JuneK Posted January 15 Share Posted January 15 Hello everyone! Sorry I’ve been away so long. I hope everyone enjoyed their holidays and hope you are all doing as well as possible in your cancer journeys. The last time I posted I believe I was quite excited over the discovery of my ROS1 mutation. I was so happy to have targeted therapy options! It sounded so much easier than chemo. Just take some pills every day, they said. It will be great, they said! Little did I know I was just in for a different sort of roller coaster ride. Everyone is unique, and unfortunately my body does not seem to like these ROS1 drugs at all! The first drug recommended to me was Entrectinib. I started taking it in early October. On my first attempt I ended up in the emergency room with a severe allergic reaction in the form of a nasty, rapidly spreading rash with fever, etc. Had to come off the drug & take steroids to resolve the rash & recover. After that we tried the drug again at one/third of the regular dose, which is the normal protocol. Within a week I had to be admitted to the hospital with a DILI - Drug Induced Liver Injury. My Alanine Aminotranferase enzymes were 2,500! (Normal is 52). I Was in hospital 3 days before my numbers started to come back down. Now that drug is off the table and no longer an option for me. Luckily by mid-December my liver had healed itself & was completely back to normal. During all this waiting I had some minor progression though, which is always worrying. I have since received approval to try a new TKI designed for ROS1 patients called Repotrectinib. It was just recently approved by the FDA and is supposed to be not quite as harsh as the first drug I took. This is day 18 for me on the newer drug. So far my liver is tolerating this one (major relief!) but it has been a rough ride. I am in so much pain! First week was ok, but 2nd week brought extreme fatigue, fevers, & terrible pains in my hands, feet, ankles, knees, etc. The pain is worse at night - almost unbearable at times. We’ve already cut my dosage in half but no relief yet. Most people say the pain & other side effects of Repotrectinib ease up in a few weeks as your body gets used to the drug. I sure hope that is true! Since they are so worried about my liver sensitivity, I have to be very careful about using painkillers. We don’t want to do anything to aggravate the liver again. I feel like I’m in some sort of nightmare. I can’t let this drug fail or the cancer will keep progressing! I’m just slowly eking through each day, trying to get through the pain & fevers. Hoping that one day I’ll wake up & things will be better. Next appointment is this Thursday. I wonder what they will recommend. I have a Cymbalta prescription but have been afraid to try it due to the harsh liver warnings it contains. I’ve started taking a Tramadol to get through the night but it just takes the edge off & doesn’t really stop the pain. This seems like nerve pain so I suspect the Cymbalta might work better. Has anyone here used that? Just trying to stay strong and tough it out in hopes that I can eventually tolerate this drug. And praying that the drug puts a stop to my cancer growth! My ROS1 group has countless stories of folks who have taken this drug for months and even years with good results & no ill effects. My dream is to be one of them some day! Take care all! - June TJM, Tom Galli, LouT and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 17 Share Posted January 17 June, What a terrible journey you are on! I only had some drugs in 2010 (colon cancer), my lung cancer treatment (up to now) was only surgical. I know there are others taking similar drugs as you and I look forward to their experiences here as perhaps they may help you to find some symptom relief as well as knowledge to help you get through this. My prayers for you are to receive the benefit of the drugs with few or no side-effects. I realize that is a big ask with some of these treatments and I also realize that everyone reacts to them differently. I have taken Tramadol for kidney stones and I agree that it only does "take the edge off". I understand that the normal pain protocol is the lowest dose that achieves a reasonable pain reduction, but if you need something more in order to rest (a pretty important component of your recovery) then please speak up and let the doctors know that. Please continue to keep us updated. I'm hoping to see a future post where you are doing better on all fronts. Lou Scruboak and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted January 18 Share Posted January 18 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. Tom Galli, LouT, Scruboak and 1 other 4 Quote Link to comment Share on other sites More sharing options...
TJM Posted January 18 Share Posted January 18 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 Tom Galli, Scruboak, JuneK and 1 other 4 Quote Link to comment Share on other sites More sharing options...
JuneK Posted January 26 Author Share Posted January 26 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. Tom Galli, LouT, Scruboak and 3 others 6 Quote Link to comment Share on other sites More sharing options...
Pstar Posted January 27 Share Posted January 27 Glad to hear that your medication and treatment are helping. I will keep you in my thoughts. JuneK and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 4 Share Posted February 4 @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. LouT, Tom Galli and JuneK 3 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 4 Share Posted February 4 @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, Pstar and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 5 Share Posted February 5 @edivebuddy, thank you for posting this. I'm saving it for future reference. LouT 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 6 Share Posted February 6 On 2/5/2024 at 10:12 AM, Karen_L said: @edivebuddy, thank you for posting this. I'm saving it for future reference. Hopefully you never need it. LouT 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 6 Share Posted February 6 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 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
JuneK Posted February 14 Author Share Posted February 14 @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 LouT 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 14 Share Posted February 14 May the Repotrectinib work until Zidesamtinib is approved. JuneK and LouT 2 Quote Link to comment Share on other sites More sharing options...
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