Vicki replied to the topic multiple myeloma relapsed – treat with Velcade need your advise in the forum Treatment 10 years, 4 months ago
Hi Rachel
Just caught your question…..yes yes yes get another opinion, there are lots of options talked about. Don’t take no for an answer. Some might not be avaialb win Europe yet but leave no stone unturned. I don’t understand how they can say there are only two options
Go for it and best of luck. Hope your dad is feeling a little…[Read more]
Vicki replied to the topic Update on Mum which might be of interest in the forum Treatment 10 years, 4 months ago
Thanks for this encouraging story gill. Very much hope that your mum is feeling well and continues to improve
Vicki and Colin x
Vicki replied to the topic In Remission ! in the forum Treatment 10 years, 4 months ago
Well done Keith whata great result. You must feel over the moon!
Vicki and Colin x
Vicki replied to the topic Back on the roller coaster in the forum General 10 years, 4 months ago
Hi Andy
Just read how low your pps are…..that’s great isn’t it. Sorry to hear about your back troubles. Keep a close eye on that eh…..Colin and I had stepped outside the mm bubble for a while but it seems his light chains have risen from 110 to 220 so we were told to start mentally preparing! Here we go again!
I so hope your drugs are…[Read more]
Vicki replied to the topic LCDD – LIGHT CHAIN DEPOSITION DISEASE in the forum Newcomers 10 years, 4 months ago
Hi Sharon
My partner Colin was diagnosed with mm in October 2011 with a transplant in November 2012. He has been in remission until June 2014 where his lights chains appear on the increase……we are hoping its a blip.
Having read your posts you do have a really complicated condition but do remain positive. Hard but it’s the only way…..can’t…[Read more]
Vicki replied to the topic We think it's on the way back in the forum General 10 years, 4 months ago
Hi all
Thanks very much for your encouragement. Colin’s light chains started at 31000 so I don’t suppose they would let it go that far! We are still marvelled by the fact that he didn’t have any kidney damage so if there is any luck at all in this we were lucky then!
I’m really heartened to hear of the potential for a blip. Ellen the nurse is…[Read more]
Vicki replied to the topic We think it's on the way back in the forum General 10 years, 4 months ago
Thank you all. All of your posts are very supporting. They in turn have made me encouraged and laugh…..I too must get my big girls pants on! I am not sure now whether Colin’s figures have been on the rise twice in a row or now. The comparison figure we got was something like 110 rising to 220. I’m really hoping it was as a result of Colin having…[Read more]
Vicki started the topic We think it's on the way back in the forum General 10 years, 5 months ago
Hi all,
Consultant visit today. All Colin’s blood normal, pp undetectable, haematologist fine, kidneys fine, calcium fine.
The body blow light chains risen from 120 to 230. The consultant tried to play it down but said he was giving us a shot across the boughs to prepare for the return. See what the next light chain result is and the next…[Read more]
Vicki replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 5 months ago
Hello Keith
Just caught up with this thread. Well done you. Glad to hear you are doing well post sct. The appetite took a long while for Colin. He has since started to eat normally and put on weight. He still gets tired on and off but he’s done well so far.
Hope all going well for you Tom?
Vicki and Colin x
Vicki replied to the topic Hello. in the forum Newcomers 10 years, 5 months ago
Mike
Just wanted to say thanks for the post. My partner Colin was diagnosed in 2011, had sct in November 2012 and has been in complete remission ever since. But I feel nervy as time goes on, as we were told the average remission is 18 months…..it’s always good to hear of someone who gets a long remission. Long may it continue for you. It’s…[Read more]
Vicki replied to the topic confused in the forum General 10 years, 5 months ago
Hi Susan
Just wanted to say I hope your results are good. As Mavis said your pps are low. Our consultant doesn’t say exactly what the results are just that they are ok, long may that continue!, just keep going and if there are things you believe in, carry on 🙂
Vick and Colin xx
Vicki replied to the topic Plasmacytoma in the forum General 10 years, 5 months ago
Ali, hi, just caught up with this post! What a bugger I can’t believe this. Why can’t this mm just stay out of our lives, I’ve had one of those days when I’m having a downer on it…..Colin’s fine but I’m having a what if time. As regards your mum I don’t know what a plasmacytoma is….is that the same as when Colin had a fractured vertebrae at…[Read more]
Vicki replied to the topic Back on the roller coaster in the forum General 10 years, 5 months ago
Hi Helen, and all,
Sorry not tuned in for a while. Been trying to have a bit of normal life…..I thought not tuning in would make the myeloma bubble disappear but it’s always there in the background. Helen I’m so sorry to read that you have relapsed again. This blinking disease has no respect for anyone or anything. I keep reading about…[Read more]
Vicki replied to the topic Good Remission after 5 years- do not give up in the forum Treatment 10 years, 7 months ago
David well done you! That’s great news, your positive attitude is definitely the extra boost that follows the drugs. I truly believe the success stories are the inspiration we all need to keep going …..perhaps also a little vodka? 🙂
Vicki and Colin xx
Vicki replied to the topic Starting treatment tomorrow in the forum Treatment 10 years, 7 months ago
Hi Andrea
Just wishing you all the best with your treatment , positive thought is so important, hard to do but keeps your chin up. Hope all goes well for you
Vicki and Colin xx
Vicki replied to the topic Whoops! Number 3 in the forum Treatment 10 years, 7 months ago
Oh Andy,
Sorry to hear you are going through the mill a bit. This myeloma is such a bugger…..affecting the blood is one thing but when it affects the bones ic completely another and that’s the real low baller of this damn disease. Hope things are starting to improve a but now. How come they didn’t spot the collapse coming?
Hope stephs ok too…[Read more]
Vicki replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 7 months ago
Hey Tom,
Just picked up on the thread, glad you are doing well and feeling ok, there is no doubt about it, you are an inspiration. I will never forget the support that you gave Colin and I when we joined the site and continue to do, for us and all of the fellow cyber friends. Any idea when the next sct is? I might have missed it because I still…[Read more]
Vicki replied to the topic Partial Remission in the forum General 10 years, 7 months ago
Hi all
Jus to chip in on the travel insurance. We insured with nowicantravel. They were great, very sensitive with the questioning and covered the myeloma! We have been back a week now, following two weeks in mauritius. I felt secure as we had good cover for us both! That said I can definitely confirm take the thermometer and antibiotics when…[Read more]
Vicki replied to the topic Hi Eve in the forum General 10 years, 7 months ago
Hi Jo and eve,
Sorry to hear you both (and slim) are having a rough time.myelomas hard but when there are kidney issues as well it must be a real burden! It’s funny how we all float on in life until this Big Bang myeloma rears it’s ugly head…..don’t know bout you but I’ve forgotten what life was like without it!
Hoping that things improve for…[Read more]
Vicki replied to the topic Dad newly diagnosed in the forum Newcomers 10 years, 7 months ago
Hi there
Sorry I have never heard of this either. Good news though that they caught your dad early and they can monitor him 🙂
Vicki and Colin x