Hi Maureen
Hope you and Ian are ok- I’ve just been looking at the clinical trials web site (clinical trials.gov) and it seems to suggest that the early access Daratumumab trial has been extended- it might be worth investigating to see if that is really the case and if Ian is eligible to go in it.
Love Helen

Hi Gerry
Has anyone suggested Pomalidomide? It’s available now? As for trials a distance away- several people I’ve met recently travel 2-3 hours to be in the trial I’m in and others- they don’t seem unduly concerned about it though they do find very tiring
Love Helen

Hi Pam
I have the P53 deletion- as I understand things it means that it’s more difficult to treat and get drug free remissions. I’ve been on almost continuous treatment since diagnosis as a result.
I had a stem cell transplant nearly 6 years ago and was on maintenance revlimid afterwards- most recently I’ve finished pomalidomide after 32…[Read more]

Hi Andy
Kefalonia eh- we still haven’t been to Greece together! I’ve been a few times but Tim isn’t very keen on hot places (redhead!) I think we might look at Italy again later in the year.
I think I’m finding the Daratumumab a bit more difficult- apparently there are very few side effects but I’m getting a few several days afterward- headache,…[Read more]

Hi Sue
I was in complete remission- no mm cells on BMT and zero light chains – this lasted about 6 months then they started to come up above normal again- took a full year after this before I started treatment again.
I too agonised over the decision but I was glad I took it.
One of my friends has been on it now for 5 years and is doing really…[Read more]

Hi Maureen
Hope Ian is still going strong
And Andy – how are you getting on? I keep reading (and enjoying) your tweets ( I’ve forgotten how to do it)
I’m ok with the Daratumumab but the light chains remain around 450 – I’m staying with the trial as stable numbers might be the best I get from it, just got to see what happens. I’m on the…[Read more]

Hi Sue
I was on the same trial back in 2011 and after transplant I was randomised to Revlimid which I took for 15 months until I relapsed. I’ve been on the various other anti myeloma drugs continuously ever since having had no remission at all.
I too had the diarrhoea problems and tiredness as side effects but all very manageable- I went to New…[Read more]

Hello Mike

Did you get the chance to listen to Radio 4’s Food programme today on Tumeric (Curcumin is an extract of the spice Tumeric), which was presented by Sheila Dillon, a myeloma patient and covered turmeric’s culinary use, history and the latest radical findings about turmeric, together with details of a myeloma patient who has taken…[Read more]

Hi Susie

I can understand your concern about whether further treatment is required with your paraprotein levels rising over the past two years. However if you do not appear to have any symptoms or organ compromise or your paraprotein levels are not rapidly rising, then it’s usually normal to be closely monitored without treatment.

It’s often…[Read more]

Hi Avril,

Well done for achieving six years of remission following your stem cell transplant. I can understand your concerns about mucositis which causes so much pain, discomfort and misery, because similar to your experience I also had oral mucositis during my first Sct in 2010. My mouth was full of ulcers, which made speaking, swallowing and…[Read more]

Hi,

You both must be so concerned and anxious at the delay in the date for the SCT. However your husband’s body needs to be free from any virus or infection when he begins the SCT, because the whole process with the high dose chemotherapy can be quite harsh on your body. I was in the same position last year when my second SCT was planned for the…[Read more]

Hi Dawn

During my first cycle of Vcd, I also had a red sunburnt face which then progressed to red spots on my trunk/legs with large amounts of skin peeling off from my hands and feet. My bloods at the end of cycle one showed an infection and I was admitted into hospital for monitoring. Like Teresa’s husband, the antibiotic Co-Trimoxazole was…[Read more]

Hi Sabs – I was never on Carfilzomib, there weren’t any trials available when I needed one! Then it was refused funding- the regular story! Hope your partner gets on ok with the trial.

Hi Jan
I’m sorry to hear you are bogged down with a cold- I’ve been on GCSF and immunoglobulins for the last few months since my second bout of sepsis last year -…[Read more]

Hi Dawn

You are bound to feel upset and down at the moment with everything so new to you and no doubt with so many questions going around in your mind. I still remember the shock, fear and disbelief when I was told I had myeloma on my 53rd birthday in 2010. It’s a very difficult and stressful time. Initially I spent months crying, feeling sad and…[Read more]

Hi Helen

I know what you mean about the length of time it takes to receive your chemo in hospital. When I was visiting hospital twice a week for the Velcade injection, I usually had to wait 2 to 3 hours to receive the injection, which combined with a two hour return journey made the whole day written off for one injection. I believe some…[Read more]

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]

Hi Jan
– your dad sounds like my mum – she’s fitter than me!! At 90 she’s a bit forgetful and arthritic but she can really get a move on when the painkillers are working!
I’m sitting here right now having infusion 2 of cycle 2, no ill effects but it takes all day to get it given! It’s taking longer today as it’s after a bank holiday- why they…[Read more]