Hi Mike
Sorry you have had to join us but a very big welcome to you (and your supporters). I´m sorry that I don´t know anything about carrying etc. but did just want you to know that I was diagnosed in 2005 at age 54 and after chemo and a stem cell transplant I am still horseriding and have just come in from painting the outside of the house!
Like you, I only had a few symptoms so they found the MM by accident when I had blood tests for anemia really. Anyway, once they treated the anemia I was fine for just over five years and lived a normal life and continued working pretty hard. It was only when I had rising para protien levels that my specialist advised treatment which I have described above.
This site is really good and the people have all "been there" which can help such a lot because you can "let off steam" in a way that you can´t always do with loved ones because you maybe don´t want to upset them.
Take good care of yourself and please do bear in mind that lots of new things are happening all the time.
Very best wishes
Carol xxxx
Hi
Thank you so much for taking the time to let us know. I´m not in that position yet as my first is still holding out but it had been worrying me about what it might be like when or if I have to have another.
Hope all goes well for you both.
Love Carol xx
Hi
Congratulations. I´m so very happy for you and it´s great to hear such lovely positive news.
I don´t have any experience of withdrawal but will keep my fingers crossed that you don´t have any!
Hope all continues as well as this and better!
Best wishes
Love Carol xxx
Welcome Alethea
So sorry that we have had to "meet" you like this and that you are having such a difficult time.
I do hope that things get a little bit easier for you soon. I think you will find this site very helpful and the people are very kind and understanding. Talking to other patients who understand the condition and the ups and downs that we all help has been a great comfort and support for me. Sometimes I don´t want to worry my husband with yet another symptom or pain etc. and it´s much easier for me to come on here and ask for advice from someone who might already have had that particular problem.
Hope things improve soon.
Best wishes
Love Carol xxxx
Hi Andy
Sorry your having such a poor time of it. Letes hope that your meeting goes well with Dr Jackson.
Just a suggestions but I bought a back support belt (only the cheap 6.99 version) from ebay which has helped me a great deal. It has little magnets for the small of your back but I´m really not sure what they are there for. Anyway, it certainly has eased my constant backache and I haven´t had to take any oromorph since I started wearing it. Anyway, at that price it might be worth a go.
Best of luck over the coming weeks and fingers crossed that they find the right treatment for you – at least you know you have the best on your case now.
Love Carol xxxx
Hi Paul
Thanks so much for taking the time to reply when I know your feeling under the weather.
Sorry your feeling tired and missing some hair but one thing ALL my team said in St James´s was that they were always quite pleased to see these side effects and the more severe the better (especially the hair) as they found it happened when the chemo was really getting down to work effectively – suppose it makes sense.
Sorry it doesn´t look like we shall be meeting up this time but maybe next.
Congratulations to Rachel and I do hope you both enjoy the day.
If I don´t see you enjoy your holiday, try and rest and let your body do it´s job and on that note I will leave you in peace!!
Very best wishes
love
Carol xxxxxxx
ps. I have managed to go for a ride on my big horse this morning for an hour! Not bad when you think that Keith has told me that at one point just after the transplant there were some very real concerns as to how well I was doing and couldn´t manage the stairs at all well until I built my strength up slowly over nine months so please continue to keep your big brave chin up!!
Hi Paul
Just hoping that things are going a little better and that your not feeling too rotten.
Thinking of you lots with fingers crossed for you both.
Best wishes
Love Carol xxx
Dear Siobhan
Thank you so much for making such a brave effort to come and tell us about your Mum. To say she will be greatly missed is such an understatement as you, better than anyone else will know.
I think you must be very much like your lovely Mum and I know for sure that she is very proud of you. Keep listening as I know she will keep talking to you when you need her.
I am so grateful for the positive help and support she gave not only to me but to many others.
Love and very best wishes
Carol xxxx
Hi Kay
Sorry for the long delay in reply but only just popped back on the website as we are staying in Spain for a couple of weeks to see if it helps the pain I have in joints and bones.
Glad to hear that slowing down is helping. I don´t have to go out to work now but I do look after quite a big house and two VERY big horses. My husband is also constantly building around the house – dust and dirt most days but he does enjoy it so Hey ho (and I love the end results)
Anyway, I´m glad its not just me with pain problems after the SCT I had mine in 2011 and the pain in joints really only started to get really bad around five months ago – I could live with it before that but now without tramadol, pregabalin and oromorph I couldnt cope.
I am now on crutches despite trying to keep really active and doing gentle excercises and riding my horses when I can (husband has to help me get on but once there I can manage a very gentle hack as the horse does all the work).
My biggest worry is that the stiffness and pain certainly seems to be getting worse week by week and it´s becoming quite frightening and debilitating.
Any advice, information or experiences that anyone has would really be appreciated.
Hope you improve with perhaps taking things a bit easier.
Best wishes
Carol xxx
Hi Liz
So sorry that you have had the news that all of us who are post transplant dread getting . it´s back. I can only imagine what a blow this is to you both but you sound pretty practical and a great coper.
Hope the treatment goes well and that you have better news soon.
Best wishes to you both
Carol xxx
Hi Antoinette
I am really sorry that I have to welcome you to this site – but a very sympathetic hello anyway.
I understand that you are absolutely shocked to your core but you have found here a very good site where you will find lots of the information, help and support your going to need.
If it helps, I was diagnosed with this rotten illness in 2005 and was monitored but no treatment until 2011 when I started chemo and then a stem cell transplant and a further small dose of Revlimid for a few months. I am now in REMISSION and my pp are ZERO. Although I do have some discomfort and get tired I still do all my own housework, cook etc. and ride two very big, active horses when I can and I am 57 so I don´t think that is too bad!
During the five years without treatment my levels went up and down (once they went up to 26 and 8 weeks later were back down to 14). So in answer to your question, in my case my pp levels often went up and down.
I know you poor brain is twirling right now but could you ask your specialist about the Revlimid trial – called the Myeloma 11 I think. I have been on it and that was how I was able to have Revlimid – just a thought.
Anyway, the people on here have lots and lots of experience in everything both big and small. I have found the main thing is that you can come on here and talk to people who really understand how this thing affects you in a way that you can´t really talk to family and freinds bacause you don´t want to upset your loved ones. The lovely people are so warm and freindly.
I hope that once they sort the dizziness our you will feel a bit les panicky and positive as I know how horrid it is to have the vertigo and how difficult it was to cope with anything whilst I had it.
Don´t hesitate to ask anything you want to – we are all happy to help where we can or just to listen when you get those days when you feel you can´t cope (we all have had them!)
My prayers and very best wishes go out to you on your journey to remission.
Love Carol xxx
Welcome Rosie
Wow! you sound as if you are a real seasoned campaigner – after going through so much I can understand how you might not want to go through another STC – not much fun I do agree.
Glad to hear your coping with everything in such a brave and positive way – you must have picked up lots of information and experience along the way.
Take care of yourself and I do hope that they have it wrong about the relapse.
Best wishes
Carol xxxx
Hi Vicky – that´s the very question I would like to know the answer to.
I have decided that because the cancer didn´t develop fully until I was 52 after my stem cell transplant in February it might take another 52 years to come back again!!!! (Well one can dream).
Please let us know if you do get an answer.
Cheers
Carolxx
No Problem Gail I think your very brave to be coping so well.
Take care of yourself too and try and have a little treat every couple of days – even if it´s only a chat with a girlfriend or doing your nails!
Love Carol
xxx
Hi G
So sorry you had to join us but there are lots of good people on this site who have lots of experience of just about every emotional and practical aspect of coping with MM.
It´s nice to know that you can always come on here and ask/say the things that maybe arn´t quite so easy with family and friends. I really have found it a real support during the last couple of years. You ask away or simply have a moan – everyone really does understand and is on your side.
Best wishes
Carol xxxx
