Hello Anthony, sorry you've had to join us and we've all asked the questions about how and why but at least you are not alone. I think the best thing is not to get too engrossed with the data. As everyone says, the MM affects everyone differently and is unique to each individual. An example is that my PP level has been upto 110 and yet I have not suffered from broken bones nor kidney problems. My resistance to general viruses is low though – major bout of Pneumonia suffered and now Liver Enzyme issues.
So, don't panic too much, you will have lots of questions, lots of anxieties but there is a lot of help and support out there. As a point of interest I have found the Myeloma nurses on this website helpful – we live in Germany and my treatment is out here so I just needed to check something that I may have lost in translation.
Anyway, it can be hard, but you are not alone.
What a sad situation to be in for the consultant let alone the patient, I would of thought the majority of people go into the medical profession because of a desire to care and look after others. It's a mad system that then makes these same people question the level of care they should give. Who can benefit from it? Resources are finite but surely giving he right care at the start rather then going down a specific route that will not suit every individual may put a greater strain on these resources. This is especially so when research shows that MM is in the increase when other cancers are decreasing.
Hope the PAD goes well, I was on PAD but then put on Revlimid despite it being known to stress the liver. All suspended now – see my new post in 'treatments'.
The PAD made me very ill for a week after but compared to the Revlimid it was the lesser evil I think. As for funding, the attitude here is so different because the funding is different. They put quality of treatment first and cost second. Not enough managers here draining the finances and cocking the system up you see.
Sound advice from Eve. Fortunately the doctors here give me a print out of all the blood tests, they will give me a PDF file once the treatments done and I do keep everything in a folder at home. It helps to understand the illness and what is happening to me.
Hi Eve,
As I said, here in Germany it is the norm for the doctors to give full medical examinations including blood and urine tests. They are paid by the Insurance companies to do so because they understand that it is actually cheaper for them to find problems early. The problem is the UK mindset. Everything is about taking a chance and not spending money. We see it in late infrastructure projects, short term business investment strategies, very poor planning at all levels of government. It's don't spend unless you really have too and then only the absolute minimum. It doesn't matter if it doesn't last that long because it will be someone else's problem. The NHS is just as bad because it's managers come from the same pool. None of them seem to understand the benefits of long term planning and if they do, then they seem to be made to follow the short term route. After all, we hear about annual budgets and 5 year plans but here everything works on a minimum of 10 year planning. That's why they have far better value for money on their projects and better actual health care. It's not all good. The administartion here is dire at times but losing files is a small price to pay against losing a patient.
Having gained limited knowledge of the way things work here in Germany and comparing it to the UK, the big difference is in the thinking. Because here health care is insurance based the thinking is very much prevention rather than cure. To this end the insurance companies are happy to pay for comprehensive health examinations because they believe in picking up problems early enough before they become expensive. The attitude with the NHS seems to be not to spend money unless absolutely necessary – usually when things have got far worse and by definition are far more expensive to treat.
My own experience bears this out. I knew last September something was wrong because I kept suffering from unusual infections. I asked my GP for a full medical examination and was told not to worry, I'm still young. Within 4 weeks of being in Germany I was offered a full medical including blood tests, urine, Stool analysis and ultra sound. This was paid for by the insurance company and through this my MM was picked up.
There has to be a fundemental change in the thinking of the NHS managers before things improve and then costs may start to reduce.
I am really sorry to hear about your brother's death and offer my condolences. It is a truly awful illness because you just don't know what its going to throw up next. There are lots of very inspiring people on this website who will give you help and support but would suggest you keep pushing the doctors for an answer. I know it won't bring him back but it might just help with giving closure.
Although I didn't know Keith, reading the posts here tells me he was well liked and respected. I hope his funeral goes well and is well attended. It's now time to support the family.
Thanks for the support San, so far things are ok with the Revlimid. Shocked at the cost of it though, the wife did some research and it's about 7000 Euros for 1 months supply. Thats just the drug and not the Dexy or the medical care. The Dexy has given me zits so I feel like a teenage again – No job, Mentally insecure, no one undertands me and with zits. Can't be bad.
Right, been to hospital this morning and the liver enzyme levels are going up again. The paraproteins are on the increase so the doctor has decided to go ahead with Revlimid-Dexy Chemo starting tomorrow. The Revlimid she tells me can also be dangerous with raised enzyme levels. She didn't look too happy but believes it's worth the risk – I'll find out soon enough. She is starting me on 15mg of Revlimid and 40mg of Dexy over the 21 day cycle. It's back in again next Wednesday after the first week for more blood tests. Just hope it works otherwise I will begin to feel a bit stuffed.
Now, a month on, it looks like I may restart Chemo. They are changing me from PAD to Revlimid and Dexy. They are absolutely certain the PAD caused the extremely high enzyme levels in the liver (Alaninaminotransfer should be below 50, went up to 1100 at one stage). Paraproteins have stayed relatively stable.
This will hopefully begin next week at the local Onkologist, so here goes. I dare not worry about the side effects for now. Just want to get going.
The French (known in Europe for being hypochondriacs) are very much into pill boxes for 7 days dosage and the Germans like them as well, I use a spreadsheet with tick boxes, I only tick when I have actually pulled out the ones to be taken. My wife wants me to have a pill box for holidays and short breaks.
Thanks for the thought. Off to the hospital this Thursday for full blood tests. If all goes well I will start again soon thereafter. As a stop gap I have to take the Dexy for the next 4 days. We wait and see.
Richard
Do they make them for 6'+ blokes?
Be good to wear in the coffin, may surprise a few people.
Just came across this thread because it had started and lay dormant before I had joined the site. There are elephants around, big ones as well but I think what has helped with MM is that I've always had a bit of a big mouth and prefer to have things in the open. Friends and work colleagues both know that I have suffered two bouts of depression in the past (now that is an Elephant in the room).
I'm also a bit of a sod at times because I do things deliberately either to embaress or judge reactions. Some of this comes from 9 years in the RAF. Through luck I missed going to the Falklands and left just a few months before the start of the first Gulf war, I did know some good people who died in accidents. Training for war including trying to survive major injury also helps make you think about your own mortality and future survival. The biggest thing you gain which helps now is gallows humour and pragmatism. The humour helps with the managing, the pragmatism gives a matter of fact attitude. Yesterday I spoke to another parent at our daughter's Kita (German nursery). In a matter of fact way I told him the basic facts – it's terminal, it's in me having a wail of a time. Sufferers look fine, normal but inside it's pretty crappy. As he said, other people's problems become insignificant in comparison.
So as to the Elephant, our attitude is to go up to it and say to everyone else in the room "Look whats here". If they don't like it, they know where the door is. Those that stay I believe will be with us till the end and with my wife afterwards.
