Hi Jet,

It would seem that you (and I) have Bence-Jones, light chain myeloma. My pp's have never been a factor but my light chains were 3.500 when I started CTD. I was down to negligible after 2 cycles and 0 after 4. I had to wait for 4 months for my SCT due to shy stem cells but I stayed at 0 from November 09 t0 January 11 (SCT in March…[Read more]

Hi Mike
Really sorry that you have to be on the site, but it really is the best source of information and such lovely people that you never feel alone. I started Myeloma XI trial and I am just starting 4th cycle. It took me 2 cycles to get into the swing of things and to learn my pattern, but once I was in the pattern it was very easy to manage.…[Read more]

I hope to see you on Saturday Jet, I have a chill at the moment but I'm hoping it will clear up before the week-end. Dr Byrne is my usual consultant but we have met them all during my treatments and while we have only met Sarah on a couple of occasions we know Jenny quite well (and I know that she feels nervous about speaking). 🙂

I'd like…[Read more]

Hi everyone
All the conversations about the PP levels have been very interesting for me today. I started with smouldering myeloma 2 years ago at 29 they steadily increased and before Christmas I was told I would need treatment. My PP level was 36, my bmb results increased from 13% to 43%, but it was my anaemia that the consultant was more…[Read more]

hi mike

sorry to have to welcome you to the site but you will find your online friends here are so caring and helpful
I had type two diabetes before i was diagnosed so unfortunatly when taking the DEX I had to go on to insulin as it raised my sugars so much. Myeloma uk is a brilliant organisation they are so helpful and the line to the nurse…[Read more]

hello Dia

My husband and I went to the london info day last october it was a brilliant day and was over almost before it began as it was so informative and a very positive day I really felt uplifted Myeloma uk do a brilliant job even the catering was first class the break out groups were good with one just for carers which my husband found…[Read more]

Jet

having hyercalcaemia is bad and with the akf,Once you were put on drip with in 24 hours you would have seen a good improvement,drinking lots of water to flush kidneys out helps skin.Water seems the key to having good effect on skin and hair flushing excess drugs out of kidneys is important.The bone infusion helps with the pain relief.there…[Read more]

Hi Mike and welcome , sounds like you were lucky being picked during tests for diabetes , so many of us have to wait a long time Good luck on the trial , you will be very well looked after just dont hesitate to let them know your side-effects if you get any, doses can always be altered to suit you Heres to your fiftieth , its the new 40 you know…[Read more]

Hi Mike

sorry you are joining this club,but you will find it an experience in it self. lots to look at and lots of info here takes sometime to take it in.
My partner is coming up to 3cycle of chemo 21days of ctd myeloma x1 trial.

This site has helped me a lot,some great people on here,have a good journey

Hi Jet sorry but I also have the bad experiences on Dex. I was on 20 tablets of 2mg for four days twice in my cycle of CTD. I ripped through my bank account on the first lot. I bought everything in sight I was so high. But it was the come down that was worse, blurred vision, ratty, exhausted. My weight has ballooned and the taste in my mouth is…[Read more]

Hi Eve I believe you are right in thinking the dose is determined by our doctors , based on individual circumstances. When I was diagnosed I had a massive tumour from my spine into my ribs therefore I was on 80mg dex twice a day for 3 weeks to reduce the tumour, thankfully I have not neede such large doses since However in both my relapses I…[Read more]

Hi Jet and Bridget

I do not think gender is the key,My partner on ctd takes 20 tablets 2mg dose 4 days running then repeats dose after 7 days.his chemo cycle is 21 days!!!!

has a good quality of life when on dex although a bit short tempered,takes a few days off dex and is very very tired,hot and cold,not wanting to eat.

The strange thing…[Read more]

Hi Jet the taste thing happened to me when I first had it Ihad been in hospital for 6 weeks and after my back surgery was on massive doses of dex, 80 mg twice daily, needless to say this made me very greedy!! Some friends were begged to bring me something savourywhich they did bless em!! Well I ate a whole bag of baby bells before they had sat…[Read more]

Hi Jet I am glad you find dex so exhillirating , unfortunately I am the polar opposite Apart from the insomnia I retain fluid and although I was on the same dose as you Ido have a hamster face The last few months being on Rev and Dex have been awful for the first 5 days of the cycle My whole body was painful and tender for days so now I am going…[Read more]

Hi Gill poor Stephen what a bummer!( oops soory bad pun!!). What about anti-sickness injections , might make it a little more bearable love Bridget x

Hi Bluebird,

I don't know what I can say to take away your sorrow, having lost a brother who was aged 34 I can sympathise some what but to have lost 2 brothers in less than a year must be heartbreaking. My Dad has Myeloma and has had symptoms for approx 2 years before being diagnosed I can understand your anger and your grief. You will find…[Read more]

Hi Mark,

Great to hear you are going to be raising money for Myeloma UK this will give you something positive to focus on.

My Dad was diagnosed in January and it was a major shock as he has always been fit and well. You will find great support on this site and great info on treatment, side effects etc. There is so much info to take in and 2…[Read more]

Hi Tracey,

Thanks for your post back, my Dad is 62. Today we received the first of his results which read as follows 18/1/11 results from our visit to the Royal Free, CTD was delayed due to a chest infection.

18/1/11 Kappa 13.1 Lambda 502.0 Ratio 0.03
27/1/11 Kappa 11.6 Lambda 485.0 Ratio 0.02
22/3/11 Kappa 15.1 Lambda 137.0 Ratio…[Read more]

Hi Gaye you are right I think but its a lot easier to live with it if you arent in pain, I do hope they come up with something soon for you . No you arent alone we have the volume up too , all adds to the atmosphere love Bridget x