Bone Mets Thread
Comments
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Another person here annoyed at the glacial pace of page loading with this “update". More like a downgrade for sure. At first, I thought the site was slow due to heavy usage but the same problem exists now in the wee hours.
In editing my post prior to submitting, it went and lost the entire thing! Be wise - if your text is getting a bit long and you don't want to retype the whole message, highlight and copy at an intermediate point.
My ipad air is a little over a year old and just got the most recent operating system last week…
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Oh yeah, haha! Now my avatar photo is completely missing, I don't have an initial there or anything, even tho I've done zero adjustments to it since the switch over. Why, universe, why? Lol—just joking. But c'mon…….
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definitely too much white space. Contrast backgrounds would make reading more comfortable
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Divine, that's quite the avatar you have! Sheesh, glacial speed is right! To quote Dr. Seuss, "I do not like it, Sam I am!"
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What I can’t understand is why they are not reverting to the old site while they fix it. The glitches are amazing. Yesterday I tried to post something and it turfed me out (after an agonizing search for the log in) saying access denied and the post was gone. Poof! Interestingly, through the fight to try to get back in the donate page kept coming up. Not likely…
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wth!!! no likey the new updates
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They probably can't revert back, unfortunately. And even if they can, it would be far more disruptive and time-consuming to revert back than simply fix the problems with the new version. Which are hopefully coming along soon because it's driving me crazy!!
I did a similar thing recently at work where we moved our entire website from one host to another. So the entire back end was new but the front end that users saw was the same. But we immediately had severe problems with page loading speed and it took several days to dig through all the server settings to see which one needed to be changed. It wasn't something we could test ahead of time because it was impossible to replicate the same volume of traffic on the test site.
It sucks all around!0 -
I worked in IT and agree that volume testing can be difficult and sometimes impossible. But slowness is just one of my complaints.I sent the BCO admin a message yesterday with feedback on 4 different things. I received this canned response:
- Thank you very much for your feedback. We are gathering all messages received and sending them to the tech team for possible resolution. We appreciate your patience while we get our site working seamlessly!
So I guess we will just have to be patient.
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I get it and feel for the team given the level of frustration. My problem is that this isn't a simple glitch fix in my mind. The site needs a complete rethink to make it more accessible. Sigh...
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The one & only change I really wanted was threading conversations so replies would be nested under person's post. Instead we have essentially the same site but white with insanely slow load times & error pages. I'm sure BCO is ripping their hair out over this too - nobody wants a poor launch but oy vey, reality is, this is bad...
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Hey, anyone willing to talk about having sbrt. I am going for simulation next week and was told I could be in mri for 2 hours. Yikes. Plus, was told treatments themselves take a bit. Very scared. This is to treat a spot on the 9th and 8th ribs that are close to the spine. Help.
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All I can say is that if I could get SBRT, I'd sign up without hesitating. It's not standard of care here & I was a clinical trial to get it for a lung met but got randomized to traditional rads - ugh. SBRT is showing better outcomes in trials. I'd say ativan yourself if you need to & go for it!
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over the next week I plan to try different dosages of anti anxiety meds to see how much will almost knock me out but not quite. :-)
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Ive had SBRT a few times to the spine and only had CT planning, although the planning appointment itself took at least a half hour to get the angles, CT, tattoos, etc. If they are talking MRI its probably due to location and they need better imaging to ensure its all targeted effectively. Two hours though! wow!
The actual treatment is pretty easy and just involves laying still in one position after they poke and prod you into place. Make sure at simulation you are somewhat comfortable in the position they put you in (they can use bolsters and stuff under the knees if needed), and ask how long the actual treatment will be. Mine were all about 30-40 seconds of actual radiation, and the tumors it was hitting were pretty sizeable.
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I agree with you Moth, I was hoping that replies could be under each person's comment and this was not an improvement to what we had.
I know that's not on topic. SBRT isn't available here that I'm aware of. Gonegirl I do hope you can find a good dose that makes it tolerable for you. I hear good things about the therapy.
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This week I had my first scan since starting treatment and my one bone met is GONE! Now stay gone!!
Edit: I guess that confirms it was in fact cancer after all. Ha.
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Congratulations ParakeetsRule!
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Yay! Parakeetsrule, I’m so happy for your good news
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Hi All,
I’m new to this thread but I’ve been around BCO on other threads for a while. My first bone met is a doozy. It was compressing my spine at L1 and caused severe leg and hip pain all through the month of January. Clear bone scan in January, somehow. it eventually showed up on a baseline CT scan in early Feb when I was about to start a clinical trial and was followed immediately by an MRI, which led to being admitted to the hospital. A few days later I had surgery to excise the lesion (as much as possible) and stabilizing rods and pins were placed. Still ahead are radiation to “clean up” the remaining cancer and then getting back to a working systemic treatment for liver mets that progressed back in December. I hope it’s still possible to stop the liver Mets, I know nobody can say. Some of my upper leg pain has returned in the form of nerve pain. I have pins and needles pain and my skin feels very irritated with anything touching it. Last night I took a dose of gabapentin (that was discontinued after surgery) which helped. Called my ortho surgeon this a.m. and he agreed with the gabapentin and also will try to get the radiation started asap. Last thing, I no longer qualify for the trial because the spine lesion pathology showed ER+, and my arm of the trial is for triple negative. The liver mets flipped from ER + to Er- in a December biopsy. I’m feeling pretty scared. Has anyone had surgery and/or radiation for spine mets?
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Hello Rosie - I've had spinal radiation twice. Once to T11-L1 and later that same year to C1-C5. Unfortunately I've still got issues with new mets in C1, T11 and L4.
I was told that I might have diarrhea from the rads to T11-L1. I did not have diarrhea but I did suffer from esophogitis which was completely unexpected. If I recall correctly, that didn't happen until after I finished my 5 treatments. I had nerve pain radiating down my legs after the first couple of treatments. It was intense at night but only lasted 2 days.0 -
Thanks for your response, RK. Sorry there are new issues. It sounds like your radiation had some unpleasant effects but you managed to get through them? Not sure if that’s how it was for you. I sometimes think I’ve learned to live with discomfort. It’s been a rough few months
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Rosie - I failed to mention the most important point. I gave NO pain from my spine any longer!! OK, I have this weird electric sensation that travels to my belly when I tilt my head forward but that’s from my cervical spine mets. And that’s not painful. Just weird feeling. So I consider my radiation successful. The rad side effects were temporary. I understand how you begin to learn to live with discomfort but we deserve better. I hope you find relief.
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Hey rosie -
Don't fret about the spine rads, its really pretty easy and makes sense to finish the cleanup job in there. That L4 progression I had was so sneaky that the only real sign of it was some new neuropathy in my mid calf which went once rads started. Radiating your L1 (and then likely the L2 and T11 - my RO said they typically do one above and one below, but your docs may suggest something more highly targeted due to your new Terminator hardware) could help alleviate some of the neuropathy weirdness from your legs.
Both my L5/S1 and L3/L4 rads were five targeted sessions and I only had one day of Big D for the first one and just had to urinate a lot with the second one. They are pretty quick (at least compared to these breast rads!) sessions, and the radiation will continue to work on the area for 2-3 months post final zap. So you may get some instant relief, or it may take a few extra weeks, but over time the pain/neuropathy fades.
I hear you about wanting to get back to a working systemic therapy ASAP - Ive got my last breast rads today and start Lynparza next Monday. Other than January I have been off Ibrance since some point in late November (but still on letrozole). It may not have been doing much by that point but it still had to have been doing something! And of course this morning I woke up and L5 area is hurting, but its in the area of pre-cancer spine changes and I may have overdone it yesterday with activities. At least I hope so!
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Parakeetsrule congrats!!!!
I am currently recovering from Kyphoplasty on T11 (3/1) and going through Dex (steroid withdraw) Any pointers are greatly appreciated. I am battling radiating joint pain for the next few days from the waist down.
I also have a Radiation Onc consult apt on Wednesday to zap my T11 as well for cancer and pain that I have been having there. I have read maybe Diarrhea may be an issue but I will be starting Verzenio soon as well that also has that SE so I will be dosed up for that!
Oh Happy Monday!
Tigre
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Sondra, thanks for the reassurance. I think I have 5 sessions coming up. I’m doing a lot better with moving around and doing things like showering and dressing almost on my own after the surgery, but this new leg tingling and being back on gabapentin has me stressed again. That just happened on Saturday so it may not be in my previous post. I felt like my upper legs were on fire, took the gsbapentin hoping it would help and it did. Called surgeon Sun a.m and talked to him right after operator got my info & reason for calling. He agreed with the gabapentin, upped the dose one level and is trying to get my rads sooner now.
Good luck with the Lynparza. And hope the letrozole held down the fort while you had the lumpectomy & rads. My RO had me continue Ibrance during my breast rads and MO didn’t seem happy when I saw her halfway through. I figured RO knew what she was doing but I guess not. ( MO put me on a 6 week Ibrance break.)
El Tigre, I feel for you with the radiating joint pain. It sounds awful. Good luck with Verzenio and your T11 zapping
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Hi, everyone. I was recently diagnosed stage IV MBC with a lot of mets to bones and liver.
I have multiple mild compression fractures (T7, T10, L2) and a severe one on my L4. I have moderate to severe pain in my lower back, hips, thighs, and down my right leg. Currently on tramadol. I saw a spine surgeon a while back who said I didn’t need kyphoplasty and that the chemo or radiation will help with the pain. This doctor is good but has a reputation of being conservative when it comes to surgeries. Now my med onco is referring me to another spine sugeon who will most likely recommend a kyphoplasty.
My cancer is very aggressive (Ki-67 40%, Nottingham Grade 3) and I’m afraid of delaying chemo or hormone therapy for the kyphoplasty. For those who have undergone kyphoplasty, how long did you have to wait after the surgery before you can start treatment?0 -
Thank you rosie24
hungryfrittata, they said I could get rads right away on my T11 kyphoplasty but my consult just happened to be tomorrow (1 week out). My Doc for this procedure is also a conservative doc and went over the risks of complications of where the cancer was on my T11 and how it might hinder the procedure. Luckily it did not. He also mentioned that there may be a risk of another vertebrae being affected. Almost like a domino affect, fix one or make it more stable and the pressure may affect another (I would definitely ask your new spine doc) they can repeat the procedure if that were to happen. The success rate I believe is 1 and 3 years (85.2% and 59.9%, respectively).
I have a few vulnerable vertebras but they were not right next to each other so I think I escaped the "domino affect" (knock on wood).
After the pain and not being able to get up or out of bed w/o my hubby helping. I am very thankful for this procedure.
The recovery is no heavy lifting and the cement sets within 10 min and yes I remember nothing of the procedure, deep sedation with no grogginess. Outpatient @ OHSU as well, this might be because of covid because when we researched the recovery some medical sites mentioned 1 night in the hospital.
They say you can return to your normal activities with no heavy lifting and may soreness up to 2 weeks. My back feels a tad sore where they did the incisions and the lower back as well, most likely due to bone mets and shifting how I carry my weight on my back since the T11 fracture and surgery recoveries from Oct/Nov 2021 (colectomy/Oomp).
During this I was taking Kisqali and any regular medications I was prescribed. I would hope that chemo would not bee too delayed if at all. They do worry about inside healing and if you are on Dex (steriod) which I was for the severe back pain, but I hope if this procedure is beneficial to you that you can do it and without any hitch.
tigre
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el_tigre I wish you well with your T11 treatment. I had SBRT on my T11. I had a small 1.5 cm lesion. I had no pain before it was diagnosed but mild pain before the SBRT. The SBRT was an easy treatment with no immediate side effects. I have daily pain now that is worse at night. My latest scan showed no progression, so I’m assuming that my pain is from the radiation scarring or the callous caused by the lesion.
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Hi, el_tigre. Thank you for your reply! Ijust saw 2 different spine surgeons and they both agreed with the first doctor that kyphoplasty is not advisable for me right now. I have a lot of lesions in my spine and they said it's best to start systemic treatment asap — probably because of the domino effect you mentioned. I was given a brace to support my lumbar and thoracic, hopefully to avoid further fractures until the denosumab and chemo kicks in. The rad onco also suggested that, if I can tolerate the pain, to put off radiation to my spine to avoid my blood count from dropping so I can tolerate the chemo more.
An MRI of my head/brain did show 3 spots with skull mets (lytic lesions at the left greater wing of the sphenoid, left occipital condyle, and left lateral mass of the atlas. Does anyone have experience with this? We got conflicting opinions from our rad oncos. The first one suggested volumetric arc therapy to radiate those 3 spots asap. The second rad onco doesn't think we should radiate unless I'm feeling symptoms, and the neurologist agreed with him. They said the chemo will get it, and that we can monitor every 3 months to see if it progresses. And if it does, then we can proceed with the radiation. We have decided to postpone the planning for the radiotherapy to my skull lesions while we think it over. I hope someone here can weigh in on this or share their experience.0 -
cynathea, thank you I am happy you have no progression, but I'm sorry that you still have daily pain. I have daily pain that is worse at night as well and go back and forth on whether to add some lumbar mets to the rads zapping.
I am starting Verzenio and I get my second dose of fulvestrant so maybe that will help and I can avoid radiation at the lumbar level. Or it might be inevitable. My consult with my rads ONC yielded traditional radiation and not SBRT so as a good patient I posed him the question on benefits in my situation on the different radiation techniques. Well if it is available in my area.
I was scared to hear all the minimal organs they may hit with the radiation. Small % but still yikes. Has anyone here had esophagus issues during rads? It sounds like beside the poo problem that throat issues may be a given as well and I am looking to see how I can help myself or do I just roll with it. Maybe it'll be an ice cream type of treatment plan
tigre
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