Hi Everyone,Im currently taking oral chemotherapy due to more bony mets. Thank goodness it hasn't spread elsewhere. My tumour count flew up to 232, having not gone down since October last year, very frustrating. My oncologist has referred me yo Peter McCallum hospital and I'm due to hear from a doctor this week to discuss what is available for me. Does anyone have advice about what is involved with a clinical trial? It would be fantastic if someone has experience, or is involved in a trial.Cuddles, Trace

@Tracey_B I'm in total agreement with @Kmakm. You are incredibly talented. I love the painting you posted. I can almost smell the eucalypts when I look at it! Rosie

Just saw you live in Orbost, bit far from Melbourne for the exercise trial! My mum and dad lived there in the 50s as dad worked at the butter factory and so my 2 sisters were born there but not me. Their house is still there but i can't remember the name of the street. It's a very pretty area.

I don't have any of that experience but I wanted to send you a hug

You're a champion Tracey!! What a so and so that you're on a bumpy road at present - here's hoping that a clinical trial is just what is needed and will settle things Take care and look forward to seeing another of your paintings on here, when you're up to it! xoxo

Clinical Trial | Online Network

Anonymous
7 years ago
Thanks Paula, that's lovely xxxx
mum2jj
Member
7 years ago
Hi Tracey_B, I’m sorry I can t help with the trial stuff, but from what I have read they are usually of great benefit. The girls who do know about them seem to be giving you good advice. Your painting is just lovely.
Sending you a big cyber hug.
Paula xxxx
iserbrown
Member
7 years ago
Thanks @Tracey_B fingers crossed that it is something wonderful and very little if any side effects! And cuddles right back to you xoxo
Anonymous
7 years ago

iserbrown said:

Artferret said:

The other one is called Ex-med cancer exercise trial and is being run by Prof Prue Cormie at ACU and is open to anyone who has had any cancer, any stage. You must have finished chemo or rads, so you are eligible for the first year after finishing your treatment. Being on hormone therapy is ok.
Hi! @@Artferret

I start the Ex-med cancer course in May. I was on the waiting list for Feb but I was too unwell to do it then. Have had Dr approval so look forward to it. For me, I want to be able to put my left sock on without turning myself inside out or getting hubby to do it and I want to get movement back into my left arm, in that be able to put it up and over my shoulder...........I look forward to it and hope that it helps with the aches and pains in general. Today I had a lymphatic drainage massage and feel like crap, which is how it rolls but always feel better for it the next day. There's no doubt about it this BC keeps giving! The fatigue!!

Take care

Hey Iser and Artferret, that's fantastic info. There's a doc at Peter Mac who is willing to offer me something. Will hear some time this week, so will let you know what transpires.
This cancer is the gift that keeps giving, life is never normal again, so we ave to create a new normal. Just remember that we now choose how we face our battles, and I think that we all do a pretty damn good job of it.
Cuddles right back xxxx
iserbrown
Member
7 years ago

Artferret said:

The other one is called Ex-med cancer exercise trial and is being run by Prof Prue Cormie at ACU and is open to anyone who has had any cancer, any stage. You must have finished chemo or rads, so you are eligible for the first year after finishing your treatment. Being on hormone therapy is ok.
Hi! @@Artferret

I start the Ex-med cancer course in May. I was on the waiting list for Feb but I was too unwell to do it then. Have had Dr approval so look forward to it. For me, I want to be able to put my left sock on without turning myself inside out or getting hubby to do it and I want to get movement back into my left arm, in that be able to put it up and over my shoulder...........I look forward to it and hope that it helps with the aches and pains in general. Today I had a lymphatic drainage massage and feel like crap, which is how it rolls but always feel better for it the next day. There's no doubt about it this BC keeps giving! The fatigue!!

Take care
Anonymous
7 years ago

Artferret said:

Just saw you live in Orbost, bit far from Melbourne for the exercise trial! My mum and dad lived there in the 50s as dad worked at the butter factory and so my 2 sisters were born there but not me. Their house is still there but i can't remember the name of the street. It's a very pretty area.

Hey Artferret, what a small world, eh. I live 2 blocks away from the butter factory, Orbost is a lovely place to live. We live in a little old house that we've renovated. We love it there and have been there for 30 years.
Anonymous
7 years ago

Artferret said:

Hi Tracey_B
I'm currently part of 2 medical trials, one through Peter Mac and the other through Australian Catholic Uni. Both were suggested to me by my surgeon. The Peter Mac one is the EXPERT trial which is for early breast cancer hormone positive people and is wanting to determine whether radiation is necessary for this group. You get randomized into one of two groups, rads plus hormone therapy or hormone therapy only. I got placed in the hormone only group. In the first year you are checked over at 3, 6 and 12 months by your study doctor which for me is my surgeon and you fill in a questionnaire each time. After that it's every 12 months and the questionnaires last for 5 years. It's a 10 year trial. I gather i just have the yearly mammogram which for me will be in July even though the one year mark for the trial is end of October. I'll have to ask that when i have the 6 month review end of this month.
The other one is called Ex-med cancer exercise trial and is being run by Prof Prue Cormie at ACU and is open to anyone who has had any cancer, any stage. You must have finished chemo or rads, so you are eligible for the first year after finishing your treatment. Being on hormone therapy is ok. This one is wanting to determine whether moderate to vigorous exercise helps in decreasing the recurrance rates of cancer...any cancer. It's a 3 month gym program overseen by an exercise physiologist. The program is developed around what you want to achieve so for me i wanted more cardio and weight bearing.The catch is it's only available in Melbourne. It doesn't cost you anything. You may be eligible for this. Check with your doc when you're at Peter Mac. I'm just about finished (Friday week) and it is the best thing i have ever done. I feel so much fitter and i feel like i have control back in my life again. The next one for this year starts in May or June i think.
Trials are a good idea but you have to be totally comfortable with what's involved and know that it's going to be of benefit to you. Like with the EXPERT trial i had to know that i was totally comfortable with the idea of being in the hormone only grp because if i couldn't be there was no point being part of the trial as there is a small risk of it having a higher rate of recurrance but i figured on the remote chance of that happening i still had rads up my sleeve. Also you can back out at any time. I was also part of a very small trial just before surgery with a drug called propranalol (i think!) which is a beta blocker and is designed to calm you down blood pressure wise. Whether i had the placebo or not i don't know but i have to admit my BP did stay fairly steady albeit high as i was already stressing out major! Can't remember how long that one was running for. 5 years is ringing a bell. Hope all this has helped. Cath xx

Awesome info thanks Cath, makes me more comfortable with it all. If it helps others with their future treatment it's a positive thing to participate in. It has helped heaps xxxx
Artferret
Member
7 years ago
Just saw you live in Orbost, bit far from Melbourne for the exercise trial! My mum and dad lived there in the 50s as dad worked at the butter factory and so my 2 sisters were born there but not me. Their house is still there but i can't remember the name of the street. It's a very pretty area.
Artferret
Member
7 years ago
Hi Tracey_B
I'm currently part of 2 medical trials, one through Peter Mac and the other through Australian Catholic Uni. Both were suggested to me by my surgeon. The Peter Mac one is the EXPERT trial which is for early breast cancer hormone positive people and is wanting to determine whether radiation is necessary for this group. You get randomized into one of two groups, rads plus hormone therapy or hormone therapy only. I got placed in the hormone only group. In the first year you are checked over at 3, 6 and 12 months by your study doctor which for me is my surgeon and you fill in a questionnaire each time. After that it's every 12 months and the questionnaires last for 5 years. It's a 10 year trial. I gather i just have the yearly mammogram which for me will be in July even though the one year mark for the trial is end of October. I'll have to ask that when i have the 6 month review end of this month.
The other one is called Ex-med cancer exercise trial and is being run by Prof Prue Cormie at ACU and is open to anyone who has had any cancer, any stage. You must have finished chemo or rads, so you are eligible for the first year after finishing your treatment. Being on hormone therapy is ok. This one is wanting to determine whether moderate to vigorous exercise helps in decreasing the recurrance rates of cancer...any cancer. It's a 3 month gym program overseen by an exercise physiologist. The program is developed around what you want to achieve so for me i wanted more cardio and weight bearing.The catch is it's only available in Melbourne. It doesn't cost you anything. You may be eligible for this. Check with your doc when you're at Peter Mac. I'm just about finished (Friday week) and it is the best thing i have ever done. I feel so much fitter and i feel like i have control back in my life again. The next one for this year starts in May or June i think.
Trials are a good idea but you have to be totally comfortable with what's involved and know that it's going to be of benefit to you. Like with the EXPERT trial i had to know that i was totally comfortable with the idea of being in the hormone only grp because if i couldn't be there was no point being part of the trial as there is a small risk of it having a higher rate of recurrance but i figured on the remote chance of that happening i still had rads up my sleeve. Also you can back out at any time. I was also part of a very small trial just before surgery with a drug called propranalol (i think!) which is a beta blocker and is designed to calm you down blood pressure wise. Whether i had the placebo or not i don't know but i have to admit my BP did stay fairly steady albeit high as i was already stressing out major! Can't remember how long that one was running for. 5 years is ringing a bell. Hope all this has helped. Cath xx
Anonymous
7 years ago
That's lovely, thanks Rosie xx