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Thank you all...it is probably the Tamoxifen and bone pain. Today both hurt and I figure it's that.
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regular claritin can help with bone pain. It did for me from having neulasta shots after chemo.
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Pajim and Dlb thank you both so much for your responses.
Pajim, you are correct about the type of trial. I'll look to see if I can find the abstract from San Antonio. I've looked around a fair amount online and haven't found much information about this drug. I would have thought that she would have had to have the mutation to be eligible for the trial too. Before she started the trial they did genetic testing on the cancer not just on her. The profile of the cancer was to look for additional trials, and to build up a broader database of cancer information. Nothing remarkable showed up in this test. I think mentally I have mixed the results of that testing with other testing that's been done. I know when she first went through genetic testing for herself that she didn't have any of the genetic markers that indicated breast cancer would be likely. I realize now that those results don't provide clarity about whether or not she has the gene which indicates Pi3K inhibitors would be helpful. We'll talk with her oncologist about this in 2 weeks.
In reading your response this really stood out to me:
"To me quality of life matters. A full day in the hospital plus another day in bed every week as your first treatment is a lot. This is the time when you should be living well. As the cancer gets worse the treatments get harder."
I think the first two times she went through Chemo the Dr.s emphasized that this was going to be a hard period. It was going to kind of suck, but that was all part of trying to rid her body of cancer to reduce the chance of recurrence. I think going into this trial there was still a bit of our mindset event though the Dr.s had shifted to talking about quality of life. 9 months in though, she's looking at it this really the way I want to live. It's definitely something we are weighing now.
To your point about talking with the Oncologist, in our meeting with them earlier this week. My wife was expressing her concerns and the Onc seemed almost like she was eager for us to drop the trial.
DLB , It is a phase 2 study so I haven't been able to find much information about it. Searching on this board there are not many mentions of the particular study drug she is on.
Thank you again both for your thoughtful responses. When my wife was first diagnosed many years ago she got some advice from a slightly older woman who's quite and inspiration. That women had stage 4 bc and is now running triathalons and marathons. Her advise was to do whatever it took to try and stay in a positive head space. She recommended we do that by having me filter some of the negative information before it gets to my wife. We did that for both of the prior rounds and it worked well. It's been a little harder this time, but we are still doing something similar this time.
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I hope it is okay for me to post here. My family member just received news that her ER+ breast cancer has metastasized to her liver, chest wall, lymph nodes, spine, pelvis, etc. There are more locations/specifics, but I don't want to ask her to go through the whole list with me when I know she's had to do it again & again. Now they are checking to see if she has mets in her brain. This summer she was diagnosed with late stage III breast cancer. She had a radical mastectomy w/ clear margins, hormonal treatment, & combination chemo including herceptin I believe. She just stopped chemo a few weeks ago & was gearing up for radiation & now finds out that it has metastasized "everywhere." I just don't understand how this happens. I assume she didn't respond to the chemo & it was growing all that time? I'm not sure, I'm really lost for words. Is there any hope with that many mets that she could stabilize or have some regression in her metastasizes?
I guess I'm here to ask how I can support her. I live far away. We've been in contact throughout her treatment & I've tried to be present, but not overwhelm her. Our family is caring, but they tend to overwhelm in their caring & she's just been so exhausted keeping up with everyone & taking care of herself.
How do I support her from so far away? Is there anything you wish someone had said or did for you when you got your diagnosis? Any ideas on how I can support her two young kids (6 & 11)? I would ask her what would be helpful, but she's told me that everyone asks that & she never knows what to tell them.
I guess what I hope she knows is that I'll support her in any decision she makes about her care, that I love her, and that I love her kids & will always do my best to support them, but I'm not sure if any of those things are appropriate to say.
Idk. I'm just in shock. I hate to think of her in pain, at all, let alone getting this news & still waiting for more tests/more information with no current plan in place..
Any feedback is welcomed, but not expected of course.
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Dear redpoppyx
How devastating for you all. Your family member with cancer is very fortunate to have you. It seems trite to say just be there for her but that is my advice. Just let her know you are there to care, help, support in whatever way you can and whatever manner she wants. I have family, friends and a small community who have made the last year doable. I have a work colleague who sends me random texts with emojis (flowers, sunshine, clover) just to let me know she is thinking of me. No need to reply but I know she is there if I need her. It is a tortuous time and everyone reacts in their own way. If you find it difficult to speak with her maybe write her a letter and express how you feel. It is wonderful that you can be there for her and her family. Everyone is affected by this horrible disease. The uncertainty is a big challenge and can be very frightening. Let her guide you but don't let too much time pass without telling her how much you care.0 -
First, dlb, wow, I have never heard of “conditional survival" and find your chart fascinating! As I'm 8+ years with mbc, I find great hope in the study and am happy to have a phrase to explain to people how long term survival with mbc may possibly work.
Helen, you need to check around and see where you can be seen by a doctor about your swelling, ect. Do you have a general practitioner you go to? Take your concerns there to start with—the cost will be worth it to get some general direction, and someone on that staff may be able to help with insurance matters. The important thing is you take action on your behalf.
Trike, you sound like a loving, caring husband. The ultimate choices in your wife's treament remain with her. Ask her what both her heart and her mind are telling her. You can give advice and explain how things look from your perspective, and then honor her by telling her you will support the choices she makes. She has to be making the decisions she thinks & feels are best according to what she wants and not making decisions she thinks you want, and I say that with all kindness. This way, you empower her and that, in my opinion, is extremely important. This is her life and so she has the final say. And tho you want to weigh the onc's medical insight, it's not even the onc's opinion that matters here most. There's not really a “right" or “wrong" choice. It's professional medical information along with advice and insight from trusted people (you) combined with her own intuition—what her gut is telling her—that will guide her in the direction she thinks is best.
Redpoppy, when I was first diagnosed, my sister's friend, who'd dealt with bc, sent me a card every month or so. It was a non-invasive way of letting me know I was being thought of and prayed for. I received a card from others that of course I appreciated, but she sent numerous ones and I thought it was very kind of her. Also, I received a nice gift set of hand creme in the mail from a friend, and a young woman from work made me the most beautiful felt blanket. So sending a small gift would also be a nice gesture, slippers or a book (nothing about bc tho) or a gift card to rent movies from Amazon.
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Redpoppy...I’m so sorry to hear of another situation with MBC. When I was diagnosed the first time with BC, we had supportive people in our community and at church who brought food/dinner for our family ever so often. That was a relief, of one more thing I didn’t have to think of on that day. If you live far away, gift cards to restaurants so the husband or someone could stop to grab dinner on the way home, flowers, or even gift cards for cleaning services are very useful, as you usually don’t feel up to doing much when on treatments. That was my experience anyway. If you could find a home delivery service for prepared food would probably be very much appreciated. I’m just throwing out suggestions that we appreciated so very much when I was first on “the bad” treatments. The suggested cards is always a good idea. I’ll be praying for her, her family and you for healing, peace and understanding.
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Trike...what is the name of the drug? One of our best friends is a manager over drug trials and testing here in TN. He might have some information I could relay
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*also....they are making great strides with “Proton Therapy” here in Northeast Tn in Knoxville. If interested, just search “proton therapy”.
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redpoppyx, I'm so sorry about your family member's mbc diagnosis. You've already gotten some great suggestions and advice here. I truly believe there is always hope, especially for someone just starting down the mbc path, because there are many treatment options she hasn't tried yet. If I could give her any advice, it would be to seek care at a major medical center vs. being treated locally. I say this because the larger university teaching hospitals see the most mbc patients, so will not be overly negative about her situation, but will offer her realistic hope, including a thorough workup to determine the best course of action going forward. I could be wrong, but I suspect her progression didn't totally happen while she was getting the treatment she already has, but may have been there and missed wherever she's being treated now, especially if they didn't do a PET scan prior to starting chemo. So I would strongly advocate for at least getting an opinion at one of the places on the list I'll link below -- even if she then takes that information back to a local team to facilitate. And I think it's wonderful that you are reaching out here for support. Please keep us posted.
https://www.cancer.gov/research/nci-role/cancer-ce...
Divine, glad you found that chart encouraging. I've just passed 5 years, and I sure did!!!!!!! Deanna
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I have a question. My mom is almost 8 years out of a stage 2, grade 3 cancer dx. Er+ so she’s been on Armidex this whole time and has dealt with a ton of joint pain. Two months ago, she had her labs done and her oncologist commented on how great they were...they were the best they’ve been. Two weeks ago, she started getting low back pain. It’s constant & just feels like a “dull ache”. I talked Her into calling her oncologist and she’s has a PET scan scheduled for next week. I’m praying it’s nothing serious but I’m so glad her dr is being proactive. Are the recent great Labs meaningless???
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I don't put any weight in lab results as an indicator of cancer status (unless you mean tumor markers, which can be a good predictor for some but not all people). My labs have never wavered - when I had my first go with IBC with fast-growing tumors, extensive mets throughout my skeleton, liver, chest wall, skin and lymph nodes, my labs were perfect. Throughout multiple rounds of chemo, not a blip in my labs, always perfect. IBC is raging again and still my labs are perfect. The only thing I think they are good for is watching for adverse affects of treatment, or watching for things like a problem with liver function.
Lower back pain doesn't necessarily mean that the cancer has returned or progressed, especially for those of us over 50. Since I've had extensive mets throughout my skeleton I recently had a scare when I had lower back pain that lasted a couple weeks. Turns out it was just age-related back pain due to muscles not bone, my MO prescribed a muscle relaxer and in a couple days I was good as new. Any pain is scary when you're dealing with cancer, and it's a good idea to get it checked out if it persists for a few weeks. It's hard to teach ourselves not to immediately think of cancer every time we have some pain, we forget that we used to get aches and pains prior to our diagnosis and hardly gave it a thought, after cancer our minds immediately jump to worse case scenario.
It's good that her MO is taking it seriously, but hopefully it's something minor for your Mom too.
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dlb823, I like that Conditional Survival chart! I'm only one year last MBC dx bit those statistics are encouraging, even while I also know how statistics work.
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Thank you Helen
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Hi everyone and thanks for this thread. I was wondering if anyone was diagnosed by way of a large liver mass?
I have a benign kidney tumour called an AML that was diagnosed incidentally in June of 2017 when I had a CT scan for something else. It has to be monitored because the size is borderline and they can hemorrhage. In April of 2018 my CT scan showed my AML was stable and everything else clear including my liver.
Fast forward to two weeks ago when my new urologist (I moved to a new state) suggested we do an MRI. The kidney is the same but I have a 5 cm liver mass that needs further testing. BTW all scans I've had used contrast so this was definitely not on the April scan.
If course I am nervous. After reading about liver cancer i don't seem to be a candidate for that but who knows. I'm concerned about Breast or Ovarian metastasis. I have no history of either but am one month late for my annual mammogram. After reading up here I know that mammograms are not dispositive anyway.
Anyone else diagnosed by a totally asymptomatic large liver mass? Bloodwork done in late Nov was all normal. Thanks again this forum is so informative.
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RowWell...you might get more information on a liver cancer thread. I’m sure there’s probably one on here. I’m sorry I don’t have any answers. Hug
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Thank you Tennessee. You've been more responsive then my doctors!
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RowWell...you’re very welcome! I’m sorry about your doctors. When I first started going to onco, I recorded everything so I could listen to it again at home if I missed something. I also took a list of questions. I hope you get answers soon. Hugs... you’re in my prayers
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RowWellandLive, as TNMTNGAL said, here is a topic that you may find interesting: Topic: How are people with liver mets doing?
Hope it helps!
The Mods
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thanks moderators. I didn't think I was able to post there without a diagnosis of anything.
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Hello everyone,
I would like to ask about inflammatory breast cancer recurrence. I had completed radiation on my left mastectomy January 31, 2017. I still have tissue expander in not sure yet if I will do reconstruction. Since then I have taken antibiotic in May 2017 for mild cellulitis. Then in December 2018, I got some rash again on the left on TE. It started with some small red spots and I've sent pics to Dr. His nurse practitioner said just keep the area clean and monitor it. So in January 22, 2019 I went in to see the PS and at that time the rash kind of smudge out. There's absolutely no pain and no itching where the rash is. The PS did biopsy for IBC, varicella, and some other bacteria. I'm waiting for results. I'm just scared if it will be IBC. Does anyone have experience with similar situation and IBC? Thank you all and god bless.
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I had a rash on an off for awhile after my treatment. Little red spots. They came and went on my chest, then sometimes on my face and feet. Eventually they went away. Every now and again they pop up. I went to a Dermatologist (Dr), gave me a cream (mild antibiotic I think). I still get the occasional red dot now and again. Wasn't IBC or anything like that. Never got a real diagnosis of what it was.
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I have a question... was anyone's recurrence initially discovered via increased tumor markers (CA 27-29 or CEA)? My CA-27-29 jumped from 31 to 67 and my CEA jumped from 1.1 to 11.8. I am having scans later this week.
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Lori, that would be pretty rare. It's rare that MOs monitor tumor markers in women who are thought to be in remission or cured. Most women are found to have mets either because (a) they have symptoms or (b) a scan was done for some other reason and Lo!
I hope that your rise in TMs are due to some infectious or other process.
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Lori, yes, my recurrence was initially found by rising tumor markers in my CA 27-29! I had no symptoms. After almost 6 1/2 years of TMs in the normal range (tested every 3 months, I believe) after original diagnosis and subsequent treatment, the TM # creeped up 25-30 points out of the normal range. After seeing the rising TMs, we did all kinds of scans and couldn’t find where the cancer had returned. Finally did a bone marrow biopsy, and it was found there. I started on Faslodex shots and less than 3 months later, my duodenum was 100% blocked. It had come back in my stomach.
I have ILC (invasive lobular cancer), which is not easily found on scans, and originally diagnosed at Stage IIIC, so it was in my lymph nodes at initial diagnosis. To this day, my TMs continue to be an accurate indicator of progression. (Of course, this is not true for everyone but has always been for me in the 11 1/2 years since original diagnosis.) I’m thankful my TMs have been an accurate indicator of progression, as ILC can be truly difficult to monitor!
I just wanted you to know my experience. I wish you the best and hope your unusually high TMs are due to something other than a recurrence, which is also entirely possible.
Hugs, Southern
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Lori, yes... but my TMs were only checked because I went to my onc after a couple of trips to Urgent Care didn't help the mysterious flu/bronchitis type illness I had at the time, so I finally decided I'd better see if there was something else going on, which there was. But my CA27-29 had jumped from 10 to 155 -- so considerably more than yours.
Good luck with the scan! Sorry you need one, but best to have peace of mind, and hopefully the rise in TMs will be attributed to something else you maybe haven't thought of. Hugs, Deanna
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Thanks everyone for responding. My tumor markers have been consistent for over 6 years. I have them checked every 6 mos. My CA 27-29 was 41 when I was diagnosed stage 2b with lymphatic invasion. It has always hovered between 31 and 35. Once it went to 39 when they changed labs. My CEA has never gone past 4. When I was in for my 6 mo appointment, I was asking him what early lung mets felt like. I have had a slight pain in my lungs and a funky cough, mostly at night. He didn't think it sounded like anything to worry about. Then two days later he calls which he has never done in all our years together, The CEA worries me more than the CA 27-29.
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my mo doesn't do tumor markers. Says not reliable. Glad she doesn't. Goes by symptoms. If longer than 2 or 3 weeks without conventional relief, then it's check time.
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Brain MRI clear... now we wait to have pet scan on Friday.
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I apologize for posting in an incorrect thread. I just rec'd my followup Invitae report show Variance of RAD50. I am the 4th generation to be diagnosed with b.c. My maternalGr.G.M.., maternalG.M., Mother, Mother's first cousin, and my second cousin, all b.c. Does anyone have any connection to or futher info on RAD50 genetic mutation? I just had a mastectomy last Wed. Waiting on pathology report. Thank you.
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