[mich2503Participant]

Just wanted to say hi. I was diagnosed with Myeloma 6 weeks ago following kidney failure. Its nice to know that I am not alone.

[CarolsymonsParticipant]

Hi

You will find wonderful supportive and knowledgeable people on this forum, so keep posting. I am 13 weeks post transplant and recovering well, having been diagnosed 1 year ago. Have you started treatment yet?

Carol

[mich2503Participant]

Hi Carol

Thanks for replying. I am having Velcade injections twice a week, I have had 8 so far, and taking Dexamethasone. This all came as A total shock, though I had been poorly for a few months no-one realised how serious it was until my kidneys failed and I was rushed into hospital where they also  diagnosed the myeloma. its good that there are other people who are going through the same thing that can help.

Michele

[CarolsymonsParticipant]

Hi Michelle

Are you in the UK? If so, you are lucky to be offered Velcade as a first line treatment. Most of us on the forum could only get CDT (cyclophosphamide, dexamethasone and thalidomide) initially, unless we signed up for a trial. I was also shocked by my diagnosis. Although I was 63 years old, I don’t think anyone my age was fitter or healthier than I was. That is until the myeloma gremlins ate my collarbone! In many ways it was fortunate though, as it gave me an early diagnosis. The treatment is harsh, but unfortunately unavoidable!

Carol

[mich2503Participant]

Yes I am in the UK. I was lucky in a way because the consultant at the hospital when I was admitted was a specialist  in Myeloma and very much involved in research, I don’t know if that had a bearing on my getting Velcade straight off, and so far I have not had much in the way of side effects thankfully. I was only 49 when I was diagnosed, which is relatively young so although looking back I had many of the symptoms it wasn’t picked up. I have some erosion in my bones but so far it’s only in a couple of places and not too bad thankfully.

michele

[PerkymiteParticipant]

Hi Mich, Welcome (?) to our very exclusive club!

You sound as if you have got off to a flyer with treatment, well done, and a Specialist Consultant to boot. it all augers well for you I think.

I was diagnosed in July 2009 when I broke my neck getting out of bed! Myeloma had eaten my 4th vertebrae, my head is now held up with some great internal scaffolding, if you imagine a church steeple with scaffolding you will get the idea.

My reason for posting is that having been fighting this decease for 5 years and never getting into remission, I started on a drug called Revlimide and low and behold I am now in “good remission” my Consultant’s words not mine. So your journey may get a bit sticky some times but never, never give up!

kindest regards – vasbyte

David

[rebeccaRParticipant]

Hi Michelle, your story sounds like mine diagnosed at 50 in nov 2012 following months of being unwell and told by Dr it was a non specific virus and labyrinthitis when the symptoms were actually kidney failure but no blood test done. Eventually when I had a blood test was told to go straight to hospital as my kidneys were at 5%. I was on velcade/dex ands I do think this is one of the easier treatments as apart from the dexy days it just made me tired – moreso as time goes on – but mine was not enough to stop me doing anything but was totally zonked out as soon as I went to bed – but I found this to be a big plus point as the sleepless nights worrying/wondering in the early days were truly awful. Velcade became a frontline treatment only in March this year but you would have got it anyway, like me, as it is very kind to kidneys. Have you kidneys recovered yet? mine only partially recovered but I had my SCT at Xmas and can honestly say I am 100% totally back to normal now – so don’t despair it’s a slog but there will be light at the end of the tunnel and you have youth on your side.
Stay strong, Rebecca

[mich2503Participant]

Hi Rebecca

I’m glad to hear that you are back to normal now. For me that seems such a way in the distance, although I know I can get there.  i am currently having dialysis 3 times a week, they think my kidney function has improved slightly but not enough, though they are still hopeful that they will recover.  I do get very tired on the dialysis days but otherwise am trying to live as normally as possible, hopefully one day I can get back to work as well.

Our stories are so similar and it’s good to know there is light at the end of the tunnel.

Best wishes

michele

[rebeccaRParticipant]

It’s early days for your kidneys so try and stay positive – it took mine a while to get to 16 gfr and after 4 months (from starting) I was told to expect no further improvement but todays reading was gfr 32 – my highest! I have found, tho’ I may be an exception, that kidney function improves with any improvement in light chain reduction – I SCTd with a kidney function of 26-27 and it looks like the SCt has helped also. I never had dialysis – tho was so close – the reason I was given later was because I could pee large quantities (so kidneys not shut down) as well as drink large quantities – and the treatment reduced the bulk of my MM in the 1st month. It’s hard to say which is the scariest MM or kidney failure but when I was at 16 gfr I was essentially leading a normal life and going to the gym and playing tennis which is really weird as you read they start talking dialysis at say below 18? Can only think MM is a bit different to other kidney disease. I also got in touch with another MM person who encouraged me not to give up and he sent me his renal charts showing that over a 3 year period they had improved – he was very well read on food influences for kidneys, exercise etc. which he shared. So exceptions can happen. He also had a MM friend who was on dialysis (pre and post SCT) and his kidneys improved and he came off dialysis – but it took 3 years. I SCT’d at Leeds and they had SCT’d people on dialysis who came off dialysis after the SCT – so I do think there’s a strong correlation with your nos. Do you have light chain (Bence Jones)MM?
Stay positive and focussed (its the only way to get through this in one piece) and always remember we are all individuals and all individuals react differently so they cannot know for sure if its as “good as it gets” re kidneys because that’s what they told me (and I’m now double that number) -and I’m sure countless others. You can do this.
Good luck
Rebecca

[Author]

Posts