Chemo and/or Dexmethesone side effects

@SoldierCrab no problem at all. @kezmusc I have had 2 brain scans also,  a week apart as the neurologist wanted to rule out brain cancer, encephalitis, also a lumbar puncture for brain stem or spinal cord/fluid issues.  All clear but they continue to say it's not the drugs.  Even my oncologist who has been trying very patiently to get me to have the drugs (AC plus Dexmethesone ) again, now agrees that I probably can't have them and is talking about CMF or just taxanes.  I can't risk them as I already have increased lack of sensitivity from the first 2 AC cycles.  I have had loss of feeling in my fingers for 40 yrs and I have a paralysis on r/h side of my face, both a legacy of Acute Inflammatory Demyelenating Polyneuropathy years ago. NSW Uni study says any previous neuropathy rules me out for any taxane.  I think I have to try Aromatase inhibitors and see how that goes for 5 years and hope the side effects are not too bad.  I read several trials in UK r using AI for preventative reasons for those with a family history of breast cancer. Any feedback on people choosing just that solution for adjuvant treatment?

Sirrah work is busy will do replies on the weekend sorry.... 

P.S I've had two brain MRI's as I was convinced it was the nasty thing back and they wouldn't believe me when I said I thought it was the drugs.  Both MRI's 3 months apart were clear.

HI @Sirrah,

I have just copied this from another discussion I posted it in.  Pretty much sums it up though.  It has gotten better with time and a lot of brain training apps, crossword puzzles and bucket loads of vitamin B.  I take the Tamoxfen 3 months on and 3 weeks off (it's not recommended but it's how I deal with it).  My BC was 90% both ER and PR positive so I do the best I can.


May I just add a little to the brain fog issue?  Verbal memory and I think they call it executive functioning is impacted as well.  For example,  mixing two words together, losing words totally, starting a sentence and then just forgetting what you were going to say half way through. There are a lot of us around here describing every day items as the thingamajiggy or whatchamacallits.
  Multi tasking is sometimes very difficult and the ability to focus under pressure is regularly non existant.  This leads to being anxious because you can't think and feel like a complete idiot and then the worry makes it worse.  There have been times I have had to leave my desk for 10 minutes until I can think again.  There are days I choose not to drive because I don't trust my own judment. There are times I do not participate in conversations because I am bound to say something stupid or completely forget things that I know I know.   Within a week to 10 days of not taking Tamoxifen I am back to very close to perfectly normal.  It's a whole lot more than being a bit foggy. 

......slight peripheral neuropathy for 40 years

Sorry the above was a draft I just found that I obviously failed to hit the POST button properly ages ago.  I haven't been on here for a while, have been feeling quite low as I am still not able to find a clear pathway through my treatment options. @SoldierCrab could u briefly explain what kind of severe reactions you were having to your treatment? I was heartened to hear that you r well 6 years along the track!  

I know everyone is different but my Oncologist just wants to proceed with the AC which was the problem so I am not going to do that. Nor can I have any taxols as I have had slight for 40 years so do not want to increase it!

I have only been able to find people receiving other treatment eg Xeloda (Capecitabine) if they have unfortunately moved into metastatic stage. Therefore I can't get the F Flourouricil without it being part of the FEC and the EC r the same as what I have had!  

My other alternative (besides doing nothing) is to try Aromatase inhibitors for 5 years to counteract the questioned 20% oestrogen found in 1 tumour and 1 node during second testing.  Any thoughts on this?  It still doesn't tackle my triple negative on the rest of the 5 tumours, although there is nothing "evident" in my body post surgery!  SOooo confused!!!

SoldierCrab said:

Sirrah 
 I looked like "jumping jackson"  onco cancelled rest of paclitaxel.

tell me has it settled since you been waiting?

We didnt complete any of my courses 
due to severe reactions
Im like allyjay, im a peppermint ripple person.... I take the weird reactions to a new level.
my treatment ended up being 
1x Tac
1x ac
6 x pacitaxel
1x Fec full strength
2x Fec quarter strength

I am over 6 years since diagnosis cancer free
most side effects gone

Hi  kezmusc,  could you please tell me what the symptoms of your brain reaction to Tamoxofin were?  I think there r a myriad of drugs that provoke weird reactions in cancer patients and that is why they say they can't predict how we will be effected, everyone is different!! Yes, we found research about at least 3-6 US cancer patients with my symptoms of speech and gait, one of which had b/c and had cyclophosphamide like I have had.  He wouldn't entertain that notion and said no, this is not what u have as US research had called it Parkinsonism(where u have physical but not mental deterioration like Parkinsons Disease). He said we have determined u don't have Parkinsonsism because that is always one side and u have bilateral!  I said maybe my body just has it all over.  NO u don't fit it! LEts move on and do MRI w/contrast to rule out brain cancer, encephalitis, cancer in brain stem and spinal cord regions.  I argued against doing a hasty lumbar puncture as had one during diagnosis for Guillain Barre Syndrome when I was 23 (an auto immune disease) and wanted more investigation. he said "don't u want to know what is wrong with u?  We decided to have it and r still waiting for some results after 14 days!  I gave the neurologist a list from,Chicago Uni yesterday of drugs I have been given that were causes of problems in this area, specifically myasenthia Gravis which GP had done 1 test out of 2 tests so still not sure, as many symptoms fit like muscle weakness, double vision, eyelid drooping.  

The neurologist shocked me when he  told me only yesterday that sometimes the cancer sends chemicals to the brain and then the brain can produce several "side effects" that can b different for each person.  He says if everything else is ruled out, he is sure it is Functional Nuerological Disorder (FND) and I should b treated with physio, but Oncologist says Brain (independent of my mind is doing it) and I need psychologist
I am so confused!

Sirrah 
 I looked like "jumping jackson"  onco cancelled rest of paclitaxel.

tell me has it settled since you been waiting?

We didnt complete any of my courses 
due to severe reactions
Im like allyjay, im a peppermint ripple person.... I take the weird reactions to a new level.
my treatment ended up being 
1x Tac
1x ac
6 x pacitaxel
1x Fec full strength
2x Fec quarter strength

I am over 6 years since diagnosis cancer free
most side effects gone

Hmmm, @Sirrah.

It becomes a problem when someone get's side effects that are not on "the list".  I was told my brain reaction to Tamoxifen was extreme and rare.  It took me less than 5 mins on google to find that no, it was not all that rare and there were ample people out there with the same problem and studies being done on it.  But not in AUS.

If it's not from the chemo or steroids it's a wierd freeky coincidence that it began straight after it. Have you checked with the oncology department
pharmacist?
Second opinion from another oncologist maybe?????  I get the feeling they don't think we really know our own bodies at times.   Sometimes you just have to make some noise until someone listens to you. 

 On a good note.  I found the Paclitaxel a walk in the park (well almost) compared to AC.  

HI kezmusc yes I was wondering about the Akynzeo as the Head chemo nurse told me over the phone not to take it along with the Dex in drip and the decreasing 4 days worth.  However when I spoke to Oncol. by phone he agreed to change Dex to another anti nausea drug but still to take the Akynzeo.  That didn't happen because I deteriorated so quickly that GP and neuro team said ok to postpone until lumbar puncture results were in, still waiting and therefore still trying to get advice from diff. Drs about risk of having A+C again. THEN I have to make a decision if I will have the 12 weeks of Paclitaxel!  I think all these decisions even with the help of Drs giving different and sometimes conflicting advice are too stressful for a lay person!!! (even tho I have unfortunately had to become somewhat of an expert on MY situation)

I just remembered one of the neuro team said to the other we need to check out Akynzeo, which I guess they did, cos now they r saying they don't believe it's any drug.  Just waiting on blood and lumbar puncture tests for antibodies and myasenthia gravis, and ??

Worringly they haven't investigated  some research my son found of people having similar problems with speech and gait in US. Those people were described as having Parkinsonsim, which is the motor skill problems but not the dementia part of Parkinsons Disease. One had breast cancer and was given Cyclophosphate, like me! The neuro team ruled out me having Parkinsonism because it is bilateral, not on just one side! Again I wish I could insist they look further into those cases, but they so no, that doesn't apply to you.

sorry to rant, just frustrated!