Sorry you've had to join us Tom :{
If the Myeloma's not really having any harmful effect as yet, why are you having a SCT so soon? This is a very individual disease as I'm sure you know (or will come to know) but I was asymptomatic (no symptoms) for 4 yrs and wanted to put treatment off for as long as possible. I have spine damage but I'm on Zometa so hopefully this will slow down. I had my SCT last New Year (determined to make this New Year's Eve better. No way am I having a nasty blast of chemo in hospital again. No way to bring in the new year!) It's taken me until a month or 2 ago to feel like me again. Had a hell of a time but…am still here. It's not been easy. Worst year of my life in fact but I got through it and you will too. As I said, Myeloma effects people so differently. I'm sure your consultant knows the best plan for you.
Good luck. Get over this Christmas & New Year – Next year will be different for you x
Hi Mike,
I was also 19 in 1989 so we're about the same age. I've got 2 young kids who I also adore. Myeloma certainly knows how to pick its victims.
Do you think the impact of the accident triggered the Myeloma? They say a "shock" is often the trigger. With me it was probably giving birth!
6 months later I had excruciating knee pain and eventually was diagnosed after a routine blood test. I was asymptomatic (without symptoms) for 4 yrs which was good but always hanging over me and not something I could forget about. Last year my paraprotein rose to a level the doctors decided was high and anaemia was affecting me so it was time to start chemo in prep for my SCT. It broke my heart and nearly broke ME. The past 18 months has been hell but after my SCT in Jan this year I am so proud of myself. I had it rough. Nearly didn't make it and suffered AWFUL problems after it but….I'm still here. Another friend our age with Myeloma told me she really began to feel herself again after about 9 months. That gave me something to hold onto and you know what? She was right. I picked up and almost feel like me again. Last New Year's Eve was spent in hospital – on my own, having the high dose cyclophosphomide before the SCT! This year will be different! I'm also on the MXI by the way. I got the old-fashioned CTD followed by Velcade. I then got the Revlimid maintenence which brought my PP levels from >1 to Untraceable just recently. Remission as far as I'm concerned!
Wishing you luck Mike. Sounds like you have every faith in your doctor which is good.
Keep me posted and keep your chin up.
Sharon x
Hi Peggy, I went through it at the beginning of the year and yes, the GCSF injections are the norm I think. Good luck with the harvest and everything that follows.
Sharon x
Winston!
We met at the Birmingham Infoday. Sat at the same table for lunch (and very nice it was too!)
I was sorry to hear you'd relapsed after such a long time but you're an inspiration. I'm quite a negative thinker and need to hear about more people like yourself, who've done well from their first transplant.
I had my transplant in January of this year and came shockingly close to losing my life but I got through it. Last year was tough with the chemo. This year has been awful until a month or 2 ago when I began to feel like me again and the problems I was having (too many to list) seemed to sort themselves.
I'm not without pain but on the whole, a lot better. Just recently though I've had awful neck pain. I thought this was muscular and due to my pillows or something but it hasn't eased. I had xrays at my last review appointment and after reading your post, will be phoning for results tomorrow. It's quite worrying. My bloods are good. I found out 2 days before the Infoday that I was actually in remission now. That's great for my very negative head but I still worry. Walking about for any length of time makes me feel like I have a terrible headache as I'm trying my best to stand straight and look normal. I need to get this sorted.
The Infoday was geared very much towards new, recently diagnosed patients or approaching treatment I agree but it did make me feel like there is hope for relapsing patients. Keep on at your doctors, Winston. They'll get you sorted I'm sure.
Was lovely to meet you.
Hang in there,
Sharon x
Rachel, I'm so sorry for you and your family. I was at the Infoday on Saturday when I found out about Paul and I have to say I was shocked and deeply saddened. We were at more or less the same point with our treatment. I had my transplant in January and came very close to losing my life. Paul seemed to be doing so well. Damn this disease.
Wish I could do something or say something to make things better but I just want you to know I'm thinking about you and your family at this sad time.
Take care,
Sharon x
Bit miffed to read that some of you are finding it difficult to claim benefits. Please contact Macmillan for advice. They sorted things really swiftly for me and at 41 I qualify for full DLA and have a lovely new Motability car. I never thought for a minute I'd qualify but apparently I DO. Living with Myeloma isn't easy whatever age you are. If you're over ….I think it's 65 – you get attendance allowance instead of DLA but you ARE entitled to something.
CONTACT MACMILLAN PLEASE
Sharon x
Hi Sarah. I rarely check in on this site nowadays but saw your post this morning and felt I should reply. I had my SCT in January this year and have been struggling with illness ever since. I came home from hospital after my transplant and had to go back in less than a week later with a blood infection. The day I was coming home I developed an incredibly itchy rash in patches all over my face and body. I thought it may just be a drug rash. A reaction to the antibiotic I'd had. I came home and it got worse. The skin on my face thickened and went leathery. I went to my GP and had antihistamines prescribed. This did nothing. I went back and had steroids prescribed. They seemed to help at first but then the rash and the itching came back with a vengeance. I finished up going to the hospital at Sheffield where I have my treatment and asking my consultant to be seen by dermatology. I was told it wasn't an emergency so they wouldn't see me! IT IS TO ME! I was ready to do myself in. It drove me absolutely insane. I got to see dematology and was diagnosed with Sweet's Syndrome. I had a biopsy but the result from this was inconclusive so I'm still not certain what the rash is. Sweet's can be caused by a build up of neutrophils under the skin after having GCSF injections. This all makes sense in my case. It was treated with steroids. It keeps coming back but not as bad. The itching is the worst bit. I have Prednisolone left over from last time it flared up and just take that for a few days and it seems to calm it down.
I hope this helps.
Sharon.
Hi, just an updade after my meeting with my consultant today. It's a differnt member of the team I see for my reviews and although very nice, he's just not been listening to me and telling me I have no option but to put up with it really. Well my consultant was a little more sympathetic, checked the protocol for the trial and has altered my Dex and Thalidomide doses for my next cycle. I'm also having a weeks break from the Thalidomide for this last week of my 4th cycle.
I'm feeling a little apprehensive about it all as My paraprotein reduction at the end of cycle 3 was only 3 (22-19). It's slowing down now and will plateau soon and I worry the reduction in drugs may have little or no effect. Time will tell I suppose. I have to try it as I just cannot go on the way I have been doing. I need to get a little bit of my life back and my husband needs to see his wife and my kids their mum.
I learned today I have a possible 8 cycles and need to achieve a 90% PP reduction before SCT but if I don't, the computer decides (because I'm on the trial)whether I get Velcade or nothing – straight to SCT. All scary stuff. I don't really like the idea of not getting a low PP before SCT but I suppose others have gone through it.
Anyway, I'm feeling a little more possitive today (that could be the Dex!) but I have some sort of a plan now.
Min, Eve and Mavis, I do have help with the kids (kind of!) My husband gave up work and became my carer when all this started as I just couldn't cope. We're not any worse off finantially, in fact slightly better off really to be honest. Living on one average wage was hard and bills were being filed in the appropriate cabinet (the bin). We're getting there now. He's not the best carer in the world but then I'm not the best patient. I've always been independent and find it difficult not to be now. None of my family have visited me and my Dad and brother have only just recently contacted me. I don't have a lot of family just these two really and that really hurt. Paul's family have been great though. His Mum and Dad have been wonderful and a massive help with Callum 5 and Anya 2. I have a lot to thank them for.
Glad to hear your husband's tolerating the Thalidomide, Min. Much as I like the little lift I get from Dex, I feel the Thalidomide might be easier to cope with on it's own.
Anyway, I'll see how I get on over the next month.
Thank you for your replies and support.
Sharon
Thank you Min and Bridget for your replies. I really appreciate it. I gave Ellen a call today and explained how I felt. She suggested I bring forward my next appointment with the doctor and discuss other options regarding treatment. I do feel like I'm being weak but then again why be a martyr and suffer? I'm also terrified that if I do go down a different treatment route, it might be worse. Sometimes better the devil you know. At least I know this is doing it's job, despite making me spend 90% of my time in bed wishing I'd never started on it. I have to get them to do something though because I just don't think I can go on like this much longer. I never expected it to be easy but not this bad. I expected a bit of sickness, tiredness etc. As it is, I don't go out the house really (unless a Dex day) and I feel I have no quality of life at the moment.
So thank you. You've made me take the first step. I'm waiting for a call from the Clinical Trial nurse now so I can bring my next appointment forward. I will let you know how I get on.
Sharon.
Hi, I'm not that familiar with this site since it all changed and not sure if this is the right place to add my post but it is relevant to Thalidomide.
I'm on the Myeloma XI Trial and got "picked" for Thalidomide as part of my chemotherapy before my SCT. I'd been asymptomatic for 4 years but my PP levels had crept up to 59 and I was anaemic along with an MRI showing I had spine damage/thin bones and a few other problems so they decided it was treatment time. So now I'm on my 4th cycle of CDT and not doing too well on it at all. I've had several short stays in hospital since I started and typing this is taking every last bit of energy I have left. I had a very nasty skin rash so they withdrew the cotrimoxazole I was taking. I've had the red face since, but not the lumps. Thalidomide seems to be the thing causing me the problems it seems. I take 100mg at night. This was meant to go to 200mg for cycle 2 but I felt I couldn't tolerate it so I was kept on the same dose. At first I felt like I wasn't here. I woke up one morning and actually thought I'd died which was quite upsetting. My whole body vibrates but this has recently gone to my face mainly. I feel dizzy faint and lifeless – I basically don't have a life any more until my Dex days then it starts over again. I spend the majority of my time crying in bed. Not ideal with a 5yr old and a 2yr old. It's this feeling faint and lifeless thing that's getting to me just now. I'm just not able to funcion. I go for my review every 3 weeks and tell the doctor just how bad things have been for me but he doesn't seem too concerned. I rang the nurse today for my PP result and told her but as it's doing it's job, they just don't seem keen to alter anything.
Has anyone else experienced this on Thalidomide? Does anyone know what my options are with regards to changing treatment? I know that's a question for my doctor next time but I've no idea whatsoever what other treatments there are. Yes, it's doing the job but frankly I don't think I can take any more. You know you've reached breaking point when you start having suicidal thoughts.
If anyone can offer anything on the subject I'd be grateful.
Thanks, Sharon.
Well I'm so sorry to hear about everything you've all been through with the loss of your Dad and the substandard care you feel you've received. The reason I'm at Sheffield is because I wasn't happy with the level of care I was getting at Doncaster and I have to say, despite a bit of a trek, I've been very happy with Sheffield so far.
I do understand what you were saying about Bank Holidays etc. though as I was waiting nervously by the phone for over a week for a call about starting treatment and it never happened. In the end, I rang them. I put that down to bank holidays, staff being off and beds being unavailable.
I must admit, generally I'm the sort of polite person who goes along with things and doesn't like to cause a fuss and put the doctors and nurses out and I appreciate your advice on this one. I will make sure I'm a tad more assertive and keep myself in the loop.
Once again, my condolences to you and your family. I'm so sorry to hear about your Dad. x
Thank you everyone for your well wishes. Starting treatment this Thursday.
Just what I need to read after getting the call to go into Sheffield for a few days for a BMB, Zometa and the Myeloma XI Trial. Myeloma effects us all differently as do the drugs we need to take to fight it. I haven't the time to write much now but I've felt increasingly wobbly over the past month or 2 and the time has come for me to take that chance with treatment.
Wish me luck.
(I feel I need it now)
