[chloependrouseParticipant]

Hi,

I’m just after some advice really around 2nd line treatment options. Sadly my mum has relapsed (9 months after her SCT). A lot sooner than we had hoped. I am feeling quite devastated but am trying to draw strength and find some positivity. Hre consultant has indicated that she will likely be starting either VCD (velcade, cyclophosphamide and dex) or Carfilzomab, cyclophopamide and dex) next month. I ws wondering whether anyone had any thoughts on either of these two treatements/which may be preferable/more tolerable. I know that can’t really be answered as it’s all so individual but to hear how people got on with either of these treatments at first relapse would be helpful.

Many thanks

Chloe

[kevinParticipant]

Hello Chloe
As you say it is very individual even for the individual. I am currently on a maintenance cycle after 3rd line treatment. Diagnosed in 2006 I have been lucky to have about 4 years with each remission. My first treatment was CDT followed by SCT. This worked well and was quite tolerable. On my first relapse my Consultant wanted to try something different. I asked if I could try the same again as it had worked and I had tolerated it well. He agreed saying if it didn’t work we could swap. It did work again however the side effects this time were worse which I didn’t expect having the same treatment. Again I got about another 4 years remission. My 3rd line was carfilzomib which has led to none detectable paraproteins. Have 2 more maintenance cycles left. You cant really say this or that will work. I have faith in my Consultant and who as others do consider the best treatment for your current state of health, fitness and age. Mine has done a great job keeping me going. Not sure whether this helps but am quite happy to answer any other questions you have.
Best wishes to you and Mum
Kevin

[davidainsdaleParticipant]

Hi Chloe

Sorry to hear that your mum has relapsed after 1st SCT – I know how she feels having had the same experience, albeit on longer timescales so now waiting to see what second line treatment might be. I was diagnosed in 2013, pps are currently 9 and rising slowly.

Kevin makes a number of useful comments in his post and I must admit that the idea of repeating the first treatment does sounds attractive if it worked first time. Something I am thinking about.

I know quite a number of people in our myeloma support group who have had Velcade and generally seem to sail through treatment without too much trouble. It does seem very effective at reducing paraprotein levels.

There are plenty of options and combinations of drugs becoming available to feel positive about. The consultants will have a pretty good idea of what is best for your mum taking everything into account. The best advice I have seen is to try and stay as fit and healthy as you can despite the myeloma.

I would also recommend chatting things through with the team on the Myeloma UK helpline. They are very friendly and knowledgable.

Hope this helps

David

[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

[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

[davidainsdaleParticipant]

Hi Chloe
Sorry to hear that you are finding things difficult just now. They say that myeloma is like doing a marathon rather than a sprint.

There are lots of ways in which you could get support.They say that it’s good to talk. I would certainly try going to one of the myeloma support groups which you mention. There are also Myeloma UK Patient and Family Info days which are held around the country. These are excellent and I can certainly recommend.

Other sources of local help might by Macmillan or Maggies centres which might not be not too far away from you.

Hope this helps
David

[kevinParticipant]

Hello Chloe

Yes I did have a second SCT after my second CDT. I think the Consultants look at the individual and assess whether they feel that the person can physically cope with the SCT. I relapsed for the second time at the end of 2018. I started carfilzomib and dex in January 2018. The treatment was to be 8 cycles followed by 10 cycles of ‘maintenance’. After 6 cycles my Consultant decided that would be it as my condition had plateaued and the paraproteins were undetectable. I then started the maintenance cycle which I have 2 more to go and should finish in April. As carfilzomib is a targeted treatment there seems fewer side effects. The main one for me has been the tiredness / lethargy but that is not major in the scheme of things. I suffer with back pain as a result of the initial damage caused and think possibly the carfilzomib is making that worse at the moment as back pain can be one of the side effects. I am sure in a couple of months or so when I have finished treatment and it is out of my body things will return to as they were.
As you say Mum is otherwise fit and healthy this should be a great help.
David describes it very well calling it a marathon not a sprint.
Best wishes to you and Mum.
Kevin

[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 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.

[Anonymous]

Hello Chloe, I have only just joined the forum.
I was so sorry to read of your mums relapse after her sct, I really feel for you.
I didn’t get a transplant as deemed too high risk but did do 8 cycles of velcade which put me into plateau and I am now off treatment and feeling well. My myeloma is the most aggressive type but the velcade did its job with tolerable side effects. I hope you are both well and wish you all the best with your future treatment.
Cassidy

[kevinParticipant]

Hello Chloe

Yes the ‘maintenance’ treatment is carfilzomib but the treatment is only once a week in 3 of the 4 weeks cycle instead of twice. and also a smaller dose. Regards the initial treat the usual is I think with cyclophosphamide but my consultant decided to go ahead without it. Not sure the medical reason but it worked for me and was one less drug.
Best wishes to you and Mum
Kevin

[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]

Thanks Kevin for answering my last questions too 🙂

Chloe

[chloependrouseParticipant]

Thanks Kevin for answering my last questions too 🙂

Chloe

[Anonymous]

Dear Chloe,
I have been off treatment for 9 weeks and I have to say looking back I think the most tiring aspect of the whole process was the back and forth to the clinic for appointments, I was lucky that the velcade didnt make me sick but the steroids played havoc with my innards. I have the added complication of kidney failure caused by my ppcl myeloma which means I have to have dialysis three times a week, but I still managed quite well overall.
Although I didn’t get my transplant due to being to high risk I was told that my remission may have been short lived due to my type of myeloma combined with kidney failure, so I was in two minds whether it was worth it. I definitely think I wil be in a better position to cope with my second line treatment now the shock of my diagnosis has worn off and the fear of the unknown as been removed, I have accepted that treatment of one kind or another is going to an ongoing commitment and have adjusted mentally to this reality. Please update us on your mums progress as you go along, and I send you all my very best wishes to you both and all your family.
Yours Cassidy

[Author]

Posts