[HelenParticipant]

Hi there Ali et Al
Well, as you know I've been there got t shirt etc.

San ( weather fab in Cornwall, it's always like that when I go there:-)) and Jill, I think Ali is right that in frontline therapy it is different to maintenance, but do check when you go. Your mums would have thalidomide (which is an earlier version of Revlimid and can be more toxic for some people) or Revlimid and it is only for a few months. The trial is to see if it is well tolerated and effective.

As for maintenance?… There is no right answer. I took Revlimid as maintenance for 17 months. I will never know how effective it was. At the end of the trial we will only know what the group responses were, not the individual ones. I have been ill with it, I know that now as I've been off it for a month, I have less tummy troubles and fatigue now but only slightly, and I did have lots of infections. I might have had them anyway! I might have have had a better quality of life without it, but I might have had more time before relapse with it, and to be honest I would try anything if I thought it would keep me here longer.

I have recently read an article in myeloma beacon about the current testing of Revlimid and the jury is still out but there is still evidence that Revlimid is effective in preventing progression of the disease. I have put the link here.

http://www.myelomabeacon.com/news/2013/04/19/update-on-benefits-and-risks-of-revlimid-lenalidomide-maintenance-therapy-imw-2013/

It is a personal choice. We have myeloma. The risk of secondary cancers anyway is high. Life expectancy for us is around 5 -7 years on average still. Which is not great.

Love Helen

[HelenParticipant]

Dear Ellen
I do hope you will convey my feeling of great sadness to Sue, I met Keith at the Newcastle info day last year, when I was at a very vulnerable point. He was so very encouraging, understanding and thoughtful. He will be missed greatly by this community.
Love Helen

[HelenParticipant]

Hi Dai
Hope the gcsf continues to lift your neuts and mood. Good luck next week
Love Helen

[HelenParticipant]

Hi Pat
I think you just have to do what is easiest and best for you, like Eve says ' no one ever regrets leaving work' I'm still plugging away at it but I'm very lucky, though not sure for how much longer. After I start the velcade I will see how I feel and maybe make the decision.
I hired a window cleaner today, and am seeing a cleaning lady next month so that if I feel like doing anything I can and if I don't, then at least it will be done.

Eve, give slim a gentle hug from me and tell him i understand how tough it is, i know the bmb is horrid, they made me have sedation last time because he wanted ' a big sample' , I must say it made a difference at the time but I still couldn't sit down for a week.

Love Helen

[HelenParticipant]

Gordon Bennett !! Wendy, you must have been really up and down, what a horrible few days for you. I'm glad you have plateaued again. Stay there for as long as possible please. I don't know why they decided to treat now! I was in same cart as you until last week, then out of the blue really, I expected next Revlimid prescription but got 4 more weeks off and ' we think it is better you start as soon as possible, ideally within the month! ' gobsmacked, ! I'd gone on my own, husband no where near, I had to ask if the treatment could be arranged around my holiday with the kids in June so that was it. I don't see consultant again until I've completed first cycle of velcade. I do have a long list of questions for him next time though!

Vicki, I'm told I can use the stuff they already use on my hair and should be fine, I had no idea that being blonde was so high maintenance!! And you might find this amusing, in preparation to go away , yet again I have had to shave my legs! This is becoming a habit now….. One I thought I grew out of with the start of the menopause in 2006!

And Pat, you are up late, or early! Dex? Yes I saw that lady, I liked the pink too. I see you work in a university, as do I. The students we have are a nice bunch, and yes they do keep you young.
Love Helen

[HelenParticipant]

Dear San, Pat and Elaine
Thank you all for your advice, I went to the hairdresser today, they are so lovely. I'm now sporting much shorter cut, have a bottle of stuff to apply to scalp before treatment starts and an appointment for 5 weeks time to see what's happening. Today it was a bit like yours Elaine, with the bleach stuff touched on the hair and not on my scalp and the effect is good so fingers crossed its all going to be easy. Pat, if it goes too thin I'll be getting a wig again.
San I'm hoping you are keeping that fine weather going for me this weekend.

Meanwhile I've got the MRI results on my spine…. no myeloma lesion causing the back pain…… Hurrah…… What I have got is a slipped disc! So just gentle exercise and painkillers, what a relief.
Love Helen

[HelenParticipant]

Hello Liz
Well done you, like Etta I drank lots, walked round the plane every hour I was awake, watched all those films I never got round to and slept as I could. I didn't eat much. I took a course of antibiotics and a thermometer and took my temp every day just to be sure. My consultant also gave me a course of acyclovir as he thought shingles would be an unpleasant adjunct if I contracted it. I also had a course of 5 heparin injections to have 12 hourly over the flight days, there are needle boxes in the airport toilets so you can dispose of them. I had a letter from the consultant documenting my illness, treatment and medications and enough drugs to support a third world country, in fact they took most of my hand luggage. I had factor 50 and a scarf, insect repellant and lashings of moisturiser. Oh and I had the odd item of clothing!

Best of all I had an absolutely fantastic time and hope you do too.
Love Helen

[HelenParticipant]

Dear Vicki
I shall enquire from hairdresser on Wednesday when next attend, before holiday on Friday ( Cornwall ) .
I was just throwing the question out there as I'm a novice when it comes to hair bleach, having always had just rinsed or streaked dark hair. The shopping expeditions with the daughter are dangerous these days as she inevitably persuades me to renew her wardrobe and I struggle to refuse. I have to stay at work to pay for them!
Love Helen

[HelenParticipant]

Dear Scott
I'm hoping you get good results from SCT, will keep my fingers crossed that all goes really well for you.
Love Helen

[HelenParticipant]

Dear Jan
They never become less worry, even now I wonder if I should just tell him, but since he insisted on going off to uni 4 weeks after my SCT, as a mature? Student ( he had 3 gap years!). He says he told his tutors but is such an independent creature, I have to just let him go. He knows that my numbers are rising and what it means and he pops home now and again when he runs out of money or toothpaste or pants. He sometimes asks how I am and gives me a cuddle then goes off and does his music. I'm only hoping his emotions are translated through his art and he is comfortable with it all. Boys!!
Are your sons doing ok now?
Love Helen

[HelenParticipant]

Dear Jean
Congratulations to Frank, every birthday is a milestone, I shall raise a glass to him. I hope you were slightly tipsy too?
Love Helen

[HelenParticipant]

Hi Eve don't do face book….long story
Love Helen

[HelenParticipant]

Thanks Maureen, that's very kind:-) love Helen

[HelenParticipant]

Dear Dai and Eve
You are both so right, since my relapse I have felt that the elephant has had to be addressed directly, as I feel it walks into the room with me. If people do not say hello to it it and ask it how it is, gets bigger and bigger until I find it sitting on my chest and I have to talk about its feelings and deflate it a bit. What sort of company does that make me? Some people deal with it well and others do not , I give some of those people a bit of a wide berth now. I have had a long chat to my daughter recently, following the episode with the boots, but my son has exams now? What do I say to him? I've elected to say only that my drugs have changed and let him ask the questions if he thinks of them, what I want to do is hug him hard and tell him how bl**dy sad I am. As for my husband… He puts up with so much… Next for deification I think
Keep on holding fast Dai and Eve we need to hear how you go.
Love Helen

[HelenParticipant]

Dear Eva
Thanks very much for this, it is only by you people ahead of us that we discover the little tips and wrinkles which can alleviate worry and discomfort. I'm very grateful to you
Love Helen

[Author]

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