[babyjueParticipant]

Hi, I’m new here and struggling lately so needed to reach out and find people who would understand and could possibly help. My dad was diagnosed with MM in May this year. He has undergone 4 cycles of VTD and is waiting to see if he can have a SCT. He is suffering so badly with peripheral neuropathy that they stopped his treatment at 4 cycles instead of the 5 they were going to do as they said his levels are really low so he could finish early. That was about 4/5 weeks ago. His neuropathy is no better. His doctor prescribed pregabalin and that has made no difference, if anything he feels it’s getting worse. They have now given him gabapentin to try and along side this he is taking vitamin B12 and vitamin D. Nothing seems to be working. We have bought some cream with capiscum in and have a tens machine also. I have researched everything and bought anything I can to help dad, to no avail. He is now so very low and saying “just put me in a box” as he can’t cope any longer. Is there anything else we can try to help him as he is in a lot of pain. Thankyou all so much for listening.

[robert0439Participant]

Hi and Good Morning,
Sorry to hear that your Dad is suffering as he is.

I have been and still am to some extent, in the same boat so to speak. I am nearly 3 years on since I had my SCT and feeling better than ever as I am still in full remission with no sign of my paraproteins coming back.

My main issue however, is peripheral neuropathy which was in my hands but has now subsided however, I still get this in my feet and lower limbs. This is a known and common side effect from the Velcade. I too tried all the drugs that you have mentioned but to no avail. I now take Duloxetine in a morning and at night. It has not cured it by far, but does take the edge off things and enables me to walk and have a bit better life than always struggling with the pain.

I also have an injection of B12 every 12 weeks given to me at my local surgery buy also take a bunch of general vitamins which I believe also help me, but nothing is proven here so maybe this is just the placebo effect but they don’t do me any harm so I continue to take them which includes Theracurmin.

Sorry I don’t have an answer to your Dad’s problems but this is just to let him know that he is not alone as many others are suffering the same issue. With some people it does get better with the passing of time so just tell him to hang on in there and continue to speak with his medical team, as new drugs are coming onto the market all the time.

Kind regards,
Robert

[babyjueParticipant]

Hi Robert,
Thankyou so much for your reply.
I will have a look for a vitamin that contains Theracurmin ( anything is worth a shot!) Can I ask where you got your Duloxetine from? Was it prescribed through your doctor or did you buy it online?
Thanks again Robert as it is nice to speak to someone who knows first hand what it’s like.
Sending warm wishes,
Julie.

[davidainsdaleParticipant]

Hi Julie

Sorry to hear that your dad is suffering with PN. It seems to be quite a common side effect of myeloma treatments. I would certainly agree with Robert above.

The Myeloma UK helpline and your local healthcare team are obviously the first port of call for advice, and there is an advice booklet on this website if you’ve not already seen it.

I have just finished second line treatment of DVd which included 8 cycles of Velcade. The PN flaired up towards the end and carried on for a few months , worse at night time.

Thankfully it has reduced considerably and is little more than a nuisance now. Some tips I picked up from this forum were wearing two or even three pairs of socks in bed, this certainly helped. Also massaging feet and hands with Frankenscence and Myrrh neuropathy oil which you can buy on line from iHerb. Again I found this helpful.

Pre-COVID our local clinic did offer treatment for PN based on massage with oils but this has been suspended temporarily. Something you could enquire about.

Hope this helps and good luck.

David

[robert0439Participant]

Hi Julie,
It’s clear to see from David’s comments that your dad is far from alone with his PN.

To answer your questions, I take “Natural Factors” Theracurmin which I buy online from “Health Monthly” and then 30Mg Duloxetine Mylan but you can get this in different strengths. The Duloxetine is a prescription drug issued to me by my GP.

Anyway, hope this helps and the very best of luck to your dad.

Regards,
Robert

[babyjueParticipant]

Thankyou David and Robert. Your help is gratefully received and much appreciated.
It helps myself and my dad to know we are not alone.
Just got back from Dads and we have tried him with some “tog” socks. ( very padded) He said they instantly made his feet much more comfortable to walk on. ( they were 2.3 tog ones) We have also now purchased 4.8 tog ones ( even thicker) which will arrive tomorrow and he has a new pair of padded slippers too.
Not sure he will be able to take Theracurmin as he is taking Lansoprazole. ( Will check first before purchasing).
I have also purchased the neuropathy oil you mentioned to try. So fingers crossed.
Both dad and myself are feeling much better mentally now. Thankyou both so much.
Your support means the world.
Love to you both,
Julie.

[cazzieParticipant]

Hi ya. I too suffer with PN. I use Frankincense & Myrrh neuropathy rubbing oil. It appears to give some relief for me. Just Google it and see what you think. I am not making any recommendations just making it something else for you may want consider.
Regards
Cazzie.

[cazzieParticipant]

Hi ya. I too suffer with PN. I use Frankincense & Myrrh neuropathy rubbing oil. It appears to give some relief for me. Just Google it and see what you think. I am not making any recommendations just making it something else for you may want consider.
Regards
Cazzie.

[babyjueParticipant]

Cheers Cassie,
I’ve purchased some to try.
If it works, brilliant.
If not at least we tried.
Thankyou all so much x

[rosaryParticipant]

There is some good advice on the ninth update on Scott Meechs Blog ( see link below ) about how he overcame some nasty neuropathy pain – hope this helps and dad can hang on in there

https://scottsmyelomadiary.home.blog/page/2/

[dennisParticipant]

Hi, I started VCD 5 weeks ago and have been having strange weird feelings or kind of everything is an effort has anyone else experienced this type of effect. Also did you report it to the team looking after you???

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