Forum Discussion
Chemo deferred due to Neuropathy, mixed emotions
Hi Everyone,
I finished my AC chemo. I had 4 rounds three weeks apart with a few side effects, however I was able to drive myself there and back and felt that I could get through it. I mostly had fatigue, sleeplessness at night, hot feet and hands. The worst for me was the nausea which started immediately, I lost 7 kilo as I didn't enjoy food, both the smell & taste and I had no appetite despite taking steroids.
After a three week break I started on Paclitaxol (spelling?) and I was supposed to have 12 weekly cycles. Again I drove myself there and back to the first five without too much trouble, a bit of neuropathy in my fingers but that usually disappeared in three days.
My 6th cycle was bought forward by one day due to Good Friday and immediately afterwards, I had numbness in both hands and feet, a scary drive home :wink:
The next day it spread to the soles and palms on both sides and also the back of my right leg and right knee. I also started having stabbing pains in my right underarm and a burning pain in my right hip.
After a consultation with my Oncologist he decided to suspend my weekly chemos for two weeks till I see the surgeon on May 7th. They will then decide if I have the surgery sooner or try a different chemo, I guess depending on the neuropathy?
Initially I was disappointed in myself (that I couldn't get through them all), I was quite frustrated and then secretly happy to have a couple of weeks off from the hospital. Now I find myself very weepy as these side effects are not going away and I am worrying if they ever will?
I have no idea what effect the chemo has had on my tumour but both the oncologist and my GP say they can not feel it and I can no longer see it above my skin like before.
What is the next stage? Do I have another scan before surgery to check on the size of the tumour?
I am not sure how I should feel, so much is happening in my life with four other family members dealing with cancers and I feel in a limbo state. At least while I was having the chemo, I could check another one off the list.
Did anyone else experience this frustration? Sorry to go on but I try to keep it inside as my family already has a lot to deal with and I don't want them worrying about me too.
I finished my AC chemo. I had 4 rounds three weeks apart with a few side effects, however I was able to drive myself there and back and felt that I could get through it. I mostly had fatigue, sleeplessness at night, hot feet and hands. The worst for me was the nausea which started immediately, I lost 7 kilo as I didn't enjoy food, both the smell & taste and I had no appetite despite taking steroids.
After a three week break I started on Paclitaxol (spelling?) and I was supposed to have 12 weekly cycles. Again I drove myself there and back to the first five without too much trouble, a bit of neuropathy in my fingers but that usually disappeared in three days.
My 6th cycle was bought forward by one day due to Good Friday and immediately afterwards, I had numbness in both hands and feet, a scary drive home :wink:
The next day it spread to the soles and palms on both sides and also the back of my right leg and right knee. I also started having stabbing pains in my right underarm and a burning pain in my right hip.
After a consultation with my Oncologist he decided to suspend my weekly chemos for two weeks till I see the surgeon on May 7th. They will then decide if I have the surgery sooner or try a different chemo, I guess depending on the neuropathy?
Initially I was disappointed in myself (that I couldn't get through them all), I was quite frustrated and then secretly happy to have a couple of weeks off from the hospital. Now I find myself very weepy as these side effects are not going away and I am worrying if they ever will?
I have no idea what effect the chemo has had on my tumour but both the oncologist and my GP say they can not feel it and I can no longer see it above my skin like before.
What is the next stage? Do I have another scan before surgery to check on the size of the tumour?
I am not sure how I should feel, so much is happening in my life with four other family members dealing with cancers and I feel in a limbo state. At least while I was having the chemo, I could check another one off the list.
Did anyone else experience this frustration? Sorry to go on but I try to keep it inside as my family already has a lot to deal with and I don't want them worrying about me too.
36 Replies
- @Doodoo, thanks so much xx
- @Nefertari I’m exhausted reading what you’ve been through!! You poor girl!! So pleased you have turned it all around. Will be thinking of you on the 24th xx
- @ Sister me too <3
- Wow! What a turnaround for you. So glad you have a team on your side now.
- Irb thanks, yesterday was a long day but yes very worthwhile and I feel more prepared for Surgery next week.
I had the ECG, urine/blood tests etc and saw an amazing nurse in the Pre Admission Clinic, she explained everything!!!
She put it all in writing, drew pictures and answered every concern I had.
If she didn't know the answer or couldn't find any reference to it on my computer file, it seems a lot has not been recorded (why am I not surpised?) then she jotted that question down so we could ask the Surgeon during the consultation.
In the end I only had two questions for the Surgeon :)
A lot of the information given by the training Doctor was irrelevant to my situation, so they understood my confusion.
As it turns out I have been transferred to a female Surgeon, ironically I saw her as a private patient 10 years ago for biopsy's of lots of cysts in both breasts. So that was a win for me as she is wonderful.
I will start another thread about the tests I'm to have on the Surgery day, I am so ignorant haha. I just want to run it past those that have had them done, so much information given yesterday!
Thanks again everyone for answering and helping me through this maze. <3 - @Nefertari Try not to stress too much about the SNB. I've read lots of women here who had little pain, and either way, it's for a short time only. Find a happy place in your mind and stay there for the duration. Yank those big girl undies up to the chin! K xox
- @Nefertari, I only hope you have nothing else like this happen throughout your treatment.
I hope tomorrow goes smoothly - Thanks Primek, I have collected a few ladies along the way from chemo and Oncology clinic and yes we meet up. Its a bit difficult at times juggling all our appointments, sometimes we just have to email and text hahaha
It does help as they are all further along than me on the "journey" so have been able to give me good advice. At times it's overwhelming and a tad scary as I dont like to hear too much, for example I am terrified of the sentinel node thing which is coming up ;)
Sometimes for me its better not knowing if you know what I mean.
Good luck to you, I read your post and I hope that the pain eases. xx - I'm so glad things have been worked out and just horrified at your journey. I am wondering if there is a local breast cancer support group. I couldn't attend one due to the days but I sort of formed my own group of friends I met during chemo. They are there for me in person when I struggle and I have paid it forward of course...picking up newbies along the way who also feel lost in our system...between 2 states and 500k to nearest breast surgeon it can be overwhelming.
It's just a thought. The women I have met will be lifelong friends.
Kath x - Thanks Lovely, that means a lot. :) I have everything crossed for tomorrow's pre admission clinic. I'm hoping I come away with my plan all laid out and a fresh start.
