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New to site

I'm new here. Just wanting to hear from others in the same boat. Everyone I know that has gone thru cancer has for the most part turned out to be cancer free now. Sometimes it's hard to go to their parties celebrating their cancer free parties. I was diagnosed with bone mets before I finished chemo. I knew I was going to win over this beast. Not quite so lucky. Tumor markers are going up, so will be having a bone scan and Ct next week. Hoping they turn out ok.

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  • Hi Petreep Welcome to the group. I'm hoping along with you that everything goes well at your appointment next week. Please keep us posted.

  • Thanks

  • Hi Petreep,

    What type of BC do you have? Mine is Lobular and I also have bone mets. If you're Est+ you'll be put on anti- hormone pills like Arimidex, Tamoxifen, maybe Ibrance with Letrozole or Faslodex. There's a lot out there. Some women do well on a certain drug for many many years. So, take heart!

    I know what you mean about hearing of the women who are cancer-free. Alas, that's not us. We must plod on and make the best of our situations.

    My sister went through BC 16 years ago, Stage 1. She's feeling great and receiving no further treatment. She looks great too! Wish that were me!

    We must accept that we'll be under a doctor's care for the rest of our lives. That's the way the dice rolled. But it doesn't mean we have to stop living!

    Enjoy each and every day, and when you're feeling good, forget all about your BC!!

    Wishing you much good luck with your treatment plan. Keep us posted on what meds you'll be on etc. Do take care, and from one BC warrior to another, do something that's hard to do: Stop worrying!! Best wishes, Kats2

  • Thanks for the encouragement. Most days I do pretty well. My grandkids are what really keep me going. I have invasive lobular cancer with bone mets. I am taking arimidex plus exgeva shot every month.

  • Petreep,

    We're alike! I have ILBC too. Was on Arimidex also, but am now on Xeloda. I'm getting Zometa infusions instead of Xgeva shots for my bone mets. Were you told that Lobular BC is the "sneaky" cancer? It's hard to detect and hard to see on scans

    Do you have any bone pain? I do... in my spine, ribs and pelvis, where the bone mets are. I think my hips are now starting to be affected.

    My markers are climbing too. I may be switched to another drug soon.

    I'm glad your grandchildren are keeping you busy. Good luck with everything! Hope you continue to post your progress. Take care! Kats

  • Yes I have heard that about our cancer, which worries me about my daughters. I try to keep them warned about what to watch for. I just found out today that my markers went back down. So that was good news, but they have never been very reliable for me. Glad to have someone to chat with. Take care and I hope new meds will work for you. I talked with my oncologist last week about the new meds ibrance and letrozole or Ksqali and femora.

  • Hi Petreep,

    Some info I've gathered says that Lobular BC responds well to the anti-hormone drugs and that we usually do well with treatment. So that's good to know! On woman I spoke to has been doing well with the anti-hormones for 13 years and feels very good!

    I've had to change meds more because I believe that the Pleomorphic variant that's part of my Lobular BC makes me more resistant to the anti-hormone drugs. That's why I was put on the oral chemo pill Xeloda. I'm a little harder to prescribe for.

    On another note, both my mother and sister had DUCTAL BC. They were treated and were both put into remission. My sister is 16 yrs out and feeling great.

    With your daughters, remind them to get an Ultrasound along with their mammogram, especially iif they have dense breasts. LBC doesn''t show up well on mammograms. A 3-D mammogram would be better, but insist on the ultrasound. I wish that would've been done for me as I have dense breasts and my reports always came back that the images were hard to read. I had an MRI one time because of the density issue, but that resulted in the Radiologist writing "Most probably benign" for areas of concern. 4 years later that 'probably benign" turned out to be Lobular BC.

    We women need to be vigilant with our breast mammograms. I thought I was, and here I am, Stage 4. Can't look back now but must go forward.

    Good luck Petreep! Stay in touch! Kats2

  • I too have lots of bone pain. You can hear my bones in my fingers when I wake up in the morning. I didn't know about dense breasts until my last visit for mammo. Nothing ever showed up until I felt a lump. The doctor believes it had been there for 2 years. They are still doing 3D mammograms on my one remaining breast. Yes I am driving my girls crazy and one has found an issue. Mom is trying to steer in the right direction and the best doctors.

  • I, like yourself will never be cancer free. I have had tests the bone for 18 years. IV chemo, radiation therapy times three, and other treatments ! I am

    Glad to be able to support you if You wish.

  • Thanks. It's great to hear from others who have struggled and managed to keep kicking cancers butt.

  • Prayers for you for a good CT scan. I know how stressful it is getting them and then waiting for the results. My best advice to you is to ask for prayers on FB and from everyone you know. God has been good to me so far. I have a scan scheduled for next month and it makes me sick for a few days before it because I never know what it is going to show. I stay as positive as I can and am thankful for every day that I have. I pray that we both live long, pain free lives. God Bless you my beautiful pink sister. Yes have "got this "🙏🙏🙏💗

  • Thank you for all the positivity. Prayers are always welcomed. He has been good enough to see me this far. Will be praying for you as well. Have a great day!!😊

  • God bless!! Keep your chin up...

  • Hi , I am sitting right next to my sister Sohini,who is triple negative Breast cancer, getting her chemo done for the second time as it reoccurred with in 2 months after the first full treatment. All prayers for her and all of you here. It's nice to know and very encouraging after all the​ordeals you all are going through, you still have the guts and will to kick this dam disease away for good... God Bless... have a healthier and better life... :) "PRAYERS HAVE THE POTENCY TO CREATE MIRACLES" so let's all pray for all...

    Harry

  • Been living with bone mets for close to 4 yrs. Had hip replacement surgery, radiation and on Xgiva and Letrozole plus Lupron to suppress ovaries. I had two small spots on sacrum and right pubis bone that have not lit up on scans since mets diagnosis. I consider myself Living with MBC and I changed my diet and exercise regularly and try to keep a positive outlook. I eliminate stress whenever I can and have learned to not sweat the small stuff. I focus on my son and family and enjoy every moment. Keep focused... sometimes "winning" is just keeping the beast quiet and starved!

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