[gillhoganParticipant]

Hi.
6 weeks ago my 49yr old husband was diagnosed with MM. Needless to say we have experienced a wide range of emotions and are now "getting on with it". He is on thalidomide and cyclophosphamide . He is on his 2nd cycle of chemo (no break) and due to start 3rd cycle next week. He gets so tired and weak- I know this is normal but its really difficult as I dont know how to help him. Feel completely useless sometimes!
He says his feet get "heavy and cold". Have purchased lots of socks but to no avail.
Any advice , words of wisdom or comments would be massively appreciated!!
Gill and Dave xxxxx

[tomParticipant]

Hi Gill and Dave

A warm welcome to the forum, sorry you had to.

Well If I remember correctly those first weeks/months were a whirlwind, plzd ur getting down and on with it as its the only way am afraid.

I was on CTD then had SCT all in December 2009 and doing well now so its worth it 😀
Heavy feet? well Gill ate Daves feet/ankles swollen it might be PN he is starting to suffer?? if he is getting swollen feet/ankles get some socks with loos tops Ie no elastic in them. Tired and weak is part of it also we all just have to alter to a degree on what and how much we do, I would say Dave is take it easy and dont rush your body wil tell you to slow down, and listen to it, all work and things can and will wait.

Good Luck in your road to remission.

Love Tom "Onwards and Upwards" xx

[PeterJamesParticipant]

Hi Gill & Dave
Welcome to this very exclusive club you really did not want to join, membership is free !
I have just one week of my 18 weeks of CTD chemo, not had to many problems
As I am a lot older than you the steroids get rid of arthritus & give me a big lift , others have different or worse side effects
My feet are cold & a bit pins & needles , but so what, it's the end result that matters , so stuff the side effects
Steroids make you very weak & down after the four days iam on ,twice per three week cycle
Only use this web site or the USA one, the net will turn you grey !
Learn all you can , take questions to the consultant, ask lots. Knowledge is power
You are not useless , you have come to this site, my Wife has the same thoughts & I know She worries over me, but She has been a superb support along with family & friends, you do need your support structure
You need to be totally positive & focused
You do not say if Dave has any bone damage or other problems or what his pp is, coming down I hope
Mine started at 42 now. 4 with one more test to go, then SCT at Christies in Jan l I hope
You will get masses of advice & thoughts from many other people on this site , which I find is helpful & good company, when you have a rare cancer
All the best
Peter

[meganjaneParticipant]

Hi Gill and Dave,

I am so sorry you have had to join us but you have come to the right place, this forum is very helpful and informative. My husband Phil was diagnosed with MM in May this year at the age of 43. There is a lot to take in and it all feels like an out of control roller coaster at the start but it does get easier. Phil has just finished 6 cycles of dex-dox-velcade and we are now getting ready for Phil's stem cell harvest at the end of the month. During the last cycle Phil started to experience the cold heavy feet problem. His last two doses of velcade were reduced but his poor feet are still cold. I posted a query about this under the Side Effects forum entitled Velcade and Cold Feet if you would like to read the responses. The general consensus was it is an annoying side effect. Phil is also feeling very tired so I try and encourage him to nap as much as possible. I think if your body is asking for sleep you need to sleep.

I know what you mean about feeling useless but just keep doing what you are doing. Please ask any questions you have as I have found everyone on this forum very helpful and someone is bound to have an answer.

Megan

[PerkymiteParticipant]

A warm Welcome Gill.

The others have giving good advice, especially about not surfing the net for answers. This site and MacMillan have all the UP-TO-DATE information you will ever need.

I was diagnosed in Jul 2009 at the ripe old age of 69. I have had my Stem Cell Transfer and I am fit and well but I still suffer from cold feet, not just the feet more below the knee. Light bed socks help and as Tom says not elasticised.

I wish you and Dave all the very best of luck. The tunnel can get pretty dark but if you look real hard you will see a light at the other end ? and, no, it is not a train coming the other way:-D

kindest regards – vasbyte

David

[VickiParticipant]

Hi Gill

Just wanted to add some support here. My partner Colin was diagnosed in October 2011 with one fracture to the T12 vertebrae,and off the richter scale light chains!, and a lower number paraprotein score. We were absolutely dumb struck as he had always been fit and healthy- even that year he had been ski-ing, golfing and we had two weeks in mexico kyaking, scuba diving etc.

Colins induction treatment was cyclophomasahide, dexamthazone ad revlimid. He had 7 cycles. He was very tired throughout, had sveral infections and it was a real mental battle. Not trying to pain a grim picture but trying to explain that it will be worth it. He started his transplant yesterday. It is a long hard road and each person is different, try making a note of symtoms etc so that each month you can discuss with your consultant. If we can be of any help at all please ask!

Vicki

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