Improving Low Counts

[Fahmi Choudhury]

My father has been diagnosed with MDS August 2007. He was pretty ok for a while, while we tried to find a match in our immediate family. No match was found for a BMT and we are left with the agonizing waiting of finding an unrelated donor and trying supportive care and clinical trials.

He was on a clinical trial with Revlimid and Melphalan (combo) for about 2 weeks. He started feeling highly fatigued. In two weeks his neutrophill, WBC and platelet count went down drastically because of these drugs. Which is what the drug is supposed to do, from what i understand.

In addition, it has been about 10 days now that he has been in the hospital for possible infection. The doctors plan to keep him there since his neutrophill is currently at 0.6, WBC at 1.9, Platelet at 44. The doctors right now told us that they have not found any infection in any blood cultures or any other samples (multiple ones). They are still keeping in the hospital for more testing and hoping that his blood counts will go up. But it is going down. He keeps having this Rigors (severe shaking chill) only in the evening of every night. Initially, doctors thought it is because of an infection. Since they ruled it out, they are doing more testing now.

I just wanted to know if anyone had any similar experience. The doctors over here cannot tell if the rigor and the low counts are for MDS or for any other reason. Can anyone tell me if there are any ways to improve your blood counts. Doctors over here have said that if he is given any such drugs to boost his counts, it will be risky since it will go directly towards AML. Any suggestion will be greatly appreciated.

Sincerely…Fahmi

P.S: I think its an amazing forum to keep everyone updated. Great job.

[MNladyslipper]

I don’t know about the second drug, but Revlimid will drop all counts until it kicks in after 2.5 – 3 cycles (months). Then, it will help to stabilize red counts. My husband’s hgb hangs in the middle 8’s, neutrophils are usually between .2 – .4 and wbc around 1.4. The doctors don’t ever seem too concerned about the whites – they just say to be careful – practice good hand hygiene and we can always use antibiotics!

[Carruth]

My mil was hospitalized for fever and was trembling terribly. After many tests and cultures, they found staph in her blood and also pneumonia. With very strong antibiotics, she got better. The shaking comes with fever and weakness, we have noticed.

What about procrit shots for the rbc? Hope he is better soon.

Stacey Carruth

[jaxem]

fahmi
do you know the type mds he has? are there blasts? if there is no infection, it might just be a reaction of the body to the disease i.e. a leukemic fever. very often my wife will get fevers with no infection then have multiple drenching sweats during the night. my prayers that he finds a donor.

[Mary4Mike]

Fahmi,
My husband experienced the same symptoms of the nadir you are describing for your father. He went through this the first 3 cycles of Dacogen -extremely low counts, fever, and severe rigors. They cultured blood and urine each time, but never found infection. They pumped him with antibiotics (oral and IV) and Tylenol round the clock. The fever usually broke after 3 days and he was then sent home. We did find that if he took Ibuprophen instead of Tylenol, the rigors would cease within 15 to 20 minutes. I hope this helps.

Also, the lowered counts and rigors are from the chemo treatment. His counts should return to normal within 3 to 4 weeks when the stem cells in the bone marrow increase production and begin making new cells. (just in time for the next round of chemo)

Hang in there. Our prayers are with you and your father.

[Fahmi Choudhury]

Hello all,

Thank you all very much for your quick response. I am sorry i have not been able to keep up. My father was sent home yesterday after two weeks of hospital stay. They have found no infection in his blood cultures, and no other findings through ultrasound in his abdomen.

The last bone marrow biopsy revealed a blast of 0.15 and cytogenetics analysis revealed a monosomy 7. Although the blood counts continue to decrease, the doctors dont seem too worried.

Today at home he is feeling extremely fatigued and nausea. Is this because of his low blood counts? Is it possible that for Revlamid and melphalan (Chemo drug) combination, my father is having a delayed affect?

I understand some of you may be on revlamid for a while. Does the decrease in dose of revlimid help the next cycle that much? My father had 10 mg of revlamid per day. I know that it varies person to person in terms of how their body compensate with the side effect. I guess i wanted to know in general.

All my prayers are with all of you guys. Thanks.

[mario]

is your father still on Revlimid?
My dad is taking 10mg revlimid now and feels extremely fatigued too.
But doc said to not worry about it.

[Fahmi Choudhury]

Mario,

He’s not on revlimid for now. He was on for about two weeks and then doc suggested he shud stop becuz his counts are too low. But i think he’s having a delayed effect of that medicine right now.

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