remission

[marylinda]

I was diagnosed almost 6 years ago and responded very well to Procrit until last Dec when for 5 week I was given weekly injection of increasing doses of Procrit but the blood counts remain very low. I was given 3 units of blood and than hospitalyed with double pneumonia and other prob;ems. I was hospitalzed 3 times between Christmas 05 and the end og Jan 06 and went home on bed rest. I was extremely week and needed nursing etc. I am 55 years old.

Since than my blood counts have remain ok and I have not gotten any Procrit shots or blood. Has anyone else experienced this. The doctor doesn’t have many answers and I am not complaining. I am still quite tired but not totally exhausred as previously.

I was diagnosed in NH and Dana Farber and New England Medical Center. NEMC was planning on doing a bone marrow transplant but there was no match. That of course was fortunate for me. I am medically disabled and have some other problems but blood wise seem to be doing exttremely well.

I don’t know if it’s remission or what but feel very fortunate at least for now.

[Carl]

marylinda,

My doc won’ give me a red cell booster like Procrit or Aranesp unless my HGB count is below 11. In my case the insurance won’t pay for it. The only way the docs can tell if your are in remission is to do a bone marrow biopsy/aspiration and have a patholigist give them the results. You are going to a center of excellence at DANA FARBER and there are several other treatments available now for people with MDS other than a bone marrow transplant. Keep your options open and ask a lot of questions here and to your docs.

[marylinda]

I’m a bit of a coward. Is there any reason to know if in remission or not? I mean as far as medical treatment goes? My hemotologist seemed to base treatment strictly on the blood court. Is there any preventative things to do to avoid it getting worse again? I am still extremely tired and out of breath very easily.

As far as I know the anemia was all that was treated and it seem to have corrected itself. I know that’s unusual as MDS affects the way blood is produced. My blood counts have been high enough where I havn’t needed Procrit or transfusions for about 10 months.

It would be nice to know for certain I’m in remission but remission doesn’t last forever so I’d probably have to keep getting blood tests.

The BMB I had were extremely painful and I will do about anything to avoid them. They thought it was partly because I have had 2 spinal fusions with bone removed from both hips. Anyways it was terrible. Both times were in the hospital.

I like to think pray has been helping and know I am very fortunate.

[Carl]

marylinda,

Don’t feel like a coward or overwhelmed because you have this disease and you have questions that remain unanswered. Make yourself a list to dicuss with the doc and be sure to take someone with you to keep up with the questions/answers. I have on several occasions recorded my visit with the doc on a small personal recorder with his permission just to be sure I remembered what he said to my questions.

If you are in remission the only way that can be confirmed is by a BMB. The ones I get are very painful too, so I opted for sedation that makes getting them a breeze. I have to be admitted to the hospital and they do it on an outpatient basis and I don’t feel a thing. You should insist on this as well.

Remember it is your body and your life, so you must take a proactive stance in your treatment and ask any question you have. If you are not getting the answers to your questions, change docs. or clinics.

[chuckk333]

I fortunatly have had practically no pain for the 2 BMB that I have had. In both the procedures they started out with a local on the skin and then on the bone and waited a while for the bone anesthesia to be effective. Did they do it fo you all?

[paml]

Marylinda,

I was dependent on Neupogen for 3 years and Procrit for 8 months. Both my Neupogen and Procrit needs diminished and I’ve been off all growth factors since April of 05. My counts are currently excellent; I’m well, and active. Remission, not really, the underlying disease is still there as is evident in August my MCV count of 108. My disease history is such that my marrow will start to work effectively enough to sustain my needs. When will it stop or slow to a crawl, who knows. No BMB needed at this time for me, the disease really hasn’t changed as much as my marrow is functioning at that higher level. I don’t kid myself, my WBC is in the 3 range and with an illness could potentially tank.

Enjoy the reprieve and continue to take good care of yourself.

Best Regards,
Pam L.

[Caroline]

Marylinda,

I don’t know if MDS patients go into remission but my Dad seems to be in a similar position to you.
His Oncologist does blood tests every month. About 6 months ago, Dad was told that he didn’t have to go to the doctor’s office for a visit for 3 months. After his next visit he got another 3 months “off” even though he still had a blood test done every month.
Last week we went to the Oncologist and he told us that Dad does not have to go back for anymore visits at all unless the doctor phones and requests an appointment. Dad still has to go to the lab monthly for a blood test but he doesn’t have to see the doctor. If they see something in the blood test that they don’t like, they will phone Dad and tell him to come in. The doctor didn’t call it remission. He said that it is an “extended holiday”.
Dad still sees his Kidney Doctor every three months. That doctor gets a copy of the monthly blood tests as well and he decides how much Aranesp Dad should get and they phone to tell us how often I need to give him his needle.
Dad isn’t as healthy looking as I would like to see him but as far as his blood counts are concerned, he is doing very well.

I am glad to know that you are doing better.

Blessings.
Caroline

[Jimbob]

Marylinda,
Gald to hear the you are doing better. Just a suggestion, this may be a very good time to look at alternative and natural methods to improve your overall health. I reccommmend you find some alternative healthcare providers and nutritionist who have had experience with MDS patients AND run by any of their suggestions past your specialist to make sure that they won’t interfere with anything they might do for you. Unfortunately many MDs are not aware or willing to accept alternative methods or even nutrition as being helpful but will most will not totally negate it unless ther is a specific part that is likely to interact with their treatment.
Hope that blood counts will show constant improvement and no need for BMB!
Jim

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