2nd Opinion and New Results

[Data]

I saw a new hematologist for a second opinion and got the results today. I had another bone marrow biopsy last month and they discovered two new "problems". First of all the found a chromosome 7 deletion (del(7)(q22)); secondly they found a gene mutation (ASXL1). I talked to the transplant team and was pretty overwhelmed. I thought they had said post transplant alcohol was not allowed as was Tylenol. My wife heard that those two items were only prohibited during the 30 days following the transplant.

Does anyone have any clarification from their experience.

Also and ideas on the gene mutation??

Thanks

Data

[Faye R]

I was told NO Alcohol at all at any time so I have gone along with that I did like a small glass of wine in the weekends with my meal, NO MORE for me.
DX RCMD-RD blast cells now 5% after 9 months of Chemo

[tom30]

I read that alcohol has a direct toxic effect on Bone marrow. Never heard about Tylenol thanks for posting that caution, it does come up in a google search - tylenol bone marrow toxicity.

[Data]

The doc was saying that alcohol and Tylenol was bad for your liver after a transplant. ??

[rar]

At +9 months doctor said OK to alcohol in very limited amount. 1 drink of wine or beer for week. I do less. The prohibitions on Tylenol went at the same time. Tylenol is a fever suppressor so if you take they can't tell your underlying temperature.

Ray

[DanL]

Data,

I have had maybe 5 drinks since transplant - prior to transplant, I could see the impact of drinking a single beer on my platelet function - I had about 25k to 30k platelets and did well for a long time, but drink a single alcoholic beverage, and I would bruise like nobody's business, so I stopped entirely.

Maintaining liver enzymes becomes an issue after transplant, especially if you have had a lot of transfusions. Liver toxicity is really pushed by all of the post-transplant drugs and the chemotherapy for conditioning. I have been taking a drug called Actigal (ursodiol) to help keep the enzymes in good shape and have not had any elevated enzymes since transplant. Drinking on top of the drug stress could cause some issues - but i think it is probably negotiable with your doctor based on the evidence.

The Tylenol question is an interesting one as I have been told all along that Tylenol is the best to use. I have been taking percocet (which is basically part oxycodone part tylenol) for my hips for over three months without problem, but we keep monitoring my enzymes to ensure that the toxicity isn't increasing.

NSAIDS like Advil, Motrin, and Alleve all have marrow-suppressive characteristics and can cause some issues - again probably run this by your doctor.

the mutations - ASXL1 - this is a common mutation in hematologic disease. I think that MD Anderson was working with some drugs that targeted this mutation. The deletion of 7q22 is pretty common in MDS as well. The extent of the clone (mutant chromosome) also matters - how many of the cells are affected? Is it 20% or 90% for example. You are probably in that tough decision period about what to do - My doctor told me that you will know when it is time to change paths - for me, it was November 10th, 2013. I had been diagnosed and sat in watch and wait for 3 1/2 years at that point, my energy level, overall feeling of wellness, and morale were all dropping quickly....I knew that it was time.

According to my team of doctors an the others that i consulted with, because there isn't any drug that cures the disease, the presence or absence of mutations is more about information and maybe some minor adjustments to drugs that may be more effective for the particular mutations, but in the end, transplant is the cure....that is until we finally have enough research and drug development to knock out the mutations.

Sorry for the ramble, just want to be sure I hit all the points.

[Data]

Dan,
Thanks for the info. I don't think I am at the crossroads yet. They were just informing me of the possibilities. With the probabilities of success and the side affects I am not sure I would choose SCT. I guess I will make that decision when the time comes.

Again thanks for the input.

Data

[Cheryl C]

I'm like you Data - WW (but without the worry). Don't know whether I would choose transplant now, even if it was the only option left. Apart from antibiotics for infections, I've been pretty much drug free all my life - rarely even take paracetamol. Have tried heavier drugs when I used to get migraines and they make me feel dreadful during and afterwards. Don't know how I would cope with any kind of chemo. Just thankful that I feel normal most of the time after the drop in blasts in 2012.

[Data]

Cheryl,
Thanks. I was surprised to see anyone even come close to agreeing with me on the idea of not opting for a BMT. My feeling is they are "making something (life) worse to make it longer. That doesn't pass the logic test to me. I have degenerative joint disease (DJD) in my neck so I take a lot of Tylenol. I can't take anything much stronger with out getting sick. Maybe a drug addicted mother scared me away from drugs.

Thanks again.

Data

[DanL]

Data and Cheryl,

I wouldn't normally respond to the last post, but wanted to clarify that I think that the watch and wait (hopefully without the worry) is a valid and strong approach and one that I used for several years. Being able to do what we want to do, even at a slightly reduced level is incredibly important.

I would have gladly continued down that path for as long as it would sustain me. I was 40 when I opted for transplant and have 3 children under the age of 18, so we reached that crossover point where even with the potential for a reduction in quality of life, I wanted to be here and take the route that gave me the greatest possibility of watching them grow, go to college, get married, have children etc. Additionally, the two cycles of Vidaza that I took before going into transplant didn't give me much encouragement of getting back to my adjusted MDS normal. I was hoping to be the 5 year vidaza success story that I have read about so that we could give the scientists more time to find a cure.

I think that if the odds of transplant success were any lower than they were in my circumstances, I would have opted for the best way to live the longest with the lowest side effects for quality of life purposes. It is a difficult decision with variable success rates. My decision was made after reviewing the ever so fun but morbid comorbidity indexes and newer research on timing of transplant charts. I have a mildly dark sense of humor so looking at your life as an equation created by a mathematician doctor and conclude that, well, if I take this route I have x amount of time that is a pretty reliable measure, and if I take the other, I may take a year or three or four years off for the potential to be here for 10 or more.

I am a pretty darned analytical person on the whole, but even with the math, all I could do is say - well, I hope that I am on the right side of the equation. On the whole - life has been equal to or better than the couple of months prior to and following transplant. At the time the election was made - I felt like I was falling down pretty fast, so my quality of life was dropping to the point where my doubts about moving forward were pretty well resolved.

[bailie]

So interesting Dan. My situation was that I was feeling well at the time of diagnosis and didn't realize how fast my MDS was moving. I felt no symptoms. Looking back, I realize that I had no time to "watch and wait". Within a month of the "lucky" diagnosis my numbers hit the danger zone and we started on the Vidaza. My doctors told me (and I agreed) that the SCT had to be planned almost immediately. I believe they were correct. What I think I learned was that firstly, everyone is different with MDS (as we all know) and secondly it is so important to act at the best possible time. Waiting too long in many cases can be detrimental for a reasonably good outcome. For me, I had weeks to turn this around rather than years. We just never saw it coming.

On another Vidaza subject .... how long after the shots each cycle do you start feeling "normal"? I feel ok for about two, maybe three, days of the shots and it takes about a week after the shots to start feeling OK again. The shots don't bother me much but I can feel the effect while getting them.

[Data]

Dan,
Again, thanks for your comments. I think one thing that jumped out at me was the difference in situations. I don't know what I would do if I had three kids or were 40. My undergrad degree is in Electrical Engineering and my masters is in Aeronautical Science so I think I am "analytical" also. I have often thought of a "quality of live versus time curve". If you look at the area under the curve I think the area would be similar when you compared a higher quality of life that was shorter in time with a poorer quality of life that lasted longer. I think sometime medicine makes life longer but at the same time it makes it much poorer in quality. I think in the end (no pun intended) everyone has to make their own decision and live (again no pun intended) with their decision.

Cheers

Data

[bailie]

Data, I think it is really important for each person to have a grasp on their particular situation. My situation would not have been "quality of life" if I would have let it go more than a month. As it turned out with the SCT my "quality of life" has been very acceptable. Without the SCT I would not be alive now. I have not felt I sacrificed anything by having the SCT.

[Data]

Bailie,
I find it interesting that you say "I have not felt I sacrificed anything by having the SCT". To me this would imply that your life has gone on as it had been prior to the SCT. Yet you also say ". . . with the SCT my "quality of life" has been very acceptable." Does that mean you life prior to the SCT was just "acceptable"?

For me, MDS has impacted my life and made it close to unacceptable. I am afraid the SCT would push it over the border to unacceptable. I want to be sure to emphasize this is only my opinion! I would never suggest any treatment (or lack of treatment) to anyone. That has to be a personal decision each one of us make.

Cheers


Data

[rar]

Bailie I am in your camp. My morbid math said at diagnosis I had a 50% chance of living 4 months. At my age with high risk MDS RAEBII with SCT I have 56% chance of surviving 1 year and 28% chance of living 3 years. If I survive for 3 years there is an 80% chance of living for another 10 years. My 1st re-birthday is next Tuesday so I made the first check point and have beat the odds on quantity of life. As for quality I did hit some bumps in the road so for the past year I had 4 bad months and 8 reasonably good ones, maybe not as good as pre-MDS. For me, I have experienced no real pain, just uncomfortable. If I were to die now I had a good life so far and I don't expect it to go on forever. It would be nice to die as a happy and healthy 100 year old. I am still satisfied with my decision.

Data, I understand your reluctance to undergo a SCT. It is a risky procedure with about a 25 to 50% cure rate. Almost all transplant patients have side effects of one sort or another. You would be in the majority by not having a SCT as for many reasons about 5% of MDS patients have SCT. I know of people who have survived 5 years on Vidaza with minimal complaints. It is a very personal decision. With your analytical mind you will come up with the right decision for you.

How am I going to celebrate my 1st re-birthday? 3 hour round trip to hospital with 6 hours worth of tests. Fun!!!!!!

Ray day+362, BSEE MSCS, age 74, retired since 1993.

[Cheryl C]

I too totally respect and understand the decisions of those who choose transplant. After all, I have a compatible brother and was preparing for transplant when I had the wonderful and rare reduction in blasts which took me from being on the cusp of RAEB II to RCMD. This has given me more time to consider it.

I think age makes a big difference to the decision one makes. If one of my children was at risk of AML I'd probably be encouraging them to try a transplant if that was an option. I am nearly 4 years along from diagnosis, fit and well 95% of the time, and being monitored with 4-weekly blood tests and 3-monthly haematologist consultations (just extended from 2 monthly). I know a lot more now than I did then, partly from being on this forum and partly from doing other reading. Apart from my sensitivity to strong drugs, I find the fact that chemo can induce MDS to be quite unnerving.

"Cure" statistics are often quoted on this forum without any qualification as to age group, seriousness of the original condition, what the cytogenetics were, whether the person had any other health issues, whether the survivors are battling chronic GVHD, etc. I would be interested in recent valid statistics for people in my age group, 3+ years post-transplant, who have come through and are actually well again.

[Chirley]

You make a good point Cheryl. It's 5 years (in a couple of months time) since my last Vidaza and I can't help but wonder if my current "non response" to the copper treatments really is a non response or whether it's a post Vidaza complication. Either way....if bone marrow failure no longer responds to treatment it really doesn't matter what the cause is. There is a part of me that's just a little curious though. The haematologist said there was no point doing a BMB...the peripheral blood tests are definitive.

Surprisingly the last three units of blood I had a week ago still seem to be holding and I'm feeling better than I have for quite some time.

[bailie]

Data, you asked, "Does that mean you life prior to the SCT was just "acceptable"?

Yes, my life before the SCT was "acceptable" as opposed to not being "acceptable". I have had a very full life and would like to continue it as long as possible. I have zero regrets for having had the SCT. I have not felt any significant pain following the SCT and am golfing weekly. Golfing is my litmus test for how I am feeling. Life with my family and friends has been high quality since the transplant. My life right now is very similar to my life pre-SCT with the hope of continuous improvement.

As I said previously, everyone's situation is different. It is important for each person to understand their particular situation. I would rather be alive than dead. I wouldn't be alive at this time without the SCT. My life since the SCT has been very rewarding in many ways. I never had symptoms of MDS prior to my transplant. I have only had one transfusion and that was a day following transplant when my platelets fell for a day into transfusion territory.

I appreciate your comments. Always worth the discussion.

[Data]

Baille,
I am very happy for you and glad you have been so fortunate!!! Many people have said it but it is worth emphasizing what you said in your last post, "It is important for each person to understand their particular situation". When I was going thru my prostate cancer some folks on the prostate cancer forum would insist the way they chose to have their cancer treated was the best way for everyone. Then and now I have to see what is best in my situation. I haven't ruled anything in or out.

Enjoy discussing it with you and the other folks on the forum.

Cheers

Data

[rar]

Originally Posted by Cheryl C

"Cure" statistics are often quoted on this forum without any qualification as to age group, seriousness of the original condition, what the cytogenetics were, whether the person had any other health issues, whether the survivors are battling chronic GVHD, etc. I would be interested in recent valid statistics for people in my age group, 3+ years post-transplant, who have come through and are actually well again.

I think this is what you are looking for. It was done by Health Resources and Services Administration.

http://bloodcell.transplant.hrsa.gov.../survival.aspx

It does include age, original condition, survival at 100 days 1 year and 3 years. Data is from 2008 to 2012. If you include to many critera the sample size becomes too small to have valid statistics.

Ray

[Data]

Ray,
Excellent web site! Thanks for posting the link.

Data

[bailie]

Ray, that is interesting. The percentages are much higher than I have previously seen.

Thank you.

[Biker2]

Hello everyone. I'm new to this forum, but hoping to obtain a better idea of what is down the road. My spouse was diagnosed, finally, in early 2013 with Raeb1. He was referred for bmt work up about 2 months later. As he would require a non family donor he chose not to move forward with that course. He has under gone vidaza, and cyclosporine treatment with no real change in his counts(all extremely low). He just had his first transfusion of rbc with minimal change. He is now beginning treatment with revlimid following the discovery of an asxl1 mutation. I am a bit concerned, as this treatment appears to reduce counts before improvement. Has anyone experienced treatment with this medications, or know anything about this mutation? From what I have found, it doesn't sound good, and I'm beginning to wonder just what we're up against.
Thanks

[bailie]

Welcome to the forum. Why did he desire " As he would require a non family donor he chose not to move forward with that course." A non-family donor is very common and might be the only option.

[Neil Cuadra]

Biker2,

As you learned, Revlimid, like Vidaza, is likely to reduce counts before they go higher. That's the nature of this treatment, but it's still recommended because of its rate of success, especially if other options have failed or been ruled out. Success isn't guaranteed, but it will help if your spouse is closely monitored and supportive care, such as transfusions, are used as necessary. I'm concerned that a transfusion didn't help; usually they are quick temporary boosts to counts.