Hi all - my partner of 36 years has been diagnosed with this awful cancer and is luckily at TM2 - he has been advised to have chemo but has the added complication of having a genetic form of Charcot Marie Tooth disease .CMT can be very adversely affected by chemo - does anyone on here have any experience or info related to this - he is obviously very wary of having a treatment that may affect his mobility even more , especially given the post op risks in someone with less than optimal fitness - I spent the whole day crying down my face sometimes not even knowing it was happening until the tears fell off ...he's in denial ....
Hi Threel
I am sorry that you have not yet had a response to your post but sometimes when there are rarer conditions connected to a cancer diagnosis, it can take a little longer for someone to reply.
I am sorry to hear of your partners diagnosis of oesophageal cancer and that he has been advised to have chemotherapy. It is naturally concerning that he has a condition that can be adversely affected by chemo. Whilst the oncologist is the best person to talk to about the general side effects of FLOT, I wonder if your partner has a consultant connected with his CMT or one that he can be referred to, to talk about the possible effects for him. It may be a case of weighing up risks and benefits and making the best informed decision himself.
I had chemotherapy in 2022 for endometrial cancer and mine was a different regime. Many of the side effects that I had at the time resolved fairly well with medication and support. it was a challenging time but was manageable with support. I do however have some neuropathy that persists.
This link may be somewhere you can get information from.
I have had a quick look on line on some reputable sites and the risks of chemo tend to be related to the type of chemo drug and regime. I know myself that some of my effects were dose related and that these had to be adjusted.
Supporting a loved one with cancer can be a really difficult time and there is another forum that you may find helpful to have a look at.
Cancer carers forum | Macmillan Online Community
I am sorry that I can not provide any more specific information but it may be an idea to give the Support Line a call and talk to one of the nurses about the chemotherapy and also just for some emotional support for yourself.
Jane
Hi Zara
I did a search on the Online community for CMT and unfortunately it did not come up with anything.
I hope that the MDT brings some answers and reassurance.
Jane
