[WelshHelenParticipant]

Hello everyone here, this is my 1st time posting, but I have read the website many times. My fiance, John, has MM. Back in 1997 he was dianosed with prostate cancer, and had 32 treatments of radiotherapy at the Velindre hosp in Cardiff. This did the trick and he was told that as far as they could tell it wasn't present in the bone. Yrs passed, and he had reg checkups, his PSA was good, so he was discharged back to our GP. Around 2 yrs or so ago, our GP did some blood tests, and John was diagnosed with myeloma. We had never heard of it. I have heard it said that possibly the radiotherapy for the prostate cancer could have caused the myeloma. It seems so unfair. He has never smoked, and doesn't drink alcohol – hes a total workaholic, but this attitude is keeping him going. He's had 5 courses of drugs on the Myeloma XI trial, taking the Dex/cyclophosphamide/lenalidomide cycles. He has to have a SCT in the UHW, Cardiff, poss Feb 5th. Has any of u lovely ladies and gents heard of this prostate link before? I'd appreciate any comments, I feel so sorry for him, cos he's already been thru so much, and now he's got this. Thank u for listening to me!

[brochoParticipant]

Hi Helen and welcome I am glad you felt able to post on here to get some support , there are so many lovely people on here who may be able to help. Sorry I am not aware of links between myeloma and prostrate cancer though. Your fiance has certainly been through the mill and I am sure the future must seem very bleak at the moment but hopefully he will have a very long remission after his sct best wishes to John and you Bridget

[jennyanneParticipant]

Hello Helen. I haven`t heard of any link between Prostate Cancer and Myeloma. We have a Myeloma Support Group based in Cardiff . Our next meeting is on Thursday 12 January. If you and your fiance would like to come along and meet other people in the same situation or talk to someone who has gone through S.C.T.we would be very pleased to see you.

[WelshHelenParticipant]

Hi Bridget, thanks for replying, and it was nice to hear from you! Yes, John has been through the mill, you are right. I can appreciate that there may not be a link between the prostate cancer/radiotherapy treatment and myeloma, but it just seems so strange & uncanny, for it to happen to him. Neither disease is in his family either, as far as we know. John is 14 yrs older than me, so I never met his dad, but he didn't have either disease. John's work keeps him going, tho, which is really good, he's been working today – we've got a garage – so it's hard, physical work, engines, etc. In fact, I think he's more worried about being away from the business, and leaving it in my hands, than having his treatment!! lol.. how are u now Bridget, I hope u r now keeping well, and do u possibly know if there are any ladies/gents here who r from my area? I'm sort of trying to find someone who's been into the UHW in Cardiff for treatment to see how they got on (we live around 20 miles or more from the hosp) thks once again for replying, Bridget, & hopefully I will hear from some other people, too xxx

[WelshHelenParticipant]

Hello Jenny, just received yr reply to my message, and thanks for the invitation to the support group, where in Cardiff is it held? As u can see from my reply to Bridget, we are quite a way from Cardiff itself, but John has to go to UHW hosp, as it's the only place with the machine for SCT treatment. Do u know if any of yr members have been to the same hospital, and if so, how did they get on? Love to hear from you again xx

[jennyanneParticipant]

Dear Helen . Quite a few people in our group attend UHW and have had transplants there, including my husband in OCT 06.
If you would like to contact me about the group, my details are on MUK site under Support Groups. You can also contact the Info Line as they have a Peer Network service and can put you in touch with someone who has been through it.

[ozzyParticipant]

Hadn't heard about this link before but had read somewhere that people who worked with chemicals such as farmers MM was quite common. I worked in a plating factory and worked with many acids and other chemicals such as cadmium so I often wonder if this is how I ended up with this dreaded disease.

[WelshHelenParticipant]

Thank you Jenny, for yr information, which was gratefully received here. Nice to know that we are not on our own here in Wales, thanks to lovely people like you..I'll have a look at the details of yr support group, as u have very kindly suggested – you will have to excuse my lack of knowledge regarding this website, as I am a newbie here, u see. 😀

[WelshHelenParticipant]

Hello Ozzy, thanks for replying back. Yes, I think u may be right regarding the chemicals factor and myeloma – not sure, of course – but John has had to use sheep dip yrs ago with the animals; and he also had to work with powerful chemicals in his job in the haulage industry as a mechanic. Of course, yrs ago, there was never any thought about the dangers for the workers was there, Ozzy? Things are so different now, and thank goodness for that. Maybe, these chemicals that John worked with combined with the radiotherapy, could be some reason why he's ended up with this disease .. I don't know, it just seems all so sad to me.:-( How r u now, Ozzy, and what does yr consultant say about the poss link with yr work? xx

[tomParticipant]

Hi Helen and John

I have never heard of the link between them both, just popped in to wish you both well.

Tom "Onwards and Upwards" xxxx

[WelshHelenParticipant]

Hi Tom, Thanks very much for yr reply – I haven't been online till now, so I've only just found it. I am very grateful indeed for yr best wishes – u are all so very kind..we've had a bit of a setback with John, he was given a provisional date for his SCT of Feb 5th, but was told that if someone dropped out due to an infection, it could be earlier – he has to go into Cardiff for that, but his haematology hospital consultant is based in RGH, Newport. He had an appointment in Newport on Friday, they said they wanted to see him before he went in, and as he'd had the lung function test, and heart valve test there, we thought it was just for the results, so he drove down there on his own. At his appointment, he was told that the UHW hosp, in Cardiff wanted to bring his appt for the SCT forward to this Tuesday, so he had an xray, ECG, and another bone marrow biopsy (you know what they are like}, his normal counsultant couldn't do the bone marrow test, she had a full surgery, so another doctor did it – or tried to do it – she made a complete mess of it basically, and left him in a bad state, in the end a nurse got another doctor to do it, and to cut a long story a bit shorter, he came home with a zimmer frame, and pain killers! he went to bed on Friday eve before 9pm & he is still there now, which is not like John at all he is always up in the mornings by 7.30 am, ready to start work, but the only thing he can do at the mo is go from the bedroom to the bathroom with a walking stick! She really botched that test up. She had put two dressings on him down the hosp, I changed it yesterday & it was soaked with blood, so it looks like he won't be going into Cardiff on Tues….As u know, you get lots of these bone marrow biopsy tests, and John is the "lets just get on with it type" he hasn't had any problems afterwards normally, but this time was totally different..I just don't know any more xx

[piatkazParticipant]

Hi Helen and John
I havent heard the connection between MM and prostate cancer the only thing I've heard is using maintenance drugs for long periods may possibly cause secondary cancers.Them Bone Marrow Biopsies arent pleasant I had 5 without sedation but the last one I used sedation it was so better so it will be sedation from now on.
The only connection I can see with my MM is chemicals also I've worked in Dairy's for 20 plus years and your in close contact with all sorts of chemicals.Good luck with your up and coming SCT I've had 2 and just had a mini allo,so any info you need about auto SCT theres lots of people who have had them.
All the best
Ian

[WelshHelenParticipant]

Hi Ian, thks for yr message, John didn't have any maintenance drugs for his prostate cancer, once he had gone thru all the radiotherapy at the Velindre hosp, that was it, the hosp just had him going back for checkups for yrs, & he was doing ok – in fact he was doing v well, until this MM popped up. There is a sort of connection between both you & him as regards the chemicals – John has come in contact with some pretty deadly ones, both through his job yrs ago in heavy haulage, and he used to live on a farm, as well! (altho we didn't know how dangerous these things were at the time) He is still in bed at the mo – the doctor really messed him up this time – grr – hes v tired & I'm taking his meals & his tablets upstairs for him (he's diabetic as well) I can remember at one of his 1st bone marrow biopsies the Haematologist told him he had strong bones; so maybe the doctor on Friday wasn't up to it, she just kept trying & trying using more drills & getting nowhere, & saying to him "you'd better come back on Monday" eventually a nurse got a male doctor in & he did the test. As far as I know they don't offer sedation at RGH, Newport, they just inject into the area to numb it first, and she had given him the maxium dose as it was – the male doctor wanted to give him more! (he didn't in the end) ..it's just not good enough in my eyes.. for his to be stuck in bed is not like John at all, he's always on the go..how r u now after yr SCT's I hope u r now good, Ian xxx

[mhnevillParticipant]

Hi Helen

Just caught up with your posts. So sorry John has had such a bad time these past few days – just when you would have liked plain sailing to his SCT. I do hope he bounces back soon.

I expect that trying to work out the connection between MM and other cancers, and how we got MM, is something a lot of us on here do. I had uterine cancer five years before being diagnosed, but following an MRI they said I was completely clear of that, so no link there.

I had a bone graft after a two stage hip replacement and I often wonder if I got some dodgey bone!!!

But whatever, I guess we all just push on doing the bast we can to make the most of our re-adjusted lives. It does help that so many people on here are so positve in spite of having so much to cope with.

I do hope you manage to meet up with other MMers in Wales, I am sure it will help.

All best wishes to you both.

Mavis

[WelshHelenParticipant]

Hi Mavis, thanks v much for yr reply and good wishes for John, it is something that I am very grateful for, to be able to confide all that is going on here to lovely ladies and gentlemen who understand. 🙂 You have been through the mill too, Mavis, with the medical problems that u have had..I think it's good if u have family around to help you cope a bit! we are lacking a bit here..John has only got me to help him, and I've just got my older brother, who's as good as gold to me, he's going out tomorrow to get John an eletric razor, the hosp says he has to have one to go in {he normally uses a really old fashioned thing with the deadliest blades u could imagine – I had a bash at shaving my legs in the bath with it once – never again, I cut myself to ribbons!!:-D they were nice & smooth tho, if u ignored all the blood, the bathroom was like a scene from "the chainsaw massacre" :-S xxx

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