[robert0439Participant]

Hi to everyone,

I’m currently in my third cycle of chemotherapy prior to a SCT around December, early January if my Paraprotein levels continue to fall as they are doing however, a major current side effect from the Velcade chemotherapy, is that I am experiencing quite severe pain in my thighs, calves and feet which is causing me sleepless nights to say the least. I assume others are in a similar situation but would be interested to hear how they are managing/coping with this?

Thanks in advance.

Regards,

Robert

[alicenorthParticipant]

Hi Robert, I am currently on cycle 6 of VCD, after relapsing.

How wouldcyou describe the pain you are experiencing?

I’ve had pain in the back of both calves and knees intermittently but over the past few weeks, mainly in the back of my right calf and almost permanently. I’ve never thought that it might be peripheral neuropathy though. I assumed it was an issue with my muscles as a result of the steroids. I’ve always assumed that PN was a pins and needles/burning effect in the fingers and toes. I could very well be wrong though.

At times it’s like a cramping pain, other times, a burning pain. Whilst on steroids, I’ve had terrible fluid retention which isn t always helped by diuretics. However, when they do work at getting the fluid off my legs, the pain in my calf definitely improves.

I’ve just started taking a magnesium supplement to see if this helps. Also, recently, throughout the day, I’ve used ‘Biofreeze’ pain relieving roll-on over the affected areas and massage it in. It’s painful to use but it does give some relief, especially at night. Hope this helps!

[robert0439Participant]

Hi Alice,

Thank you for your feedback. To start off with I was on a VTD regimen but suffered so may side effects from the thalidomide they took me off this pretty much straight away and have replaced it with Cyclosphosphamide which I seem to be far more tolerant to. Then came the side effects from the Velcade where I read somewhere that there was a high percentage chance of suffering from PD by taking this. As I was really struggling from the PD where I can only describe this as a feeling where someone is sticking needles in the back of my thighs, calves and my feel like they belong to someone else, they have now put me on Revlimid where again, I seem to be far more tolerant to – apart from really bad constipation that is! The PD has certainly reduced to a far more manageable level, but I am still hoping for a further reduction now that the hospital have changed my regimen. You may find the article regarding PD in the below link of interest:

http://www.oncotherapynetwork.com/hematologic-cancer-targets/managing-bortezomib-induced-neuropathy

I too suffer from fluid retention and at the beginning of certain weeks where I take 40mg of Dexamethasone in one dose, I can quite easily put on around 8-10 pounds during the week however, the following week when I am not taking it, I can lose it just as quickly. My face also blooms and I honestly feel like the “Michelin Man”…

I’ll definitely take a look at the Biofreeze that you mention in the hope that it helps however, now that I am no longer taking Velcade, I am hoping it will reduce further naturally.

Once again, many thanks for your comments and may I wish you well for the future.

Kind regards,

Robert Gale

[janwParticipant]

Hi Robert

I hope your peripheral neuropathy (PN) starts to reduce now that you have stopped Velcade and currently on Revlimid. My PN has certainly improved since my 8 cycles of VCD finished in September 2016, resulting in hardly any symptoms during the summer months of 2017. However my PN appears to be triggered when the weather is cold, where as others have stated their PN symptoms are worse during hot weather. Over the last few months when the temperature has been decreasing, my feet and calves have been tingling, throbbing and painful as though needles are being stuck into the skin.

I’ve been on Fentanyl patches since my myeloma was diagnosed in 2010, together with Tramadol tablets. I’ve found taking additional Tramadol has provided some relief, together with finding ways to warm up my legs such as long hot baths, electric blanket, extra throws, thick bed socks and hot water bottle. My consultant also recommended taking vitamin B6 and B12 on a daily basis.

Lets hope both our PN symptoms reduce further over time.

Kind regards
Jan

[robert0439Participant]

Good Morning Jan,

You timed your post perfectly as this morning I have an appointment at the hospital to see where my Paraprotein levels are, as I have just finished my first round of chemotherapy treatment over the last 4 months which I must admit, has been a very rocky ride to say the least. Still, I have to see it as a means to an end and in an odd way, look forward to my stem cell transplant in Nottingham where hopefully then for a couple of years, I can get my life back.

The change from Velcade to Revlimid certainly made a big difference and together with the pain management drug Gagapentin which they gave me, it pretty much removed the PN in my upper and lower legs however, similar to yourself, I too am still suffering from PN in my feet, ankles and calves perhaps to a worse extent than ever before and exactly the same as you describe.  I am only taking a 900mg dose which I see is very low, so this morning will ask the doctor if I should increase this to a higher dose as I see that others take up to 2700mg on a daily basis.

I also have tried heat pads on my feet, electric blankets, hot baths together with hot water bottles but nothing seems to make any significant difference, so again, I will raise this with the doctor later today.

I have a shot of B12 at my local surgery every 3 months and am due for another one soon, but will also look at B6 too. All will be revealed today from my blood test from last week where I had checks to see if I was also suffering from any vitamin deficiency.

If I may, I will keep you posted but in the meantime, thank you again for  your post and may I wish you good look going forward in the management of your issues.

Kind regards,

Robert

[robert0439Participant]

Hi Jan,

Just thought I would update you on where I am now as you were kind enough to offer me some advice on my issues with PN.

My wife and I yesterday, paid our first visit to Nottingham City Hospital where my stem cell transplant is now tentatively planned for around the beginning of January 2018. Not looking forward to it but what else can we do? Prior to this, I need to have a Hickman line fitted and then, my stem cells harvested and frozen for use later on.

I’m still having awful issues with PN and my feet, where the pain and discomfort seems to be getting far worse which is now affecting my ability to walk any distance. I thought that coming off the Velcade and starting Revlimid may have helped but I cannot see that it has. I have increased my dose of Gabapentin from 900mg per day to 1800mg per day, but this also has not helped. I do have a meeting on Tuesday at my local hospital where I intend to raise this with them and will mention Fentanyl patches and also, Tramadol just to see what they have to say.

Anyway, thanks for listening to me and as always and I hope you are managing well and living life to the fullness of your ability.

Kind regards,

Robert

[janwParticipant]

Hi Robert

I certainly know why you are not looking forward to your second SCT, but hopefully the process will provide you with a good period of remission. I found my second SCT in September 2016 far easier as regards side effects, together with a quicker recovery period afterwards.

I am sorry to hear your peripheral neuropathy is not improving since finishing Velcade and commencing Revlimid. On the Myeloma Beacon and Living with multiple Myeloma Websites, there appears to be other myeloma patients experiencing worsening PN symptoms after using Revlimid. Hopefully your consultant will be able to suggest different pain relief for you to help minimise the symptoms.

My Fentanyl patches and Tramadol were prescribed for bone pain as a result of chronic pain caused by collapsed vertebrae just before myeloma diagnosis in 2010, but they do provide me with relief for the really painful PN. These pain relief drugs do work with my PN, however Fentanyl is an opioid which can create a strong dependancy, with some side effects such as problems with sleeping, skin itching and sweating issues. Over the years I have tried to gradually reduce my Fentanyl dose but have suffered some severe withdrawal effects as a result.

Other myeloma websites suggest other remedies for PN such as accupuncture, a magnesium supplement, Vitamin E, folic acid and a magnesium oil for topical use on your legs and feet.

I hope your consultant can find something which works for you to help relieve the pain from your PN.

Kind regards

Jan

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