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Not what I wanted to hear...


LexieCat

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So the cancer HAS progressed. Per yesterday's scans, the primary tumor has grown slightly, as have at least some of the lymph nodes.

My oncologist was reviewing the scans for the first time while I sat there--apparently because my scan wasn't reviewed by the radiologist until afternoon, it wasn't there when he was reviewing the charts for today's visits. He said, "It's not a lot of progression." I said, "Isn't that like being 'a little bit pregnant'?" and he said no, in terms of prognosis this was a whole lot better than seeing an "explosion" of progression. The question was where to go from here.

He's recommending a clinical trial that involves infusions of Keytruda and another brand new immunotherapy drug, named for now as CAN04, described as "a fully humanized Anti-IL1RAP monoclonal antibody." It sounds like a pretty complicated schedule, with the first several weeks having weekly infusions, and eventually back to every three weeks. And some infusions are with both drugs, while some are just Keytuda. Apparently this second drug is like a "booster" for the Keytruda. It's a Swedish drug and it's a Phase I trial, non-randomized, so everyone gets the new drug. No more Alimta, either--just the two immunotherapy drugs.

He brought in the nurse who coordinates for the study. I have to be formally approved, but I meet all the criteria so they don't see any problem with my being accepted. I also need to have another biopsy via bronchoscopy. I asked about a PET-CT, but he sees no point because there were no signs of mets anywhere else on yesterday's scans.

So no drugs for me today. They said they like to get most of the previous drugs out of the system so they are starting with a blank slate. Hopefully I can schedule the bronchoscopy soon--they were guessing it might be another 3-4 weeks before I start the trial. 

Obviously, this is a bummer. I can't say I'm totally shocked after the equivocal scan I had last time, but still disappointing. I'm doing OK, though--as the doc said, something like this almost always happens sooner or later, and I have a lot of confidence in his judgement. So I'll be wading through the 30-page consent document that explains everything, over the next few days--I'll have to come in and sign it once I'm formally accepted. And his SUGGESTION was that I try to have my ophthalmology procedure (the laser thing, if I'm having that done) before we start the trial. So I'll call my ophthalmologist today and have the scheduling person pass that info to the surgeon (who sees patients in that office on Thursdays).

Thanks for all the good vibes you all sent--they were good for my spirits!

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Lexie, I may have missed it in other threads but where are you being treated at, if you don’t mind sharing of course.  
I’m glad you said you are doing ok. That’s the best medicine right now until your new treatments start.  I’m rooting for you!!

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Lexie,

Man! Progression just sucks! I was so hoping to celebrate your good fortune!

It does sound like you are in good hands at UPenn. This is exactly the advantage of having treatment at a state-of-art research center. Physicians are well connected with research and as a result, you are well connected with opportunity.

I'll also pray for a good outcome. 

Stay the course.

Tom

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1 hour ago, Tom Galli said:

It does sound like you are in good hands at UPenn. This is exactly the advantage of having treatment at a state-of-art research center. Physicians are well connected with research and as a result, you are well connected with opportunity.

Thanks, Tom. I have you to thank for indirectly connecting me there. You had gotten a recommendation for a Penn radiation oncologist, and around the time I did that I ran into the problem with the comprehensive molecular testing (my then-oncologist was unwilling to order it). Since I already had connected with Penn, I requested a consult with a medical oncologist there, and by happy luck was connected with Dr. Bauml, who was not only willing to order the additional testing, but seemed very on top of all the latest research and was pleasant and respectful to deal with.

So thanks for putting Penn on my radar!

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This sucks, Lexie, and I'm disappointed for you as well.  I, too, was hoping to celebrate another great scan for you.  I'm happy that your onc has a plan laid out for you and it will be interesting to hear how the trial goes and I hope it goes fan-flipping-tastic!  I used the time in between my two treatments to get some much-needed dental work done so good call on getting the opthalmology procedure done and out of the way.  It felt good to me to take care of something "normal" for a change.  

Thinking of you and still sending good vibes your way.  

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1 hour ago, Shella677 said:

Lexie, I may have missed it in other threads but where are you being treated at, if you don’t mind sharing of course.  
I’m glad you said you are doing ok. That’s the best medicine right now until your new treatments start.  I’m rooting for you!!

I'm being treated at the Abramson Cancer Center at the University of Pennsylvania--right across the river from me (about a 30-minute drive). 

I was first diagnosed almost four years ago (and had my lobectomy) at the MD Anderson Cancer Center at Cooper Hospital in NJ. That was fine until the cancer returned, I wasn't wild about my new oncologist (old one had moved), and the new cancer was Stage IV. I decided I needed a "bigger gun" and consulted with my present oncologist (a friend of Lungevity). I couldn't be happier with the care I've received at Penn Medicine. It's a highly-ranked NCI Comprehensive Cancer Center.

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@LexieCatIm sorry to hear that it has progressed. I’m glad you sent this on my end so I’d could see it and be a lil more informed. I can’t help to have noticed that your being treated at the same exact hospital I will be starting my treatments. What a small world! Prayers from me and hope that the clinical trials work in your favor. 

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@AleHondaaWho's your oncologist? Are you being treated in Philadelphia at the Perelman Center?  I LOVE the people at Penn--have not encountered anyone who hasn't been awesome, from the clerical staff on up to the doctors.

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@LexieCat I’m being treated at the Abraham Cancer Center in West Chester, Pa. My oncologist is Dr. Michael Costello. I was recommended by a coworker that her husband had cancer and he’s Currently NED. She told me Penn would make everything smooth and take care of the issue so I took my butt up there lol. 

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Lexie, I will echo the others in their disappointment and hope for a good outcome. I also am on the triplet and Zometa. I get my 4th round of the triplet tomorrow with scans the first week in May. 

You have some great minds and talent in your corner. Hope, prayers, good vibes and everything else headed your way.

Jenny

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9 minutes ago, AleHondaa said:

@LexieCat I’m being treated at the Abraham Cancer Center in West Chester, Pa. My oncologist is Dr. Michael Costello. I was recommended by a coworker that her husband had cancer and he’s Currently NED. She told me Penn would make everything smooth and take care of the issue so I took my butt up there lol. 

Aw, too bad, I was hoping we could meet for coffee in Philadelphia. Every infusion I treat myself to a Starbucks breakfast or lunch--there's one in the building. Penn is fantastic. I can't imagine a better place to receive care.  I imagine West Chester is much closer for you--how long of a drive is it? 

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10 minutes ago, Jennedy said:

I also am on the triplet and Zometa.

I just sent a message to my care team to confirm I will continue getting the Zometa. They said yes, it will be continued on the same schedule. I not only have the one bone met (which hopefully hasn't progressed), but osteoporosis, so I want to make sure my bones stay strong.

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27 minutes ago, LexieCat said:

Aw, too bad, I was hoping we could meet for coffee in Philadelphia. Every infusion I treat myself to a Starbucks breakfast or lunch--there's one in the building. Penn is fantastic. I can't imagine a better place to receive care.  I imagine West Chester is much closer for you--how long of a drive is it? 

I actually went up to that hospital for my neurosurgeon appointment so I have an idea how massive of a place it is. It’s really a good place to receive treatment. West Chester is only a 30 minutes or a little more depending on 95 traffic. I’ll also be going to Kennett Square at another location they have for my Neulasta Infusion. 

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That's good--sounds like it's about the same distance for you as the Philly location is for me. Yeah, PCAM really is huge. Fortunately, I've figured out where all the places I need to go are located. Though I inevitably turn the wrong direction when I come out of any door. How I survived before GPS still amazes me.

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Teri,

  I read you post in the Immunotherapygroup and like the others I am sad and bummed to hear this update -- But, I do think this trial sounds very promising and I sincerely hope it will work well.

    After reading your post here and reading about the (30 page consent form),  I recalled that LUNGevity has posted looking for input on trials and the documentation.  I copied and pasted their POST here for you to look over -- Maybe this is something you may be want to take part in --

 "Clinical trial participants, we need your help! Clinical trials are the backbone of getting new treatments to people with lung cancer. However, it is critical that potential trial participants know what they are signing up for. If you are willing to share with us the informed consent form that you signed for your clinical trial, we will use it to learn about common problems that prevent the informed consent form from being accessible to all. You will also be invited to share your thoughts on how informed consent forms can become patient friendly as part of a group discussion. This project is open to those residing in the US.

Interested? Please email Dr. Bellinda King-Kallimanis at [email protected]"  - It was posted on 4/13 in the LUNGEvity Immunotherpay FB Group at this link https://www.facebook.com/groups/immunolung

    Please know we will ALL be rooting for this trial to be a big success!     

                           Lisa

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Sure, once I get through the form I'll be happy to share it. I feel like I need a day or two before I go through it in any detail--still processing the whole situation. I'll have to make a list of any questions before I sign on. 

Thanks for sharing the post, Lisa.

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Teri, 

For years, you've been there for us, and now it's our turn to rally for you.  That was definitely not the news we wanted to hear, yet in your adopted Jersey ways, you are looking into what's next with grace and courage.   Clinical trials have some benefits, in that I believe the medical team serves in a more attentive role while managing the treatment plan.  Who knows, maybe something will pop up in the bronchoscopy results?  I am very sorry the news was not better, however, monoclonal antibodies seem to be the next generation.  You will be receiving leading edge therapy and we all be rooting for you.   Will your son and daughter be coming back East anytime soon?

Hang in there--- we're all going to be on this ride with you. 

Michelle 

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29 minutes ago, Rower Michelle said:

Will your son and daughter be coming back East anytime soon?

Thanks, Michelle. No immediate plans for the kiddos to come out here, but hopefully I can get out to Colorado for Christmas. I talked to both of them today, as well as their dad and my brother. Everyone is, of course, disappointed and concerned, but also hopeful about the trial. 

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Hey, I just read about your results and I feel for you in terms of not receiving the greatest news. However hard it may be to take, I always try to look at things as positively as possible. According to your oncologist, while there was progression, it was minimal. Now you can say that he only stated that to be kind, but I'm sure if he was really worried, you would be involved in very aggressive treatment a lot sooner than a coming trial. Add to that the fact that you are being treated at a pretty highly ranked cancer center and as such you have ample opportunity to be able to be involved in cutting edge trials. In comparison I feel as if my treatments are rather kind of like the good old days where they used leeches in backwoods Wisconsin...

And finally, I don't know of too many who are as well versed in cancer and it's treatments than you or much less would be able to even start to understand a 30 page consent form as well as you will be able to. Your past experience has uniquely made you the best capable to not just survive, but to be able to gloriously beat this. Your intellect and people skills are quite evident on these pages and they would not be the same without you. I have every faith that you will do everything you can to continue to be here for everyone else. Thankfully for the rest of us, its just the way you are... Just know that I'm pulling for you as well and sending you good vibrations always (I'd say praying for you but I too am an agnostic...so that's not happening). 

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