Hi Tom,
What a faff on getting into this new site! Please forgive me I’ve been off this site for a while as my mum has been doing well and we’ve tried to put MM to bed for a while so we could enjoy the Xmas period considering last year was pretty pants. Now catching up and discover you will be going back on treatment. I always think about you so when I saw that my heart sank a little. That said, you’re Onwards and Upwards Tom, positivity is the key! On to the next step in this journey. Best wishes. Incredibly sad new about Dai.
Emma. X
Hi Ali and Vicki,
Mum is mobilising really well. She's using 1 walking stick and has had her shoes build up so she's even after losing 2 inches in height. She certainly seems better in herself now and I think it's just a relief for her not to be talking all of those tablets. I'm glad the weather is picking up now, she came home on a lovely spring day and at least now she can get out for short walks to start feeling 'normal ' again.
Ali how's your mum doing? I read that she's been poorly recently. I hope she's managed to see the infection off and continue to enjoy her remission.
Vicki, I hope Colin is taking things easy these days and feeling well.
I agree the thought of mm reappearing needs to be put to the back of minds and live for today. If and when it returns we'll deal with it again hopefully in the same successful way as before. As will you Helen I'm certain.
Love Emma. Xx
Hi Helen,
Mum came out of hospital 3 weeks ago and came back home. She's doing really well. It's taking time for her to settle and build her confidence again after 4 months in hospital. She had her appointment with consultant this week and we received the good news that CDT has done the trick and now she's on 3 monthly checks. We are all very happy, though for me it's bittersweet as you just never know when it will raise it's ugly head again.
Love Emma. Xx
Helen,
I've not been on here for a while and am just catching up now. Sorry to hear relapse has been confirmed, however it ends the limbo period of uncertainty. I'm glad you feel generally well and hope they can get on top of your pain ASAP. I look forward to reading that Velcade does the trick for you and hammers the nasties back into remission. Positive thoughts and hugs coming your way.
Love Emma. Xx
Fantastic news Peter!
Congratulations, such nice news to read before I close my eyes for bed. My mum finishes her 6th cycle of CDT on 5th April and am keeping everything crossed for positive results!
Love Emma.x
Hi Jackie,
So sorry your mum has been diagnosed with mm and acute kidney failure, however you really have come to the right place for advice and support. It is my mum who was diagnosed with mm in oct 2012, it is such a massive shock and one which is difficult to come to terms with especially when doing Internet research and reading some very unpleasant things.
Stick with this forum and you will feel far more positive and well informed in the coming weeks, months, years.
My mum was diagnosed after months of terrible back and rib pain and feeling very low. It was established she was anaemic and her kidneys were in a bad way. After numerous X-rays, MRI and bone marrow biopsy it was established myeloma had destroyed one vertebrae hence the pain. She was admitted immediately for fluids and monitoring of her kidneys and luckily they have recovered sufficiently and she was able to start CDT in December.
She had a fall at home a week into her 1st cycle and broke her hip so she's been in hospital ever since still having her chemo. She's got 4 more weeks to go and although its been tough on her body she's stayed positive throughout a dis coping very well. My mum also said at the very start she would give it her best fight. To be honest I fell apart at the beginning and still have my days now, but so proud of how my mum has handled it all and fingers crossed is on the road to remission (we have not been given blood results yet but as Tom on here says, if the dr is smiling he's happy. Mum's is so we are.
It's really tough on family members watching their loved ones go through this and feeling helpless to do anything, I honestly have found so much comfort from the lovely people on this forum who I'm sure will drop you a line as well. There will be many on here with kidney problems who will be able to give you much needed advice and support.
Love and best wishes to you and your mum.
Love Emma. Xx
Sharon,
We initially asked for a referral to the dietician at the hospital to monitor mum's weight and things. Since then they've been great. Mum has ensure supplement drinks and although its not a replacement for food really helps On the days when she has struggled to get food and fluids into her. On her steroid days she tries her best to eat as much as she can and make the most of her appetite. I thought she was going to waste away initially as she lost so much weight but she's quite stable now and not losing anymore. See if your mum's dr will refer her.
Mum has been on walking sticks today and is attempting just 1 stick tomorrow. I'm hoping once the chemo is finished she can come home as its 1 less thing for her to worry about.
My boys start full time nursery on April so I will have more time to be there for her when she does come home. Hopefully she'll have people popping in 4 times a day until she's settled.
Glad to read your mum's pp's are coming down nicely. We've not been told mums results but the dr said she's really happy with mums progress so hoping its a good sign.
I'm feeling more positive lately. Xx
Hi Sharon,
Yes mum is still in hospital, 4 weeks of CDT left. She initially lost 2 stone but has put a stone back on. She's had anti biotics regularly for suspected chest infection and urine infections but she's been ok. They're not going to operate on her hip so she's doing physio to get better mobility.
So glad your mum is coping well with it and is onto cycle 4 already, half way there.
Hope you're doing ok too. Is your mum having any more problems with finger pain?
Love Emma. X
Hi Sharon I'll reply on my other post 'ah so this is dex' so as not to intrude on Jane's post. X
Jane,
It's tough news to come to terms with, it is my mum who is 64 who was diagnosed with MM in October 2012. If I can give you one piece of advice that certainly seems to be a common theme on this forum….Positive mental attitude. My mum has remained positive throughout her CDT, she is now on cycle 5 of 6 and is doing really well. Just remember everyone has different experiences on their treatment. If you view my previous posts it was quite daunting at the start of the treatment journey but now as CDT is nearing the en I can honestly see an improvement in mum, and I'm hoping this is good news. Dex has been great for her for the 4 days each cycle with improved energy levels and appetite, however she did suffer with the down days afterwards but as long as you (or someone else) keeps a note of how you feel each cycle and you can kind of predict your good days and bad days. It is doable and you will get there.
Best wishes, keep us updated with your progress and any concerns get on here for a chat, advice and support it really helps.
Love Emma.x
Absolutely fantastic news!! Great to hear all if that hard slog was worth it!!
Love Emma. Xx
Fantastic news Tom!! It's lovely to hear you are doing so well and to read positive things on here! Hope you and Elaine are celebrating the news with a nice tipple and a lovely valentines meal!
Love Emma. Xx
Hi Peter so glad to hear you are doing so well after your SCT! I think you definitely deserve the star pupil award. It certainly has to be mind over matter in the fight against MM. You're doing a great job and encouraging others in the process.
I'm just looking back at your old posts regarding your journey on CDT as mum is now on her 4th cycle. 5 weeks left. I really hope she gets some good news and a break from treatment to begin to feel 'normal' again, what ever the new normal will be!
Take care of yourself,
Emma. X
Thanks Tom and Helen for your kind words and supportive advice. Mum was in a more rested mood tonight, I'm hoping it was partially down to the Macmillan nurse visiting her. 1st time since diagnosis. I have heard so many positive things about Macmillan and am looking forward to meeting the lady. Hopefully she will be in regular contact with mum so it's another person she can chat to instead of just boring old me!
Emma. X
Hi Eva,
Thank you for your response, what I meant was mum does not want an overnight carer. As far as I am aware mum would need to pay for an overnight carer if she felt one was required, but my mum is a very proud and independent lady and does not want a stranger in her home. Unfortunately I would not be able to stay overnight with her due to having a young family.
Emma. X
