Bone Mets Thread
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Wow Lindalou, what a sunset! Beautiful. Myra
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Hi everyone,
I'm new on here. I don't know how to start off a post, but I just wanted to have a group to speak with who are all going through MBC.
I wanted to first say I am praying for everyone and I hope we can all stay healthy and move through this. I hate so many of us at all ages are going no through this pain and horrible disease.
I was diagnosed when I was 35, and four months pregnant. I wasn't able to have all the tests I needed during my pregnancy, but after I had my beautiful son in July 2014 they found through the PET / CT scans I had a single bone met to my left pelvic. I had radiation and the last PET scans came back NED and I'm due to go in for the next set on 09/30/15. I've found that I am more stressed then I've ever been. I don't know how to relax and stop with the what if's. Every ache and pain I become so stressed and being a new mom I can't tell if I'm just tired or when I'm supposed to worry.
I wish everyone health and happiness, I just needed to talk.
Thank you,
Tiffany
A new 36 year old mom who wants to watch her son grow up and grow old with her husband.
Dx 02/14/2014 IDC 4.2 cm tumor to left breast, Stage II, 0/9 nodes, ER+ PR+ HER-2 -
Surgery 02/28/2014 Left Mastectomy
Surgery 07/24/2014 Birth of Son
Hormonal Therapy 08/2014 Tamoxifen
Dx 09/2014 with single bone met to left pelvic bone, Stage IV, ER+ PR+ HER-2+
Surgery 10/2014 Right Mastectomry, Total Hysterectomy
Radiation on pelvic bone
Hormonal Therapy 10/2014 Arimidex
Chemotherapy 12/2014 Herceptin
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Welcome Tiffany and at the same time sad that you find yourself in these difficult circumstances . I'm much older than you and my only daughter is grown but I do have a four year old grandson I would like to see grow but my anxiety is nothing compared to yours as a new mom. This forum is full of wise people who you can count on for support.
I'll keep you in my thoughts and prayers
Aurora
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Welcome Tiffany! It's a really nice group of ladies here and the information you can pick up is invaluable! Great that you are NED at your last scan! I see that you are due for your next scan soon...this is a time when our anxieties can make us more stressed then usual. If you have a good onc that is positive, that helps with stress a lot. I have extensive bone mets and my onc is very optimistic that she can keep me stable for a long time yet. I just try to take things one day at a time and be grateful that I am pretty much able to do all I could do before MBC
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Welcome, Tiffany. It's heartbreaking to see you are here with us as a young new mom. You will not feel alone here, though. You will feel better and gradually settle in a new normality once your new set of treatments begins and your NED status continues. There are women with bone mets living strong and well for long time, more than ten years, even more than twenty years. You have every reason to be hopeful for seeing your son growing up. Hang in there!
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Welcome, Tiffany! I'm so sorry about your dx, but I'm very happy to hear that you're NED, and pray you stay that way! I know the what-ifs can be torture, but it's truly in your best interest to figure out a way not to get overly stressed. Evidently there's new research showing a correlation between certain proteins needed for cancer to grow, stress at a catalyst, and genetics, which is why we all need to work at avoiding it as much as we can.
Sorry you ended up in such pain today, Dune. But, as always, I'm in awe of how much you managed to accomplish in spite of what you have going on. Good luck with tomorrow's infusion. I'll be thinking of you.
Aurora, good to see you!
Beautiful photo, Linda! Thanks for sharing.
Terre, I cannot imagine a good doc balking at a patient getting a second opinion. Wow! That kind of ego sounds downright dangerous.
Labs tomorrow afternoon for me -- to see if my counts have recovered enough to start Ibrance round #2.
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Thank you so much everyone for the warm welcomes. Prayers to all of you and I will keep you updated and keep me updated with how you are. It's good to find a nice group to be a part of.
A new 36 year old mom who wants to watch her son grow up and grow old with her husband.
Dx 02/14/2014 IDC 4.2 cm tumor to left breast, Stage II, 0/9 nodes, ER+ PR+ HER-2 -
Surgery 02/28/2014 Left Mastectomy
Surgery 07/24/2014 Birth of Son
Hormonal Therapy 08/2014 Tamoxifen
Dx 09/2014 with single bone met to left pelvic bone, Stage IV, ER+ PR+ HER-2+
Surgery 10/2014 Right Mastectomry, Total Hysterectomy
Radiation on pelvic bone
Hormonal Therapy 10/2014 Arimidex
Chemotherapy 12/2014 Herceptin
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Gotta get to sleepp0 -
Hi Tiffany-
We want to welcome you to our community here at BCO. We're sorry for the circumstances that have brought you here, but we're glad you've joined us, and hope you find this to be a supportive place!
Good luck on your scans, we're hoping for NED!
The Mods
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Welcome Tiffany. Sorry for your diagnosis but glad you found us. It does get easier with time.
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Welcome Tiffany... We all understand the fear... I am still battling that having just been diagnosed this past June. You just can't let the fear steal away your daily joy. When I feel myself getting bogged down with worry about the future I purposely get up and immediately try to throw myself into something positive. There are many things I can no longer do but there are many things I can do if I look hard enough. I am also seeing a cancer psychologist. I was skeptical at first but this has actually been very helpful for me because I can unload all of my worry on her without burdening my family so much. This has really helped changed the tone/mood in our house in general and is helping us enjoy our time together more. It just helps me keep the worry where it belongs.
Xavo... I also had an extreme reaction to Zometa on the first treatment. Extreme muscle pain, shortness of breath, vomiting... I even fainted. It was bad...
I did get a slow infusion but it didn't matter on that first treatment. But, the second treatment went much better. I also did the Tylenol/Motrin pre-emptive strike, starting when I got the infusion and continued through the night, drank a lot of fluids the day before and on the day of treatment, and I ate a very light diet that day as well. It still took me a week to bounce back though. I had muscle/bone pain for several days. My third treatment is coming up next Monday and I have a lot of anxiety about it... I hope it continues to get better. Sounds like bone broth is potentially a good thing... I think I am definitely going to give it a go... and I agree that eating a normal but healthy diet is ideal. I actually eat fairly healthy anyways... I'm just adding in more things that will hopefully help replenish my energy and help me be more active through this fatigue. I am very worried about the bone mets in my spine so I will add anything to my diet that can potentially help strengthen my bones.
Thanks for the beautiful sunset Lindalou!
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Tiffany - A warm welcome to you and congrats on NED. That's awesome. I echo what all others have said here. Glad you found us.
Aurora - how are you? It's so nice to see you here.
Dune - simply amazed of all the things you do and your talent!
Beautiful sunset Lindalou.
Beautiful weather here and headed to the beach for the day.
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Good morning everyone!
Tiffany, sorry you have found yourself here, but as you can see we all support one another, single met or many.
I'm on my way out for tumor markers again today & pamidronate on Friday. My first infusion was absolute hell too.... bone pain, nausea, very flu like symtoms, last for exactly 48 hours. Now I usually have a bit of a headache for the weekend, maybe a bit of bone achyness, that about it.
Kind thoughts today for those in pain. It's a beautiful day here & Pencil Boy & I are taking advantage of a free trip on BC Ferries to go have lunch at our favourite spot on the water. Have a good day everyone, Cheers, Dee
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Tiffany, I'm joining the others in welcoming you, though I'm sorry for the reason you're here.
I know Claritin is helpful in preventing the Neupogen/Neulasta aches. Is it also good in preventing Zometa reactions? I'm going to ask the nurse to slow the infusion (it's been a 30-minute infusion) but I was wondering about this, also. The tylenol/ibuprofen combo wouldn't work for me - tylenol is useless for me. Usually starting the day after Zometa I get bad flu-like reaction for about a day to a day and a half. I sure would like to avoid that!
Leah
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I have been on zometa for 3 years. Sorry to say I have the same side effects the whole time. Luckily I get my chemo every 21 days, and zometa every other chemo treatment. So every other month I am in bed for 5 days from the zometa. I am happy it's not every month. But zometa is working :
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The bone broth sounds interesting. Does anyone have a recipe, and do you use organic chicken bones?
Hearing all of the side effects many of you have been having with Zometa makes me wonder if Xgeva isn't being used as often now. They are both so similar if affect, apparently, but I've haven't heard many problems with Xgeva.
Wishing you all the best. My extensive bone mets continue to be stable after four years but I've moved on to liver mets as my main concern. Hoping to get them stable, too, and soon.
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Tiffany, welcome but I'm sorry u r here. I have found lots of information and hope here but most importantly women with beautiful hearts.
I have scans today and tomorrow. My first ste after being diagnosed.
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Linda thank you for asking about me. I read all the posts but I'm shy and quiet. Currently I'm dealing with the post effects of radiation to my upper spine to reduce rumors and my throat and esophagus hurts. I have the magic mouth wash but doesn't really help. I'm done with the radiation so hopefully it'll get better. Thanks for asking.
Wishing everyone pain free/se free days ahead.
Aurora
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Sandilee, here's a basic recipe that I usually double or triple because I go through a lot of it.
2 or 3 lbs. of bones (from organic carcass), 2 onions, 4 carrots, 4 stalks celery, 2 tbsp. apple cider vinegar, 1 gallon of water, salt and pepper to taste. I don't add salt and it still tastes ok.
Roast the bones @ 350 for about 30 minutes to bring out the flavor. Once cooled a bit, toss them in a pot and add the water and cider vinegar. Let it sit for about 30 minutes to allow the vinegar to help draw out the marrow and then boil and simmer. I usually simmer chicken for 18 hours and beef for 30. I've never used pork, but I'm guessing the time would be somewhere in the middle.
When cooled, just strain to get out the chunks. I usually run it through a cheese cloth after so it's nice and clear.
The beauty is you don't have to do a lot of chopping and you can add extras of any flavors you like....parsley, garlic, etc.
We don't eat a lot of meat on the bone, so I don't regularly have bones laying around, but the organic butcher is more than happy to give me a bag for a few bucks.
Besides just a nourishing soup base, it comes in real handy for cooking almost every meal, even just for deglazing the pan. Also, just because I like the flavor, I usually add some Tabasco and balsamic for some kick because I like hot and spicy food.
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Thank you so much everyone for the warm welcome. I truly appreciate being a part of a great group of women all battling this disease. A lot of people just don't understand, they don't see us as sick. TXmom I hope all your scans went well. Please let us know. I apologize I'm still getting to know everyone and I will figure everyone's names out soon.
I hope everyone is having a good post Labor Day!!!!!
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Hi all! I haven't been on this thread in quite some time because my mother's mets have been stable (yay!). Unfortunately, she's been having pain so I'm looking for a little insight from others. She has widespread bone mets with a significant amount in the hips and pelvis. For months now she has been having pain that comes and goes, sometimes lasting as long as 2 or 3 weeks at a time. She was sent for a CT in March and an MRI at the end of May and both showed she was still stable. The pain continues to come and go and seems to be progressively more intense. It seems to be limited to her lower back, buttock, and groin. We will get the results of her most recent scans (MRI of the lumbar spine and MRI of the SI joint) on Friday.
Have any of you experienced pain in this region that was not progression? And what can be done about it if she is still stable? She can hardly sit or stand because of the pain.
Thx
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Hi Starr - not sure if I welcomed you earlier. Memory loss isn't for sissies.
GoldenGirls - I'm on Femara and get off and on pain where my mets are/were (some are necrotic due to radiation). And I have high pain days and days when I'm fine. The Femara also makes my arthritis worse, but Celebrex helps. I kept thinking mine was progression but scans said all was well. Also, I got horrible pain in my femur that has the rod it in (to stabilise it). Just agony. Turned out that the bone is growing and I essentially have growing pains in the leg. So, yes, you can have pain without progression. So sorry she's in such pain and glad she's getting results in a few days. The wait itself is agony. Wishing her the best.
Hugs to all,
Terre
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Leggo - sounds delicious. Thanks for the recipe. How are you doing?
Aurora - Hope that pain subsides soon. Keep us posted.
Goldengirls - yes, pain can be worse without progression. I had the same surgery as Terre above, and sometimes can be agony. Had it checked and rechecked and it's stable. Same for other mets - sometimes they flare up and calm down again and again. Rads helped me a lot for intense pain and I have a good pain med cocktail that I take daily. Wishing your mom the best with upcoming results.
Lots of discussion about the length of infusions since I brought up the error that was done with mine. A little clarification if it's any help: Aredia (the one I receive) should be given over 2 hours, sometimes 4 hours for other conditions. Zometa should be given over 30 to 45 minutes. And yes, Xgeva seems to have fewer SEs (can't remember who said this on previous page but can't scroll back) and it's just a shot, no IV infusion.
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I need your lovely ladies help and advice. I was diagnosed with bone mets in July 2014 and was put on Xgeva and Femara. It was immediately great with tumour markers falling until this August when my CEA was 8 and 15.3 was 120. My onc switched me to tamoxifen and kept up the xgeva. I see him next week and am terrified as I am thinking in my usual fashion that tamoxifen will only last a short time as well. I have heard and my onc tells me that there are many hormonals out there, but no one is ever specific on what the names of these hormonals are or how long they can be effective. I have had many illnesses in my life and have had trouble getting a diagnosis each time as I look healthy and am always cheerful, but this time I thought the pain in my left side was nothing for a long long time....maybe I slept the wrong way......and it turned out to be lobular cancer with 22/29 positive nodes spread to my bones.....I had never heard of this and now I am more scared than when I was first diagnosed. I feel that each day is just a burden coming closer to the end as treatments will run out as I was hopeful with the femara0 -
Hi Sarah, welcome but sorry you are here. I don't know anything about Lobular breast cancer but I did see a thread. I think it is LCIS. If u use the search option on the menu, it'll pop up. I can't copy and paste or I would. I hope u get some good guidance. XO
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Welcome Sarah. Sorry you're going through this, but you're certainly welcome here.
Sadly, there is no "magic bullet" for this - there are people who have been stable on Femara for 5+ years and others who "failed" with Femara after only a few months. It's such a variable disease. That's the bad news. The good news is that some of the people who "failed" on Femara quite quickly have been stable for many years on an alternate AI. Certainly wishing that for you.
Terre
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Thank you both txmom and KiwiCatMom. Hope you are both doing well but I hate all the tests first, then seeing the onc next week for the results. How do you all think of other things as all i can think of still is this disease. It's soooo unfair as I always thought that bc was curable and you became "pink" and happy again. There is no bc in my family, I ate well, exercised heaps have three children who i breastfed and thought that bc would never be for me. I was told that breastfeeding is insurance against bc, let alone for Stage 4. Xxxx
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Sarah31, me too. All of it even the breast feeding 3 kids. I was like "WHAT?! What do u mean it's incurable?" No clue. I want my money back from all those races. Ha ha
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Hello to everyone,
I've been a way for a few days so I am absolutely lost and trying to catch up. We've been having some crazy times here, just alot going on.
Ok just jumping in from the last page because I cannot possibly remember any further back.
Lindalou, I absolutely loved the picture of the sunset, thanks for sharing that. I never paid so much attention to them as I do now, it's strange but I really appreciate the beauty of sunrises and sunsets.
Linda, I hope you enjoyed the beach today! Wow it was another scorcher here today with a humidex of 41!
Tiffany, welcome but so sorry you have reason to be here. You've come to the right place as you will find a wealth of knowledge and support here.
Txmom, praying for good scan results.
Goldengirls, I would have to agree with Terre and Linda, you can definitely have pain without progression. Just prior to my last scan I was having increased pain in my lower back but scan showed mets healing, and also as Terre said the Femara aggravates arthritis. For me it has even caused arthritis where I've never had it so some days I'm extremely achy.
Sarah31, welcome but I wish you didn't have to join us. Don't despair regarding treatments, just because you only got a year on Femara doesn't mean that Tamoxifen won't give you much longer. You did nothing to make this happen, so don't blame yourself. It's hard to not think of this disease daily but I find doing things that I enjoy and make me happy keep me distracted.
Hugs to all, Annie
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hello ladies. .FYI my nurses told be to take one claritan ( allergy medication) prior to getting first set of shots. Then follow through 5 days once a day. And this had helped extremely with my bone pain. I'm also started next week with ibrance. Was on Halaven, for a couple months. CAT scan Friday showed liver Mets increase and tm up from 300 to 500. So this will be my 5th trial to break from my liver mets. I also have bone mets too. Have a nice evening. .in bed resting.
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