[AMcGuireParticipant]

Hi there, me again.

I've posted in the "newcomers" section (although I'm an oldie) but wanted to simplify my post to just dealing with Johns latest issue.

John has relapsed for the 1st time. He started on Velcade a couple of months back February/March. Prior to treatment he didn't have good health, constant back pain, sleeps lots, no appetite etc … the usual. However on treatment he's been sleeping instantly on sitting or lying down, I find it fascinating! I have even noticed he can sleep whilst standing/leaning on something?! wow, very clever trick!!

However, joking aside, his sleepiness has caused him to fall down the stairs (yip, from the top!). His back is completely black with bruising and he took off a good bit of skin too. He had vertebroplasty a few years ago where his 7 bone breaks were cemented, as far as we are aware he has no further breaks. After his fall he began with very bad diahhorea, it was volcanic and ofcourse after his fall he could hardly walk never mind run to the loo!! It was a mess, bless him.

John had such bad diahhorea he was admitted to hospital for IV fluids. He's been up and down whilst there – his blood pressure is low so he passed out, he is now on bed rest. Velcade has been stopped as he's now too ill with everything going on. His kidneys are now deteriorating too.

The diahhorea stopped for a few days but has started up again, just as bad as the first time though nursing staff are caring for him now. I'm getting rather worried for him now as his body is taking so much on. Its a wee shame.

Q – Has anyone else experienced bad diahhorea from Velcade?
Q – Has anyone else experienced loss of feeling/internal nerve damage from Velcade (John is incontinent now, he has no feeling where bathroom activity is concerned).
Q – If you have had nerve damage of any sort then do the nerves repair themselves once treatment has stopped?

Thanks for taking the time to read or reply, its very much appreciated. I find I learn more from these forums and discussion groups than I do from speaking to medical staff.

Many, many thanks and best wishes to you all.
Angelina xx

[zasrsParticipant]

Hi Angelina

gordon had 6 cycles of velcaide prior to his 2nd sct and apart from the dreaded dex seemed to sail through the treatment with few side effects, though nutrafils dropped and at times could not have velcaide. I am sorry that john is so poorly,and sorry i cannot help more, at least he is in the best place and being cared for.

best wishes sarah

[AMcGuireParticipant]

Hi Sarah, thanks for your message.

Isn't it funny how things are so different for each individual?! I suppose it would be a boring old world if we were all the same, lol.

Poor John had the nursing staff very busy last night, I hope he is better tonight and actually gets some sleep. Bless him, he's a poor wee soul.

As you rightly say, he's in the best place and is being cared for so thats all that matters. Hopefully the chemo drug will work its way out of his system and he can gain strength before they throw more at him.

Sending love
Angelina xoxo

[brochoParticipant]

Hi Angelina poor John is really having a rotten time but as you say he is in the best place at the moment. I didnt have any diarrhoea when on Velcade , my problem was severe constipation. It was explained to me that velcade affects the nerve endings in the bowel and intestines in the same way it affects fingers and toes, it sounds as if John has been severely affected by it. I did have some peripheral neuropathy whilst on velcade but the effects of that went completely within 3 months of my last dose From what I have read and been told peripheral neuropathy caused by velcade is more likely to be temporary wheras with thalidomide it is likely to be permanent Perhaps they will switch John to Revlimid as his side-effects are so severe it does seem velcade is no good for him. Hope you get a good nights sleep , you must be shattered love Bridget x

[tomParticipant]

Hi Angelina

Sorry to hear about Johns Problem 🙁

I have had CTD then SCT and so far am doing good only need Zometa once per month, so cant add to this apart from wishing John well 😀

Its been said John is in the best place and being looked after.

Wishing John a seedy recovery to get home soon.

Love

Tom "Onwards and Upwards" xxx

[AMcGuireParticipant]

Thank you Tom and Bridget for your supportive messages.

I've had John home from hospital for a week now – you could have knocked me down with a feather when he told me he was being discharged!! Only 2 days prior the MacMillan nurse had said the nursing team were very busy with him, he needed a lot of support and so he was a long way from home!? Eh?!

Anyhow first couple of days at home were scary both with ongoing diahhorea and mobility issues. Over the past week his diahhorea has slowed down – now that I've said it out loud it will no doubt bite me on the bum (so to speak). John is in bed permanently so mobility not such an issue until he needs to use the bathroom – this is where we form a conga line and he holds onto my shoulders …. not ideal but works for us until he's more mobile again.

We've had a care package put in place so John is getting lots of adjustments to the house that weren't already done a few years back when he was first ill – stairlift, comode for the bedroom, self-cleaning toilet for the bathroom, more bannisters etc …. its all happening at lightening speed so I'm very impressed with our council. As for the toilet – well I'll never get anything done in the house again, I'll be spending my day on it, 😀 It has a heated seat, and gives you a wash and a blow dry!! How very clever! This ofcourse will give John some of his dignity back and saves me having to sort him out.

Visit to consultant yesterday was to wave him goodbye. John has been attending a hospital 40 minutes drive away, however a new local hospital has recently opened just 10 minutes away so John is reluctantly transferring – phew, lots of money to be saved on petrol and time ofcourse too as well as a shorter more comfortable drive for John.

Velcade is still on hold until his Kidney function stabilises, I'm hoping this can be held off until we return from our little holiday in July. We head to Great Yarmouth – my childhood holiday destination, I've been going since I was 10 months old and love it there, the girls love it now too. Depending on Johns mobility/health etc he'll either be in the cattery with the cat or coming with us … we're all hoping the latter.

His appetite is back which on one hand is great, but on the other I'm running here and there fulfilling his every wish! 😛 At the moment he's almost cleared the butcher out of lamb chops, bless him. So long as he's happy though I'll do what I can to sustain that.

Sending love to all
Angelina xx

[scott9Participant]

Hi

This is my first contribution to the forum, but I have read the various topics with interest and it has helped me a lot. I started my treatment last October with a combination of Velcade and other stuff. It nearly killed me. I lost loads of weight and I suffered really badly too with the runs. Every hour or so, 24 hours a day. By January I was too ill to continue that treatment. My doctor switched me to lenalidomide and the side effects have been minimal since then. I recommend you push for a change. I have two more sessions to go and my readings are heading towards the normal levels now so I'm hopeful they will get there by the time I finish the course.

I'm just left with a kidney function at about 15% currently. I'm praying I will avoid dialysis, but its going to be close. Then at some stage they will sort out my osteoporosis.

Good luck on beating this disease.

[tomParticipant]

Hi Angelina and John

Hey dont we soon get better 😀 I recall after my SCT I asked when I might be going home on my 13th day and was told it will be about 7/10 days all being well 🙁 but 3 days later I was packing my case and heading home 😎

Took me some time to get into my eating habit dint ever think it would come back but hey ho its back (please see fat :-S belly)

Wow and aren't you busy with changing your home, love the idea of the self-cleaning toilet could have done with that myself ha ha.

Good Luck and now its an "Onwards and Upwards"

Love
Tom "Onwards and Upwards" xxx

[AMcGuireParticipant]

Awe bless you Scott, thanks for replying.

What a rotten time you've had. I do hope your health continues to improve … sometimes the treatment can be worse than the illness itself.

Reading your story was like reading my Johns story. His kidney function is also poor, his back in a state although his 7 broken bones were cemented through vertebroplasty a few years back. As for the diahhorea, wow, there's just no end to the stuff! I suffered ulcerative colitis (bowel disease) a number of years ago so have a "diploma" of my own, my bowel was removed thankfully but now John has taken over in this department, bless him.

After a few days diahhorea free he's only just in the past couple of hours started up again, oh dear. The consultant has toyed with the idea of starting him on Revlimid (also known as lenalidomide I believe), however he's still too ill yet for any form of chemotherapy. The plan, for the moment, is once he's well enough, is to start him back on a lower dose of Velcade and see how that goes.

Fingers, eyes and most importantly legs crossed it will come to an end sometime soon.

Sending healing thoughts and love
Angelina xx

[AMcGuireParticipant]

Ha Ha …. you were the first person I thought about Tom when we were offered the stairlift – "onwards and upwards" right enough, and every time it'll be used … unless for "onwards and downwards" 😀

Yeh, the toilet sounds wonderful – I'll never leave the house again!! I can see us all fighting over it already, will need to issue a rota system. 😀

Well I have indeed been bitten on the bum saying outloud earlier that Johns diahhorea had come to an end …. its gone and started up again, oops. Hope I didn't tempt fate?! He's lying in bed like a burst balloon once again, poor soul, its taking such a lot out of him (literally!!).

Tomorrow is another day, hopefully he'll be brighter again (and no doubt sending me out for more poor little lambs to chew on!).

Sent with healing thoughts and love
Angelina xx

[scott9Participant]

Hi Angelina,

Many thanks for the response. Its all relative. I don't think my experience was much worse than a lot of people with myeloma and its been a lot better than a friend who has mouth cancer. I just gritted my teeth and got on with it.

Things got so much better for me once I had switched to lenalidomide (or Revlamid if you prefer to use the brand name). I seriously recommend you push hard for that rather than even reduced Velcade. Why is your specialist reluctant to start John on that? It does the same job and has worked so far for me with such less side effects.

All the best

Scott

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