[alanjamesbyrneParticipant]

hi all I am Alan I’m on day 3 of my treatment I don’t feel  any different as yet a small tummy ache and pains so times in my side,it hurts my chest when I cough or sneeze but apart from this I am fine so far the coughing and sneezing bit I’ve had awhile just a bit tender, I am 59 years old and live in Southampton ,aim married to Jill for over41 years I’ve 3 children all boys and 8 grand children and 1 boxer dog Tia ,I don’t know what to expect, or weather this is going to work out ,but sometimes it’s easier doing and talking to people that are in the same boat,I am doing clinical drug trials for a minimum 4 X1 month cycles I live by the General hospital but I’m staying at home having my treatment ,doing all my own drugs and injections I am on chemo tablets and steroids ,and I love pottering around on my allotment ,well that’s about me for now,Alan

[martinebbageParticipant]

Hi Alan Good luck with your treatment, I live down the road in Portsmouth. I am luckily only smouldering, so not treatment yet although I have been told it will at sometime !!!! I have my next appointment on the 07th October. I am also married with two younger kids 16&14 plus two older 24&28. Hope everything goes well for you and the treatment works plus the side effects are minimal.

Good luck

Regards

Martin

[alanjamesbyrneParticipant]

Hi Martin how long ago were you diagnosed mine was two years ago nov next ,started with a funny shoulder ,then one day I was lifting a ladder on my crv and something went in my shoulder turns out the collar bone snapped a bit pain full, then after scans x Rays biopsies ,you name it they came up with this ,I’ve had to stop working which is the hardest part  drives me mad ,they say at present there’s no cure but they can hold it off for quite a while ,all we can do is live in hope mate that’s why I am doing the clinical trials maybe I can help somebody else even if if doesn’t help me ,but hoping it will mind ,not impressed with the support that they are giving me at the moment lots of silly things ,like they give me syringes ,and no instruction and no sharps box ,to name a few should be a check sheet that they go through with you ,silly but bloody easy   To easy ,the other silly one I’m supposed to monitor temp and ring up if it goes to 38 c but they don’t give you one how the hell can I monitor it I’ve ordered one now ,just hope temp does not come up until it arrives,any way enough from me for now ,take it easy and good luck,alan

[botopeParticipant]

Hello Alan I’m also a newbie on this forum and also started  chemo – CTD on 1 October – part of the myeloma 11 trial at Southampton too

I’m glad you’re feeling ok – I’m having a real problem with dizziness and sickness; hoping I’m not going to have that for  the next four months minimum…

I was diagnosed with myeloma following a routine blood test in Feb 2012, having had MGUS for some time I believe (only veiled hints to me at the time).  I now have lytic lesions in my ribs and pelvis, although the pain from the rib was alleviated by radiotherapy.

I stopped work at the end of Sept tho had done little since Nov last year – still feels strange not having that responsibility. I have two grandchildren two cats and one husband. He’s been very supportive indeed.

[alanjamesbyrneParticipant]

Hi botope ,I struggled last night ,now the steroids have stopped until 12 th neck ,back,chest ,shoulders very stiff ,had a job to get out of bed ,but I suppose you have to adjust yourself  as you go ,it was never going to be easy ,I’m sorry that your struggling ,I can’t say that I’m impressed with the support you receive from hospital it seems there isn’t any ,and it’s an awful lot to take in ,they just give you the drugs and let you get on with it ,I do know that I am going to fight this with evrey thing I’ve got ,but feel more support would help ,the family and friends have helped ,any way you keep plugging away like I will ,and I wish you the best of luck ,take care

[botopeParticipant]

Hello again, it does feel scary to be home alone with a pile of boxes of medication. I guess the idea is just see how you do and check it out next time. Three weeks seems like a long time, it might be an idea if someone called just to check out how you are, I suppose there just isn’t the manpower to do the stuff that would support us all. More’s the pity.

Sorry you’ve had a bad night. I didn’t feel the effects of stopping the steroid, myself, think my problem is the thalidomide – but as you say, got to grit my teeth and get on with it. There  is light at the end of the tunnel, just can’t see it yet

[christaylorParticipant]

Hi Botope,  I am Chris diagnosed this June, me too have multiple lytic lesions, some fractured ribs, bad lower back and both legs. Anyway  the big bag of CDT chemo drug were indeed daunting when I first got them home from the hospital, my first 2 cycles were not good in that I developed an infection that they never really got to the bottom of , in the end had to take a month off. However  I have started again and I am on the first week of the second cycle, I seem to be coping better this time, the normal stuff Constipation, Hiccups, horrible taste are always a bit of an issue.  I hope you manage with all your medication and will understand totally any of the symptoms and not nice bits you may have. I wish you good luck and take care.

Regards Chris.

[eveParticipant]

Hi Newbies

As a very oldie on here may I suggest instead of joining on some ones post,you start your own post,telling people who you are,what hospital you go to and what treatment you are having,plus of course any problems. This will help people to help you in person!!!!

When I first came on here,some one posted. WHO THE HELL ARE YOU!!!!,I replied and it was the best thing I ever did????
During that time MIN a regular on here,Said don,t be shy show a picture,only reason I did not,is I did not know how to do it. The rest is history!!!!!

I would like to think I leave this forum in a better place,full of cyber friends,alive and some dead,people who helped me and in turn helped people, ( I know I upset some ) sorry???,a spade is a spade in any language ( blunt as ever ) learn all you can,knowledge is the key as Bridget would say,plus Keith,Dai Min,out door Paul,I could go on,they left you with a fountain of knowledge to be explored,do not waste it,use the new experts you have on here.

[rebeccaRParticipant]

Hi Eve, Glad to see you posting – please remember you are part of that fountain of knowledge and your words and sayings helped me a lot in the early days – never underestimate how you can/have helped people. The people who post on here are very few unfortunately but I think there are so many people who read/gain from the forum without ever posting – so those who do post/share experiences help a much wider audience than you would expect – and let’s face it we all need help.

Rebecca

[botopeParticipant]

Hello Eve and thank you for your words of wisdom.  All i need to do now is get my act together with the picture…

[botopeParticipant]

Hi Chris thank you for your encouragement, I know I need some positive input just now, and you helped a lot

[mhnevillParticipant]

Hi Both of you newbies

Be encouraged. The treatment does work even if it feels tough at times. Just do watch out for infections. I got shingles and didn’t recognise it straight away so was not treated as soon as I might have bee. I have now been in remission for two years. I am full of lessions, but breaks which I put down to the regular infusions of Zometa.

Keep cheerful and do what you can while you can!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Eve,

Yes, good to see you posting still. Like you I often think of lost friends all who helped me in my early days. Don’t know if you watched the new awareness video. I find it very depressing. Glad it wasn’t the first thing I read on here.

Take care. You are special!

Love Mavis x

• This reply was modified 10 years, 1 month ago by  mhnevill.

[martinebbageParticipant]

Hi Mavis

As another “smouldering” newbie for the past 3 months, from your post are you saying Zometa is good or not so good? as I am shortly going to be starting a course for bone strengthening also what are the side affects?.

Again great to her the views of experienced people like you.

Kind Regards

Martin

[mhnevillParticipant]

Hi Martin

I am saying I think Zometa is very good. At first I used to be on tablets, but then research showed that infusions were more effective in preventing further bone damage AND appeared to have an anti-myeloma bonus. Originally they were only given for two years, but they now keep you on them because they are effective. As I said, I have been on them three years and although my Consultant was very worried over two years ago, before I started CDT, that I could have a broken bone at any time, I haven’t had one.

The only side affect I had was a feverish spell, a bit like flu, the first time I had it. It is a bit of a nuisance going to hospital every four weeks, but the infusion itself only takes twenty minutes and I am usually in and out within an hour and a half.

Hope that helps.

Best wishes.

Mavis

[Author]

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