[dickbParticipant]

Hi Jeff,

I don’t think the LRI is isolated, it often takes me upto 2 hours to wait to see my doctor at Mannheim. I don’t know what they do at the LRI but here I arrive, within 30 minutes I have blood taken and they wait for the results. If it’s just white cells, platelets and haemoglobin, that’s done in a couple of minutes but normally they do a full check to cover liver enzymes, Kidneys, protein levels. The report they give me comes back with about 35 values on it.

[dickbParticipant]

Hi Dusk,

I read your original thread and please don’t think people are gunning for you. Reading through the posts I would suggest that people were a little unsure as to what you were saying and when some have had very stresfull times either as a carer or as a sufferer then they possibly felt you were being a bit too negative. Anyway, that is in the past, please keep posting because I am sure you can contribute to the Forum.

Jeff, I can’t pass comment on UK hospitals because I live and am being treated in Germany. There are similiarities in that you have the right to a second opinion and that some places are definately better than others. A note of warning though. There are 2 centres of excellence near me. One is the University clinic, Mannheim the other is in Heidleberg. Heidleberg has the better reputation but because of this everyone wanted treating there. They are now overloaded with patients and consequently those in our self help group have said that the quality of care has gone down. So be careful of reputations, they are effectively out of date!

Richard

[dickbParticipant]

Yahoo! Probably the best news you’ve had in ages. Hope you keep it up for a long while yet. Will they do a BMB to confirm?

[dickbParticipant]

I don’t think the medics base all decisions on cost even though the bean counters will want her consultant to. If she is responding well to chemo and the consultant believes she is going to have a full or almost full remission then SCT might not be necessary. Only your mother’s consultant will be able to make that decision. The other point is that MM is different for everyone and if their concerned your mother might not be able to tolerate the very harsh chemo before SCT and then the SCT itself then that will affect their decision. They ultimately look at the risks involved against projected improvement in quality of life. It’s not easy for the medics because it’s got to be akin to looking into a crystal ball. Hope that helps.

[dickbParticipant]

Steph’s make fantastic wives and spotters. My wife is also called Stef and she always spots things before I do and knows what’s going on before most others. I’d probably be dead without her. So here’s to the Steph/f’s out there.

s

[dickbParticipant]

OK, So I went to the local Chemist here in Germany and asked for a face mask (Gesicht Maske). The first chemist said they didn’t have any and suggested I tried the German equivalent of Boots. They had none so I went to another Chemist and they had loads so I bought 10 pleased with myself. This was in October prior to a trip to Paris. Now I’m back from SCT I wanted to walk my daughter to school this morning, got ready got the face mask which says Face Mask on the front and opened it. Yes, I got the face cream! After my wife got over the shock she found it really amusing. Anyway I should have asked for Mund Schutz – mouth protection.

As for the face cream, I’m a 50 year old bloke that does not buy cosmetics, creams or any other form of skin product so how am I supposed to know that a face mask is gunk? So there you go, lets just say ‘lost in translation’

[dickbParticipant]

Having originally come from Leicester it does not surprise me that the hospital has invested heavily. The whole city over the last 20 years has invested heavily in infrastructure and culture. I remember as a teenager / 20 something, we always went to Nottingham for a night out but now, knowing the violence and trouble that regularly happens at the weekends, I’m happier in Leicester. It’s only about 10 years ago that Nottingham had a major gun crime problem. Anyway I digress. Anyone moving back to the Uk from the continent with MM would be hard pushed to find a better place – not just for medical care but also as a diversely cultural vibrant city.

LCFC are also top of the chanpionship as well 🙂

[dickbParticipant]

Thanks for that Tony, will keep you posted.

Richard

[dickbParticipant]

Hi Ang, we know about stress for carers, before I went in my wife didn’t sleep properly, was verytired, worried sick and had a lot to do. Now I’m back, she slept well last night – can’t think why because she had to share the bed! Anyway I believe what is needed is as much help for the carers as for the sufferers because their stress levels are far higher, especially if they have a long way to go to retirement and a young family.

[dickbParticipant]

Hi Tom, looked at your bloods, now in my amateur status the HB is heamoglobin – red blood cell count. PLTS is platelets, they have to be in a certain range to ensure your blood is not too thin – doesn’t congeal or too thick – can’t be pumped round by the heart. The important one is the Neuts – white blood cells I believe average is about 4, below two and your in dangerous territory – no immunity, range goes up to 10 or 11. I believe when it’s that high then it’s Leukemia – don’t quote me, I’m not a medic.

Richard

[dickbParticipant]

Me being a cynic I see IT specialists as the modern Alchemists – They promise Gold and never deliver. Cost an arm and a leg as well. ha ha.

[dickbParticipant]

Dear San, I am so sorry to hear about your loss, during the last few weeks in Hospital, I had no internet access. I can’t add any more to what’s been said but I do hope you are coping OK. While her struggle is over there are plenty here who are fighting on and some may need a bit of your mother’s determination. I am sure she was ready to go in her own mind and now it is for you to remember. I hope you keep in touch with the forum still. All the best for the weeks ahead.

Richard

[dickbParticipant]

Hi everyone,

They let me out early on payroll yesterday. The Nurses (wardens) were really good whilst I was in solitary and for good behaviour plus my cell count improving enough they let me out. As everyone says, it is not easy. Carol. I had 5 days of vomiting, upto 5 times a day, 2 days with a bit of Diarrhea and then the temp spike upto 39.4. The antibiotics also gave me a bit more Diarrhea but overall I managed. I don’t know about the UK but the plan is in 4 weeks I will have Blood, Urine and BMB done and only then will they decide if I need to have a 2nd SCT straight away. As for hair falling out, typically it’s not gone as expected. Where it was vey thin, the hair has stayed near the crown. Where it was thickest, it has fallen out so now I have a sort of ring around my head, I’m having it all removed later because it just looks ridiculous. Still very tired, need to rest fairly often but happy I am out.

Ang, sorry to hear about Graham’s infection, they have to be so cautious because he will be so ill whilst in there and with a severely compromised immunity system, it’s just not worth taking the risk. Best of luck to Graham next week.

Richard

[dickbParticipant]

111? that’s high, I was told that anything over 120 is dangerous because the blood thickens. The most I had was 104. Now time to calm down, weight loss is normal, I lost 15kg and am now back up to almost my original weight. PP of 50/60 is a big drop, while others talk of having pp’s of below 20 or ideally 1 or 2, it is only one type of indicator as to the level of Myeloma your dad has. Mine have settled at about 32, fortunately, living in Germany they are still going to do STC. As for Neuropathy after velcade, for most it does dissipate, I finished Velcade end of October and only over Christmas did the Neuropathy reduce significantly.

So, it’s all very traumatic, there will be ups and downs and just when things seem to be moving on, MM will do something to throw you. The medics know what they are doing and they will be working very hard I’m sure to give your father the best chance possible.

[dickbParticipant]

Thanks Ang,

The support group we attend here in Germany is fantastic, they know how bad my German is but they are always positive and willing to help. The big thing is that someone there has gone through what we are going through and no matter how vague or weird a side effect may be, there is always someone that has had it and knows how to deal with it. Like most things, the hardest part is starting, once Graham has gone the first time, it will get easier for him.

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