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Australian Sisters

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Comments

  • racy
    racy Member Posts: 976
    edited March 2012

    Hi Lyndal, I'm in Brissie. I had my treatment at the Wesley. All is going well for me at the moment.



    What type of shop do you have?



    This whole BC Org site is excellent. I am addicted to it. I check from waking to retiring each day LOL.



    Chrissy, wishing you the very best and NED for your appointment.

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Hi again. Nothing to report. I have an appointment at 11.00am tomorrow with the boob guru, so hopefully all will be revealed and remedied and then I can have some sort of plan about when I will be starting chemo/herceptin treatments.

    I watched the movie yesterday called Living Proof, about the Dr who worked on Herceptin. I thought it might have given a factual account of what HER neu is, etc, instead it was pretty much just a diluted down medi-drama. I watched it with my daughter, and at the end she was very subdued and then she just burst into tears and said that she is terrified for me and herself. She also said she gets angry when I talk about it or hears anyone else talking about it, then she gets angry at herself for getting angry. She really just wants to put her head in the sand.

    Each to their own. I will tread gently with her. xxxx

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Good luck tomorrow Kate.

    I watched Living Proof a little while ago.  Yes - it's a movie - but it does depict how Herceptin was developed.  It does give you a bit of a kick though when you realise how many women die without Herceptin.  We are lucky to have it. 

    I have a friend who has pretty much the same diagnosis as me, and she had just finished her 5 years of Arimidex last October.  She wasn't offered Herceptin (we aren't really sure why) and now has mets to the liver.  She's now finished another round of chemo which shrank the liver tumor considerably and she's had an op to remove the rest of it.  She's coming out of hospital this week.  She's convinced it's recurred because she didn't get Herceptin.
    Trish

    xoxo

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    HI Trish. I agree, I think Herceptin is going to be a life saver. It sure was grim for us HER2+ women before it. Doesn't bear thinking about. I'm so glad to be living in this day and age!

    And I'm with you Racy this is such a good site. I've learnt more about BC here than anywhere else. And.... It's the best possible medicine to connect with others who have walked before you and can share their experiences with us. Give me a good dose of the sisterhood here anyday over anything I've got to swallow or be injected with Smile

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    At work this afternoon with 15mins to go and got a call from the hospital that will be putting in my port on Wednesday. Asked if I could move my appt to tomorrow instead. I had to politely explain that I work and would be unable to change my leave day with 15mins notice! She seemed put out that I wasn't jumping at the opportunity, but did confirm that Wed would still be ok.



    Since they are supposed to leave my port accessed it would have been horrible having all the workings taped to me for 2 whole days and nights, especially since I'm already suffering terribly with anxiety!



    They really don't think about the patient as much as the process do they....



    TO ALL: I agree this is an amazing site...



    regards Jennifer



  • Linda1966
    Linda1966 Member Posts: 441
    edited January 2012

    Thanks for the very warm welcome ladies. Racy, sounds like your about 20 mins away. I live at Camira. Half of my shop is fastfood takeaway and the other half  fresh salad/sandwich bar - couldnt stand to be near it when doing chemo though, everything smelt like calimari and burnt toast to me lol. Was very glad when my sense of taste and smell returned let me tell you.

    Op was at Wesley and chemo at RBH, BS is Dr Ian Bennett who I find to be absolutely wonderful and have the utmost faith in.

    Im a little lost with some of the terms being quoted but am getting the feeling I am one of the lucky ones at the present time. Just on arimedix and though my last lot of mammograms and ultrasounds were dicey with large number of small presumed cysts being found and biopsied Ive got the all clear for another 6 months. Not looking forward to May though for the next lot.

    Jenn, I wouldnt have gotten thru the last 3 rounds of chemo without the port - what a wonderful invention. Even now they have trouble finding my veins thanks to the damage done during the first 3 rounds of chemo and a bad experience with a piccline (damn blood clots). Dont be worried about that little op, from memory its by twilight anaesthetic, pretty sure I chatted merrily the whole way thru and had no dramas with chemo from the day I got it inserted.

    I hope the anxiety eases up for you. Ive gotten through my journey so far by remaining positive at all times, and tbh by trying not to dwell on what I cant change. I just follow whatever advice Dr Bennett gives me and try to get on with my life. Taking a sleeping pill at night has helped with that too. Amazing how the demons generally visit at night when we are trying to go to sleep hey.

    If any of you are starting the journey and are premenopausal, look at the bright side, No periods ever again. For the first time in my life since I was 11  I dont have to keep tampons in my bag or house. Also ask your oncologists if you should start taking Ostelin Vitamin D & Calcium. Most of us women will need it to help prevent osteoporosis and its better to start as early as possible. My last bone scans revealed a significant reduction from the previous one so now Im taking the pills. I do wish they had told me at the beginning though. Whats 2 more pills a day arggggggggggggh.

    Thanks again for the lovely welcome. I hope I can help some of you with my experience of the ops and chemo and in turn I know I will have my fears allayed as I continue on lifes rollercoaster.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Thanks Lyndal,



    I think I can blame my anxiety on what I do for a job - I'm a cancer clinical trials coordinator. Everyday at work I get hospital reports about the severe side effects our patients have had that have sent them to hospital... So I have found it very hard to believe my docs when they say I'll be fine. I just have to keep trying to remember all our patients that don't end up in hospital :-)



    I've been taking Vit D and Bs since my diagnosis last month and I've signed up to a clinical trial for a bone building drug so will now be provided with a supply of Vit D and calcium for the next 5yrs.



    Not too worried (relatively) about the port. Just want to make sure its not too low or under my bra strap. Tempted to draw a box on my chest and forbid them to put it anywhere but in there ;-)



    regards to everyone!

    Jenn

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Lyndal - I'm on the northside - Newmarket/Grange/Wilston border. Why did you do chemo at RBH? The Wesley would have made more sense for you. I had mine at Chermside at HOCA.

    It's great you found this site. I actually met one lady on here who just happened to live up the road at the Grange - we have had many lunches.

    Sue

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Lyndal - did you work through chemo with food?  I couldn't imagine doing that.  My taste and smell changes were not too bad on the FEC, but with the Taxotere everything smelled and tasted like crap or mud lol I really struggled with food.

    I'm one of the lucky ones when it comes to bones.  I had a bone density scan done around 5 or 6 years ago, way before all this, and they said I had the bones of a 17 year old.  Had another one done a couple of months ago as a baseline for the Arimidex (had been on it about 6 months) and I still had the bones of a 17 year old.  It's not anticipated that I'll have too many problems with my bones.  I do still take calcium, magnesium and vit d though.

    Jenn - we'll be thinking of you tomorrow.  Yes - sometimes they don't think about the patient.  As Lyndal said though, don't worry about the port going in.  Mine was under a general not twilight, and it was pretty simple.  You will be tender around the neck and shoulder area for a little while, but it does go away.  To be perfectly honest I wouldn't bother too much about getting mine out, except I don't want the hassle of having to go in every 6 weeks to have it flushed.  So - after final infusion next week I'll have it out at the surgeon's earliest time.

    And don't worry too much about the se's - you know too much, but you've only seen the evidence of the few that get serious se's.  A lot of women have very mild to no se's from chemo.  Don't worry about it till or if you have too.

    And by the way - why were you up and on here at 5.00am???

    Trish

    xoxo

  • Linda1966
    Linda1966 Member Posts: 441
    edited January 2012

    I didnt have insurance so while my family and I paid for the op at Wesley, when it came to chemo Dr Bennett referred me to an onc friend of his at RBH so i could get the free care. We paid for the op cause Dr Bennett was the only BS available at the time I was diagnosed, all the others bar one who used the PA hosp were on holidays and I had no faith in the PA one as at the time I got a letter saying they would contact me in a months time to arrange for an op. Meanwhile Dr Bennett had seen me and was ready to operate two days later. As it turns out the day before the op, PA got in touch and asked me to come in 2 days later, but it was too late really. Didnt give me a great deal of faith in the PA 's method of determining its priority cases. At the time all I knew was that I had the fastest growing BC and wanted it removed immediately. Waiting till January was out of the question lol.

    Trisha, no I couldnt be near the shop during the worst of the chemo side effects. I copped the nausea really badly, was lucky I had a couple of girls who had worked part time after school for me who had both just finished grade 12 and they stayed on to run my shop for the 10 months or so that I couldnt physically work there. I just did all the paperwork and orders etc from home during that time. The few times I would pop in to check up on them, the smell was horrendous lol.

    Btw if doing chemo and having trouble with taste, try Ginger Ale. I found it to be the nicest tasting drink during that whole time.  

    Good Luck with the port Jenn.

  • racy
    racy Member Posts: 976
    edited January 2012

    Just went to the pharmacy to pick up my first prescriptions for the year; Femara and Efexor $70.80! I nearly had a heart attack. Last year I had the safety net due to chemo and only paid $5.60 per script. I hope I can claim for these on tax!



    Does anyone have a remedy for sore finger joints whenever I move them? They are the only sore areas I have.



    I'm off to the gym now for my assessment.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Thanks for the thoughts for tomorrow everyone. It was supposed to be 9.30am but today they called and said it is now 10.30am.



    Trisha-Anne: I woke at 4 this morning and knew there was no way I was going back to sleep... My doc gave me these tablets and it is my choice to either take 1/2 or 1. Tonight I'm taking a whole one...



    Hey, I could tell I was going to have a bad hair day this morning (all frizzy after my morning walk/jog) so I wore my long wig to work for the first time. Heaps of women loved it and were making comments that maybe they should get some! Most of the guys asked me if I'd bought a blonde one as well :-/



    regards Jenn

  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn, that's funny about the wig. Good luck for your port installation amd chemo.

  • racy
    racy Member Posts: 976
    edited January 2012

    Strange... I am blonde (and smart) but have not had luck with men :-( .

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    WOW (in abad way)!



    My son shared some info tonight that showed a breach of my patient confidentiality at the hospital where I am due to have my treatment. YES, info from pharmacy made it to my 16yr old son!



    To say I am VERY angry and upset can hardly touch how I am feeling... :-(



    regards Jennt28

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Racy: maybe you need to come visit my workplace ;-)



    Jennt28

  • racy
    racy Member Posts: 976
    edited January 2012

    Sorry about the privacy breach Jenn. I imagine you will be making a complaint. I hope you can retrieve the situation with your son somehow.



    Try not to let it interfere with sleep tonight or mental preparation for your procedure tomorrow.

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Hi everyone.

    I had my BS appointment today and straight away he could see that a couple of the stitches hadn't dissolved and were trying to break through the incisions, so he pulled them out. He reckons that is the root cause of my infection and I do have cellulitis as a result. He is confident that with continued antibiotics, dressings and wearing my bra day and night for the next 6 weeks, this will all be resolved. Phew... I am so very sick of having sore breasts. I knew he would figure out what the problems was.

    He reiterated that I would need chemo and Herceptin. I asked him why I couldn't just take the Hercepin and he said I could... but that it isn't covered by PBS unless it is in conjuction with chemo. Isn't that strange? The sceptic in me thinks it's all tied back to the drug companies to make more $$$ for them from the government. I mean who would have the sort of money to pay for this treatment. Not me for sure.

    Good luck for tomorrow Racy Smile. Let us know how you get on.

    Nighty night from me. Kate

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Racy: my son was very upset (crying) after this. In my distressed state I needed to calm him down about my diagnosis and prognosis :-( It made for a sad evening.



    Kate: The PBS only fund Herceptin given in conjunction with a "T" (taxane) because that combination gives a clear (studied) health benefit and the cost to the country benefit of the combination crosses their acceptable cost ratio benefit to the Australian govt ie: studies have shown that with that combination they can get enough extra work years from the population to make the cost affordable to the govt.



    Gotta "love" health economics :-/ It's all based on "working years " that can be saved vs the cost to the taxpayer - it's actually not about saving "your" individual life.



    regards Jennt28

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Jenn - you're treatment protocol is quite strange - usually you would be given AC-TH with 12 taxol - any idea why your onc is doing FEC and only 3 taxol? I had TCH because I was node negative.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Kate - good news about your breasts, yes - BS's are usually the best to sort these problems out.  Here's hoping that all goes well from now on.

    Sue, I think there's a couple of "standard treatments" when it comes to chemo in Australia.  It is certainly standard in the ACT to have 3 FEC and then 3 Taxotere for women with our diagnosis - ie grade 3 tumors.  I talked to a few in Canberra who were receiving exactly the same as me, and in the local area that I live in (country NSW, but close to Canberra) we seem to have a "cluster" of bc, but I think if you looked at it logically, the rate wouldn't be any higher, it's just that more people know each other in a small community.  All the women in our community were treated with the same regime as me.  So FEC and Taxotere is pretty standard here.  Other states may have different ideas.  I also think FEC is a little easier on the heart than AC, but I'm not 100% sure of where I read this.

    Jenn - will be thinking of you today.  Can understand your angst about the breach of privacy though - that's inexcusable.

    Racy - yes, scripts can add up.  Keep your receipts, if you go over $2,000 in medical expenses you can then claim on your tax - but if a lot of that is medical and not pharmacy, then you'll go back on the safety net.

    Chrissy - how did you go???

    Trish

    xoxo

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Sue: I have a congenital heart murmur and previous bouts with a fast heart beat. Onc doesn't want to take chances with A and then leave me not able to do the all important Herceptin. My wanting to continue working was another consideration. She did actually givecme the choice (I work in cancer clinical trials) of ACTH or TCH as alternatives. According to their stats all give the same statistical benefit when combined with Herceptin :-)

    I will however be asking her about weekly Taxol (Paclitaxel) rather than three weekly as latest research does seem to indicate a progression free survival benefit for that




    Jenn

    .
  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Jenn - well that explains it - I'm so glad you aren't having andriamycin - I flat out refused - not that my onc was going to give it to me. Good luck tomorrow!!!

    I'm going to miss the safety net this year after 2 years in a row of meeting the criteria - still it wasn't a nice way to get it. I did however, go and get all sorts of things done to get the most benefit out of it.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2012

    Hi all, just got back from the doc.  Bummer!....he has ordered a bone scan 'just make sure nothing is creeping up on us'  and don't get me wrong, I like his diligence but that also means another day in the city so there is no going home until late Friday.  Looks like I'm going to need something to help get my cholesterol under control as the last three lots of bloods has seen it rising steadily until it is now 9!!!!!  Thank you very much Femara and the doc even admitted that Femara was the cause so it looks like another little pill will be added to already overloaded pill popping mornings.......ugh!!!!!!!

    Wow Jenn, that breach of privacy is appalling! There must be some form of recourse for you surely!  I sure hope you can explain things to your DS without frightening him more.  Good luck with your port placement.

    Racy, how did your assessment go?

    Kate sure glad you got the sore boob sorted!  Now perhaps you can get on with healing.

    Love n hiugs all.  Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Chrissy - I hope your scan results are "boring" - ('I Say Yes You Say No' threads name for "clear".) Hoping you will be "boring" seems to work really well and results in clear scans so far for most of us :)

    ((((HUGS))))

    Sue

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Port in and waiting the mandatory hour before we can leave. Turned down the fentanyl and morphine because they both don't agree with me.



    I drew a line on my chest where my sports bra goes before we came and showed it to the interventional radiologist. He was happy to make sure to put the port so I could still wear my bras comfortably and exercise (when it is healed).



    Can tell it will hurt a bit later but not too bad now considering I turned down the hard drugs :-)



    Regards to all you lovely ladies who have gotten me sanely to this point :-)



    regards Jenn

  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn, I hope you have the rest of the day off and can rest up for tomorrow. When will you go back to work after chemo? It would be great if you had an option to work from home ;-) .



    The anticipation is worse than the reality of chemo. Use the tips we gave you and do whatever will keep you calm, such as deep breathing or listening to relaxing music.



    Chrissy, hoping your scan will show NED, and best wishes for getting your colesterol reduced.



    My visit to the gym was great. I was shown how to use all the equipment so have added stretching and weights to my program. The gym itself is great; the treadmills overlook the river and they and the bikes etc have personal video and audio equipment for watching or listening to media while exercising. I am looking forward to going again today.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Jenn - good to hear you are through and going well.  Wow!  you are doing much better than I was, I gather you didn't have a general? 

    Chrissy - I'm hoping too that your scan results are boring as h*ll lol

    Trish

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    No general. Some drug that was supposed to make you sleepy but it didn't, and just lots of local. The most painful part was the local injections.



    Going to work tomorrow as my chemo isn't until 3.00pm :-)



    Regards from crazy Jenn

  • racy
    racy Member Posts: 976
    edited January 2012

    Just remembered that today is the first anniversary of my first chemo. It was planned for me to stay in hospital overnight but I went in at 8am. This was the same day the floods hit Brisbane and my drugs were held up getting to the hospital. My chemo didn't start until 7.30 pm.



    By this time, it was flooded all around the hospital and noone could leave. Non urgent patients had been sent home about 11am. Even the staff had to stay overnight. The flood waters did not recede to enable movements in and out until two days later.



    During this time I was also worried about my riverside home but fortunately our reach of the river did not flood. I was sorry I could not help my friend whose home was inundated, or anyone else due to having chemo.



    It was a crazy time.

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