If you are not Stage IV but have questions, you may post here
Comments
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Hi Esmeralda, so sorry you are having all that pain and discomfort. First of all a little encouragement........I have had bone mets for almost ten years......I'm still here, still living life to the full, driving long distances, going on overseas trips......basically having a blast. What I'm trying to say is, even if you have bone mets you may still have years and years before you need to start thinking about your death.
I'm glad you are seeking information on you pain and honestly, I'm not a doctor by the way, but what you are describing is more like injury than mets. For starters, for me, it was more pain at night, enough to stop me from sleeping. In the day, it was a constant deep ache that did not respond to over the counter pain meds.
Chin up lovely, you have a lot of living to do yet so dry your tears, seek out the medical help to get those answers so you can put your mind at ease.
Love n hugs. Chrissy
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Esmeralda-I was diagnosed de novo in July 2017 bone mets only. I never had an ache or pain. I was waitressing 4-5 nights a week from 4-10pm. I felt great. The only symptom I had was fatigue. I was very tired especially in the morning. I would bring my three kids to school and come home and nap for a few hours. Then I had a lump pop up in my right underarm and a lump in my breast shortly after. Yours sounds more like an injury but definitely get it checked out. I never apologize for going to the doctor. Don’t let anyone shame you for worrying too much. We’re here if you need us.
Jill
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Thank you so much, Chrissy and Jill! Chrissy, I have followed you for years, as you are such a comfort to others facing this battle. You are an incredible inspiration to us all! I so appreciate you chiming in and offering support. And you, Jill! Thank you so much. Yes, I do try and take solace in that all my pain seems to go away at night. Though I know nothing can offer 100% assurance. I’ve been agonizing over this for so long - I’m frustrated that even after today (just a clinic appointment) I won’t have any any answers - any scans or tests will still be days/weeks away. (Happy holidays! Ugh.) I know my onco will dictate - but do any of you have any perspective on what scan would be best to offer the most accurate findings? Blessings to you all. (Also, just FYI,my name is Jen, Esmerelda was my dad’s nickname for me.)
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Jen, for my bone mets I have nuclear bone scans done. The mets light up like a Christmas tree as my onc puts it. Here is Australia Pet scans are not used that much but I have heard that in the USA Pets are used in conjunction with the bone scan. I also know that your Medical Insurance is a lot different as well so they may only approve the nuclear bone scan. Which ever happens eventually you will get some answers.
Thank you for your compliment, Jen, much appreciated.
Love n hugs. Chrissy
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Jen-CT scans seem to work for me. I remember how happy I was when my surgeon at a weekly appointment after my lumpectomy said my bone scan was clear. But in the next breath he said “but the CT scan shows a few spots on your spine” Because the spots were less than a centimeter and they were lytic they didn’t show up on the bone scan. I’ve only had one PET and it didn’t offer much more than the CT scan did.
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Esmerelda-Sounds like nerve pain to me. Maybe from compression of the spine? Not sure, but it does not sound like the pain I experienced when diagnosed with bone mets. Best of luck, MJH
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Hi to you all,
I was diagnosed with breast cancer at the end of the August this year. The operation was in mid-September (2cm diameter). At the beginning of November I received the first dose of chemotherapy. It should take another dose for 4 days. I'm worried since last 2-3 days I have elevated temperature and last 10 days cough. Tumor markers are normal all the time, and all lymph nodes were clean after surgery. Is it possible that lung metastasis will occur in such a short time?
How much are tumor markers reliable in the context of disease spreading to distant organs?
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Dear Bez, it is more likely that you are having side effects due to chemo. You should call your oncologist and let them know that you are having these symptoms so they can treat you before your next chemo. I also had a bad cough following taxotere, so I can relate.
Take care!!
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Hi Beznaranca, it seems much more likely that your symptoms are either due to a virus or a side-effect of the chemo you received last month. I don't know what drug you are taking but did your cancer center tell you to call if you have a fever (usually more than 100.5F)? That's pretty standard. You should call in and tell them.
Did they do a scan before surgery to make sure you didn't have mets? If that was clean I would fall out of my chair in surprise if you had mets now.
Tumor markers are reliable for some women most of the time and for some women none of the time.
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Thank you for your answers.
I'm taking AC mix of chemo for now, cough started 5-7 days after first dose, and started to be a little rougher after 2 weeks, in the same time as i got 37.5 degrees temperature.
After 3-4 days temperature is gone but cough is still here.
They did MRI of both breasts and chest wall before surgery, everything was clean.
Surgeon said tnat PET-CT is not necessary, that I should do it after chemo
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Beznaranca do you have asthma at all? I have activity enduced asthma and before chemo I used my inhaler about 4 times ever. It is a very mild kind of asthma. I noticed during AC I developed a mild cough, but ended up in the ER due to acute acerbation of my asthma. I did also get a fever after each infusion a few days out, usually around night time, but it went away within a few days. I used iced packs, cool showers and Tylenol to keep the fever down.
That said you know your body best so if you feel like something is wrong then better safe than sorry.0 -
No, I didn't have any signs of asthma in my life
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This week they found new spots in my lungs on my dec scan that are highly suspected to be mets. Pneumologist said that it looked like mets. I’m expecting to get stage iv diagnosis this week after my lung biopsy.
I’ve been on chemo a lot this year. I’ve got 3 taxotere, 1 CEF and 12 taxol. Pathology indicated my cancer is not responsive to chemo yet they give it to me along with herceptin and perjeta. I’ve had a recurrence at the start of the year when they stopped herceptin to give me CEF. Again I’m having a recurrence after they’ve stopped herceptin.
Are there stage iv ladies running exclusively off targeted therapies? I don’t think I can do chemo right away again... I need some time
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I'm so sorry to hear that they suspect lung mets dya, keeping my fingers crossed that the spots turn out to be something benign.
There are several women here who have been on only Herceptin or Herceptin & Perjeta long term, 7-10 years. As my MO says, it's a maintenance treatment and as long as your mets are stable and not causing any problems (or you are NED) you can stay on it as long as it works. If your mets are growing and causing trouble, then it's time to consider other treatment. That doesn't always mean systemic treatment (chemo), if the rest of you is responding well to targeted therapy there are usually options for localized treatment of mets if they are causing problems. As a general rule of thumb, if the mets are small and not causing any symptoms, there's no need to rush into a change of treatment. At Stage IV it's all about quality of life.
You might want to look into Kadcyla (f not now, for the future), which is a targeted therapy that combines Herceptin with emtansine. It seems to be fairly easy to tolerate, more so than a harsher chemo. I'll be moving to that next when I finish this round of Taxol. I seem to be the opposite of you - my mets respond very well to H&P (my liver mets have completely resolved on H&P) but when I stopped chemo I had a primary recurrence. Kadcyla seems to be the best of both worlds (hopefully).
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DVA
I had a reoccurrence less than a month off of herceptin.
It went to my skin. My battle is fruitless.
They told me I was Her 2 + then they said I was Her 2-.
Im sorry to hear this. I'm waiting for xeloda to work. Do Genetic dna testing if you haven't already.
I seemed to be resistant to everthing no remission just progression. Hang in there. Never dreamed of this and no one every really goes there to elaborate or think outside the standardized care.
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I have posted twice in the last 5+ years and fortunately I have had no need for support in quite awhile. I just again want to thank you all for the support and service you offer to this community. I find it so admirable and may you know what a difference you make to many. Bless you.
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Hi funthing,
I did do genetic testing since I got diagnosed at 36. They did not find any known mutation or variation
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Thank you for opening this section and answering some questions.
I was wondering how much impact the location of mets has on prognosis. I get the impression that a lot of the very long term survivors started with and mostly stayed with bone mets. My mother died of de novo stage IV, however about 20 years ago, and it had already metastasized to the brain by the time she caught it. She survived less than two years from diagnosis. Is there anything to this impression I've got?
As I learn more, I am sort of constantly surprised by how diverse breast cancer is. I guess I wonder how is stage IV kind of subdivided (like we get a's and b's in the earlier stages now) and how much it has to do with location of mets, versus hormonal/genetic components of metastatic tumors, etc.
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Salamandra, even though it was 20 years ago, I'm so sorry to hear that you lost your mother to mbc.
There are actually a couple of factors that influence long range survival after an mbc dx. The first is how a patient responds to meds, but as you suspect, location of mets is also a factor. Newer stats show that many with bone only mets are surviving considerably longer than previously quoted averages. 10+ years is not uncommon. And if the mets is in one or just a few locations (ogliometastatic disease), the goal can be "cure" (although we realize that is a fluid situation) vs. control.
This Consumer Reports link re. increased survival with mbc is based on a 2017 NCI study.
https://www.consumerreports.org/breast-cancer/wome...
And the following probability statistics were recently compiled from information in the SEER database.
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First of all, thank you for this opportunity to ask questions. This is my first post ever but I have drawn strength and had lost any feelings of being alone in my quest. On this site in general- I could type in what I was thinking and find threads that affirmed things for me along the way. I think that I might have the sign off like everyone else because I typed in my info when I finally signed up- but just in case- I was dx with triple negative invasive ductal carcinoma stage 3 grade 3 locally metastasized left breast cancer on Aug 3, 2016. I did 12 wks of weekly taxol/carbo and then 8 weeks of AC Double mastectomy and spacers then implants. Only went to a few appts for blood work before my insurance dropped me. Ok so here is my question. I have had shoulder pain on and off for a year or so. Within the last couple months I cannot straighten my right arm fully. I am puffy but less so than with all the steroids- take no meds now - none since the mx. recovery pain meds. I can tell my neck is thick and my body is way different, and I am trying not to be a 'fraidy cat. My grandson and I were lying on the couch watching tv and he put his hand on my ribcage to push himself up to go play (he is 3) and I felt like a rib cracked. That is not normal. I have been depressed or just out of energy for too long. And my boyfriend noticed when I showed him the swelling in my neck is so bad that you can't see my clavicle anymore- you can feel it but it is swollen above it and quite obviously. I think it's lymphedema but why in my neck? Not having insurance or stable work is keeping me from seeing a doctor. My very long leading up to is this question- does anything you read here remind anyone of symptoms I need to be concerned about? Again - thank you for letting me ask -R
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First of all, thank you for this opportunity to ask questions. This is my first post ever but I have drawn strength and had lost any feelings of being alone in my quest. On this site in general- I could type in what I was thinking and find threads that affirmed things for me along the way. I think that I might have the sign off like everyone else because I typed in my info when I finally signed up- but just in case- I was dx with triple negative invasive ductal carcinoma stage 3 grade 3 locally metastasized left breast cancer on Aug 3, 2016. I did 12 wks of weekly taxol/carbo and then 8 weeks of AC Double mastectomy and spacers then implants. Only went to a few appts for blood work before my insurance dropped me. Ok so here is my question. I have had shoulder pain on and off for a year or so. Within the last couple months I cannot straighten my right arm fully. I am puffy but less so than with all the steroids- take no meds now - none since the mx. recovery pain meds. I can tell my neck is thick and my body is way different, and I am trying not to be a 'fraidy cat. My grandson and I were lying on the couch watching tv and he put his hand on my ribcage to push himself up to go play (he is 3) and I felt like a rib cracked. That is not normal. I have been depressed or just out of energy for too long. And my boyfriend noticed when I showed him the swelling in my neck is so bad that you can't see my clavicle anymore- you can feel it but it is swollen above it and quite obviously. I think it's lymphedema but why in my neck? Not having insurance or stable work is keeping me from seeing a doctor. My very long leading up to is this question- does anything you read here remind anyone of symptoms I need to be concerned about? Again - thank you for letting me ask. Thank you, Thatone Chick
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Hello That one chick,
I am very sorry to hear that insurance / money issues are preventing you from seeing a doctor and you have questions that need to be asked to a doctor. Swelling could be lymphedema or nodes or something else. I have had sore ribs post radiation and have heard of ribs cracking. I believe a broken rib can be very very painful.
Is there a breast care nurse or a general practitioner you could see? In my opinion you need to be examined by a doctor or breast care practitioner because they are the only people who are going to be able to diagnose your symptoms and alleviate your worry.
Thinking of you.
Helen.0 -
Hi there I'm writing this on behalf of my wife. She's 43 and dealing with her 3rd round of breast cancer. She was first diagnosed with Stage 3 ER+ breast cancer about 10 years ago. Because of her age that was treated aggressively (chemo, radiation, Double Mast, and ovaries removed) . About 3 years ago she was diagnosed again ( I don't have breasts anymore, how do I get breast cancer again? was her initial thought) She went through surgery, chemo and radiation again. About a year ago she went in for a prolonged cough. Test revealed that the breast cancer was back and that she now had Lung, Liver, Spine, Rib, and Skull mets.
About 9 months ago she was able to get on a clinical trial. (I am not sharing the drug name because I am not sure if we are under NDA). She's been undergoing a weekly infusion of a trial drug with two other drugs that would be considered the standard of care. The result up to this point have been good. The cancer in the soft tissue is gone (although there are a couple of areas they are still watching). The bone mets haven't shown any progression, but they aren't showing much improvement. Drs said that this is too be expected, and that it could be working without it showing improvement on the bone scans.
Here's the issue where we'd love feedback from others: The trial is really draining on my wife. It means she spends at least 6 hours a week in the hospital, The trial drug also drains her energy for about 48 hours post infusion. Also in general on the weeks when her wbc counts are too low to get the trial drug she feels much better. The Dr.s aren't confident that the trial drug has done anything to this point. That's to be expected though.
Would you continue on the trial?
What we've been talking about with the Drs is whether the unknown potential lifespan gain outweighs the diminished quality of life in the short term.
Are there other things we should be asking the Drs?
Right now the outstanding questions I have are:
Does my wife have the genetic markers that indicate the trial would likely be successful for her? (I think the answer is no but I need to confirm)
If she doesn't have the genetic markers how likely is it that the trial drug is making an impact?
Thanks for you consideration in reading this and I'd appreciate any input.0 -
IamTrike, just some random thoughts... As you pointed out, trials for mbc usually use an existing standard of care drug or drug combo, plus an additional drug. So until trial results are in, there's no way of telling if the added drug is doing anything above and beyond what the standard of care regimen would have accomplished. Do you know and can you tell us what the standard of care meds are in this trial?
Has your wife had a Foundation One or similar genomic test done? They can be very helpful, but they're not infallible because meds that come up as viable options for a patient in vitro may not work exactly the same in our complex bodies. But the Foundation One or Caris are both easy (blood) tests to have done, and you would have those results in a couple of weeks. Do you know which genetic markers the trial drug targets? Some markers are fairly common; others are not.
My other thought is... There are a good number of often very successful regimens for mbc aside from trials, but virtually all mbc meds have some SEs, so even if your wife was to go only with the standard of care she's now on, or another regimen, unfortunately, none are without SEs. But she would be able to drop the constant hospital visits for monitoring.
I know I haven't given you an answer or even a strong opinion, but just tried to throw out some thoughts that might help you and your wife figure this out.
Glad your wife is responding well to her tx! Best to you both! Deanna
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Hi guys, I wanted to ask a quick question. I sometimes have a dull ache in my shin bone... and am not really an exerciser, so didn't get hurt recently. The ache comes and goes but is always in the same spot. No lump there. I talked to my MO, and she said if It were to be mets, I wouldn't get it in my lower extremities first, so it's a shin splint or something like that. She said in her 20 years of being an oncologist, she's never had a case where mets appears first in the shins. Someone else told me this as well about a year ago when I brought it up, and again, it's only occasionally, not constant. Do any of you have further info on the whole lower extremities met area thing? thoughts?
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not stage 4 but when i fhought i may have rib mets my mo said the pain would be deep and constant.
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Thanks DLB
Her standard of care drugs are Ibrance and Faslodex. She has had two rounds of genetic testing, I need to check what the most recent round was called. I believe that round was used to identify what trials she would be eligible for. I remember that she didn't have anything that was remarkable in the either round of testing.
In this weeks meeting with the Oncologist. The oncologist confirmed that the lethargy was a result of the trial drug. She basically sleeps lays in bed for 24 hours after her infusion of the trial drug. The Oncologist told us that they have to weigh a definite quality of life improvement against an unknown improvement in life expectancy. It felt like the Oncologist was encouraging her to drop the trial, without explicitly stating that. Part of me wonders if we haven't asked the right question. I believe there is a genetic marker that's can be used as an indicator that this trial drug will block the pathway that the cancer develops on. I think my wife does not have this marker. I want to ask if she doesn't have that marker, how likely is it that this trial drug will actually help.
I think we grapsed for anything that could be a lifeline early on not really weighing the the likelihood of it having an impact. Now that we can see a quality of life impact I think we are weighing those costs against the potential benefit. I know there aren't any guaranteed outcomes.we're just trying to make the best possible decision knowing that there is a good chance that at some point in the future we'll likely be looking back and second guessing every decision we made up to that point.
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Lisey, I was told by my onc that mets below the knee are very very rare. He's been at this 20+ years and has seen maybe a handful of cases.
I'd go for the shin splints.
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IamTrike, as you realize, you can pull out of the trial at any time. And side-effects really matter.
I assume now that this is the trial with the PI3K inhibitor. It's a funny thing about that drug. You'd think it would work more for people who have a mutation, but this one doesn't seem to be that way. There was an abstract at the last San Antonio Conference about it.
But. Yes in general if you don't have the mutation you won't respond. Most of the trials require you to have the mutation before you can enter it? This one didn't?
If you want to pull out of the trial here's something to consider. Your wife has had 9 months of the drug. If it does have benefit, she has already received some of that benefit. Maybe most of it, who knows?
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.
Why not go into the oncologist and say, "this is awful, I want out. Tell me why I should stay in." If he or she has some good reasons you can weigh them. If he or she agrees with you but didn't want to influence you, they'll be right on board.
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IamTrike, Faslodex + Ibrance is a great combo on it's own. I was on it for 18 mos, and many patients stay on it much longer without progression.
Yes, knowing the pathway used by the trial drug vs. your wife's genomic variants would be helpful. (Looks like pajim may have just given it to you, along with some great advice.)
Is this a Phase 2 or Phase 3 trial? If Phase 3, you might want to hunt (if you haven't already) for a summary of Phase 2 results. It might contain some PFS stats that could influence your thinking.
Lisey, I think if your shin pain was untreated mets, it would be worsening. Bone pain is a listed SE for Tamoxifen. My guess is that it's from that. But if it continues to worry you or the pain worsens, asking for some sort of imaging -- maybe an MRI -- to help clarify the cause, would not be unreasonable.
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