Mavis, Megan and Dai,
Thanks for replying. I should have said that Mum has Lambda light chains (not Kappa), and the highest her PP's have been is 36. She has no bone damage.
I think I will ring Ellen, might help me feel better informed next time we see her consultant.
Thanks,
Jillx
Ian,
My Mum is in the same position as you, her consultant has stopped Revlimid and mentioned starting Bendamustine but didn't tell us much about it. We are going this Thursday to see him again so I will pass on anything I find out about the regime. From what I have read it is a monthly IV treatment but what else is involved I am not sure yet. I am hoping it is not too difficult for Mum in terms of side effects, she lives alone and I want her to continue to be as independent as possible.
Will update following her appointment on Thursday.
All the best,
Jill
Hi Andy,
Thanks for the posting, Revlimid certainly seems to have affected Mum's blood counts, her HB was 8.7, Neuts 0.5 but after a week's break from treatment HB is 9.1 and Neuts 0.7. She is going in for a blood transfusion on Wednesday, the third one she has had during five months of Revlimid. Velcade did work for her while she was having it but as soon as she stopped the PPs and light chains started to rise again quite quickly.
Not really sure what they will decide to do next with her – apparently there is a meeting this week and she is on the agenda (!!) we have to go back next week to find out.
She is in fairly good health apart from myeloma with no bone problems or pain and is very good with taking all the treatments – not sure I would be so keen at her age to keep swallowing all those tablets!
All the best,
Jill
Hi John,
Try the Red Cross – they do help with living aids, click on the following:
http://www.redcross.org.uk/What-we-do/Health-and-social-care/Independent-living
The other place to try is your local social services – they should be able to give advice and support.
The doctors really should be able to help with the side effects – there is medication to help with sickness etc so make sure June gets the benefit of these.
Hope this helps,
Jill
Hi Ian,
Interesting to read this thread. My Mum (age 84) has been on Revlimid for five months with light chains starting at 10,000, they are now at 5,000. PPs have gone from 34 to 26. Today her consultant said he wanted to try something else as he was not happy with this slow progress and Revlimid has also made her quite anaemic. She was diagnosed in 2007 and has already had CTD and Velcade so apparently the next would be Bendamustine but it would need to be approved so we have a wait but in the meantime she is free of drugs for a few weeks to allow her HB and neutrophils to recover.
Overall she has done very well for her age but I guess she is starting to run out of options.
Hope the Revlimid works for you – let us know how you get on.
All the best,
Jill
Hi,
Just to say that my Mum is 84 and has had three rounds of treatment for myeloma since 2007 including CDT, Velcade and now Revlimid. Her kidney function has always been fine, but I wasn't aware a poor kidney function meant you couldn't have any treatment, as the treatment can help improve kidney function!
As Eve says it is worth ringing the helpline, it sounds like you need to have a discussion with her consultant again to see what the options are, as a specialist nurse would not normally be deciding what treatment is best, they normally just help to manage whatever has been prescribed by the consultant. It also sounds like your Mum could benefit from the bone strengthening treatment that a lot of MM sufferers have which is also used for osteoporosis.
Keep in touch and let us know how things go.
Jill
Hi Sandie,
Great that your Mum is having a good effect from the drugs. My Mum had the same regime plus thalidomide as her first round of treatment and it worked well, after about 9 months she went onto just a small maintenance dose of cyclophosphamide which kept things at bay for about 2 years. The steroids were just stopped at the end of the last cycle – as they are only once a week they don't really need to reduce them gradually as they would if you had them every day. As to the Zometa, we have been told that Mum should have it every month continuously as it does work to keep the bones strong which is really important for elderly women, most of whom have weaker bones anyway. I hope your Mum finds that easier to cope with in time – my Mum has got used to it and the weekly trip to the hospital does at least give them a chance to check her over regularly.
Hope you get some good results on Monday too!
Love, Jill x
Hi Wendy,
I am not sure I completely understand the different types but my Mum's light chains were 10,000 when first diagnosed, they have gone up and down with the lowest being about 1,000, she is current on her fourth cycle of Revlimid and they are at 7,000. She has no kidney damage at the moment. So it seems they can go up to quite a high number as Helen has said.
All the best,
Jill
Georgie,
Welcome to the Forum. I have a similar issue with my Mum who was diagnosed with MM in 2007. When she started CTD she was very depressed and all the doctor offered was Citalopram which didn't seem a very good option to me – Mum is 84 and was already feeling quite drowsy and confused due to the CTD effects, I didn't want to make that worse! Anyway, we got involved with a local hospice and Mum went along to their weekly 'social' sessions and art classes which she enjoyed, in this way she got access to support and counselling rather than having to be referred to a counsellor through her GP. It did help her but to be honest she has been very up and down over the last five years, each time she starts a new treatment she tends to get very low for a while and the only times when she really seems well are when she has a break from treatment which is not very often.
It is hard particularly if you are in pain but if your Dad can see things are improving due to the treatment this will help and if you can get him involved with something like a local hospice they are great in what they offer to patients and carers.
All the best to you and your Dad, let us know how he gets on,
Jill
Ali,
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 in your email? I guess I will wait and see next week!
All the best,
Jillx
Hi all,
Completely agree with all this – my Mum with MM lives alone and has a home help, gardener and I do her shopping each week (I have it delivered to me with my weekly shop and take it round to her every Saturday). I would never manage to do all the cleaning and gardening for her and the attendance allowance helps with costs. I am still trying to find a hairdresser to visit her at home…!
Unfortunately the effects of MM have been much more on the mental side for my Mum rather than physical, she is constantly bordering on depression which is quite wearing at time. I have tried to discuss this with the doctors but understandably they are really only interested in treating the illness. I do have to do a lot of morale boosting…
Take care all,
Jillx
Hi Sandie,
My Mum had Thalidomide during her first round of treatment and it made her quite drowsy – they say it should be taken at night. It did work well to lower the MM indicators, she didn't have any blood thinners with it but she doesn't have heart issues like your Mum. She has also had dex several times and it certainly does make you feel low and weepy a couple of days later, plus increases confusion. Watch for that with the thalidomide too – Mum's doctor did lower her dose of thalidomide as she was a bit groggy on it, and I understand that research has shown that lower doses can be just as effective. She didn't seem to have any effects from the Zometa and has been having it every month for about a year.
I also worry about my Mum taking all these medicines at 84, to be honest I would not want to spend most of my time feeling under the weather due to medicines at her age. She has had very little symptoms from MM over the last five years (which I know is because it is being controlled) but all the health issues have been down to the treatment. This is a difficult balance in elderly patients as we all still need to have some quality of life even in our 80's!
Take care,
Jill x
Hi Sue,
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 effects in the first cycle, by cycle two she seemed to be doing better. Mum doesn't have allopurinol (can cause allergic reactions) and has penicillin (not cotrimoxale) and half an aspirin for blood thinning – as she lives alone there was no way she could manage daily blood thinner injections and I refused to do them for her! But David is right – the combinations and timing can be important too.
Hope things improve for you soon.
Jillx
Dear Tanya,
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
Hi Debs,
My Mum is on Revlimid and the hospital told me flushed cheeks was a common side effect of the drug.
Take care,
Jillx
