Dear Siobhan
I am very sorry to hear of your mum passing. I only knew her a few months but she was inspiring. There are a lot of inspirational people on this site but in my opinion your mum was the star. She gave advice and comfort freely and helped me when my head was filled with dread of MM when I was first diagnosed.
I hope you can gain some comfort in your grief at all the respect and love all your mums friends on this forum had for her. I'm sure she was as equally loved by all in the "real" world too.
Take care and be proud
Andy XXX
Hi Keith
Yeah I self administer the injections. It's not too difficult you soon get used to it.
All the best
Andy
Hi Keith
Good luck with the Rev/Dex treatment. I hope everything goes well for you. I'm on Rev 25mg for 21 days then 7 days off and Dex 40mg days 1-4, etc with tinzaparin injections everyday. I get the usual Dex moods 🙁 but I think I'm tolerating Rev ok – just the occasional slight cramping in my feet at night time and a bit of tiredness. My taste is coming back to me 🙂 and hopefully my PP's are taking a kicking. I'm halfway through my 3rd cycle.
Have fun in Jersey and I hope the sun shines down on you both.
All the best
Andy
Hi Helen.
Glad to see you enjoyed yourself in New Zealand.
I asked the same question about how long do I have to keep up the 3 litres a day a couple of weeks ago and got the same answer – forever! Fortunately my taste for beer has come back a little so that does help 😉 I was getting sick of just water and tea. So now I have a beer or two a night. Though last night I went out and nearly had my quota in beer alone. It's been a long time since I'd drank so much.
Glad to hear your planning more trips and hopefully everything will fall into place with your plans.
All the best
Andy xx
Hi Keith
Sorry that your fears have been confirmed. When we spoke at the support group you were very sure you'd relapsed. I'm on the Rev/Dex regime though not as maintenance as a treatment. Just started my 3rd cycle Saturday. Hopefully it'll do great things for us both.
Have a great time in Jersey and come back fighting fit ready to take on this next challenge in the battle with MM. You'll soon be sat in the sun watching England thrash the Aussies in their own backyard.
Wishing you all the best.
Andy
Hi David.
I'm on revlimid and dex as a treatment after all other treatments failed. I have just started my 3rd cycle. My paraprotein level came down slightly at the end of cycle 2 from 41 to 35. Not a big fall but it was in the right direction. I'm not getting to excited about the reduction because I've been slightly lower before. I do get nervous now when my PP test is due each month due to the fact that my options are getting low so I need Rex/Dex to work. Funnily enough I don't feel ill I just have trouble with my back!
I don't think you should worry too much about your original prognosis as that will have been given with "old" data and as we all know in MM land things change quickly. I'm trying to live my life normally in between hospital visits, though I'm unable to work, and I'm now planning holidays away. Hopefully I'll feel confident enough to book a trip abroad to Greece later in the year. I owe it to my wife of 8 months to LIVE with MM and try not to let it blight both our lives. I do like your attitude and I find inspiration from you and others on here. I've only been diagnosed since oct 2011 but I'm getting more comfortable living with MM so that it doesn't dominate my every thought and like you and others I try and live for the now because tomorrow there maybe a bus, lorry or car with my name on it and MM won't even get me 😉
Live the moment.
Sorry – I think I've rambled a bit – I blame the Dex 😉
All the best
Andy
Hello Jen.
Welcome to the forum. Sorry that you have had to join but hopefully you will find plenty of support and advice. Multiple Myeloma is an awful disease that presents in many ways. Everyone's journey with MM is different and so is their treatment.
I was diagnosed in October last year and as yet have only had one lesion as far a I know. Bone damage is common in MM and is usually the first sign of the disease. I myself suffered back pain and have suffered spine damage.
Once your dad has his skeletal survey you will have a clearer picture. As to his bump I don't know – sorry.
You and your family are in for a roller coaster of a ride during your dads battle with MM but you can be sure of helpful support and advice from the members(friends) on here. Ask anything, scream come on for a good moan and let of steam you will always get a response.
Best wishes to you and your family and especially your Dad
Andy xx
Hi Jane.
Welcome to the forum. You will find lots of support and advice here. Good luck with your treatment and your fight against MM. I myself was diagnosed Oct2011 and have had my ups and downs with my battle with MM. It's important to listen to your body and if your feeling tired rest up.
Take care.
Andy xx
Hi Chris
Welcome to the forum that we would all rather we had never needed. You will find that we are all a friendly bunch and some a gold mind of information. Ask any questions you like and you will get honest and frank answers you will also get lots and lots of support. No two peoples journey along the MM road are the same we all react differently to the drugs but hopefully not too badly. I hope your husband sails through his treatment and has a great outcome.
I personally think it can be as hard and sometimes harder to be a carer in the battle against MM.
Wishing you both good luck.
Take care
Andy xx
Hi Paul.
If everything went according to plan – which I hope it did – you should be out of hospital now and recovering from the treatment. I hope you didn't/wont suffer to many side effects and those stubborn pp's have been given an a**e kicking.
Take care.
Andy
Hi Eve and Slim.
What great news Slim is back home.
Hopefully the road ahead will be smooth and pass quickly till Slim is into a long remission.
Wishing you both all the best.
Andy xx
Hi Teresa.
My bone marrow test wasn't too bad on Tuesday though the doctor had to go in twice! My blood test showed I was Neutropenic so that meant I had to be careful and try and avoid people with bugs. Today I went for more blood tests and also saw my consultant. My bone marrow test showed my healthy marrow had been cleaned out, hence the reason I was Neutropenic, and she was hopeful my paraproteins had been hit too. So another nervous wait till I get the results of my paraprotein levels. As I'm still Neutropenic my socialising will have to be restricted for a while – I don't want to get an infection and a hospital stay! My next cycle of treatment has been put back a week whilst I recover.
I hope you had a great birthday Tuesday and your leeks do really well 😀
We have had a sunny week with the temperature in the mid 20's.
It'll be good for Peter to see his brother and sister in law and hopefully you'll all have a good time.
We are really looking forward to our break in the lakes hopefully the weather will be ok but if not we will just have to wrap up well and visit a few pubs 😉
Have a good weekend.
Take care
Love Andy xx
Hi Paul.
I've had the DT PACE treatment. I only had one cycle of it though and it was deemed to be a failure for me. It didn't bring down my paraprotein levels but there again none of the treatments I've been through have been successful at lowering my levels below the mid 30's.
I coped ok with the DT PACE I didn't have any serious side effects other than my immunity being wiped out. Oh and not needing to shave for several weeks afterwards. It's a bit awkward having 2 lines of drugs going into you 24 hours a day. I had a 5 night stay in hospital. I can't remember what they gave me but I had a to have an infusion for a few hours before they started the DT PACE and afterwards had to hang around for an injection which all added up to a 5 night stay.
I know what you mean about burning bridges I feel my options are running low.
I hope you have better success with it than I had and you get your levels low enough for your sct.
Good luck
Andy
Hi Teresa.
I'm glad you had a good time at the brew pub for mothers day. I hope this weekend goes well for you and Peter with your children and grand children around you for the long weekend.
I go for my bone marrow test on Tuesday – though I'm not looking forward to the test itself it's the results I'm more nervous about.
We had a fun night out last night we went out for a meal then saw Rich Hall an American comic and rounded the night off with a couple of drinks watching a local band.
Have a great BBQ and Queen Victoria day 😉
Give our best to Peter we wish him well.
Love Andy and Steph xx
Hi Antoinette.
First of all welcome to the forum. None of us want to be here. You'll find lots of support and advice here in your journey and battle against MM. Everyone's journey and treatment is different. It's a very individual disease.
Myself I was diagnosed in October 2011 and I'm or rather my paraproteins are proving to be a challenge to the medics. Others on this forum sail through to a stem cell transplant and get years of remission. Hopefully you'll follow the later course.
There are new treatments coming along all the time.
Please feel free to us the forum to express your emotions, shout, scream, and even laugh you will feel better letting it all out and you'll always get replies and advice.
Take care
Wishing you every success in your battle against MM
Andy xx
