Hi Jeff.

I too suffer from a sore neck from time to time and this I again put down to over doing it a bit and the damage to my spine. I also find I get muscle soreness easily now from doing things I’m not used to now and upsetting my resting muscles – poor things.

Regarding the sweats I get them sometimes but that’s due to the steroids and…[Read more]

Hi Jeff.

I’m not sure how long the benefits last. Though I know one of mine that was operated on has collapsed a bit more but I’m not sure if that’s a fault of the operation or down to the damage caused initially by the myeloma. I’m Still benefiting from the op as the wife says I’m more upright and the pain in my lower back is less. I still have…[Read more]

Hi James.

I’ve been thinking about when you need to be careful or more careful shall I say with what you eat. It’s when your neutrophils are low that’s is when the biggest danger occurs. I was neutrapenic for over 18 months so I was very careful about what I ate and I still are even though my neuts are reasonable. I try and keep risks to the…[Read more]

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]

Robert the article is in the autumn issue of myeloma maters.
Regards
Tony F

Hi all, please don’t take green tea, read the recent issue of the myeloma news. It has an article about green tea and turmeric.
Regards
Tony F

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 John, exactly the same, it’s not there permanently, it comes and goes, usually at its worst prior to a clinic, I put it down to nerves!
Regards
Tony F

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 Chris, sorry that you are here, but it’s the best place to be for encouragement and info, was 67 + when diagnosed, had no bone or kidney problems, went onto the myeloma XI trial, followed by a stem cell transplant. That was 22 moths ago, I am now completely drug free, have no treatment other than a three monthly infusion.
We live life to the…[Read more]

Best of luck cupcake, you can do it? It’s all very scary, really right from the moment you are told that you have myeloma, you just don’t know what to expect.
Parts of the SCT process are unpleasant, for me the worst part was living in isolation for three weeks, but you know it soon passes. I followed Karen into the transplant ward, now I am 21…[Read more]