[nickinooParticipant]

Hi all,

How is everyone doing?

Sam had his first appointment with the consultant yesterday after starting the Velcade, he is at the end of cycle 2 of Velcade but we went to get the results of his blood test at the end of cycle 1 and his kappa light chain ratio has gone down from 89 to 14 after just one cycle of Velcade!

He was just to have 6 cycles of Velcade and we had asked for 8 but as his ratio is now within the normal range (which is 3-19 apparently) they are considering only giving him 4 cycles. He will still need to have a SCT was Velcade only gives short term results (6 months or so) apparently.

He has been on the high dose of Velcade (1.3mg) but becaUse of a little peripheral neuropathy and his good response he has been lowered to the middle dose of 1mg.

I just wanted to share our good news to hopefully encourage anyone due to start Velcade, although I know that everyone responds very differently of course.

Take care all.

Nicki xx

[tomParticipant]

Hi Nicki and Sam

Well done you two and your team, that's great news and long may it continue, hope the peripheral neuropathy stays mild.

Great news
Love Tom Onwards and Upwards xxx

[VickiParticipant]

Hey well done guys that's great news!

Onwards and upwards as that Tom would say 🙂

Vicki and Colin x

[AliParticipant]

Hi Nicki

That's really good news. So encouraging for you both. Hope you both have a really good Easter weekend, don't over do the eggs!

Love Ali x

[petesilverParticipant]

Hi Nicki
I hope it all carries on like that you might be surprised, I had 8 cycles of Velcade and I was in remission for 4 years but as always all good things come to an end so now waiting to see what chemo I will be on next. Had some RT on my leg and just had a CT scan so waiting for the results of that.(my appt is Tuesday week 🙁
I always try to stay as positive as possible.
All the best
Pete

[nickinooParticipant]

Thanks for all of your kind words guys! It is a relief to know that it is working.

Pete, good luck for your appointment, 4 years is great! I can only hope that Sam will get 4 years. Sorry to read that you have relapsed though but good on you for remaining positive, I think that it is important to try and be positive.

Much love all,

Nicki x

[piatkazParticipant]

Hi Pete
Wow 4yrs remission from velcade hope I get something like that I was diagnosed Jan 2008 had C-Vamp then stem cell transplant that only gave me 18 months remission,then had Velcade for 6 cycles then a mini allo using brothers cells but only got 12 months remission but similar to you my results lightchains were ok but ended up having vertabrae destroyed by MM in my neck so needed operation and radio therapy.lucky enough I am on velcade for the second time so got some eggs left in the basket for the future,just finished my 7th cycle one more to go but only having it once a week because of the PN over the last few cycles my lightchains started to rise but very minimal so they are keeping there eyes on them.hope the rt does the trick and the scan come back good like you say you have to stay positive
All the best Ian

[piatkazParticipant]

Hi Nicki
When i was on Velcade it hammered my lightchains down from 2000 to 30 on one cycle and after auto Stem cell I only got 18 months remission but you look on this forum and many have had years everyone is different,I'm even on velcade again for the next treatment and it's hammered it again I've been diagnosed for 5 years and still going strong
All the best Ian

[petesilverParticipant]

Hi Ian
yes I know this MM is a strange one everybody is different and reacts differently to treatments. I in 2003 after going private to see what the problem was as I had severe back pain which turned out to be a fractured vertebra L5 I had a plasmacytoma which almost destroyed it so I had surgery a bi-lateral scaffold to support my spine, in 2004 a vertebra in the thoracic area collapse, that was when I was actually diagnosed with MM, then I had some months on cyclophosamide before I had a SCT which only lasted about 14 months,then I started on Velcade which had to be stopped because I had a severe bout of shingles, then restarted Velcade / cyclophosamide / and dexamethadone. when my lightchains started to rise last year for the last 5 months I have been on Revlimid and things were going well LC went right down,the I noticed a lump on my leg just below the knee this turned out to be MM so RT on that last week and a CT scan, will the best or worse next Tuesday, but I already know it will be more Chemo but what I don't know yet.
Anyway apart from the pain in my legs caused by the damaged to the sciatic nerves I feel fine and still managing to do most things I want as long as I am careful, still I always remain positive, treatments are bloody awful but there are good periods so make the most of them.
All the best
Pete

[piatkazParticipant]

Hi Pete
Thanks for the reply i know its was a long time ago but what treatment and dates were your not on treatment and on treatment it's 9 years since you were diagnosed and to have had only one ASCT is amazing,let us know how the scan results are if you want you can e-mail me on piatkaz@aol.com
All the best Ian

[BillyParticipant]

Hi Billy Here
I was on Velcade for my first treatment after 2 cycles was in complete remission so treatment was stopped and SCT was cancelled .got 4 months remission and it appeared again was put on REVALIMID and Dex AND WITHIN 3 weeks no trace again this time i am going for transplant which will happen on May 15 2013 scared to hell but maby i will get longer remission .my bloods are currently perfect the bone damage is very bad and walking is hard ,
i get bad pain in my legs from drugs and cramps are rotten but am told it will pass in time, kids and wife are my engine. was glad to get date for SCT its the first thing i can plan for a year .
sad to be putting my wife and kids lives on hold ,holidays ,future plans , did not realise how much health matters .

Regards Billy

[petesilverParticipant]

Hi All
I promised to let some of you now how I got on,on Tuesday re my appointment
well it was all good news as the CT scan results were not showing any problems ( much to my surprise)and as all my blood results are holding up fine (maybe except platelets but they are not to bad) my consultant has decided that there is no need to continue the maintenance dose of Revlimid as he said the jury is still out on this treatment anyway.
I took Revlimid for five months and my PP came right down, and he feels we will keep this in hand should any problem arise again instead of keep taking it.
So here is a happy chappy and now read for that holiday I have kept putting off.
Regards
Pete

[DaiCroParticipant]

Hi Nicki and Hi Pete,

I am a great believer in Revlimid. I was on it from the first week in March 'til mid-November 2012. I picked up the C: Difficule bug in May and it played havoc all year although it wasn't diagnosed until late July (although my ex-wife, a senior care supervisor recognised the symptoms and called it in June). I was taken to another hospital following a temp of 39.8 and delirium in November and I was seen by a haematology Doctor on the ward. She said that it was no wonder that the Revlimid was treading water because the C: Diff being what it is, it was not giving the Revlimid the proper chance to absorb. :-0 I started the Revlimid on 125 Light Chains and finished in Mid-November on 525… 400 light chains in 8.5 months alongside the nasty little bug that is C: Diff.>:-(

The medics stopped my Revlimid because my platelets had dropped from 140 to 80 over 3 months and they were afraid that they might spiral out of their control. So onto Bendamustine… but I am keeping the Revlimid firmly in my sights… the C: Diff apart I felt good on Revlimid and 400 Light Chains in the best part of a year will do for me and I hope it does well for Sam Nicki. We met a woman at the Nottingham infoDAY a couple of years ago and she had been on Revlimid for 6 years and counting… Sam is young and fit and if he and Revlimid can form a good relationship there is no telling what they might achieve together. 😎

All the very best:-)

Dai.

[DaiCroParticipant]

Hi Nicki,

We are so glad that Velcade has worked so quickly and so well for Sam. It did so for me, taking two cycles to get right down but it nuked a secondary cancer on my sternum as well so I'll allow it some grace.;-)

The next few treatments can be faced with a smile and you can face the preparation for his second SCT with a positive frame of mind with no surprises this time… you both know what's to come and while it is never easy, that 'knowing' will make the process easier on both of you.8-)

Best regards from me and Janet, we hope to see you around 🙂

Dai & Janet.

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