[Kazzam2Participant]

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this as it was 14.8 g/l when I was originally diagnosed, so at the rate its going … I had an MRI on the 25th January but I am not seeing consultant till 19th February so worrying times.

For the record, my sct gave me complete remission for 17 months, am I being greedy wanting 4 to 5 years? i have stems cells in storage, but do not know at this time what to do.

Best wishes to you all
Karen
xxxx

[meganjaneParticipant]

Hi Karen,

Sorry to hear your pp numbers are rising. It is a shock when you get the news, we felt the same when we found out my husband Phil was relapsing – we also wanted 4 or 5 years remission after the SCT. Phil actually only had one month of complete remission but his pp numbers rose very slowly. Phil started treatment again last week just over two years after his transplant.

I hope the MRI results are positive for you, for Phil the MRI revealed he had no new bone damage which was good to know.

Good luck on the 19th, we found that the pp number alone did not dictate when treatment started again, the other blood results were looked at and how Phil was feeling.

Megan

[VickiParticipant]

Hi Karen and Megan,

It’s a real blow when the dreaded relapse word comes in isn’t it. Never mind wanting 5 year remission, we wanted 10 years and more. In the end we got about the average. It is very very worrying and it’s hard to get your head around to begin with, but try to be positive it is hard!

What will the treatment option be? What treatment is Phil having Megan? Colin had velcade but that didn’t work for him. He’s on bendamustine. It does seem to make him feel ill but this is the first cycle so we don’t know what to expect…..

Good luck to you both

[meganjaneParticipant]

Hi Vicki and Karen,

I try and focus on the fact the myeloma is so individual so even if the first remission is not the 4 to 5 years maybe the second one will be, it is a case of finding the drug that works best for the individual. Phil had velcade as his first treatment (on a clinical trial) and although it worked it has left him with peripheral neuropathy so he will not have it again. This time he is on another clinical trial so the treatment is Rev, Dex and the monoclonal antibody Daratumumab. He is taking the Rev daily for 21 days in a 28 day cycle but he had a bad reaction to the Daratumumab the first time he had it last week and now he has a chest infection so this weeks infusion has been cancelled.

Karen – have you recovered from the shingles? I do hope you have good news on the 19th but we understand how hard it is between each appointment waiting for the next set of results.

Vicki – I hope Colin has good success with the Bendamustine and that the side effects are not too bad.

Megan

[Kazzam2Participant]

Hi Megan and Vicki,

Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.

Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very poorly).

I keep trying to put it to the back of my mind, (in a cupboard, as Eve used to say). My appetite is not bad, I lost weight through a chest infection before Christmas, I seem to have regained it. That was the only infection I have had since sct (crowded train, I blame for that), I had a bout of shingles in September (approx), but that is viral, and is treated with antiviral drugs. So until the 19th I will plod on. This site helps, and though I do not post a lot, I look in a lot and it has been of huge support.

Again thanks for replying, I will keep you posted.
love and best wishes
Karen xx

[Kazzam2Participant]

ps,

sorry Megan, only just seen your second reply.

That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.

Thanks for replying and best wishes
karen xx

[mhnevillParticipant]

Hi Karen

Just wanted to send best wishes. Let us know how you get on. There’s still lots in the tool box to knock it back for you.

Love

Mavis

[Kazzam2Participant]

Hi Mavis,

Thanks for your best wishes and reminding me about my toolbox! 😉

Hope you are okay xx
Take care
Love

Karen

[VickiParticipant]

Hi Karen

Just catching up and wondering how things are going? Does your get measured by pp only or do you have light chains as well?

Thanks

Vicki

[Kazzam2Participant]

Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.

My treatment starts next Tuesday (24th), I am going on the trials MUK5, I have had it all explained and have all the paperwork (my consultant said the do not do SCT for first relapse). So I will be randomised this week, they will let me know if it will be standard (velcade) or MUK 5(CCD, too many long words to type). Whichever treatment I am chosen for it will be hospital twice a week for approx 6 months, so I best get some good books! And maybe start knitting 😉

My consultant said on 27th February that she is sending me for radiotherapy for my sternum, as it is getting more painful.

Vicki, sorry taken so long to reply, I never hear about light chains, only pp and lesions,and bone damage.
Mavis and Megan thanks for your best wishes.

[Kazzam2Participant]

ps,

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

[meganjaneParticipant]

Hi Karen,

So glad to hear you managed to pop over the France. Hopefully now you have a plan and know what is happening (or at least what the options are until your hear the result of the randomisation) you will feel a bit better, the limbo of not knowing what is coming next can be very daunting.

Phil has only ever had light chains mentioned a few times, he seems to have had them briefly when he was first diagnosed but they were back to normal after one cycle of treatment, we only found out a year later about them and his light chain ratio was out of range again this year just before treatment but again, the first cycle has put it back to normal. His myeloma is measured by pp and bone damage (lytic lesions).

Keep us posted Karen, I hope the radiotherapy helps with the pain.

Megan

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