Hi David

How interesting your doctors are saying there is no benefit in giving Zometa for more than 2 years. May I ask where you are being treated ? I shall be telling my consultant next week that I don’t want to continue with it. It seems the hospital I am at gives it indefinitely!

Thanks so much for your reply.

Best wishes

susie

Hi Kevin, How fantastic – news like this really uplifts me – makes me feel that we are sticking 2 fingers up to MM and when one door closes in our life we are kicking down another. I am sure such an all embracing challenge will help keep you well and in remission much longer. I will certainly be following your travels. Enjoy

Rebecca

I was on the Myeloma X1 trial on Revlimid. From about cycle 3, I had tongue problems. The right side of my tongue felt as though I was recovering from a dental anesthetic. It was that feeling you get when a local anesthetic is wearing off. My consultant thought it rather amusing ! I didn’t and I thought it could be a form of neuropathy. It went…[Read more]

Emsie, to be honest I talk about mindfulness etc as it was my great saviour in my treatment, but I am nearing 4 years of this and time makes all the difference. Perhaps it’s because I know of the sheer exhaustion and torture of looking forward and second guessing that I can now stop myself from going there. We are also at different perspectives…[Read more]

Hi Emsie, Sorry to hear this news and as you will discover every person is different and the disease and treatments respond differently so to be honest with SCt it’s anyones guess and they can only tell you the “average” statistic. What I would like to stress is that at such a young age he is fitter and stronger to cope with aggressive treatments…[Read more]

Stay strong – there are still lots of treatments to try and hopefully one combination will get a longer lasting remission. As you know, nothing is set in stone with MM and how we react is very individual so whilst the last treatment wasn’t what you wanted it to be that doesn’t mean that the next one will be worse – Ian is not the “average”…[Read more]

That’s good Suzanne, your dad has lots to think about but is thinking about the wrong things and once their focus changes to what they really want to spend their time doing you will see their mood lift as they focus their energies on new challenges and hopefully MM will then go more to the back of the mind – but this takes a very long…[Read more]

Hi Sue, Your father has taken quite a bashing and to come to terms with this disease (if we ever really do) is only achieved with time and cannot be rushed. I think there are 2 ways people go with MM – no communication and keeping everything inside for fear of upsetting others or, like with all serious illnesses, allowing it to consume/dictate…[Read more]

Hi Lisan, So very sorry to hear of your loss which is so cruel and unfair on you all. I have a teenage daughter and think it is such a difficult age that I will have in place counselling for her (regardless of wishes) as when you grieve together it is very hard to open up fully without fear of causing more hurt to those we love and who are hurting…[Read more]

Hi Peter, Yes a poor do from the Dr’s and all the consultants I saw at the hospital were almost accusing me of refusing blood tests when I described the list of symptoms I’d given to the Dr – lots of head shaking but in the great scheme of things I could not/would not devote energy to complaining. I do not have any records from diagnosis as I was…[Read more]

Hi – I went to the Drs with all the symptoms of kidney failure in the July – was told it was labyrinthitis and no blood tests done and was rushed in some time in October or perhaps November (bit of a blur now). I was given lots of blood, platelets and drips which quickly got to me about 8 – 10% function. I was going to be transferred for dialysis…[Read more]

Hi sorry Peter for the confusion – I was diagnosed (just before my 51st) in kidney failure at 5% function with light chains at only 1120 and just 10% plasma cells in the bone marrow (they were perplexed at the amount of damage from small numbers at my hospital)- I had velcade and dex for 8 months followed by SCt and since then my light chains have…[Read more]

Hi Peter, I have lambda light chain and to highlight the individuality of it at only 1120 I have been left with 30% kidneys so everyone is different and they treat when it causes damage to the body – my treatment I suspect will start at about the level you are at now (based on how my kidneys reacted last time) yours may be a bit more of a wait but…[Read more]

Hi Dean, Sorry you are hear but it is not all doom and gloom tho’ when you are young with children it is hard not to get beyond the doom. I was diagnosed with kidney failure at 50, similar to yourself I suspect I had it a long time but I used to work nights etc so can always explain the tiredness away and my kidneys were at 5% – I had been in…[Read more]

Thanks for your replies guys. I’m not going abroad in September just to Cornwall. Just wondered how others cope if they go away whilst on treatment. And if meds are stopped while away.

Best wishes

susie

Hello Shytalk

Please don’t feel you are any different for feeling sad and scared, I’m sure we all feel that way at the beginning of this M M journey. I remember at the start of my treatment I was told by my consultant “most people sail through this treatment with no problems” So when I started treatment and felt so poorly I felt something was…[Read more]

Thank you, We have all been there and experienced just about every mood/emotion going. I have had MM near 4yrs (8 months chemo then a Stem cell transplant). I have no bone damage so am not hindered from exercising but what will get you through this is managing to control your mindset – you are both 100% in charge of your emotions/reactions – only…[Read more]

Hi, Sorry to hear about your dilemma- what are his current levels and what chemo combo was he on? If velcade, which I had, you only have it for max 8 months anyway and the bulk of the reduction is in the first 1 -3 cycles. It suggests your husband is stable and perhaps reached a plateau with that treatment – a break suggests he is possibly now at…[Read more]