[meganjaneParticipant]

Hi John,

When my husband Phil had his two leg operations last year to fix the MM bone damage he was assessed by the physiotherapists at the hospital before he left and they arranged for a raised toilet seat to be delivered to our house and fitted free of charge before he came home. You could check with the hospital June is in to see if there is anything they can provide.

Megan

[meganjaneParticipant]

Hi John,

I was going to direct you to the same document that Rebecca has mentioned, this is the link:

http://www.myeloma.org.uk/files/2913/3767/6373/Myeloma_Essential_Guide_1_June_2011.pdf

It is very confusing at the start and I still find more than a year since my husband Phil was diagnosed that I do not understand all the results but we now know what to monitor for Phil so we don't worry about all the numbers, just the neutrophils, platlets, HG and Paraproteins in Phil's case. At the hospital where Phil is treated we ask for a print out of his blood results, this helpfully also indicates if a number is high or low, you could ask for a print out as it is easier to monitor things if you have all the details to refer to.

Megan

[meganjaneParticipant]

Hi Tom and Elaine,

That is fantastic news, well done Elaine 😀

Megan

[meganjaneParticipant]

Hi Christine,

Phil and I are doing well thank you. Phil was the same, he reduced his Pregablin from 300mg to 0 and the neuropathy is no worse (and no better!) but he feels better in himself. I still hope it will get better by itself but I guess we will just have to wait and see.

Phil has been feeling more tired again this last week but we think it is the heat wave that is causing it as I am just as tired 🙂

Megan

[meganjaneParticipant]

Welcome home Tom 🙂

As the others have said, rest, recuperate and take it one day at a time.

Megan

[meganjaneParticipant]

Hi Christine,

That is wonderful news, I hope the PP continues to drop and a two month break from the hospital is great!

How is the neuropathy for Chris, did any of the new things he was going to try help?

Enjoy your trip to Paris.

Megan

[meganjaneParticipant]

Hi David,

Phil never tried the Gabapentin as the other two didn't work so it was thought unlikely it would 🙁 Hopefully you have better luck!! The last time we saw the Prof in June was when he told us the two to three months stat but then he realised it was eight months for Phil so he added, for some people it takes longer….

We bought the vitamin B complex at Tesco but you can get it at any supermarket in the vitamin aise, the bottle said it also helps with energy levels so we thought it couldn't hurt!

There is a good leaflet on the site for neuropathy:

http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/peripheral-neuropathy/

It has this to say about vitamins:

Vitamin supplements
Supplements such as vitamin B complex, folic acid, magnesium and alpha-lipoic acid are sometimes
considered helpful in managing the symptoms of neuropathy.
As there is no firm research to support the use of these therapies and supplements, it is essential to
consult a qualified practitioner. You should also talk to your doctor to ensure that the treatments are safe to
use and that they do not interact with any of your other treatments.

I hope you have better luck than Phil with this nasty side effect, keep us posted!

Megan

[meganjaneParticipant]

Hi Tony,

Good luck to Rob in his cycle race and his fundraising efforts, I hope the weather is nice but maybe not as hot as it is now:-D

Megan

[meganjaneParticipant]

Hi David,

Sorry to hear that you have been pulled off the Velcade but it may be for the best (?) if your response has plateaued and there are signs of neuropathy :-/ Hopefully your Doctor will come up with a new plan that will decrease the risk of neuropathy.

My husband Phil also has neuropathy from Velcade, most people find it decreases two to three months after they stop the treatment so hopefully that will be the case for you. There are three drugs that can help: Amitriptyline, Gabapentin or Pregablin. Phil didn't find that the amitriptyline or Pregablin helped but others have had more success. Vitamin B complex may also help, Phil is taking that now.

Phil has been able to continue walking although he has to watch where he is going due to the spongy feet syndrome. Phil also finds it difficult to get to sleep some nights due to a burning sensation but he finds wearing socks to bed helps a little bit.

I hope you had a lovely day at the beach today and that the neuropathy will be a short lived side effect.

Megan

[meganjaneParticipant]

Hi Jean and Frank,

That is wonderful news, enjoy your holiday 🙂

Megan

[meganjaneParticipant]

Hi Christine,

After his six cycles of velcade-dex-dox my husband Phil's legs both became swollen, it was only the top of both legs. They were swollen and red/pink as well. Despite x-rays and scans the doctors could not find a reason for the swelling and it disappeared during his SCT in Dec 2012 and he has not had any swelling since.

Hopefully the same will happen for you :-). Have the doctors ruled out blood clots?

Good luck on the road to your SCT.

Megan

[meganjaneParticipant]

Hi Tom,

Sorry to hear the hotel stay was so short but hopefully all the anti nausea meds continue to help. Fingers crossed it gets better soon.

Megan

[meganjaneParticipant]

Hi Mandy,

Sorry to hear about the heavy legs. I am afraid I can't help as although my husband Phil has neuropathy in his feet he does not describe the discomfort in the same way, his problem is a numb or burning sensation.

Hopefully it is a side effect of something that will resolve itself quickly. Phil did have a strange side effect between the end of his treatment and his SCT – the top (and the top only) of both legs became very swollen. They ran tests, x-rays and scans but never worked out the cause and then it just went away while he was in hospital for the transplant. MM and the drugs seems to cause many unexplained things.

Megan

[meganjaneParticipant]

Hi Trish,

I am so glad they decided against making Peter wait six weeks, roll on Thursday 🙂

Megan

[meganjaneParticipant]

Hi Kim,

You may have already seen it but there is a helpful infosheet on this site about neuropathy:

http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/peripheral-neuropathy/

It has this to say about vitamins:

[b][u]Vitamin supplements[/u][/b]
Supplements such as vitamin B complex, folic acid, magnesium and alpha-lipoic acid are sometimes
considered helpful in managing the symptoms of neuropathy.
As there is no firm research to support the use of these therapies and supplements, it is essential to
consult a qualified practitioner. You should also talk to your doctor to ensure that the treatments are safe to
use and that they do not interact with any of your other treatments.

I hope this helps.

Megan

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