CSN Login
Members Online: 8

You are here

Treatment decision

flutemon's picture
flutemon
Posts: 34
Joined: Jan 2019

I'm struggling right now to make a treatment decision.  

My back story:  Diagnosed Feb. 2018 with colon cancer and had right hemi-colectomy right away.  Stage 3 - 1 of 22 lymph nodes.  Xeloda as clean-up.  Then 6 months later scans show mets to the liver.  Folfiri + Avastin (6) then resection surgery for 3 mets.  2 mets were deep so I did SBRT. Then followed up with Folfox (6).  I was clean for another 7 months until we found mets had returned to the liver.  Doc suggested a clinical trial for Cetuximab+Monalizumab+Durvalumab.  They were looking for MSS with kras etc. wild, which I am.  I did this trial for 6 months but stopped when another met showed up and CEA started going up.  Then had liver resection + ablation to clear the liver again.

That brings us to now.  2 months after surgery CEA jumped so scans were done. There is a 3 cm met in the liver that wasn't there 2 months ago, as well as 2 other subcentimeter mets. And now there's a spot (6mm) in the lower lung that they don't think is a met, but it could be.  Results of ctDNA showed that the cancer has changed - HER2 amplified.

So there are choices to make!  The oncologist wants to do either targeted therapy drugs herceptin and perjeta alone or with chemo.  The radiation oncologist wants to do SBRT on the 3 cm met to stop it since it grew so fast. And we had talked about HAI pump with the liver surgeon/surgical oncologist before the last liver surgery in June.  

I don't think the spot in the lung is cancer.  The scan report said most likely infection - less likely met.  I'm more concerned about the fact that things pop up in the liver and feel like HAI pump would control that.  

So I'm just struggling with what to do.  Oncologist didn't seem keen on the HAI pump.  He was worried about lung, I guess.  It seems I could do HAI pump infusions along with targeted therapies. And on top of all of this, I just turned 65 and am adding a Medicare supplement plan so will need to wait until it's in effect.  Gives me time to figure it out.

Has anyone used herceptin/perjeta?  Alone or with something else?  Just wish I had a crystal ball to know what will work.  That clinicsl trial kinda burned me. What to do, what to do.

Thanks in advance for any advice.

abita's picture
abita
Posts: 957
Joined: Dec 2017

I am on a targeted drug after lung mets appeared while on flolfox, but on a different one. Erbutix with irintecan. Was not given option to not have the chemo as I guess the original study was with both. The liver mets shrunk to can't be seen on ct. The lung mets shrunk a bit at the first scan, now are stable. For some reason, lung mets are harder to get rid of. Sorry can't answer about the specific targeted drugs you are taking. I would ask about the studies, and how much adding the chemo changed the effectiveness.

Annabelle41415's picture
Annabelle41415
Posts: 6682
Joined: Feb 2009

Sorry to hear that you are going through all this and the decisions that you are faced with.  I'm not able to help with this, but I'm sure there are others on the board that have had the type of procedure you are talking about.  Wishing you the best.

Kim

npatel22526
Posts: 12
Joined: Sep 2019

Sorry to hear about the situation you are but I can very well relate to my father based on a talk with the oncologist yesterday.

He too is KRAS wild type and HER2 amplification so I've been researching since then. Here is what I found out.

There are two clinical trials specifically focused on exact same mutations

https://www.clinicaltrials.gov/ct2/show/NCT03043313

https://clinicaltrials.gov/ct2/show/NCT03365882

 

To layout more options in the future look at this paper, it gives me so much enthusiasm to fight till he beats it.

https://www.frontiersin.org/articles/10.3389/fonc.2020.548867/full

 

Hope this is helpful.

Nihir

 

flutemon's picture
flutemon
Posts: 34
Joined: Jan 2019

I totally forgot all of this after the decisions were made.  It must be my chemo brain Wink  

So we decided to do the HER2 targeted therapy but had SBRT (radiation) to the 3 cm liver spot before starting the infusions.  As of 3 weeks ago, my CEA is the lowest it's been since I've been diagnosed.  Don't know if that's due to the radiation or the targeted drugs, but I'll take it.  

I'm currently doing Herceptin/Perjeta infusions every 3 weeks.  I get treatment at UTSW from Dr. Kazmi who is working this trial (https://www.clinicaltrials.gov/ct2/show/NCT03043313) but I don't think I'm actually on the trial.  I wouldn't qualify because I had already done cetuximab. The drugs are pretty mild, but they are causing a great deal of diarrhea - enough to cause weight loss.  I haven't had to deal with side-effects before, so it took a while to get up to speed on this.  Thankfully I feel really good.

I found the frontiersin.org article very interesting and will be interested to see where it leads.

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

It is good to hear that you have had a significant drop in your CEA numbers. Take that and run with it.

Sorry to hear about the diarrhea. Especially if you can't afford the weight loss.  I'm sure you know how important it is to keep hydrated, as diarrhea can cause problems at the best of times - is there a best of times? let alone when you're in treatment. 

Thank you for the update.  We're thinking of you. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6682
Joined: Feb 2009

Sounds like a promising update, especially with the CEA going down.  See if they can give you something for the diarrhea, as this can also cause other issues, especially if not drinking enough fluids.  Thank you for letting us know how you are doing.  Wishing you continued improvement.

Kim

Subscribe to Comments for "Treatment decision"