Jump to content

Jesse L.

Members
  • Posts

    205
  • Joined

  • Last visited

  • Days Won

    6

Everything posted by Jesse L.

  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...
  16. Hello again... While it wasn't quite what you wanted, it is so much better to be working with medical personnel who take the time to tell you what they plan on doing and why. Even though my affected nodule was only 1.8 mm by 1.2 mm I was told by my surgeon that he would have to remove my entire RLL because of where it was with respect to the vascular system supplying it. Why is it that some medical professionals find it so hard to relate to patients I'll never know. But as patients we have the right to know everything that is happening and that's all there is to it. I hope that things turn out as well or better than you expect. And yes no one wants to do any of this at all, but we all do what we must to live. Life is never so precious till it's threatened... Stay in touch and let us all know how it went. Never forget that you're a survivor too!
  17. Hello from me...just another person with cancer issues as well. Wow, if I had a dollar for everyone who thought they would never be on these forums... Don't get me wrong, I'm not trying to make light of the situation, but it is what it is. And that's an important point in itself...read on: 1. Let's face it, practically no one studies about anything cancer in their spare time so it's always a surprise whether it's you or someone you care for who "who all of a sudden" has it. You've acted quickly and I commend you for taking the initiative to learn all you can. I would always stress to anyone when first facing cancer that very thing. It is impossible to be an advocate for the best care when you don't know what any of that care entails. 2. And please oh please do not let the blame game begin. That is a dead end road of hurt and despair. Know that no one and I mean no one deserves cancer of any kind no matter what factors may have contributed to that diagnosis or not. 3. You do not have a definitive diagnosis yet and there is no sense in speculation. As LexieCat stated the worst part is waiting for that and then waiting for an approved treatment plan to begin. Believe me when I say that whereas you just want this to go away quickly, that is not about to happen at all. 4. You've read enough from the others to know there is most likely a long road ahead. That is if your Dad chooses to go down that road. No one can make him do anything and he may just decide to forgo treatment. Of course, if it is cancer then we all know most likely where that road leads to. 5. The personal issues you have with your Dad can certainly be an impediment to dealing with the issues he will face now. I strongly urge you to seek counseling, preferably together, so that you can come to an understanding that will be mutually beneficial in helping each other through this. From what you write you do care and even if your Dad dosen't want to go to counseling, then you definitely need to go...alone if it must be so. 6. For now I would recommend as the others above have stated to take your cues from your Dad. Your reactions should be as honest with the situation as you can be given your limited knowledge of a definitive diagnosis. However, you should try to be as positive and upbeat as you can be too. As others have already attested to above, cancer and it's treatments have come a long way in just a few years and with that no one can say how long your Dad has to live. If he chooses to get treatment he could live a year or five or ten or more years yet. If you think about it, the rest of us aren't given any more guarantee than that either about how long we'll live. Oh, we like to think we're the the masters of our own destiny, but in reality each one of us is not that at all. 7. On the forums we refer to them as mets when we talk about a cancer that has metastasized outside of the original affected area. Just know that regardless of areas affected, everything for the most part is treatable and will lead to a longer life. Now, how much longer is the question... 8. Yes, there is biomarker testing and it is nearly a given that it is done automatically in the determination of a course of treatment, but that is why you need to ask a lot of questions of your medical team when it comes to that fork in the road. The more you learn and know, the better advocate you can be for his care. 9. Whether it be on this forum or in other areas of care there are a great many services available that will either direct you to or provide direct care to your Dad. Either your medical team at the clinic/hospital or the on staff hospital social worker will be able to hook you up with whatever you may need. And much of it can be got for not a lot of money...there's a lot of caring people out there; you just have to give them a chance. I hope I've given you some things that will help... Sometimes now you'll have to be a lot of different things, strong when you need to be to make sure your Dad gets what he needs, knowledgeable to know what that is, and compassionate when times get tough. I won't lie to you; treatment can be harsh and that is because cancer is such a vile and despicable creature. Believe me though when I state that you will find strengths you never knew you had... As for myself I'm now suffering through the bad part of my second course of a four course treatment of chemotherapy. And that's after endless scans, tests, and an operation to remove a part of my lung. But I know where I'm headed (or at least what I'm hoping for). You need help more than I do now...think about what is written here. And stay in touch...all of us on these forums care...
  18. I'm so sorry to hear that you have had the difficulties getting proper care for your Mom. And what a horrible experience she must have had in the so called "care" facility she was in. I might have had my complaints about the VA system, but never have I been physically treated badly in their care. I was hospitalized twice since my lung cancer diagnosis on 12/25 and the care there was very, very good both times. The first time the first meal I could eat was actually lobster and the second time I was on a floor of the hospital that had more nurses than patients (my care was exceptional). The second time as well I asked to stay one more day because I felt uncomfortable going home so early and they were very agreeable to that too. Of course, I've had some complaints with certain Dr.s, but never with the normal care at all. Just one more example of the care, upon being cleared to go home I was in the process of being on one knee tying my sneaker when a nurse unexpectedly came in my room and exclaimed excitedly "You didn't fall, did you?" I quickly explained that I was just tying my shoe and she told me that they do that...period. I didn't realize it then but apparently there's hell to pay if a patient falls on a nurse's watch. Oh, and that same nurse carried all my extra stuff down to the lobby for me (even though I could have easily carried it myself). And then when we got there she took all the time necessary to explain my schedule of meds to my significant other who was waiting for me there. Now that's care...!! ☺☺☺
  19. Thank you much for the compliment...my explanations tend to get a little long winded, but that is because I believe that the key to fighting cancer is knowledge, whether it be in the mind of the advanced researcher or that of the novice. In my opinion that is the only way to allay the confusion, anxiety, and fear that inevitably comes with cancer. Too often it happens that medical professionals don't realize the immediate affect a cancer diagnosis has on the complete novice. The first time I had cancer was in my late 50's with prostate cancer. On Friday I had my prostate biopsy and when I came in on Monday to get the results, the Dr. hurriedly walked in the door and blurted out loudly to me you have cancer. There was no breaking it to me gently with a caring explanation of next steps, but rather an abrupt answer to what plagued and worried me over the whole weekend. It wasn't till much later during our appointment that he started to explain treatment alternatives and then it was only because I prodded him to do so (as it was I had my prostate removed as soon as I could). And the very same thing happened to me after my lobectomy surgery when the affected lymph nodes were discovered and removed. Once that happened I went from a stage 1a to stage 3a. When it came to my post-op appointment, they sent in a doctor who I had never seen before to talk to me and the first thing he said was and I quote "l'm sorry to tell you this but you only have a one in three chance of living another five years." Understandably, I was in shock, especially when I believed up to that point that I was still a stage 1a; a condition of which should have been completely remediated with the surgery. After he told me basically that I was going to die, he went on to explain why I was now a stage 3a, but not once did he mention any possible treatments. Only as we were both leaving the room did he belatedly mention that someone would call me to discuss possible next steps. The more I thought about how badly this was handled...TWICE, the more I realized how much I needed to get up to speed on everything cancer if only to fight the ignorance of so called caring medical professionals. There is no excuse for the anxiety and fear that I faced. So, my only answer is to become as knowledgeable as possible about cancer to fight this. While I know it was the farthest thing from your mind to do so (just like it was for me), I strongly urge you to learn all you can about cancer. Save yourself any pain you may face in the future from ignorance and become a stronger person for it. What I say here is not meant to scare you, but it is a fact that once you have lung cancer at any stage there is a greater chance that you will get it again. That is just another reason you need to learn all you can; so you can be your best advocate no matter what happens. But don't get me wrong; I do really wish you the very best and I hope that you never hear the word cancer again in reference to your health. I wish you hope for the best, but please plan for the worst...the mind you save will be your own! Oh, and by the way your body has anywhere from 500 to 600 lymph nodes...we can all afford to lose a few with no side effects whatsoever. Please just think about it.
  20. No one and I mean no one here will delete anything you write within reason about you or yours lung cancer concerns. We are all here to support each other and provide as much information as we can to each other about our respective cancer journeys. That being stated, I too had to look up alpha 1 disease as I'd never heard of it before. I would strongly urge you to relax and wait until there is conclusive evidence of whatever lung conditions that are causing your Dad's lung difficulties. I know...easier said than done, but please look at it this way. Regardless of your anxiety level that will not change what his diagnosis or possible prognosis might be. So,save your sanity! Be involved, be patient, be as positive as you can be, but most of all (I think) is to become as informed as you can about everything as it may relate to your Dad's possible conditions. In my opinion that is the only way to fight the all too prevalent anxiety and fear that can come with a debilitating lung condition. By all means ask as many questions as you wish about your concerns...we are not medical professionals, but we have a wealth of experience about this disease. Take care of yourself and stay in touch...
  21. If I recall the trial indications and preliminary results thereof, they stopped the study because it was working so good in regards to the patients using the device and Novocure was applying on an emergency basis to the FDA to make the device available to ALL trial participants. From what I read per FDA rules, that's just the way it's done. Now, I could be wrong about this and please if I am someone let me know. I remember in a post I wrote that it's about time researchers looked into all possible ways to fight this disease...especially those that come without debilitating side effects! I for one get tired of listening to drug commercials where the list of side effects is longer than a person's arm...twice as long in fact!!😦 😦😦😦 Maybe they found a magic bullet...if anything maybe a little one. I know it's alright to be skeptical but we got to have hope too!!
  22. As I shared in an earlier post, I had a VATS lobectomy to remove my RLL when they were so sure that my lymph nodes were not at all affected. Well...they were wrong. Their reasoning for such a diagnosis prior to my surgery was that the PET scan with contrast I had prior to the surgery did not "light up" at all; either in the diseased nodule or any lymph node whatsoever. Of course, it was explained to me later after the surgeon found the affected lymph nodes during the surgery that some cancers are so slow growing that they do not light during a PET scan. A "light up" during a PET scan shows that a growth is using an inordinate amount of sugars (energy in the contrast used) which would normally occur in the case of nearly all cancerous growths. However, my diseased nodule (and apparently affected lymph nodes) chose to be very slow growing and as such fooled the doctors into believing that only the nodule was cancerous due to the biopsy I had on it to confirm the diagnosis. It only goes to show that cancer, really in any form or type, affects everyone differently. And the same goes for treatments as well. What may work inordinately great for one person will cause bad things to happen to another person with the same affliction. Nevertheless, as I stated earlier, the fact that they found the affected lymph nodes during my lobectomy is the reason I am on a four course treatment of chemotherapy now. Sure, they cleanly removed all the easily seen "affected" areas they could find from my body,but what about those few rogue cancer cells that could have possibly escaped via my lymph system. I had to look it up to be sure but according to American Cancer Society information, the lymphatic system can kill cancer cells, but the growth of cancer cells can be just fast enough to overwhelm the ability of the lymphatic system to eradicate it completely. Therefore, there remains the possibility that live cancer cells can escape the lymphatic system and could have been introduced into my bloodstream. So, for everything your medical team either does or does not recommend for you, there is a very good reason. Whatever they say it is always good to ask many questions and those will lead to more questions, etc. My recommendation is that you learn a lot more than you need to know. Cancer is an unpredictable, diabolical, and devious enemy. It may affect anyone once and be done, but it can also affect many much more than once. As with many others on these forums I too have had cancer more than once; first was prostate cancer and now with this lung cancer... As I mentioned before, but it's worth mentioning again, stay realistic, stay positive, and stay above all informed. It is the only way to stave off anxiety, confusion, and fear! Take care of yourself and let us know how you're doing...
  23. Welcome to the forums...your welcome to whatever personal knowledge we can bestow upon you. While we're not medical folks, lots of people here have lots of experience in lots of things cancer related. As to your questions, I had a lobectomy on 2/25 to remove my RLL that had a 1.8 mm by 1.2 mm adenocarcinoma within it. It just so happened that while they were in there they noted two affected lymph nodes as well and they took those out too. From what I've read and understand, lymph node removal does not have a lot of affect on the body's overall immune system in regards to your pulmonary system. Further study has informed me that the body has overlapping immune systems more than capable of covering for the loss. Now, as to your particular concern, lymphedema occurs as a result of a blockage or loss of the lymphatic system in an arm or leg. If this occurs there is a possibility of edema (swelling) in that appendage. However, even in the case of those with lymphedema, it is quite manageable even for those that have it for life. As to whether the disease has spread or not, you have to ask very pointed questions of your medical team and listen closely to their answers. Once again however, even if they have done all the tests (CT scan, PET scan, biopsies, brain MRI, etc, etc.) they still cannot be absolutely positive until they get inside and look around (as in having a lobectomy). In my case the disease did not show anywhere except for the nodule and yet when they got in there that's when they noticed the affected lymph nodes. By the way I will receive my second infusion of a four course treatment of Carboplatin/Alimta this coming Wednesday. It is considered adjuvant chemotherapy to take care of any stray diseased cell that may have possibly escaped into my bloodstream from the affected lymph nodes. While medical can detect a tumor through scans, they can't find a possible few cancer cells floating around in the bloodstream. If you take my advice, try your best to not be so anxious; understand that your anxiety level will not affect a true medical outcome concerning your health. I suppose that comes off as kind of cold but nothing could be more true. To counteract any negativity you need to stay involved but stay positive and to be your own best advocate you also need to learn as much as you can from everyone possible about the disease. In many cases though you also need to be careful about what you learn too. There's lots of information out there, but make sure you get the best and right information. And if you're not sure about something, always take steps to verify everything. I hope I gave you some knowledge and tips you can use. Stay in touch; we're here for you...
  24. I've heard and became informed of the Novocure treatments and from what I understand it was originally used as an effective treatment for glioblastoma. Due to positive results it is now in trials for NSCLC. Everything I've heard so far has been positive in that it is an easy treatment with little to no side effects excepting for those as a result of the concurrent chemotherapy that goes with it. Given the above, if I were a fit candidate for the trial I would seriously consider doing it myself. Basically, with proper care and supervision a person dosen't seem to come out any worse for wear and in my opinion there's a fair chance a trial participant could come out better than they went in. So, it's a better than fair trade off... You should hear from others about this as well...I have read quite a few others write about Novocure on these forums too.
  25. Let me just add my support for all you're going through... I too have had a few additional conditions that went along with my lung cancer diagnosis, but nothing like whar you are having to endure. Please try to not let your mind run away with worry. Lou is right; your anxious concerns about test results will have no effect on their outcome. You will only become stressed out waiting for the results. So...just stay positive and committed no matter what the outcome may be. Like LexieCat stated, "What's the next plan?"
×
×
  • Create New...