Australian Sisters
Comments
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Carol- I was wrong - I did check with hubby and he didn't have to go back for it to be filled.
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Thanks for the welcome aussie12.
Nice to meet you Lucy55. Bribie Island is a little nicer than Gunnedah. LOL
I have talked to the McGrath nurse for this area mandymoo. They are a wealth of knowledge. Thank you for the suggestion.
I have my chemo start date. It's Tuesday the 10th of November.
Four rounds of Docetaxel/Cyclophosphamide delivered by drip into a vein.
Not looking forward to it at all. Treatment #3 will fall on Dec 23rd. So close to Christmas.
Have any of the Aussie ladies here had an Oncotype test? I had 1 node come back positive and the test was suggested to me.
It's not yet covered by Medicare and costs approx $4,000. If I thought I could guarantee a low score I would gladly spend the $$$$ but fear I could take the test and still came back in an intermediate range. Would be nice to avoid the chemo. Sigh.
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smurfette, I would have gladly paid for the Oncotype test but due to delay in getting advice from oncologist, it was not timely for me to have it done.
I suggest talk to your oncologist about the likelihood of getting a result not indicating chemo (given your positive node) before proceeding.
The worst part of chemo for me was the hair loss. Otherwise it is doable, and it appears you have been recommended a short course.
Do investigate the efficacy of Oncotype though.
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Chrissy. I saw my onc yesterday and my 15.3 had gone down to 211, but he was most pleased with the CEA which was 8, so I am staying on tamoxifen and Xgeva.
I guess I must have cancer running around in my bloodstream, looking for a place to live, as my bones are healed and I have clear organs. Again my onc can't explain the tumour marker thing, but thinks that the CEA is very important, more important that the 15.3.
Do you know anything about the CEA marker, and is a score of 8 really ok.
Hugs to you
Sarah xxxxx
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Hi Smurfette, I had the Oncotype test done as I wanted a prognosis based on my tumour and not numbers punched into the computer. I wasn't given a very good prognosis, moderate to high risk was what I was told. My Oncotype came back at 15 which is low risk. However, as you can see from my profile I still did chemo because there was no other treatment planned and I was 8 weeks out from surgery so felt I couldn't delay any sort of treatment. I was told I'd only do 4 rounds instead of the six that had been planned. Although it's no good looking back I really wish I hadn't done it as I developed lymphoedema after the third round and blame the taxotere. There are heaps of studies on the test try pubmed or nih. The test is used in several countries, the US, UK and Japan to name a few. I worked all the way through chemo and it wasn't as bad as I had feared. Anyway the test gave me peace of mind and even if it had come back high then at least I'd have known to throw everything at it. the 1% benefit of chemo really wasn't worth it for me had I been truly informed of all the risks. Good luck with your decision and I would suggest joining the chemo thread if you decide to go ahead, you will find great support there as well as here.
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Hi Sarah, I havent looked at this thread for a while and I hope that your onc has answered all your questions and put you on a good treatment plan.
When you asked about high tumour markers, it reminded me of my McGrath Breast Care nurse who told me of on of her clients whose tumour markers were 20,000......I have heard of 2000 and3,000, but no higher in the 9 years that I have had cancer. Apparently this lady is doing real well and has hardly any symptoms. I cant remember whether her mets were in the liver or only the bones, But apparently this lady just has extremely high tumour markers due to other health problems I think.
I saw my radiotherapist on Monday and I am just waiting for a phone call for treatment on the lower spine as that is the only place that is not under control. I must admit, that my back pain is starting to annoy me,,,, getting to be about 5 or 6 out of 10, so I am taking Panadol Osteo and that is doing the trick. A couple of weeks ago, it was just a niggling ache, so I am sure the zaps will sort that out. My shoulder has been stable since last years zaps lol.
hugs
Mandy
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Mandy, you put my mind at rest, with the lady's tumour markers. My onc puts a lot of weight on tumour markers. I did not ask him, but he seems to think that the CEA is important. Mine was 8 last week and he seemed pleased. Do you know anything about CEA tumour markers?
I hope your pain decreases with radiotherapy. I haven't had any pain really, the thing that bothers me is my arm. We have just driven from Canberra to Sydney and I wore my compression sleeve, and my arm is not feeling great so I am moving it a lot. I had 29 lymph nodes removed along with my left breast so it's not surprising that my arm is uncomfortable.
Where are your mets? Can radiotherapy kill them, as you say that your shoulder is now stable?
Hugs Sarah
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Sarah, I have lymphedema in my right arm and have a compression sleeve on 24/7. I had all or most of my lymph glands removed in my right arm, but had no problems for five and half years until I went on to Xeloda and the side effects besides DVT is Lymphedema.
I asked my oncologist about CEA and I was told that they do not use that marker as it is mainly used for colon cancer and another type of cancer that I cannot remember, lol.
3 years ago, I had mets in my brain, liver, lungs and bones. I was put on to Xeloda and this reduced the mets in my organs and I became NED in all organs about 12 to 18 months ago. The mets in my bones have also been treated every 6 weeks (supposed to be 4 weekly, but my choice as this coincides with my chemo cycle) with Denosumab. The Denosumab is controlling all of my bone mets ( I had them in my skull, spine, ribs, right hip, femur and left shoulder and humerus etc) Now I only have them in my right hip and left shoulder, and sacrum. All the other bone mets have disappeared.
The mets in the sacrum are spreading quite rapidly for some reason, so not responding to current treatment and radiotherapy will kill the mets in that area (I had radiotherapy to my right shoulder last year and only one treatment has stopped the mets from spreading thereand I am still stable in that area)
My tumour markers have been up to 500 and they are just over 100 at the moment..... I am not worried coz except for my back, I have no pain.... Good quality of life still. I think the longer you live with cancer, the more relaxed and used you get to the disease. It wont be too long before it will be a chronic disease. Meanwhile, I do yoga, Tai Chi, Aqua Aerobics. walk daily and take lots of vitamins. I also enjoy cakes, cookies and biscuits and anything else that takes my fancy as I believe in enjoying life and not worrying. Stress is not good for cancer, so relax if you can and just listen to your body.
hugs
Mandy
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I'm sorry to be the bearer of more bad news (there seems to be so much of it at the moment) I've just been re-dx with bc in my remaining breast.
Yeah - I know it really, really sucks.
I had an MRI in March and it was absolutely clear. I now have a 2.5cm grade 3 tumour with it's own blood supply in my right breast.
I'm ok today - yesterday was a mess. Have just seen my GP and have an appointment to see a breast surgeon on Tuesday.
Being grade 3, I'm suspicious it will come back as HER2+, the core biopsy is being tested for that now, but will take a while to come back.
It's IDC and apart from being grade 3 that's all we know for now.
I just celebrated being 5 years out two weeks ago.
Until I see the bs, and have all those scans, we won't know if it's spread - so keep it all crossed for me girls.
Trish
xoxo
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I'm so sorry to see this Trish...0 -
Trish, I am really really saddened by your news. I will keep everything crossed for you. Many gentle hugs, Kylie xxx0
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So very sorry to hear your news Trish.
Sending love and light. Donna.
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Sending gentle hugs to you Trish
Keeping our fingers and toes crossed for you.
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Trish (((hugs))), yes, it really, really sucks...
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Hi all
Trish sorry to hear your bad news. It must be fast growing if it wasn't there in March. I'm sick of this cancer !!!
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Sorry to hear this, Trish (((hugs))). We will all be thinking of you and awaiting news as it comes in. It is bad enough having to battle battle breast cancer once, but twice just sucks!!!! We are all here for you as this waiting is just sooo terribly frustrating.
Warm hugs
Mandy xxxxx
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Trish, you are a valued member here and I am truly sorry to hear your bad news. Know we are with you every minute as you confront this new diagnosis. We will support you in any way we can.
God bless, Racy xxx,
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so sorry to hear your bad news Trish, you will be in my thoughts for hopefully good news with scans. (((())))
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Trish what a bummer hugs and sending positive thoughts.
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So very sorry to hear your news Trish, keeping everything crossed for a good outcome.
Best wishes Lola
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This little girl was born yesterday, she is with her mummy here called Rosie and her name will be Gypsy Rose. She was born Saturday at 5am. she is very cute.
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Here she is by herself. We have friends taking carer of the horses. ex jockey.
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hi all
Went to the oncologist last Friday to chat about chemo. Have been out of hospital for a little while since getting lung drains out and healing from surgeries. He said the zoladex and femara are actually working so he is shelving chemo for a while.
We will monitor things and I see him again on the 20th. He will ask me to start it at sometime.
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Omg. How cute midnight1327
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Trish.. So sorry to hear your news.. It's just not fair.. at all.. Keeping you in my thoughts and prayers..
Melp.. Have been thinking of you often..
Midnight.. I just love, love both Rosie and Gypsie Rose.!! Rosie looks like a very proud Mum to me :-)
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Nice to hear from you, Melp. And good to hear that Femara is working. It is proven as very effective for ILC.
I hope you are continuing to get tons of support.
God bless X.
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OH Trish, so sorry to hear this about you. gosh what a blow and just outside from a clear mri as well. I am thinking of you. big hugs. xxxxx
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Trish - so sorry to hear this news - are you still taking hormone drugs? I remember a year ago when they found something in my right breast and I couldn't believe that it could be another cancer given I am still on Aromasin. Luckily it was benign.
I really hope you are OK and it's contained.
{{{{{{{{{{{{{{{{{Big Hugs}}}}}}}}}}}}}}}}}}
Sue
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Melp, good news!!
Annette, congratulations!! Gypsy Rose, and Mum, are just adorable
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trish sorry to hear about your new diagnosis... thanks everyone I'm not liking these clexane injections! supposed to prevent blood clots apparently. have been having them for ages now ever since being in hospital.
Taking things one day at a time. that's all you can do
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