[teds31Participant]

Hi, I have ment to post here for a long time but never got round to it. I found out I had Myeloma about 5 years ago and so far have not had any treatment, so I feel a bit of a fraud after reading some of the posts. I see the consultant at the clinic every 4 months and I have asked why I have no symtoms ,they just say enjoy things as they are we will know when the time comes.I have had some bad runs of health over the last year, bowel problems and a chest infection that lasted most of the winter,I do have Broncholexersis (/S) and no one told me until the last appointment that this could be due to myeloma and lack of antibodies.Has any one had a simular length of time without treatment,it does become a strain when the appointment time gets near though we are all getting used to it gradually.

[HelenParticipant]

Hello Ted
I feel a bit impertinent as a relative newcomer to this site too, to be the first to reply to you, but anyway welcome. I have not experienced mm in the same way as yourself but know a chap who has, he too finds 'observation only' a bit of a trial but I think that if they say you don't need treatment, take this as a fantastic reprieve for as long as possible. The uncertainty is awful but the treatment is terribly stressful too.
Good luck
Helen

[jmsmythParticipant]

Hi Ted

My husband Frank was diagnosed sept 2006 and is not on any treatment. When first diagnosed he had Zometa every month for about 6 months. He sees consultant every two months. He has had a few set backs. At moment has severe pain in side. He had something similar before but turned out it was muscular. This time he reckons it's his ribs. Was supposed to see consultant on Thursday but she postponed it to 1 Sept. He also had to have a tooth out on Wednesday and is having problem with bleeding. He's quite happy to plod along as he is. I live in dread of each appointment – I want to keep treatment at bay for as long as possible. I wish you well for many many years to come.
Take care
Love Jean x

[CarolBradley1Participant]

Hi and welcome!
So pleased you are having a good long run. I managed for just over five years and to be honest if it had not been for my job becoming incredibly pressurised and our elderly mum becoming very difficult and demanding I suspect I would have continued well for quite some time. I should have put my foot down and looked after myself a little better but we all have 20 20 vision with hindsight.

I have spent the last year having treatment and am doing really well (I am even managing to horseride again on good days) but would encourage you to make the most of this time and just keep yourself as healthy and physically fit as possible ready for the time when you may need treatment.
I know how nervous we always were just before a visit to the specialist – it was like waiting for the hammer to fall. It´s very difficult but best thing is to live day by day as much as you possibly can – you could be as well as this for years to come!
Best of luck
Love Carol xxxx

[gina45Participant]

hello Ted and welcome to the site. My mum is the myeloma sufferer in our family.All i can say is that you will get lots of advice and support of the lovely people on this site i feel that i can come on here and when i need to ask anything there is always someone there with an answer or a kind word. I am sorry that you have myeloma but here is to many more symptom free years
Gina xx

[brochoParticipant]

Hi Ted welcome to the crazy gang!!Seriously you couldnt find a better place for support, advice or just a place to vent your worst fears There are lots of lovely people who are at various stages of the myeloma journey Its brilliant to hear you havent needed any treatment yet whilst we all get anxious on clinic days just try and enjoy these treatment free days without looking too far ahead Heres to many many more treatment free years Best wishes Bridget

[BADGERParticipant]

Hello Ted

Wecome to the site you have done so well not to have had treatment for five years long may it last I think chest infections are part of the baggage that comes with MM lets hope you have a better autumn:-)

Love JO

[teds31Participant]

Hi and thanks every one,its nice that so many people have found time to reply, I just put the bare facts into the first note ,I am in fact 80 tomorrow, and I often hear the old saying hes had a good innings and I suppose I have but I just want to know whats ahead and this seems to be a place I might find advice. We (my wife and I) dont spend a lot of time worrying about Myeloma but when I was told about the immune system problem I wondered why I was never told or why I never asked, the other doctors didn't seem to cotton on to the connection and this makes me wonder if each department stands alone, do I have to tell my own doctor and every other that I have Myeloma every time I visit them.I thought they all had my complete records from way back perhaps I'm wrong.Anyway thanks again everyone and I'll keep popping in to see whats happening and if I need help.
Ted.

[brochoParticipant]

Good morning Ted I hope you have a wonderful birthday celebrating !! I think it doesnt matter how old we are we all want to have the best we can out of life! The trouble with myeloma is very few doctors who havent treated myeloma patients will have come across it and they read up on the bare facts without realising all the different elements to it!! Now you have been diagnosed the different doctors should all be aware of it Do you have a myeloma specialist nurse? They are great for asking questions you forget to ask the consultant and for lots of things like benefit information, parking fee refunds etc best wishes Bridget x

[teds31Participant]

Hi Bridget, Thanks for the reply, I think I was just a little surprised that after being diagnosed over 5 years ago that non of the other doctors had realised that myeloma could be the cause of my infections which they were treating. I think all the doctors I have seen in that time have been open and frendly, I may have to be more aware in future and bring the myeloma into the conversation a bit earlier. Been for a chest CT scan today and go for the results in a couple of weeks, I am trying to get some idea what to do this coming winter if I have the same problems as last year. Nice to talk to you. Ted

[eveParticipant]

Hi Ted
Never forget you are 80 years YOUNG,happy birthday,A life is a Life and you make sure you enjoy every minute of it.:-)

As Bridget say Gp come across Myeloma may be once in there life time,I changed my gp to another one in the practice who had a little bit more knowledge and was willing to learn more about it!!.
Please,do not feel,a fraud I can only imagine every symptom you have,must make you think its starting!!!,peace of mind is what you need.:-)
Slim has flu injection every year and had a one off pneumonia jab,but there are lots of different types of pneumonia so will not offer you protection from them all.
Also we carry a file with us now ,with all results of any test he has had from.bloods urine results of mri and cats scans,you just have to ask for them,from your consultant,bloods when you have them taken,or specialist nurse.your body your results!!!
It might help to get info leaflet from this site and take it into your gp,if my own gp had been more aware of mm my husband would have been diagnosed far early than he was,

so keep posting Ted and all these lovely people on this site will try to help you as much as they can. best wishers Eve

[gina45Participant]

Hi again Ted, happy belated birthday, hope you had a lovely day. I also hope you have many more birthdays free of treatment. Hope you are ok.Please keep in touch to let us know how you are doing
Take care
Gina xx

[mhnevillParticipant]

Hi Ted

Can i also say happy many returns of yesterday!

I am not hqving any active treatment at the moment – only taking bone strentheners, because I have problems in my spine.

I am 66, but if i had got to 80 without any treatment I should certainly think twice about starting any unlees it was absolutely neccesary and the old MM was progressing fast. In your case i doubt that that will happen. I do hope not. Do you take multi vitimins and vitimin D to help prevent infections?

Very best wishes.

Mavis

[juliewelmanParticipant]

Hi Ted,
I was diagnosed 4 years ago and so far have not needed treatment. I have been feeling increasingly tired over the last few months but my levels are remaining stable and I have been told I can now wait 6 months until next checkup.Like yourself I have read of others all undergoing treatment and I feel a bit out on a limb. Every timeI go the clinic I seem to see someone different and I have received conflicting information of outlook.I am grateful that I do not need treatment yet but find living with it hanging over me quite difficult.It is hard for others to understand how you are feeling when there are no outward signs.I was only diagnosed as I was found to have a spinal cord tumour which was completely unrelated to myeloma.The surgery has left me with some permanent damage so my life has changed significantly. On the plus side I have finished work and spend a lot of time in Spain in the sun and my husband spoils me.
Julie

[ElizellenParticipant]

Welcome to the gang that you never asked to join, Ted! I am glad that you have not needed treatment so far and hope this will continue as long as is possible.

And a belated "Happy Birthday" from me too!

Eliz
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