Bone Mets Thread
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Mary, I am also in Colorado. I have Kaiser insurance. Many people will tell you that that is not good. However,my oncologist is the chief of oncology for co. Kaiser. In less than two years,I am NED!!
His name is DeSilva,I have never had any complaints. Z said that my unusual result must mean that I am doing something exceptional,I am not. I just had an exceptionally unusual response to tamoxifen. For that I thank my dear lord and savior,Jesus Christ. Just being honest. Sorry if my religious thoughts offends anyone. But seriously!!!! PTL
Chelle.
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I totally agree with everything the ladies have said. Our will to live is the most important part of any tx. My oncologist said from the beginning "His skill and my strong will" can give me many years! He has never put a number on my prognosis. All of the treatments have se's, It is our will,that gets us through them.
Gracie- I'm with you,brain MRI next week😬😳 my last brain scan in June did not show any mets,but it did find what looks like refractory epilepsy. An untreatable kind. I have not had a seizure since I was 8. So I have no reason to think that I will.they can take their little brain photos and shove them up...... I'm not dealing with epilepsy and stage IV!!!!!!
I hope Claudia won't mind my telling you that she is safe!!! Her home suffered minor damage!!!!
Love to each and every one of you!!!!❤️
Chelle.
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I think being a MO is probably a hard job especially for stage IV. Their primary job is to keep us alive and feeling well, but by the very nature of their job they are doomed to fail. So when we do well on a regime, it's a gain, but when we fail, it's like it is their failure to do their job. My MO is also very young which doesn't help I'm sure.
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Chelle I am right there with you and I praise God for your response. I have armies praying for me. We are boldly asking for a miracle.
Your doctor's attitude is exactly what I am looking for! I am not with Kaiser however.
I hope your husband is feeling better. He has been in my prayers.
Mary
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cive, I agree that our MO's have difficult jobs, and I have heard that there is a high burnout rate among oncologists. I keep them in my prayers. Of course, the fact that it is a difficult job does not give them the right to dismiss our concerns or treat us like lost causes. It is not easy to be a Stage IV patient, as we all know only too well. We have the right to receive the best possible treatment from caring, skilled physicians. It is up to us to find the MO who best fits our individual needs. This is not an easy task, and we must be willing to get a second opinion and/or change doctors if we are not comfortable with or confident in our MO. I wish things could be easier and more clearcut. We can educate ourselves, and read the suggestions from people here and elsewhere, but the final decision for treatment belongs to each of us. I, for one, do not have a medical degree, and although many people here do lots of research, only our doctors and we, ourselves, know all the medical facts of our own case. I listen to my MO's advice, and armed with my own limited knowledge, make that leap and decide what to do. I know what you mean when you say that an onc feels that a treatment failure is their failure. I would not want that responsibility.
Hugs and prayers, Lynne
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AMEN, Chelle! I praise the Lord that I'm still here with all my brain mets, hemorrhaging, etc. My RO and I met yesterday, and he's ASTOUNDED that I haven't been having seizures this whole time because of the large size (2 to 3 inches when converted from centimeters!!!!) of some of the brain mets. THAT'S GOD, people. (Sorry if I've offended my agnostic/aetheist sisters, but the Lord is my strength.)
I have Kaiser over here in California. No, it's not perfect, but the one thing I DO like is that I don't have to hassle with an OUTSIDE insurance company telling me which scans and meds I can have and which ones I can't have because of $$ concerns and coverage limits. The MO or RO just orders the test, and then I get a call to schedule it. Rx's are emailed in, and I pick them up without dramatic fanfare. If I had to argue, beg and plead with perfunctory telephone clerks in an insurance office, I think I would have blown these effin' brain mets out of my head with a Smith & Wesson by now.
Cheers,
L
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Mary, you've got this. Can't wait to hear the results from your visit with your MD Andersen MO.
Chelle and Lita, excited to hear your good news !
50s girl had my Zometa on Sept 11th. When Onc came into infusion room she talked about reading about the heroic rescues from the WTC. Then she said her oncology patients are heros also. I thought that was sweet of her.
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Hi Everyone, I'm sharing this article for those ER+ folks. There has been a discovery of a gene mutation in metastatic ER+ tumors which explains why we become drug resistant. This ESR1 mutation is found in many whose metastatic cancer becomes resistant to hormonal therapy. They have found that high doses of Tomoxifen can get around this. However the doses in mice are too high for human consumption. BUT if researchers know what is going on they will know what type of treatments to work on.
http://mobile.the-scientist.com/article/38155/decoding-breast-cancer-drug-resistance
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Sorry all that is a four year old article. I filtered wrong. But hope is still hope
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Lita I was chatting with a woman on a Facebook page for MBC and she was telling me she had numerous brain mets 15 and she did brain radiation and they are all dead. Took awhile but she is fine and doing well. Made me think of you of course 🤗 You got this I truly believe this
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that's great, wendy! That's what I'm hoping for too
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Oihikiu - not being curable is different than being terminal. Asthma isn't curable either, but properly treated, most people with asthma live long healthy lives...they're just on medication. So when the doctor says there is no cure, that's absolutely true, but some people live a long, long time with all sorts of mets.
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Babs - great news!
Chelle - really great news! The hot flashes seem to get better over time. (Yeah, I'm a year ahead of you, so not exactly an expert...YMMV) Now I'm also going through natural peri-menopause, so maybe the flashes are just getting better because of that? You can also ask your doctor for a vacation...mine thought it would take a minimum of six weeks to get out of my system to check my natural hormone levels. Earlier I had asked for a three week vacation because my knee was killing me and I wanted some relief for an actual vacation...it worked, and it hasn't been as sore since. The doctors had no problem with that. Oddly enough, after starting again after the six week break, I ended up getting side-effects I had forgotten about. (TMI, but the itchy crotch thing has been horrendous!) So I really do think the body adapts somewhat over time.
Zarovka - I'm surprised by your comment about tamoxifen. Several of us here are doing very well on just tamoxifen, and my oncologists have always said that it's very, very good. I know they prefer AI for bone mets, and I think that's because they don't create the same potential bone density problems, but in terms of controlling hormone sensitive cancer, I've only heard good things.
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Kathleen, I believe that I am also perimenopause. But it would be difficult to know for sure. I definitely have some pain issues on tamoxifen. But I will keep marching on!!! My Doc gave me gabapentin for the flashes,it helps a great deal!!!! Some of the other se's that you mentioned, are also very familiar to me. It's all doable,when they work!
I have always dreamed of living in rural Scotland! Probably due to my favorite authors description... Her name is Rosamunde Pilcher.
Love to all ❤️
Chelle.
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Lita, I really love my kaiser team!! I have had Kaiser,since I was a year old. They have bent over backwards to heal me many times. I had a childhood form of epilepsy. They had me at Denver children's hospital,seeing the best neurologist in the states. I have been seizure free since I was eight years old. I have never had a reason to complain...
I am praying hard for you every day! And they are working! Also praying that you are not awake at this hour to read this!!!! You need a good nights sleep 😴
Love Chelle.
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Milaandra, Chelle - Apparently, I know nothing of the capabilities of tamoxifen ... you guys have done so well on it. I need a different hormone suppression therapy than letrozol, or I need to get off of it. I should look at tamoxifen more closely.
>Z<
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Hi Ladies! Got good news today. Brain MRI is clear! They are thinking my headaches are from two mets, both on the left side of my skull, one I knew about, but one is on my left temporal area, the other on the left back behind my ear and they are thinking it is interfering with the muscles and tendons on that side of the neck. So good news! Thanks to everyone for your prayers and good thoughts and support
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Gracie - YESSSSSSSSSSS!!
One less scary thing to deal with. The headaches are still an issue, however. Anything they can offer to stop that bugger from jamming into your muscles and tendons.
In any case, exhale, go for a walk and do something relaxing.
Thanks for the good news.
>Z<
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Gracie, That is wonderful news. You must be so relieved. Do they have a plan to control the pain?
Hugs from, Lynne
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Gracie. Great news. Doing the happy dance for ya
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Hooray Gracie!!!!❤️❤️
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Gracie, are they going to radiate those areas? Bone/skull mets respond VERY well to rads.
It won't be the scary, whole brain stuff, that's for sure. Make sure you get the pain under control. That can be very debilitating.
Hugs,
L
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Gracie yippee this week has been a weekmofmlots of good news . Let's keep it going ladies
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Lynne I love what you wrote, right on target. It's hard to be a patient PERIOD. To be a stage IV patient and still manage to live life fully it's unimaginable. Of course I'd try to respect docs 😉 and due to my upbringing I do, but I don't really trust them, it's their job. The way I see it, docs let's say above 65yrs of age, with the old mentality of seeing a person as a whole and not just pieces, kinda get my trust a bit more.
Lita oh Lita I selfishly NEED you in my life. Stay away from the Smith & Wesson. You make my day girl!! Thank you.
JFV Onco was Humane. Stage IV people are unsung Heroes.
As with e/t else, it all depends. For Dani, at the time strong triple positive, Tamoxifen didn't do much at all. She was on it for a short time and then BAM was hit with mets. So….Btw D has the ESR1 mutation but the treatments directed to it, including Letrozole, Faslodex, Examestane, Anastrozole did not help her. She was on all the other stuff also, I am reading the F1 results and all the things that they recommend did not work for her, weird.
Gracie thumbs up, what a relief. Would the do rads for that area? What about Boswellia that so many people have been talkng about? It suppose to be very good for mets and for some pain relief. Dani will be asking Onco about it next week on her tx day.
Wendy so nice to see you feeling happy.
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Great news Gracie!! Hopefully they'll treat those skull mets soon and get rid of those rotten headaches!
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Gracie- just want to say I am gearing up for cyberknife on my left occipital lobe area where there is a skull met. The doctors keep telling me if I can't manage the pain with Tylenol they'll give me steroids. I will be having cyberknife surgery soon to kill this met since it is laying on an occipital nerve.
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Wonderful news Gracie! Hope you discover a great plan to address the headaches and get back to normal
Went for the local CO onc visit today and was told that the pharmacist doesn't like boswellia because it raises liver issues and also enhances the letrozole and Ibrance (like grapefruit). Dang! I need to look again to see whether benefits outweigh risks. So what now to address inflammation and brain stuff???
She also put in her notes that I refused radiation. What I had said was that I wondered how effective targeted radiation was with lobular cancer that looks Like a web instead of clear spots.
Now she wants to do a whole set of new scans. (Sigh). I went over to get the Xgeva injection and then went for a hike
Helen Hunt Falls in Cheyenne Canyon near Colorado Springs.
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Thank you everyone! Yes very relieved! He asked if I had enough painkillers on hand and we can discuss it further if it gets any worse. I can control it right now so am hoping the femera will start to shrink them some. This also answers the question of why my neck hurts so much when I'm laying down, because I sleep on that side. So there's why I can't get comfortable!!!
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I'll chime in here about the ESR1 mutation that sometimes accompanies progression on AI therapy that some of you are talking about- it is a mutation of the estrogen receptor itself, which causes ER (the estrogen receptor) to signal and turn on the genes that drive breast cancer cell growth in a permanent manner , rather than the way it would normally do it, which is only in the presence of estrogen. So the mutant ESR1 gene is like the driver of a runaway train that makes MBC cells grow whether or not any estrogen is around. It means that typical methods we use to lower estrogen levels in the body, like aromatase inhibitors or tamoxifen or ovary ablation, will not make any difference to the growth of ESR1 mutant cells (this is why they become resistant to treatment in the first place).
However, treatments that can degrade the estrogen receptor protein, like faslodex or SERDs, may still work.
But (there is always a but!) because the cancer cells had to mutate in order to grow under the conditions of deprived estrogen (thus getting the ESR1 mutation) they could also have gained other mutations as well that let them grow in the absence of estrogen- including other pathways that have nothing to do with the estrogen signaling pathway (the PI3K pathway is a common one). In such a case, the new cancer might have the ESR1 mutation but the growth may be from a totally different pathway, and in that case the cancer would also not be sensitive to faslodex or SERDS. Basically just because the ER gene mutated to ESR1, it does not mean that ESR1 is now driving the growth of those cells, so that is why you have to change treatment, and the new treatment may not work, because it is not clear what is driving the newly mutated cancer that has popped up.
There is nothing we can do about this- the continuous exposure of our cancer cells to aromatase inhibitors, tamoxifen or any other estrogen-supressing therapy just selects for mutations to arise in the cancer so it can grow around it, and that's why the cancer becomes more mutant and more dangerous as it acquires more mutations through multiple progressions.
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Cure-ious- Thank you for the information!
It appears difficult to stay ahead nomatter what kind of mutants we happen to be. I see now why there is no TV show called "Are you Smarter than a Cancer Cell?"
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