10 replies to this topic

[CallMeLucky]

So I haven't been around too much lately.  I got a new job and I am quite busy.  I feel blessed that I can take it on, I know a big part of that is the switch to Sprycel, I don't think I could have done it on Gleevec (maybe I could have but not too sure).  I was terrified to switch jobs, insurance challenges and all.  I have been very fortunate and so far things have worked out.  Got my Rx filled with no issues and my Dr is on my new insurance.

Went to see Dr about a week or two ago.  Hadn't seen him in 2 mo.  Last time PCR was .0035 (approx 4+ log reduction) while taking 70mg of Sprycel.  I was still having side effect issues with chest pain, but overall I was feeling ok.  I asked him at that time if there was any reason medically why I should not switch jobs and he said "you are in stable MMR, there is no reason why I would tell you not to do it, just make sure your insurance is in order".  During the last two months I figured out something quite remarkable with regard to my side effects.  While my primary complaint on Sprycel has been chest pain, it has long been assumed this was GI related since they couldn't find anything wrong with my heart or lungs (thankfully).  I discovered that Sprycel has lactose in it.  I am allergic to milk.  My allergy isn't severe so I would often cheat and have cheese or an ice cream cone but I tried to moderate it.  I tried taking Lactaid with my Sprycel and my side effects subsided.  I wasn't crazy about this approach in case the Lactaid interfered with Sprycel but Dr said it was ok.  After about 2 weeks it stopped working so I decided to cut dairy out of my diet completely (not too hard because my son is also allergic and now he feels like we are in it together).  For the most part all of my discomfort is gone.  Anytime I get discomfort in my chest I can trace it back to something I eat.  So through diet I have eliminated the issue.  I still have a few other things, some muscle soreness and some minor skin rash but overall not too bad.

My latest PCR is now .0057.  This is basically the same as last reading, slight uptick, but typical variability in the test.  I asked Dr if we should increase dose and he said no.  He said "you are stable and where you are supposed to be.  For the first time in 3 years you feel well.  Why should we take a chance just to get below detection?"

I told him I will see him in three months and we can continue the conversation then.  If it still doesn't go to 0, then maybe I will push to go to 80 and see how I tolerate.  For now I am just going to focus on my life, my new job, and my family and try not to stress about it.

I hope everyone is doing well I have not forgotten any of you, I will check in from time to time.

Warm regards

Lucky...

[Ray99]

Lucky,

   Very glad to hear that you are doing very well.  Best of luck to your new job.

[Pin]

Hey Lucky, nice to hear from you That's great that you are handling your new job so well and I'm really glad to hear that your side effects are not too bad, and that you actually feel well! Really that's great news - it's always good to hear the success stories from switching medications. I am experiencing so many side effects from Gleevec but it's hard to know if things could be better so for now, I will stay.

Cheers, Pin.

[hannibellemo]

Great news, Lucky, and good detective work on your part! Do drop in now and then and catch us up.

Pat

[scuba]

Gary - Great to read your update. You have solved a big problem and have your quality of life back. I asked Dr. Cortes some time ago what the sensitivity is in PCR testing. He told me anything below 0.01 is meaningless. I asked why do they report below 0.01 and he replied that their isn't a 'true' zero and that some number usually shows up below that. Some labs will report undetected and some won't for the exact same "numerical" result. He went on that once a patient falls below 0.01 and stays there for repeated tests they are in stable MMR. They use CMR if it is below 0.01 regardless the third decimal place number.

We have to remember that values below 0.01 are very very low residual disease if it's disease at all. The only way to know for sure is to stop taking the TKI and test if the numbers go up. If they don't and the result stays the same a person may have achieved management of the disease (whether it is called a cure or no cure). There are many patients who have stopped taking their TKI who have residual disease as measured by PCR (PCR < 0.01, but greater than zero) but have had no progression - so they continue off drug, but monitored.

Like you, however, I do want to see the report come back "undetectable". I have since learned that they may write the word undetectable on the report even if the actual number is something like 0.001 or 0.004. Nevertheless, I am trying to get to "undetectable" by upping my dose from 20mg Sprycel to 40mg Sprycel. If my test result comes back little changed (and detectable), I will lower my dose back down to 20mg. and consider this my maintenance dose. I may even consider stopping Sprycel for six weeks and see what happens? To test if the PCR number goes up significantly (more than a log) or stays the same (within one half log).

Chances are you could actually lower your Sprycel dose and still get the same response you have now. It could even go undetectable on the lower dose.

One additional comment - Dr. Cortes did mention that he has had several patients that were stable MMR and after several years their residual PCR numbers dropped below detection with no treatment change. He believes this is the Leukemic stem cell dying out. There is emerging evidence that time is an important factor in treating CML. And that a lifetime of drug taking may not be necessary at all. But like Trey and Susan, how many are willing to test that by not taking their drug?

The good news is that CML is a slow disease (when Blasts are not an issue). So, in my view, experimenting with dose, which I have been doing, can be done safely. Recall that I even went off Sprycel for 3 months with no change in my CML at all.

Good to read your update.

Michael

[simone4]

Michael, you are just full of info.  My hem/onc always listens carefully when I repeat anything

Dr.Cortes might say to you.  Interesting about what he says about PCR's and I will copy this

info, so in the future I can remain calm, although my increases have been almost 2logs at

times and then "undectable" three months later.   It is a "crap shoot" on many levels, right?

Thanks for sharing. 

Simone

[simone4]

Gary, good luck on your new job.  We have missed you here.  You are always there to

offer the most sane advise and help.  You are at a good place now, so enjoy your

kids and your life.  The worst is over.

Simone

[scuba]

Simone - Dr. Cortes is a highly respected researcher in the field. He has seen so much, contributed to the rules many now follow and is generally very much at ease in how he looks at CML. He does not believe in "cure" as such. He sees CML as a very manageable disease. A lot of his efforts at his Clinic are in quality of life issues, side affects and managing response. He does feel that prescribed dose levels are too high (in general for the new TKI's especially) to maintain a great response. It's the slope of the curve that's important. If a trend can be set downward, then what dose is necessary to achieve it. The lower dose the better. He was the one who put me on 20mg Sprycel. He said, "let's see what that does". And to my surprise, my levels dropped. Perhaps not as fast as a higher dose would have achieved, but I was fighting myelosuppression. Only on my insistence did he agree to let me increase my dose to 40mg. He wanted me to increase my magnesium intake as well and to note any side affects whatsoever. I fully expect to go back to 20mg. as a maintenance dose.

In contrast with my the first Oncologist I met who diagnosed my CML, Dr. Cortes is very comfortable with my experimenting. Within bounds. But his bounds are very large. My first Oncologist only wanted to follow the guidelines. And have me take STIM shots, and max dose and all that to deal with myelosuppression. Dr. Cortes was comfortable with me stopping the drug altogether for months in order to understand the nature of my CML behavior and settle on a treatment.

If I were in Gary's shoes, I would experiment on dropping my dose from 70mg to 50mg and see what the response does. If the response stays the same, I would drop again from 50 to 40 and test again. if the response goes up (significantly), I would revert upward on the dose. I felt absotely normal on 20mg Sprycel. It was as if I was not taking anything at all. At 40mg. I do feel some 'heartbeat' intensity from time to time (at night only), but that has lessened. The Magnesium seems to correlate with resolving that issue. But 40mg. is definitely noticeable by me. 20mg is not.

(An additional comment - I do take a lot of daily Curcumin (8 grams). It could be augmenting the effect of my relatively low Sprycel dose. We don't really know. And I am not willing to stop taking Curcumin to find out. It turns out the Curcumin has helped my Arthritis and skin. Unlike Sprycel which is toxic to the body (Tyrosine and Src Kinases are not all bad), Curcumin is good for you. So I want to stop taking Sprycel. And I will always take Curcumin. When I ask Dr. Cortes about Curcumin, he has no opinion. He's not for it or against my taking it. When I ask if he feels it could be helping me (i.e. augmenting the Sprycel effect), he says, "possibly". When I ask could it be doing nothing he says, "that's possible too". He's very easy going and very sure of himself.)

[janne]

Lucky,

Congratulations on feeling better. Am glad you are in that place now.

Scuba,

Thanks again for sharing regarding Dr. Cortes input. Again, we feel like we just had a visit at M.D. Anderson without the plane trip. Keep up the good reports.

[HeatherZ]

Glad to hear you are feeling better, Lucky.  I just left the doctor and am making the switch to Sprycel.  Not sure if you remember me (cause I haven't been on for a while) but we are the same age and were diagnosed within weeks of each other.  I didn't realize you had switched to Sprycel.  It is encouraging to hear you feel so much better off the Gleevec.  I am looking forward to a reduction in side effects too.

[LivingWellWithCML]

Lucky - this is really good news.  I am very happy for you!  Hearing that you're in a good place and can focus on family, your new job, and life in general -- well, that's what we all hope for when given the opportunity to continue life on a TKI.  Always appreciate you sharing your journey with us .........