8 replies to this topic

[dolphin]

Hi Everyone !

My mother has been on Gleevac for 8 months now and has only reached a close to 1 log reduction. Her report says BCR-ABL translocation out of range is 12.35%

Our Onc increased her dosage from 400 mg to 500 mg 3 months back. He wants us to wait till she completes 12 months and then decide if a switch in the medicine is necessary or not.

This is keeping me very worried .. Any thoughts or past experiences are most welcome around the time it takes for complete cytogenetic remission.

Also to add to this, she has been going to through a severe facial water retention especially around her eyes and cheeks for the last 2 days. Today it was worse and she was having difficulty even opening her eyes.

Talked to the doc and he has asked to run a couple of tests like Kidney function test and Liver function test etc.Results are awaited.

I wanted to know if someone has experienced severe facial edema and what was the line of treatment, I searched the net for causes and got even more concerned when I read about kidney diseases and functioning problems.

Can 500 mg of Imatinib cause kidney problems leading to extreme facial edema or is this just a side effect.

She has experienced swelling around her eyes before and it usually goes away with a mild dosage of lasik.But this time it seems pretty bad.

Trey, hoping for some answers from you and other.

Thanks !

Surabhi

[hannibellemo]

Good morning, Surabhi,

Are your mother's liver enzymes being monitored on a monthly basis? I developed severe liver toxicity at 8 months on Gleevec; I'm not saying this is what is happening to your mother - it's a rare side effect but one to be taken seriously.

Trey can be more specific on the switch but there really is no reason not to switch right now. I was switched to Sprycel and reached MMR in 8 months. Sprycel is least like Gleevec chemically so it seems the logical choice for 2nd line unless your mother has specific mutations that Tasigna might be better for. I believe I've read that increasing the dosage of gleevec to reach the early benchmark (CCyR) results doesn't appear to be as durable as just switching to a stronger TKI.

Edema is a common side effect of all of these TKIs but peri-orbital edema like your Mom's is very common on Gleevec. I have found that sleeping with my head elevated (on a wedge) helps with both the relatively minor edema I experience and sinus drainage.

Is her doctor monitoring her by FISH until she reaches CCyR? It is a more useful monitoring test up until that point.

It does sound to me as if your mother's doctor may not have much experience with CML, that is not unusual and generally not a problem unless the disease process is problematic  It might also help to get a second opinion if you are able to. Look for a hemotology/oncologist if possible.

Good luck to you both, your Mom is lucky to have you looking out for her best interests!

Pat

[dolphin]

Hi Pat,

Thanks for a prompt reply. We are waiting for the liver test results  and I hope they are fine.

My mom is being monitored by PCR tests and not FISH at the moment. Fish tests were done at the beginning of the diagnosis.

I think going to a second doctor is important as there is slow progress so far.

Her BCR ABL result was 16.7 % in January and was 12.35% in May, so the doctor said that a decrease is good but yes its slow. He wants us to wait for a couple of more months ..

This is quite confusing.

Thanks

Surabhi

[Tedsey]

I think it is Tasigna that is most like Gleevec chemically.  Gleevec and Tasigna are Novartis drugs.  Sprycel has a little different formulation and is put out by Bristol-Myer Squibb.  I switched to Sprycel 8 months ago.  And I do not have the swelling under my eyes like with  Gleevec.  I agree with Pat.  There is no reason not to change drugs and see if the swelling calms down and/or your mom gets a better result.  But it is probably also a good idea to have her liver function checked, and a metabolic panel done (but I am not very knowledgeable about this---so listen to Pat).  My onc usually does a CBC with differential and a metabolic panel on me each time I see her.  She also checks a couple other things every few months due to my unique issues with CML.

I was on Gleevec for 5 months.  And although I achieved a Partial Cytogenic Response, (or "Major" Cytogenic Response--this depends if you are pessimist or an optimist), my onc felt my progress was staying flat, plus some other bothersome issues.  The switch to Spycel has been much better for me.  The "normal" time frame for reaching a Complete Cytogenic Response (there is actually no remission with CML.  You only get a drug "response", thus the "R" in CCyR, or MMR) is 1 year to 18 months.  Your mom seems to be doing fine in that regard.  Many people have had a very quick response to Sprycel.  I think I read it could be around 50% who achieve a Major Molecual Reduction (MMR) on the drug within 6 months (I have not---but I am not worried as long as I remain CCyR).  However, I achieved CCyR (Complete Cytogenic Response---which is also written as CCR) after 3 months on Sprycel (so, that was speedy, but the Gleevec probably helped it along).

If your mom achieves a CCyR (CCR) at 1 year or 18 mos., that is what the guidelines say is "expected" progress.  Of course, faster is always more welcomed, but as long as the numbers go down, we have reason to celebrate.  I am sorry to say that due to shoddy lab work when I was diagnosed and some other buffa"s", I am not totally clear on what log reductions are.  However, I believe that CCyR is a 2 log and MMR is 3.

I am not Trey or Pat, but again, I would not wait to switch drugs (if only due to less eye swelling and comfort).  What point is there to waiting?  So she could sufferer a little longer?  Not sure I get oncs sometimes, but I agree, it seems like your mother's is not very familiar with CML.

Best of luck and good wishes to both of you,

Tedsey    

[Trey]

Gleevec can certainly cause edema.  But it does not indicate kidney or liver issues by itself.  That would be a separate issue if tests show any problems there.  Given the slow response to Gleevec and the edema, I would want to switch to another drug now.  There is nothing magic about waiting for 12 months.  There is enough information already to show the need to switch to another drug.  It should not be such a hard decision for the Onc.

[Tedsey]

Sorry to hijack a little.  I don't understand.  At 8 months, did not have a 2 log reduction (but my PCR # at dx is unknown).  I thought it is OK to achieve CCyR at 1 yr to 18 months?  I got what looked like a 2 log (assuming because I was CCyR) at 1 year.  Nevertheless, I was switched to Sprycel because my onc thought my progress, more of less, was stagnant on G at 6 mos.

I guess I am just confused on what 1 year to 18 months really means.  Is it better to forget about that and just compare PCRs and rely on log reductions?

Teds

[CallMeLucky]

As Pat mentioned, until CCyR the doctor should be looking at FISH and not relying as much on PCR.  So the fact he is not doing FISH and understanding what is going there is a concern and would prompt me to seek out a second opinion.

We have to remember that treatment is evolving for CML so things that were considered "standard" just a year ago, may be looked at differently today.  So while 12-18 mo was very reasonable when Gleevec was the only drug available as first line, now that there are newer drugs available many doctors I believe are questioning if it makes sense to wait.  If you have a patient that is responding at less than an optimal level, does it make sense to hang in there and see what happens or is it better to jump to one of the other drugs and drive the disease into remission faster?  I don't know if anyone knows for certain and other drugs have other side effects and issues so there is always some variable involved.  For this particular case, the slow response coupled with the severe edema would prompt me to explore switching drugs now rather than waiting.  If I was being a turtle with no side effects or moving fast but with some side effects I might be more inclined to ride it out, but in this case, I'm with Trey, why wait?  I would get a second opinion from a specialist that has experience with CML, preferably at a reputable cancer center.  Get a FISH and figure out what the status is with regard to cytongenetic response.  Consider switching to another drug to alleviate the side effects and drive the response faster.

Best of luck

[Trey]

The main reason to switch for her is the edema, not the FISH results.  But both together make this a clear case to switch.  Why suffer severe side effects when it is not necessary?

[dolphin]

Thanks everyone for your responses and concern, will be going to a new onc in a couple of days .

Does anyone know about sprucel support in India? we are located in india and i am not sure if there is support available. Sprycel's monthly cost is equal to our monthly income here which makes it quite unaffordable. Also our insurance here doesnt cover medicine.

Await your responses.

Thanks

Surabhi