I need some information

[franm]

Hi:

My husband was told 1 year ago that he has MDS. We went to the Mayo Clinic here in Phoenix where we live in December. The Onclogist there saw the lab works dated 11/14/05. It showed a Hemoglobin of 12.6, MCV 104, white blood cell count 3.7, ANC 1700. Platelet count 102,000. Also he had a 10% Blast in his bone marrow. Since we live so far from the Mayo Clinic, we went to another MD near our home. She has been doing blood test every month and so far she said he doesn’t need any treatment. I don’t know if we should trust this Onclogist or not. His last bT was done on 1/10/06. WBC: 3.5
RBC: 3.60
MCV: 102 MCH: 36.0: Platelets: 105 and Glucose, Serum: 115.

Should I worry or just continue with this Onclogist?

Please help me
Thanks
franm

[Neil]

Hi Fran,
His counts look pretty good for an MDS patient.
BUT— you mentioned a blast level of 10%. Is that still the case?
Did they tell you what his classification is?
The primary goal would be to keep his blasts from increasing and hopefully to lower them.
Any discussion on this option?

[franm]

Hi Neil:
Thanks for talking to me. My husband’s history. He is 73 years old. They found on routine blood work in early 2005 that his platelet and white blood cell count were low. Initial workup showed no specific etiology and he ultimately had a bone marrow aspirate and biopsy performed on 8/05/05. This demonstrated refratory anemia with excess blasts, with a blast percentage of 10%. Cytogenetics showed trisomy 8. He also had triple by-pass surgery 2 years ago as well as Type 2 diabetes.

[Neil]

Hi Fran,
RAEB and trisomy 8 are not to be taken lightly.
Would seriously think about a second opinion. The Univ of Arizona, Tucson has some docs experienced in treating MDS.
Its encouraging his counts have been stable. The concern is what to do if they start going down or more importantly if his blasts start going up. The docs should be considering what they will do to lower blasts and to keep them from getting to his peripheral blood. This may never happen, but they should be prepared and know what they will do rather than begin the process if it happens.
Another thought—He should see his internist on a regular basis. MDS can have a nasty effect on other organs. His basic health other than MDS should be maintained. Hopefully he is keeping his glucose under control. That is something he can do something about.

[franm]

I still need some help here. Does anyone have and idea’s on what my huband can do. He is sitting in Limbo now. The MD thinks he should wait for any treatment. In August of last year we saw 2 different Oncologist and both said that he should start Vidaza at that time. But then we saw another MD and she said his blood cells weren’t low enough for his to start. I am affraid that if he waits until he is really sick that the Vidaza won’t help at all.

Any thoughts on this matter.

Please help if you can with words of wisdom.

Thanks…Jim’s wife

[eve]

hi jim’s wife

my dad didn’t start vidaza (which was called 5-aza in the clinical trial he was in) until he became tx dependent, needing txs every 3-4 weeks

i really can’t tell you if starting it sooner would have made any difference, the only thing i can tell you is that the treatments really knock the hell out of my dad

you have to have a lot of faith in the doctor that is treating him – i think that my dad’s doctor is very well educated in treating mds and i have great confidence in his ability to choose what steps we have to take , so we let him steer the boat for us

good luck
eve

[Jim]

Franm,
Your husband’s situation sounds somewhat similar to mine BUT I didn’t have a high blast count or chromosone problems when I was first diagnosed. I was diagnosed with MDS RA 5/04 when my Hgb was in the 12 range. My blasts were only 1/2%. The doc said come back every 2 months. In the spring of ’05, HBG started dropping and the doc started Vidaza when it hit 10. Hope this helps.

Jim

[Charlie G]

Hi Franm;
Your husbands condition sounds exactly like mine. I was diagnosed in Sept. 05 with RAEB-2. My levels were wbc 2.9, hemo 11.9, p 63, blasts 10%. Now after 4 1/2 months my latest tests are wbc 3.1, hemo 11.9, p 80, blasts 10%. This is with no treatment of any kind. It is extremely difficult to decide how to proceed. We are considering BMT, but its difficult to take that risk when I am feeling fine and have no limitations on my daily life. It would be great if we only knew how this disease would progress, but it seems no one can predict it. For now I am just taking a wait and see attitude. Best of luck.

[patti]

Fran and Charlie,

I’m going to throw some other information in the mix here. I hope it will help. My MIL is 75. In Aug. 04 she was diagnosed MDS RAEB-t with an excess of 30% blasts. All three of her blood lines are severly effected and she is transfusion dependant. We tx every 4 weeks. So far, we have avoided platelets using the fresh pineapple and black sesame seeds. She gives herself neupogen shots twice weekly just to keep 4-500 ANC’s.

I think that both of you should seriously consider meeting with an integrative medicine naturapath. Ours works directly with moms doctor in coordinating her natural treatments with whatever other treatments mom’s doctor would want to do. She has elected not to do any chemo but the MDS is now severly affecting her other organs.

Mom has gone 17mos. using only a whole, natural diet (macrobiotic), using many supplements and using LOTS of probiotic. She is definately winding down to the end of this disease after 17mos but if you two really take care of yourselves with what you eat, drink lots of water, take supplements, etc., you can go quite awhile without doing any treatment. Mom has chosen not to do ANY chemo of any sort so she realizes when the natural no longer works that will be it for her. For you two though, if you’re considering chemo I would first approach natural to strengthen your bodies (Fran – your husband’s) and then if and when you choose some sort of chemo your bodies will be so much more able to deal with it. Or even a transplant, Charlie.

Age and current health are also a factor. The older we get, the harder our bodies take things. If you’re generally healthy and can keep yourself that way than waiting is probably best. But do be prepared for what kind of treatments you want to try when the time comes so that you don’t lose any time researching and reading. That is one thing we did long ago. We read up on everything that was available, covered it with the doctor and the naturapath and then made a decision back in the beginning so that we would know what to do if mom ever progresses to AML.

Hope this was of some help to you.

Patti

[gemloyear]

Patti, Isn’t 30% blasts considered AML ? My husbands periferal blasts are 16% and Dr. says its AML. So far only treatment is blood tx.
It appears that your mil is doing fairly well for her age and condition.We have always taken supplements and fresh foods but other factors enter into our health as well.Best wishes for your MIL.

[patti]

Hi Elle,

There is quite a bit of controversy over what % of blasts constitutes AML. We’ve had two docs look at mom and both have still considered it MDS. They said that unless she starts to exhibit symptoms of AML they will not consider it that. My take is, if she does have AML she sure has lived a long time with it and they’d better be asking how she’s done it! You’d think for as well as mom does/feels they’d want to know what she’s doing/taking. Her doc could careless. Doesn’t think anything natural is worth a thing. Oh well. Mom’s naturapath and her herbalist (who does iridology) both say mom has an incredibly strong constitution. So, you are right. Our underlying body differences matter too.

Take care.

Patti

[franm]

Hi all my friends: How long do we put our life on hold?

Jim found out that he had MDS, after a BMB that was done last August. He went to 3 different doc and they all told him to start Vidaza. The last one he went to was in November and she said that she didn’t want to start any treatment as yet because his bc isn’t bad enough. I listed his last bc several weeks ago. His next appointment with Oncologist is Feb. 20th. Will know more next month I hope. In the meantime I came down with a cold and he caught my cold now. It seems to be in his chest and that really worries me. But I guess there isn’t much I can do. Just hope a Pray that things get better .

I Pray for all of you and hope that everyone here get’s to be in remission.

Thank you again for your surrport and help. I will write to you again next month after he has his blood test again.

Thanks again people and good luck to you all.

Franm

[eve]

hi franm

a cold in a person without mds is not anything to get nervous about, but if your husband is not feeling well and starts to run even the slightest fever he should get to a doctor – things can get out of control very quickly for a person with mds

good luck

eve

[franm]

Thanks Eve:

I will keep an eye on him and hope that the cold doesn’t get any worst.

Good luck with your dad.

Franm

[franm]

Hi Eve:

It seems that his cold and cough is getting worst. He has no fever yet but he wants to sleep 5-6 hours a day and then all night. I put him in the spare bedroom with a humidfier going all day and night. He doesn’t want to eat or drink anything either. I won’t see a md, so I just leave him alone and hope for the best.

Thanks for your concern.

Franm

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