Bone Mets Thread
Comments
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Bev-
So, you did not have a hip replacement, correct? I'm still confused!
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Lynn,
I did have a complete hip replacement on the R side. In my L side, the doc said the same situation was developing and so he put in a rod and pins to stabilize the area.
In talking with my husband last evening, he said that the doc who did the surgery told him that my R hip was a mess -- he used the words acute, severe arthritis with a little bit of cancer mixed in. With all of the scans we go through, I do wonder how this was not mentioned to me straight on. I have been told that I have a lot of degenerative disease, but that's it. Never a referral to an oncology orthopedist or anything like that.
And, in fact, the week before all of this, I actually saw a rheumatologist who looked at my April 10 CT scan and told me that I didn't have a lot of arthritis. Huh?
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BevJen,
You are one tough lady, that’s for sure. I had the femur stabilization surgery on my right leg two weeks ago, and I’m still trying to walk normally—NOT! I am just now graduating away from using a walker to using a cane, but I simply cannot fathom how you were able to have both surgeries and still talk about it. Are you in pain? Initially, the pain I had was the worst I have ever felt. I had severe nausea from the pain! I hope you are being taken care of and medicated so you are not in a lot of pain.
I am very lucky to be able to have physical therapy at home. Slow but steady progress. Am looking forward to the day I can walk again on my own.
Prayers for your recovery as well, BevJen.
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BooBoo,
I did not realize that you had the stabilization surgery recently. That side isn't bothering me at all. The full hip replacement, on the other hand, is still pretty stiff and painful.
I sometimes think that I should have gone the at home route for PT. At this acute care facility, I have three hours a day of PT, and it is exhausting. When I finish, I fall onto the bed and just pass out. I am using a walker, but not walking that far yet -- I think on Friday I was able to walk about 120 steps, but not all in one fell swoop -- I had to take breaks in between.
This place (Adventist HealthCare Rehabilitation Hospital) has a doc who is their director and he is wonderful. He also tries to manage the pain so I am on painkillers 24/7 at some level. When I go to PT, he allows a little wiggle room for when the meds are actually given to that we can target to what's going on.
I'm curious if your doc said that it was only the cancer and that's why they did your work on the femur. Today, my DH informed me that the doc told him that I had severe, acute arthritis with a little bit of cancer mixed in, and that in combination, they had eaten away my femur. Doesn't that sound lovely? What I want to know is why no one alerted me about the arthritis.
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Very good question Bev, why the excellent (!) care team never alert us about other conditions? Here is my findings, in a scan the radiologist mentioned bone islands, in next scan the radiologist did not mention bone islands and mentioned cysts and other things which I don’t remember now. I asked my MO about them she said it’s not cancer related/ those are benign, that’s all I got. The problem is that My MO doesn’t look at the images just reads the reports, and the radiologist will not repeat benign tumors in each report so simply those disease will be cut out from the eyes. My neuro oncologist frankly told me she doesn’t care about other disease. Plus care team do not stay connected until something serious happened.
Bev and Booboo, wishing both speedy recovery (((hugs))).
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Good grief Snowdrop. You would think that a scan would give a complete analysis - whether it’s cancer related or not. And that the oncologist would mention something like “this isn’t my area of expertise but I suggest that you see Dr X.” We are a complete human body, may still live many years and shouldn’t be treated with such a laser focus on cancer. Sigh.
It’s been 14 months since my femur rod was put in and my left leg is still weaker then my right. I had home PT. I don’t know if I could have put up with 3 hours of PT like BevJen is going through but I needed a bit more then I got. The problem I had was I started Ibrance right after surgery/femurradiation. The Ibrance dose was way too much for my body therefore I could hardly do the PT. I was dizzy, short of breath, greatly fatigued and the Ibrance basically halted further healing. My healing didn’t resume until they dropped me to 75 mg. I recently thought I just had to live with the remaining surgical sight pain, but at my one year check up my orthopedic oncologist gave me some targeted exercises and they worked very well. He said he could prescribe additional PT but I chose to do the exercises on my own. It was amazing how much pain a weak muscle in two areas was causing me. The moral of the story...move it or lose it.
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Not sure about the US system but here in Canada I find there are still a lot of silos. Cancer folks only discuss cancer. If it’s something else... talk to your GP. It gets a bit frustrating as even pain meds aren’t handled by my cancer care team although the pain, oddly enough, is cancer related.
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HI Ladies
Well I am hopefully starting radiation on my sacrum this week. I have a LOT of pain now... I went from being fine to in pain every day in a matter of 2 weeks...it just stinks.
Anyway I am praying for NO SIDE EFFECTS!!! (a lot of you know what I went though with my Y90 soo...yea)....
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NicoleRod - I’ll be praying that you find relief, nothing but relief. No side effects. Please let us know how it goes for you.
How many treatments are you going to get? Do you know the total grey? If you get PET scans, what was your sacrumSUV on your last scan?0 -
Oh no Nicole, sorry you're in pain . I hope the rads provide relief asap!
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Nicole, the bone pain can be unbearable. I hope the radiation helps you with pain relief. Initially you may have some inflammation but it should eventually subside . I had radiation to my spine mets (Cervical and lumbar spine areas) some time ago and it really helped with pain relief.
Right now I am on pain medications since I cannot take a break with my systemic therapy (Trodelvy).
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Thanks Moth and S3K5
RK2020 Those are great questions... I know tomorrow is like the set up and something else (I already have the tape and marker marks) Then I believe its every day for 10 days so 10 sessions. What did you mean "what is the total grey"? Should I ask the technician that tomorrow?
Strange thing...my PET from 04/19/21 doesn't mention the sacrum??? Here is what the PET says..(don't pay attention to the liver stuff its wrong they didn't know how to read it after my Y90)
Hx.Restage breast cancer. Stage IV (liver, bone) Continued tx, ?progression liver MRI. Initial diagnosis Rbreast DCIS 2014 s/p PM/XRT. Local recur 3 2019 s/p b/l SM T2 NO ER+ HER2 neg.Relapse bone(sacrum),liver (2 lesions) 4 2019. initiated tx, progressed. Ablation 2 liver lesions Rlobe 10 2019. Interval BSO 11 2019 benign DOSE: 16.5 mCi (F-18 FDG). SERUM GLUCOSE: 92 mg/dL. PROCEDURE: patient >6hrs. 60 min following IV F-18 FDG, (PET) images obtained skull base-mid thighs. CT obtained for anatomical correlation and attenuation correction. Dilute barium provided. Image recon Correlation: petct 2/18/20, os prior reports,; mri adb 4/13/20 older reports; inova CT chest 12/17/19, bone scan 12/4/19. FINDINGS: MBP SUV 1.3 liver SUV 2.1 HEAD/NECK. No suspicious hypermetabolic foci.area stable abnormal signal MRI Rfrontal lobe not included on the exam. THORAX: No suspicious hypermetabolic foci. Stable 5 mm groundglass nodule LUL image 71 compared to initial PET/CT 08/06/19. No new pulmonary nodule, adenopathy or effusion. Posttx changes anterior RUL and chest wall. ABDOMEN/PELVIS: Increasing size and metabolic activity two separate lesions segment 6 Rlobe liver: Anterior image 137 measures 1.8 x 1.1 cm SUV 3.9, prior 1 x 1 cm SUV2.4; inferior image 143 measures 3.1 x 2.3 cm SUV4.7, prior 2.3x1.4cm SUV 2.4
But MRI says this 04/29/21
T2 hyperintense, heterogeneously enhancing bone lesion in the left
paracentral sacrum, as described above, consistent with an osseous
metastasis. This has increased in size since the prior MRI exam but is
roughly unchanged as compared to the recent CT exam.0 -
Well Nicole, your PET report made my head spin. Clearly you have something going on in your sacrum so hopefully the radiation will put it to sleep. Buhbye. Goodnight. 😴
I may have sacrum radiation in my future. I’ll see how things look on my July PET and make a decision from there - unless of course, pain significantly ramps up. It sounds like that is exactly what happened to you in just two short weeks.
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RK...yup that is exactly what hsppened to me. I went from totally tolerable pain here and there to full blown pain all day and night. It affects my glute, my hip my thigh and even now sometimes my calf and even now the other side of my back.
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This sounds interesting, if apparently still a ways off from general use:
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I am wondering about this, I am on my third cycle of Ribociclib and Lerrozole what seems to be happening is that about a week after the start of the new cycle I have no pain in my hip for a few days but then the pain returns, the same thing is happening on each cycle. I am not due a scan until June. I am a bit concerned that the treatment might not be working I have two other bone Mets but they don't cause any pain.
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Any one heard of this for bone mets treatment
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Nicole - MRgFUS sounds very interesting. I'd love to hear from someone who had this treatment. The next time my Moffitt MO suggests radiation, I'm going to discuss this with her.
I did a very quick Google search and found one journal article that said: MRgFUS results in excellent rates of durable pain relief, improvement in QOL, and subject-assessed wellbeing and function for patients with metastatic bone pain who are not candidates for RT.Hmmmm. I wonder why RT is preferred. My naive brain would think that MRgFUS would be preferable to the collateral damage that radiation can cause to surrounding organs. Hello esophogitis! They must have a reason. I need to research more.
Trial results from 2014: https://pubmed.ncbi.nlm.nih.gov/24760791/
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RK did you get esphogiitis? If so from radiating which mets? I need C7 and T3...but will effect that area....
RK also I am only finding 1 doctor in and he is in FL that does this for bone mets...
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I got esophagitis when they radiated T12-L2. It wasn’t fun but the worst of it was over in about 2 weeks. I had 5 treatments and if I remember correctly, it didn’t start to bother me until after treatment 5. Good luck.
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Ok so forget the link I posted **unless you are rich** the reason there are not any doctors doing this is because insurance doesn't cover it...its $32,000!!!!
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hi everyone!
my mom had spinal mets which was thankfully gone after undergoing radiation therapy. She was suffering from so much pain when moved before rads until 2 weeks after rads, but since yesterday she felt no pain at all. She's taking morphine, pregabalin and paracetamol for her pain. Though it really concerns me because she's veeeeeery drowsy but she is conscious and oriented to time, place, and person. She just wants to sleep all day and won't budge. Anyone experiencing this also? And her mouth is very dry
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if she is not experiencing pain it may be time to taper the morphine? It can cause drowsiness. Also has she spoken with a counsellor or psychiatrist? Depression is very common after stage 4 dx and it can be physically debilitating. What does her medical team say?
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ALovingDaug - glad your mom's pain is gone. i became very sleepy from morphine and couldnt keep my eyes opened. i would fall asleep sitting up on the couch. as long as her pain is better now she should try to get off some of the pain meds.(one at a time). her doctor should tell her how to taper, but i'm sure as she slowly gets off the morphine her sedation will be lessened. Pregabalin can also make her sleepy, it is a side effect of it, but i dont get sleepy from that at all. for me it was the morphine.
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Nicole, I had Cyberknife treatment to C7 and the pain went away - it was only 3 target sessions. Yes, it is very expensive but luckily my insurance covered it. It involved a onco-neurologist and the radiation oncologist for mapping and actual radiation sessions. He was the best Onco-neurologist but he retired last year.
I haven't checked at Memorial Sloan Cancer Center if they do CyberKnife to the spine (I am sure they probably do in the NYC main branch). There are a number of hospitals in NYC where cyberknife to spine is available.
Is it an option for you to go to NYC? Will your insurance cover out of state procedure?
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One general question to the experts on this team: what does 'atrophy of spinal cord' mean? I have extensive spine mets from Cervical spine to Sacrum.
MRI report from yesterday says :
"Spinal cord demonstrates incremental atrophy of the distal thoracic segments."
I am trying to reach the Neurologist about this but till then, if someone knows what this means, please let me know. Thanks in advance.
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Hi S3K5,
Here's a definition: Spinal cord atrophy represents an irreversible state of degeneration manifested both radiographically and pathologically by a loss of spinal cord substance.
I'm not sure if this is common with aging or if we experience some of this degeneration as a result of extensive bone mets. I'm glad you're reaching out to your neurologist for more of an explanation and understanding of what this means.
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Sadiesservant yes I found that definition and it seems to be common amongst MS patients. I was just wondering if it is common amongst bone mets patients too. So far, I have no symptoms due to this spinal cord atrophy and I hope it remains that way!
I'll post an update after I see the neurologist.
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S3K5... so the "atrophy" they noted is not where you had the radiation right? You had it in the cervical at C7?
Also..I did speak briefly to my RO about the C7 and T3..(right now we are focusing on the sacrum) but I believe he would want to do regular radiation to the C7 and T3.... I don't know how I feel about that....
RK ...it does look like that focused ultrasound is also done in San Francisco at UCSF..... I am going to contact them to see if they take insurance..it is FDA approved.
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Thank you so much!
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