I just had a bone marrow transplant!

[yellowstar007]

I am having a hard time figuring out how the bone marrow I received is engrafting. No matter how many questions I ask my doctor I am still confused. I figured I could try talking to someone, anyone about Bone marrow tranplants. Like what you do all day, the foods you eat. I just feel so lost. Help me out. Send me your stories about your GVHD problems and how you over came them. How you new you had GVHD. Just INFO PLEASE!!!

[yellowstar007]

Originally Posted by yellowstar007

I am having a hard time figuring out how the bone marrow I received is engrafting. No matter how many questions I ask my doctor I am still confused. I figured I could try talking to someone, anyone about Bone marrow tranplants. Like what you do all day, the foods you eat. I just feel so lost. Help me out. Send me your stories about your GVHD problems and how you over came them. How you new you had GVHD. Just INFO PLEASE!!!

Do you know anything about G-CSF. That stuff is so confusing. How does it work so quickly and how long does it last.

[Ruth Cuadra]

Hi, Stacey.

Welcome to Marrowforums. I had a bone marrow transplant for MDS in 1998 and can tell you that the surest signs of engraftment is the appearance of white cells and a slow but steady rise in your white cell count. My white cells first started to appear on Day +17, which was a few days ahead of the 21 days that were typical at that time. Now I think the average time to engraftment has probably dropped down to 12-14 days. This is partly due to the fact that pre-transplant treatments are less harsh that they used to be.

In the hospital, I couldn't concentrate on anything other than TV. I couldn't read and preferred it as quiet as possible. Light hurt my eyes so I had to keep the room dim and the blinds drawn. During the first couple of months at home, I had only enough energy for the basics like showering, dressing, some minor cooking, and lots of napping. I felt weak and tired but not really sick. Gradually, my energy came back as my blood counts went up and my drug dosages went down.

For 100 days, I had to follow a low bacteria diet that allowed only cooked foods, no fresh fruits or vegetables (except those that could be peeled), and no leftovers or eating out. I think there are many transplant centers now that have relaxed those rules so you should ask for their recommendations about food and diet.

I was lucky that I didn't have any gvh for about 6 months. It showed up gradually in the form of elevated liver counts and digestive problems. It took some changes in medication and a lot of patience to get over the worst of it--about a year altogether--but I continued to regain my strength and stamina during that period.

You can read more about the details of my experience in my Personal Profile.

There are lots of knowledgeable members here who can help, so feel free to post your questions. When you do, tell us what your original diagnosis was. Did you have a matched donor? How long has it been since your transplant?

Regards,
Ruth Cuadra

[yellowstar007]

I was diagnosed with ALL in September 2001, I was put in remission about two years after starting chemotherapy. Then, three years later it came back.(May 2007). I had an Allogenic Bone Marrow Transplant August 14th. I am on day 50. I am so scared about the next few months because I had GVHD in the hospital and I am afraid it is going to come back. It was the scariest thing I have every gone through. If there is anyone out there that has some stories about their GVHD problems I would like to read them to see what to watch for. I know the basic symptoms, but stories help me to better figure the signs out.

[Ruth Cuadra]

Stacey,

You might be interested in joining the GVHD listserv. The people on that list have experience in dealing with every imaginable sign of and treatment for GVHD. As with our forum members, they are all more than willing to tell you their stories.

Regards,
Ruth

[yellowstar007]

Thank you for all your help. Your story was very helpful to me. I can't figure out how to get into the mailing list. Is it like email or is it like these forums?

[Ruth Cuadra]

The GVHD listserv is an email list. If you click on the link in my last post, all you have to do is enter your email address and your name and then click "Join the list". If you have a spam filter, be sure that you have set it to accept email from GVHD@LISTSERV.ACOR.ORG.

Hope this helps.
Ruth

[Martha M]

A BMT has been recommended by a specialist at the Dana Farber in Boston (an MDS center of excellence) for my brother, Karl. His RARS became RAEB II in Sept. He was started on Dacogen and had one cycle but they felt he should have a BMT before his RAEB became AML (for reasons that are unclear). My sister was a full match, raising all of our hopes, but then was told she couldn't donate because of the meds she has been on for her rheumatoid arthritis. So they are now searching for either a cord blood match or bone marrow from an unrelated donor. I was not there when this was explained but I assume that cord blood would be a PBSCT rather than a MUD BMT. Does anyone know what the difference in success rates are for this?
Also they have 2 cats, 2 dogs and a 2 year old grandchild that spends a lot of time with them. Will they have to be away from the home after my brother comes home and for how long?
I know these are all questions for his case manager and doctor but they are hard to contact and I don't want to play phone tag.
I would appreciate any feedback/info.

Martha
sister to Karl, age 49, dx w/RARS June 2005, stable on wkly Procrit until Sept. '07 when progressed to RAEBII. No symptoms other than fatigue.

[Ruth Cuadra]

Hi, Martha.

Here's some information about some of the questions you've asked.

...they felt he should have a BMT before his RAEB became AML (for reasons that are unclear).

It seems to be harder to treat AML that arises from MDS (called secondary AML or sAML) than it is to treat AML when it is the original or first disease (called de novo AML). The reasons for this difference are not clear, but doctors will usually push to get a patient to transplant before the conversion to AML if it looks like that is how the person's disease is progressing.

So they are now searching for either a cord blood match or bone marrow from an unrelated donor. I was not there when this was explained but I assume that cord blood would be a PBSCT rather than a MUD BMT.

You're right that a cord blood match would mean a stem cell transplant (PBSCT) but a matched unrelated donor might give either stem cells or bone marrow. The choice can depend on the donor's availability, the specifics of the treatment protocol, the patient's condition, and other factors. The jury is still out on which is better, but studies seem to indicate that stem cell transplants provide quicker recovery for the patient with fewer side effects but have a slightly higher risk of relapse. Bone marrow transplants have more treatment-related risks but are better able to eradicate disease.

Also they have 2 cats, 2 dogs and a 2 year old grandchild that spends a lot of time with them. Will they have to be away from the home after my brother comes home and for how long?

When I had my transplant in 1998, I was told that my dog couldn't be in my house for 100 days and that I should avoid contact with small children at all costs. I think these rules have been relaxed since then so that people who have had pets for a while do not have to be separated from them. But I think patients are advised not to bring new animals into the home because of the risk of introducing new challenges to a weakened immune system. Young children are breeding grounds for germs so common sense would say to limit contact with them during the initial recovery period, but it's not always possible in many families. Lots of hand washing, disinfectant wipes, and other safeguards should make it possible for your brother to enjoy time with his grandchild after his transplant.

Hope this helps. Let us know how Karl's donor search progresses.

Regards,
Ruth

[Martha M]

Hi Ruth;

I appreciate your speedy response to my post and answers to my questions. It was very helpful! We are trying to be as hopeful as possible but it a very scary prospect for my brother.

Another question, do you or anyone else know about getting compensation for being a primary caregiver? His wife, Robin, will probably need to take a leave of absence from her job. He will get long-term disability from his job but is it worth apply for social security disability as well?

Thanks again,

Martha

[Neil Cuadra]

Originally Posted by Martha M

Another question, do you or anyone else know about getting compensation for being a primary caregiver? His wife, Robin, will probably need to take a leave of absence from her job. He will get long-term disability from his job but is it worth apply for social security disability as well?

If you wouldn't mind, Martha, please click here to start a new thread in our Insurance, Finances, Disability forum, and repeat your question there.

That way, people looking in that section of Marrowforums will be more likely to spot it!

[Martha M]

Originally Posted by Neil Cuadra

If you wouldn't mind, Martha, please click here to start a new thread in our Insurance, Finances, Disability forum, and repeat your question there.

That way, people looking in that section of Marrowforums will be more likely to spot it!

Sorry Neil, I'm new to this whole process and don't really get how to do the threads/posting etc. even though I read the help section - not good with this stuff. But I sent it to the section you mentioned.

Martha