Living with lung cancer - Introduce yourself & come say hi

Not sure if stressful just mind-blowing in way - its been a very rough 2 years - his dad was not making red blood cells and died June 28 - then his mother who was in nursing home going on her 15th year died on Dec. 26th... was hoping things was settling down for while... need to get some tohings accomplished around here but all plans have flew out the window for that today...

Back from Indy... course of treatment in progress of changing...

The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing… as of yet - the Dr. is satisfied with what the Pemnrolizumab (Keruda) is accomplishing there

The question is why has it not phased the Supraclavicular lymph node - it had been shrinking but done a complete about face.

BUT the Supraclavicular lymph node is still acting up it is near the jugular vein too & increasing in size along with some near it So once again in less than 2 months (6 weeks) kicks him out of the clinical study

he did not receive the Chemo (Docetaxel) today because of the continued growth of the Supraclavicular lymph node

Dr. is keeping him on the Pemnrolizumab (Keruda) but the clinical study will not pick up the cost of the drug had to get
pre-approved through his insurance for that Dr. wants to keep him on that with because of the good its doing for the main tumor and lymph nodes within the chest cavity. time will tell how long insurance will pay for it 🙁

Take him back to see radiologist this Monday at 2:30 p.m. and then for another biopsy for end of clinical and for Precision Genomics to help find other studies and a plan for further treatment. All else fails I guess it will be surgery

The radiation an be one mega doe or a series and can be 1-14+ days which will mean daily trips to Indy (200 miles round trip) if can hack it they are looking into helping finding lodging where I can take the dog and cat in a cage with us there is one they says is pay what you can afford. If all else fails I guess I will have to board them- pay for motel room/ eats and gas and lock up the house for the duration -

The next Pemnrolizumab (Keruda) is scheduled for the 29th of April but has to be a spacing between the last radiation treatment and it ...

Not sure if I am making any sense of not but it was a lot to adsorb today - but they do talk, explain, listen and go the extra mile.

Update - Hopefully winter is behind us but Easter is not passed as yet here in Indiana it can snow up a storm on that day.... - to be 56-70's today.

I am head to Indy with friend in about 2 hours - he had ct-scan on Thursday at Indy and this is to be his dr/chemo/immunology - not sure what is going to be going down - got e-mail of tentative results and it said the Game plan has again changed after only 6 weeks -

On Feb. 25 they add chemo back - Docetaxel but it must not be working as they had hoped..

He has had no bad side effects from it other than sleeping a a lot, some hair loss and his taste for foods are off; have noticed a lot of irritability he yells more at the dog barking and yells at him to "shut up"

He's had a muffled cough almost constantly too. BUT he still rides his bike down to the country store 10+ miles one way - has missed a day or two - generally the days of the dr/chemo/infusion when we roll into home aft 7-8 p.m.; last Thursday - when we got home from ct he oped not to go as was indy and on chilly side and said he did not feel like it.

Not sure what's goign on but will know something sometime after 12 noon our time But what ever will have to manage and carry on.

Friend has started his 2nd clinical study and had his first treatment of Chemo (Docetaxel) combined with the Pemnrolizumab (Keruda) (which he has been on since Dec. 2017 every three weeks) plus a dose of steroid to ward off and of the side effects

The 1st clinical study was: Pemnrolizumab (Keruda))/Carboplatin/Abraxane week1 and then Abraxane week 2 &3 for total of 12 weeks Dec-Apr and then in April was only the Pemnrolizumab (Keruda) every 3 weeks - like said he had little no side effects - - thus far he has no side effects to the new chemo hoping he will do same as he did on the 12 week regimen not sure how long this will continue - will be depending upon if any side effects the drug as is a little more wicked than the other 2 and will be taken off if it causes other complications.

The Supraclavicular lymph node shows measures partially necrotic ( death of cells) 4.6 by 6.1 cm; there are 3 others 1 morphologically 1.1 cm.; 1 partially necrotic ( death of cells) at 1.6 cm. and the other necrotic at 1.1 cm He had his biopsy of the Supraclavicular lymph node for the clincial study its basiccally for their study purposes unless it turns something more up that what is now known
on Thursday 21st and goes back for treatment on March 18th and scans on April 4th and treatment again on April 8th.

Options if this does not work or show progress is first radiation, and then possibly surgery if the radiation does not work.

The main tumor/mass and all the chest lymph nodes and the Left Axillary lymph nodes have shrank not changed and have remained stable. the upper lung mass has been described as "fungating" in the CT scans

He is Stage IVB NSCLC into his second year being diagnosed in Oct 2017

Its been a very rough 2 years on all of us his father died Jun 28 2018 after a near 2+ year battle onf not making read blood cells, & his mother on Dec. 26th 2018 after being in nursing home for 14 years from full right side stroke - he has a massive Acute MI near 100% blockage with many other health issues was "comfort care" for 8 days before dying I stayed with her 24/7 tho he never has said I know their deaths has taken a toll on him.

There has been never given a time frame of survival given only what I have researched.... he is determine and rides his bicycle almost every day 10+ miles one way to a country store to have coffee be with local people.

He has not had any colds, flu etc. which is a plus... God is good and he will take care and provide what is needed...

@colleenyoung Thank you! Will see my oncologist and will ask him about the difference between these two as well as his experience with Aden carcinomas occurring with them. My PCP just called to reassure me. She did not want me worrying until seeing the oncologist. She talks with oncologist and he said that these tumorlets are often found when surgery is don't to remove another cancerous nodule and he is not concerned about it. He thinks there is no follow up treatment regarding the tumorlet and he will discuss this with me in detail when I see him a week from this coming Tuesday. My previous PCP retired and I really lucked out with this PCP--she truly cares about one's emotional and physical well-being. Certainly will keep you posted as I find out more. In the meantime, will be reading these posts. I look forward to reading these papers that you and flusshund supplied.

@flusshund Thank you fro that encouraging information. That is the most information I've heard about the aneroid tumor lets. I am glad they got it along with the other one when both were so small. That is good advice from your psychiatrist friend from whom you got support. It is often easier said than done! I will be working on it however. I think it is wise to be open about our cancer--don't mean buttonhole people and regale them with our stories, but not shy away from talking about our cancer if it is appropriate. I am learning also to do this. At first I felt like it was a dirty secret--like in the Biblical days of being a leper. Thank you for your payers. I will be praying for you as well. Have taken this day off to rest and just be. It feels good. Remember a disc jokey who always opened his show with "Let us thank the Lord fro he has given us another day." That was years ago, but it is still a good way to approach each day.

I found multiple published articles by NIH and the American Cancer Society. The most recent NIH article was published in 2017 and is the most promising, stating that "Pulmonary carcinoid tumorlets are rare, benign lesions". In the papers spanning the previous 10 years, there is more uncertainty, generally concluding sometimes they develop into tumors but most times they remain small. By definition, a tumorlet is defined by size - less than 0.5 cm or 5 mm in diameter. Overall, nothing to worry about and you should focus on being happy the tumor is gone!

I was pretty open about my cancer, so when I sent to my 40th high school reunion last year, most of the guys already knew. (I attended an all male, Jesuit high school.) I heard a lot of stories about guys that had gone through pancreatic cancer. But most relevant to this thread is the one friend who pulled me aside and confided that he has survived 3 types of cancer and currently has one that will eventually kill him. By profession, he is a Psychiatrist who has worked with numerous cancer patients prior to and during his own experiences. He kept in touch after the reunion and helped me as I was going through chemo and radiation. The most important lesson he shared with me was "You have to give yourself permission to rest." I've found this to be good advice.

Keeping you in my prayers.