Dear Mavis
I'm nearly at the end of it and it can't come soon enough, my sore feet and bad temper are most annoying….. To everyone! I'm not a good patient..in fact, I'm really dreadful…. I keep trying to be dignified and resigned with the situation but end up snarling and being horrid to everyone, then I feel guilty as they are only trying to help! I'm best left alone…… Then I feel neglected! So it's a no win situation for all.
Yes I will go back to work and see how I get on, if it all gets too much I can retire on ill health grounds, but I quite like the discipline of work and I have discovered that I like planning the holidays and spending the salary on ourselves for the first time since the children were born. ( though we still have one of them on the books -hopefully he graduates next year)
I hope you are well since finishing your chemo?
Love Helen
Hi Ali
It's really thin and I can see my scalp! Horrible, and as you know, I am terribly vain! I've a new form for a wig but can't bear to go and try them on again either, shall be sporting many new hats soon I think!
Not long til the holiday now, hope it is fantastic….. You must visit the roman cistern in Istanbul if you don't go any where else… It's marvellous. I love it.
Dear Debs
Congratulations on your 2nd anniversary.
Re Revlimid maintenance… I have a copy of the protocol here and it says ' in the absence of toxicity, lenalidomide is continued until disease progression – I understand that means as long as possible and the drug company is legally obliged to pay for it. All those blood tests done every 2 months go to Birmingham for the trial monitoring.
Progression is measured by ' clinical symptoms, FBC, paraprotein and free light chain assessment, urinary light chain, bone marrow assessments, and defined using the modified International Response Criteria'
IRC are (briefly)
Reappearance of serum or urinary pp
Raised bmb cells by 5%
New lytic lesions or plasmacytoma
Hypercalcaemia
–BMB is only done if relapse is suspected
Zometa can be continued for longer than 2 years especially in those with considerable bone disease – the jury is still out as to how long but they are veering towards forever for that too if there are no complications.
Does this help?
Love Helen
Hello Ali
I'm ok …. Finding Velcade hard to deal with …physically tired and my hair is falling out again:-( but i am nearly at the last hurdle…. Only 1 more cycle to go, blood results are really good though…….. They just have to stay down!
I'm a bit bored with it all too….not being at work but not even able to do the garden or housework either, have found my hands too tired to knit much, so it's all the old films and dramas and lunch out to keep me going. It's a very different life.
How's your mum? You must be near to going on your family holiday? Where are you going?
Love Helen
Dear Carol
Your results are going in the right direction but you have raised light chains too so 6 cycles might bring them down to a much lower level. The lower the levels of pp and light chains , then the fewer mm cells in your bone marrow when they harvest is the theory.
Just hang on in there
Helen
Hi Jean and David and all
I'm sorry I'm not as involved as usual but I'm still trying to keep tabs on everyone.
I'm finding this Velcade lark very difficult to get to grips with and dexamethasone dementia is NOT helping, in fact the best day in each cycle is when I'm on the 2nd day of it, have energy and the least amount of PN.
So they have reduced the dose, its still working for me, light chains now at 6…… Hurrah… And only get the dex, cyclophos and Velcade once a week instead of twice.
I've been very carefully monitored and was told last week that I'm on the edge, 'PN takes a very long time to recover,' he said. 'We will not give you the next cycle if it is not resolving by the end of the week off'
I am taking paracetamol and codeine only for it but it is so uncomfortable in the weirdest of ways, like you David it extends above my knees. My legs feel weighty and tire so quickly, sometimes I feel as though its not real, if that makes sense? I suppose that normally our limbs are just there…. We don't expect them to cause bother unless we have punished them with unaccustomed exercise. I am finding I have to keep them moving a lot as its often the only way to stop them hurting, even though it's not painful all the time.
Anyway that's my dex ramble for now.
Hope everyone else out there is ok.?
Love Helen
Dear David
Im glad you seem to have had such a lovely time, maybe you can squeeze another few little trips somewhere? I'm trying to plan next year now in the hope that I get to some of the places I planned.
Love Helen
Dear Ner
I opted to take the maintenance Revlimid and was randomised to it, I had 17 cycles post SCT and was called relapsed in April, looking at my blood results they had slowly crept up from 19 in October to 55 in March, Then 155 in April .. I'm a very low secretor so the numbers are small.
We will never know if it slowed the disease down or if it just didn't really have any effect and My light cains which were wiped out at transplant just gradually made their own way back. Anyway relapse was confirmed by bmb and I started Velcade in May.
I think you have to choose very carefully here, maintenance works for some, and I was keen to give it a try, but we just don't know who it will work on! The armoury for myeloma is disappointingly small and there is a real argument for saving the heavy artillery for when you need it….
I for instance will not be able to try Revlimid on 2nd relapse as we know it doesn't work for me now but….. And I hold out for this and future developments.. Pomalidomide and Carfilzomib are just around the corner and… God willing I plan to be there to try them out.
Hope this helps
Helen
Thanks Mavis
Hanging on is right, I go in the morning for round 6 of 8 then see what happens after that, it's a bit of a mystery tour! Hope you are getting on ok?
Love Helen
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
Dear Andy
Hope the op went ok and you are soon feeling less pain in your back
Love Helen
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
Dear Maureen
That is good news, you will be all relaxed from your holiday, retired and ready to enjoy your time together without trailing to the hospital everyday. Have a good holiday.
Love Helen
Ok Wendy
So how did it go? And on treatment!! I stand in awe of you…..as I've never been back to full fitness since SCT and even find the gardening too much!
Love to hear from you
Love Helen
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
