Anxious about mixed scan results
Hi all,
ER+ HER2- with mets to lung, liver and bones for 6 years. Been on xeloda for about 4-5 months now and had my first scan, which showed significant improvement in all areas except for two stupid little bone mets. It worked in my lungs, liver, every other bone, aside from these 2 (one spot on hip and one in femur) which showed progression.
my onc is already talking about next medication - am I crazy for wanting to try xeloda longer? I’m terrified of giving up after a few months, especially when it worked in all other spots. If you have significant tumor reduction in 8/10 areas but also progression in 2/10 areas, does that mean the medication doesn’t actually work? Is there a chance my next scan could show these areas as improved or do you think it’ll continue to get worse?
I tried asking my onc but she’s super tunnel visioned and just kept saying she wants to take me off if it’s not working 100% and I’m scared.
Thank you.
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Hi @aymelle,
We're so glad to hear treatment is (mostly!) working for you! Have you considered asking your doctors about a targeted radiation therapy treatment for those two pesky spots? More information here:
We hope this helps, and that others will be by soon with more insight!
—The Mods
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Aymelle, I agree with the moderators. At 3.5 years on firstline I-F, my scans had two areas that were not responding, and the radiation oncologist zapped them and I was able to continue for another 1.5 years. I would be cautious about an oncologist eager to drop treatments, its not like we have so many great ones and things can slow way down when you get to the point of looking at clinical trials Recent studies have shown an overall survival benefit for people who incorporate some spot radiation, however I read that it is also common that you have to claim pain in those areas in order for insurance to cover it
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@aymelle Hi, I also agree with all here. I had a pesky lung met left that was the only area that didn't respond to Xeloda. I had SBRT a couple weeks ago to the lung and my RO said there is a 95% success rate. i will have a CT in November to check. Did you have radiation in the past? Was thinking if you already had a RO in your pocket you can get a quick consult?
Also agree that we need to proceed with caution to give up on a drug, so no you're not crazy! I asked my MO in the past what change would make her change drugs. She responded that she usually will change when she see's a 40% change in progression.
I would discuss with MO and push a little. There is absolutely no harm done in consulting a RO. Sending positive vibes that you find the answers you need.
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@aymelle Xeloda was my 2nd line treatment and I had mixed results after my 1st scan. My oncologist was in favour of me continuing with Xeloda. My 2nd scan showed excellent results, 3rd scan showed mixed results again, although it was “mild” progression, so my oncologist was still ok with me continuing with Xeloda. I continued on the treatment for 4 more months, in spite of the mixed results. Overall I stayed on Xeloda for one year total.
My 3rd line after that was Kisqali/Letrozole/Zoladex which was successful for 3.5 years. About 1.5 years into that protocol I did have one Lung nodule that was progressing. They considered me oligoprogressive and I was approved for SBRT on that spot. It bought me another two years on that treatment.
I need to update my treatments/diagnosis area, but for reference I was diagnosed DeNovo in June 2017, and I started my 6th line of treatment in April. (Enhertu).
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I don't know the average time for Xeloda to show results, but I totally understand you wanting to give it some more time. I started Fulvestrant around mid April and then Verzenio about early May. Well it was late June or early July that I had my first scan and it showed improvement in a lot of areas but 2 likely new areas (bones). My oncologist immediately wanted to stop the treatment and move to IV chemo. Well, I had read that it can take 3-6 months sometimes to see any benefit from the Verzenio/faslodex combo. I told her that and asked if I couldn't stay the course a while longer. She said that 2 months was usually plenty of time and that they usually see a much more "robust" reaction than I had had. Well, she reluctantly agreed to another month. I just had scans yesterday and both the bone scan and the CT show a "stable" situation with no progression. I am so glad that I pushed for that additional time, because just like I had read, it looks like it took about 4 months for this to show a benefit and no new progression. Like yours, my oncologist also has tunnel vision and had I not pushed back, she would have cut me off those drugs, and likely all anti-estrogen and CDK inhibitor drugs altogether, and would have left me with far few options. That adage about being your own advocate really applies! Like others here have expressed, I am in no hurry to run through all the available drugs in a hurried manner. This same oncologist was real quick to suggest that I drop Letrozole too, a few years ago, when she asked me how I was doing after I just started it and I told her about some of my side effects. She quickly suggested that we switch from Letrozole to Tamoxifen and again, I said no. I hadn't even said that the side effects were a big problem much less intolerable, it's just that she asked, so I told her I had the muscle and joint aches, etc. and she was ready to drop the drug and move on to another one. Trust your gut, ask around, and read around.
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