Hi All,
Good to hear from some of the regulars again. My Mum is currently 9 years on from original diagnosis and starting treatment. She is nearly 87 but still in reasonable health. She has had the full arsenal of treatment and is now just on a low dose of dex and cyclophosphamide. She has always had a high light chain reading – Light Chains…[Read more]

Hi Helen and Peter,

Glad you found the info on Mum helpful and encouraging. She has done incredibly well and even surprises the doctors.
Mum has had a follow up bone marrow biopsy a couple of years ago but the results were not very useful – she has less than 20% ‘useful’ bone marrow cells but this is not uncommon at the age of 86. It does mean…[Read more]

Helen,

Sorry I should have also said that she had more than 10% myeloma cells in her bone marrow on diagnosis. I don’t think we got a precise number from the consultant.

All the best,

Jill x

Hi Helen,
Sorry for the delay but no problem with giving you Mum’s numbers. When she was diagnosed in 2007 (age 79) her PP was 39 and light chains 10,000. CTD made them reduce to PP 11 and light chains 1,500, they never got much lower than that but it was enough for a plateau as they stalled for about a year or so with no treatment. Next came…[Read more]

Hi Peter,

I may be wrong but I thought it was only called true remission if your PP and LC numbers went to zero, otherwise it is called achieving a plateau. My Mum has only ever achieved a plateau where the numbers have reduced and then stabilised so treatment has stopped for a while – her numbers never got to zero. However, the plateaus have…[Read more]

Hi,

My Mum had a rash when she start pomalidomide – the hospital gave her Piriton and she took that once a day which seemed to do the trick. Took a day or so to settle down once she started the Piriton so hopefully it will work with your husband, if not as Ellen says get the doctor to consider reducing the dose. Mum continued taking the Piriton…[Read more]

Hi Andy,

So pleased to hear you are on the mend, we have all been worrying about you.

Please take it easy and get well soon, there are lots more of those gift days for you to open.

Love, Jillxx

Vicki,

So sorry to hear the news about Colin, thinking of you and sending love,

Jill x

Hi,
Just to add to this debate in case it is of interest – my Mum has often suffered with low neutrophils while on treatment, most recently her neutrophils dropped to 0.3 while on Pomalidomide causing her consultant to stop treatment. Within a week of stopping her neutrophil count rose to 0.9 and now a week further on is at 2.4! She is on no…[Read more]

Hi Andy,

Just to say that at Mum’s consultation it seems that the pomalidomide is not working for her. The hospital have told me that there is no further suitable treatment for her so they will just monitor her bloods. None of us really know how things will develop but her myeloma numbers are currently PP44 and Light Chains 12,000, without any…[Read more]

Hi Andy,

Glad to hear you are doing well. Mum also seems to be doing OK on pomalidomide, not much in the way of side effects after 3 cycles and a small reduction in both PPs and Light chains after one cycle – seeing her consultant on Weds this week so will see how they are doing after another cycle.

Take care,

Jillx

Vicki and Colin,
Many congratulations and love to you both,

Jill x

Hello,
Similar situation but further down the line for my Mum who was diagnosed at age 77, started treatment when she was 79 and has been on various drug regimes for the last seven years, she is now 86. She was also very independent and has done very well although I now do more for her than I used to as she decided to give up driving. She still…[Read more]

Hi Andy,

Just a quick update, Mum has had the first Cycle of Pomalidomide, three days in seemed to develop a bit of a rash but it went after a day or so (hospital gave her some piriton), apart from that she seems OK, just waiting for the blood results to see if she is OK for Cycle 2. Like you I think she finds the worst bit is the dex – but she…[Read more]

Hard to read your message properly but you have to respect your Mum’s decision as SCT is not an easy process although Carol is right that a year of feeling ill is not the norm. The non SCT treatments for MM are improving every day, my Mum is 86, diagnosed with MM seven years ago and is still working her way through the various treatments (she was…[Read more]

Hi Andy,
Thanks for the reply, I was thinking of you when I wrote the email. 17 cycles, wow, you are really getting your money’s worth out of the NHS! Are you on the 4mg dose?
Mum doesn’t have any infections, in fact she hasn’t had any and doesn’t seem prone to them at all so that is why I am wondering about the need for Cotrimoxazole as well as…[Read more]

Hi Roo,

Graeme is right about thalidomide, the problems were for pregnant women but because it is still a controlled drug the patient has to sign a consent form stating they are not of childbearing age! My Mum who is 85 has been on it with cyclophosphamide and dex tablets for nearly a year now, this is her fourth round of treatment since 2007…[Read more]