Forum Discussion
Chemo and Guillain Barre Syndrome and r there any groups on Sunshine Coast, Coolum to Noosa Region?
Hi, I was only diagnosed with Breast cancer on 1 Aug and had a mastectomy plus 2 lymph nodes on 10 Aug with a further op on 16th to remove 15 more lymph nodes. Was diagnosed with Gr 3 multi focal DCIS, 5 tumours, largest 22mm in a cluster. total area 6 cm. Initially tested as triple negative but retesting shows 20% oestrogen dependent on one tumour and one lymph node. All that after having a negative breast screen exactly 12 months prior! It has been a frightening whirlwind of appointments, scans, biopsies, operations with the added fun of finding I was allergic to fentanyl and Cyclozine given during surgery. I am now facing the prospect of 6 mths chemotherapy starting on 13 October which I am not sure how my body is going to respond to as I had Guillain Barre Syndrome when I was 23 and it is a neurological shutdown of the nervous system in response to a virus in the body. Even having the flu shot can trigger it again. Has anyone else had Guillain Barre before chemotherapy or know of anyone who has? Am not sure if groups of people get together in certain regions? If so are there any groups or individuals who would like to link up on Sunshine Coast, especially Coolum to Noosa region? I would be grateful for any comments, Sirrah
47 Replies
- I can't answer about the meds but as far as nerve pain goes, mine lasted a few weeks from memory. It just improved until I realised that I was no longer experiencing it. I do still have the nerve damage, though - numbness and scrambled signals - I don't think that will change much, now (last surgery was in January). I am getting some pain on my side from the pressure of my bra since radiation.
- Hi everyone, hope your weekends are peaceful and relaxing. I have been lucky enough to watch some whales with calves migrating south! As I mentioned recently I had a mastectomy and a week later had a further 15 lymph nodes removed as one of two taken with the breast had a medium level of cancer. Consequently I have a lot of nerve damage to my left arm. I was prescribed Lyrica which gave me suicidal thoughts so have been changed to Amitriptyline which gives me some nausea and heart palpitations. Has anyone had any experience with nerve pain and/or these drugs. How long will the nerve pain last? Is it better to put up with it rather than take medication for it? I would normally ask my surgeon but she has just gone on holidays. Thanks, Pauline
- Thanks @SoldierCrab@kmakm@Sister and @primek for all the support. I am a fairly recently retired Japanese Teacher who was enjoying time with my husband in retirement. The last couple of days I feel like I have a job again, so many telephone calls, notes to enter into the My Journey notebook and so much to research!!! I made it crazier by pursuing two different chemo centres, so double the number of appointments with Doctors, oncology nurses and breastcare nurses. Have decided to go with the one that provides the cool cap to see if I can preserve some hair! Good news today when I was told I will not need radiotherapy. Bad news today newly formed seroma may delay the start of my chemo, maybe that's a good thing, haha. Thanks so much @Deanne for the local group info which I will investigate tomorrow and also thanks @onemargie I will pm you.
- I’m happy to chat anytime @Sirrah. Just PM me and ill send you my number. Margie. Xx
- Hello @Sirrah,
Here is a link to a support group in Noosa.
https://www.bcna.org.au/services-and-support-groups/support-groups/noosa-district-breast-cancer-support-group/
I have not attended the group myself but have met the lady who runs it at the BCNA conference last year. I live on the Sunshine Coast and had bc, mastectomy, chemo and radio in 2013. I do not attend any support groups but have found terrific support through the on-line network over the last 5 years or so.
As the other ladies have suggested, your breast care nurse may have some more support group info.
So sorry you find yourself in this situation and I wish you all the best with your treatment. Take care. Deanne x - Do you think you'll ever ask @Sister? I found the same thing with my doctors, the stage was never mentioned until I asked. They went on about the grade and tissue pathology much more.
- Welcome @sirrah Yep! Sometimes the doctors aren't as clear as they should be and sometimes we think we're listening but don't catch everything. Have you got someone you trust to take to appointments? It's always useful to have a second pair of ears and not just to hear what is being said - sometimes, someone else will think of a question that you may not have picked up on. The other thing that I find useful is to keep a record of the side effects of any treatment (I print it out and give it to the doctor) and also jot down questions as I think of them, otherwise I would not remember at the time of the appointment. As for stages, many doctors don't find it particularly useful - to be honest, I'm still not sure if I'm on the upper range of 2 or the lower range of 3, as diagnosis changed for me after the path report.
Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet.
It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time.
Navigating the online community formerly the what and how thread.
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other resources.
https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.
How to understand your pathology reports
https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html- Hi Sirrah. Welcome to the forum! I'm sorry you find yourself here but I hope you find it as warm and supportive as I have.
Give this link a try to see if you can find a support group:
https://cancerqld.org.au/get-support/
The learning curve at the beginning is vertical eh? You'll soon be across everything but don't hesitate to jump on here anytime you've got a question.
Hope you've had a good weekend. Big hug, K xox - @SoldierCrab can you put up your wonderful links to assist also.
A breast care nurse should be able to help you with support groups in your area. Have you been linked with one of those yet?
