[dickbParticipant]

Having finished a course of just Velcade with Dexy followed by 4 courses of VCD I have the bone biopsy next Tuesday followed by MRI scan on Wednesday. Had a chat with the doctor at the hospital Tuesday just gone and I was hoping to be able to have stemcell harvest before Christmas. However, my IgG protein level hasn't fallen enough so it's down to what the BMB shows.

As for side effects, the pain in my feet caused by the Velcade is annoying, moving about certainly helps reduce it but sleeping is just so disturbed. of course lack of sleep leads to other things like poor attention span, irritability and poor energy levels.

Hey ho, such is life with MM.

[piatkazParticipant]

Hi Hope the BMB results are ok,I have issues with PN and have just bought some microwaveable slim slippers and wear them at night in bed and it really has helped just a thought
Ian

[Ang287Participant]

Hi Dick
Sorry to hear that the protein levels haven't come down enough. Good luck with the BMB tomorrow. I went to the the biopsy with Graham last week and it was better than he thought and was over so quickly. Graham's medication has now stopped until he has a chemo session at the Manchester Royal Infirmary on 2n December and it's such a nice feeling knowing he has got a break for a little while. Hopefully your and Graham' biopsies will show some good improvement and you can still have SCT before Christmas. Graham used to get a lot of cramps, sometimes in his feet and he drank tonic daily for that and it helped.
Good luck for tomorrow and Wednesday.
Angela

[meganjaneParticipant]

Hi Richard,

Phil has neuropathy in his feet as well from the velcade. There are three different drugs in the UK that are often prescribed for neuropathy and although they didn't work for Phil they may work for you: amitriptyline, gabapentin or pregablin. We have also been told that Vitamin B complex can help. Phil finds that wearing socks to bed helps a bit.

Fingers crossed for a good BMB result.

Megan

[dickbParticipant]

Hi Ang and Megan Jane,

Thanks for your kind wishes for tomorrow. I must admit I'm not looking forward to it, not because of the outcome but because of the pain. When I had the first BMB they told me beforehand it was like going to the dentist, afterward my reply was "you must have crap dentists in Germany" Hey ho.

As for the pain in the feet, I don't get cramp Ang, just feels like I'm walking on pins. I get to sleep ok at night with thick socks and a bedcover but always wake up with the pain, trouble is I can't get back to sleep. My other problem is I tend to slide down the bed and being 6' 2" my feet then stick out the bottom and get cold. The Onkologist said he's not worried until I have pain up to both knees and my toes are red. Suppose it must be similar to having frost bite without black bits falling off.

Thanks for the info on the drugs Megan Jane, although I have mentioned to the medics the pain they haven't suggested prescribing any drugs. I'm ok with that as I believe I'm taking too many anyway and don't want anymore.

So, once I've got the BMB and MRT out the way, I'll let you know what the results are.

Richard

[dickbParticipant]

Well, had the BMB yesterday, hardly felt a thing, bearing in mind this is an onkologist with his own practice in a small town, he tells me he will do the stemcell harvest himself. After a relatively painless BMB I have every confidence in his ability.

This morning at 7:00am was the MRT. I was given a CD with the images so I can take a look in my own time, they don't mean a thing to me but I think I have spotted where the lesions are on the shoulders.

So in two weeks it's a visit to the hospital, followed by Zometa at my Onkologist and then hopefully a date for stemcell harvest.

[Ang287Participant]

Hi Dick
Glad your second BMB was easier just like Graham's was. We were told that the first time round it's like putting a needle in soap when your bones are softer so after 6 months they get a bit harder and it is easier for them.
Graham has been ill for the last 2 days, he has been feeling shivery and nauseous and very tired – he also had an hour feeling like this on Friday last week. He is having a blood test in the morning just to check he hasn't got an infection although his bloods from last Tuesday are fine.
Good luck with the stem cell harvest – hope you get a date soon for this and the transplant.
Angela

[dickbParticipant]

Hi Angela,

Sorry to hear about Graham, hopefully they'll have some idea about what's causing it. Graham's blods being taken last Tuesday is over a week ago, a lot can happen in a week. That's the trouble with MM and chemo, the immunity system is just so compromised. My wife is dreading the next couple of months because I am more susceptible to infections. It was Pneumonia in February that put me in hospital last week, I believe if diagnosed just a couple of days later I wouldn't be here.

[sanParticipant]

Hi Richard so pleased that your biopsy was pain free and that you have confidence in your Consultant , it all sounds very positive:-)i will be following your journey, take care San x

[mhnevillParticipant]

Hi Richard

Enjoy these days before SCT. Hope it isn't before Christmas!

Do they keep you in hospital, post SCT, in Germany. You sound to be getting very good treatment.

Best wishes.

Mavis

[dickbParticipant]

Hi Mavis,

To be fair, treatment in Germany seems to be as hit and miss as it is in the UK. We have heard some horror stories at the self help group about misdiagnosis, failure to act after a bone biopsy, patients being pressured into a particular course of treatment. We were just lucky to have two top MM institutions so close to us and a very good Onkologist in the town.

I do believe that you are kept in hospital over xmas if they start the stemcell tratment, they are very much into getting things done here, a real Teutonic trait I think. All this will be discussed with the hospital doctor in a couple of weeeks time so we wait and see.

[bandityogaParticipant]

Hi Dick

Good luck with SCT and hope you get a long remission

Maureen

[PerkymiteParticipant]

Best of luck with the SCT Dick. It is great you have got this far you have really been through the mill.

The main problem with SCT is, apart from your neuts not returning!, is an infection and I was happy to stay in isolation as long as they wanted. Once out of isolation I wanted to go home quickly because I knew I had less chance of catching an infection at home than in hospital.

Chin up and keep going.

Kindest regards – vasbyte

David

[dickbParticipant]

Today had a meeting at the Hospital in Mannheim followed in the afternoon with Zometa at my local Oncologist. The long and the short of it is that the Oncologist wasn't telling the hospital anything and as they will be managing the Stemcell, they were a bit concerned. so the decision was made to begin preparing for Stemcell harvest while the hospital finds out what's been happening.

Well this afternoon, the Oncologist said he hadn't received the results of the bone biopsy so wasn't planning anything. I suspect later this afternoon the hospital had a chat with him because I then had a phone call at 6:30 tonight saying that they will begin with Stemcell stimulation tomorrow. So, tomorrow I start the injections. My LgG level is still above 30 but we are going ahead for the moment with the harvest. The plan is to start now so that the after effects and everything will be done with by Christmas. Looks like January is likely for Stemcell.

[Ang287Participant]

Hi Dick
Glad to see things are moving despite them not having the results today. You are now ahead of Graham as he is due to start the injections next Tuesday after chemo at the hospital on the Monday. we are due at our hospital tomorrow to sign all the paperwork and have final questions answered. I am stil hoping for a date in December for him for the stem cell transplant as Graham is now getting a bit worried about the whole thing and as long as he is fit enough and there is bed then let's get it over with as quickly as we can.
Best wishes
Angela

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