[chloependrouseParticipant]

Dear Cassidy

Sorry it’s taken me a while to reply to your post. It was really interesting to read about how you tolerated VCD, thanks for all the information your provided. Yes, it’s quite a commitment twice weekly trips to the hospital – specially when the hospital is far away! But you did it, you got through your first line treatment. Mum is also saying how she feels physically and mentally stronger this time round, even though the sudden relapse came as a big shock. She is seeing her consultant in the next couple of weeks so we’ll see what the plan is then. Still not sure when treatment will start but thanks for taking an interest and for your moral support – it really is a big help.
I’m sorry to hear that you have the added complication of kidney difficulties. Mum’s kidneys were damaged as initial diagnosis took so long but they seem to have recovered fairly well. The dreaded dex played havoc with emotions though so not looking forward to her having to face that again, they lowered her dose last time which helped so hope they can do that again. I hope that you are beginning to regain energy now that you are off treatment and I wish you all the very best. I hope that you are enjoying this early Spring sunshine 🙂

Chloe xx

[chloependrouseParticipant]

Thanks Kevin for answering my last questions too 🙂

Chloe

[chloependrouseParticipant]

Thanks Kevin for answering my last questions too 🙂

Chloe

[chloependrouseParticipant]

Hi Cassidy,

Thanks so much for your kind words and for taking the time to reply to my message. It was very sad and disaapointing to hear of mum’s relapse so soon after SCT (I’m not sure she would have gone ahead with it if we’d known how little time she would be treatment free after the gruelling process but there we are). I’m really happy to hear you are off treatment and have reached plateau. Can I ask how long ago you finished your treatment? Did the fatigue/side effects worsen as the treatment cycles went on? Ie by cycle 8 were you feeling a lot worse than at the start? Mum found her last regime hard going but she is in a stronger place healthwise (and probably emotionally) than when she started first line treatment after being diagnosed. I am hoping she will be able to continue as normal a life as possible whilst on velcade/carfilzomib but I know this may be wishful thinking!
Best wishes again to you,
Chloe

[chloependrouseParticipant]

Hi Kevin,

Many thanks for your detailed response to my questions. I know it may be different for my mum but it is still reassuring to hear that the side effects of Carfilzomib haven’t been too hideous for you. It’s interesting that my mum’s consultant was talking about her taking Carfilzomib with both dex and cyclophosphamide. He has suggested 8 cycles but you never know she might get lucky and not have to do all 8 if she responds well! Also interesting to hear you were on ‘maintenance’ for 10 cycles afterwards – is this Carfilozmib or another drug? I have heard lots of people talk about revlimid etc but didn’t think it was available unless on a trial. Thank goodness mum doesn’t have any comorbid conditions. She has a 8 fractured vertebrae in her spine due to the myeloma taking hold before she was diagnosed but amazingly she has got off the morphine and manages the pain in her own way (usually involving a ten minute lie down in the afternoon!). She is trying to keep active as much as she can and she is in such a different and more positive place than this time last year (when she was about to start her SCT). It makes it even harder to accept that she is relapsing!

Anyway, hopefully not too long for you before you are finished with your maintenance cycles and can enjoy a drug free life again.

Take care, Chloe.

[chloependrouseParticipant]

Hi David,

Yes, I have been to a couple of the Myeloma info days now which were both brilliant. I don’t know if I feel up to going along to a support group – a a younger person I’m not sure whether I would feel out of place as I don’t hear many other children (all be it adult children!) of people with Myeloma attending support groups but I’ll definitely give it some thought. Someone else mentioned Maggie’s Centres to me – again I feel like a bit of a fraud, it’s not me who has cancer and it’s not like I’m a full time carer for my mum or anything – she lives over 200 miles away from me. Although sometimes I do feel quite lonely in dealing with all the emotions so they may be able to offer me something.

Thank you so much for your suggestions, food for thought and something for me to consider.

Chloe

[chloependrouseParticipant]

Hi David

Thanks so much for your message of support. I am pleased that you had a longer period of remission from your SCT but sorry to hear that you too need to start 2nd line treatment. You know it will come at some point but it still hits hard doesn’t it?
I too seem to generally hear that most people tolerate Velcade quite well which is reassuring. I’m not sure what level my mum’s pp’s are at at the moment – apparently hr blood results are particularly hard to read so the consultant it getting a second opinion for treatment options etc.
Thanks so much for your upbeat words and positivity – I don’t really know why I’m finding this so hard but I love my mum so much and it breaks my heart to see what she is having to go through and to feel so powerless to help. Maybe I should try and find a support group as a carer – I think it might help. I live far from my mum and sometimes feel quite alone with it all.
It will be interesting to hear what treatment you and your consultant decide on in the end – whatever this may be I wish you all the very best with it and here’s to a long period of remission ahead.

Chloe

[chloependrouseParticipant]

Hi Kevin

Thanks so much for taking the time to reply and sharing your thoughts with me. My mum also had CDT followed by SCT as her first line treatment. Can I ask whether you had a second SCT after your second CDT treatment? AS fas as I know repeating CDT for mum hasn’t been discussed but it might be worth her talking it through with the consultant as I suppose if it was a possibility it might leave more options for treatment in the future. I am so pleased that you have had a good length of remission after each treatment. Mum is fit and healthy (apart from the damage caused by the myeloma in the period she was misdiagnosed) but just turned 70 so I doubt another SCT will be offered (even though she tolerated her first one amazingly well last year!).
Could I also ask how you have found Carfilzomab? Manageable? How many cycles have you had in total? As my mum is not likely to have long periods of remission it seems so unfair that she might have to have another 8 months of chemo (2 x weekly trips to hospital etc).

Thanks again for your support, it really is amazing but it has lifted me a little. I only found out about the relapse on Thursday evening but have spent all weekend under a blanket on the sofa feeling so sad. I know I need to find a way to handle this and I know it’s not the end of the journey yet.

Best wishes,

Chloe

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