pauloram

  • Thanks for your kind message Dawn, I will let you know how it goes. My paraprotein only got down to 11.5 after 9 cycles of CTD. I think this may be because I have a Chromosome 13 deletion which may respond better to Velcade which I still have for future use.

    Best wishes to everyone

    Andrea

  • ange changed their profile picture 9 years, 3 months ago

  • ange changed their profile picture 9 years, 3 months ago

  • Hi All

    My stem cell transplant is now booked at the University Hospital of Wales for Sunday 15 February, providing there is a bed available. Starting to get a little nervous now with only a few days to go! I would welcome any last minute advice on what to take etc.

    Best wishes
    Andrea xx

  • ange replied to the topic No remission! in the forum Newcomers 9 years, 4 months ago

    Hi Peter/Ian/all

    Just wondering how you are getting on with your new regime? I hope you are feeling better and that the paraproteins are coming down.

    I have been told that the original date for my transplant which was mid Feb is now not going to be until mid March because of the waiting list. My paraprotein which only got down to 11 after 9…[Read more]

  • ange replied to the topic No remission! in the forum Newcomers 9 years, 4 months ago

    Hi Peter

    Good luck with the VCD regime and hopefully your cold won’t delay treatment. I will have another paraprotein level taken soon along with another bone marrow biopsy and hopefully straight through to stem cell transplant in February. I have just had my hair shaved as I lost most of it after the Cyclophosphamide prime, feels a bit strange…[Read more]

  • ange replied to the topic No remission! in the forum Newcomers 9 years, 4 months ago

    Hi

    Welcome to the forum, you will find lots of support and information here! I am pretty much in the same situation as you. My paraprotein only got down to 11 after 9 cycles of CTD and it then went up to 16. I then had a Cyclo prime before my stem cell collection. I am going to have my transplant after our son’s wedding which is at the beginning…[Read more]

  • ange replied to the topic Cyclo Prime in the forum Treatment 9 years, 5 months ago

    Thanks for your reply Linda. I have had the chemo which went well although I was quite sick! Glad to be home now and taking it easy! I am managing the G-CSF injections myself so just waiting until the harvest on 18 Dec.

    Best wishes to everyone

    Andrea

  • ange started the topic Cyclo Prime in the forum Treatment 9 years, 5 months ago

    Hi All

    After completing 9 cycles of CTD my paraprotein finally plateaued at 11.9 and I am due to have a Cyclophosphamide Prime next week followed by 9 days of G-CSF injections and then stem cell harvest. I should then have the transplant in February (after my son’s wedding) all being well. I was wondering what experience others may have and any…[Read more]

  • Hi Den

    I am on my 6th cycle of CDT and take 100 mg Thalidomide, it was reduced to 50 mg on cycle 5 because of side effects but I wasn’t responding so now back up to 100 mg. I would go along with what the Consultant suggests, your husband will be carefully monitored. Dex makes me rather talkative too! Best of luck with the treatment, hope your…[Read more]

  • ange replied to the topic Off to hospital today! in the forum Off topic 9 years, 9 months ago

    Hi David

    Hope all went well for your operation and hope you recover soon in that 70% success group.

    Best wishes

    Andrea

  • Hi Mavis

    Thank you for your message, lovely to hear how well you are doing. I think my treatment is going to take a bit longer now. After completing cycle 5 my paraprotein has now gone up to 20.5, this was on a reduced thalidomide of 50 mg so I am now back on 100 mg for cycle 6. They would like my paraprotein to be in single figures before…[Read more]

  • Hi Maureen and David,

    Thank you for your kind words of encouragement. I have been referred to Cardiff discuss stem cell collection and SCT. Thankfully I am coping really well with CTD at the moment.

    Best wishes

    Andrea xx

  • Hi everyone,

    Just thought I would update on my progress. I managed 4 cycles of CDT but struggled through the last few weeks of it not sleeping at all, feeling very spaced out etc. I also had quite marked facial numbness and on top of that hot flushes and night sweats to contend with! My paraprotein had reduced from 42 to 15 so that was excellent.…[Read more]

  • ange replied to the topic How confusing is this journey? in the forum Newcomers 10 years ago

    Hi Karen – I was diagnosed with smouldering myeloma from a routine GP blood test in August 2012. It was a complete shock and the watch and wait was difficult, not being able to plan anything etc. I started treatment this April and am now on my 3rd cycle of CTD. I am glad to start treatment and feel very lucky that I was diagnosed early before…[Read more]

  • Hi Vicki and Colin, thank you. I joined this forum when first diagnosed with smouldering myeloma and have had the benefit of reading all your posts and others at the various stages people are at. It is very reassuring to have this forum and the support of Myeloma UK. Best wishes Andrea xx

  • Hi Carol

    Thank you for the advice, I will take time off when I need it. I work in a hospital and feel very safe there, I think work will help keep my mind occupied for the time being! I wish you well on your recovery, you seem to have done very well. Best wishes Andrea xx

  • Hi David and Tom

    Thanks for the kind words of encouragement. My first day has gone well and everyone in work has been very supportive as are my family and friends. I only work Weds Thurs and Fri so will be able to pace myself. Andrea xx

  • After smouldering for 18 months and having a thorough review I am now starting CTD treatment tomorrow, 3 week cycle, also having Zometa 4 weekly. I am feeling very positive and strong but at the same time a little apprehensive. I hope to continue working for as long as possible and will be busy with my family etc. I feel relieved that the waiting…[Read more]

  • ange replied to the topic waiting in the forum Newcomers 10 years, 3 months ago

    Hi Wendy

    Hi Wendy

    I was diagnosed with smouldering myeloma in August 2012 so know exactly how you are feeling. After reading about it, talking to the nurses on this site, joining our local support group and attending information days I gradually accepted the diagnosis and just got on with life. This took some time and it was hard talking to…[Read more]

  • Load More