MDS survivors

[Mike Conlon]

I originally posted this message in local area with no responses. I'm used to rejection but I think this is a valid issue so am reposting here with the hope of some replies. Dx May 07, total remission Feb. 09. Since Dacogen will only be approved 3 years in May 09 there is little historical data available. I continue to recieve Dacogen on 8 wk cycles at Hillman Cancer Center in Pittsburgh(home of the Steelers). To my knowledge one local patient extended treatment to a 12 week cycle. This caused problems and he returned to 8 wk cycle and is ok. I'm interested in talking to others in remission or cured(if this is possible). I'd like to talk about treatment cycles, prognosis from their doctors, continuing side effects and anything else that might be importance at this stage of treatment.

[launch]

Mike,
I hope you find someone local to talk with, with your same condition, and some input concerning your meds, remission, etc. I wanted to respond so you didn't feel "rejected" :-) I appreciate your posts concerning my husband & others when we have questions. You are an inspiration with your progress!

Sincerely,
launch (Cindy)

[katherineann59]

Hi Mike,
According to my oncologist, I am in remission. However, he tells me that the only way I can maintain this is to continue on my current regimen of monthly Vidaza transfusions. He also cautions me that Vidaza is not a "cure" and warns me that history has shown that Vidaza will eventually lose its effectiveness and (unless something new is discovered) I will progress to a form of leukemia that is immune to medication and will eventually kill me. Not a happy thought and I am hoping that your situation is very different from mine in a positive way, that is. I hope you keep doing so well. There are lots of folks here with all kinds of diagnoses, treatments, and outcomes, so please don't feel as though my story applies to you. Hang in there. You're in my thoughts.
Kathy

[Mike Conlon]

Hi Katherineann59 I don't know a fraction of all the different types of MDS nor why certain treatments are given. I was dx in May, 07 immediately began 4 week cycles of Dacogen. Late 07 counts were good and blasts below 2%. In 2008 I went to 8 week cycle and was in total remission in Feb 09. Will continue on 8 wk cycle. I think at least at Hillman Cancer Center in Pittsburgh I am right up front in regards to success with Dacogen. I have not seen much info on any forum regarding results with Dacogen. One of the problems is that Dacogen will only be approved 3 yrs. in May 09. From what little I have seen there is not a lot of history with Dacogen outside the U.S. Anyone care to comment? For myself, at this point I would want a second opinion if I were in your place. Not criticizing your oncologist, but I would want someone else to take a look. I'll keep you in my prayers

[helen c.]

you are so young please get a second oppinion. ask about a transpllant u need a more optimestic dr.

[Mike Conlon]

Hi Kathy: In order to offer you some more alternative information I would be interested in what town/state you reside and what hospital you recieve your treatment. With that info I could possibly offer you an alternative to the dead end your current doctor appears to have reached. I agree, you are much too young to accept this current conclusion.

[Ruth Cuadra]

Hi, Kathy.

I am always in favor of getting a second (or even a third) opinion in cases of serious disease like MDS. That said, your doctor is correct to caution you that Vidaza is not a cure and that, if it helps as it seems to help you, you will likely have to stay on it to keep your MDS in remission. However, the doctor cannot say when or even if your MDS might progress to leukemia. Not all MDS patients transform to leukemia, but it is true that leukemia that comes from MDS is harder to treat than leukemia that arises on its own. Hearing dire predictions from someone in whom you've placed your trust is demoralizing and for that reason you might want to see what other doctors have to say about your situation.

Regards,
Ruth

[jnwink]

Ruth
I have a question. You wrote that not all patients with mds will transform into leukemia. What happens to those patients? do they have health effects from having low blood counts over time?
Jnwink

[Ruth Cuadra]

Hi, jnwink.

Only about 10% of MDS patients will transform to leukemia. For those who don't transform, their MDS may be stable for a long period or change relatively slowly. It's important for all MDS patients to remain in a doctor's care with regular checkups to look for changes in blood counts that might require treatment. From my own experience, I know that it is possible to become accustomed to living with low blood counts. At the time I was diagnosed with aplastic anemia, I was working full time, taking care of my family, and doing volunteer work with hemoglobin of 4.6! I didn't know I was tired until the doctor told me I was sick. So, while living with low counts can produce all sorts of problems it doesn't necessarily incapacitate you.

Hope this answers your question.

Regards,
Ruth

[jnwink]

Thanks Ruth
I am one of the people who are waiting and watching. My cancer center close to me is Roswell Park. I have had 2 bm at Roswell. I wanted to be sedated so I had to go to Roswell for the procedure. I am very happy that I didn't have to go through that pain. Roswell gave me a second opinion that my oncologist can keep track of me for now. My white count is low and everything else is in the normal range. When my counts start misbehaving I will be seen at Roswell. I am so happy to have found this web site. I have learned so much.
thanks for the info
jnwink

[Mike Conlon]

Hello everyone: I just finished my 16th 5 day cycle of Dacogen today(since May 1, 2007). My counts are great and I continue in total remission. Mid July I will have another bone marrow to confirm this. It's difficult to write this when so many of you are having difficulties of one type or another. The main reason is to give you hope to see someone with a positive result. It is difficult to share a treatment room with someone who will be there for 8 hours and I'm gone in 1 hr., and many times they have a very sad or uncertain story to share with me. Just because I'm doing well doesn't mean I'm complacent. I'm always looking for the future treatments which might give me a more secure future. For instance the different combination of drugs they have started testing. If I'm doing this well on Dacogen alone, what might the future hold with a combo of Dacogen and Vidaza or some other drugs. As always I will think of all of you in my prayers each day.

[helen c.]

so glad your are doing well this is an update on william my husband. he was dx. jan. 08 mds raeb1 intermediate stage he had 4 rounds of vidaza and 4 bmb and was in remission in sept.08 in june or july 08 he started having back pain and was referred to pain mangement dr. he had x-rays and cat scans and shots in back and hip still pain was sent for phy. therapy helped a little.in dec. he came out of remission and jan.09 was started on vidaza again he has had only 2 rounds of it due to low platletts and low red blood cells he has had 2 transfusions and 1 platlett infusion of course whites are down also. we are dealing with that but bak to the pain. it was just when he was standing but now for last 3 weeks its 24/7 it is in his hip and groin terrible pain he is on pain medsall the time now. he could deal with the mds if his leg would just get better he can barely walk he is going to be in wheelchair soon he goes back to cancer tomorrow and dr. im going to impress on her 1 more time about this leg i think he should seean orthopeadrtic dr. instead of just covering it up with pain meds. or is this a part of his condition. if it is tell us i know this is long but im desparate helen

[Mike Conlon]

Hi Helen: Sorry to hear about your husband's pain. Early in my treatment in '07 I couldn't sleep, hardly ate, lost 35 pounds. Complained endlessly at treatment, nothing done. On third trip to ER, Dr. in 10 seconds told me I was allergic to the anti-nausea medicine. End of problem. It seems the oncologists concentrate on the cancer and have issues with other problems. If you have a good pcp I would go to him and then he should be able to direct you to the proper doctor. If I would have done this in the first place I could have saved myself 3 months of agony. I now take nothing for granted, question everything and look everywhere for the answer. Good luck and I will pray for you.

[All4DK]

Hello All,

I've been on the LLS forums under this username but I'd like to introduce myself and join your conversation. My mother was dx with CMML in Oct '08. Since then we've met with doctors at NYP-Columbia, NYP-Cornell, MSKCC, and White Plains Hospital. She is currently cared for in a regional hospital and we usually consult with the NYC doc's every few months to make sure that everything is going well. She is being treated with Decitabine(Dacogen) having had the first 2 cycles over a three day intensive period and the other 5 over a five day period. She went from being extremely exhausted with loss of breathe to leaving me (25/m) in the dust. I cannot stop her. I would like to take her on a climbing trip, but I'd be worried she'd leave us all winded!!!

I am writing this because what we fear, is the day that Dacogen "ceases" to work. I haven't been able to read anything saying how long Dacogen could potentially work. The data regarding this disease is clouded in maybe's.

We've read statistics, which I believe are faulty, which give a 12-24 month timeframe to someone with CMML. This does not take into affect the fact that many with this disease find out very late in the game, some do not respond to the medicines, and some do not take treatment (older afflicted). I would love to talk to someone/anyone, who's taken Dacogen and thrived. I'd love to know there is hope out there, and to pass it onto my mom, who has the greatest spirit, but this disease is draining her. She is also a Breast Cancer survivor of 13 years.

Anyone who'd like to chat, by email or through this medium, I would love to speak with.

My email address is all4dk@yahoo.com. I look forward to hearing from you.

[Steve Kessler]

Hi Mike,
I take Vidaza & Revlimid. My blast count has declined from 11% to 3% in the last year. Studies have shown a good survival extension with Vidaza but nothing yet with Dacogen. Eisai, the maker of Dacogen, is planning a head to head clinical study of both drugs to verify whethor or not Dacogen extends life. they must be confident if they are starting the study.
Good luck with your remission.
Steve

[Donna E]

Hi all, I just want you all to keep the hope, faith and courage in fighting MDS. My father has been told that he is "living his miracle". I am a true believer that medicine can extend our lives and make our illnesses better but I have seen first hand what love can do . . . don't underestimate it's power. Hold onto those who you love, laugh when you can and pray . . . My father has been battling this illness for a very long time now . . . I don't believe that any doctor can tell us how long someone has because so much of it is in God's hands and so much of it is the power of love, prayer and healing thoughts. My Dad is my hero and all of you out there living with this illness are my heroes and I want you to know that I will live the rest of my life trying to educate people about this illness and will not rest until there is a cure.

God Bless you all . . . Donna

[Mike Conlon]

I'll try and answer some of the recent posts. I had labs yest and for the 20th consecutive month my numbers were right where they should be. Thur. I will have my 5th? BM. I am anxious to compare these results with Feb. when I was told I was in total remission. Back in Feb when I was told I was in total remission I was told by my oncologist that we were now in "uncharted waters." I have questioned and researched and I take this statement to mean that at least at Hillman Cancer Center in Pittsburgh I have breached a barrier of results and now am in an area where they don't have any existing experience beyond the results that I have presented. I hope this answers some questions and I will continue to answer the issues to the best of my ability based on MY personal experiences. I will continue to pray for all family members and patients.

[Mike Conlon]

For people keeping score I have been on Dacogen since May, 07, remission since '09. Today I found out I am no longer in remission. This is after 26 five day cycles of treatment. My choices are to drop from eight week cycles to four week cycles, not advised by my onc. The other choice is to enter the hospital for four weeks with intense treatment the first five days and the rest of the time being protected and allowing my counts to approach normal. This treatment will hopefully return me to remission and then back on Dacogen. Any thoughts or advice would be appreciated

[knstone]

Hi Mike,
Your results with Dacogen have been an encouragement to many.
Has your blast % increased? Any chromosome abnormalities?

It would seem that trying to increase the Dacogen dosage via a 4 week cycle could be tried before going to the more aggressive in hospital chemo. I've had success in reducing the blast% by increasing the dosage of Dacogen.

I attended the AA/MDS patient conf in Chicago this past weekend where Dr Steven Gore of Johns Hopkins discussed adding other drugs to Vidaza or Dacogen to improve the response in patients with MDS. One drug is vorinostat (Zolinza is the trade name), also has been called SAHA. A paper will be presented at the end of the year with the results of a study in combination with Vidaza. A search of vorinostat for MDS will show some studies.

Keep up you positive attitude.

[Debbie W]

My husband went through induction chemo when his blasts increased from the low, mid teens to 20%. Five weeks later his blasts were 4% and then 2% just before his transplant , who knows where they would have been a couple of weeks later, his counts were still climbing.

Best of luck with your decision, let us know what you decide.

Kind regards,
Debbie

[Danny Z]

Mike...I too am at Hillman on Dacogen (5th cycle) and would really like to talk with you if you're still on this forum?
thanks

[Neil Cuadra]

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