Bad news on scans. Advise welcome

[skimom]

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

~Sara~

[beach sunrise]

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?

[skimom]

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?

Monocytes 6.2 last week.

[beach sunrise]

Monocytes are not terribly high. Thats a positive!

[skimom]

Monocytes are not terribly high. Thats a positive!

Thanks, I’ll take any positive! That along with the fact that I actually feel good. I keep saying if I woke up with amnesia (and had my hair) I’d never know I was sick. Could be so much worse and I do know that so am giving extra thanks to God today and looking forward to the next phase of this battle

[prayingforccr]

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

~Sara~

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]

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]

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.

[skimom]

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.

Thank you prayingforccr. Really appreciate the words of encouragement. Went for a nice little 3 mile hike this afternoon and feel so much better. I really admire your story and bravery in refusing treatment you didn’t feel would help you. I struggle with saying no to doctors who I just assume know what’s best for me better than I do. I’ve got to change that mindset for sure. Will see what happens Monday with the naturopath and what oncologist says on Wednesday.

[skimom]

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

Thank you Claudine! I can’t wait to post a story about the excellent response I had to whatever comes next. It’s going to happen!! So happy for you and your husband. Such great news

[skimom]

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.

Thank you much for the well wishes roadrunner. Yes the surgeon did say he believed it was due to the surgery. Said sometimes they are there just waiting to show up and surgery makes it happen. Also higher chance due to my KRAS mutation. I really don’t have any other information on time other than my last scan was on 23 May and they weren’t there. I did stop chemo on 18 May and did not restart until July. Was off of it for 9 weeks. With my CEA continuing to decrease as of 3 weeks ago (I get it checked again next week) and the only rise I had was in the time right after surgery I’m praying they are now shrinking it just doesn’t appear that way since the lack of earlier scan. I do believe the therapeutic approach will help things along, and yes I agree the more opinions the better. If I don’t hear something spectacular I’ll be getting another

[Bpaint]

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]

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.

[skimom]

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.

Thank you for the positive feedback Bpaint. It really helps to know others believe there are still many options out there. I’m sorry that the drugs are no longer working for your husband. Happy to hear they were able to do radiation though, that’s great! I am going to speak with onc about trials when I see him next week but really think that my appointment with naturopath holds the most hope for me. That with the chemo drugs I think will be my best option at this point. The KRAS mutation I have I don’t think is very common (Q61R) so not really any trials for it that I know of. That and the fact that I have a HAI pump I think will make trials difficult but I will surely ask. Prayers to you and your husband that he is able to get into a trial or find something else that works

[skimom]

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.

Thanks CoolHandLuke8723. I do take melatonin but not nearly that much! I’ll look into it for sure. I love that you are doing all you can to stabilize it without chemo. Prayers that it works for you. I totally agree that making it a chronic condition that doesn’t grow would be spectacular. I feel totally fine too, Thanks be to God! Could be so much worse