Australian Sisters
Comments
-
Lolalee - yes they had me up and walking to the bathroom (only about 4 steps) last night, about 3 hours after I came back from surgery. I've been up and walking around the corridors today. They also took me down for a CAT scan. Hopefully it will all come back negative. It should. If lumpie didn't make it out into the lymph nodes, then I doubt it will be found anywhere else. Here's hoping anyway. I should be discharged tomorrow, so only 2 nights in hospital. I guess we all react differently, and as Ariom says I think it's the reconstruction that makes the difference. I was only in surgery for about 2-3 hours, not the 6 hours it would have been for an immediate reconstruction.
Ariom, I must have missed you getting an infection (I guess I was too focused on myself). That's scary, just from a bra? Take it easy and get well soon. I hope it doesn't flare up again, but I've heard the same, it is quite common. If it does they can just give you some stronger antibiotics.
0 -
Thanks everyone, I hope it doesn't flare up again. I am not stopping the antibiotics, I should have said they run out tomorrow. I see the surgeon on Monday morning. I may give him a call and ask if I should go to the local Doctor for another prescription. It really isn't bad, but I have been so lucky with the surgery and the fast recovery, I just don't want anything to stuff that up!
0 -
Liv, I would never leave home without my dulcolax! I always wonder if I were stranded on a island without my dulcolax, what would happen? I cannot go without some help and have been like this for years. I have tried all manner of diets but nothing really helps. I found that unprocessed bran did help but who whats to eat "laying mash" which is fed to chickens, for ever. I do have checks every 5 years but may need to step up. I hate drinking water and really need to force myself as I am a coffee gal.
Jenn, hope all tests went well and you are having a lovely afternoon tea somewhere. I head back to work next week so am making the most of my holidays. The linen cupboard got a really good cleanout, can't believe the amount I have collected over the years and eBay has not helped with the all the lovely French monogrammed linen on offer. My latest purchase was a top sheet and matching pillow cases which are beautifully embroidered and very old. A dream to sleep with in the summer. I am such a hopeless textile addict.
Ariom it sounds like you have the infection under control. It would be weeping if things were going bad. Sounds like your bra was coated with some chemical when manufactured. I heard recently that formaldehyde is used extensively on fabrics during manufacture. It seems almost impossible to buy pure cotton underwear anymore.
Hope everyone is having a good day.
0 -
Decided to call the Surgeon and ask him what to do. He said that if the redness has subsided and it isn't weepy, sorry TMI, that it will be ok till I see him on Monday. It has definitely improved, I just want it gone...now. I never was good at waitingLOL
0 -
Ok. So from my appt today:
1. Onc happy to yank my port out immediately after my last herceptin on 15 February. She said once she orders it they usually book you in within two weeks.
2. Asked about the CYP2D6 blood test that tells you if you are a good or bad metaboliser of Tamoxifen. Onc said she "doesn't believe it" and yet again told me she is "conservative". I argued the point that "I" am not conservative and am concerned that I am not metabolising this stuff since there is a theory that women who don't metabolise it well don't get hot flushes - and never had one yet! So she said she would order the test if I researched and found out how to get it in Australia. Easy peasy!
Checked online and found the pathology company that do the test in Aus. It costs $100 not covered by Medicare and the are multiple collection centres around the country. So I've emailed the details to my nurse and hopefully I can pick up the form tomorrow when I'm there and then get the blood test next week. If it shows that my body doesn't metabolise Tamoxifen well then I'll have to consider using Lupron to shut down my ovaries and then take an AI. Seems silly to keep taking Tamoxifen if it is only "maybe" working and a new research paper out of Mayo in the US really indicates that testing should be done. I'll copy it here for you guys.
Ability to Metabolize Tamoxifen Affects Breast Cancer Outcomes, Mayo Clinic-Led Study Confirms
26 December 2012 Mayo Clinic
For nearly a decade, breast cancer researchers studying the hormone therapy tamoxifen have been divided as to whether genetic differences in a liver enzyme affect the drug’s effectiveness and the likelihood breast cancer will recur. A new study by researchers from the Mayo Clinic Cancer Center (http://mayoresearch.mayo.edu/mayo/research/cancer-research/contact.cfm) and the Austrian Breast and Colorectal Cancer Study Group (http://www.breastinternationalgroup.org/Membership/BIGMembers/ABCSG.aspx) provides evidence that genetic differences in the enzyme CYP2D6 play a key role in how well tamoxifen works.
“Our findings confirm that, in early breast cancer treated with tamoxifen, genetic alterations in CYP2D6 lead to a higher likelihood of recurrence and death,” says Mayo Clinic (http://www.mayoclinic.org/) oncologist Matthew Goetz, M.D.,(http://mayoresearch.mayo.edu/mayo/research/staff/goetz_mp.cfm) lead author of the study in the journal Clinical Cancer Research.
In the clinical trial, Dr. Goetz and his colleagues studied the rates of cancer recurrence and death in two groups: postmenopausal women with primary estrogen receptor-positive breast cancer who received tamoxifen for five years and those who received tamoxifen for two years followed by the aromatase inhibitor anastrozole for three years. Anastrozole is a breast cancer drug whose metabolism does not require the CYP2D6 enzyme.
The study showed that women who were born with genetic alterations of CYP2D6 that abolish the enzyme’s critical metabolizing activity and who took tamoxifen for five years had recurrence of breast cancer, or died at a rate 2.5 times higher than women with normal CYP2D6 enzyme activity. Women with intermediate levels of the CYP2D6 enzyme had rates of recurrence or death 1.7 times higher than women with normal CYP2D6 activity. Importantly, Dr. Goetz notes, that genetic alterations in CYP2D6 did not affect the likelihood of recurrence or death in women who switched to anastrozole after two years of tamoxifen.
“Switching from tamoxifen to an aromatase inhibitor may be one reason for the discrepant studies surrounding CYP2D6 and tamoxifen -- as information about whether a patient took an aromatase inhibitor after tamoxifen was not available in most of the prior studies,” says senior author James Ingle, M.D., of Mayo Clinic, an expert on hormone therapies for breast cancer.
A blood test can determine whether a woman has alterations in CYP2D6 and predict how efficiently her body will convert tamoxifen to endoxifen. Approximately 5 to 7 percent of European and North American populations are considered poor metabolizers of tamoxifen.
“The results of this successful high-level international research collaboration are an important step forward in our quest to individualize breast cancer treatment and provide tailored care to women with breast cancer,” says Michael Gnant, M.D., professor of surgery at the Medical University of Vienna and president of the Austrian study group.
So what should a woman do if she is unable to effectively metabolize tamoxifen into its most active form? Dr. Goetz believes that the current recommendation of switching from tamoxifen to an aromatase inhibitor is likely to result in the greatest benefit in women with decreased CYP2D6 metabolism. For CYP2D6 poor metabolizers, avoiding tamoxifen altogether and starting out with an aromatase inhibitor may be the best approach, he says.
Dr. Goetz’s group is working with the National Cancer Institute to develop endoxifen as an alternative to tamoxifen. If women can be given endoxifen, the active part of tamoxifen, it won’t matter how tamoxifen gets metabolized, he says.
The study is partially funded by the National Institutes of Health, co-authors include Vera Suman, Ph.D.; Tanya Hoskin; Mary Kuffel; Stephanie Safgren; Carol Reynolds, M.D.; Matthew Ames, Ph.D.; and Richard Weinshilboum, M.D., all of Mayo Clinic; Martin Filipits, Ph.D.; Raimund Jakesz and Margaretha Rudas of the Medical University of Vienna; Richard Greil and Otto Dietze of Paracelsus Medical University, Salzburg, Austria; and Alois Lange and Felix Offner of Medical Hospital Feldkirch, Austria.
regards Jenn0 -
jenn definitely get the test, thats a no brainer to me, your onc sounds conservative.
go with your gut feeling, it could well save your life. drastic statement but it could. just imagine taking a serious medical medicine and your body isnt absorbing it, it does happen, my body stopped responding to my initial chemo after 4th shot so why woouldnt other medications be the same.. go for it.
now im picking up my car keys and getting down to the park for my power walk right this second.!!
xx
0 -
Lol Liv, nothing next, i hope. i have had enough, i think i will go awol lol. yea, days of our lives for sure, i cant say young and the restless as i am not young now and the only restless i get is my dam legs at night, gosh that drives me nuts. so hope fully everything will get back to normal, what ever that is now lol
0 -
Sounds complex Jenn, but I guess in your line of work you are up to speed with the latest developments.
0 -
Jenn - Thank you for pointing out the Tamoxifen study!
I am to start on Tamoxifen in six weeks as soon as I finish radiation but now I am going to schedule an appointment with my oncologist to check this out. By my age I should be post menopausal but it isn't clear (I had a Mirena for birth control until a month ago and it stops periods). The plan was Tamoxifen for a year "to let my body settle down" and then an AI. However, maybe the Tamoxifen is a waste of time!
I have learnt so much from you wonderful ladies. Keep up the great work.0 -
Hi Jenn, yay on getting your port out soon and good that you raised the Tamox issue with your onc.
Chrissy, no I have still not found my glasses!
Tomorrow will be two years since I started chemo :-(.
I will see my onc on Monday. Looking forward to it as he is very nice ;-).
I read all posts but am having trouble keeping up with all the newbies. However, I wish everyone well.0 -
Hi all
Friend posted this on Facebook. It really has nothing to do with anything. Can see my Gus doing this - Chrissy will understand.
Big hugs and hope everyone who was having tests or treatment today are doing well.
0 -
Lol Aly.......yup I can see Gus doing that too......lol.
Yay Jenn not long now for your last Herceptin and port removal!! I bet you are looking forward to that.
Have a good night all!
Love n hugs. Chrissy0 -
More good news to spread around - a joy shared is a joy doubled.
I've just got the results from the chest and abdomen CAT scan done this afternoon - two and a half pages of polysyllable words with a one line conclusion "No evidence of metastatic cancer" - much (slow and careful) happy dancing going on. Now all I've got is the bone scan next week and I'm free and clear.
Jenn - I can't believe your onc. I'm a firm believer in doing your own research and making sure you understand exactly what's going on and the pro and cons of suggested treatment, but it sounds like you're having to argue with your onc to get something done that any on-the-ball medic should have known about and done themselves. The study you quoted is right smack bang in the middle of an oncologist's field of expertise. To just say "I don't believe it" is unbelievable (pun unintended). Can you not find a new oncologist? Anyway, getting the test done is no-brainer. $100 for portential life-saving knowledge is a cheap price to pay.
0 -
Hello everyone
Sorry I haven't been posting much lately, but I've been reading. Work is crap and is getting me down, but I'll get over it :-)
I'm so happy for all the good news on this thread at the moment, Jan your view is lovely, and I had to cringe when I read the remark made by the volunteer about having a holiday. Even for a new person who might be young, that's a pretty silly thing to say - who on earth comes to a hospital for surgery and thinks they are having a holiday??!!
Jenn - yay for the end in sight! I had my last Herceptin a year ago next Thursday and my port out in early Feb. It's a lovely milestone to reach.
Apart from work, which has gone from bad to crap, I'm going well, photography is super busy and that part of my life is a lot of fun. I'm feeling healthy and active and a year out from Herceptin I find I don't worry about bc coming back very much at all.
If only the photography paid well enough to live on I would be the happiest girl alive :-)
Take care everyone, I think of you all. Each and every one of you is in my thoughts and prayers.
Trish
xoxo
0 -
Jebdra, What wonderful news for you. I couldn't be happier. Isn't it just the most amazing relief!
I didn't understand a word of my Pathology report till I reached that line too. Congratulations! take care and rest now. I have everything crossed for a great outcome for you.
Trish, I was wondering where you were. I am so sorry that you are having problems with work that's making you unhappy. It is awful when work isn't making you feel fulfilled, because you have to spend so much damn time there. You are really fortunate to have your photography though. I do hope things get better for you in the work arena.
When I read the milestones you girls have passed, I am truly in awe. You have been through so much, over an extended time, and you are here helping the new ones along, and hoping for good news for everyone. This really is a very special place. Thankyou!
0 -
Ariom, do you live anywhere near the Kew area, mont albert, i have an uncle who lives there, i have been there numerous times, not for a long time tho. I used to go shopping in targets, is that stiil around. i would walk there, he lives in mosell street. he is an idiot, i mean a funny one, acts the goat constantly. He used to drive around the round abouts about 5 times, being a right egg. you go shopping with him, he would embarasse you by putting on ladies hat and saying, do you think this will suit me?? he is nuts, i used to disapear quick and try pretend i did not belong. it was fun. his daughter Lisa used to go , oh DAD. she married now, got three kids and is a criminal lawyer and her hubby a property one. uncle gary is school teacher and his wife a principal of a girls school, but has retired due to hip problem and his son Jon is over in perth and is musician for some music arts school. He is very talented guy, had master of arts at 13 and his doctrate in Music at 21 and he used to work in The melbourne school of arts. Uncle gary is also a music teacher and english. so they have all been career minded, lisa was more into the law stuff than music.Have not seen them for so long, Aunty Yvonne also had breast cancer and radiation and went 5 year treatment. one day would love to get back to Melbourne and visit them and they can meet hubby.they not met him yet. we been married for 5 years, so one day. better go and shut up and do some work. lol
0 -
Hi midnight, I used to live not far from Kew/Mont Albert, it is a beautiful part of Melbourne.I am not sure exactly which shopping area you went to, but there ar Target stores everywhere now.
I lived in Williamstown, abeach suburb close to the City. We moved here, to semi retire in Paynesville in June 2012. We are 300kms from Melbourne now, and live on a magnificent lake where I can sit and watch the weather come in from the ocean on the other side of the dunes. It is a magic place, we just love it. The only part of Melbourne I miss is not being a few minutes from my Daughter. We talk every day, and she has fallen in love with this place now after spending 10 days helping me out after my surgery. I can't wait for Easter when she will be back.
Your Uncle sounds like a fun guy, but also very intelligent. I bet you had a lot of great times with him and his family. Sounds like they have all done very well in their careers too. Jon has done very well at a very young age. I have a friend in Perth whose Daughter manages a large, new events facility there.
I remember having a similar experience with a much older cousin, I was from Scotland and had no other relatives other than my Mum and Dad, so when my cousin came to Australia with his wife I was thrilled to have a young relative here. He used to do silly stuff in shops too, where I would pretend not to know him.
I worked in the entertainment industry here for many years too. Had a husband in TV and Radio. I have had a pretty diverse working life, also a long career in the beauty industry, and then just to finish up, the last 12 years I worked for an International Airline. We used to fly in to Auckland every day on the way to L.A. I didn't ever spend much time in NZ, but loved the parts I have seen.
If you ever make it "across the pond" to visit, let me know, I'd make the trip down to have a catch up with you for a coffee in Melbourne!
Great chatting!
0 -
My Uncle's name is Gary Bradley and his son Jon Bradley and the big mall i used to go to, i had to walk across these three parks and up a big hill. i cant remember the name of it darn it. yes i will certainly do that meet you for coffee. Hey it was Box Hill shopping mall, Ariom and the other one was Blackburn shopping mall, my uncle used to go to Blackburn Baptist Church and also Kew Baptist. he was the music director there and also the choir master, used to write big church musicals, contata"s and Jon used to be the pianist. I do not know where they go now.
0 -
Hi Midnight! I know those shopping malls! I have a girlfriend who lives one suburb over, and we have been to Blackburn for lunch and shopping. You know how drinkers know all the Pubs, well, I am a retail therapist who knows where to shop!LOL
Not familiar with the Baptist Church there though.
0 -
Yea i used to love shopping in Boxhill. at targets lol, would spend the day there, and then would have a fashion parade when i got back to My uncles place as i stayed with them, they have house mate, Jo, she also a teacher and she lives with them and helps with costs etc, like a sister to them, not a well women apparently of late, gary keeps me informed by emails, not for awaile tho. he goes over to Numea to teach english 3 times a year to 8 and 10 year olds , they take stationary and heaps of stuff over to the kids, i think they do it thru the church mission and music too. I think he goes more often than Jo does now. Yvonne does not go, she not keen on travelling, a home body that one.. they are very active people. But shopping in melborne is sooo good.
0 -
Just wanted to ask if anyone has a weird sensation after Mx when they drink hot or very cold liquids. I have written it on my list for the Surgeon on Monday.
I found an old thread here where it seems to be quite a common sensation, but hasn't been updated for a couple of years. No explanation for what it is.
If you don't know what I mean, it is like when you swallow you can feel the liquid spread into the side of the surgery on the way down. It sometimes takes my breath away, not unpleasant really. Just weird
0 -
Sorry Ariom, can't help you, I had every sensation under the sun but not that one. Can't even begin to think what would cause that. seems very strange. How is the burning under the arm, still there?
0 -
Ariom, I remember having weird sensations when drinking, such as cold or hot when the fluid was going down, or just after it was going down. Is that the sensation that you mean?
Cheers
Mandy
0 -
Hi Lolalee, very little burning under the arm now. Thanks for asking! In fact all the sensations are diminishing now. It's a bit like when the Dentist's anaesthetic is wearing off now. A little numb, pins and needles, a little burning. All totally manageable, just weird. The big swelling where the sentinel node was taken has flattened out, but I still have the slight feel of a stretched rubber band that goes from my chest, under my arm and round to the back. I feel that considering it has only been three weeks this is all good.
0 -
Yes Mandy! it is so strange, isn't it. I must ask Surgeon, but I wonder if it is because the insulation from that side is gone. Not sure, but wonder if BMX get it on both sides.
How are you doing?
0 -
Arion, It did feel weird initially, and I dont know why. Perhaps some of the nerves are confused and they take a while to settle down. Let us know what the surgeon says.
I am going pretty good, still no symptoms, no pain from the bone mets, no nausea and no headaches, but I am a little short of breath so I will ask the doctor to see how my pleural effusion is going. I have always had episodes of shortness of breath before and that was due to scarring of the lung due to radiation. I always look "too healthy" and feel it too, but I think we need to be our own advocate.
0 -
mandy you are amazing, lets hope you dont have any symptoms and continue to look and feel ok but as you say 'we need to be our own advocate'.. mandy when you were diagnosed with mets did you have many symptoms with the three newbies all at once? the mind boggles.
xx
0 -
liv, no, not really. I had symptoms but not really related to my mets. I had an arthric right knee which kept waking me up at night and I googled bone mets, and symptoms were pain at night. It turned out that my right knee was arthritic when the breast specialist followed it up with a bone scan, however bone mets were discovered in my LEFT femur and my skull instead. I still dont have any pain, so no radiation recommended till I get pain. As I said before. I have been short of breath for a few days or a couple of weeks every now and then, but it went away, and chest xrays were done when I requested it, however, I got a bit used to it, so I didnt bother the last time. When it persisted for over a month and didnt go away, I went to ER in my hospital and they did an ECG and then chest xray, which showed pleural effusion. I still looked "too healthy" and thought that it may have been my imagination re shortness of breath.I almost went home without the xray, that is how good I looked and felt. However, I stayed in hospital for 10 days with an underwater seal drain and when they took CT and MRI, that is when they broke the news to me. Like I said, I really dont have any symptoms, and can still breathe, but feel like I cant fully inhale properly, I hope I havent ranted and raved too much, but I have always been asymptomatic.
0 -
mandy, no you certainly have not ranted or raved and who cares if you do.
you are wonderful and always appear as you say, so well that i sometimes have to have another look at your stats.
why are you only on xeloda and not another in combination. my onc says xeloda from all research and trials that it works much better with a combination & thats why he put me on navalbine for the nodes on my chest which have shrunk on the combination.
you poor thing having to suffer with a pleural effusion and finally after you going to emergency they listened to you, hear this sort of thing over and over, its so infuriating that you had to suffer so long.
apart from a pleural effusion, xeloda can also make you out of breath.
http://www.chemocare.com/chemotherapy/drug-info/Xeloda.aspx.
((hugs))
0 -
Liv, Thanks for your information, I will do some research on the chemo combination tomorrow as it is midnight here and my brain is foggy. Thank you so much for this info as I have wondered about that. sometimes I wish that I had symptoms, because I feel like this is so surreal. Anyway, I hope that you remain NED forever. It just feels like a dream to me and someone will wake me up soon. lol
0
