Progression .... again

[Jennedy]

Hi all, I had hoped for at least stable after 4 cycles of Carboplatin, alimta and Keytruda. But things have progressed. New nodules in the left lung, existing nodules increased and new metastases to the lumbar and thoracic spine, liver, hips. 

The current recommendation is Taxotere and Cyramza starting next week. With radiation to my hips.

I was also given the option of doing nothing. I asked about trials, nothing here. I have an appointment on 5/17 at OSU for a second opinion.

I did request on MRI of my brain just to be safe. That is this afternoon. 

I'm in shock.

Jenny

[LexieCat]

Oh, Jen, I am SO sorry. I know just how you feel--I had new mets show up on bone and liver, too, when I had my PET-CT scan last week.

Check with Lungevity, GoTo Foundation, and/or NCI for trials. Apparently if you enroll in an NCI trial, all expenses are covered, including travel, I believe. And get that second opinion, too. 

There are still tools in the toolbox. Don't even consider doing nothing just yet.

Sending a hug. Let me know if I can help at all looking anything up--I'm good at that.  

 

 

[Jennedy]

@LexieCat I briefly looked at the lungevity site about clinical trials. I'll look some more. We have called our kids and told them. Just finished an EKG, and my brain MRI.

[Rower Michelle]

Jenny,

I am so sorry.  I agree with Teri- before another round of chemo- looking at clinical trials with the help of Go2 & Lungevity’s clinical trial finders.  Sometimes a second opinion isn’t sufficient & many of my friends have had a life changing third opinion.  Stay hopeful. We love you! 
Michelle

[Jennedy]

Well, it keeps getting better. I'm i asked about the brain MRI. A 4mm enhancing lesion, and 5mm and 6mm ring enhancing lesions. They want to do SRS on them. I see a radiation oncologist Monday.

Thanks @Rower Michelle.

I know what I'll be doing this weekend. Lots of research!

[Jesse L.]

I'm so sorry to hear of your current diagnosis. I know it's the last thing you wanted to hear. Given the gravity of yhe situation, it's hard for anyone else to comment on what your next steps might be. You could go with a pertinent trial or you could start on alternative chemotherapy. And of course there's the radiation aspect as well...which is very likely something you will need as well.

Please understand that my recommendations are in no way meant to belittle where you're at, but rather just my feeble attempt at enhancing a critical decision on your part. First off, know that you are far from without options and therefore not by any means is all hope lost. Give up, do nothing...no way no how!!! Secondly, yes I would be doing due research into available trials and then I would be discussing what I've found and the educated recommendations of medical professionals to include my medical team, a second opinion, and even a third if need be. And lastly, and probably this just goes without saying, you need to choose what is best for your health. I know that I make it sound so easy and I just know too that it is not that at all. I'm so sorry, but understand that I'm just trying to help. There may come a time in my cancer journey/chess game/marathon when I'll face the same challenge. I'd like to think that's what I would do... 

I wish you the best with the problems you are facing now and I'd be most interested in your thoughts and decisions to deal with this. As stated above, someday in the future I may be you...      

[Tom Galli]

Jenny,

When it rains it pours! I remember, have been there, and understand what you feel. This disease drags on us like nothing else. 

The study suggestions are good ideas and worth lots of consideration. Search everywhere. Read this and contact these folks. 

SRS should fry the brain mets. Good call suggesting the MRI. 

Stay the course. 

Tom

[LexieCat]

Brain mets are scary for sure (never had one, but even the thought is scary). The one good thing is they seem to be very treatable with radiation. I'm sorry you're getting this on top of everything else. Good luck with the research, and follow up with questions about anything that seems interesting/promising. If it weren't for @KatieB's post on this forum about the trial I'm doing, I probably wouldn't have known about it. My oncologist at Penn had two trials in mind they were doing at Penn and I probably would have done one of those instead. Not to say they wouldn't have been more effective than the one I'm doing, but this one was an option I wouldn't even have known about, and the one I ultimately felt I wanted to do.

[Jennedy]

Thanks everyone. Now I have another question. Should I seek a specialist in SBRT and brain mets? The radonc I am seeing Monday is not a brain specialist. He did my lung and shoulder. 

[Jesse L.]

That is an excellent question...considering that the brain is kind of important (?), I would want to know that I had the best person on the job for that treatment. At least that would make me feel the most comfortable going forward. To get there I would be pressing my medical team for recommendations and for that matter even second and third party recommendations as well. Somebody out there has to know the best person/place/instition for the job. Questions...and after that, more questions to get what you feel you need. Persistence wins the day!!

Keep knocking those pegs down one at a time to get on the road to a better outcome... I'm pulling for you...  

[LexieCat]

There are lots of radio oncologists out there--but the brain is such a specialized organ I think I'd want someone highly experienced in that. Does your guy at least have a lot of experience treating brain mets? I'm not sure how those specialties break down--whether there are "brain met specialists" versus other kinds of radio oncologists.

[TJM]

I think they are physicists. Honest.

Peace

Tom

[Sandy N]

Jenny - I am so sorry to hear about everything you are going through.  You are definitely getting hit from all sides.  Everyone has given you some wonderful advice for sure and I really don't have anything to add to it.  Just wanted to chime in with my support and to also let you know that right now I'm halfway done with the Taxotere/Cyramza duo.  Not a fun ride but if it works.....   So if you do decide that's the way you need to go and just need someone to either ask questions of or vent about the treatment, I sure can assist with that!  Hang in there and please keep us posted!

 

[LUNGevityKristin]

Big hugs, Jenny.  Here is the link for Clinical Trial information: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

There is a clinical trial finder and also you can speak with a clinical trial navigator.

Who is your second opinion at OSU with?

[Jennedy]

@Sandy N Thank you! I will keep that in mind.

@LUNGevityKristin i am seeing Dr. Dwight Owen.

 

I saw the radonc today. I'm going start radiation on my left hip (back pain) Wednesday. I get mapped for my SRS on the brain tomorrow. That will be Tuesday or Wednesday of next week.

My daughter called me today to discuss whether or not she should move up her September 25 wedding. She wants me to be able to enjoy it. I'm not ready to admit defeat!

[Saturn_Bound]

Hi Jennedy,

I am sorry to hear about the progression. I am in a similar boat with my mom but we are remaining hopeful. You will be in my thoughts as well as I hold my moms hand through this process. ❤️

 

[Deb W]

Jenny,

I am so sorry to hear of the progression.  Please know you are in my thoughts 🙏

 

[Jennedy]

@KatieB Dr. Carbone Was my first choice, but he isn't accepting new patients.

[LexieCat]

Docs that work together generally consult with each other, though--even when the patients aren't aware of it. So you're likely to benefit from his expertise, even if it's indirectly.