So sorry to hear the sad news, thinking of you Andrea xxxxxx

Dawn, I hope you managed to complete your stem cell harvest. I deferred my transplant till after my sons wedding after my harvest which I am very grateful for. At my last appointments my pp was 11.7 and 10.2. It was 12.8 before transplant so doesn’t seemed to have budged much! I seem to be around the same level as you Peter. My white cell…[Read more]

Peter, well done! So glad that the SCT has gone smoothly for you. Just take care of yourself now and hopefully you won’t get any complications. Remember to listen to your body and rest when you need to.

Sorry I haven’t been on here for a while. I have been to hospital twice recently. The first time I was…[Read more]

I am now 4 months post SCT doing well and feeling alot stronger. Only problem I have is ongoing carpel tunnel syndrome which is annoying, also quite achey in general but I am trying to improve my fitness level which helps. My paraprotein last time was 11.7 and before that was 10.7 so it seems to be stable. I have put…[Read more]

Good luck,I hope all goes well for you. It’s not easy going through SCT but I found the fantastic staff and support from family and friends made it easier. It’s 11 weeks since my transplant and thankfully I am doing well.

Best wishes

Andrea xx

Glad you are coping well and that you are getting a good response Dawn. Keep at it and look after yourself and take it easy. Hopefully we will get some nice summer weather which helps!

I don’t think everyone has a cytogenetic test but I had asked because I was interested! As for decimal places I have always been…[Read more]

Thanks for your kind message, I was very happy at yesterday’s clinic appointment to be told that that my paraprotein had dropped from 12.1 to 10.6 so my consultant was pleased with that. She said it may not drop much below 10 but it is more important that it stays down. I looked at the Mayo Clinics sMART classification and that was…[Read more]

I am now 6 weeks post SCT and starting to feel alot better. If I go back to bed after breakfast and doing the essential household chores I read my book and then get up about 12 pm, go for a walk and then I am fine for the rest of the day. My youngest daughter is revising for her GCSE’s so it is lovely to have time home with…[Read more]

Sorry to hear that Ian’s SCT is delayed. Hopefully the hospital dentist can sort out the dental work quickly. It must be worrying for you but as I keep telling myself – one day at a time!

Hope all goes well

Andrea xx

Sorry you have had to start treatment but glad to hear you have got through the first cycle! I had CDT and it did take a while longer before the full effects kicked in with me and I had to give up work and driving etc. You will know you feel and adjust to give yourself the best chance of the treatment working. Good luck and hopefully you…[Read more]

I am happy to say that my first clinic visit went well and bloods were fine. Thanks Peter and Matt for your kind messages. Thanks for the advice Graeme, since coming home I have hardly been able to do anything as it’s so much effort! It was quite a challenge to get ready and go to clinic and I certainly won’t be going out for a while…[Read more]

Thank you for all your kind messages and support. I am actually home now, earlier than expected! I did take all the advice given here and it certainly helped. I think I have been extremely lucky so far. I had the expected side effects from the Melphalan, mainly sickness and a slight sore throat but apart from that I am fine! The care I…[Read more]

Best wishes
Andrea

Best wishes

Andrea

Best wishes

Andrea

Best wishes to everyone

Andrea

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

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]

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]

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]

Best wishes to everyone

Andrea

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]

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]

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

Best wishes

Andrea

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]

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

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]

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

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

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]

That is very informative and clear. I always read the new articles as they are posted. I am particularly interested in personalized treatment for myeloma patients based on genetic abnormalities, especially as I work in medical genetics. I think there seems to be huge advances now and not having started treatment yet it makes me feel more…[Read more]

I was wondering how you were getting on. Sorry to hear you couldn't have the stem cell transplant on time but it doesn't seem like you have to wait too long. I am still ok but things are progressing so I don't think I will have much longer to wait before starting treatment. Enjoy the sunshine! Take care Andrea xx

Welcome to the forum. Where are you being treated? There are probably other people on the forum close by. I am 51 and was diagnosed last August and will probably start treatment soon. I wish you and your husband luck in your treatment and recovery. Take care Andrea xx

That is wonderful news

Ange x

Hi Wendy, good luck with your tests. Hope you manage the triathlon! I am a newbie here so find all of you very inspirational. All the best Andrea xx

You seem to be in very good hands and coping really well. Good luck with the rest of the treatment and stem cell harvest. My pp are stable at just under 40 and I am still under close observation. I have read in depth about myeloma so feel prepared! Also knowing that everone here is so friendly and supportive is very reasuuring.…[Read more]