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.



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]

Originally Posted by 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.



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]

Originally Posted by 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.

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

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]

Originally Posted by 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

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/sh...nsplant&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

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.