Hi Jan
How is the velcade going now? Got the sickness under control yet? It’s not nice trying to balance all the side effects.. I think I feel worse trying to deal with the vagaries of the constipation caused by this and the runs caused by that- so that sometimes I just stay at home because I can’t plan a route that includes enough toilets!!!
I have spent the last 3 months watching my light chains start to rise again… They dropped a bit this week so am still on the pomalidomide thankfully and hope to continue though I have been warned not to get my hopes up! This is not good news but I live in hope.
I’m off Christmas shopping in York on Saturday – my sister is 60 so all my sisters and mum are meeting for lunch in York – this is the first time we have ever had a girls trip out together as my dad always insisted on going everywhere with us!
Al is loving his new job.. I’m hoping this honeymoon time lasts as long as possible, I’d hate him to get bored soon.
Hi Andy are you completely recovered from your pneumonia now? Or is there physio still going on? Have you done your Christmas shopping?
Hope both of you are improved for Christmas
Love helen
Dear Eve
Ha ha ha – do you have the pattern for this!!! I wonder what people would say – it’s almost worth it for the laugh, my husband could have worn them last week in freezing Austria. Are you back in the uk for Christmas or still away. Any newzealanders visitors? None of ours are making the trip this year, too many babies and no money, but they were,nearly all here last year for our daughter’s wedding.
Dear Ann
I’m hoping I’m not too gloomy about the fact that I’m just sampling all the drugs one after the other, I suppose it just shows how much you have to just get on with doing all the things you want to do and not waste time being sad and miserable. I will keep posting of course
Love Helen
Hi Andy
I’m back from Austria – very nice, beautiful, clean pretty chocolate boxy villages and gorgeous Salzburg, did some walks in the snow and the Christmas markets. Quite festive, but very cold -7 at night and -4 during the day.
Good to see you recovering well, got all your Christmas shopping done yet? I haven’t – clueless as to what to get!
I’ve just finished cycle 14 on the pomalidomide, but it’s the dex night and I am feeling wide awake and queasy from them! Im hoping the tablets work soon.
Love Helen
Helen.
Dear Eve
I do hope I don’t really sound as though I’m giving up on hope, I’m not, though I suppose that the constant round of treatment is getting very wearing at times and it becomes more difficult to sound as optimistic as I used to. Soon it will be 5 years – when I say it like that it sounds like a long time really and I’m pretty well despite it all.
I’m so pleased to read about your trips away, I’m off to Austria next week for a trip round the Christmas markets so that should be good fun.
You take good care of yourself
Much love helen
Hi Jan
I seem to have been absent again, I blame the poor internet signal I am subject to here! I must get this iPad seen to! Number one son has job with apple care now so will get him to fix it I think! The music business is now an evening thing, I think he realises that until he gets his lucky break he has to earn a living somehow!
How is the velcade? Have you had your first results back yet?
I did nothing much about the red lump at all,I was told not to rub it as it might be more irritated so I left it alone, gave it a few days to settle then slapped on the e45 when the skin went very dry, they vanish eventually – some made no marks at all so there may be some operator error! When the were really uncomfortable I found waist bands on trousers pretty sore- Couldn’t wear jeans at all.
I didn’t get sick from the velcade but the cyclophosphamide and dex made me sick, and now on Pom and dex I still get a day or 2 of nausea so take omeprazole and maxolon on a couple of
days a week, it works quite well so I just manage it like this.
Love Helen
Hi Andy
Good to see you back on form again, are you getting out and walking to the pub yet or just rambling round the house? It’s not nice being so poorly but we are so at risk of infections with the dex and the pomalidomide, my neutrophils have been at 1 or less for a year now. I’ve completed a full year on pomalidomide now, started cycle 14 yesterday and I’m still feeling good enough on it, a few uncomfortable niggles which I just have to deal with and still no sense of smell or taste but I’m off to Austria next Thursday for a week, just hope I’ve got the energy to go round all those Christmas markets!
Now no more shocks for Steph, keep away from the bugs!
Love Helen
Dear Eve
I’m so glad to see your face brighten up this page, I’m trying not to be so addicted to the iPad and ration my sessions a bit, so I missed your post! And anyway since my last relapse my story isn’t really a ‘good news’ story so I’m more reluctant to post! I wish I had more of your bluntness.;) I can’t do Twitter and am banned from face book… Long story!!! Send my regards to Tom and Wendy. Anyway you do seem to have grabbed life by the horns and are getting on with it, Slim would be so proud of you for it. He was lucky to have you to help fight his corner, such love.
Keep going in your mobile home, I escape as much as possible to our holiday home, it’s a great retreat and I love it.
Much love to you on your next stage of the journey.
Love Helen
Hi Susie
Sorry this is so tardy, I don’t have any pps. My pp at diagnosis was 2.9 and light chains 800. But bone marrow around 60% myeloma with some lymphoma characteristics … Such is the individuality of the disease. Since then when I relapsed treatment started again when my light chains got to 30% of the diagnosis number and bone marrow at 20%… But the pp never has returned! Next time treatment started at 30% and this time it shot to 50% then up to over 900 when I started on pomalidomide urgently. It is now down to 150, and has been around this number since March…. Which is quite gratifying, I just hope it keeps working! Every clinic visit is a bit of a drama, I get quite worked up about the whole thing! I think that is normal though, it’s such a worry.
Velcade…well it was ok, tiring and the fatigue is unpredictable, I had peripheral neuropathy a bit which mostly resolved on the rescue week, though I had it a bit before I started it. I found it more annoying to have to go to the hospital as it was a 3 hour visit for a blood test and an injection which took around 6 minutes of treatment time!
One of our other myeloma ladies has just started velcade and she’s feeling really much better on it than before, so she was ready to take it, I think they waited until her pps were up to 20 (her diagnosis number had been 76)
I thought Revlimid, like Pomalidomide, was easier to take and fit normality around but I was and am a bit more fatigued and I have no stamina, but it is working so I will continue until it doesn’t!
Hope your numbers have dropped again and it’s just a blip but if not do keep in touch and I hope you find a consultant you can work with, it is such a worry, and that’s not very good for you!
Love Helen
Hi Jan
I’ve just been reading your post to Maureen and see that you are now starting the Velcade, hope this all goes well, pace yourself with it, the fatigue I find is still very unpredictable. And go for walks with lots of tea stops! I did find it a bit nippy with the pn in the feet but it always settled down with the week off, and if you are on the cyclophosphamide – take the anti sickness drugs in advance of the drug… I found that the best move. As for hibernating… Well it is winter! It’s allowed! Let’s hope it goes smoothly.
I’m on the dex tonight so sleepless in Newcastle .. But the pomalidomide continues to give me a pretty good quality of life.. Even managed a few hours in the garden before the weather changed. I really hope someone decides that this drug is an important one for us to have available… But hey what would I know!!
Still no job for the boy! He’s doing percussion gigs where he can, all unpaid so they classify as voluntary work , I just hope something comes along soon for him.
Hope today went well and that you weren’t hanging around too long at the hospital.
Hi Andy
I’ve just read that you are proper poorly. I’m thinking about you and hoping you are on the mend now, let us know how you are when you get back to your screen.
Love Helen
Dear Maureen
I’ve not been on here for a while but I’m delighted to hear that Ian is as well as this, you must be very relieved and happy. Get all those holidays you missed booked and enjoy the sunshine.
Love Helen
Hi Andy are you better now? I’m languishing here with an awful cold, hoping it doesn’t materialise into anything worse! I’m about to cancel my lunch date and head back to bed- I hate feeling ill!
I’m on cycle 12 now and I’m still ok on it
Love Helen
Dear Jan
I’m sorry to hear about the move to treatment again- you will find it manageable but it’s such a blow to know that it has relapsed to this extent, even though it’s been on the cards for such a while. I found Velcade a bit unpleasant- it gave me peripheral neuropathy the 2 days after I had it, but always settled back to normal every cycle. Hopefully you won’t have any trouble with it.
I did find that I got more energy and stamina back as I progressed on it, despite the dex. You are right about the pomalidomide exclusion from the cancer drugs fund- this is very bad news for us – especially those who may need the drug after November – I’ve signed a petition on 38% against the move. I only hope it works.
It’s good news that your son has moved, mine is still looking for work but it’s a slow process !
I’m hoping all goes well for you – I’ll keep my fingers crossed that it’s all a smooth path. Do you have far to travel to get the injections? That’s a nightmare for some people as you spend so long in the clinics!!
Take care of yourself Jan
Love Helen
good evening gentlemen,
I have this trouble too, an assume dex is the problem, no pain but husky. My husband says it’s quite nice!!!!
Helen
Dear Susie
You are allowed to feel like this, it’s so overwhelming, just when you think it’s all going ok , you get clobbered again and have to start from square one, it’s a bit like snakes and ladders and it is hideous. I couldn’t believe I was relapsing after my SCT so didn’t ask for the numbers for 2 months – until I was told I had to be treated again- if it is any consolation, I was on maintenance lenalidomide after SCT and got 12 months before my numbers started to rise – then I had 5 months before they got high enough for treatment, during which time I came to terms with it all over again.
I had velcade, it worked well really. But I started to relapse again about 4 months after it finished, I’ve had high dose steroids but continued to relapse and am now on pomalidomide which has slowed it down and I’m plateauing at the minute.
I don’t know of any trials at the minute but the mmuk site has a comprehensive list of all the trials going on just now, or ring them up and ask.
My advice would be to try and trust your team, if you don’t, get another opinion, and most of all …. You rant and rave girl… It’s so unfair, but you will get over this hump and move on, it may be that the numbers settle a bit and you can hold off treatment for a while , grab a holiday if you can, and most of all ..be gentle with yourself just now, it is a horrible shock, you have been through so much all ready. How can it be that just as you were getting used to it it comes back and to quote Eve of old’ it comes up and bites you on the bum again’
Much love … It’s an awful time for you
Helen
Hi Mavis and Andy and Jan if you are there
Another dex night – midway through cycle 11 and facing the long night of reading and late night TV – son back from uni and still no work! He says he needs a holiday ! – I’m finding this very stressful so have given up whinging at him , though a bad dex day tomorrow might galvanise him into action!,
I’m getting used to this pomalidomide stuff now- it’s not 100% predictable but I managed to get to a field in the middle of the countryside and negotiate rough ground and portaloos at a local show without giving up after an hour… I count that as a significant step, and I chopped down half a tree this weekend before handing the saw over to the men in my life, it’s this giving up the things I used to do that I find hard and losing independence – I was very worried that the lads would injure themselves with the saw as I’d not be much use on the first aid front these days.
Mavis, it is lovely to know you are still in remission and able to do the things you want to do.
Andy , I’ve not read any other posts for a while- how was Greece? We are off to Austria, all being well, in November, I plan to eat sacchertorte in Salzburg until I’m sick.
Jan have you started treatment again? Do let us know.
Love Helen
