This topic contains 29 replies, has 12 voices, and was last updated by 
dickb 11 years, 3 months ago.
Hi Everyone, read a few messages and have to say it's been a very bonding experience. I'm sure the same topics come up regularly but my mother is in the newly diagnosed stage and it's taken a few months of total confusion before we got the diagnosis.
I think part of the problem is that when the blood tests came back initially and there was just a suspicion it was Cancer the medical people sought to reassure us with statistics and we didn't worry at all. We didn't even realise that the centre my mother was refered to for further tests was a Cancer centre.
As my mother is 85 and a long term sufferer of osteoperosis (oh deal where is spell check) the early symptoms didn't alarm us, she suffered fatigue, bone pain and confusion…all put down to her increasing age. My brother kept saying he thought mum was getting Altziemers but I have some experience of Altziemers and didn't agree, as it turned out she had very high levels of calcium in her blood.
Suddenly a couple of months ago mum went off her feet and needed a wheelchair, she could weight bear but was in severe pain. We had an appointment with the haemeotologist and he admitted her from his clinic and she stayed in hospital for 10 day. He thought she may have suffered a spinal compression, it turned out not to be the case (she was badly impacted due to the high levels of calcium in her blood and that was part of it although bone pain persists her mobility has increased) and then a series of confusing incidents occured, firstly when my mum was admitted to the ward the admissions doctor asked her how long she had had myeloma and none of us had heard of myeloma. We were told she had very high levels of calcium in her blood and via the internet I found out more information and read up on myeloma but the medical team were hovering between treating her as if she had myeloma but not wishing to confirm it because she hadn't had a bone biopsy and it was further confusing because her bones showed no signs of damage from the myeloma just the arthritis so we didn't know if she had cancer or just arthritis.
Eventually she had the bone biopsy and the diagnosis of MM was confirmed and they talked about treatment, in the clinic we were told mums kidney function was okay and they booked her in for Chemo, Thalidamide and Steroid treatment. We arrived for the treatment and were told by the specialist nurse that mums kidney function was impaired and she wasn't suitable for Chemo. Mum felt like she'd been thrown a lifeline when she heard about the treatment and remission but she felt like the lifeline was taken away when they decided against Chemo.
Do you know something, people in this country commit the most appalling of crimes and we think it is inhumane for them to get the death penalty and yet we have the nicest, sweetest people on earth given Cancer diagnosis and for some, those who are late stage or have very malignant cases or who are very frail it must be like staring down the barrel of a gun. I don't want to be negative, I don't think this is a negative forum and I find many peoples personal stories both heartbreaking and inspirational at the same time. However, as the most effective Cancer fighting drug has been withdrawn and as my brother and I (who are both working, albeit my brother part time) are absolutely baffled as to how we are supposed to care for my mother who is adamant she doesn't want to go into a nursing home. does anyone have any advise about what is likely to happen progression wise, if there is a way of contacting me privately that would be welcome. Every time I find myself talking to a professional I have all these questions in my head that I don't want my poor mum to hear the answers to. I am sure this happens with carers a lot, we need to make plans for practical reasons but we want our loved ones to remain as positive as possible, advise about what to expect would be very helpful. Thanks for reading.
Hi Linda
I have sent you a personal reply,if you look at your profile by clicking on the blank space werea picture should be,it brings up your details and you can send a e mail on there.
Please get in touch with Ellen or Maggi,free number talk explain any results you have,to me it just seems they are writing your mother off,I think the eldest person we know about on here is 80 something,
Confusion is caused by calcium in the kidneys,it is one of the first signs,my own husband after months and months of going to doctors,was taken in on his first consultation with AKF plus hypercalcma ,went in,in a wheelchair,walked out 48 hrs later.
Eve
Hi – I was admitted to hospital with 5% kidney function am currently on velcade and dex and my kidney function is now only at 22-23%. I was given velcade as frontline treatment (a very good drug) because of my poor kidneys as velcade does not impact the kidneys and goes through the liver instead. Velcade is normally 2nd line treatment but each time i get it they quote a "reasoning" from the Lancet journal as being most suitable for MM with kidney issues (summarising somewhat) and the drug is authorised. Velcade appears to be not as harsh for patients and I think it states in some literature on this site that it can be used for elderly patients who would not be suitable for stem cell transplant. Rebecca
Thankyou so much for your reply and PM…not sure if I've figured out how to PM back yet I've just had a quick glance but I've finished a 12 hour night shift at a secure hospital and I'm heading South to collect my youngest daughter from Uni. My mum is not well at all, first signs were last year with shingles but that's hindsight now. I'm not sure how she would cope with Chemo but I know she wanted to try. She does have pain though, not sure why her bones are not showing signs of damage because she was extremely ill with hypercalcemia. You look on here and see people in their 50's admitted because their bones are breaking and they don't know why, it's an unpredictable illness.
Thankyou for sharing your information with me. I am amazed you have done so well with 5% of your kidneys working and I'm so pleased that they are improving. I'll speak to the consultant about your medication.
Hi,
Just to say that my Mum is 84 and has had three rounds of treatment for myeloma since 2007 including CDT, Velcade and now Revlimid. Her kidney function has always been fine, but I wasn't aware a poor kidney function meant you couldn't have any treatment, as the treatment can help improve kidney function!
As Eve says it is worth ringing the helpline, it sounds like you need to have a discussion with her consultant again to see what the options are, as a specialist nurse would not normally be deciding what treatment is best, they normally just help to manage whatever has been prescribed by the consultant. It also sounds like your Mum could benefit from the bone strengthening treatment that a lot of MM sufferers have which is also used for osteoporosis.
Keep in touch and let us know how things go.
Jill
Hi Lindy,
First of all I would like to say I wish you were not here… but you are, so let's make the most of it.:-)
Secondly, thanks for the laugh… it was a natural lagh out loud chortle, which doesn't happen to me that often.
[quote][b](oh deal where is spell check)[/b] [/quote] 😀
Thirdly your post is an excellent example of explanation. I read through and understood exactly what you were trying to achieve: 🙂
1. The explanation of your Mum?s condition.
2. The reasons and details of the confusion over prognosis and the lack of communication between the medics, the patient and the patient?s family.
3. The continuing confusion over an available treatment (CDT), its withdrawal and what happens next.
I particularly like your statement;
[quote]Do you know something; people in this country commit the most appalling of crimes and we think it is inhumane for them to get the death penalty and yet we have the nicest, sweetest people on earth given Cancer diagnosis and for some, those who are late stage or have very malignant cases or who are very frail, it must be like staring down the barrel of a gun.[/quote]
For me it seems that you have wandered into the world of Multiple Myeloma (MM) and immediately grasped the fundamentals of our world. Well we can help you move forward by demystifying all the processes, procedures and treatments. There are people who are just a step or two ahead of you and there are others on the brink of last orders… all who will be willing to share their experiences and knowledge. 🙂
Welcome Lindy, ask away and I hope we can move you forward quickly, smoothly and gently. 😎
Dai.
Thanks for your reply, wow your mum is managing MM well all things considered she's done well to go through all the Chemo. Just wanted to say that whilst it was the Specialist Nurse who first told us she didn't think my mum was well enough to cope with Chemo she did go and speak to the Consultant who then changed her prescription by omitting Chemo and lowering the dose of Thalidamide so it wasn't down to her sole decision but the Consultant definately acted on her recommendation, my mum didn't see him that day and we were up in the treatment area waiting for the changed prescription to come through before my mum could be given anything.
Glad I gave you a giggle Dai, I'm such a muppet at times, spelling is not my forte.
I've worked in adult mental health for about 15 years now and EMI (elderly) for a few years before that. I deal with a lot of emotion but sometimes it's hard for me to be emotional and one of the reasons I'm not more ready to pick up the telephone and talk to people is because I don't want to cry to strangers. My mum was booked for Chemo last week and didn't get it. I visited her today after going to clear out my youngest daughters room at University and she told me that on Wednesday she has an appointment to visit a Hospice. I just feel someone should be explaining things a bit better.
Hi Linda
If you will not speak to Ellen or Maggi because you are worried about getting upset send an e mail,might take a few days to reply,but they will give you facts.
They monitor what is on here so you might get a reply!!!
I think you should be asking questions,??
There is a daughter on here who,s mother is 86 she has Myeloma plus breast cancer,lives alone and is receiving treatment,to me there is something fundamentally wrong,when they are not even trying to treat your mum. Eve
I will send an email and I'm writing a note to the District Nurse because I keep missing her, she'll pick that up today. Obviously I need answers to some questions but I'm not giving up on the health professionals just yet, I do think that sometimes these decisions are made in the very best of intentions for the good of the individual patient. It's just that we've gone from all the reassurances that it's probably nothing serious, to all the reassurances about what can be done to prolong life, to an end of life care pathway without any proper explainations along the way and this needs to be addressed.
Hi Linda
Eve is right. Email Eelen or Maggie. I couldn't talk to them either as I know I would get upset and not remember what they tell me. They are very good and come back with lots of info and advice and having reply in writing I can Re read until I fully understand
Best wishes
Jean
I never did get round to emailing anyone, what a whirlwind this has been for our family. My mother has been in hospital for 4 weeks now and from being diagnosed with 'just' myeloma about 6 weeks ago, she now has a heart murmur, arterial fibrilation, renal problems, pnuemonea, a UTI, mild psychosis, slurred speech she can no longer walk and is doubley incontinant. She had a routine blood test and the hospital rang us and told us to get her into hospital immediately. Five days later after having to ask for information in writing we were given the news that her kidneys were blocked and she had a very aggressive stage III myeloma. The hospital has been great with regards to her treatment, definately not written her off but the communication isn't great. The good news is that she is fed up but otherwise remarkably comfortable, she even had a big smile for me after we'd been called in because she developed breathing difficulties and they moved heaven and earth to stabilised her…so no complaints about how mum is being treated, just wish they'd been straight with my brother and I so we could prepare better for what is happening.
Update on my mum. She spent 6 weeks in hospital and then inexplicably they discharged her to a private hospital on Thursday afternoon despite her wanting to go home, it is now the early hours of Monday morning and it is clear that my mum is dying, she is confused and barely communicating and stopped eating today, she sleeps most of the time and is peaceful and comfortable, she smiles when she realises my brother and I are there but most of the time she is disengaged and preparing for her journey….we are still left to figure out things for ourselves, only last week in a desperate bid for more information my brother was told by a haemotologist that they were 'pleased' with her. They don't seem to treat patients as a whole, different departments seem responsible for their own 'bit', the haemotologist was pleased because they could look up her bloods on a computer and see an improvement in the myeloma but the computer screen doesn't show her kidney malfunction and her body filling up with fluid causing havoc with her pulminory system. This is such an individual disease. I heard that up to 25% of myeloma patients die within a few months of diagnosis, I feel sure they must be people like my mum who are either very elderly or have pre existing conditions or both. The myeloma responded very, very well to thalidamide and I think that offers a lot of hope for other people, unfortunately my mums cancer was too advanced and too aggressive before it was discovered and the damage to her kidneys means she cannot go on. I just wish there had been a way of recognising there was something wrong other than old age, being tired and having aching bones is not unusual in someone who is 85 and has suffered from joint pain for 30 years. A major clue was shingles last year…if only we had known it WAS a clue. I wish everyone well with their individual battles and journeys, hoping they are able to fight harder and their journeys are MUCH longer. I hope more information about this disease becomes available to the wider public so that people can be more on their guard as early symptoms present themselves.
I am sorry to hear about your Mother. If as you say she is preparing for her journey then is there anything you can do, apart from supporting her? I don't believe that things will change very much for elderly MM sufferers because as you pointed out, at your mother's age she already had tiredness and aching bones. MM can hide behind so many things that can be put down to age and whilst doctor's try their best, they cannot know every sympton or group of symptons for every illness. As someone said to me, the average GP may only come across MM once in their career. Our hope is that as more people are diagnosed and treated, so the database of information increases and so more accurate diagnosis can be carried out in the future. Another benefit that is coming along now although a warped one is that MM is on the increase while other cancers are decreasing, this hopefully will push MM up the priority list and increase the available funding.
All the best to you and your mother.
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