Chemo and Guillain Barre Syndrome and r there any groups on Sunshine Coast, Coolum to Noosa Region?
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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, Pauline0
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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.0
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Oh! And so cool about the whales!0
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Thanks @Sister do I understand it correctly that u didn't take any medication? I would prefer not to, although the Amiltriptyline has a sedative in it, so that is helping me sleep more than the previous 2-3 hours a night. I want to try to put the least amount of medication into my system as I begin 6 months chemo next week. Yes, we r so lucky here at our place as we can see the whales migrate north from end of May and from now, south until early November. Someone asked me if I have been meditating to calm myself since my diagnosis but I said I just watch the whales!2
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I took Panadol and sometimes codeine immediately for general pain when I first got home but for the nerve pain it didn't make any difference. It was just a "put up with it and this too shall pass" scenario. Took a truckload of different medication to get through chemo, however.1
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Hello Sirrah,
Tho I don't get any bad nerve pain I have been helping a family member who has had some reasonable management with Lyrica for another condition where his nerve endings are firing cos of a lot of local inflammation.
Though he still has break through pain, Lyrica seems to work best for him because he has it with other pain medications that work on different pathways, e.g. even good old regular paracetamol as part of the mix, and sometimes a cool pack, wrapped in cloth to protect the skin. He puts the pack on for a few minutes to rest the nerves by giving them a different message. Glad the Amitriptyline is helping, so glad you picked up the Lyrica side effects and your surgeon was able to swap the Amitriptyline in.
Re surgeon on hols, my surgeon helping me with another condition is away till the end of the month. So for me it's check in to my GP tomorrow, I think, just to make sure I am covering everything. Maybe you might want to do that if the pain or nausea and palpitations are a nuisance?
Whales, so rapt you can see them moving!! Years ago on an early Spring hol from Victoria to Merimbula, standing on the ocean beach it was so thrilling to be surprised as a Mumma whale and her bub came into sight, just doing their thing. Here in Melbourne we have dolphins in the Yarra, kinda a good feeling!
Sorry your arm has been so sore and hoping it begins to feel comfier, Jenny
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Thanks @Sister and @Jenny I did have a long consult with my GP yesterday and she was helpful, saying to just use the Panadol and Amiltriptyline so my body has as few drugs in it before I start chemo. That was going to b this Thurs 13/9 but looks like it might b put back a week because I am still in a lot of pain when I use the right arm(my mastectomy and lymph node ops were on the left) where they have placed the portacath just below my collar bone. The Oncology Nurse I just rang said I shouldn't b having pain but it is only 6 days since it was inserted and I think I need another week for it to settle in. I have had to have Panadol every 4 hrs since this insertion, whereas I had dropped most of my daytime ones prior to the portacath op. Has anyone had any experience with this, as I really couldn't stand to have it palpated and a needle inserted into it yet?!0
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Dear Sirrah, I too am sorry you are in this situation - this network is very supportive as I have found out myself only recently. I wish you all the best for your treatment. Stay in touch. Silka xxx0
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The endep should work hopefully in 2 to 3 weeks and sode effect benefits is it can help with sleep. You might not need to stay on it but it might just settle it down. I was in tears from my nerve pain and once it settled I didn't need the other pain relief either and was able to dlowly stop over 2 weeks without issue.1
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Thanks @Bettyboo And @primek. I think the Amitriptyline is starting to work as I don't get so many nerve ends sparking and can lightly touch my arm now. A word of advice to anyone being prescribed either Lyrica or Amitriptyline they were originally used to treat depression and can cause suicidal thoughts, that is why I didn't stay on Lyrica....wondered what it would be like to step in front of a van when I was waiting for it to pass...which is not like me at all! Amitriptyline does have some side effects, however as u take it just before bed and it has a sedative effect I found after the first 2 nights I just sleep through the dry mouth and slight heart palpitations.
Am beginning my 6 mths of chemo today!!!!! First 3 mths of every 3 weeks and then 12 weekly to look forward to. Is that normal? My first 2 drugs administered together are Doxorubicin and Cyclophosphamide and then the weekly drug is Paclitaxel. I don't like the fact that I won't have any weeks to recover between the Paclitaxel. Anyone had experience with this regime?
thanks everyone,
Pauline0 -
Not me Pauline but there are lots here who have. Glad you're starting to feel a bit better, such a relief. Good luck today. The first is the worst. It's the fear of the unknown. You'll get through, and next time you know how your body reacts and you'll be prepared. Deep breaths, Kate xox0
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Hi @Sirrah , hoping your first chemo went ok with no hiccups. I live on Sunshine coast (Kawana Island). Ive just finished radiotherapy 2 days ago so rather burnt and not venturing too far from home until burns heal and i can wear a bra. Happy to meet for cuppa once im out again and your feeling ok.
Your welcome to private message me and ill contact you with my number xx
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hi Sirrah,
I did that regime it is tough going but you can do it girl I am here 6 yrs later cancer free .... take it one day at a time. Tell your team of any unpleasant things that happen and keep drinking to keep hydrated.0 -
The weekly taxol is kinder than the 3 weekly version with less long term side effects such as neuropathy. The effects are accumulative (like fatigue and skin issues) but initially most people are less acutely ill on it as you are with the other regime.0
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Thanks so much everyone! @ kmakm u r so spot on, the fear of the unknown and how painful accessing my portacath were much worse than the actual! I can't believe how good I feel on Day 2 (other than having a saroma drained) and am aware that Day 4 is looming! @SoldierCrab yes, my daughter and husband have been hounding me all day, I can cope with a litre but 2 a day is pushing it! Thanks so much@primek. My oncologist and his education nurse seemed to avoid info on Paclitaxel so I thought it was going to b much worse and also not having the 2 weeks in between to recover worried me. The other reason I am not looking forward to it, is that it will include Christmas and New Year and when I asked to skip a week to go to my nieces wedding the Oncologist I am seeing, said no. The other Oncologist I wanted to use said yes, however she could not supply the cold cap treatment, which I was pleasantly surprised in how well I tolerated it. Just have to see how well the hair hangs in there, haha!!
have a great weekend everyone, bliss out to some good music or take a walk in nature!
@Josephine66. I sent u a message so let me know if u didn't receive it, Pauline1
