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margieinindy
Sat Sep 8, 2007, 12:51 PM
My husband is a long term survivor of brain cancer. He had treatment with a drug called Temozolomide and now 7 years after completing chemo for the brain cancer he has MDS (RAEB-1 or 2, or t depending on who you ask). The wierd thing is that his blood counts never dropped while he was on Temodar. Do any of you know of people on Temodar ending up with MDS? I'm curious as much as anything I guess. Everyone seemed to believe that Temodar was a "very well tolerated" drug..but it seems the likely cause of his MDS. Brain tumors tend to recur..so my fear is he could have a bone marrow transplant, live through that and THEN the brain tumor could return. Anyway...

My husband just did a week of Vidaza. His whole body is bruised--two shots a day for 5 days and on saturday and sunday when he had to go to the hospital for treatment they gave him 3 shots each day. So he has 16 large bruises. He felt so bad from the treatment that he didn't go to the doc for a blood draw..when I managed to get him there two days late, they put him in the hospital to transfuse b/c his hemoglobin was at 5 (down from 9 before treatment). When you guys talk about blood counts being "dangerously low" what levels are you referring to? I'm still learning the lingo.

Margie

Linda
Sun Sep 9, 2007, 09:51 AM
9/9/07

Hi Margie,

Bob was on Vidaza the first year. He did feel bad too. But as the time went by the cycles were predictable, and he adjusted. He knew that chemo week and the week after were hard. He always stayed as active as possible to take advantage of the good weeks.

Why do they give 3 shots at the hospital?

Bob's WBC counts and platelets have always been the big problem. He is in the hospital right now for a fungul infection. His WBC was at 1.1 yesterday, and platelets at 11. I am not sure what are dangerous levels either. The Doc puts him in the hospital for infections only now.

He was put into the hospital at his first visit because his platelets were 15, WBC 1,and Neuts 0.2. He had to be diagnosed by BMB.

I am sorry for not being any help. You are both in our prayers, for this treatment to work.

margieinindy
Sun Sep 9, 2007, 02:51 PM
Thanks very much for the reply. I have lots of brain tumor friends I have met on line but I am feeling very lost in bone marrow world.

Mark's blasts are only at 6% but since he has been on chemo before, it seems like his disease will probably be harder to treat.

If you don't mind me asking, how old is your husband? If he hadn't already retired, has he been able to work since his diagnosis? Mark had worked off and on since his brain tumor diagnosis but I am not at all certain that he will work again.

How much did Bob's blast counts respond to Vidaza? and how long did it take to see results?

I'm sorry if I am bombarding you with questions you'd rather not thing about. If so, I understand.

Margie

Linda
Mon Sep 10, 2007, 06:18 PM
He retired from the USAF in 92 and has had his own business for the last 10 years or so. He hasn't worked since the diagnosis. His blasts wer at 19% Jan 06. He was unable to work due to weekness, and the 2 weeks out of the month being so rough.

Some people have been able to work right through the treatment though. I guess it depends on the amount of blasts and side effects.

Linda

Ruth Cuadra
Mon Sep 10, 2007, 09:49 PM
When you guys talk about blood counts being "dangerously low" what levels are you referring to?

Hi, Margie.

Welcome to Marrowforums. Sounds as if you have tons of medical/caregiver experiences you can share with us from your husband's history with brain cancer. I hope that, in return, we can help you learn the ropes of dealing with bone marrow disease.

The question of what constitutes "dangerously low" blood counts is hard to define because it's different for each person. For example, a hemoglobin (HGB) count below 6.0 is probably critical, but some people are critical at 7.0 and some people can live with 4.0. A platelet count below 10 is critical, but many people have bleeding problems with a count in the 20-30 range. Likewise, a low white blood count or neutophil count doesn't necessarily mean that a patient will get an infection--only that they are more likely to. Hospitals and doctors will have their own cutoffs for transfusions and other treatments. Patients have to get to know themselves too so they know the symptoms they experience when their counts get low.

Hope this helps. I'm sure you'll hear from other members on this topic.

Regards,
Ruth

Wayne O'Shana
Mon Sep 17, 2007, 02:46 AM
Hi Margie:

It is not unusual for pts to go through CA treatment and then later end up with a dx of MDS. Temodar is a cytotoxic agent that may cause very rare cases of MDS and secondary malignancies, including myeloid leukemiea.

www.rxlist.com/cgi/generic/temoz.htm

Go to page 5 first and then, if you are up to a lot of medicalese, try going through all seven pages. This will answer your first question, but I know there will always be more questions popping up when dealing with MDS.

Best wishes.

margieinindy
Tue Sep 18, 2007, 11:11 AM
Dear Wayne: Thanks very much for the link to the detailed information. I knew there was a potential link, but I haven't yet met anyone as unlucky as my husband to get this rare negative result. Not many people have lived as long as my husband has since the end of treatment with Temodar. I suspect that more people will end up with MDS as there are more long term survivors. Its a sad fact of long term survivorship I guess.


Margie