beach sunrise wrote:YES, try to stay positive as there avenues to explore.
I would definitely have Mederi check IL6, 8 and possibly 10. Those are related to lung health, inflammation.
How are your monocytes?
beach sunrise wrote:Monocytes are not terribly high. Thats a positive!
skimom wrote:Hi guys - I had scans yesterday and results weren’t great. The good is that my liver lesions are shrinking (I have a HAI pump) but my next to non-existent lung mets as of last scan in May have grown a crazy amount. Report shows over 20 measurable with “numerous small rounded nodules concerning for metastasis”
While very discouraged, doing my best to stay positive. Surgeon said radiation not an option at this point because too many and would prevent me from doing chemo while doing it and he feels chemo better option. I don’t see how when they’ve grown as they have. At any rate, he is presenting to tumor board in a couple of weeks to decide on different chemo drugs. He said maybe go back to oxaliplatin instead of Irinotecan with the 5FU or different drugs all together. I can’t do Avastin any longer due to the HAI pump.
I have an appointment on Monday with a naturopath (thank you beach sunrise and utahgal7!) hoping they can set me up with something to aid in all of this as my knowledge is far behind what a lot of you have although I’m doing my best to learn every day.
Anyway.. if anyone has any advice on what next steps I should take I’d greatly appreciate it.
Blessings to you all
prayingforccr wrote:I’m terribly sorry for this.
Take a deep breath.
No decisions need be made now or tomorrow.
See what your options are.
You’ll find lots of help here.
Claudine wrote:Very sorry to read this
I would think that PFCCR and Beach sunrise would have good advice for you, better than what I can say - my husband also had multiple lung nodules, but he had excellent response to Folfiri/Avastin and his lungs have been clear for 4 or so years now.
Sending positive thoughts your way XXXXX
roadrunner wrote:Claudine: That story is beyond awesome. It makes me happy every time you mention it. And it does show that there’s hope even in the really tough spots.
Skimom: It might be worth looking at the growth rate of the pulmonary mets over time. From what you said it appeared to be significant right after surgery, perhaps increased. Pulmonary mets are usually slow-growing, so much so that some people believe they shouldn’t be resected (though this is now a minority view, I think), and even without treatment people can live for years with them in some cases, with effective chemo or combination therapies even longer. Getting back to your issue, it might be worth asking if the June surgery might have speeded things up. It is a known phenomenon, though it is not by any means universal, and one of the downsides to surgery in stage 4 disease. But I think things also generally slow back down again, and perhaps the new therapeutic approach will have a better chance—even stable is good! Gets you more time, and more options. Not sure if this is relevant, particularly in the absence of information on your metastases’ “doubling time” before and right after surgery, but in any case I wish you the best with the new approach you and your team select. It may be worthwhile to get a second opinion on overall strategy, too. Your situation is definitely complex.
Bpaint wrote:Skimom—I’m sorry to hear about the lung nodules. But you have lots of options still. My husband also developed numerous lung nodules (now about 50-60 of them) after he was off chemo for several weeks for surgery. Like Claudine’s husband, folfiri and vectibix have helped keep them in check, but they are still there and growing, and the standard of care drugs aren’t working anymore. He did have radiation on a few of the larger spots, just to slow them down, and the radiologist did it simultaneously with chemo.
I realize vectibix may not be an option with your mutations, but have you talked to your oncologist about clinical trials? There are several right now targeting KRAS mutations, and the bot/bal trials don’t preclude KRAS either. That’s what my husband is currently trying to get into, while also waiting to hear from NIH. We have also been interested in some of the trials targeting CEA because like you, my husband’s cancer produces a lot of CEA. They are still early phase, but look really interesting.
CoolHandLuke8723 wrote:Posted an article on Melatonin by the Life Extension Foundation that you may find helpful. I am taking 180 mg of Melatonin before bedtime to try to suppress metastasis while I am sleeping. If you are having mets growing or expanding in size, you might want to consider following my example and start taking melatonin at night plus several times a day in an effort to suppress growth and metastasis. You can buy 60 mg melatonin capsules on Amazon - that's what I did, then I take three capsules before bedtime. As I told my oncologist yesterday, my goal is to stabilize the cancer and stop the mets - if I can make cancer a chronic condition I can live with and that doesn't grow, I can live with that since I feel fine.
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