nervous again in NJ

[ramey2148]

Ok, so I have been doing preety well and probably had the "it’s not happening to me syndrome" and have not educated myself. I know very little so excuse me but I will give what little info I do have. My chromosome 8 is abnormal, my red blood cell count is 9.2 and the blasts in my recent bone marrow biopsy are 16%. My Blasts in the previous one was 12%. My Doctor said I need to get a bone marrow transplant now (both brothers tested and neither matched). Does anyone out there really think that I do not need one. My WBC was 2.0 and is now 4.9 which I thought was good. Really confused about the news

[ramey2148]

Oh and I am 32 years old

[jimkufis]

Hello Ramey. Jim Kufis here. From the little information you have provided and your age I would suggest you go for the bone marrow transplant as recommended by your doctor. Your blast percentage is high and a good reason to get this done. For further confirmation, a second opinion from another hematologist may help.

The only cure for MDS is the bone marrow transplant and the success rate for this is higher when you are young. I think this is the best chance of getting rid of MDS and returning to a normal life.

[ramey2148]

Jim,
Thank you for responding and your advice. It is my fault for not educating myself previously and now I a get so tired and frustrated.

[Mary4Mike]

Ramey,
I agree with Jim that the amount of info you have given us is little to give advice on. With the little you told us, I would have to agree with the transplant advice. You have abnormal cytogenetics, you have excess blasts that seem to be climbing in number, and you are young.

Are they running you through the Bone Marrow Transplant donor lists? If I were you, I would get a second opinion and also have my name put on the list for a donor search. Sometimes it takes a long time to find a match.

Keep us up to date on what you decide to do. If you have questions, ask. If we can answer them, we will. That is the point of this forum.

All the best,
Mary

[ramey2148]

Mary,

They are doing a donor search now. I guess thay say the average wait is 110 days but could be longer. Does anyone know any way to get more energy by using suplements? I work 7am-7pm, 4 days on and 4 days off schedule, and I get real tired half way through my shift. I am a Police officer in a decent size department and the guys cover my calls so I can take a nap. I really don’t think I should be so tired considering I see people on here with ALOT lower red cells than me. Any advice would help.
Thank You,
Bob

[Kenneth_In_Va]

Hi,

You mention that your Red count is 9.2. I’m gonna guess that’s Hemaglobin. I know when I was first diagnosed, mine went down to 8.5 and I had no energy, poor short term memory and was very grumpy. I was, and still am, working 8 hours a day. I can’t imagine 12 hours at that level. You have to keep in mind that the average age for folks with MDS is retirement age or higher. I was 62 then. I think your younger age is really helping you out.

Like Jim suggests, BMT is the way to go especially at your relatively young age. Have you had a Bon Marrow Biopsy (BMB) as of yet? If so what were the results?

Good Luck with the Donor search.

[ramey2148]

Yes I have had 3 BMB already (in 6 months time). Each time the blasts have gone up. I go back to my doctor on Wed. so if you have some good questions for me to ask just let me know and I will tell you the answer. I am not really sure what other info I would get from the BMB other than the blasts %.
Thanks,
Bob

[jimkufis]

Hi Bob. Jim Kufis here. Ask your doctor about your cytogenics. In particular if you have any abnormal chromosomal karyotypes. This is important to determine if you have mutations of particular chromosomes. I have a mutation of the third chromosome. Many MDS patients have a mutation of the 5th gene called 5Q-. This is a case of one of the long legs (Q leg)being missing and a couple of genes being transposed.

[Mary4Mike]

Bob,
The biopsy will tell you what type of MDS you have and compared to your other biopsies, it will tell if or how your disease is progressing.

During the 10 years prior to my husband’s transplant and even now, I have tried every supplement imaginable. None ever gave him a boost in energy, but I still feel it built up his body in a way that helped with the success of his transplant and also quicker recoveries from the chemos that he tried prior to transplant.

Has your doctor suggested Procrit or Aranesp injections as a way to raise your red blood cell count? What about transfusion? In the beginning, a patient usually gets a physical benefit from transfusion. After a while though, my husband never felt much better from them……he had over 140 units of packed red blood cells.

You are young enough that a transplant is a pretty good option. The thought of feeling tired for the rest of your life probably doesn’t sound like an applealing option. That is why my husband opted for transplant and so far, we are thankful that he did. It is the best he has felt in years. Don’t get me wrong, there are still issues afterwards, but nothing so far that he says he can’t live with. He says he has a feeling of "well being" now.

Let us know how things are going. It is great that the guys at work are helping you out. My husband always found that when he pushed himself too hard, he paid for it later. When your red blood cells are low, your body is screaming for oxygen. This effects every part of your body, not just shortness of breath. Take care of your self and keep us posted.

Mary

[ramey2148]

Thank you for your advise and knowledge. I will try to get the answers to your questions. I thought they told me my chromosome #8 was the one that was abnormal. In fact I am pretty sure of it.
Mary4Mike,
Is you husband the kind of person that works out? I don’t have any energy to that anymore and I am wondering if he has the energy to do it after the transplant. I FORCE myself to play softball (in the men’s league) but I pay for it. It is only one day a week but it is the day I get to feel most normal. I really would just like to know if I will have a normal life after the transplant.

[ramey2148]

Well I went to the doctor today and they gave me 1 unit of blood. Not sure if it’s working because they gave me benedryl before the blood, so I still feel tired. My Hemo (red cells) were 9.1 and I have blasts in my peripheral blood again.

[Mary4Mike]

No, my husband has never "worked out". As his disease progressed over the years, he became very sedentary. He became short of breath, especially when his HGB was lower than it usually was. He required transfusions everyother week (2 units), but eventually it didn’t give him a boost in energy and it didn’t take his HGB up much either. Apparently, this can happen after many, many TXS. The body doesn’t use it the way it used to. Mike said that the body (and the mind) gets used to functioning on a low HGB. His ran between 8 and 9. He has worked full time since diagnosis in 1999. He is in sales so it isn’t a physical type job, but it does require mental sharpness and that isn’t always easy when your counts are down. It is funny that you mention softball. We went to and watched our church team play the past couple of years. They were always trying to get him to play and believe me, he wanted to. He told me that he didn’t think he could run to first base. Well, he IS playing this year. His legs and arms are weak because of years of inactivity, but he is slowly building them up again. You will have a normal life after transplant, but there will be numerous check ups, daily pills, and a higher level of being "germ-free"…..hand sanitizers, etc. This is a small price to pay to feel good again. Everyone has a different experience, and we are here to say that Mike’s was a breeze. Not everyone’s is, but you do have your age in your favor. You haven’t done any of the chemos yet, so you don’t have that DNA damage to deal with either.

It is pretty standard to give benadryl and Tylenol pre-TX as a prophylactic treatment against reaction. If you are going to get a boost from the TX, and most likely you will, you should feel better today. I pray that you feel better.

Keep us up on what is happening with you. We care.

Mary

[ramey2148]

I feel much better today. For the 1st time in a while I don’t feel like I need to sleep all day. I guess the extra blood has done wonders. I hope it last until I go back in two weeks. I actually feel semi-normal again. Well thanks for the response and I will keep you posted.

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