[HelenParticipant]

Hi Theresa
Thanks for explaining about the trial, I understand a little bit about how some of these proteins work and the race to find a drug which switches off the malignant plasma cell production is important for all of us. I hope it works well for Peter and that he is recovered from the work up.
You are allowed to be negative, it's a very testing time and its not always possible( or healthy) to not acknowledge the reality and the seriousness of the situation.
Keep in touch
Love Helen

[HelenParticipant]

Hi David
Very nice , good all year round by the look of it, it's not one I've tried growing. I just bought some snakes head fritillaries and some alliums to brighten up the pots on the terrace. I'm going to have flowers out side the window all the time now! Even if it's expensive, it makes me smile. Even when the blackbirds uproot the bulbs
Helen:-)

[HelenParticipant]

Dear Joe
It's such a hard time, you feel as though your heart is going to burst with the pain, but you have done the right thing, even though it is so vey difficult.
Keep phoning your mum, she will understand, if I were in her place I'd be feeling so sad, but also very proud of you and your sister for trying to get on with things.
Your dad will always be with you, every time you think of him he will appear in your minds eye, and bless you for going on with your life.
Do you use Skype to talk to your mum, that way you can see each other too. And is that your dad in the photo? If so he looks so proud of you.
Hang on in there, the going is tough
Love Helen

[HelenParticipant]

Well David …… that gave me a bit of food for thought ……. I even had to go and look it up!
I hope you are getting better from your recent illness. How is the hedge getting on? I've cleared the back yard, will tackle the front garden this week
And Theresa do let us know how you get on ……what is the AKT trial about?
Bridget, how much mobility do you still have or are you most restricted by pain? I've lost track of our recent conversation.
Mavis I'm sure your appointments will be in the post soon.
Love Helen

[HelenParticipant]

Hi Stuart again! They are not following on either, I've tried to send this to you but I think I might just be cluttering up Mavis' s in box now
Sorry Mavis
Helen

[HelenParticipant]

Hello Stuart
The posts are in the wrong order too
🙂
Helen

[HelenParticipant]

Hi Bridget
My docs are good and we have a great specialist nurse, I trust them and they seem to take aches and pains and bruises and infection seriously. Oligo just means little or scanty. I'm an orthopaedic and trauma nurse by training, and was a ward sister for 15 years followed by a move to research. I've been a clinical research nurse for the last 20 years first looking at the effects of new analgesics but the last 12 years have been working in mental health research. So i have a bit of an idea of how your work went, lots of mdt meetings!! I feel cheated by this disease, I thought I'd be leaving hospitals behind me in a couple of years time but now I find I'm going to be regularly attending -on the other side of the fence- for the rest of my days. I want to go back to work and see 40 years out but I'm still very tired. Over the pneumonia though thankfully, it's been a bit of a shock to the system.
Love Helen

[HelenParticipant]

Hi Bridget you just ramble away …..i like it…. And i don't do face book, promised the kids i wouldn't interfere with their domain a few years ago it's a bit limiting now though… Maybe i should try tweeting…. Anyway i'm rambling now…… Its catching…!
…too much knowledge…. Well it's a double edged sword isn't it? It means you make informed decisions but maybe you have more anxiety in the process and also never relax about it? Equally you can use your time effectively because you have a good grip on the reality of the situation and can be quite pragmatic.
I've been afflicted with a 'mild' pneumonia recently which has brought me up sharp, having never had a days illness in my life until a year ago when all this started and it has floored me. Still I'm better this weekend and hope to continue to improve.
Something I meant to ask a while ago was when you became a non secretor or was it always? I'm described as an 'oligo' as all my blood results were low but bmb showed 50-60% infiltrate.
Has your young casualty got to go to the dental hospital for follow up or just his dentist?
Love Helen

[HelenParticipant]

Hi Bridget how are you now?
Love helen

[HelenParticipant]

Hi ?
You are not burdening us with anything. Just spreading out the load to make it easier to carry.
It must be hard to bear after all this time on the revlimid, and families are not easy to share the anxiety with either, we don't want to hurt them or make extra demands, that's why I like this site too. Just have to keep plodding on and hoping. Chin up and hang on in there:-)
Helen

[HelenParticipant]

Hello Terry and Fadia
As I said in my first post these are serious questions for the experts. The way to second and specialist opinion is via the primary consultant or GP.
Helen

[HelenParticipant]

Oh Nicola how unbearably sad for you all, stay with him as much as you can over the next few days. I do hope you can get him home. It has been such a short time for him, such aggressive disease. I am sorry
Thinking of you
Love Helen

[HelenParticipant]

Hello Nicola
Hope your dad has improved when you see him next and you manage to look after yourself too. I've been on the lenalidomide for a few months now, both pre and post transplant. I'm a bit tired and had a few recent infections but it has worked well for me so far, I'll keep my fingers crossed for your dad.
Helen

[HelenParticipant]

Good luck with the treatment Andy
Love Helen

[HelenParticipant]

Dear Terry, Fadia and Mavis
I'm very interested to hear what you have to say about this but please remember that when you are in the watch and wait group, while it is a time of great uncertainty, it is not the same as being told that treatment is needed to save life and prevent major organ damage.
When I was told that I was at end organ stage, that is that my anaemia had reached a point that I would need emergency treatment in the near future I did not have the luxury to wonder which sort of treatment to have. It was quite simply a case of 'treat me with whatever you have so that I might possibly extend my life long enough to see my son through university' .

In the uk we use a system of evidence based medicine and while there will be mistakes, overall we get a pretty sound set of advice about treatment, no treatment is the best option until a number of criteria have been reached, then CDT gives overall the best life quality and quantity. America has a very different system. And I would also question the use of homeopathy, i am not aware of any clinical trials in this area yet.
Myeloma is an aggressive cancer, best left to the haematologists and their multi disciplinary teams.
I am sorry if this sounds a bit harsh but you must address these sort of questions to the doctors treating you and the expert nurses on the help lines on this site.
Good luck to you all
Helen

[Author]

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