15 replies to this topic

[jamietoftum@hotmail.com]

Not sure how when I was gathering info from LLS upon diagnosis that I missed the discussion boards.  I sort of struggled along then found the CML group on facebook.  Pretty much been my support system and always willing to play "do you have this symptom?'  I also discovered the National CML Society.  Then stumbled into ACS and there is info there.  BUT never did I see a message board on the LLS? 

I used the LLS for all info about my illness, treatment, etc.. JUST didnt know there was a support thread..SURE could have used this a year ago... OH WELL..

I was diagnosed Dec 2011, with CML at the age of 40.  I started on Gleevec, then had issues that never seemed to be addressed.  My children's Pediatrician suggest a find a CML Specialist so I then switched to a Cancer Hospital rather than a general Onc.  MY doc is one of the top researchers in the US and currently doing trials on Ponatinib.  I have now exhausted 2 of 3 and after 9 months on Sprycel, have been deemed intolerant to TKI's by my doctor.  I have been reduced to 70mg and now on 50mg.  NOT sure what will happen next, but I keep plugging away and hoping that my next BCR/ABL shows little change.

HUGS to my Fellow CML Warriors!

[GerryL]

Welcome to the discussion board. There are quite a few people here who have been on the same road as you and a couple of them are in the Ponatnib trial. Jump in any time you want to ask a question or add something to one of the discussions.

[janne]

Possibly and hopefully you will be one of the patients who responds well to lower doses of TKIs, in your case, Sprycel and your BCR/ABL will not only NOT be higher but actually show some consistent response in the right direction.

"Scuba" has a great story with his 20 mg dose of Sprycel. Keep posting and you will find some amazing encouragement on this board !! Hopes, prayers and hugs for you. I personally believe as do others on this board, that lower doses of these drugs CAN be effective and there is some support out there for this, but seemingly not all doctors are encouraging their patients in that direction."Scuba" states that his doctor has great results with many patients on lower doses of Sprycel. Will let him tell you about it.  It also depends on your current level of response as well.  I hope you make progress in this direction at a dose that is tolerable for you. 

Glad you found us.

Janne

[scuba]

Hi Jamie - Janne mentioned my experience with Sprycel on low dose. I take only 20mg. Sprycel daily and I am in Major Molecular Remission (MMR: PCR < 0.06%) as of early February this year.

My advice to you is track your response at 50mg. Sprycel and if necessary you can certainly go lower like I did to 20mg. if side affects are an issue. Dr. Cortes is my Oncologist and he has had very good success with patients on 20mg. He prefers lower dose in order to minimize side affects so long as the response is acceptable. If you are not getting response at 50mg. then you need a different drug.

I do take Curcumin along with Sprycel every day. It is possible - though not proven - that Curcumin enhances the Sprycel response. I have been taking Curcumin for more than a year and Sprycel 20mg. since early May 2011.

Hope this is useful info for you - all the best,

Michael

[jamietoftum@hotmail.com]

Dr. Cortes would be my next stop    I actually have a friend who lives in TX and has invited me to come there.  I see Dr. Michael Deininger at Huntsman Cancer.  HE is one doing the Ponatinib trail.  I was actually reduced to 70, but while wating for the insurance approval, I took 50s..  6 days into the 70s I thought I was going to die, so I was told to stay on the 50s for now.  I do okay, just crappy side effects.  They are less on the 50s but still feel icky most of the time.  I just keep plugging away, hoping to get better.  NOW Im on Lisinopril because by blood pressure decided to go high and stay there.. 

[CathyS]

scuba

Do you know if the Curcumin works with Tasigna like it does with Sprycel.

Background;

I started with Sprycel the week I was diagnosed Aug 2011 my counts were coming down and most are in the normal range and I am in MMR. In January I started have some trouble breathing getting out of breath couldn't get a whole breath etc. it just kept getting worse so they ran a bunch of test and determined it is the Sprycel. I have been off all chemo for two weeks and I am back to normal breathing so my Onc wants me to start Tasigna this week.

I did purchased Curcumin and have just started taking it a couple of days ago. I told my Onc about they way you take along with Sprycel and I asked my Onc if I could just reduce my dose of Sprycel to help minimize the side effects but she said it wasn't the dose but the drug it's self that was causing the problem which is to bad because my counts were doing really well.

I will be taking two 200mg of Tasigna twice a day. (800mg total for the day)

Thanks for any information you can share

CathyS

[jamietoftum@hotmail.com]

Cathy, they wont put me on Tasigna and Ive exhausted both it and Gleevec...so HOPING the low dose of Sprycel keeps me in MMR.  There is also a link on Youtube from the ASH conference discussing the potential for patients in MMR to go off their TKI's.  Eventually our docs will put us in Clinical Trails and try to take us off of them.  SOME evidence is showing that once we are treated for a while with a TKI and have been in MMR, that we can go off of them and have the CML not return.  HOPING FOR THAT DAY!

[scuba]

Hi Cathy,

I do not know if Curcumin works with Tasigna. And we don't really know if Curcumin works with Sprycel except in a study involving Colon Cancer. I am betting that it does.

Personally, I would try a lower dose of Sprycel (since it was working very well for you) before switching to Tasigna and find out if dose matters with Pleural Effusion in your case. It is not correct that dose does not affect pleural effusion as your Oncologist told you. Lower dose have lower incidence of Pleural Effusion - especially when the dose is reduced to once per day from twice per day. A lower dose may work for you (continue CML response) and not cause lung issues. Also - there have been studies where patients were first taken off Sprycel to recover from Pleural Effusion, then put back on Sprycel (at same dose) without a recurrence of the Pleural Effusion. I would first go that route before changing drugs. 

I am on 20mg. Sprycel and in MMR. I take 4 grams Curcumin C3 (with Piperine) every day. I might add that Curcumin on its own is good for the lungs (improves function) as well as Arthritic inflammation.

[jamietoftum@hotmail.com]

I will have to try that...can you get it online?  ALSO not sure if you are on the CML page at Facebook, but there are a few on 20mgs who have the Pleural Effusion.

[scuba]

No surprise that Pleural Effusion can be caused by a small dose of Sprycel. My point above was that there is data that show that reducing the dose can lead to Pleural Effusion not returning once it has corrected (through dose interruption). It's certainly true it doesn't work for everyone - but, in my mind, it's worth a try.

Regarding Curcumin, you can get it on-line.

[CathyS]

scuba

Thanks for the info I have a question how do you get your Onc to agree with what you want to try or is this something you are just doing on your own (reducing Sprycel to 20gm). Because like I said she wants me to go with Tasigna.

Just asking

Cathy

[scuba]

Hi Cathy,

Reducing my dose to 20mg. was actually Dr. Cortes' suggestion - not mine. He originally prescribed 70mg.starting dose for me and after only one week at that dose, my cell counts plummeted putting me into severe myelosuppression. Dr. Cortes asked me to stop taking Sprycel until my counts recovered. I continued to take Curcumin, however, during that time on my own. Dr. Cortes knew that I was doing that and did not object. It took over 3 months before my white counts increased out of the "danger" zone. Normally count recovery occurs over one or two weeks of both normal and CML cells. Eventually my counts became high enough and Dr. Cortes re-started me on 20mg. He told me that I am very sensitive to Sprycel (myelosuppression response) and that he anticipated that 20mg. may very well work for me as it has for some of his other patients who had a similar response.

I would ask your Oncologist if you could first try a low dose of Sprycel first and see if that gives you continued CML response while at the same time avoiding return of the Pleural Effusion. She may be o.k. with that. If she isn't o.k. with it, you would either have to find a new doctor or follow her plan.

[pammartin]

Welcome, glad you found us

Pam

[jamietoftum@hotmail.com]

Thanks Pam.  In the beginning I was pretty much alone.  Then found the FB page and the NCMLS as well as support with friend on ACS too.  15 months into diagnosis and still fighting.  It sucks at times, but I keep plugging away.  Been off of work for 3 months, went back 2 3.25 hour days last week...back again tomorrow.

[NotJack?]

Hi Jamie,

There are a few of us who are doing so, not me, I was just dx in Aug.  But we are following Joel's journey :  http://community.lls...e/134873#134873

[jamietoftum@hotmail.com]

Its not been fun.  Totally hated Gleevec.  I did okay on Sprycel then started having other issues going on.  Finally deemed intolerant, lowering the doses and hoping for another option.  We have discussed transplant but since I am in Chronic Phase, its just a discussion for the "what if" when there are no options left.