Hi Everyone
I hope you had a good Christmas and a Happy and healthy new year. I had my stem cell transplant in September. Unfortunately, my para proteins have gone from 16, 18 and 22. I go back to hospital Friday for CT pet scan to see if there is any bone disease and then consultant on Monday to see where we go from here. My bones ache and hurt and I still cannot shift the 3 stone I have put on (but may be due to large amounts of Christmas food I have eaten 🙂 Well we have to enjoy ourselves in some way). Pain in feet and numbness in hands due to PN Can anyone let me know how long it lasts after chemo?? Has anyone else seen their PP go up so quickly after SCT? Thanks so much for you all being there. I know I dont post often, but always reading the posts which keep me going. Kay x
Hi Kay, Sorry to hear your SCT did not work as well as it might have. I have PN in my feet; I call it "spongy foot" because that is what it feels like. I don't get any pain with it, it is just there. I have had this from around Jan 10, I am not sure now when it started exactly!
Hi Kay so sorry to hear your sct results are disappointing , I dont have any personal experience that would help but I am sending all the positive vibes I can your way Are you on Zometa or Parmidronate? One of these may help your bone pain which a lot of us have and those pains may not mean anything more sinister is happening just a rather unpleasant aspect of mm . I had pn after Velcade and if I remember right it took about 3 months before it went once I had stopped having Velcade It was a gradual process so fingers crossed yours will start to ease up soon. Good luck with your scan and clinic appointment I really hope you get some good news Love Bridget x
Good luck with the PET scan on Friday… here's hoping that there is no sign of active disease and that your PP's are just playing up a bit and will start settling down soon. As a light chain bod I don't fully appreciate the intricacies of PP's but while the trend is showing a steady increase the increases themselves do not seem very big… when I relapsed my first couple of readings were so-so but then started showing a big difference – I do hope my ignorance is your bliss and that your PP increase is not indicative of failure. Has the option of a maintenance therapy been discussed?
Like others I am disappointed for you that your PP levels are rising. I do hope that Friday brings results that aren't as disappointing as you fear. Let's hope you have a good partial response to your SCT.
Hi Kay,sorry to hear your PP's are on the rise after SCT.
I had my second SCT in Aug 2011 and my PP's at the last count 2wks ago were 2.9 although like you I ache in most places.
Shoulders,neck,upper and lower back,in particular my right hip area is very stiff and aches most of the time but I guess that's MM for you.
I do hope your scan is ok and that you don't need to start the horrible treatment regimes again.
Hi Kay
Sorry to hear you think its,back again,just wishing you good luck for tomorrow,Slims in the same boat except he has never had remission,tomorrow we find out if the second lot of chemo Velcade has worked,I try not to think to far ahead,as we have been here before.
Hope all goes well Kay,best wishers Eve
Hello Kay
so sorry about your PP levels lets hope its just a blip good luck with your scan on friday I will be thinking about you with fingers crossed
Lots of love and (((hugs)) Jo
So sorry your SCT didn't work as well as expected. I understand totally your disappointment because mine didn't either. My PP was 25 after my SCT and I was gutted to say the least. I went on Revlimid 25mg maintenance treatment and after a year I finally reached remission 🙂 I stayed on it for a further 6 months but my Prof took me off it to give my body a rest just for a couple of months…but i'm pleased to say I'm still off it 8 months later and still in remission! 😀
So Kay don't be too despondant, there is HOPE 😉 I wish you well with your scan today, and hoping for good results.
I also get PN mainly in my hands and sometimes in my feet. I've had it since being on Velcade as primary treatment 3yrs ago. I still get aches and pains but not as bad as I used to.
I hope your meeting goes well with your consultant on Monday, please keep us posted.
Thank you all so much for your replies. Lorraine you have given me a lot of hope. Scan went ok. I believe they are thinking about putting me on revlimid but we shall see on Monday love Kay x
I am so sorry that you're having to think about all of this so soon after transplant. I feel terrible that I haven't emailed you recently. I hope that your results on Monday went ok …have you been put on Revlimid…I'm on that and so far things are ok (although I may ask to come off it as I seem to get permanently ill….not how most people are!)
I still have the neuropathy in my feet and it is a little worse since I stopped taking oromorph. I'm just on gabapentin and nortriptylene….my PCT won't allow me to have pregablin despite us taking it further.
I'll try to drop you an email later but wanted to let you know that I'm thinking of you!
daisychain 12 years, 1 month ago.
