Newly diagnosed – would like any input.

[newfintexas]

Hi all, Brand new here, and hoping to maybe get some insight into what we have facing us going forward. We as in my hubby who is 56 was newly diagnosed about 2wks ago after being admitted to the hospitsl very short of breath – rbc were 4.8. Four transfusions and 3 days later they were up to 9.8 and he was released. The next week bloodwork showed rbc at 10 and we thought great. Visit with oncologist brought the dx of mds, we are still waiting on chromosome and a couple of marrow texts to tell us what level/score. His wbc and platelets are also low. This weeks blood rbc was down to 9, wbc at 3 (but we were told some part of the wbc -nutrients? have fallen more from 1300 to 1200) and platelets have fallen again and now 90. We of course are scared, not knowing what all this means, what score the other tests are going to bring in. Oncologist has already told us transfusions will be used, chemo and bmt are also options he is looking at. Has anyone had low levels like this in bloodwork and still been able to maintain living without any other worsening conditions happening? Any info we can get will be helpful and appreciated.

[bobweinberg]

A lot depends on your IPSS score, so you will need to wait for your marrow test results. It is most important to have a hemotologist/oncologist ("hem/onc") from a MDS Foundation Center of Excellence. There is a list on this website. The doctor must be very familiar with MDS. When you say your RBC’s went from 4.8 to 9.8, do you mean hemoglobin level rather than RBC (red blood cell) level? I have lived with MDS for over 14 years (working 12 of those years full time and now part-time) and being transfused on a regular basis. There is no reason to panic. People are living longer and longer with this disease. The Foundation has a lot of good material on the website. Good luck!

[newfintexas]

Thanks so much for writing back….Yes that was the hemoglobin level. He was admitted to the hosp in Nov with low reading of 5.4. The Oncologist is telling us that this one has nothing to do with the Nov admittance when my hubby had pneumonia etc. This time absolutely no sickness, just short winded. The oncology/hemotology dept that has taken his case is at the SAAMC military base of excellence – and seems to have a very strong oncology team within the internal medicine. We are still very new to all of this, but it certainly can drive you crazy. This waiting is the worst. It is realllly good to hear that you have been living with this, seems fairly normal for a long time. Are you also dealing with iron overload?

[Anneg]

hi newfintexas:

first off welcome, you have come to the right place. there is a lot of info and support amoung our group. Not everyones MDS is the same. Some live with it for years and others don’t. I was diag. right before christmas last year. mine is the result of breast cancer treatment. I have to have a BMT to survive. otherwise I have about 1 and a half years. Chemo is vidaza and revlimid. they have been known to not work or only work for two years. My counts are always low. blood transfusions at least twice a month. highest is 10.9, plalettes down to below 10, white down to .1. I get blood when counts are below 8, platletts below 10. Main concern is infection so keep eye on white count and stay away from anybody who is sick. That will harm you more than the MDS. My doc is from Moffitt Cancer Center. Hes outlook on iron overload is a little different. He really doesn’t do anything. He has never know anyone to die because of it. Treatment can be more harmful than good. Good Luck and hold on. It can be a rollercoaster ride. Just stay informed.

Anneg
God Bless

[Mary4Mike]

Anne

I found your comment about your doc’s view on iron overload very interesting. I have to agree that sometimes the "cure" is worse than the ailment. Is your doctor, Dr. Alan List?

BTW how are you feeling and is the transplant a go?

[Anneg]

Hey Mary:

No it is Dr. Lancet who trained under Dr. List and my oncololgist i WPB Dr. Gresten also, trained under Dr. List. I am very fortunate to have found the group of doctors that I have. Hope all is well

Anneg
God bless

[Andy R]

Definitely a roller coaster ride but you will get through it. I am about to reach one year out from my bone marrow transplant. I recommend you start a blog of your experience. It will help you in keeping a journal and your friends/family can subscribe to it for updates. Please feel free to check mine out at Andys MDS Journal for a walk through my process to recovery.

[merc]

Hello Everyone, I am new to this forum thing but not to MDS. I’ve had it for 3 yrs now and have only recently taken it seriously enough to look into support groups. I’m very angry with the insurance companies because they lowered the hemoglobin count to 9.9 it was 10.9. This last month I not only had to go through a breast biopsy for cancer but my blood count also went down to 9.9. I couldn’t even climb the stairs to go to the bathroom it exhausted me. Then I sit here and read where you all are dealing with transfusions, transplants and I thank God I haven’t reached that stage. My heart goes out to you. Thanks for listening.

[Anneg]

You are welcome:
That’s what we are hear for. Be glad that your company is 9.9. Don’t know if it is my insureance or the medical field. I don’t get transfused until mine is below 8.0. Just got transfused yesturday count was 7.2, I couldn’t even walk to thehospital for tranfusion had to ride in my 2wheel chariot that my kids and e remember to smile everyday be thankful for the real little things is life they will get you thru. Good Luck and my God Bless you and your family.

Anneg
Smile
God Bless

[newfintexas]

Hi…thanks everyone for your input. Hubby’s rbc count is falling again pretty fast, dr doesn’t want to do another transfusion until below 7..he is at 7.2 but he does not show the symptoms that some of you are – not very tired or winded. At 4.8 he was very winded and tired of course..but dr wants to wait until symptoms or below 7 due to it causing a problem with bmt. He has said that hubby is intermediate refractory multilineage – sorry if I don’t have that exactly right. We meet with him tomorrow to discuss treatment etc. He is an oncologist, seems cautious in diagnosis but doesn’t beat around the bush which we are so glad for.

We are still waiting on chromosome test to come back or maybe it is and will be discussed tomorrow. I guess it is scary for me due to hubby only being 56 when they keep talking mid age to be about 70. Keeping fingers crossed for tomorrow.

Thanks again and please keep posting. I will also be looking at the blog and seeing about setting one up to follow this, I do track our numbers and blood test results etc so we can watch what is going on.

Thanks again

[bobweinberg]

Regarding your question on iron overload, I have been chelating daily for 13 years. First an 8 hour daily subQ infusion using desferal. Since 2006, I have taken 2500 mg of Exjade daily.

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[pcmcmeans]

Hello people. My name is Carol. I am 56 years old and my father has MDS. I had never heard of "pre-leukemia" until now. He is 82, in very good physical condition – well, except for having a triple bypass 20 years ago. He and my mom live on the river here in Alabama and he works like a horse keeping the place mowed and trimmed. He works on everybody’s cars and boats and whatever else they have that tears up; i.e., refrigerators, washers/dryers, decks, mowers, furniture, etc. He is your consummate "jack of all trades". He was in the Army for 50+ years and never learned how to "play". So essentially, he works ALL THE TIME! I don’t have the numbers from his test results, but will get them from my mom or his doctor and post them here. Is that test on this site where you punch in the numbers and it gives you a quasi-life expectancy of any benefit? My dad and my mom (especially my mom) are pretty scared and I don’t think that the doctor has been able or willing to answer a lot of their questions. Today’s appointment was "rushed" according to my mom and the doctor "didn’t have time to answer my dad’s one and only question." I told her it’s time for another opinion from another doctor. They are the kind of folk who still put doctors upon that god-complex pedestal and don’t want to "bother" them. I, however, don’t mind one bit, that’s what they get the big bucks for. Anyway, thanks for being here and I’m sure that I will be back with an abundance of questions. I wish you all well and look forward to corresponding with each of you.
Thanks again, Carol
p.s. I’m somewhat scared,too.

[FieldsSchor]

Hi Bob….my husband was newly diagnosed with MDS about a month ago. It sounds as if you have not had a bone marrow transplant? I would like more information if you don’t mind as to how the process went for you. Thanks, Sharon

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