Jeff.

I was on Velcade 18 months ago prior to my SCT and didn’t have any rashes. Since then, over the last month or so I have been getting pain and a rash on my feet and also very dry skin on my Scalp. I discussed both with my consultant who has ruled out any link with MM or it being a dormant side effect of the Velcade. However, having discussed…[Read more]

Really saddened to hear about Scott, as Jane said, his posts seemed upbeat and optimistic. I hope you can manage with the grief and that you will make the most of everything he gave you. After all, you have a life to.

All the best for the future.

Richard

Hi there,
I’ve just had a bout of itchy red marks like small blisters on my feet. They are an indication of Shingles in my case. As for Neuropathy on my feet, I did have that whilst on Velcade but that has all but gone now. As for the schingles, I was given anti viral tablets whilst under treatment and my consultant said if I ever get cold sores…[Read more]

Hi Maureen,

I had my SCT when my IgG was still at 36 I believe. I had 6 courses of Velcade that only managed to drop the PP from 52 down to 36. Because I am in Germany the rule that seems to exist in the NHS that you can’t have an SCT unless your PP is below 10, doesn’t happen here. After a chat with my consultant, she believed that the Velcade…[Read more]

Suggest you talk to the Myeloma Nurses. I’ve spoken to them on several occasions and found them to be so helpful and understanding. Give them a call.

Hi Maureen ,
Good luck with Wednesday, you’ve just got to hang on in there. easier said than done I know.

Richard

perhaps someone put the decimal point in the wrong place

For me, the question wasn’t so much about how soon I could travel but about how quickly my T4 cells recovered post SCT. Apparently. I’m not sure how it works but the T4 cells I believe are the ones that fight a specific type of infection. Before they were happy for me to do anything I had to have a minimum of 200 T4 cells per whatever measurement…[Read more]

Myeloma UK produces a superb book for smnall children that explains about MM and how it affects the body. It’s done as a narrative from a small girl who’s father has MM. Suggest you have a look on the website.

Hi Vicki,

I had Velcade with Cyclophosphomide last year but it only reduced my IgG down to 52 before they decided to stop. It didn’t really work for me and Revlimid was not seen as an option because after having just one course of PAD as the initial chemo, my Liver enzymes went through the roof. The medics were very concerned about Liver damage…[Read more]

Hi there,

I had my SCT last January – 1 year ago tomorrow. Since then my PP’s have been stable at 23. Other indicators show that the MM hasn’t got any worse but they didn’t do a BMB post SCT because I didn’t want it and my Consultant agreed it wouldn’t really tell her anymore than she already knew. So, although no BMB, the course of action is to…[Read more]

Don’t need to thank us, after all you paid into the system long enough and what you paid in helped someone else at their time of need. We just need the youth of today to have more babies so that the cash supply keeps coming. I suppose it’s like a big Pyramid scheme, you need more at the bottom to keep it all going.

Hi there,

I’m afraid what your going through is normal for most families. The Dex causes sleeplessness as well as depression in some people. It really does affect behaviour and causes mood swings. I was very short tempered whilst on it and yet in the middle of the night so high I spent the early hours just writing away silly things or surfing the…[Read more]

Hi Jeffrey.

I go swimming up to 3 times a week. I started during Reha (a German thing where anyone after major illness gets sent to a clinic for rehabilitation). The Physio checked me over and said swimming would be good. Because I have damage to my shoulders she suggested that I swim on my back and do small arm movements. I found after that the…[Read more]

Hi Linda,

first of all, don’t panic. We all started the same way, in panic and fear about what MM is and what it means to your life. Next, step back and take a deep breath. You’ve already done the right thing by finding this website and posting. I assume that you have appointments with the consultanat lined up, write down questions, don’t worry…[Read more]

Hi Rebecca,

I haven’t a clue what generally causes shortness of breath but in my case MM was diagnosed whilst in hospital with a very severe case of Pneumonia. I still have damage to my left lung and so consequently I have reduced lung capacity. The other thing to note is that MM can also affect the Heamoglobin levels in the blood and it’s that…[Read more]

Hi John,
23 for PP isn’t a bad figure and if it comes down even more all the better, I’ve been at 23 since my SCT last January and still doing ok so don’t worry too much over the figure. There are plenty of other indicators that the medics will look at. Like you I am short of breath after climbing stairs etc but strangely enough not after riding…[Read more]

Really sorry to hear about your loss. For all of us sufferers it’s just a matter of time but to have been robbed of any decent life makes it worse. I hope that the pain will improve over time, my best wishes for the future.

Hi there,

Had SCT last January and before that was on VCD. The Velcade gave me neuropothy in my feet. It slowly got worse after the second course but fortunately not in my hands. The Cyclophosphomide didn’t affect me that much I believe but the Dex was the worst. It made me irritable, hyper, unable to sleep. I’m surprised I’m still married. The…[Read more]