Bone Mets Thread
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For anyone who may be mTNBC (triple negative), an exciting press release came out on Monday:
I had my after-scan meeting with my MO yesterday and discussed this with her. This treatment is associated with the CCCR5 antagonist (per a Google search, CCR5 is a gene and a chemokine receptor, something related to protein??). I checked my Foundation One report, and as of my test 11 months ago, CCR5 was not among the genes listed as being included in the testing.
My MO told me that like the new Ventana test developed to identify PD-L1-positive patients, if Leronlimab is approved, they will develop a special test for the presence of CCR5.
Do read the press release. It seems very exciting, if preliminary. I'll post this in the Triple Negative and Ibrance strings, too.
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hello my friends!
i May need some advice.
Did a yoga class yesterday started to feel pain in my low back (area in question awaiting Petscan) and I took Tylenol and it didn’t touch the pain.
Slept okay but woke up many times in pain...not sharp but like a persistent dull ache.
Scale of 1-10 it’s like a 7.5z I have a pretty high pain tolerance. Took more Tylenol this morning and it’s not doing a lot.
I am trying to approach with thoughtfulness that it could be from the yoga, we did a lot of “core work” but I am pretty strong in my core and found it easy-ish at the time
thoughts or suggestions?
TIA!!!!!
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Can you take NSAIDS? Dull throbbing could be more like muscle pull and you want to calm down any inflammation. Is ice on the area helping at all?
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thank you SondraF!! I will try my naproxen that I have an Rx for. I haven’t iced it yet - but I’m thinking about it...
I also had some diarrhea this a.m. and a low fever. Just off over here!!
But I’m hungry so eating a bagel with cucumbers and avocado 🥑 yum!!!
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Lynn, that press release is confusing, they alternate between saying it is for Her2+ or TNBC..
Anyway, it reminds me that there is a potentially related drug that is further along in trial that could be reporting soon.
Your press release talks about inhibiting CCR5, a chemokine receptor protein that is expressed on the surface of some immune cells. CCR5 has a close relative called CXCR4. (Both molecules, incidentally, are used as co-receptors (with CD4) to allow HIV to get into T cells as the first step of HIV infection...)
There is an inhibitor of CXCR4 (called Balixafortide) that is already in phase 3 trials in combination with Halaven (eribulin), and in this press-release it indicates (see last sentence) something about how if they get really good results they are eligible to move forward quickly- I don't know how FDA approvals are structured, so someone may know what this refers to.
It's being tested for patients who already had at least one chemo treatement in metastatic setting...
https://www.biospace.com/article/polyphor-announce...
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Cure-ious, I had to read that first article (the one I attached) twice, as I was confused. It appears that they are referring to two different BC patients, one triple negative and the other HER2 positive; the latter was an "emergency" use patient.
Thanks for the information on Balixafortide. All of this is beginning to make me somewhat more optimistic. My MO yesterday, also said that developments on breast cancer are "ballooning" and are finally very encouraging in general.
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Maire67 , I just saw all the posts and noticed that you are in NJ too. Where in NJ are you located? I live in Central Jersey and go to Memorial Sloan for my treatments. With my bone and liver mets, I had to have an experienced MO.
Hope you like you new MO.
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S3K5 and Marie67...I am also in Central Jersey.
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I’m in Northern NJ. My gyn recommended my mo who has been terrific for 14 years. I had a second opinion by the head of oncology of a large hospital. Also had access to an opinion from MSK. All concurred with her.
I was triple positive & ILC . Lucky to get Herceptin in 2006. It was a game changer. Just had my first Kadcyla and it was ok. Minimal side effects. More rads ahead. Good luck Jersey Girls.0 -
Ditto...best wishes Jersey Girls!
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Maire, when were you diagnosed triple negative? My own diagnosis, since 1991, had been ER+. My MBC is to bone only, so far (discovered by accident in 2/17). Then, last Feb (2019), I had a small lesion in my hairline which turned out to be a skin met! It was a very small amount of tissue, and they biopsied it as triple negative. We tried to retest but not enough tissue. My MO just told me that she is questioning whether that was an accurate assessment and whether I might yet be ER+. Thank goodness such strides are being made recently. It's a little dizzying how quickly things are happening. Let's just pray that a lot of them are applicable to us, whatever our receptor status!
And you go, Jersey Girls!
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JoynerL , aren't skin mets from BC a rare event? I hope they got all the lesion out during biopsy. Is there a local treatment given for this?
My bone mets are relentless - not responding to any chemo, AIs or anything. Now my MO is focusing on minimizing liver mets which have started showing some resistance too.
Anyone here had regression in bone mets with any new treatments? I have completed 11 different chemo therapies + all the different treatment to target ER/PR+ receptors. I trust my MO to come up with something that would work. I see her early next week.
Jersey girls, all the best! We are all in good hands with our medical teams!
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I had my treatment and a flu shot Wednesday, been a little achy since, hopefully I can get some rest tomorrow as we are supposed to have a rainy/cold day.
My CT scans all say "stable", I always wish for better, but the doctor says "stable" is great and pretty much said that's all we can hope for as they are never going away completely
My sister in law is NED, she had mets to her lungs and they are undetectable now, so that's great news. If she can be NED, so can I.
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I was diagnosed with mets to my collarbone back in September 2019. I assumed that there would be some kind of surgery since back in 2010 when I was first diagnosed with breast cancer (IIB) there was surgery to remove the cancer. My MO told me that there would not be surgery for my cancer in the collarbone but I would be doing chemo and radiation. I completed 12 weeks of Taxol two weeks ago and will have my first PET scan next week. Hopefully, they will not find any other cancer that the other scans missed. Anyway, I noticed from reading some of the information on these threads for Stage IV that some of you had surgery with a bone mets. When is surgery done with bone mets...is it if is broken, done to remove a sole place that is cancerous or for some other reason?
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cowgal, yes, my understanding is that surgery is only done with bone mets to repair damage. Radiation might be done for pain or for a single bone met.
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Hi Joyner.
Interesting comment on the skin met. I somehow suspect that skin mets might be more common than we realize. Shortly after I was diagnosed stage IV I had a lesion on my chest wall above my left breast (not the one originally involved). At first I thought it was my bra rubbing but it simply would not heal even with bandaids and polysporin. Well, low and behold, when I started Ibrance it magically healed. I still have a scar. My MO thought it might be a skin met at the time but it was not biopsied (not as common to biopsy here) and now I doubt if there is anything to test.
More recently I had an area of red splotchy spots under my right breast kept getting more pronounced. Well, began taking Verzenio and... the splotches have disappeared - this after months of me watching them.
The other thing I sometimes wonder about is how common it is for folks to have elements of ILC. I was diagnosed IDC initially but there are some quirks that make me wonder if there isn't an ILC component. My cancer has been a bit sneakier and hard to pin down in terms of progression. When I progressed in 2017 it appeared to involve the liver capsule which is a bit odd for IDC. Plus, all of my bone mets are sclerotic. (I was quite interested in the earlier discussion on scans as, in my case, bone scans are completely useless. They look like they could be anyone's scan but CT... whoa... bone mets all over the place!)
Anyone have a mixed bag?
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Hi Joyner. I was diagnosed triple posiitive in 2005. Lumpectomy, then mastectomy. ACT and Herceptin plus Aromasin . Bone mets in May 2017. Tried Ibrance & faslodex.for 3+ months but I still had Her+ after bone biopsy in late 2017. Progression in 2019 letrozole, Herceptin Perjeta then Taxotere. Now Kadcyla & letrozole . I had radiation to my left pelvis and femur in August. More progression after Dec PEt and MRIs. Will start rads next week for right pelvis and sacrum.
Spots all thrust spine..some are sclerotic now.
I did have 2 spots on my chest found by dermatologist. Both came back atypical cells the year before progression. Now I’m losing weight quickly. PM me if this is too confusing. Take care.0 -
Sadie and S3K5, on the skin met, I had just progressed on Ibrance/Faslodex in December 2018 (after 22 good months). The MOs were figuring out a next plan and put me on Xeloda in late Jan, as I recall. The skin met appeared as an odd lesion in early Feb, and my brilliant young dermatologist was all over it. It was she who said "that needs to be biopsied". She quickly determined that it was BC, and equally quickly, the Xeloda zapped it. No further recurrences to date. I see my dermatologist for my every 3 mo check up in a week or so, but I don't see anything odd. Interestingly, my MO, who is head of a large cancer institute in Richmond, said that the skin met was in a sense a good thing, as it was a visible way to see if a treatment was working. He has always said that bone mets are the very hardest to evaluate as there's no mass to measure for growth and shrinkage.
My dermatologist made another interesting observation: she said that Xeloda is one of a class of drugs which sort of "drives" skin cancers to the surface quickly, in that it causes them to appear earlier than they might have and then zaps them away, i.e. basal cell carcinomas.
,Maire, I totally misread your earlier post as triple negative rather than triple positive. Thanks for that explanation.
Cowgal, I'm assuming that your collarbone issue was multiple rather than a single, met? I see the "s" after "met".
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Joyner - My mistake. When they diagnosed me, it showed a lymph node that connected into my collarbone so it is just one mass.
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Good morning,I used to be very active on these boards and this thread. This one was particularly helpful to me when I was diagnosed de novo in 2015 at the age of 38. I realized it had been over a year since I last logged in. I used to check others logins to see if they were still living and if it had been a long time, I thought the worst. So I’m logging in just to say that sometimes it’s actually the best. Sometimes people are just out there living their best lives.
I’ve had three progressions since 2015, but still love my life most days. The kiddos that were only 8 and 10 when I was diagnosed are now 12 and 15 and are thriving. I’ve stood on the edge of the Grand Canyon, put my feet in the Mediterranean, snorkeled and zip lined in Mexico and climbed a monastery tower in Portugal. I saw Hamilton on Broadway. I’ve been there when my daughter started high school and my son started middle school. I’ve seen first field hockey goals and home runs. I’m living my best life.
It’s not always easy. I’ve had two treatment changes, GammaKnife, and radiation. I feel sick most of the time. I’ve effectively lost my career. I feel that the best modern medicine has to offer is still nowhere near good enough. I’ve lost 49 friends to this disease. I don’t dare to think more than six months ahead at a time.
But for someone wondering, “Is that Bluefrog poster” still around? Yes, a resoundingly loud, yes. And if you are newly diagnosed and reeling, know that it is possible that you too can one day get back to some kind of normal. That it is possible that one day you look back and marvel that you’ve lived with this disease and all it’s challenges for nearly 5 years and it hasn’t broken you.
May we all wring all the joy we can out of the days we have.
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Would that be considered oligometastatic? I'm asking out of ignorance. It seems to me from reading that a single area of metastasis is often treated differently and is considered more treatable??
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Bluefrog76 - Thank you so much for posting. Yes, I often think the worst when people stop posting. Congratulations on how well you have done. I was just diagnosed with stage 4 in September 2019 after being considered cancer free for 9 1/2 years. You are an inspiration.
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Joyner - I have asked my MO about the possibility of the oligmetastatic and he says he knows what it is but obviously, you can't test for that. I am hoping he is treating me as treatable but not sure what the difference in treatment plans is between oligmetastatic versus non oligmetastatic. My first PET scan is next week and I am obviously hopeful that nothing else shows up on there and that the chemo has shrunk my tumor.
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JoynerL , I am glad that the skin mets disappeared with Xeloda. Agree with your MO about bone mets being the hardest to treat.
I have tried 10 lines of different chemotherapy but the bone mets are continuing to progress. It started as an oligo met in my spine, got cyberknife radiation to that spot, was taking Ibrance and faslodex for almost 2 years but the bone mets started appearing in my thoracic and lumbar spine. Now I have bone mets in every vertebrae of the spine. I am seeing a neurologist every 3 months to ensure that the bone mets are no where near the nerves going to my arms and legs. I am really worried about ending up in a wheelchair, after reading on this forum about a few ladies in wheelchair due to bone mets complications. Thanks to all those wonderful ladies for sharing their experiences.
Hope this doesn't scare any one here, since each person's body reacts differently to the same treatment. I am just stating my experience about bone mets . I am hoping that the next treatment would help to regress my bone and liver mets.
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S3K5-
My bones mets are "extensive", in my bone marrow, and throughout my skeleton...everywhere. So far, and thank goodness, I have no pain anywhere, and the mets are limited to the bone. I was originally diagnosed in 1991, and by accident found bone metastases in Feb 2017, after 26 years in remission. I did Ibrance/Faslodex for 23 mo (I'm probably repeating myself) until it failed and have been on Xeloda since for 12 mo next month. Except for Hand and Foot Syndrome, I live very normally and go to the gym 5 days/week. 3 days full work out and 2 days stretching and treadmill. My MO attributes much of my ongoing health and vigor to my exercise routine. I hope that she is right. I know that some simply can't do that, but I'm grateful that I can.
So far, so good....and good luck to you and to all!!
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JoynerL- fantastic news on your long success with xeloda! I think you are right about the exercise helping and glad that you can still be so active. I am activealso.
About the skin met- after I had chemo in 2012- lots of “pre-cancerous “ lesions showed up on my scalp in line with where I Parted my hair - I was not a good hat wearer. They were easy to see because I was bald at the time. They told me that they came out prematurely due to the chemo. I get them frozen every so often-
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JoynerL I am happy that your bone mets are not aggressive and you have no pain. In my case the pain can be debilitating. I take a lot of pain meds to keep a normal life. My exercises are limited to walks or the stationary bike. No gym for me - don't have the stamina yet.
Once my MO stops my current chemo which is not working anyway, I may be able to get back to routine exercises. I was fine for 5 years with bone mets only but last year after my diagnosis of liver mets, it has been harsher chemo regimens.
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S3K5, WOW on 5 yrs with bone mets only! I can only pray for that long a time! Hoping you'll be back at the gym soon, my dear-
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S3K5, I would like to ask how your liver mets were found? My last 2 CT scans say there is a "lesion" on my liver and that my liver is "fatty". In the CT 3 months ago, it said the liver was 5mm, this past CT scan from last week says it's 6mm-7mm. The weird thing is my MO (who I love) didn't mention it at all and said my scans looked great, I only found out about the lesion because I always request a copy of my CT report and read thru it myself.
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BigPeaches,
Sorry for jumping in here. I had liver lesions first identified on a CT scan last May. The CT report read as follows:
There is fatty infiltration of the liver. There appears to be a subtle lesion in the inferior right lobe of the liver measuring in the 2.1 cm range. This is not appreciated on previous exams. MRI of the liver is suggested for further assessment to exclude metastasis.
Well, I had the MRI of the liver to evaluate the "subtle lesion" further. That report showed about 5-6 lesions, including the 2.1 cm lesion, but all of those others that did not show up on the CT scan. The word lesion, as I understand it, is radiologist speak for possible tumor.
It's not my business, but I would urge you to call your MO to see if you can have an MRI for further evaluation. I am also working now with an interventional radiologist, and he told me that the MRIs are much clearer for his purposes than CT testing. Good luck!
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