Hi Emma
glad your mum has turned a corner, my mum hasnt had any ore finger paindespite her thalidomide being increased to 150mg every day. She has been really good until getting a chest infection a few days ago but she is on the mend i am just hoping when we go to hospital for cycle 4 they feel she is over it enough to let her carry on with no breaks. i have just been more worried about the weight loss because she has been eating well. this is just such a rollercoaster just when you think a corner is being turned and feeling more positive along comes a problem. but just like you i have to stay positive and plod along just really hoping to get to the end of treatment and be drug free and a long remission.do you think your mum will get home anytime soon and will she be ok on her own
Hi Emma
just wondering how your mum is doing and is she home or in hospital, mine about to start cycle four but has a chest infection at the moment so hope it willnot stop the treatment.H as your mum lost any weight mine has lost over a stone despite eating fairly well just wondered if the drugs did this
hi there
My name is Sharon and i too have a mum who was diagnosed in december just before xmas so made for a terrible time with all the worry, which didnt help when my dad died suddenly at my house between xmas and new year. However on a positive note my mum was also fit and well at 69 years of age no infections ect so really hard to take having to start treatment , she also was being monitored for 3 years. we started treatment early jan just before my dads funeral and a bit up and down till now good and bad days and a fair bit of weight loss despite eating well but in the last week seemed to have turned a corner hope i will last had hospital last week bloods are all good and protein has gone down by half after just one course of treatment so feeling a bit more positive now and hope it will last. this is a very difficult position as i am an only child and have noone other than my husband kids and friends for support which sounds terrible but thry dont feel as i do as she is also my best friend which i have been so lucky to have but makes it so hard but here is hoping for better days to come for all of us
Hi my name is Shaon and new to this site as well i am a carer for my mum who has been diagnosed with mm in dec and is now just on second round of CDT. She seems to suffer just with sore bones 2 days after coming off dex, but can i ask if anyone suffers tremors on thalidomide, sometimes it is worse than others, also after her infusion of zometa she was more shaky and really sore bones the next day any advice welcome,This is so hard as she smouldered for 3 years was totaly well and full of energy but pp jumped from 14 to 29 in six months so following a bone maow it was decided treat was required and she has not been great since starting and to make matters worse we lost my dad suddenly at xmas time so a lot to get our head around.She has no kidney damage and was only slightly anaemic which has resolved in the last week now hb up to 11.4, no results from skeletal survey which was done in dec so hope no news is good although she is suffering with neck pain so waiting on mri, she was given gabapentin but felt they knocked her off. Sory came on to ask advice about one thing and have gone on and on just finding this all so hard to deal with just now but reading all the positive posts is def a lifeline thanks again
Hi Emma
Not seen you posting for a while and just hoping that all is ok with you and your mum, i am guessing you ae busy with being back to work, drop me an e mail if you get time
Hi
My name is Sharon and i am caing for my mum who has recently started CDT for her myeloma after 3 years smouldering this is near the end of her third week.
The terrible thing is she was well at 69 years of age and had no symptoms it was just her para protein that went from 19 to 29 then had bone marrow to confirm treat was neccessary. Since starting treatment however she has had lots of symptoms mainly bone pain in arms legs and neck and i am just wondering if this is common she is good on steroid days with hardly any pain but after 2 days off the pain comes so i am not sure if this is the treatment doing its job or its not working and disease getting worse, we have hospital on thur for second lot of meds but any advice would be appreciated
Thanks for your message this is a total nightmare and dont know where to put my feelings right now. My mum is well at the minute and on her first week of treatment but i dont know how the future will be. I am so sorry you are in the same position as me but good to have someone to understand how it is, fingers crossed for your mum
Hi Tom
I would be grateful for a copy also as my mum has just been diagnosed and starting treatment tomorrow
Many Thanks
my e mail is rachaelhannaherina@yahoo.co.uk
Emma
I am not great on all these sites cant seem to get ur message today or find ur e mail adress mine is rachaelhannaherina@yahoo.co.uk so maybe you could mail me again to give me your update
Hi Emma
Sorry just replying to you i cant seem to find the message you sent to me at all . I hope all is good with you and your mum, my days have just got worse with my dad passing away suddenly after xmas and now got to have mum starting treatment on thursday, i feel as though i am in a bad dream, just hoping that thiungs will get better .We have had my mum and dad staying with us since xmas eve which let me look after both of them so that was a good thing that he was surrounded by us and the kids. Please try and send a message and hope i will get it was it to my yahoo adress
Hi Emma
Sorry not been on for a few days with it being Christmas and all, not that i have felt much like it at all, just want to get treatment started and try and look on. Mum and dad been staying with me she has had a chest infection and thats before anything starts at all nearly finished course of antibiotics and had chest x ray last week now i am panicking that that is ok.Until that i was trying to be so positive now i feel i wake up with my stomach churning and looking at her and thinking how pale she is and a bit breathless as well not sure if this is down to her anaemia , chest or the aclovir tablets but will c how she is tomorrow . I think this time of year is so bad as you want to be happy and having fun but this is hanging over you and the days feel so long . I also get comfort from this site as well as people understand. I hope your mum is ok and she is definately in the best place getting the right care, keep in touch thanks again.
Sharon
Hi Emma
Thanks for replying, firstly hope your mum is doing better as it is a further problem to cover hospital visits as well as kids and work and if you are like me you would not miss one if poss that is why it is so much easier when they are at home. My mum has only had a 4 day course of dex and some anti viral tablets along with losec for her stomach she is due to start CDT on 3rd of Jan which i am not looking forward to, would you beleive i am a nurse but know nothing really about haematology but sure i am about to learn fast. I am so sorry you are in this position but feel that you at least can understand me and i you, I have a great husband and great kids but feel like a child myself not able to do without my mum, at times i have been on my knees crying and the next very positive all of this of course my mum is unaware of. I seem to be able to tell others how i feel but cant say it to her. I do not want this to be about me so sorry if that is how it seems and yet i am needing the support.Thanks again for being honest it has made me feel so much bettter in fact this site does give much hope and we need to look forward and try and be positive
Hi Emma
My name is Sharon and i am also looking after a newly diagnosed mum she is 69, i am an only child have 4 kids of my own but feel really alone and devastated by this disease so great to read that your mum is doing better and that things can and will improve. I am new to this site as well so finding posts from everyone in every section and i see from one of your previous posts you are an only child which makes no difference really but you feel so alone despite being a parent myself as my mum and i are best friends and so much a part of each others lives, and even talking like this i feel so selfish as though this is just affecting me. Like you i am trying to be strong and positive for her and then on my own find myself distraught what a rollercoaster,anyway hope my mum will also do well and we will all have many more years together she is ready to start treatment on 3rd Jan so everything crossed thanks for reading
