I think you are supposed to get copies of letter if you want them. The hospital I attend always sends me a copy and I don’t have to ask. Mind you sometimes they arrive three months after the clinic date.

Kind regards

Karen

I agree with above advice to avoid anyone with a known infection. Even in remission your immune system does not get back to full strength. I also find it takes me weeks to get over a simple cold. Don’t risk it.

Kind regards

Karen

Hiya all,

Well here I am as promised posting on my Dex induced sleep deprived night! Though I maybe jumping the gun a bit as it’s not even midnight yet.

Anyway a little update – Last week I was feeling a little under the weather Hmmm more under the weather than normal I guess I should say. Anyway I had a cold and a cough but that’s no big deal…[Read more]

Hi Peter,

if I have ANY problems or worries I call the day unit, or at night the open access number, and let them know I will be shortly paying them a visit as I did last Friday. They encourage us to do that. Luckily I only live 10 – 15 minutes away so it’s no hardship for us.

I hope everything gets sorted out on Tuesday for you Peter.

Every…[Read more]

Hi,

My advice is simple AVOID anyone with any sort of infection it’s not worth the risk. For your information infections are the biggest cause of death amongst myeloma patients.

Every day is a gift.

Andy

Hi,

So sorry to hear about your Mom, but as you say she was very fortunate not to suffer with any myeloma symptoms or bone pain and was able to continue with her daily life at home for a great period of nine years.

I don’t envy you having to clear your mom’s property with all of her personal effects. It’s such an emotional and stressful time…[Read more]

Hi,

Good to read that you are feeling OK after your sct. You are doing well to have the energy and fitness to be playing golf. I think it took me a good six months after my sct before I had sufficient energy to go out. Hopefully your peripheral neuropathy will get better with time. With my present sixth cycles of VCD treatment, I’ve been…[Read more]

Hi there, really sorry to hear about your loss but at 87 your mother most certainly outlived a lot of other people. Time to remember the good times and it’s really good to know that the MM didn’t overall cause her pain or too much discomfort.

All the best for the future

To me it’s a no-brainer. When you’ve got MM, it’s all about self preservation and no matter who it is, if they’ve got any sort of infection, stay away from them!!!!

My family and friends are very good and always stay away if they suspect they have any germs.

There’s always a chance of catching something when you’re out and about but to knowingly…[Read more]

Nice to hear you’re still around and making the most of things. Shame about the 40mg dose, hopefully one day they may be able to reduce it. At least with the sleepless nights we know we will hear from you as that’s when you tend to post.

Richard

Can’t help you with the Marmite craving but when I had my SCT I had a craving for Gingsters Cornish Pasties. I had no chance of getting one as I was still in isolation in a German hospital. It was absolute torture.

Hi,

It’s a tough decision when it’s your grandson. I suppose it depends on whether you think he still has the actual cold virus and whether he is still coughing and sneezing with possible spread of the virus. Since being diagnosed with myeloma, my immunity levels are low and I tend to easily catch a cold virus. I also know it now takes me six…[Read more]

Hi Lorraine,

Well, for a 2nd SCT I think for me it will be done after all other options have been exhausetd. As I said the first one didn’t really working in thjat it reduced my IgG from 36 down to 24. I think the other problem is that whgen they harvest the stemcells, they cannot guarentee they have removed all the affected paraprotein cells so…[Read more]

Hi,

My first investigations, CDT and stem cell transplant in 2010 were all financed via my husband’s employment medical insurance with Aviva. Because we knew little about cancer treatment, I think the restrictions on the policy had gone unnoticed by us until I was starting the different parts of the treatment. The Aviva policy restricted the…[Read more]

Hi Andy,

It’s good to hear that you are OK and managing with your current drug regime. Long may the drugs continue to work for you. I’ve missed reading your updates. Every time I caught a cold virus and also with the shingles virus, my light chains would rise by around 300, but after recovering from the virus the light chains would never drop…[Read more]

Hi Peter,

Sorry to hear that you had to stop taking Pomalidomide. As I said previously it’s a bit of a marmite drug. Hopefully you’ll get along better with the new drug. Is it Farydak you’ll be trying next?

I’m doing ok at the moment thanks. Got a stinking cold at the moment but otherwise ok. We had four nights in the Lakes last week it wore me…[Read more]

Lorraine

Are you on FB. I asked and got replys – you can do a search for UK Myeloma Support Group on Face Book. Michelle posted “What problems is she having Jean? I’ve accepted all the joining requests over the past few days?” Someone else suggested that you ask Ellen Watters who is in Myekoma UK. If you still can’t get on let me know. It is an…[Read more]

Hi Jane

Sorry if I’ve mislead you. Frank smouldered for nearly 7 years and proteins where rising – very slowly – consultant decided to do SCT. In retrospect we think she did it a bit quickly because of his age. In Northern Ireland cutoff for SCT is 70. She started him on CDT. Chemo, Dexter and thalidomide. How long has hubby been smouldering? Is…[Read more]

Hi, I was only 52 years old when I found out that I had myeloma. It’s such a shock to be diagnosed with any form of cancer, but especially one which cannot be cured and requires ongoing treatment. Your sister will most likely need some time to adjust to the whole situation. She will be thinking about so many different factors, which is daunting…[Read more]