NeuroTalk Support Groups - Hi from Brisbane!

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Hi from Brisbane!

Hi all
I joined to chat with others who may have experienced post chemo - peripheral neuropathy. I now realise that there are so many other neurological conditions and I salute you all for rising to life and battling on!
Glad to join you all
:grouphug:

Welcome aggie :)

Quote:

Originally Posted by aggie (Post 1043196)

So nice to meet you. I had Serous Uterine cancer and went thru 6 rounds of chemo (taxol/carbo). The chemo was from Dec 2012 to Mar 2013. I was considered pre-diabetic going into to this. Exactly a month after chemo ended I started having trouble with my feet and hands......thought the chemo was trying to 'get' out of my system so I worked in the yard a lot for 2 weeks.....by then I could hardly walk. Went to my regular dr and she immediately said 'neuropathy'. I did not know a lot about neuropathy but then realized that was why my onco would ask about my hands and feet prior to each chemo treatment. Long story short......I had to pretty much be my own advocate.....jumped around to dr's trying to figure out how bad it was and what I could do about it. Had all the blood work done....everything ok except my A1C was up to 8.7 which was probably caused by the chemo. Nerve test was also ok. Onco brushed me off and said it would get better. After 1 visit to a foot and ankle dr I asked for a skin punch biopsy because I had read about small fiber neuropathy. He did the biopsy and I have no A and C fibers left. Diagnosis is Severe Small Fiber Neuropathy. The dr told me there was nothing he could do for me and that I could only try pain management. He said out of 0 to 15 on the scale he could work with 4 to 7....mine results were 0. Said the nerves cannot be regenerated.

So there is my story. The last year had been a medical nightmare. I am now seeing a neuro I don't like very much but have an appointment at Emory Hospital in Atlanta, GA on March 25th. My new onco (was not comfortable going back to the one that had originally treated me) said going to Emory was my best bet to get some quality of life back.

I am a 51 year old grandmother......laid off from my job of 26 years just 2 months prior to cancer diagnosis.

So there you go.....welcome to this site and it's very nice to meet someone else who has chemo related PN.

Debi from Georgia

Debi,

I had responded to your post on....What to Do When Meds Don't Help.....(not sure you saw the post).

In that post, I mentioned about my oncologist advising me chemo would most likely worsen my PN. If you get a chance; check out the post.

Gerry

Good morning Gerry :)

Quote:

Originally Posted by ger715 (Post 1043288)

I did read your post and would also have declined chemo in your situation. I do have a new onco that I've seen once and he was so caring and nice. My husband and grown kids were never very fond of my 1st onco but I didn't listen to them.......I was so caught up in the cancer scare I could not think about anything else. I had a routine hysterectomy and when the path report came back they had found a small cancer that was rare but very aggressive (Papillary Serous Uterine).

After the chemo and the SFN set in like a running bull I was told by the chemo nurses that the doses of chemo I was on (taxol/carbo) were extremely high and they were not surprised. The only reason I can think of that my onco was in denial about the neuropathy and chemo is he was scared he would be sued ? Especially since mine didn't start until after the 6 rounds of chemo ended ?

I will be going to the new onco every 3 months as well as my Gyn. We do not have a local dr that does both.

Thanks Gerry

Debi from Georgia

Hi Debi sending you good wishes - Emory sounds promising

Hi Debi, it's really consoling to get a reply. You have had the run around with your oncologist - mine is not very inspiring either but luckily I only see him every 6 months. Anyway I am sure there is an answer to your neuropathy. Intragam is not easy to find on the web but it is a blood byproduct. I believe it comes from the Red Cross and it is absloutely clear in a glass bottle for infusions. It also has a companion product called Octogam. I wish I could refer you to my neurologist. I dropped a xmas present into her office in Dec and the receptionist told me that a patient they had in a wheel chair is now walking with a stick. The body is an amazing machine and I do believe that most things are repairable (one way or another). However empathy from doctors goes a long way and feeling positive about treatments is imperative. Keep in touch - I will be thinking of you on the journey.

Quote:

Originally Posted by St George 2013 (Post 1043263)

Quote:

Originally Posted by aggie (Post 1044470)

What kind of chemo did you have ? I would like to hear your story too :)

Debi from Georgia