13 replies to this topic

[CallMeLucky]

So I have been working with my second opinion Dr through the transition to Sprycel.  While I feel much better than on Gleevec the Sprycel was causing chest pain and cough.  This Dr put me on 50mg temporarily to see how I felt.  So far so good, chest pain and cough are very minor now and in contrast to 100mg where I felt it all the time regardless of what I did or ate, I found that on 50mg I could trigger the side effects with certain foods, particularly salty foods.  I also got a suggestion on the board to not take my pill at bed time and instead I take it with dinner and that has helped a lot.  Old Dr wanted me at 100mg period.  New Dr said he gave it some thought, based on experience, some additional research, and consultation with colleagues and he feels he could live with me at 80mg long term but not 50mg.  He is bumping me up to 60mg and seeing how it goes over next few weeks.  I guess I can't argue with that.  If it gives me a problem he said to call and we would continue to "work on it" so at least he is flexible.

One thing that I was completely thrilled about is that the new Dr ran a PCR.  This is of course a different lab, which happens to be on IS and they use a different control gene.  He cautioned beforehand what I already knew that just because I was negative at the other lab it was very possible that I would not be negative at this lab.  To my surprise my PCR was once again negative.  This also comes on the heels of some irregular dosing (I had a two week break from Gleevec and was on again, off again with Sprycel at 100mg, sometimes taking every other day for a month or so).  He said these results show that I have a "nice deep response".  All of my other counts were perfectly normal as well.

So all in all very pleased.  I started working out again last week and aside from some expected muscle soreness, I feel pretty good.

Next week I go for a second opinion on the Prostatitis from an actual expert on that condition.  Hopefully I can get some good results there as well.

Hope everyone is doing well and feeling well........

[Susan61]

Hi Lucky:  That is great news.  You have gone through some really tough times along with the adjustment on TKI drugs.

I think your on your way now to get where you want to be.  I think Life is Starting to Be Kind to You, and you deserve it.

Congratulations on your good response!!!!!!

Hope you do well on your second opinion next week for the Prostatitis.

Susan

[mariebow]

I am glad for you.

[ChrisC]

Really great news! Congratulations on getting the help you need, and continuing with finding the dosage that works for you. Yay,

ChrisC

[Ray99]

Lucky,

   Great news.  It seems that Sprycel works for you really well.  You get to PCRU in a very short period of time.

Ray

[Marnie]

Congrates, Lucky

[nathaliece]

Congratulations, Lucky!  It is always good to hear good news from others on this journey!

[LivingWellWithCML]

Very good news indeed!  Good luck with the prostatitis thing...I had those types of nasty symtpoms a while ago, but I think it was caused by anxiety, cause it vanished as my anxiety subsided...

[TeddyB]

Great results, keep it up Lucky

Teddy

[scuba]

Gary wrote, "New Dr said he gave it some thought, based on experience, some additional research, and consultation with colleagues and he feels he could live with me at 80mg long term but not 50mg. "

You have been PCRU under Gleevec. You reached PCRU very quickly. You went off Gleevec for a while and on and off Sprycel during your transition and your PCR still came back "undetected" even with a new lab. Chances are your "residual" disease is way below any threshold from any lab. And you are on 50mg. Sprycel.

And you write that your doctors want to increase your dose to 80mg because they don't feel good that you are on 50mg. and test if you can tolerate with renewed chest issues and other side affects (potentially). This is nonsense.

I am on 20mg. Sprycel. TWENTY. And I have had a steady drop in PCR during this time and am very close to PCRU. I very much wanted to increase my dose to 40 and Dr. Cortes won't let me. He told me lower is better if lower works. Why would Dr. Cortes keep me at 20mg. when your doctors feel that 80, 'they could live with'. They can't live with you at 50?

My point in this rant is that this is not science. It's art. Doctors practicing their art need consensus and additional "reading" (which means they don't have the experience). Your doctor should be experimenting with the dosage going down - not up. He should keep you at 50mg. and test your PCR in 3 months and see where it is. It will likely be ZERO.

You are an excellent candidate to stop taking a TKI completely after two years of PCRU (e.g. ChrisC). Sorry for the rant.

[CallMeLucky]

You know I agree with a lot of what you are saying, but there is another side to this coin.  Low dosage is well and good until someone relapses - then it will be "why did you lower my dosage so much".  It is very possible that lowering the dosage will not result is resistance, but there is a chance it could.  Some people do not agree with that, but others do and I have been told by two experienced CML specialists that they experienced Gleevec resistance in patients who were on low dosage so there is reluctance to push it unless it is necessary (I asked and they said they had not seen it "yet" with Sprycel). 

There is a meaningful difference between our cases, you are on low dosage because you have to be, the drugs suppress your blood counts.  That is a very different reason than lowering dosage for "elective" reasons such as quality of life.  Now granted the chest issue may not be elective in the long run if it turns out to be something but I have seen 6 different doctors since starting Sprycel (2 CML specialists, 2 ER doctors, a Pulmonologist, and GP) all have suggested that the issue may be GI related.  To that end they are starting me on Protonix.  I questioned if that was safe given that we are told not to use proton pump inhibitors and Dr discussed that it may block some of the absorption but he feels we can get a good balance between the two (i.e. we add Protonix and bump up the Sprycel dose with a net effect of trying to maintain a certain amount of Sprycel in the system).  It is funny you mentioned art vs. science the Dr said the same thing.  He said I have a deep response so we have to tweak things to find a good balance.  My last Dr was unwilling to budge on dose at all, this one will be a little flexible, but for whatever the reason they are not comfortable going low dose and while Cortes is allowing it with you, I have to be careful not to assume that means he would do it with me.  I had discussed low dose with Mauro at one time and he was also not a fan of the idea, so it seems there is mixed feelings about this among the CML experts, and I'm betting Cortes would not be as willing to do it with me given my counts.

I may actually have a chance of stopping TKI down the road if I can maintain this deep response.  I want to try to pound the CML as hard as I can tolerate while balancing a good quality of life.  The reality is I don't think I tolerate Sprycel that well, I think I am very sensitive to these drugs and they all will come with their issues.  Interestingly this doctor has suggested a couple of times that he thinks I would be a great candidate for bosutinib.  He said bosutinib is a "cousin" drug to Sprycel and that it has the best side effect profile of all the TKI drugs.  He said if Sprycel does not work out he would want to try bosutinib.  Of course I will have to weigh the reward of a taking a drug that proposes to have low side effects with the risk of taking something that has not been on the market that long.  It would suck to find out a few years down the road that bosutinib causes something unintended.  So far with most TKI side effects it appears cessation remedies the issue, but there would certainly be some risk taking a drug with less history.  On the other hand it could be the drug that is right for me.  We'll just have to see what happens.  I bump up to 60mg and start the Protonix, we'll see what happens next.

Thanks for the feedback...and I don't consider it a rant, you are impassioned about this and that is good you take ownership of your treatment and that is very commendable.

[HeatherZ]

That is great to hear Lucky.

[jjg]

Hi Lucky, Great results!

Both you and Scuba make some good points. I guess most people here have taken a fair amount of ownership of our treatment which is great but sometimes there is not enough information to know which way to go - gut instinct, willingness to live with side effects V increased worry, etc are all part of it. I wish there was more info out there on low dosage, on long term effects, .... but over all we are amazingly lucky to have so much information for a relatively rare cancer.
My personal theory is that I think that low dosage is  reasonable below PCRU but not if you are hoping to stop treatment. Hitting PCRU leaves about a million bad cells out there so if you do want to stop treatment the TKIs still have a lot of work to do. In a way Scuba is in a nice position because he is on low dose but above PCRU so he knows that his numbers decrease at that dose. Most of us wouldn't try a low dose until we are PCRU and have no way to know what it is actually doing until there is an increase and probably a big increase if the PCRU was very deep. Mind you increasing above PCRU but below MMR is not necessarily a disaster if it was purely because of not enough drug rather than a nasty mutation. And a nasty mutation can always happen even on high dose below PCRU - just the odds are very very small. There is also a difference between a mutation that the current drug doesn't treat and progression. So while there is a lot to think about below PCRU we should probably spend more time enjoying life, not that very good at doing that (& I'm not PCRU... yet).

Hope the Protonix does a number on your chest problems.

[acb]

Glad to hear things are going better and that your PCR was great!! Awesome news!  Please let me know how you do on the Protonix. While I have symptoms similar to you (not as much coughing though, just chest pain and tightness/fullness triggered by foods as well), I have never seen a GI doctor about it. I really should do that. I did do a 4 day drug break (on my own, shh don't tell my doctor) and I didn't have any of the GI/chest symptoms and haven't had any since I resumed Sprycel. I am on 70 mg (switched from 100 mg to 70 mg last August - have been PCRU without any blips since October 2010). I had never had any type of  drug break since my third week on Sprycel in July 2010 (I had low platelets). I think the break did some good but obviously will not cure or eliminate the chest/GI problem entirely.

Hope things continue to improve for you!!