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Multiple myeloma end stage what to expect

21 Sep 2019 22:22

My parent came home from hospital 2 weeks ago ending all myeloma treatment. The consultant said 2-4 weeks life expectancy...we are to expect hypercalcemia. Yet...they seem so healthy and full of energy and we are at the end of week 2.. they are on 10mg steroids daily so maybe this is helping but I'd really find it helpful to hear others experience of end stage. Should we expect it to be sudden? Or do people defy odds with no treatment for long?? Thanks.

Multiple myeloma end stage what to expect

23 Sep 2019 15:48 in response to Katielin

Hi Katielin,

It's great that your parent is still around and has a lot of energy. The best people to ask would be someone in their medical team, who may have a better idea, but the end stage can be different for different people. Feel free to read here for more information on the final weeks.

All the best,

Moderator Anastasia

Multiple myeloma end stage what to expect

2 Apr 2021 09:13 in response to Katielin

Hi 

I know your post was ages ago, it describes my situation totally with my Mother in law. She has multiple myeloma and came home under palliative care  just over 2 weeks ago. She is brighter and livlier than ever. Without causing you any more upset I'd it possible to ask you what happened after that ?? How long did that good stage last? We are all finding this very hard abs not knowing what to expect is even harder! X many thanks xx

Multiple myeloma end stage what to expect

2 Apr 2021 10:29 in response to LisaPJ

Hi there ah it's no problem.i was the same I came here looking for answers or help so I'm happy to do the same.first of all I'd preface that with my mother's myeloma we previously had 3 or 4 times where calcium or creatinine was so high that they had thought she had reached end stage but she bounced back....

But the stage I was asking about above she had finished all treatment. We got 6 weeks with her whenshe came home and doctor had said a few weeks. They were the loveliest weeks as she was in such great form.we went to lunch,sat around going through photos,celebrated birthdays etc. The one thing I regret is that I felt watchful of "is this it" ,"will it be this week" ..."should she really be going for spin in car with her friend" etc.... go with the flow and rather than worry,encourage her to do whatever she can or wants. 

After 6 weeks on the Monday we started to see signs and Monday night she was in great pain and was unconscious Tuesday morning and passed wed night. For us it was better it came quickly and we had the loveliest time leading up to it rather than her ill on bed. My advice is lots of photos,lots of video-i would love to have more of her voice..... and have no unsaids...this is the time to talk over tea and biscuits. Feel free to ask any questions ill help you how I can.i wish ye all the best in the time ahead. 

Multiple myeloma end stage what to expect

3 Apr 2021 01:23 in response to Katielin

Hi Thank you so much for your reply. We are just about 4 and a half years since diagnosis. It's been a tough time for her with 4 remissions with various chemo regimes including the last one being an unlicensed drug from America. She was only on it 4 weeks and was so ill ended up as an emergency admission to hospital. All treatment was stopped on 16th March with 2 weeks given (possibly days) and she was referred to palliative care. Last Friday we managed to get her out of hospital and move her into a friends house 2 doors away from us. Her sisters have come down from London and are staying with her and caring for her along side the Marie Curie nurses. 
Her platelets were only 8 on release and her kidney function had halved in just under a week. Once the treatment stopped she has felt so much better and been much more lucid. It's so hard not to constantly think about when will it be and expecting that call. All her family have been able to come down and see her. We have taken her out for drives, cream and fish and chips by the beach. We've laughed and cried and held hands often. She has chosen her songs for her funeral and told us exactly what she wants. This last 2 weeks has been lovely and almost like we have the old her back. 
Thank you again foe your reply x x 

Multiple myeloma end stage what to expect

3 Apr 2021 02:37 in response to LisaPJ

Ahhh sounds a lot like our path too..... tbh these weeks will seem like a weird gift after such a hard path and struggle through the treatments. I'm glad ye are enjoying them so much and how great she is able to plan with ye and discuss everything. I wish ye the very best over the coming weeks xx ( also,journal all the little bits-the sayings,the outings etc because when it's over its great to read back and realise how good ye made the in between bits....)

Multiple myeloma end stage what to expect

6 Apr 2021 04:41 in response to Katielin

Just to let you know my Mother in Law passed about 2 hours ago. I was sat with her for the night shift. She was struggling a lot so I rung the nurse. They administered some drugs and she passed within 10 mins. So glad she for to see all her family. Her 3 sons saw her today also. Thank you for your advice. Take care 

Lisa x. X

Multiple myeloma end stage what to expect

6 Apr 2021 10:08 in response to LisaPJ

Ah so sorry to hear that and sorry for your loss. I'm so glad everyone was able to see her before it happened. Mind yourselves in the time ahead. I'll light a candle for her today. Thinking of you all x