Brain Mets, Gamma Knife, more chemo...

[JuneK]

Hi all. I just wanted to give an update on my situation and maybe get some advice about new treatment options.

One week ago Thursday I had Gamma Knife radio surgery on 5 brain mets that were discovered in a recent MRI. I had no symptoms at all – this was just the annual MRI that my oncologist likes to order for lung cancer patients. I’m really glad he did, as one of the tumors was already 1.9 centimeters! Most of the rest were quite small, but I was still very freaked out to learn I had 5 brain lesions all at the same time. Seems the horse is truly out of the barn at this point, so to speak!

I must say I was pleasantly surprised by how easy the whole Gamma Knife procedure was.  I slept through a lot of it, so my memories are somewhat foggy. Recovery was very easy & so far I have had no side effects. The pin sites where the frame was attached to my head were sore & slightly bruised for a few days, but this was very minor. I have been warned it is possible to have side effects a few months later as the tumors die, so I will be on the lookout for any odd neurological symptoms for a while. I will now have an MRI every 3 months in case new mets develop. From what I understand they can continue to zap them whenever any new ones appear. It does not seem to matter how often. Surely there is some limit, but for now they were very reassuring about it. I just wish my lung tumors could be treated this easily! I hope this will be helpful to anyone who has to undergo Gamma Knife surgery in the future.

My oncologist was planning to start me on Taxotere and Cyramza (also called Docetaxel & Ramucirumab) which is the standard treatment for progression after Opdivo & platinum based chemo, etc. But after checking with the clinical trials doc at Emory, both she and my doc agreed I should meet with them next week to go over all trial possibilities. At the minimum, there is a trial for Taxotere/Cyramza/Keytruda with seems to improve survival by at least a few months over the standard treatment. I know that sounds minimal but I figure even a few months helps as there is always a chance for a new breakthrough to come along at any time! Logically it seems like the Keytruda would be a waste of time since the other immunotherapy has already failed. But apparently there is some evidence that the Taxo/Cyramza’s action on the tumors can sort of jump-start the immune system and help the Keytruda to start working again. There is also a trial for TIL Therapy, but apparently it is a good bit more risky. That might be something we save for later if this doesn’t work. Apparently a small percentage of people do great on it, but a good number get worse because it wears you down so badly. I should learn more about all of this next week.

I’m told the side effects for Taxotere & Cyramza are worse than the Carboplatin & Alimta I had last year. Has anyone here been on this combo? If so, would you mind sharing your experience? I know everyone reacts differently and there are no guarantees. But I still find it helpful to hear other people’s stories. Our son is getting married on November 12th. I was so looking forward to it. Now I worry I will be too sick from chemo to attend. Not a huge deal in the grand scheme of things as I can attend virtually, but it's one more thing to make me sad. 

I’m praying we can make a good decision regarding what treatments to pursue. I appreciate any good thoughts or prayers or whatever you are comfortable with in the coming weeks!

Best to all - June

[LouT]

June,

I've had no experience with chemo-based therapies so I can't give any information regarding that aspect of your post.  But I wanted to say that I'm sorry to hear about progression, and happy to hear that the Gamma Knife procedure went well.  I'll be watching your updates and you'll also be in my prayers.

Lou

[Pstar]

June, you are in my thoughts and prayers. Please keep us informed on which therapy you start.

Pam

[Karen_L]

June, 

What mutations are you dealing with? 

I'm glad your gamma knife experience was smooth. I found the whole process smooth as well, and have had no adverse effects.

I don't know the chemo drugs you refer to, I'm sorry.  But I do know that if you tell them you need to be at your son's wedding and NOT be sick, they may be able to work with you to arrange treatments to meet that dream. (My daughter was hospitalized for four months with a form of lymphoma when she was 22. When she announced that she wanted to be out of the hospital for Thanksgiving and Christmas, the oncologist sat down at her bedside and worked out a new treatment schedule. It was awesome.)

When I was doing chemo, the nurses gave me tons of drugs for any possible side effect-- I think I had three anti-nausea meds alone. They can get you primed like that, too. 

As to the treatment options, I'm impressed that your docs are thinking about trials without your prompting. As part of my decision process, I would look carefully at what phase the trial is in and what degree of a new treatment you'd be experiencing. If you were to do a trial, could you move back to the conventional treatment if you needed to? Questions like that feel important. 

Please keep us posted!

K

[Tom Galli]

June,

I'm following your treatments. Stay the course!

Tom

[JuneK]

I have had an amazing turn of events these last few days! My oncologist had ordered more genetic testing a few weeks ago, just to make sure nothing had changed before we started the new chemo. The testing company had delays for some reason. But both my oncologist and my Emory doc agreed we should delay the chemo until results came back.

So last week’s treatment was delayed while we waited. The delay was stressful in itself as the cancer appears to be growing fast now. Then lo and behold, doc called Wednesday evening saying the results were back, and this time it shows I have the ROS-1 mutation! And there is a targeted drug I can take! I almost couldn’t believe my ears. I still can hardly believe it. This mutation is rare – only about 1% of lung cancers are ROS-1. I will be starting Entrectinib next week – my insurance approved it today. It is not a cure, as everyone eventually develops resistance. But there are already 3 other drugs in trials for use after resistance.  

Not everyone responds to Entrectinib, but the response rate is pretty good – something like 70%. Seems it can keep things in check for anywhere from 6 months to 4 years. I can’t tell you how wonderful it is to have my small window of hope opening up a little bit bigger!

This mutation is so rare my oncologist has never had a ROS-1 patient before. So we will stay in close contact with the Emory Winship doc. Whenever this drug fails, she can help get me on clinical trials for one of the newer ones.

Entrectinib does have some bad side effects. I’ve already been poring over the ROS-1 forum. Most say the side effects are worse the first couple of months and then your body starts adjusting to it. Surely it can’t be as bad as chemo, so I say bring it on!

I am puzzled why this wasn’t detected last year with the initial testing. What’s really weird is the KRAS that was detected last year did not show up at all this time. I remember we had problems with failed biopsies and then a sample being rejected for some reason. I believe the KRAS was detected from my blood biopsy. I guess it doesn’t matter now, but wondering if maybe they weren’t thorough enough in the beginning.

Thank you all for your concern and for letting me vent my worries as things have played out. It will be interesting to start this new journey. Does anyone know if there are any other ROS-1 people here on Lungevity?

Best to all,

June

[hillham]

Hi June,

Wow! That's incredible. I also have the Ros-1 mutation. I'm sure you've joined the Facebook group. It's an amazing resource. https://www.facebook.com/groups/ROS1cancer

I'm not the most typical Ros-1 patient because I was stage 3b and had the more traditional treatments (cisplatin and alimpta + radiaiton) in the hopes of a cure. Those treatments have been successful so far and I'm not on any treatment now. I did try Entrectinib immediately after completing my treatments, but since the side-effects were so harsh, I decided, on the advice of my oncologist, to stop. I would have persevered if I wasn't NED at the time. I always hear that as your body adjusts, the effects become much milder. It's also true that many people who have difficulty with one TKI drug do well with another, and incredibly there seem to be quite a few effective drugs. The newest Nuvalent trial drug (NVL-520) seems to be quite effective with very few side effects. We're on the cutting-edge of science!  

Good luck with these next steps! 

Karen

[Karen_L]

Hi June,

Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!

Karen

[JuneK]

Karen H., nice to meet my first Ros-1 buddy, ha ha. Yes I have already joined the Facebook group and have been reading and reading! I'm so glad there appears to be so many resources and support. That's wonderful that you were stage 3 and able to catch it before it spread. From what I've read, Ros-1 is very aggressive and that's why so many of us are stage 4 by the time it is discovered. So many things fall into place when I read about this mutation. It all matches my experience to a T - the tendency for brain mets, everything.

I admit I am a little fearful of all these side effects from Entrectinib that everyone is talking about. But as you mentioned, most people say the first couple of months are the worst and then your body usually adjusts. It is very encouraging to know there are other options if I absolutely cannot tolerate it. My only other concern is the fact my cancer team has never dealt with it before. But I'm sure they have access to good resources, too, and I can always seek unofficial advice from the online groups.

Karen L - "sneaky" lung cancer is right! I picture it as an ever-evolving beast! No wonder it is so hard to tame.

Best,

June

[hillham]

June,

Nice to meet you too! Good luck with the Entrectinib. Everyone seems to react a little differently. Also, as I'm sure you've seen, many people do a remote consultation with a Ros-1 expert like Dr. Ross Camidge in Denver. Good luck & keep us posted!

Karen