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 well on the CTDa treatment at the moment without too much in the way of side effects but she is obviously quite tough to be able to cope with it all.
Let us know how your Mum gets on and all the best to you both,
Love,
Jill
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 she gets on.
Love,
Jill
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 – bone marrow biopsy, full body scan and specific blood tests and then diagnosed MGUS. About a year later it started to develop into full myeloma so he started CTD. Apart from the ESR she didn’t really have any symptoms although her light chains got up to 10,000 at one stage!
All the best,
Jill
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 had to have a few blood transfusions and also had a very low blood count. Mum is now 84 and has been off treatment since August last year with just six weekly monitoring. The fourth type of treatment would be Benadmustine and her consultant decided that would probably do her more harm than good so he decided we would watch and wait. I can honestly say that she is better at the moment in terms of health than I have seen her for the last 6 years, a little frailer of course at her age but much more cheerful and livelier, I think she was depressed during treatment as well as feeling rough. Her consultant says we may have to start some treatment again soon as her MM numbers are increasing but he will only give her a low level of maintenance drug as he wants her to keep the quality of life while controlling the symptoms – an approach I completely agree with and so does she.
So there are other approaches that can be taken rather than yet another different drug – and it sounds like it might be Velcade but there are also different combinations of CTD type drugs which might work as they did earlier.
All the best,
Jill
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 I agree that as long as she is well and enjoying life without symptoms then at 84 she doesn’t need to have treatment despite the numbers. Her underlying health has always been good and she doesn’t have any bone damage either. However, I am sure it would be very different if she was younger and able to stand a stronger type of treatment like Bendamustine but even on Revlimid she become unwell with anaemia and low blood counts – since she stopped these have all bounced back to normal.
I hope she continues to do well but at some stage I know she will need more drugs!
Jill
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 and waiting’ as her consultant says. She is very well, much better than when she was on the various drugs (she has had CTD, Velcade and RCDa).
Take care,
Jill
I still don't claim to understand light chains and their significance however Mum's bone marrow biopsy showed that she has only around 20% bone marrow viability (this relates to the ability of the bone marrow to do what it should do as part of the normal immune system I think) so she is certainly not a candidate for Bendamustine. That was back in September and she is not having any further treatment at the moment, we are doing a watch and wait every six weeks. Her last light chain reading was around 5,000 with PPs at 24. All other bloods normal although neutrophils still low as a result of the Revlimid. It doesn't appear as though the high level of light chains is causing a problem at the moment.
On the positive side she is really very well without the drugs – in fact much better in herself than I have seen her for some time. At 84 years old her quality of the time she has left is the most important thing.
Hope they can resolve your back pain John,
All the best,
Jillx
Hi Jo,
My Mum always had low days after finishing the dex days, and they were much worse earlier in her treatment as they were combined with the depression she had developed as a result of being told she had myeloma. At one stage the doctor offered her anti depressants but we didn't take them as it would have been one more tablet to add to the vast collection – and she had enough of those to deal with.
All I can say is that it does get better, particularly when you start to see that the treatment is working. My Mum is 84, was diagnosed 6 years ago and is still going strong – she is currently off treatment and feeling very well. Hope you can take some cheer from knowing that the treatments normally work…!
All the best,
Jill
Hi Sarah,
My Mum had four cycles of Revlimid and it did reduce her PP level but she suffered with anaemia and low neutrophils as a side effect. She was on 10mg plus cyclophosphamide and dex – the doses were low as she is 84.
She stopped this treatment in August and has been off treatment since, unfortunately the next option of Bendamustine is not suitable for her due to the poor state of her bone marrow. So we are watching and waiting – at the moment she is really very well – better than I have seen her for a few years while she was on the various treatments – so who knows!!
Good luck to your Mum,
Jillx
Hi Mary,
My Mum, age 84, had one on Wednesday this week. No sedation but had a local anesthetic. She said it was uncomfortable but it helped that she had a good looking male nurse there to hold her hand! I think it is down to the skill of the person doing the job and she was also first on the list which probably helps as it is hard work for the doctor doing the work. Afterwards she was fine, bit of discomfort but manageable with a couple of paracetamol.
Mainly just glad it is over I think!
All the best, Jill
Hi Lynne,
The flushing is a side effect of lenolidamide, it was specifically mentioned to us when Mum started taking it.
All the best,
Jill
Hi Mandy,
My Mum has had carpal tunnel syndrome in both hands, she had the operation on both hands at different times. As you say the op is very straight forward and quick. As Mavis says I think it is quite common in people with MM. I also have a younger friend who needed the op last year – apparently it is also fairly common in women. Annette is right the operation is quite debilitating – you will be unable to do anything much with the hand for about 6 weeks – could be difficult with both hands out of action. You also need a bit of physio afterwards to help build the handle and wrist muscles up.
All the best for tomorrow anyway,
Jillx
Hi Linda,
Sorry to hear about your Mum but glad she is peaceful and comfortable which is what we would all want when the time comes. She also has you there to support her which means you are doing everything she would want.
You are right about difficulty is diagnosing MM in older patients, my Mum was 'fortunate' in that her GP spotted something strange in her blood results (raised ESR levels) and so referred her quite early in the process of the disease. However, since then she seems to have been on a constant treatment rollercoaster which has been difficult for someone of her age.
All the best to you and your Mum,
Jillx
Hi Ian,
Just to update, no Bendamustine for Mum at the moment, her consultant wants to do bone marrow biopsy to find out more, in the meantime she is off treatment and so feels much better. He said he didn't want to give her a treatment which would make her feel less well which is good news. We will know more after the biopsy is done.
Hope your appointment goes well – let us know.
Jill
Thanks everyone for the helpful replies. I did speak to Ellen as suggested and we also saw Mum's consultant this morning. I raised the issue of the light chains and my confusion, he took some time to explain but it comes down to the very individual nature of the disease although in her case even he is surprised about the lack of any kind of kidney or bone problems in view of the levels of light chains she has had.
Anyway, because of her age and current reasonable health he is not keen to start her on Bendamustine or anything else until he knows more and so is arranging for her to have a bone marrow biopsy before deciding on any further treatment.
I am happy with this as I don't want her to keep having chemo treatments if there may be a gentler way to keep things under control – he did agree with this approach which has made me feel a lot better. Even though a biopsy will be difficult for her I would rather she had this than more chemo treatment which makes her feel bad and causes other problems.
The good news is no treatment in the meantime so she can carry on feeling quite well.
Thanks again for the replies.
Jill x
