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Comments

  • Ariom
    Ariom Member Posts: 4,027
    edited January 2013

    You really blow me away Mandy! I love reading your posts, don't ever think you are "ranting and raving". Your information is always appreciated.

    I can't imagine what it must be like getting that diagnosis. Not having symptoms must feel so surreal to you. I can understand your feeling like you are in a dream sometimes.

  • Alyson
    Alyson Member Posts: 3,737
    edited January 2013

    Morning all.

    Ariom you asked about sensations. I have had plenty and still get what I call phantom boob and that will happen when I drink something hot or cold. I can feel it right to my nonexistant nipple.  Really funny feeling but evidently not at all unusual. Its the same as those who have had limb amputations. The nerves still think there is something there and you can feel it.

    Mandy I don't think it is all that unusual to have no symptons of mets and it is common for mets to turn up when investigating something else. I have severe rheumatoid arthritis so we just have to keep checking to make sure that the pains are just from that and nothing else.

    Hope it won't be too hot for you Aussies today, looks like another warm day here getting up into the 30s.

    Big hugs.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2013

    Weather today here in Sydney is supposed to be over 40degrees again! I had my third last Herceptin infusion yesterday late afternoon and it gave me insomnia as per usual. Finally took a sleeping tablet at 1am and slept until 7am which was lovely...



    I got up and made french toast and bacon for the family and now am tucked in bed again, having just written my blog post for the week.



    Not totally sure where I'm going with this blog but I've been on Twitter for a few years now and have so enjoyed getting to read about other people's experiences so thought it was about time I shared mine. Maybe my words can educate or comfort someone? Make them stronger for whatever they are facing, or relieve someone's fears or feelings of being alone...



    Anyway, today is my achy day. I only have two more Herceptins now and I'm just so tired of it and it makes me sooo tired. Today is definitely a bed day.



    Hope everyone has a lovely weekend :-)



    Oh, and if you want to see my blog it is here... http://jennt28.wordpress.com/



    Jenn

  • mandymoo
    mandymoo Member Posts: 632
    edited January 2013

    Jenn, that is great that you are writing your own blog. I have become friends with just a few people over tha last few years, who write their own blogs, and now that I have mets, I enjoy reading them again, just to fathom where I am at. This information is so vital for others who may be going along the same path as you, even at a later stage as I have picked up quite a few pointers from these blogs in the past. 

  • Ariom
    Ariom Member Posts: 4,027
    edited January 2013

    Hi Alyson, I have the Phantom Boob sensations too. I just thought this Hot/Cold one was worth a mention because it is so weird.

    So sorry to hear you are another fellow sufferer of Rheumatoid, the only good I have got from this is a high pain threshhold!

    Got mine, the reactive type from a trip to Kuala Lumpur. I was running through a monsoon rain trying to get back to my Hotel when I must have been bitten by a tic or a flea. I had a frozen shoulder 10 days later that they thought was Dengue Fever, after much testing, and eventually a DNA test discovered the cause and the diagnosis.  Never experienced pain quite like it.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited January 2013

    Jenn, I've just read your blog and it is a great and inspirational read....



    I agree that this experience is like a roller coaster ride, ups and downs, twists and turns but knowing that you can never get off and at least some part of your mind is waiting for the next downhill plunge...



    Thanks!

  • Ariom
    Ariom Member Posts: 4,027
    edited January 2013

    Morning Jenn, Enjoy your bed today. I hope you feel much better tomorrow.

    Loved the pictures of your French Toast. It is one of my favourites too. I haven't ever thought about how Pure Maple Syrup couldn't be Organic. I have no idea! Is there someone out there in the wilds of Canada spraying those trees with chemicals?

    I am going to spend some time reading your blog. I enjoy your turn of phrase Jenn, you are a good descriptive writer, and I am certain that others will get great insight into the journey from you.

  • kyliet
    kyliet Member Posts: 587
    edited January 2013

    Jenn, the tamox. metabolising sounds very interesting. Could you please let me know exactly what to ask for? I have had no hot-flushes and my periods have come back worse than they ever have, and estrogen migraines are back - so it is hard to believe tamox. is working.

  • lolalee
    lolalee Member Posts: 164
    edited January 2013

    I have tried the link to Jenn's blog and - nudda, just says cannot access this page, do I need to do something else in order to obtain the link?

  • Ariom
    Ariom Member Posts: 4,027
    edited January 2013

    I had the same problem Lolalee, I just put the address in mycomputer search bar and it went straight to it.

  • mandymoo
    mandymoo Member Posts: 632
    edited January 2013

    Hi Lolalee, I had the same trouble as you, so I copied and pasted into google and voila. I hope that works for you.Smile

    Jenn, thank you for sharing your blog, you are so informative and I am sure that you will be mentor for a lot of us. I am thrilled that you are confident in researching and are your own advocate. It makes me wonder, why all these pharmaceutical companies do all this research, as I think that we can do our own research on ourselves and blog the results, this should be collated and looked at. I am a bit sceptical about the pharmaceutical companies as a big focus for them is how much money they can make out of it. Once a cure for cancer has been developed, then they stand to lose a lot of money.....Wink

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2013

    I think I've fixed the link in my signature now...



    Kylie - here is the info from the path lab here in Aus that do this test:



    The pathology lab that runs the test here in Australia is called Healthscape and here is the info they sent me copied below.



    Just look up their website for their collection offices or call them.



    From: Mioara.Gavrila@healthscope.com.au

    Here are the answers to your questions:

    1. The cost for Tamoxifen PredictAR test is $100.

    2. Sample (EDTA blood) can be collected at any Healthscope Pathology collection centre.

    3. Your doctor can use any request form with a note: 'sample for Healthscope Molecular Laboratory (Clayton)' If you or your doctor have any more questions, you can call us directly on: 03 9538 2259.



    Kind regards, Mioara

    Mrs Mioara Gavrila Senior Scientist

    Healthscope Molecular

    Mioara.Gavrila@healthscope.com.au

  • kyliet
    kyliet Member Posts: 587
    edited January 2013

    Thanks Jenn.

  • lolalee
    lolalee Member Posts: 164
    edited January 2013

    Thanks girls, have found it.  Rushing to the hairdressers so will read later.  Thanks again.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2013

    Hope you all are survivng the heat. Had a lovely swim this mornming after clipping the hedge. Also had a lovely 2 hour sleep this afternoon. No cooking tonight - chicken caesar salad - yumm.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited January 2013

    On Friday I completed day 2 of my 32 radiation treatments and today I noticed a red rash on my treated breast....not good.



    I see the Rad Oncologist tomorrow after treatment. Everything I've read says this is too early for radiation dermatitis but I do have sensitive skin and have eczema. I suppose I could also be allergic to the sorbolene?









  • lolalee
    lolalee Member Posts: 164
    edited January 2013

    Suzie I am in Perth this week and the weather is overcast with threat of rain.  Apparently there is a cyclone up North so the effects are noticeable here. 

    Hedge trimming sounds too physical for me at the moment, you must be feeling energetic.  The swim is ok but I dare not go into water at the moment as my scar is still healing.  In fact I will miss swimming completely this summer, will need to make up for it next summer.

    Hope everyone has had a good weekend, the site has certainly been quiet. Trish must be flashing her camera somewhere!  I am off to see the new Hitchcock film, just love Helen Mirren so looking forward to it. 

  • lolalee
    lolalee Member Posts: 164
    edited January 2013

    Tammy some sorbolene creams contain chemicals. I know they do recommend sorbolene during rads in Australia.  I do sometimes use it instead of soap without any ill effects but for use during radiation treatment I would have thought something without the sodium benzoate would be better.  I guess you will be asking the RO.  I know aloe vera and emu oil is popular overseas.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    Hi girls! A much cooler day here, temp got to twenty two with a few light showers thrown in.........the smell of rain on the parched ground was fabulous! Its getting on toward dusk and the galahs are going crazy in the cool air......such noisy birds but I love seeing them.



    I finally take my car in to get the repairs done from the bingle I had in early December. The repairer said it will take about three days so I will have a loner.......I sure hope its got aircon as its supposed to heat up again from tomorrow. It's good to feel like things a returning to normal and I can re-establish my routine.



    Hope you all have a great week and all are feeling as good as they can.



    Love n hugs. Chrissy

  • Alyson
    Alyson Member Posts: 3,737
    edited January 2013

    It has been a lovely evening here, cooled down and we sat out the back for ages chatting to friends.

    Hope you get the car sorted Chrissy.

    I must get off to bed. Do hope you all have a good week.

    Big hugs

  • Angela-R
    Angela-R Member Posts: 109
    edited January 2013

    I'm off to Brisbane tomorrow.

    Staying in an apartment just over the river from Southbank. Looking forward to some sightseeing maybe a nice lunch or two, and some relaxing, then watching my daughter dance on Friday.

    Have a good week everyone.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2013

    Tammy - aloe vera gel 99% or better is necessary immediately after your treatment. I kept iit in the fridge and took it with me to apply as I got dressed after.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2013

    Son (17yrs, on L plates) drove us up to the beach again this morning and we had breakfast and then a swim. Quite overcast here but still warm...



    I spent a few hours back in bed in the middle of the day as it's my after Herceptin weekend and I was feeling tired and nauseous and generally crappy. Managed to rally to do the grocery shopping with hubby and then he cooked dinner :-)



    Had nearly an hour on Skype with my sister in the UK this evening. It was the first time we have EVER talked "face to face". We only found each other in August after me trying to find her since the early 1990's. She is 19yrs older than me and both currently have the same short hairstyle and look very alike. We gave each other guided tours around our houses and only carefully spoke on the subject of our dad.



    He left his first wife and two daughters and later met my mother and had two more daughters including me. Both my full sister and Sandra's full sister died in the late 80's/early 90's. Sandra had no idea I even existed until I contacted her in August. It was a huge shock for her. I so wish we can meet in person sometime in the next year or so...



    Off to work tomorrow. Hoping I feel better than today. Only two more Herceptin infusions to go now!



    Jenn

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2013

    Jenn - how fast are they doing your herceptin - it's not normal to feel like you do. Get them to slow it down. I thought it was a piece of cake, just a late night getting up for the bathroom to pee all night after the saline solution.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2013

    Thanks Sue. I have noticed that I've been getting the side-effects a bit more each of the last infusions. I just think it's a build up after all these months. This week I only had a two week infusion and still got the aches, fatigue and mild nausea :-/



    Only 2 more!



    Jenn

  • jebdra
    jebdra Member Posts: 37
    edited January 2013

    Hi All - it's cooled down amazingly over here in the west - I think we sent all our heat over to you lot over east.  I hope all of you who have been threatened by fires are now safe.  They seem to have most of them under control, judging from the media.

    Not that I'm noticing the heat, I'm still in hospital (good aircon).  The surgeon said originally I should be out by last Friday (2 days), but now he's saying I can't go home till the drains are out, and he won't take the drains out until there is less than 30-50mm in 24 hours, and I'm still producing nearly 100mm per side!  God knows how long I'm going to be in here.  I'm getting very bored and cranky - but it's probably better here than at home.  I need to shut up and count my blessings.

    There's two other ladies in here atm, both with MX a while ago and getting reconstructions, one of them getting a TE put in and the other a final implant, (so we're at three stages - beginning, middle and almost the end - the nurses have started calling us the three witches).  Both have been through chemotherapy and we're all under the same surgeon.  It's been great having them to talk to.  We've basically had the whole ward to ourselves for the weekend as there's nobody else in the other rooms - so it's been more like a vacation camp! I suspect we'll see an influx of arrivals tomorrow and we'll feel resentful at losing "our" ward.

    Chrissy - that's good that you're getting the car fixed, but I wouldn't hold out too much hope for a good loaner, although you might be lucky.  Our experience in that has not been good - but best of luck to you.  A good working aircon would be essential.

    Jenn - that's absolutely amazing about your sister.  It would be wonderful to meet up with her one day.  If you've been looking for her since the early 90s, that's been a long hunt.  I hope your last 2 infusions go well and you're feeling better soon.

    They've just bought my evening ration of pills, so I'll be snoring pretty soon - sweet and healing dreams and hugs to all.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    Jan it sounds like your body is doing what mine did..........I was in hospital for a week before the drain was removed and that was only done as it was Christmas Eve and my doc was going on holiday. Here's hoping yours stops producing soon.



    Love n hugs. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2013

    Hello all

    I'm still here, and yes my camera has been working overtime!  Very busy all weekend photographing and processing, trying to keep up.

    Jenn - I found the last three or four Herceptin treatments were the hardest, I do think there's a build up over the months.  Some of us breeze through the whole lot and some have some issues towards the end.  I know I was really counting down the last couple of treatments, hang in there - you are almost through!! xoxo

    Jan it's so good you have two ladies who are able to talk to you about their experiences, bugger that you have to be in hospital so long though. My bs didn't keep his ladies in hospital because of the drain - they are very managable at home, easy to change and a home nurse to keep an eye on the dressings.  Mine was in for nearly two weeks because of the amount of fluid I was still producing.  I would have gone mad if I'd been in hospital all that time!

    Hope everyone else is going well.  We had a cooler day yesterday - it did briefly get to 30 degrees (for about 10 minutes) then cooled right down to 18 in the afternoon with rain, which was lovely after the heatwave of last week. Today is a glorious morning after the rain has washed the air and the smoke haze has disappeared.  It's only supposed to get to 24 today, but warming up as the week goes on - back to hot weather.

    Trish

    xoxox

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited January 2013

    I went to the Doctor other day and had blood tests and the nurse rang me today have to go back tomorrow as my iron levels are very low and unless i am having heavy periods, which i am not having any, he wanted to see me asap. so am abit concerned about obviously, explains why i am so darn nackered all the time,  we were busy doing rubbish and backed the truck into drive way and loaded it up with stuff from this property that is going up for sale, i had to have a hours sleep in the middle of it as i was exhausted in about 2 hours. but i get tired so  quick, well now i relate to why, now they need to look into why i am low in iron to this degree. so going tomorrow and the thyroid is low too, but not too bad, will be also dicussed.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2013

    Midnight, my iron levels are low too - but always have been.  It can certainly impact on how tired you are though.

    Trish

    xoxo

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