This topic contains 22 replies, has 6 voices, and was last updated by 
Emma 11 years, 2 months ago.
My mum (64 years) was diagnosed with MM 4 weeks ago, she had a brief stay in hospital due to impaired kidneys. She was immediately put on dexamethasone and various pain relief and anti sickness tablets. We both read about the possible side effects of Dex and I was surprised her mood and attitude did not seem to alter…..until yesterday! She has definitely become more sharp with me and snappy which is so unlike her. I now feel like I need to contact friends and family to give them the heads up so they don't get offended if they give her a call and she's a bit off with them, as she needs all the support she can get and I don't want people being put off ringing her of wanting to visit.
Mum has had 4 radiotherapy treatments since leaving hospital, she finished last Friday. The after effects have caused her to feel tired every other day. Yesterday however I noticed she was quite shaky and did not seem as stable on her feet as she has been. She uses a walking stick due to severe spondylosis, and as we recently discovered a fractured vertebrae due to MM (this was the reason for the radiotherapy). Chemo has not started as yet, mum has an appointment with her Dr on 13th November. She was asked to complete a 24 hr urine sample prior to this appointment which we returned on Thursday. (Mum had previously completed a 24 hr Bence Jones urine test in hospital). Initially the Dr was talking about CDT, however it has not yet been confirmed, I think this is to do with concerns regarding her kidneys and the possible effects the drugs may have on them. Mum's nurse explained they may decide on a different combination of drugs which may be more gentle on her kidneys. I'm not sure if the urine test will assist them in deciding what treatment is best.
She's been doing really well since leaving hospital and drinking 3Ltr of water without difficulty. She was in such pain prior to diagnosis it has really helped now they pain is being eased by the pain relief medication and she has definitely found the Dex has increased her appetite!
I've taken time off work to support my mum since her diagnosis and am due back next week, I was hoping she would have been started her chemo by now. I'm not sure if we will have a definitive answer on Tuesday and if she will come home with a load of tablets to start on straight away. Plus, has anyone got any advice/info as to why mum was put on dex as soon as she was diagnosed. I understand it forms part of the chemo treatment but am concerned as she has already been on it 4 weeks prior to chemo, will she have to continue taking it after the chemo ends?
I haven't mentioned her snappyness to her as yet, I thought it best not to! Lol.x
Emma.x
Hi Emma
Glad to hear your mum is feeling better,there is so much to learn when starting treatment,so it is a big learning curve.:-)
When your mum starts treatment everything will be explained,about tablets when to take them and the best times,there are a lot of tablets so go out and buy a pill box,and make a chart makes life easier.
Kidneys recover,but they will keep watch on them,those big bottles will have to be filled every month,they can get heavy,so make sure mums not carrying them,PP and Kappa light chains bloods tell them how effective is the treatment,you can get copies or sometimes they give you a book that can be filled in each cycle so you can see progress.
It is going to be very hard,with all the tablets,mood swings,plus not feeling great,but it is do able,your mum will need your support,if there is a support group or a Myeloma Day in your area it is worth going ,it will boost your mum,and she will realise there are lots of people in the same situation,plus lots of carers as well.Eve
Thank you Eve,
I have been looking at the big pill boxes and suggested getting one to my
Mum, so I'm glad you've recommended getting one. I'm also looking at getting mum a thermometer, having read so much advice in this forum I think it might even been a comment from yourself about an ear thermometer to keep an eye on temperatures for signs of infections.
I'm keeping an eye on where and when the info days are as I certainly think it would be beneficial for us to go. We're up in Northumberland and I think we just missed one in Sept, prior to us having any knowledge of MM.
Thank you again for your advice,
Emma. X
Dear Emma
Taking temp every day when on the chemo is one thing I found vital, you need early warnings as you feel quite rough anyway.
The Newcastle support group meets on Monday, the details are on the web site here, might be of use?
Love Helen
Hi Emma
I was also in hospital with kidney failure, which led to my diagnosis (Feb 2011). Literally within a couple of hours of receiving the diagnosis, they put me on Dex. I didn't start the other medication (Revlimid and Cyclophosphamide) for a few days, when I chose to go on the Myeloma XI trial. When I queried why they started the Dex so soon, they said that with MM, they need to act quickly, which is different to some cancers, when you have time to consider different options. The Dex gets to work on the cancer straight away.
I don't know what your mum's consultant and specialist nurse are like, but I have always been able to ask lots of questions to better understand what's happening and make decisions about treatment. Please just ask and ask.
Best wishes
Jet
Thanks Jet,
We saw the consultant last week who was surprised mum's dosage of dex had not been reduced by the Dr we saw for the radiotherapy, therefore were told mum's body was addicted to dex and she needed to be weaned off it over 2 weeks. That's all done now and she's handled it really well. Luckily we asked for copies of the letters between the consultant and GP as that has informed us mum's kidneys have improved significantly and were in a very bad way when she was admitted to hospital. I think we caught her Dr on an off day last time as this info was not shared with us and we were left feeling a bit bewildered after that appointment, having been told there were still uncertainties about what chemo mum could have due to kidney issues. The letter states due to improvement in her kidney function she is eligible for CDT and looking to start tomorrow 27th.
Mum's nurse is great thankfully.
Emma. X
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
Hi Sharon,
Yes being an only child and a mother at that makes things so difficult as there are very few people to step in and ease the pressure and share the load. I want to be there for my
Mum as much as possible but kids and work make it difficult. What treatment is your mum going to have? My
Mum is on CDT. She's currently in hospital due to blood clots on her lungs from the chemo which resulted in her having a fall and breaking her hip! I keep saying to her, 'if it's not one thing it's your mother!'. She's still on the chemo and hopefully once that's out of the way she will get her hip fixed. I'm really hoping for good news after cycle 6 so we can forget about MM. At the moment it is in every thought!
Hope you have some support as I have also found this totally devastating. Myeloma uk has been great and the people on this forum are truly fab and can offer so much advice and support.
Love Emma. Xx
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 Sharon,
How are things with you and your mum? I totally understand how you feel I'm up and down at the moment. Mum is constantly on my mind. Myself, my husband and the kids have just had a 4 day trip away and at times I forgot about mum being in hospital and having MM, but quickly snapped back to reality and felt guilty for having forgotten momentarily!
Mum is doing ok in hospital, we both know she's in the best place. We know it's a long road ahead and just hoping it has a happy ending. I don't tell my mam how I feel about things as I just want to keep her positive and get her better. I find though I'm racing around sorting out kids, work and life in general I'm not really talking to anyone. I keep checking on here as I think thats where I get the most comfort and information. With Xmas almost on us I'm thinking about that and the kids too and juggling hospital visits so mum isn't alone. It's truly a pants situation for my poor mum but we can't dwell on it, just got to get on with it and hope Xmas 2013 is a better more healthy one! I need to put a smile on my face and get on with things I think!
Best wishes to you and your mum. X
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
Sharon,
I've sent you a message to your inbox on your profile page.
Emma.x
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
Oh Sharon I'm so sorry to hear about your dad, what an awful shock for you all. Life is just so cruel. I really hope you and your mum can find strength through the support of each other and your family and friends to help you through this. It sounds like you certainly need some time away from work at the moment, I went to see my GP when mum was 1st diagnosed and ended up having 7 weeks off as my head was just not with it and the thought of work just added to the stress.
I'm glad you parents have been staying with you so you have been able to spend time with your dad and look after him. I'm sure he was so happy to have his family with him.
I sent you an email wishing you and your mum the best for Thursday and just an update on my
Mum. I sent it to your message box on the profile page on here. If you click your photo/name it will take you to your profile and on the right hand side it says messages, click on that and it should be there. I put my email address in so you can keep in touch.
Again I'm so sorry for your loss.
Love Emma. Xx
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
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