Biopsy results

[Babs]

Well just as we guessed, the cancer is back.  Talked to the Mayo Dr yesterday.  Plan is Carbo/Taxol/Keytruda every 3 weeks for 4-6 treatments with a CT after the 3rd  treatment to see where we’re at.  Possibly able to look at SBRT at that point?  Hasn’t spread anywhere else.  I talked to the cancer center today to schedule my 1st treatment, (next Friday) and she told me it would be a 6 hour infusion.  WHAT????  I think I’m still in shock over that one.  I’m not sure I have ever stayed in one place that long, ever!  Should be interesting. 😬

Onward and upward .. Babs

[LexieCat]

Hey, Babs,

Sorry to hear your results. I'm still waiting on mine--maybe tomorrow. I fully expect it to be cancer, too, just hoping for NSCLC and some targetable mutations. Did they tell you what type of cancer, specifically? Are they ordering genetic testing?

I have ONE THING I want to get to do next Thursday, and then they can infuse me/radiate me/whatever to their hearts' content. 

[LexieCat]

BTW, where are you getting treated, and who's your oncologist? My former oncologist just moved to Minneapolis! Just looked at his FB page--he's at Allina, which apparently is a new place there? He says he's the "founding oncologist" there.

 

[Sabacat]

So sorry to hear that you're having a recurrence, but sounds like you're on top of everything.  Are you having all of the treatments at Mayo, or near home?  Six hours does sound pretty grueling!!  Maybe they're including a lot of front end stuff since it will be the first?  

Eight more days till we (hopefully) find out what my treatment will be.

Susan 

[Babs]

It’s NSCLC squamous.  I was already treated last August with chemo/radiation and then went on immunotherapy Durvalumab.  My last CT showed increased activity in the original location.  They have ruled out any spread, I.e. lymph nodes, bone and brain.  They are sending the tissue in for testing, however I have been told it’s fairly rare that squamous will have any mutations to target. Never say never!  
 

I am not having my treatment down at Mayo but here locally.  My Onc here and the one at Mayo are in agreement with the course of treatment.  My local Onc is with Park Nicollet and works out of the Frauenschuh Cancer Center in Methodist hospital.  Alina has been around here for quite some time.  
 

I hope you both get good news!
 

Babs

[Babs]

Lexie,

Maybe your previous Oncologist is in a newly opened Alina office?  Did you like him?

[LexieCat]

Here's how he described it: "the new Allina Health Cancer Institute in Minneapolis."  He's delightful--his name is Christian Squillante and he's famous for his wild socks. Really nice guy--we're FB friends and I've been updating him on what's going on with my situation. LOL, I was kidding him that he escaped to Minneapolis JUST IN TIME.

 

[Babs]

Lexie,

I looked him up.  He’s part of the Virginia Piper Cancer Institute located in Abbott Northwestern Hospital.  Abbott is a highly regarded cancer facility here in Minneapolis.  I’ll keep him in mind should I ever decide to kick mine to the curb.  Always good to have a recommendation. 😃
 

[LexieCat]

Cool, if you ever contact him, tell him Teri Garvey recommended him.

[Rower Michelle]

Hi Bab,

We’re all in this together, I’m really sorry to hear about all that’s going on right now.  I hope that it’s a small consolation that the medical team is actually doing biomarker testing  “fairly rare” doesn’t mean never.  That’s really cutting edge diagnostics.  Good diagnostics=precision treatment plan. 

I have a friend with squamous cell that didn’t have the testing and after the third occurrence he finally bullied the local oncologist into it.  Now my friend is doing great on one of the newer immunotherapies.  As greater testing becomes available these mutations become less rare.  
Michelle

[Sheryl E]

I am new here, posted only when I found out I have a lung nodule.  Found out yesterday that I have small cell lung cancer.  I'm a wreck and I don't know what to do next.  Pet scan a month ago showed clean other than this nodule.  I am so glad to have someone to talk to.  My lung biopsy was Monday and I am still sore from it.  I don't know if that is normal or not.  

 

[Rower Michelle]

Hi Sheryl 

I'm glad you found us.  I'm sorry you find yourself here in the club that no one wants to join.   A friend of mine recently said being diagnosed with lung cancer is like having your head in a blender.  Sounds about right to me.  It's absolutely terrifying for all of us.  Depending on the location of the biopsy site, it's normal to be sore for a few days, however if you don't feel right, pay attention to your body and report it the doctor immediately.   Doctors want to be informed, so it's not complaining, but reporting what's going on.  They can be the judge of what's normal in their clinical practice. 

So what to do now?   It's one step at a time.  You will have a brain MRI and a PET scan which will help determine what the Stage of the cancer is.  I'll be straight with you, Small Cell Lung Cancer is more challenging to treat.  It's really important to find an oncologist at a recognized cancer center that specializes in Small Cell Lung Cancer.  In the last two years, there has been a number of clinical breakthroughs, not widely reported in the literature so having a doc on board that understands the art and science.  

We always recommend staying away from Google, the data is very outdated and not helpful.  Take this one test, one day at time.  There's great information posted on our Small Cell Community as well. 

Michelle

[LexieCat]

Hi, Sheryl, and welcome! I'm so sorry about your diagnosis--it's pretty scary. What kind of biopsy did you have? I had a bronchoscopy on Monday and still have a slightly sore throat and a bit of a cough (though both are getting better).

There are a few people right now who are dealing with SCLC--I'm sure it will be helpful for all of you to compare notes and talk about treatment protocols, etc. I see you've already found the SCLC Forum--but please feel free to post anywhere. Glad you found us.