Is MDS classified as cancer?

[Mary4Mike]

I would be interested in knowing if any of you have AFLAC cancer insurance and if it is reimbursing you for your MDS treatments. When we called AFLAC, they had to GOOGLE MDS! I am wondering how much of a battle this might be and if anyone out there has attempted this.

Thanks for any input.

Mary

[jaxem]

mary
i encourage you to google “american cancer society, mds” where their explanation will provide you with the answer to your question. i can’t believe cognizant AFLAC health insurance people don’t know what mds is? good luck to your husband in treating his disease.

[Mary4Mike]

Jack,

Thanks for the tip. I got my answer and I am slowly putting together my file for submitting a claim.

You haven’t given us an update for awhile on your wife’s progress. What treatment is she currently on. I was interested in the fact that she seemed to handle the Dacogen fairly well. Mike had a hard time with it and went off after only 2 cycles. We feel now that we were a bit premature in stopping because just prior to starting the Revlimid, his counts started to rebound to a level that was the best in a couple of years. Mike was the first patient that our doctor put on Dacogen. Most of his other patients (around 20) are doing Vidaza or Revlimid. After reading this forum (a God send), we feel he did not get the proper supportive care. It does not appear that the Revlimid is going to do the trick for Mike. He is on the third round and no improvements in counts (they ALL dropped after 1st round) and he has had two tx since being on it. He will do one more round and if nothing happens, he’ll go off. Then our doctor wants him to stay off any chemo treatment and see where his counts go. Have you ever heard of anyone else trying this? I know that Mike won’t let his counts get too low without tx because it is too hard to get back to functioning levels again. He doesn’t do well with HGB below 9. He is very interested in trying the Dacogen again, only this time with more supportive care ie. tx, Neulasta, and whatever else it takes.

I would be interested in hearing your take on all this AND let us know about how your wife is doing.

[panther]

my husband was on vidaza, couuunts were normal for 2 months. we were in fl. his doctor there said he had another pt with normal counts and he took him off in one month full blown aml in 2 months died. so he said he would just cut the treat ment to 3 in a cycle. did not work went to 4 did not work, went to 5 didn ot work, but although counts were low. went to pa9as we do each summer) his dr there gave him one round o 5 doses of vidaza. counts were so low he would not give another. had another bone marrow and he had advanced from raeb 1 to raeb 2. husbant had hemoglobin of 8.3. had his first two units of packed cells. sent us for consult in pgh. that dr sugessed dacogen. i had contacted the dr in fl and he advised larger does of vidaza or dacogen. dr in pa sugessed dacogen or palative. he chose dacogen. with 4 weeks of procrit. also another 2 units of rbcs.finished his first round of dacogen and tuesday has blood work. anxious to see what that will be. he was diagnosed feb of 2006

[jaxem]

mary
thanks for asking about my wife. she had been rejected by one hospital for the cord tx and we are awaiting another hospital’s response. i believe it was because of her age. as has been stated on this Forum, the only cure is a stem cell tx. there are only about 4-5 hospitals we feel confortable with that have done sufficient cord txs in the country so i’m hoping we get a break from one of them. my wife has blasts. to receive the delicate cord blood tx, her blast level must be under 5%, which it is, or it will never take. the dacogen will probably not eliminate all the defective blast cells but will reduce their %age relative to the good cells. unfortunately, the good die off with the bad and that’s why she needs blood txs to recoup. with dacogen, you need typically 6 rounds (one cycle/6 weeks, but at least 4 rounds if the drug is to do any good. she has had no adverse side effects from dacogen & is receiving it at home per a successful trial done at anderson in houston. she is going through her 5th round.

[Mary4Mike]

Jack

Just curious if your wife is still on Dacogen……would that be her 9th round this month? How many rounds has she done the valproic acid along with it? Did that make much of a difference in labs? How about side effects? Did your doc suggest this add on or did you after reading the MD Anderson site (very interesting I must say) How long will they keep a person on Dacogen?

I am asking a lot of questions because Mike is on Dacogen now. He just began cycle 2 on Monday. He really hit bottom, but seemed to rebound just before this second round.

Thanks and the best to your wife,

[jaxem]

mary
no. she’s had 6 rounds (one round=5 days @3 hours/day/6 weeks) of straight dacogen 20 mg/sq. meter body area. she’s into her 2nd round now of dacogen + valproic acid (one round=10 days @1 hour/day/38 days of 15 mg/sq. meter body area. doing the math, this protocol puts about 25% more dacogen than the 5 day protocol, and about 17% more dacogen than the 3 day (3 times/day) protocol. Plus there’s the max strength depakote )valproic acid) being added now. all this to get into remission (less than 5% blasts).

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