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  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited October 2015

    Many here have donated . Thank you !........Wandering around and cheerleading again :)


    Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs :)

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    https://community.breastcancer.org/forum/110/topic/834331?page=1

    Link to the mainboard donation page

    https://secure3.convio.net/bco/site/Donation2?df_i...

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited October 2015

    Love and Hugs to all my Southlander friends :) sassy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2015

    Hi Sarah, I'm so glad you found us, but so sorry about all you've been through.

    It's a tough road we all follow with this horrible disease. You'll find this group of Aussie (and a few NZ) girls are very supportive and helpful. We might not always have the answers, but can listen while you cry, rant and rave. We've all been there.

    We are having a get together at the end of November in Canberra. We do this every year, and it's a great weekend when a few of us get together to talk, catch up with each other and have a good time. Chrissy and I will be there, as well as a couple of girls from Sydney, one from Brisbane, one our girls from NZ and a girl from the Central Coast. If you are up to it, it's a nice weekend and we might be able to help you cope a bit better. It's always good to be able to talk to sisters that know what you are going through.

    Trish

    xoxo

  • Sarah31
    Sarah31 Member Posts: 20
    edited October 2015
    Chrissy...I can't understand why if there are loads of treatments available but I can only see a few when I look online. That is my biggest fear, running out of treatments, and you have eased my mind a little. I was on femara and Xgeva and femara brought me to being "better" and my bones healed, but my 15.3 went up, so my onc put me on tamoxifen. Femara had actually started to give me chest pains, so I am glad about the tamoxifen. But I see my onc next week and I hope my tumour markers have gone down again from 240. I really like tamoxifen as I feel stronger, but I did develop a peripheral blood clot in my leg, which my GP has fixed through antibiotics, so I guess I will have to tell my onc about it and I am worried that he will then take me off tamoxifen. It's interesting that tamoxifen was not good for you, but femara is, and I am the opposite.
  • Sarah31
    Sarah31 Member Posts: 20
    edited October 2015
    Thank you for the invitation Trish. When in November? Can I just come for one day rather than the whole weekend? Xxxx
  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2015

    Sarah it's the last weekend in November. A lot of the girls will arrive on Friday 27 November and go home on Sunday 29 November. Of course you can come for just the day, if that suits you better.

    We are staying at serviced apartments, and some of us are sharing, so if you do want to stay and don't mind sharing, that's a possibility to keep costs down.

    Trish

    xoxo

  • Smurfette26
    Smurfette26 Member Posts: 269
    edited October 2015

    Nice to meet you Aussie ladies.

    I'm a relative newbie. Just diagnosed last month. MultiFocal ILC.

    Had a mastectomy (Right) on the 9th. I'm recovering well from surgery and feeling stronger every day. Just as well as I have a long treatment road ahead. The ladies here give me strength, hope and courage so thank you. Donna.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited October 2015

    Sarah we all react differently to all these drugs, what is good for one is not for another. The list of treatments you saw on the internet was probably not up to date as they usually aren't so please don't stress. The oral treatments are usually the ones that are used first if possible with stage IV and you are right, there isn't a large lust of them but don't forget that there is a fairly long list of chemos also available to us.

    I am Factor V Leden so i have to be very careful of clots. I take a drug called Pradaxa which is one of the new oral blood thinners and doesn't need monitoring. You could speak to your doc about your risk of further clots and perhaps ask about this one.

    As to your markers, yes they are up but really quite minimally in the scheme of things. There are also other things that can push the markers up not just the cancer activity and really shouldn't be relied on as a perfect pointer just as an indicator.

    Yes do come for a day if not the weekend in November, I know you will enjoy it and be able to put faces to names here which is always a good thing.

    Love n hugs. Chrissy

  • racy
    racy Member Posts: 976
    edited October 2015

    Welcome Sarah. This is a great group of ladies and a great site overall. I will be at the meetup in Canberra and hope you can join us. It is a very friendly group.

    Chrissy, I did not realise you are NED. Congratulations! Looking forward to talking with you about your travels ;).

    Racy (5 years survivor - yay!).




  • aussie12
    aussie12 Member Posts: 421
    edited October 2015

    Hi all

    Tomorrow I go and see the Oncologist to find out about my Chemo. I'll be glad to find out when it starts, hopefully next week. I will let you know tomorrow.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited October 2015

    Hi Donna! Sorry you need to be here but glad you found us. Good to hear that you are recovering well from your surgery.........be kind to yourself and rest when you need to. Yes, your months ahead are going to be busy and at times very yucky but you will get through each and every treatment until you are done.

    We are all here to help any way we can so don't forget to ask if you have any questions.

    Love n hugs. Chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited October 2015

    Yes Racy, I have been NED for awhile now and very happy about that......lol. Looking forward to the catchup as well.

    Carol, keeping my fingers crossed that you get the info you want tomorrow. How are you feeling overall? Well healed I hope and yes, do let us know when you start you new chemo and which one.

    Love n hugs. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2015

    Hi Donna - welcome to the group.

    Good to hear you are recovering from your surgery. It is a very long road we travel, you are near the beginning, but we'll all help you along the way.

    Where in Australia are you? ILC is not as common as IDC, a few of us have had it. Will you need chemo?

    Carol - thinking of you and hoping you are holding up ok.

    Trish

    xoxo

  • mandymoo
    mandymoo Member Posts: 632
    edited October 2015

    Sarah, Tumour markers (CA 15.3) may rise and fall due to other reasons besides cancer. Such as if you're stressed or are unwell with a cold or flue or anything else like that. I hope that is the reason, and all I can say is to try not to worry. Mine are rising as well but only near the 100 mark, but they have been climbing very slowly since March this year. All I can suggest that you have a complete blood test including Vitamin D, B12. Thiamine etc just to make sure that your body is working at its peak performance. I get this test every 6 weeks, including kidney function, liver function, etc, etc, etc. (blood tests every 3 weeks and alternate blood test is WBE and CA15.3. (((hugs)))


  • Smurfette26
    Smurfette26 Member Posts: 269
    edited October 2015

    Thanks for the welcome. Happy

    Trisha-Anne until I was diagnosed with ILC I wasn't aware there were different types of BC. That sounds ignorant I know but I'm getting an education now; and fast. Looks like treatment will include chemo, hormone therapy and rads. As is often the case with lobular the tumours were larger than they appeared on the imaging; so now the combined mass is more than 5cm. I have a multifocal cancer and had 4 positive tumours within one quadrant of the breast. They were all low grade (Grade 1). He got good surgical margins. Unfortunately 1 of the 4 nodes removed in the SNB was positive. When I spoke to the surgeon my HER2 results weren't in.

    I'm North West NSW. Approx 30klms out of Narrabri so it does mean quite a bit of travel for treatment. Tamworth is my nearest big centre. Have 2 trips over there next week. Monday to meet the Oncologist and back again on Thursday for my post op surgical consult. It's 2 and a half hours drive each way. Hoping I will be able to have some Chemo treatments in Moree as it's closer to home.

    Fantastic that you are NED chrissyb. Hope I get there one day.

    These forums are a wealth of information and knowledge. So glad I found this "community". Hugs Donna.


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2015

    Wow Donna - you do have a lot of travelling to do. Have you looked into getting some financial support with the travel? I think there's something for remote people to help with some of the costs, but not sure what exactly. The Cancer Council may be able to help you with that information.

    You might find, depending on which chemo you have to do that you will need to do the first infusion at a "big" hospital just in case you have an allergic reaction. Once you've done one infusion, if the hospital at Moree has oncology facilities, you'll be able to do the others there.
    I'm in Canberra, but at the time was living half way between Canberra and Cooma. Cooma was a bit closer, and I was offered treatment there, but would have had to do the first treatments in Canberra.

    The HER2 results generally take about a week longer to come in, let us know how you go with those.

    We'll be with you all the way.
    Trish

    xoxo

  • Smurfette26
    Smurfette26 Member Posts: 269
    edited October 2015

    On each of my trips to Tamworth so far the Dr's/hospital have given me IPTASS (Isolated Patients Travel and Accommodation Assistance Scheme) forms to fill in to make a claim. It's a lot of paperwork. Think you get about 40 cents a klm. I have submitted one but haven't received anything back yet. I have more here to submit but they need to be signed by my local GP.

    There is a Social Worker linked to the Oncology Unit at Moree and she called me yesterday. There are other assistance schemes in place through Can Assist etc to help with "gaps" in treatment costs. She is visiting me next Tuesday to link me up to the available services. She was saying it costs country patients 5 times as much as their city counterparts to access similar breast cancer treatment plans. There is also a breast care nurse based at Moree who services this region. She visited me this week.

    I will definitely have to start my Chemo in Tamworth but hoping I will be able to have at least some treatments in Moree. An oncologist flies into Moree one day a week and they have a specialist chemo nurse.

    Thanks for your support. Happy

  • aussie12
    aussie12 Member Posts: 421
    edited October 2015

    Hi all

    Welcome Donna, you seem to be pretty well informed about services in your area.

    I saw the Oncologist today at SCGH, very happy with the service there. My friend came with me and because it was my first visit for chemo a Nurse came up and told me a whole lot of stuff then she came in with the Doctor as well.

    I have to go to a group information day hopefully next Friday, they give you a tour of the cancer centre (a nice fantastic new one) then explain everything that is going to happen. Then hopefully soon after I will be getting a Port put in. I'm having my chemo every 15 days through a pump at home which lasts 48 hours.

    My chemo is FOLFOX6. The drugs are Oxaliplatin, Leucovorin and Fluorouracil.

    Chrissy I'm feeling better with a bit more energy every day.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2015

    Carol, at last you know your treatment plan! It's interesting the chemo that is used for different cancers. The only one in your mix I recognise is the Fluorouracil .. it was one I had. I hope the chemo is gentle on you and hard on the cancer (((hugs)))

    Donna - it's great to hear you already know about the support you can get, every little bit helps.

    Trish

    xoxo

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited October 2015

    Donna.. Hi.. We lived in Gunnedah for nearly 20 years before moving to Brisbane, and just recently moved a tad further north, up to Bribie Island.. So I know the how hard it can be travelling for treatment.. Whilst in Gunnedah my daughter was diagnosed with urinary reflux, and we had to take her to Sydney a couple of times a year for tests.. It wasn't fun.!! I hope you can have some treatments in Moree..

    Carol.. Thinking of you.. Hoping you will feel better having your trearment under way.

    Sarah.. Hi and Welcome.!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited October 2015

    Donna it's great that you are getting the bedt info possible and it sounds like you are going to be able to do your treatment close to home which is great. Yes, to claim the travel costs is a lit of paperwork and a right pain in the butt but if there is a lot of travel involved it is definitely worth the effort.

    Wow Carol that sure is a mix! I can't believe it takes 48 hours to recieve through a pump but being able to get it at home has got to be a bonus. Glad you are feeling stronger every day and I'm keeping everything crossed that your chemo treats you with kindness but kicks cancer's butt!

    How are you doing Sarah?

    Love n hugs to all! Chrissy

  • mandymoo
    mandymoo Member Posts: 632
    edited October 2015

    Hi Donna, I am just wondering whether you have contacted your local Jane McGrath Breast Care nurse. Because of the privacy act, they cannot contact you first (stupid law, I reckon). They will have so much local information for you as well as financial help information. I really think that they take a lot of the extra stress and worry associated to this dreadful disease. (((hugs))) xxxxx


  • Sarah31
    Sarah31 Member Posts: 20
    edited October 2015

    Hello ladies. Thank you Mandymoo for the advice about tumour markers. I had a sinus infection and was on antibiotics when my TMs were 240. I had a blood test today and see my onc on Wednesday and I am scared as usual. I have had blood tests for the vitamins but not recently. I will ask my GP about them as my onc never tests for B12 or anything like that.
    It's great that you are NED Chrissy, and that's one thing I cannot work out....my bone and pet scan showed that my bones were healed, but my TMs were 240. I don't understand.
    Hugs to all :)))
  • chrissyb
    chrissyb Member Posts: 11,438
    edited October 2015

    Sarah tumor markers don't work for me......they are always in the lower normal range even when I have active cancer so I don't even get the blood test anymore. I have to rely on scans and how I feel but that's okay. My last lot showed no new activity and healed bone so doc recons that puts me at NED........I'll take that.....lol.

    Understanding all the ins and outs of this disease can be tricky but never forget that tumor markers can lie or not tell the whole truth......any inflammation in the body can send them up even a simple sore muscle or a sniffle. Unless they are outragesly high I wouldn't stress over them.

    Love n hugs. Chrissy

  • Sarah31
    Sarah31 Member Posts: 20
    edited October 2015

    Chrissy thank you for your reply and I will try not to stress. It's just that I was on femara and Xgeva since bone mets diagnosis in July 2014 and my tumour markers dropped to 69, then started to rise until three months ago they were 120, when my onc switched me to tamoxifen and in six weeks they rose to 240, but my onc said that my bones were healed and he could not understand the rise in tumour markers.

    How high is dangerously high for tumour markers? It's great that you are NED, I don't know if I am classified as NED? Do you have Xgeva injections?

    I guess I am worried that my onc will change treatment this Wednesday when I see him, as he changed from femara just based on tumour markers to tamoxifen. I don't want to keep changing treatments.

    Hope you have a good night.

    Hugs to you 💐

  • chrissyb
    chrissyb Member Posts: 11,438
    edited October 2015

    Sarah, I don't have anything other than Femara, magnesium, Vit D, B12, 9 and 3 and sometimes calcium.

    If you are not happy with what your onc wants to do don't be afraid to tell him so. You have the right to discuss and choose the path of treatment you take in the full knowledge of why you are taking it. If your onc won't discuss your options fully, then I would seriously consider a change........after all, this is all about you and your life.

    The only reason to change a treatment is progression and to me that meabs proof from scans not markers. The highest reading for markers I have heard of is in the thousands that is why I said yours were not high just up a bit. ☺

    Good luck with your visit on Wednesday.

    Love n hugs. Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited October 2015

    Hi all

    I have my dates for my chemo etc.

    Thursday 5 Nov I get my Port put in, Friday 6 Nov Group Orientation at the hospital again. "Friday 13" Nov my first chemo. I have to go back to the hospital on Sunday to get the pump out. Then 26 Nov to see the Oncologist then 27 Nov for 2nd round of chemo.

    At least I can organise myself a bit more now. I will be glad to get it started.

    Carol

  • Delvzy
    Delvzy Member Posts: 454
    edited October 2015

    good luck carol hugs

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited October 2015

    Carol - when you have the pump you do have to go in each day to get it filled up. I will never forget the sound of it whirring when my husband had that treatment. Also the oxaliplatin caused a nasty allergic reaction for him and he had to be admitted to hospital for the first day of every treatment. I do hope it goes well for you and you don't get any reaction.

  • aussie12
    aussie12 Member Posts: 421
    edited October 2015

    Suzie I get my pump on a Friday and have to go back on the Sunday to get it taken off. Hopefully I won't have any bad reactions.

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