Tremors, difficulty with speech and walking, head shakes! Auto immune disease?

Hi everyone who has been supporting me on this quest for answers! Yes the 2nd opinion oncologist was much more supportive, agreeing that I needed to firstly exhaust all answers from neuro team, then get WELL, then make a decision on when/if I return to chemo, but she said definitely not to have the AC again, which my original Oncol was trying to get me to do.  I said that I will def. NOT have Paclitaxel or any taxons due to the side effects of peripheral neuropathy (I still have residual nerve damage from my Guillain Barre Syndrome aka AIDP which is a neuropathy (Acute Inflammatory Demyelination Polyradicular neuropathy) and is an auto immune disorder of the myelin sheaths in nerve endings.  Therefore I am not going to take the chance even tho my orig. Onco said yesterday "Not everyone gets the side effects". No, but my weird body surely will!

2nd opinion Oncol. Said she would mix some chemo drugs that do not belong to the A,C or T classes if I want to go ahead at a later stage.  Has anyone had any experience with this for adjuvant treatment?

I hear you, @Sirrah. Hope your 2nd opinion appointment went well. This stuff is tough enough at the best of times, without the extra challenges you are having
You're in my thoughts.

@Zoffiel and @Irb_03 I can't make too hasty a decision because it may not turn out to b any of the chemo drugs, rather my body's auto immune response to having the cancer or the chemo drugs.  My neurologist said yesterday that even tho those 2 drugs r contraindicated he doesn't believe it is serotonin toxicity.  He is still waiting on lumbar puncture and blood results to test for myasenthia gravis (I have lots of the symptoms) or fungal infection. 
Anyway it will b interesting to hear the 2nd Opinion Oncologist's thoughts today!

Agree with @Zoffiel

Sack him. You would not put up with this shit from your hairdresser. Mxx

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)

Hi @Sirrah, my thoughts are along the lines that I suspect you are thinking. If you have been on both these medications that can cause seritonin toxicity syndrome, what is the interaction between the 2 drugs, and what damage could the combination cause. Is the Akynzeo a medication that you're given to take when you get to the hospital for chemo? I would agree with @primek, it should have been picked up by someone, a pharmacist, someone in one of your teams.
I'm sorry this is happening to you

Oh my. I hope this means things should  improve very soon. There are other drugs for neuropathic pain that shouldn't cause those issues if still needing anti-nausea meds. I'm surprise the pharmacist didn't pick up on it. 

I was told Akynzeo was a new drug in January this year. I had no trouble with it. I'm so sorry you're having such a difficult time. And I agree that you shouldn't have to be doing all this research and chasing up. I know we have to advocate for ourselves, but this is beyond the pale in my book. It makes you wonder what people who aren't as forthright and clever as you, do in this situation. Keep us informed and don't give up. K xox

@primek, thanks for your advice, I will check with my GP but I am sure in all the tests she has done, she mentioned thyroid was clear.

 I have since discovered that 2 medications given to me - Amiltriptyline, by surgeon for nerve damage, and Akynzeo, by oncologist for anti nausea r contra indicated, listed as SERIOUS level as they r both Serotonin Raisers and can produce Serotonin Toxicity Syndrome. My Oncol. knew  I was taking Amiltriptyline. I asked a DR (was put in Stroke Ward when admitted to hospital last Fri and Sat as ability to breath and talk much worse) about the contraindication, who said I needed to check that with my Neuro (same hospital) as he didn't know about that! He said I should see the neuro team again within 2 weeks!!!!!  

   Honestly, it took me 5 mins to find when I googled Akynzeo last week after advice on here that it was it was a fairly new med. and I should check it out. (Thanks @Zoffiel) Also remembered neuro team had jotted it down to "look at that medication " on my initial consult with them over 2 wks ago (have seen them 3 times in 2 wks).   I had left that in their capable hands and not checked it out as they knew that I was taking both those medications.  My husband and I feel that WE shouldn't have to b constantly following up this stuff!!!!

Has anyone else had any issues with Akynzeo please?

thanks again everyone xx