This topic contains 16 replies, has 17 voices, and was last updated by 
meeuu 13 years, 1 month ago.
Que sebugger, sebuggera, ah well, que sera, buggera, buggera.
SCT last March… it looks like its lasted a year. I had my eight week consultancy today and it looks as if activity has started. I was told I was 'in the top 10%', whatever that means – and that I could tentatively be looking at 5-8 years…??? I had responded well with CDT, (June – October 09 – I had 4 in all – my light chains were 3,500 at the start of treatment – negligible in September after 3 cycles) followed by a SCT four months later (in remission before and after the SCT). I feel quite good at the moment, physically as good as I have ever been since initial diagnosis of bone cancer with primary unknown in April 2008 (diagnosed with Myeloma in June 09).
I have Bence Jones, light chain myeloma (paraproteins are not a factor) and apparently my light chains have gone from 22 in January to 94 today… sounding alarum bells for my consultant. She says that there is a slim chance that this is a blip or spike that might drop to acceptable levels but from her body language I am not going to hold my breath.:-/
So its back in 4 weeks to see then (I took in a 24 hour urine test today which may or may not show activity – but the blood tests will). If the No's have stayed the same or risen then I will be looking at starting on Velcade for up to 8 x 3 week cycles. I might call on Velcaders here to let me know the drill and what/what not to expect if that is the case.
I feel flattened, janet is quietly distraught… we both thought/hoped that I would have 2/3 years at least. The good news is that even 94 is very low (see the 3,500 above) but after two consecutive rises I believe that my consultant believes that its back. 🙁
Que sebuggera.
Dai.
Dai
Im so sorry to hear your news. I /we know all too well how bad you feel. Peter only got 5 months of remission which is nothing and classed officially as a failure of SCT. Following which he had 4 cycles of velcade which induced DVTs in him, accompanied by pulmonary embolisms so beware of breathlessness on velcade to make matters worse it stopped working after the 3rd cycle
Peter was at over 2000 before he started velcade and was feeling and looking absolutely better than ever! It was a real let down to go onto medication again and see him laid so low with it.
He also has bence jones (light chains) and following velcade went up to over 8thousand. believe it or not he still felt well, compared to now!
He was told there is likely no chance of a second sct as less than a year is classed as a failure even though he has the lovely harvest waiting to be used. It was suggested that a sibling donor might be more successful but more dangerous too.
Right now we are waiting to find out how the 3rd cycle of Revlamid pans out before making any plans. Once again Im sorry your finding yourself feeling gutted, but once the decision to start medication starts you will put it all behind you
Best wishes Min
Ahh Dai, You just ruined my week, so sorry to hear the bad news. I thought you were in the clear and up and running. It must be devastating for you, having been given a possible 5 to 8 years.
I did not make remission ? plateaued I am told ? so I am not really expecting too long before I have to go to the next phase. I am just praying for another 12 months of useable life. All the very best of luck to you
VASBYTE my friend vasbyte
David
p.s. Vasbyte is a South African word meaning ? Bite hard
Oh Dai,
I know how this feels this is the situation I found myself in last year with rising light chains which did plateau after a few months but caused a massive amount of bone damage in my case. Like Min says I am considered a failure with 11months remission so it's been suggested I consider an allo. I've had four cycles of CTD having had VAD as induction therapy and am currently having thalidomide as maintenance. Listen to your team and they will guide you and I hope that you can get your head around all this it's really difficult I know. I set myself goals, first was to see my daughter through her 11 plus, second to see her start secondary school, third to see my sister married (26th April this year) and next goal my son's AQE which is next November and then secondary school. I find on the dar days focusing on my next goal helps. Sending you positive vibes and hoping that you do plateau.
Pamelaxx
This is truly devastating. Good luck. The Velcade certainly seems to be working for me – but I seem to be one of the lucky ones.
Que bugerra
N
Dear Dai,
I'm sorry about your news. I do feel it's premature to be re-evaluating your prognosis. There are so many patterns of response and relapse. I don't know how many myeloma blogs and case histories you've read. There are people who actually 'fail' an ASCT and then go on to live ten years. Admittedly, they respond to other myeloma drugs, on their own or in different combinations.
What matters is that the disease in brought under control and that the 'cost' of doing so doesn't kill you. Some people have very long remissions; others require a gentle 'drip feed' of drugs, and yet others go on to achieve stable disease or even a remission after a new aggressive chemo. I'm not an expert, but my guess is that if you're reasonably fit and haven't exhausted every treatment option in the book, then there's many reasons to be optimistic. Another thing that happens to some MM patients is that after a particular therapy they have a relapse but then their disease develops more slowly after reaching a certain level. My original onc told me that it is difficult to predict which treatment will give the longest remission. It might be the second or third line treatment. What matters is that your myeloma doesn't become totally unresponsive to everything and that you are well enough to withstand treatment. My advice is that you should eat well, exercise and have lots of plans for the future. Also ( easier said than done), try to live in the NOW and focus on what potentials you've got on a daily basis. From what I can tell, I think you seem to be a person with many talents and with much to contribute to those around you.
Best,
Eva
Dear Dai I know how devastating it is to be told the beast is back and it seems very unfair to have had a relatively short remission. Once treatment starts it becomes easier to accept and just get on with it Go and do something nice this week and put mm to the back of your mind for a while Love to you and Janet Bridget x
Chin up Dia
You have been so positive upto now I am so sorry the beast is back so soon
but you are a strong character so i am sure you will cope with whatever this thing throws at you next, look at all the new drugs that are in the pipe line that must give us all hope for the future. I could not have a SCT as my kidneys are to badly damaged so thats my hope.
Love Jo x:-/
Dear Dai – I am so sorry that the bugger has come back and I well understand the feelings you both have right now. I know how I felt after my first remission and was devastated. You didn't move home for nothing and that fighting spirit will come back to you once you get the new treatment regime. I wish you good luck as you come to terms with your new situation and new treatment.
Love, Gaye 🙂
Dear Dai
I also am sorry to hear your news. Although I followed your posts, I id not know anything about your treatment. What I do know is that you are inspiration to me and am sure a lot of people on the forum.
i hope the new treatment goes well for you andd as GAye says your fighting spirit comes back.
My very best wishes
Jean xx
What a Bummer!!!
I am so sorry to hear your news. I think it must be worse when you feel well. Stephen got about 18 months and felt brilliant when back ache started and he got told OOPs it's back. I am not sure about the exact time as I was the headless chicken that managed to hide my headlessness from everybody but collapsed into myself. Janet will know what I mean.
Stephen is on Velcade/Dexamethasone, hoping for a second bite at remission and looking forward :-/ to a second SCT later this year.
Keep in touch, much love from Gill
Oh Dai I'm so sorry to hear your news, and you too David.
I wish things were different for you both, this illness drives you round the bend.
Both of you try and fight please. I know its a big thing but if you fight I'll fight for you at this end.:-/
Love to you all
Roz
Dear Dai,so very sorry to hear your bad news,you and your wife must be devastated, i do hope they can find a cure to help prolong life alot longer,stay strong Dai and take care Shirley x x x x
Dear Dai,
I am so sorry to hear your news, dont know what else to say, except my love goes out to you and your wife, and I hope the next phase of your treatment goes well,
Mari
Dear Dai,
I've kept reading this post and wondering what to write. Still don't know but wanted to say that I've been thinking of you lots….keep that chin up as much as possible as you are a real inspiration to all of us that have read your posts over the last year or so.
Here's hoping it is a blip and they have it wrong, but if not, velcade doesn't seem to be too bad (I started 2 weeks ago) although it does exhaust at times. But so long as you go with your body on it, I am sure you will be fine.
Good luck with it all and thinking of you
Debs x
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