I think that is great news for you David. I have only just started my treatment, but it gives me great hope that there is light at the end of the tunnel.
Kay x

Hi David They took me off Allopurinol. Although the rash has gone down considerably it is still there if I get hot, but I suppose it takes a while to get out the system. I am also on the same anti biotic and take one a day Monday, Wednesday, Friday. It will be interesting if the rash does not go down I will mention it at the hospital. I am back…[Read more]

Hi Clara and Angie
Welcome to the site (although you can see people wish you didn't have to be here). Sorry it has taken me a while to appear but I started CDT 12 days ago so been getting used to the routine, which I must admit was easier than expected. As you say the attitude is "Lets get started" Lets get well. Keep close to the site everyone…[Read more]

Hi Em

Sorry to hear about your dad. My family are the same, we use humour. I find it masks the denial and fear that I felt when I was diagnosed, but if it is their (and my) coping mechanism then its not a bad thing. From my own experience I can only say I have complete trust in my consultant and hospital regarding MM they know exactly what they…[Read more]

Hi Tanya
Sorry to hear about your dad, but now he has had the diagnosis confirmed he can begin the treatment and the journey. I started CTD 12 days ago. I find having someone go with me to the initial appointments helpful just to have someone there to hear things that i may miss. But I think after my first three week appointment I will be going…[Read more]

Hi Jo. That's interesting about anti biotics mine are co trimoxazole forte but the rash is like german measles. Great to hear CDT was a success for you.keeps me positive Kay x

Hi Bridget thanks for reply. I did not have gout thank goodness. I was put on a tablet for one cycle to stop it. My consultant said that when myeloma breaks down it could cause gout!!!! But they took me off it because of the rash. Although it's not pleasant for you it's nice to know we seem to have the same symptoms a few days after the Dex.…[Read more]

Hi Bridget
I have started my CTD now. On the second week. I have had the sandpaper mouth but been lucky with, up till now, no other effects. However, today, I have a rash which the nurse has said is due to the gout tablet and has taken me off of it. But I was interested to hear about you saying how tender you feel. My back feels like it is going…[Read more]

Thank you. Look forward to the journey with you.

Kay xx

Hi everyone
Well my consultant called and I am to begin treatment on Tuesday!!!! Bone marrow was 13% now 30% but more worried about my anaemia. I have dropped from 10.3 to 9.4 in 5 weeks. She has told me I will be on lots and lots of tablets but she is lovely and I trust her completely. Will not know until Tuesday if I am on Revlimid or…[Read more]

Thank you to all of your replies. I only had a local anaesetic. My first one was done by my clinical nurse, who was off sick, but next time I may well ask for sedation. They are trying to get me on the trial with Revlimid, but I shall know exactly on Thursday. Will let you know and appreciate all of your support. It helps when you talk to other…[Read more]

Thank you.

xx

Hi John I would like to say welcome too.
I have just joined the site and everyone is extremely helpful and supportive. I too hope you keep those levels low for years.

Kay x

Hi Scott
I just wanted to say hello too. I started as a smoulderer in April 2009. My para proteins started at 30 then fluctuated between 25 and 29 until September this year, when they suddenly went up to 32 and my haemaglobin went from 12 to 10. They have decided to start treatment in the new year and hopefully I will be on the Myeloma XI trial.…[Read more]

Hi Sarah
Thank you so much for your very positive message. I am very much a 'one day at a time' person, but I do have to be reminded frequently. I also do not like to ask for help and I have the habit of 'cutting off my nose to spite my face' especially with my partner who I can push away. I have such lovely friends and I will make sure I take…[Read more]

Many thanks for your kind reply Bridget.

Hi Tom

They will be trying to get me on the Revlimid in Feb and then stem cell treatment 6 months later, so its the same as yours. It reassures me when you say never looked back. Still cant believe this is happening, but as you say onwards and upwards.:-) Great to be around people who know what it is like. Will keep in touch. Kay x