Thanks everyone for your support, as I go to a private chemo clinic it was the responsibility of the Oncologist to know that there was a contraindication.He had my medication list from the GP. After Oncol's Head Nurse advised him of the Akynzeo+Dexmethesone tremor problem and she said as it was part of a protocol not to take the Akynzeo any more, he phoned me. He said he would change Dexmethsone to an alternative, Maxalon/Zoffran etc in drip but to still take the Akynzeo 1 hr prior to chemo. (It states on the back of my Akynzeo script that it is illegal to administer it without Dex. as that is outside the protocol!)
I order the Akynzeo with my neulasta injection from a local chemist but he is not responsible for keeping track of the Amiltriptyline which I was prescribed shortly after my axilla clearance, as my husband may have purchased it at a totally different chemist.
What infuriates me is that after my GP and I decided to wean me off the Amiltriptyline so we could identify what, if any, meds were responsible for my increasing tremor the Oncologist told me he thought it could help and to start taking it again! I said No, I wanted the least amount of meds in my body and my nerve pain was now negligible!
He also contradicted himself about whether the slight tremor in cycle 1 was an essential tremor, and whether I should be taking Propanolol as prescribed by my GP as I have a family history. He said it was NOT the essential tremor, but the dexmethesone causing my shakes. When cycle 2 produced these much more devastating side effects he said it wasn't the Dex but an Essential Tremor and I should take Propanolol again and doubled my GP's dosage. Luckily I saw my GP and she was so horrified at my condition she referred me to the neurological team at our large hospital. I have lost faith in him and am getting a 2nd opinion tomorrow from the female Oncologist I originally wanted to choose, but went with the Oncologist who had a "cold cap" system. I wish I had not worried about trying to save it, as I have lost 2/3rd anyway. Most recently from stress I think, lol!!!
Well, thanks again everyone for your support, and Yes, I have said that if this was happening to a less forceful person (eg my mother) and one who can't do lots of research (plus get your valuable input on BCNA) then I would be in a much worse position.
Cheers, Pauline (Sirrah)
