JuneK
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Posts posted by JuneK
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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.
- tgif i guess, Tom Galli, Scruboak and 3 others
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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
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Such wise words Karen - I agree with you completely! I sometimes find myself slightly annoyed when a well-meaning friend tells me I have to remain positive. My first thought is always, "well, that's easy for YOU to say". It's just one more thing to feel bad about - am I a failure because I struggle to remain as positive as I should while fighting this disease?
GBJ - I experienced a recurrence this summer so I know how devastating it can be. Especially when things had been going so well for a while. I hope that's not what is happening with you, but if it is, I will pray they find the best treatment options for you going forward.
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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
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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
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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
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@Sallysh I am so sorry to read about your situation. It appears we may be in the same boat. I hope not, because it is beginning to feel like my boat is sinking! I just found out I have brain mets. 😔 I meet with the radiologist on Thursday. I assume this probably means gamma knife, but will know more after my appointment. Another PET scan is scheduled for next week to see if there are other progressions in the body. I'm honestly more afraid of the PET scan results than the brain met treatment.
I sincerely hope the U of Michigan can come up with more treatment options for you. I have met with Emory Cancer center and they are helping me look for clinical trials. It is overwhelming. I know lung cancer treatment has come a long way, but I sure wish they could figure out why immunotherapy fails so often. I even had a favorable PDL-1 score! I recently read an article suggesting gut health can play a roll. Now I wonder if something as simple as taking the right probiotic could have made a difference. All the 2nd guessing can drive you crazy and I know it is pointless. I try not to do it, but can't help it at times. Can't help but wonder, what went wrong? Is there something I could have done differently?
Praying for both of us! And all others on this site, of course. Please let us know what you find out.
{Hugs} June
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In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V.
Here are a couple of links I hope some will find interesting:
Best to all, June
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All the best to you, Rikke! I'll be sending many prayers and good vibes for a successful surgery. Just think how awesome it will be to get the last of the cancer out. I don't want to minimize your concerns, but I would happily trade a lifetime of steroids for no cancer in my body!
Best,
June
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Thank you both, Lou & Tom. I especially appreciate your thoughts about courage, Tom. Sometimes I feel as though I'm some sort of "failure" in that regard. I do try to fake it in front of others, mostly for my family's sake, lol. I feel a little better today - I think just the act of writing out my post helped me in some small way. I guess sharing the burden lightens it a wee bit...
Thanks for listening. I have a feeling I will have many questions in the coming weeks.
Best to all,
June
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Struggling mightily here with some bad news from my recent PET scan. I think it’s all the harder because our hopes have been so high recently. After chemo & nivolumab last year, an upper right lobectomy in December, and continued nivolumab every 4 weeks since, things seemed to be going well. My surgery recovery was quite difficult, much more painful & drawn out than I expected, due to what they think is extensive nerve damage. I still have major discomfort from it, but have been doing my best to learn to deal with it. Had a CT scan in late February where nothing abnormal was noted other than a small pleural effusion. Went into this PET scan a couple of weeks ago with high hopes.
Blam, now the bad news. A completely new area of cancer, now on my left hip. Even worse, there are “areas of concern” in my right chest. Nothing definitive, but some areas of SUV uptake between 3 & 4, which they say could possibly be leftover inflammation from the surgery, but taking into account the new mets to the hip, most likely the start of new progression. I am beyond devastated. I felt like the immunotherapy was my one chance for a miracle, and now it seems to be failing. Even if not a cure, I had hoped to be able to get a few good years out of it like so many do. I have no targetable mutations to fall back on. Really struggling to fight off the despair I am feeling.
Of course my oncologist says not to give up hope. The tumor board reviewed my case on Tuesday & recommends to radiate the hip lesion as sometimes there can be “one-off” breakthrough mets. Because of the small chance that the other readings could be inflammation they want to wait another few weeks, then do another scan. They want to be absolutely sure before abandoning the Opdivo. But if there is truly more growth it will mean discontinuing Opdivo, then on to more chemo, a different kind this time.
In the meantime I have an appointment with Emory Winship Cancer Institute next Friday for a second opinion. My oncologist also suggested we start researching clinical trials.
I've waited a while to post this, in hopes that I could rally some courage and be more upbeat, but that hasn't worked out, lol. I don't even know what advice I am seeking. Searching for courage but having a harder time finding it this time around. 😔
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I am so very sad to hear this. Justin was one of the first people to offer sympathy and support when I first joined this group last year. He was always so kind and empathetic. Izzy, my heart aches for you. I can't imagine the pain you are feeling. I hope you can take some comfort in knowing he is now at peace and also in knowing how much he meant to so many people. He will never be forgotten.
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Hi Justin,
Last August thru October I had 4 cycles of Carboplatin & Pemetrexed (Alimta) & Nivolumab (Opdivo) infusions taken every 3 weeks. My main issue was nausea. It would usually start 2 days after treatment and be bad for about 3 or 4 days. Then I would be so weak from the nausea days it would take another few days to eat enough to start getting my strength back. By the third week I would be feeling much better. Just in time for the next treatment! So for me the symptoms were worse days 3 through 5 & gradually improved after that. I’m not sure why your peak would be day 14. Maybe my dosages were different from yours? Fortunately, I never got mouth sores, but they told me about a special mouth wash if that happened. I did get terrible dry mouth from some of the anti-nausea drugs. They always told me to drink as much water as possible. I got so tired of drinking water but I do think it helps to flush out some of the bad stuff. It is so hard to drink it though when you have nausea. My goal was around 84 ounces per day & I usually made it.
Zofran helped a bit with my nausea but was just not enough. They added Compazine and then later we tried Olanzapine. The Olanzapine helped the nausea but made my blood pressure go so low I passed out twice & had to stop taking it. I woke up once on the floor & my poor husband was so freaked out he had called the paramedics. They almost made me go to the ER due to the low blood pressure, but it gradually started coming back after drinking a big electrolyte drink. So we never did find a perfect solution for the nausea - the Zofran made it just bearable & I basically toughed it out because I gave up on the other drugs by then with their weird side effects. Luckily it only lasted a few days of each cycle, but those were miserable days. I learned to take Miralax as soon as I took any nausea meds and that helped prevent the terrible constipation. (It only takes one failure to learn that lesson, oof!) The rest of the time was just dealing with fatigue, etc. Of course the overall anxiety of everything also wears you down.
Sorry, that's probably not really much help. I do hope you improve in the next week. Just remember it's all the price for a good result and in the end will be worth it! Looking back on the treatment it just seems like an unpleasant dream. All the best to you, Justin!
Take care,
June
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Hi Justin,
I am so sorry and sad to read about all that you are going through. This treatment does sound scary (like so much of this cancer mess we have to go through) and with so many unknowns it makes it that much worse. Just remember that so many have been through this before you and survived, so maybe that can help keep the hope going. Please know you are in my prayers and I am wishing the best for you every single day. I'm doubly sorry that there are horrible people who have made added stress for you. I can't imagine being so heartless, what is wrong with people? But just know we are thinking about you every day and rooting for the best outcome possible. I hope the side effects do not get too bad and begin to improve soon!
Take care, June
- LouT, Izzy and Justin1970
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That is such great news, Congratulations!!!
- LouT, Justin1970 and LilyMir
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That is great news, very happy for you!
- RJN, LouT and Justin1970
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That's wonderful news, Susan! Congratulations, I am very happy for you. It's posts like this that continue to give me HOPE! 💗
- Susan Cornett, Justin1970 and LouT
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Hi everyone. Sorry to take so long to check in. My upper right lobectomy was performed by Da Vinci RATS (Robot-Assisted Surgery) on December 8th, which was ten days ago. The surgery took 4 and ½ hours, which was longer than expected, but my surgeon said overall it went very well. He said the tumor had basically turned to a mushy mess (presumably dying from chemo & immunotherapy), so he had to be very meticulous to get every bit of everything. There was a lot of sticky tissue that had to be teased apart, etc. which made for what he called a "tough" surgery. He had been a little worried by how close the tumor was to the other lobe, but upon inspection he verified it was confined to the upper, so he did not have to cut into the middle lobe at all.
I did very well in the hospital. My surgeon used Exparel (bupivacaine) which is injected into the incisions and is designed to release numbing medication over time. This worked very well for me. Even though I had pain, it was nowhere near as bad as I expected for the first 2 or 3 days. My whole mid-section was quite numb for a long time. It did hurt to breathe deep, and to cough, but the pain was manageable. I truly hated the spirometer those first few days though! It was very difficult to pull in much air. But I was able to walk around pretty well – in fact they had me up walking that very first evening. I know that is common, but it still amazes me!
The day after surgery the nurse noted there was very little drainage coming from my chest tube, so they were able to remove it around noon that day. I didn’t feel a thing when it came out – again probably due to the numbing agent that was used. Since the chest tube came out a little early, I was able to go home on the morning of day 3. Unfortunately, day 3 was when the numbing med began to wear off! So the pain was actually much worse after I got home than when I was in the hospital. I had to take Tramadol to be comfortable enough to get any sleep. The next few days I took mostly Extra Strength Tylenol, a muscle relaxer and/or Ibuprofen during the day, but had to use Tramadol at night and other times when the pain got worse.
I've used the spirometer religiously (must admit I am so tired of that thing!). However, I woke up Wednesday morning feeling like I couldn’t get my breath. I was having more trouble breathing then than at any time after the surgery. I also had developed a bad sounding cough (there was a weird little rattle to it). Just walking across the room made me very short of breath, to the point I became anxious about it, which of course made things worse. I called the drs office and the nurse recommended I get a chest x-ray, just to make sure all was OK. So I went in and got the chest x-ray Wednesday afternoon. They called Thursday morning and said everything looked OK. My breathing slowly got better Thursday and by Friday I was breathing easier and past the “anxiety” stage. I still don’t know how much of all this was because I worked myself into a state of anxiety or if there really was something going on, but I just felt especially bad those two days. When the cough got better, the shortness of breath got better, and by Friday I was feeling much better overall.
So here is it Sunday evening – 10 days since my surgery. I have to say I have more pain and swelling than I thought I would have at this point. I had a lot of abdominal swelling after surgery, and it has not gone down a whole lot. I feel like there is an incredibly tight band across my upper abdomen. Overall, I am doing OK, but I think I wasn’t prepared for the healing process to be this slow. I still need to take at least one Tramadol a day to get through it well and to be able to do my light walking and other exercises they want me to do. I think part of my issue was expectations - I had read many comments saying this surgery was not really all that bad, so then it turned out to be not quite as “easy” as I expected. I just did not expect to have this much pain & discomfort after a whole week. I realize everyone’s case is different though. The doctor did say it was a difficult surgery in that it took so long to clean everything out. I also read that the healing process can be slower if you are over 60, which I am.
So, in summary, I would say that the first few days after surgery were easier than I expected, but the following week at home was a little more difficult than I expected. I’ve had to learn to be more patient with the whole process. The nurses I’ve talked to say a slow recovery is very common, and of course not everyone heals at the same pace. My next appointment with the surgeon is on December 27th. Hopefully by then I will have improved and he can put my mind at ease. I will say that when I take the Tramadol, I am pretty comfortable. I had just thought that by now I would be getting by on Tylenol & Advil! I could have sworn I read that somewhere, lol.
Most of all, I want to say how thankful I am that I was even able to have this surgery. And I am thankful to still be here for one more Christmas!
Best to all,
June
PS - I love my surgeon, he is talented, caring and kind. If anyone in the Atlanta area needs a recommendation, I would not hesitate to name him. He apparently has a great reputation. Just contact me.
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Well tomorrow is the big day! I will have my lobectomy in the morning. Upper right lobe. I think I am ready - a little nervous right now, but not too bad. Getting ready for bed now. Not sure how much sleep I will get - we have to get up super early and be there by 5:30. I never sleep well when I have to get up that early, not to mention when facing surgery! Thank you, Lou for directing me to the "tips & tricks" for lung surgery. My surgeon's office also provided a really nice booklet with advice for all aspects - pre, during my stay, and for recovery. Also, thank you to all who have posted their experiences. I've noticed there seems to be a wide spectrum of levels of difficulty people have and of recovery periods. Hopefully in a few days I will be able to give you an update. Crossing my fingers that all goes well! 🤞
June
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Oh Rosie, I am so sad to hear that the immunotherapy did not work for you. This is just one more of so many awful things I hate about cancer – it is so damn unpredictable! Sometimes I feel like a lot of our treatments are just trial and error. Since I had combination chemotherapy and immunotherapy, I honestly don’t know which contributed the most to my tumor shrinkage. Have they said anything about doing radiation therapy? It seems like a lot of people do that simultaneously with chemo and have good results. I know there are a lot of factors that go into these treatment decisions that I do not understand, but just throwing that out there.
That must have been scary and awful for you to be in the hospital away from your daughter. But you got through it! And I will send many prayers for you for the strength to get through this chemotherapy and for it to be successful! I’m sorry you are having such a tough time with it. I had a hard time with nausea during my chemo, but fortunately did not have much pain. It sounds like Judy has some helpful recommendations for you in the post above.
Many prayers to you, Rosie! Hang in there – I hope things get better soon!
June
- Justin1970 and LouT
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Challenges on my ROS1 journey
in MEMBER UPDATES
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@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