[ivanwarwickParticipant]

Hi I'm still on CDT or is it CTD I can never remember anyhow I have been having problems these past few days firstly with a very sore big toe and then with a pain down the same leg when I walk. First I'll tell you about the big toe, it started a couple of days ago after walking about 4 miles or so around shops etc. That evening it started to hurt and it actually turned blue at one point and the pain was hard to take however it subsided after about 30mins. I then found that I was finding it difficullt to walk any distance, anything more than 20 meters would cause me pain like Sciatica, i would need to stop and wait for a about a minute and then I would be able to start walking again for another 20 to 30 meters and the same again. I went to the Dr and he is not sure what it is, he has done some blood tests so will find out the results of that on Wed. I thought the big toe was gout but Dr says no if it was gout it would be the joint not the toe it's self and it is the toe that was sore not the joint.
Has anyone else has a similar experience
Ivan

[eveParticipant]

Hi Ivan
Have you been on the booze ,!!! gout only joking, never heard of it myself,
The pain must be bad for you to come on here and mention it!!!!

You must remember Ivan,that most gp do not know much about mm!!!
Have you not been given numbers to ring for any symptoms !!!!,If you feel so unsure please ring the number,??
Ring tomorrow!!!! might be something very simply,keep smiling :-)eve

[ivanwarwickParticipant]

I do wish I had been drinking, thanks that's a good idea I'll ring tomorrow.
Ivan

[MinParticipant]

Hi Ivan
Look up Peripheral Neuropathy. if your symptoms are identical to a typical PN speak to your healthcare team at the hospital ASAP. The helpline card you should have for evening use will give you access to a Dr who can ansa the questions you have.
Min

[brochoParticipant]

Hi Ivan I agree with Eve your hospital is the best place for answers to this one It could possibly be a side-effect and my advice would be to ring them for any new troubling symptoms rarher than your local gp Good luck let us know how you get on Bridget

[ivanwarwickParticipant]

I did ring the unit today and they told me to go see my GP. I have no evening number to ring, I will ring the myeloma.org.UK nurse tomorrow.

Thanks for all the advice.
Ivan

[eveParticipant]

Hi Ivan
The service for cancer patients seem so different through out Uk'
I have at least 3 telephone numbers and 1 is 24 hr even holidays someone is on call.
When i have used it,I was told to go straight to A&E second time to call ambulance but both times a nurse from the unit met us,and i have been told in future to ring in,the reason for this they can have results of infections within one hour and start treatment straight away,and this is very important!!
At first I made the mistake of calling my doctor out,Slim was confused and just not right,I thought he had an infection,told NO by docter,5 days later in ITU with septic pneumonia,did not have any of the usual symptoms,I just new he was not right!!
False alarm or not I ring number and i must admit even if they told me nothing wrong over phone,if I felt there was I would go to the hospital!!
It nearly cost Slim his life and damaged his lungs,and put his treatment back 7 weeks,
So do not take no for an answer regards Eve

[DaiCroParticipant]

Hi Ivan,

I had a mild form of peripheral neuropathy for 3/4 years before being diagnosed with Myeloma. In the main it was general numbness but I also suffered bouts of pain in my big toe and I was told by my GP that it was a form of gout.

The interesting thing is… when my PN kicks in at night (usually when I'm lying down in bed) I get shooting pains that go right down to my big toe… just like of old. I don't get it while walking… but then again I rarely get to walk very far at all since I started Velcade.

I hope your GP sorts it out for you… we have enough to be getting on with without these side-by-side side-effects.:-S

Dai.

[ivanwarwickParticipant]

I rang the unit and the nurse told me to come on in. The Dr tested me for Sciatica and told me it was not that. She thinks it may be a trapped nerve and the big toe issue was more than likely peripheral neuropathy which can be a side affect of the Thalidomide. She has given me Pregabalin Cap to take twice daily. I can't walk any further than 30 yards before the pain starts down my right leg, it does get so painful that you have to stop. You can relax for about a minute and start again for a another few yards but eventually you will need to sit down for 5 minutes. The Dr is sending me for an MRI scan however as you all know that will take at least 2 weeks. I have had to take time off work which is something I did not want to do this early on.

[eveParticipant]

Hi Ivan
I can understand you not wanting to spend time off work,but at least you are being looked at,have you got a good boss?.
Do not let it get you down,You will find in time,that you become more accustomed to these little hiccups,best that it is dealt with early,
MRI scann will show any bone damage on spine,if you look at some of the other post you,will see how easy it is to brake any bones,so take it easy and if you are on Zometa,or another bone strengthener your bones will improve.
Slims never had peripheral neuropathy,,so cannot advice yot on that,Keep your chin up.Eve

[brochoParticipant]

Hi Ivan I am glad you were seen on the ward it really does make sense for them to see you as they know all the relevant details of your illness and treatment . I can understand you being disappointed having to take time off work but sometimes its the best thing rather than struggling on and making things worse. We have all had these minor blips from time to time and you do learn to take them in your stride . I hope the Pregablin works for you , it worked very well for me within a short time love Bridget x

[eveParticipant]

Hi Ivan
how is your leg doing?????
Eve

[ivanwarwickParticipant]

It looks like it was the small blood vessels on the leg was getting blocked. They increased my clexane injection from 40mg to 150mg and I was told to stop all chemo medication until this leg cleared up. Well the leg did improve, the big toe is still not completely better but they have taken me off CTD and started me on Velcade. Had my first injection on Thursday and all going ok so far. I'm getting it twice a week with 10 steroids on the day of the injection and 10 the day after only.

Ivan

[eveParticipant]

hi Ivan
Worth checking out,blood clots one of the side effects,pity about CDT,Slims on 2 cycle of Velcade,no big side effects(touch wood).
It might seem very small ,(like a sore leg) but do get things checked out.
will not have blood clots in future with Clexane surprised you were on such a low does,you look a big man from photo,goes on weight how much you have,don,t worry about bruising,part and parcel of treatment.
Hope you are still feeling positive,are you back at work?? Eve

[mhnevillParticipant]

Hi Ivan

Do hope Velcade works out for you. My husband has PN because of diabetes and he gets severe pains in his toes. Hope you are getting some relief now.

Best wishes.

Mavis

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