Bone Mets Thread
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Babs your heart must be bursting about now. You lucky thing give us lots of pictures so we can live varcariously through you😊. This is one of those milestones we all want to reach and you are there . I wish you safe travels and a lovely time next is grandchildren😜
Wendy
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Babs!! That's wonderful, now go have a great time
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woooohoooo!
>Z<
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Babs, I'm beyond ecstatic for you! You'll be dancing for sure. I can't wait to see the pics, these are the moments we treasure!
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Happy for you Babs! Enjoy this wonderful time.
Reading along and sending turbo best thoughts to everyone
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Has anyone treated bone mets with tamoxifen? I just found out through a PET scan and MRI that I now am stage IV with mets to the spine. I am awaiting the results of a bone biopsy to determine if the hormonal status is the same as the primary tumor from 4 years ago. In the interim, I am back on tamoxifen and hoping it is doing something for me. (I was on tamoxifen for 2.5 years, took a break from it to have a baby and my cancer progressed to stage IV, I believe, during the pregnancy. I am pretty confident it is hormone receptor positive as a result). Anyhow, I've been on tamoxifen for a month while waiting for tests and results and attempting to meet with a new oncologist. The new oncologist seems to think that I should get Lupron to put me in forced menopause and then take Letrozole and Palbociclib. My question is why do I need to be put into menopause? She said I would have more options in terms of AI's but is tamoxifen not a viable option? (I'm 35). Is there any chance I could see improvement with tamoxifen only? I'm starting to panic that I'm taking too long to start on an effective treatment plan.
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sooo frustrated with the pharmacist at Walmart! They filled one of my prescriptions last night with a brand that I cannot use and I've told them before that I can't use it. When I called because I got all the way home before I realized it then they left me on hold for for four different times for a total of 14 minutes while they tried to figure out if I was telling them the truth or not. She actually asked me have you ever told us before that you can't use this brand. So I went out this morning and turned that brand in and the girl that took the pill bottle literally rolled her eyes at me. I told the pharmacist I didn't appreciate being treated like an idiot or like I was a liar. She proceeded to show me the brand name that they had given me and show me that it was indeed gluten-free. I told her I didn't care if it was gluten-free I've tried it before and for some reason that brand bothers me and the last two times I had filled it with a brand that I can take. Why are they allowed to treat people like that !!!! She said you're just gonna have to check every prescription to make sure it's something you can take ! Grr...
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Fight4Two
You can see improvement on tamoxifen only.
Bone mets move slowly. It is very possible that the hormonal changes during pregnancy drove the growth of the cancer so ... not being pregnant is effectively a treatment as well. Think of yourself as being on two treatments.
I think you have time to see if the tamoxifen works. Ibrance/letrozol remains an option if tamoxifen fails.
Estrogen drives ER+ cancer. If you want to try to treat cancer with Estrogen suppression (lower your estrogen levels to zero so there is nothing to feed the cancer cells) then you have to knock out all the sources of estrogen in your body. Ovaries are one source. Lupron shuts off estrogen production by the ovaries. Androgen can also be converted to estrogen in fat so you stop that reaction with letrozol. Voila ... no estrogen, no cancer growth at least for a while. So that is why you have to force menopause if the strategy is to starve cancer by eliminating estrogen from your body.
Tamoxifen, I believe, works by blocking the receptors on the cancer cells (factcheck!?!?). There can be estrogen in your body, it just cannot park on the cancer cells. Those parking spots are taken by tamoxifen, as it were. It can work well.
The disadvantages of tamoxifen is that it may be a slightly weaker protocol than letrozol and ibrance. Maybe there are still a few parking spots open for estrogen to attach to the cancer. But if it works, it's a great place to start. Also ibrance hasn't been proven to work with tamoxifen yet so you can't get the benefit of a duplex therapy with tamoxifen, but holding ibrance for later is not a bad idea.
I am on ovarian suppression + letrozol and ibrance. I hadn't reached menopause when my cancer was found, so we forced menopause. I was 50 so what the hey, right.
At 35 with limited bone mets, I would give tamoxifen a shot. Or at least I would not worry while you consult with different doctors. I would also ask about some kind of local treatment (like radiation) of the couple mets. That may give you a boost since you have very very limited metastasis. You may be oligometastatic. This thread is a good read on the topic.
Sorry you are in this position, but it doesn't sound like a crisis. If you are on tamoxifen, you have time to get the doctors you want and consider the opinions and the options they offer.
>Z<
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Gracie,
Sorry for the inexcusable treatment from WalMart. They do not provide my cancer med (KU Med speciality does that) but I have to put in a plug for my local (KS) pharmacy. They have gone above and beyond for me on other meds many times. One tech did a fine job of chewing out Humana when my MO changed my xanax dosage and they (Humana) didn't want to allow it. Last month they called all nearby non- WalMart pharmacies to find my steroid.
I was shocked by what great service I've had. Sounds like you may need to speak to a manager. Terrible treatment!
Do you have another option?
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My wife went a little over a year on tamoxifen before it failed. She went from 100% ER+, to 30% ER+ then zero, she's now Stage 4 triple negative with bone mets. Actually, she's doing fine on Xeloda so far and better than she was on the Tamoxifen.
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I do have options to go elsewhere, will find out who the manager of the pharmacy is and talk to them
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Hello ladies ,
I have a question about travel how do you ladies do the insurance thing ? Totally spaced it out but I guess now that's something I need to get behind. Man I hate this disease it steals everything away even freedom
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Wendy I am not sure about your question, but from what I know when you buy travel insurance within 14 days of ticket purchase or hotel purchase, you could find Insurance companies that cover pre existing condition. DD traveled a few times, that's what they did. She did not have to explain what her illness was.
Gracie it's so frustrating! This is bad public relations. Either you could take it to a higher level, a lot of people don't bother to complain, that's bad for everyone, or if you could tell them you will take your business elsewhere ( to the manager) and do so. You cannot be aggravated all the time. Brands do matter. It doesn't affect everyone, but for a lot of people it does. I have my share of stories, and it's hard work, even at small pharmacies, it's worse at those large places that really don't care about that one person. So sorry.
Fight4two how old is the baby? So sorry you are going through this, but Z as usual broke it down perfectly. It's better to take these Estrogen blockers seriously. Hope you find the right treatment soon.
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i can get travel insurance any time i buy an American flight. it covers trip cancellation AND medical costs while i travel. no issues with pre-existing conditions. some of you may recall that I found out that i had cancer 3 days before i was supposed to fly to peru. the tickets had been purchased for months. 2 days before the flight i bought trip insurance and they covered ?!? doctor visits in peru, if you will believe it, including a really wild peruvian pet scan .... long story.
the point is that i have found the travel insurance you buy from american extremely forgiving and supportive.
>Z<
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Thanks "Z" so I just read a on a Facebook page healing cancer the integrative way. Anyway this woman has had bone mets for four years now it's in her liver. Her doctor told her if she doesn't find a drug to work fast than she would have six months only to live. I read that and immediately felt sick to my stomach. I know lots of woman who are around longer than that with liver mets. I hate these ups and downs.
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Thanks Momall..I'm going to talk to the manager on Monday.
Wendy, I hate it when doctors say stuff like that!!! Jeez!!! They don't have any idea really...any of us could live a very long life!!! Why do they scare people like that!!
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I don't know Gracie but I always get so panicky since my cancer is growing so fast at the moment or at least I'm thinking it is. I see you are also on letrozole /femera how are you handling it
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I just booked a trip to Hawaii 6+ months from now to get decent airline rates. Bought insurance for under 50 bucks. It's worth it in case shiz goes down hill from here to then.
Can't stop living...gotta keep pushing forward even tho cancer is progressing and my right leg is getting number and number because of nerve damage from tumors.
Hate this effing disease.
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Wendy, I've been on Femera now for 8 months and this last scan just showed some improvement. I've still got active spots though, so am hoping the longer I'm on it, the more effect it will have on them! Hope you have a wonderful Sunday. Will be keeping you in my prayers! I try not to listen to projected percentages or anything like that because I know that spontaneous remission does happen, so am focusing on that instead and just cramming as much life into every day as I can. Hugs!!!!!
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I need recommendations for a second opinion. I completed breast cancer treatment in October stage 2, had bone pain this January, and scan on Friday that showed multiple bone lesions. I am very confused after undergoing aggressive treatment (mastectomy, chemo, radiation, and tamoxifen). I am willing to travel. Does anyone have a good recommendation? Mayo clinic, MD Anderson, cancer treatment centers? I would love to hear about your experiences.
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Tessio, I would choose the NCI-designated cancer center that is closest to you. If there isn't one very close, ideally you can work out a plan where you get that second opinion to have them work with a local onc, which is what I and others do. That way, you only have to travel to the NCI facility/onc every few months, while having someone closer who follows you monthly or as often as needed.
I'm so sorry about your re-dx. Sometimes doing everything right just doesn't ensure it won't recur. But you are absolutely doing the right thing to seek a second opinion going forward. Hugs, Deanna
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Tessio - Here is a link to the NCI designated cancer centers. The are all very good with access to all the important trials. Convenience is the primary issue ... you want one that is logistically easy to get to ... short drive, direct cheap flights ... ideally with local friends or family to support you. Lowest possible stress is the key because when you need these centers, you will be under enough stress already.
You still have to find the right doctor within the center. I've been to two NCI center and neither doctor I met with was very good. So even NCI centers have duds. Keep going until you find the right doctor in a convenient NCI center. You need an exceptional second opinion doc by your side as you make treatment decisions now and going forward. It gets complicated.
>Z<
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Tessio, Z is right. You can run into a doc who has a dud personality or for whatever reason just isn"t a good match for you at even the highest rated places. And stay away from "satellite" offices. I've heard of more than one negative experience at a top tier facility, only to find out it wasn't the main medical center, but a satellite office, where you may not have the same level of docs and specialization.
So once you figure out a viable second opinion facility, one thing you can do is start a new topic within the Stage IV forum here, asking for specific onc recommendations at that facility. That way, you can hopefully find a really good one.
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Tessio, Depending on where you are in Indiana, ( and how far you are from WI) a very good NCI center is in Madison, WI. It is the Paul Carbone Cancer Center. I saw a female MO who only works with advanced cancer/stage 4 there for my second opinion. She was very thorough, and knowledgable. They are on top of the best clinical trials as they are also a teaching hospital. PM me if you want her name. In Indiana, The Indiana University Melvin and Bren Simon Cancer Center is in Indianapolis. My cousin went there and felt that she had received very good care and was pleased with her second opinion. I have had the privilege to be invited to the Purdue University for Cancer Research and although it is outstanding, it is designated only for research and not patient care. Good luck.
Deanna, Have you started Xeloda yet? How are you doing?
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Linda, I started Xeloda on Friday. My counts were still quite low from Faslodex + Ibrance, and that combined with just being small, made my local onc pretty insistent on starting with an ultra low dose, with the goal of ramping up weekly over the next 3 or 4 weeks. I'm glad now that he wanted to do it that way, as I've had some mild nausea, dizziness, and just feeling "off," so hoping this approach will allow my body to adjust.
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Lita Hawaii oh what a dream. Counting down. Sorry about the numbness, just keep an eye on it, to make sure it's nothing encrouching in the spinal cord.
Teslo in no time you got great advice, sorry for the disappointment, there are not words, no one can understand.
Deanna so glad you got to start Xeloda. How low is the dosage, and how often? Will you be getting BT every week. I think it would be good, because the WBC and HGB could go down fast with certain people, and it should be watched. If it's far to travel for you, maybe they could fax you a script and you could go to the lab nearest you. It's just that it was hard on Dani, and luckily she was going in for Ixempra infusion so they tested her blood anyway, and sometimes she had to either hold back or get Neupogen. And one time, when they kinda were negligent (for real), her #s dipped too much. Watch yourself, but it with all that, it could be a great tx!
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Tessio- I have an appt. at Mayo Rochester this week- I will let you know what I think !
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Dear ladies. My mom was switched to Taxotere from faslodex(hormonal therapy) because of extremely painful joints. Onc said the pain was due the cancer. How long could it take for the symptoms to get better? Doc was convinced it helps but somewhat it has even gotten worse after first cycle. Tumor flare maybe? We'dreally appreciate for your advice and help!
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Artist~. I have terrrible shoulder pain from a prior injury. (As if stage four cancer wasn't enough) and my palliative care doctor gave me 5% lidocaine patches, to place on my skin where my pain is around my shoulder base and flat arm area. I cut them I half and place them around my neck on my shoulder and it works wonders. I wonder if something like that may help. I am sure White knuckle driving on the mountain road isn't helping!!!! I hope it feels better soon! They also have 5% ointment that also works wonders!
~M~
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MymomisstageIV, without seeing your Mom's scans, it would be a bit unusual for mets to be in your Mom's joints, especially multiple joints. Depending on how long she was on Faslodex, my first thought is that the Faslodex was possibly the culprit, in which case something to minimize the joint pain might have been considered, rather than changing meds IF the Faslodex was still working, which you didn't say. Very difficult to tell from a brief description, but many women do suffer with severe joint pain on any of the meds that basically block our normal estrogen. The fact that the pain has gotten worse with Taxotere is a bit confusing. Is it in all her joints? Is your Mom on anything else -- another type of med, perhaps -- that could be causing the joint pain? And yes, tumor flare, especially at the start of a new med often happens and can be a good sign.
MomATT, I have a local onc (in addition to UCLA), so labs are done here. He started me at just one 500 mg. pill per day, which I know is a bit unusual, planning to titrate up to hopefully 2000 per day. Fingers crossed...
Wendy, there are plenty of women living years with liver mets, so try not to let one patient's situation get too much into your head. The Thriving MBC group on FB has quite a few 15+ and 20+ year survivors, including some with liver mets. Like everything else about this stupid disease, it's such an individual thing. I pray that woman's onc will find something that works for her quickly.
And speaking of liver mets... I have a question I've asked elsewhere but am still trying to figure out. Does anyone with liver mets use any liver cleansing herbal supplements or teas? Until now, I've used a detox tea I've felt good about, and actually had cut back on it just before this liver stuff started, so not sure it wasn't maybe helping when I was using it nightly. So now that I know something else is going on there, I don't know if I should or shouldn't use anything -- not that I think it will impact the mbc cells, but to prevent toxic build up from Xeloda or other meds. Thoughts??? (I'm going to pose this question in my Thriving With MBC FB group as well.)
Happy new week to everyone!
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