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 yesterday, a very long 12 hour day for her as there were delays with the hospital transport, but I actually think she quite enjoyed it, the staff and other patients in the unit are very friendly and she seems to spend the day chatting up all the men!
We next go back to the consultant in May so will see how she is getting on again then.
Love to you and your Mum,
Jillx
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 posting your updates, it is really helpful to hear how you are doing, hope the PP results are improved.
Take care,
Jillx
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 there didn't seem to be a maintenance option to move onto next. Her consultant implied that Velcade was not always good value for money in terms of ongoing effectiveness (I understand the cost is around £7000 per cycle). She is now on Revlimid (since Feb)and so far it seems to be working – I am assuming she will probably go onto some kind of maintenance dose after a number of full cycles.
All the best,
Jill
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 to suffer with a tummy that is sensitive to her emotions, apparently it is a very British thing as I was once told by a psychiatrist friend, due to our habit of trying to keep emotions under control with a stiff upper lip!
Take care,
Jill
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 more positive about all the tablet taking!
Sending all the best to everyone,
Jillx
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 it the day before the cyclo as well and that does seem to do the trick. My Mum now takes them twice a day every day as that seems to work best for her.
Take care, Jillx
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 relatively low dose for older patients. My Mum finds it makes her a bit more energetic for a day or so (as her consultant put it "makes you want to do the ironing") but then she has a bit of a low period for a day – this is just due to the effect on the blood sugar levels I think. She hasn't had too many problems with weight gain at the low dose (she has 20mg once a week) although she did with a higher dose which does lead to an increase in appetite! I think they normally also prescribe Omeprazole to take with the Dex – this helps prevent problems with stomach acidity caused by the Dex. Dex does provide some pain relief although this is only for a day or so if it is only taken once a week.
Love to you and your Mum, Jillx
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 the hospital was tiring for her. She has now started the second cycle of her current chemo regime – all her blood results last week were fine and not too much impact on the immune system yet which is good. We will see her consultant next week and will find out whether the treatment is helping reduced the MM levels – if it is then it is worth carrying on for another couple of rounds.
Let us know how you get on with the consultant tomorrow, it is good to hear how someone a similar age to my Mum is getting on!
Love, Jillx
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 again so has to go for a blood transfusion on Monday which should perk her up a bit. She has only started to suffer with anaemia in the last year so maybe this is an indication of the disease having more of an impact on the bone marrow function. Anyway, they say that diarrhoea is not a common side effect of Revlimid so they are not convinced it was the cause so I guess we will just see how the next cycle goes. Mum is quite emotional and doesn't like having all this treatment so I have to work hard to keep her positive – it is not a good place to be when you are 83, or indeed at any age.
Love,
Jillx
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, she is due in for her bone strengthener infusion tomorrow and they are going to give her a good check up before deciding on the second cycle of treatment and doses (she finished the 21 days on Sunday). So it may be a short delay before she starts the next round as I know they have to order the Revlimid which can take a few days.
Helen, you are right about the fluid but I think she is unlikely to be drinking the full 3 litres despite my nagging!
It might be worth getting her some loperamide as well I think.
Thanks again,
Jillx
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 think this has given her some protection against infections, at least she doesn't seem to have suffered and seems to get over colds etc quite well. So this might be worth suggesting with your Mum's consultant.
I certainly don't think your Mum should be a recluse, I have encouraged Mum to keep going to her weekly club and other things, at their age you can't put everything on hold. I just remind her to wash her hands regularly and she carries a little bottle of antibacterial gel to use as well. Having said that she has picked up bugs but they don't seem to have turned into anything serious thankfully.
Interested to hear what you say about going for blood tests, I have never thought of trying to avoid waiting in the busy area with Mum but maybe I should try it next time, I tend to take her when I know it will be quieter if I can.
Take care,
Jill x
Hi Sandie,
Glad your Mum is feeling better. My Mum has been taking Penicillin every day since she was originally diagnosed, not because she had any infections but just as a precaution according to her consultant. I think it helps prevent anything like a cold developing into an infection. It certainly seems to have worked for her, she has not had any kind of infection and seems to be able to deal with the odd cold or tummy upset very well. The penicillin doesn't seem to bother her in terms of side effects.
Mum seems a lot better this week in terms of her current treatment (Cyclo, Dex and Revlimid) I think she is getting used to it all now! The worst bit is really the Dexamethasone so it is good that your Mum doesn't have to take that one!
Glad to hear your Mum keeps positive, it is the best way to be at their age. My Mum is better now, unfortunately she had just dealt with the death of my stepfather when she was diagnosed so I think that was a big part of her initial depression.
Love,
Jill x
Hi Sandie,
Sorry to hear your Mum is feeling a bit sicky, I think it is most likely to be the cyclophosphamide as they do the same to my Mum. She takes Metoclopramide twice a day which seems to help, she only really notices it the couple of days after she takes the cyclo but I have told her to take the anti-sickness tabs every day as it keeps up the levels in the system and is simpler for her. It also seems to get better after she has been on the tablets for a while so I guess the body gets used to them. How much cyclo is your Mum taking each week, mine takes 500mg (10 50mg tablets).
Take care,
Jillx
Great news, well done to you both! Champagne all round I think.
Jillx
