Preparing for transplant admission September 21st

[Debbie W]

We met with the transplant doctor yesterday and she gave us a date of 9/21 for admission, they are in the process of doing the final bloodwork for his sister and his brother so we still do not know who they will pick.

What they are proposing is a T Cell depleted transplant, no radiation. They will use Busulfan, Fludarabine, Melphalan along with ATG treatment, so 7 days of chemo, a day of rest and then the transplant. They also want to do three daily injections of KGF just before admission to try and reduce mucositis, it is an FDA approved drug, but this part would be part of a trial.

[Laura]

Wow! Good luck with everything and as I told Karen, keep us updated/posted on how things are going.

That is an interesting combination of drugs for transplant.

I forget...where is the transplant being done?

Laura

[Debbie W]

It is being done at Sloan ... I hope interesting is good :)

I've been reading about the T cell depleted transplant, they said his immune system would be closely monitored (CD4 cells) and if need be they could add some T cells, guess none of this is an exact science.

I've read your messages and hope that things continue to improve for you, thanks for sharing as we all learn a little bit.

Kind regards,
Debbie

[Laura]

Debbies,

I say interesting because I have not seen that combination of drugs for transplant before...but that is because I don't know much about transplants for MDS. I am used to the conditioning for AA so it was interesting to see the difference.


But I am not trying to scare you or anything....I have heard both good and bad things about T Cell depletion. You need to be very careful not to get sick especially with a virus because your body has zero percent immunity without T cells and you can get sick very fast and things can go bad fast. That is just in my experience and knowledge of T Cell depletion for AA. I personally would not do T Cell depletion based on my knowledge. But I don't know everything so there could be things that I might not know, which is why it would be a good choice for you.

Laura

[Debbie W]

Sincere thanks for your honest reply, this has all moved along so quickly, I wish we felt there was more time to study the options. I've been reading a variety of studies on and off since this morning, but they are not easy to read, let alone fully understand.

:confused:

Thanks again!
Debbie

[tserdogan]

Hi,

i hope everything is going right and no side effects seen.
Debbie,how old is your husband.(sorry may be you wrote before but i don't remember now )

[mausmish]

Debbie,

There are many confusing options, no doubt about that, and the medical articles are difficult to navigate. We find it helpful to ask the doctors to explain why they chose a particular treatment in my specific case. Sometimes they don't think to explain that without being asked but they are good about responding to our questions.

Hope all goes well with Mike as you move forward. i know this is a stressful time for you both.

Karen

[Laura]

Sincere thanks for your honest reply, this has all moved along so quickly, I wish we felt there was more time to study the options. I've been reading a variety of studies on and off since this morning, but they are not easy to read, let alone fully understand.

:confused:

Thanks again!
Debbie


Debbie,
You may want to call your nurse or whoever you are in contact with in the transplant center. Ask them to explain the options to you and the pros and cons. Are they presenting more than one treatment option for you to pick from? Or are they saying this is the only way to go? Just wondering. If they are presenting different ones. Ask them for all the pros and cons in plain English not medical talk. It is all very hard and confusing. I wish I could help you out in some way. Did you just get one opinion on the treatment plan for BMT or multiple?

Laura

[Susan L]

Hi - This has got to be so stressful for you both. Please do what you both feel is right and what you have trust in. You have a tremendous amount of wishes for success and happiness to come your way. I wish I could help you both - Please keep in touch - Susan L.

[Laura]

Hi - This has got to be so stressful for you both. Please do what you both feel is right and what you have trust in. You have a tremendous amount of wishes for success and happiness to come your way. I wish I could help you both - Please keep in touch - Susan L.

I echo this completely.

Yes, that is the most important thing in all of this. As long as you do what you feel is right and what you trust in....then that is the right decision and best decision.

But it is also important to understand what is going to happen. So if you have any questions please have them explain it to you so you can understand more clearly.

Laura

[Debbie W]

My husband is 58 which is why they are not doing the total body irradiation and they also said the chemo drugs will most likely be given at a slightly reduced rate.

Thanks for the kind note and I hope you continue to get stronger each day :)

Debbie

[Debbie W]

We have another visit scheduled for Monday so there will be more questions. She did explain why, but I guess we need to go over that again :confused:

I did speak with a doctor today at Fred Hutchinson, she said that all centers have certain areas that they are exploring. Initially when you just see the blasts increasing you want to try something and that cuts down on looking at other options.

Thanks for the wishes and I hope that you do well on this road as well.

Debbie

[Debbie W]

Thanks, we'll get through this, so many others have gone through similar experiences and at least we are able to share our thoughts and concerns with people who understand. Please know that your support is helpful and I will keep in touch.

Enjoy the weekend,
Debbie

[Debbie W]

I'll get there, my nature is to question, which can sometimes be a negative and things moved faster than we first thought. Having the first meeting less than two weeks before admission did not help, but it is what it is. Plus I think there is naturally some apprehension when the time gets close.

There is another appointment scheduled for Monday so I'll have a list of questions ready. You are so right when you say you need to understand what will happen. We still do not know which sibling they will pick, his brother comes down on Monday for all his final bloodwork.

Thanks :)
Debbie

[Debbie W]

Forgot to answer this question, they only presented one option and we have not had a consultation with another center. I did speak with a doctor this afternoon at Fred Hutchinson, they do not do the T cell transplants as they focus on a different area of targeted radiation. But she did say that from the facts I gave her that the timing was also crucial and this just might be the time, also said that Sloan was not chopped liver :)

[m mindas]

Hi Debbie-
I am going to Sloan for a SCT also. I am to be admitted 9/19. However, I will be getting radiation and chemo. Lucky, huh? The doc (Dr. Castro) feels that given my prior failed tx with ATG, I need both to kill off an overactive immune system?
I was told that a t-cell depleted sct was my best option also. I am currently looking for answers about a t-cell depletion sct. I spoke with a former Sloan patient who felt the t-cell depletion was why she doesn't need to take meds now. That was in 2003. I guess they have been doing them for a while The t-cell depletion is also a part of their clinical trial that they are doing at Sloan.
Definately a lot to digest.
I am also going in on Monday.--I have blonde hair (for now) and will be on a few floors for pre-admit tests. Maybe I will see u and Mike.
Good Luck!
Marian

[Lisa Z]

Debbie, and Mike and Marion-

I wish the best to you for your upcoming SCT. I have MDS and did the Campath trial at NIH in March. 2009. I know at that time, they were doing T cell depletion trials. We had talked about it because initially they thought I was a transplant option, but then things changed and it was not on the list of options based on risk vs. benefit, (for me). For over a year now, I have been free of all treatments and am holding my own, thanks to the Campath.

Anyway, just wanted to say that there are SO many trials out there and many treatments locations. The best we can all do is research facility/doctor options, research SCT options, and go with your gut. What is best for one person may be different from what is best for another. Location, support system, etc., etc., is emotionally draining in making the decision. I went through that when deciding between ATG/Cyclosporine or the Campath. I had an emotional breakdown right before the trail. I was a mess. But in the end, I had made the right decision for me. So, stick with your decisions and think positive.

I wish the best of outcomes for each of you. Keep us posted, please!

Lisa, in Philadelphia

[Laura]

Forgot to answer this question, they only presented one option and we have not had a consultation with another center. I did speak with a doctor this afternoon at Fred Hutchinson, they do not do the T cell transplants as they focus on a different area of targeted radiation. But she did say that from the facts I gave her that the timing was also crucial and this just might be the time, also said that Sloan was not chopped liver :)


Yes, Sloan is a very good place to have a transplant. I am glad you are going to get your questions answered.

Like I had said, I don't know everything or hardly anything about his case so T Cell depletion might be the absolute best for him at this time. Only you and his doctors know what is best. And what you decide will be the best :)

Laura

[Debbie W]

Thanks Lisa, I know they have been doing them for at least 20 years, but I do appreciate the fact that the NIH mentioned it as an option for you at one time. Sloan did a recent trial that ended in 2009, results have not been published yet. I'm not alone in thanking all the people who have gone before us.

http://www.clinicaltrials.gov/ct2/show/NCT00582933?term=T+Cell+depleted+transplant&rank=2

I'm so happy to hear that things are going well for you and that it was the correct decision at the time, sometimes that is all we can do. A little research and a little faith and then some positive thinking.

Kind regards,
Debbie

[Debbie W]

We are so fortunate to have insurance that allows us to go to a major cancer and also to have two siblings who are matched donors. Many people do not have that available to them. Hopefully I'll feel a bit more comfortable after the next appointment on Monday and will focus more on the next phase.

Hope you are feeling better and that things continue to improve for you :)

Thanks,
Debbie

[Laura]

Debbie,

Yes, that is amazing that both his siblings matched!!

I am feeling better thanks to a cocktail of drugs...but I dream of the day I take hardly to no drugs at all!!

Keep us updated and I am sure you will feel better after your next apt. This can be overwhelming at times. But know we are all here for you to try and answer any questions you may have or just for support!

Laura

[Debbie W]

Best of luck to you! Not sure how the 8th floor operates and how much freedom is allowed for patients, but I'll inquire about you when we are there.

Monday schedule starts at 11:00 with the dentist, EKG, chest x-ray, then a 2:00 appointment with the transplant doctor at Suite 4 on the 4th floor. My husband's brother is also coming down that day for his final bloodwork, we still do not know who the donor will be. So we're trying to get together with him before he heads back north that afternoon. I have brown hair and my husband is currently without hair from induction therapy, but if we do not connect this Monday then we can connect the following week. I'll send you a PM with my contact info.

The lack of follow up meds is something they mentioned, the trade off is a longer time for the immune system to recover. We'll just do the best we can, unfortunately there are no easy answers with these diseases.

Hopefully everything will go well for you and my husband and I'm looking forward to meeting you.

Best wishes,
Debbie

[m mindas]

Debbie-

We will be zigging and zagging tomorrow-I have a Dental appt. @ 10:00 and EKG at 1:00. I'm sure we will meet up. I will be looking for you and ur husband!
Small world, huh?

[Debbie W]

I'll say hi to every woman who has blond hair and ask what her name is :D

Dental 11, EKG 12, chest x-ray 1, transplant doc at 2.

If not tomorrow then next week, hope all goes well!
Debbie

[squirrellypoo]

Wait, is Campath the same thing as T-cell depletion? If so, then I had a very similar conditioning regime - I had fludarabine, busulfan, and campath. And the latter was the only one I even felt (the first two might as well have been saline drips for all I could tell!), and even that wasn't bad at all.

[m mindas]

No, T-cell depletion is the type of transplant that they do. They remove the donor's t-cells so they don't attack you in some way. However, they can add them in and sometimes do if you need them. The transplant is more of a syringe-instead of a bag of blood. Even more anti-climatic.
Campath is the trial drug of NIH that is in comparison to ATG.
Are you sure it wasn't Cyclophosphamide instead of Campath? They all have different preparatory regimens...

[squirrellypoo]

Are you sure it wasn't Cyclophosphamide instead of Campath? They all have different preparatory regimens...Nope, I'm 100% certain it was Campath. It only came out of trial at King's for transplants a few weeks before I had it last summer, but it was already so popular that the nurses said most of the patients on the transplant ward were having it in their conditioning.

[Laura]

I had Campath for my conditioning too as part of a trial. In addition to the Campath I received high dose Cytoxan and radiation.

I loved getting the Campath instead of the ATG which is usually standard.

Melissa, I guess I had forgotten the different drugs you received.

Laura

[Laura]

Debbie and Marian,

Hope the apts went well today.

Laura

[starz]

Nick had Campath as part of his regime in July, and also I think he had Tcell depleted donor cells.
In the literature we were given it said the Campath (Alemtuzumab) attaches itself onto a protein (CD52) on lymphocytes. This triggers the immune system to attack them.
It was given daily on days -8 til-4.

[Debbie W]

Thanks for the wishes, all went well and Marian and I did get a chance to meet and speak briefly before other appointments. Guess it is all a balancing act with trying to reduce infections while maintaining the benefits of a new immune system.

Long day yesterday, we left our house around 8:30 a.m. and finally got home for the night at 1:00 a.m. after stopping at the local ER to retest Mike's potassium level, same thing happened two weeks ago. Again came back in the normal range at the local ER so ???

We'll find out the blast count tomorrow from Monday's BMB as that is the only potential obstacle to an admission on Tuesday.

Hope all is well with you!
Debbie

[Debbie W]

T cell depleted and Campath are different, but I'll tell my husband that the fludarabine and busulfan are just like saline drips.

The power of positive thinking :D

Just three more days - all the best to you and your husband to be.

Since you are going to NYC, you can always visit two marrowforums members at Sloan :rolleyes:

Enjoy!

[Laura]

Debbie,

So with the Potassium level? I am confused...did you get it tested in the morning and it was off so you had to go to the ER to retest it to make sure it was okay? Sorry I didn't quite get that part of the story.

Anyhow, sorry for the long day. Hopefully you two can get enough rest and relaxation time.

Sending good thoughts your way for the BM results.

Laura

[Debbie W]

Yes, the blood sample at Sloan in the middle of the day showed a higher level of Potassium, but they did not have the results until we had already left. They called when we were on the way home as they wanted it checked again so we went to the local ER that night instead of going back to the city. Same thing happened two weeks ago. I shortened the story, but obviously it did not help. :)

Thanks, the blasts had a slight reduction, currently 2%, they counted 4% two weeks ago, so still on schedule for 9/21.

WBC in the high 6's or low 7's, platelets in the mid 300's, hemoglobin in the 11's or 12's ... all depending on the lab, same day about 9 hours apart.

Be well,
Debbie

[Laura]

Oh okay, thanks for the clarification. That is a bummer.

I always thought it was interesting that you could have your labs draw so close apart but they could be so different!

Laura

[Debbie W]

Well that was fast! It only took about 15 minutes to inject the cells, the preparations took a lot longer. Except for about 4 days of not eating, things have gone relatively well. Counts have just dropped to near zero, so we'll see what the next week brings.

[mausmish]

Debbie, You and Mike have been on my mind a lot. Thanks for the update. It's good hearing from you that everything is going fairly well so far. Why no eating? Was it the conditioning chemo? Sending lots of positive thoughts your way. Karen

[Susan L]

So nice to hear everything is on spot so far. Did Mike get to drink ensure or some suppplement for nourishment. I did not realize it was so fast. Sending prayers your way. Keep in touch.

[forevr30]

Hi Everyone! I have just been reading all the threads on the post. My husband was diagnosed with RAEB-2 in July. His blasts are at 17%, and he is scheduled for a SCT. He gets admitted on 10/14 at Karmanos Cancer Center in Michigan. He has a brother that is a match for him and is willing to donate. His doctor has said that without the SCT he would die within a year, but it's so crazy because he has never really been sick with this. We have moved along on this journey very quickly and it is so scary! I wish the best for all of you and your famililes! I guess all the posts on this thread just made me feel that all of you know exactly what we are going through.

[Neil Cuadra]

Lee Ann,

Many patients and spouses here know exactly how dizzying it can be to go from feeling basically fine to diagnosis to transplant within a matter of months. How fortunate that Dan's brother is a match! With the transplant coming up so soon, I suggest that you concentrate on keeping Dan's strength up and reading to get a realistic picture of the transplant and recovery process. Don't forget to take care of yourself too. We're rooting for you both.

You might want to ask the doctors (soon) whether either Dan and his brother should get a flu shot. I don't know what the considerations are or what the doctors will say about it, but you don't want there to be any chance that the flu will get either of them.

[Debbie W]

Yes it was the conditioning chemo that made him nauseous, once most of the chemo was finished and he went to a regular schedule of Ativan he slowly began eating again. He is back to just having the Ativan at night to help him sleep. Foods still do not taste very good, but at least he is eating small amounts and doing his exercises. Thanks for the positive thoughts :)

I read your thread about making a choice on a transplant center, what relief that must be! Now I'm sending you positive thoughts on finding a donor.

[Debbie W]

He was getting sick without eating or drinking anything so no supplements, fortunately it did not last too long and hopefully the next week will not present any significant challenges. His weight is relatively unchanged and he is back to eating small amounts. The transplant was probably faster because of the type of transplant, T cell depleted, it was just a large syringe.

[Debbie W]

Great that he has a brother who is a match and willing to donate! Are they going to do the transplant with 17% blasts or is this admission for chemo to reduce the blasts?

Best of luck,
Debbie

[forevr30]

Apparently, they are going to do the transplant with the 17% blasts. He is scheduled for 6 days of chemo, a day of rest, and the next day is the transplant. After reading about this, it seems this is unusual? Most of what I am reading suggests they do NOT do a transplant with blasts so high. I'm confused.

[mausmish]

Yes, we definitely can identify with what you and your husband are going through. On the other hand, one thing we've learned is how individual this disease can be from person to person in some ways. Plus each patient, doctor, and facility will be different. It's great that Dan has a matched sibling donor. I thought it is common to do some sort of consolidation therapy to reduce the blasts before moving to the pre-transplant conditioning chemo but I am not a medical professional. Do you have a good rapport with your doctor? It wouldn't hurt to ask why they decided to move forward without trying to reduce the blasts first. Perhaps there are good reasons specific to your husband's case. Or you could try to get a second opinion.

[Debbie W]

I can only speak of my husband's treatment at Sloan, they wanted blasts under 5% before transplant. Each case and each center is different in their approach. If you are reading some conflicting information, then a few questions are not out of line.

It is a very confusing time and maybe some additional information will help to understand the process. You can also contact another center to get their answer and standard treatment given your husband's general condition.

Let us know how things progress,
Debbie

[mausmish]

You and Mike continue to be on my mind a lot today. Glad to hear he's doing well so far and getting his appetite back. Sending lots of positive, healing thoughts your way. I hope you're taking care of youself, too, getting enough rest.

[Debbie W]

All is going rather well and my sister from the UK came by to give support to both Mike and myself. Appetite is OK, as long as he is eating something they are happy. Friday he starts the Neupogen shots, just need to make it through the weekend. Check your private messages.

Warm regards,
Debbie

[starz]

Hi Debbie,
Sounds like everything is going well for Mike. Nick couldnt face food much, and was very specific about what he would eat. When he got out we realised his taste had changed and he seemed to taste the bitter element of foods, even chocolate was bitter. That didnt last too long, and he found tomato ketchup or brown sauce helped at mealtimes. All is back to normal now, and has been for a while.

[Debbie W]

Mike had a few days where he did not eat, first during some of the chemo and then after transplant when he had some mouth sores. The other days he tried to eat something, even though it took awhile to eat a cup of yogurt. He did say bland items were more tolerable and nothing really tasted good. His counts have begun to come up and they are talking about a possible discharge the end of this week.

I'm so happy to hear things are back to normal for your husband.

Kind regards,
Debbie

[Debbie W]

Thanks, the positive thoughts have certainly helped. We'll see what the next few days bring, Mike is looking forward to leaving his room.

I'll be watching your space to see how things progress for you.

Best regards,
Debbie

[Debbie W]

Now time for some healing, of course there is a follow up visit on Monday and then the 1 month BMB, but so far all is well.

[mausmish]

That's great news, Debbie! Thanks for your insights and updates. May Mike's healing continue at a fantastic pace.

[Mary4Mike]

Debbie,

I have been following your posts about your husband's journey. It has and will be interesting to continue watching his progress as my husband's transplant Day 1 was October 1, 2009. He had his 1 year biopsy last week and learned that he still has no disease and 100% donor cells. I pray that things go as smoothly for your Mike as it has for mine. I realize that all transplants run on their own timetable of recovery and that your husband went through the real whammy of prechemo preparation.

It will be good for both of you to be able to leave the hospital and get on with the recuperation portion of this journey. Stay strong!

Mary

[Susan L]

Hi- I am amazed at how fast everything has gone for Mike. It is really great how he is doing and I bet you all are so happy leaving the hospital. Enjoy your time and rest now - when all is completely well I am sure you both will be going full speed ahead. Bless you both.

[Debbie W]

The biggest challenge now is eating, so he is still sticking with what works, a limited variety of foods. We might venture out for a walk on this gorgeous day :)

[Debbie W]

That is wonderful news about his one year biopsy and happy that things have gone smoothly for your Mike! Thanks for the warm wishes and words of encouragement, we are enjoying the new normal for now :D

[Debbie W]

He is very happy to move around. Yesterday we found the gym in this building and Mike did a mile on the bike and a small amount of rotations on a couple other machines, just starting very slow for now.
Hoping you are feeling OK and that the Vidaza is working!!!

[Susan L]

He is very happy to move around. Yesterday we found the gym in this building and Mike did a mile on the bike and a small amount of rotations on a couple other machines, just starting very slow for now.
Hoping you are feeling OK and that the Vidaza is working!!!

Hi - I am doing ok - alittle short of breath going on again, and the tiredness. Biggest problem is the mouth sores. I'm sure they will go away again. It really is encouraging to hear about Mike's progress. To be rid of this disease will be a miracle. Best wishes coming your way.

[Debbie W]

Wish all these problems would just disappear for you, but hopefully it will be worth it in the long run.

We are encouraged, but will also remain vigilent about following their rules for the next several months.

Thanks for all the encouraging words, sending you positive thoughts each day :)

[Susan L]

Wish all these problems would just disappear for you, but hopefully it will be worth it in the long run.

We are encouraged, but will also remain vigilent about following their rules for the next several months.

Thanks for all the encouraging words, sending you positive thoughts each day :)

Thank you for always being uplifting. Sometimes we all need it. I got some Magic Mouthwash - but boy oh boy - these sores are bad this time. From the tip of the tongue to the back of the throat. I hope its just running a short time frame. Hope you guys can hold off moving from there till Friday and go to the Hope Lodge. (due to the spraying) Take care

[Debbie W]

In addition to the magic mouthwash and bicarb solution, they also used Gelclair three times a day in the hospital. One nurse told us that the magic mouthwash reduces the pain, but that the Gelclair also helps to heal the sores???

http://en.wikipedia.org/wiki/Gelclair

It was one of the times Mike did not really eat or even drink that much - just ice chips for a day or two, hope they go away soon! We're staying at the condo until we move to Hope Lodge on Friday, we'll miss the two rooms, the location and the gym that Mike has been using.

Be well :)
Debbie

[Susan L]

In addition to the magic mouthwash and bicarb solution, they also used Gelclair three times a day in the hospital. One nurse told us that the magic mouthwash reduces the pain, but that the Gelclair also helps to heal the sores???

Thank you for the info - it is getting abit intolerable now - atleast I am being quiet at work (hurts to talk) I will call and ask for the Gelclair - Take care.

[squirrellypoo]

Any updates, Debbie?

[Debbie W]

Any updates, Debbie?

It only takes me 2+ months to get around to an update :eek:

We've been home for about 24 hours from our stay at Hope Lodge in NYC, of course they do not have internet access in the Big Apple :D

Seriously, sorry for being absent, but the days just seemed to pass by so quickly. Hopefully things will return to a new normal soon.

Mike is doing well, day +102, and the doc moved him to every other other week appointments.

Best to all!

[Debbie W]

Hi Bailie, decided to post my reply on this old thread so as not to distract.

No mutations showed leading up to first transplant, blasts had reached the margin of 20%, difference between MDS and AML in 2010. I believe his original blasts were in the 10%, after several Dacogen treatments his blasts increased to 20%.

In 2010 they did a T-cell depleted transplant to avoid GVHD, but the EB virus manifested itself about three and a half months after transplant and he underwent several treatments of Rituximab. After that his IGG levels never really climbed on their own and he needed to be supported by IVIG treatments every few months. A little over three years later his WBC dropped about 3 points (8's to 5's) then another long overdue blood test revealed a WBC in the 2's and peripheral blasts just under 10, they called us back as we were just leaving the hospital to give us the news and did a BMB that day. Results around 30% blasts in the marrow and donor status had changed significantly. Before his second transplant they detected the FLT3 mutation, although he achieved remission again with the 7+3 induction.

When I asked if this mutation was detected the first time they said no, I also asked if there were different "levels" of the mutation and I came away thinking it was a lower level and that tests have become more exact. I did not press the question any further, first I figured that I would not understand the science and second because as caregiver I did not want to add to the stress of my patient :)

I do feel that if this relapse had been caught earlier they might have been able to a DLI, or maybe not?, but I do believe we need to be our own advocates or advocate for a loved one.

Sorry for the late reply and hope you are doing well! This is a challenging disease, hopefully they will continue to make significant strides in the not too distant future.

[bailie]

Thank you Debbie. This topic has particular interest for me. I believe that I developed "donor cell leukemia" (DCL) when I relapsed at about Day+210. A primary characteristic of DCL is relapsing with completely different mutations etc. than prior to SCT. My relapse (30 percent blasts and Philadelphia chromosome) was short lived. I started immediately with Vidaza and dasatinib and quickly went back in remission. DCL is felt to be grossly under-reported in the literature but now receiving considerably more attention. Many researchers now feel that donors can be carriers or have a genetic disposition of leukemia but not exhibit the disease. It is a hypothesis that it could be the reason why some people unexplainably relapse and others relapse who might seemingly appear more healthy.

You also helped answer one of my questions that I have wondered. That question was/is, "can a person have MDS/AML without having genetic mutations?" Apparently that is possible. Then I have wondered what specifically causes the higher blast count if not for the mutations? All very interesting.

[Debbie W]

although I can see the possibility and just a quick search is that it most likely under diagnosed.

We went to a seminar a couple of weeks by a local cancer institute, one thing they mentioned is that some, possibly many, of us will die with one or more forms of cancer inside us, but our 'incredible immune' system normally keeps things in check and we die of another disease. Going with the DCL that you mentioned, what happens when someone receives a new immune system from someone who has a mutation that the recipient did not have originally and can they fight it off? It is all very interesting, but we certainly wish we not even thinking of these questions! I might try and probe this idea further at our next appointment, but that is not until mid-December and it is a day filled with 6 appointments.

Wonderful that Vidaza worked with 30% blasts, my husband had first tried Dacogen which they said was similar to Vidaza before MDS transformed to AML, so they did not think that was an option.

[DanL]

Bailie,

Great question about having increased blasts without genetic mutations. If I recall correctly, roughly 1/2 of newly diagnosed, non-therapy related MDS patients do not present with chromosome damage. In the past few years, researches have found other genetic mutations or damage that may be the root cause of the evolution from normal to MDS. They call these driver genes, here is a quick passage that lists them:

Driver mutant genes include those of RNA splicing (SF3B1, SRSF2, U2AF1, and ZRSR2), DNA methylation (TET2, DNMT3A, and IDH1/2), chromatin modification (ASXL1 and EZH2), transcription regulation (RUNX1), DNA repair (TP53), signal transduction (CBL, NRAS, and KRAS), and cohesin complex (STAG2).

Most testing for MDS patients doesn't really go this far in diagnosis - it is more of a research nice to know line item, as treatments aren't currently tailored to fixing these mutations yet.

The appearance of blasts and other immature granulocytes in the marrow and blood is frequently an indication of marrow stress - basically think of the factory analogy that GregH was so adept at explaining - if you were to take the factory (your marrow) and force out more production than it was capable of producing reliably, bad product would make its way to the showroom floor (your blood). This is what blasts represent - bad product that is replacing the good product in your marrow and blood. Over time, these bad cells crowd out the good ones, resulting in deteriorated health.

[bailie]

Thank you Dan. I had two of the mutations (KRAS and SF3B1) from your list and had them (along with IKZF1) until transplant. Never saw them again after transplant except for a trace of SF3B1 which was temporary. My doctors were quite concerned about these mutations as well as the blasts.

The "marrow stress" you refer is also of interest for me. What causes "marrow stress"? Does it develop from short telomeres (I think so) during what I term as a "susceptibility crisis". My susceptibility crisis occurred during a lung fungal infection, very high levels of prednisone and diabetes II and was when I relapsed. Vidaza quickly remedied the situation it seems.

I hope you are continuing to do well. Nice to see your comments.