Hello, my first ever post... struggling with neuropathy, pains and being at home

Ajay 2 hours ago

2 replies
46 subscribers
83 views

It's taken me sometime to express this as I was not sure if anyone would be interested.

I was diagnosed with multiple myloma a year ago.i am a 52 year old male who use to work as a support worker and go the the gym days a week.into Xbox, liquid drum and bass and sci fi movies and shows.

Since a tumor broke my back I was then diagnosed with multiple myeloma cancer. In Oct 2025..it's completely changed my life. I have been signed off work under ill health permanently, on benefits, pensions and life assurance are in the process of ill health grounds.it been a year of struggles, strength and pain.

I had dara chemo first which did not work then 2 lots of intensive chemo as it returned so aggressively. I got neuropathy in my legs, hands,fringer tips and feet.side effects from chemo.

I then had 2 tandem stem cell transplants this year and am in my 5 month of recovery..just when I thought I had finished for a while

They have put me on this ongoing cancer treatment Pomalidomide and Dexamethasone
Belantamab. Indefinitely..

My neuropathy that had slightly gone away has now returned due to side effects and my eyes are very sore and I struggle seeing long distances. Every day I wake up there is always something new like a mouth sore or a leg ache etc

it driving me nuts I got a really supportive wife and two cats and a house so I can't complain.

It's just my family since I come out of hospital are not showinging much interest and have not even bothered to asked about.biopsy results which I stated I was anxious about to them..I have to keep them at arms length

The freaking AI is more supportive then them

If I can help anyone with my experiences I happy to do this.

If it was not for my wife I am not sure if I would want a life like this.

It's so tough being at home, I recently got a cold because my treatment knocks my immune system down.

So now I feel anxious about going out again.

Sorry for the rambling.

My biopsy results came back clear..

Jom74 54 minutes ago

Hi Ajay

Welcome to the Forum.

I hear how this last year has been horrendous for you and how your life has changed completely and this has been a shock. Whilst I can’t comment on treatment because I am older and receiving different treatment, I feel sure that those with similar experiences will respond. I can, however, identify with the shock at hearing that treatment is long term and that side effects can be brutal.

Please don’t ever think that you, “can’t complain”. You complain away as this a safe space to do that and you won’t be criticised for doing so.

Great news that your biopsy was clear.

Hang in there.

Vespa 35 minutes ago

Hi Ajay, Kevin here, AKA Vespa, first you are not alone, as Jom74 as indicated we are all different, i am Male 69 and 2.5 years post Auto Stem cell transplant, to go through this twice in quick succession is brutal, some of the meds you mention i have heard of, and the new ones coming on line are ground breaking for 2nd line MM Relapse, i attended a Myleoma charity info day recently in Birmingham, sharing stories experience with other patients was great, but sad also, some of the amazing Haemotlogoisit present spoke about the great things under trial right now, i learned that, the trials now are what pave the way for future patients to gain from, as we have gained from previous trials and approvals, i have to say Neuropathy is my nemesis, every day, and the pain even with Pregablin, can be eye watering, and disabilatating, like you my wife and immediate family have been brilliant, i try to live the " New normal" and take joy in the little victories, looking after you health when in a low level of immunity is very very important, and protect yourself from these things. they are harder for us to recover from. i am glad you posted, and please be assured we listen, we dont judge, we are living with this also. i wish you a good day, and keep us posted, some great people on here ! Kevin

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