[iainf365Participant]

Hello. I was diagnosed with MM in June 2018 and had 5 cycles of VTD. In April 2019 I had a stem cell transplant. I’ve kept remarkably well throughout and still have no physical symptoms other than mild peripheral neuropathy from the VTD. But my FLC ratio has climbed steadily from 3 to 18 in the last 4 months. The plan now is to put me onto Carfilzomib, Lenalidomide (Revlimid) and a steroid (not Dexamethasone). I had hoped my SCT might have given me a longer period of remission. If you are on this treatment, how has it affected you? Have you coped with the practical side of twice weekly infusions?
Thanks,
Iain

[kevinParticipant]

Hello Iain

I started Carfilzomib and dexamethasone (no revlimid or equivalent)in January 2018. I had 17 cycles of which the last 11 cycles were classed as maintenance. This finished in November 2019. I have already had 2 previous treatments over the years (CDT twice and 2 STC) so no SCT after this one. I remember having very little side effects other than not sleeping the night after having dex. I was fortunate enough to have my treatments at home which made things a lot easier. this achieved a full remission which is were I am today and am on a 3 monthly infusion of zometa and a daily adcal lozenge.
Best wishes
Kevin

[iainf365Participant]

Thanks Kevin. Very reassuring to hear how effective it has been for you. No doubt I’ll get more specifics at my next consultation in mid-June.
Iain

[iainf365Participant]

Time has passed and an update on here is long overdue in the hope it may help some. My first cycle of KTD started in mid-July. This consisted of Carfilzomib via a hand cannula on days 1, 8 and 15 with 500ml of saline before and after. It requires a hospital visit. Lenalidomide days 1-21 and 40mg Dexamethasone on days 1, 8, 15 and 22.
I’m pleased to say that by the end of cycle 4 all my bloods were normal, including the FLC ratio. Thankfully my Dex was reduced to 20mg but it didn’t stop the problem of not sleeping much the night it was administered. The treatment is ongoing and I have just begun cycle 7.
All my side-effects are Dex related. Lucky to get 3 hours of sleep on Dex days. I initially lacked energy on days 4 and 5 but this improved and just had to pace myself. Tenderness in the mouth was an issue and my tongue swelled slightly which made speech awkward at times. It also affected my vocal chords and I became quite soft spoken. With the drop to 20mg only the sleep issue remains and days 4 and 5 are generally ok with occasional slightly tired and dizzy days. It appears my vision is slightly affected so a visit to the optician will be arranged.
All in all, this treatment has been hugely successful and I keep amazingly well. Long may it continue.

[shropshiremumParticipant]

Hi there

It’s good to read that your current treatment has been successful. I was diagnosed in Nov 2020, had six cycles of VTD, then a SCT in July 21. I’ve just finished my second maintenance cycle. I’m on lenalidamide, 7.5mg because my kidneys have been damaged by the myeloma.

Hope you continue to do well!

Susan

[iainf365Participant]

Hello Susan,
Kind of you to reply. It’s quite a journey and I wish you well as you continue treatment.
Best regards,
Iain

[raelParticipant]

Hi. Looking for information. My husband was diagnosed in 2018. After initial chemotherapy and a SCT his Myeloma was stable for almost 3 years. They did not collect enough cells for a second SCT. He is now on Carfilzomib and Dexamethasone and has just started cycle 3. The paraproteins have dropped from over 30 to 7 which is great. He’s generally feeling good although after every treatment he has 2 days of feeling pretty yuk! His consultant told him he will be on this treatment for some time with a possible review after 10 cycles. We thought treatment would be like most cancer treatments with 4-6months of chemo. I noted Kevin had 17 cycles. Are you completely off drugs now? What was different from your original treatment and maintenance treatment. Thanks so much.

[iainf365Participant]

Hi Rael,
It’s good to hear that the treatment is proving successful. My hardest time comes 12 hours after taking the Dexamethasone. It’s difficult to sleep and I’m lucky to get more than 2 hours, but I’m pretty bright the following day. Early on I struggled on days 3 and 4 with a lack of energy, but now at the end of cycle 7 I can go through the week without any noticeable effect. That said, I had a spell with my balance being affected on days 3 and 4, but that seems to be wearing off.
As far as I’m aware this is an ongoing treatment and will continue for as long as it is effective. I will be reviewed sometime soon and I’m hoping that the drugs and/or the treatment cycle will be reduced.
My best wishes to you and your husband.
Iain

[kevinParticipant]

Hello Rael

Since my diagnosis in 2006 I have always left my treatment in the hands of my consultant and have never delved into the depths of myeloma or my treatments. We have had discussions over certain courses of treatments and having the utmost confidence in my consultant I dont go into the nitty gritty. The only thing I have a little knowledge of is paraprotien numbers. I say this because I cant be a 100% about the details of my carfizomib treatment. I think I had about 6 months of the ‘treatment dose’ and then the same combination of drugs but a smaller dose which I think was classed as a mantenance dose until Nov 2019. I have not been on any ‘treatment’ drugs since that date and now only have my zometa infusion an a daily adcal. I have a blood test inclucing paraprotien check every 3 months prior to my zometa. last one showed still in full remission, next one due in March. Sorry couldn’t be more specific but hope this helps a little.
Best wishes
Kevin

[raelParticipant]

Many thanks for you response. Very helpful indeed. My husband and I really appreciate it when folk share their knowkedge and experiences. It’s so good to know others on the Myeloma journey are doing well on this treatment. Hopefully my husband will continue to improve.

[kevinParticipant]

Hello Rael

No problem at all. I am quite happy to answer any questions I can about my journey. If you have any other questions please ask via the forum or email me. This treatment certainly was effective for me and hope the same for your husband. The drop in the pp numbers are certainly looking good.
Best wishes to you both
Best wishes
Kevin

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