So we have a plan...

[LexieCat]

Met with oncologist today and we decided to do the sequential chemo/radiation treatment--carboplatin/Alimta/Keytruda (four cycles, with scan after third cycle), then continue with Alimta and Keytruda while I start radiation. He still characterizes this as "less aggressive" than doing radiation at the same time, but the radiation oncologist was quite clear that he believed doing the radiation at the same time as chemo would be of minimal additional benefit. The RO believes the sequential treatment still represents the possibility of a cure. The medical oncologist, OTOH, seems not to view this as a curative course of treatment. He did tell me as long as I'm doing well and tolerating it that the Alimta and Keytruda could continue for two years. 

I wasn't totally satisfied with our discussion about the molecular testing results. The testing was done by Neo Genomics, and the tests were for PD-L1 (result 5 percent), and they tested for ALK, BRAF, EGFR, and ROS1. I asked about whether liquid biopsy might provide any additional information and he was fairly dismissive about it. He said because I was a smoker (former) he really didn't expect to find any mutations and that they tested for those that were most likely to be "actionable." He said if I failed to respond to chemo/immunotherapy, or if I had a recurrence later, THEN they would consider doing additional testing. He seemed fixated on the testing that was done being "by the book," and I don't know enough about it to question that further. 

Right now we're looking at starting chemo next week. He's going to see if there's any possibility my surgeon could get a port installed before my first treatment, but he said it might have to wait till after the first one--he didn't want to put off the first treatment until they could get an interventional radiologist to do it (which is who usually does it, apparently, but they are backed up). 

He ordered several prescriptions--folic acid (daily), two anti-nausea drugs (as needed), and dexamethasone (taken day before, day of, and day after treatment). Gotta get blood work, another COVID test, and B-12 shot. 

Dang. Looks like we're really doing this. 

Still have my consult this Friday with RO #2 at Penn Medicine. Oncologist knew the guy--apparently at one time they worked at the same place.

Rocking on...

 

[Lin wilki]

Sounds like a plan. However keep it in your mind if this plan is not successful you may be dealing with a rare mutation. Of course I’m saying this since that was my experience. Onc knew all along about my HER2 but still tried immunotherapy (bust) and standard chemo cocktail. Only worked slightly. Some modules  shrunk others grew. So now -HER2 target Kadcyla. Working for me right now

Just something to think about. If all the stars align you could end up on Alimta/Keytruda maintenance for a long while.  Wishing you success!!

[Steff]

I'm glad to hear things are moving forward! My mom was on the same triplet and saw very quick results from it.  I am keeping my fingers crossed that you have the same results as she did! 

 

[DebM]

Glad to see that you have a plan!  I know the waiting is tough.

I'm hoping you have great success with your triplet!

[Rower Michelle]

Hi Teti-

I’m very surprised they only did a limited biomarker panel that doesn’t sound kosher to me.  Linda’s experience is a good example to target the therapy.  ALK is another because it’s often missed in standard panels and only detected through Next Generation Sequencing (there are plenty of people with ALK and smoking history).  
 

The blood biopsy and NGS is now standard of care at KU.   This is a pretty big deal and worth pushing back hard on the oncologist or get a second opinion.  The idea of let’s wait and see if there’s a recurrence is arcane.  Dr Lovly says test don’t guess.   Not sure what “book” your doc is referring to but he needs the latest edition for sure!  😊

[LexieCat]

Ya know, that's pretty much what my own gut reaction was. On all three of our visits, he's seemed pretty close-minded and not very forthcoming--compared with my surgeon and the radiation oncologist I saw last week. I kinda feel less than confident in him, compared with those guys. 

I think I'll see if I can get a consult in with a medical oncologist at Penn. Maybe they won't recommend anything different, but I'd like to get someone else's take on it.

 

[BridgetO]

Hey Teri,   I'm glad to hear you have a plan and are getting started on it. I think a second opinion on the additional biomarker testing is a great idea, and a blood biopsy while you're at it. BTW, are your kids there now?

Bridget O

[LexieCat]

Yup, kiddos are here and we are having a great visit. They've helped out with a few things on my honey-do list.

Tonight, my son is making carnitas tacos for dinner!

I just discovered Penn Medicine offers a same-day virtual consult for new/prospective patients. I can also make a call this morning to RO #2, who I'm seeing on Friday, to see if they can suggest a way to see someone there quickly. I really don't want to delay starting treatment--it's been a few weeks already. 

[Babs]

Teri,

So glad you have a plan!  I also hope you find a good Oncologist.  That’s so huge when you are going through treatments like this since you see them so often, at least that’s how it’s been for me.  I have my 2nd treatment next week of Carbo/taxol/Keytruda.
 

Also sounds like you’re having a good visit with the kids.  Wishing you luck and mild side effects, or better yet, no side effects next week!
 

Babs

[Deb W]

Hi Lexie,

Your treatment plan looks a lot like mine.  I think it's B.S. that they aren't testing for more mutations.  There are several good videos on this topic.  Yikes, I meant to send a link - didn't realize you'd get the video here.  I pushed for those tests.  I had Guardant & Foundations (which I learned about from the wonderful people on this site) and the GO2 Foundation, but I had to push for both when I was with the first Oncologist.  The blood biopsy didn't detect the MET mutation, but the Foundations test did.  

 It wasn't until I received a second opinion that the MET mutation was found (or should I say uncovered as the result was there right in front of the 1st oncologist), but I guess he didn't see it.  Anyway, since I already had the first infusion of carbo/Alimta/Keytruda, the new oncologist said the board wanted to keep me on that treatment and  didn't want to switch me to another drug right away (Tribecta for the MET Mutation).  Lucky for me, after the 2nd round there was shrinkage and after the 4th the word "clear" was used.  I was put on a maintenance plan that started 3 weeks ago consisting of Alimta and Keytruda.  I experience fewer side effects, but still the fatigue continues.  I fail to get clarity on the course of my treatment as it changes.  First I was told the Alimta would be discontinued  in  October and I'd be on Keytruda alone until 2 years passed.  Yesterday, in the beginning of my appointment that was the plan.  Now, I'm told they will keep the Alimta for 6 months.  I asked why the change and he said that since I am tolerating it we can continue.  The goal being eradicating an possible Micrometastases  (which is what happened to me after the lobectomy in 2019).  So, it looks like the Alimta will not be dropped until February.

There are lots of people with smoking histories that get checked for mutations.  This seems like a real disparity.

I wish you all the best, and keep us posted.  I'd be happy provide you with support as you go through the triplet journey - just let me know.

Deb

 

[Sabacat]

Interesting perspective from your oncologist. 🤨  Interestingly, mine said (before we had results) that because my smoking history was so remote, he DID expect that we might find a mutation that could be targeted, and they ordered full FoundationOne CDX.  Turned out not to be the case, but at least we looked.  AND did also uncover info that leads him to believe that I will have a good response to immunotherapy, in addition to the PDL-1 40%.   Wonder why he's planning to continue the Alimta for so long after?  So far, mine is only calling for the Keytruda that long.  

Glad you're going to get another opinion at Penn.  Would be nice if all 3 docs were whole-heartedly on the same page with your treatment plan, but still great that you're getting it rolling with a plan that you're comfortable with. 

Susan 

[Sabacat]

Whoops!  I started my reply above last night -- before falling asleep in my chair 🙄.   Should have read all the later posts, and I would have seen Deb's about reasons for continued Alimta.    Absolutely agree that FULL molecular testing should be done regardless of smoking history.  Sure, there may be a lower statistical likelihood of certain ones being found, but it's NOT impossible.   And even those for which there's no targeted treatment today may have one tomorrow.  Of course, I'm a data junkie about everything, but it's really critical in this case.  

Susan 

[LexieCat]

Update--called Penn Medicine this morning and the Nurse Navigator is scrambling to try to get me an appointment tomorrow--if not, Tuesday at the latest. It helps that I already have all my reports/imaging discs dropped of for RO #2 (at Penn), who I'm seeing on Friday. She's gonna see if they can upload everything and worst case, I'll run over and pick them up and get them over to the right place.

She sounded rather shocked, herself, at my oncologist's attitude about the testing. She said that it's CERTAINLY better not to wait till there's a recurrence. 

Penn is a Comprehensive Cancer Center under the National Cancer Institute.

I have a feeling I may be switching.

[Tom Galli]

Teri,

I've been reading along trying to think about what I'd decide on testing delay vice starting treatment. It is a tough call. Your PD-L1 expression is in the zone where immunotherapy can be effective (as I understand the dynamic, close to 0% or 100% is the response indicator). Michelle makes a strong case for more targeted therapy testing, but I've also read that former smokers don't generate targeted therapy mutations as frequently as non smokers. As is so often the case with "modern day" lung cancer treatment (thank God), we are in the horns of the dilemma. 

I'd lean on RO#2. I bet there is a strong network among oncologists at UPenn and another viewpoint on wait for more testing or start treatment now could be a text message or email away.

As for a port, if RO#2 and the UPenn med oncs suggest starting treatment, you can start and schedule the port procedure after first infusion. So I wouldn't delay for a port install. I'd also get a flu shot.

Stay the course.

Tom

[Lin wilki]

Tom makes some good points. But if I were you I’d look to switching to the NCI hospital. See how you relate to the oncologist there

I know the feeling of delaying treatment. I had my 1st appt with the second opinion doc (the one I went with). They scheduled a needle biopsy. I already had a bronchoscope with 1st onc to diagnose my cancer but they wouldn’t proceed until they looked for all possible mutations 
So it took about a month and a half to get into my clinical trial and finally! get started. My feeling at the time was maybe my cancer is growing but treatment will take care of it

Continue be a great advocate for yourself!

[LexieCat]

Got my flu shot yesterday. I should be able to see a medical oncologist tomorrow or Tues--they can recommend whether I should start treatment next week. The Nurse Navigator seemed to think it's better to start with targeted therapy before getting immunotherapy, but she (a) isn't a doctor and (b) hasn't seen my reports/scans. 

Whether they find any mutations or not, though, I'm not a hundred percent confident that what my current oncologist recommends is truly informed by the latest research. I have a feeling I'll be making a switch.

[Rower Michelle]

I’m officially mad at this oncologist and totally retract my Tom Brokaw defense.  
 

KC has one of the “MD Anderson” hospital affiliates but they are not a NCI or CCC.  In the Metro the local perception is that the hospital system paid beaucoup bucks for the MD Anderson name and it’s a perceived as a little bit of a marketing scam.  
 

A CCC is probably a better approach for the long haul.  I understand the desire to get moving but it seems for reasons I will never understand lung cancer is rarely treated as an emergency.  
 

As you may remember my Mom has two tumors in her lungs, was discharged from the hospital in July but is just getting into the pulmonologist now.  Her biopsy is in two weeks.  Once the initial pathology is back, if it’s lung cancer then there’s already a plan in place for comprehensive biomarker studies.   It’s taking forever up there but at least she’s have a good treatment plan in place.  Worth waiting for.  In the meantime she’s garage sale-ing away! 

[Sabacat]

I'm all out of reactions for the day, but GREAT to see you can get in to a Penn oncologist so soon!  

One thing to keep in mind re starting treatment before molecular is complete -- I was told (doc, not nurse) that if you have had any immunotherapy, you cannot start on (many/all) targeted therapies.  That's why they hold off till all the data is in - don't want to screw up if you have a druggable mutation.   I think they were willing to start me on a chemo only round, but since we were only talking another week or two, at that point I decided to wait.  

As you know, I was super anxious to get started, but I think a week or two - if it means being sure you're getting the RIGHT treatment - would probably pay off.  JMO and worth every penny you paid for it! 😁😁😁

[LexieCat]

I have a virtual appointment tomorrow with Dr. Joshua Bauml, who recently received a Career Development Award from Lungevity! https://lungevity.org/media-releases/drs-joshua-bauml-wei-chu-victoria-lai-and-aaron-lisberg-receive-prestigious-lungevity (Somebody should really fix the forums so "Lungevity" doesn't keep autocorrecting to "Longevity" 🙄) They have all the reports and if they can't get the images (the nurse navigator I spoke with thought she could), I'll hand-deliver them before the appointment.

This doc is involved in some interesting research and trials. He's also got great reviews from his patients. 

I'll feel much better dealing with him, I think, than the rather stodgy oncologist I have now. Plus, it sounds like the RO I'm seeing Friday comes highly recommended (by Dr. Drew, on our Scientific Board). Both are with Penn Medicine, which sounds promising.

[Sabacat]

GREAT NEWS!!!  Can't wait to hear what he has to say!

 

[LexieCat]

Incidentally, I told the Nurse Navigator I doubted she could get MD Anderson to burn those discs that fast--they told me it would take a couple of days at least. She kinda gave me an evil cackle and said, "Oh, don't worry--I know how to get them. They tell patients it will take two days, but *I* tell them 'You're unnecessarily delaying a patient's cancer treatment, and I'm gonna put that in my notes.' I get them.")

I find that level of aggressiveness pretty attractive, lol.

[Rower Michelle]

I love the sound of an evil cackle.  All good news! 

[Tom Galli]

Teri,

Don't forget to remind Dr. Baumi of your connection with the Lungevity Foundation. And if that doesn't resonate, remind him you happen to know the Treasurer and board member of the Lungevity Foundation on a first name basis.

I'm confident that your prosecutorial leverage instincts will kick-in in the event the good doctor has a memory lapse. If he needs more reminding, my Colonel instincts are always available on short notice and with an even shorter fuse!

Stay the course.

Tom

 

[Judy M2]

Wow, is that the same Dr. Bauml who was so great in the Survivorship Conference?  I'd want him on my team. 

They use Dexamethasone before and after chemo treatments to make sure you don't have an allergic reaction. After my first couple of treatments, my (wonderful) chemo nurse said I could stop taking it since I wasn't allergic. 

Chemo port procedure is fairly easy (you're awake for it but sedated), but I got nauseous from whatever they injected me with pre-op. I needed a quick Zofran injection to take care of that.

Believe it or not, chemo days were the best for me. When the Benadryl hit, I got a nice nap in. Be sure to bring a blanket, chemo centers are always cold. 

Good luck with your choice of doctors and I hope you get all the mutation testing. 

Best, Judy

[Susan Cornett]

Good - new doc, plan to move forward - all going in the right direction. Be mindful those steroids will mess up your sleep. I was getting big doses and had the worst insomnia. Super Doc told me to alternate my nausea meds so that I was continuously on something and I didn't have much opportunity to get sick. I'm hoping you sail right through this.

Thinking of you -