Hi Nadine and welcome
Hope this helps. I had my STC in Feb of this year and although I can´t say recovery was as quick as I would have liked I am now in remission so I can´t ask for more.
I do get very tired but on the other hand that could be because I look after three horses every day, do all the housework and cooking and shopping, laundry etc. Today I have had my grandchildren all day aged 8 and 4 – they are the most exhausting! I know how hard it must be but whenever possible try and think about all the positive things that will come after mum recovers from the SCT- your mum is so lucky to have a super daughter like you.Enjoy your holiday!
Very best wishes to you all
love Carolxxx
Hi Amelie
Sorry to reply so late but I have only just read this. I had my SCT in Feb of this year and yes, I am FED UP with my itchy back and my medical team see to think it´s to be accepted – just the result of the Melphalan and resulting very dry skin.
However, I´m going to investigate eosinophilic folliculitis further and see if I can get something to calm it down. Fortunately I only have it now on my shoulders mainly but still, it really does drive me bonkers!
Best wishes to you both.
Love Carol xxx
Hi Paul and welcome
I am on the Myeloma 11 trial with Revlimid. Hope this helps – I had my stem cell transplant in February and although I haven´t found recovery a swift process (I´m a horse rider and sailing kind of person so I´m sure you understand my lack of pacience!) my paraprotien level is now 00. Basically this means I am officially in remission and getting stronger and brighter every day.
I am also being treated at both Huddersfield, Halifax and St James (for transplant) Dr Feyler is my specialist and she is fantastic!!
I haven´t read all your posts so I suppose I have missed lots but anyway, take care and best of luck with the treatments.
By the way, I should tell you that I am back riding my two horses one of which is an ex race horse 17.2 hands, young, at times giddy but very handsome and am currently in the midst of planning a trip to Spain with both horses. So when you get the odd dark day during transplant grit your teeth and repeat "just keep breathing because this will pass". I put photos of husband, son with grandson and Harry the horse up and stared at them until I felt better!
Best Wishes
Carol
p.s Re dexamethazone I did get to the point where I thought it might be worth my while getting a night job as I could never sleep but it did the job.
Dear Min
Please don´t be silent. Not only would we miss your kind, common sense approach you might just miss us too! Having been widowed I do know what a help friends can be when your going through such a traumatic time so pleae do make the most of us.
I´m really glad that the funeral went well – what a comfort for you all.
Try to take care of yourself – every day is an achievement.
Best wishes
Carol xxxx
Hi
I had my SCT in Feb and the last three months I have been back on Revlimid. In addition to the usual symptoms you mentioned I have felt quite strange at times. I describe it to my husband as being like a goldfish looking out as everything seems rather vague and distant. I have also had some worrying short term memory losses and there are some days when I certainly wouldn´t drive a car or ride my horses.
The side effects have become so severe that tey are giving me a "holiday" from the Revlimid while I hopefully start to feel better.
Don´t know how your husband is continuing to work. I loved my job but couldn´t possible have kept it up any longer than I did. I hope you can persuade him to rest when he can (not easy I know to persuade us to slow down!)
Hope things progress well
Best wishes
Carol xxx
Hi Bridget
Thanks so much for letting us know how you are getting on. I often think of you but don´t want to pester.
Sorry you are suffering with the pain and just praying that they get on top of everything for you soon.
Prayers and very best wishes are with you
love Carol xxx
Hi Ivan – what fantastic news. I don´t understand all the "ins and outs" but I do know that such a drop indicates that they have the cancer on the run!
Best wishes for continued good news.
Carol xxx
Hi Keith and Helen
Luckily I didn´t have any problems like yours but I just wanted to send you my very best wishes as I know how under the weather you both must be feeling at present.
Keep your chins up – had my sct in Feb and for a little while wondered if I would ever feel stronger but yesterday I rode my new horse and cleaned lots of mud off my two others. Also managed some housework and shopping – all things I could hardly contemplate a little while ago.
Very best wishes to you both
Carol xxxx
Hello Graham
Just wanted to extend a very warm welcome to you. Seems we were diagnosed in the same year but I only had my stem cell transplant in Feb of this year and after further velcade am now in remission.
Good luck with the Harvest and very best wishes – hoping that the GMX has produced lots of the little wrigglers for future transplant!
It´s a pretty stressful time for you and we send our prayers and best wishes to help you through the next few weeks.
Love Carol xxx
Hi Aileen
Just popped into the site, saw your post and wanted to say welcome but really sorry that you find yourself needing to join us.
I have found this site to be a huge support and there is always someone who has had experience that they are willing to share with you or perhaps talk over what options etc.
Sometimes, I have even found myself just "letting off a bit of steam" rather than burdening my poor husband and son and everyone has been really understanding and kind.
If it helps at all I was diagnosed in 2005 and have had a stem cell transplant, all of which have allowed me to return to riding my lovely horses and doing many of the things I did before.
There are many and varied treatments out there and many more in the pipeline so take a deep breath and ask anything about anything at all that is worrying you. The smashing people on here are all willing to help wherever they can.
Thinking of you and sending very best wishes
love Carol xxxx
Hello Alexis
Just wanted to say welcome (but obviously sorry that you need to be here).
I too am on Revlimid and am always interested to share experiences with others who are also using or have used Revlimid.
Best wishes
Carol
Hi Julie
Smashing to hear from you – but so sorry for the news about your poor husband. The expression never rains but pours springs to mind – you both sound to be taking things as much in your stride as you can though and I hope you can go forward with your plans soon.
We went over to Spain to check out the house last week. Also, my husband, Keith, wanted to see how I coped with flying, heat etc. I was quite poorly that first couple of days but that was the Revlimid effects building up and I had to stop taking them. I had already talked to my specialist about the neoropathy etc and she thought I might have to have a rest shortly so not unexpected. I´m starting to feel better now – poco a poco.
Regarding going back to Spain again – because there is so much work to do (there was a flash flood last summer and no one had had the heart to tell me) there is a great deal of work to be done. Fortunately the house is ok structurally but much of the padock and outbuildings are wrecked as is the driveway and gardens. Also, whilst we have been away neglect and thieves have taken their toll and the whole house needs redecorating and refurnishing. It´s going to take a couple of weeks to organise and as Keith (hubby) and I don´t want to be apart for so long we are seeing the specialist on Monday and will ask if my levels are still good enough for me to be away a couple of weeks. We just consider ourselves very lucky that the flood couldn´t reach the house and the Keith is a builder so we are not faced with such a large bill as he will just employ a gang of local builders to work for him and he can keep an eye on things.
Keith is taking a couple of horses down for me so that I´m not tempted to try and work whilst he is busy (he knows me too well!) and has bought me a lovely 15 year old school master who is much calmer than my youngster who is coming too. Luckily these horses are past racers and competition horses so they are fairly used to travelling and Keith will take his time travelling and use the stable facilities etc.I will just fly out when they have arrived, hopefully all in one piece.
Well, that´s the theory and plan Julie – lets hope it all pans out. Keith is planning to set off towards the end of next week or the one after.
How are you feeling in yourself after the upset with your husband ?(I always find that emotional upsets affect the MM more than anything but hope you don´t).
Anyway, I am crossing my fingers that everything improves for you both soon.
Take care and please do keep in touch my email is carolbradley@live.co.uk -feel free to use that if you prefer.
Love Carol xxxx
Can´t add any advice but I did just want to wish you all well. I know what your saying about they don´t want to investigate because of her other issues but how does your Mum feel? I know when I was very very ill I was beginning to feel I was a huge long burden to my poor husband. It´s only now that I am much much better and life is returning to something like normal I can see that the last thing he thought was that I was a burden – he just wanted me to be prepared to fight but knew it was my decision to make as at times it hurts to fight and he hated to see me suffer.
It´s such a very difficult time for you all but I think I might be tempted to ask your mum if she is prepared to let them investigate a little further to see if they can come up with a treatment plan. Anyway, it´s worth a conversation if only so you perhaps get an insight into how your mum is feeling.
Your doing such a great job of supporting her and we can only send our prayers and very best wishes to you and your family whilst you get through this rotten time.
Love Carol xxx
Hi Debs
Just to let you know I have been on Reblimid for three months and like you, am exhausted and the nerve problems in my feet and hands are annoying and uncomfortable – also have tummy upsets etc. etc.
Just returned from a couple of days in Spain during which time I had to stop the tablets as I just felt so absolutely rotten. It wasn´t entirely unexpected and I don´t think it came as a surprise as my specialits had already talked about my having a rest as my symptoms were becoming a tad grim and my paraprotien has dropped to 0 at present.
Hope you manage to stick it out longer from me and that your symptoms settle down shortly.
Take care
Love Carol xxxx
Hi Nadine
Welcome – although like everyone else I´m sorry that you have had to join us. Do you think your mum would be able to manage joining the site now that you are finding your way around? I suppose we mums always want to be strong for our children and I know that I am guilty of that – but here on this site I can be honest about how I am feeling without worrying about burdening fellow sufferers as they understand so well and are a wonderful support. Also, it´s quite helpful to talk to people similar in age and same stage of the myeloma ·journey" and how they are doing and handling things – what questions to ask regarding treatments etc.and other peoples experiences and what to expect.
Your mum may well be very frightend and doesn´t want to admit it even to herself (I know I didn´t having been a coper all my adult life). I know that I am not keen on letting my children and grandchildren see me when I am having a bad time of it as I don´t want to worry and upset them which I suppose is silly but there you are.
I think you are proving to be a smashing support for your mum – just getting onto this site shows how determined you are to help her as much as you can so please take time to look after yourself too won´t you?
Best wishes to you both, especially during the run up to and during the cell stem transplant process. It can be a rocky road and your mum is really lucky to have a loving and caring daughter such as you.
Love Carol xxx
