Hi Dawn

Fortunately most myeloma medications and treatments do not cause hair loss. During my 4 cycles of CDT treatment, my hair remained as usual, but towards the end of my 8 cycles of VCD treatment my normal thick hair did gradually become slightly thinner.

Unfortunately almost the majority of myeloma patients undergoing a stem cell…[Read more]

Hi Dawn

I had 8 cycles of VCD last year prior to my second stem cell transplant. My light chains were 1900 when I relapsed in Oct 2015, but decreased to around 190 by the time end of cycle 8, further reducing to 44 after the transplant in September 2016. For me the hardest part of the VCD treatment was nausea, fatigue, sleepless nights with…[Read more]

I had 26 months remission from my first SCT so when I relapsed I was offered a second SCT. After treatment with my pp,s down to 2 I had the second SCT. Managed it quite well and returned home after 14 days, took a while to recover but am now a year down the line, my pp,s are undetectable, officially in remission, no drugs, no treatment, no…[Read more]

Hi Helen

That’s really good news you have only experienced only a small reaction to your first infusion of Daratumumab and your second infusion wasn’t so bad. It’s always worrying when you start a new treatment because you haven’t a clue as to how your body will react to the drugs and you have to wait for the first few sets of blood tests for…[Read more]

Hi Stephen.

Are you on Pomalidomide or the MUK 8 trial? On Pomalidomide my PPs came down slowly, I think, over the first few cycles. To about 8. Then gradually rose to the mid teens where they hung about for about eighteen months then began to rise again.

When I as on Revlimid nothing had for the first few cycles then they added Cyclophosphamide…[Read more]

Hi,

I am sorry to read about your side effects to the chemotherapy, which unfortunately can seem to take over your daily life and interfere with daily activities. You might find the next few cycles get easier or they could get progressively more difficult. For this reason, I would suggest you keep a weekly diary and write down the days you don’t…[Read more]

Hi Susie, I used to have blood tests once every week for the twice weekly Velcade injections. The blood tests are usually carried out at hospital on the chemo ward just 5 minutes prior to the injection to ensure your levels are all to go ahead with the Velcade injection. All the best. Jan

Jimbow…….you must be very proud of your dad, he is certainly a fighter and he deserves a long remission.

wish him the best of luck, and please keep us up to date.

regards

Tony F

Hope all three of you handle your next round of drugs and that they remain effective. I don’t often comment these days, there are times when I need to escape from Facebook Support and discussion forums and try to break away from the word myeloma. Easier said than done.

Pre myeloma days we lived in Keswick, wonderful times, wonderful area, my…[Read more]

Hi Andy

You’ve done so well on 40 cycles of Pomalidomide which has managed to keep your myeloma under control. I hope the MUK8 trial works just as well for you, with minimal side effects. It’s certainly discouraging news this week that Daratumumab hasn’t been approved by NICE, especially after it was fast tracked in Europe. It’s so frustrating…[Read more]

Hi Helen, Maureen,

Glad to hear  from you. I too are at the end of my Pomalidomide journey. I managed 40 cycles before it was stopped. Bendamustine or a trial was mentioned as my only options. Two trials were mentioned MUK5 and MUK8 unfortunately MUK5 had reached its target number of trialists, I think that was the one you’re on Helen, but I…[Read more]

Hi Brian

It’s so good to see you are coping well with VTD and excellent news that your myeloma light chains have significantly reduced. You must be pleased with the results so far.

Your pins and needles are more than likely to be the start of peripheral neuropathy (PN) as a side effect to Velcade and Thalidomide, which you need to discuss with…[Read more]

Hi Jason,

Because we all react so differently to the various drugs, it is very difficult to predict the actual length of your treatment period or the specific number of treatment cycles you will have to undertake. It all depends on how well you respond to the chemotherapy and your tolerability to the drugs.

My first treatment in 2010 consisted…[Read more]

Hi,

I had my first Sct in August 2010 after four cycles of cyclophosphamide, dexamethasone and thalidomide (Cdt) which gave me a good five years of drug free remission until my first relapse in the autumn of 2015, when I completed 8 cycles of velcade, dexamethasone and cyclophosphamide (Vcd) followed by a second Sct in September 2016.…[Read more]

Hi Susie

If you have a look at the Myeloma News section on this site, there’s an article released on the 23 November 2015 stating Imnovid (Pomalidomide) is now available for myeloma patients in England who have received at least three prior treatments including Velcade and Revlimid, and whose myeloma progressed while taking their last treatment.…[Read more]

Hi Simon, thanks for your message, great job you have! If ever you get to Leicester look me up.

After my first stem cell transplant I was at a really low point, the local cancer centre offered individual relaxation classes, the woman also practiced reiki, after those sessions I was so relaxed about things, amazing. We have just returned from…[Read more]

Hi Simon, I guess that I am a lot older than you. I was scared s******s when I was told that I had myeloma, I had never heard of it before and immediately went home and googled it, that made it even worse, I thought that I would not last the year. But I did, I had stem cell transplant number 1, had 26 months with no drugs and no treatment except…[Read more]

Evening, I managed 26 months from my first SCT. Like your husband I managed the first quite well, though was in for 21 days. I had the second in March 2016, was in solitary for 14 days then off home. I think I managed the second one better than the first, maybe I was aware of what was happening and able to deal with the treatment better, though it…[Read more]

Hi Chris,

I’m sorry to read that you are having to start treatment again after your recent SCT. You’re certainly not expecting too much as regards remission time, because when we all go through treatment we always hope for as long a period as possible before the myeloma becomes active again. Unfortunately the amount of time we remain in…[Read more]