Just a short note to tell you the sad new that my Mum passed away last week following a couple of weeks in hospital. After nine years her myeloma had got to a stage where no further treatment was effective and her light chains had risen signficantly. The end was very peaceful and pain free, she had not suffered with pain at all during…[Read more]

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]

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

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]

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]

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

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

Jill x

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]

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

Jill x

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]

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]

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]

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]

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]

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

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]

Jill xxx

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]

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]

I just wanted to give an update on my Mum’s treatment in case it is of interest. She is 85 and was diagnosed in 2007 (PP 39, LC 10,000) followed by CTD for 10 months after which she had a plateau, she then relapsed and had Velcade for four months, then another fairly quick relapse took her onto Revlimid which didn’t seem to work much for…[Read more]

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]

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]

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]

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]

Thanks for this post – very interesting as I am currently waiting for a call from the Haematology team to go and collect my Mum's next round of Revlimid (with cyclo and dex). They do seem to be taking their time with ordering it – she should have started it on Wednesday this week and I wonder if it is something to do with the information…[Read more]

Jill here, carer for my Mum who has MM and is on the Revlimid regime. She is on her third cycle and doesn't seem too bad now with side effects although she is a bit less lively than usual. However, she is on quite a low dose of everything (she is 84), so maybe you need to talk to your unit about lowering the doses? Also she had more…[Read more]

So sorry to hear about your Dad but glad it was peaceful and that you were able to be with him at the end.

Take care of yourself,

Jillx

My Mum is on Revlimid and the hospital told me flushed cheeks was a common side effect of the drug.

Take care,

Jillx

Glad my post was useful, Velcade didn't work very well for my Mum either. I hope your Dad will get a good result today from the Revlimid, do let us know how he gets on please?

Take care,
Jill

Thanks for the message, read your other messages and glad to hear your Mum is doing OK with all the tablet taking. My Mum starts her third cycle tomorrow, she is doing OK, still has a bit of a tummy upset now and again but I am not sure it is anything to do with the tablets really. She had to have another blood transfusion…[Read more]

Thanks for the update, interesting to hear you take Revlimid at bedtime, do you find that a better time than say, mornings? Mum has been taking hers after breakfast- mainly my doing as I do a chart for her which she follows otherwise she would not manage to take everything – too confusing for an 84 year old 'on drugs'!
Please keep…[Read more]