Is there a stem cell transplant in your future?
The newest failure of momelotnib, reported in this issue, added to this decade’s string of spectacular MPN drug failures in clinical trial, remind us there is still an option. In fact it’s the only option for some of us: Stem Cell Transplant. SCT: Replacement of our defective hematopoietic system — our blood producing machinery — with stem cells from a healthy, genetically acceptable donor. While waiting for immunotherapy, CRISPR and precision medicine to come to our rescue, SCT is the ultimate gene therapy for now.
What follows is an extensive presentation of opinion, fact and stories surrounding stem cell transplant. It’s one of the longest articles ever to run in MPNforum. With good reason. Here you’ll find MPN patients sharing their stories, MPN and transplant specialists answering questions, science, charts and data from primary sources, video…and links to key stories.
This is a fairly a comprehensive MPNforum guide to the stem cell transplant experience for those of us who now, or in the near future, may be entering that world. It is not designed to be read and absorbed in one sitting, but rather it is a miniature resource library to be scanned, bookmarked, and reviewed as needed.
Our hope is this testimony from our trusted SCT survivors and physicians will help us prepare for a a timely and successful SCT, if ever necessary.
For many of us stem cell transplant is the one great hope for a cure and a journey we hope to avoid. We rely on meds and experimental drugs in clinical trial, Despite the possibility of a life free of blood cancer, we’re keenly aware of the loss of friends who didn’t make it all the way through. What is hematopoietic stem cell transplant really like? What are the odds of success for us?
The transplant procedure (from The American Cancer Society)
Blood-forming stem cells from the bone marrow or blood are collected, frozen, and stored. The patient gets high-dose chemo and sometimes also radiation treatment to the entire body. (Radiation shields are used to protect the lungs, heart, and kidneys from damage during radiation therapy.)
These treatments are meant to destroy any cancer cells in the body. They also kill the normal cells of the bone marrow and the immune system. After these treatments, the frozen stem cells are thawed and given as a blood transfusion. The stem cells settle into the patient’s bone marrow over the next several days and start to grow and make new blood cells.
In an allogeneic SCT, the person getting the transplant is given drugs to keep the new immune system in check. For the next few weeks the patient will get regular blood tests and supportive therapies as needed, which might include antibiotics, red blood cell or platelet transfusions, other medicines, and help with nutrition.
Usually within a couple of weeks after the stem cells have been infused, they begin making new wh
ite blood cells. This is followed by new platelets and, several weeks later, new red blood cells.
Ann Haen (From the MPNforum Facebook Symposium)
Genny felt no job or career was more important than life. … She wants to live for her children….it’s different for everyone. There’s no right or wrong in this decision. ….I am a big believer in not trying to talk anyone into a transplant. I also think people should not talk others out of a transplant. It’s a personal individual decision.
There is an essential contradiction built into the stem cell transplant decision. Clearly it is the young, the less burdened with myelofibrosis, who will do better on this journey and are the most reluctant. A high risk end stage MF or AML patient often has little choice. But for the intermediate-risk, relatively healthy patient with progressing disease, SCT means trading a potentially manageable MF for the unknown rigors, restrictions, and risks inherent in stem cell transplant.
It is not an easy decision. No one comes out the other side through the same door they entered. Life is permanently altered — often miraculously better, sometimes terribly worse.
In this bid for renewed life, there is one assured death. Destruction of one’s native blood-producing system, of one’s immune system, is necessary to make way for the life giving blood-producing stem cells provided by a generous donor. Eradicating the patient’s own blood-producing capability has life changing implications.
Once the donor cells are introduced and find their way into the bone marrow, the patient’s transformation begins. Soon every cell in the patient’s body will be washed in new blood carrying nutrients, oxygen, carting off wastes, exchanging gases and fluids.
Every blood cell, eventually, will have new DNA. The patient has become the Chimaera, the mythic creature made of parts from different animals. DNA of donor blood, the product of two parents, will wash into every cell, tissue and organ created with the DNA of two other parents.
In this transformation is both hope and danger. The river of donor blood carries its own gene-driven disease fighting capabilities, including T-cells that search out antigens by brushing up against every cell in search of alien proteins. Thus the donor cell that brings new life will also attack the patient’s cells that appear to be foreign. Graft Versus Host Disease can be minor and even helpful and can be serious and life threatening. The close match of donor and patients — Human Leukocyte Antigens, the gene sequence coding for the antigen signalng system on the cell surface– is designed to minimize this collision of cultures.
Nobody faces a SCT alone.
It takes spirit and courage to undertake a stem cell transplant. And it requires a village of support along the way. Stem cell transplant is a frontier to cross and those who do are like refugees from a blighted nation arriving at a new home. It is necessary to become vulnerable during the pre-transplant stages of SCT when the mutant disease causing clones as well as natural and acquired immunity is destroyed. Like a refugee one is dependent on others for survival.
In addition to a skilled medical transplant team and identification of a stem cell donor, a support network is needed. Obstacles have to be negotiated — care, lodging, insurance, finances, social and personal affairs –all in a time of weakness, pain, anxiety, and hope.
And when it’s over, there’s the countdown to the first hundred days, the other side of SCT, rebirth through the SCT’s bloody burning birth canal. It’s a dependent time to focus on recovery, with the affairs of the everyday world mostly in the hands of others. But when it works — and it usually does — stem cell transplant is a miraculous passport to a life free of blood cancer.
It’s a hell of a trip. Much of advance reality comes to us through stories we tell each other. And to tell us about their own SCTs, we have six fellow patients. We’ve asked Chris Harper, a stalwart SCT survivor who has supported transplant patients around the world, to bracket this discussion with an introduction and conclusion.
Here then are six fellow patients stepping on the stage to tell us the truth about their stem cell transplant. And, representing the great bulk of MPN patients, here too is Jeremy Smith who, like many of us, is waiting in the wings, both counting on SCT to cure his long MPN struggles and hoping to avoid it.
So settle in for a visit with Chris Harper, Marty Prager, Beatrice Larroque, Andrea Warnsing, Dolf Van Den Berg, and Marina Sampanes Peed.. plus Jeremy Smith,
Stem cell transplant… to go ahead or not?
You have Myelofibrosis, words you don’t want to hear. Googling reveals much, including tablets that can help, various non-medical concoctions that ‘cure’ (?) and there is also mention of a potential medical cure too – Bone Marrow Transplant (BMT aka Stem Cell Transplant SCT – virtually the same thing). More research shows SCT is not suitable for all, but you fit the profile. Further online research with groups/forums and discussions with medical staff expands your knowledge.
Treatment risks are stressed. Yes one in 5 do not survive SCT, one in five relapse, but clearly more do better. You hear about GVHD (Graft Versus Hosts Disease) during and post treatment, something that can affect various parts of your body and varies considerably from patient to patient. some severe and some minor. It is necessary to a degree as the Graft Versus Tumour helps the body attack the disease but can be quite debilitating or not too bad.
So do you go ahead?
In some cases the progress of MF can be slow with the symptoms managed by medication and there are always new drugs under trial which may one day lead to a cure. SCT still remains the potential endgame and can be delayed, although the onward march of MF and transfusions can impact the body’s ability to handle the rigours of transplant. In other cases the progression of MF is more rapid making SCT an imperative and simple choice of go or no go, with the former having variable outcomes and the latter having only one. A difficult choice to make helped by the experts.
I had an SCT six years ago at the age of 57 choosing to head down the SCT route while I was fit enough to give my body the best chance of getting through it. My initial haematologist told me that SCT was unproven and a second opinion from an MPN specialist was required to progress this. Since completing my SCT I have been in contact with many others around the world, buddying (supporting) many following the same path. Some I have lost along the way while others are striding forward with their lives. Some have had manageable GVHD others have had severe battles. It is a personal decision whether to go ahead as the treatment can shorten life as well as lengthen it.
In this article a number of SCT survivors are sharing their experience to try and give others information from the patient’s perspective that might assist with the decision making process. Here are brief accounts of SCT and what it did for them……..
Dolf van den Berg
My condition was getting worse during 2011 despite playing tennis and soccer. Thought it was age (was 52 at that time), but after a blood draw and bone marrow biopsy I got the diagnosis: high risk myelofibrosis with a life expectation of 1 year.
Almost immediately we decided to start the stem cell transplant procedure. Life quality with high risk MF was too minimal and we thought it was worth the risk.
Now, 5 years later, I think we didn’t realize the high risks of this procedure at that moment.
Streptococcus A bacteria.
After 2 months we got the green light. They found 3 donors with 100% match. Unfortunately one day before admission to hospital (Feb, 2012) to start the transplant I got streptococcus, a bacterial infection due to low white blood counts. It almost killed me in 24 hours. Admitted in ER, for an operation because the only way to get rid of this bacteria is massive antibiotics and exposure to oxygen. Most common, this bacteria is on arms or legs and very often the only way to stop it is to amputate the arm of leg. So very, very scary. The most scary thing I had in my life. Fortunately the bacteria was on my upper chest where they removed skin from shoulder to shoulder and 20cm wide. It healed well and looks like a skintransplant from a burnwound. Six weeks after the operation I was discharged and recovery started
Of course the SCT was postponed. I recovered, bloodcounts remained bad but stable and we started some vacations with the family knowing there would come another moment when we should start the procedure all over again.
There was an opportunity to start with a clinical Trial, pacritinib. I volunteered for it because I was hopeful this would be a solution to change MF to a chronic disease and I would avoid the risks of a transplant. The pacritinib trial did not work out well (got toxic) and we stopped it. Also I became transfusion dependent due to low hemoglobin..
Beginning of 2014 we started ruxolitinib for several months but it did not improve quality of life.
In 2014 my blasts started rising. MF was morphing into AML. It was not a surprise as we saw an increase of blasts during the regular blood draws. So always keep an eye on increasing blasts!
We decided on two objectives:
As both objectives are life threatening, I arranged my last will and some other stuff before admission.
First get rid of the AML, and second, one week later, start the stem cell process. After the first procedure a BMB revealed that AML was gone and we started the SCT procedure.
There was no doubt to start this. It was do or die. Blasts were 68% (normal is <5%).Two days after transplant, and with white blood counts as low as zero, I got huge heart and lung problems. Was transferred to ICU where they worked to save my life. CPR, tracheostoma, artifical respiration.
May 15, 2014 is the day of my rebirth. Nurses and doctors were very helpful and informative during all these weeks. During transplant family and friends were not allowed in my hospital room because of my vulnerability.
A SCT with an MF patient is slightly different and more difficult than usual. First the spleen needs to shrink, otherwise it will surge all the new stem cells, even before they can graft in the marrow.
Second, there is scar tissue due to MF which makes it more difficult for the stem cells to engraft. So it is important to choose a hospital and a doctor who is not only an expert in SCT but also in MF.
First they put a PICC line in, which makes blooddraws, medication and chemo much easier to be done. The chemo consists out of different kinds. ATG, a “rabbitvirus,” three times in 3 days, together with a high dose of prednisone. I felt sick, feverish and couldn’t sleep due to the high dose prednisone.
Next there was a chemo called melphalan and a chemo called fludarabine. During all these weeks I was still on ruxolitinib because it also affects the spleen size.
It all did its work. My bloodcounts dropped and my spleen shrunk to normal size (and it was huge, bottom was below my bellybutton). We got the green light to let the stem cells go.
And after…GVHD kidney.
The second half of 2016 my health declined. It appeared to be GVHD affecting the kidneys. Very rare complication (1% of the patients). And again we got it under control with prednisone and immunosuppressants.
After 6.5 weeks in Intensive Care, I was transferred to a normal hospital room and 4 months after admission I was discharged. Weak, no muscles at all. Could not turn in bed from one side to the other. We started rehabilitation with physical therapy.
Took half a year to learn walking again. First with walking aid and wheelchair. October 2014 I got graft versus host disease(GVHD) on my skin, mouth and liver. Fortunately we got it under control with immunosuppressants and prednisone which could be stopped after a year.
Costs and travel.
The costs for all medication, procedures for AML and sct, PT and PCP are covered by the mandatory health insurance in Holland. We pay about 110 dollars a month and have a copay of 415 dollars a year. We live 20 miles away from the hospital so it was easy to travel.
No more work for me. Chemo and complications have done too much harm, but definitely I do not regret the decision for a transplant. It was not easy, but sure worth it.
After getting dx high risk MF it was impossible to work, and also after the sct and all complications it is not possible to work anymore. In 2016 I had 91 appointments in the hospital. And this year already ove 30. Main complaints are fatigue and lack of concentration dus to chemo and complications.
I had a great job as an CIO in a hospital I was responsible for all ICT ( Spell out) and telephony in 1 hospital. That job was gone very quick. But fortunately I am never bored and started some new challenges which I can do whenever I feel better (and I am happy there are moments I feel better).
A lot of my time, and satisfaction, I put into a Dutch MPN FB group. Just with one goal. Learn from each other to get the best available quality of life. Creating awareness among Dutch MPN patients that MPN is very rare and that they should stay in charge of their treatment and be an active partner with their doctor.
June 28, I am organizing a sponsored boat trip on a sailship with 70 Dutch MPN patients where they can meet, talk, eat, drink and exchange experiences.
The boat trip was sponsored by the Dutch MPN association and “Vaarkracht,”, Dutch initiative to give cancer patients (and sometimes also their caregivers) a day with joy and no worry.
I am very happy. I have time to rest and relax (watch TV) and visit hospital when necessary and I can do some nice things when I feel better. It has been, and still, is a rollercoaster. After my kidney GVHD I am not so convinced there will be no problems anymore so if possible we try to enjoy every minute, every day of our livesHope this can bring more clarity in who I am and what I am doing while still recovering from sct and complications. Bye and greetings from Holland.
Most important advice Don’t wait with enjoying life till later, because if later comes earlier it is too late. That is what these last 5.5 years have brought me. And stay positive. It will contribute to a better outcome. There will be bumps but you can beat them!
Marina Sampanes Peed
What led to your SCT?
Chronic meant Hopeless
Unlike many people who are understandably fearful of the risks, I had come to terms with death well before I was eligible for transplant.
After thromboses of the portal, splenic, and mesentery veins caused peritonitis, sepsis, organ failure, and ischemic bowel in October 2007, my life changed forever. The surgeon said I had less than 10% chance of surviving the assault at the time. I returned to work full time after a few months, but my health did not rebound. I had to end my career in 2008 when the symptom burden of the PV (which had yet to be diagnosed) caused my energy to plummet and my cognitive abilities to suffer. So we had a reduction in household income and an increase in expenses, with two growing children.
From 2010 – 2013, I experienced a decline in quality of life with odd symptoms that specialists insisted were not part of the MPN experience. I consulted with specialists in gynecology, rheumatology, infectious disease, neurology, cardiology, gastroenterology, and psychiatry in search of diagnoses that could then be properly treated. I spent over a year on prednisone which provided a set of side effects that I don’t wish on anyone. The effort to keep up a happy face was physically and emotionally exhausting.
Your preparations and concerns
Concerns for my kids
It was important to me that my family and friends could talk to me and one another without whispering words like ‘cancer’ and ‘transplant.’ I also wanted my kids to have as much normalcy in their daily lives as possible. To teach resiliency, one must live it. So let’s make the best of what we have while we have it.
I talked pretty openly with my kids about the situation without loading too much emotion into it. I’m the mom who tried to talk about sex, alcohol and drugs in a matter of fact way so they wouldn’t feel embarrassed (not sure they agree). Once they understood that my bone marrow was wearing out and the transplant was my one chance to get better, they were all in.
We held swab drives all over our county and family hosted them in several states. We facilitated about 2,000 people joining the registry through DKMS and Be the Match. That gave us all something positive to do with our energy while we waited for my match to be found.
Concerns for my community
The weekend before my induction (preparatory chemotherapy) I had a brunch at my home with a few close girlfriends where my talented hair stylist friend shaved my head. We all laughed, traded wisecracks (“if you really love me, you’ll shave your head, too!”), and shared a few tears. The next day, we had a “Chemo Kick-off” potluck party with family and friends, including our kids’ friends and their parents. A henna artist drew on my head and did artwork on our guests. My son and a few friends (all men) also shaved their heads on our back porch in solidarity. We laughed, we talked, we prayed. I told them, “You are our tribe. There is a long journey ahead and I’m told it’s quite a roller coaster. Thank you for looking after our family and understanding when we forget something.”
I also printed small, square cards with my name, diagnosis, and my CaringBridge page. I gave them to my kids and close friends so they could share them with people who inquired about my health, progress, etc.
Left to right: Alexander Peed (son), Marina Peed, Eileen Sampanes (Marina’s mom & primary caregiver through SCT), Katrina Peed (daughter), and Robert Peed (Marina’s husband)
Concerns for my husband
My husband was not comfortable with the uncertainty of the process. He WOULD NOT talk about a future with me not in it. It was a source of frustration for me because I wanted to know that he and the kids would be able to thrive after a suitable mourning period. We had some friction because I SO wanted to talk about it and he couldn’t. I want him to get married again if he finds someone almost as awesome as me, and he can then retire in Florida if he’d like (I refuse to move there). Once I accepted that he’s doing the best he can, I dropped my expectations (and ensuing judgment and resentment) and appreciated him for who he is and all he was doing to keep the family together in his own way.
What’s the Password?
I created two new file folders and showed my kids and dear neighbor who is sister/friend where they were in the event I did not make a full recovery. I’m a bit superstitious and it made me feel better that if I was very prepared, they would never need the files.
Just In Case file contents:
list of all my on-line accounts and passwords (financial accounts, Amazon, social media, health records, insurance, fax, blog, photos, DropBox, Apple IDs, etc.);
all the online accounts and passwords of my husband and kids that I use (for camps, athletics, college boards, FAFSA, school lunch accounts, taxes, etc.)
Account numbers and contact info for all our major household accounts.
My retirement account, small stock trading account, term life insurance (I added Robert as an authorized person to access the accounts on my behalf and as a beneficiary where possible prior to the transplant).
Advanced Directive: I am very clear IN WRITING as to what measures I want and do not want taken in the event I reach a non-recoverable state. And I talked about it openly to all who would listen: that QUALITY of my life is paramount to me. I don’t want to linger and take up space, resources and oxygen if I am not able to get up and about on my own and communicate lucidly.
Letters to my kids: I wrote a letter to each of my children to be given to them when they graduate from college.
Marina’s Funeral File contents:
My will (did it online without an attorney – because my husband refuses to sit for the discussion)
Mom’s “You Know When” Gift list: I gifted my sentimental personal items to each of my kids so there would be limited confusion as to what was promised to whom.
Info on the cremation company and link to the eco-friendly container they could put my cremains in and toss into the lake.
List of favorite songs to play at a memorial/celebration of life party, along with a beverage list and margarita machine.
Your direct experience of each stage
You Need a Transplant
I felt both shock and relief when Dr. Mesa of Mayo Clinic Scottsdale explained that I was among the rare PV patients with progression to aggressive MF. Shock because he stressed an urgency (not enough time to wait until my son graduated from high school the following year). I could feel that I was dying inside and I desperately wanted to live to see my son graduate from high school. There was also great relief because I finally could take a crack at a cure from the miserable existence with debilitating symptoms.
The First 100 Days
The transplant center gives every patient a binder or package of information that describes all aspects of the journey. It includes a “100 Day Timeline” that shows typical milestones transplant patients reach from Day 0 (your “re-birthday”). What they do not tell you is that if you have Myelofibrosis, you are better served to turn that page into a paper airplane and throw it out the window. Our damaged bone marrow takes a lot longer to become hospitable and for the donor stem cells to make themselves at home and engraft. Do not measure your success against that silly 100 Day timeline!
I was going to write, “Transplant will kick your ass” but figured Zhen would have to edit it out. So I will say that transplant packs a wallop on your body. Our bodies react differently to the induction regimen and the stem cells themselves. My liver won the role for GvHD target for quite awhile. Then my gall bladder and bile ducts decided to act up. We had to wait six months before having it removed by a transplant doctor due to the risks involved.
My donor’s whites and platelets took hold on schedule (for MF patients) but his reds took a full year! I was transfusion dependent for one year after my transplant. The side effects of that experience is another chapter. Needless to say, I grew frustrated at the slow pace of progress, the one step forward and two steps back.
The Psychological and Emotional Journey
A kind nurse warned me that everyone focuses on the blood counts and organ function, but the most difficult part of the journey is what takes place in your head. She was so right! Living with Uncertainty and Ambiguity can drive you crazy if you let it. There were several low spots in the journey where the doctors had to select the “least worse” treatment option. I had no idea how much art went into the science of treating patients. Every treatment puts stress on another part of the body and close monitoring is necessary.
Writing my updates on CaringBridge helped me. I believed that if I lived the experience out loud, my experience may be of value to someone else. If I didn’t make it, I wanted people (especially my family) to understand how delicate the process is, and that I willingly charged into it for the chance at a bonus life.
My Transplant Cocoon
I decided early on that to give my donor’s stem cells the best chance at making themselves at home, I needed to be a warm and welcoming host. So I consciously blocked out as much worldly negativity as possible. I reasoned that since I can’t do anything about it anyway, it needn’t cloud my spirit. So no news or politics (and I’m a bit of a political junkie). No toxic people. No drama. No hate. No fear. No ugliness. I had Turner Movie Classics play softly as I dozed and woke, watched TED Talks on topics of interest, listened to classical music and jazz, and found as much humor as possible.
My Transplant Sisters & Brothers
I came to rely on a few people who went through transplant before me (I call them my “upper classmen/women”) for emotional support. There is a rawness that it difficult to describe, and uncomfortable to share with those closest to you. The ability to vent without fear of scaring or hurting the other person (or worry they will hold it against you) is priceless. I try to be that person for others now.
The costs you incurred – and how you handled travel, lodging, family etc.
The SCT created considerable costs in every aspect of my life.
Opportunity costs ~ I wasn’t able to be present for my kids in their high school and early college years as planned. Lost out on work, travel, social life…
Relationship costs ~ our marriage changed from an equal partnership that played on each of our strengths to a relationship where I became dependent and Robert had to bear the full load of supporting the family and organizing family activities, college visits, etc. Did I mention that sexual activity was put on ice? “No frisky til your platelets reach 50” is the warning, but the libido is shot from the chemo, fatigue, and everything else.
Costs to my caregivers ~ those who took time off work or other daily activities to take me to my daily clinic appointments, stayed with me during hospitalizations, picked up my medications, did our laundry, cooked for my family… can’t put a price on the loving care I received.
I was very fortunate in the scheme of things. My husband maintained his employment and our health insurance throughout our MPN and SCT experience. Thanks to hubby’s frequent flyer miles and my family in Phoenix, my mom and I were able to go to Mayo Clinic for a consult with Dr. Mesa when the disease progressed with unusual symptoms.
The consultations and testing at Mayo Clinic totaled $9,600 in February, 2013. I had to pay full price out of pocket because Mayo does not have a contract with my insurance (Kaiser Permanente Georgia) and my insurance denied the referral request.
Fortunately, I was able to appeal its decision to a National Review (enacted by the Affordable Care Act) and it ruled in my favor. It took a year to chase down the payments (Kaiser Permanente- Georgia paid Mayo Clinic; then Mayo Clinic credited the payments back to me). That’s a long story in itself!
My health insurer (Kaiser Permanente Georgia) has a reinsurance contract with Global Administrative Solutions for transplant expenses. I have spreadsheets on all the bills from the hospital, the BMT group, Mayo, and insurance.
My transplant was done at Northside Hospital with the Blood and Marrow Transplant Group of Georgia (in Atlanta, Georgia). They use an “out-patient protocol” which held great appeal to me. Instead of staying in the hospital, I received the necessary infusions, transfusions, etc. at the BMT clinic which is adjacent to the hospital. We would arrive at the clinic at 7 am and stay as late as necessary (until 5 or 6 pm at the beginning) and then drive home for the night. If I got a fever above 100.5 or had any other issue arise, I was wheeled over to the transplant unit and admitted. I spent a total of almost 5 weeks in the BMT unit during the first 11 months post-transplant.
The daily parking rate was $5 at the clinic/hospital. I received a free parking sticker for every 3-4 units of platelets someone donated on my behalf. Fortunately, many generous people gave of their time and blood to help me and my fellow patients. We also got free parking stickers when I was on in the hospital. Family learned to get as many of those as possible (until they moved the stickers behind the nurse’s desk).
The bills from the hospital, physicians, clinic, transfusions, infusions, and labs for the first 21 months (March, 2013 – December, 2014) totaled approximately $1.3 million. Insurance paid approximately $694,000 to those parties. I paid approximately $15,000 in co-pays and co-insurance (excluding our monthly insurance premiums). It would have been much more if the Affordable Care Act’s Maximum Out of Pocket limit had not come into effect.
Expenses continued through 2015 with IVIg infusions and lots of labs, but are minor in comparison to 4.5 months leading up to transplant and the 18 months following.
Because a 24/7 caregiver is required by my transplant center, my mother (Eileen) retired from her career as a Patient Safety and Quality executive with a nonprofit hospital system. She sold her home in Texas and moved in with us in Georgia. My neighbor and dear friend, Libbi, also signed the caregiver agreement at the transplant center. It was a long road for all of us.
A Word about Insurance
As frustrating as the health journey was, reconciling the insurance claims statements with the bills from the various providers was beyond frustrating. And I have great insurance! During more lucid times, I created spreadsheets to match and compare claim numbers with billing account numbers, invoices and dates of service from each provider.
Dealing with past-due bills when you never saw the first one was beyond frustrating.
All on-line and electronic records are not created equal.
That’s another story.
Describe your current health status and feelings about your decision to proceed.
My transplant protocol was part of a research trial in 2013. I believe that progress is being made with induction treatments to maximize engraftment likelihood while minimizing chronic GvHD. Each year it seems to improve.
Today I am almost 4 years post-transplant and I feel great! I am almost 52 and I feel more like I did in my late 30’s. No GvHD worth mentioning.
Since the transplant, I’ve had 5 surgeries to finally get me in good shape (gall bladder, bunionectomy/toe realignment, abdominal hernias repaired, TVT (trans vaginal tape) to prevent stress incontinence, and basal cell carcinoma removed (Mohs surgery). I do have arthritis in my hips and knees, but who doesn’t?
At my 3rd year check-up, my transplant doctor told us that I now have completely NORMAL life expectancy. This shocked us. All the charts I’ve seen at MPN conferences indicate that we can get 10-20 years from a transplant. He said there are 4 reasons one may not have a normal life expectancy:
Relapse (highly unlikely after 3 years)
Graft vs Host Disease complications
Organ damage leads to failure
Secondary high risk cancer (also unlikely)
So at this point, I am allowing myself to dream again, make plans, and live without fear. I’m living my Bonus Life. And it is grand!
I was able to attend my daughter’s college graduation this week (May), thanks to my stem cell donor and hundreds of blood and platelet donors. There is no doubt that had I not gone through the transplant journey when I did, I would be long gone and people would tell my daughter, “Your mother would be so proud of you!”
My name is Andrea Wernsing, and I am 50 years old. I am from Illinois. I was diagnosed with PV in 2002 at the age of 35. Within the past few years, I have found out that one of my oncologists diagnosed me with ET early on. Didn’t even know about that one. I had so many other acronyms attached to my name, what was one more (PV/ET/MDS/MF/AML at anytime).
In 2002, I was diagnosed with MF (JAK2) and MDS (ASXL1). Here I was stuck with a high risk DIPSS score, receiving 2 units of reds every four weeks with a poor prognosis because of the ASXL1 mutation. Then you hear that 1-3 year life expectancy. Sure doctors are not fortune tellers. They cannot accurately predict when it is our time to go. I have a way of looking at this as we all come on this earth with an expiration date stamped on us like a gallon of milk or any other food product. I have been right on that edge many times. I thought to myself, ‘You have to get this ball going.’
If Dr. Abboud (my SCT doc), Dr. Mesa, Dr. Fauble, Dr. Stein, my local oncologist Dr. Dy, and the oncologist Dr. Oh who works along with Dr. Abboud all agreed, it was a no-brainer for me. They are the experts, and it was time for me to dig up that courage from deep within to move forward.
I know there are some members who are eligible SCT’rs trying to make the decision of whether or not to move forward with transplant. Kind of think of it this way. How much pain and complications have you already been through with your PV/ET/MDS/MF? Was it scary at the time? Do you always worry about WHEN will I get worse? What will it feel like when or if I get worse? All of it is scary no matter what!!!! You may be one of the lucky ones who won’t progress into AML. You may be one of those who never need transfusions. If you are one of those who need transfusions, your body can only handle so many before iron overload comes into play. I was getting 2 units every month. Of course, that meant I did have iron overload. I no longer have it because many Desferal IV treatments have made it within normal limits.
It is your choice in the end of whether to continue doing what you currently are or go for the big prize and take your chances. To me, either path is taking chances. It is not as simple as the decision that Dorothy made to ‘Follow the yellow brick road.’
For those of you contemplating moving forward with SCT, of course you will be scared. Everyone will be scared regardless. We go into SCT as the lion on that yellow brick road, but can soon prove to ourselves that indeed we can be a TRUE lion/warrior. It is a form of gambling either way you look at it. It would be a better gambling experience if we could pull a slot handle and have those coins come pouring out. I know that kind of immediate payoff ended a long time ago.
Many are not even eligible for SCT. Sadly, they are not given this opportunity. I feel for each and every one of you who fall into this category. Others choose not to go the SCT route. Enjoy every minute of every day with loved ones surrounding you!
I hope that my advice will help those who are contemplating SCT. This is only my advice. I am no expert in any means. For 15 years, I have been fighting this battle on the front lines with my internal bulldozer up and waiting for whatever is thrown at me next to ‘Plow it down. Take one small baby step at a time, and it makes it easier.’ I have been extremely sick and near death many times since my original diagnosis in 2002.Go into it with a positive attitude. Well, as positive as you can be in this not so pleasant situation. I have many moments where I still cry. I tell myself, “Ok. I will give you a little longer for this water works. You know you will be in the bathroom soon or using those wonderful, round, blue bags because you have made yourself sick.” Sometimes, I don’t stop in time.
Laugh. Laugh. Laugh. It helps. I even tried and continue to try to crack some not too funny jokes. I want to make this as easy on myself as possible. Bring Lucille Ball DVDs/downloads/even full YouTube videos of her are out there. That woman can make anyone laugh. The best ones are the chocolate candy factory scene and the grape stomping scene. Whatever kind of movies you can watch that can make you relax, bring them with you (Westerns, 3 Stooges, Honeymooners, Little Rascals, anything with Betty White, etc). I could not focus on a movie with a plot nor read a book or magazine. I did adult coloring books. I also listened to some spa music, relaxation music, Deepak Chopra, and others on Pandora. The concentration was gone, zip, non-existent. Struggling with this at times still today.
Drink a lot of fluids. Stay hydrated. Dehydration can make you feel like you have something extremely wrong, and you may only need a bag or two of salt water. You can feel lightheaded, dizzy, see blurry circles of fuzz, and have the feeling similar to being anemic when it gets difficult to breathe. Make sure you are getting them all out of your body too. Nurses will log this. If they forget to do it, do it yourself and weigh yourself too. Make sure you are not retaining fluids. Nausea, anxiety, acid reflux, insomnia, bowel issues – tell the nurses as soon as you feel even a little of them coming on. Get the meds in you to stay ahead of it as much as possible. Walk. Walk. Walk. Walk some more. Keep walking no matter how sick you get of it. On the days you feel like you do not want to walk the halls around in circles like a lab rat in a maze cause you feel so horrible, MAKE yourself at least stand and walk around your room. If you feel unstable walking on your own and want to walk the halls, have a nurse help you with a belt if you need to or sit in a wheelchair and move around with your feet.
WEAR THAT HEAVY N90 mask whenever you are completely neutropenic and want to walk the halls or outside. When your ANC is at your hospital’s safe level, wear the paper one. My entire floor had the isolation HEPA air purifier, and that is why I only needed the paper mask when I stayed on my floor when my Anc was at a safer level. If you leave your hospital floor, wear that N90. Wash those hands right away when you get back to your room even if you hand sanitized outside your door. Clip a hand sanitizer bottle onto your pole. Believe me your pole will be going everywhere you do.
Use a commode by your bed so that you can get up, pivot, do your business, and pivot and get back in bed. Do this when you are so weak you cannot even move. I brought a fan. If you choose to do the same, make sure it is a brand new one. I get sick when I am hot. I even have vasal vagal attacks if I get too hot. All the way out – no pulse, no bp, nothing. Had this starting during my SCT stay. Doc wouldn’t believe me. ‘How do you know you are having a vasal vagal?’ ‘I do. You only have a few minutes, and they are about out. I will have no pulse, etc. Please do not use the paddles on me. I will come back. Get me some cold wash clothes and my fan out of my closet asap.’ I had to wear a heart monitor on two different occasions because God forbid a patient knows her own body. Like you want something else to drag around with you when you try to walk. As if only having 2 free hrs a day pole free is enough. A few days later that same doc saw me in the hall walking. ‘You scared the shit out of us.’ I asked what was it? He mumbled ‘vasal vagal attack.’ I was not one of his I guess typical, self-diagnosing, hypochondriacs after all. I kept cold wash clothes, a fan, more hand sanitizer of course, and a larger tub (in case it was needed for mouth icky purposes) on my over-the-bed table. I cannot use antibacterial soap or regular hand sanitizer. They make my hands bleed. I brought in my own non antibacterial soap and alcohol free hand sanitizer by babyorganics.
Mouth care. Do It A Lot!!! Use that magic mouth wash. If your mouth gets bad and hurts to eat or drink, coat your throat with that magic mouthwash first. Use those foamy green sponges whenever your mouth feels like a desert moved in it. Let ice sit in your mouth. It feels wonderful when you do not have spit to swallow. The green and white mints at Walmart and gum with xylitol helps a little. You will never take spit for granted anymore if you get this problem. Hard to comprehend this concept unless you experience it.
DO NOT SHAVE WITH A MANUAL RAZOR OR FLOSS WHEN PLATELETS ARE LOW. Ask the hospital personnel or look at your daily count chart to check platelet counts before you even think about doing either of the two.
Try not to dwell on losing your hair. It is only hair, and it will grow back. I have baby fine hair, new fingernails, toenails, and skin. I did not wear the hats, scarves, and wig for long. I held my bald head up proud and was not embarrassed at the least bit. I finally LOOKED SICK after all those years. No more yelling at me for taking electric shopping carts at stores or handicap parking spots.
Remember when the donor starts making his blood in your body and your counts start to go up, you will gradually feel better and stronger. It is only temporary. Even getting sick from the chemo is temporary. Make sure you keep the necessary meds in you to alleviate at least a little of that miserable part. I do not know if any of this can help anyone in making a decision. I only want to tell you what I went through. I knew I was headed for AML. I did not want to wait for that. After 6 months of the 1 year of Decitabene I did pre-SCT, it made me stronger. I no longer need 2 bags of reds every four weeks. My transplant doc said, ‘Now, is the time. I cannot make you any stronger.’ I went for it while the small window of opportunity was available.
I do not regret having my SCT. It is a difficult journey with some setbacks, but I knew I had to go for it. It was worth it for me! Thanks to my German, young, male donor I am still here today and am able to hold my only grandson.
Recovery is the Invisible Hurdle. March 8, 2017. One year, 5 months and 7days; 524 days since my rebirth
I knew recovery would take a long time, it would probably even take a year, I thought, maybe even longer… It seems I was a little naïve, but how could I really have known? One year sounded like a really long time, but everybody is different, everybody’s journey is their own and can’t be compared with others’. In that sense, it is a very lonely journey, in totally unchartered territory, and no guide to get us through, just a general idea of what could or could not happen from others’ experiences.
By all appearances I seem healthy, as long as I manage to conceal the dark raccoon eyes that are still sticking around. People look at me and think I’m “past the whole ordeal”, that I am cured, “normal,” they say, or at least I seem to be, on the outside. And even though I am still struggling with enormous fatigue, stomach issues, chronic GVHD of the mouth, with dry skin, mouth, eyes, and more, and that I need an immunoglobulin infusion every 3 to 4 months, these are all relatively minor things with which I can deal and around which I can adjust my life. If that’s the price I have to pay, I’ll do it gladly.
But there is an invisible hurdle, one with which I have a lot more difficulty dealing and making peace.
Last week, I underwent 6 hours of neuropsychology testing, and today I had my feedback.
The executive function part of my brain, my working memory, my organizational skills, are severely impaired. Most people who go through chemotherapy treatment are affected to one degree or another. In my case, almost 1 ½ year after my rebirth, I forget what I am talking about in the middle of a sentence, I go somewhere to, say, get something, and when once there I get totally sidetracked because I forget that I was looking for something. From my own newfound ADD I have gained a lot of empathy for my son and people like him with ADD, which was a totally foreign concept to me that I could barely imagine on an intellectual level. I sometime just cannot process what people tell me, or what I read. I know I know all the words but I have no idea what they mean; so after I ask people to repeat what they said a couple of times I stop, feeling too embarrassed to let them know I don’t understand, and I remain quiet, which can be perceived as being rude; or I’ll stop reading this incomprehensible sentence and hope I’ll understand it the following day when I am a bit more rested.
Because my working memory is so impaired, I have developed a hierarchy of importance in the information to store in the minimal space I have available, that means I may have to ask the same questions over and over, because I’ll forget the answer immediately, which annoys my kids to no end. If too many pieces of information come my way in a short amount of time, I suddenly feel extremely overwhelmed and get dangerously close to the edge of panic; at that point I have to take a step back, close my eyes, take deep and slow breaths, and call it a day.
Call it a day…
That has never been part of who I was. I always believed about pushing through, I always believed you could always take one more step, and then, another. Mind over matter. There was no choice, my mind had to push my body through what life kept throwing at me, over and over. I always prided myself in being very well organized, the “queen of multitasking”, that was me. No matter what hurdles and how many of them were thrown my way I was always able to slow down and immediately organize a list of priorities in my mind, without being fazed. I am not saying it was easy or that I always enjoyed it, but I was able to do it and push forward. Mind over matter was my life, and I just did it.
Today, it is not so, and it is makes me feel terribly impaired, handicapped, diminished. I do not recognize myself, and it is hard to make peace with it.
The Neuropsychology doctor suggested a few tools to help: ADD medication, Occupational Therapy to learn palliative tools and techniques to accommodate and work around my impairment, Mindfulness practices, a book. …The likelihood of my brain functions getting better is slight but at least it is probably not going to get worse, nor is it the beginning of dementia or Alzheimer, which is the best news of all.
To make matters worse, just like when I was explaining the effects of MF on my life to people who often responded that they knew what I was talking about because they felt the same way, thus greatly minimizing what I was going through (No! no! no! they didn’t!!) But how would they know, they were just trying to related and make me feel better, and they didn’t know that it just made me feel like I had to defend the fact that I was really sick and that they had no idea what that meant! Today, I hear again the same kinds of answer: “I go through the same thing, it’s normal at our age, we are getting older after all, etc… ” And again, NO! It is NOT THE SAME!! Yes, I’m getting old too, but unless they had chemo treatment or brain injury, IT IS NOT THE SAME! I remember something my teacher said in my Abnormal Psychology class years ago, we all do things that could be classified as “abnormal behaviors,” but it is a matter of degree and how much it disrupts your life.
And this greatly disrupts mine.
So, once again, I am finding myself in this awkward position where I have to defend and assert the fact that I am not well, and that they cannot, should not, compare their experience to mine, because, no matter how much they want to make me feel better and show me they understand, it is not the same.
I have heard much about the “New Normal” post transplant. To me, that never meant much, I have no idea what my “old normal” would be. I have had ET since my early 20s, MF since my late 30s/early 40s, add to that a nightmarish marriage, horrific divorce, raising kids alone, working full time, struggling financially… who wouldn’t be tired in this situation? Was it my MPN or my life situation? Or was it, more likely, a combination of both? I have been tired all my life, I have been pushing through no matter what, I’ve lived “mind over matter” through any situation, for my whole life, until my body couldn’t take it any more and the need for an SCT had become inevitable. My life pre-SCT has never been “normal,” so I didn’t have much expectation as to what the whole thing really meant, I was just hoping I’d feel better, be able to function, and have the possibility of a future to live.
So, this “New Normal.” Does it mean, for me, impaired mental abilities?
I just realized these past few days that I have to start talking about my impairments to the people close to me lest they find me rude. I need them to understand I am not doing it on purpose but that I am simply not aware that I ask the same question over and over, or that if I’m not responding to them it is because I cannot comprehend what they are saying and I am too embarrassed to ask them to repeat again. I need them to know I am not dismissing them but that my brain, at some point, simply cannot register anymore. I need them to be understanding, tolerant, and kind toward their mentally diminished and impaired friend, I need them to know and accept that this is my new normal.
And so do I.
Hello reader! You may be reading this because you are either a patient considering a transplant or a caregiver of a patient considering a transplant. In any event I’m writing to you as if you were a friend who asked me about my transplant journey.
I was diagnosed with MF in 2006 and received an allogeneic transplant from a matched unrelated donor in early 2010. Many aspects of the three types of bone marrow transplants are similar insofar as this narrative is concerned. The three types of stem cell tranplants are defined by their sources, namely peripheral blood, cord blood and bone marrow. I’m going to refer to all of them as stem cell transplant or SCT for the sake of simplicity. That said, let’s begin.
Looking back I now think of the process like a 3-legged table. The legs represent the mental, physical and social aspects in the process. If any one leg is weak or fails the table will fall over and the process will falter.
As I recall, after diagnosis my mental state was chaotic. I received too much information all at once and then I didn’t know what I needed to do or even where to begin. Eventually I gathered my thoughts and got on the internet and began to educate myself. The most significant discovery was the abundance of support organizations where I could “meet” others who were in the process or were pre- or post-transplant as well as get the very latest medical information. Probably the most important single thing I learned was that I had to be my own advocate – ‘me looking out for me’ would be a major component of my survival strategy. It was a philosophy that served me through the process and beyond.
The physical/medical aspects are the most complex part of the process. The unknowns will make your head explode as one my transplant buddies said. As my own best advocate I realized that I was nearly powerless to affect the outcome on this part of the journey. Apart from following all medical advise, I had to leave the details to the doctors. On one hand it was probably the most difficult process one could put their body through. On the other hand, the transplant center staff puts prospective patients through an exhaustive battery of tests to be sure the patient is in sufficiently good health to tip the scales in the favor of a successful recovery. For my part, I tried to remain calm. I found that meditation was useful to achieve this.
I now had prepared myself mentally, I had passed all of the physical tests and I was in the hospital waiting for my new stem cells engraft so I could go home. It was during this time that the social aspect of the process became evident. I had been advised to ask friends and relatives to refrain from calling but the urge to communicate was strong for me. I created a CaringBridge web page so I could communicate when it was right for me and this worked very well. This allowed me to control who received updates as opposed to Facebook which can be too public. It also became my daily journal for my own records and, importantly, gave me something to do everyday. As for visitors, my wife helped out as my gate keeper to let people know when in-person visits were appropriate or not. Visits were nice but there were times when they were too much of a good thing.
On the day of discharge, the importance of my caregiver to me as well as my burden upon her became very evident. Dealing with the mental, social and several physical aspects of SCT transplant became the responsibility of one person for a time. This was somewhat of a surprise to me as I am a very independent person always having previously recovered from ordinary illnesses more or less on my own. Mentally after chemotherapy I was somewhat forgetful, less sociable than usual and highly dependent on my wonderful caregiver for things like making sure I took my medicines and keeping up with the bills. As my physical recovery continued now at home, there were the occasional transfusions given through the PICC line that was still in my arm. This required daily cleaning was one of my caregiver’s most important responsibilities. She also continued in her role as chauffeur as I was not allowed to drive for a few weeks. Even at home there were visitors to manage so her work as social secretary continued.
Each transplant patient has a different experience. Here are a few examples of how my experience differed from others. I lived within a 45 minute drive from the transplant center so I could recover at home after risk of infection was lower rather than stay at an accommodation near the transplant center. The time limit policy made sure that if an infection or other problem occurred I could be treated quickly. The cost of transplant and post transplant meds can be huge. I was extremely fortunate to have good insurance coverage and a good prescription drug plan. My transplant coordinator told me about financial aid early in the process so I knew it was available.
Another important difference between my experience and most other patient’s is that my myelofibrosis came out of nowhere with little warning and no previous myeloproliferative neoplasms, ideopathic in medical terminology. Important decisions had to be made quickly at times and that was nerve wracking.
At seven years plus, I’ve had a very good transplant experience at and would encourage any prospective patient to try and not to place excessive importance on survival statistics but instead carefully take into account their own doctor’s advice, potential risk and rewards and the real world experience of others with this miraculous process.
No decision an MPN Patient makes is more life changing than a stem cell transplant. My situation is different than most in that the INFN I am taking for my MF is working well. I have been stable since starting the INFN after my diagnosis of MF back in the summer of 2012 and have no fatigue. I exercise and mediate daily and have a career and love it.
Yet on Tuesday May 2nd as I sat in the waiting room at the Stanford Hematology Clinic with my Wife Mary Jo I was more anxious than normal. I was on edge. I had never had a full molecular panel done and I was hopeful I would not be told that I had the markers that would lead my Doctors to recommend a SCT.
There was already some pressure to have a SCT because I was doing so well. I would be rid of my disease for good, my friends told me. But I knew I could also lose everything I had with a SCT.
When Dr. Schrier arrived in our room he seemed to be an especially good mood that day. I relaxed as I felt I was going to hear news. And as he rattled off the CBC counts and the results from the BMB I got the news I was waiting for. Last months BMB showed no change from 2012. The molecular panel showed no progression of the disease and all looked good. Ok so where was the extended molecular panel? As I waited I was finally informed of the news. Stanford had not run the extended panel test. Dr. Schrier said they would use the blood from this morning and send it out. Even he felt confident the news would be good.
Friday morning there was an email in MyHealth folder with a full report. I quickly opened the file anticipating more good news and it was not good news. I had
tested positive for the marker ASXL1. All of the blood drained out of my body, I was devastated. This would now require me to have a SCT based on what my Doctors had previously stated.
I had twenty-eight years to prepare myself for the day when I needed a SCT and yet I become unhinged from reality. My mind raced like Greyhound chasing a rabbit. I descended in to a dark, dark hole. Death was on my doorstep now and I knew a SCT had huge risks. The conversational theme in mind was SCT I will never be the same man I am today. Work will be nevermore. Life at this very moment had been altered forever and this Captain had gone down with his ship.
My new business would need to be closed. How would I tell people what happened? How would my kids this news? The life I had promised my wife would no longer happen. How could all of my test results been so good just a few days earlier and now I am d pondering the very end of my life as I had come to know it?
Over the next 48 hours plus I ceased to exist. This disease had won. I got down on my knees and conceded defeat to this insidious beast.
Tuesday morning at 9:15AM in the morning my cell phone rang it was Dr. Schrier. He was calling to review the results with me as he had promised. More doom was about to reign down upon me I could feel it.
He began by telling me reading and understanding the results from a molecular panel are very challenging. He had brought Stanford’s Molecular Team in to analyze the results. Wow this was more serious than I had thought. He explained to me that while the test had shown I had the ASLX1 marker it was not the full version but a variant of the ASLX1. This was good news. He went on to say that the Molecular Team isn’t 100% sure I have the marker as page four of the report lists it as an artifact, which means I could have it or I might not but that they will need to have yearly BMB’s to more closely monitor the situation.
I dodged a bullet for now. While I am not fully recovered from this shocking experience or when I will be my view as evolved on how I think about my MPN now. As patients we have more access to information now than we have ever had. This does not mean we have the knowledge to understand how truly complex these diseases are.
While I hope a new drug arrives on the scene and I can avoid the SCT I look at this latest event as a fire drill for right now. I must be better prepared mentally for the possibilities of how quickly our conditions can change going forward. I am now more aware of the fact that a BMB or CBC are just one part of the equation and that markers needs to be watched as well. Ultimately I am no closer to making a decision on whether I will or wont have a SCT, even if the Doctors recommend it.
Back to CHRIS…
So now you have input from a number of survivors, many of whom are contributors to forums to help others. While it is a difficult choice to make, the no-action option has a definitive outcome. There are other hurdles along the way as a matching stem cell donor (thank you Sarah Gardner) has to be found. Sometimes a sibling (1 in 4 chance), someone on a worldwide registry (MUD – Matched Unrelated Donor) or even a half match from a family member (HAPLO – Haploidentical transplant) can be possible. Rigorous health checks are required to ensure your organs can handle the SCT process before you can get the go ahead.
Yes, risks and decisions. SCT is not available to all. SCT does not work for all. But SCT is working for many who started out with various types of Leukaemia. It is a difficult choice whether to go ahead as the treatment can shorten life as well as lengthen it. But it is an option that has worked for many and when successful, the prize is life.
Affording a SCT in the era of a battered US medical care system. (Beatrice on the Bottom Line)…
For years, in social media, Beatrice agonized over undertaking her stem cell transplant. A key issue was her boys, Jeremy and Brian, and their future if she were unsuccessful. Another was locating the right center and arranging for financial coverage.In all of these, she was creative and successful. We asked Beatrice to be as specific as possible in sharing her experience in managing the financial burdens of her stem cell transplant. Almost alone among industrialized nations, the United States does not offer universal health care. And the compromise version, the Affordable Care Act, is currently under attack.
Do check back to see Marina’s contribution on SCT costs and how she and her family managed things.
Once the agonizing SCT decision has been made, getting ready for it is a daunting task. There are so many aspects to the preparation, logistics (especially if you have kids), putting your affairs in order, reviewing/updating your trust/will, buying/preparing enough food and supplies for your home while you are away, and the list goes on and on. In addition to the overwhelming anxiety and fear of all the preparations, the financial aspect is a very stressful one.
As a single mom raising my sons on Social Security Disability, that was a major source of stress and anxiety.
I was very lucky, by a pure stroke of luck, to have a health insurance that covers the transplant quite well. I am on Medicare, but with a Medicare Advantage Plan (MAP), AARP Secure Horizon United Health Care, which means that Medicare pays United Health Care to cover me, but they do not handle any of my care, so I fall entirely under United Healthcare’s guidelines. Fortunately, they cover SCTs, and I am so grateful they were able to make an agreement with City of Hope to handle my care. It is an HMO, so I pay a flat fee, not a percentage of the cost, which makes a huge difference.
As a very important aside, if you think an SCT might be a possibility at some point in the future, even if you are hoping to not have to have one (as I did for many years), I would strongly encourage you to research now, and to find out what your insurance does and doesn’t cover. If you have a PPO, I recommend looking into an HMO, but not all HMOs are equal. If you have straight Medicare, I know they recently started to cover SCTs but only under certain circumstances, I’d be very careful staying with straight Medicare,even with the “Cadillac Plan.” My friend Marlene died because they would not cover it, I will never forgive them for that.
I did have to make many phone calls to find out whether and how muchmy insurance covered, and nobody seemed to know anything for a long time, but once I finally got into the system as a transplant patient, they were on top of things, I was assigned a case manager, social workers, and received multiple calls on a regular basis to make sure everything went smoothly.
In my case, the hospital cost me $175/day for the first 10 days, and the rest of my stay was covered 100% no matter how long it was. My doctor allowed me to have my chemo treatment as an inpatient so that I wouldn’t have to pay for lodging during the week of my chemo treatment in addition to the co-pay for the first ten days of my hospital stay. I also would have needed a caregiver during that time, which I did not have.
My clinic visits cost me a flat copay of $ 10 each, which covers the blood works, all types of transfusions or infusions, and my doctor’s visits, as well as my bone marrow biopsies (under full sedation, I told them I would not do it any other way!).
My insurance also reimbursed part of my expenses for a year from the time I started the process of seeking second opinions, including my living, medical, travel expenses to the doctor’s visits, for my caregiver and me. Altogether they reimbursed me around $ 4,000, which helped a great deal.
If your insurance does the same, I would encourage you to get very organized from the beginning, preparing ahead of time labeled large envelopes for each category in which to save all receipts as you go (don’t wait until you have time or feel better later, it is a very long and overwhelming process).
I was strongly encouraged to start a fundraiser online even though I was extremely uncomfortable with the idea. I reluctantly did so, and it was a lifesaver! I had no idea what amount to ask for and I put $ 15,000 thinking it would be more than enough; as it turned out, it wasn’t. It helped me pay for my pre-SCT teeth work (and the bridge I had done afterward for a tooth we had to pull out two weeks before and because of the SCT – over $ 6,000 altogether!), the apartment rental in Los Angeles when I had to stay near the hospital upon discharge, food and living expenses for my caregiver and myself, in addition to my regular expenses for my condo and my kids, my medication, etc…
The medication cost was a shock to me. Sitting in my bed, before my discharge, I was delivered my first month supply of medication, and the co-pay was close to $ 500! One of the anti-rejection drugs cost over $200 co pay. After spending hours on the phone (the last thing I wanted to do then!), and with the help I received from the hospital’s social worker and the extraordinarily helpful pharmacist who went above and beyond to help me, I found an organization, called Simple Fill, that cost me a flat fee of $ 45 per month for one medication which they mailed to my home free of charge. That helped a lot, but the cost of the medication is still today, 19 months later, over $ 250 a month.
With the help of the Social Worker at COH I applied for a grant with the Bone Marrow Foundation, they approved a grant in the amount of $ 1,600. I could have qualified for one from the Leukemia Society, but there was a problem with the website and, as silly as it sounds, being the only adult to take care of all the bills, paperwork, household, kids, cat & dog, etc., I was so overwhelmed, exhausted, and forgetful, that I never got around to calling them in time, and I missed the deadline. I can still kick myself for it, but there is only so much I can do on my own, particularly after the SCT when all you want to do is curl up on the couch and not move all day.
I also recommend that you have all applications to the various foundations to which apply for grants ready before your SCT, and have a family member or a friend, if possible, to be in charge of filling them out and submitting them on time.
My medical costs are around $ 6,500 per year; at this time I spend around $ 250 per month in medication.
Another expense to consider is a cleaning person, at least for the first few months, as you are not allowed to clean for awhile after the SCT.
I would estimate that, not counting gas and mileage to go to my clinic appointments (twice a week at first, now I am at once every four weeks, I live two hours away), the first year of my SCT out-of pocket cost was around $17,000.
Editor’s note: There’s a partial list of helpful financial resources on the MPN Support page – https://mpnsupport.com/financial-insurance-co-pay-assistance-for-cancer-patients/ — including funding resources used by patients to generate contributions.
For further exploration:
Dr. David Steensma and Dr. Claire Harrison answer the 11 critical SCT questions https://mpnforum.com/sct-roundtable-steensma/
An international panel of MPN and SCT specialists — Drs. Richard T. Silver, Ruben Mesa, Vena Fauble, Tsipporah Shore, Nicholaus Kroger and Donal McLorgnan lift the veil on SCT medical realities. Includes Q&A plus a video. https://mpnjournal.org/considering-stem-cell-transplant/ On MPN stem cell transplantation
Transcription of a patient Facebook forum on MPNs and SCT. https://mpnforum.com/facebook-forum/ Forum meets Facebook
Who goes there? Reflections on SCT: How T Cells come membrane to membrane with aliens in fighting disease and launching GVHD. Microvilli…(Hint: The pimples on the surface of cells aren’t just there for beauty.)
Opinion and the hard facts, data, statistics and charts about SCT outcomes and comparisons with clinical trial options. https://mpnforum.com/clinical-trial-with-eyes-wide-open/