[stevo72Participant]

hi guys my name is steve im 39 and live in sussex, i was diagnosed mm in june this year after 5 months of no one knowing why my kidneys were failing, so after 2 kidney biopsies and a gazillion blood tests my consultant sent me for a bone marrow biopsy "such joy" to then be told i had mm which i know i shouldnt but it made me laugh because 2 days before me and my partner said at least its not cancer ha ha' so here we are' ive been quite lucky no symptoms except kidneys which is not good but could be worse' a couple of questions i have are; my oncologist is not the most forthcoming of people and makes feel like im being a nuisance if i ask questions is a bit odd but ha ho the question is has anyone had my symptoms and had a sct as ive been told poor kidneys means no?secondly im on my seventh cycle of velcade with one more to go but about 4 months ago i developed lumps in my eyelids i wondered if anyone else has had this' thanks for listening guys looking forward to making new friends

[piatkazParticipant]

Hi Steve

Welcome to the site,Sorry cant help with the issue with kidney problems I just have issues with bone damage but after treatment,radiotherapy and surgery I'm doing well.I see you mentioned eye trouble I am on Velcade also, This is the second time I've had Velcade on the first lot of treatments (Nov 2010)I suffered with eye trouble swollen eyelids,lumpy, sore and itchy my specialist said it was a less common side effect with Velcade and gave me steroid eye drops, this helped a great deal never cured it but made it easily tolerable.When all cycles were completed it disappeared after a short time,to prove it was the Velcade I went on my second journey with this drug in Sept 2012 and exactly the same happened.
Hope this helps
All the best Ian

[BADGERParticipant]

hi Steve

I was diagnosed jan 2009 MM renal failure and pnuemonia i had CDT which gave me 3yrs 6months remission I chose not to have an SCT as would have put in dialysis kidneys still hanging on I have just started sub Q velcade on second cycly with reduced doses of some of the drugs to protect the kidneys so chin up i am sure you will be ok i have premidrinate once a month just 30mgs over and hour and a half this is the kidney dose
Love Jo x

[stevo72Participant]

thanks for the reply my onclogist did not have a clue,thanks for putting my mind at rest

[stevo72Participant]

hi jo!! sorry to be a newb but what is cdt? also what was your creatinine level when you were offered sct? many thanks

[BADGERParticipant]

Hi Stevo
CDT is cyclophospomide Dexamethasone and Thalidomide my creatinine
was 500 on collapse i was at about 350 when it was considered but there would have been grave danger of the aggressive chemo fully destoying my kidneys i didnt want to risk it but i am a lot older than you your body
may take it you may need a long discussion with your consultant there is some one called Scott who also went down the same route as me he puts in a post from time to time we have got by for now please let us know how you get on
Regards Jo x

[stevo72Participant]

thanks jo ill have a chat with my team see what they say,is anyone on here being treated in chichester?

[PerkymiteParticipant]

A warm welcome Steve to the site, as you have already found there are some nice, friendly and helpful people on here.

Best of luck with your treatment.

Kindest regards – Vasbyte

David

[stevo72Participant]

many thanks its nice to know im not on my own and that theres lots of support here' im getting a lovely pressie on xmas eve of velcade cyclo and dex so should be a fun xmas day lol, merry xmas all

[tomParticipant]

Hi Steve
A warm welcome to the site.
Am sorry I can't help re kidneys but I see you have a reply that has helped.
Good luck on your road to remission .

Tom " onwards and upwards "

[stevo72Participant]

Hi tom many thanks I thought I knew quite a bit a about mm but after looking on here it seems not lol merry Xmas to you and yours

[VickiParticipant]

Hi steve,

Welcome :-), to the group no one would prefer to be in! My partner Colin was diagnosed at 55, having had no symptoms except a bad back, which he's had on and off for years so it seemed no different. Bottom line was he was diagnosed with mm October 2011 and went through induction treatment and had his SCT October 2012, so we are in the getting a bit better stage.

We can't really answer either of your questions but just wanted to let you know there are always options and just wanted to give you some encouragement. I have heard and read that some professors are suggesting that SCT is not necessarily the best approach and what it puts the Patient through is not always worth it as you can get the same results with medication, without any SCT.

So good luck, this forum has been help to Colin and definitely me as his supporter!

Happy Christmas x

[stevo72Participant]

Hi thanks for the reply glad it's going ok for you I have to admit I've not been taking it to seriously not taking all my meds etc but going to knuckle down after Xmas,when I was diagnosed my pp was 125 and thought that was low lol how wrong I was after looking on here, merry Xmas to you and yours

[PeterJamesParticipant]

Hi Steve
To be blunt I would take MM very seriously . It is a silent killer at only 39 your life is , I would have thought very precious
If I were you I would take a long list of questions to your encologist & not leave until you get satisfactory answers
You need to mug up on MM , knowledge is power !
With a pp of 125 , very high I think , what is it now ?
I would hope that you have had very regular blood tests & the pp was now well down
Missing medication & not taking MM seriously is a short cut to a short remission
Sorry to be so blunt , but life itself is very precious , do you have family / friends to support you , again very important
Happy Christmas
Peter

[AlexBParticipant]

Hi Steve

I'm 39 too though my symptoms have been different from yours – my kidneys are ok, but I've had a lot of problems from bone damage. I've been on velcade and dex for months (and doxorubicin too) – they're manageable though you have to learn to ride the side effects.

Take all you meds. People die of infection because their myeloma and treatment between them suppress their immune system. No point putting yourself at even greater risk.

I was very active and fit – never been in hospital – until I broke my back while out running in March. One thing I have learned in the last few months is to face up to the fact that myeloma is real, and serious. We have the strength to fight it, but we also need to give our bodies a chance.

I'm in bed today. I'd like to be out on the traditional Boxing Day Walk with my family, but Christmas Day wiped me out and I need to regain my energy. I've learnt (the hard way) to listen to my body and not pretend (as I have all my life until now) that I'm superman.

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