Hi,

Just to echo what everyone has already said, the treatment will be managed according to what is bearable for your Dad without ruining his quality of life. My Mum was diagnosed age 77 and has had several different rounds of treatment over the last seven years (she is now 85) all of which have worked to a greater or lesser extent in keeping…[Read more]

Hi Vicky,

Sorry to hear your news. However, thalidomide is certainly still used and does work well, my Mum has now had it twice, in 2008/9 and for this last year and it is the only thing which seems to work well for her, in combination with Dex and cyclophosphamide. Velcade was not very effective and nor was Revlimid as it made her blood count…[Read more]

Hi Laura,

Another one here – my Mum’s light chains were 10,000 on diagnosis back in 2007 (she was 77) but no bone damage – they have gone up and down with various treatments and at the highest were about 19,000 but currently around 9,000. The concern is about kidney damage but her kidneys are fine – even at 85 so it just shows this is a very…[Read more]

Hi,

Is he taking allopurinol? Reason for asking is that this gave my Mum a terrible rash and she had to stop it, I think quite a few people have this problem.

Seems strange that it would go away while on the Dex if this was causing it.

Hope you get it sorted!

Jill x

Hi,

Sorry to hear about your Mum, please tell us a bit more about her. I am a carer for my Mum who has had myeloma for 7 years and is currently doing well on her latest treatment.

From what I understand there is a possibility of some genetic link but at the moment there is no way of testing for this. I suppose for me the more important…[Read more]

Hi Susie,
Good news on the results, well done! I completely understand your worries about all the drugs you have to take. Do you have some anti sickness tablets to help with the cyclophosphamide? If so make sure you take them the day before as this makes them work best – they damp down the thing (!!) in your brain which causes nausea. My Mum…[Read more]

Hi,
Sorry to hear about your Aunt, but just to say that my Mum is 85 and has been receiving treatment for myeloma for over seven years now and is still doing well. Like Sandie says, although the tablets are scary they can just give a low dose which is effective in reducing symptoms but doesn’t give too many side effects, in fact the steroids can…[Read more]

Dear Eve,
Very sorry to hear your news, thinking of you and sending love,

Jill xxx

Hello Nick,
Welcome to the forum. My Mum is similar to yours in that she was diagnosed at the age of 78 (following the death of my stepfather) and commenced treatment with a number of tablets including steroids. That was 7 years ago and she is still going along OK at the moment, on another round of treatment but is still responding to the drugs…[Read more]

Julie,

I am very sorry to hear about your Mum but glad it was peaceful and her battle is over. I am sure you will remember her in healthier times.

My Mum has also had excellent care from the NHS and despite her advanced age access to all the drugs with no arguments. She is continuing to do well, thank you for your best wishes.

All the best to…[Read more]

Hi,
Just to add that Mum’s consultant says he needs us to get the test two weeks before as the PP and Light Chain testing takes longer, not sure why, maybe because it is a more specialised type of test.
Jill

Jan,
My Mum is under Frimley Park Hospital in Surrey but she has her appointments at a outpatients unit near where she lives which is part of the same PCT. The have a separate blood test unit so her consultant gives us the blood test form at each appointment so we can get it done two weeks before the next one. It means we have an extra trip…[Read more]

Just to pitch in here, in my Mum’s case we have the blood test two weeks before the appointment, then the consultant has all the information ready for the day. He is happy to share the information with us and answers questions I may have. He follows up each appointment with a letter to Mum’s GP, and she gets a copy with the key results included.…[Read more]

Hi Julie,

Sorry to hear that your Mum is struggling, I hope the new regime suits her better. My Mum had Velcade last year for 4 months subcutaneously too but although it reduced the MM levels during the treatment it very quickly returned afterwards. The weekly trips to the hospital were also very difficult for us. She seems to be doing very…[Read more]

Thanks everyone. Mavis – Mum started on 50mg per day of thalidomide and for this cycle it is increasing to 100mg per day. Her doctor said he could reduce this again if she starts having problems with neuropathy – she did have a bit of this before when on thalidomide. However, I think 100mg is still a fairly low dose.
Will let you all know how…[Read more]

Hi Julie,

My Mum was diagnosed after her GP found raised ESR levels in her blood over quite a long period of time during which he gave her Prednisolone as he thought it might be related to arthritis. Interestingly this approach probably did keep the MM under control for a while but he eventually sent her to a specialist who did the various tests…[Read more]

Hi Julie,

My Mum is rather like yours in that she was diagnosed about 7 years ago (when she was 78) and has had three rounds of treatment – CTD which gave her around 3 years remission, followed by Velcade which was only a couple of months remission and then Revlimid which did not suit her and did not work very well either – she got anaemic and…[Read more]

Hi,

I know that 8,000 flc is a very high reading. Mum is monitored every 6 weeks by the consultant who expresses his surprise at the fact that her kidney function has remained perfectly fine. I guess as you say everyone is different. I worry less now than I did at first about the numbers and more about her quality of life as the consultant and…[Read more]

Hi,

Just to throw a spanner in the works – my Mum’s lambda light chains are currently at 8,800, PPs at 40 and her kidney function is fine. Since diagnosis with IgA MM in 2007 her light chains have never been below 1,000 but no problems with her kidneys so far. She is 84 and at the moment off any treatment (since August 2013) as we are ‘watching…[Read more]