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 had flu like symptoms for 48 hours after the infusion. Although a small price to pay in the greater scheme of things.
Good luck
Kind Regards
Martin
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 first told I was going to be on immediate treatment to cancel my holiday in 2 months etc. etc. after it was investigated more with tests, I am very lucky to be smouldering with no treatment and leading a normal life at the moment, it could be months or years before I need treatment, when it does kick off there is varying treatments that then can give remission. I know exactly how you are feeling, your head will be all over the place, confused and anxious. The good thing, he is young so there are lots of options plus new drugs being tested all the time. Try and stay positive and find out as much as you can and ask questions of your specialist.
Good Luck you are not alone.
Main thing from others, is to stay positive
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 are you have 10% chance per year for the 01st 5 years drops to 3% per year after that. I guess you are on the same watching brief only treatment I have is Zometa a bone strengthening infusion that I will be having once per month for 2 years, I am told it will have little or no side effects. I see my specialist now every 9 weeks with bloods being taken the week before, hopefully the levels stay stable.
You will see on here some people have had MM for 19 years and still going !!! others less time it is so individual, helps if it is caught early like we have fortunately been please other factors I guess that I don’t understand. I think having a positive attitude and not letting it get on top of you, I will admit to the odd dark day but snap out of it as soon as I can. I have been on holiday booked next years I am just determined not to let it get the better of me. There is always someone worse.
Good luck keep positive
Martin
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 me.
Thanks
Martin
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 works plus the side effects are minimal.
Good luck
Regards
Martin
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 only had 1 month smouldering and others 6years plus before it turns into full MM, then it is so individual as to how it affects each individual. I have come to terms with the fact that no treatment will happen apart from bone strengthening until you get pain or the regular blood test results show that it has become active, then depending on what symptons you have the treatment will differ massively, luckily over the years there seems to have been a lot of new drugs with research going on to develop new ones. It does seem when it “kicks off” some of the treatments are tough with differing forms of Chemotherapy then stem cell replacement which does not sound very nice however it will put you in remission for a period for anything from 1 – 3 years again this is so individual, then you can go through the cycle again. As they say there is no cure for Myeloma but some treatments that are improving all the time. It could be one hell of a lot worse, I have a friend who had a cancer that could not be treated. The advice I have had is push your specialist for as much information as possible and get to understand your test results and how they are changing. I am no expert, I have tried to give you my thoughts from what I have learnt, also I have found this site so informative, reading other peoples experiences plus I found the section on this site detailing the slides from Myeloma Regional meetings, to be of great help. I am 55 with a teenage children and a great wife so I owe it to them to get on with life and stay positive, in the knowledge that there is so much support and I am not alone.
May you keep “smouldering” for as long as possible, good luck and stay positive.
Regards
Martin
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. Due to see my specialist again on the 07th Oct. My view is that we are the lucky ones at the moment, it seems there are a number of treatments but as it is so individual, I guess no treatment and nothing will happen until something rears it’s ugly head. In the meantime staying very positive and getting on with life.
Good luck and as Rob says “stay smouldering for as long as you can”
Regards
Martin
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 MRI, PET Scan, Full body x-ray, Bone Marrow test, Numerous Blood and urine tests. My areas of concern are my Para protein levels are at 13.9 with my Kappa Light Chains 850 mg/l with a Kappa Lambda ratio of 72.03 what ever the hell that means. I have my next appointment in 6 weeks when I will get some clarification but when I asked before it is a case of wait and see as they do not know when it will strike could be tomorrow, 1 month, 6 months, 3 years, 5 years. It appears after speaking to my specialist and nurse and reading all the posts, it is so very different in every case. So I have been just keeping positive, just got back from two weeks in Disneyland Florida with my two girls 16 & 14 I am also lucky to have a fantastic and supportive wife, so have so much to be thank full for. However 01st day today in the 2 months since diagnosis that I have felt really down but I will get over it. I wish you all the luck in the world there is always someone worse off.
Regards
Martin
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 cancel my holiday. Since then, I have had an MRI, PET Scan, Bone Marrow, Full body X Ray, Loads of blood tests, Urine samples. I have had additional appointments and very lucky to have smouldering myeloma, whilst I am told it will go to full MM at sometime it could be I month, 6 months, 5 years who knows. Like you I have two kids, so life has to go on and will get on with it. The great news, I can go on holiday apart from bone strengthening drugs no treatment. So as I said earlier it is very individual I don’t write this for no other reason than to say really understand it, clearly it is not the end of the world. I have admiration for some of the posters on hear they have been a great strength to me with clear understandable knowledge. Good luck and stay positive.
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.
