74 replies to this topic

[Trey]

My question is for Trey- Do you think that all of these health issues were caused by Gleevec?  if so, hopefully, on Weds. she will wave goodby to Gleevec.

 

I don't know, but I doubt all of them are related.

[SandyG353]

With each situation that the doctors find, they tend to do biopsies to make sure that it isn't any other form of cancer.  I think that they are just being cautious.  I remember when I posted about the swollen lympth nodes on or around the lungs, one gal said that she had the same thing, but the doctors just watched it.  Another person from another group had a fungus. You sent me links to read. Fortunately, the swollen lymph nodes turned out to be nothing, but will be watched like the gal who had the same thing.  I guess if she is taken off Gleevec and no new issues occur, we would have to guess that it might be related to Gleevec.  I do know that Gleevec makes one susceptible to

melanoma.

[SandyG353]

Oddly, since the lab was changed, my daughter's no.'s have changed too.  For 7 years she has been 000.  The new lab had her test a month ago at .09.  The test was retaken a week ago and is .07.  My daughter's oncologist seems to feel that the problem is with the new lab.  Being that the numbers went down, he will decide in a week whether she should stop the Gleevec.  My thoughts would be to wait and see if the numbers go down further.  Any thoughts?  I am a bit afraid that if she stops the Gleevec at this number she will lose remission.

 

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[gerry]

My lab was changed over to another group who had bought the latest PCR test equipment. A number of my docs patients went from negative to the CML showing up.

[SandyG353]

That is good to hear.  I sent an e-mail to Dr. Druker who wants my daughter to take a PCR either from OHSU or Molecular MD.  He stated that  both will send kits.  He, also, wants a copy of one of her recent tests.  In the past when she had extreme and often cases of eyebleed and wanted to cut the doseage of Gleevec, I sent a letter to Dr. Druker who had her oncologist get a certain kit that was tested and showed that the Gleevec was being absorbed as it should be. Therefore, her Gleevec doseage was not reduced. Dr. Druker has been great in terms of responding to me and working with her oncologist.  It is unfortunate that my daughter takes no role in her treatment in terms of getting copies of results of tests, etc.  Unfortunately, I am the one who has to act on her behalf.

I think that it makes sense with what Dr. Druker said instead of waiting for her current oncologist to decide next week whether to take her off of the Gleevec without doing any further research or tests.  So, the e-mail from Dr. Druker will give him something to help make the decision.

[SandyG353]

Hi All.

My daughter's numbers with the new lab came back with 000. If it is the same in the next lab, she will be taken off Gleevec.   She decided

that there was no reason to get the kit from Dr. Druker for him to check her lab results which were .o7, then,05 because it is back to 000.

I will keep you posted.

Sandy

[VickiW]

Hi everyone!

Would love to hear an update on everyone's status.  How are you doing Jessica?  Sandy, so the journey for your daughter has begun, fingers crossed!!!

 

Update here; went for my 1 yr QPCR on Monday and I am still .000!!!!

 

 My Onc  remembered the "speedbumps" we had dealt with over the years (a couple pretty serious) and shared that he was in one of the weekly oncologists' lunch meetings recently and he was able to use how we handled one bump (pericardial/pleural effusions) to help another Onc with a patient dealing with the same thing.  (made me feel good to know my journey actually helped someone else)He then chatted a bit more (unusual for him) and ended with calling me his "Miracle" patient!  

 

BTW-this is also my 10 year survivorversary.  

[VickiW]

Ok, all you knowledgeable folks, I need your help.

 

The nighttime pain has been getting worse lately, waking me up a couple hours after I go to bed and can last quite a while.  I am no wimp and usually just roll with it but last night was so bad I nearly crawled out of bed for fear I was going to wake my husband with all my squirming trying to find a position that didn't hurt.  I am already on Gabapentin for the neuropathy

 

Also, I would be very interested in hearing your thought and/or theories as to why the pain occurs (have my own theories but really want to hear from you).

[gerry]

Found out my doc has retired. darn. They've transferred me to another doc in this group, will see how he is and make a decision whether I stay with him. I'm okay to switch somewhere else as it is a bit of a pain to see this group of docs. 

[VickiW]

Found out my doc has retired. darn. They've transferred me to another doc in this group, will see how he is and make a decision whether I stay with him. I'm okay to switch somewhere else as it is a bit of a pain to see this group of docs. 

Sorry to hear that!  Don't know what I'd do if I lost my Onc tho I might find out myself one of these days since he's definitely not far from retiring too.  Here's hoping you are able to find one just as skilled.

[Gail's]

Vicki W, there's a whole thread on tendon and joint issues. So sorry you're dealing with it, I am too! Not fun at all.

[gerry]

Vicki I saw your list of supplements, only other thing I can suggest is Glucosamine & Chondroitin, I have had knee trouble since my 20s and this actually works for me. Worth a try maybe as long as you are not allergic to shellfish. Will take around 4 weeks to kick in, though usually it is quicker for me if I have been slack and stopped taking it for awhile. My knee starts to remind me. :-)
Other than that maybe a short dose of predisone, helps end the pain for some, but for others it returns again once they come off it.

[VickiW]

Vicki I saw your list of supplements, only other thing I can suggest is Glucosamine & Chondroitin, I have had knee trouble since my 20s and this actually works for me. Worth a try maybe as long as you are not allergic to shellfish. Will take around 4 weeks to kick in, though usually it is quicker for me if I have been slack and stopped taking it for awhile. My knee starts to remind me. :-)
Other than that maybe a short dose of predisone, helps end the pain for some, but for others it returns again once they come off it.

Thanks Gerry for all the support and input, it's much appreciated.

Been on the GC actually for several years (dr recommended) because I have bum knee totally missing the carteledge thanks to a horse falling on me as a teen and totally making a mess of things.

I was on prednisone for a short time once after the accident a couple years ago where I wound up with a lot of hardware in my other leg and ankle.

 

Good grief!  Good thing I'm not a Ford, I'd be recalled!!!

[gerry]

Maybe try the prednisone for the TKI withdrawal. :-)

[VickiW]

Vicki W, there's a whole thread on tendon and joint issues. So sorry you're dealing with it, I am too! Not fun at all.

thank you for the tip!