[HelenParticipant]

I do apologise for going AWOL for the last few weeks, relapse has proved more provoking than expected and treatment is as arduous as ever. So to Ali, Jean and Pat who posted on the last thread, thanks for your replies.
I've spent time thinking about this journey a lot, I'm in a different place now, I've found myself in my boiler suit, spanner in hand, lying flat on my back in the grass just looking up at the infrastructure of this ride and wondering where it is going next and do I have any control over it at all! The answer is no!
I've stopped work for a few weeks, the discomfort in my legs is too much and I'm bad tempered and crabby with everyone on the Dex so I thought I'd do them all a favour!
The Velcade has had to be reduced to half due to side effects but not before I've had a complete response with it and light chains are now down to 8! So if this keeps up with the half dose and the neuropathy diminishes they will spread the doses over a longer time, see how it goes.
Anyway I did get to London and I did get to see the Rolling Stones, it was an effort and I really thought I wasn't going to make it, train travel 2 hours after Velcade is not comfortable but I rested the next day for most of the day and sat on a shooting stick in the crowd and had a brilliant time, photo below
I plan a trip to the Borders in a week or 2 and am off to Shetland next month
Love Helen

[tomParticipant]

Well Helen aint you been and going to BEE a Busy Bee 😀
Stopping work will do you good am sure I still go even on a crabby day (and I aint on anything)
The Photo's you put on are great I bet it was hard work for you but well worth it, the photo of you looks great your Looking Great Girl, keep it up 😎

Love Tom Onwards and Upwards xxx

[janwParticipant]

Hi Helen

I was thinking about you the other day and wondering how your treatment was progressing. Wonderful news about the huge reduction in your light chains …long may the low count continue.

What an great experience to remember going to the see the Rolling Stones. I only managed to watch their performance on the box, but was impressed by their high energy levels and entertainment value even if they looked totally knackered at the end. Love the photo of you – you look so relaxed even if you did feel exhausted which is to be expected after such a long journey.

I think you have done remarkably well to carry on working whilst you were on velcade for as long as you did. During cycle 3 & 4, I remember the feeling of discomfort and weakness in my legs, as well as the one leg above the knee going completely numb. At least being off work will allow you some time to recover, relax and if possible some more days out.

Take care.

Jan x

[bandityogaParticipant]

Hi Helen

I would have loved to have seen The Rolling Stones as I saw the film and they are still full of energy especially Mick Jagger. You look like you had a good time.

Nice to see your light chains come down so drastically and hope you continue to do well. Ian's light chains are now 271 but not concerned yet as all other bloods, kidneys etc are good. Getting out of hospital soon.

I am off to Nice next week for a few days with my daughter. I am really looking forward to having a break.

Enjoy to trip to the Borders.

Maureen x

[VickiParticipant]

Helen

So pleased to hear from you thank goodness. You were in my mind and I was worried! Know its not been a good time for you in terms of the treatment……but great results 🙂 so sort of worth the pain although probably don't feel like it!, despite it all well done for getting out and about, the Rolling Stones no less 🙂

Keep in touch if you can and enjoy your planned trip xx

Vicki and Colin xxx 🙂

[wendyduffieldParticipant]

Hi Helen

I'm so pleased to hear that your light chains have returned to normal range, great news to help mitigate the problems of PN and the dreaded dex. Sooo envious that you got to see the Rolling Stones and glad you have got some nice plans coming up.

Wendy x

[mhnevillParticipant]

Hi Helen

Good to hear from you again. Such good news about remission – long may it last! Have you finished work for good now? I hope so. You have struggled on for so long. No doubt, as you were "lying under the infrastructure" you realised that there are things that are more important than others!

I do hope you are able to fill you days with good things and many things as equally exciting as the Rolling Stones!

Lots of love.

Mavis xxxx

[HelenParticipant]

Dear Tom,
Thanks very much, what a charmer ! They should bottle you…. You always make a girl feel special…. What does the young bride make of this???;-)
Thanks Jan and Maureen and Vicki and Wendy and Mavis, thanks very much, I'm finding the velcade tricky…. I'm just not right but not totally wrong so probably did stay working too long and doing too much but hey you can't give in either. Also it is getting harder now…. that heavy leg feeling is really difficult to deal with.. sometimes i feel as though I'm just imagining it carry on walking about then find myself unable to move for half an hour, then it wears off again…. most weird.
And I'm just off sick again…… not retired yet! I will try going back…… I need to work to pay for the holidays! And I am finding it good or me to have these goals, small though they are.
And you would all have loved the gig! Watching Mick and the boys strutting their stuff and playing the soundtrack of our youth, even though they (and we) are quite old it was an enervative and fantastic performance, I was so excited to have made it there.
Hope your treatment goes well Wendy and am rooting for you tomorrow. And Maureen have a lovely trip to Nice, have a rest and some fun.
Love Helen

[tomParticipant]

Hi Helen
you are more than welcome 😀 credit where credit is due you do look great 😉 and as for my young Bride well Elaine gets some and more of the same EVERY Day Lol.

Stay well

Love Tom Onwards and Upwards xx

[EvaParticipant]

Helen, have you ever tried googling, ' Dana-Farber protocol for peripheral neuropathy?'
I don't know if it works, though I have taken some of the advice.
Eva

[HelenParticipant]

Dear Tom
Thanks again Elaine is a lucky girl, always so cheerful.

Dear Eva
Thanks for this, I hadn't seen it – though my consultant insisted that I have all the vitamins for a few weeks before starting the Velcade, and have to continue on them until it ceases- his feeling was to use any diet that gives neuroprotection a whirl as well- so I eat lots of fish and nuts etc. I am finding the once weekly treatment almost as debilitating as twice weekly but I did get the last 2 days feeling relatively normal. Back on the sofa tonight with heavy legs! Anyway that's cycle 5 nearly finished and the lambda light chains are at 7 now
Love Helen

[EvaParticipant]

Hi Helen,
I'm on week two of cycle seven. I don't know if we're on an identical treatment: I'm on Velcade once weekly, dex 20mg day of Velcade, as well as day after, and then because the Velcade didn't seem to kick in during the first two cycles, they put me on Cyclophosphamide 300mg once a week as well. So, I'm actually on CyBorD.
I generally get about two good days a week. I also have heavy legs and get the runs. My lite chains were about the same as yours when last tested, but there is still a small m-spike.
It's a very odd challenge to try and learn to do things when you can, while having an uncertain future. The day before my treatment on Monday(my best day usually), I made a special Indian dish in larger quantities for freezing – a blended spinach/curry/chilli/ginger/lemon sauce with curried meat, rice and roasted almonds. When I went to the hospital yesterday( an eighty mile trip), I did some clothes shopping for my husband because he was starting to look grotty. Last week I had four clear hours in which I was able to write. And yet, I can have days when I do zilcho, because of nausea, diarrhea and fatigue. I can be so weak from dex withdrawal and the other side effects that my husband sometimes has to bring me a snack to bed. It's a challenge to acknowledge my vulnerability and then to be able to be active when I have a small window of opportunity.
Helen, don't answer this if you're at the wrong end of a cycle: I was able to write this because I'm dexed up.
Best,
Eva

[sanParticipant]

Hello Helen, good to hear your news you are doing really well 🙂 good to hear that you got to the concert, they may be older but clearly have still got it!! shame it can't be bottled for everybody! and yes your pic was lovely and very happy day by the looks of it ha! take care love San x

[VickiParticipant]

Helen,

It was great to hear from you. Sorry it's a struggle and you are off work again but hopefully with your results this is a short term blip! Our consultant said it was always good to try and keep working as long as possible to keep that normality. This is true but when is the point when it gets too much, and after that what if you give up and wish you hadn't….it's a conundrum. Still saving save those conundrums for another day. So glad you enjoyed the concert and also what an effort it must've been all day. I'd have been knackered as well 🙂

Keep in going Helen…..are you still knitting?

Vicki and Colin x

[HelenParticipant]

Dear Eva
Many thanks for your reply, I'm finding typing a bit of a chore at the minute as I'm so tired at night, i get crampy fingers. I'm on Velcade 2.3 mg, cycle 6 starts on Tuesday also dex 20 mg Tuesdays and Wednesdays and cyclophosphamide 500mg on Tuesdays , after the 2 week regime I have a week off to let my legs recover….. This time it has taken all of the rest days to get anything like back to normal feeling in my feet and legs, I'm beginning to dread going for treatment now as I know what to expect on Tuesday night.
We have been away for the last few days and I confess to having done very little but the weather was nice and we visited a lot of places in the borders.

Dear San and Vicki
Thanks… The concert feels like an age ago now but it certainly was fun! And yes I'm still knitting but not as much… I find my hands get very tired and achy but I'm giving it a good attempt and tackle a bit every day….. I like to think I'm being productive even if I'm only turning out a jumper or 2 every now and then!
Love Helen

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