23rd **TAMOXIFEN** thread

[MaryAnnSingleton]

oh my !

Smee are you going in for your bouncy new boobie first thing tomorrow ? How long will you be in for ?

Bows to Holsten for her 16 miles. and to Sometimes for awesome swimming.

Topsy, yes have to be there first thing, but who knows how long I'll have to sit around in paper pants for. Fair enough really, as this is purely cosmetic, so cancer people on list should get preference. They said they'd like to keep me in for a night, but am going to do my damnedest to escape..! How are you today?? Must still feel blasted.

Am actually quite calm today smee .
Think it's the having a plan thingy . I always feel so much better when I can be in charge

plans are good- I am always happier with a plan ! Very impressed by holsten's walking and sometime's swimming.
smee will be thinking of you tomorrow - take care and hope you can escape.
Ds has progress review report thing- on the whole pretty good - really needs to do the extra bits outside school.He surprised everyone with his drama devised performance but then blew it a bit by forgetting to hand in a full report afterwards- oh dear..

Good to hear you're feeling OK topsy I certainly felt lots better when I had a plan/ timescale/ some bloody clue about what was going to happen to me, rather than a load of "what if. . . ??" Sending you lots of hugs x xx

Hi all am back and have shortcake. All your posts have made me cry (again) but good to be here .

amber I am not be but have sarcoma - they removed the primary grade 3 lump in jan with margins (hence radio to stop recurrence). There were only vague spots on lungs and bones then that didn't look like cancer. Now bigger spots on lung that are, also one on spine and possibly on liver. I am not sure that easy to find stats amber

They are speeding up rads to 4 weeks now and then chemo. Will do more scans etc as are deciding on what kind of chemo (may be in patient).

I haven't asked about size etc of nodules - also was told prognosis is years rather than months and there are various treatments can do but won't ever go. Was this the kind of talk you had rwu (lovely to meet you - was also dx when dd2 was 3 weeks old) or topsy.

smee good luck tomorrow and i4k hope appt went ok.

Gig, argh, this is the peril of a brain that doesn't store people-info. I would demand a refund on it, but I can't find the form where I send mine back for a replacement.
Ask your consultant about the Jagged1 trials. It's the mechanism by which it gets into the bones and they are finding ways to block it. Also check for Cyberknife technology where you are for zapping other bits v effectively.

Might be worth asking about early stage trials for salamander egg extract, since it stops cancer in its tracks.

They are getting close to those 'holding treatments' that will mean people still have it, but it can't progress. If they can get the trials of those set up, there's a chance of a long term answer there too.

Yep gig , I was told it won't go away but treatment can keep it from spreading further or growing more .
I too was given an outlook in years rather than months . But do understand that this is just median survival rate , and we can (and do) go on for much longer than that .
Also the longer we go on for , the better treatments are developed .

Thanks Topsy and amber- will note all that.
Have been on net which is a mistake as nothing positive or in date (1999 study anyone?).

step away from Dr Google! gig - what have we TOLD you?!!?

Stay away from the net , apart from the links amber sends you . She finds great articles .

Amber I have just googled the salamander thingy , that's amazing !
I have a diabetic friend who is being given an extract of salamander saliva , and says its doing her a lot of good .
Salamanders must be magical creatures !

If you listen to Dr Google I should have dead years ago ...

tsk gig - google is bad idea...

Gig, Google is not your friend. As you note, most research on Google dates from the stone age where they were still hitting cancer with a club and grunting a lot. The whole field's changed in the last few years and there are zero statistics available for long-term survival on the new treatments, as people haven't died yet and may not for bloomin' decades (er, if you see what I mean)

At the risk of you all thinking I am some sort of mad, lurking, stalking, troll-like nutball, I have another story to add to Gig's list of positive stories.

And in case you're wondering (I would be), yes, the friends I have told you about are all absolutely people I know in RL - if it seems odd, its just that I'm quite old, and have met lots of people, and therefore have collected a lot of stories to tell

My best mate's ex boyfriend had lymphoma a few (9? 10?) years ago. Stage 4, and all over his abdomen: liver, guts, you name it. He responded well to chemo, which was pretty amazing stuff even back then, and has been in remission ever since. They don't consider it 'gone' as technically, Stage 4 doesn't go but there is no sign of it, and he is fine. I know its not sarcoma, Gig, but there are some parallels - not least that he was in his late 30s when it happened, and therefore young and in that group of people who tend to respond best to chemo. Like you, and like Topsy, and definitely like RWU (who won't remember me, but whom I remember and whose 'voice' I am very happy to 'hear' again . )

There are so many stories like this that people don't get to hear, and it seems so important that they get heard, iyswim.

yay elibean thanks for that - you are quite right-these stories need to be told.
Uh oh, off to piano with ds.

Thanks elibean . I am going to take some cake to the naughty step now for looking at google.

Thanks for positive story elibean definitely one for sharing!

Need more messages like that eli , add away !

Gig, - was your therapist helpful this afternoon - I hope you were able to have a good talk with her. As everyone says, stay away from Google, it is largely rubbish - remember anyone can post things on Google, they don't have to have any kind of credentials. Your going to feel as if you've biffed about with a baseball bat today - but Eli's story is a good one, - I know of people in similar situations to her friend, - there is lots they can do to keep the bastard firmly at bay.

l4k - I hope your appointment went well today.

She was helpful. However , I think Shock and google kicking in as now lieing in bed - I can't sleep, I feel sick and just can't process any of it.

I was reasonably calm this morning so think shock has set in.

Holsten- I'm moonwalking too, although I'm limited to the half moon by my MDT, but I'm taking 5 others with me so between us we're doing 3 marathons. I am busy sequining bras tonight
Will Be back.... Football practice to get to!

Gig - glad you're back in the comfort of your own home and getting some rest. You're bound to be reeling from the shock, so be kind to yourself and take the time you need to start getting your head round things and keep talking to everyone here so we can help you get through this xx

Sorry I am not caught up at all (I have only be away from 24 hours )...Ds was admitted to hospital yesterday evening with extreme pain, I just couldn't control it at home He is doing much better today, after good dose of NO2..... We had a bad night at hospital, finally getting him stable enough (which sounds more dramatic than it actually was) to go to a ward at about 2.00am, then he was awake again at 6....lucky him cos he actually slept, although the zbed was very comfy...adrenalin (sp?) worry and other children crying kept me awake. Will try and pop on tomorrow, but will have to see how ds is doing.

Wanted to wish Smee good luck for tomorrow, give my love to all, and say even if I am not here you are all in my thoughts.....see if you can get to thread 24 before I am back....there is a challenge.

Sparkle - hope your ds is soon feeling better and you manage to get some sleep tonight xx