Thanks for that David,
I am going to a Myeloma info day this Saturday, if the opportunity presents itself I will ask why everyone does not get the same follow up treatment after SCT.
Peter got nothing other than Aciclavor if my memory serves me right. It seems like a lifetime ago and it was only last May!
Can I have a straw poll and find out…[Read more]

Hi Gill,
Like Steven my husband looked awful when on velcade, I would describe him as grey in pallor, he was tired but the frequency of the dex kept him going. He is far more tired on Revlamid, has some bad days but generally looks well and healthy.
Peter was so ill and his blood counts so low on velcade that he was allowed to miss one…[Read more]

Hi Ruth what an awful shock for you no wonder you feel frightened and alone .If I were you I would avoid searching the internet for information as a lot of whats out there is out of date and can be frightening .I agree with Jet the specialist nurses are great and very easy to talk to If you dont feel thats right you can ring the info line on this…[Read more]

Haha lets just settle for irreverent anarchists!! Bridget

Hi Gill sorry to hear Stephen is having a rough time . When I was on velcade the fatigue was a major side-effect, I wasnt able to stay on it for long so I dont know if it gets better over time Fluid retention was also a problem for me , I think it is the combination of dex and velcade Does Stephen take Ferusimide ? It would be worth getting hold…[Read more]

Hi Nicki how lovely to hear that Sam is doing so well and your life is back on track Good luck with the move and I hope you have a wonderful time in Poland love to you both Bridget x

Hi Jon welcome to our merry little band , yes we are mostly merry ! Your head must still be spinning but its great you were able to get a fairly early diagnosis. In my experience, I was on the Myeloma X Trial , you get the very best of care whilst on a trial and hopefully you will sail through it without too many hiccups. Have you got your pain…[Read more]

Hi Chris
The rehydration salts were diarolite or boots own brand of them, Use twice as much water as recommended. Don't use them too frequently or often. But Peter was on 60 mg of frusamide twice daily
I was told by a friend that tins of 7up (lemonade) had all the salts you need for rehydration You can also make your own with 1 ltr…[Read more]

Hi Eve I really feel for you , it sounds as if you both have a lot on your plate at the moment The trouble with dex is that as a patient its very hard to admit it is the dex making you behave badly As hard as it will be try and ignore your husbands bad temper if you can , if you say to yourself its not him its the dexAbove all though make some…[Read more]

Hi
Pain is something that no one should have to suffer. My husband used to go to see his consultant and never remember to tell them about the pains. there was so much else going on and blood always overtook the conversation. then we would get home and I would have to listen to him complaining about the pain.
He was on 160 mg of slow release…[Read more]

Hi Ann wwelcome although I am sorry you are having to join us . I agree with Michelles advice and hopefully you wont wait too long Rrecently I was going to be referred to an orthapaedic surgeon to see if they could help with the pain in my back Apparently there are minute fractures in myeloma that can be the cause of pain but they are hard to…[Read more]

Yes keith he said words to the effect that they had been told not to do so many as often as they are expensive tests;
they used to go away to birmingham but then they got a machine and did them only on Mondays, Presumably the person trained to use it only works on Mondays. I think its difficult to complain given the price of the drugs but…[Read more]

David I love a good news story,
the important thing is as you say you feel in the best of health. No one can ask for more.
Curious about the anti biotics? what ones and have you been on them since your sct? Peter only gets them prescribed when he is suffering from an infection. Probably why his sct did not work. Why is the treatment so…[Read more]

Hi Min what a nuisance for Peter to get the trots on his drug free week , just doesnt seem fair. I hope his neutrophils get themselves in order soon It beggars belief that they wouldnt do the serum free light chain test because of cost !!!Grrrr!! It makes me so cross In my case they are the only chance I have of getting an indication of whats…[Read more]

Hi David great to hear your results , you must be on cloud nine !!Lucky you a whole 2 months before your next clinic , heaven. I hope your x-rays can put your mind at rest so that you can have some fun and normality after all you have been through in the last few months love Bridget x

Hi Sandie its good to hear your mum is feeling well and doesnt need treatment at the moment , long may it last Fingers crossed your scan wont show anything nasty .Work does have its good points keeping your mind busy though , hope you dont have to wait long love Bridget

Hi David I make a chart when I begin a new course of meds Just straightforward boxes but I leave room so I can tick off when I have taken them , the charts the pharmacy gave me didnt have space for this .I keep meaning to get a pill organiser but havent so far The other day I was told that these organisers are not safe to use with toxic chemo…[Read more]

Hi Keith it is blooming awful when your veins just cant be accessed and its even worse when you know the situation isnt going to improve. I agree with you wholeheartedly that licensing the sub-cutaneous injections needs to be a priority . It is infuriating that there isnt a short cut for situations like this Hope you arent feeling too battered love Bridget

Hi Chris,
they were simple re-hydration salts. I bought them as he was having such awful problems with leg cramps. He was on massive doses of frusomide at the time due to fluid retention.
Min

Thankyou David what a great picture Bridget x