MDS in transformation (transplant)

[Chad S]

My wife's initial diagnosis at Baylor in Dallas was that she had AML coming from MDS (she had 20% blasts). However, we got a second opinion at MD Anderson and they said they wanted to treat her for MDS, not the AML.

The key difference here is that Baylor wanted to go straight to the AML chemo protocol. Which is a very heavy dose of chemo (hospital 4 to 6 weeks) which has a good chance of bringing you into remission. Then when in remission you follow up with another round of chemo. If relapse occurs, you go to transplant.

MD Anderson, in my opinion, thought more outside of the box of a protocol and more about long term reality. They told us that yes, the initial heavy chemo would most likely bring about a remission, but due to the underlying MDS she would most likely relapse. Meaning that eventually a transplant was in her future. And if that is the case, the initial blasts of heavy chemo would only weaken her body for the inevitable transplant (and the chemo that comes with that). So they recommended she go straight to a trial chemo followed by transplant asap.

The trial chemo is called SGI 110. It had very low side effects. She did not lose any hair and never threw up and was not hospitalized. Her quality of life was very good during this time, and it worked! She went to below 5% blasts within two months and had her transplant at 3 months. Each round of SGI 110 is a 28 day cycle, so she had three cycles.

The key takeaway here is that she was in excellent health when she began the pre-transplant chemo, which has lots of side effects. It was the same as you hear about all the time with the hair loss, mouth and throat sores, nausea, etc. But it was her body's first big hit, not it's second or third.

If you have a high risk case of MDS, it might be worth asking about the likelihood of a transplant and if it is a very high likelihood ask what treatment you will have prior to finding a match. There are treatments like SGI 110 that are much less abusive to your body and can leave you in better shape for the real battle that lies ahead.

I am not a doctor, so you should find a hematologist that you trust and go with whatever they say. I know just enough about this stuff to be dangerous, so this is just based on our experience.

May God be with you on this journey.
Chad

PS: My wife goes for her 9 month post-transplant follow up at MD Anderson in 2 weeks. She is now completely off of her immunosupresant (tacrolimus) and is doing well.
Chad

[Whizbang]

Chad,

Congrats to you and your wife on 9 months!!!

I can only agree with everything you've said, as I followed a very similar path... 2 rounds of chemo (Dacogen), and straight to transplant (going in strong) 4 months after diagnosis; having high risk MDS, and 3 young daughters, left me only one choice also - Transplant...

I am glad to hear she is doing well, and may she continue on to a healthy future!!!

All the Best, and God Bless...

[bailie]

Chad, congratulations to both of you and especially your wife.

I am expecting an almost identical journey. I have had two cycles of Vidaza. I have a bone marrow biopsy this Friday with the expectations of going to transplant following my third round of Vidaza that starts on Monday. Naturally, the BMB results might influence the schedule. My initial diagnosis was MDS (RAEB-2, possibly AML) with blasts at 19 percent. Second BMB a week later showed 9-11 percent blasts.

I am interested how your wife handled (is handling) the post transplant life. Many "ups or downs"? Any good words of advice for some of us getting ready?

Thank you and continued success !!

[Chad S]

bailie,
That's interesting you say initial biopsy showed 19% blasts and a week later it was 9-11%. My wifes was 20% then a week later was closer to 10%. That's why I list it as RAEB-1 in my signature, but really think it was RAEB-2.

My wife (Danielle) is doing very well. In fact, doing well enough that I don't like saying that because I don't want to jinx it. She had a 10/10 MUD on 5/22/2013. She engrafted on around day 12 and was released from inpatient care after 22 days. During that first 3 weeks she had elevated liver numbers and they never clarified if that was due to the chemo or GVHD, but her numbers are normal now. Twice her oxygen level got low enough that they did chest x-rays but found nothing unusual and she did fine on oxygen (with mask or through nose). She had spots that showed up on her skin and they did a biopsy and were basically inconclusive and those are now gone. She even had an enlarged lymph node in her neck that they tested for Epstein Barr Virus (EBC) and first test came back positive and second came back negative and the swelling went down on its own. I tell you all of this because each time something like this happened I was very worried, but the nurses and doctors did not seem to be worried and each time it turned out to be nothing. I say nothing, it was something but whatever it was they did not know and it was not long term. So the first 30 days post transplant your body will begin adjusting to the new marrow and recovering from the chemo, and all of the things that happen are not necessarily something to worry about.

Currently, Danielle is doing great. She walks the kids to school every day, she does light exercise daily, we've gone to dinner with friends. I have to say, the "new normal" is much better than expected. She did not have acute GVHD and is not showing signs of chronic GVHD although that could still come. As crazy as this sounds, the only thing I worry about is that the lack of any GVHD concerns me about Graph vs. MDS (there are initial for this but I have forgotten them). This is where the new immune system comes in and kills any remaining leukemia cells that could have been left behind after the chemo.

During your stay in the hospital, take your favorite pillow and blanket from home. Find out where the warm blankets are so your care giver can get one for you without requiring a nurse. Buy one of those small DVD players with a screen (they look like a laptop) and lots of DVDs. If you have an iPad, join Netflix and learn how to use it before you get to the hospital. Danielle took books but did not feel like reading, but she did watch shows and movies. Find out where the laundromat is and take several rolls of quarters, detergent and a laundry basket to the hospital. Get the detergent for sensitive skin. We had a bowl of candy for the nurses that I kept full and they all seemed to really appreciate it (I thought it might make them stop by more often!). Walk, walk and then walk some more around the hospital floor. Start your mouthwash before the sores show up and do it several times per day - get ahead of the sores (they suck!). And do the breathing treatments. All of this helps tremendously and it's easier to stay ahead than try and catch up.

After you are out of the hospital you will still go back daily for a while. Your care giver will learn how to clean out your port, and that is really no big deal. Life has been good. There are ups and downs, but I can't complain considering what I was expecting. We even have two dogs and a cat and that hasn't been an issue (she was not around them for the first 100 days).

Tell your care giver to get out each day and do something. We were not in our hometown so I stayed in the hospital with my wife. She slept most of the time so I had to battle some restlessness. I began taking a long walk each morning and that helped a lot.

Not sure why my replies are so long, I guess I have a lot built up in me wanting to come out! I hope this helps! Please don't hesitate to ask any specific questions.

Expect to be OK and you will do great. I wish you the best!
Chad

[bailie]

It is great that Danielle is doing well. Sounds like the whole transplant was handled very well. I definitely get the impression from everyone that the "ups and downs" are normal and to be expected. I will be having the "mini" transplant which will have me out of the transplant center soon after the transplant, but we will be required to stay within 15 minutes for the daily procedures and emergencies.

Like you, we will be living away from home for the "100 days". Your comments are very good. Every tip is helpful and I will add yours to my list. Were there any food issues?

We also have a dog and that will be tough to say goodbye for several months.


Thank you, I appreciate your advice.

[jessinpdx]

Chad S,

I am newly diagnosed with MDS at age 37. I read your thread and your wife's diagnosis and treatment look to mirror mine. Though my blasts aren't as high, I have three chromosome abnormalities that put me in the high risk category. I start Vidaza tomorrow and I have two brothers who are being tested to see if they are a match. I have more complicated background so I suspect finding a match might take a little time.

I'm so glad your wife is doing well and it gives me hope that my journey might be similar. I see that there was a very short turnaround between her diagnosis and the transplant.

Do your doctors know anything about how she came to acquire MDS? Why did she initially go to the doctor? I also wanted to know how you handled things with your kids during the transplant time. Sorry, lots of questions. I am just encouraged to find someone in a similar situation as my own.

All the best to you and your family,
Jess

[Chad S]

jessinpdx,
Our doctors do not know how she acquired MDS, it was discovered during a routine checkup at the doctor when blood results came back and all of her counts were low. Her doctors at MD Anderson said they wanted to do a transplant as soon as they had her blasts below 5%, so the search for a donor was started right away and she had a transplant at 3 months after diagnosis.

We live in Dallas and went to Houston for treatment, so how to handle the kids during that time was a big concern for us. We wanted to disrupt their lives as little as possible, so my mom moved into our house and lived with the kids for the 4 months we were away in Houston. I spent the first 30 days in Houston after the transplant, then would come home every 2 weeks for several days.

It was really difficult for the kids, and I wish I could tell you that we had found a way to make it easy for them. However, our children are now 10 and 8 years old and we are back to a pretty normal and very happy life. My wife is still doing very well and she goes to the kids sports events, walks them to school and we took the kids to 6 Flags this weekend. We definitely feel very blessed.

We are coming up on 1 year post transplant (her 1st birthday!) next month. I hope my wife's story helps comfort you as you begin this journey.

Stay strong,
Chad S

[jessinpdx]

Thank you very much for your reply. That is wonderful that your wife continues to do well and approaches her 1 yr transplant anniversary! Please tell her that in these dark days of uncertainty her story is inspirational.

I started my Vidaza today and will have two cycles before another bmb. In the meantime we wait for a match! Did she ever go on Vidaza?

Blessings to you and your family,
Jess

[Chad S]

jessinpdx,
She did not go on Vidaza. MD Anderson is doing a trial on a drug called SGI-110, and she had 2 cycles (each cycle is 28 days). Her blasts dropped to 5% and a match was found (unrelated donor 10/10 match) so they proceeded with the transplant. SGI-110 is similar to decitabine but has a longer life in the blood stream.

Interestingly, MD Anderson is doing another trial that we elected to participate in where Vidaza is given after the transplant even if transplant shows remission. They are studying to see if Vidaza post transplant decreases relapse rate in high risk MDS cases. Unfortunately, my wife was randomly selected to not receive the Vidaza in the study. So she is included in the comparison group to the people the do receive the Vidaza.

I have heard good results from Vidaza and many people in this forum can share their experience with you.

[bailie]

Jess,

I am in the middle of my 5th cycle of Vidaza. My blood counts bottomed out after the second cycle and have been improving since. Everyone is different and usually they will say that the counts start improving after the 4th cycle. I receive my Vidaza subQ for seven straight days each cycle.