Bone Mets Thread
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For miaomix and anyone else having trouble getting insurance coverage of 5% prescription strength lidocaine patches, look for the over the counter 4% versions at your local drugstore. They may be worth a try, just be sure to read the warnings about only using up to 12 hours at a time. Then you need a 12 hour break.
As a retired pharmacist, I was always frustrated in getting Rx denials for the brand name Lidoderm product especially as the opiate crisis was beginning. Why take increasing doses of a systemic narcotic med if topical application on the painful area(s) can help do the job?
Even though they are now available generically, the price is still somewhat high but I was happy to use them following my 5 level lumbar fusion a few months ago...
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thank you for the information about the over the counter lodaicaine patches patvinrph, useful information to have. I received the patches only couple days ago, weeks after I reported my breakout pain to my palliative care specialist, so I have stored them to be used next time they are necessary.
The good news is that I have managed to not only recover from the pain and limping naturally on my own, using common sense, BUT because of my success, I have more energy and optimism than before.
The worst aspect about cancer for me is the sudden dependency on doctors, tests, and medications. Depending on the kindness of strangers is not my forte. I’m the quintessential Emersonian Self- Reliant, so I find it absolutely self-empowering any time I manage to resolve problems on my own.
Of course, with this disease nothing is certain, the landscape changes constantly which creates the type of terrain, inflammatory responses and stress that I believe cancer feeds on.
May we all experience days of self empowerment that we had to relinquish with our diagnosis.
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Thank you Jaylea. Delvzy...I just got home from the onco appointment. I told her about my chin being numb and she looked at me like I had 3 heads. She is, however, sending me for an MRI this Thursday morning, so, now the waiting game.
She also did bloodwork this morning and checked for 2 different sets of tumor markers. The lady that draws my blood is the sweetest and I asked her how long ago they’d been checked. It was so long ago, she couldn’t find it! She went back 3-4 years!
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Wishing you all a good result in the numb chin. They chalked mine up to neuropathy. I hope yours is all as easy!!!!
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Thank you all and wishing everyone here the best.
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Can I be a Debbie Downer? My spinal mets couldn't be seen on a PET/CT. I had been in increasing pain for over a year, and had three scans, which didn't pick up on some pretty sincere bone lesions in my thoracic vertebrae.
It took an MRI to see what was really going on. MO believes that for some patients, MRIs are superior in visualizing bone lesions.
So, if you are still in pain, and the PET/CT scan says there is nothing going on, talk to your MO about an MRI. It might be nothing, but more information is always better than less.
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Blainejennifer-
That is what I am hoping in my case. We are going to do an MRI of the cervical and thoracic spine. SOMETHING is wrong, whether the arthritis or the cancer. The pain is unrelenting and different from pains I have had in the past. Now 1 week with 'sleeping' sitting up-dozing really. Getting tired and frustrated. Waiting on insurance approval to schedule the MRI.
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Candy,
I can't believe they are making you wait that long. I've been in that pain, and it is life changing. At one point, I called my MO and asked how many pain meds I could take without dying. That's when they got the notion that I was for reals about the pain. And, even at full pain dosing, I have to say, it only got down to a 6 when I was moving, and 3 when I was completely still.
I get it about sleeping. I still prefer the lazy boy. Are you using a good, strong heating pad? That, alternating with an ice pack, can bring enough relief to get a good sleep cycle in. I write this with a Sunbeam at my back. I tried some other, fancier pads, but the cheap auto shut off Sunbeam pushes out the most heat.
Christmas wishes that they get their approving done quickly. I am still incensed for you that it takes that long.
Jennifer
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Thank you everyone! I too hope everyone on here gets relief from their pain and finds out exactly what is going on with those that are facing more tests.
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Just an update-
I heard from my MO office. Approved for MRI now. Didn't have to wait 2 weeks like previously told. I go tomorrow ( Friday ) for the MRI of the cervical and thoracic spine. 2 hour test !!! I plan on taking a tramadol pain pill before hand. Cannot take anything stronger since I have to drive myself home. With the weekend and Holiday, I don't plan on results till end of next week. I will keep you all posted. I hope everything is ok, but I also hope we can figure out why I have been in so much pain.
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Hello all,
Jaylea, thanks for the welcome. It's always scary trying to jump into an established group and I'm thankful for all who share.
I have a silly question, but I am a newbie so bare with me! Does anyone else get shaky legs after standing for too long? I've put a chair in my shower because I just feel like they might give out on me. I have mets to my femurs as well as other areas so was just curious if this was my bones or something else?
Hope you all are having a good day.
Cheers,
Sherry
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Has anyone on here experienced a bone fracture due to mets? Can you explain what it felt like, like what kind of pain it was and where it was located? I've been having a lot of pain and discomfort in my left shoulder and sometimes in my ribs. I have stage 4 inflammatory breast cancer and it has spread to some of my bones. I've had chemotherapy, a double, mastectomy, radiation, and more chemo.
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Sherry35, with mets to your femurs that sounds pretty common. I have mets in my spine, if I walk too much I get terrible muscle spasms and can't stand up straight.
NBee, I've not deal with any fractures thankfully so I can't help there, sorry.
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Candy...I’m happy to hear that your test was approved!!
I received blood results. Nurse hands me results and says all is normal. I get home and there’s like 5 results that are abnormal. What thaaa????!!!!
Also got a call this morning on my mri report on my brain/head. She says things are stable from last mri but I have a “coursing vascular structure” in my ear canal and that it would not be causing the numb chin. She’s sending me to ENT. She didn’t act like my numb chin was a problem or that it needs to be investigated further. So I STILL have no answers! Ughhhhhhh!!!!!!
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NBee, my recent scans showed a pathologic fracture in my T11 vertebrae. My follow up with MO is next week, and we will talk about options. But oncology nurse kind of prepped me, saying if I wasn't experiencing extreme pain I'm probably in a wait and see mode. I get occasional aches and twinges in the area, but nothing severe. Not sure what treatment you're on, but I can say when I first started Ibrance I had pretty intense pain in both met and non-met areas. Early scans showed improvement, so I believe the pain was from the treatment working on the cancer.
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sherry35 - my legs get shaky too when I stand for too long. My guess is this is fairly common with bone Mets
I got my biomarkers info back today from my bone biopsy and I am now triple negative. No wonder that Tamoxifen I have been taking for three years didn’t work. I am in shock that I am nowctriple negative. I started palliative radiation on my hip and sacrum this week and so think the pain might finally be getting better.
I need to start a new chemo protocol in a few weeks after I finish radiation. Not sure exactly what. Also waiting on Next generation sequencing to see if I am eligible for any clinical trials. I may be eligible for one with a parp inhibitor.
Still so overwhelmed and upset that I am now stage 4 and triple neg
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I’m wondering if anyone here who has brain mets had their onco call it a coursing vascular tumor? Any info is much appreciated!
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Hi Everyone!
Frequenter lurker, never poster here. Diagnosed this past summer with ILC de novo. My bone mets are extensive and all sclerotic, "salt and pepper" in size. I have never experienced any associated pain or other symptoms.
I am in need of some thoughts of my recent imaging. Two bone scans have not picked up the bone lesions, probably because they are too small. Recent CT scan basically the same from the initial CT showing the numerous mets. MO finally ordered a PET which showed no uptake.
What does this indicate? That I'm NEAD already? That my cancer is indolent, but still active? That the cells justdidn't utilize the solution injected for the PET?
I'm meeting with MO 1/2/19 and need a list of intelligent questions to ask. I know you smart ladies have a wealth of knowledge and can guide me in the right direction.
Leigh
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MelB, I guess that the tamoxifen you have been taking for 3 years WAS working just fine, its just that when we take a drug it applies what is called a "selective pressure" on the cancer cells, that is it makes an environment that stops them from growing- cancer cells like any cells are capable of mutating and they constantly do that, most of the time the mutations have no effect or kill the cell, but once it makes a mutation that allows it to grow in the presence of the drug, then those mutant cells eventually take over as they are the only ones that can grow in the presence of the tamoxifen. Scary as it is, it is critical that you got the sequencing that the cells are now triple negative, because otherwise you would have transitioned to some other drug for ER-positive cancer which definitely would NOT have worked. And the other thing is that the cancer may now have a shot at being sensitive to immunotherapy. Analysis of recent trials indicate that the cancer HAS to express PDL1 in order to be sensitive to immunotherapy, so you would want to know about that:
https://www.breastcancer.org/research-news/tecentr...
But keep in mind that CDK4.6 inhibitors have been shown to increase PDL1 expression, so a trial with Ibrance and immunotherapy and Abraxane might be very attractive.
There are early trials using CAR-T on triple negative, good to keep an eye on those.
https://www.cancertherapyadvisor.com/sabcs-2018/ca...
And lastly here is a link to a blog of Barbara Bigelow, who was ER-positive and the cancer mutated to triple negative, she went almost a year before they realized that it had mutated and the drugs she had been taking were doing nothing (arrgh!) and then she got a port installed that became mildly infected at the same time she got immunotherapy and chemo and the infection plus immuno caused her immune system to go into hyperdrive and she was in the ER for a long time with sepsis and nearly died. BUT, she did not die, and in fact the high fevers she had and intense immune storm appears to have eliminated her cancer entirely, and she has taken no drugs for 2-plus years now. She mentions that her doctors say the best responses they have seen to immunotherapy involved patients who, like you, were ER-positive and then mutated to triple negative.
So, yeah, a lot to consider. Here is a link to her blog: https://barbigwire.com/
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TNMNTGAL, I have brain mets but haven’t heard that exact term yet. I would ask if the tumor it refers to is in the tissue or fluid. If it appears to be in the fluid, a lumbar puncture would confirm (had that too, not as scary as it sounds). Also, there’s a Brain Mets Sisters thread, if you have morequestions.
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Hi Leigh,
Like you, bone scans don’t pick up much but CT shows extensive mets. My RO recently commented that my bone scan could be hers but then she looks at my CT and goes whoa, is this the same patient?
I believe the issue is that slower growing cancers don’t pick up the radioactive marker in the same way. I have not had a PET but suspect I would have low uptake despite the fact that my cancer is far from being in recession. The fact that you have ILC and sclerotic mets would imply, to me, that you also have a slower moving beast.
Hope this helps and that others will chime in if I have any of this wrong.
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Leigh....My bone mets showed up on a nuclear bone scan.
Hope
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Sadiesservant...thank you for your reply. While your explanation is what I suspected, I welcome any possible explanations. My MO told me that my disease would be difficult to follow...and now I know that is true.
Nonahope...I read all of your previous posts. Thank you for taking the time to respond. I will continue to follow your journey.
I welcome any other advice
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Leigh,
What was the actual SUV rating on the lesions from the PET? What treatment have you been on for the bone mets?
It is not beyond possible that treatment has caused a remission. You are Stage 4 de novo, and I have seen your cohort respond quite positively to therapy as you are "naive", meaning that your cancer hasn't been exposed to any interventions before, and so hasn't gotten a chance to be sneaky.
While you are grade 2, and therefore more indolent than 3, I have still seen grade 2s have SUV uptake within the parameters of a regular PET/CT scan. Now, there could be an issue with the salt and pepper nature of your lesions - they are teeny, and might evade the slices of the scan. Talk to your MO about the lesion size vs. the PET/CT scan's mechanical ability to detect said size. TBH, I still think you are experiencing the luck of de novo. I just re-read that, and luck is the wrong word, but I can't think of a better one right now.
The only caveat I can think of is that I have recently learned that for some bone metsters, both PET/CT and bone scans are wildly imperfect for assessing bone lesions. According to my MO, I am one of them. My lesions show up for an MRI.
I spent a year in increasing pain because of spinal mets that evaded three scans. Only when MO looked at an old MRI, and saw the beginnings of some spinal lesions, did he send me off for a new MRI. Apparently, he was so moved by the findings, that he sought out the RO in person, and had me on the radiation table that afternoon. I am getting all better now.
Best of luck in the New Year,
Jennifer
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my Numb Chin is getting worse I am booked in for my first MRI 4:1/19 and absolutely terr
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Illimae...thank you for responding. They said it’s in the tissue. Would that make a difference? Thank you for your help as I am a little worried. I could lose my hearing completely. I have already lost some in that ear.
Merry Christmas to you all!
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delvzy what about calling and asking to be on the waiting list in case anyone cancels? You may be able to get in sooner? And schedule some acupuncture in the meantime to help with anxiety? Would that be helpful for ylh
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Merry Christmas everyone!!
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Jennifer, thank you for the recommendation asking about the mechanical ability of the PET scanner to see small lesions. That's a good idea.
I started I/L in August. The PET report states that there was no abnormal FDG uptake seen anywhere other than the posterior aspect of my tissue expander with a 2.14 SUV rating. No other SUV values were mentioned.
I am sorry that you experienced such pain before your MO ordered a MRI. It's good to hear that you're feeling better. Thank you for sharing your story so others can learn from it if they find themselves in the same predictament.
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Well...I called our area “ask a nurse” line. She told me to go to the ER. I am now in the ER with all my symptoms. Just had a consult with neuro at Vanderbilt. She’s ordering a lumbar puncture. They’ll be doing that in just a little bit. I’m a little scared, as I have never had one before. She said she’s a little worried the cancer might have come back and is damaging my facial nerves. I guess we will see. Prayers please.
Can anyone tell me about your experience with a lumbar puncture please?
Thank you in advance
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