[dickbParticipant]

Well, the Germans are famed for their efficiency, their strife for quality and their ability to get things done. Only not today, The Onkologist gave me today as the start of the Chemo, unfortunately he did not check the diary otherwise he would have seen that from tonight it's the weekend. They don't work weekends here. So he has now scheduled me in to start Monday. The silly thing is the nurse did tell him and had scheduled me to start on Monday but was overuled.

I think the trouble is he runs the practice by himself, he has a lot of patients and has possibly too much to do. The attitude here is that the money is spent on medical care and they do not have a lot of administrators unlike the NHS. Whilst this gives superb medical and patient care the admin side does fall down, as it did today.

Apart from that a blood test was done and the result within 15 minutes was that my blood was perfect for the Chemo.

So, here we go again. (almost)

[meganjaneParticipant]

Hi Richard,

How frustrating but at least things should be straight forward when you start on Monday. And as they don't work weekends in Germany you will never have to sit there waiting for treatment on a Saturday 🙂

I hope it goes smoothly on Monday.

Megan

[dickbParticipant]

Cheers Megan, here weekends are treated as sacrosanct. Shops close on Sundays, over Easter everything was closed on Friday, Sunday and Monday. It was great, proper quality time with the family, no chasing your tail in ever decreasing circles, proper time doing what we wanted, not what we had to. Right, rant over, orange box away… We at least got the blood test out of the way and everything is ready for Monday. I have a really good Nurse who speaks fluent English with a Scouse accent. I can have a proper weekend with my wife and daughter (see above rant)and not worry about a thing till next week.

Hope your weekend goes well too.

[jmsmythParticipant]

Hi Richard

Things like that happen here in Norther Ireland. Frank went in on A Thursday and the chemo was to start then and stem transplant on Friday. We were told lies (contradictory explanations) but said chemo would be late and that would mean the transplant would be late on Friday and they couldn't do it as there would be no consultant or staff on duty over the weekend in case of emergency. As we were leaving hospital (for the day – he had to go back at night) we bumped into consultant who said she would see him over the weekend. I said that I thought she was off but was told no she was on duty:-P Frank didn't say anything (which surprised me) but he said he would be in hospital for some weeks and did not want to make any enemies. We got there in the end and the staff were excellent. Hope things go well for you on Monday and you have a brilliant weekend with your wife and daughter

Jean

[dickbParticipant]

So far, here every one has been really good, If an error is made they admit it, usually it's me that makes the error. Couple of weeks back in hospital I was asked by one of the nurses to provide a urine sample over 24 hours, unfortunately I asked for him to speak only German so I could learn, by the time I worked out when the sample was to start, I'd forgotten the rest. Hence next day they were a bit shocked when I hadn't produced anything.

Hope you have a lovely weekend.

[dickbParticipant]

Chemo cancelled again, this time because of liver. My Aspartate Aminotransferase (AST) level apparently should 0-50 and is at nearly 300, my Alanin Aminotransferase was 20, now its 400. The Onkologist thinks it's caused by the red drug in the Chemo, he's done a ultra scan of the liver and that is ok.

Back on Thursday for another check. I don't want it delayed too long because i'm already at 30 days plus since the last Chemo.

[meganjaneParticipant]

Hi Richard,

I hope the delay is a short one and your liver results return to the normal range quickly. It is annoying that the drugs you need to make you well can cause so many other problems, it is good that they are on the ball though to avoid further complications.

Megan

[dickbParticipant]

Ignore my last post concerning being ok for Chemo. Had a bloodtest on 8 April prior to the chemo starting and was told my enzyme levels in the liver were way to high – 20 x higher than normal. So, back into hospital straight away where I stayed until yesterday.

The enzyme levels are still too high and they are now concerned about the MM. They will not restart chemo until they know what's happening with the liver. I was given a liver biopsy, not half as painful as taking a bone sample but still dodgy. Need to go in again for results next week. Their thinking is the liver problem is caused by the 1st chemo or by the Famvir. As for Mannheim, the put me in a special unit called the Patientenhaus in the hospital grounds. If there are any clinicians reading take note:

This is a fantastic concept. It is effectively a hotel on site with its own treatment rooms and nursing staff. It is there for those who need minimal care but cannot go home. Talk about a cost efficient way of treating people, my estimate it would manage up to 120 people without the need to go on a ward. The number of nursing staff was no more than 6 nurses during the day, the doctors came to the Patientenhaus or you went to the required department.

See this link:
http://translate.google.de/translate?hl=en&sl=de&u=http://www.umm.de/2537.0.html&prev=/search%3Fq%3Dpatientenhaus%2Bmannheim%26client%3Dfirefox-a%26hs%3Dx0V%26rls%3Dorg.mozilla:en-GB:official&sa=X&ei=G2dyUamuJMjWtAag3oD4Dw&ved=0CDcQ7gEwAA. Press google translate.

If only there were more places like this.

[dickbParticipant]

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.

[dickbParticipant]

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.

[sanParticipant]

Ahh good luck Richard, i am sure that they will keep a close eye on you, take care and so hope that this works for you San.

[dickbParticipant]

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.

[sanParticipant]

Ahh dear of you, its hard and the drugs may make you feel emotional as well as this illness, but on here you will meet some great folk who have been through it all and their stories are inspiring and practical and may give you heart, take care and just look after you health best wishes to you and your family, San.

[richardlongParticipant]

Richard I have just been started yesterday on PAD from Revlimid as after 5months of treatment, during which time my paratrotein level went up instead of down. Hoping I have better luck with this treatment.
Im grateful at minute that at least they are giving me something. Feel a bit sorry for the consultant when he has to apply for funding for any new treatment at this stage. I'm sure he didnt join the medical profession to deal with finances, but i guess thats just the way it is. Hope you do well on your new treatment

[dickbParticipant]

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.

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