[CarolBradley1Participant]

Hi Andy
Glad to hear your doing so well. Pleased to hear that you are coping so well with Pomalidomide – I am now on cycle 24 and just can’t believe where the time has gone. I too get the dreaded cramps – even in my hands if I grip something every now and again and a few other side effects that you know about well enough. My only real downside is from some of the my medical team who have made it pretty obvious that they resent the price tag of the drug. I have had comments such as “well I like what the drug does but not the cost of it” and “Good morning my most expensive patient”. I suppose I am being a bit over sensitive but it doesn’t help when there is so much else going on. There is no one else in my local authority still getting polamidomide – either gone or had to stop due to side effects.
Anyway, hope you enjoy your holidays and keep up the good work with a relaxing drink – that will do you a world of good a laugh and some relaxation is what does us all good – we’re grown ups and allowed! Take care Very Best Wishes Carol xxx

[CarolBradley1Participant]

Hi Sue
I have just started round 6 sand my opinion has c one down from 13 to 3 – phew! We were getting worried as nothing else seemed to be working for me until pomalidomide was offered.

The side effects are very little now it’s. into my system – in fact, the Dec is far worse!

Hope your ‘pp. comes down SOON

Love Carol xxx x

[CarolBradley1Participant]

Hi David
I was interested to read your clever trick with the water. No one has, ever mentioned that I should drink a lot but perhaps I should start. Thinking about it I probably do drink enough but it's tea and coffee with the odd fresh orange juice – will this suffice do you think? What is the general rule please?
Keep well
Love Carol XXXXXX
Ps had a thrombosis last week after they took my vas Cath out two weeks before (well they think that's what caused it anyway) so perhaps drinking would help thin my blood a bit more as I am on daily injections at present.

[CarolBradley1Participant]

Hi Anne
No, I don't work now which felt very strange at first but the treatments of the last few years have sometimes felt almost like having a . Job !
Unfortunately after all the preparations over six months they have abandoned any more at temps at stem cell collection due to low cell counts so it's back to velcade for a few months to keep the pp down and hope it stays away for a while!
Hope your back eases of soon and try to rest it (boring I know)'
Take care
Love Carol xxx

[CarolBradley1Participant]

Welcome Anne
Sorry to meet you this way way-it takes a while to sink in but I hope it encourages you to know that many of us have enjoyed some success in battling this stupid cancer.I myself was diagnosed in 2005 and although I'm not as active active and sporty as I was I'm still kicking!
This is a great site with lots of nice people who are happy to share their experiences experiences or just listen.
Good luck with the chemo (it was nowhere near as bad as I had imagined so don't listen to horror stories please.
Best wishes Carol XXXXXX

[CarolBradley1Participant]

Hi Christine
So sorry that things are rough but HOPE this helps. My act failed in Oct last year with a horrific 97% but they have finally got it down down with PAD.We have just been told that they are abandoning any further idea of a second act as I don't Ha ve enough stem cells so as am starting a low "consolidation" course of velcade on Monday.
I DO understand hoe frantic you feel but there are new novel drugs out there,especially if you have made it clear your willing to go on a drug trial.
Best of luck to you both. Carol xx xxx

[CarolBradley1Participant]

Hi Terry
I have only just seen your post because I have been "out of things" for a while – chemo etc. getting ready for the second transplant having had the same rotten news as yourself. I don't blame you for being bitter but at least they found it early – mine seems to have becomr non secreter (not sure if that's exactly right)so the urine tests etc didn't show the pp rising alarmingly. It was only when I complained of terrible pain in my groin, back and ribs they did a bone sample and found that my marrow was 97% myeloma cells so you can see that I was extremely relieved they got me onto chemo within 48 hours and I'm still here although quite weak and anxious as to the coming months.
I do understand how dificult this is but I do hope that by now you might have some more definite news which will help you plan what happens next.
Very best wishes
Carol

[CarolBradley1Participant]

Mari
As I explained to Nettie I am about to undergo my second transplant and your experiences and knowledge have encouraged me greatly to go ahead with a bit more confidence.
Many thanks and good luck to you both.
Carol xxx

[CarolBradley1Participant]

Hi Nettie
I too am having to make the decision to go ahead with a second transplant – I was in remission for about 18months followin the first. Having read your very helpful personal experience I feel so much more confident in going ahead with my second procedure. I struggled greatly during and recovering from my first transplant which is probably why I am so hesitant and nervous but you have helped a lot.
Many thanks
Carol xxxx

[CarolBradley1Participant]

Thank you so much for your lovely message – I'm sure you know just what a real difference it makes.
You are right – I will be out on Harry again in a few months and we will have forgotten all about chemo.
love Carol xxxxx

[CarolBradley1Participant]

Hi Eve

As you may have read I am feeling better now after starting treatment and meeting my Macmillan nurse – as our pals say on here "onwards and upwards" but I am sure I wouldn't have felt as relaxed and positive as this withoutall the support received from the kind friends on here.
love and a big thank you hug.
keep well love Carol xxxxx

[CarolBradley1Participant]

Thanks Megan
I'm feeling much more positive now we have got started with things. Also I have met my Macmillan nurse for first time and feel as if I can ring someone with queries without bothering doctors with little things.
love and a hug
Carol xxxxx
😀

[CarolBradley1Participant]

🙂 Thank you for your lovely message – just knowing people take the time to write when they are struggling with this themselves makes such a difference
Love Carol xxxxx

[CarolBradley1Participant]

Hi Liz
Thanks for that – it realy does help to know that people understand as,it's not always easy to be 100% honest with family and close friends.
Treatment going well so that's a big relief although I don't knoe if it's working yet!
love Carol xxx
😀

[CarolBradley1Participant]

David,
Just to let you know that after 2 weeks of treatment it's not as bad as I thought it would be even though it's early days. Am feeling much more positive after so many kind messages – they really have given me a lift!
Best wishes
love Carol xxxxx

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