Hello fellow Stage 4 SCLC members

[jack14]

Hi everyone. I just joined this club that I bet no one wanted to ever be a member of. Seems, as I have gotten older, I have joined several clubs like this one in fact. First was 9 years ago, was the Coronary Artery Bypass Graft club. Then a year later I joined the Renal Stone club, and shortly after that, the Abdominal Aortic Aneurysm club. Last year, I became an active member of the retinal detachment club. And this February, this one... But I am not really complaining, because I know how fortunate I really am.

Jack

[LUNGevityKristin]

Welcome, Jack!  Sorry to hear about your diagnosis, but really glad you found us.  This is a great, supportive group.  Did you have comprehensive biomarker testing done?  Do you have any mutations?

[jack14]

Thanks. I am waiting on the results of a gene panel. 20% tumor cells are positive for PD-L1 (membranous positivity). I have a 8mm right upper lobe lung nodule that glows moderately on the PET scan. A few axial nodes on the opposite side glowing brightly. One was removed and biopsied.

An MRI of the brain was negative.... 

 

[jack14]

I am asymptomatic at this time, other than some soreness in my arm where the lymph node was removed. My Oncologist, said they would start me on Keytruda and I wouldn't need chemo. She is waiting to see what the panel comes up with before starting because she might include a target drug? If I understood her correctly.

I am wondering, if since I may only be getting Keytruda by infusion (200mg over 30 min every three weeks)? If I am interpreting the regimen correctly, that is.... that I may not need a port? How many blood draws are typically drawn during the three weeks, if all goes well? I have good veins but I am not sure how harsh the Kertruda is on them and if there are any target drugs added to the regimen that might be....Aren't chemo drugs harder on the veins and one reason why a port is needed? I just don't want to go back in and get that port. unless it is necessary. For one thing, I have this incisional hernia and I have been having some issues with constipation and pain in my abdomen every now and then lately. And after any general anesthesia, opiods, etc.  I end up constipated as heck......

I know I should ask the Oncologist these questions. This sure is one bad ride.

[Rose Kaiser]

I have been on Keytruda and Alimta every 3 weeks for almost a year and the port was a godsend for me. I have labs run before every treatment and I usually have it drawn from my arm the day before chemo so I don't have to sit and wait for the results before chemo. I live close to my oncologist so it's no problem for me to make that extra trip. Since you have good veins, you may not want the port. My veins aren't that great. I had my first treatment through my arm and I decided right then the port was for me. As far as the drugs being hard on the veins, that's a good question for your doctor. Be sure to write all your questions down. 

Good luck and you are right - it is a bad ride but it really does get better.

Rose

 

[jack14]

Thank you Rose.

[Babs]

Hi Jack!  Welcome.  I am not on Keytruda but on Durvalumab.  I get an infusion every 2 weeks for 1 hour.  I don’t have a port.  I can’t have one as the port goes into the Superior Vena Cava and mine is occluded.  I have horrible veins and I really haven’t had any trouble. I have labs drawn every other treatment and it seems that the time in between seems to be enough for the veins to rejuvenate. I also did a couple of the chemo treatments without a port or a PIC and I didn’t have any problems.  

If your Doctor agrees, I would try it without the port if you really don’t want to go down that path.

Good luck on your newest journey and you have found a wonderful group of folks here. 😊

Babs

 

 

 

[Tom Galli]

Jack,

This provides my view on a port and any form of infused chemotherapy or infused treatment. Moreover, as a newly diagnosed survivor, this might be helpful.

You'll have a ton of questions as you proceed through treatment and this is the place for answers. We don't replace your physicians but we are here 24/7 and have experienced what you are about to go through, thus might be a valuable resource. Welcome here!

Stay the course.

Tom

[jack14]

Thank you Rose,  Babs, and Tom! I really appreciate your comments and tips. I hate that you guys are having to go through this nightmare and am so thankful for your kind considerations and information. I will try and share what, if anything, I might learn along the way with my brothers and sisters here as well.

[D iane]

jack what is your actual pathology?  Stage 4 SCLC is small cell lung cancer.  Reading your posts it seems you have a sub type of non-small cell. (NSCLC) The gene testing and your treatment isn't usual for small cell.   Even still, interested to hear how you are making out?

[jack14]

Hi D iane 

My nightmare started with a serial CT of a 6mm lung nodule that was at the apex of my right lung, adjacent to the pleura. It was irregularly shaped, making it more suspicious for malignancy. A followup CT a few months later revealed a possible increase of 2mm in size, no penetration into the pleura, but a new, enlarged lymph node (axial-under left arm) on the opposite side of the chest. Nothing in the lymph nodes nearest that lung, in the center, or within the abdomen / pelvic cavity. A PET scan showed the lymph node glowing brightly along with a couple of others going up my neck. The lung nodule was moderately glowing. Nothing else was active from the base of the skull to mid thigh. A brain MRI was negative.

Results of biopsy:
Poorly diffrentiated carcinoma with glandular features, predominantly involving fibroadipose tissue. Focal perineural invasion is identified. See note.

Note: Submitted immunohistochemical stains are reviewed and show that the tumor is positive for CK      (strong diffuse)and TTF-1 (rare focal) negative for CK20, P63, and p40. Additional immunohistochemical stains are performed at Johns Hopkins Hospital and show that the tumor is focally positive for CDX-2 and GATA-3 with rare scattered labeling for p40. They are negative for Napsin A, NKX3.1, PAX-8, and TTF-1. Muccicaramine highlights rare intracellular mucin. DPC4 is retained in the tumor cells.DNA mismatch repair repair proteins MLH-1, PMS-2, MSH-2, and MSH-6 show retained nuclear labeling in the tumor cells, an immunoprofile most consistent with intact  mismatch repair (MMR) and microsatellite stability (MSS).

The immunoprofile is not entirely specific for a site of origin. The presence of intracellular mucin suggests that this may represent an adenocarcinoma. There is a very focal p40 labeling and the presence of a squamous component cannot be entirely excluded, however there is not evidence of significant squamous diffrentiation in this material. The immunohistochemical labeling pattern is suggestive of an upper gastrointestinal / pancreatobility primary and clinical evaluation of those sites is recommended. However, some lung tumors can show a similar pattern and can be TTF-1 negative and this site should be excluded clinically. In addition the GATA-3 and focal p40 labeling could be seen in urothelial primaries, however, this site is considered less likely in this case. Clinical and radiographic correlation are required.
 

The diagnosis is NSCLC Stage 4 PDL1 20% Treatment is immunotherapy with Keytruda 200 mg IV every three weeks.

I remain asymptomatic and a recent CT scan revealed no changes other than a slight enlargement of one of the lymph nodes under my left arm.

 

I hope the best for your husband, and you in your battle. I understand that the new radiosurgical devices are near 100% effective in eliminating brain lesions with little to no damage to the healthy tissues. That is a big relief for me because even though my MRI didn't reveal anything, there is a pretty high probability that I might have something in the near future. I have tried to find out how effective  Keytruda immunotherapy has been in preventing brain METS, but I have been getting conflicting opinions.