Bone Mets Thread
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(Cross posted with xeloda thread)
Hello to all,
Well, I am home from the rehab hospital. I've been there since May 1, after my hospitalization at Hopkins and subsequent surgery on my R hip (cancer and arthritis ate through my bones there) and on my L hip (same scenario, just not as bad.) I spoke with my oncologist today and here's the plan. I will see my surgeon next week and talk to my radiation oncologist. We will couple that with xeloda, which is one of the few meds that she says can be used with radiation. For now, we will not be pursuing any other local treatment, such as for my liver. She wants me on systemic treatment ASAP.
Fingers crossed that xeloda goes smoothly. Even though I spent 3 weeks in the rehab hospital, I'm still a mess. Walking with a walker, lots of precautions, etc. to enable the hip to heal.
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So happy you are home and back here
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BevJen, so glad you’ve finally made it home. I hope the healing continues and speeds up for you.
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Thanks Nicole and KBL. It's good to be home, but it makes me realize how much more PT I am going to need to get better, though. Home health is coming here later today to assess my situation and to set up in home physical therapy for me.
Interestingly, when I talked with my MO yesterday, she doesn't want me to do any local liver treatment at this time. Her reasoning is that we had been focusing on local liver treatment in the past (three microwave ablations) and in the meantime, my bone mets had crept up on us in a big way and we really weren't thinking those were the ones that needed to be watched. So she wants to do systemic treatment until we can perhaps slow the cancer down and then we'll revisit local treatment if appropriate. Right now, we are planning on starting xeloda along with radiation to my hips that were just operated on and then we'll figure it out from there.
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Good luck, Bev!!
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Bev....I am a little confused about Dr. S's response.. I mean I agree about wanting a systemic therapy for all the cancer (bone mets as well as liver) however...the way it sounds in your post is like she hasn't been trying with systemic therapy to do that...when in fact she was with Ibrance..and kept insisting (even when you wanted to move on) to stay on it?? Now she is saying no to Y90 or another local therapy? I have to say I don't agree...AGAIN I agree that we all need a systemic therapy BUT...if our tumor burden in our liver becomes to great or we start getting tumors in bile duct..that can lead to liver failure...so I would want the local therapy and also a systemic.....now, If you liver can tolerate that.
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Glad to hear you are home Bev. Hopefully physio will get you back in full stride as quickly as possible. From my perspective, I think you MO is laying out a good strategy. From my understanding, local liver treatments require you to be off most systemic therapies and you need to get those bone mets under control. I hope Madame X is the ticket.
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Wishing you well BevJen. Do the home PT and kick the cancer with Madame X.
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BevJen, I'm glad you were able to return home. I found Xeloda to be very tolerable, especially after a slight dose reduction. I hope it's the same for you!
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BevJen, glad you're home and have a good plan. I think with multiple mets sites it does become one of those spinning plates acts & you have to focus on the one causing the most trouble right now. With luck systemic tx will knock down all the sites. Fingers crossed for speedy improvements with strength & mobility!
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Thanks to all for your well wishes. I like Moth's analogy of spinning plates, and I think that's what my MO is doing. The last two microwave ablations took a LOT out of me, and she has expressed concern about that and also about how much the surgeries have taken out of me, and so I think she's looking right now for a treatment that she can titrate down to minimize side effects while I do radiation to my hips.
I will look into local liver treatments again -- specifically y90 -- once we get through the radiation and see how things are going. I never expected to have bone mets rear their ugly head like this, and it's pretty scary. So I think all my MO is trying to do is to get ahold of those and then we'll revisit everything.
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so I just finished day 8 of 10 radiation forsacrum mets.....apparently if I dint start feeling better soon...(bc this is around the time I should be feeling relief he said) then my cancer is resistant to radiation....I am feeling better than when I first went but there are sometimes where it is still hurting really bad...the one improvement is I am not really limping...
I am feeling so discouraged right now. ...and scared. I mean if the radiation doesn't work...well I'm basically done. 😔
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Nicole, the radiation will continue to work on thr tumor for weeks after the final session. It took a few weeks for my sacral pain to finally fade, but I took fewer and fewer painkillers over time until I didn't need them anymore. The initial sessions did cut the level of pain somewhat but it wasn't a miraculous jump off the table I was hoping it would be.
I'd give it a bit more time.
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Just posting in case anyone may be interested:
AstraZeneca is looking for photos and and quotes to be posted on their website, Beyond Pink: Sharing Our Metastatic Breast Cancer Story
All you would need to do is:
1. sign release form
2. select a photo to share
3. write quote (Per AstraZeneca: The quote can be anything you want to share with the community to inspire others, what has given you strength, what you hope for the future, etc. Please no mention of companies or treatments.)
(No video recording at this point).
We only have till Tuesday, June 2, so if you're interested in being featured, please submit quickly
Please email Michelle.Cosgrove1@astrazeneca.com for the release form.
Thanks so much !!
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Sondra Thank you. I hope more people will chime in as well..
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hi NicoleRod - i understand that feeling of hopelessness when you feel that the radiation isnt working. it takes time to work, i wouldnt feel that the tumor is radiation resistant until a few weeks after you finish and you dont have any pain relief. breast cancer is extremely sensitive to radiaion. it's not instantaneous it happens slowly, all of a sudden you realize that the pain is less. you cant look at it everyday and say it's not better than the day before. you need to look at how you were feeling when you first started the rads and how are you feeling now (after 8 treatments.). sounds like it is working, but i do understand when you have a lot of pain and they tell you you will feel better by the 8th treatment and you still have pain it is frustrating, you get so hopeful that the pain will be gone and then it's not.. hang in there. and you said that already you arent limping. that's a good sign that it's working.
keep thinking positive thoughts, i'm sure that you will continue to feel better and better. and like sondra wrote the radiation continues to work for a long time after you finish treatment.
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ts...thank you... actually it was the RO that made me feel that way.l...he was like ...passive aggressive... first he said... "Well you should be feeling some relief around now" then he said something to the effect of "well maybe by next week" ..then I asked...is there a change it wont work what would that mean...he said "that would mean your cancer is resistant to the radiation."....
I will hold on to hope!!!
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The MO was surprised I was still on crutches after radiation too... I think if they haven't experienced this or are used to mostly early stage women or small mets radiation they aren't going to understand fully the level of pain and impact. It's one thing to see it on a screen and know the theory, another to live it.
Ts is right, the fact you aren't limping is a great sign. That was the first thing for me to go. My first rads session I needed partner and uber both ways, by third I was able to take the bus with him one way, by fifth I did it myself. I was still in pain, but it was not as high and I could at least move. Three weeks later we took the bus to the movies, sure, with crutches but not pain so intolerable I couldnt handle the five hour outing.
It'll get better just hang in there!
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Nicole, I had sbrt to spine, which might be little different. But radiation generally works for a long time. I did not have pain before radiation but actually about four months after. I thought I have progression and the scan was better. The suv on PET CT went down very slowly and it still goes down every PeT I have. SUV started on 8 something to 4 for couple scans and last time April this year it was around 2. The radiation was in 2019. And same happend with radiation to other two spots in 2020. Pain later. I also thought that it is radioresistant, so I understand your worrie
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Thanks JoynerL for the article. I am fully vaccinated but still take many precautions--- not out in crowds, always mask still, and social distance when I can. You do not know who in a crowd is vaccinated and who is not and are asymptomatically spreading the germs. I am glad I am vaccinated, and it gives me some reassurance, but still..... And if we are told we need a booster, I will be the first in line. Boy, I wish Covid never occurred. Hard enough having cancer, but being fearful that I will catch this and die even more early is really scary.
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Not sure what link you are referring to Mausie. If you mean Joyner’s post, I have no trouble accessing it and it’s not the same link you are providing.
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I've had links not open when I tried to open the link from the email rather than after opening the post on the actual BC.org site. Perhaps that's the problem, Mausie?
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it looks like she is opening the link from the original post in this thread, which is really old at this point
here is the breast cancer and bone pdf from that same site -0 -
Nicole - When I had my radiation for my collarbone in Feb - March 2020, the RO told me that the cancer will not die until the cancer cells try to divide. She checked me part way through my radiation and it looked like my tumor (which was over 7 cm) wasn't responding well to the radiation but when I had my first scan in early July 2020, my tumor was NEAD. It may just take more time to get the response.
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Cowgal..thank you so much for mentioning that. Yesterday I started to actually feel better...so I went on a short walk w/ my husband and our new puppy and now my glute is hurting again ughhhh. I do feel better than when I started radiation though so I do think it may be working *praying*
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As a result of my recent treatments to my femur (complete hip replacement on R; nail/pin inserted on L} I had an appointment today with my oncologic orthopedic surgeon. He said that "someone like me" should be having nuclear bone scans at least every 6 months. He didn't identify what he meant by "someone like me" but I thought this might be interesting to folks on this thread.
My regular MO doesn't really set time frames for scans, although they tend to fall around every 4-5 months.
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I'm currently on an every 12 weeks schedule for nuclear bone scans + CT. Interesting how different drs decide this
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BevJen- Glad you are doing some better. I have not had but 2 bone scans in the 3 1/2 years of bone mets. Last bone scan was Nov 2019, I think. My MO mentions she may order one but has not so far. We are concentrating on the liver mets with MRI's of the abdomen. But I have not had any fractures from the bone mets either.
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