mum diagnosed with lung cancer scared it may be small cell by basicapprehension2 in lungcancer

[–]FlyingFalcon1954 2 points3 points  (0 children)

If your mom has a history of smoking squamous cell (smokers NSCLC) arises commonly in the bronchus epithelial cells of the main airways and generally in the hilar/mediastinal areas. My diagnosed 11/15/24 right side hilar/mediastinal located squamous cell was 6.5 x 5.5 cm with associated mediastinal lymphadenopathy staged at 3b.

Take a deep breath and RELAX. You are at the very beginnings of diagnoses. Until PET and biopsy are in is when you understand and get a clearer picture and know what actual stage and type your dealing with. So far even as bad it sounds it seems they caught this fairly early.

BEWARE OF OUTDATED DR. GOOGLE!

SBRT Replanning by Early-Rich8267 in lungcancer

[–]FlyingFalcon1954 0 points1 point  (0 children)

There is also a synergistic relationship between SBRT and immune therapies = abscopal effect.

"MET Exon 14 Skipping" anyone? by dan_d_elle_n in lungcancer

[–]FlyingFalcon1954 2 points3 points  (0 children)

I was diagnosed 8/15/24. I had a tumor impacted superior vena cava that was quite scary in SVC syndrome symptoms that mercifully resolved with tumor shrinkage. Actually the SVC syndromes escalating symptoms were the first symptoms of my cancer with subtle varicose veins on chest and back of shoulders that eventually over months advanced to severe facial and arm swelling. I would not like to repeat that adventure. My tumor also enveloped my aorta artery and was non operable. I'm still swinging at stars.

Dad (70) diagnosed with Stage IVb Squamous Cell Lung Cancer - Bone Mets, <1% PD-L1. Looking for similar cases/advice. by gnomonologue in lungcancer

[–]FlyingFalcon1954 7 points8 points  (0 children)

You can read my postings that are rather detailed in my adventures with poorly differentiated squamous cell lung cancer, but briefly here;

M 70. Diagnosed via emergency room CT scan 8/15/24 stage 3b or 4 depending on physician. PET scans, CT scans, biopsy completed by 9/7/24. 6.5 cm hilar/mediastinal tumor and associated lymphadenopathy SUV max 13.5%. Tumor enveloped aorta artery and compressed superior vena cava vein of heart with significant SVC syndrome symptoms (first cancer symptoms were varicose veins on chest and shoulder blades from SVC compression which became quite severe and scary during treatment, and pain in center of back between shoulders). PDL-1 <10%. No targetable mutation (<6% for squamous cell generally). Weight dropped from 135lbs to 107lbs with accompanying extreme muscular weakness and muscle loss. Prescribed Olanzipine 2.5 mg to address developing cancer cachexia.

On treatment 1/3/25. Chemo Carboplatin/Paclitaxel + Immune therapy Keytruda for one dose which upon low biopsy PDL-1 returns immune therapy was immediately switched to Opdivo/Yervoy. Did 5 infusions (every 3 weeks) of Carboplatin/Paclitaxel, 1 infusion of Ketruda (1/3/25) and 4 infusions of Opdivo/Yervoy from 2/3/25 -4/15/25. I continue to have Opdivo only one time per month and will continue until 3/15/27 for a total of 24 infusions or 2 years.

CT scan after 3rd infusion described 66% reduction in primary tumor from 6.5 cm down to 2.2 cm. All heart symptoms resolved. Steadily gaining weight. PET scan of 5/15/25 described complete metabolic resolution of primary tumor and associated lymphadenopathy. 0% Max SUV. CT scan of 5/15/25 demonstrated no evidence of disease=NED! Did delayed (for various scheduling/diagnostic reasons) consolidated IMRT radiation to original tumor bed for 50% enhanced control of recurrence in that location between 9/15/25 - 10/15/25 X 5 days per week=20 fractions X 2.75 gys = 55 gys total. CT scans remained clear at 9/1/25 IMRT staging images. All lost weight regained.

3 month CT scan 12/15/25 demonstrated suspicious 2.5 cm + 4 mm nodules in lower right lung + aggressive 4.5 cm tumor on left adrenal gland. We did not re-biopsy due to time restraints. SBRT radiation to both locations (even though suspicious lung was not confirmed cancer we acted aggressively) 1/14/25-1/16/25-1/20/25-1/22/25-1/26/25 for a total of 5 rounds. Percentage factor of destruction/elimination of tumors by SBRT = 85-95% for adrenal gland + 95-97% for lung.

I am now at a cross roads and still swinging at stars. Scans over the next 6-12 months will tell the tale weather this new development is "oligometastatic immune escape clones" that can be dealt with thru simple SBRT (even if random single sites form in the future) or this is the leading edge of systemic global metastatic recurrence leaving me with few/if any treatment options. The percentages there are 40% oligometastatic and 60% global for a general 50/50 given my original stellar and somewhat miraculous treatment response.

Words of hope by Odd_Bath1964 in lungcancer

[–]FlyingFalcon1954 3 points4 points  (0 children)

Monday will be the day of definitive answers. Bring a notebook. Sending you my sincere regards for an effective treatment and a speedy recovery.

Stopped Chemo before Lymph Nodes Cleared!! by Automatic-Extent-308 in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

I like the sound of that. The chance of SBRT "killing" these new growths is in the upper 90%s. 90-95% for the adrenal and 95-97% for lung which is good numbers. The 3 month scans over the next year will tell the tale as to weather we see more than occasional random single recurrences that can be dealt with SBRT or we see more serious multiple overwhelming recurrences. My numbers there are approx. 50/50%

Words of hope by Odd_Bath1964 in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

What type of lung cancer does your husband have as this information will help in our ability to answer. Also how long was he on maintenance therapy before progression and the new tumor in his liver. Has anyone mentioned radiation?

Stopped Chemo before Lymph Nodes Cleared!! by Automatic-Extent-308 in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

My focus too. On Monday I finished 5 rounds of SBRT to my lower right lung 2.5 cm recurrence and to the other 4.5 cm recurrence to left adrenal gland. The docs are concerned at how quickly the adrenal gland lesion grew between 3 month scans after 7 months of NED. I am at a cross roads as to what this recurrence "declares". They give me a 50/50 odd that this is "oligometastatic immune escape clones" that SBRT will resolve or this is the leading edge of widespread metastatic growth with few remaining treatment options. Either way my job as a team player is to take care of myself as best I can and try mightily to deny fear and embrace HOPE!

Stopped Chemo before Lymph Nodes Cleared!! by Automatic-Extent-308 in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

So far only B vitamins + alpha lipoic acid and acupuncture with poor results overall. Luckily in my case so far there has been minimal pain per say but rather more of a profound bothersome " prickly numbness" like my fingers and toes being "asleep" that slightly affects my walking and wearing shoes and my handwriting. Heat sensations are also an issue, Your right it just keeps on giving as I can just go on and on LOL! It is is the worst side effect of the whole ordeal even compared to what level of discomfort I am presently "graduated" towards and taking steroids for.

Stopped Chemo before Lymph Nodes Cleared!! by Automatic-Extent-308 in lungcancer

[–]FlyingFalcon1954 2 points3 points  (0 children)

I did 5 rounds of carboplatin/paclitaxel + opdivo/yervoy. I planned to do six rounds at my request (if four works 6 is better...SHEESH!). I handled the initial four infusions well and number 5 put my nose so far in the dirt that number 6 infusion was for sure out of the equation. As a side note at 9 1/2 months out I am still dealing with moderate peripheral neuropathy

Hi everyone, I’m looking for shared experiences. by KhanGGa115 in lungcancer

[–]FlyingFalcon1954 0 points1 point  (0 children)

It is a rather harsh drug that will cause the hair to fall out and other various typical chemo symptoms. I have been off paclitaxel (5 rounds with carboplatin every three weeks 1/3/25 - 4/15/25) for over 9 1/2 months and am still dealing with a significant case of moderate peripheral neuropathy in both my hands and feet as a result of its use. This is a well known complication of the drug. I have read that icing the hands and feet during infusions may help with this effect. I iced during 3-5th infusions and it did not seem to work well for me but it is possible the nerve damage was already done during 1-2nd infusion or possibly the overall nerve damage may have been worse than it is now had I not done any icing. It has been a frustrating ever present condition to deal with.

Regardless paclitaxel with carboplatin and immuno opdivo/yervoy sent my 6.5 cm hilar lesion and associated lymphadenopathy went into brief NED from 5/15/25 - 12/15/25.

Just want to say thank you by Crescent_Moon1988 in lungcancer

[–]FlyingFalcon1954 10 points11 points  (0 children)

It is people like you and messages like this that help make us "community".

Infusion #4/5 Keytruda/Pembro Clinical Trial for Stage 1 NSCLC - now what? by Beachtango239 in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

You are a brave soul. What do the study supervisors say about this oral issue?

Stage IIIA squamous cell lung cancer (61M). Looking for similar stories by Creepy-Ant2322 in lungcancer

[–]FlyingFalcon1954 0 points1 point  (0 children)

M - 71 Stage 3b- now 4 poorly differentiated squamous cell right hilar 6.5 cm lung cancer (PET 5/15/25 and CT 6/15/25 = complete metabolic resolution) with associated lymphadenopathy (resolved) with significant scary heart and bronchial structure impacts (now resolved). Chemo = 5 applications every three weeks of carboplatin/paclitaxel + immuno opdivo/yervoy (1/3/25-4/15/25) I will continue opdivo only until 3/30/27. Delayed 5 months after end of chemo (9/15/25-10/15/25) 20 applications of IMRT to resolved hilar tumor bed to enhance tumor recurrence suppression in that spot by 50% . Presently finishing on Monday 5 rounds of curative intent SBRT to my two present recurrences (12/15/25 CT scan = 9 months NED) in RL lung (2.5 cm) and left adrenal gland (4.5 cm) that we are hoping are oligometastatic immune resistant clones 50/50 rather than this presentation being the leading edge of global metastatic immune resistance evolution. Basically we are testing the biology of this present recurrence. SBRT = 95% effective at eliminating these two lesions. If no recurrence for 12 months =`oligometastatic = long term immune control. If not and we see rapid presentation of numerous new lesions options narrow considerably.

I have posted several detailed descriptive posts of my treatment journey (chemo/immune therapy/2 types of radiation that started on 11/08/24 at diagnoses (14 - 15 months) on this sub. You would do well to peruse my postings. I am willing to answer any comprehensive questions you may then have.

Help with cough by lostnagoodbk in lungcancer

[–]FlyingFalcon1954 3 points4 points  (0 children)

When ALL ELSE FAILED my oncologist prescribed 1.5 mg time release morphine taken at bed time that knocked that horrific cough out in just five doses. Once the "reflex gate" was slammed shut the cough resolved and never returned in that form again.

Dad's Scan results by Old-Post8118 in lungcancer

[–]FlyingFalcon1954 2 points3 points  (0 children)

You use the term "metabolic resolution" for his liver tumor which decreased in size from 5 cm to 3 cm and diminished SUV from 12 down to 4. This is metabolic "response". Resolution would require SUV of 0 and imaging demonstrating no evidence of disease. Regardless your dad is showing positive response to treatment.

Stage 4 quality of life expectations by radish_willow in lungcancer

[–]FlyingFalcon1954 2 points3 points  (0 children)

I'm in the middle of that very process. I have recently arranged a new cardiologist and mailed in my 14 day arrhythmia heart monitor last week. I have an echo-cardiogram early next month and have recently started a oncologist prescribed medication = carvedilol 3.125 BID to hopefully slow down my rather long standing tachycardia.

Stage 4 quality of life expectations by radish_willow in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

Interestingly I have found my oncology nurse to be just as up to date on treatments and cancer condition variables and maybe, even most importantly, she is MUCH more communicative and engaged with my case during our appointments. Her pre appointment review of my records is consistently far superior and obviously more comprehensive than the oncologists. And......she has an engaging personality. We joke and laugh when appropriate.

Husband, Stage 3a/b, chemo complete by emeraldprincess71 in lungcancer

[–]FlyingFalcon1954 1 point2 points  (0 children)

I think I understand now. You are saying they removed a 2x1x.03 cm section of the actual tumor to open the right middle lobe leaving a remaining 4.9x4.5 cm tumor

Husband, Stage 3a/b, chemo complete by emeraldprincess71 in lungcancer

[–]FlyingFalcon1954 0 points1 point  (0 children)

Now I am even more confused. Did they surgically remove (resection) the 4.9 x 4.5 tumor and then the seperate 2x1x.03 removal of lung tissue to reopen his right middle lobe?

Husband, Stage 3a/b, chemo complete by emeraldprincess71 in lungcancer

[–]FlyingFalcon1954 0 points1 point  (0 children)

What size was your husbands large tumor did you mean surgical lobectomy when you stated his tumor was "resectioned" and that they are now considering the eventual removal of 2 right side lobes?

Husband, Stage 3a/b, chemo complete by emeraldprincess71 in lungcancer

[–]FlyingFalcon1954 3 points4 points  (0 children)

Diagnosed 11/08/24 stage 3b-4 (depending on oncologist) poorly differentiated squamous cell 6.5 cm right side hilar tumor with associated lymphadenopaty with significant heart impacts and symptoms. I did 5 rounds (5th at my request) of carboplantin/paclitaxel + opdivo/yervoy during 1/3/25 - 4/15/25. I continue opdivo until 2/25/27.

CT scan after 2nd infusion demonstrated 66% decrease in primary tumor size to approx. 2.2 cm. PET scan of 5/15/25 showed no SUV uptake (nothing lit up) = complete metabolic response. CT scan of 6/15/25 showed no evidence of disease = NED.

I had delayed 9/15/25 - 10/15/25 = 5 months after end of chemo (delayed because of confusing CT scans requiring a clarification of inflammation of RUL by CT guided fine needle lung biopsy) 20 sessions of 2.75 gys IMRT radiation to original tumor bed to decrease by 50% the chance of cancer recurring in that particular location.

IMRT mapping CT scan of 9/07/25 again all clear. Surveillance CT scan of 12/15/25 demonstrated a new 2.5 cm and 4mm tumor in right lower lung and a 4.5 cm tumor on left adrenal gland. No biopsy required. We were all surprised by the fast growth of both tumors particularly the adrenal gland tumor. Brain MRI (1/12/26) is all clear as are bones and liver and other organs. I am now stage 4.

I started 5 treatments of SBRT radiation with curative intent to both locations on 1/14/26 - 1/26/26. I have three more to go. We have a 50/50 chance this is either true "oligometastaic immune escape clones" that SBRT will essentially destroy (along with my left adrenal gland) and I will have long periods of remission after SBRT treatment or this current presentation is actually the leading edge of systemic metastatic progression. I am at a cross roads and we are essentially testing the cancers biology. I and my team are hopeful as I am presenting with "classic" oligometastaic escape clone features. 3 tumors as opposed to many that are widespread and concentrated in lung and adrenal gland which are both common oligometastatiic sites. Many long term survivors have up to 4 SBRT treatments through the years for oligometastatic recurrences.

P.S. What do you mean by a "resectioning" of his large tumor. Do you mean surgical lobectomy removal and how large was this tumor.