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2013 Survivors!!!

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  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2017

    karen you look like a model~~gorgeous!

    Latigger, so glad cancer did not invade your uterus and hope recovery is going well.

    juneaubugg, I am going to be wearing my FUCK CANCER t-shirt again for your dad and your sister and for me. I know that so many have gone 5 years and all well but some, not so good and then so many family members and friends too.

    My nerve issues became serious by time I had my MRI and that showed enhancing tissue. CT chest scan soon after showed a lump. Core biopsy August 17 showed a tumour which turned out to be breast cancer recurrence. That would have been enough but the nerve damage is directly related to the fact that the brachial plexus neurovascular bundle happens to be entangled around the tumour. Yes FUCK CANCER. So it is inoperable and incurable and since diagnosis it is right back to the old days of non stop appointments. I had 5/8 radiation sessions today and yes it over the max but no choice. I am on big gun drugs, Ibrance and Faslodex. More scans in November to see if any shrinkage and/or decrease in pain. I have almost no use of my right hand now. But I am on a good opioid pain management regime and awesome team at BCCA but now in Victoria. All teams in our province work together which is so good.

    Saw my new MO yesterday and no imminent death! I have done a couple of blog posts, first 1n a long time.

    http://breastcancereh.blogspot.ca

    Love it that we are still a group!


  • iatigger
    iatigger Member Posts: 269
    edited September 2017

    Juneau, sending lots of positive vibes to your dad and sister. And big hugs to you while you support them both.

  • juneaubugg
    juneaubugg Member Posts: 517
    edited September 2017

    Marian: just saw your RX on FB too. I'm sorry my love. I know you'll kee fighting. Please keep posting here too. We are still here for you.

    Do you remember Scorchy? She's been battling for five years now. Maybe you'd like to reach out to her too

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2017

    juneaubugg, I tried to check on her awhile back and found nothing. I fear that she passed away but if anyone knows anything it would be good to hear.

    I have many friends (and ones I even see) still from our Sept. 2012 chemo group and have loads of support. I am in a pretty good space and if we can deal with some of the pain from the nerve damage then as the RO said yesterday, I can get back to a good quality of life.

  • ireland20
    ireland20 Member Posts: 175
    edited September 2017
    Marian, so sorry to hear this. Good on your for being so positive.xxx the gift that keeps giving. Prayers and hugs for all who need them.♡♡♡
  • Jennie93
    Jennie93 Member Posts: 263
    edited September 2017

    Marian, that news is such a bummer, but I love your blog and your attitude. Yes, F CANCER!!!

    Do you all remember when Stride was dx with mets and she said something like, the odds were that one of our group would get it, so she was taking one for the team and the rest of us would be safe. If only that were the case, but she was so great, would be laughing and crying reading her posts.

    Prayers and hugs to all.



  • websister
    websister Member Posts: 405
    edited September 2017

    Marian - so sorry to come here today and read of your recurrence. I do hope they can get the pain under control for you. Sounds like you have a good team. I still remember meeting up with you when you were here in Calgary. You have had a rough go of it and yet you continued to take those awesome trips and share on your blog. I will go and read your latest posts but wanted to post here also. Hugs and prayers coming your way

    Juneaubug - Sorry to read about your father and sister's diagnoses. It seems like there is so much more thyroid cancer being diagnosed now. Is there an update on your father? I also hope that he does not need 'the red devil' - it truly was evil!

  • juneaubugg
    juneaubugg Member Posts: 517
    edited September 2017

    hi websister! How are you? No update on dad yet. We go see specialists next week and should have a treatment plan by Thursday. Thanks for asking... x

  • websister
    websister Member Posts: 405
    edited September 2017

    It will be good when a plan has been put in place for your father. I will be thinking of you on Thursday.

    I'm doing pretty good, thanks. I have an endoscopy Sept 26 - I have a pre-cancerous condition of my esophagus called Barrett's esophagus so the monitor fairly regularly. They take quite a few biopsies during the procedure. It will be good to be done with that for a bit. Other than that I can't complain at all. I am thankful to be able to continue to work and I am really enjoying my family and especially grandchildrenSmile

  • kkuziel
    kkuziel Member Posts: 77
    edited September 2017

    Juneaubug, so sorry to hear of your sister and your father's diagnosis. Maybe you're the healthy one now for support, which I am finding to be harder than being the unhealthy one. Hubby's heart attack in April, followed by a hernia in May, and now a back/shoulder issue causing great pain and lack of mobility. Going on 6 weeks with no solution in sight. Going from a very active man to someone who struggles to lift a coffe cup right now has been a real test. Being the cheerleader on the side has been harder than being in the battle. Bulk up on your patience and ability to forgive. You'll need both to help your loved ones through this difficult time

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2017

    kkuziel, recently I have considered if something happened to my husband. He is what we call the teflon man and his sister in NZ refers to him as the golden boy. Am hoping that he discovers what is going on and that there is some resolution.

    Websister, your test is in 2 days to let us know. I think I may be in Calgary this winter and if so we can meet up again!


    Love to you all, Marian

  • aruba
    aruba Member Posts: 276
    edited September 2017

    imageimageHi Sisters,I have been thinking of you a lot as I read the struggles some of you and your loved ones are going through right now. Today, I visited Maria's field of hope, a huge field of thousands of planted sunflowers in memory of Maria, a child with a childhood cancer. A foundation and charity now exists to eradicate cancer. A prayer note for all of you now stands in this field of HOPE. Sending hugs!

  • websister
    websister Member Posts: 405
    edited September 2017

    MarianElizabeth - you asked about my endoscopy - I went into it very light-heartedly - joking and laughing with my gastroenterologist. The nurse who assisted him was a friend I used to work with in Day Surgery.

    After the endoscopy things were different than they normally are when I'm done. Usually the report says to follow up again in 3 years for the next one. This time there were quite a few pictures and what I am seeing in the pictures concerns me. The report says that multiple biopsies were taken and a sample was sent for histology. Follow up was indicated as to be in the GI Clinic. Next morning his office called and said he wanted them to book me in within the month to discuss the results of the endoscopy. The appt is on Oct 27. It's going to be a long four weeks


    I would love to meet up with you again!

    Aruba - beautiful - so lovely that you did that!


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2017

    Websister, how many "waiting games" have we played and always more to go it seems. Since he did not ask for it to be immediate may give some assurance that it is not dire.

    If I do get to Calgary, for sure we will meet up. Meanwhile, lease let us know when you know.

    Aruba, I love sunflowers.

  • websister
    websister Member Posts: 405
    edited September 2017

    Yes, MarianElizabeth - we have definitely had lots of 'waiting games'. The report said that biopsy and histopathology results would take 2 - 3 weeks to come back so I am assuming that he wants those results prior to my appointment with him. He usually gives me a prescription for Pantoloc and gives a 3 month amount with 3 refills to cover a year. When I got my prescription filled yesterday it was for 8 weeks worth with no refills so something is definitely up but yes, hopefully not dire. Always good to have more objective opinions when it comes to things like this :)

    I hope you do come to Calgary - that would be wonderful!

  • ireland20
    ireland20 Member Posts: 175
    edited October 2017

    Hi all,

    Back again to vent... FUCKING cancer. My BIL who has been my go to man through all my dramas in life since I was 17 has been diagnosed with advanced stomach cancer. This is after loosing his 2 sisters in the last few years to the same disease. Jeanaubugg I am stealing you Dylan Thomas quote.. as it reminds me to keep fighting. It has taken since last Friday to get an oncologist and appt. Today for some reason I remembered that quote and when they tried to fob me off til next week I raged and now have secured an appt on Thursday with NI top Clinical oncologist. Trouble is NHS is so far behind for treatment of more complex cancers, I would appreciate any information on Proton Therapy and recommendations of any hospitals in the US offering this for advanced stomach cancer and any upper GI specialist surgeons or oncologists. We will have access to scans plus medical records on thursday so can email anywhere. Thanks all...some day I'm gonna have good news.xx

  • Joanne_53
    Joanne_53 Member Posts: 714
    edited October 2017

    Ireland so sorry to hear this news. I have no information for you. Hugs and prayers are coming your way

  • iatigger
    iatigger Member Posts: 269
    edited October 2017

    Here is part of the group who showed up to give cancer the finger. This is why I love living in a small town :)

    I also had everyone write down names of Survivors and Angels that they knew who had any type of cancer.

    It just shows how much everyone is touched by this F'ing disease.

    image

    image

  • aruba
    aruba Member Posts: 276
    edited October 2017
    Hi ladies,
    So I just had follow up with my onc office. Some info I learned..have you heard of this.. If you were estrogen positive...
    There is a newer test, Breast Cancer Index (BCI) for factoring in if you should stay on anti estrogen therapy beyond 5 years. They take a sample of your original biopsy and send to lab in San Diego.

    I'm paraphrasing what I learned..
    There is a test called Breast Cancer Index where they ship a segment of your original tumor to San Diego company. They can tell risk of recurrence in years 5-10 and likelihood of Anti estrogen therapy (Arimidex for me) will benefit an additional 5 years. This based on ratio of 2 genes associated with estrogen to predict if Arimidex worth it another 5 years.
    So would tell me if I am low risk or high risk of cancer returning in next 5 years (more than 50% of recurrence happens after 5 years) and benefit or not (in my case..more Arimidex).

    Costs about $1000 and company will contact you and see about if your insurance would help out (An told Medicare would help, but I'm too young). My onc office suggests getting it so as not to waste time on Arimidex if not indicated. Otherwise she said it's easier to give meds for bone loss vs cancer again..so would stay on it unless this test shows otherwise.
    This reminds me of oncotype test to see if chemo would be benefit..of course I was in intermediate range...so had to decide. Think this may be another tool to help weigh risk vs benefit and side effects of aromatase inhibitors like Arimidex and also Tamoxifen.
    I found this interesting and will probably pursue. More info and knowledge can't hurt..it's $$ but no further testing in me. I am gonna get another dexa scan to see how osteoporosis is doing.
    Otherwise all well.hope to become a grandma in Jan and my daughter engaged! Wedding in July! So plenty to be happy! Hope you all doing well!
  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2017

    Would love to have had the chance for that test but Anastrozole (Armidex) failed me at the 4.5 year mark. I planned to stop at 5 years and certainly would have pad the $1000 rather than further bone loss. I am paying the approx. $380 Canadian twice a year for Prolia for bone loss.

  • websister
    websister Member Posts: 405
    edited October 2017

    marianelizabeth - you had asked me to update when I had my results appointment with my gastroenterologist, following my endoscopy for Barrett's. All biopsies and the sample for histology came back as negative for dysplasia/cancer. The suggestion is for closer, yearly surveillance of the Barrett's rather than every three years. I am relieved.


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2017

    Yay Websister! Will keep you posted if I come to Calgary,


  • juneaubugg
    juneaubugg Member Posts: 517
    edited November 2017

    hi ladies. Just catching up. Good news websister. Aruba- thank you for thinking of us all. The sunflower field was so spectacular! Andthanks for sharing the info on the test . I’ll ask my MO whwn I see her next month.

    My cat just had a lumpectomy for mammary cancer!! Poor little girl.

    Two seats later My sister just had 1/2 her thyroid removed so she should be cancer free now. Dad starts round 3 of bladder cancer chemo next week.

    I’m healthy as you can be. Having my implant in my remaining natural breast exchanged on 11/28. It never dropped and it’s jusr too big. Going down a size.

    Anyway, hang in their very one. Try to enjoy the holidays.


  • juneaubugg
    juneaubugg Member Posts: 517
    edited July 2018

    Wow we haven't been here in a really long time... Just came back to look up some stuff. My sister was just diagnosed with BC and dad is fighting stage IV bladder cancer (having already had his bladder removed). FUCK CANCER.... please check in ladies; i miss you all!

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited July 2018

    Checking in! Guessing you all know I went stage IV almost a year ago. Can't use my right hand and crazy neuropathic pain but seriously hanging in loving life. But yes "FUCK CANCER."

  • loral
    loral Member Posts: 818
    edited July 2018

    HI,

    Sorry to hear of your struggles God Bless You...


    Loral

  • Jennie93
    Jennie93 Member Posts: 263
    edited July 2018

    Checking in. Don’t come here too often anymore, but this will always be in my favorites. Thankfully all done with the 5 years on the evil AI. Woo hoo! Now if the SEs would just subside... regardless, thankful it’s over.

    In my prayers Marian.

    Hope everyone else is hanging in there too.




  • Cindi74
    Cindi74 Member Posts: 69
    edited July 2018

    Hi, Mariane, Hope you are doing well. I love Canada and Canadians and apologise for our rude, undipomatic president.

    Hope you are doing well. I had uderine cancer, not a metasticis in 2016 and went through 5 chemo--worse than 6 mos of breast chemo, Also radiation. Now I have broken foot that isn't healing well, but the children and my husband are very supportive. He has prostate cancer that has metasticised to bones, but he still is doing well. He finished his book, Scholar, Father, Soldier Wynot! He has given it to all of his 21 grandchildren. We had a lot of fun with it. Will be 81 this year, and am glad to be doing as well as I am. I really appreciated the support of our group on bc.org in 2012-2013. There still is a group of about 30 on facebook. Hugs to you and your family. Nerdy

  • Cindi74
    Cindi74 Member Posts: 69
    edited July 2018

    Hugs, Stay safe.

  • ireland20
    ireland20 Member Posts: 175
    edited September 2018

    Marian

    so sorry to see you are where you are❤. Hard to know what to say.....my beloved BIL fought his battle and lost and now I think he was laying the path to follow. I hate cancer...what a fxxking waste of time and energy, then I come back to here and see the brave who battle on. Good to hear the latest tests to see if we really have to stick to the drugs that I often wonder if they do more harm than good....in Ireland we remain behind the times and only now are introducing coldcaps!!! Sorry but I'm feeling more negative than positive of late....aching bones, thinning bones,thinning hair.....I get so sick of it all. Does anyone else think that perhaps CBD oil is the way to go! I have been told so many times it is, and only on Saturday I was told by a chemist that she has noticed people on it for all sorts of reasons have reduced the other medications they are on?. Sorry I'm being very down trodden but I am so sick of appointments of late...one minute I am officially, but not offically as it can sneak back at anytime! being told by bc nurses I am cured only to have another summons to yet another Drs office for prodding somewhere else that I am beginning to lose sight of the real me as it is always there waiting to pounce when you least expect it to. Does anyone else feel the same after all these years, lots of hugs.M