Hi Vanessa
I'm sorry Stewart is having such problems with everything – I remember having problems when I was on CDT and being in and out of hospital regularly with back problems and infections in my case. I know osteonecrosis of the jaw can be a side effect of Zometa and PE is a side effect of thalidomide. I was warned about them both at the start of my treatment I had to and still have to inject myself everyday with blood thinners. The doctors will want to sort both problems out before moving forward to Stewart's SCT Although this is new and frightening for you the docs will have dealt with this before.
I've been lucky overall with the side effects over the 16 or so months I've been taking all sorts of different drugs but not so lucky with the results lol. At the moment I'm making a bit of progress yippee. Hmmm hope I haven't jinxed myself :-/
Good luck with everything and I'm sure Stewart will soon be back on track.
All the best.
Andy xx
Hi Carryanne.
Welcome, belatedly, to the forum. I hope you have a long and successful stay. I'm one of the rarer cases with MM. I was diagnosed Oct 2011 and told I'd probably be having a SCT in the spring 2012 – well it didn't go to plan and now I'm on my 4th treatment and at last I'm making a little progress month by month. Auto SCT and Allo SCT have both been almost ruled out for me. Auto due to the battering my bone marrow has taken from the different drugs and the length of time I've been on the drugs 🙁 Allo due to only finding one match out of 7 million on the database and he wasn't a good enough match. The Prof didn't rate my chances of getting out of hospital after the SCT. Usually there's a 20% mortality rate with Allo though this is improving all the time. Anyway that's my tale to date like I said I'm a rarity 😉 and at the moment I'm well and Revlamid is doing its job.
I'm with Phil when it come to avoiding infections. Everyone around me, family and friends know to stay away if they so much as sniff and I try to avoid crowded places. But having said that you have to LIVE so I still go to pubs and clubs but I'm a bit careful where and whomever I sit with. Going on holiday is a problem if flying because the air is resurculated in the plane so everyone gets any bugs going but it's a risk I'm prepared to take. Came back from Greece last October and just avoided being hopitalised though I had to go to the hospital every day sometimes twice a day for antibiotic injections. It hasn't put me off and we're looking to go to Greece again in June MM permitting.
Try and live your life as much as you did before diagnosis jumping the hurdles that MM throws in your way things will inevitably be cancelled or postponed along the way but try and not let it get you down. It's an awful worrying disease but you can live with it and after your SCT you can return to good health with little or no drugs for a long time. See Tom he's got it cracked 😉 Have faith in the docs and the drugs ask questions be bloody minded I won't tell not to worry because that's nearly impossible but you do get used to living with MM and all it's problems.
To nick Tom saying "onwards and upwards" it's working for him.
Good luck on your journey and take care.
All the best.
Andy xx
Hi Dai
Hope you are recovered from your latest trip to hospital and your bloods are good. I think temperature spikes with no discernible causes are a norm for MM.
I was at the day unit today for blood tests, zometa and to pick up my next cycle of drugs.
Keith was admitted to hospital Monday with a chest infection and was still in today lets hope he gets out soon.
All the best
Andy
Hi Keith
I hope the transfusions on Friday went well and you didn't have to wait too long for the blood to turn up from Newcastle. Hopefully you'll have had a good weekend and your platelets start to climb and the CDT gets to work.
I guess I'll see you again Friday – with a bit of luck it will be only for blood tests for the both of us.
All the best Keith
Andy
Hi Vanessa
Welcome to the forum.
When I was first diagnosed my PP's where 49 and I was told a 50% reduction was the minimum needed before a SCT could be contemplated. Unfortunately it took me a year and lots of different treatments, CDT, PAD, DTPace and now RCD, before I achieved the minimum required resulting in my bone marrow being well and truly hammered so that SCT has all but ruled out for me due my bone marrow not being able to produce enough stem cells. I'd need a long drug free period first so my bone marrow could recover.
So a reading of 14 is doable for a SCT and I'm assuming the medics don't want to try another treatment as this would compromise Stewart's bone marrow and its ability to produce the necessary stem cells. Well that's my reading of the situation 🙂 of course I could be wrong :-/
All the best to you both
Good luck
Andy
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
Hi Keith it was good to catch up with you yesterday. It's always good to see you. Though obviously I'd prefer it to be somewhere other than the day case unit. I hope your transfusion went ok and your energy levels start to pick up a bit.
Patrick was having trouble keeping his HB's up and he like you was having regular transfusions. I hope his new treatment does the trick.
My blood tests came back ok 😉 though my potassium was borderline. Note to self – keep up with the bananas!
My latest PP'S are 18 – still falling slowly – down from 21. Averaging a fall of 2 per cycle. Not a big movement but its the right direction. Get those fingers superglued Tom lol.
All the best all
Andy
Hi Vicki & Colin..
Hope you both had a good Xmas and New Years.
Glad to see Colin is recovering nicely post SCT but don't let him do too much. Obviously I don't speak from experience but from what I've read 😉
We really hope this year will be great for you both and you get to enjoy yourselves. Holidays, parties let the good times roll 😀
Right is time for me to try and get some sleep!
Take care.
All the best Andy & Steph xx
Hi Helen.
Just seen the photo you posted 😀 looking good.
Hopefully you are feeling good too and had a good Christmas and new year.
I see you are having trouble with food re Revlamid I don't find it a problem. I have a problem with cyclophosphamide putting me off food and making me feel nauseous. I have 3 courses of cyclo. per cycle and my taste gradually improves after the 3rd until I start my next cycle. Of course this could all be relative and the Revlamid could be affecting my taste but not as nearly as bad as the cyclophosphamide.
As to holidays Steph and I have booked to go the the lakes in march and are talking about maybe going to Belgium in April and hopefully get to go to Greece May/June time. If everything goes our way 😉
Right I'm going to try and sleep now if Dex will allow me.
Take care.
Love Andy & Steph xx
Ps when the weather improves we'll have to arrange to meet up for a coffee and a good old chinwag 😉
Hi all
I can't add much to the zometa flu debate other than say to date I haven't experienced any problems after my infusion. I have it infused over 15 mins.
Take care
Andy
Hi Dai
Well you just escaped in time! Steph and I arrived in Nottingham earlier – Saturday afternoon – only a 10min walk from city hospital. Steph said "Dai's in city hospital message him to see if its ok to visit" but when I came on here I saw you went home Friday. Never mind – it's good your home.
Hmmm Dave and Top Gear that's what I was watching all the time when I was in hospital this time last year. I must of seen every episode at least 3 times.
Hope you both have good time over the festive period.
All the best
Andy and Steph
Hi Keith.
It was good to see you at the day case unit Friday. Sorry I couldn't stay longer for a catch up. We were having windows replaced! Your platelets are very low but at least your neutrophils are good – I thought I was doing well with my neutrophils at 1.9 My potassium is low again so I've got those awful tablets to take again. Well I would if I'd remembered to bring them with me to Nottingham oops. Lots of bananas for me over Christmas.
Have a good and healthy Christmas and new year.
All the best
Andy
Hi David.
Good news your going to be drug free over Christmas and for your birthday. I seem to get another new drug every time I see my consultant my latest addition is an antiviral.
Have a happy Christmas a healthy new year and a wonderful birthday David
All the best
Andy
Hi Dai.
That C.diff is really hanging around causing you problems. Really glad that your starting to feel better. Glad that you can start the bendamustine after Christmas and your birthday. Hopefully you'll be home in time to enjoy Christmas, I was discharged last Xmas eve, and your birthday.
Take care Dai.
All the best to you and Janet
Andy & Steph
Hi folks.
Thanks for all the replies.
It does help boost morale that you all take time out of your own personal battles to read and reply. I read the posts all the time but sometimes find it difficult to post my news or give my insights when there's so much good news going around and so many new members on here with me being a difficult case.
The ironic thing about my battle is that most of the time I'm ok – I get a bit of nausea from the cyclophosphamide and have an achy back oh and not forgetting tiredness 😉 but otherwise look (you need to check with Steph if that's true) and feel fine. Which is a great improvement from where I was a year ago. I was tucked up in my hospital bed with a very painful back drugged up to the eyeballs not interested in anything. I know my case of not responding to treatments is rare, or is it, I just don't think new members want to read it. Maybe I'm wrong over to you the newly diagnosed and new members.
Vicki & Colin – you've both been through a roller coaster these past few months hopefully it will be plain sailing from now on. The battles you've gone through to get to this stage are behind you and will fade with time. Here's to a short recovery for Colin and a long long remission.
Now then where's those travel books for Greece 😎
Take care everyone
Andy
