LouT

Thank you so much for the words of support. I have an amazing support system and a girlfriend who has been right with me here in the hospital the past two nights.
I'm going at this with a take charge and positive attitude. My day shift nurse even said that we have such a positive outlook on life and those are usually the type that come out with good stories.
I'll get my lung biopsy results in about a week or so and supposed to meet with oncology next week. So I will update as I get them. Just have positive thoughts for me!

Sad to hear this update jkidd on inability to remove either the tumor or kidney and the aggressive nature of the cancer.  I'm glad you have a plan with the immunotherapy.  I sure hope that will shrink your tumor so they can try removal again.  Yes, on difficult three months ahead... hang in there as best you can.  I hope you have good supports - can help a lot even while these are still solitary experiences too.  Sending support and healing energy....  Please keep us updated....

Sadly the procedure didn't go as well as planned. My surgeon tried for three hours, but the kidney tumor has become attached to my back muscles. He tried for three hours, but didn't consider it safe to move forward and so the kidney and tumor are still inside me. They did a long biopsy yesterday and a CT scan of my head this morning.
 
I will meet with the oncologist and they are going to start me on the immunotherapy therapy ASAP to at first stop the spreading, and then to shrink the tumor where hopefully in about three months they can try to remove it again. The really bad news is the oncologist said this is the most aggressive cancer this hospital has ever seen.
 
I have a hard three months or so ahead of me.

So good to have an update.  ❤️

Kelly,
So sorry to hear about your mom.  You covered a lot in your post and much of it is around the "malignant pleural effusions".  These are serious indications of difficult prognosis.  You need to sit with the leader of your mom's medical team and have a frank discussion about being properly informed of your mother's disease, diagnosis, treatment, and prognosis.  If they won't do this then you need to request different doctors that will properly communicate with you and your family.  

Once you can get that issue resolved you can then better understand what is happening, and what is necessary to do.  Please update us on your progress in this situation.
Lou

Just want to send support, jkidd!  You've received some good feedback from edive and Tom.  Wishing you the best and keep us updated....

Jkidd,
Welcome here. I completely understand your concern.
I agree with edivebuddy. Speculation does not mean cancer but it is a concerning sign, especially given the size. But, after 20 years of surviving lung cancer, my yearly CT scans still report speculated lung nodules.
Here are some suggestions. Ensure your surgeon submits a biopsy of your kidney tumor for 2 kinds of evaluation: a histology (microscope) procedure and a follow on laboratory analysis to check for biomarkers in the sample. The histology examination is always performed while the biomarker testing may not be.  Laboratory testing will report if your cancer will respond to new types of chemotherapy including immunotherapy that can control or hopefully eliminate your cancer.  Here is some more information on biomarker testing.
Has your surgeon performed a PET scan? This page contains information about PET scans and what they mean. The PET scan will report if tumors or nodules are metastatic. If you've not had a PET scan and if the histology examination shows cancer in your kidney tumor, then after surgery, consult with a medical oncologist after you recover from surgery. This medical discipline treats cancer of all types and all stages.
Godspeed for tomorrow's procedure.
Stay the course.
Tom

Good to hear from you again, Blossom.  Glad (and not surprised) you're continuing to make slow even while steady progress.  Interested in what your surgeon says.... Thanks for the update!

Way to go keep moving forward 
Chuck

Thanks everyone. I’m getting along slow but steady. Have a follow up with my surgeon today. We’ll see what she has to say. 

Hi Lilly looks like you got some good advice.Praying for you and your dad. Try not to stress too much on your scan you will be OK
Chuck

Marie,
The truth is that the majority of lung nodules (ground glass opacity or not) are not malignant, so having one or more disappear is not an unusual thing.  Most hang around and are stable with the occasional one that can become potentially malignant.  In your case the news seems to be good.
Lou

Marie,
The truth is that the majority of lung nodules (ground glass opacity or not) are not malignant, so having one or more disappear is not an unusual thing.  Most hang around and are stable with the occasional one that can become potentially malignant.  In your case the news seems to be good.
Lou

Hi Marie!  I've look at different posts to check for new posts or updates/replies on previous posts.  Somehow I never saw this post by you and apparently no-one else did either.  To answer your question - yes, nodules and ground glass opacities can just disappear.  I've read this often occurs by the three month rescans.  Interesting you had rescan a month or so after your first scan - they must've been concerned about the 17 mm.  Great then it disappeared in such a short period of time.

Lily
I think Tom has it right.  Get a confirmation from all possible tests and then the precision radiation. You and you're dad are in my prayers.
Lou

Hi @LilyMir! I also have the ROS1 mutation! I am so sorry to hear the tough news about your Dad. The good news is that there are many targeted TKI's available to treat ROS1. If he does not have any brain metastasis, he should be eligible to start with the first line treatment called Crizotinib. I could not take that one because I already had brain mets by the time my ROS1 was discovered. There are many, many people in my ROS1 group who started with Crizotinib and have been successful with that for many years! I know of at least two who have been living well for over 10 years on Crizotinib! So if he has to have lung cancer, I would say he is somewhat "lucky" to have ROS1 (oh I really hate to use the word lucky, but you know what I mean.) I've been taking repotrectinib (Augtyro) since January 1st and so far it has kept everything in check. I do have some oddball side effects, but nothing I wouldn't willingly put up with to keep my cancer at bay as long as possible. When my repotrectinib eventually stops working, there is another drug in the pipeline called NVL-520 that I will be able to try. Hopefully someone, somewhere is working hard on the next treatment option after that. 🤞
I highly recommend you join the ROS1 Positive Facebook Group - we are called the "ROS1nders". It is a fantastic, informative group. There are people on there who can give you good information regarding all the different TKI's and side effects, etc. I've learned so much good information from that group in the months since my ROS1 was discovered. Here is the non-facebook website for ROS1ders - https://www.theros1ders.org/  They even list all the known ROS1 experts across the country and around the world in case your physician needs to consult someone. But I also highly recommend you and/or your Dad join the Facebook group. There is a form to fill out to join that is linked on this page: https://www.theros1ders.org/connect-to-our-community
Also good to know - the ROS1 mutation is NOT inherited. I was told to tell my kids they have no increased chance of getting that mutation whatsoever.
All the best to you and your Dad! There are many hopeful treatment options for ROS1 and I pray something works well for your dad with minimal side effects!

You are doing just fine.  Keep active and listen to your body it will tell you when to rest.  The spirometer is your best friend right now, so keep on using it.  The chest tube wound bothered me for months.  Sometimes it still itches/burns a bit today, but nothing to write home about.  You're moving, walking, breathing, and healing.  Keep up the good work!
Lou

Lily
I think Tom has it right.  Get a confirmation from all possible tests and then the precision radiation. You and you're dad are in my prayers.
Lou

Wonderful! It's a joy to hear this kind of news!

Awesome news celebration time

Awesome news, Blossom!!!  Celebrate for sure...

That is such great news! Our situations seem similar. My RLL segmentectomy is on 6/5. I am hoping they stay the same.  Until then I am jumping for joy for you!

Woohoo! That is such great news! So happy for you

Thank you Lou. I feel like a huge weight has been lifted off my shoulders.

Sending support, Lilly!  You have a lot on your plate right now with all the family health issues you mentioned let alone your own coping and health.  Just want to mention Dana Farber is doing a new INHERIT study looking at family/genetic lung cancer.  I have lost two sisters and my father to lung cancer so joined and was accepted.  In case you are interested and have the reserves.  Seems not that involved - online very brief questionnaire.  If that meets eligibility (which you would with 2 generations), then brief phone call.  If eligibility still met then a couple of brief online questionnaires.  They then sent a phlebotomist out for genetic and general blood draw, then every 6 month blood draws for 5 years.  This for other generations, let alone larger whole, which I hear your concern about.  Let me know if you have any questions....