Well, I am now 6 months  post SCT, no meds, monthly appts for Zometa and 3 monthly appts for monitoring. Feels very strange not to have two or three appts a week but good to feel well. I still have days when I feel very fatigued if I have overdone it the day before but this gets less as time goes on. I am finding it hard to lose the post SCT…[Read more]

I would have thought blood tests for paraprotien and free light chain levels and a urine test for Bence Jones protiens too.

Kind regards Karen

I would like copies of my Bone Marrow Biopsy reports. Some time ago now I asked what the results were and the Doctor looked at me like “Duh” and said “you have Myeloma”. Well I knew that!!!! I was already on VTD chemo but I know the BMB tells them a lot more. Perhaps I should ask for copies of the reports. I have had two BMB’s, one when the…[Read more]

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 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]

Hi cuilmoss, like Annlynn our insurance is via a bank account with the coop, but my guess is that they would not insure you.
Other option would be to check the Myeloma UK info sheet on travel insurance (its on the Myeloma web site) and contact some of the companies listed there. I have heard good reports of a company called nowicantravel.
Best of…[Read more]

Hiya shellbee, I’m no expert on any of the problems that you mentioned, but my diagnosis was determined from a simple blood test that measured the amount of paraprotien in the blood. Why not tell the GP of your worries re myeloma, ask if it is possible that you could have myeloma and ask for one of those blood tests to be done.
Best of luck, would…[Read more]

Hi Lorraine, sorry that you have had to join us. There is a wealth of knowledge on this forum. Im now 71, was diagnosed 4 years ago, was on the Myeloma X1 trial, had a stem cell transplant, was off all drugs for just over 2 years when I relapsed. the first treatment I had was velcade, thalid, and dex. The thalidomide really laid me very low and…[Read more]

Hi Mike, the main problem I had after the administration of high dose Melphalan was low blood pressure. I hadn’t realised there was a risk of ongoing cardiac problems and don’t recall it being discussed. Mind you there was so much to take in at the time it is quite possible/probable it was as I have been very well looked after throughout this…[Read more]

<p style=”text-align: center;”>Hi Mike, the main problem I had after the administration of high dose Melphalan was low blood pressure. I hadn’t realised there was a risk of ongoing cardiac problems and don’t recall it being discussed. Mind you there was so much to take in at the time it is quite possible/probable it was as I have been very well…[Read more]

Hi Mike, so glad you are starting to feel better but sorry to read you have only achieved a partial response. I hope you will find that involvement in the trial does increase chance of keeping the MM under control.
Very best wishes

Karen

Oh yes, I stopped smoking 35 years ago with the aid of hypnosis, I should go for it again.
In the meantime another pre velcade blood test beckons me for tomorrow, ugh!
Tony F

Hiya Geebee, welcome to the club that no one truthfully wants to join!
I was just reading through the posts and noticed you had posted.
I am not smouldering but am going through the whole process, on my last round of drug treatment prior to a second stem cell transplant.
As you probably know they are a great bunch on here, also many of the guys…[Read more]

Hi Sue, that it.
You know if i was in your position I would still go for the myeloma X1 trial regardless of which combination you get.
My pp reading at the start of my myeloma X1 trial was 44 by the end of the trial it was at 7, so that gave the SCT team a real good base at which to start.
If you can grin and bear the needles it will be worth…[Read more]

Hiya suenev.
I am terrified of needles!!!!!
I was diagnosed 4 years ago with mm, I was randomised and put onto the Myeloma X1 trial. It is an all tablet drug trial, I had a monthly blood test to monitor the pp’s etc. Occasionally when attending clinic an additional blood sample was requested for the trials people to monitor progress. I don’t think…[Read more]