Hi All,
Recently, my 12 y/o son has been experiencing an increased amount of pain - particularly in his legs and back but sometimes throughout his body if he doesn't catch it early. He's on 400 mg Gleevec and has been MMR for about 1 year.
What are some of the best pain meds to use. He has break through pain with just Motrin. We avoid Tylenol.
Any suggestions would be appreciated.
Take care everybody,
Tracey
Dear Tracey.... I understand why you are worried about your son taking medications for pain relief... especially paracetamol (called tylenol in US) and/or codeine. I agree that codeine would be a worry- especially since reading that addiction is a real issue with that drug.
I have just come back from a 3 day conference for CML and GIST patient advocates and there was an interesting session on side effects and how to manage them effectively. There was a German research clinician there and she said that recent studies in Germany have been looking at the effectiveness of acupuncture as a way to overcome pain- especially in cancer- and the data from the studies show that it is extremely effective way to controlling or even overcoming pain completely.
I have used acupuncture in the past and found it very helpful (a short course cured me of long standing migraine). One of the delegates asked if there would be any contra-indication of using acupuncture when being treated with a TKI and the answer was that as long as all you counts are in normal range (ie. platelets are normal) then it would be safe to use this form of complementary therapy. Of course you should try to find a very experience therapist but I am sure there are ways of you doing that. If you son is afraid of needles then be assured that my own daughter regularly has acupuncture and has no problem at all.
I hope this is of some help- it is just that this particular researcher said that there is more and more research that indicates it is a very effective form of therapy.
best wishes,
Sandy
I will be uploading all the information from the conference very soon.
Thanks so much Sandy for suggesting accupuncture. I'd love to read any and all information you received at the conference.
I have been asking my local consultant as well as Dr. Druker about pain relief - and I can't seem to get one exact answer.
I've tried to introduce Ben to transcendental meditation - but, at age 12, he'll have none of it. Accupuncture may better suit him. We're meeting with Druker on July 8. I'll talk to him about it. I really don't think there will be any problem with it at all - he thought TM would be a great idea too.
Thanks again and I hope all's well with you too.
Best wishes,
Tracey
P.S. You probably already talked about the open Phase I clinical trial for Gleevec + Zileutin. That seems most promising to me. My father has spoken with the lead researcher as well as Dr. Li. It's likely that if all goes well in the 2 year study, Phase II will be open to children too. I'm keeping my fingers crossed.
Three years ago, I became addicted to codeine without realising until I stopped it and had withdrawal symptoms. I was given it again (and morphine) during a recent episode of surgery and it gave me such problems that I decided to go without and just use paracetamol. I would not countenance taking codeine again. I have also taken lots of paracetamol at the same time as Glivec without problems - my PCR results are stable at about 0.002%.
John
Thanks for your thoughts John. That's my concern too. The doctors are aware of the potential for addition, but there seem to be few alternatives.
I'm looking into alternative medicine - like accupuncture. It's just that my son - who is 12 - doesn't like that idea just yet. It's a tough call
Thanks again.
Tracey
