Chronic Myelogenous Leukemia (CML) Support Group

Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

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Long-term survivors with CML

I joined this group because I am wondering how many other long-term survivors are out there. Everything I read says "three to five years" and some longer since Gleevek came along. Not sure how to spell that--I didn't take it. I am one of the old-timers who took Interferon, I mean "injectable hell." But after three years, I went into remission! Had one short relapse about five years ago; negative BCR/ABLs since then, so I am fourteen years out at this point. The other CML vets I knew who took Interferon have died. I do know one person who is doing well on Gleev. The Interferon spiked my cholesterol and trigycerides to astronomical levels, and I had eight or ten attacks of pancreatitis in six months--that alone should have killed me, but noooo. Would really like to talk with another person who is just too darned stubborn to die.

Replies

deleted_user
deleted_user

Hello! I'm an old timer here, but my son - who was dx'd in 2008 is only 10. Gleevec has been administered since 2001, and now is considered the first treatment option. Studies are showing great success with Gleevec. Our cml doc is Dr. Brian Druker - the scientist who developed Gleevec. He has recently stated that the outlook for new cml patients who are successful on Gleevec can be extended out at least 30 or 40 years. (There are no studies - so no one really knows for sure.) It should be at least good to know that should you have a relapse (knock on wood), that you'll probably be put on Gleevec. There are also now newer medicines that seem to have even fewer side effects and may even work better. Those meds are out about 2 or 3 years. It's promising. Docs are now working on preventing resistance to the meds and even eradicating that pesky BCR/ABL mutant gene! More stem cell research is needed and we should all push our government officials to get off the stick on that issue. Well, good luck to you. I like to hear from those who have had success handling cml. For my boy, I'm hoping he outlives me and lives to see his own great grandchildren! Best wishes to you.
deleted_user
deleted_user

I've only been on Gleevec for 6 months now. I've spoken to people who are 10 years out on Gleevec. They're still thriving. I appreciated the information from tadlaw who stated that Dr. Drucker had said life can be extended out 30 to 40 years. I believe that!!! After 6 months on Gleevec, most of my side effects are gone and I've resumed normal life again. I have a little less energy than before, but that's ok--I'm alive! Great for you for surviving your treatment from hell!!!! I just had my first BCR/ABL test today and should get the results next week. Also for tadlaw, any thoughts on why a 10 year old got CML? My prayers are with you!
anjanarc
anjanarc

Hi, I am so glad you are doing well on Interferon. One of my friends on Interferon is 18 years out, he is from the US. He takes very low dose Interferon and has never taken Gleevec. He belongs to another support group. Most of my other friends who took Interferon have gone on to Gleevec and then some are doing well on Sprycel and Tasigna. Interferon did not give sustained remission to the majority and that is why Gleevec is first-line therapy now. But to some patients that Interferon did give remission, they are having sustained long-term remission and I hope that this holds true for Gleevec, too. My husbabd is 7 years out on Gleevec.

All the best to you and rest assured there are others on Interferon. If ever Interferon fails you, there is Gleevec and other drugs. So, I am sure you will live your normal lifespan. We just celebrated the 16 year CML anniversary of one of my friends from Canada. She was on Interferon for a long time, then on Gleevec and is now on Sprycel. She lives life with joy and hope.

With Best Wishes,
Anjana
wife of Royston
d/x Jan 2002
400mg Gleevec
PCR 4 log
deleted_user
deleted_user

On March 27th I will hit the 12 yr mark since I had an allogenic stem cell transplant for CML. I have been in remission since that time. It hasn't been an easy road but I wouldn't have changed it for anything. It made me a much stronger person. They didn't have Gleevec when I got sick but my oncologist said I wouldn't have necessarily been a great candidate for it anyway. I was in blast crisis when I was diagnosed & infections were taking over my body. My best chance was immediate treatment. I was very lucky to have a perfect donor found quickly...my brother.

I will admit one thing, as a CML survivor & an oncology nurse it is hard to see some patients that don't make it. But, with Gleevec the tables are turning & more & more are surviving longer & with much greater quality of life! Congrats to all of you out their battling & beating this disease....keep it up!!!
deleted_user
deleted_user

Can I just say THANK YOU to you CML tough guys? OMG, it's such a relief to read about how well you are doing and the promise that Gleevec holds. I'm starting on it Monday. It appears my CML was discovered early as I have no symptoms at all and by gawd, I would like to keep it that way! Your posts are helping to wipe the gloom away, THANK YOU!
deleted_user
deleted_user

Hello,I am picturelady61 but you can call me Jennifer.I have had cml for about 13 yearsI started on interferon it diden't work for me.I took Gleevec for a couple of years after awhile it diden't work as good and started having side effects.Now I am on Spyrcel I have had no side effects so far and it has worked better than gleevec.It gets really scary when the medicine quits working and worring if the next level will and if there is a next level from what I'm told I only have one more level of meds and it's hard on you.I am just a fighter,I also have fibromyalgia and some other problems with pain every day I make myself get out every day no matter how bad I feel.I just keep pushing back.If there is medication you can take I beg of you to take it.It will add time for you without what you went through on introferon.I hope to hear from you Jennifer
deleted_user
deleted_user

Hi, I am Mar55 not quit that old yet lol. I was diagnosed with cml on dec 15/08.What I have learned is cml has been researched more than any other type of Leukemia.Good news for cml patients.I was very fortunate to be asked to join a clinical case study. I was given Gleevec 400mg. the standered dose. I didn't care at the time what they gave me I just wanted to start a treatment.It's now a year later an I feel great my blood levels are all back in normal range. The Gleevec worked pretty quickly for me, I wasn't takeing any other meds, I think this also made a difference in how well the Gleevec worked for me.In the last year I have had 4 bone marrow biopsys after 3 no big deal any more and tons of blood work 12 vials per visit. I also had to keep a journal of every thing I took includeing Vitamins and also how I felt daily.No meds for the biopsy either. I hopeing the information they collect from me can help some on else. Mar55
deleted_user
deleted_user

It is so exciting to know you have done it for 14 year! My Dad has been on Gleevc for 3 years, and your story is a sure inspiration for him. Thanks for sharing.

Chian
deleted_user
deleted_user

Hi, Nellymo, calling all the other "survivors" Iam new to this game but not to the struggle to win the fight with CML. I was diagnosed with CML in 2005, I went on Glivec right from the start and for a time it was good, unfortunately the side effects were not, swelling, stomach upsets, sore joints etc etc. I realise that nobody is the same and you will all get different results. My consultant prescribed DASATINIB but I had a violent reaction to that. Finally, I have been on NILOTINIB for the past two years, swelling and stomach complaints disappeared nearly over night and the bloods were nearly back to normal and now I have been in full remission for over a year, hurrah!!
deleted_user
deleted_user

YOUR STORIES are HOPE for newly diagnosed people and thier families...Thank you all for sharing!
deleted_user
deleted_user

Hello. Glad you wrote this Im always wondering about "old timers" lol I was on Gleevec but relapsed from it after a year. Now I am on Tasigna. Im coming up on my 5 years July 10th. Im suuper nervous!! I do pretty good. I am still NOT in remission and at this point dont think I ever will be.
deleted_user
deleted_user

Hi Katiebabe,
Please keep the faith and you WILL get to the remission. It took me four years and I still have very slight traces of the phillies. I was at the consultant yesterday and he informed me that they had just about got CML beat, now if that is not something to rejoice about.....! I have never heard that from any of my doctors before and you better believe I have asked them.
So bye for now K and please keep the positive vibe
Love and peace NELLYMO
deleted_user
deleted_user

I'm probably late to the party, but I was diagnosed with CML back in 1987 at the age of 10. Went through a bone marrow transplant and have been in remission ever since. Now I am 34, an attorney with a fortune 100 company, and do tae kwon do and hospice volunteer work as my hobbies.
I never thought of myself as too stubborn to die. For a time survival was what made me special, now it's just something long in my past.
Susan1947
Susan1947

Hi: Your never late to the party when it comes to CML. God Bless you for your long time survival. You said 1987. I was diagnosed in 1998, and there were none of these TKI drugs that we have now. They have kept people alive and so much is known now about treatment. I think anything that gets posted to keep people positive can heal also.
I am at PCRU now since 2003, and this Christmas will be the start of year 14 for me. I was not a candidate for a BMT, and then weeks after I got into the clinical trial for the Gleevec.
May you continue to do well and live a long life.
Susan