OMG what does this mean

[rainbows and glitter]

Ok, I have mds and I have a rare genetic mutation called GATA2 that causes me to not have any monocytes in my blood. I also have a few viruses on board that complicate things. My doctors want me to have a bone marrow transplant this summer at the NIH. They say I need an escort/caregiver, what will be expected of this person? Will they be bathing me? If I only get chemo for five days or whatever like the websites say will my hair fall out? Am I gonna be so sick the whole time I just sleep? I don't know what the heck to expect and the correspondence from the transplant team so far is not cutting it for my over reactive imagination. What about my home? How am I gonna pay for my things here when I'm over there in a hospital? They told me on their protocol they haven't lost any one yet...is that baloney like what are my risks here seriously? I still work and everything I know my problems have been getting worse but this seems dramatic...they said though that there's no blasts and I am in good shape for the transplant AND they found multiple matches even though I am Alaska native Caucasian mix. So I am freakin out....

[dpmeeks]

First of all try and stay calm...I understand your worry I was the same way. Worrying isn't going to make things any better, I know easier said than done.
I don't know much about your diagnosis, but, I have been thru the chemo and transplant process. As far as the chemo is concerned it affects everyone differently, some people get really sick and some people don't. In my situation, I lost my hair (most people do) but that was about it. As far as a caregiver, you will probably need someone, chemo takes a lot out of you as far as strength and you wont feel like doing much until your numbers recover and you have to watch what you eat, who you come in contact with, etc. If you need help bathing, im sure the hospital will help you. I never needed help. Chemo usually affects you after your done with it. Its usually not an instant kind of thing. Youll learn to watch your numbers and when they drop is when youll start feeling it. Don't lay in the bed, get up and walk as much as you can.
My suggestion to you is.. sit the doctor down and have them explain it to you until you completely understand the process and tell them your very upset. Another thing, is your attitude ! You have to get it in your head that your gonna beat this and you will. After a couple days in the hospital and restoring my faith in God and asking for his help I had my mind made up I was gonna beat my cancer and so far im doing great . I pray everything works out for you..

[Neil Cuadra]

rainbows and glitter,

Every transplant is different but I can try to answer your questions based on my own experience. My experiences from years ago may not be as relevant these days so I hope you will get some more useful information directly from the NIH.

I think that a caregiver should be someone who can listen to the doctors and nurses and take notes. For example, if the doctor comes in to check you and tell you how you're doing, but you're conked out at the time, your caregiver can listen and write it down. Your caregiver can keep track of questions you have and remind you to ask them or ask on your behalf. He or she can help you call for a nurse if you need one. They can talk to you when nobody else is around. They can find the slippers that disappeared under the bed, keep you steady as you walk around, help you deal with hospital bureaucracy, make sure you fill out your meal menus on time, help you stay connected with the outside world, or deal with other situations that come up as they come up.

Your caregiver doesn't have to be a nurse and doesn't have to help with bathing or dressing or the bathroom. They don't have to be there 24 hours a day, but the more time they can be there during the day, the better it is for you. Some people go it alone in the hospital, but I think that having another person there with you helps immeasurably. It's often a spouse, parent, sibling, adult child, or a very close friend.

What the caregiver does depends on who it is and what your relationship is. The two of you can work out the plan so you both have realistic expectations. I hope there's somebody who can help you this way.

Chemo affects hair, and some patients lose it all right away, but that's not always the case. My wife's hair just got thin after she got chemo and radiation. Either way, your head can get cold.

Most patients sleep a lot, and many feel icky some of the time. Medicine can help. Side effects differ from patient to patient and case to case, and sometimes you just have to roll with the punches. You might have a rash one day, an upset stomach another day, and feel pretty good another day. Or you might be fine the whole time.

NIH is a bargain (free!) but you still have bills at home. Patients should check if they qualify to go on state disability. Some employers may support other arrangements, such as the use of paid vacation, sick, and personal time. Another consideration is what to do about expenses of the caregiver. It's not uncommon for patients to rely on their family members to help with expenses.

If people at the hospital are implying that every single transplant patient survives every transplant, that's incorrect. Most patients get through their transplant, but a minority do not. A transplant can save the life of someone with a potentially fatal disease, but sometimes the disease has progressed too far, and the transplant procedure itself has risks. Whether the survival rate is 70%, 80%, or 90%, you are always taking a chance with any treatment for a life-threatening disease. But if they were talking about "their protocol" (whatever that means) then that's presumably something more specific. If the doctors who know your specific situation are showing confidence, that should give you confidence too. Given your young age, lack of excess blasts, and multiple donor matches, it seems to me that you have a lot going for you.

Not everyone admits that they are freaking out when they face something scary, but any sensible person would be worried about the possibilities. The best you can do for yourself is to establish a working relationship with the doctors and nurses, ask lots of questions until you know more about what you're up against, let that knowledge build your confidence, and go forward.

[Sally C]

Dear rainbows and glitter,
I think you have gotten some very good, hopefully calming advice so I'm going to just try to give you some insight into NIH. I assume it's the one in Bethesda, Md.
My husband has been in clinical trials there since 4/09. We both believe they saved his life. Do not hesitate to ask any questions regarding anything to do with your care, hospitalization, hair, illness - or anything else for that matter. We have always had the doctors' and nurse's e-mail addresses and they have been amazingly quick with their responses - and extremely patient with any and all questions we have had.
When they talk about their protocol - they have a very strict criteria they have to follow before they can accept a patient. They turn many down - some that are members of this Forum. So when they say they haven't lost any patients within their protocol - they mean any patient who they have transplanted that fit the same criteria as yours. They are not in the business to mislead as they are extremely caring people whose personal and professional reputations are on the line. The #1 hematologist in the world - Dr. Neal Young - is over hematology. Their doctors are the cream of the crop and are on the cutting edge. I can honestly say that you can trust them with your life. We did with my husband's. He has MDS and at one point he was on his local oncologist's "death list". Since the last clinical trial he participated in (Promacta) he has been transfusion independent for about 1 1/2 years after two years of about 135 transfusions. Right now he is on no MDS meds. We still go every 3 months for a check-up - and as Neil said - all his care has been free. His whites and reds are now normal and at last check - this week - his platelets were 108,000.
Please feel free to e-mail me with any questions or anything else I can help you with. shcalvert3@aol.com.
God Bless,
Sally

[rainbows and glitter]

Thanks for all the help! I've felt like no one could help prepare me for this cause no one I know has even ever met anyone who had a transplant like this. Everything you guys have said helps. Even just knowing that other people who are worse off than me have overcome similar situations. It's beginning to look like I am going to be alone though. Is it a lot harder to go through alone? Sure wish my mom could go but we both work and we can't both take off the next half a year. Thanks for all the help anyway!

[rainbows and glitter]

Originally Posted by Sally C

Dear rainbows and glitter,
I think you have gotten some very good, hopefully calming advice so I'm going to just try to give you some insight into NIH. I assume it's the one in Bethesda, Md.
My husband has been in clinical trials there since 4/09. We both believe they saved his life. Do not hesitate to ask any questions regarding anything to do with your care, hospitalization, hair, illness - or anything else for that matter. We have always had the doctors' and nurse's e-mail addresses and they have been amazingly quick with their responses - and extremely patient with any and all questions we have had.
When they talk about their protocol - they have a very strict criteria they have to follow before they can accept a patient. They turn many down - some that are members of this Forum. So when they say they haven't lost any patients within their protocol - they mean any patient who they have transplanted that fit the same criteria as yours. They are not in the business to mislead as they are extremely caring people whose personal and professional reputations are on the line. The #1 hematologist in the world - Dr. Neal Young - is over hematology. Their doctors are the cream of the crop and are on the cutting edge. I can honestly say that you can trust them with your life. We did with my husband's. He has MDS and at one point he was on his local oncologist's "death list". Since the last clinical trial he participated in (Promacta) he has been transfusion independent for about 1 1/2 years after two years of about 135 transfusions. Right now he is on no MDS meds. We still go every 3 months for a check-up - and as Neil said - all his care has been free. His whites and reds are now normal and at last check - this week - his platelets were 108,000.
Please feel free to e-mail me with any questions or anything else I can help you with. shcalvert3@aol.com.
God Bless,
Sally

Can I ask you how long the transplant was? How long did you stay there at the NIH?

[Sally C]

Hi rainbows and glitter,
I'm sorry if I didn't make myself clear. My husband did not have a transplant. He was in-patient at NIH for 2 weeks in 4/09 in a Campath clinical trial. He has also been on Cyclosporine through them and the latest trial was for Promacta.
I was just trying to give you a perspective on NIH as a whole and to try to reassure you that they not only can be trusted, but they are the tops in their field of Hematology.
I also wanted to encourage you to be bold about asking any and all medical questions that you might have. They have always been extremely responsive to us.
I know this is all scary to you - being so far from home, needing to keep things going while away - and then the fear of what you are going to face with the transplant. But in my opinion, you couldn't be in better hands than at NIH.
Please feel free to ask me any questions regarding NIH. I will be glad to try and answer them.
Take care and God Bless,
Sally