Saturday, April 15, 2006

A Setback

Unfortunately things did not turn out well at my 9 month evaluation. A blood test on Monday revealed an elevated IgA (the type of protein produced by my Myeloma) and the Bone Marrow when viewed on Wednesday confirmed definite early recurrence. In retrospect, those "few lambda staining cells" that had me worried (January 30th Post: "We all Live in Limbo") were probably an earlier indication of this.
Needless to say it was a kick in the teeth for me, and everyone close to me. I think we were all pretty convinced I had beat this! Even in my less optimistic moments I had expected to get at least a year or two out of the transplant. Well, I guess not!
On Thursday I met with Dr. Bishop. He has an aggresive plan to hopefully "nip this in the bud". First I will undergo two courses of Velcade and Decadron. I was on Velcade prior to entering the NIH protocol. My Myeloma was very responsive to it and I tolerated it well. After that, with my myeloma then at a presumably minimal level, they will give me a Donor Lymphocyte Infusion (DLI) - lymphocytes taken from my sister Nancy - on June 22nd. This is a commonly used technique to get relapsed stem cell transplant patients back into remission. I was told: "30-50% success rate, the majority of which are longterm". Downside: "50% chance of Graft vs. Host Disease (GVHD)". That's the plan. I'm reasonably optimistic it will work, but I'm a little more sanguine now.

Since the Velcade is given over a two week period once a month, and there's some flexibility, we plan to procede with the trip to France - I'll complete the first course before we leave, and start the second immediately upon our return. However, this turn of events has made us reconsider the Australia trip in August. With things now somewhat up in the air, we've decided to cancel that trip. I don't want to miss any part of another summer in Sandpoint.

I feel well, so I'm still hoping to resume some part time work in June. To get my credentials up to date at the Hospital I'm completing an ACLS (Advanced Cardiac Life Support) recertification course this week, and next weekend I'll attend a 3 day intensive workshop on Difficult Airways in Las Vegas. That should keep my mind occupied!

Mary Catherine seems to be handling it well. Right now she's making jambalaya and a special chocolate cake for my belated birthday celebration this evening with friends (Fisher's) coming up from Moscow. I still have much to be grateful for.

12 Comments:

At 6:17 PM, Anonymous Anonymous said...

Sorry about those lazy stem cells, brother. I promise to whip those lymphocytes into shape with lots of anti IgA .

I'm so glad you are feeling well and are off to France. I hope that this Velcade cocktail doesn't ruin your appetite for red wine and oysters.



love
Nanip.

 
At 8:10 AM, Anonymous Anonymous said...

hugs hugs to my big brudda... SIGH ... we were all riding high on your vigorous (and for some of us - already exhausting - )return to full health! But this has gotta be just a temporary setback - I know you'll rally fore and break all the recovery records. Cause you ARE the SUPER BRUDDA...
Let me know exact dates and times that you fly through NYC so that I can transport and/or try to entertain you en route from JFK to/from NWK.
Big hugs and more hugs

The Brat (aka the OTHER sister)

 
At 11:40 AM, Anonymous Anonymous said...

Dear Dr. Chanx: This is just a temporary set back. Skiing and chanx next winter. Regards to Ted and Joe. I am getting shitty-cocked on red wine, but no oysters( aphrodisiac) this evening. Regards, Dr. Sh***g.

 
At 5:58 PM, Anonymous Anonymous said...

This reminds me of the old Judy Collins song "The Circle" or whatever its title. I will inform the folks and get the prayers back up to snuff. Isn't plant food what you need to put on the stems? It the right time of year anyway. On this day in 1863 Baha'u'llah wrote the "Surih of Patience"(Suriy-i sabr) also known as the Tabet of Job. May you win the test of patience and perseverance.
Peggy

 
At 9:59 AM, Anonymous Anonymous said...

I'm sorry to hear of the setback-- but whatever else, I admire the way you are handling this; I hope I could do as well, though I doubt it. Every day is a gift, I guess, as you and MC clearly understand.
David

 
At 10:10 PM, Anonymous Anonymous said...

Dear Phil and Mary Catherine,
Well, that news is not what i was hoping to hear. But 50% !!! I have a friend who had 10-15%, and that was years ago, and he's doing great, so hang in there!

By any chance are you guys going to be any where near Seattle between April 30 and May 9? I'm coming to visit the folks, and hope to see as many of you western folks as possible.
Let me know, and keep your spirits up. I'll
tell my psychic healer to send some healthy spirit guides your way.

Love to you both.
Elizabeth

 
At 7:51 AM, Anonymous Anonymous said...

Hi Phil & MC: I keep reading the blog over & over again. Yes, a real kick in the teeth for you!
But I do know a man who did not acheive full remission after BMT. His Drs injected him with his donor's stem cells just for the purpose of giving him acute GVH. That put him into full remission. He does suffer from more serious side effects than I do, but is still able to work & play with his young son. He did not run the Boston Marathon, but his wife did in his honor and raised about $20K for Leukemia Soc.
So give this new treatment a chance and keep us posted.
Chanx again, Karen W.

 
At 1:29 PM, Anonymous Anonymous said...

Dear Phil,

Well, horse pucky...Here's hoping that red wine, oysters, chocolate and French amour can romance those stem cells into bloom again. Keep yourself rested (tough for YOU to do)and indulge! Hugs to MC.

 
At 7:52 PM, Anonymous Anonymous said...

Sorry to hear of your setback. You don't know me but a mutual friend mentioned, Karen S., mentioned your situation and everything you have been through. I'm sure you are very aware of all the various treatment options in the literature. If you missed it, a good review was published in Jan. 2006.

MULTIPLE MYELOMA
Novel Treatment Approaches for Patients with Relapsed and Refractory Multiple Myeloma
R Sinha, S Lonial, Oncology 2006 7 (3): 246-256

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16507205&dopt=Abstract

The company I work for is working on various kinase inhibitors and has had success in clinical trials for the treatment of acute myelogenous leukemia but, to my knowledge, they haven't done any trials for multiple myeloma.

Stay positive, you have a lot of people wanting you to win this battle.

Dennis L. Coleman, Ph.D.
Vice President, Research & Development
Cephalon Inc. - SLC Operations
4745 Wiley Post Way
Salt Lake City, Utah 84116
Ph. (801) 401-7480
Fax. (801) 595-1406

 
At 7:18 PM, Anonymous Anonymous said...

Phil,
You may want to check this out as a potential option:

http://www.clinicaltrials.gov/ct/gui/show/NCT00242827;jsessionid=311DE1A391C0C724079C5C5EED8EFF5F?order=10

Good Luck,
Dennis

 
At 3:45 AM, Blogger Lane said...

hello there!! hope all went well or is going well in France. I have not written on the blog because I have been to upset and didn't know what to say... However, you know I love you both and wish the best for you. Maybe this will cheer you up !!! Go to this web site and take the test. Let me know what your score is... I will tell you that Dr. M. got 17 out of 20.... Steve H. got 19 out of 20. So far he is beating us all!! Good luck !!!

www.c4wkgOblin.com/breasttest.html

 
At 6:13 AM, Blogger Lane said...

Okay !!!!
When are you going to blog again....Stop and tell us how much fun you are having.... I live vicariously don't you know!!!

Hope all is well !!!

love,light and laughter...
lane

 

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