This topic contains 15 replies, has 8 voices, and was last updated by 
ilovemymum 12 years, 5 months ago.
Hi Everyone
I have been reading on this discussion forum for a couple of weeks now and have now decided to join. My mum was diagnosed with MM on the 29th May this year. After complaining (not loud enough really bless her) of back and rib pain and repeated visits to the drs (at 71 I think they thought it was wear and tear)she was given pain relief and advised the rib pain was muscular.After a few more visits and a clear xray my wonderful dad decided enough was enough and took her to A and E! Good job really, she was anaemic and suffering from renal failure etc etc and this led to the diagnosis after a week in hospital and bone marrow biopsy ct scan etc. She was started on subcut (I am learning the lingo!) Velcade and has just had her 3rd injection the 4th will be next week then a week off. She is being so brave and so is my dad, we are all being positive but we have our moments x I would like to thank you all already as its been really helpful being able to read all your posts you are all so brave just like my lovely mum x Mum hasn't had her appointment with the Haematology people yet but its soon and I gather they will go over everything then and explain how long the treatment is etc. Hope to hear from some of you soon. Rachael x
Rachael
Sorry that you have joined us but you are very welcome. You have come to the best place for support and information. I am new to the treatment aspect of this awful disease as my husband has just started first cycle of CDT, but if you have questions or worries there will be someone that can help.
I hope your mum does well on the treatment.
Love Jean x
Hi Rachael
Its such a shock to the system, In many way,s your just glad you no what it is,we have all been there,if you keep reading the back post I am sure you will find lots of answers to you questions.
Only advice I can give you write you questions down before you see consultant,They see this thing every day and are so used to it,they forget there are real people sitting in front of them.
Good luck keep in touch Eve
Hi Rachael
Im sorry you have had to join the site but a very big welcome to you. Its been a godsend to me since my lovely Mum was diagnosed November 2011 aged 57.
Im sure you will find lots of information on here as I have. You can also ring the nurse (as I have done a few times) if you have concerns/questions, and someone always "pops" into the forum to help when you post.
When my Mum was diagnosed it felt like the end of the world to me, shes had 5 cycles of RCD and is now waiting for SCT. I try to go to all hospital appointments with her and my Dad and I sit in the corner with my jotter writing everything down as we found early on that "it goes in one ear and out the other".
Keep in touch
Love Alison xx
Morning, thank you all for your welcome to the group x its so lovely to be able to come on here. Thanks for your advice it really helps. Had to take my mum to hospital shortly after writing this post last night as she had developed a temperature, they have kept her in and given her some more anti sickness drugs etc. I have to say the Hospital are being fabulous and so thorough, the Haemotology doctor was there in A and E waiting and she has been taken up to the Haemotology ward as her kidney function was a bit off again. Now taking my dad back over this morning and hopefully mum will be feeling a little better. Have to take a step back and understand that its the drugs that make her feel so ill and not just this awful illness.
Chat soon love Rachael x x x P.S I do hope you are all okay today x
Hi Rachael,
Welcome to the forum:-) My partner Colin was diagnosed at 55(up to now realised I have aged him a year! Lol). it was a real bolt out of the blue. He has had 7 cycles of treatment crd (cyclophosmahide, revlimid and dexamethasone) and thankfully up to now all worked well. He had one bone lesion in his back which was treated with radiotherapy. For your info if it helps, Colin has had several visits to hospital, either with temperature or general feeling of being unwell. Each time the hospital have been excellent (we live in Gloucestershire ). We were advised to get a digital thermometer so that we could keep an eye on the temperatures. I won't say we've got used to hospital visits but it helps when you understand a bit more about what is going on. We have read lots around this subject, never having heard of the condition before. Thoroughly recommend this site as the most reliable (others were very scary so stay well away from those). Any questions please ask!
Good luck to your mum and best wishes
Vicki and Colin x
Hi Rachael
A warm welcome to the site, and like us all am sorry you had to be here. I wish you and you Mum good luck in your Mum's road to remission.
I hope your Mum is feeling better today and the temp is sorted.
Keep strong.
Tom "Onwards and Upwards" xx
Hi Rachael,
Welcome to the forum. First things first, what is your Mum's name and where is she being treated? (Not necessary information, I'm just being nosey).;-)
I have had several incarcerations with infections and the like over the last three years (my wife tells me it is 5 times, so there you are) so they do happen and the medics like to be 'rather safe than sorry'… and quite right too. The source of the infection is rarely traced, despite cultures being taken etc., – they usually give you a few doses of a magic anti-biotic which usually gets the infection under control within 24/48 hours… once your temperature is down and stays down for 24 hours they will let her home with a bucket full of pills.
I wish your Mum well with her frontline treatment and I look forward to getting to know her through you over time.:-)
Regards
Dai.
Morning All, Thank you so much for all your responses x my mum came home late last night (she insisted) after antibiotics and fluids and they had got her temperature down just as you said! They ended up giving her a blood transfusion as she is anaemic.She was very upset this morning think it may have hit home a bit now, I have tried to convince her that it will get better she feels so sick all the time and my poor dad keeps trying to get her to eat as she is just picking at food, my dad worried that taking all the tablets on not a lot of food isn't helping. She has a renal appointment this afternoon and another velcade on friday but no clinic appointment until the 3rd July.Dai,My mums name is Janice and she is being treated at addenbrookes hospital in Cambridge. Thanks Guys was having a moment earlier and just reading your messages makes it a little better x x x x 🙂
Hi Rachael
Am pleased your Mum Janice is home now (but keep an eye on her temp).
Am sure it will be the meds your Mum is having that is making her loss her appetite, I was same after my SCT and it was hard to face a plate full so my Young Bride (Elaine) gave me a smaller plate with smaller portions so as not to over face me with food.
Love
Tom "Onwards and Upwards" xxx
Hi Rachael
Lots and lots of fluid,any thing that goes down,Jo use to take the tablets in yoghurt to get them down,the whole illness is a roller coaster ride,with highs and lows,
My advice is get your mum on here and she will see how quickly people respond,and it will help her,because this whole thing can make you very depressed.I hope they sent your mum out with a course of antibiotics.Eve
Morning all of you lovely people x Eve, they did put my mum on a course of antibiotics and sent her home with them x she had a renal appointment yesterday and although they confirmed the myeloma is in her kidneys they are pleased because her kidney function is no worse than when she was first diagnosed (hopefully it means the treatment is having an effect as I would have thought they would get worse if it wasn't). My mum is much better today very cheerful and bright. My mum doesn't do "online" but I have been telling her about all you wonderful people and the fab advice and reassurance you give. Does anyone else on here receive treatment in Cambridge I'm wondering?? Also if it helps anyone on here starting velcade just wanted to say my mum was suffering with a really bad dry mouth and it has suddenly gone today so if anyone else is suffering with that it does pass.Anyway hope you all have a lovely day and are enjoying the sunshine 😎
Glad to hear mum is feeling better,
When Slim was first taken in to hospital it was with AKF and hypo-calcuimia(spelling) ,within 48 hrs the difference was amazing,
The Kidneys should clear but it,s sensible to make sure your mums fluids is high to help clear any chemo.
As for sunshine its no fun for Slim long sleeves hat and factor 50:-( .is the most important with chemo,at least all the clothes hide the weight he has lost lol:-)
Wish your mum the best from me Eve
Hi Rachael,
Glad your mum has made some progress and she is feeling a little brighter. Whilst dealing with this condition as a family member doesn't get much easier, for me anyway, it always helps when you can see the patient getting a bit brighter! Don't worry about having 'moments', I have them a lot and go from being really positive to mrs doom and gloom, on the quiet. Still glad your mum is feeling a bit better and hope the treatment goes well.
Vicki and Colin x
Hi Rachael,
Glad to hear your Mum is doing better, it sounds like she is having a similar treatment to my Mum who is 83 and was diagnised with MM in 2007. Mum is having subcut Velcade, has had three cycles of one injection a week over four weeks with one more cycle to go. Just to say that even after one cycle there had been a very good effect on reducing her MM levels so hopefully your Mum will find the same. Mum was a bit low about having to have more treatment at first but we are into the swing of it now, she lives alone so I take her to the hospital each week, the worst part is waiting around there! The main aim is to make sure the symptoms from MM are reduced (pain, anaemia etc) but without making them feel too rough from the medication I think. What other drugs does your Mum have? If she has dexamethasone as well this can make your moods very changeable. Lots of fluid helps.
Hope things continue to go well,
Jill
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