[angeParticipant]

Thanks Vicki and Colin. I have a double room and bathroom to myself, wifi sorted and central line put in. All good so far!

Best wishes
Andrea

[angeParticipant]

Thanks Michele and Suzi, I feel alot better with these tips! All I have to do is ring tomorrow morning to check there is a bed available!

Best wishes

Andrea

[angeParticipant]

Thanks Rebecca, I have bought a nice fleece blanket and also a fluffy warm bed jacket. My daughter is going to make a countdown calender I like that idea! I have lots of books so hope I will be up to reading. That’s really good you are enjoying your remission,long may that continue!

Best wishes

Andrea

[angeParticipant]

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

[angeParticipant]

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 cycles of CDT has now risen to 15 and so I have been asked to go to clinic on Tuesday to discuss more treatment. I don’t know what other people have had in this situation but the information from Ian on Velcade is interesting. I will have to wait to see what’s in store for me! I will have another BMB within a month before transplant, in answer to Ian’s question I think it is standard.

Best wishes
Andrea

[angeParticipant]

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 but I am glad I did it!.

Best wishes

Andrea

[angeParticipant]

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 of February so I am not sure if I will need any more treatment in the meantime. I would be interested to hear what treatment you are given.

Best wishes

Andrea

[angeParticipant]

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

[angeParticipant]

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 husband continues to make good progress.

Best Wishes

Andrea

[angeParticipant]

Hi David

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

Best wishes

Andrea

[angeParticipant]

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 considering stem cell collection but it may be that I will plateau at a higher level, not sure what would happen in that case.

Best wishes to all

Andrea

[angeParticipant]

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

[angeParticipant]

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 major problems developed. It is very confusing and every patient is different. Try not to worry and just go along to your appointments and ask questions. I find the Myeloma Uk Patient Diary very helpful and I just ask them to fill out the blood test results for me in that section. My family have also attended the Information Days with me which are very good. It is a different life since diagnosis which I am still trying to come to terms with! Best of luck, take care, Andrea xx

[angeParticipant]

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

[angeParticipant]

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

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