Just a point about MRI /MRT scans. We attended the 10th anniversary do of the local self help group and they invited some of the top medics to attend and give lectures. One of the things that came out is that an MRT is more accurate at determining the level and positions of MM in the body. My German is a bit poor but the gist was that with MRT they can even identify it spreading into other bones like shins and forearms. The technology is amazing but the images they displayed showed little areas of light in the bones that they believed was MM. This sort of stuff blows away the present view that MM is only present in the larger bones.
The downside is that MRI/T is so expensive that they are unwilling to use it as a replacement for BMB here, even though it gives a far more accurate picture of MM in the body.
Hi Ang,
Really good news then. The high temp I think everyone gets but certainly combined with Flu would have been scary for anyone. Let’s hope everything continues to improve. I’m afraid I’ve had a few days of Diarrhea and sickness which the MM nurses put down to either an infection or the stomach being damaged by the Mephalan. The medics don’t seem to concerned at the moment but quality of life at the moment is really impaired. I think we must all keep our guard up. I think with Graham it’s just a case of taking one day at a time and keeping an eye on hygiene, infections etc. Be wary of children because we just don’t know what they carry – mmm I could get the part of the Child Catcher in Chitty Chitty Bang Bang with that attitude!
Hi Rebecca,
I can’t be doing too badly then because I’ve taken the bike out a few times without too much trouble. I walk our daughter to school daily and back again – although it’s not far and I try to do some of the housework. We are moving house in March so that will be test of stamina I’m sure. Unfortunately our daughter is coming back from school with normal school type infections – a cough, cold and we are sure with slap cheek syndrome. She can’t help it, it’s just normal school life but it certainly makes it a little bit more testing.
Hi Eve,
One thing I’ve learnt from reading your posts is that you are the one to be obeyed, you are the oracle, the fountain of all knowledge. So I will stop worrying and hang in there for the long term.
Hi Kay,
Saying don’t worry is a bit like King Canute telling the waves to go back – it’s not going to happen. However you are here now amongst a wealth of knowledge. I think the important thing is not to bottle it up, talk to people, don’t be by yourself about it. The more that know, the more help you will get. The worrying about every ache, pain or sneeze is normal and we’ve all done it but as time goes by and you get used to your situation you will learn more about what to watch out for and what to ignore. As everyone here says, listen to your body. See if you can follow Megan’s advice about counselling, it probably will help you cope better.
Certainly a positive for us following behind you to aspire to.
Hi Wendy,
Don’t panic, you are going through the same emotions as virtually everyone else on this website has had. The good news is that it’s been spotted so it means they can treat it sooner. Have you read up on it yet, if not do so but be wary of everything you read on the internet. As you’ve probably been told, MM is such an individual desease for everyone, everyone is different. Do you have the results of the biopsy yet? What about X rays and kidneys? You need to drink a lot if they haven’t already told you and I suggest you speak to one of the Myeloma nurses if you haven’t already. They will help you to understand your illness and what it means. At least you are in a very good place on the forum and whatever you go through, there is a very good chance that someone on here has experienced it already.
Richard
Had a bit of a set back this weekend – nothing major so far. Our daughter has had a cold /cough for the last week and up until Friday I managed. Then a cough started , still there Saturday but no raised temperature. Yesterday my voice became hoarse so my wife was concerned so she phoned the hospital. So far they believe it’s viral, I need to monitor today and if it gets worse or I get a raised temperature then the hospital believe it could turn bacterial in which case it’s straight back for antibiotics. They also say I must drink more then the required minimum for MM patients as this will help flush any virus out. So here’s watching and waiting. Wednesday I’m back in for a weekly check anyway so I’ll be happy if I manage until then. As I said before, if it wasn’t for my wife, I probably wouldn’t be here, Don’t underestimate the poweres of perception of the carer.
Read the last couple of posts, Andy has hit the nail on the head. Drugs are available if you are willing to pay and take the risk – after all you can get any drug that’s available in another country if you are willing to pay.
Mark, you’ve raised a relevant point but I would suggest that the party your MP belongs to may affect his response. I would also suggest the constant meddling the politicians have done with the NHS have greatly hindered care rather than aided it. Ultimately, back to the original point about cost of drugs and profit, we live in a capitalist society. Our whole ethos is related to profit and personal gain for the individual. History has shown that Marxist communism unfortunately doesn’t work no matter how noble the cause is.
Good news Scott, It’s not much fun but as others say it’s doable. Hope it goes well,
Richard
I think there are two issues here, 1st the drug companies do have an almost monopoly on drug pricing and do make big profits for shareholders. What you have to remember is that a lot of the big institutional shareholders are pension funds and insurance companies. The pharmaceuticals pump a lot of money into peoples pension funds.
Next not everything that comes out of the US is good. They have had a number of scandles over the years where drugs where not tested properly or the tests were controlled by a party with a vested interest. Whilst they have tightened things up I still don’t believe everything they say. I think you are far better off having an independent body such as NICE deciding – even if their decision making is skewered by cost. Don’t forget, care in the UK is free at source, care in the US is insurance based – no adequate insurance – no treatment.
And another thing, there seems to be a mass rush to go on trials. Trials don’t guarentee anything, they may not actually work which is why they have the trial – to check effectiveness. If something has approval then it has been through trials, is known to be effective as a firstline treatment and if it doesn’t work then there is the likes of Velcade as a second line treatment.
Right, just come back from the hospital, they did blood and they show my white blood cell count is up to 3.2, just another 0.8 to go and I’m in the normal range 🙂 Doctor was very happy, I can relax my diet a bit but still have to continue with mouth wash and a drug to reduce mouth infection – not the dreaded orange ampho stuff fortunately. Although in Germany they do BMB at 28 days post transplant, she agreed with me that it was too early and if she thinks I need it then I will have one at 100 days. When I told her it waqs 100 days in the UK she said they do things properly. She’s going to rely on blood results initially. So I’m a bit of a happy bunny.
Richard
Hi there, sorry you’ve had to join us but at least you are better informed than many and gone through the trauma of a cancer diagnosis before. My wife tends to read and research everything whereas I don’t worry about things I can’t change. She thinks I’m just a bimbler but I like to think life is too short – especially now – to worry about everything.
I hope you find us helpful, there are a lot of ‘experts’ on the site who would rather not be and a lot who have done well post SCT so please keep us informed and join in.
Richard
That’s good news Ann, I’m surprised they will let him out, the side effects from the Mephalan are not nice. All the best for the next few weeks.
Richard
Hi Ang, Carol.
Glad to hear you made good progress Carol. I had the same and still do with the dripping nose. My wife won’t let me out without a face mask and that just exasperates the problem. Have to throw away the mask after a few minutes because it’s sodden. It was a couple of days at home before the runny nose improved but I still have some. It’s the tiredness now. I have to have a daily snooze and am in bed before 9:00 pm. As for infusions, I only needed the platelets and I only needed one neutropen shot but everything else was as you.
Ang, I had a gym bike in the room which they encouraged me to use and a lung pump to help keep my lungs fit. If they do the same for Graham he needs to use them. It is going to be tough for him, the isolation was probably the worst for me but time will go. I do hope it goes well for him.
Next stage for me is full bloods, urine and BMB at 28 days – they don’t do 100 days here. I can’t face the BMB yet so I will ask them to defer until 100 days. They are also talking about a tandem transplant if I dont have a very near full remission but I have to mentally prepare myself for that if it happens. On a brighter not I’m walking my daughter to school today so energy levels are not too bad.
Good luck both of you.
Richard
