Have to have the BM transplant, what should I expect?
 

Hi all,

I just found out a few weeks ago that the Revlimid has stopped working and My cells are dysplastic again. I am going to have the transplant in the next few months and to tell you the truth I am scared beyond anything I have experienced in my life so far!

Any insight on what I have to look forward to?

I had a Bone Marrow Transplant prior to Christmas. I will tell you it was not easy and there are still some rough days.. But it is doable. I looked at it as what choice did I have. It was a chance for me to see my two kids grow up so I did it. I had a list of things that I wrote in my room to stay positive and also a list of things I had to and could do to get out of the hospital... If you want to email me anything you can message me... You can do it...

Hi Cam,
Thank you for responding. I have know in my gut for a long time that this was going to happen. I just want to get it started, but I have a slight dilemma. My mom has terminal cancer right now and I am so scared to start the process and be in the hospital if something happens. I can't imagine not being there for her. How long were you in the hospital post transplant? Did you have BMT or stem cells? I see my Dr again on the 20th and I guess I need to figure this out before then. I have so many questions! I'm sorry I am rambling a bit, but I have not talked to anyone who has been through this yet.

Tammy,
I had a stem cell transplant. Are you looking at using your own cells or someone elses? I was out of the hospital after 23 days post transplant but that was a record for the Mayo for a Alo transplant... They told me that I would not be out for another week at the earliest.. It all depends on how your body repsonds.. But they have called me the enigma from the start. But if you do it I think it really helps to go in with a plan and stick it out. Eat your calories no matter how sick you are, get out of bed everyday (no matter how bad you feel), take lots of positive things to the hospital, have lots of positive people come help keep your spirits up... I ate Ben and Jerrys Ice cream for a week straight. I had mouth and throat sores and it was cold, and each pint was 1600 calories. Do whatever you can to stay off the nutrient IV, they told me that would make me stay longer... Just some ideas that helped me along. I am 64 days post transplant now, I still have my ups and down but I am ok. I walk/jog 3.5 miles a day and most days are good... Another question to ask your doctor is how will postponing it affect you. You need to be as healthy as possible when you start this fight, and it is a fight you can and will win. I was still walking/jogging 3 miles a day the day before I went in for my BMT. So keep that in mind too.

Tammy,

There's nothing slight about your dilemma. It's a very unfortunate situation and I'm sorry you are in this position. A transplant will require some time in the hospital and even afterwards you might not be up to visiting your mom, much less helping care for her, at first.

However, I'll give you my opinion, for what it's worth: I think you should proceed with your plans. I say that for two reasons: First, unless your mom is in the very end stages of life it's unlikely that the doctors can tell you what's going to happen to her on what schedule. Second, if your mom is like most moms I know she'd want you to take care of yourself first and not put your health at risk on her behalf.

Admittedly, I don't know more about your circumstances, but I'll make a suggestion for something practical you can do: plan ahead by deciding who would help your mother if you couldn't: siblings, spouses, other family members, or even hired help. Even though you'll want to be available to your mom, physically and emotionally, whenever she needs you, talking to everyone now could give you more peace of mind about what you need to do for yourself.

Thank you for your replies Cam and Neil. It is a very difficult situation with my mom, but I had a very serious heart to heart with her Friday and have made my decision to go ahead as soon as possible. The timing worked out because I happen to see my Doctor yesterday at the very first MDS patient and family information and support session. We had Dr Lewis R Silverman from Mount Sinai Hospital in NY speaking as well as My Doctor Rajat Kumar and many others. Unfortunately they did not cover transplant in this session because I am the only MDS patient in Manitoba that is eligible currently. I am the youngest patient in Manitoba. To complicate matters a bit further, I also have Myeloproliferative disease with a positive JAK2 mutation, so I cannot have stem cell. Thank god I have a sister who is my match I think 8 or 9 out of 10 and she is ready to go at any time. My next Dr's appt is on the 20th so I will know more.

I saw my doctor yesterday and we have decided on May for the BMT. Any words of advice from any other transplant patients to prepare for this battle? Any tips would be greatly appreciated.

Tammy,

I suggest that you contact the transplant coordinator at the hospital where you'll have the transplant. Ask if they can give you a tour of the transplant facilities and/or give you written information about the transplant process. My wife and I got both of these before her transplant. The tour took some of the mystery out of what we were facing. The notebook they gave us was full of information about what to expect and what to do before, during, and after the transplant.

Good morning, I spoke with her and have all that in the process. We are looking at May for the transplant. I am watching and waiting because my mom is so sick.

Tammy,

I would say to if you are able to get in the best shape you can. I was still exercising up until the day I went in for my transplant and think that helped me a lot. I would also start getting some positive messages to hang in your room and maybe some funny movies. Ask the hospital if you can bring a DVD player and hook to their tv. You will be there a while... Message me if you want I am willing to share more if you want. Also if you have facebook, look for Hunkering Down to Beat MDS that is my journey through this... Goodluck..

Cam

Hi Cam, very impressive that you're able to walk/jog 3.5 miles most days. I had my SCT end January for SAA. Like you still ups and downs but so far my counts look great. With the MDS I'm curious what immune suppressants you're on post transplant. I'm in Cyclosporine and MMF for immune suppression and just like when I was in the Cyclosporine after Horse ATG last March, my calf muscles really suffer while on this medication, even with magnesium supplements. This is mostly an issue at night while trying to sleep, either twitching or full blown very painful spasms, especially if I've exercised the calf muscles that day or in some cases several days prior. I stretch once warmed up & after and again before bed but it doesn't seem to help.

Have you experienced anything like this? & if yes do you have any tips?

Thank you,

Tammy, I wish you the best of luck with your transplant. It is scary to think about, tho medically they have come so far and its pretty amazing how much is known by the transplant teams who do these & what they can do now to help the patients manage these better.

As Cam suggested, try to be in the best shape you can prior to transplant and then walk , ride a stationary bike ... while in the hospital, if available, as soon as you can. Even if you can only start off doing it a few minutes a day at first.

I had an unrelated donor SCT end January for SAA. Like Cam I still have ups and downs, but mostly its gone pretty smoothly, so far.

I'm 53, almost 54, so just a few years older than you. If your hospital allows, I suggest you bring in some easy to digest snacks with you. For home, I pre made and froze a number if simple and relatively bland easy to digest meals in single servings before my transplant, such as chicken soup and sweet potato and coconut soup. I still can't seem to eat much in the way of vegetables other than carrots or spinach, sweet potatoes, potatoes. Still steering clear of onions, peppers, broccoli... If you choose to make food in advance, I strongly encourage you to ask your clinic for cooking, chilling, freezing and reheating rules to keep the food safe for you.