Going with Dacogen for AML…

[Bluyz1966]

Hello all. My Mom has decided to not do the chemotherapy for her AML as they only gave her a 10-15% chance of response and a 20% chance the therapy would kill her because of her health. She has decided to take the docs up on the Dacogen route. What I would like to know is will AML respond to Dacogen, or is this just to prolong the further advancement of the AML? I am basically looking for input from those that have actually experienced it. If it does not respond to the Dacogen, how long is it possible to survive AML? They say her MDS was from the chemo therapy she received for breast cancer 8 years ago. Something else for me to worry about as I had the same chemo for Breast cancer 1.5 years ago.

Thanks for all the kindness here.

[jaxem]

linda
your mom is about the same age as my wife who contracted mds/aml from adriamycin given about 8 years ago also following breast cancer surgery. this is called secondary cancer. mds becomes aml when the blast count exceeds 20%. my wife was at 18% blasts, had 3 rounds of vidaza and 5 rounds of dacogen. her blast count reduced to 2% after the 3rd dacogen round. she has been lucky & has had no side effects from vidaza or dacogen. both drugs are similar and are called demethylating drugs. i wish i could say that all patients respond like my wife and have no side effects from these drugs but i can’t after reading what other forum members have stated. there have been some interesting trials that have shown good results when an HDAC inhibitor is added to the demthylating drugs. I’d recommend your asking your hematologist about this. your hematologist is better prepared to give you a term of living with aml based upon your mother’s overall health. regarding yourself, it is supposed to be a rare occurrence as most people who have had the chemo are ok and because your mother has it does not mean that you will get it.

[Russ P.]

Linda, I doubt the hemo/oncs could predict how your mom will respond as each case is different.
I was on Dacogen when my BM blasts went up to 30% and the dx was AML. My doc is going to try me on Dacogen again after my clinical trial of Vidaza + PXD-101 showed increased absolute blasts and increased WBCs. The trial was over 9 months and I felt it had slowed the AML progression. I don’t expect a cure, except for a miracle, but am hoping for a good quality of life in the days that the Good Lord provides me.
Blessings,
Russ

[626eer]

My Dad is 61 and is in good health otherwise. He is choosing the chemotherapy route. The hemo/oncol locally said he would stand a better chance at remission with chemo, but Vidaza or Dacogen might reduce the blasts to a maintainable level. Like Russ says, everyone is different with this. God bless and best of luck to you and your Mom.

[jaxem]

russ
good hearing from you again and i’m glad to hear you’re doing well. good luck with your treatment.

626eer
my wife went through a chemo regimen at age 66 (MEC) which almost did her in & only got her to 8% from 18% but like you say, everyone is different. it’s tough on older patients. i wish your dad all the luck in the world that he gets into remission.

[Mary4Mike]

Hello Linda – Bluyz1966

I was reading through past posts and wondered how your mom was doing on the Dacogen. Has she finished the first round of treatment and has she experienced any side effects yet? I am wondering because my husband will most likely begin Dacogen the first part of December.

Can you give us an update?

[Bluyz1966]

Hi Mary. Well, I was going to post about Mom and ask about others side effects as well. She has finished her first round and has had no side effects aside from bone pain. The bone pain did not start until 3 days after her first round. If having extra energy is a side effect of the Dacogen, then she had that too. I almost questioned if she was getting the “real stuff” because she had nothing to mention. She took her anti-nausea meds religiously as all should, I think that helped her a lot. Best wishes to you and your husband. Where in Michigan are you?

Linda

[Russ P.]

There was an interesting part of the PBS Nova
program this week, “Ghost in Your Genes”. Go to wwww.pbs.org and in this Nova episode see the article by Dr. Issa on Epigenetic Therapy. He is claiming remission on 50% of the 100 patients in his trial. (Dr. Issa is at MD Anderson in Houston.)
I did fine on my 1st 4 days of dacogen this week
will finish it tomorrow. My only side effect is constipation which I handle with diet and stool softener. I had a premed of antinausea medicine and a steroid. The steroid gave me a nice boost of energy. My WBC was high from my AML and the dacogen should lower it. My concern is I started with low platelets (30) and a drop here would be bad.
Russ

[Leonard MD]

Hi All, this is my first post. I am a 70 yo surgeon who had a Non-hodgkins lymphoma when I was 37. Treated with total nodal radiation after a splenectomy I did well for the next 30 years. In 2004 developed a mysterious lung condition dx Lymphocytic interstitial pneumonitis. Treated with chemotherapy for six months and then developed severe secondary MDS. RBCs, WBCs Platelets all down. required aranesp, neupogen, and RBC transfusions to maintain my blood counts. BMB showed 20% blasts and multiple chromosomal abnormalities. Started on dacogen in May and after six cycles had another BMB and everything has returned to normal! I tolerated the treatments well. Had fearsome constipation and nadired requiring some platelet trans and neupogen. I fell well and now that the six cycles are over, now what? Differing opinions as to whether I should continue on the dacogen or stop or do it on a reduced dose. Anyone out there want to share their experience with me?

[jaxem]

Dr. Leonard
sounds like yours is secondary cancer as with my wife. dacogen is not a cure and who knows if and/or when it will stop working or the blasts will come back. what is normal? any thoughts about getting a transplant? my wife’s blast level got down to 2% after the 3rd round of dacogen but recently had a biopsy after 6 rounds and it’s at 8%. could it be meds, bad test ??? you can’t keep taking biopsies. it would be nice if you could have a port or pic into your marrow.

[maueenh]

Leonard,

As you state there are lots of differing opinions on the “next step”. My father did very well on Vidaza until we started to stretch out the treatments. It may have been a coincidence but prior to the change he was doing great. His doctor had recommended staying on treatment indefinitely but was open to stretching out the treatments. His experience had been that patients that stopped treatment eventually relapsed and were unable to regain the previous response levels.
It’s wonderful that you responded to the Dacogen and are feeling well.

Maureen

[Leonard MD]

Hi Jack and Maureen, thanks for the response. Maureen, what exactly happened to your father when he started to stretch out the treatments. Was he at half dose? How long was the stretch? They dont think a trplant appropriate. Best Leonard

[maueenh]

Leonard,

My dad followed a one week on three weeks off protocol from June 2006 through January 2007. Beginning in February he went to 7 days on(not including weekends) and four weeks off. By April his counts were below normal and the Vidaza stopped working. As I said before it may have had nothing to do with the timing but if I had to do it over again I would have stayed with the original protocol. Another issue I have wondered about is the use of neupogen. Originally they gave my father neupogen but when his wbc fell this past spring they elected not to give him neupogen. His doctor felt that neupogen can increase both the good and bad cells. In retrospect, I think we would have been better off using it but it is something you may want to research.

Maureen

[jas174]

Dr. Leonard, My husband was diagnosed in Sept. 2006 with MDS. He had CHOP in the past for NHL, so I guess the MDS was secondary. Now he has progressed to RAEBII and is not doing well. In Sept. 06, he started Vidaza and had a response in one week! A few weeks later, his counts were low normal and it worked great until after the 7th round, the treatments were spaced out from every 4 wks. to every 6 wks. After 2 rounds, the Vidaza stopped working. Like Maureens Dad, all was well with the 4 week dosing, soon after going longer, it quit working altogether. Since, then he has had Dacogen, danazol, procrit, currently on Revlimid 10 weeks now…no response to any of them. He may be transforming to leukemia according to Dr. He has had fevers for a week now, transfusion from yesterday shows NO rise in counts, Dr. says he is bleeding somewhere. More blood and antibiotics today and wait and watch. He is failing while waiting for a transplant. my heart breaks for him and I can’t help wonder, if he had kept on the 4 week schedule with the Vidaza, would it have continued to work? Won’t ever know. Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, RAEB2 + WAITING, WAITING.

[Leonard MD]

Thanks for your responses. For the moment I am going for cycle 8 of dacogen. Initially I was told to do 4-6. Because of my complete response to the drug, my docs have recommended more cycles but no one seems sure of exactly how many. I am tolerating it well and asked them not to give me the Aloxi as it is very constipating along with the dacogen. So far have not had any nausea. There are two docs in the literature who seem to have some extensive experience with treating MDS with dacogen and I am consulting with them to see what they have to say.

[Author]

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