MPNforum Magazine

If you pray, this is a time for prayer.

And if you wonder at the human spirit, this is a time of wonder.

Ian Sweet is failing.

A hero who has spent more than a dozen years on the battlefield of MPN blood cancer, daily counseling and supporting thousands, is fighting for his life. While there is still hope, Ian is running out of options to combat the seemingly sudden onset of AML.

And like his friend and long-time comrade in arms, Joyce Niblack, who succumbed to our common deadly disease, despite his grim prognosis he is still at his post, still sharing his insights with all in his beloved MPN/MPD community.

Set apart by his dedication and knowledge, Ian is equally remarkable for his humor, compassion and civility.  More than words these attributes are deep rooted qualities clothed in his actions and attested to by the overwhelming response to his decline  by his legions of  friends worldwide.

If you do not know Ian, read his  October 22 post to MPN-NET (and CaringBridge)  and be drawn into the band of MPN brothers and sisters of whom he is an indisputable leader.

His post and a small sampling of  the flood of response from our community,  follows.

With all good wishes, with wonder and prayer,

MPNforum

Date:     22 Oct 2012 12:10:19 +1100
From:    Ian Sweet <ian.sweet@HOMEMAIL.COM.AU>
Subject: Saw Haematologist at last; news is not good

Hi friends,
Those of you reading between the lines would have realised that things
weren’t looking good for me last week, when I received the results from my
last BMB, done on 9 October. It clearly showed that my AML is not in
remission, but is very active. While Marie and I were left hanging until
Friday until I could get an appointment with my regular haematologist, we
pretty much knew what that meant. It means a transplant is off the table,
because there are no further chemo regimens to try in order to obtain a
remission.

That means that all we can do is to try to counteract the effects
of the AML in order to (hopefully) stay reasonably healthy for as long as
possible.

We discussed three alternatives on Friday – supportive care only, which
would mean blood transfusions as necessary, plus putting out any “spot
fires” (mainly bleeding or opportunistic infections) for as long as
possible. We wouldn’t have been happy with this because we really want to be more proactive than that. So the alternatives were chemos like azacytidine or decitabine, which have apparently helped some with AML in its later stages, or other chemo drugs which have been known to help.

Our Haem felt that the two named drugs would not be likely to help much, with little advantage over supportive care, and instead suggested that another drug, Temozolomide. Although mainly used for treating brain tumours, it has been shown to help some older AML patients, and our Haem said they’d used it with some success here at the Canberra Hospital. Nevertheless, it is still only a delaying tactic, and to put it bluntly, my days are numbered. Trouble is, no one knows the number, and I don’t want to, except to say that I’ll try drugs such as this to try to maximise the time I have left.

Are we calm about this…. (that word sprang to mind because of a past post by you, Mark!!). Well, yes! Marie and I have known since an earlier discussion, about 6 weeks ago, that the FLAG chemo which failed was my last chance for a true remission. He also spelt out some more of the immense difficulties of a successful SCT for patients with refractory AML, and we knew it was only a slim chance for me. And we didn’t have a good matched donor. A donor had been found, but the match was not perfect (don’t know how “imperfect” it was, and it’s irrelevant now).

So we’ve gradually accepted that there are nofurther major options, and that inevitably I’ll deteriorate at some point over the next weeks to months. At present I feel pretty good, and only need to visit the hospital a couple of times a week for blood tests, to check whether I need a red cell transfusion. I went in this morning, and will get the results of that this afternoon. The plan is to stay on this course until
mid-November, when I’ll start the temozolomide. I think it was a course of a few days, after which I’ll have the usual problems of neutropenia, but it if helps I should be up to enjoying Christmas with the family.

I wish I hadn’t had to share such news with you, but wanted to put you all in the picture. The MPN/MPD communities have become part of my life since 1996, when I joined (then) MPD-NET, and I can’t just suddenly switch off my involvement. While I might be calm, and am in fact reasonably cheerful and getting on with normal day to day activities, it doesn’t mean that I don’t feel emotional about this. As I said, Marie and I have had some time to adjust to this, but there is plenty more adjusted to go, I can tell you. In the meantime things go on almost as normal, and I will post to the list with replies if/when I think my years of dealing with PV might help others shed some light on their treatment approaches.

Oops, nearly forgot. I am about to post more or less the same message to my Caringbridge site, and this may be of interest to some of you who are
looking for updates which I am not likely to post to the list. Go to
www.caringbridge.org/visit/Sweetcan

All the best to all,

Ian (67 yo; PV 1991, AML June 2012)

Date:    Mon, 22 Oct 2012 15:47:39 +1030
From:    Barry Whittle <xxx@OZEMAIL.COM.AU>
Subject: Ian

I am finding it very hard to put words together.  It is awful news, and something that we previously talked about as if in a medical paper.  It is now much more than that.  I am praying hard for you mate.  Have an open mind about things eternal.

Barry, PV, dx 2000

Date:    Mon, 22 Oct 2012 10:34:13 -0400

From:    Vivian Pronin <xxxxxxx@GMAIL.COM>
Subject: Ian

Ian,
Your generosity in continuing to post for our benefit is to Be lauded. Truly, we, who know personally the gravity of the path we share are so grateful,for your continued participation.  I am so,sad and disappointed for you but admire your calm and equanimity in the face of this monstrous disease process.

I have turned to daily meditation, first thing when I awaken to help me maintain a degree of calm and sanity as my disease progresses.  I too live alone, like some others here and turning to the inner strength available to me is a necessity and a gift.  Having a long-term partner must be a blessing at this crucial time.

Your contributions are of great value to us in this unique community and I have no doubt that knowledge fills your heart.

Thank you for showing your courage to us.

Vivian sMF 2009

Date:    Mon, 22 Oct 2012 21:39:05 -0700
From:    susan mcgurgan <xxxx @ATT NET>
Subject: Ian

Ian, my heart is so heavy as I write this,  you were there for me
when Seamus was almost lost to me a few years ago, you gave me
courage during my days filled with so much fear.
Thank you!
God Bless!,
Susan

Date:    Mon, 22 Oct 2012 08:19:16 -0400
From:    Chris Thomson <xxxxx@GMAIL.COM>
Subject: Ian

Ian,

A simple email from you lifted my spirits when I first joined up with this
list serve.
You gave me a positive outlook and a ray of sunshine when I needed it most.
As your journey through life continues you and your family are in my
prayers. I hope you can find comfort in knowing you
have guided so many through their trials, and now I pray that the spirit
will comfort and guide you.

Chris

Date:    Tue, 23 Oct 2012 17:11:49 -0400

From:    Heidi O’Sullivan <xxxx@GMAIL.COM>
Subject: Ian

Like so many others, I am saddened by your news. My thoughts and prayers
are with you and your family. You are a strong, brave man who has been so
kind, thoughtful  and helpful to so many of us. You always gave me hope,
especially after having to go on HU, knowing that you were on it for so
many years. Keep fighting and maybe you will win this battle after all.

Heidi, PV 2002, HU baby aspirin, Crohn’s, breast cancer survivor of 25 years

Date:    Mon, 22 Oct 2012 04:47:26 -0700
From:    gina villareal <xxxxx@YAHOO.COM>
Subject: Ian

Dear Ian,
I had to take a deep breath and compose my self. Reading your update was very hard.
I don’t know what to say except I will continue to pray for you and hope for a miracle.
God bless you Ian, for you have been a blessing to us all.
Gina

Date:    Sun, 21 Oct 2012 21:15:18 -0700
From:    Barbara Beckman <xxxxx@GMAIL.COM>
Subject: Ian

Dear Ian,

Thank you for posting about your illness.  Your wise and calm counsel will
be missed.  Those of us who are also not doing as well as we wish can
appreciate what you are going through.  I am so grateful for all the help
that you have given us.

Blessings,

Barbara Beckman