36 replies to this topic

[TeddyB]

I was thinking the same thing, that a few days with ibuprofen shouldnt be any problem? But using it daily for weeks/months probably could have had an impact. Even so, after knowing that it can have a negative effect, i am going to avoid ibuprofen in the future, just to be 100% safe.

[cousineg]

Hi Susan,

                    Now, I didn't retreive the MMR and I stay on a plateau (between -log 2,3 an-log 2,8) since September 2011. My oncologist said may be that my high stress  had caused this relapse. I suggest my hematologist to increase the dose to 600mg of imatinib but he didn't recommand. Now, I feel very sick. May be, there is another disease.

''One common question is what to do with a patient in CCyR but not in MMR or still PCR-positive. Central to this question is what the goal of therapy is. We consider CCyR the gold standard for a good response. The reason is that achieving CCyR is associated with improved survival.¹'' ....

''These considerations guide our approach to the patient who has achieved CCyR but not MMR, or the patient who has lost MMR but remains in CCyR. In these instances, we do not recommend any change in therapy.''

Extract of How I treat newly diagnosed chronic phase CML

Bye, Gilles

[Tess]

I have had cml since 2006 and on 400 gleevec pcru.  I have only missed 2 doses, once when i had the 24 hour stomach flu and couldnt keep the pill down and another time when i had a colonoscopy and could not eat the day before.  There have been many times when I just did not feel like taking my pill figuring what harm would a missed day here and there do  - this post has given me a good poke to the ribs that i must  always take my meds.  Thats what i love about coming to this site and reading posts even though I dont contribute alot.  I have learned so much and keep learning.  Iam so thankful for this site.

[hannibellemo]

Giles,

I took 4-6 ibuprofen/day for months before I had my sinus surgery. Though we all process meds differently I would be seriously surprised to discover it was that tiny amount of NSAIDs that made you lose response.

Good luck!

Pat

[hannibellemo]

Rickpister,

No one else said anything about this but I wanted to address your statement, "Has anyone achieved  PCRu and then had this monster return?". I wanted to make sure you knew that PCRu does not mean you no longer have CML. There is no recognized remission in CML only deep response, so the CML is always there, it did not "go away".

I was concerned that that thought made you think it was safe to skip pills and as many others have pointed out - it isn't.

Good luck and keep that string tied around your finger to remember your daily pill!

Pat

[pamsouth]

RickPister,

You probably lost your response because you didn't taking enough of your TKI's.

However I have had a couple of doctors say, when you are taking a lot of med's and herbs no one really know how all those chemicals work together.  Even an excellent cardiologist told me that.

PamSouth

[cwade61]

"I attribute this to missing my meds about 20X or so over tha period of time."

I don't think the advice he's looking for is "WHY WOULD YOU MISS YOUR MEDS?!?!?"

[rickpister]

Thank you, Charlie.

[rickpister]

Thanks for your response, Pat. I am fully aware of that. Missing my meds was not because I thought I was cured. I know there is no cure. It was irresponsibility and laziness. That's on me. I just hope I can achieve PCRu again.

[hannibellemo]

You know, from what I've read that hasn't seemed to be a problem for most people. There are people in trials (and on their own with their docs) who have been PCRU for 2+ years and are off all meds to see if they are essentially cured. Most have not been successful, but most, not all, have been able to get back to PCRU when they restarted their TKIs. So I would think your chances are really good.

I was off Sprycel for 7 weeks due to PE, and lost MMR. I've been on 50mg for 3 months and will have my first PCR on Mon. to see how it's working.

Good luck to both of us!

Pat

[Headi]

Hi Pam, I am so interested in the results of your next PCR.  Have you had any return of the PEs on the 50 mg of Sprycel?  You may remember I had a similar problem as you.  I also was off meds for 7 weeks due to bi lateral PEs. I then switched to Tasigna at the end of May.  I was very hesitant to switch as I had achieved PCRu on Sprycel and had no other problems with side effects. I was encouraged by lots of folks to go ahead with Tasigna and have done very well side effect wise and cbc wise. Have not had a PCR yet. That is coming up this month. But I have developed a mysterious very itchy rash that looks and feels like mosquito bites. It is all over my torso with a scattered few on my arms & legs. It popped up over night. I started itching in the middle of the night and by morning I looked like all the mosquitos in the neighborhood had a banquet on me. At first I thought that's what happened, but there was not a mosquito to be found in the room and my husband who was right next to me had none. (I know I'm probably tastier, but give me a break) We were on vacation at a time share, so I immediately thought bed bugs. I never saw one, but examined the mattress looking for anything and still couldn't find a bug anywhere. Its 2 days later now and the bites are still there and still very itchy. If its due to Tasigna what do I do now? I would happily go back to Sprycel if a lower dose works and is not accompanied by PE's. So I really hope your little experiment with lower dose is working.  Thank you so much for sharing.

In the meantime I would like to know if anyone out there has heard of a Tasigna related rash? If so can it be treated? I don't think I can go to a lower dose of Tasigna as I'm already taking 1/2 usual dose. Will greatly appreciate any feedback.

Headi

[mariebow]

Headi, I was going to ask you when you went on vacation, did they have goose down feather pillows, or any real feather pillows, the reason I asked, is I bought a goose down feather pillow.  I started to itch all over with little itchy bumps, and it liked to have drove me crazy, I was using cortizone a lot and other creams, and I told my daughter who is a RN and she asked me have I changed anything on my bed and I said yes, my feather pillows.  She said that was it. and I took the pillow off and threw it away and she told me to washed everything on my bed.  The feather pillows had not been sanitized good.  I used peroxide on the bumps and kept on using cortizone, finally it stopped and the scratched bumps scabed up and healed. just wanted to tell you that.

[hannibellemo]

Hi, Headi,

There are several Pams on here, but I'm PaT. 

Knock wood, but I've felt pretty good, no return of PE symptoms and I've chosen not to have x-rays unless the symptoms do return. Tasigna is well known for rashes, according to most they go away after awhile. You may need to visit a dermatologist for relief, but if you search this site using key words 'Tasigna, rash', you'll prbably get a wealth of information.

Don't worry, I'll post my results as soon as I get them. Good luck with your rash.

Pat

[Headi]

I'm glad to hear that.  I agree with you about the xrays too. I may have to go back to Sprycel if this rash I have is due to the Tasigna.  Its not something I could tolerate because of how itchy it is.  Its encouraging to know that you've had no PE's since lowering your dose of Sprycel.

[Headi]

Mariebow, Thank you for sharing your experience with the feather pillows. The pillows we had were foam and the rash is different than you describe.  It is definitely crazy itchy, but the spots are not small, they are the size of a dime and there are none where I was touching the pillow. Thanks for the suggestion of the cortisone cream, it is definitely helpful.  Headi

[SheilaW]

rickpister,

Yes...I have had my CML show up again after almost 3 years of PCRU.  What the doctor told me is that we don't know how far below the 0.00 we actually are and sometimes we hover right below it.  As far as skipping your pills...I also had skipped mine...on purpose...last summer while on vacation in Hawaii.  We were there for a week and I took the pill once the whole trip.  You see, I can't drink anything or much while taking Gleevec cause it makes me sick so I skipped it so I could have MaiTais and whatever else I wanted without worrying about it.  I just wanted to feel "normal" and enjoy our vacation like everyone else and not feel deprived for that week.  It was wonderful!  A couple months later...after taking my PCR test...it showed up again.  I panic'd and confessed to the docter what I had done.  He said that I hadn't skipped enough to have made that much of a difference and that sometimes, like I said, it can show up again if our response was just below 0. We waited a month and took the test again and I was PRCU again..whew!  There are lots of people that stop to take a "break" for months and are okay...with your doctors approval.  What about the women who stop while pregnant and then go back to it and are fine?  It sounds like maybe you were skipping way to much and need to get back on track right away.  Now you know what you can't do.  I have not done that again except for once maybe six months later for two days and it didn't have any effect on my test results.  My doctor is also on the Bone Marrow Transplant board at Stanford Hospital and he said since Gleevec...he has not seen or heard of anyone at Stanford have a BMT for CML.  Great news!!

Best advise (and one that I, myself have learned)...quit fooling around with it and take it as directed.  We are very VERY fortunate we have a medicine that works for most of us and keeps this cancer from doing what other cancers do...kill us!!

Sheila

[TeddyB]

Charlie: We are just worried about rickpster, thats all. He was worried about not reaching pcru again, so a logical response to him would be to tell him how important adherence is.

A lot of people think its okay to skip doses on a regular basis, and alot do and probably do well, but in my opinion its not okay unless you are sick or cant tolerate the tki, in that case i would call the onc right away.

I also believe we answered his initial question and i hope he found it helpful, i believe he can reach pcru again if he stays adherent.