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Jesse L.

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Jesse L. last won the day on May 10

Jesse L. had the most liked content!

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  • City
    Two Rivers
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  • Country
    United States
  • Gender
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    Lung cancer patient/survivor
  • Interests
    Live in the country, fishing, hiking, walking, home improvement

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  1. Glad to be of help... And you are right, I'm not receiving radiation at this point as well. However, that doesn't mean it isn't in the cards. On 6/7 is my last chemotherapy infusion, then on 6/17 I have a CT scan with contrast, then on 6/20 I meet with the radiation oncologist, and then finally on 6/21 I have a telephone interview with my oncologist. The schedule of appointments above kind makes me want to question a few things... Namely, why am I meeting with the radiation oncologist at all if the chemotherapy is supposed to take care of any possible vestige of cancer still left in my body? Understand that following my surgery on 2/25, scans indicated no discernible cancer lesion anywhere in my body. So, what are they telling me beforehand...that chemotherapy doesn't work? There are two possible scenarios to answer the question and I've been given somewhat advanced warning of both. 1. There is the possibility that the chemotherapy I've had hasn't worked. While I consider that remote, I've heard of it before. In any case, if that happens then any growth that may be found will be small and thus more apt to be easily treated by radiation. Of course radiation treatment is a funny animal; the growth has to be accessible enough where radiation will not adversely affect surrounding healthy tissue to such a degree that the treatment is worse than the cancer. 2. Or...if there is still no discernible cancer within my body, then no radiation will be needed. You have to have something to radiate and if there is nothing there, there is nothing there. However, as per standard practice, following the scan on 6/17 I will be on an enhanced scan schedule of every three months for the first two years, every six months for the following two years, and finally every year again starting in the fifth year. If nothing is found, then all the better! However, if something is found given the short timeframe, then most likely it will be small and as such much easier treated. And given the placement, most likely it will be treated with radiation. So, a meeting with the radiation oncologist is logical and pertinent with respect to what may happen in the future, rather than with any current situation. The high rate of recurrence is the elephant in the room and I get that every step will be taken to address that. As I stated in another post, the word "cure" is not applicable here. In my opinion "cure" means "don't ever have to concern or worry about that ever again". Even if its a one off, there will always be the chance and that will always be in my head now. So, NED (no evidence of disease) is the best it gets. That's what makes cancer patients truly survivors, rather than just ex-cancer patients. Given what any cancer patient goes through to be a SURVIVOR, it is not only noteworthy but praiseworthy as well. The fight against cancer is winnable...choose to be a winner!
  2. Believe me when I state that LexieCat has it spot on... I've read of many who respond very well to targeted therapies and a few others not so much. For as much experience that the oncoligist has, even he can't for sure predict how long a person has. Everyone reacts differently, even with the exact same treatment. That's what makes cancer such a frustrating devil to deal with; there is no absolute "if this, then this will happen". All we can do, patient or caregiver, is hope for the best that can happen. I imagine that may sound kind of weak, but in fact if anything it is the opposite. If you are able to handle whatever may happen in the future then you are satisfied with life. None of us come with guarantees so enjoy every minute; they are precious.
  3. Just another word from me. I am 64 yrs. old and in the process of adjuvant chemotherapy treatment for stage 3a lung cancer. I had VATS surgery to remove my RLL in which the one and only small tumor (1.8 mm x 1.2 mm) I had was residing. Now, even though no growths, lesions, or even any noted possibilities of cancer showed on any subsequent scans, that does not mean I am cured. For what it's worth, the high chance of recurrence will mean most likely that I will never be "cured". Therefore, in my opinion, that word "cure" is not exactly a word that should be associated with lung cancer. Even if most likely after my chemotherapy there is still no sign of notable cancer, I will be on a schedule of scans every three months for two years, then every six months for the next two years, and then finally back to annual scans starting in the fifth year. And that is if they continue to find nothing... If scans indicate anything at all, treatment will start all over again and so will the enhanced schedule of scans. Of course the enhanced schedule of scans is to catch any possible growths at the earliest stage where it is most easy to treat. Everything in this paragraph is pretty much standard practice for every lung cancer patient and there is nothing I've noted so far that indicates "cure" as in "don't ever have to worry about this anymore as it will never happen". However, with the above being stated, cancer can now be treated and managed as never before. Many people on these forums are living much longer and fuller lives despite some very bad life expectancies. Some even get to the point of NED (no evidence of disease) which is as good as it gets, but that doesn't mean cancer can never come back. It just means a person doesn't have it now. The above is not meant to scare you nor anyone for that matter. It is meant to let you know that there is hope now for a future of some kind for as long as anyone is allowed to be on this earth. Not a single one of us has any guarantees about how long we'll live, cancer or no. So, stay positive, stay comitted to life, and learn all you can to allay anxiety and fear. Make the most of every day... I've often stated that the older a person gets the more important "time" becomes; even more important than money. Stay in touch...we'll help any way we can...
  4. I was given an hour long lecture about the port when I had it installed and they were very clear on many fine points: 1. Only skilled medical professionals may use the port... everywhere I've gone so far to include the ER has used my port, but then it was told to me at that same ER that not all medical professionals are trained in its use nor are certified to do so. I had no idea it took a certification to be able to use it...seemed pretty straightforward to me?! It just so happened that my ER nurse was an oncology nurse at one time and therefore she knew how to use it. When she did so however, she did admit that her certification had run out, but she accessed the port with no problems anyway. 2. The port works very well both ways... The caveat is that that there is a process in the use of the port. I suppose that's where the training in its use comes into play. Yes, there is flushing going on and more than once in either a draw or an infusion. 3. The port must be flushed every six to eight weeks whether it is used for any other purpose or not. I've had some places say six weeks and others say eight weeks. I guess just know that it has to happen... 4. The average time that any one person has a port is two years. I would have thought that would be longer, but I guess that is not so. No reasons were given for port removal other than it was no longer needed. That's all I know...
  5. Well, actually at this point in this cycle is the good days. My next infusion date is 5/17 so as of 5/19 or so it's going to get dicey...again. But for now it's great; good energy, good appetite, and on and on. Mark my words you'll feel good too. I recommend to do some planning for when it's not so good. Make sure you have crackers (soda, graham, animal, etc.) on hand to stave off nausea. Sure they'll give you anti-nausea meds but you want to try and stay off of them because they cause constipation too. But just in case you have to take them, make sure you have stool softeners, Mira Lax, and maybe even Metamucil as well. You'll also want to eat a lot of little smaller meals or snacks throughout the day rather than any big meals and stay away from spicy food altogether. When it comes to exercise, do what you can, but don't push it. I've been told that overall its better on a person physically if they at least move somewhat, even during the bad days. As for me, during the good days I don't notice much difference from before chemotherapy. Also, relax when you need to, even to the point of taking a nap now and then. Your body will need that too. You won't feel good during the bad days...of that I can assure you. But know that you'll notice a big difference between a bad day and a good day. You will get through this. I promise...😆
  6. I don't know what to say excepting that I'm thinking of you and sending you the best of thoughts in handling your current treatment plan. For me I didn't know that I could possibly have such bad indigestion...like nothing I've ever had before!! It is just awful!!😝 Just got to get through it though...that's the way it is...
  7. I know it seems like it's easy for any of us to say out here, but believe me when I tell you that you will be fine. Honest, it will be OK!! Most everyone out here has had chemotherapy or is having it now and there's lots of us that have had radiation therapy as well. The important point of this is that we're still kicking and doing what we need to do. And if we can do it, so can you. So, I'll admit that side effects can be harsh at times, but the rough periods aren't for long and you will feel better soon. To give you an example, currently I am on four, 21 day cycles of Carboplatin/Alimta infusions. I've got two down and two to go. For me it's from about day 2 to day 8 after infusion where my stomach is finicky, the fatigue can be bad, and I'm just not right at all. The rest of the days are fine... Most likely your side effects will be different, but know that they are manageable. Just make sure that you keep your medical team informed as they have a number of suggestions, methods, drugs, etc. to help you handle those side effects. What with the laundry list of side effects they throw at a person right from the start, I certainly had my misgivings before I started chemotherapy as well. However, you're way ahead of the game though by being relatively young and healthy. You will be fine and you will come out of this just fine too!!😆
  8. Hello from me as well...so sorry we have to meet this way, but hey, that's the way it is. You may be surprised how much your targeted therapy will make a difference. I myself have no actionable mutations so excepting for missing the possible side effects, I kind of envy you. That being stated, I have heard good things about Tagrisso. I really do wish you well on your therapy!! Stay in touch and let us know how it goes for you...
  9. I wish you well with your initial treatment plan and the follow up with your actionable mutation. As LexieCat states, it's always better when the plan is in place and then you've started it. Now, I'm not trying to throw some rain on your parade, but I will tell you that chemotherapy will put a damper on your usual vigor. And please prepare for the side effects as best you can; they can be harsh as I'm learning myself... Before covid19, I'd go to Planet Fitness three times a week for an 1.5 hours of weights and a half hour of cardio, but now I'm relegated to walking my neighborhood on the country roads that I live on. Before chemotherapy I'd walk six to seven miles a day without a problem... Now, on the good days I get four to five miles in and on the bad days there are maybe only two days of those that I can get in a mile or two. So, plan on being down, but know that you will perk up too...eventually. It's up and down as you will learn. Stay positive though; cancer is a long and involved chess game that can be won nonetheless!!😊
  10. There you go... Now mind you, I kind of thought that's what would happen. You'll still get the Carboplatin, but it will be under intense care. FWIW, they were originally going to give me Cisplatin, but due to the increased side effects (otoxicity-quite possible loss of hearing), they changed it from Cisplatin to Carboplatin before my infusions were to start. When I looked up the difference between Cisplatin and Carboplatin, the information I got was that Cisplatin had a few more possible stronger side effects, but was about one to two percent more effective than Carboplatin. However, Carboplatin is so close in its effectiveness, that nowadays it is usually the go to drug for platinum therapies. If I were you I still wouldn't be just to worried about it...you'll just have to get used to a nurse staring at you like a hawk and monitoring everything about you while you get the now longer infusion. In a way it's kind of creepy, but on the other hand it is the best of care. And something you just have to do... Is it really any different than all of this combined? Not really...just another minor inconvenience is all. Take it easy and please relax...you'll be fine. There will be far too many eyeballs on you (👀, 👀, 👀) for there to be any other outcome... Stay in touch...
  11. I too had to read up about what Carboplatin desensitization is...I had never heard about it before, but I guess there is always something else to learn. In any case, I do remember my first infusion on 4/5 and how closely they watched me every second that Carboplatin was being put into me. It was kind of unsettling in that the nurse sat not four feet from me and I swear she never blinked once during the entire 30 minute infusion. When I asked her why she was staying so close and eerily staring at me, she told me that some folks react badly (allergic?) to Carboplatin. Well, other than the expected later side effects, nothing happened. Apparently in your case, something did happen. According to what I read about desensitization, the same Carboplatin is infused into you, but it is done over a number of consecutive days instead. Now, Tom above did state that you may ask for an alternative to Carboplatin, but I doubt whether your oncologist will do that. At least not without trying alternative infusion techniques first. But then who knows... I'm not a medical professional. If anything I wouldn't worry too much about it. Given that "desensitization" exists means thst others have needed the special care that you will get. In other words they'll figure it out for you to get the same chemotherapy effects you would have gotten otherwise. Other than that I hope everything is going well for you...stay in touch and let us know how it works out. 😆
  12. Quite actually my recommendation for what I know is a combination of diet change, exercise, and perhaps Lasix if needed (most likely). Doing nothing is just begging for a bad outcome on your other bodily parts and functions. There is good information on the Web about foods that are best to eat to minimize edema or if there is a dietician associated with where you get your care you may want to consult with that person. I also couldn't emphasize enough the importance of exercise to keep the system moving so to speak. Lots of folks have lots of reasons for not exercising, but you really should be doing that. However, above all consult with your medical team before you begin. Understand that no one will make you nor expect you to run a marathon in a few months, but the benefits of even a short leisurely walk are well worth the effort. As for myself, I'm currently on a regimen of chemotherapy and I'll admit on my bad days I have a hard time doing much of anything at all. However, on my good days which is about two/thirds of the time I'm walking as much as four and maybe five miles a day sometimes. We're meant to move so that's what I do. As to lasix, I'm with Rower in that those drugs are not a one size fits all. From day to day depending on your particular food intake, your size and weight, and even your activity level your need for them will change. It's tough to speculate what you will need drug wise to keep the edema at bay. I would imagine it best then to keep a kind of regular schedule if possible so as to predict how much you need. Oh, and you might want to try some compression socks too...they actually do work to some extent. Other than that all I can say is I understand that it's tough to have to address all this c**p when you're just trying to win your cancer battle, but that's the way it is. And I can fully understand your pain. My cancer has led to the additional development of Deep Vein Thrombosis (DVT) and now I'm taking pills for that too. We all got to make more changes than we want to for this nasty, diabolical, and unforgiving disease. I wish it weren't so...
  13. Hey Amber... so glad you found the forums! We may not be medical professionals, but with all the people on this website, you're bound to find comrades in arms against whatever cancer you're fighting. No doubt about it SCLC is a particularly tough opponent, but it's a fight you can win. If anything else at the very least you will live a longer life. You'll note they started treatment right away which is par for the course with SCLC. Then they have a plan after chemotherapy with the radiation too. And then who knows after that; perhaps your cancer will be all but gone after that's all done. And then there's the new immunotherapies for SCLC... The point of the above is that you just don't know how it's going to turn out ahead of time and speculation is a futile effort at best. All I can state is be positive, stay strong, ask questions of everyone, and learn all you can so you can become knowledgeable enough to be your own best advocate. As for myself, I'm on chemotherapy now just trying to get over the "bad days" from my second round in a scheduled four rounds each set 21 days apart. For me it's the nausea, stomach issues, and fatigue that sets me back, but fortunately that only lasts for the the first seven days after the infusion. Currently I'm on my fifth day after infusion and it's a toss up between upset stomach and a horrible case of constipation. I eat crackers (soda, snack, animal, oyster, etc.) to try to quell the heartburn, but then too much of that causes constipation. And you damn sure don't want that! As to the fatigue factor, I was told by my medical team to try to move as much as I feel able, but then to take breaks and or a nap when necessary too. In essence it's all a trade off on how you feel and since chemotherapy affects everyone differently, your side effects may be different than mine. Whatever you do stay in touch, keep us updated, and we'll try to provide as many answers as we can and support throughout...
  14. Hello and welcome from me to the forums... after reading over all the submissions I get the feeling that while you are understanding your options, you just don't know which way would be the best to go...that is if you're given a choice. I'm not that far different from you; at least so far... After they discovered (and removed) two affected lymph nodes during my lobectomy to remove my RLL, I quickly went from a stage 1a to a stage 3a. Mind you it's all well and good to get second opinions, but know too that prescribed courses of treatments can be sometimes standard regardless of where you go. The reason for this is really academic in that statistically your medical team is looking for the best possible outcome with the least possible detrimental side effects to your body. Then too your team is always looking to make sure that there is a viable Plan A, then an alternative Plan B, and then an alternative Plan C, etc, etc. The reason for this is that not all treatments work for all people for one reason or another. From what I know, chemotherapy is harsh and can only be given for so long depending on the person and a person needs the right mutation to be even eligible for targeted therapy. And even if eligible, it may or may not work anyway due to bad side effects, allergic reaction, etc. And lastly, immunotherapies perhaps do work better for a person with a high PD-L1, but that is not always true either. All of this is meant for you to understand that some people are just more apt to respond to one treatment or another and there isn't really a guide as to what will work better for one person over another. Every cancer is different and every person's physical composition is different as well and that makes all the difference in what works good for one person and not another. Yes, you should get all the tests, CT scan, perhaps a PET scan, brain MRI, etc. but overall, you just have to wait for the best possible recommendations of your medical team based upon their best experience of what works. And once you get going on your treatment plan, whatever that is, you'll definitely feel better. For now though be positive, stay strong for you and yours, ask all the questions you can, and learn all you can so you can be your best advocate. Take care and know you have our full support...
  15. Jesse L.

    Lost a friend

    No matter when it happens, it's tough to take...my condolences across the miles...
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