What the Oncologist said

[franm]

Hi everyone:

Jim and I just came home from the Oncologist. This is his score on his blood test. WBC 3.5
RBC-3.40, Hemoglobin: 12.4, Hematocrit-35.0
MCV: 103, MCH-36.4, Platelets-98, Glucose, Serum-175. The Oncologist that he has been seeing is just playing a wait and see game with us. He has been going to her since last September. I hope we are doing the right thing about just waiting and doing nothing at this time. She told Jim that she will take another BMT in April. Until then….Nothing. His last BMT was in August of 05. At that time there was a 10% Blast in his bone marrow.

Does anyone have any idea’s that can help my husband. He is 73 dx with MDS in Jan-05. He has RAEB and extra Chromosome 8. His RAeb-2 with refratory anemia.

Fran

[g-masews]

Your husbands counts don’t seem too bad, aside from the blast count. My husband’s counts run about wbc 1.5 yet he is never sick, Hemoglobin 12.2 but not too tired, and platelets 70, but no problems there. So it kind of depends on how your husband feels as to whether the dr. wants to treat him. When my husband was first diagnosed, I was very annoyed that the dr. didn’t prescribe “something”. Now I’ve come to realize that,as long as he feels fine, no treatment is the best. There will be time for drugs later, I fear. Your husband’s age precludes him from a BMT (except you might ask the dr. about a mini-transplant; they have raised the age limit considerably). But again, if he is doing well, enjoy. The trisomy 8 can be an issue, but there isn’t anything you can do for it. Might ask dr. about Vidaza.

[CarolineG]

Fran,

My Dad who is now 79 years old was diagnosed with CMML late last summer. Before that he had MDS for 3 1/2 years. He had a blood test done and went to visit his Oncologist once every 3 months for that entire time. About half way through the 3 1/2 years, he was put on Vitamin B6. That was the only treatment he got. The doctor said that he thought it would be best to take a Wait and See approach. Dad lived a very normal life. Very slowly he became tired but not really noticeably until last summer when the disease was changing into CMML. I think that the best thing you can do is to make sure that Jim has a strong immune system. Dad ate well, slept well and often and he took his vitamins. There are people who have MDS for many years and it doesn’t develop any further.

I don’t know anything about RAEB or Chromosome abnormalities so maybe in Jim’s case they will have to do something sooner. I’m sorry that I can’t be of any help.

Caroline

[franm]

Dear Caroline:Thank you for your concern and good luck with your dad. Jim’s Oncologist put him on liquid B-12 drops as well as Iron and Folic Acid. Right now we are just living are life to the fullest.

Since Jim has a bad heart, he had triple by-pass surgery 2 years agao and now he needs a new heart…hahahah. At 73 they wont do much. So it is just like I said, we do things that make us happy…if it doesn’t cost much. Since his medical bills will kill us with cost of everything. I am not in the greatest health either. I am 71 and last year I had a passmaker put in.

I just hope that we both live without pain for a long time.

Please pray for us and I will pray for you dad.

Fran

[Neil]

Hi Fran,
His counts look pretty good!
At this point it seems his only threat is his blasts. Do they plan to try to lower them? Or just monitor them?
If they start to increase he could have some problems.
If they stay where they are he would be very fortunate.
Most attempts to lower them could very well have side effects that would make him feel rotten.
Think his oncs advice to sit tight and watch his counts is the best move at this time. Just don’t want his blasts to get out of control.
Might ask his doc how she feels about the future and how to best approach it.

[shirlsgirl]

Hi Fran,

I’ll try this again…had problems responding to your post today, I got a ‘software error’…

I found a very interesting article about spontaneous remission, and although rare it IS possible…I had no idea. Well, it’s probably wishful thinking on my part but, I guess you never know..

http://scholar.google.com/url?sa=U&q=http://www.haematologica.org/full/pdf/2001_12/861277.pdf

Sending positive thoughts and prayers to you and Jim.

take care,

Jody

[franm]

Hi Shirlsgirl:

Thanks for the insight. His Onc. wants to do another BMT in April, so I guess we will just sit tight until she gets the results from the BMT.

I think that MDS Foundation was not working this morning. I received a bad message also. Couldn’t get into the system.

Again, your positive thoughts and prayers are so important.

Fran

[franm]

Well, I will try again. Jim said that the Onc. told him that he has 1% blast in his blood. I have no idea what that means. Can anyone help me.

Thanks
Fran

[eve]

1% blasts in the blood is excellent – i don’t think there is much concern until the blasts go over 5%

good luck
eve

[franm]

Hi Eve:

I think you misunderstood me. Jim has 10% blast in his Bone Marrow and 1% in his blood with abnormal chromosome 8. Jim aslo has a bad heart and is Diabetic. So all those things are just added to his MDS.

The Oncologist will take another BMB in April I think to see what his bone marrow is doing now. The last test was taken in Augus/05.

Anyway, that is where we are at this time.

Fran

[eve]

oops sorry i misunderstood your post

eve

[g-masews]

actually Eve is right. There are generally some blasts in the marrow (under 5% is best) but that is where they are suppose to stay. It’s when they escape into the blood stream that they become a problem. And again, not much concern until they go over 5%. Blasts are just immature cells that should die off in the marrow, but if they get into the blood stream, they cause problems. Being diabetic and having heart issues are one set of problems, but a low blast count, and “reasonably” good counts are in your husbands favor as far as MDS is concerned. A wait-and-see approach is still probably best, especially because of his age and other difficulties. Hang in there.

[franm]

Hi g-masews:

Thank you for your encouragement regarding my husbnad. He seems to feel pretty good now. His next blood test will be on the 15th of March and then he see’s the Onc. on the 22nd. We are taking one day at a time and as long as he feels ok, we are doing nothing. I just hope that when he has the bone marrow bioposy in April that his blasts doesn’t go up.

We will hand in there for now.

Fran

[franm]

Hi again:

It seems that all Jim wants to do now is sleep. I am getting pretty worried that his anemic condition is getting worst.

My daughter keeps asking why the Oncologist hasn’t started him on anything yet. She looked up MDS and she said that all the information said he should be on some kind of Chemo. But so far it has been over 1 year since he was told that he had MDS.

Any other information would help.

Thanks to you all for caring.

Fran

[lynette]

Hi Fran,
I saw that Jim’s Hgb is 12. Is he on Procrit? It might help the fatigue/anemia. I’m not sure if this is a problem for you, but Procrit is covered by Medicare if given in an MD’s office.
My Mom felt great when she was on it.
Lynette

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