[nickinooParticipant]

Hi all,

Sorry that I have not been on here for a long time, once Sam had recovered from his SCT we tried to forget about Myeloma for a little while and enjoy life. That wasn't to last as I had a nervous breakdown last July and am still very upside down with my mental health.

Sam's check up's had been reduced to every 10 weeks but just before Christmas his light chain ratio started to go up and we went back on the 4th of February to find that the had risen marginally again. Sam had to give a blood and bone marrow sample and we got the results today.

The abnormal level of plasma in his bone marrow is 10%, it has always been zero previously and his abnormal light chain level is 82, so he is classed as having had a relapse. He starts Velcade tomorrow and will also be on Cyclophosphamide (sp) and Dex, they plan to give him 6 cycles of this and see how he has responded with a view to another SCT if needed.
We are gutted, I really thought his period of remission would be longer, he had his SCT November 2010.

Anyways, that's my update, I hope that everyone is ok.

Nicki x

[ozzyParticipant]

Hiya
So sorry to hear about your relapse, my sct lasted only 21 months. I am now on Velcade & Dex.
Hope your treatment works well for you.
Best wishes
Ozzy

[tomParticipant]

Hi Nicki and Sam

So sorry to hear about your breakdown, I do hope your getting some help with it? and that also means trying to get help for both of you its a hard slog going through it all and being a Carer (hate that word??) its harder than being the patient I have been both (now the MM'er)

Its rough that Sam has relapsed but I hear Velcade works well, I wish you both Luck in this new road to remission.
Sending you Good Vibes and Strenth.

Love Tom Onwards and upwards xx

[mhnevillParticipant]

Hi Nicki

I also send my comiserations that Sam has relapsed and much sooner than you would have hoped. What a good job there are now other treatments on offer. Do hope Velcade works well for him.

So sorry you are having your own health issues when you are needing to be strong. Like Tom says, I hope you are getting support.

All best wishes.

Mavis x

[wendyduffieldParticipant]

Hi Nicki.
sorry to hear about Sam's relapse, I had my SCT in September 2011 and I am now relapsing, 🙁 my kappa light chains were last 69 but consultant says don't need to start treatment until they get to around 600 as myeloma isn't active until 600 plus if I am showing no other signs. Haven't had a BMB though. There is talk of having revlimid and dex when the time comes so I hope it doesn't come for a while yet. I am not keen to have another SCT given the relatively short period of remission and I have asked my consultant to come up with other options.

I was gutted too but have got my head round it a bit more now

all the best

Wendy

[tishwishParticipant]

Hi Nikki
Sorry about your own health issues, i know how you will have been and probably still are feeling because i had mental health issues in 2000. I had good support both medically and family and i won my battle. 12 years on it has never returned.
So sorry about Sam too, again we know how you will be feeling because my husband peter has also relapsed after only 13 months after SCT. His bone marrow biopsy is tomorrow and we get the results next Wed, we expect that Peter's treamment will be Velcade too.
So we are both on the same journey together.

Good luck
Love Trish xx

[nickinooParticipant]

Hi guys,

Thanks so much for your kind words. So sorry Ozzy, Wendy and Trish to hear about the relapses, it's gutting isn't it, at the time no one told us how long Sam might have before he relapsed but I just thought he might have had longer, given his age (he is 38 now).

Trish I am glad that your mental health is ok now and that you had the support that you needed, I am lucky that I have a good support network around me but I do worry about how I am going to cope with this (I have severe OCD) and Sam's illness as when he was diagnosed the OCD was there but was simmering in the background.

The good thing is that Sam has been referred to a therapist and I also see a therapist so we are both receiving emotional support.

I hope that everyone is ok.

Nicki x

[eveParticipant]

Hi Nicki

So sorry to hear the news,I suppose everyone waits for it all to come back,I have tried to define my f
Feelings from the very start,there is th Myeloma to get it under control,then the feeling of being in a waiting period kicks in,health wise my general health took a battering as Slims got better,we both feel the myeloma will catch up,just hoping not to soon

Nicki Slim had Velcade and had an excellent response with very little side effects,there does seem to be positive results from people having CTD then Velcade so let's hope the same for you. I know it's hard to keep up beat,it's taking valuable time from your life's ,Eve

[DizzylizParticipant]

Hi Nicki,

Sorry to hear Sam as relapsed and also having your own health issues, I care for my hubby kev who was diagnosed August 2010 had SCT April 2011 but sadly relapsed the following may 2012 and went straight onto velcade/ dex it worked well and he had the full eight cycles with the last three reduced because of PN in his feet & hands and we think because of this it stopped working for him and his lights chains began to rise and the drs put him straight onto revlimid /dex he's now on cycle 4 and now hopefully settled and last Monday 18th kev was told his count as gone down from 450 to 42! We were thrilled with the results and so whatever treatment Sam as here's hoping it kicks MM into touch once again!

Goodluck and keep well both of you love liz & kev xx

[nickinooParticipant]

Thanks Eve and Liz & Kev for your kind replies.

Eve I am glad that Slim has had a good response to Velcade, I hope that Sam does too.

Liz & Kev, great news about Kev's count!

I worry as I read somewhere that the first period of remission after the SCT is usually the longest, I hope that this proves not to be the case.

I hope that everyone is having a nice weekend.

Nicki xx

[VickiParticipant]

Hi nicki

Sorry to hear you are having a tough time, and that word relapse, I hate it! I can understand how you can develop some emotional, mental health issues in dealing with this condition, as supporter or sufferer! It is so challenging and the fatigue of being a supporter and the worry of caring for the person you love can have some significant impacts. Even though Colin is now in remission, although cock a hoop with the results, mentally it'll take me a lot longer I think to relax a bit! Glad to hear that you and Sam are having therapy….they're worth their weight in gold 🙂

Thinking of you both

Vicki and Colin x

[tomParticipant]

Hi Nicki

Dont forget when you read things online or in papers all MM patiants are differant so I would (and do) just concentrate on the good bits 😎
Stay well and strong.

Love Tom Onwards and Upwards xx

[nickinooParticipant]

Thanks Vicki & Colin and Tom, Vicki & Colin fabulous news about the remission!

Sam is currently cleaning the oven, he is bouncing off the walls on the Dex but isn't feeling too bad on the Velcade on the whole. On the plus side I have less housework to do as he is doing it at silly times in the morning like 7am when he can't sleep! He cleaned my car before I left for work the other day! 😀

I hope that everyone is having a nice weekend.

Nicki x

[tomParticipant]

Morning Nicki and Sam

Yes we had same at ours when I was Dexed hoover out and doing it at strange times of the day, but to be fair i had days when I came off the dex and had to do the living/dinning room in two sittings lol, I was just too shattered to be pushing the darn hoover he he.
You could tell your workmates and Sam can make extra money car cleaning before they went to work lol.

My Young Bride (Elaine) and I are going to the Golf Club (posh in it) for a friends 60th Birthday for Sunday Lunch (still posh) 14 in all going so it should be a good afternoon, But Annette is a bit posh thats why we are at Golf Club normally we would all go to local club and get rat faced and eat crisps and nuts lol but I can do posh as well (i think lol)

Stay well and make sure Sam knows wher the oven gloves are

Love Tom Onwards and Upwards xx

[VickiParticipant]

Tom you are hilarious!

Brightens our day…..would it be posh crisps and nuts or just common peanuts haha! 🙂

Vicki and Colin x

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