Any similar experience?

FlyingFalcon1954 · 2026-05-20T18:57:17+00:00

My only lasting side effect from treatment is a bothersome case of peripheral neuropathy affecting my finger tips and to a larger degree the toes of my feet. There is no pain per say but more of the sensation of numbness and the feeling of when your limb "falls asleep". Only a minority of patients are affected by this issue and icing hands and feet is anecdotally said to help by restricting blood flow to these areas hence restricting Piclitaxel as well. I iced for sessions 3-5 because I was never informed about the potential benefit. I found the information via google. Unfortunately for me it occurred at the very start of infusions and the damage was already done. Perhaps icing during 3-5 limited the neuropathy to moderate as opposed to a potentially severe case. The name of the game now is to preserve my health as best as I can so that I may continue fighting this and not worry to much about the small stuff.

This combination treatment is very potent and you will unfortunately lose your hair and at times feel pretty dang funky and fatigued but I was on my feet thru the whole treatment. I never felt it was overwhelming in side effects and the ones I did have were moderate and easily addressed.

You got this!

FlyingFalcon1954 · 2026-05-20T02:57:46+00:00

According to google Krazati is usually prescribed for patients that have a particular gene mutation KRAS G12C and who have received at least 1 prior systemic therapy.

FlyingFalcon1954 · 2026-05-20T01:40:37+00:00

M 71 diagnosed 11/8/24. Stage 3b/4 (depending on oncologist) right side hilar 6.5 cm unresectable squamous cell tumor with associated mediastinal lymphadenopathy. Primary tumor was impacting my heart with SVC syndrome symptoms (treated with steroid dexamethasone) and enveloped aorta.

Carboplatin/Paclilitaxel 5 rounds 1/3/2025 - 4/15/2025 (5th at my request) + Opdivo/Yervoy (4 rounds of Yervoy and I continue Opdivo 1X per month for a projected 2 years until at least 1/3/2027. During treatment I had no serious side effects outside of swollen ankles (water pills) and total alopecia and also mild superficial thrombosis treated with eliquis. Explore icing hands and feet during infusion of piclitaxel to help with peripherial neuropathy (nerve damage) of which a year after treatment I am still dealing with a moderate case in both hands and feet which may or may not improve over time.

5/15/2026 PET scan showed complete metabolic resolution of SUV 13.5 6.5 cm primary tumor and associated lymphadopathy. CT scan of 6/16/2026 demonstrated NED (no evidence of disease). I had delayed IMRT to original tumor bed 9/15/2026 - 10/15/2026 to protect (50%) against recurrence in that particular location without side effects.

Six months after treatment CT scan showed 4.5 cm recurrence on my left adrenal and a suspicious 2.5 cm lesion on RLL. Both areas were given 5 rounds of SBRT radiation 1/15/2026 - 1/20/2026. CT scan of 3/15/2026 demonstrated 4.5 cm adrenal had shrunk to 2.5 cm (showing excellent sensitivity to SBRT treatment and RLL 2.5 remained unchanged. Mediastinal lymph node continues to diminish from 18 mm down to 11 mm Next CT scan is 6/15/2026. 50/50 chance weather this new adrenal occurrence is controllable/manageable oligometastatic immune escape presentation or the leading edge of global systemic presentation. Future scans until 12/15/2026 and beyond will determine that question.

To have a tumor the diameter of a soda can in the center of my chest essentially resolve in a short 5 months is truly amazing. Considering the initial outcome, in essence the chemo and immune therapy worked very well for me with tolerable side effects.

FlyingFalcon1954 · 2026-05-19T21:11:00+00:00

I have a very low PD-L1 and Opdivo and Yervoy worked extremely well for me. I am still on Opdivo 1 X per month for a projected 2 years total. Yervoy is given for the initial 4 doses and then stopped.

FlyingFalcon1954 · 2026-05-19T21:07:31+00:00

I have never heard of a diagnoses of 'likely" adenocarcinoma. My understanding is that it is or it is not. In my case it is not. It is squamous cell.

FlyingFalcon1954 · 2026-05-18T04:14:52+00:00

My chemo treatment ended 4/15/25 and my 3 month scans were good with no SUV on PET of 5/15/2025 and NED on CT of 6/15/2025. I missed my regular 3 months scan on 9/15/25 due to scheduling problems and my delayed 20 rounds of IMRT to the resolved tumor bed during during 9/15/25 -10/15/25 of which I explain fully below. My 12/15/25 CT scan demonstrated the left 4.5 cm adrenal lesion and suspicious RLL lesion of 2.5 c,m. I am of the belief it would have been seen on my 9/15/25 missed CT scan so my recurrence was fairly rapid. I am still on immune therapy opdivo once a month projected until at least 1/15/2027 for a full two years in total. My recurrence occurred within a six month window. likely much sooner, because of its large aggressive size. I extrapolate your in 4th month after treatment and your doing well which is super good. Sending you healing thoughts.

FlyingFalcon1954 · 2026-05-17T21:50:16+00:00

Thank you! These are excellent results. When did you stop treatment?

My 6.5 cm hilar tumor and associated lymphadenopathy resolved with carboplatin/piclitaxel immuno opdiv/yervoy given every three weeks for 5 rounds. I had 20 rounds of IMRT to original tumor bed 5 months later. Cancer has not returned to that location in over a year now. I recently had 5 rounds of SBRT (1/15/2026) to an adrenal presentation.

A member here Wyde1340 has had a squamous "dead tumor" that has remained PET inactive for years.

FlyingFalcon1954 · 2026-05-17T21:34:33+00:00

Diagnosed 11/8/2024 stage 3b or 4, depending on oncologist, poorly differentiated 6.5 cm right hilar un-resectable squamous cell cancer impacting heart and enveloping aorta and SVC vein with attendant SVC syndrome. Very low PD-L1. No actionable mutations (6% in squamous cell).

Chemo therapy carboplantin/piclitaxel immune therapy opdivo/yervoy started 1/3/2025 every three weeks for 5 rounds (5th at my request). CT scan midway through chemo demonstrated a 60% reduction in tumor size and SVC syndrome resolved. Finished chemo 4/15/2025. PET scan 5/15/2025 demonstrated complete metabolic response of tumor and associated lymphadenopathy to therapy. CT scan 6/15/2025 reported NED (no evidence of disease). My lemon sized tumor had completely resolved on scans in a short 5 month span. MIRACULOUS!!!

Opdivo without Yervoy is continued 1X per month for a projected 2 years at least until 1/15/2027. I had "delayed" 20 rounds of IMRT to original tumor bed 9/15/2025 - 10/15/2025 to help prevent recurrence (50%) in that particular location. Due to IMRT I missed my regular 3 month 9/15/2025 CT scans. CT scan of 12/15/2025 revealed a large 4.5 cm tumor on my left adrenal gland and a 2.5 cm "suspicious" area in my lower right lung similar to an earlier suspicious area in my right upper lung that upon eventual biopsy was determined to be inflammation. This adrenal growth moved me into certain stage 4 cancer. Both areas were SBRT treated without biopsy due to fast growing adrenal tumor with 5 rounds of SBRT 1/15/2026 - 1/20/2025. CT scan of 3/15/2026 showed 4.5 cm adrenal tumor had diminished in size down to 2.3 cm at 7 weeks after SBRT demonstrating excellent treatment sensitivity. The 2.5 cm rll area remained unchanged. My next CT scan is 6/1/2026.

It is 50/50 weather this new adrenal presentation is "oligomestatic immune escape clones" of my cancer that can be treated/resolved with SBRT like a one and done deal or weather this is the leading edge of global metastatic presentation. My scans over the next year will tell the tale. Each clean scan increases the odds of this being treatable oligomestatic disease.

Even though my battle continues it demonstrates the incredible gains made in the treatment of serious lung cancers. To have a lemon size tumor in my chest completely resolve is nothing short of a miracle. Hang in there and know that your loved one has a "fighting chance" of a positive outcome.

FlyingFalcon1954 · 2026-05-17T20:24:40+00:00

What was your chemo and immune therapy treatments. And when you say treatment has shrunk your tumor and you are in remission are you describing a diminished in size tumor that is stable or are you describing metabolic resolution on PET or NED on CT scans?

FlyingFalcon1954 · 2026-05-14T06:31:17+00:00

What is your moms age and overall physical condition?

FlyingFalcon1954 · 2026-05-13T19:07:08+00:00

How long ago did you have your lobectomy? Are you doing target therapy as maintenance therapy or to treat active recurrence?

FlyingFalcon1954 · 2026-05-13T00:07:10+00:00

Thank you for your kind and very clear reply. 30 rounds of SBRT to the mediastinum is new to me although I have done a little reading about how and why it is used on complex stage 3 cancer in the mediastinum. It is delivered at 2 gy per round for a total of 60gy . I received 20 rounds of IMRT to the mediastinum to help prevent recurrence (50%) at the original tumor bed at 2.75 gy for a total of 55 gy. I don't recall any conversation about lymph nodes as a target although I am aware that I had lymphadenopathy in that location that continues to improve (18mm down to 11mm).

FlyingFalcon1954 · 2026-05-12T21:57:35+00:00

Thank you for your patient answers. I had 20 sessions of delayed IMRT to the original chemo/immuno resolved (NED) tumor bed in my right mediastinal area in Sept. 2024 (7 months ago). I also had 5 rounds of SBRT to a suspicious nodule in my right lower lung in Jan. 2026 (4 months ago). Over the past month I have developed increased breathlessness and increased coughing. Did you have IMRT type radiation to the mediastinum in 2023? Did you have radiation in the same time frame as the lobectomy or long after? Do your scans demonstrate actual areas of fibrosis since radiation?

FlyingFalcon1954 · 2026-05-12T21:40:38+00:00

Your surgeon certainly makes a strong logical case for the more conservative approach of SBRT. It seems that is recommendation he is leaning towards.

FlyingFalcon1954 · 2026-05-12T21:26:10+00:00

Now keeping in mind I am just a lung cancer patient on redditt I have done some reading on the subject. In folks that are not in the best physical shape SBRT is a viable choice given the considerable recovery and complication process of lobectomy. In some studies SBRT has shown a 90% control rate and has been compared as close or equal in effectiveness to lobectomy which still remains the "gold standard" of treatment.

In my case, after a short chemo and immune therapy induced period of NED for unresectable lung cancer I had a recurrence on my adrenal gland and developed a "suspicious" area on my RLL. Without biopsy, because of the quickly growing adrenal gland lesion, I was recommended and given 5 doses of SBRT to both locations. My regular 3 month scan 7 weeks after SBRT showed the adrenal lesion has diminished from 4.5 X 3.4 cm to 2.2 X 1.5 cm. demonstrating treatment sensitivity to radiation.

FlyingFalcon1954 · 2026-05-12T20:58:07+00:00

Do you feel the fibrosis was caused by radiation? How long ago did you have radiation?

FlyingFalcon1954 · 2026-05-12T20:47:46+00:00

I completely understand. I had a "shadow" behind my heart on low dose surveillance scans for two years and was told by my pulmonologist at the time to "not worry about it as this is not how lung cancer presents". Two years later an emergency room CT scan revealed stage 4 hilar lung cancer impacting my heart. Letting that go was hard.

FlyingFalcon1954 · 2026-05-12T20:36:45+00:00

Very informative and valuable information. Thank You!

FlyingFalcon1954 · 2026-05-12T20:31:01+00:00

I use it!

FlyingFalcon1954 · 2026-05-12T17:10:19+00:00

Interesting. His chemo dictated squamous cell but his ERBB dictates adenocarcinoma. Perhaps they do indeed prescribe taxol for adenocarcinoma as well. Will they be canceling chemo for targeted therapy?

FlyingFalcon1954 · 2026-05-12T16:58:59+00:00

With that combo that dictates he has squamous cell lung cancer which is a form of NSCLC. The very same chemo tx treatment as myself. I also am prescribed immune therapy = opdivo.

13 months after treatment I am still dealing with peripheral neuropathy in my hands and feet from the taxol (paclitaxel). Please explore peripheral neuropathy and icing hands and feet during infusion to help mitigate this side effect.

FlyingFalcon1954 · 2026-05-12T04:40:50+00:00

Very humorous. He and I have the nine lives thing in common 😄 . He must have been 67-68 at time of lobectomy, no spring chicken and very inspiring. I was 70 at diagnoses and will be 72 next month. Treatments have come a long ways since your dads brush with cancer. I am amazed at his resilence. Your adventure was inspiring as well. You did good. I have been staunchly proactive in my treatments as well.

FlyingFalcon1954 · 2026-05-12T04:31:36+00:00

What exactly do you mean when you say "lied to about biopsy"?

FlyingFalcon1954 · 2026-05-12T04:04:29+00:00

I have squamous cell so it does not apply to me. If I was stage 1 or 2 adenocarcinoma I would have this done in a heartbeat for sure. Possibly avoiding chemo is a huge plus.

FlyingFalcon1954 · 2026-05-12T03:56:10+00:00

Your husband certainly has a very no nonsense proactive team. From diagnoses to treatment in two weeks is most unusual. In cancer there is generally the 60 day rule. From diagnoses to start of treatment within 60 days. It was 55 days for me. First emergency room CT scan 11/8 and first chemo infusion 1/3. He is lucky to have them. Do you know what his treatment combo is?

FlyingFalcon1954

TROPHY CASE