[GrayhamParticipant]

Hi, I'm Grayham and I live in Perth, Western Australia. I have found, and joined this site as we do not have one in Australia and I would dearly love to find out more about aweful disease that I was diagnosed with in October 2012.

My treatment so far (as I have stage1 Myeloma)has not been too severe. I am on pain medication, steroids and a weekly dosage of Chemo at a day clinic. I actually feel a million dollars and am working on getting back to work soon. Todate I have had no side effects to any of the treatment and was considering myself very fortunate…….. however –
A recent consult with my Oncologist put me in the picture about stage 2 of my treatment which will entail StemCells and fullchemo and all the works.
It all starts to get very scary and one reads of the treatment giving us another few years and so on.
I am 64 years of age, very active, working, hobbyist photographer and although a life-long smoker (ex now) have never had a sick day in my life (honestly) My biggest shock out of all this was that I could actually get sick. What's a headache??(smiles).

Your terminology in the UK seems a little different to over hear, so bear with me if I need clarification from time to time. I've joined here for honest and open dialogue because I need to learn from you and if my input along the way helps others then I will be pleased……
Thanks for listening…… I have a lot of reading to do here…. but look forward to chatting with you….. please remember the time delays between our countries.
Best regards

Grayham
http://www.imagepro.photography.com/Lintrathen

My photography website if you are interested.

[VickiParticipant]

Hi graham,

Welcome to the forum! 🙂 my partner Colin was diagnosed aged 55 in October 2011, we went through the induction treatment, that's the chemo tablets, steroids and a tablet called revlimid for 21 days of the cycle. It was tough at times, he felt good sometimes and poorly others. He did manage to go to work and other times work for home. He had 7 cycles of this which brought his paraproteins down to nil and his light chains down to 750.

We too were very worried about the transplant, that's an understatement. It all sounded so scary. However the medical teams gave us confidence and knew what they were doing. Once Colin had the high dose chemo we knew there was no going back and just sat it out in hospital. There were days well Colin felt very very unwell, like sores in the mouth, sickness and tummy upsets, but he came through it. He had his transplant early November 2012 and he is touchwood on the road to recovery now!

Harvesting the cells were hard for us, we ended up having 3 goes, however we did it. It wasn't easy by any means, and there have been days since where Colin has felt so ill we wondered if it was all worth it :-), however when you get to the point where you can see someone looking better and doing a bit more, you realise it is 🙂

Go for it, if you feel it's right for you, ask lots of questions and get reassurance!

Vicki and Colin x

[GrayhamParticipant]

Hi Vikki and Colin……….. thanks for your reply (got my picture up now).
I think that treatment seems to differ from Dr. to Dr. as I am still on a weekly Chemo course of 30min transfusion of Velcade and Cyclophosphamide that has been going on now for 3 months and is sceduled for 2 – 3 more. I then have two options to consider…. either the paraprotein/ lightchain route for a while, resulting (eventually) in the stemcell/chemo bash OR go straight for the latter. Oncologist has given me some reading material on both processes…. saying its my choice. My partner Louise is currently working her way throught it all.
Thanks for your history… and its still scary…. and your strength and support….. its a lot for me to get my mind around…. especially when talk is made of "give him another 4 years or so, maybe". I still have a lot of living to do… smiles. Anyway I'll get the litrature from Louise and then I hopefully can pick your brains a little more… I'll also get Louise linked in here as well.
Thanks again and talk soon

Grayham

[meganjaneParticipant]

Hi Grayham,

Welcome to the forum, you will find lots of very helpful people here and although things may be slightly different in Australia you will find from reading the posts here that even within the UK treatment varies from hospital to hospital.

My husband Phil was diagnosed with MM in May 2012 at the age of 43. Phil participated in a clinical trial in London called PADIMAC. This trial was looking to see if the use of Velcade as a first line treatment could allow the stem cell transplant to be delayed. If the myeloma (in Phil's case measured by the paraprotein levels) had a 90% response to the initial treatment the stem cells would be harvested but the transplant would not take place until the paraprotein levels started to rise again. Phil had six cycles of Velcade, doxorubicin (a chemo drug) and dex (a steroid) which resulted in a 84% drop in his paraprotein levels. The six cycles took five months to complete.

Everyone is different but Phil had no problem with the stem cell harvest, they managed to collect just under 8 million cells on the first day, it took between four and five hours. With the stem cell transplant, although it was not easy, Phil had relatively few side effects. The main problem was a stomach bug that appeared when Phil's immune system was at its lowest point. Phil was in hospital for 24 days but he is now home and recovering well. Phil is still very tired but this is getting better day by day.

There are quite a few people on this forum who have chosen not to have the transplant for one reason or another but for Phil the transplant was the best option. It is scary but if you take it one day at a time it is doable.

Good luck with your treatment and please ask any questions you want.

Megan

[jmsmythParticipant]

Hi Grayham

Welcome from me to. You will get great support here. My husband was diagnosed with smouldering myeloma in 2006 and only started treatment in June. Hew was on 6 months of CDT. They had to reduce the Dex as he didn't tolerate it very well. He had stem cell harvest in beginning December and they got 7 .6 million first time. He is waiting for a bed but at moment has a terrible cole so they wouldn't do it anyway. He is having second thoughts about so I will Have to wait and see

Good luck with your journey
Love Jean

[MothasParticipant]

Grayham stick in there mate. I was diagnosed just before xmas with full MM after previously having plascmacytoma. I'm having induction therapy of Velcade, Doxyrubicin and Dex for two cycles followed by a Stem Cell transplant, sometime around April I guess if all goes well.

I wouldn't take much notice of the 'give him another 4 years' type statistics, much of the stuff about survival you see on the web and quoted at you refers to patients who may have been treated 10 or 15 years ago and since then there have been massive improvements in treatment. In the states they are debating whether MM will soon be reclassified from a fatal illness to a chronic one. More up to date statistics mention good average survival rates of 7-10 years and upwards. With lots of new treatments coming on stream in the near future that will push that average up even more, hopefully we're looking at a cure and I believe we have reason for cautious optimism.

I'm 47 and am determined to draw my bloody pension!

Thanks for the links to your photographs.

Tom

[tomParticipant]

Hi Graham

A warm welcome to the Site, sit down make yourself comfy and ask away.

Me ? am 57 had CDT then stem cell transplant in 2009 now drug free and doing great.

Keep well Graham

Tom Onwards and Upwards
Al av a look at your photos too 🙂

[andygParticipant]

Hi Grayham
Welcome to the forum. Although none of us wants to be members you'll find it's a very friendly and welcoming forum. No question is too daft or trivial – so just ask away.
My history is I was diagnosed in October 2011 after approx 18 months of back pain. Unfortunately my MM has proven to be a challenge to the medics and the drugs. My paraproteins started at 49 and though they fell to the mid 30's they wouldn't go any lower. My treatment started with CDT followed by PAD and then on to DTPace but my paraproteins stayed in the mid 30's I am now on RCD and my paraproteins have at last fallen and my last reading was 18. AutoSCT has all but ruled out for me due to the battering my bone marrow has taken from all the different drugs that have been thrown at it. AlloSCT has been ruled out also due to no suitable match being found.
As you will read everyone's journey with this bloody awful disease is different and as far as I'm aware my case is rare. Most make it through to SCT some very quickly some it takes a bit of a battle to get there.
I wish you all the best in your own personal journey and where ever it takes you. You'll have good times and bad times but where ever you're at you'll always support and advice on this forum.
Good luck.
All the best
Andy

[eveParticipant]

Hi Grayham

Yes it is very scary,I think we all felt like that even careers,specially when they tell you there is no cure.we have all been there got over the shock asked the same questions ,my husband was like you,never took a pill or had a headache,well he has made up for it in the last 2years,our home has seemed like a chemist at times.

It does sound if you are having the same treatment but intravenous ly,you can down load lots of information from this site which you should find helpful,but you can always ask Ellen the nurse and we will help any way we can.

There is life after treatment ,we have just come back from NZ,so it's not all doom and gloom,treatment is doable,just watch out for infections and listen to your body,if you feel I'll see someone straight away,as infections can go through you very quickly.
There are people who are still going after many years,so just try to have appositive attertude.Eve

[GillParticipant]

Dear Grayham

This is not a club that anybody wants to join but if you have mm it is the best place in the world to get support and friendship.

The treatment for mm and the drugs that are coming on line are getting better and better and I cannot wait to see mm getting kicked into touch once and for all. Too late for my husband who died aged 57 after 4 years of having mm but in time for others.

I hope your treatment goes really well. Keep in touch with all the lovely people on this site they will help you through your journey and cheer the roof off when you come out the other side. xxx

[GrayhamParticipant]

Hi [i][b]Megan, Jean,Tom, Andy, Tom (again)Eve and Gill[/b][/i]……….. you guys are amazing and I thank you for your upbeat approach to all of this…… your encouragement is awesome and I will get to writing to each and every one of you soon…….. gotta get some sleep first.

Grayham

[HelenRParticipant]

Hi Grayham,

Just to wish you good luck! I was diagnosed at the end of May/early June and am now in complete remission. I'm not having a stem cell transplant, as I'm on the PADIMAC trial which Megan mentioned, so it's 'watch and wait' and see how that pans out. Like Tom said, ignore any offputting statistics (I also heard some shocking ones which took me a while to get over!) and focus on the fact that some people live long lives with it. I've met one who has had 17 years so far and doing fine. Being fit and healthy to start with has got to be helpful.

That's not to say it doesn't take some time to get your head round it all – it does – and you probably can't take any short cuts on the emotional rollercoaster, you've just got to ride it… but it's do-able, from my experience. I know I've been very lucky with the treatment response and everyone's journey is very different. Then again, not so lucky to get it at 33 when I have plenty of better things to be doing!!

All the best (g'day?? can't believe nobody has yet attempted any terrible Australian jokes…)

Helen

PS no need to reply as you have plenty to do! and I'm not on here much anyway

[GrayhamParticipant]

[b]Hi Megan[/b]………. thank so much for your story….. I'm pleased that Phil is on the mend, slow as it is. The PADIMAC trial obviously went well over there because I appear to be one of the first Australians to have the drug over here, and am responding well to it. I have Chemo in the day clinic every Tuesday for 30 minutes, and 3 out of 4 treatments is with Valcade. My specialist has said that I've responded well and that there is no rush to move on to phase two of my treatment…. I am currently booked into the day clinic for 2 more months………..
I hope you keep us informed of Phil's progress…..

Thanks for sharing

Grayham

[MicheleParticipant]

Hi Grayham and welcome to the site.
We don't mind having an Aussie join us.:-D
I'm really glad you found Myeloma UK. It's a brilliant site and it definitely helps you to understand what's going on in the MM world.

I was diagnosed in May 2011, had 6 months of CTD and then a SCT in February 2012. I recovered very well and am now living life to the full, drug free. Fortunately the MM was caught very early on, so not too much damage.
It was 2 weeks after we got back from WA that I started having arthritic-type pains in my joints that made me go to the doctors. I'd been bitten a lot by mozzies in Mandurah and really thought I'd picked up Ross River Virus.
Anyway, thanks to bloodtests, MM was found to be the cause and so my new way of life began.

Whereabouts in Perth are you Grayham? We have friends in Sorrento and always stay with friends who own a vineyard in the Swan Valley when we come over. (Edgecombe's). We love borrowing your Summers when it's below zero here! Hope to get back out there at the end of the year.

Take Care for now and stay positive and optimistic. Are you being treated in Perth General?

Speak again soon.
Michele

[GrayhamParticipant]

Hi Michele………. thanks so much for your story and support. I too live in Perth, in Duncraig…. about three suburbs south of Sorrento and not far from the Swan Valley.

Wow!, you were lucky with them picking up your MM so early. They have suggested that mine could have been with me for years (even from my teens)as I've always had ankle/big toe issues which I put down to many hockey injuries… these areas were certainly highlighted throughout the various Xrays/scans I've had. It's pretty much a "go figure" kind of disease… no-one seems to have the same symptoms or treatment??

Yes, I've got phase 2 to read up on and decisions to make…. hopefully with the input from this lovely [b]UK team[/b].
With private health insurance I can choose my medical team so I'm being treated at the Hollywood Day Clinic in the city.

We'll talk soon

Grayham

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