Tough decision coming soon.
 

I will be having my 12th BMB next Wednesday. Then comes the really tough decision. I am back on Vidaza (that is what I was on before the SCT) and another pill called Sprycel. It is a rough go (the Vidaza is fine, the Sprycel is rough). I am guaranteed an eight hour headache every night, some nausea and weakness. Both of these medicines lower blood cell counts. My decision will be to go back into the hospital at OHSU for 30 days of chemo and maybe get six months or take a chance and continue the Vidaza and Sprycel which might work for 3-10 months. I can’t stand the thought of going through the chemo for 30 days in the hospital. It is shaping up to be a lose-lose situation and I have never liked those.

Any suggestions? We do have the "death with Dignity" law in Oregon which is worth consideration.

Bailie,

I am sorry to read of this turn of events and will pray that Vidaza works for you.

Are you still on cyclosporine? I've read that too much cyclosporine post-transplant can lead to relapse in some SCT patients.

I have never been on cyclosporine. I was on tacrolimus until a few weeks ago.

bailie,

This is hard news to hear. The tough decision you face is about quality of life, not just how many months the statistics say that patients have with this treatment or that treatment. Is the Sprycel really worth it? Perhaps we can't answer that questions without a crystal ball, but doctors sometimes do battle with a disease without considering the person involved. We care about YOU.

Are there people or departments at OHSU who you can talk to about this? Your hematologist may not be an expert on pain and symptom management, but perhaps palliative care help or consulting is available somewhere within the institution.

Have you gotten a second opinion about your treatment choices? Hearing from another doctor may help you decide on the best path forward.

Heart is breaking again!
 

Hi, Bailie!

I'm so, so sorry to hear your news! You have always been so knowledgeable, supportive, and compassionate to everyone on the forums, and your story up to this point seemed so very encouraging!

I wish I had viable suggestions for you, but I know with all of your understanding of this horrible disease and with the incredible kindness, generosity, valor, and dignity with which you've lived your life that you will make a decision that will be the best possible one for you!

You are an amazing person who has made a big difference for so many of us! I am hoping and praying for a much better result on Wednesday's BMB and for all the strength and wisdom you need right now. Sending hugs and hope your way!

Jordan

Hi, Bailie!

I'm so, so sorry to hear the latest turn of events. I wish you the best of luck on your upcoming BMB.

One size does not fit with advice so I will tell you what I would be thinking in your situation. For me quality of life is much more important than quantity of life. If I were told I could extend my life a couple of months if I would repeat my 2 months in the hospital, I would go home and fight as best as I could. "Death with Dignity" would be the last thing on my mind. I am too much of a fighter. I would only consider it if they were sure the end is near and I was in un-treatable pain. I would not take any medication that dramatically increased discomfort. I would investigate a hospice. I understand many people have positive experience with that form of care. Fortunately MDS is not a really painful disease. Treatment and infections cause most of the discomfort.

I would not give up without a fight. Have they ruled out DLI or another transplant?

Ray

I really respect and appreciate the advice that all of you have given. You realize exactly what I (and we) am/are going through. I do have considerable support at OHSU. I have full faith in my doctor(s) and advisers. They do want the best for me. My primary wants to make sure that they do everything possible to fit what I want (quality and/or longevity) out of life. The choice is the thirty days (15 days Flag-Ida followed by another 15 day cycle of Flag-Ida) followed by a DLI. The DLI definitely increases the percentages (2 yr. survival of 21% compared to 9% without the DLI. They are checking at this time to see if my donor will go along with this in case we go that route. I have terrific family support which helps so much.

Thank you so much for your advice and compassion.

Bailie, I wish I could be of some help,your situation does not sound like fun at all. Have the doctors indicated that your side effects may lessen after you have been on it awhile? That frequently does happen with many drugs. Have they considered altering your dosage at all? As you know, a drug holiday can also help sometimes once you've been on it a while.
Mags

Bailie,

I don't envy the position that you are in by having to make decisions that sacrifice quality of life for treatment. That being said, I am with Ray on this one that if you have the physical, mental, and emotional capacity to go in for the fight, that I would be swinging until the doctor says that there is no chance of recovery, and that might not stop me there.

Neil's question about Sprycel is a very good one. Do you have any data on whether it is worth the headaches? Literally? There are a couple of clinical trials that have been successful at lowering blast counts and improving blood counts pre-transplant using HDAC inhibitors in addition to Vidaza - I think the drugs were Pracinostat and Vorinostat (sp). As I recall, the side-effect profiles did not change much from straight Vidaza, but the response rates were exceptionally high and cleared the path for transplant, or in your case maybe a DLI.

Getting a second professional opinion may help you with choosing your next path. Obviously most of us on the forum are not doctors, but we do understand the difficulty of the decisions you have to make.

You are very strong, attitude and all, and ultimately it is your strength that will carry you through.

You are in a very difficult situation, Bailie. I'm really sorry to hear that the Sprycel is making you so miserable. Quality of life is very important. My thoughts, prayers and support are with you, no matter what decision you make.

I am really sorry to hear this, Bailie. It is a question I have often thought about myself, having gone through all that I have, whether I could do it all again! Early days after my transplant, I didn't necessarily think I could. It is a tough decision, I am glad to hear that you have a great support system & doctors to help you find the right decision. I will be sending you positive vibes from over the seas that Wednesday's BMB brings some better news and clarity for you. You have been so strong so far, I feel there is still a bit more fight left in you yet. Xx

Baile,
I too want to express my admiration and support. You have been through so much and it continues - all the while helping others when you can.
I wish you the very best. I know that you and your doctors will make the right decisions for your well being and quality of life.
God Bless,
Sally

Thank you Sally.

I just had my appointment concerning relapse after SCT and future plans. The good news is that the first cycle of Vidaza and Sprycel really affected my blast count. My blast count at relapse and just before Vidaza and Sprycel was at 33 percent. Following the first cycle the blast count had dropped to 5-10 percent. We will continue with another cycle of Vidaza and Sprycel and then do my 13th BMB. My doctor was very encouraged (as was I) with the rapid response of the Vidaza combination. She is still leaning toward getting the blast count down further and then doing the Flag-Ida chemo followed by a DLI. She is still talking that a "cure" is still in the cards. I just have trouble getting excited over 30 days in the hospital with Flag-Ida chemo.

I did just find a Phase I trial that is doing 2 cycles of Vidaza followed by a DLI then repeating for cycles 3-4 and then repeating a DLI after cycles 5-6. It is interesting that after all these years with Vidaza no one has developed a good plan that generally works. It is good that they keep trying.

That is very good news bailie! When is your next round? I hope your 13th bmb shows encouraging results.

Tracey

Next cycle (7 days of subQ shots and break of 21 days) of Vidaza will start next Monday. We went 28 days this time to give neutrophils more time to recover.

Tracey, how is the Vidaza treating you? Remember that the anti-nausea pills can cause constipation and can be very a very serious problem.

Hi Bailie,
The first round went okay. Not too much problem with constipation yet, but I am watching for it. It did set off an episode of IBS, but I was able to take Bentyl for it and it stopped pretty quickly. My main issue was the bruising, redness and pain in the abdomen from the shots. Hopefully that won't be as bad next time. Thanks for asking. :)

Tracey

Bailie,

Great news on the first round of results. Keep looking for the treatment that sounds right for you as it sounds like you have a little time before committing to the flag-ida approach.

Unfortunately relapse and protocol don't collide often in the MDS universe, so you are kind of on the leading edge of research and treatment. I admire your strength and courage throughout and continue to keep you and your treatment success in my thoughts daily.

Dan

Really good news about the blast level Bailie! Vidaza seems to work very well for you and it's obviously been worth the nasty side effects of the Sprycel too. Well done. I hope this leads to a successful DLI.

Bailie,
Never met you but I LOVE YOU, Brother.
Think of you every day.
JOHN

John, thank you for the encouragement. We are traveling a similar route, even having the same nurses at the infusion center. I really hope that you will achieve what we all hope for . You have done so well so far.

Cheryl, the side effects from the Sprycel are not noticeable now. It seems like each day my body adjusted. At first I was thinking I couldn't handle the 8 hour headache each day, but now after about 20 days I don't have the pain. That is a real relief.

Dan, how have your blood counts reacted to these post SCT cycles of Vidaza? My WBCs (1.0), neutrophils (0.25) and PLTs (20) have really taken a beating after the first cycle. They (1.4, 0.4, 41) have gone up each week before starting 2nd cycle. I am sure that the Sprycel also influenced the expected drop.

Thank you, I wish the very best to each of you. I appreciate that we can learn from each other.

Bailie,

my vidaza cycle had a general pattern of the week of infusions numbers were stable, second week started to decline, third week hit the bottom, week before treatment started coming back up. I would hit the high point on about the third day of treatment.

My platelets and white blood cells took a beating - example would be that my platelets generally hit about 120k at the high point, and then would drop to between 30k and 50k, white blood counts would go down as much as 90% from normal range down to fully neutropenic - low point of .4. They counts always recovered and were generally stronger after each cycle.

Interestingly, HGB would only go from 10.5 or 11 down to 9.5 or so. We are all of course different, but this is what happened with all of the cycles I took post transplant.

Dan, that is similar to my numbers including HGB. I started the Vidaza at 11.4 and it bottomed out at 9.4. I have noticed that I am weaker starting about the 3rd or 4th day of shots.

I so admire you brave, inspirational guys! Thanks for posting.

I guess I will be paying the price for a relatively event free post-SCT. I had the relapse at about Day+230. The relapse took the form of a very rare Philadelphia plus AML relapse. I have reached the end of the algorithmic flow charts at my current provider I believe. Many of these doctors can go a whole career without seeing this. Hopefully none on this forum will get this. I still feel pretty well and golfed 18 holes yesterday. Today is Day+300 since SCT.

http://ajcp.ascpjournals.org/content/127/4/642.full.pdf

Bailie,

I am sorry to read the news about the rare AML/CML. Do you have a treatment plan that you are working on or are you looking to clinical trials at this point? I have been following your successes and challenges throughout your transplant process and am hoping that we are just seeing a bump in the road until we get the right solution for you.

Stay strong, we are here to cheer you on.