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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

Hi Clair,

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

Hi Sandie,

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]

Hi Andy,

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]

Hi David,

My Mum had Velcade plus dex last year – she had four cycles of treatment involving a subcutaneous injection once a week and two days of dex per week. The Velcade did reduce her pps and light chains (she has IgA type)during the treatment but the levels started increasing again almost as soon as she had finished the last cycle and…[Read more]

Jen,
Thanks – I am sure you are right about the diarrhoea side effect, but I do think in Mum's case it was largely emotional. Interestingly she has not had the problem at all so far in this second cycle (in fact rather the reverse!) and I think she is feeling more positive about it all having been told it is working well. She has always tended…[Read more]

Hello everyone,

Just for anyone who is interested, my Mum, age 84, is now on her second cycle of Revlimid, Cyclophosphamide and Dex and yesterday her consultant told us that her light chains have already reduced by 25% (from 10,000 to 8,000) and PPs have dropped from 40 to 34. So a good result from the treatment so far which had made her feel…[Read more]

Sandie,

Dai as always provides very wise and helpful advice. Fluids – yes, and keep reminding her as older people often don't drink enough – if she is not too mobile a jug or bottle of water next to her so she can help herself without having to go to the kitchen might be a good idea. Also agree very much on the anti sickness medication – take…[Read more]

Hi Sandie,
Glad to hear things went OK with your Mum yesterday and that she is going to have the Penicillin – this is the same dose as my Mum who has been on it for about 6 years now without any problems. Just responding to your question about Dex – this does boost the effect of the cyclophosphamide and is normally only taken once a week as a…[Read more]

Hi Sandie,

Very glad to hear your Mum is feeling better, I think the regular antibiotics sounds like a good idea – it certainly seems to work for my Mum. My Mum had to have a blood transfusion on Monday, she was rather anaemic again which may be myeloma or down to the treatment, anyway she certainly looked better afterwards although the day at…[Read more]

Thank you everyone for your responses. Mum went to the hospital yesterday for a check over and her Zometa. They did a number of blood tests, some of which will take a couple of days so they didn't give her another round of meds until they get these results to check no infections, dehydration or kidney problems. However, she is pretty anaemic…[Read more]

Thank you Annette, Nettie and Helen for your replies. I am not convinced that the Revlimid is causing the problem, having spoken to the hospital they say it is not a common side effect, constipation is much more common which she did have with Thalidomide which is a similar drug. She does also have a bit of what I call emotional tummy! Anyway,…[Read more]

Dear Sandie,
Sorry to hear about the time your Mum and you have been having, but glad to hear she is on the mend. Impressed you have managed to get the district nurse involved, it is terribly difficult to get them doing anything where we live! Just to say that my Mum has been on long term antibiotics since she was first diagnosed and I like to…[Read more]