34 replies to this topic

[SunNsand]

I take 300mg. My Onc switched me from 400mg about 4 mths. after my diagnosis due to side effects. After reading this forum I don't think it was a good idea to switch so soon, I hadn't even reached CHR. In time, I did reach CMR, lost it by a small margin, went back to CMR and my last visit I jumped out of it again so I am pretty anxious about my Sept. visit.

[Trey]

If less than 400mg Gleevec per day, it would be best to take it all at once, at a time you choose.

[markandelly]

I understand your theory and it sounds like its working - have you had blood work done?  how does it compare to your blood work when you were on 400 mg/day?  If your blood counts are normal and there's no evidence of leukemic cells in a PCR test, then  they should get that info out to the public asap.   It seems that the lower dose causes less side effects.  You said you don't have side effects anymore right?  Your a pioneer! Thanks for all your information & input.

Newmans, NC

[Trey]

"have you had blood work done?"

Answer: Every 6 months.

"how does it compare to your blood work when you were on 400 mg/day?"

Answer: Same -- PCRU

[Marnie]

So does a negative FISH and BMB mean the same as PCRU?  Because both were negative a few weeks ago, my doc didn't do a PCR test.  Which is the most sensitive test?  My last PCR ( a month before) was .002, back down from .008. . .but still haven't had documentation of 0.000.  Is it correct protocol to NOT do a PCR when FISH and BMB are negative?

Now I'm in waiting mode until January when I get to switch insurance AGAIN and go back to the old (new) doc.  The interim doc that I saw this week seemed to sort of know his stuff, but I feel like I'm in limbo until January. I will stay on schedule and do the next PCR in November. .. but it will be at a completely different lab.  This is incredibly frustrating!!

Marnie

[Trey]

Marnie,

Mixing PCR and FISH is like mixing mouse and buffalo.  Must I post the photo again?  I was chided the first time.  Hannibellemo would rip me a new one.

You asked: "So does a negative FISH and BMB mean the same as PCRU?"

Nope.  Grade is F-  which stands for.....well.....never mind.

Negative FISH and BMB = CCyR (about 2 log reduction)

Negative PCR (PCRU) = CMR (about 5 log reduction)

"Is it correct protocol to NOT do a PCR when FISH and BMB are negative?"

Other way around.  After CCyR only PCRs are useful.

Must we start a series of jokes about ElEd Majors???

[Marnie]

Well poop. . .that's pretty much what I figured.  I was just surprised at no PCR test along with the BMB.

Now is that mouse poop, or moose poop?  And, no, please don't post the picture.  It gave me the heebie jeebies for quite some time.  No need to go there, again!

m

[markandelly]

Marnie, you've been on this for awhile...do you still have to get monitored more than 2x a year?  Do they still do BM on you?  

[Marnie]

Well, that's an interesting question,  Newmans.

My former onc didn't really follow NCCN guidelines, so for my first 2+ years I had no BMBs, except for the one at diagnosis.  The PCRs have been done pretty regularly at 3 months.  I recently switched docs, after having lost confidence in my onc, and so my new onc wanted to do a BMB since I hadn't had them on schedule.  But. . .since I had just had a PCR a month prior, and (or so he said) since the FISH came back negative, he didn't do the PCR with the BMB, even though they did draw blood for it.  Thus, my questions (stupid though they were).  So I guess it's nice to finally have confirmation of CCyR, even though I probably hit that landmark awhile ago but didn't know it since I had no BMBs.  If I weren't such a turtle in my PCR numbers, I wouldn't be so uptight about the danged numbers and landmarks.

So now my testing schedule is really messed up, especially since I just had to see another new onc (insurance woes that I will not go into).  Scheduled for a PCR in November, but then in January will switch back to the other new doc when I switch insurance again, and will probably have a PCR done then, since it will on the same lab as the one in early August (but different than the lab in November).  Sheesh!!  I get dizzy re-reading what I just wrote.  Or maybe it's the wine.

Marnie

[markandelly]

Lol Marnie - sounds like you are doing well.  Yes you will surely be more at ease if and when your crzy docs will give you one solid answer and stop sticking you with needles alot :-(   I hate to think of you having to get the BM test or any other test, but once you get your PCR's on a regular basis and they all say 0.000000000 you will be a happier camper

Thank you for writing,

We will keep everyone posted as Mark trying to find a  way to get to feeling better meanwhile he ticks along like a Timex watch, working, mowing, jogging, trying to live a normal life but the side effects are a problem after all these yrs he's getting pretty frustrated.

will be in touch

Ellen

[markandelly]

I understand your theory and it sounds like its working - have you had blood work done?  how does it compare to your blood work when you were on 400 mg/day?  If your blood counts are normal and there's no evidence of leukemic cells in a PCR test, then  they should get that info out to the public asap.   It seems that the lower dose causes less side effects.  You said you don't have side effects anymore right?  Your a pioneer! Thanks for all your information & input.Newmans, NC

200 worked better for a yr but when pcr went up from .0008 to .003 his dose has been bouncing around including 2 wks off. Not sure abt his next move. Might quit for awhile. I read that cml is slow progression might be ok to take intermittent breaks after yrs of remission

[markandelly]

Well, that's an interesting question,  Newmans.My former onc didn't really follow NCCN guidelines, so for my first 2+ years I had no BMBs, except for the one at diagnosis.  The PCRs have been done pretty regularly at 3 months.  I recently switched docs, after having lost confidence in my onc, and so my new onc wanted to do a BMB since I hadn't had them on schedule.  But. . .since I had just had a PCR a month prior, and (or so he said) since the FISH came back negative, he didn't do the PCR with the BMB, even though they did draw blood for it.  Thus, my questions (stupid though they were).  So I guess it's nice to finally have confirmation of CCyR, even though I probably hit that landmark awhile ago but didn't know it since I had no BMBs.  If I weren't such a turtle in my PCR numbers, I wouldn't be so uptight about the danged numbers and landmarks. So now my testing schedule is really messed up, especially since I just had to see another new onc (insurance woes that I will not go into).  Scheduled for a PCR in November, but then in January will switch back to the other new doc when I switch insurance again, and will probably have a PCR done then, since it will on the same lab as the one in early August (but different than the lab in November).  Sheesh!!  I get dizzy re-reading what I just wrote.  Or maybe it's the wine.Marnie

Lol marnie I just read this 4 yrs later. I predict you're doing fine . Wonder abt your meds but mark n I have determined each person is different n everybody is trying to figure out how to stay in remission w/o taking meds that make u feel like cr*p. The connection with immune system is of interest to me b/c I was dx w. Grave,s autoimmune 2 yr ago. Similarly I have to find correct dose of med to stay in remission but can and do stop taking it when thyroid levels are good .

[ROM1212]

Hello everyone.

 

Been away from this board for awhile but thought I would contribute to this discussion.  Much like Trey I was a fast responder on Gleevec 400mg, achieving PCRU within 6 months.  I stayed on 400mg for 5 years, after which I reduced my dosage to 200mg, without my onc's knowledge or approval.  I felt very comfortable making the change based on the informed input of people on this board and elsewhere.  After remaining PCRU, I informed them of the change after one year.  Beginning in year 7 and up to now, I alternate taking 200mg on even numbered days, and 100mg on odd numbered days.  8 months in, I've remained PCRU.

 

I made these changes because of concerns over long-term toxicity.  I believe the side effects have been reduced because of the lowered dosage and my efforts to eat well and stay in shape.

 

I wish the best to everybody on this board!

[Trey]

ROM1212,

So that's what the 1212 means: alternate 100mg and 200mg -- 1,2,1,2.......

[scuba]

Hello everyone.

 

Been away from this board for awhile but thought I would contribute to this discussion.  Much like Trey I was a fast responder on Gleevec 400mg, achieving PCRU within 6 months.  I stayed on 400mg for 5 years, after which I reduced my dosage to 200mg, without my onc's knowledge or approval.  I felt very comfortable making the change based on the informed input of people on this board and elsewhere.  After remaining PCRU, I informed them of the change after one year.  Beginning in year 7 and up to now, I alternate taking 200mg on even numbered days, and 100mg on odd numbered days.  8 months in, I've remained PCRU.

 

I made these changes because of concerns over long-term toxicity.  I believe the side effects have been reduced because of the lowered dosage and my efforts to eat well and stay in shape.

 

I wish the best to everybody on this board!

 

Rom - Have you thought about stopping altogether and testing monthly to see if you retain PCRU?