[sarahjParticipant]

Hi all

our mum (80 years old) has recently been diagnosed with multiple myeloma stage 3. Prescribed steroids for the condition at the moment, the consultant is keen for mild chemo treatment we are unsure anyone out there have similar experiences and can give us some advise. Many thanks

[kaz18Participant]

Hi sarahj, it sounds like we may be in similar situation. My Mum has just been diagnosed as well and she’s 84 years old. She started her drug treatment a week ago. She’d taking a combination of Cyclophosphamide, Dexamethasone and Thalidmide. Although she was really positive last week (I think just glad to get a diagnosis), she is now feeling the side effects, very tired and down. It’s difficult to know what to do as it’s very early days and me and my Dad feel a bit helpless. x

 

 

[VickiParticipant]

Hi there

I don’t have any experience of more elderly diagnosis, but just wanted to drop you a kine to wish you well. I do know of others not in my family, that are pensioners and been diagnosed. They are on maintenance treatment and doing very well- I do hope you Mum will be well. Just take each day as it comes. I think that applies to all myeloma- whatever age of diagnosis!

All the best

Vicki and Colin x

[andygParticipant]

Hi Kaz.

The first few weeks of most treatments are hard as the body copes with the poisoning it’s undertaking. If it persists or gets too much for your mum the medics will reduce the dosage of the drugs. The big thing to balance is quality of life over treatment especially in the elderly. That applies to your mum too Sarah.

Every day is a gift.

Andy xx

[toonbadgerParticipant]

Hi Kaz18 & sarahj

Hi, hope both your mums are receiving best treatment possible and well on the way to getting benefit from it.

I am in very similar situation to you in that my 86 year old mum Val has recently been diagnosed with myeloma effecting her spine. She has had 4 radiotherapy treatment sessions and starts her CDT treatment tomorrow. Not sure what stage she is in, seeing specialist tomorrow so will ask him. After being in severe pain due to the myeloma effecting her spine, I am pleased to say it is now bearable with her taking regular morphine.

kaz18 – As your mum is of similar age to mine and on same course of CDT treatment, I am very interested to hear of any updates regarding hopefully the progress your mum has made since your last message dated June 18th. My mum likes yours is very positive at the moment and all things considered of good mood (nurses say she is always smiling), but I gather when she starts her CDT treatment tomorrow, she will soon begin to feel the side effects of being down and tired. Any advice would be gratefully appreciated how you helped your mum to get through it.

How soon were you able to get your mums home?

Best wishes to you and your mums.

Doug xx

[kaz18Participant]

Hi Doug,

Thank you for taking the time to reply and sharing your story. Sounds like our Mum’s are very positive and determined ladies which from what I gather goes a long way in fighting this battle. Since I last posted, there have been ups and downs, to be expected I suppose. My Mum (June) hasn’t had any radiotherapy, just the CDT treatment. Her symptoms were mainly pain in her hip / leg. On the days when she has been taking all the drugs she has been struggling, mainly tiredness, pain, especially in her hands and with low mood. The days without drugs are a lot better and she sounds more like herself and quite chipper! She is frail though and due to anaemia did need two blood transfusions last week, but this immediately made her feel a lot better. She has now coming to the end of the first lot of treatment and will be assessed next Monday when she sees the consultant to see how she has got on and what happens next.

We have just been taking it a day at a time and on the days when she feels more like herself we celebrate. My Mum is a very independent lady who rarely asks for any help, which personally I have found quite hard as I want to do as much for her as possible, but she is determined that things are to be kept as “normal” as possible which I respect.

I hope your Mum’s side effects are as minimal as possible, I think key is understanding that she may well face, tiredness etc but to understand that it is just the drugs and of course keeping as positive and as normal as possible.

Keep me updated and I pray that all goes well.

best

Karen x

 

[toonbadgerParticipant]

Hi Karen

Thanks for updating me about the way June’s treatment has been going. Yes I would say it certainly sounds like our mums are very positive ladies. I hope that with time as the CDT/chemo takes effect in combating the myeloma, that June will experience more ups than downs and hopefully with time vast improvements in health and quality of life will result.

I am surprised and sorry to hear that June is still experiencing pain, as that was our main concern with my mum. When she was rushed into A&E it was heart breaking to see the pain she was in when she moved. It did not help she was admitted into A&E at 2am on a Sunday, and had to wait 6 hours before she saw a doctor who prescribed her morphine. Her pain is under control now and is able to move about, go to the toilet/shower etc by herself with the aid of a zimmer frame pain free, maybe only the odd twinge.

We saw the Hematology specialist today, and was pleased to hear that my mum has started her CDT treatment and could be home by the weekend where she will be a lot happier.

Apparently, like sarahj’s mum, due to her age (86) she will not be getting the full dose of the chemo drug (cyclophosphamide) straight away, and will be given, at least initially, a milder chemo treatment. Gradually the dose might be increased as and when they think she can tolerate it. So I guess she will not be experiencing the full side effects June has experienced until/if they up her dosage. It is planned she will get about nine courses of CDT treatment.

Thanks for sharing June’s and your experiences . It seems myeloma effects different people in different ways and depending on their age and health at time of diagnosis, will result in different treatments. But I believe and hope that the positive nature of our mum’s can only be an extra bonus, which along with treatments will improve their health and quality of life in their remaining  years (hopefully many).

I will post regular updates on my mum’s progress and please keep me updated on June’s progress as well. I would also be very interested to hear from anyone else, who has had similar experiences of elderly people being treated for myeloma (particularly on the spine).

Best wishes for June, yourself and other people having to deal with the effects of myeloma.

Doug xx

 

 

[jillsParticipant]

Hello,
Similar situation but further down the line for my Mum who was diagnosed at age 77, started treatment when she was 79 and has been on various drug regimes for the last seven years, she is now 86. She was also very independent and has done very well although I now do more for her than I used to as she decided to give up driving. She still lives alone and gets out to a local social club a couple of times a week. She has had CTD (twice), Velcade, Revlimid and is currently doing well on Pomalidomide. At various times she has needed blood transfusions and she has a bone strengthening infusion once a month. Amazingly she has had little in the way of infections or illnesses during the treatment. At 86 I would say that her quality of life remains quite good – hope this is encouraging for others in the same situation. Feel free to ask me anything if I can be helpful.
All the best,
Jill

[Author]

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