9 replies to this topic

[rcase13]

Nothing has been decided yet. I haven't even had my 3 month PCR/Fish test yet. But the doctor has mentioned knocking the CML out using Tasigna and then switching to Gleevec for the long haul. I have pretty advanced GERD and can't take my PPI with Tasigna. I have to restrict my diet severly to prevent severe acid attacks. At first it was really difficult and I had trouble maintaining weight. Now I think I can manage it with two 20mg Pepcids a day. The doctor has me taking the Pepcid two hours after I take the Tasigna. By the time I take the Tasigna the Pepcid has worn off and I have lots of acid! The Tasigna appears to be absorbing well. I responded well to Tasigna and my blood numbers return to normal or close to normal very quickly. The main side effects are the burning head and face.

Has anyone ever heard going backwards from a Tier2 to Gleevec? While it has been difficult I have adjusted to the Tasigna/Pepcid schedule and don't want to rock the boat. My main objective is killing the stupid cancer. My comfort can go to hell. My son is only 12 I want to hold my grandkids.

[CallMeLucky]

This is a newer idea as Gleevec is going to be generic very soon. From a cost perspective they are looking at a model where you knock down on stronger med and then maintain with less expensive. You can debate this many ways. Upside is lower cost but if side effects are worse or if response slips then you may need to go back. On other hand gleevec seems relatively safe over long haul. the newer TKI are stronger and although not common the significant side effect profile for the newer TKI are more dangerous when they occur. I would say focus on the now and just let Tasigna get your numbers down. If you get to the point where it makes sense to try something like that you can decide then. Not sure why your dr felt the need to bring this up now.

[garfonzo]

For what it's worth, i was taking PPIs for acid and GERD prior to my Dx. Turns out it was my swollen spleen from the cml that was pushing into my stomach and forcing the acid up. After starting Tasigna, my spleen returned to normal size and wolla! No more acid reflux.

[rcase13]

For what it's worth, i was taking PPIs for acid and GERD prior to my Dx. Turns out it was my swollen spleen from the cml that was pushing into my stomach and forcing the acid up. After starting Tasigna, my spleen returned to normal size and wolla! No more acid reflux.

Wow I wish it was that easy. I have GERD since I was 19. I was one of the first to try the then new PPIs. When the doc took me off the PPI (Prilosec) I almost immediately started having acid attacks and throwing up acid. I changed my diet and started taking Pepsid twice a day to control it. I basically eat salads and grilled chicken now. Anything else and I have an acid attack.But I am fine with this arrangement. In the end the main goal is to beat this cancer. I can endure just about anything.

[JPD]

Rcase - I take it you have ruled out gluten and/or dairy intolerance?  My 18 year old son is in the middle of a doctor ordered gluten-free and dairy-free 7 week "test" and his GERD has been almost nill.  Im pretty sure you've done it, but never hurts to ask

[rcase13]

Yeah I have ruled everything out. Been dealing with this for 26 years.

[Tori]

I started on Tasigna and after several months switched to Gleevec (due to significant hair loss on Tasigna - I'm a 35 year old and that was too much to bear for the long term if there were other options). I was initially concerned about the switch, but my doctor shared a similar point of view that has been discussed about starting with the stronger drugs to get the quick and deep response and then switching to gleevec for maintenance. He didn't have any concerns about switching between the two and it seems to be working out well so far ( I've been on gleevec for about 5 months).

[Pin]

Fascinating - This is an interesting approach, no reason not to try especially if you can take your regular acid meds with Gleevec.

[SandyG353]

Hi.

When discovered Gleevec was called the "miracle drug"  and saved the lives of many people who had CML.  I belonged to a group on yahoo and  learned of the experiments as new drugs came up and how the individuals did.  I believe that Tasigna is produced by Novartis as is Gleevec.  Looking at the drugs, the only one that would have worked for my daughter is Gleevec.  I am curious  as to why some oncologists chose to start their patients on Tasigna instead of Gleevec.  In the Yahoo CML2 group individuals were changed to Tasigna if they failed to reach remission.  Gleevec has been on the market for a long time and has shown to be effective and have side effects that are more tolerable than the other drugs that have  been prescribed such as Tasigna and Sprycel.  Fortunately,  for my daughter. Gleevec works.  She was in molecular remission within 6 months - tops.  Due to a heart condition , she would be unable to take Tasigna nor Sprycel.  I am happy that she has been doing well.  The only problem she has is above the norm eyebleed which lasts long and is painful. She will be taking a blood test to see how her body metabolizes the drug . After the test, her doseage might be reduced.

Sandy

[CallMeLucky]

The reason for starting on Tasigna is a bit of science, a bit of marketing, and a bit of guessing.

Gleevec is going generic so Novartis would prefer you take Tasigna. So they ran trials that showed Tasigna gets a deeper response faster than Gleevec. Some have proposed that means a better prognosis. No one really knows for sure it seems.

We are playing the long game, everyday we have normal blood counts we are ahead, the rest is hedging on how long you keep it going. Some think deeper early response will equal longer survival, not really sure.

I heard an interesting quote from a doctor recently, "people who don't try to live longer, live longer."