Hi Brian I am also Portsmouth based under Dr Causer hope your SCT goes well I am smouldering at the moment, next app 06th July really concerned getting pins & needles in my hands and feet. Good Luck

Martin

Hi Mike

Good luck, encouraged you have so had 6years, hope you get many more. I have been 6 months since diagnosis, I know what you mean regarding the lead up to the next meeting, it really is getting me down, still there are always people worse off.

Again good luck

Martin

Hi Susie

I had my 01st infusion of Zometa in December prior to this my specialist sent me to the hospital dentist for a check up, as a result I had a tooth plus two wisdom teeth removed. It was explained to me that one side affect of Zometa is that it affects the gums, they will not heal if you are on Zometa. The only other side effect, is that I…[Read more]

Lynda, I am 55 was diagnosed in June this year daughters of 14&17. If you read posts on hear (which is the only place a recommend you visit) you will see it is a very individual disease with people around 19 years+ others are less fortunate there are so many factors. You will need to understand exactly what stage he is at, for instance when I was…[Read more]

Hi Helen/ Boogirl

I was diagnosed in June 2014 lucky smouldering like you guy’s you know doubt have had all the tests. If you are like me you will be thinking all sorts of things in the early days my only advice is stick to this site as it will give you everything you need. I guess the questions we all have is when will MM get me? well the facts…[Read more]

Hi Mike

Thanks for the information I think I was just having a bad day yesterday, my other positive head is back on today. I have but my paranoid negative one back in the cupboard, sorry if my note was a bit short, I did not mean it to be. It is guy’s & girl’s like you that make being on this site so worthwhile, to such a novice like…[Read more]

Hi Mike

Are you saying that there is a study that exists saying that a smoulder has an 80% chance of progressing to MM within 2 years? or I am hopefully mis – reading what you are saying? if that is the case then I need to re think a few things. Having a poxy day, mind running on overtime, sure tomorrow I will have my positive head back on !!!

Hi Mavis

Great help thank you, just off to the hospital to check my teeth, which I know are not good, so not looking forward to that as I am a big woosey when it comes to my teeth !!!!

Thank again

Martin

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

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…[Read more]

Hi Colin Sounds like me you are “smouldering” ie have Myeloma but luckily have no pain of symptoms. I take heart that you have been like this for 18 months, as I was diagnosed only 3 months ago. It seems from all the posts and research I have seen Myeloma is so random and affects everyone individually. For instance I have read that people who have…[Read more]

Hi Brian

I am in exactly the same position since being diagnosed at the end of June 2014. Having had all the tests MRI, Pet Scan, Full Body x ray, Bone Marrow test, blood tests , Urine tests it is now a waiting game, I too feel fine with no pain. However, every time I get a pain or ache I think the worst. I am on regular blood test and visits.…[Read more]

Hi Robert So sorry you have had to join the club. My situation is very similar, I am 55 and I was diagnosed at the start of July this year. I am also smouldering like you, with no pain and feel well for which I am very great full for. I am also trying to make sense of it and understand what I am facing, I luckily have had every test under the sun…[Read more]

Hi Holly, so sorry to hear someone else has had the similar news. I was newly diagnosed 6 weeks ago. My advice is to really understand what you are dealing with, as others have advised myeloma is a totally individual thing. During my first visit to the specialist I was told I would have chemo followed by stem cell replacement and would have to…[Read more]

Hi Nikki

Thanks for your good wishes. You will see my post to Robbojnn later in this thread that explains my prognosis I got today, if you read it you will see that I have every reason to be positive. I count myself as very fortunate, I hope your treatment is going as well as it can good luck and keep positive.

Hi Robbo

Good luck tomorrow,I was diagnosed last week I am 55 with a great wife and two daughters of 14 & 16, I know exactly what you mean and have been going through. Mine started with a  very sore ankle, I had a bone marrow and MRI last week this was after blood, urine and full body x rays. Went back today to see my specialist, whilst I have go…[Read more]

Hi I have  been diagnosed this week, with the treatment meeting on Monday. I guess  I don’t know wheat I don’t know. I was advised to go on this site and it is great to see comments from others with similar challenges. We are all different and I am sure there will be some tough times ahead but I can’t do anything about it, so I will fight it ev…[Read more]