Hi Sandra

Have a look under the side effects section on this site, because there is a recent post under the heading of Zometa flu with 33 contributions relating to this issue which you and your mom should find informative and useful.

On my initial Zometa infusion, I certainly felt ill several days later with increased bone pain, fever and…[Read more]

Hi Ann

It is strange, yet comforting, that we all experience so many similar situations with myeloma. My husband also arranged a spread sheet for each cycle of tablets. We now have a graph to monitor my light chain levels! But the most useful gift which I was given by my mom was an A5 pill box in which I could place a week's supply of tablets…[Read more]

Only since my shock diagnosis of myeloma three years ago, I've realised that I have needed to talk about the elephant in the room in order to ensure my partner knows my thoughts about my wishes. However, it's not just one conversation, but an on going series of little discussions and comments

I must admit most of the discussions have come…[Read more]

Hi Mandy

It is totally understandable you are feeling anxious with panic attacks.
You have been through a lot of complications as a result of your myeloma treatment and you are now facing more major treatment with your SCT and Kyphoplasty. It is such a shock when you are diagnosed with myeloma, but it is also emotionally hard to go through so…[Read more]

Hi Helen

I'm really sorry to hear your myeloma has relapsed. It's no wonder your emotions are all over the place, it's completely understandable.

I think it was very fortunate your consultant recommended a bmb otherwise any abnormalities of cells would not have been identified so early. At least with you quickly changing your treatment…[Read more]

Afternoon Ann

I would phone up your support myeloma nurse at your hospital to discuss your current treatment. Ask when the cyclophosphamide part of your CTD regime will begin, when you are scheduled to take your second bisphosphonate and at the same time you could ask whether there are going to be other drugs introduced into your cycles such…[Read more]

Hi Ann

Good news about your MRI scan results showing damage to only one vertebra. Hopefully you will be able to sleep better when the bones start to heal.

You mention you are on CTD treatment and say you are taking thalidomide and dex steroids, but you do not mention the cyclophosphamide drug which is the initial chemotherapy part of the…[Read more]

Hi Ann

I hope your appointment with your consultant goes well this week and you learn the results of your MRI as well as asking the many questions which no doubt you have thought about since your last visit. As regards planning lots of family events this year, before you actually book anything in advance, I would see whether you possibly…[Read more]

Hi Maureen

I'm not sure what normal levels of Kappa/Lambda light chains should be for myeloma patients. All I know is that the cancer treatment aims to reduce the light chains to as low as possible. Mine were reduced from 2,200 to 45 after treatment which were considered to be good, so Ian's results at 52 also look good. What were they before…[Read more]

Hi Ann

Yes, my vertebrae collapsed whilst I was asleep but I didn't feel a thing until I woke up. I lost 3" in height and as a result have a hump in the top of my back. It took me ages to get used of my reduced height. I've shrunk to 5'1" and my one son is 6'2" – he now looks so tall next to me. Like you, I went to A&E the week prior to my…[Read more]

Hi Nikki

I was unable to eat anything and drink very little following my SCT for a good ten days due to constant feeling of nausea, actual sickness, sore/dry mouth which all combined together causing a complete loss of appetite. Even with three different types of anti sickness drugs the nausea wouldn't subside and food/water wouldn't stay…[Read more]

Hi Maureen

I'm so pleased to read your husband's light chains have reduced to a low level. My CDT and SCT were covered with my husband's private medical insurance provided via his long term employer. The actual insurance cover was with Aviva. They were very good at covering all of the bills for my initial treatment.

However, when I had…[Read more]

Hi Anne
I was diagnosed on my birthday aged 53. For the previous 12 years, I had been running my own successful business which employed 25 part time staff. My health up to my diagnosis had been OK with just a few colds and a few strange pains. However, I went to bed one night and couldn't move in the morning, or for the next week, with three…[Read more]

Hi Dai

I have just looked up the other trial mentioned on this sites myeloma home page, where it mentions the new ENDEAVOUR trial which appears to be the same as the upcoming MUK five trial offering Carflizomb + Dex v Velcade + Dex.

You would need to read through all of the eligibility criteria for the Endeavour trial because it appears to…[Read more]

Dear Dai

I have just been reading on this site's myeloma home page the summary from the 14th International Myeloma workshop, held in Japan, which states how Pomalyst is effective for relapsed and refractory myeloma patients who have been through a number of treatments – which I am sure you know quite a bit about this new drug.

Apparently…[Read more]

Hi Debs

One of my main symptoms before being diagnosed with myeloma at aged 52 was flushed cheeks, sweating and hot flushes on the upper part of my body. When we went to Majorca the year prior to my diagnosis of myeloma, the icy air conditioning in the hotel was a complete bonus for me but my family were sleeping under many blankets to keep…[Read more]

Dear Dai,

I am so sorry to hear about your current situation. It's certainly a serious issue which will no doubt face a lot more of us when we have tried various different types of treatments for myeloma. It must be a considerably anxious, stressful and worrying period for both of you as well as your close family. I would also feel angry and…[Read more]

Hi Gill

I lost my mom almost a year ago to acute myeloid leukaemia (AML). She was unexpectedly admitted to hospital with a high white cell count and diagnosed immediately with AML. Unfortunately, she died ten days later due to a fungal and viral infection in her lungs. She was treated on the same ward/same hospital as my myeloma treatment…[Read more]

Hi Lesley

During my chemo, I stopped colouring my hair basically because like you I was so tired and had back pain from my collapsed vertebra. I wish someone had told me to get a haircut asap during cycle 1 or 2 before any possible side effects from the drugs kicked in. I had so many hot flushes and night sweats during treatment that my hair…[Read more]

Hi Eve,

Many thanks for the welcome to the site.

When I was searching for information on the MUK 5 and 6 trials, I found no specific mention of the inclusion criteria requiring participants to have taken Revlimind prior to these trials, but they did specify the maximum number of previous treatments in their inclusion critera, presumably…[Read more]