lung mets

[lori314]

I was told today, I most likely have lung mets after my 2nd yr CT scan. The spots have been there from the get go, but they said they were histoplasmosis. Now they have increased and also my CEA level as tripled in the last 4 months. My oncologist scheduled a consult with a pulmonary doctor to do a lung biopsy. The oncologist told me if it is cancer I am terminal. I have so many questions. First I have to decide if I want to do chemo. He said it would be Folfiri. How bad are the side effects? He said i would be on it for the rest of my life however long that ends up being. I had Folfox before. They took out the oxi at the end. Does this make me stage 4 now?

[JDinNC]

If it's lung mets...it will make you a Stage 4. Unforunately, it does make us " terminal" but there are many of us that have lived longer then expected. I had a lung met which was resectioned two years ago and so far I have been NED.

[MSJC]

Terminal is a such a shitty word for a Dr.to use... everybody's going to die of something, we are all terminal! Even if you have metastatic colon cancer, which does mean stage four, does not mean an immediate death sentence.

[DH2Sleen]

Hi Lori, your story sounds so much like my DW Sleen. She found out in December that the spots in her lungs were mets and we were pretty shocked by that news. Her attitude is that she would rather seek a treatment that has a hope of curing her, rather than accept the standard of palliative care. So we started looking for immunotherapy trials and found one at the NIH. In fact, she will get the Adoptive Cell Therapy treatment tomorrow. We can't say whether it will work in her body or not, but we know that it is working in the lab.

Many people look to trails as a last resort when every chemotherapy quits working for them. We have quite the opposite point of view. If this treatment doesn't work, we can look for another, or opt for palliative care later.

You can read more about her story on her blog www.cancerriot.blogspot.com

[Ajane]

Lori, like you, with my second year PET/CT in mid-May, came the diagnosis of a hyperactive nodule. I was told the lobectomy would be done with curative intent. Then on to 8 cycles of Xeloda, Oxaliplatin, and Avastin planned (I'm halfway through the first cycle now).
So, yes, unfortunately, that met made me terminal. But I have to tell you what my very wise husband said to me the awful day shortly after we saw the PET. It put it all in perspective. He said, "you know, none of us are getting out of here alive." But it's just like MSJC and JD said, there's no immediacy to it and there are many stage 4's out there beating the odds..,some who are NED.
I don't know what my future holds or what my limitations are. Right now, all I know is I'm still fighting, hoping for more quality time. That's my wish for all of us until a cure can be found for this hideous disease. Good luck to you, Jane

[canadiandaughter]

So sorry to hear this. My dad has lung mets, has had 19 rounds of folfiri and they are shrinking. The largest was 4.4 x 2.8 cm at the start and is now 1.5 x 2.1 cm. He has had no major complaints with the chemo. He is tired and has had some diarrhea, but nothing that he cannot tolerate. The worst has been that he developed blood clots in his lungs at Easter and is now on heparin.

[BrownBagger]

I've been living with lung mets for more than six years and nobody has ever told me I'm "terminal," though I suppose that's technically accurate, if you pay attention to the stats. That said, they do treat you differently when you're stage 4. I think everyone pretty much assumes you've had it, but that doesn't mean they stop trying to get you cured. And you shouldn't stop, either, IMO. My disease is currently stable, thanks to the heavy-duty chemo, which I handle pretty well and would be happy to continue taking for years, if it can keep the disease under control. Who knows when someone will come up with better treatments and procedures? That's my survival strategy, anyway.

[lori314]

Thank you everyone for the comments. Oncologist tells me I'm not a candidate for surgery because I have so many lesions. The CT report said at least 15 between each lung. Do a lot of Stage 4's folks continue to work? I'm not sure how my employer is going to react when I say I'm going to need chemo for the rest of my life. I am very concerned about my job and my health care insurance. Am I going to max out the benefits?

[BrownBagger]

I have a full-time job plus two steady freelance jobs and my insurance pays for pretty much everything and doesn't give me any grief about anything. Still, between the travel to NYC, copays and deductible, I'm about $5K out of pocket annually to take care of this disease.

I say work as long as you can, but you should consider applying for Social Security Disability benefits. You automatically qualify as a stage 4 CRC patient, but there is a waiting period to start receiving benefits (roughly half of your current annual income). And in two years, you can go on Medicare. So, bear that in mind as you plan. You also get a cash payout, but I'm not clear on how that's calculated. It's possible that it's equivalent to what you earned between the time you were dx and when you applied for the SSDI. In my case, six years in, that would be a pretty big check, so I'm not sure I've got that right. Big check or not, I enjoy working and plan to continue for as long as possible.

[midlifemom]

Lori,
Regarding maxxing out benefits, I believe obamacare/affordable care act put a stop to lifetime maximums. There might be some self insured plans or grandfathered plans that don't have to follow all the affordable care act regulations. You should be able to eadily find out if your plan has a lifetime max. You can simply ask your human resources department for a Summary of Plan Benefits or you might find it on company website.
Good luck.

[hart2hart]

Hi Lori -

Sorry to hear about the lung mets. How many? Have you read your reports? Have you had a PET scan?
So many on this forum have had lung mets that are Treatable! Try not to be Pessimistic. How much do you trust your DR?
You have options ----depending on how many mets (and size) you have. Has you Dr given you the options available?
You should really get a second opinion. Also, there are many treatments for lung mets. My hubby had two mets
removed 12/2014 via RFA followed by 5 months of chemo. He has had two clear scans - one upcomg tomorrow that
if clear would bring it to three.

I think first and foremost you need to get copies of all your reports ---seek out a second opinion and ask your current DR
what your options are --- -and Lori you have Options. Eric, Brownbagger has had quite a few of the available treatments,
is stable and doing well. Where do you live? Are you close to Sloan in NYC? Just curious? Great hospital/DRS -- which is where
my hubby is being treated and many more on this forum.


Julie and Pete
Stamford, CT

[lori314]

hart2hart, the CT scan report said "innumerable lesions." In a another paragraph of the report it said at least 15 lesions and also enlarged lymph nodes. My oncologist said that does not make me a candidate for surgery. I have read my reports and I have copies of everything. I am having a bronchoscopy and they will get a biopsy then. If it does come back as cancer, which my oncologist said he would be very surprised if it didn't because my CEA has tripled in 4 months to 11. I will also have a 2nd opinion at Ohio State. The options he said I have are to either have chemo or not. He said maybe 6 months without chemo and maybe 2 yrs with chemo. He said those 2 yrs would come at the expense of the side effects of the chemo and possibility of mets to other areas of my body. I'm not feeling too optimistic.

[Nik Colon]

To say someone is terminal because of mets is just WRONG! Yes, some are, but it depends on what can be done, if they can shrink enough to do surgery, etc. Please don't look at it as such, you never know.

[Maddielolo]

Not a lung expert but search on form for dr ladas (UK) or dr rolle (Germany); I believe they can laser up to 100 lung mets depending on location.