[bikerchrisParticipant]

Hi everyone! My name is Chris, I live in Taunton and was confirmed as suffering with Myeloma on 2nd December this year after an initial diagnosis on 8 November.
My doctor was careful not to use the 'C' word, and he explained that Myeloma is a condition that people live with. I did ask him if it would kill me.
A quick Google when I got home confirmed how serious it was when I was taken to the McMillan Cancer website.
I have had worsening back and rib pain all year that started with a bad cough last winter, I thought I had broken ribs from coughing. Problems got worse everytime I did gardening, or lifted anything, and after an hours body-boarding in the summer I felt like I had been in a car crash, and could hardly breathe. Still the doctors said I had inflamed muscle walls, and to take painkillers. Eventually a new doctor saw me, and I had an X-ray and blood test which found anemia, and the traces of the Myeloma.
I am now finding my way around the brilliant Beacon Centre at Musgrove in Taunton, and am on Pamidranate, and CTD. I have tried all the Morphine based painkillers, and have had a blast of radio-therapy. The worst experience was the bone marrow biopsy – I felt finally reduced to a helpless medical specimen, and a sobbing wreck by the time the ordeal was over – my partner ended up nearly passed out on the floor, and I was left on the examination couch on my own!
The first month has been an experiment of balancing the medication, pain relief, constipation, sickness, and agony.
More importantly I have had to explain everything to my family, children, friends, work colleagues, and come to terms with the fact that my life has changed forever. I waver between flippancy and grief, hope and sadness, acceptance of my fate, and fear of the unknown.
I would like to hear from anybody in the area, and have been following David's messages, who I believe is also in Taunton.
A very happy New Year to everyone, and I hope to meet some new friends soon.
Chris

[tomParticipant]

Hi Chris

A warm welcome to this great site am sure Like i you did not want to join? but here you/I and many more are here.

I was told in Jan 2009 that I was part of the MM mob, started on CDT then a Stem Cell Transplant in December 2009, doing good so far and still in remission and only having Zometa Infusions evry four weeks.

For me Chris flippancy is good but grief at this time is not for me, I know I am a Well lets get it sorted sort of Man and as you will se from my posts an "Onwards and Upwards" fella, that said it wasn't easy telling the Kids and Family.

Good Luck on your Journey to Remission and hope its a smooth one for you, Just Listen to your Body and when it tells you to rest (and it will) then rest it saves fighting it later on 🙂

Any thing you need to ask fire away (dont ask me owt techie as I dont know??)

Tom "Onwards and Upwards"

[HelenParticipant]

Hello Chris
Upbeat and flippant is good, sad, mad and angry bit is normal, I'm still moving between all of those things and have spent the last year on the roller coaster that is myeloma. I'm now 4 months post stem cell transplant and doing ok. Ask any question on here, you will get lots of support – even at those funny times of the day or night when you don't think there will be anyone even awake. Just keep taking the tablets……..
Helen

[brochoParticipant]

Hi Chris welcome Although it has been 5 years since I was diagnosed I can remember feeling very confused , angry , sad and at other times flippant and off- hand about it, I imagine a lot of people would also recognise your description too so you are not alone. Believe it or not things will get easier as you get your head around the treatment and all the medical terminology it becomes less confusing Your doctor sounds as if he has a very positive approach to your treatment which always helps ,yes there is no cure as yet but there have been so many new drugs in a short space of time it is becoming a manageable illness Some have achieved complete remission after a stem cell transplant too , there are a few on this site who will no doubt answer your post Bone marrow biopsies are awful , didnt they offer you sedation? I have had more than a dozen but only one without sedation , never again! I would definitely ask if I were you no point suffering .How are you getting on with your pain management now ? I had radiotherapy for awful back pain due to a new tumour few months ago and it worked brilliantly. I take very high doses of Oxycontin mainly because the bone damage is very extensive in my case and my spine was reconstructed with metal rods and plates after losing 3 vertebrae before being diagnosed. Hang in there your life has changed but you will get some normality back and hopefully a very long remission after your treatment Good luck and best wishes Bridget

[PerkymiteParticipant]

Hi Chris, I have been away at my Daughters for the Christmas period and have just found your posts. As I have said it was a pity we could not have met at the Beacon Centre this morning, however if you want to meet for a chat Mo and I will be more than happy.

Your feelings, emotions and perhaps anger at your situation are about par for the course I think.
As others have said there is, at the moment, no known cure but it is now treatable and since I have had the decease July 2009 I have spoken to people who are still surviving 15 years after diagnosis. The main contributor seems to be the person?s attitude and that has to be positive. It is a word you will start to hear a lot of from just about everybody.

I would not really spend too much time searching the web for the ?magic bullet? because if there was one it would be plastered all over this site. You will find people who will swear that they have been cured by all sorts of things from eating Cucumbers to taking Ginger etc etc? All the up-to-date information you will ever need is on this site, take a good look around it. Since I found it I have not bothered ?surfing?. Added to which if you have a problem you can always ring, for free, our resident buddy (MyelomaUK Myeloma Nurse) Helen who knows everything about Myeloma!

I look forward to perhaps meeting you.

Kindest regards ? Vasbyte

David

[mhnevillParticipant]

Hi Chris

Sorry you have had to join us! I feel for you as you come to terms with this life changing diagnosis. I find, now it is over a year since mine that I have come to an easier accomodation with MM. Fortunately, so far, apart from surgery on my back and radiotherepy, and now monthly zometa, for my bones, I haven't had to have any other treatment.

Hope you find some support from someone living nearby. I have always regretted there isn't a Support Group here in Bradford. In fact, I keep thinking of trying to start one up.

This site is really a God send and folk are so generous with sharing their experiences.

Very best wishes for a long and happy future in spite of MM.

Mavis

[tomParticipant]

Hi Chris
Just thought I would pop on and see how you are doing? Hope these are not going into your "Trash Can" Oh ? if they are you wont be able to read this one then will (am a silly billy)

Tom 🙂

[scott9Participant]

Hi Chris

I had a similar experience to start. I had really bad back pain from May 2010. I thought it was just muscular but it didn't go away. In Sept I had an MRI scan and they found a broken bone in my spine plus blood disorders. In Oct I got the diagnosis of myeloma. At that time I had never even heard of it! Not a happy time for the next few months, but you do get used to living with it. This Christmas was a million times better than previous year. Believe me, things do get better. You just have to listen to your body and not overdo things. I accept the fact that I won't be as fit as before. You do adapt.

Good luck for the future.

Scott

[bikerchrisParticipant]

Hi Tom, yes I have seen your replies, but I havn't been at the laptop to reply until now, but many thanks to you, and to everyone who has commented and replied to my post – it is great to see that a few members of the site have read my ramblings!
I agree, it seems to be a brilliant site, and your comments have already been of help to me as some of the medical mumbo jumbo can be pretty confusing.
Since last time I have had my first monthly meeting with the Consultant, to renew my drug supplies. The only alarming thing was that my neutrophils are only 0.7, so they have taken me off the chemo for now, and I am just on the thalidomide and steroids. He was worried that the chemo would lower the immune system even more, but the fall may be down to the radiotherapy. My PP level is down from 55 to 34.5. On the positive side, the radiotherapy seems to have reduced my back pain slightly, and without the chemo I am feeling much livlier and less queasy. It is very tempting to rush around doing too much, but my family are good at nagging me to take it easy – and that is the message from other sufferers too.
No-one has spoken to me about SCT yet, but I guess it is early days for me yet.
Happy New Year to everyone on the site, and I will raise my glass of shandy to 'positive thinking'! Cheers! Chris

[tomParticipant]

Hi Chris

Well am pleased you are getting the posts 🙂

After reading your nutro pp and stuff am none the wiser Lol shamed to say I have left all that stuff to My Dr's so far and it works for me 🙂

Keep on keeping strong and its grewat that the Family Nag you when you do too much.

Catcha Lata

Tom "Onwards and Upwards"

[bikerchrisParticipant]

HI Bridget,
Sorry it has taken me ages to reply, I hope you are feeling ok. I am pleased to say that my radiotherapy seems to have helped me and my back is much less painful now, I am still taking the Oxycontin at night and morning but none during the day. I saw the specialist today, and she was very pleased with my last set of blood results. I am starting on my third cycle of Chemo now, and if it carries on working I may be looking at Stem Cell treatment at Easter.
You mentioned about sedation during the Bone Marrow sample, no they did not offer it, and when we enquired they said there wasn't time, so I was rather bulldozed into it – I did have gas and air though. I would be pretty apprehensive before going into it again, but all part of the 'pain to get some gain' I guess.
Regards, Chris

[bikerchrisParticipant]

HI David,
Quite happy to meet up in Taunton some time. Give me a ring, 01823 270304.
Regards, Chris

[CAZ1Participant]

Hi bikerchris,
I have been quiet for a while, but welcome you to this very supportive and exclusive band of people who dance with MM. This is not a text book disease and affects different people in different ways. The enormity of your diagnosis also cannot be taken in in one sitting- and can be very frightening if information is collated from the Internet-some of the American websites are really worrying, so you have come to the right forum. I have a superb Haematology Nurse Specialist who tells it as it is, is very understanding of both my and my husband's concerns, and has been very supportive- presumably you will have someone like that at Taunton. I am in the West Country too,but attend Torbay Hospital in Torquay.
I am half way through my 4th cycle of CDT,finishing in a week and a half,and also have Pamidronate monthly,which plays havoc with my recovering broken leg for a couple of days! I have a date for my build up to harvest stem cells and a rough date ,if all goes well, of stem cell transplant in April.
The advice I can give you is to stay positive, plan ahead for things you want to do,be realistic on the days that you can't do anything–the 'dump day's we call them after the steroids have stopped,and plan small activities.I get frustrated as I can't drive on low days,and am only really getting back to driving after breaking my leg badly 7 months ago, but short walks help and my kids have got me a turbo trainer for my bike so at least I can build up my muscles slowly.It's a roller coaster but the only way is up, Good luck!

[ChrisM50Participant]

Chris
I was diagnosed in February 2010, after presenting with very similar symptons. At the age of 48 this was a shock and the last two years have not been without some problems, but things are good at the moment. I live in bristol and have had fantastic tretment – the first thing to say is that you should not have a painful time having biopsies, I have had 2, both pain free (fell asleep during the last one!). My treatment started with CDT but I soon ran into problems with neuropathy, so switched to Velcade. I subsequently had an autograft stem cell transplant (September 2011) followed by an allograft (unrelated donor) sct in January 2011. This method of treatment (the double sct) is fairly unusual (I think)but was felt to be the best option as I was fairly young and fit and my myeloma is fairly aggressive. I had about 6 months off work but am now back more or less full time and feeling fine. They are still not sure whetherit has 'worked' but residual paraprotien levels seem to be falling and I am not on any active treatment.
I have always tried to keep positive and treated the myeloma as a minor inconvinience rather than a life changer!

[brochoParticipant]

Hi Chris welcome to the best supporters club there is !! You have had a tough couple of years but good to hear things are going well I am sure your positive attitude has helped a lot . I am a positive person who puts mm on the back burner most of the time, an optician once asked if I had any illness and my automatic answer was no , very embarassing when I realised my mistake after 5 mins !! Take care of yourself and I hope those numbers keep dropping Bridget

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