How have things gone this week? To Kathy O and Sueg

[Barney22]

I have picked up that both of you were set to have significant consultations this last week, and I was wondering how things have gone?  You both must be pretty cheesed off at the moment with the limitations of chemo treatments.  Kathy, your short time in remission after going through 2nd line chemo must be truly demoralising.  I'm so sorry if that has actually come to pass.  I'm now on my clinical trial, taking the brown capsules every day to try to prevent another relapse.  As I have no side effects at all I have real doubts that I'm taking anything other than rice flour!  One can live in hope - indeed we all have to do so.  Just watched the very last episode of West Wing - don't know what I will do without it now!  The difference between that fictional world and the current real one is depressing.  

Hope to get some good news from you both.  love jenny

[Silla]

Am glad u doing ok Kathy. Me too, I was thinking about you, 'cause I didn't see your post in a week or so. We need you, God bless u.

[kathy o]

Hello,
As usual I was confused about my Dr.appt, it is next Thursday. I am feeling fine enough to hold off until then. I know everybody keeps telling me to go sooner but I have plans right up until the day of the Dr. appt, then I will do whatever they may think I need to, they have said if my ca125 has doubled we will start Doxil (terrified of the hand and foot syndrome) if it has gone down I will have a scan. I have been feeling ok and can control things with meds right now... I am just home for today and am headed out camping tomorrow! Thanks for asking about me and I Pray for you all every day and always Hope for a miracle for all of us!!!

[Barney22]

My trial is of an angiogenic inhibitor which is meant to prevent cancer cells setting up blood vessels to supply their growth and thus curl up their toes and die.  It's designed for women who have already relapsed once who have advanced disease and aims to inhibit disease progression and potentially some reduction in disease.  It's a 50:50 placebo random controlled trial with 90 women due to take part across the UK.  No-one knows whether they are on the placebo or the capsules with the active ingredient and that includes all the medical staff at the various clinics.  My comment was slightly rueful as I feel it's a bit unlikely that I would have absolutely no side effects, but I really don't know that of course, so I'm hoping for the best.  At this point, nearly 4 weeks into the trial I do feel a sense of 'doing something' to help myself which is positive.  After my first lot of chemo last year I found it very very difficult to cope with my anxieties once I was in remission.  I felt as if I was in the sea with no lifebelt and just treading water until the worst happened.  Strangely enough when I did relapse 7 months afterwards I wasn't surprised and don't feel so terrified of it happening again as I have survived another round of chemo successfully.  Does that answer your placebo issue?  What are you researching on it?  Cheers Jenny

Sue - have a really good holiday in Devon.  It seems so odd that your marker is rising and yet you feel well.  When I saw your charity pic I was amazed at your running in that.  Hope to hear from you soon.  Jenny

[gail47]

Hi Sue I am sorry to hear this.  My doctor did tell me yesterday that the Doxil will probably stop working and I will have to start taking another type of chemo. You know he is my doctor but not my real doctor you know.  Everything negative thing he tells me I say in my mine no no no, I rebuke that in the name of Jesus. Everything positive he tells me I just say Thank you Jesus.  Be strong, keep the faith.

[sueg]

Thankyou,I will.
Sue x

[scoutshadow]

I decided to research the placebo effect because I thought that after my operation I would be going into surgical menopause with possible chemotherapy.  My research was initially to do with menopausal symptoms, which to my conclusion only began when women started living beyond the ages of 50 because of the drop in maternal deaths due to childbirth.  Historically, the menopause doesn't seem to exist until the twentieth century. I just wondered how much of it was due to the power of suggestion.  When say for example you go to a site on the internet that list the symptoms there are a lot!  No wonder women suffer.  As it turned out I had bladder surgery instead and no chemo.

Nevertheless, it was so interesting I couldn't stop.  I don't know what I'll use this knowledge for, though I have always wanted to write a novel so you never know!  

Placebo does not just involve the pill taking.  Other factors come to play e.g. the ceremony involved, the trust between doctor and patient, the double blind test (like yours) even the colour and size of the pills.  I don't want to say to much because I don't want to jepardize your treatment.

Just this one titbit though.  There used to be a surgical technique to cure angina.  It involved cutting a mammary artery.  A surgeon decided to do fake surgeries.  Everything was the same except the artery wasn't cut.  The results were just the same i.e. the angina was cured.

Best leave it there.  Take care and I hope all goes well. I think it is wonderful that you are taking part in this trial.  You are truly helping yourself and future generations.  Thank you and good luck.

[scoutshadow]

Hi, I'm sorry to butt in here but I'm currently doing some research into the placebo effect (some of it is quite astonishing).  Barney22 you say you are on a trial and I was wondering if you could help me.  Where you told beforehand that sugar pills were involved? Could you enlighten me as to what the procedure was?  Thanks.

Sueg, have a wonderful holiday in Devon.

Take care.

[sueg]

Hi Jen, Had my ct scan wednesday and I get the results next Thursday.The caelyx stopped working after the third treatment,but I still had the next two just to make sure it wasn't just a blip. My onc is considering surgery if its possible and/or chemo with gemcitabine and treosulfan.I want a break,I've been on virtually continous chemo since my diagnosis last January,my ca125 is rising,but I feel fine and unless its vital I do something quickly,I'm going to put everything on hold for a month and hubby and I are taking the children touring in Devon for three weeks.Its lovely at the moment to wake up and not have to take a pile of pills and to get out walking again without my feet all blistering-and the sun-wow-here in england-wow-it feels good to be alive!
Love sue.