[onlymeParticipant]

Hi to one and all…

Mum has been fighting a high temperature for 10 days, with rigors/shakes. Dr thought it was infection, bacterial, no ! viral, no! it must be fungal.. No ! Biopsy showed sadly the demon is back!!

We knew and understood this would be the case one day, we have seen Mum enjoy every minute since the end of last year.. But we just didn't expect it now!! her last check up was 4 weeks ago and all was good !!

Anyway, there wasn't enough spare cells from transplant last year, we only got the minimum, so, onwards and upwards, back to the Dex and Revlamid, sure enough, today has been calmer… The temperature spikes with her body rigors have calmed down and stopped.
Has anyone else witnessed this? It's horrible to see. I'm on the understanding its the Myeloma causing the temperatures.

Last year Mum took CDT and then Velcade on the myeloma trial, both showing good responses, so we are forever hopeful that Revlamid, will work it's wonders and we can all settle for a short while once again.
Has anyone any advice for Revlamid, although I know the answers, that this is an individual disease,, and that every case is different.!!

We are all positive and grateful for the lovely team too, that are looking after Mum, and are always mindful of the difficult role they too, have to play, in tackling this awful disease and the problems with having to share such awful news to families.

Love to one and all, stay strong everyone and stay positive
Only me
Xxx

[eveParticipant]

Hi Onlyme

So sorry to hear your news,cannot help with your questions as Slim is behind you on this journey,lets hope the Rev works it does seem to buy that extra time,which in its own way helps you to adapt.

Sorry I cannot be much help,but if kind thoughts help,there is plenty coming your way.Eve

[KeithH17Participant]

Sorry to hear about your mum's relapse after only 7months,after going through so much you feel cheated after such a short remission.
I only got 8months from my 2nd sct after getting 2yrs 4mths from the first.
I start Rev/Dex on 25th of this month so like you it's still unknown territory.

Hope all goes well.

Keith.

[tomParticipant]

Hi Onlyme

Sorry to read about your Mom its a bugger this MM and you know am gonna say it but I cant add or help on this one just wanted to wish your Mum a good journey on the road to remission.

Tom "Onwards and Upwards" xx

[DaiCroParticipant]

Hi Onlyme,

My consultant broke the news gently by saying that there was an upwards move but it needed confirming over 3 months… just to make sure it was not a blip, which do sometimes happen… but the 2nd month's increase put paid to hopes of blips and glitches… we knew. As a matter of fact I knew after the 1st rise with out being told because of the associated bone pain and that was the worst time. The prognosis, due to such a marvellous response to my CDT frontline treatment, bringing my light chains down from 3,500 to zilch in 3 cycles, was 3 to 5 years… well I got 10 months… and it felt as if the bottom had dropped out of my world.

But that was 18 months ago and since then I have endured Velcade and, due to only harvesting enough Stem Cells for one transplant, have now moved onto Rev & Dex… of which I am about to move onto Cycle 5 next Monday… so far so good.8-)

Stay positive… there are some excellent looking mid-treatments, some on their own, some in conjunction with existing treatments such as Rev and Velcade, about to be licensed in the next year or so which look like being as good as any 2nd SC Transplants in terms of remission, without the palaver associated with such procedures.

I wish you and your Mum well… especially in staying positive and not dwelling too long on your current disappointment.:-)

Dai.

[onlymeParticipant]

Thank you for all of your kind words, we are all in this together, the carers, the ones who have been diagnosed, and the medical experts, but with a united front, we can all be there for each other, to offer words of encouragement, and for that I am thankful.
We are upbeat today after the initial knock, and upbeat, we will stay..
Confident and positive that we are on another journey, yet again.
Will be back on here no doubt very soon.
Lots of love and may I send positive happy thoughts back to you all.
Only me
Xxxxxxx

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