Chemotherapy

Hello Love to walk

I am sorry to hear that you have had such an extreme reaction to the paclitaxel and have had neuropathic pain. 

I was the same after my first cycle. For my following cycles they reduced the paclitaxel element at each one until I was on 50% dose for the last one. I also had carboplatin that remained the same throughout. The consultant confirmed it was the paclitaxel that was the issue. 

From my first chemo I had a similar experience to you- pain, tingling, numbness etc. I do not want to worry you but for me it continued despite the dose reduction. A year after chemo finished I was prescribed amitriptyline for the pain but although it did help, I didn't like the side effects so stopped. I am currently on the 12 week checks and side effects are monitored at these. I am a year post treatment and do have some lingering effects from both the chemo and radio but they are manageable.

It is a decision only you can make. I also had a grade 3 and they can behave more aggressively and recur. Looking back, knowing what I know now I would still have done the chemo. The peripheral neuropathy to me is not as bad as the fear of a recurrence. Through going through both the radiotherapy and chemo makes me feel that I have done everything possible to reduce the risk of it coming back and if it does I won't be thinking "what if" etc.

Does you chemo include carboplatin? Most ladies on here seem to have carboplatin alongside the paclitaxel. I remember my consultant saying to me that the carboplatin was like the cake and doing all the hard work and that the paclitaxel was like the icing on the cake. I wonder whether it would be an option to just have the carboplatin. I have seen other ladies on here who have done this. 

You most definitely are not letting anyone down and must do what is right for you, but just make sure you have all the information you need to make the decision. When my paclitaxel dose was reduced- I did have far less side effects. It still wasn't great but it did feel a lot more manageable. 

I hope this helps a bit but please feel free to ask if there is anything else that would help. 

Jane 

Thank you Jane. I think in my case the fear of further treatments and possible permanent neuropathy is far greater than the fear that there's a small chance it might recur. I'm very much a here and now person and even though the CNS said there was a possibility they could just give the Carboplatin, the side effects of that are the same as the Paclitaxel. Really appreciate you taking the time to reply. As you say, it's my body, so can only be my decision.

One thing you could consider asking them- It was a question I asked- was if it does recur- what treatment would be offered then? Also is it a decision that needs to be made straight away ie; could it be offered at a later date if you changed your mind? What monitoring would you have if you stop treatment? For me it is 12 weekly checks. 

I did speak with my consultant about potential neuropathy before the chemo started as I play the piano and other musical instruments and I was scared that it would stop me playing. I believe that the neuropathy started pretty much a few days after the first chemo and then remained. It doesn't for everyone but they can't predict it. 

I wish you well whatever you decide, good luck. 

Jane

Hi Love to Walk , my situations sounds very much the same as yours, with bad reaction to Paclitaxel after first treatment. and I chose to stop further treatment as I just couldn't cope with the pain, I don't recall being offered the option to reduce the dose, but my oncologist agreed with the decision to stop as surgery was a success. I am now 2 years post op and feel fine, I lost all my long hair within a week of the first dose so had an idea straight away that it was a very strong cocktail ! I had a spell of severe cramp for quite a while but that has now eased, and I had some breathing difficulties in the early days and even a level of incontinence and that too has improved and my eyesight deteriorated a little. All in all considering the trauma of the diagnosis and immediate aftermath I feel I am doing really well, I think it was the right decision for me, but like others have said only you can decide for you, and you shouldn't feel that your letting anyone down. I wish you lots of luck whichever path you take .....Onwards and Upwards...... x

Thank you Nanny Janet. It is good to hearnyour perspective and I am so pleased 2 years on, you're fine. I think my mind is made up. Whondid you contact to ask for termination of treatment and cancellation of appointments? Was it your CNS? Thought I was just being a wimp, but hearing your story is so helpful and reassuring that I am not the only one giving up!x

Hi Nanny Janet. Did you have radiotherapy as well as the 1 chemo treatment?

Hi Love to Walk

I had stage 1 endometrial cancer and successful surgery followed by radiotherapy - but I wish I had also been offered chemo as now - 5 years later, I have secondary lung cancer with a very significant lesion in on lung and smaller nodes in my other lung.  You can't know how things will turn out and the decision is yours to take but chemo is now my only hope.