Where after Vidaza failure?

[kris]

My husband has failed Vidaza after 30 months. A great run but what next? He is transfusion dependent q 2 weeks. It has been recommended he undergo a stem cell transplant. I want to assist in his decision making. How to proceed?

[Birgitta-A]

Hi kris,
There are researchers who suggest SCT when Vidaza fails. If your husband is fit enough for a SCT that would perhaps be the best way to go.
http://ash.confex.com/ash/2010/webpr...aper28759.html

Otherwise there are many drugs he could try. I always recommend Kirby Stones personal profile and later posts if you want to read about a patient who is tough and has a caring dr.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006. Tx dependent from dx Received 142 units of PRBCs. Thalidomide with good result since June 2010.

[DanL]

8irgitta is spot on here. after vidaza failure, if a patient is a good candidate for sct and has a match, sct is indicated. if not, then the next options include a wide range, including dacogen, clinical trials, and depending on some of the marrow characteristics, maybe even immuno-suppression.

I also recommend looking at kirby's history. kirby and his doctor have tried several combinations over the past many years to good success. it is an inspiration.

[bun]

For 2 to 2.5 years, my husband had wonderful results with Vidaza. He is still feeling good, but his platelets have been falling around 10,000 per month for the last few months. About 1.5 months ago the decision to move to SCT was made. We knew this would eventually occur, and knew 3 sibling matches were available as donors.

We are hopeful going into transplant. He is feeling strong and optimistic. Chemo conditioning starts in another week. We are getting on this ride and hoping for the best.

[Neil Cuadra]

Beth,

It's too bad that Vidaza couldn't continue to sustain Tom's counts, but how great to have multiple matched siblings.

We wish you the best of luck and we'll keep you in our thoughts. Please let us know how it goes. I'm sure you know to expect that some days will be better than others -- it's the nature of a transplant -- but to keep your eyes on that ultimate goal: a complete cure.

Will Tom be at the Mayo Clinic? If so, will you stay there too or will you commute to Rochester?

[kris]

We are off on our adventure. The good news is R has 2 10/10 sibling matches. The anticipation is tough on everyone. It's like waiting for Christmas. If all goes well we will be at Moffitt cancer center and starting conditioning the last week of August. Wheeee off on this roller coaster we go. Optomistic, hopeful and looking forward to the future.

[Neil Cuadra]

kris,

Congratulations on your husband's two matches. After all the years he's had MDS, you'll finally be going for a cure.

If the transplant goes like most of them, it won't be a cakewalk, but you'll get through it. Your natural optimism and determination will be a big benefit.

[mausmish]

Congratulations on the perfect matches - it can be a rough ride but well worth going for a cure! Best of luck.

[kris]

Thanks for all the support. He is weaker between transfusions. Now dropping to Hgb 6.2 and plt down to 16,000. Just doesn't have the stamina. But he keeps quoting Dylan Thomas. So that's a good thing.

[kris]

Well another setback and delay before SCT. The day before Vital Organ testing My husband had a GI bleed, Hgb down to 4.5!!! OUCH!!!
it also was noted that he has a pneumonia in his lt upper lobe. Now PPI and antibiotics. Everything is rescheduled for 3 weeks from now.The good news is this was found before going to transplant.

[kris]

So sorry about being remiss in updates.
I read others post and know we are fortunate.
The stress of living six years with MDS was tough. The ups and downs. I must constantly remind myself this is a chronic disease that is specific to each individual no two cases are alike.

Vital organ testing for SCT was completed August 30th.
Admission for SCTransplant was scheduled for September 16th.

This was cancelled after arrival due to the fact his pneumonia had not resolved. A necessary precaution but disappointing to say the least. A broncoscopy did not reveal any bacterial infection. No growth of any type. The question wasa do we do a lung tissue biopsy or treat emperically for fungus. The team decided and Rick agreed to do a months trial on antifungals and then see where we stand. The good news was the treatment was working and the infection was undercontrol, resolving but not yet gone.
His cytopenias were getting worse , could be drug effect as well. Rick continued to require 2-3 units PRBC's and close monitoring of his counnts. Platelets danced between 20-24000. He required and received platelets and responded well.(77000) Also he probably had a reaction he developed what looked like graft vs host on his thighs and back probably 36 hours after transfusion. It was classified as a dermatitis but he immediately became platelet resistant. Additional platelet transfusions drove his counts down. The blood bank did all kinds of testing and matched plt as well with little to no response.

Rick required a PICC line for transplant as a central line/port could not be placed with a platelet count of 16000.

Admitted October 26th for conditioning and November 1st he was transfused his sisters 10/10 CMV negative stem cells. The events of the days that followed can be read at carepages.com "Lifes_an_Adventure" and That it has been. Going into transplant we knew we would be trading one set of problems for another. To think otherwise would have been foolish.

Rick was fortunate to be discharged Thanksgiving Day. Yes we had a lot to be thankful for. Today we are still living within minutes of the hospital and Rick requires twice a week visits to see the team at the clinic. We can't sing praises high enough for the staff. Rick has been treated well.

We celebrated Christmas and look forward to the New Year. Also looking forward to day 100 but that is just a number...we know we need to look beyond a year. Today it is still one day at a time.

Life is not perfect but we are hopeful for a positive future. Rick's 30 day BMB was clear of any MDS and chromosone abnormalities! He is 97% donor and Tcell count is in acceptible range. At this stage who could ask for more.

[Neil Cuadra]

Kris and Rick,

Thanks for the update. Congratulations on how far you've come and for navigating the many bumps in the road. How great to hear about Rick's successful transplant and the good care he has received (including from you). A clear biopsy is the most welcome news of all.

[Birgitta-A]

Hi Kris,
Congratulations to you and Rick !
Kind regards
Birgitta-A

[mausmish]

That's great news, Kris and Rick. Thanks for letting us know.

[sae36]

Originally Posted by kris

My husband has failed Vidaza after 30 months. A great run but what next? He is transfusion dependent q 2 weeks. It has been recommended he undergo a stem cell transplant. I want to assist in his decision making. How to proceed?

I realize your post was dated from a few months ago, but I want to share this information with you, as you situation seems very similar to my father.

We found this trial:

http://mdsclinicaltrial.com/oncology...ite-locations/

A physician was close by in San Francisco, who enrolled my Dad. He has been through two cycles now, doing well and not as sick as when he started Vidaza a couple of years ago.

[kris]

FYI:Home after 5 months. Rickis day+101! Acute phase is over.
Rick has little to no GVHD. Current symtoms: nail beds soft, sparse hair regrowth, poor appetite. No rashes, no GI distress. Chemo brain greatly improved. fatique improved.....
He still takes fist fulls of pills multiple times each day. Has osteoporosis and low Testosterone. Hypertension and high cholesterol from his Tac and Rapa but all in all life is good. We know it will be months to regain strength, activity level and adjuttments of meds.
We also know we traded one set of medical problems for another ...these are manageable.
we have a gift.
Attitude is everything!

[Chirley]

Hi Kris, good news at last.

I have a question for you. I noticed in the signature that Ricki was found to have deletion13. Was this only found after the Vidaza treatment? Was it a partial deletion and was it p or q?

I'm only asking because I've just been found to have partial deletion 15q which wasn't there prior to Vidaza. My diagnosis has been changed from MDS to copper deficiency bone marrow failure so there is no disease process that could have caused this finding.

I'm not upset that I had Vidaza unnecessarily, Im just looking for answers.

Regards

[mausmish]

Kris,

Happy to hear Rick is doing well! Don't forget to take care of yourself, too.

Karen

[kris]

Originally Posted by cme01

Hi Kris, good news at last.

I have a question for you. I noticed in the signature that Ricki was found to have deletion13. Was this only found after the Vidaza treatment? Was it a partial deletion and was it p or q?

I'm only asking because I've just been found to have partial deletion 15q which wasn't there prior to Vidaza. My diagnosis has been changed from MDS to copper deficiency bone marrow failure so there is no disease process that could have caused this finding.

I'm not upset that I had Vidaza unnecessarily, Im just looking for answers.

Regards

His deletion was a 13q and yes it was present before the Vidaza.
For the many who get told watch and wait. It is not bad to wait. There are only so many modalities available and if one is impatient and rushes to treatment after treatment then there is nothing left when the going gets really rough.
We were 6 years from diagnosis to transplant. Everyone needs to understand the difference between supportive care and active treatment .

my prayers to everyone who is experience this challenge. Thank you all for all your kind words and prayers.