Peripheral neuropathy - chemo side effect

Hello Tweety Pie and welcome to the group from another wife whose husband was diagnosed with stage 4 prostate cancer in July 2020. I have attached a link on peripheral neuropathy which might help.

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/peripheral-neuropathy

One thing I did take from it was that it can take several months for a possible recovery to manifest itself so there is still hope that things will improve for your husband. In the meantime I am wondering whether he might benefit from physiotherapy or some form of complementary therapy such as acupuncture to help speed things up - your GP should be able to refer you. 

I have also picked up that this is affecting his mood and can empathise with this as my husband has times of low mood caused partly by the hormone therapy but also because he suffers from PTSD. Do you think he might benefit from talking to someone -Macmillan have a helpline on 0808 808 00 00 which could be a good starting point and they can also offer a 'buddy' service where he can talk to someone once a week just to check on how he is doing. Also do you have a Maggie's near you which is a drop in centre for anyone affected by cancer and they might help put you in touch with local prostate cancer groups or other help which might be available.

Prostate cancer is very much a couples disease so how are you doing? It is important that you look after yourself as well. My husband had a Pulmonary embolism in February following radiotherapy and is also on anticoagulants so I know what a jolt this is for us partners. At times it feels like a full time job co ordinating all the appointments, getting prescriptions, ensuring he takes the different drugs at the right time, managing mood swings..... that you feel you have little time left for yourself but you do need to have time to do the things that you enjoy just to recharge your batteries.

I expect others will be along with their ideas but if you have any questions then please ask.

Hi Tweety Pie, 

Ditto everything Alwayshooe has said and my husband almost the same. However,  due to other health problems,  he isn't suitable for chemo. 

Something that occurred to me yesterday,  and  it coul help your other half, we have a Revitive machine sat gathering dust. I'm going to start my OH on it as he is struggling to walk. He does suffer from neuropathy too plus lazyitis!!! Apart from hooking him up directly to the mains to encourage him to move  maybe this will work.

If you don't have a machine, perhapd see if you can borrow one from someone   or maybe Ian Botham, if he lives nearby

Joking apart,  it may help and when I've plugged mine in today,  I'll report back any improvements.  

Gina

Hi Gina. On a similar theme, my husband has a TENS machine which we were taught to use by the pain management clinic at our local hospital when we lived in the UK. This morning he had a session with his osteopath who did her work to try and help him with his fatigue along with his normal physio for pain relief - he swears by her but I think it is also psychological as they have a good old natter.

It was also repeat prescription time with the doctor who is repeating the B12 and Vitamin D tests and is talking about B12 injections which might boost energy and mood. She is very pro active so we also walked out of the surgery with a Shingles prescription and a check that he has had his others for COVID, FLU, PNEUMONIA AND RSV.

Let us know how you get on with the Revitive machine.

R also has b12. Makes me laugh because he moans about being so tired all day, and admits it is odd as not done anything.  Then come 10 pm when I am tired and want to go to bed, he comments "isn't it a bit early to go to bed"!!!

Hello Tweety Pie,

Has your husband's hospital team said anything about this or has he seen his GP with it?

I had bad peripheral neuropathy in my feet and hands after chemo for a separate cancer 11 years ago and needed to exercise as part of the recovery process after major surgery. My GP gave me gabapentin first - this worked partly so he added amitriptyline which helped a little more. He then changed this combination to pregabalin plus amitriptyline which worked quite well. After about a year I came off these and the neuropathy was much easier. It doesn't bother me at all now.

The only side effects I experienced was that I could sleep for England.

Apologies if you've already gone through these options, but if not it might be worth consideration?

Derek.

Hi Alwayshope Thanks for your reply. It's good to hear from others in the same boat.  I totally relate, it is a full time job, on top of a full time job and little time to recharge.  He is really struggling with this neuropathy. He seems to have become an old man, hobbling about and his mood can get very low. The hormone treatment is probably affecting that as well. 

Unfortunately my husband isn't keen on talking to other people and making use of online forums or suchlike. I've tried to encourage him and I think it would help but it's his choice at the end of the day. I'm not sure whether there is a Maggie's near us but I will investigate.

I have suggested acupuncture but he is reluctant as he's on blood thinners. I think it would probably be ok but we'd need to check with the doctor first. Bottom line is he's is a bit reluctant to try some alternative options but I will keep encouraging him. 

Thank you very much for your reply and the advice and I hope you and your husband are doing ok. 

My husband is also on blood thinners following a pulmonary embolism so I can understand your caution. His osteopath is well aware of treating people with different conditions and takes these into account, especially with the amount of pressure which she exerts. He also doesn't do forums which means that more falls onto my shoulders.

Hubby's PSA is currently on the rise again so we are looking at our options but were hoping to have a summer without having to go for treatment - we should find out next week if he is advised to have more chemotherapy.

Stay strong and positive.

HiSidsmum Alwayshope Thanks for your replies. I did borrow my mother in laws revitive machine as I thought it might help but he can't use it as he's on blood thinners for a blood clot. Same with a Tens machine which we have as I use it on my back and shoulders. On the plus side I had a go on the revitive and very pleasant it was

We have tried a massage gun on his heel which does provide some temporary relief but I will keep investigating.

I think we need to speak to the GP again to see if there is anything that can boost his energy and mood. 

Many thanks. x 

I think it is about education with all of these 'alternate' therapies and seeking expert advice first. My husband's massage gun is currently having a holiday as we have his pain under control by other means. 

Well thanks for that as I had no idea it should not be used if on blood thinners. Even though he hasn't got a clot that we know of, it is not recommended. So I am glad I replied as I was going to get it down this afternoon and let him lose on it. 

Shame, but might have a go myself as do get some leg pain.

Thanks again.

Gina