Topic: Bone Mets Thread

Forum: Stage IV/Metastatic Breast Cancer — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jun 22, 2012 01:09AM - edited Oct 28, 2021 12:22PM by moderators

Posted on: Jun 22, 2012 01:09AM - edited Oct 28, 2021 12:22PM by moderators

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.

https://youtu.be/YpFfLrITfEI


Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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Sep 22, 2015 07:12PM dunesleeper wrote:

Annie, what do your docs think of Neurontin for your pain? You will likely tolerate that better, and from what I understand it helps with pain. Can't prove it by me,but I keep taking it. Who knows how my pain would be without it? LOL A shrink prescribed it to help me sleep. It doesn't do that either, but I stayed on it for the possible pain benefit. Some people have been really helped by it.

Christine, you have to do something about a support system for yourself. And I do love it here, but especially with you being so young, you need to be around people. It makes a real difference in my state of mind when I do. The pain may still come. Good Lord it was horrible after I left a group of friends I had lunch with yesterday. But that pain would have come nonetheless, and I don't know how I would have tolerated it. As it was, I was seriously considering calling 911. I have been practically a hermit for much of my life, and I'm telling you, spending time with friends helps soooooooooooooooooooo much.

Remember how I said there's always something: just found a crack in my glasses. Thought it was a smudge. Then thought it was a hair (my hair is growing back but not that long yet), and now I see it is a crack. You can't feel the crack on either side, so I must assume it is on the inside of the glass, which I suspect makes it less stable. I don't know, but I see new glasses in my near future.

Dx 2/7/2012, IDC, 4cm, Stage IIB, Grade 3, 1/31 nodes, ER+/PR+, HER2- Surgery 3/6/2012 Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 9/3/2012 Reconstruction (right) Hormonal Therapy 8/19/2014 Arimidex (anastrozole) Dx 8/20/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2- Dx 4/17/2015, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Chemotherapy 5/3/2015 Taxol (paclitaxel) Chemotherapy 7/9/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy 8/31/2015 External: Bone Targeted Therapy 10/23/2015 Ibrance (palbociclib)
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Sep 22, 2015 07:35PM annieoakley wrote:

Dune, so happy to hear from you, your absence is always noticed! You bring so much to all of us here. So that brown spot on your finger that came up suddenly is strange indeed, looks like a birth mark I have on my wrist. Let us know what you find out. Your bird is so cute, is that Dusty or Soebe? I will ask my doctor about Neurontin, never heard of it. I need something I can tolerate, Celebrex was helping my pain but now my stomach is in turmoil. I did good with it for a few months, maybe the cumulative effects got to be too much. Sorry about the crack in your glasses but that's a good reason for a new pair :). Sleep well tonight, sending hugs to you, Annie

Surgery 5/7/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 8/22/2012 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 9/27/2012 Surgery 1/31/2013 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 6/11/2013 Prophylactic ovary removal Surgery 9/3/2013 Reconstruction (left); Reconstruction (right) Dx 9/3/2014, IDC, 1cm, Stage IV, Grade 1, 0/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 9/3/2014 Femara (letrozole) Radiation Therapy 11/30/2014 Bone
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Sep 22, 2015 08:05PM ChelleG wrote:

  • I'm so glad to have heard from you Dune. I am new, but notice when someone is missing. Perhaps the spot on your finger is a popped blood vessel. I have seen it on my grandfather, but he he knocked his arm pretty hard. Idk. Always. Mystery.im just glad to see that your wbc's came up and you are continuing treatment! While you were out I started tamoxafin and get my first zometa infusion on Monday. Scared Annie, I hope your tummy stuff gets resolved quick! Who needs that on top of everything else
Dx stage IV de novo 9/10/2015 with bone mets. Dx 9/10/2015, ILC/IDC, Both breasts, 2cm, Stage IV, Grade 2, ER+/PR+, HER2- Dx 9/10/2015, ILC/IDC, Both breasts, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 9/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 22, 2015 08:33PM KiwiCatMom wrote:

Geeze Dune! As Gilda Radner said, it's always something. I'm so sorry you're having such a rough time. Bad enough to have a crap week and pain, and then mystery spots, and now broken glasses. Just sucks! But I'm glad you got to see friends. And I'm glad you posted - your posts always make me smile. And, compared to what you're going through, a bit of (as my husband calls it) Bombay bum is nothing to complain about. Just makes the hour long train trip to work a bit tricky sometimes. I think I'm full of crap too; hence the trots. Sending you tons of hugs and get well soon thoughts. Are you done with chemo?

And, in the TMI category, speaking of bowel issues, I did manage to get a poo sample to the lab this morning when I went to do my blood tests. And I didn't drop anything so this one was cat hair free. :) It was disgusting, but it was funny. My husband suggested I add glitter to this one since I had cat hair in the last one. He does keep me laughing despite not being horribly supportive.

Annie - geeze! Sorry your tummy is so off. I'm kind of wondering if the Celebrex is what's causing my issues. I guess we'll see...9 vials of blood and a poo sample later... Hope you find something that works and clears up your problems.

Had tumour marker blood work done today, along with a bunch of other stuff. My fatigue level has been amazing lately; not enough sleep in the world. Almost like the first couple of weeks of Stage I radiation - that tired all the time. So the GP is looking at everything - liver, thyroid, kidneys, tumour markers, etc. Should have results Friday or Monday. As I mentioned, I may have giardia from our tank water, so that may explain the fatigue. Hoping it's that. Have switched us and the cats to bottled water for everything we drink. Still using tank water for the dishes, but the dishwasher gets the water temp up enough to kill stuff. And we put everything through the dishwasher now; no hand washing.

Looking forward to summer; I'm totally over winter. It's been a bizarre winter; quite cold and lots of rain. And it's just gone on and on and on. There's fresh snow on the mountains from Monday's storm; it was 5 degrees C in Wellington Monday morning but felt like -2 C due to wind chill. Yes, I am whinging. But I'm just sick of being cold and wet.

On a happy note, less than 8 weeks to our move into our house! I must be mad; 60 years old, Stage IV cancer and buying a house. Oh well!

Hugs to all,

Terre


Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 10/18/2006 Lumpectomy: Left Hormonal Therapy 12/9/2006 Radiation Therapy 12/14/2006 Breast Dx 2/9/2013, IDC, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/18/2013 Femara (letrozole) Radiation Therapy 2/18/2013 Bone
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Sep 22, 2015 08:40PM exbrnxgrl wrote:

Terre, You are not mad! I think it's wonderful. BTW, please send that rain to California. We are deep into an awful drought. Our rainy season begins in October and it had better be a good one.
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Sep 22, 2015 09:02PM kjones13 wrote:

terre--really feel for you with the tummy issues. Are they going to check for c-diff as well? I am sure you are exhausted. Maybe some extra iv fluids might help. When protein, sodium, potassium levels are off...can make you feel awful--run over by a bus tired. Let us know what you find out! I did like the glitter suggestion by dh

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2- Surgery 10/8/2012 Lymph node removal; Lymph node removal (Right): Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy; Mastectomy (Right)
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Sep 22, 2015 09:32PM KiwiCatMom wrote:

Thanks Kjones! :) I think they're checking potassium, etc, levels. Will let you know what they say. And yes, not enough sleep in the world for me. Which is unhelpful when I catch the train at 6:30 am and get home about 7 pm. At least I can usually sleep on the train.

Caryn, would love to send you the rain, along with sending it to the horrific fires in CA and the Pacific Northwest.

On another note, I'm asking that you all consider liking the Facebook page (link below) and sharing it with your friends. Karen Louisa passed away from Stage IV BC 5 months ago. Her father works in the same building as I do. He wears a pink ribbon lapel pin (a metal one) every day. Yes, I know, I know..pink. Anyway, I asked him about it and he said he lost his daughter to BC and he wears it in the hope the people will mention it or comment on it. He teared up when he talked about her and said "she was the bravest person I have ever known." In my opinion, he is brave - willing to talk about MBC with no "think pink" BS. He is so passionate when he says "We MUST find a cure; this is a disgrace!" I'm not asking anyone to contribute money, etc., but please help spread the word about this lovely woman, her amazing father, and Stage IV BC. Thanks!

https://www.facebook.com/karenlouisa.org.nz?fref=nf

Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 10/18/2006 Lumpectomy: Left Hormonal Therapy 12/9/2006 Radiation Therapy 12/14/2006 Breast Dx 2/9/2013, IDC, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/18/2013 Femara (letrozole) Radiation Therapy 2/18/2013 Bone
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Sep 23, 2015 07:09AM Wendy3 wrote:

Terre will definitely check out the Facebook page. Lucky you summer around the bend, spring is the absolute best. I'm facing a Canadian winter here. Also not mad to move into a new place. I'm moving around like crazy and I have a bunch of critters in tough and two teenagers change is good sometimes.

Dune I'm so glad to read your posts again. You are so amazing and strong you give me hope every time I read your comments. So what did the spot on your hand turn out to be? The body always keeps us guessing eh?

Annie I'm hoping that all your stomache issues get resolved quickly we have stuff to do and feeling crappy isn't one of them.

Dx 5/13/2015, IDC, Right, 2cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 23, 2015 08:06AM dunesleeper wrote:

It's a beautiful day for the first day of Autumn on the Middle East Coast of the not-so United States. There's a pastel blue sky with with occasional white puffs of clouds. I hope I remember to take a picture on my eay home. Out here in Westminster it's less developed, still some farms. Unfortunately the highway home is pretty high-speed and the yuppie drivers not so considerate, but I will look for an opportunity to pull over.

I don't know what the spot is yet but it may have gotten darker. I'll call the dermatologist when I get home, which will be after I check out a local optometry place to see what they have to offer. I prefer to shop local when possible.

Terre, I'll check out that page for sure, and do feel good soon. Spring will help.

Chelle, is the Zometa infusion unpleasant. It sounds like it is. Is that for strengthening bones? How often do you have to get it? Is it the one that is more tolerable when given slowly?

I'm not sure what Celebrex is for. I assume arthritis. Neurontin helps nerve pain. If there is any way your doc thinks it might help, give it a try. I don't have to take it with food. It causes no stomach upset. I've been taking it since 2012.

Thanks for thinking of me and all the welcome backs. Now we need Patty and Carly back. Anyone else?

Love you all very much.

Dx 2/7/2012, IDC, 4cm, Stage IIB, Grade 3, 1/31 nodes, ER+/PR+, HER2- Surgery 3/6/2012 Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 9/3/2012 Reconstruction (right) Hormonal Therapy 8/19/2014 Arimidex (anastrozole) Dx 8/20/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2- Dx 4/17/2015, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Chemotherapy 5/3/2015 Taxol (paclitaxel) Chemotherapy 7/9/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy 8/31/2015 External: Bone Targeted Therapy 10/23/2015 Ibrance (palbociclib)
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Sep 23, 2015 09:46AM dunesleeper wrote:

I don't remember if I replied about the bird. He's Dusty and he's been through hell the past couple of weeks. I thought I was going to lose him or he would lose his leg. Something went wrong while the vet was removing his band. The Jewish holidays came in after I could see there was a problem, so he said I needed a certain antiflammatory and had me call around to a bunch of pharmacies looking for it. Nope. So finally I could pick it up from a tech there. Stinky stuff. OMG! Still we used it and some swelling did go down. Later in the week I could see it wasn't doing anything anymore, so I started washing (light squirting) his leg with antibacterial soap and water. That's when I got a better look at it. He was cut and infected. So then I had to wait until after Yom Kippur I think for fim to see Dusty. That just happened to be the most painful evenings of my life. I could feel my bones. I felt like a skeleton from ribs to knees. The pain and the bone was all there was. Still. Had to get Dusty examined. I cried in pain at the vet's. Finally the doc admitted it was a thermal burn caused by the procedure. He wouldn't admit that it was infected but gave me an antibiotic, which I believed he needed. You could tell he was feeling better after the first dose. Took him down in the morning for the second dose. He ran across the wicker fruit bowl to my mother and her orange and proceded to bleed like no bird should bleed all over the place. It took a while but I finally got it stopped with styptic powder. Then I had to give him his medicine.Then I had to go to treatment all day, not knowing if he opened it back up and would be bled out by the time I got home. He's pretty good now. I'm not his favorite person but we'll work it out in his time.

Dx 2/7/2012, IDC, 4cm, Stage IIB, Grade 3, 1/31 nodes, ER+/PR+, HER2- Surgery 3/6/2012 Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 9/3/2012 Reconstruction (right) Hormonal Therapy 8/19/2014 Arimidex (anastrozole) Dx 8/20/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2- Dx 4/17/2015, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Chemotherapy 5/3/2015 Taxol (paclitaxel) Chemotherapy 7/9/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy 8/31/2015 External: Bone Targeted Therapy 10/23/2015 Ibrance (palbociclib)

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