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
Hello Susan,
Kind of you to reply. It’s quite a journey and I wish you well as you continue treatment.
Best regards,
Iain
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.
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
I too had my second vaccine three weeks ago with no ill effects. I’m pretty sure that this bears no relation to its effectiveness. Remember some people are asymptomatic anyway. I’m actually part of a study that is comparing bloods pre vaccine and post vaccine. I’m just waiting for word to go for my follow-up test.
I had the Pfizer jab on 10th Feb. No side effects and only felt tenderness in my arm when touched. Hardly knew I’d had it.
Hi Becki,
Very sorry to hear about your Dad’s diagnosis – and dismayed at the way this has been handled. My own diagnosis came about as a result of several tests over a period of weeks. At each stage I was talked through possibilities. I had blood tests and finally a bone marrow biopsy before it was confirmed. I’d suggest that is the minimum required for such a diagnosis. I’d caution you to not get too carried away by looking through forum’s or on Google to get advice. Your Dad is an individual and I’d suggest that you need to be much more questioning of the medics. Chase the haematologist. Blood tests are the key in all of this. I was fortunate in that I was guided through every step. Don’t be afraid to pester if you have to. What tests were done and what led them to conclude it was Myeloma? What treatment plan to they propose? Check out this page on this site – https://www.myeloma.org.uk/understanding-myeloma/diagnosis/
Hope it all works out.
Best wishes,
Iain
Hi Anne. I had the pins and needles sensation and it’s actually a sign of peripheral neuropathy. In other words nerve damage. Fortunately it was very mild in my fingers but by the end of cycle 5 my toes, balls of my feet and one of my heels were fairly numb – and still are. But it doesn’t affect my walking or mobility.
My biggest issue on chemo, by cycle 4 and 5 was the effect of coming off the 4 days of Dexamethosone. Day 5 was fine but 6 and 7 just left me exhausted. Couldn’t do anything much these two days. One of the other drugs affected my eyesight – probably Bortezomib. My mid to distant sight got better and my near vision was more blurred. But that corrected itself once off chemo.
Things to look out for during the transplant and preceding chemo. The hospital I was in provided fruit flavoured Ice Poles to suck while the chemo was infused. I bit off 1/2 inch chunks and moved these around my mouth for the full half-hour. Keeping the mouth cool is important. For two weeks my mouth was slightly inflamed but I religiously did the mouthwashes – every four hours, night and day. I hated it but did it. I avoided hot drinks, hot food, hard biscuits and anything that required a lot of chewing, just to protect my mouth. I occasionally sucked ice cubes and made sure I had plenty of flavoured water to drink.
However, the whole thing is very tiring and I lacked the energy to read, watch TV or even listen to a radio play. For 5 days I did little but listen to music and rest. Mild nausea was an issue but there are pills for that. After that the energy returns although I was quite tired again by late afternoon. But, we are all different and your issues may be different to mine.
Hope it all goes well. You’ll probably feel rough for a couple of weeks but it’s certainly worth doing.
Iain
Adrian. I’m now 70 and was diagnosed last June. It came as a bolt from the blue. I never really felt sorry for myself but had a few tearful moments when I thought of family. How long would I have? I’m not sure if you have any other physical issues but you mustn’t think of this as a death sentence. There is such a lot that can be done and without doubt you have a future. You are just on a different path and you are going to have to manage your life in a way you never expected. After 5 cycles of VTD chemo my blood results were all back to normal. Two weeks ago I came back home following a stem cell transplant. It all went very well and I’m so impressed by the skill and resources that went into my care. Managing Myeloma is a tried and tested process so just be guided by the medics. Who knows how long I’ll have before it returns, but I live for today and hope it will be years before it’s back. Perhaps by the time it returns there may be a cure. Let’s hope so. Don’t give up on the dream to “grow old and smelly together”.
Best wishes,
Iain
Hi Anne. Sorry to hear about your diagnosis. I’m not in N. Ireland but all of us with a Myeloma diagnosis understand how you feel. I’m 69 and was diagnosed in June last year. It brings with it a range of feelings and emotions, and you worry about what it might mean for family. But I took the view that there’s nothing I can do to change this and you have to accept that it’s now part of your life. But it’s not a death sentence and you now have to adjust to living differently. Don’t allow it to hide in a dark corner and mock you. Talk to friends about it and you’ll realise, as they will, that you are still the same person you always were.
Hospitals were never part of my life; now they are. I had 5 cycles of chemo and just before Christmas all my blood readings were back to normal. I just got home two weeks ago following a stem cell transplant. It all went very well and while they prepare you for every possible outcome, I never even had a mouth ulcer. That said, I felt pretty wrung-out at times. Treating Myeloma is an exceptionally well-tried and tested procedure and you have to allow the medics to do what’s best for you. I’m so impressed by the meticulous planning and care that went into my treatment. Life will be different and there will be a few bumps along the way, but we still have a future. We’re just on a different path to the one we had expected – but life still has a purpose.
Best regards,
Iain
