Does the neuropathy get worse as the illness progresses?

Hi Too Blue and a warm welcome to the Macmillan Community but so sorry to hear about your diagnosis.

So I can help you better - when you say you have been diagnosed with WM are you talking about Waldenström’s macroglobulinaemia!

Hello Mike,

Thank you for your reply. 

Yes, it’s Waldenstrom’s macroglobulinemia. I understand that it’s a rare condition but I was diagnosed with IgM MGUS for four years, so I knew I would move onto this WM. 

Best wishes,

Too Blue

Hi Too Blue, I've had neuropathy for nearly 3 years, originally in both feet then 2 years later in the hands but less of a problem. I was seeing a neurologist about a different matter and mentioned my PN, not expecting much of a response, as that's pretty much what I'd heard previously, only to be told stimulating the nerves in the hands and feet, something as simple as wiggling your fingers and toes, wrists and ankles, can very often be beneficial in slowing, stopping, even reversing the condition,  I believe mine has been pretty stable these past few months, maybe even slightly better.

Eddie 

Hello eddiel,

Thank you very much for your comment! I found your message very encouraging. Wiggling and moving toes and ankles and hands sound easy enough to do. I’ll see how it goes. 

I sometimes wake up feeling ‘pain is under control’ but sometimes wake up in the middle of the night because of the pain. 

I will try this exercise every day!

Thank you!

Too Blue

Your welcome, my friend, my neurologist put it simply, stimulation is as good as anything when managing PN, he also said regarding the exercises to imagine you have pins and needles, and base your exercises on how you get rid of them, good luck my friend.

Eddi 

Thank you Eddie. Much appreciated. 

Too Blue

Hi again Too Blue …. sorry for the delay in getting back to you but were are actually visiting our 3 granddaughters down in Surrey so it’s full on but heading back home to Inverness for a rest later today 

I don’t have Waldenström’s macroglobulinaemia…… and yes WM is one of the rarer types of the 60 types and sub-types of Lymphoma out there….. 

For some context I was first diagnosed way back in 1999 at 44 with my first rare 8 in a million…… (so it’s in the same rare group as your WM)…,,, incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing skin Low-grade non-Hodgkin lymphoma) …….

Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Peripheral neuropathy (nerve damage) for many people will become worse ‘during’ treatment….. but I cant say that I have heard of people developing Peripheral neuropathy (nerve damage) as PN is actually temporary nerve damage caused by chemotherapy.

But from my long experience and from talking with others with Lymphoma nerve pain resulting in similar PN pain can happen.

I had pain similar-ish to my actual PM….. actually worse - when my growth areas were pressing on nerves resulting in significant pain…… but once treatment started this pain eventually disappeared but was replaced by PM in my hands and feet but this also eventually went away once treatment was completed.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to come and join us in our dedicated…. 

General Non Hodgkin's Lymphoma

…… support group. 

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

Do remember to be specific in if you are having any treatment or are still in the diagnosis process….. this makes a difference to what reply's you will get.

I will keep an eye open for you in the group but happy to chat more on this thread.

I came on here to ask about this! Amazingly found your comment ! I have stage 4 endometrial cancer (womb cancer) but have no womb!! I’ve had four chemotherapy/immunotherapy sessions. The pain in my feet and legs has intensified in the week after my last session! I’m thinking I should mention it to cancer team? Or is it something that we should expect? 

Hi Lindyloo_ I see you have been posting in our Womb (uterus) cancer group so it would be worth putting this question up in that group also.

Yes, you should mention this to your team, there are some types of chemo regimens that can cause PN more than others and in some situations (obviously different across cancer types) that these drugs can be reduced or an alternative used.

In my case there was no reduction option for me….. I had to have the full force of the drugs as these were being used to open the door for my next treatment…,, so lots of walking and using 2 stress balls to work my hands helped to get the blood flowing and helped overcome some of the pain,

Thank you! There always seems to be another “surprise “ in this journey!

I wasn’t sure if walking would make it worse so will persevere ️