Dad has ROS mutation

[LilyMir]

Hello all, it has been ages since I posted, I miss this forum. I hope you all are well! I am doing well so far, next scans coming up in 2 weeks and scanziety at peak. I have been unable to post as my mental health has been reeling. Too many family members suffering serious health issues, to say it was extremely hard is an understatement. Latest my dad, 78, has been diagnosed with lung cancer, adenocarcinoma ROS1 mutation. Any of you has this mutation? I am gutted. You may remember my own adenocarcenoma is EGFR exon 19. I am in deep shock thinking irrational things like fearing for my son having mom and grandpa having lung cancer and thoughts of future risk for him. I know ROS1 is an aggressive mutation but also know there is targeted therapy. Dad has other lung issues due to previous open heart surgery, fibrosis and smoking damage so probably surgery is not an option though his one lone module is small, under 2cm, no other evidence of cancer. I have no idea what to tell him! Any tips?

[edivebuddy]

Do not let the term aggressive fool you.  While in the ICU for because mine for more aggressive than any seen or heard of at about 2 am an oncologist sat down beside me after starting my first chemo.  He said he knew I had to be scared with the days events and it was indeed more aggressive than he would have ever imagined cancer could be.  He then said in his experience aggressive Cancers that respond to treatment tend to respond just as aggressively as they grew.  He was so right.  My cancer responded faster than they thought was possible.  After my first infusion of keytruda is was 12 days and an metastasis on my neck was 100% gone.  I could see the one in my neck was either gone or at least too small to notice. It was bigger by an two hands held in prayer 🙏.

ROS1 can be aggressive, but it's also associated with better overall survival.  Alimta, plus chemotherapy with addition of a TKI should be very very effective  since ROS1 positive Cancer tend to respond well.

 

Good luck to you and your family.  Hopefully you guys get a break and some good News soon.

 

 

[Tom Galli]

Lilly,

So very sorry to learn about your dad's diagnosis. My only suggestion is a PET scan to confirm the single nodule as the only metastatic activity, then precision radiation to zap the nodule. Precision radiation can be as effective as surgery without the complications of surgery.

Stay the course.

Tom

[Livin Life]

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....

[LouT]

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

[JuneK]

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!

[Chuck K]

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

[LilyMir]

Hello everyone, it has been a harrowing few weeks for my dad. Between a PET scan in late April showing a single small well defined nodule, an early June PET repeat showed extensive spread (some in the family suspecting this could have been spread during biopsy!). I am now told dad has Lymphangitic Carcinomatosis which apparently means the adenocarcinoma became an infiltrative cancer in both lungs. I am told that ROS1 positive result is preliminary and usually wrong and a more extensive result is still pending.  No way to radiate cancer. Dad is too weak for Chemo so that is out too. EGFR and ALK not present, only slim hope ROS1 is but not expected and even then the treatment is not available easily where he lives abroad. Immuno was dismissed since dad's condition is very poor, he needs massive oxygen help to breathe. They say dad is too sick for any trial to take him on.  I am absolutely CRUSHED. They are suggesting palliative care but I am not ready to give up so soon. Anyone has heard of any new developments that can apply to dad's case? Maybe a trial where they take very sick patients? I am not ready to just let him die and try absolutely nothing.

[LouT]

Lily,

I do not have any knowledge of new treatments that can help your dad, but I just wanted to let you know that your and your family are in my thoughts and prayers.

Lou

[Livin Life]

Sending support and warm energy to you and your family.  Please keep us posted, Lily.....

[Pstar]

Sending thoughts and prayers to you and your family. Hoping something can be started.

[LilyMir]

Thanks for the wishes everyone! Little update: my dad's PDL 1 turned out to be 70% so they started him immediately on Keytruda. Anyone has experience with this drug? has anyone heard this drug can help very sick patients with infiltrative metastasis in both lungs? I recall @RJN maybe had it? Thanks!

[Pstar]

Look at post from edivebuddy on May 19th in this thread. He said that his metastasis responded very fast on keytruda…hope your father will too.

[Karen_L]

Thinking of you, @LilyMir. Hang in.

[RJN]

Apologies @LilyMir - I was away on leave and then buried in work, so didn’t check in. Very much keeping my fingers crossed for your dad. How has he coped with the treatment so far? With a PDL of 70%, there is a good chance it’ll work. Mine was 60% and worked a treat for me, as you know. I do wonder why he hasn’t been offered entrectinib, as a targeted ROS1 drug may well be even more effective. I have a couple of LC buddies on this, and it has also worked well. The other thing to discuss with the team is a combo with radiotherapy, which has proven effective for many and is becoming standard treatment in the UK (by stealth, as oncologists see good results, but not a formal NICE recommendation yet).