Good morning!. Here’s your copy of the MPNforum Subscriber Edition
Farewell to Joe…Dr. Ross Levine on CHZ868… A song for Harvey… JAK chat over coffee…. And TSR: Is interferon safe for JAK negative patients?….Dollars for Docs, Sunshine lights up drug companies’ payments to physicians…What PRM-151 was waiting for…CR&T offers weekend bonus to registrants….plus news & features & 211 patient-recommended hematologists.
Tomorrow, Wednesday, September 16, this will become the home page for www.mpnforum.com but meantime the “Return to contents” link at the bottom of each story will not work. Please use your back arrow.
More importantly… if you note any errors or glaring typos please let us know at ourMPNforum@gmail.com so we can make the correction before general publication. Enjoy the issue… https://mpnforum.com/autumn-2015/
Comments on: "The Full Autumn MPNforum – Subscriber edition" (3)
About 4 1/2 years ago Dr. Silver was telling me that Pegasys would help keep me stable. It can keep blasts down and help shrink my spleen. He said it was only effective in early MF. I am Jak negative and MPL 515k +, and Pegasys has stopped bone pain, helped shrink my spleen, and reversed my hip pain. I do take it in combination with Jakafi, but I did see these results before I started the combination.
I know of several Jak negative MF responders besides me, and since this study did not know the mutational status of the Jak negative patients, it only tells us that Jak2 + patients seem to respond well. Non responders may progress as MF usually does, but we can’t say they are harmed in any way.
So I’m not sure why Silver released this. Is he now against Interferon for Jak negative patients? What would he tell me if I went to see him now? Why not test his 12 patients for other mutations?
Interesting that the article states “Cytogenetic analysis documented a normal karyotype in all cases” Isn’t this a bit unusual that all had a normal karyotype?
What happened to the disease stability that Pegasys promised? Why is stability no longer a goal for drug trials? I would love to see reversal of fibrosis and improving counts, but I’m happy with the stability that I have.
The article’s doctor question email didn’t work….can you forward this to the doctor’s questions department? :-) Thank you!
Hello, I am a 53 year old single Mommy and VPK teacher living in Stuart Florida. I was diagnosed with ET last year and my highest platelet reading has been 1 mil two hundred thirty six. At this level I feel symptoms (I do not feel well at all at this level. A doctor in Miami said I shouldn’t feel symptoms but I DO)…almost, for the lack of a better description as if I am lacking in enough oxygen within my system. I will feel very fatigued at this level and can, at times, feel a heat and or tingly sensation down my arms. Before I started taking a low dose baby aspirin morning and night I would have weekly ocular migraines and at times would get a numb sensation in my right pinky and right foot. They tried me on Anagrylide and Hydroxurea but I am allergic to them. Now I am launching into my question as well as asking any advice about my current life with no meds that seem to be in my back pocket in the event my platelets do escalate to an intolerable range. (What would I turn to?) I am VERY excited about the prospect of CRISPR …since it has cured a mouse….What is the medical community’s opinion on it’s possible availability in the not so distant future? I am praying for it to become a reality in time for me….for all of us….to resume normal living. I would love to be a healthy Mom for my kids…ages 24, 20 and 17….and two little Doxies who love Mommy too….Thank you! Lacey Fox
Lacey the MPNclinic is published only sporadically but you have access to all the prior questions and answers indexed at https://mpnforum.com/six-clinics-index/ You can also open that page and do a search for Fatigue (Control F) and page through dozens of questions and responses on that and related symptoms.
Mostly, however, you need a trusted MPN specialist who can provide you an experienced workup, examination and help you sort out your path forward. Many with ET live perfectly normal, long lives. I am seriously concerned that your hematologist considers fatigue not to be a “normal” debilitating and serious symptom. It’s as if he or she had never seen any of the important work done in this area by Dr. Ruben Mesa, Dr. Robyn Scherber and others. And while your platelet levels are not necessarily dangerous most hematologists would treat at the 1 million or 1.5 million level with a short course of HU or anagrelide. Your low dose aspirin is a basic standard for prevention of thrombosis or hemorraghic events but you do need to clearly understand what’s happening in order to figure out a therapeutic plan. If it’s possible maybe you could consult with a known MPN specialist with deep experience and a hematopathology department that has seen many MPN cases. Thereafter you can be cared for by a local clinician who might periodically consult with the specialist as needed.
And yes, CRISPR is coming, perhaps in two or three years? The MPN Research Foundation and MPN Genetics are sponsoring a seminar at ASH in December bringing together hematologists, transplant specialists, biologists and genetic engineers to explore the use of CRISPR/Cas9 editing of stem cell transplant patient blood for autologous transplant. Work is already underway in CRISPR editing of HIV and sickle cell.
Good luck and take charge of your health,