Newly diagnosed

[Robsocal]

My name is Rob, I am 43 and live in Riverside CA. I was diagnosed with MDS less than a month ago after spending a week in the hospital with pneumonia. I am so thankful I found this site - I have learned so much from it already. I am told that I am in the intermediate - high risk catagory, and will need a bone marrow transplant ASAP. I have been approved at City of Hope, unfortunately no family members were a match but I have 156 possible matches on the registry. My blasts are <4%, WBC'S 1.9, HGB 11.1, RBC'S 3.77 and platelets are 79. This has been quite a month, I have much to learn. I look forward to any information/advice I can receive on this site. Thanks everyone!

[Nancy D]

Hi Rob, I'm also in So Cal and going through the City of Hope, am 52 and very new to this. Was your pneumonia related to the MDS or coincidental? Your count problems are different than mine---- my big problem is hgb which are falling. I seem to get persistent coughs when my hgb is really low, but no one has confirmed this is related, but I definitely wonder, which is why i'm curious about the pneumonia.

They are going back and forth between a wait and see, and needing a transplant. My only sib is not a match, so they are doing a search--- I have preliminarily 3 exact and 200 close, but don't know anything else here other than further inquiries and testing need to be done. Dont' know what my blasts are, haven't known anything about that until reading these boards, so I guess I need to ask that. You say you are intermediate-high risk, do you know why? I'm intermediate 1-- but don't know my risk factor, just seem to have been led to believe its early but worrisome....

[Robsocal]

Nice to meet you Nancy - Like you, this is all new to me and I have much to learn. Looking back, the only symptoms I had were easy bruising and sometimes bleeding gums when brushing. Never really gave it a second thought except maybe improving my diet. October 9th I went to the hospital (first time ever, rarely have I ever been sick other that a cold) where I was admitted and ended up staying for over a week. My main problem was low white blood cell count. A week after the BMB I was given the news I had MDS. Contracting pneumonia was a blessing in disguise or I may have gone a lot longer still not knowing. I was told the pneumonia was not caused by the MDS, but that I had such a hard time getting rid of it because my immune system was compromised. I start some kind of treatment Monday (5 days on, 15 off) I forget what it is exactly.

My spirits are high, and I am determined to learn all I can as soon as possible so I can come up with a game plan for my future. Doctors estimate I have had this for quite some time. I am placed in intermediate 2 catagory because of abnormal cells I think. I am surprised they want to perform a BMT so quickly without giving drugs a chance to stabilize things.

Good luck to you!

[Neil Cuadra]

Originally Posted by Nancy D

Hi Rob, I'm also in So Cal and going through the City of Hope, am 52 and very new to this.

The City of Hope is top notch in every way, so you are in good hands. I hope you get more details about your condition, treatment, and the doctor's recommendations.

It's good that you have 3 potential donors already, in case you need a transplant. It takes only one matched donor, but they also have to be available and willing, so having additional matches is more reassuring.

[Robsocal]

Thank you Neil, I am told that City of Hope is one of the best places to be, and I am fortunate to be in such good hands.

I got a call from one of my oncologists yesterday stating that they have decided not to start me on medication Monday after all since the likelihood of finding a donor for me is so high. I am perplexed and very apprehensive. Is it likely they have found a match for me already but don't know for sure so they aren't telling me? I feel it's odd that they are giving me a BMT so quickly (less than a month after diagnosis) without trying any kind of drug or alternate treatment. Is this common? I would appreciate hearing from anyone that knows someone or has experienced this themselves. I feel great at the moment. I was also told that the mortality rate is very high (one in three don't make it out of the hospital) so needless to say I am very scared... I am thinking that if drug therapy can stabilize my numbers then maybe I don't want a BMT just yet.

[Nancy D]

Rob, I don't have a lot of informed answers as I'm new to this too, and I've read the statistic about not getting out of the hospital, but I have been told that the statistic these days is actually much lower. At least I hope so. No one has discussed drugs as a possibility with me either. I either can stabilize or I need a BMT as the only potential cure, and so reading about all of these drug therapies confuses me as well. I'm very scared too, but for what it's worth, since my diagnosis, people have come out of the woodwork with success stories from BMTs.

[Jill2008]

Rob,
I was diagnosed with MDS in July at the age of 47. I haven't had to have any transfusions and haven't been started on any drug therapies. Like you, I was told that I should have a BMT done as soon as a donor was located. Both my hematologist and transplant specialist told me this was the best treatment due to my young age and relatively good health. It is also the only known cure. Most patients diagnosed with MDS do not have this option. Luckily, at my last doctor's visit my counts had stabilized, so he felt that it would be reasonable to wait. My counts are being watched closely and I will be re-evaluated in January.
I know what your going through. Do they offer any classes for BMT patients at City of Hope? I took a class at Stanford and also met with my social worker there. They answered many questions about the transplant and this helped alleviate a lot of my stress.
I wish you the best of luck with your decision.
Jill

[Neil Cuadra]

Originally Posted by Jill2008

Do they offer any classes for BMT patients at City of Hope?

At the City of Hope we were given a huge notebook with information about the transplantation process and what comes before and after it, with many practical tips. We were also given a personal tour of the facilities and assigned specific contacts so we knew who to go to for medical questions, procedural questions, or support from a social worker.

Organizations like BMT InfoNet can also provide information (although not specific to a single transplant center) in the form of publications (example), news, and connections with other patients.

[Robsocal]

Thanks everyone. I am reading all I can about this disease and have learned much from this website. My numbers were pretty good from the last blood test but they are starting my on Dacogen Monday anyway. I am confident that the side effects will be few. It seems strange to start drug therapy when I feel great and my blood counts are holding, but my dr.'s are insisting. Does anyone know if drugs such as Dacogen/Vidaza can actually make you worse? I would love to hear more success stories from long term survivors that had unrelated donors. I met with a social worker from City of Hope yesterday and that was very helpful. She gave me a huge amount of information to go over.