This topic contains 95 replies, has 17 voices, and was last updated by 
teds31 12 years, 12 months ago.
Hi again all,
Nice to hear from you though as a new guy with nothing to show I dont want to hog the place. Thanks for the answers which all help me to understand this strange illness, to Eve I didnt know this illness was so exclusive that docs didnt know a lot about it and no I dont know anything about a specialist nurse, though I think OI remember when I was first diagnosed that some one said I could see them if I needed.Mavis I can see your point about weather to have treatment unless ofcourse there is no alterative.I think I am like you Julie I feel out on a limb nothing happening yet all sorts of questions and no answers, asking some one when am I going to die ,which is the same as saying how long have I got, feels defeatist and some docs think you are giving up which isnt true I just want to know what can the future hold. It isnt easy to talk to the family as I dont want to upset them. So here I am talking to you total strangers (though very nice ones:-) ) I think Ididnt appeciate how llittle I knew about it ,but Im learning. Thanks to all of you ,by the way am I the only man,or dont the others pour thier hearts out.;-) Ted.
Hi Ted,
Welcome to the forum, I have only recently joined myself but was in the same position as yourself. I was diagnosed 17 years ago and was having regular checkups at the hospital and like you always felt such a fraud when there were so many sick people in the clinic. Like you I had lots of infections and pains in my ribs and back but while my paraprotein levels went up and down they always stayed below the level requiring treatment. This year however, things changed and I just started to feel so tired and the pain was worse so I went to the GP who did some blood tests and within two days I was back at the hospital being told that it was time to have treatment. I am just finishing my second cycle of treatment and some days I feel better than I have in years and am begining to wonder if I should have had the treatment sooner.
It may be that you may never need to have treatment as smouldering myeloma doesn't necessarily go on to full myeloma.
Good luck and hopefully you can avoid the treatment.
Gill
Hi Ted,
No you are not the only man on here,if you look at the average person to have this diseases its,men of black race age 70 years,???? I know but thats what facts and figures say.:-P
I think,we see more younger people on this site,because the average age on people who use computers are younger.
We have 2 Davids and a smiley Tom,plus are welsh cousins,Scott and lots more,Plenty in the 50 group,the join that,as no strong language allowed hear,although every one feels like using it some times,Some only look in and comment when something comes up that is of interest to them,but women chatter more LOL.
No matter how good family is,unless you are living with mm or a carer of an mm patient,it,s hard to understand thats why this site is very helpful
the library is excellent,and you can keep up with new publications about mm
and you make cyber friends.best wishers from a friend Eve
Hi Julie
Glad to hear you are stable.
I am curious to know if you feel spending a lot of time in a sunny climate helps with some of the effects of MM? We lived in Spain until three years ago when we had to return to England as we had an elderly mother who was beginning to need care. However, we are now in a position whereby we could spend some time back in Spain but we are trying to weigh up the pros and cons. I am still quite delicate having had my transplant in February and am still receiving chemo – obviously we will be talking to our medical team but it would be interesting to know if you feel any better when you are in Spain.
It´s rather strange because I only got so bad that I needed treatment when we had been living back here a while – I always put it down to the stress we were under at that time – suppose the pace of life here didn´t help much either (or lack of sun!).
Anyway, best wishes for continued good health
Best Wishes Carol xx
Hi Eve, Part of my charity work is teaching older people how to use computers and its very satisfying but non so far with Myeloma, perhaps a good thing:-D Ted
Dear Carol,
Good to hear from you. I have had a long think about your question about whether I feel better in the sun in Spain.
It is hard to judge as our lifestyle in Spain is so different from home.Our Spanish house is all on one level and quite compact so I spend a lot of time stretched on the sunbed resting and reading whilst the husband waits on me so obviously I don't get so tired. I do take one of our labradors with me so have regular short walks which keeps the bones moving.My husband has even more medical problems than me and had a kidney transplant 4 years ago and he definately feels so much better in Spain.I really feel that he wouldn't be here now without his long holidays in the sun. I think you would be better to wait until yiou have recovered well from your transplant before venturing to Spain although we know from past history that the facilities in Spain are fantastic.
i would love to know how you felt as you got nearer to the time of needing treatment. I know I am definately not feeling as good as I was a year ago but thuis could be for other reasons. I was 54 when diagnosed so classed as young to have this problem. That makes me feel good .
Hope this helps.
Julie
Dear Julie
Thank you so much for your promt an informative reply.
I do understand how difficult it is to compare the two lifestyles as our house in Spain is also mainly on one level but rather big. Basically I can do what I want when I want there and my husband is proposing that we take our horses on holiday with us as we have facilities for them there. I am seeing the specialist on Monday so will ask advice. To be honest, it might help my recovery to be away for a while if only to get a rest from business and family pressures.
Regarding how I felt as I was approaching the time it was decided I needed to start treatment – thats rather difficult as I think I had actually begun to be accustomed to always feeling awfully fatigued as anemia had always featured high on my list of symtoms – headaches, short of breath lack of energy and sleeping lots. Also, I had suffered from pain in back and ribs for quite some time so had just found ways of doing jobs etc. that didn´t agrivate that. I was very tired but I´m not sure that I felt any worse than in the previous three years when the paraprotien levels started to rise – I really just started treatment because my Doctors felt that I should and as they are the professionals what else can we do? They have looked after me really well and I also like the team who care for me which helps a lot.´
I know the facilities are excellent in Spain but I found that I struggled wo translate everything for my husband (who struggles with Spanish) when I was ill or attended clinic. It really did just put an extra burden on me at a time when energy levels were really very low. I certainly would never move back to Spain permanantly as I have felt so much more at home here and would have struggled to adequately express myself during my transplant when at times such as infections etc. I was quite unwell.
Anyway, don´t know if any of this helps but I am certainly looking forward to a couple of weeks sunshine after all the rain we have had of late and being guaranteed good weather to play with my horses when I am well enough.
Best Wishes
love Carol xxx
Pity you don't live near me Ted as it would be great to have help with my computer skills.
Julie
I live near Leeds, but the charity is only for local people, and Im sure you are much too good to be in my class.>:-) we are very basic , nothing fancy you know.Ted.
Hi julie
I've been interested to hear of your journey as i also started mine with a tumour! What are your para protein levels at teh moment. I have been wondering if they wait until you get to a certain level if nothing else too dreadful occurs. I am going to ask my Consultant in September.
I trust you and your husband have many more years to spend time in Spain!
Very best wishes.
Mavis
Hi Mavis,
I was diagnosed in Nov 2007 with the spinal cord tumour and tests showed I had myeloma. I had the tumour surgically removed with a good degree of success but have been left with weakness in my legs due to nerve damage.My paraprotein levels at that time were 22. Within a year they had risen to 28 but now seem to be stable and last reading was 27.I was told that treatment usually becomes needed when levels reach about 30, but that this is not set in stone and if all other levels are o.k. it can be started even later.At the moment all my other levels are normal so they do not expect any deterioration in the next 6 months so not to go back until Feb.I have started to feel reallt tired but don't know if this is the myeloma. The consultant was not worried by it. What are your levels at the moment? What kind if tumour did you have?
Julie
Only joking Ted but I don't live that far from you. I am in North Lincolnshire. I am often in Leeds as our son is at university there. My husband had his kidney transplant in Jimmys and that is where I will go for stem cell harvest when the time comes.
Julie
Hi Julie
Thank you for your informative reply to my questions. That's why I value this site so much. I'm sure that Ted will have found what you had to say interesting to about levels of PP before treatment.
I was diagnosed following a tumour on my spine which was successfully removed in Leeds LGI and I have some racking in my spine where they took some of my T12 vertebrae away. I had 10 shots of radiotherepy afterwards. My PP at that time were about 8 and are now 12. My other readings are just about alright. Because I had already had four hip operations for arthritis, my mobility isn't marvellous. I am about to buy a mobility scooter. I'm 66yrs and have just had to retire (for the third time!) from being a House for Duty Priest in Charge in Steeton on the North Yorkshire border.
Was it in Leeds that they said about the levels before treatment, or is that just where you will go for stem cell extraction!
I live in Bradford and am currently under Airedale Hospital. but had to go to St Jame's for the radiotherepy.
All best wishes to you.
… And Ted, I have just had to buy a new laptop – Windows 7 and all that! Wish they ran courses like your here!!
Mavis
I do hope you are able to delay any further treatment for as long as possible. That is certainly me aim!
Hi Carol,
I would like to send you good wishes for your appointment tomorrow and hope everything is going well.It was interesting to hear that were tired, breathless and had headaches in the years before you started treatment, as I have all those symptoms but I am told that I am not amaemic. I was in the months after diagnosis but I had lost a lot of blood during surgery and after a 6 months course have never been anaemic again.
I was wondering how you plan to get your horses down to Spain for a holiday as I find travelling with a lively labrador hard work.Where abouts are you in Spain? We are near Altea in the Costa Blanca.
We are just heading off tomorrow for a short break in the I.O.W.
Thinking of you.
love Julie
Hi Mavis,
I was told about PP levels during my appointments at Castle Hill Hull.This is where I attend clinic and will have treatment although the stem cell harvesting is to be done at Jimmy.s in Leeds.I find it rather confusing as I see different consultants at each appointment and I am told different things. It has taken me this 4 years to glean as much information as I now know.I have been told such conflicting information from originally that I would do well to survive 5 years to 4 months ago being told that I may never need treatment so I always believe the good ones and forget the rest. The truth is that no one can predict how a patient will do as this is such an individual disease.I don't feel the same way about it as I originally did when I really thought I was counting off the months I had.I now make the most of all the time between appointments and squeeze in as much as I can.If I carry on like this I will die of exhaustion not myeloma.
Julie
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