Bone Mets Thread
Comments
-
Has anyone had Mets to T11 and had radiation done?
My lesion has responded to chemo and a biopsy showed that it is now a callous. It was GATA3 positive. The latest MRI showed that it was slightly smaller. My RO thinks I would benefit from radiation to reduce the risk of spread/recurrencebut I’m concerned about long term side effects and inadvertent radiation to other organs.
Has anyone declined radiation when it was recommended? How was that received by the RO?0 -
How many sessions did the RO suggest?
0 -
My RO didn’t specify how many rad sessions I would have, only that it would be done during the week after the treatment for my right breast/lymph nodes. So, not more than 5
0 -
Cyathea-Are you oligometastaic? ( no more than 3-5 mets, in one place, bone or an organ). Because otherwise MOs usually don't suggest rads, except to relieve pain...
if it is for limited mets, I'd do it in a heartbeat; it would make a big difference in prognosis and could potentially even be curative.
and nowadays rads are pinpoint precise, no need to worry about scattershot
0 -
Cyathea: In December, I had 5 sessions of radiation to T10 and surrounding area to treat spinal canal compression from a soft tissue component of a large metastatic lesion. It wasn't yet touching the spinal cord but was considered inoperable because of disease to vertebrae above and below. MRI in March showed a huge improvement, with no soft tissue component at all. So radiation worked! Alas, I still have extensive bone mets, but that was the most clinically worrisome.
0 -
Cure-ious, yes, I am oligiometastatic. This is another reason why I am questioning my RO’s recommendation. I have not had a PET scan, but a full MRI of my spine did not show any other lesions. So I think I just have 1 and that didn’t show active metastasis when I had a biopsy after chemo.
JodyJ I’m so glad the radiation worked for you. If my lesion was large and painful, I would do the radiation in a heartbeat.
However, my inclination is to tell my RO “no, I do not want to do radiation to my spine at this time.” I’ll keep doing Kadcyla or Herceptin for a year and if I get new mets I can get radiation then.
The reason that I am reluctant to say “no” is that my RO is nationally known in the US as an expert in this area. I’m not even in the medical field so my ability to do appropriate technical due diligence is very limited
0 -
At MD Anderson 25% of oligometastic cases could be cured by radiation; lack of current metabolic activity in the area is not at all the same thing as zapping those cells out of existence; they're just sleeping, you need to kill them
0 -
I agree cureious. My met just woke after 3.5 years stable. I got randomized to the radiation arm of a MDA trial for oligo patients. I have no pain but we start zapping in two weeks.
0 -
Thanks for sharing Cure-ious! Do you know the criteria they used for oligometastatic?
0 -
Did anyone else participate in the Living Beyond Breast Cancer program today on Bone Mets? It was Dr. Adam Brufsky (sp?) from Pittsburgh who spoke, and I thought he was fabulous. He talked about the difference between the two drugs currently being used for bone mets -- zometa versus xgeva -- and had some interesting slides. This will be posted on Monday, I think, for a month on LBBC's website.
The other very interesting thing he talked about was local radiation treatment to bone mets. He said that at Pittsburgh, they are using a lot of Cyberknife for this, as well as other targeted radiation like EBRT and SBRT, and he even mentioned microwave ablation.
If you were not watching and if you have any interest in these things, it might be worth your while to take a look when it's posted. He was very positive about bone mets with all of the local and systemic treatments available now.
0 -
@bevjen I’d love to hear more. Where do I listen
0 -
Bev, I signed up and then forgot! Is the entire episode available online? Doesn't it continued into tomorrow? Thanks so much for the summary.
0 -
thanks for this BevJen. I’m putting it on my calendar.
0 -
BevJen, I was watching today though I came in a bit late. I thought Dr. Brufsky gave good information, but I'll need to watch again, he spoke so fast! I found it interesting about cyberknife, etc., and being able to use it repeatedly in one area. I was a little confused about the trial for Xgeva taken monthly vs qtrly. I thought it'd been approved already since I've been getting qtrly for over a year now. I did start out doing monthly for a year after 2 yrs of Zometa. Did he mean there is a trial for starting out with qtrly shots, so never having to take it monthly?
Cyathea, I'm late to chime in about rad's, but I had 10 treatments to T11 & left illiac crest in Jan. 2016. I'm NEAD in bone since. The rads were very targeted and I only suffered a bit of fatigue towards the end. No skin damage at all. My MO is the one who advised me to do it with curative intent. I had no pain and still don't. RO was on the fence and leaving it up to me, but I didn't appreciate his indecisiveness. I'm very glad I did it. Hope that helps.
0 -
Hi BevJen.
I also participated today and thought he was awesome. I had to chuckle as he did go fast but it’s common for passionate researchers. I was a bit torn on which breakout session to attend but thought I chose well.
0 -
Lynn,
Yes, the conference continues tomorrow. Unfortunately, I'm driving tomorrow and won't be able to attend, but I thought the meatier things were today anyway. Supposed to be available at LBBC.org on Monday, I think they said (Living Beyond Breast Cancer).
Bliss, yes he did go fast, but I thought he was very good. I am not yet on either of the drugs he talked about -- just figured out definitively that I have bone mets and where they are -- but with the info that he gave, I think I'd be fine with the Zometa versus the Xgeva -- yes, I think he said there is a trial to do Xgeva quarterly versus monthly? But I didn't think that the pros for that drug outweighed the cons, as opposed to Zometa? Maybe I just don't know enough.
0 -
Hi BevJen, I did well on Zometa, but I think my MO switched me to Xgeva because of my advancing age perhaps causing the need for future invasive dental care. Apparently Zometa's half life is much greater than Xgeva. I'm not certain of that and I keep forgetting to ask her exactly why she switched me, but my understanding from old BCO posts is that Xgeva leaves the system quicker than Zometa. Luckily, I have very good teeth and only need cleanings, but my dentist was worried about me being on Zometa. An oral surgeon I had a consult with said if I ever needed an invasive procedure he could deal with it effectively, but just needed to know I was on it (Zometa).
0 -
terrible our government would do this. They cut funding for breast cancer so 1000 people got layed off
0 -
Hey all.
I too attended the LBBC conference and listened to the session on Bone Mets. I had some questions---- Why did my insurance agree to start me on Xgeva from the beginning? Sounds like Zometa is generic and less expensive. Also, my MO did the first year of monthly Xgeva and now I do every 3 months. But this speaker said that dosing is monthly with Xgeva for now, with a trial doing every 3 months to see if as effective. Also--- Sounds like after 5 years of these meds we are to stop them. Could cause fracture of femur in some with extended use after 5 years. Hum. I have been on 2 1/2 years so far.
Anyone of you on these meds for longer than 5 years??
The speakers should be available to view on LBBC website after Friday June 19, is the way I understand it.
0 -
candy-678 - I believe Dr. Brufsky was also mentioning the dosing interval as a possibility of every 3 months so it could be continued beyond 5 years but with less risk. The data are not yet available to compare the efficacy of the 1 month vs 3 month dosing for the standard and the standard dosing is 1x/month, although he noted some MOs are using 1x/3 months but didn't expand on that. Certainly if we are living longer (yes please) and want/need to stay on Xgeva, the 1x/3 month dosing (early on if efficacy is the same or even at 5 years) would be really beneficial to reduce risks.
0 -
I too was confused by Dr. Brufsky's dosing/trial comments on Xgeva, so I'll need to watch the video when available. I believe he is providing his email address to LBBC to give out to anyone with questions.
0 -
My MO has indicated a few times that these drugs stay in your system. I stopped Pamidronate after two years as we were a bit concerned about my kidneys (looks like higher dose Verzenio was increasing my creatinine). I had been taking it monthly.
Based on what I heard, I will likely suggest to my MO that I go back on it, every three months. Will see what he says. I asked once before about reducing the frequency and he said, we usually dose monthly... may need to provide some references.
0 -
oh, I love listening to Brufsky, will definitely go watch on Friday, thanks, BevJen!
0 -
Illimae, YES!!! we will all be in your pocket in 2 weeks! Bring it on...
0 -
Folks,
I know that Dr. Brufsky offered to field questions, and told LBBC that they could release his email if they wanted to.
If inquiring minds want to know (and ask him a general question), you can simply google brufsky & Pittsburgh , and voila, his bio and email appears. I just loved that -- the emails of so many well known docs are MUCH more difficult to find. I just shot him an email, so we'll see if he has the time to respond. His clinical areas of interest are described as follows:
Dr. Brufsky currently directs the Comprehensive Breast Cancer Program of the UPMC Cancer Centers and the University of Pittsburgh. He manages approximately 30 clinical trials investigating various aspects of breast cancer etiology and treatment. His main clinical interests are in breast cancer medical oncology with a particular interest in metastatic breast cancer.
0 -
BevJen, thanks for the info on Dr. Brufsky and emailing him. I'll be interested in how quickly he responds.
0 -
Cure-ious, lol, I love that
0 -
Bliss,
He responded within an hour of my email -- just a brief response, but he answered my question. I sent him back a quick email saying "Thank you. I appreciate it." He responded back immediately with "You're welcome." Must be a heckuva nice guy, and I'm keeping him in mind for future second opinions.
0 -
I’m sorry I missed the conference but I’m going to check out Dr Brufsky’s session. He’s my MO and he is a great doc, definitely one of the best. He listens to concerns and tries to give me the best possible QOL during treatment. I feel very lucky.
I have an MRI and simulation mapping for my T11 lesion on Thursday. I asked my RO about possible GI SEs and he indicated that the radiation will be very targeted and that there shouldn’t be any issues. 🤞🏻🙂
0
