Hi Susie.

We’ve just got home from a fab weekend in Athens. Laughs booze more laughing and yes more booze and now as it’s Tuesday DEX.

Your post reminded me about the cramps I used to get when I was on Revlimid. It was always at the end of the cycles I used to get cramps in my legs, sometimes my hands and my stomach. I know it’s annoying but I…[Read more]

Hi Jeff.

Just returned from a weekend in Athens. Went there as we were invited to a wedding and did a bit of site seeing too. That was a bit painful for my back but the pain was treated with copious amounts of alcohol. Anyway what I meant to say is I had kyphoplasty over a year ago T11 & T12 were operated on. It definitely helped me though I’m…[Read more]

Hi everyone.

Sorry I’m a bit late to this thread. Constipation is a pain in the a*** and a constant companion of myeloma treatment unfortunately. I try to preempt my bunged up days by starting my laxatives before I take the drug that cause the problems though I take Docusate daily anyway.

James I’m not sure you should be trying probiotics as I’m…[Read more]

Hi all.

As something of an “expert” of the side effects of Cyclophosamide, after over 2 years on it, all the above can be laid at it’s door. Taste – forget about it nearly everything tastes metallic! Good for weight loss though. Even beer takes some drinking. My sense of smell went. Nausea – mildly for 3 days post Cyclophosamide. Concentration…[Read more]

Evening Susie.

Yeah I had the infusion over 15 mins. For me the flu type side effects of Zometa were quite mild and it took me a little while to put the two together. Probably due to other side effects bothering me more.

I wouldn’t change anything until you’ve been through a few cycles and then I would only change things if something was really…[Read more]

Hi Susie.

The nauseas I had wasn’t too bad I was never sick or anywhere close to it. I used to start taking my metroclopramide the night before my Cyclophosamide. The runs were sometimes a problem for me also and I was switched to Ondansetron which helped. As you are just beginning your treatment I would expect some problems whilst your body get…[Read more]

Hi Majic.

As Maureen says I’ve been through most treatments with not much success. I only had one dose of DTPace with 4 nights in hospital. I only had one cycle as it was deemed not to have worked which was the same as every other treatment I’d tried up till then. Even trying for an Allo SCT wasn’t possible due to no match being found.

The…[Read more]

Hi Susie.

I was on RCD for 22 cycles the main problem I had was three days of nausea post Cyclophosomide day. The nausea wasn’t too bad or maybe I just got used to it. I too got cramps mainly at the end of each cycle I didn’t take anything for them I just used to stretch them out as I still have to do now with Pomalidomide.

As for Zometa I…[Read more]

Hi All.

Well we survived the trip to the lake district. Got home last Friday picked the dogs up had a cup of tea and something to eat then got in the car and set off to Nottingham for the beer festival. Had a few beers Saturday and came home again Sunday. It was a hectic few days and I think I’m just about recovered. Going to put my feet up for a…[Read more]

Thanks all.

Peter we used to think we were very lucky with our haematology department it’s excellently ran with 24/7 access. The staff are brilliant nothing is too much trouble. We have an active support group raising funds for the unit as do other haematological  disease groups. The ward had all single rooms most with toilet and showers, free…[Read more]

Hi Cupcake70,

Firstly hello and welcome, I do not get on here as much as I would like but it is great and a friendly and very helpful site, quite unique to us!
when I read your post and concerns it took me right back, I am post sct approx 22 month, not all plain sailing but well worth it. Like Wallace I found the Melphalan awful. but since early…[Read more]

Hi all, I too take the Adcal and Zometta, not sure if my blood is checked though. At my zometta seesion this week I was told my sessions are to be changed to every 3 months instead of every 6 weeks. Usher (nurse) said this is good news, I will ask at my next clinic though.

Regards to all

Karen

Hi all.

Many thanks for all the replies.

Today marks another anniversary – Three years ago today Steph and I were married.

It’s been a roller coaster these past 3 years and I don’t know how I would coped without Steph. We’ve managed to get by and fit a few trips in, we’re at the lakes now, sometimes for pleasure and sometimes for health ie the…[Read more]

Hi Tom, sorry to hear this, I hope this next round of treatment achieves a longer remission and few side effects.

Good luck and very best wishes.

Take care

Karen
xx

Thanks everyone.

Every day is a gift

Andy xx

Aye, it is a tricky bugger and no 2 cases are the same, which makes it even more difficult.
Wishing you well.

Karen

Done! Good luck! x