Stage 4 adenocarcinom

[Marian54]

My husband was diagnosed with adenocarcinoma stage 4 nsc lung cancer poorly differentiated. He had a liquid biopsy and dna sequencing done and was started on 2 chemo drugs and immunotherapy (kaytruda). He also has a plural effusion and the lung is collapsed. We were told that the tumors were massive and that it was also in the lining of his lung as well as all the lymph nodes tested. We were told he was not a candidate for surgery or radiation but were not told why. We also were never told why it is stage 4. His other lung is clear as was his brain mri. Does anyone know why a lobectomy is out and what makes it a stage 4?

[FtB_Peggy]

Marian,

Thank you for reaching out to our community. You will get plenty of wonderful feedback here.

Stage 4 means someone has pleural effusion and/or metastasis. Surgery is rarely done at this stage. If you live in the US or Canada, I would be very happy to send you our free information on living with a diagnosis of lung cancer and immunotherapy and resources to help you - just send me your name and address: [e-mail] and I can get that out to you today. If you live outside of the US, let me know, there are still some resources I can share.

Please don't be shy about talking with your husband's oncologist and getting the answers you need. Also, remember to report any symptoms or side effects your husband experiences ASAP. Did they set him up with palliative care? The palliative team is there just to help take care of any side effects or sypmtoms, to make treatments more manageable. To learn more, please see: cancer.gov/about-cancer/adv....

For some general information on treatments: freetobreathe.org/lung-canc....

I look forward to hearing from you.

Peggy

[SusieJo1948]

welcome this is a bad way to meet,there is so many new treatments surely their is something they can do. i had stage3 no radiation just 6 months of chemo i thought i was going to pass everyone thought that. buyears

[SusieJo1948]

marian mine didn,t get that far. i had stage3 they didn,t think i would live,but here i am 5 years cancer free i,m a survior. believe and have hope and tell him to fight and don,t give up. i truly beleive in miracles i am one i hope and pray that he will be too. this is scaring you and him. if you need to talk or rant,cry. i,m here and so are the others there a good bunch. we,ll all be there for you. love susiejo1948.

[Ncpoet]

Marian, I was diagnosed with stage 4 nsc adenocarcinoma in 2013. I was going to have a lobectomy, but when surgeon went in, he saw it had spread to outside lung, chest wall and lymph node. Because of where it had spread he did not think a lobectomy would be beneficial for me. My oncologist did not suggest radiation. He felt we needed to get started on chemo. When genetic testing came back, I was able to stop chemo, carboplatin and Alimta, and do Xalkori. When side effect became impossible for me, switched to Zykadia. They both affected QT wave in my heart. So then I switched back to one chemo, Alimta. Been in remission since 2016. So, each person’s cancer is not always the same and the doctor has to figure out the right treatment that would be most successful for that individual patient. Not all treatments are necessary. Staging is determined by how much the cancer has spread and where it has spread.

I will be thinking of you and your husband.

All the best,

Judy

[Marian54 in reply to Ncpoet]

Your experience sounds similar to my husbands as they said the cancer was in the lining of his lung as well as the lymph nodes. They never said it was outside his lung but my husband doesn’t ask a lot of questions so that may be why a lobectomy would be out of the question. The fluid that they drained from his plural effusion was cancer free however the tumors were cancerous.He also is on carboplatin and Altima as well as immunotherapy Kaytruda.He just finished his first round and has a pet scan scheduled next week. My husband has tolerated this first round pretty good. The oncologist made the mistake of telling him that he had a patient who only needed one round. Now my husband is hoping that this will be the case with him too.

Thank you so much for your response and encouragement. The people on this site are wonderful, supportive people.

[Ncpoet in reply to Marian54]

I had two rounds of Carboplatin and Alimta. Then did a year with the targeted therapy drugs which were pills I took at home. Then back on Alimta every three weeks for the following year. Again, everyone’s treatment is different. We all hope for less treatment time but shouldn’t get discouraged if our treatment lasts longer than someone else’s. I know nothing about Keytruda and how it works in combination with the chemo. It helps to think of questions and write them down to take with you to appointments. I hope you are able to go with him. My husband helped me by also asking questions and being an extra set of ears. Too much information at once could play havoc with my memory.

All the best to both of you!

Judy

[MarianK in reply to Marian54]

After my husbands first round they had him continue to do one more round with just the Keytruda. After the pet scan following they said he can discontinue everything for three months and then have a ct scan. When I read the actual pet scan report I was surprised that they stopped tx as it noted new areas that were hyper metabolic suv 4.5.He has been feeling pretty good and is very hopeful , I’m the one who is worried that his treatment should be more aggressive. Unfortunately my husband still doesn’t ask many questions (ignorance is bliss) but I still want to know what to expect.

Does anyone know what SUV stands for? THANKS IN ADVANCE.

[June2081 in reply to Ncpoet]

Just if it spread to the chest wall how are you in remission? Are you not getting any treatments?

[Ncpoet in reply to June2081]

My CT scans in 2016 showed no cancer. I was on Alimta for maintenance but had to stop as I was starting to get worse side effects. Still got scans every three months and now it is every four months.So last three years scans still show no cancer.

Judy

[June2081 in reply to Ncpoet]

Judy that’s pretty amazing, did you have any cancer in the pleura? God bless and keep going strong!

[Ncpoet in reply to June2081]

My cancer was inside the lung, on the outside of the lung, the chest wall and lymph node.

[June2081 in reply to Ncpoet]

Thanks for the info, my cancer went from stage 1 to stage IV when it spread to the pleura. I was told inoperable, incurable, and terminal, although that was 5 years ago.

June

[Ncpoet in reply to June2081]

Mine was inoperable and given eight months to live in 2013. So there is hope!

[ElmerFudd314]

Can't ad any more to the above replies except you might want to read my previous posts for practical ideas of how to manage chemo side effects. Just finished a full 6 course chemo regimen yesterday and feel good. Now the doc wants to do maintenance chemo every 3 weeks with just pemetrexed. Eventually he thinks he will ad opdivo. Good luck and private message me if you like. I'm up here in MN and the snow is finally melting !

[JeanE41]

Welcome Marian54. My first reaction when I heard those words you have lung cancer was get this thing out of me, but that is sometimes not the best solution. When the cancer has spread, using the variety of drugs out there to control, shrink and possibly kill those cancer cells is the way to go. It sounds as though your oncologist is using this approach. Remember there are many new treatment options out there that were not available when I was diagnosed in 2015 and many new approaches being developed all the time.

You, as the caregiver, have the hardest job, so take care of yourself. I believe that my daughter's had a more difficult journey seeing me through this process than I did. Don't be afraid to ask questions until you understand what is said. Some doctors forget that most people do not understand medical terminology. If your husband develops side effects from his treatment, contact the medical team for help. Side effects can be managed.

I hope you continue to contact us. Someone here has most likely experienced whatever is happening in your husband's journey and will share suggestions. We are a very diverse group, but very supportive of each other.

Jean

[Marian54 in reply to JeanE41]

Thanks so much Jean. I really appreciate your support.

[Denzie Moderator Volunteer]

As the others said staging is based on the size, location and aggressiveness of the tumors.

When it has moved into the other lung, lining and the lymphatic system outside of the thorax it became stage 4.

The best way anyone ever explained why surgery is not done on stage 4 patients is this way. Envision a dandelion, a tumor that has not spread is a lot like the dandelion when it is in its flower stage. You can control the flower, you can move it in one piece. When the yellow petals turn to fluff and are carried away on a breeze you have no control over wher the bits of fluff will land and a new dandelion take root.

CT and PET scans are useful only when a tumor reaches a certain size. Until that time they cannot be detected.

[Surviventhrive]

Hi Marian54. My lung cancer is stage IV too ... and as a result, I also was not eligible for radiation or surgery. But, please don't feel like there are no options. In today's world, there are many options, with more being found every day.

Please be sure that your husband's tumor is tested for genetic mutations, including the PDL1 burden. It is possible that there will be targeted therapies or immunotherapies for which he will be eligible.

I suggest that you download the NCCN guide for lung cancer. It not only gives you questions to ask your doctor and information about current treatments, it also lgives you definitions for words and acronyms that may be new to you. nccn.org/patients/guideline...

Best of luck and please let us know how your husband is doing!

[Marian54]

My husband completed his first round of Chemo drugs and Kaytruda last month and had a pet scan Thursday. They say he is cancer free. I am having a hard time believing it. He was diagnosed 1 /23/18 with stage 4 nsclc so that means he was cured in less than 4 months. People we have told are also in disbelief. I also just found out that his biopsy that was sent out to Caris labs for dna sequencing was never done as the sample sent was to small. I asked every month for the results and got the runaround until this month when a nurse responded to my email and stated that was why she had trouble finding it. The doctor had told us about targeted therapy based on what mutations existed so how did they come up with a plan if they didn’t have the dna results.

Believe me, I am thrilled and so very greatful, but based on everything I’ve read this just seems so very unlikely.

They want him to do four more Kaytruda infusions but have stopped the Altima and carboplatin.

PLEASE don’t think I’m an ungrateful btch it’s just that we have never had luck like this before and we are having a hard time believing our luck has changed and all our prayers have been answered.

Thanks for the support you have given me this past two ,months . I am praying for you all.