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Australian Sisters

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Comments

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    I feel sad for me too. I feel sad for us all hereCry BUT I'd much rather have you guys holding my hand as I go through all these thing - and I will hold yours when it's needed.

    xxxxxx

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

    Kate (((((((( hugs))))))))). Where you are at is tough but you will get through. Loosing your hair I think hurts more than loosing your breast the big difference is, your hair will grow back. Good luck with your clipper work.



    I've had a fabulous day with DD2 and her fiancé, what I call a day of just chilling.....lol. DH took us all to the new Italian restaurant for tea and we have just returned. The food was fabulous and now we are all lounging around waiting for it to digest so we can sleep! Hope your day was equally as enjoyable.



    Love n hugs. Chrissy

  • racy
    racy Member Posts: 976
    edited January 2012

    Kate, all you can do is take it a day at a time and make the best you can of a bad situation. I had a lot of days when I felt really sad and sorry for myself. The thing that kept me going was counting down the days till the end of chemo. Each day that passed was one day closer to the end and that gave me hope.



    Because I never shaved my head and kept some (small amount of) hair throughout, I didn't have the same degree of shock as losing it all of a sudden, but that was just my uncommon way of dealing with it.



    For me, I think it was actually harder waiting for my hair to grow back, as that took a lot longer than chemo.



    Anyway, I do recommend marking the end date on your calendar and also tracking your percentage done with each cycle that you get through.



    Also, plan a holiday for after chemo ends, maybe one when your hair is starting to grow back.



    What do you like to do for holidays?



    I hope things are ok with your daughter.



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

    Kate - my hairdresser buzzed my hair for me for free and also any touch ups along the way - very nice of her. I never went bald - always had some fuzz - got lots of pics to remember what it looked like. Now I look like I've got a bad perm.

    Steve did leave a big mess out there - no room in the bins left and the trailer is full too. Lucky the green bin gets emptied on Tuesday.

    Made a date for tomorrow with a friend from the bus who had DCIS a year ago. She's coming shoe shopping with me and we'll go to lunch after.

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

    Morning Ladies

    Hope we are all recovered from yesterday?

    Kate - how are you feeling today?

    Jenn - back at work today? 
    Sue - keep your DH away from the garden, but enjoy your shopping.

    Chrissy - how are you today?

    Racy - how's the gym going?  You must be starting to tone up beautifully!

    I'm editing photos from the wedding today lol

    Trish

  • racy
    racy Member Posts: 976
    edited January 2012

    Hi Jenn

    I just now logged on to my laptop to view your pics.  You were 'brave to shave'.  But everyone will be looking at your beautiful smile, not your very short hair.

    Your wigs are very nice too.  It's good that you could get them very like your own hair.  It will help you feel a bit more like yourself when you look in the mirror. 

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

    So yes, it was a day in the office today. Apart from the whole wig thing I felt "normal" and had a great energetic day getting through lots of paperwork. Also a very exciting day because our abstract (with me as one of the authors) was uploaded to the ASCO website for consideration for a Trials in Progress poster presentation. Having a presentation at the annual ASCO conference (the largest cancer conference) is very prestgious :-)



    Dropped in for a cup of tea on the way home with someone I worked with in my previous job. I only found out today that she fell and broke her knee-cap in December and has been off work since then for surgery and recovery. We compared health challenges over our cuppa. It was actually a really nice catch-up.



    Hoping that the full day will mean a full night's sleep as I still can't seem to sleep through the night like I used to before all this started in December :-(



    regards Jenn

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

    Jenn - sorry I remember now I was going to tell you where I got my melatonin from.  It's the Australian Biovea site, hopefully this link works

     http://www.biovea.com/au/results.aspx?PageNo=1&KW=MELATONIN

    I find it's great.

    Glad to hear how well you are going, you are doing much, much better than I did on FEC.  There's no way I could get through a full on day like you are.  Well done girl!

    Trish

    xoxo

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

    I just tested the link - it takes you to the biovea site, you'll need to click on the sleep tabs at the side, then it gives you a choice of the melatonin you want.  I get the 3mg time release capsules, 90 in a bottle.

    Trish

  • racy
    racy Member Posts: 976
    edited January 2012

    Hey Jenn, what is the trial you mentioned about? Is your centre involved in any interesting trials re BC?



    What stream is your professional background? Lastly, will you be studying in the upcoming semester?



    Sorry if too many questions. I am just interested!

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

    Thanks Trish!



    Did you take them when you were still having treatments?



    I feel sad and achy today. Am still snuggled in bed and may stay here a while. My hair has grown (!) and is now stubby and starting to irritate again, so hubby has said I can use his razor on it again when I want...



    When I got home from work yesterday I discovered half of my underarm hairs had gone - I hadn't shaved under there in a couple of weeks as I was told not to use a razor. Now I'm thinking I was shedding hairs while walking around the office yesterday. Good thing there were so few people there!



    Jenn

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

    Hi Racy,



    I signed up for two trials. One is simply an extra bit of blood and a urine test every so often. That one is an Australian study looking at whether they can identify any markers that will help them predict who will suffer cardiac toxicity with Herceptin (it's for Her2+ women).



    The other one is an international study called D-Care. It's a blinded trial looking at whether Denosumab (a bone building drug approved for osteoporosis) is better than placebo for preventing development of metastatic bone cancer for women at high risk (which I am because of being Her2+ and node + and LVI +). What they are really trying to see is if the drug is better than the rival Zometa. Both of these are already approved for use in women who already have bone mets so now they are all racing to see if the drugs can stop the bone mets developing. As it is a blinded trial I don't know if I'm getting the actual drug or just saline... being in the trial means I get an extra shot in the stomach every so often for the next 5 years; I have to take a combination calcium/vit D capsule provided by them everyday and I get bone scans every year for the next 5 years. If at the interim analysis they find that the drug works better than placebo they can stop the trial and women who were on placebo will get Denosumab for free. I think I've pulled the placebo arm because I really didn't notice any of the expected side-effects after that first shot...



    I work for the urogenitary, prostate and renal group. Both my trials are in renal cancer. One is an adjuvant treatment trial (large international trial being run out of the UK) and the other is looking at alternating two chemo drugs for patients with metastatic cancer already (an Australian trial).



    I finally decided not to enrol in a uni subject this semester. It would have been too much. But I have already enrolled in two subjects for next semester and the external student office has recommended I contact the disability unit early to access any extra help I may need eg: longer exam time, a writer for my exams etc.



    regards Jenn

  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn, interesting. I will read further about the D-Care trial. I asked my onc about Zometa following the San Antonio news and he said no, no proof yet but there could be something in it that prevents recurrence but they are not yet certain what it is. He is keeping an open mind. Hopefully your trial will add to the body of knowledge.



    I agree it's probably best to take a semester off uni while doing chemo. As you know by now, it's not just the physical side effects that you have to manage. Plus you have work and family to juggle. I can tell you will be back into study in semester 2, after chemo :-) .



    You did see a therapist, right? Will you have another appointment?



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

    Did see the psych onc that is on the team at my centre. She is lovely. It's up to me if I want to see her again and when. I just have to phone and leave a message to suggest days/times and she phones back with one that suits.



    I've seen her twice - once not long after my diagnosis (when I felt ok) and then the other week before my treatment when I was seriously scared and anxious and considering "getting off the train" and doing no treatments. She listened and contacted my GP and paved the way for me to get an anti-anxiety med for before my treatment. Then she came down to the chemo suite during that first treatment to see me which I really appreciated.



    She is not only available to me but also to anyone else in my immediate family if they want to visit her. Great service and all free.



    I will probably see her again for a chat/cry in a few weeks because I'm already panicing about the Taxol side-effects :-(



    Sun has come out! I might go and treat myself to a five-minute sit out in it!!!!



    Jenn

  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn, it's good to have ready access to psych type care. I found my moods were so unpredictably up and down depending on what was happening and I couldn't predict when I would need an appointment. I have been seeing a psychologist regularly since Dec 2010, initially through the Cancer Council (no cost) then via a Medicare funded mental health plan that the GP authorises. I have been taking an antidepressant since May. It all helps a lot.



    I looked at D-Care but wouldn't be eligible as I was clinically node negative (ITC only). I am registered with Wesley Research Institute for any relevant trials.



    I was contacted (by my onc's office prior to registering) about a trial involving fish oil. As I did not want to end up in the no fish oil arm, I declined that one.



    As I mentioned before, I am involved in the post BC menopausal wellness study which is also being administered by Wesley with QUT school of nursing. It's not clinical as such but I am benefitting through being involved.



    In fact, it's good to see studies from a research body looking at complementary treatments.

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

    Jenn - I only started the melatonin after I went onto Arimidex.  I didn't have any problems sleeping from dx to the end of chemo!  Stress and worry seems to make me sleep lol.

    The Arimidex seems to cause an interuption in your sleep cycle.  I go to bed really tired, and either can't get to sleep or wake up after 15-30 minutes and can't get back to sleep.  The melatonin really seems to help.  I still have the occasional night where nothing helps.  Wednesday night I went to bed at 10.00 (really tired) was up at 10.30, went back to bed, was up again at 11.00, went back at 12.00, went back at 1.00 and was still tossing and turning for a long time, last time I remember looking at the clock was at 2.00am!  I'm just lucky I didn't have to go to work on Thrusday!

    Sorry you aren't feeling the best today Jenn - rest as much as you can. You may be overdoing it a bit at work :-)

    Kate - you are very quiet - how are you feeling??
    Trish

    xoxo

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

    Racy - if you had stuck with David G he might have lied for you to get Zometa - I'm really glad he did.

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

    Love my melatonin :)

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Hi everyone.

    Well I have just come back from a day and night up in Perth. I went to the wig library and got two very nice brand new wigs to borrow for as long as I want them, and if I get bored I can swap them.

    Decided against buzzing the hair the other night. Hubby was not happy about it, said I should wait until it is at the point of no return.... I know it's my decision, to have the control when I choose, so I thought, well what's a few more days difference if it makes him happy and I can put up with it. So I'm day 9 today and not shedding as much as the other morning. Interestingly though my fingernails look bluish colour.

    Anyway I will post pics of my hair, no hair and wigs when I've done the deed. Oh and I also got a couple of buffs and a great cancer council sun hat. I am all set!

    Oh and just one other little thing. Just the last two days I have had very slight nausea. Fairly constant but mild. Just enough to notice and feel a bit off.

    It's 42 today. Just horrible. I'm trying to stay cool. I would give anything to be able to dance in some rain at the moment Cry (sweaty face, not teary face). xxxxxx

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

    Kate - sounds like you had fun getting the wigs.  Sounds like you are all set with the buffs and hat.  The nausea sounds like it's still from the chemo - some people take longer to get past it than others.  You are asking for a lot more meds next time aren't you?  That way you should always have something to take when you feel queasy.

    My hair started falling out in earnest around day 13 or 14 so you still have a little way to go.

    It's quite pleasant here today - not too hot and not too cold.

    We are having a "street party" tonight.  There's 7 families that live in our area - 4 on the big farm that we are at one end of and 3 of us that have 8.5 acres each.  We get together each year around this time to catch up and have some fun.

    We didn't do it last year - I wasn't well enough, and one of the neighbours was being a pain, so it was deferred.  Looking forward to tonight, bar-b-que and pretty much all the salads are home grown and delicious sweets.

    Better go have a shower and get ready lol

    Trish

    xoxo

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

    It's pouring here - no street parties for us, just meat balls :)

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

    We just had a huge rainstorm!!!!!   the wind driven rain was coming in sideways!!!   One good thing about it though, I think the temperature has dropped by about 10 degrees.........much cooler now, I can turn the aircon off and open up the house....yay!!!!

    Kate, sorry you are feeling a bit ikk do you have any maxalon or something else to help you through?  If you don't, make sure you ask for some at the next infusion.  Glad you got a couple of wigs you like as well as some buffs....they are really great and so easy to wear.

    Jenn, you sure are getting the best care for all things.  Where are you being treated?  Sorry if you have said before, but I can't remember......any way, they certainly are covering all angles of your treatment.

    Trish, enjoy your street party!  sounds like a whole lot of fun!

    Sue, enjoy your meatballs.....they sound yumm.  I think I'll make myself some zuccinni fritters for tea as DH is in the city and won't be home till late and they are yumm, nutritious and easy....lol

    Love n hugs all.  Hoping you Sunday is a restful one.   Chrissy

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

    Kate, I didn't do the shave until Day 13 so you do have a few more days. Really, I held out until the disadvantages (discomfort and over 20 hairs coming out between my fingers when I ran my hand through my hair) outweighed the advantage of having hair.



    Chrissy, I'm having my treatments at RPA (the one on the TV show). It is not the closest hospital to where we are, and we do have very good private insurance so could have gone private, but I work in research and knew that RPA has some excellent specialists! It's also right next to my work so easy to pop out for appointments/bloods/tests.



    Jenn

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

    Kate - glad you got some buffs - where did you get them from?

    The meatballs were yummy - just a Masterfoods packet mix called Tuscan Meatballs - but tried and true.

    I'm quite exhausted today, I'll be going to bed really early I think. The rain seems to have stopped for now - we'll probably get high humidity now.

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

    Hi everyone,



    It's been quiet here! I'm back at work again this week until Thursday afternoon (when I have my next tx) so will only be on here in the evenings.



    Chemo is definitely the gift that keeps giving :-( Ended up having to visit the chemist yet again yesterday to get some hemorrhoid stuff. I'm not the slightest constipated so no idea how I got hemorrhoids!



    Apart from that I'm feeling "normal" and still quite energetic. Went out for a lovely restaurant dinner with hubby and some friends last night because it's my hubby's birthday tomorrow. We are both 47 this year - I'm in April.



    Hope the quiet here is a sign that everyone is healthy and busy! How are you doing Kate?



    regards Jenn

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

    Jenn, hope you have a good week at work and so sorry to hear about the hemorrhoids....that really is a bummer...lol.....pun intended....lol.  Sorry, just my warped sense of humor that surfaces every now and then.  Glad you are feeling 'normal' other than that.  Happy Birthday to your DH!!!   Gosh you are young!!!  You make me feel positively ancient....lol!

    Kate sure hope you are doing okay and if not then gentle ((((hugs))))) to you.

    Love n hugs.  Chrissy

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Hi GirlsSmile

    Well that's got to be a pain in the a*** Jenn. Yep, the gift that keeps on giving.

    Well no nice dinners for me lately. Alls quiet here with me - but that is good. I have like a tiny cut (ulcer?) in the corner of my mouth and one on my tongue. So it is a bit sthore at the moment ha ha. but I do still have my hair.... day 11 today and would you believe I have had the best hair day I have had in over a month. I went to a place over here called Solaris, which is a drop in centre for anyone with cancer and you can have complimentary therapies (I'm having reflexology done on Weds morning) anyway the greeter there said "I love your hair by the way" and I thought.... make the most of it, it goes in a few days.

    Anyway, the place was oh so very Zen like and you can also have massages and they do meditation - with a Harpist, I am not really much of a navel gazer type but what the heck - I'll give anything a go...

    Omm  Omm  Omm

    xxx

  • racy
    racy Member Posts: 976
    edited January 2012

    Kate and Chrissy, ha ha ;-) . I used to have mouth ulcers quite a bit but fortunately not since BC.



    Jenn, your problem is probably again related to propensity to bleed being a chemo side effect.



    Enjoy your hair while it lasts, Kate.

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

    Kate, I always have mouth ulcers and I know they can and do get very painfull.  I use the bicarb and water mouth wash as well as biotene and fleuride free toothpaste also helps.  When I need to eat I use a good wash out with Diflam C, the pink one as it  has an anaesthetic in it and works well.  Just thought I'd pass on a few tips I've learned over the years and hope they help.

    Love n hugs all.  Chrissy

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012
    Thanks Chrissy - will go to the Chemist tomorrow and get some Diflam as that sounds just the ticketWink

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