[willywinkiParticipant]

Hi, I?m Vicki and my dad was diagnosed with Myeloma last Tuesday.

He originally went into hospital 3 weeks ago, for vertebroplasty after 6 months of increasingly severe back pain. They had identified 1 crushed vertebrae, but no mention of anything else. While he was waiting in hospital for his operation, they took blood for tests and as we now know this was their first indication of the Myeloma. In the end they cemented 2 vertabrae and found the bone to be soft. He became really quite poorly after the operation, and I think we all knew there was a good chance that something else was wrong.

It was confirmed last week that he has Myeloma. We got to see a haematologist 2 days later when he came to collect a bone marrow sample. The haematologist was very nice and explained just enough for us to take it all in. Dad was moved to the Queens centre at Castle Hill, Hull, last week and he has been on drips and various drugs since to lower his calcium levels, reduce his pain and increase his mobility. I can?t say enough good things about the care he has received there and he started CDT yesterday. I?ve just heard they are letting him come home today and he even said on the phone that he thought he might not have goen home ever. He will be having radiotherapy in a few weeks as the radiographer says there is no sign of any imminent risk to his spinal cord.

I?m swaying between feeling hopeful that he can live with this, but am terrified by the ?incurable? classification we keep hearing. Dad is only 60 and has been fit and healthy being a working farmer all his life. I will have a lot of questions over the coming day?s, weeks and months but just wanted to say hello for now.

Vicki xxx

[brochoParticipant]

Hi Vicki welcome you have come to the right place for answers and support on here they are a great bunch!! Great to hear your dad is getting good care it always helps Try and take things one step at a time its such a lot to take in The life expectancy figures are very general and often a bit cautious 60 , isnt old and with all the new treaments on board hopefully he will have many years left Life is different but you do get back some sort of normality before you know it Watch out for side-effects of cdt such as loss of taste , its a bit frustrating but the trick is to eat what you fancy The steroid dexamethasone can make you grumpy sometimes just remember its the drugs and not your dad if he is bad tempered Your dads specialist nurse will be a great help to all of you they are so knowledgable and often easier to get hold of than doctors Radio therapy is so good now it should ease your dads pain quite quickly Tell him not to put up with pain there are lots of pain killers its a case of finding the right one Look forward to hearing how he gets on best wishes Bridget

[DaiCroParticipant]

Hi Vicki,

Your Dad seems to be following a similar path to mine – excepting it took them a year to work out what was wrong (they treated me for secondary bone cancer, primary unknown and it took a move from Pembrokeshire to Nottingham to get the prognosis) :-S

I had bad back problems and to be fair to the Welsh side they soon sorted that out with 6 sessions of radiotherapy that removed a crushed vertebrae and got me walking. Nottingham was like moving to a different world… they made my diagnosis within 10 days and I started on CDT within a further fortnight following joint consultations with oncologist, haematologist and lead nurse. I have Bence-Jones Myeloma, light chain driven, that records your kappa light chains rather than your paraproteins of which I have none. My light chains were at 3,500 (very high) but I was down to negligible after 2 cycles and clear after 3 – they gave me a 4th for luck.:-)

It is frightening at first but as with all things you gain a measure of perspective and like your Dad my initial thoughts were of imminent fatality but 3 years later I am still here, on Velcade after a disappointing SCT which the medics thought might last a good few years (I got 10 months but I have a lot of bone damage and they found it very, very difficult to scrape up enough stem cells to to the overload of radiotherapy which the stem cells don't much like) – so I consider myself unlucky with that but It seems I do respond well to the standard treatment so my hope lies in that direction.8-)

Yes, MM is incurable… but it is treatable and newer and better treatments are becoming available through trials, licensing and funding even as we speak. They knock it back, wait and repeat, for as long as they can and you only need to find one treatment that gives you a good chink of remission to push your survival goals further up the field.8-)

I am scared… but I am not frightened. Trust the medics, follow their advice, surround yourself with positives and kick any negative behaviours out of the front door… wherever they come from… I truly believe negativity to be the biggest poison going.

You have a wonderful bunch of people here who will advise, reflect, respect and inspire… there are always a few just ahead of you, some who have travelled a long, long way and sooner than you think you may find yourself talking to someone as I am talking to you now – as a carer with a surviving parent who is following the path as cheerfully and as fit as possibly can be given the rotten luck of the draw,

All the very best and welcome.:-)

Dai.

[tomParticipant]

Hi Vicki

Sorry to hear that your Dad has MM, honest 60 aint that old (well i hope not as am running towards 56:-D

I also was on CDT prior to a "Succesfull" transplant.

I also had the transplant in Castle Hill and agree with you the treatment and help you get from them is second to none, I am now back in Scunthorpe being looked after in ward 18:-D

Please tell your Dad that all my treatment was Pain Free 😀 , had side effects but no pain and am sure that will help.

Good Luck with it and ask away am sure some one will be able to help.

Tom "Onwards and Upwards" x

[eveParticipant]

Hi Vicki

What good advice you have just received,could not give you any more. Dai has a way with words,Bridget is always a comfort,and Tom a never ending soughs of laughter.Just what you need at this moment.:-)

Welcome to the journey,We are all ahead of you on this journey,I am a carer to my husband.Some times I loose the plot,I will not say it is easy some one described it as a roller coaster,

Good luck eve

[annParticipant]

Hi Vicky. Sorry you have been through such a difficult time and hope your Dad is feeling more hopeful now. I support my husband who started cdt in March and is now on his 4th cycle of 6. Things are going fine apart from 2 lots of infections needing antibiotics. This seems to effect the paraprotein level. They had gone from 35 to 4.5 the 1st time but went up to 28. They have reduced again but no doubt will go up again with this round of antibiotics! A roller coaster is a good way to describe what you go through. David, who is 72 next week, is a retired farmer I believe myeloma is found in agricultural workers.
I know the expectancy information can be frightening but it is a median figure and so muchappears to be happening in new treatments to prolong life expectancy.Hope the chemo goes well.

[BADGERParticipant]

Tom

Are you ok why are you back in ward 18 i hope it is nothing to bad
onwards and upwards;-)
Love Jo:-) x

[BADGERParticipant]

Hello Vicki

I was 61/2 when I was diagnosed had four months of CDT which I managed
very well had a bit of constipation and of cause DEX mood swings which I think most people get I am under Lister hospital in Herts and UCH london
I have been in remission for just over two years I could not have an SCT as MM caused me to have serious kidney damage Good Luck for Dad
Love Jo;-)

[tomParticipant]

Hi Jo

No sorry am not IN ward 18 😀 but that is who now look after me since I was discharged from "Castle Hill"

Been there today for my Zometa infusion 🙂 and am doing great Ta (sorry hope I haven't worried you :-S

Still One Fit(ish) "Onwards and Upwards" Tom xxx
and still running free:-D (lord knows what my young bride thinks about that he he)

[BADGERParticipant]

Thats alright then you had me worried for a while

Love Jo;-)

[tomParticipant]

Aww Thanks Jo 😀 but you know as I am the "Onwards and Upwards" Guy you dont have to worry for at least 10 years 🙂 and that should take me top one year off retirement (thanks to the goverment)

And hope I aint takinf this post over :-/ how are you doing Jo?

I can also be contacted on Face Book "tom lappin"

[ElizellenParticipant]

Hi Vicki, I have not logged in here for a while so hae just seen your post.

I was 60 when I was diagnosed in Feb last year after having a stiff back for 6 months or so culminating in searing pain which sent me to the GP who luckily sent me for blood tests within a week or so.

I had 6 cycles of CDT immediately then a stem cell transplant in August/September 2010.

I was lucky enough to get no discernible bad side effects from the CDT and sailed through my SCT with not even a sore throat let alone the sore bum and iritated everything inbetween that many people do. Only a reaction to one of the pills they put me on afterwards (making me vomit) delayed my discharge from hospital after 3 weeks.

I am now officially in Complete Remission and since then I have only had problems with the back pain from my disintegrated vertebra which have dislodged a fragment or two, nudging them a bit too close to my spinal chord for comfort or surgery.

I too, like your Dad, was fit before diagnosis (used to go to the gym 3x a week and lifted heavy weights there as well as doing lots of active classes), and the nurse thinks that was the reason I have responded so well with only minor problems. So it is possible your Dad will have the same uncomplicated reaction to his treatment, at least I do hope so!!

Hopefully these words of encouragement will let him (and all your family) know it might not be too hard a journey for you to travel!!

Thinking of you
Eliz
XX
X

[willywinkiParticipant]

Thank you for all your replies and words of encouragement. I told mum and dad that i had been on this site and passed on all your positivity and support. Dad is computer phobic, but my mum has discovered the www over recent years so i expect she'll be on here at some point.

Jo & Eliz it's great to hear that you're in complete remission, and that you can go through SCT without it being totally horrible, i think it's that part that dad is fearing the most.

Tom & Dai your outlooks are inspirational, and my positivity is restored and majorly boosted thanks to you're kind words.

Dad has been home one week today and his strength is slowly getting better. His pain levels have improved and he's not getting the violent muscle spasms in his back as much. Mum has got into the swing of the DVT injections after a couple of wobbles, and they've got a bit of a routine going. He had his 2nd day of chemo yetserday and is feeling crappy today, but last week he was much better by the Friday. It's funny how quickly words like chemotherapy, SCT, cancer become normal and not so scary. We just chat about it like it's an everyday thing now, which show's we're coming to terms with dad's condition. Dad seems pretty chipper considering and i'm so proud of how he is dealing with it.

I'll be back soon xxxxx

[tomParticipant]

Hi Willywinkie (great name Lol)

Am very pleased your Dad is home and you are all geting used to the words chemo through to stemcell transplant, we all have got used to them though am sure that they still scare us at times 🙁

As for the words that you read on here being an Inspiration:-D its story's like your Dad's that inspire people what with being poorly and getting over that bad patch and looking forward to the next set of treatment to put this MM in LONG term remission 😎

You all sound like "Onwards and Upwards" Folk 😀 so you all keep up the Good work 😎

Regards to you all.

Tom "Onwards and Upwards" xxx

[willywinkiParticipant]

Time for a quick update…..

Dad is coming to the end of his first 21 day cycle of CDT, and is back at the hopsital on Wednesday for his tests. I'm trying not to think about it, as i don't know what to expect. DOn't want to get hope's up and then see nothing! Do you normally see improvements in levels after 1 cycle???

His pain was managable with diazapam, paracetomol and codeine (i think), but it's been getting worse again, especially in his lower ribs. He had a really good few days on his second lot of steroids, and luckily his moods havn't been that off the scale so far when on them. The 3rd lot of chemo last week (Tues) knocked him till Sunday which was a bit of a shock as he'd been feeling better by the Friday on the first 2 weeks. Is this normal? I guess it's just teh chemo building up in his system???

Vicki xxx

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