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!

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!

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!

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!

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

May the Repotrectinib work until  Zidesamtinib is approved.
 

@edivebuddythank you so much for all the good information regarding radiation necrosis. I'll admit I've had a difficult time understanding this necrosis diagnosis from the beginning. Your story is quite eye-opening. I'm so sorry you had permanent damage. I honestly did not know that could commonly happen. You've given me a lot to think about. I'm going to print out your post for further study & research.
Also, thank you for the taletrectinib info. I've read about that one in my ROS1 group. But the one folks seem to be the most excited about is NVL-520 by Nuvalent. I'm following several people on that one and so far they are having good results with minimal side effects. NVL-520 is the one I will most likely try next if the Repotrectinib fails. My oncologist has applied to get that trial here at Emory, but it will take at least a year. Currently the closest location for me is Nashville, which is not too bad. But I'm praying the Repotrectinib will work at least until the Nuvalent trial is available here.
Thanks again for all the good information! - June
 

All
I think I had stopped posting before this happened (on advice from a lawyer) but it might be interesting for some of y'all 
I was sitting in my OSU recliner in late 21 and had an epiphany. I could stay in that fine recliner, get fat, and just wait or I could do something different. When I say I...my wife is included.
So we sat down and developed a bucket list. It included a bunch of stuff we both desired. First sell our much to big (with the boys gone) house. Buy my most desired car (CT6-V. Check it out if you like cars) and travel. We decided on starting with a cruise to Alaska to see how well I did. Went with some dear friends (one had LC also and has sense past) and had a fine time. I didn't do all the excursions, but my wife did and had a blast.
After that, we decided on a slow trip across the US starting in Washington. Made plans to meet up with friends along the way. Even had lunch with old friends from Seattle at the Mackinaw bridge in the UP of Michigan. We ended in Brooklyn New York where my wifes sister lives. Had my pup Mac with us for the drive.
Then we caught the QE2 in Brooklyn and sailed to South Hampton UK. 7 day journey which was fantastic. Had the widow of my second dad join us for the trip. It was magical.
Then we spent 3 months taking the train around Europe. From Rotterdam to Barcelona and two stops in France. It was a great trip but I learned that Europe is more divided than even the US. Any desire to retire there quickly dissolved. My two favorite visits were to a WW1 battle site in northern france and Normandy. The cemetery"s were very moving places. Tor du Hoc (sp) was astonishing. My parents generation were an incredible group to have accomplished what they did. Also very special was meeting up with a large group of friends from Longview in Paris for a fun night of food, drink and chat.
We then spent the last 3 weeks in England. Being Scottish we had to visit Edinburgh. I highly recommend it if you get a chance. The castle is the best we saw by far. Also, the war room exhibt in London was incredible and wore me out so much I had to rest for two days. We were joined by a special couple. The wife had just survived a breast cancer scare (when we set it up we didn't know if it was a recurrence yet) that turned out to be begnin. What a great week of celebration.
We had such a grand time on the QE2 coming from the US we decided to take it back home. In November. Across the North Atlantic! It was an exhilarating rough trip and I was very pleased to find I do not get sea sick.
Upon arrival back in Brooklyn I decided to drive straight back to Washington. My wife stayed with her sister for a few days and then flew home. It was the perfect end of the adventure for me. Alone in my bucket list Caddy driving as long and as fast as I wished. I enjoyed it immensely.
I can now claim to have traveled from Alaska to Barcelona and back without ever stepping on an airplane!
We did spend a bunch of my kids inheritance but I wouldn't do it any different. Sorry for the long post.
Tom
PS This post does not do justice to the trip. So many stories. So many memories. I have only one thing left on my bucket list. To watch the Lions in the Superbowl live. Is that possible this year? Yah damn right it is!

Taletrectinib currently in phase 2 clinical trials seems to be having positive results for Ros1 positive lungs cancers. Here's a story out of ESMO 2023 from onclive. Then a Link to the trial 
https://www.onclive.com/view/taletrectinib-continues-to-demonstrate-high-clinical-activity-in-advanced-ros1-nsclc
 
https://clinicaltrials.gov/study/NCT04919811
 

@JuneK I'm unfortunately very familiar with cerebral radiation necrosis.  Unfortunately the standard of care is lacking.  Not only lacking but lacking in any medical sense. Standard of care is to rescan in 3 months absent any symptoms. Problem is if you become symptomatic it means you've probably suffered damage.  I had Gamma knife to my tumor resection bed in November 2020.  End of September 2021 scan showed progression or cerebral  radiation necrosis.  SOC  was scan again in 3 months.  We scanned at 8 weeks because my original tumors were not all that well behaved. The day I go to discuss the MRI with the radiation oncologist I drive by myself to the cancer center.  When the RO came in I noticed I had lost my vision to the left.  In the few minutes since parking the car I went from 100% normal and asymptomatic to having left homonymous hemianopsia. ( I can't see left of center)
 
There are no approved treatments for radiation necrosis but there are ways to treat it.  And as any doctor knows cerebral damage is almost always permanent.   Mine is definitely permanent. To this day I'm on Avastin ,(Bevacizumab), vitamin e and boswellia.
 
Initially I was on Pentoxifylline, Dexamethasone, and vitamin e. Why it's not standard of care to prescribe this at the first sign is beyond me.  It's extremely well tolerated,except the Dex, and super cheap.  Without insurance it's about$80 for 3 months worth.  Boswellia I take because you can't stay on steroids forever and it controls the edema.
I believe with every fiber in my body every one of us that have had radiation should have Pentoxifylline And Vitamin e at the first sign of necrosis. Many breast cancer patients get it prophylactically.
It would have cost a few hundred and may have saved my vision. Now it's cost over half a million in treatment.
Hyperbaric oxygen therapy can also work. It's not widely available. We have it here but it 2 hours twice a day for 6 weeks.
Surgery and Laser interstitial thermal therapy (LITT) can also treat it.
 
Make sure your next  MRI is a perfusion MRI.  While not 100% accurate, it's definitely preferable to an invasive biopsy. A perfusion MRI measures blood volume.  Dead tissue has no blood flow so in theory necrosis should have none while tumors require lots of blood flow. The lack of blood volume would point more towards radiation necrosis.
A PET/CT (A PET MRI if you're lucky enough) can also be used.  While normally absolutely useless for brain studies, the PET can also help to distinguish between a tumor and necrosis.  While a tumor is going to be just as GDG avid as the rest of your brain, necrosis will show Hypometabolism. I get them both.  
First sentence in Findings:
Hypometabolism at the site of the treated lesion in the right occipital lobe.
 
 

@JuneK That radiation necrosis around a treated brain lesion is a pain. But it sounds like the lesion itself has been fried? Hang in. Steroids can be awful, but they are miraculous if you need them. 

Thank you Karen..I will be on Oahu in Waianae…my husband rents a beachfront house for 3 months…haven’t been able to join him the last 2 years but am so grateful also that I can this year. Will be there for the month of March and then we will both come home.
Pam

What wonderful news! I was so happy to read this, Rikke! Congratulations and best wishes that your good news continues!

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

Glad to hear that your medication and treatment are helping. I will keep you in my thoughts.

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

Such great news! Very happy for you! Hawaii sounds wonderful. I hope you have the best time!

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

Such great news! Very happy for you! Hawaii sounds wonderful. I hope you have the best time!

What wonderful news! I was so happy to read this, Rikke! Congratulations and best wishes that your good news continues!

June, I'm sorry you're having such a hard time with your treatment. And "hard" is really an understatement for what you've gone through and continue to go through You might want to consider asking for a palliative care doc on your team. Some think that palliative care in terms of hospice, but that is only part of what they do. They can help people with chronic illnesses and/or difficult side effects from treatment find solutions for pain and other symptoms and help improve quality of life, while continuing to treat the illness.
I wish you comfort and healing.

Wow. What a journey.
I am still on opioids (to my primary's dismay) but KP will not prescribe xanex with opioids so they cut me off xanex (the begining of my weight loss!). He asked me to try Cymbalta in place of the xanex and hopefully help the pain. It did nothing for my pain but to my complete surprise it worked wonders on anxiety! Doesn't help my appetite like xanex did but that is minor compared to constant anxiety.
I would give it a shot. Especially if you do have any anxiety. He titrated me up to full dosage over two weeks but it helped with anxiety the very first day.
Best wishes in your struggle. I hope the new drug works and the pain subsides. Constant pain is dilapidateing. I have been told no blood thinning over the counter pain meds because I am on blood thinners for life because of a PE. I cheat when the pain gets to bothersome.
Tom

Hi all. Had my MRI of brain which showed “significant reduction of lesion”. Also had CT of chest/abdomen/pelvis which showed stable lung nodule and adrenal gland nodule so I am good for the next 3 months and can go to Hawaii on vacation the end of next month. Woo hoo!
Pam