Hi Ian

Great news about your progress during your VDT and sct, especially as your side effects appeared minimal. Hopefully your myeloma levels are also good? You sound as though you are recovering well to be undertaking mile walks.

I remember my first infusion of Zometa causing me flu like symptoms with aching bones, but these side effects…[Read more]

Hi Brian and Peter

Brian: Your myeloma levels have certainly reduced significantly following your treatment. You must be so relieved and hopefully they continue to improve in the coming months. My lambda levels were 1900 at the start of VCD in Oct 2015 (all other levels normal) reducing after 8 cycles to the achieved 90% reduction target to…[Read more]

Hi Louishenry

Many thanks for your reply. I”ll certainly discuss again with my Maxillofacial doctor about shaving off the exposed bone growth, but it might have to wait some months to see whether my current bone growth stops, which will also give my immunity levels chance to improve after my recent second sct.

Jan

Hello Louishenry,

I found your post to be very interesting due to the similarities which I am facing with exposed bone growth in my mouth due to Zometa. My maxillofacial consultant is reluctant to remove my exposed bone whilst it is causing no problems, because he feels the bone might be still growing and therefore he would rather wait and…[Read more]

Hi Brian, Peter and Adrian

I completely agree that the side effects of treatment vary depending on the drugs used and everyone reacts in different ways. We all have to individually decide on the best way forward after taking into account all of the available advice and information which we require to make a decision. As you state Brian, it’s a…[Read more]

Hi Sonia

I’m sorry to hear about your husband’s experience with the Maxillofacial clinic and having to wait three months for NHS funding. Hopefully all of his dental work has been successful and he continues to be pain free without any further dental problems.

I’m not sure whether Pamidronate is any different to Zometa as regards the side…[Read more]

Hi Angela, time flies! It got better because last summer I stopped taking Dexy and the Revlimid has been reduced to 10mg. Had an MRT scan last month, bone damage is stable and frankly doesn’t really bother me. I do get increased bone pain in my shoulders if I don’t drink enough or exercise enough, I have a season ticket for the local pool but I’ve…[Read more]

Hi Brian

Since it’s been a little while since your posts, therefore I’m not sure whether you have since changed your treatment to Vtd or whether you have made a decision about a sct.

I was diagnosed in 2010 aged 53 and went through 4 cycles of cdt followed by a sct. I didn’t question the treatment plan, because I found the diagnosis as a…[Read more]

After a successful sct in 2010, I started on monthly zometa a year afterwards and was still on the drug in 2015 when I found a small hard lump under my upper palette. The dentist suspected a floating piece of tooth, but a scan revealed a bone growth underneath the palette skin alongside two of my upper molars. Zometa was thought to be the cause…[Read more]

Hi Michael,

I have heard of necrosis of the jaw as a complication of Zometa. I do hope this isn’t the case for you.

I have been in cr since August 2015 following a SCT and have Zometa every month. I wondered what symptoms you experienced.

I know that Myeloma doesn’t like Zometa but having been on it for two years I wonder about whether to carry…[Read more]

Evening, Myeloma UK produce a leaflet listing many insurance companies that offer travel insurance, I guess you can access through this site.

regards Tony F

Hi all.

Unfortunately when the forum was changed a few years ago it was virtually unusable for quite a few members. Messages wouldn’t post the kept disappearing and there was logging in problems too. These problems took time to resolve and by the time they were resolved an awful lot of members had move on to the Facebook group.

I agree with…[Read more]

Hi Paul

Welcome to the Myeloma club. I’m sorry you are joining us as myeloma is such a horrible disease. I hope the biopsy went ok and wasn’t too painful. I’m due one in the New Year.

The first thing you’ll notice is that no two patients have the same journey treatment and outcomes are very much an individual thing. There’s nothing much I can…[Read more]

Hi Scooby.

I was prescribed tramadol by my GP for my spasms.

Every day is a gift.

Andy

Hi Chris, I’ve recently completed the max 8 cycles of VCD followed by my second sct in September 2016. I tolerated the Velcade well. My nausea seems linked to cyclophosphamide rather than velcade. However I did suffer peripheral neuropathy in both of my feet and legs after cycle one, therefore the doseage of velcade was reduced slightly from…[Read more]

Hi Finn,

I don’t know what is available to me till I see my consultant on Thursday. The discussion with my specialist nurse was just a bit of speculation. I’ve only had a response from two drugs to date, Revlimid and Pomalidomide, nothing else has worked for me.

Hi Jan,

My scalp is healing nicely thanks. Though my thigh where they took the…[Read more]

Hi Andy

I thought your newspaper article was good and certainly helped raise awareness of myeloma. I hope your recent operations on your head have managed to remove the necessary suspicious areas and that your scalp has recovered well. Have all your results come back OK? You were on my mind when my 97 year old dad spent three hours last week at…[Read more]

Hi Helen,
It’s so good to hear from you and read that your myeloma is still under control with your current drug regime. Long may this continue. With yours and Andy’s good experiences of pomalidomide, I was really pleased to learn the drug has now been approved by NICE. It seemed so unfair that it was available in Wales and Scotland but not…[Read more]

Donna I was shocked and saddened to read about your mum Gill. She was truly a lovely, sympathetic women who was alway supportive. I Loved to read about trips to France and the dogs. I always remember Gill replying to a post on advice for travel advice and she answered “Stephen says he’s not going to wake up in the morning with an acute case of…[Read more]