Danielle S.

[Danielle S.]

Hello Everyone,
This is my first post. and I need Help. My Husband/Best friend was diagnosed at the age of 49, is now 51.. Has MDS (RAEB-1).. First started with Neupogen Shots,,, Found out he was allergic, We were in Penn Hospital in Pittsburgh, Pa For 32 days Aug,2009.From a conditon called SWEETS brought on from the shots... For a year now he has been taking Vidaza Drips and things were staying level till this Fall they started dropping WBC's are 1.0 HGB.10.2 Neutophils. 0.2 Platelets52... Now they want to do a bone marrow transplant...... We hear bad and good about transplants... We are so scared.. We will go back to West Penn Hosp.. for this.. But need to know the success rate for MDS Transplants..... Thank you so much....

[Neil Cuadra]

Danielle,

I hope you and your husband can find some information and support at Marrowforums. This is a place where you can talk to MDS patients who have walked the road before you or are walking it right now.

It's unfortunate that Vidaza didn't continue to work for your husband. It made sense to try other approaches before discussing a possible transplant. Since a transplant is now on the table, you are wise to look for more information about it.

Have they done a donor search yet? Does you husband have siblings who can be tested to see if they are an HLA match?

If you've heard good and bad about transplants you're probably getting accurate information. Transplants can provide a permanent cure for the MDS, and that's what we all want, but they're risky. The odds are best for patients who are youngest, have the lowest IPSS scores, have a well-matched donor, are generally healthy other than the MDS, and have the best medical care. Age 51 is between the youngest and oldest transplant patients. MDS-RAEB1 is between the least-bad and most-bad MDS categories. So he's not the best risk or the worst risk as a transplant candidate.

If your husband's doctor considers a transplant the only choice then learning about the process and getting prepared should be your priorities. BMT InfoNet and the National Marrow Donor Program are good resources. If a transplant is not the only choice, you and the doctor need to be looking at the tradeoffs between choices, and it's a tough and personal decision. In either case, you might want to get a second opinion for further confirmation of what you've been told.

You can learn which treatment centers do the most transplants for MDS here. You can find statistics for the Western Pennsylvania Cancer Institute here. But every patient's individual case has to be evaluated on its own merits and the statistics about everyone else can't tell you your own prognosis. In addition, the statistics you find are based on past cases, and every year improvements are made to the transplant process that bring increasing success.

[Danielle S.]

Oh Neal, Thank you soo much... Yes he has a brother that matches 9 markers out of 10.... Is that ok to use? And My Husband Mark, Has a rear case (I guess) He has plenty of red blood cell. It's the white blood cell that are the problem... The call it Primery MDS...
I LOVE this site I thank you soooo Very much for thinking of others the way you have...
We just got this news yesterday, and after reading on here I stopped crying soo hard..... Thank you again.

[Al's Wife]

Danielle,

Try to take a deep breath and relax, if you can. My husband was recently diagnosed with MDS (May 2010), and we are still trying to recover from the shock. This illness is such a roller coaster ride that you need to try and strengthen up for the ride. Some days will be great and other days - well, you know!
All I can suggest is to read as much CURRENT information as you can to try and educate yourself. This forum is a Godsend, in my opinion.
If you are like us, we had never heard of MDS until my husband was diagnosed. He still chooses to be an ostrich and buries his head, but I have to know what we're up against, so I'm constantly talking to medical people and reading.
My husband was on Vidaza for 6 cycles, but unfortunately it didn't work for him, and he will be entering a clinical trial later this month.
If I can offer any advice it would be to try and not rush into anything unless it is absolutely necessary, check out all your options, get a second or even third opinion, and then decide what you and your husband think is best for him.
Just know that we all know what y'all are going through. We're all in this together. God bless you.

Linda

[Neil Cuadra]

Danielle,

I'm glad Mark has a normal red cell count, although with a low white count he has a higher-than-normal risk of infections. Do you know if his platelets are normal?

A 9-of-10-matched sibling can certainly be a transplant donor. They might search the bone marrow registry anyway to see if there's a 10-of-10 unrelated donor available, but if so I'm not sure which donor they'd prefer.

Primary MDS, also called de novo MDS, is better than secondary MDS, which is statistically more likely to progress rapidly and more difficult to treat. (Secondary MDS means MDS that resulted from prior cancer treatment or environment exposures.)

Linda's mention of a trial brings up another consideration. There are many ongoing and upcoming clinical trials for MDS. When you participate in a trial you may receive a new treatment or variation on the standard treatment, usually a certain combination of drugs, that researches think shows promise. You get top-notch care, often for free. In other words, you have access to cutting-edge treatment with less of a track record. It could help where other treatments did not, or it could be another unsuccessful treatment. For some patients trials provide a road to remission and a viable alternative to a bone marrow transplant, although a transplant is still considered the only cure.

Each trial recruits a certain class of patients so it's a matching exercise to see what's available for a given patient, such as a 51-year-old MDS-RAEB1 patient who was not successful with Vidaza treatment (which doctors call azacitidine). I don't know if there's a trial that suits Mark or if you'd even be interested in the possibility. You probably don't even know yourself, until you learn more about the pros and cons. You can search for trials yourself at clinicaltrials.gov. Here is the list of open U.S. trials for MDS. You can read and learn about trials at the Aplastic Anemia & MDS International Foundation and National Library of Medicine websites, but I think the way to approach it is to do these two things:

1. Ask Mark's doctor if a trial might make sense or if it should be ruled out. If he/she favors the idea, ask whether there's a specific trial to consider.
2. Call the AA&MDSIF and speak to their clinical trials specialist directly. They can get you information more directly and sometimes know of trials not listed at clinicaltrials.gov.

Although Linda is right that it helps to take a deep breath, you should know that if Mark will go to transplant, the sooner you schedule it the better. If you, he, and his doctor decide it's the best option, delaying will prolong the chances of things getting worse. That's one of the disadvantages of a clinical trial: if it doesn't bring Mark's counts back or helps only temporarily then the delay may have increased the transplant risk. If it seems like a Catch-22, it is. The doctors make very educated recommendations, but it's a tough disease and there will still be unknowns. Sometimes a patient's opinion about the risks and tradeoffs is just as important as the doctor's expertise in making treatment decisions.

When it became clear that my wife needed a transplant, we wanted to delay it a few months, thinking it would let us better prepare ourselves and our family, but the doctor explained why we shouldn't wait. Like many Marrowforums users, I'm a caregiver, not somebody trained in medicine, but I share what I've learned from my own experiences.

[Danielle S.]

God Bless you Neil and Al's Wife... Thank you soo much for the support...
Marks red blood count was 3.0. Not normal but higher than anything else. Platelets are 52.
This trial thing I am all for but like You said Neil He is getting older and so is his Brother (who is a very close match)... And that scares me soo much...I'ts just soo hard to wrap my mind around all of this... I feel so bad I am not stronger right now. He's being the tropper, he says it's all goona work out. I guess I just never thought it would come to this...
Yes we are going for a second opinion, (our Hemo Dr. recomended it)....
Thank you sooo much, I love this sight !!!!!
And Yes Al's Wife I have to stop and take a Deep breath... I think I am gonna start yoga, Just to put bring my mind to rest... HAHA

[Greg H]

Hey Danielle!

I'm sorry for your trouble, but glad to hear your husband has a great attitude about his disease. That's really important, because a strong positive outlook helps create the energy necessary to understand all this highly technical information -- and to fight the disease itself. Neil has already pointed you to some great resources and offered some super suggestions. I imagine your doc has already given you a bunch of pamphlets and booklets to read as well.

One of the resources that I have found particularly helpful are the webcasts and webinars sponsored by AA&MDS International and some of the other foundations and support groups. These are presentations by some of the top MDS doctors. I highly recommend watching every one of them that deals with Stem Cell Transplant, because every doc has a slightly different perspective.

You will find the AA&MDS online learning center here. You asked about the success rate for transplants. Neil has rightly noted that every patient is different in that regard, but there's some good data in the presentation you'll find at AA&MDS by by Dr. Matt Kalaycio. You'll want to watch that particular lecture when you are feeling strong and want information, not when you need a pep talk. We all go through periods with this disease when we are felling strong and can take whatever the world throws at us, and other periods when it feels like the whole world is crashing down on us.

You should watch some of the other presentations, too. They are all good and all slightly different. These transplant docs learn more and more about what works all the time.

If you don't mind me being nosy, how high is your husband's blast count? And what cytogenetic abnormalities does he have?

Is your second opinion going to be a consultation with a transplant center? Some folks only have one nearby, while others have more options (I have three to choose from near where I live in NC.) Transplant centers are all slightly different in their approach, so it can be good to check out more than one, if that's an option.

On the other hand, as Neil suggested, given your husband's risk of infection, you don't want to delay too long, particularly if his blast count is increasing or his chromosomes are picking up new abnormalities. Do you know his IPSS score? I've found the thing that makes me feel most powerful, most in control is to learn everything I can about the disease and my own condition. That way I can talk with the docs and understand what they are saying, and fully participate in the decision making about my treatment. But it is a lot of work!

Fortunately, there's a great bunch of folks on marrowforums who can help. Some have already had transplants; others are weighing the options, just like you guys. So stay in touch.

Take care,

Greg

[Danielle S.]

Hi Greg,
Thank you soo much.. The last report I have on his Blasts and such are from Aug 2009. his blasts were 6%.... cd4 neg.... cd117 positive Cytogenetics were normal..
That's when he was in the hospital ....
But now with treatment we get all the blood work but they don't have the blasts etc on them...
And your right this whole year 1/2 I have been doing sooo good, And I could take on the world.... I just am soooo scared and exausted now.... I dont let him see me like this, but I'm sure he knows, cause of the eyes HAHA....
I worry cause his brother is a 9 out of 10 match and I know they would rather have a 10 out of 10 marker match.... But I dont know how long it takes to wait for them to find a donor.... I just worry his levels are gonna keep going down.... We are to see his hempo dr. right after christmas but if his levels are low I dont think they can give him a treatment...
I tried to watch one of those web cams but I couln't get my old time pc to hook up too it,but than again I'm not that pc savey... so i'm sure I was doing somthing wrong....
No we dont have another place to go other than the transplate hospital, that's were we are going next week, I( I would imagine) they haven't called yet for an appointment... (hopfully today).... We have the Cleveland clinic.. But they too are a transplate hosp...
Thank you sooooooo much Mr. Greg H...

[Greg H]

Hey Danielle!

The folks at Cleveland Clinic are definitely amongst the best in the business, so, if you don't like what you hear from your first transplant hospital, you can always think of them for back up. Sorry the webcasts didn't work for you.

There is so much to learn about this disease that I am constantly being surprised by every piece of info I get. It seems like it's different for everyone.

I have only gotten reports on my blast count and cytogenetics when I have a bone marrow biopsy. If you all haven't had one in a while, the transplant hospital may want to do one to see what's what. That will give you more information to use in making your decision about what therapy to pursue.

Every transplant center has a little different take on things. The folks at Johns Hopkins, for example, have been pretty aggressive about pushing the edge of the envelope. For example, they sometimes do transplants on siblings that are just a half-match. So I wouldn't worry too much about the nine out of ten thing until you've talked with the transplant center.

Ditto on finding a matched unrelated donor. Some folks have a really hard time, but my transplant center found three ten-point matches in a week. It all depends on the individual. So there's really no way to know how hard it will be until they start the search.

I think it's really important to find a transplant center you feel comfortable with, assuming your health care coverage gives you the flexibility to shop around a little.

Take care!

Greg

[Danielle S.]

Hi Mr H,
Yes he has had 2 bone marrow extrations in the last two months and they said it hasn't gotten any worse or any better.... ( But the Dr. also said by doing the second one He may of missed the cells floating by and got other stuff , But I dont know the exact words.... Cause Marks levels have come down alot since the 1st one was takin a couple months ago...
Yes, We really like West Penn Hospital... We have gotten to know the MDS Drs there and We do feel comfortable with them.... Mark had the worst case of Sweets they had ever seen,so by the time he was diagnosed we had met 20 dr's... no lie... and we got close with a couple that we saw all of the time...
Yes Clevland Clinic is a GREAT place.... But I am soo worried about wasting time, when west Penn has his records etc....
Greg your awsome, thanx for your time..
And I'm sorry I dont know you story... Is there a place I can go to read it... This is all new to me.... And again I'm not real pc savey haha... I always have to point that out.... Tee hee
I'd love to hear your story, and Neils story and Al's wife's story...

[Greg H]

Hey Danielle!

Sounds like you have a good team at West Penn. Mark's bone marrow reports probably have cytogenetics and blast counts in them. You might have to ask for copies to get a look.

I'm sure Neil can point you to his and his wife Ruth's stories (which involve a real transplant success).

You can find out about what I'm up to by reading this thread.

And, for a good laugh, you can read about my crazy last bone marrow biopsy.

Or you can check out my blog about my MDS at www.greghankins.com

Take care!

Greg

[Danielle S.]

Hi Folks,
I spent the weekend reading All of the posts on here.
I cried, Laughed, Cussed and yell horray !!!!! so many times.... I have never been involved in such a wonderful site.... Thank you all... Greg, I read your story too.. I am soo happy for you....
Neil, You are such a great support to your family and us all....
I read so much, I feel alot better about things, But I read sooo much that I now have the stories messed up... HAHA ..... I went to bed ( after watching the big game ) ... Feeling a little lighter Thank you