Bone Mets Thread
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@iacmelis11 , I have Barrett’s esophagus and am under surveillance for esophageal cancer. The gastroenterologists who treat people with dysplasia use low level laser, radiofrequency ablation and cryoablation to eradicate the precancerous condition. The doctor in that department who did my EGD took care of it. You would need to find a large hospital that has this gastro sub specialty. My lesion was at the top of my esophagus which meant it was in the area they treat. There are ENTs who use lasers for surgery but they would also be found in large teaching hospitals. You would probably want to find a head and neck cancer specialist since people with that condition sometimes have radiation injury.
Radiation injury can appear long after treatment. It is also likely that another infection can activate it. My RIPF was diagnosed 7 months after I finished rads; it took 5 months of steroids to stop its progression. I have been told to avoid respiratory infections and intubation since these can reactivate the organizing pneumonia and out of control scarring. Delayed side effects can show up years or even decades later. One of a tiny group with this condition in another forum developed it 40 years after he finished radiation for Hodgkin’s lymphoma.
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@maggie15 what is RIPF? I am between Yale and MSK. My MO is at Yale and he's referring me to an ENT there who specializes in this type of head and neck post radiation nonsense. I am guessing they will be able to tell me if they can do anything with the Laser. I am really on the fence with starting the HBOT. I of course want relief but will be so frustrated if after 30 days 2 hours a day it really isn't helping. Guess we have no way of knowing
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@iacmelis11 , RIPF is radiation induced pulmonary fibrosis where radiation sets off an inflammatory process trying to heal lung damage but causes progressive scarring in the interstitium (tissue and space surrounding the alveoli) preventing oxygen transfer. Most people initially get pneumonitis which can be cured by steroids before it gets to the fibrosis stage. I seem to have skipped the initial warning stage so much of my right lung doesn't work. It can sometimes be stopped with months of steroids but it can start up again, especially if something irritates the lungs. There is no fixing the scarred lung but I use a steroid inhaler to stop the horrible cough that accompanies it; the scar tissue exposes nerves which are normally protected to the air. My hope is that two proposed clinical trials in Mexico and China which never ran due to lack of participants were right in hypothesizing the steroid in my inhaler would help prevent progression. If anyone gets a nerve wracking cough while taking one of the many cancer meds that have pneumonitis as a SE, insist on a lung CT to catch it while it can be cured. It's rare (hence no clinical trial participants) but it does happen.
It's good that you are having the consult with the ENT at Yale. Checking out the possibility of laser treatment or something else before beginning HBOT makes sense.
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Has anyone had a month's treatment break, and how was your oncologist about you doing this?
I am on letrozole and Ribociclib, my joint pains have become very bad, and the arthritis in my knee and finger has worsened. Would a treatment break help with joint pain? I am concerned that a treatment break would affect my stable status, but on the other hand, the joint pain is affecting my quality of life.
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@sunnidays i understand what you mean about the joint pain. It’s wretched. Have you tried any other solutions, like physical therapy, before you take such a drastic step?
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@sunnidays-When I had joint pain in my hand from letrozole, I started taking a ginger pill every day and the pain completely went away. Recently I have had hip pain due to arthritis. NSAIDS worked very well for me, both celebrex and Diclofenac. Now I am trying to get off NSAIDS. Last week I had a very helpful acupuncture treatment and the doctor also put me on Chinese herbals. My hip has improved quite a bit after only a few days. I would be very wary of a treatment break but can relate to your concerns about joint pain affecting our quality of life. IMHO, uncontrolled cancer has a worse impact on QOL.
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@suunidays - have you tried seeing an acupuncturist or using a gel/cream such as arnica. Some recommend Voltaren (but check for drug interactions first).
My cousin is a physical therapist and she has recommended the following to me for inflammation and joint pain. It has definitely worked for me. You can find lots of information online including utube videos.
DISCONTINUE IF THIS CAUSES YOU TO EXPERIENCE ITCHYNESS OR ADDITIONAL SWELLING. Remove 1 or 2 firm, outer leaves from a head of cabbage. Cut out the hard center vein. Place leaves between plastic wrap and lease the juices using a rolling pin or bottle. Wrap the leaves around your knee and secure. I use the plastic wrap from when I released the juices and then an ace bandage to hold in place. Best of you can leave it on overnight but if not, at least for 2 hours.
I, personally, am into trying alternative methods like those suggested above (or by tougholdcrow) before I would take/request a treatment break. I would be concerned that a break would affect my status, especially if that status was stable or NEAD.
Hope you find something to help you with your pain.
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Thanks, everyone. I seem to be experiencing a lot of side effects that were not present before. I suspect that the longer I am on treatment, the more side effects are showing up.
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Hello everyone, after up and down issues with the Verzenio and possible switching treatments. I have had great improvement. Many of the lesions have resolved. Pet scan report said in part "No other FDG-avid disease. Prior areas of FDG uptake in right sacrum and right femur have resolved. Small sclerotic lesions in the L4 and L5 vertebral bodies and lytic lesion in the right pubic ramus are stable and have no abnormal uptake." Looks like for now I will continue with the Verzenio and Flasodex. This is the best news Ive had in months. I just wanted to share with you all . My oncologist was just about to switch me to Xeloda but we stayed on the Verzenio and flasodex till this last Pet scan. Just hope this encourages some of you. God bless you all. I know with this awful disease how things can change so fast, but I am grateful that my treatment will remain the same for now. God bless you all.
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@jen1 - Very happy for you.
Did you have progression on PET scans before this while on Faslidex and Verzenio?
Did you see an increase in your markers prior to your last PET?
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@jen1 Thanks for your update. Happy for you. It's a good reminder that sometimes these medications take a while to show positive results. God bless you.
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goingtobeatthis/ initially I was put on Verzenio and Flasodex in Jan 2024. I had excellent results on the Pet scan 3 months later markers were going down but I started having lung issues on the 150 of the Verzenio. We reduced it but then markers started going up a little more every month. We had another pet scan some months later mixed results . Some lesions shrunk slightly but the one in my hip was a little bigger. Then more lung issues peumonitus/ pneumonia I was not real real sick but felt lousy. Before this hip pain got worse had radiation to it felt better. Slight drop in tumor markers but then started rising again Had discussion about possibly changing treatments in addition another tumor markers that had never risen started to rise. I was off the verzenio for about 2 weeks and then maybe again for a week . We started back at 100 and in June we did another Pet and everything went down and the results that I shared on last post. I feel really ok. I have tolerated the verzenio pretty well and flasodex minus the lung stuff lol. I just hope this encourages you all.
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Hi Chicagoan yes sometimes we have to give it time to work. This protocol has been relatively easy. I have not even at the severe diarrhea from the Verzenio. My onc was going to put me on Xeloda if the pet scan changed. Because the markers were continuing to go up. My onc says that a lot about giving the meds time to work.
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@jen1 wow!I developed pneumonitis from Verzenio. After a month off my dose was reduced. Tumor makers went way up and scans showed progression all over. My oncologist immediately switched me to Xeloda. Interesting that Verzenio may have worked after all. But Xeloda is working well for me and I feel fine on it.
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I have been put on an arthritis medication, and it has helped with the joint pain and the knee pain.
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What is the arthritis medicine? I have thought that might help.
Thank you and have a good weekend
Shirley
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Its called
celecoxib (Celebrex)
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For me, yes —
bad weather has always affected my bones and the vertebrae where I have mets,
especially the humidity.
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Had my kyphoplasty last Wednesday. All went well, although I have a little more pain today in the ribs just below and to the right of where the procedure was done.
I was told by the Vascular Interventional Radiologist who did the procedure last week, that I am going to need radiation treatment to T12 to completely destroy any cells that the ablation did not take care of. When I mentioned it to my MO, she said that she would want that to only happen on a week before an Enhertu infusion. That would mean either the week of 8/4, but since I can't get an Thoracic and Lumbar MRI done before 8/1, that is not going to work. That means waiting till the week of 8/25, in which case I am wondering if I should wait till after my infusion on 8/12 to do the MRIs.
Has anyone on Enhertu needing radiation ever heard of that restriction from their MO?
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Gosh. Glad to hear things went well with kyphoplasty. I can't speak to the radiation though. I missed the bit about ablation. How, why and where was that done?
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@gailmary - I had a tumor in the middle of T12 vertebrae. Because of the size of the met, it was decided that the best course of action was to treat it first by ablating (burning the cells) and filling the area with cement in order to prevent a fracture. The second step, as I mentioned will be to do radiation to the area to destroy any remaining cancer cells in the vertebrae.
The procedure, itself, was done with moderate sedation (versed and fentanyl) and I was discharged the same day. Did have to take Methylprednisolone dosepack for 6 days to help with an inflammation.
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Wow. It's amazing all the weapons there are in this War on cancer. I hope you win this one.
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@gailmaty - that's my plan!! Just waiting for the Enertu to kick on/in.
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hi everyone,
This is an update on my condition that I previously described here — perhaps it will help someone going through a similar situation.
I had written earlier about the unexplained rise in my CA 15-3 tumor marker.
The PET scan did not show any new lesions, and the existing ones are in continuous regression.
However, the MRI showed a suspicious area in the T9 vertebra, which was accompanied by some pain — though the pain lasted only a few days and then resolved.
We followed up with a PET scan, which showed no uptake in the T9 area, leaving the oncologist puzzled and unsure about the next step.
He suggested that I meet with a radiation oncologist to explore the possibility of radiation treatment to this vertebra and to discuss the situation further.
After a meeting between the three of us — the oncologist, the radiation doctor, and myself — the radiation doctor suggested we wait for a month and repeat the MRI to monitor the area.
If the lesion shows progression, we would proceed with radiation therapy.
If there is no change, we would continue with the current treatment and keep monitoring.
Regarding the L4 vertebra, where the lesion initially appeared when the disease recurred (and where there is now a fracture),
both the oncologist and radiation doctor recommended doing a vertebral cement procedure (vertebroplasty or kyphoplasty) to fill the gap, which they believe is the source of my ongoing back pain.As for the scattered areas that showed uptake in the recent PET scan, they were soft tissue and not bone,
and the report mentioned that they are unlikely to be lesions.
Still, the doctor recommended an ultrasound to confirm.
I already did an ultrasound of the left foot area, and now I will be doing one for the shoulder area.
My question is:
Has anyone else been in a similar situation — feeling stuck due to conflicting findings and uncertainty in decision-making?
And can a doctor decide on radiation therapy based solely on MRI findings?
I asked for a biopsy, but the doctor was not supportive of that, as the area is risky and full of nerves.
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I'm new to this thread and Stage IV, but was very engaged here 10-14 years ago during my initial diagnosis. I learned this week that I have bone metastases, the largest of which is in my femur and causing pain. There is a fracture risk, and I was told to start using crutches yesterday. I'm waiting for a biopsy and a radiation consult. I went back on an AI yesterday and started a bone-strengthening drug orally. Provided that the biopsy comes back with the same ER+/PR+/HER2neu- disease as before, I will then start Kisqali and monthly zolodronic acid infusions.
I'd love to hear from anyone who was in this situation and wants to share things I need to know. Did anyone have to use crutches, and how well did that work? I'm not sure I'm getting all the weight off my bone, but I will say that pain has lessened since I started using them. What should I be looking for and what kind of questions should I ask at the radiation oncology consult?
Thanks for sharing your knowledge and experiences.
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I have this too so I am following your comment.
from what I know a break of up to three weeks is not considered long and after that everyone be getting a bit twitchy. It’s not easy to find the balance. Well done. Let’s all keep going.0 -
hi.
I have bone mets also and the bone pain decreased when I started on all the treatment within about 6 weeks so hopefully that will happen to you too..I haven’t had radiation yet but there are lots people who have so hopefully you will hear from a few of them soon. Take good care of yourself xx
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@dangermousexl and @sunnidays - FYI, this was my experience when I took a 2 week "vacation" from Verzenio (CDK4/6 inhibitor) and a 1 week break from Letrozole (AI inhibitor) in February 2024. Also, I am not saying that it will happen to you.
My body had to get used to the medications all over again. In addition to the big D attacks which happened for quite a while, I experienced some stomach issues for a number of weeks and peeling of the skin on my fingers which never reallt improved until I stopped the two drugs this year.
Wish my MO would have told me that was a possibility when I asked about taking a break. Never would have done so!
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I also had to take a break for a week post surgery, and Kisqali just hit so strong when I restarted it…I never imagined an additional week of break would make a difference…seems to me that the body was waiting to just go back to normal :(
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