Here for my Mother - mets to bone, brain, liver

[Peege]

Hi All,

 

First, let me thank you for stopping by to read this.  Though my mother has been dealing with a diagnosis since January, this is the first time I have sought out a forum. My mother is a very strong and stoic and active 78 year old woman who up until the time of her diagnosis was still skiing regularly. She raised alone me after my fathers death when I was 5.  She tends to be very private and though she shares with me her my chart, she prefers to see her doctor and deal with this largely between her and her housemate.
 

Last January she was diagnosed with a progression of her previous lung cancer for which she had had surgery in 2017. On a routine mammogram they found a tumor, and subsequent scans she had Metastases to her brain, bone, breast and liver.  She was given the triplet treatment of Alimta, carboplatin, and Keytruda — and now has had 3 maintenance cycles without carboplatin adding in Zometa.

 

 I seem to remember her doctor saying that if it progresses there is no treatment they can pursue — She has a very few tumor markers or whatever it is that allowed them to target mutation? her PDL1 is a small percentage and a KRASG12v mutatation.

Up until now her disease has been stable but just recently they remarked a growing tumor in her liver. (It has grown a half centimeter since July). She sees her doctor today and I am just trying to prepare myself also knowing she might not share the bigger picture with me. If her brain mets and bone Mets are stable would they offer her radiation? Or surgery? Is there another line of therapy they can try?

I appreciate amy wisdom you might offer! 
 

Pam in Minnesota

[LexieCat]

Hi, Pam,

For the brain mets it will almost certainly be radiation. For the bone mets, it depends on their location.

My cancer had a similar course. I have no targetable mutations. I had a lobectomy in 2017, and last year, almost three years to the day, the doc found cancer in the other lung. This time it was Stage IV with one small met to the sacrum. I had the same triplet (plus Zometa) as your mom and responded great to that, but when I went on maintenance of Alimta & Keytruda, my cancer started to progress. I had additional bone mets and a spot on my liver.

My doctor recommended one of a couple of clinical trials they were doing at U. Penn (where I'm treated), but I found another trial here on the forums that was being done at the other cancer center where I had my lobectomy. My first scan after that was terrific; the second one more "iffy;" and now I'll have to see how the next one looks.

My oncologist told me there were literally hundreds of clinical trials for which I would be eligible, given my diagnosis and treatment history. So my suggestion would be to look into clinical trials and have her discuss any interesting ones with her doctor. Her doctor might know of some, or there are free services to match you to potential trials. Go2 Foundation does that; Lungevity has a matching service; and there are others out there. If you want to browse the possibilities on your own, you can do that at https://www.clinicaltrials.gov Every trial has its own criteria for who can or cannot participate. The cool thing about clinical trials is that you get to try out the latest and greatest science has to offer. There's never any guarantee it will work, but we don't have that with standard treatments, either. If my trial doesn't do the job, I'll most likely go for another. From what I understand the next standard line of treatment would include chemo much stronger than what I had before--a prospect that is less than appealing! But there are lots of trials in the immunotherapy sphere--certainly worth looking into.  

[Peege]

Thanks so much lexieCat!

 

This gives me so much hope and offers a direction that I wouldn’t have even known how to navigate ♥️
 

My mom’s team is affiliated with the University of MN and their research team — I will definitely explore that!

I hope you have a good day — I’m so grateful to you I’m nearly in tears over here. 
 

Pam

[LexieCat]

Great--it definitely helps to be near a good research hospital. 

One thing--for my trial and several of the others I've seen, having untreated brain mets is a disqualifier. So addressing those brain mets (as I said, most likely with radiation) would seem to be the first order of business. I had to have a brain MRI before the trial, but my surgeon (who did my lobectomy, port implantation, and tumor cell harvest for the trial) told me not to worry--if any mets showed up we could treat them immediately and I could still do the trial. As it turned out, I had no brain mets but it was good to know they could be treated quickly.

Just one thing to keep in mind. For trials, they want to stick with only one cancer treatment--so they don't want to confuse the results with radiation. But radiation first can zap the mets so she wouldn't be disqualified on that ground.

[Peege]

I wondered about that! If I remember correctly maybe there is some thing about she had had lung cancer previously — her original diagnosis had been caught early on a scan and she had a wedge resection in 2017 but no radiation or chemo then.
 

When the reoccurrence was found this past January she did have radiation for the brain mets which has kept them stable — and then they began with the chemotherapy regimen.  I will be very curious to know what her oncologist suggests today and I may follow up on this thread just to check in because often it’s so overwhelming. ♥️
 

I can spend my hours combing medical journals and just not know if I’m on the right track 🤷‍♀️

Thanks again for the time and wisdom. 

[LexieCat]

Oh, I didn't realize she'd already had the brain mets treated. She should be in good shape as far as that goes, then. They will still likely order a brain MRI before any trial begins. I never went through so much testing in my life as I did for my trial!!

[Babs]

Hi Pam from another Minnesotan!  I live in Maple Grove and happen to be doing a clinical trial through the University of Minnesota.  I was seeing an oncologist with Park Nicollet and the Mayo in Rochester and had my Dr with Park Nicollet refer me to the U.  They matched me with a clinical trial and here we are.  I had a scan 2 weeks ago and it shows some slight improvement.  
 

Does your Mother receive care at the U?  I really like the staff and my Doctor there.  Let me know if I can answer any questions .  
Babs

[LUNGevityKristin]

Hi Pam,

I'm so glad you posted so we can share resources that might be able to help you and your mom.

First, here is the link to LUNGevity's Clincial Trial resources that Lexi refrenced.  https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/clinical-trials

If you use Facebook, there is a KRAS specific group that is filled with helpful information: https://www.facebook.com/groups/KRASlung

There is also a Caregiver group on Facebook: https://www.facebook.com/groups/LungCancerCaregivers

In addition, LUNGevity hosts a monthly Caregiver Virtual Meetup that is happening tomorrow.  It is a great way to ask all kinds of questions and get support from others whose life is affected because a loved one has lung cancer. https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups

[Rower Michelle]

Hi Pam, 

Ditto to everything Lexie said, you've been given some great advice.  There's a lot of research going on in KRAS, so a call to the Go2Foundation might be worth your time.  There's so many clinical trials it's impossible for the medical oncologists to keep track of.    My mother was 78 years old with cancer and she too kept much of her medical treatment to herself.  She didn't even let my Dad attend her doctor appointments.   I took her lead and she would ask for help on occasion which was really hard for me to adjust to at first.  I had her oncologist's cell phone number and could call at any time if I wanted, but my mother alway ran the show and I respected her wishes.   I think it's hard for the 70 something parents to let their "kids" assist, at least it was for my family.    

If you have access to MyChart, the best guidance I can give you is to not Google every word in the scan results.   Scans are read by radiologists who are not lung cancer specialists.   Often times, the oncologist may disagree or have a different interpretation of the scan results.    So you might want to want until the oncologist places their interpretation into the notes for clarification.     

Michelle 

[Peege]

Thanks everyone for the lovely advice. My mother developed a cough and lung infection a few weeks ago which seems to be worsening and as of yet not resolved with steroids.  Her latest scans showed some mixed results — some regression and resolution — but additional mets in bone and actually in her thigh(?) which the oncologist thinks is somewhat odd — also the progression in her liver.  We go to the oncologist tomorrow to get a clearer picture of what’s next.  I really appreciate all of you.  I feel somewhat alone as my mother hasn’t wanted me to share this with anyone and of course my husband and kids (11 & 21) are wonderful in loving me  but I don’t want to scare them with how upsetting this is for me. 
 

thanks again,

 

Pam

[LUNGevityKristin]

Hi Peege,

I can't say enough how wonderful the caregiver virtual meetups have been.  It's a great place to get support.  Our next one is a week from Thursday.  Would love for you to join us!

[Tom Galli]

Peege,

I'm just catching up on your post. Sorry I missed greeting you when you joined us in September. To summarize, your mom had a recurrence after resection of a lung tumor in 2017. I assume her diagnostic stage then was IA or IB. I also assume she has NSCLC adenocarcinoma with a low PDL expression and KRAS G12V driver mutation, and that this diagnosis was made from a resected tumor biopsy by both histology and laboratory testing in 2017. Further, that her doctors are treating her lung cancer as a recurrence assuming the type (adenocarcinoma, KRAS G12V) remains the same as discovered 4 years ago.

Now scans show progression after combination chemotherapy with immunotherapy (Alimta, Carboplatin, and Keytruda) and tomorrow's  oncology consultation focuses on what's next.

Here are my suggestions for discussion topics.

Lung cancer and lung infection are not a good combination. No improvement after steroids suggests perhaps more than an infection. If it were me, I'd want to know definitively what is causing the cough so I would press for at least an x-ray (better a CT scan). I'd also press for treatment that resolves the infection, if it is ruled an infection. You might want to ask for at home respiratory therapy using a nebulizer and albuterol to reduce irritation and perhaps reduce coughing.

I believe the key point is the oncologist's suggestion for next treatment. Lexie's idea to inquire about a clinical trial is a good one, but I'd also explore what type of treatment is appropriate and available now. Perhaps back to the triplet if your mom can tolerate Carboplatin. I trust you are accompanying your mom to this very important consultation.

Stay the course.

Tom

[Peege]

Thank you for the great advice. I was able to go to the visit with my mother.

 

The oncologist is following her infection closely — and is concerned it may be related to the Keytruda. In fact just tonight she emailed with the news that there was filamentous fungus in the sample they collected and she is concerned about a potentially serious fungal infection.  

They are going to be following up in the next few days with blood work and a bronchoscopy — so her next steps in terms of treatment are a bit on hold right now. 
 

There is some talk of switching her to gemcitabine (?) and that in trials it seemed promising for allowing the body to become sensitive again to the Keytruda(?) The mild progression in her liver and the new bone mets they are also considering radiation.  When her lung infection is resolved she will be consulting with a radiologist.  they really don’t want to stop the Keytruda unless absolutely necessary since it has been so effective in stabilizing her disease until now. 
 

she has another brain scan and check in with her neurologist about her brain mets at the end of this month.  I really hope they can get this lung infection under control.  
 

So grateful for your wisdom.  
 

 

Pam

[Peege]

HI everyone, 

 

I just wanted to update everybody. My mother's kidneys showed signs of AKI after a treatment break in December.  She was able to go to Mexico with her partner, and to enjoy some time without treatment -- assuming she'd come back to the FATE trial here at the UMN (a trial with Keytruda and other things) but by the time she had the appt to discuss next steps her kidneys were in rough shape -- after three weeks of work ups and diagnostics and IVF and one blood transfusion -- the last time she was in with a nurse practitioner they suggested she set up a conversation with hospice.  I knew what was coming but I was pretty underwhelmed by how her care team/onc handled it -- and to not have the conversation come from her but from a NP my mother didn't even know?

So that's where we are now.  I had a good friend die of kidney failure in the last few years -- so I feel I know a version of how this could go -- but she never got to hospice and that's not what i want for my mom -- I'm hoping she agrees to this next step -- but it's her journey and I can only suggest and support.

 

Thanks for all your care and wisdom here, 

 

Pam