[GillParticipant]

Hi Tom so sorry to hear your news but there seems to be a great many new drugs coming on the scene to keep mm in control.

I know that everybody on here has their fingers crossed that your medics find the right one for you to kick the blasted disease into touch for a long time.

Much Love Gill xxx

[Kazzam2Participant]

Hi Tom,
So sorry to hear this, you are always so positive and I am sure your approach to this dreadful MM, will have you back in remission in no time xx 😉

Thinking of you, good luck

Love and best wishes

Karen
xx

[scott9Participant]

Hi Jan

What a huge disappointment that your Myeloma is creeping back. You were only telling me recently about taking curcumin to help keep it at bay. Have you stopped taking it now or are you sticking with it? I’ve only just started to take it and am hoping I might get two or three years remission. I’m on 1 pill a day at the moment but will gradually increase the dosage.

All the best

Scott

[rebeccaRParticipant]

Hi Scott,
Just wondering (if it’s not too personal!) how are you kidneys after SCT last I heard from you they went up then were going down – have they now levelled and got a bit better after the procedure? And at any time in your SCT process was there talk of putting you on dialysis to assist the process? I’m waiting and waiting for an SCT date and considering changing venues o one where they do not have dialysis on the same site and am not sure how important that is really for SCT as after harvesting kidney function increased to 27 – 28 e-gfr.

Regards

Rebecca

[scott9Participant]

Hi Rebecca

My kidneys have leveled off at where they were when I started the SCT process ie at about 20%. They actually improved slightly while I was in hospital having the SCT. They said it was because I was on so many drips that the kidneys were well and truly flushed. There was never any mention of dialysis. Funnily enough I’m due to go to Kings on Thursday to the renal unit for a check up. They will take my bloods and if there is a problem I’ll be told soon enough.

I’m also due to go to London Bridge hospital next Monday to get the results of my bone marrow biopsy. I’m glad I don’t have to have too many of those biopsies as they are not exactly pleasant.

Keep fighting.

Scott

[adamsp41Participant]

Hi Tom…so sorry to read your sad news…but I am sure you will keep as positive as ever…and give it another damn good go with whatever the consultants decide upon and get another 4 years out of the next batch of treatment…stay safe…Phil

[janwParticipant]

Hi Scott

Yes, I’m still taking my daily curcumin and I still believe it’s helped me over the past three years of remission. After a bad cold and chest infection last Christmas, my light chains appear to have increased at a much steadier rate over the last year. Although that was my only cold for three years, with no other infections, which is good going especially as my neuts always remain low at around 1.3. Prior to diagnosis with myeloma, I regularly suffered 3 – 4 colds per year. However, I was working with very young kids on a daily basis and they quite happily spread their coughs and colds to those around them!

I hope the results of your bone marrow biopsy are good.

All the best. Jan W

[JandKParticipant]

Tom just keep your positive onwards and upwards met someone the other day who had 4 years then it came back had treatment and it went away again for 5 years :0))

Jo x

[DizzylizParticipant]

Hello Tom,

Sorry to hear your news,am certain your positivety will help you through this again,
I will keep my fingers crossed you get another four years! I know I’ve not been posting for some time (been poorly ) kevs not doing to bad he’s on cycle 12 of revlimid and at the moment he’s stable, hopefully I will now continue to pop in to the forum a lot more now I’m up to it
Can’t believe how many new people have joined also nice to see some familiar faces,
Keep on being positive Tom like I know you will.

ONWARDS and UPWARDS Tom
Thinking of you liz & kev xx

[MothasParticipant]

Hi Tom, crap news why is it always just before xmas eh.

You’ll probably be a candidate for a 2nd SCT as you had such a good response last time round

all the best mate

tom

[HarmonyParticipant]

I’m a newbie Tom so I’ve no advice. I just wanted to tell you that I hope the new treatment goes well. You’ve offered me positive words in the past. You are such a positive person that I’ve no doubt that you’ll find the energy and strength to tackle this.x

[Ang287Participant]

Hi Tom
Sorry to hear that your MM has returned. I have enjoyed reading your posts as you are so positive which is what is needed to beat this and I am sure you will continue to do so whatever treatment is decided upon. Graham has just finished stem cell collection and awaiting a date for first SCT and I hope he also gets at least 4 years before it returns. Hope you do as well on your next course of treatment and I wish you good luck.
Best wishes, Angela

[HelenRParticipant]

Hi Tom,
Sorry to hear that… But 4 years is a good innings and just think of the nice guy I meet sometimes in clinic: he got a 7 year remission and then a 10 year remission next time around. So maybe you’ll beat 4 next time – I dare you to!
Good luck with the BMB,
Helen

[VickiParticipant]

Hi Tom,

I’m having real problems logging into the new site. I’m so sorry to hear your news…..your drug free remission has always been something I think of when I get down! You are a real positive guy so here’s hoping for you that that next phase of treatment will whack mm into touch again! Tom you have clearly not been drinking enough vodka for this to come back! It’s an absolute bxxx however if anyone can have a positive frame of mind and crack on with it, you can 🙂

Has the numbers been on the rise for a while as a slow burn increase? Best best best of luck with this next phase! Our consultant said there are loads of new treatments that can suppress this condition!

Vicki and Colin xxx

[gina45Participant]

Hi tom, you was another that I remember from when mum was ill. I am so sorry to hear your news. Now you have to fight the bugger and stay positive. I hope everything goes well for you xxxx

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