Peter, thats a very good question, where do the pp levels have to reach before treatment is triggered.

I had my second SCT in March 2016, pps were undetectable for ages, no drugs no treatment, currently they are at 2.6, consultant didn’t seem that bothered, she says that readings below 5 are unreliable! Come back in 3 months time, with a 6 week…[Read more]

Hi Maureen

A really worrying time for both of you. What were Ian’s light chains when he was originally diagnosed? I just wondered whether they were higher than 5000? I would certainly try to find out more about Ian’s genetic make-up of his myeloma in order to try to determine whether there is any available evidence on Daratumumbab or…[Read more]

Hi,
I would certainly discuss your change of reaction to Zometa with your consultant for their advice as to whether to continue with the treatment in its current format.

When I first received Zometa in 2010, I was hardly given any IV fluids prior or after Zometa which did contribute to certain side effects of dizziness and headache for a two…[Read more]

Sarah, maybe this will help.

Why not contact the myeloma nurses at Myeloma UK.

They are very knowledgeable and understanding.

Best of luck

Tony F

Hi Lizzie

There have been quite a few articles in the press over the summer months about how travel insurance companies are making it more difficult and costly for cancer patients to find suitable cover for their holidays, even when some cancer patients have been in remission for long periods.

I certainly had more difficultly this year finding…[Read more]

Hi Helen.

Well I survived our trip to Belgium without having any major problems. Though I had to go straight to the day unit before going home for my regular appointment. Privigen, blood tests and drugs pick up. I’m now on cycle 4 of MUK 8 the best I can say it’s doing is keeping me stable.

Sorry to read that Daratumumab is not working for you.…[Read more]

Hiya Steve, just read your post, you call yourself leicslad, does that mean you live in Leicestershire. I run the Leicestershire & Rutland  Myeloma Support Group, my email address is:

tony.farquharson@btinternet.com

If I can be of help please email me.

Regards

Tony F

Hi Susie,

as Jan says there is no hard and fast rules about the level of PPs when to restart or start treatment. PPs are only one factor out of several that are taken into account.

I have read posts were a tiny rise in PPs, as little as 0.2, from 1.5 has caused serious problems and I’ve also read posts of patients having well over a reading of…[Read more]

Hiya Helen

I’m doing ok at moment, just returned from a week in Kefalonia, I’ve just started cycle 3 of MUK 8. Not much movement on the PPs front yet. I’m feeling ok though just got the usual UTI that seems to be a constant companion of mine. Hopefully going to Belgium later in the month.

I’m glad that the Daratumuab is seemingly keeping you…[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 Susie, I had 26 months of no treatment, no drugs after my first SCT. My pp’s never really dropped below 2, when I relapsed they climbed very slowly, got to about 8 before treatment was restarted. Pp’s were reduced to around 2 when I had a second SCT.

Hope the above helps.

Tony F

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]

Evening Teresa, did I understand from your initial post that Daves brother died of myeloma? Interesting, I didnt think that this disease ran in families. Sounds to me that your GP was very alert and you were given an early diagnosis. Daves initial treatment seems to have worked well if you are being prepared for a stem cell harvest. Hope that all…[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]