[JonnyPParticipant]

Aplogies to the moderator – this is attempt number 3 (And I'm supposed to be vaguely intelligent 😀 ).

Hi my name is Jon and I was diagnosed with Myloma last Tuesday following a bone marrow biopsy. To be honest, we were already nearly certain that the news wouldn't be good because I had a call on Friday evening suggesting that the preliminary results from some blood tests were pretty conclusive.

I realise that it is very early days and I don't really know what I have in store for me, but I think that I have managed to get things into perspective and following a shaky weekend a week ago, I at least feel that things are moving forward. Being a pragmatic type, this helps as does the wonderful support from Leicester Royal Infirmary, my wife and my family. I think despite the bad news, I have been relatively lucky so far.

Firstly I was able to call upon the services of an orthopaedic surgeon through private medical insurance. He more or less diagnosed the problem within 2 weeks following an MRI scan and blood tests. All this after 6 monthd or more of back pain which turned out to be due to 2 fractured vertebrae and 2 or 3 compressed fractures (no wonder it hurt).

Secondly, my wife, family and work colleagues have been very supportive. My first major discovery is that what has worked for me so far is to tackle this thing head on and most importantly I have been able to talk through my fears and uncertainty with my wife, warts and all. This has helped me so much up to now that I have been amazed, although I realise that what works for one doean't necessarily work for everyone else.

Thirdly, I have been selected to take part in Myeloma X1 using the CRD drug combination. I feel this must be a good thing when taking all the variables and information into account.

Sorry for a long introduction, and I hope my optimisn isn't shot down too quickly. Also, I hope I don't come across as arrogant, I'm just trying to be positive. I look forward to meeting new friends on the site and I hope very much that I can both receive and offer support.

Best wishes to you all.

Jon

[michelleakitt29Participant]

Hi Jon, sorry that you have had to join the club, however, hello and welcome. I am not a sufferer but my mum is, My mum tends to bury her head in the sand, me on the other hand needs to know!!! I have found great help and support on this site and met some fantastic people, support and friendship….some of us are avid facebookers lol. You do not come across as arrogant and being optimistic is your way of dealing with this, like you say not the way for everyone, wouldn't do for us all to be the same tho. Its great that you have found the support you need in your wife, family and work, and that you can talk through things with them.
My Mum has multiple fractures and 2 compressed vertebrae in her back, she went from being a fit healthy woman to being disabled and in a wheelchair, she is 65 now and 63 when she was diagnosed, she was unable to walk and now she is mobile in the house, and that is with sheer determination that she has been able to do this. I wish you well with your treatment, keep us updated with your progress. There is a couple of people on here on the myeloma X1 trials so I am sure the they will be able to advise you further on that.

with love michelle x

[tomParticipant]

Hi Jon
May I welcome you to this Great site 🙂 its not one we would want but seen as we have MM its the best going, as well as the Under 50'S 😎

Am same as you in the fact My Wife Family and Friends have all been very supprtive through all this and we (even i) have a lets get this party rolling and sort it sort of mind's:-D

Good Luck on the X1, as for me I am in remission at the moment after my SCT in December 2009 so all is Cool.

Will catch you on the boards over the weeks.

Tom "Onwards and Upwards"

[brochoParticipant]

Hi Jon welcome to our merry little band , yes we are mostly merry ! Your head must still be spinning but its great you were able to get a fairly early diagnosis. In my experience, I was on the Myeloma X Trial , you get the very best of care whilst on a trial and hopefully you will sail through it without too many hiccups. Have you got your pain under control now? I was eventually diagnosed after a year of agony , it turned out 3 vertebrae had disintegrated completely .I had a spinal reconstruction and am now known as metal micky! I take mst morphine for pain relief which usually does the trick for me I hope you can keep your lovely positive attitude for a very long time and dont forget we are all on here for you if you need support Good luck Bridget

[DebsParticipant]

Hi Jon,

Welcome to the MMUK site and I think and hope you'll find it a great place to get info, support and friends! I don't think I could have managed without this and the Under 50 site. That, and like you say, a hugely supportive group of family and friends.

You don't come across as arrogant at all….very positive, especially considering how early it is for you. Keep that up (but don't forget you're allowed down days too!). You sound like you have a massively supportive group around you, and I have to say, if you have a partner you can talk to, I think that makes the world of difference.

I'm also on the Myeloma XI trial. Got picked for CRD too so might be able to help with side effects etc, although mine were limited 🙂 I think it holds such potential and think we are very lucky to have had the chance to try it out. If you want to talk it over more, feel free to ask more questions….I can send you the spreadsheet I did for it too if you want it? I found I needed that to remember what time and when to take the various drugs!! Otherwise I'd forget! When do you start on the drugs? I think I may be about to move to Velcade as it hasn't worked as well for me as we had hoped. Will know more tomorrow 🙂

Hope that they have you on lots of pain killers for the back and that all is good (as it can be…lol!)

Keep smiling 🙂
Debs x

[JonnyPParticipant]

Thanks to everyone for the kind words. I think my pain is relatively light compared to some. Co-codamol seems to take the edge off most of the time, but I keep straining other muscles whilst trying to compensate for a dodgy back.

I have an appointment with a radiologist (or is it a radiographer? Too much info') tomorrow, so hopefully that will start the pain relief process. I am also hopefull of some surgery to sort my back out ~ percutaneous vetrebroplasty, I understand; it just rolls of the tongue doesn't it. 🙂

Any idea how soon that procedure can take place and is it always a viable option?

See you soon; virtually that is.

Jon.

[JonnyPParticipant]

Thanks Debs,

I officially qualify for the under 50's, so I'll take a look soon. I'm sorry to hear that the results were not perfect for you, finger crossed with the Valcade.

I have been preparing a spreadsheet for the same reason, but I'm not sure it is fit for purpose, a bit overly complicated I fancy and based on some guess work at this early stage. I would like to see your version if you don't mind, thanks.

My next appointment is on Thursday, so I guess Thursday or Friday is day 1, although I have already started on everyting except the Cyclophosphamide and Revlimid.

It's good to know there is help out there, thanks.

Keep smiling, Jon.

[PerkymiteParticipant]

Hi Jon, welcome (?) to the group.

I like you need it out in the open. I hate the whispered words said in a corner that you can just catch out of the corner of your eye. My wife and I have discussed my Myeloma down to where I want to die! Not that I intend to die for a few more years you understand. To support this openness I send a Medical Update email to all my friends when there is anything relevant to report – such as details of a major appointment with the Consultant. I find that a great ice breaker, I started with 10 emails and the list has grown to 28, all have asked to receive it. When I meet friends now there is always an open discussion about my condition and treatment ? nobody is afraid of embarrassing or upsetting me by asking awkward questions because there aren?t any!

You will find this group very supportive and quite knowledgeable and if they do not know the answer there is always the MyelomaUK Nurse who is ready to help every day. Can I suggest if you have not already done so you have a good look around the site; there is a great deal of information here.

The very best of luck to you with your treatment
Kindest regards
David

[JonnyPParticipant]

Hi Perkymite,

You're very kind and very active on the site, as far as I can tell. I will take a good look around, although my wife is the internet guru – I think she has devoured everything already 😎 .

I'm very impressed with your attitude, I hope that your lead will inspire me on the bad days nil desperandum and all that.

Jon.

[PerkymiteParticipant]

Hi Jon,

The South African branch of my family gave me a good South African saying to use when things get a little tough. [i][b]Vasbyte[/b][/i] it means bite hard. I use it all the time now it has so much meaning in it if you think about it.

Kindest regards, vasbyte
David

[GillParticipant]

Hi Jon

Sorry that you have been diagnosed but welcome to a site that nobody wants to join but is sooo supportive. It is my husband that has mm but although he is really interested in everything that is posted on here he is a moron when it comes to computers (brilliant carpenter but technically challenged)

Good luck with your treatment (and your head gear:-D ) Do keep us all posted as to how you are getting on

Gill

[JetParticipant]

Hi Jon

Like you, I am under 50 (will be celebrating, all being well this July!) and was only diagnosed on 4 Feb. I think I was very fortunate in that I only had a few months of strange back pains and loss of appetite/nausea (caused by hypercalcaemia) before I got quite ill and couldn't eat at all on Xmas Day. It took them a month to do a blood test that checked calcium levels, and thereby find excessive calcium in my blood, but once they got that, I was whisked into hospital for IV treatment to lower the calcium, a CT scan to check my bones, bone marrow biopsy and diagnosis the same day! It was all so quick that I didn't have time to think about it.

The minute I was diagnosed, I was put on Dexamethasone the same day, which was way too much fun. Flying high and wild crazy creative, exciting ideas about all the things I was going to do now I didn't have to work any more. LOL! I've come back down to earth since then.

I am also on the Myeloma XI trial on the RCD treatment. Unlike many on here, I quite like the Dex. It makes me feel less tired and achey, my skin and hair feel better, I have more energy and a much more positive attitude – lots of laughing and slightly hyper. The one I struggle with is the Revlimid, which makes me shake and fizz, and makes everything taste nasty, although I think I am adapting to it more every day. It is still only 3 weeks into treatment, so very early days.

I couldn't take the chemo at first as my kidneys weren't in good enough condition, but last week they gave me a single dose for this cycle and I will be on it properly for the next cycle. I was lucky to have no sickness or nausea from it.

You and others mention a spreadsheet for taking the tablets. I have been lucky with that too… The nurses at Nottingham have already created a table with coloured squares for the different tablets, so it was made easy for me. I also found it helpful to buy one of those tablet boxes and once a week, I have a little ritual of putting my pills into the individual sections. I don't know why, but it makes me smile.

I am at Nottingham City Hospital and think I have a great team of doctors and specialist nurses, who are empathic and reassuring and listen and answer questions. The nurse even helped me complete the form for a blue disabled car badge for me. They have reassured me in terms of side effects and general well-being, that it is hard for the first 8 weeks (2 cycles of treatment), but it does get better. So I am just going with the flow, but with a positive attitude, like yourself.

I come on the forum every few days, but to be honest, I think I want to put most of my energy into the other things in my life than getting too engrossed in talking about my disease. I hope that doesn't offend anyone. We all need to deal with our disease in different ways. I am so glad I don't have dependent children or a complicated work situation. My short-term contract ended yesterday, and I am entitled to ESA, so I can be happily unemployed and lazy on bad days and hopefully do something useful in the world when I have more energy – volunteering, creative or anarchistic!

I have so far avoided thinking too much about the stem cell transplant, but am feeling less terrified about it now than a couple of weeks ago. I am trying to approach all of this as just more life experiences, even dealing with pain, fear, depression, boredom, aches and fatigue. I mean there are no guarantees in life, are there? I think most of us go around trying to create security, whether through family, job, money, housing, etc. But anything can and does happen in a life… I mean, there's nothing to say that despite having MM, I won't get run down by some crazed driver next week! 😀

Has anyone else been to an Info Day? I have booked to go to the Nottingham one on 9 April.

Also, if you're interested, I am writing a blog about my experience of living with myeloma. It's mostly for personally therapeutic reasons, but I hope it's helpful to others too: http://jetblackliving.wordpress.com/

[eveParticipant]

hi jonny

Its my partner who has mm,I have found this site very helpful it has certainly calmed my fears.my partner is in his 5th day on myeloma x1 trials he got ctd branch.I can only say he is better than he has been for many months; Jets story is so similar to my partners.

I can only advise you to get things in place in advance,eg blue badge,wheelchair, they take sometime to organise and if you wait until you need it,it will not be there.Seem drastic but it does make a difference to how much you can do.We try to get out everyday

good luck on your journey,and tell your wife to watch out for dexi moods;

regards eve

[BADGERParticipant]

Hello Jon

WELCOME to the site it is the very best place for support help and information especially to know you are not alone all the odd and disturbing symtoms you may get there will always be someone who has had it before and can talk it though with you I hope they sort out your pain soon good luck for the journey
Keep well
Jo 😎

[JonnyPParticipant]

Hi Jet,

Thanks for your comments, it's interesting to get an idea of how people approach the situation. I had a less positive day yesterday – who knows why, but I want to get back on the positive path if I can.

I noticed that in failed to spell Myeloma properly in my introduction, so maybe my mind is a bit screwed just now.

I'm in clinic today, hopefully to get some more feedback on the tests and then to start Chemo.

I'll keep an eye on your blog too.

Best wishes, Jon.

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