Hi all and Happy New Year! Glad everyone is keeping okay. That’s great Dawn, a good response so long may that continue! Ten cycles seem a lot Ian, good that you are coping with it. How long can you stay on that? Nice for you to be treatment free Peter and good that the paraproteins are not causing any trouble. My paraproteins 2 months ago were 7.8. I had my next bloods done ready for clinic tomorrow but was then informed my appointment has been moved 3 weeks away. I was a bit annoyed because I would have waited 3 weeks to have the blood test. I don’t suppose it really matters though! Our first grandchild was born on 1 January 2016 in Dublin so we have been to meet Alex (our gorgeous little grandson). There will be may more visits as I will be helping out so have no wish to think about work!
Hope everyone keeps well
Andrea xx
Hi Dawn, so pleased to hear that you are doing so well, I was very sick too but did have nasogastric feeding which made me put on weight! The most scary think was trying not to be sick with it in! It took a long time before I could eat ice cream again. I found Diflan was the best mouth rinse and still use it occasionally. It took me a long time for me to recover my strength. If I over did things it would really set me back so I would advise you to take it very easy and listen to your body. I’m glad it was not as bad as you were expecting though!
Hope everyone else is doing okay. My paraproteins are around 9 now and I feel so much better now I have decided not to go back to work. I will have my immunisations next March and maybe do something different when I feel up to it.
Best wishes Andrea xx
Dear Vicki
So sorry to hear the sad news, thinking of you Andrea xxxxxx
Hi All
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 count is low at 2.8 so I am wondering if I will be able to have my immunisations at around 6 – 7 months as originally planned. I am still debating about when/if to return to work. I am still taking Acylovir and Septrin, do most people take this for 6 months?
Best wishes to all
Andrea
Hi Peter, Ian, Dawn, Polly and all
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 vomiting with a very high temperature. I was given iv Paracetamol. Then I developed a really nasty cough with temperature so I am now on additional antibiotics. I think I had done well to get this far without any infections though!
Hope everyone else is doing ok.
Best wishes
Andrea xx
Hi Peter, Ian, Dawn and all,
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 my scarves and wig away and braved my new grey hair, it is very soft and very liberating! My hairdresser said to keep the grey colour, grow it a bit and then have a nice pixie cut. I really don’t want to colour my hair again and so I will give it a go! I am planning to go back to work in October all being well. My husband, son and I will attend the Cardiff info day next Saturday which I am looking forward to.
Peter, have you been given a date for SCT yet? Hope all is progressing well. You asked about aching muscle and joints. I found that this disappeared whilst I was in hospital for my SCT which I was surprised at but I do have it back now. Like you I take painkillers and get on with it!
Ian, hope you are doing ok on Revlimid and Dex and that the acid reflux is under control.
Dawn you seem to be doing really well, that is an excellent response! I know it is scary leading up to and going through SCT but just take one step at a time and you will be fine. If you want to ask any questions etc I will be happy to try and answer them.
Best wishes to all
Andrea xx
That’s great news, hope all goes smoothly for you both now. Andrea xx
Hi Maureen and Ian
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
Hi Peter, Ian, Dawn and all
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 given my pp with decimal places. Its probably not that important though! My next appointment is my 3 month check up at UHW Cardiff with the transplant team next Tuesday so my bloods tests will be with a different lab. I am still doing well apart from expected fatigue but also have carpel tunnel syndrome in both hands which is extremely painful at night. I have had pins and needles in my hands for some time but now the pain stops me sleeping. I saw my GP who said it may get better in time and gave me Ibuprofen gel and Co-codamol. Also I still feel very achy in general but guess this is probably normal. I plan to go back to work in October so have had talks with my line manager and HR who are very supportive, next I have an appointment with Occupational Health.
Hope the information day was informative Peter, also hope you get to SCT soon without the need for Revlimid. I agree with Ian that they may want to keep that ready for remission as they did with Velcade for me.
Ian, hope all goes well for you on Revlimid and Dex. Hope the acid reflux is under control now too, its not very pleasant. Do you know how many cycles you might have?
Best wishes to all
Andrea
Hi Ian,
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 interesting. However awful it is to have myeloma and treatment I do find it very interesting how individual it is to each person. My cytogenetic test was February 2014 and I am glad I have that information, I always want to know as much as possible!
Hi Peter and Dawn, hope you are both doing okay.
Best wishes to all
Andrea
Hi Peter, Ian and Dawn
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 her helping her revise, going for short trips out and watching tv in the evenings.
Peter, hopefully you will progress to transplant soon, it is frustrating having to have further treatment but you seem to be coping well.
Ian, in answer to your question the paraprotein reading after transplant was on 9 March (transplant 19 February) so it is early days. I do have IgG kappa myeloma with ‘high risk cytogentics’ or ‘moderately poor cytogentics’ with deletion 13q and addition 17p. In the near future I expect treatment will be individually tailored to the patient based on their status rather than trial and error! I will have my next result on 14 April so it will be interesting to see if it does go down lower over the next few months. It is good that you have enjoyed 6 months treatment free but disappointing for you that your paraprotein have risen and treatment may be needed gain soon.
Dawn, hope you are coping with the CDT. I did feel shaky and dizzy too, horrible feeling I felt spaced out while walking around and quite out of it at times. I think I coped better with the SCT than the CDT!
Anyway, best wishes to everyone.
Andrea
Hi Maureen
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
Hi Dawn
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 will get through it reasonably well!
How are you doing Peter? Is the Velcade having any further effect and is there any talk of SCT yet?
It is 5 weeks since my SCT and paraprotein after transplant was 12.1 (12.9 before). I just had another course of CDT before transplant so at least I still have Velcade for the future. Regards to Ian and everyone else too!
Best wishes
Andrea
Hi All
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 unless I have to! I hope all goes well for your husband Maureen.
Best wishes to all xx
Hi All
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 received from all staff at UHW Cardiff and RGH Newport was amazing. The compassion and cheerfulness of the staff definitely helped me through the whole experience. Taking it easy at home now and looking forward to a long remission!
Best wishes to all
Andrea
