Australian Sisters
Comments
-
Chrissy ..I have "stooped " to getting a pill box ..my only way to remember if I've taken it or not 🙄😋 Would love to see a pic of your Halloween Costumes ..What lucky little girls having you for a grandmother !!!
Trish ..great to hear your back is feeling a lot better ..
We have had so much rain here in Brisbane !! We are building a new home ..so it's really delaying things at the moment...I'm not really complaining when I know so many farmers are so desperate for rain ..Just wish I could blow some of it on their direction to share it ..
0 -
Hello fellow Aussies. I am new here, diagnosed one year ago with extensive bone mets, de novo and occult with no lump, no symptoms and normal imaging. Had Taxol for 14 rounds along with herceptin and perjeta and a single dose of radiation to my worst affected vertebrae. No surgery other meds. One year later I am currently no evidence of active disease with normal bloods and normal tumour markers. I do have quite a bit of damage to the spine with a total of nine fractures, some crush and some endplate. Feeling great, back at work, not taking any meds apart from Panadol Osteo when I have overdone it at work and looking forward to connecting with some people to chat with. Hopefully I will get to know some of you better
0 -
Hi Fosterkittenmum, welcome. What part of this great big country do you hail from? Sounds like you are doing awesome! Hope your love affair with NED lasts a long time. I got seven years with him, eighteen months with no meds but have recently progressed again and am due for another bone scan in December to see if the Femara is working for me.......yep, I'm a bone mets girl too.😁
Right now I'm holidaying in Tassy but due to return home,(SA) on Saturday night.
Love n hugs to you. Chrissy
0 -
FosterkittenMum....Welcome ...it's great that everything is going so well for you ! I'm from Brisbane ..
0 -
Welcome FosterKittenMum, it's great to hear you are doing well, and I wish you many, many happy years with NED!
I'm in Canberra - where abouts are you?
Chrissy - hope you had a fab time in Tassie, isn't it just the most beautiful place??!
I've been doing well, busy with work and photography but happy.
Trish
xoxo
0 -
Thank you Chrissy, Lucy55 and Trish.
I am from South Australia in Mount Gambier, a very pretty place and the weather is glorious here at the moment.
Crossing my fingers and toes for you Chrissy that your scans show the Femara is working.
I am still on my first line of treatment and responding really well, so hoping it lasts a while. My Onc and I talked about frequency of scans last appt as it has been a year now. She wants me to stick with 3 monthly for a while longer and I am happy to do this, gives me some peace of mind.
I have been busy with foster kittens. I have 7 at the moment including two little ones with ringworm which are isolated and three 2 week old babies which are being bottle fed 4 hourly, a job which my 15 year old daughterand I share. I will post some photos when I get a chance.
0 -
Hello! It's so nice to see a thread for Aussies, thanks for starting it, and continuing so long, Trisha-Anne. Greetings to all you generous contributors, too!
Breast cancer treatment is a relatively new hobby for me, as I was only diagnosed in July. Since when I have had a lumpectomy and axillary clearance, re-excision, dealt with a drain, seroma aspirations, and graduated to chemotherapy. So far I've had 3 dose dense AC rounds (4 were planned, but heart function effects were worrying, so the last was canned), and just yesterday had the first of 12 planned weekly Taxol infusions, to be followed by radiation therapy, and maybe hormone therapy for a long time. So a great deal of learning about lots of things I never wished to know. And many incredibly confronting conversations with medical people, who I must say have been very impressive in their knowledge and capability as well as kind.
Trisha-Anne, in your original post you suggested the possibility of meeting. I wonder if anyone has managed that. I'm in southern Sydney, and quite often the Shoalhaven if anyone is interested. I'm a bit old (62) but not too decrepit. And I do have a few interests other than BC.
i notice nobody has mentioned lymphedema recently, and would love to hear if anyone has recommendations for sleeves ( I think, or hope, I will only need to wear one for exercise,etc) and sources of good help. I've found a private lymphedema physio not too far from me and have had one very informative session with her, but haven't had much luck finding any other services or info locally.
Blessings to all the BC hobbyists.
Susan
0 -
Hi Susan, welcome! Yep, being told you have BC sure is a learning curve of information in a hurry......sorry you needed to be learning again but know you are not alone in any of it.
I was dx at 52 and stage IV at 58......am presently a month off 67, not that I feel that old mostly but some days I feel 100......lol.
You asked about get togethers......yes we usually meet up somewhere once a year from a Friday to Sunday. It's really good to meet and put faces to names and you will find that those you meet here tend to become friends for life.
On the Lymphoedema question......there are Lymphoedema support groups on Face Book that you can join and they can give good information on therapists and compression garments. Also check your yellow pages and make some phone calls. I'm not sure if the big hospitals in Sydney have therapist but it may be worth a phone call or two to again ask the question. Lymphoedema is best kept in check so don't leave it as you are at risk.
What are your other interests? I have many so we may just match up with some.😁
Love n hugs. Chrissy
0 -
Fosterkittenmum, yes I'm keeping everything crossed that I don't have to change meds as my body is finally settling into the Femara and the heavy side effects are diminishing.
Oooo I love kittens no matter what the age, they are all so kissingly lovely! I used to have quite a few cats but over the years they have passed so now I just have one big ginger boy.......needless to say, he is very spoilt.
Fostering real little ones is a big job but so worth the time and effort. This is my boy
Love n hugs. Chrissy
0 -
And what a fine boy he is - Chrissie ☺️, thank you for sharing!!
To all, found this interesting - its easy enough to do most nights.
http://www.oncotarget.com/index.php?journal=oncota...
It talks about benefits of 13 hour night fast starting with 7pm on health, diabetes and specifically breast cancer.
0 -
Welcome Susan, although I'm sorry you had to find us. I did the 12 Taxol infusions with my last go round with bc - I found it much, much easier than AC. If you suck on ice, or an iceblock while getting the Taxol infusion, it will help a lot with your taste changes.
I'm in Canberra - not too far from you, and go up to Wollongong every few months when I can - maybe we could meet up at some stage. As Chrissy said, we do have annual get togethers, and we are hoping to have our next one sometime in April, and probably in Melbourne this time. We'll start the planning for it soon I would think.
You aren't old! I'm 61, although, yes there are many days when I feel incredibly old! Somedays at least 90. At the moment I'm feeling pretty good though :-)
Thanks for the link Wildplaces - although it seems to be about using antibiotics to treat cancer as if it's an infectious disease!
It's heating up here - 33 today and tomorrow, Chrissy are you getting hot there too? FosterKittenMum, I've been to Mt Gambier, I loved the blue lake, so unusual.
Trish
xoxo
0 -
ooops Trish,
here is the article I meant to post
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49827...
although the previous link is not entirely unrelated. If you google Michael Lisanti - impressive work in Manchester and yes some old antibiotics and friends are being explored. The role of mitochondria in cancer research seems to be exploding ( aboit time!)with several groups looking at this. It ties in with the proponents of the metabolic theory of cancer.
At the very least I would say we have evidence to support 13-14 hour overnight fasts (and they should ideally start at 6-7pm) in tune with circadian rhythms. So eating late at night and skipping breakfast and lunch is not protective.😉
0 -
Aussie girls I am very interested in a meet up and Melbourne is good for me. I look forward to the dates so I can lock it in. I have found catching up with BC people is beneficial. Not to mention the fun we moght have xxx
0 -
Thanks Wildplaces, good reading!
Ok - shall we lock in Melbourne? Easter is 19 to 22 April, so how about early in April? Say 5-7 April? How does that suit everyone?
Trish
xoxo
0 -
Yes, thanks wildplaces, both articles we very interesting.
Trish I'm afraid I will be missing the next get together as we will still be away. We leave on the 1st March and don't get back until 22nd April. I will really miss everyone and really, really miss not getting to meet the newbies.
My face is looking a bit of a mess right now.......had more skin cancers on it but rather than look at surgery for removal my doc suggested I try the reasonably new chemo in a tube for facial cancers. It's called Picato.....it costs a bomb! There are three little tubes and you apply one, once a day for three days......yep, done that......bloody hell!! The areas that were treated are soooo sore!!. Last application was yesterday so hopefully each day that passes will show improvement......at least I hope so as my second cataract op is next week Thursday and the look of my face I think could prevent that, anyway, keeping my fingers crossed that the healing is quick.
The one at the edge of my eyebrow is the surest even though it is the smallest.
Hoping everyone is doing okay.
Love n hugs, Chrissy
0 -
Chrissie,
This is spooky, 😊 The gel you are referring to is not completely elucidated in terms of pathway but we know it blows up mitochondria, that is how it treats growths. In a strange way it is part of the story that revived some of the interest...
https://www.youtube.com/watch?v=MHWwOF49zzQ
Worth your 10 minutes because it’s logical and if he is correct it will change the way we look at and treat cancer. It’s seems deceptively simple but it is very clever!
I like Melbourne - timewise I am wildly unreliable but it would be great to put faces to posts...
Hugs to all,
😊🌷🐣
0 -
Chrissy ...ouch !!! Hope they heal quickly for you !!!!
0 -
Wildplaces........he poses a really big question doesn't he......interesting and well worth following to see if any trials are being done presently with this area of drugs. Sometimes I think scientists make things far more difficult than they need to be. Thanks for the link.
Thanks Lucy, me too!
Love n hugs all. Chrissy
0 -
Oh Chrissy! Your poor skin must be so sore. I’m off to my skin specialist at the end of Nov so will probably look similar soon.
Trisha-Anne, I would certainly try to come along to Melbourne. I loved meeting you all this year and would really like to spend more time chatting.
Hi Susan, and welcome.
Hugs to all,
Jackie.
0 -
Chrissy, things on the face seem to heal quickly, so I hope this one does. What an awkward spot! I did my whole nose with a different cream last year. Not a good look, but it was much gentler than yours. You’re very brave!
A weekend in Melbourne is always a good thing. I should be just rads by then, so hopefully..... One thing cancer has taught me is to accept being unreliable. It’s my birthday on April Fools Day, so there’s an extra excuse:-)
Thanks for the tip on sucking ice, Trisha-Anne. The taste is depressing so I’ll try that with my second Taxol on Tuesday.
Oh, and here’s Max. Just keeping an eye on things
0 -
I must admit the the nose looks terribly but is no longer sore.....thank goodness.....and there is more improvement each day. I re-read the instructions and they say it should be completely healed in about two weeks so that means about another eleven days......lol.
Jackie, hope your visit to the Dermatologist goes well.
Sue I had Moes(sp?) Surgery about twelve years ago as I had a large cancer pretty close to where this one is.......my doc suggested that it looked like it started right at the top of the old scar....grrrr. Although they are a right pain I am so used to them as I have always had delicate skin. I never tanned even though I suffered through many sunburns trying to but am now in my later years paying the price.
Oh! Your Max is beautiful! I love tabby cats, they just seem to have the most delightful personalities.
I've been thinking........Trish, girls, could I beg for a date in early May so I can come too......please? It's okay to say no as I'm just being greedy here but I do so love our get togethers.
Thinking of you all.
Live n hugs. Chrissy
0 -
Chrissy - ouch! I have a good friend here in Canberra who uses that cream, her face looked almost the same as yours about 4 months ago!
Snap, as soon as I read that you would be away in April, I though - why don't we move it to May? We can't have a get together and not have you there!!!
I had a few people message me about the fires in Canberra. On Friday we had an out of control bushfire that was only 7kms away from where I live. It's now under control and Friday was an "interesting" day. Very windy, very hot perfect bushfire weather. We wouldn't have been in direct danger, as we are about 2kms from the bush fringe in Canberra. We would have just been out with the hose making sure everything stayed wet if the fire had gotten any closer. Lots of upset people though, as it brought back bad memories of the 2003 fires where 500 homes were lost and 4 people died.
Sue - good luck tomorrow xoxo Make sure you start on the ice just before the Taxol infusion and don't stop until it's finished. You will still have some taste change (if it works for you - we are all different) but not as bad as without it.
Trish
xoxo
0 -
Sue from Sydney, my birthday is also April 1, so we will have lots to celebrate :
0 -
@helenlouise special 🎉🎂😎 Nobody boring born that day!
And doesn’t matter whether the celebration is in April or May:-)
0 -
Sue and Helenlouise, you both share your birthdays with my elder brother.........he would have been 75 next April. We always said it was impossible to fool him as he was born a fool.......lol.......and no matter what we did as kids, we could never catch him out.
Even though it's just been a few days, the nose is really starting to look soooo much better. Still scabby but nice and dry so doesn't look too bad at all.
I had my call from the Opthamologist this morning letting me know to be at 5he hospital at 3.15pm on Thursday for my right eye cataract removal surgery......a late one indeed but I was pretty well last on the list when I was being booked so that's okay.....it just means no eating or cups of tea after 9.15am. ☹
Trish even the first week in May would be okay so long as it's not during school holidays in SA as I know Mandy would like to come as well but she has her grand children during the holidays. Depends I guess on what the others think. Also, Aly can't make it this year as she will be over for her brother's important birthday earlier so can't do both.......I for one will miss her.
Take care all!
Love n hugs. Chrissy
0 -
Hi girls!! Well, had the right eye done yesterday and when I removed the dressing to apply the drops this is what I found.
Apparently the anaesthetist hit a small blood vessel hence the black eye......lol.......I'm looking like a prize fighter at the moment.....lol. As you can see, the nose is healing very well and very quickly......yay!!
Still with my sister in Adelaide but I have permission to drive tomorrow as the pupil is not back to normal yet but should be by then. I can see quite well but that will get even better as it heals.
Checking up on everyone and hoping all is going well with you.
Love n hugs. Chrissy
0 -
C'mon Chrissy - Ari socked you didn't he!! LOL I hope it's settling down now. Your nose is looking much better :-)
Well, Bob is going in to see an Ophthalmologist in early December. Once you hit 75 in the ACT you have to have a yearly medical to renew your drivers license. The GP would only give him one for three months. It seems his left eye is pretty bad. When he had his cataracts done about eight years ago, he was told he had macular fibrosis, where the back of his eye was rippling. It wasn't bad enough to do anything about, but was told to have scans every few years to keep an eye on it. Well my darling husband isn't big on "following things up" and hasn't had a scan done since then. Now his eyesight is so bad, he's being forced to "see" about it.
I'm also booked in to see a genetic counsellor in the same week. My GP (who is wonderful) asked me at my last visit why I'd never been referred to one. I told him I didn't have sisters, daughters or nieces, so didn't think it was necessary. He's been putting in a lot of research in bc (tells me that he thinks I know more about it than he does, and wanted to rectify that! lol). He wants me tested, I still have both ovaries and it seems if you have the gene, then not only ovarian cancer, but a higher risk of pancreatic cancer and colorectal cancer. So - I've been referred and triaged and see them in early December.
I've also started to feel extremely tired. I don't think there's anything specifically wrong, I just think that working full time is starting to be a strain on me. I'm thinking about winding back to four days, and if necessary three days. My boss is wonderful, and I can work whatever hours is best for me, they want me to stay as long as possible, and happy to work around me, so long as I'm happy. It's a great place to work.
Trish
xoxo
0 -
Hi all!
Trish, I must admit that I've had some funny looks with the eye and being in a small town I'm pretty sure the rumor mill is working overtime.......lol. yes the nose has completely healed now but I'm thinking I may still need to see the dermatologist........we'll see, I'll give it a little more time to settle. I've been thinking my rescan is in December but it's actually next week...😲 Wow! That three months sure has gone fast.
Tell Bob he's a very naughty boy!! It sounds like he has let this go for so long his eye sight really is in jeopardy! I'll be keeping everything crossed that this is not so and something can be done.
Talking about still having the ovaries and the risks they can still pose is something I think all women with BC need to be informed about.......that's one reason I had the full hyster a couple of years back. Here's hoping you testing comes back clear for the gene. I hear you on the tiredness, I get exhausted just thinking about stuff sometimes..lol..it sure is a bitch getting older and dealing with all the shit that has gone on medically. So glad your boss is on board with you cutting back a bit and maybe that really is the thing to do.
I'm missing the action of taking my glasses off at night and putting them on in the morning.......am I weird or what? It just seems so strange not to have to do it after so many years but don't get me wrong here.......I'm loving being able to see clearly, even more clearly than with the glasses. Glasses only for reading, not even for the computer.........yay!!!
Hoping everyone is doing well and living life to the full.
Love n hugs. Chrissy
0 -
Hi all!
Just letting you all know that today I had my scan to see if the Femara was working.........it's not as there is further progression. I see specialist tomorrow to confirm but it looks like a change of meds to Aromasin.
Onward and upward I say and cancer be damned!
Love n hugs. Chrissy
0 -
Oh Chrissy (((((hugs))))) bugger cancer!
0
