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Sandy N

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Everything posted by Sandy N

  1. I was on 80% dose of the Tax until this last Friday and they lowered it to 50%. I have another treatment in 3 weeks at that lowered dose and then a scan to see where I'm at and that will determine if I need any further treatments or if I can go on maintenance. I'm hoping for the latter, of course. Because I haven't been getting full dosages, there's the chance I could continue on with a couple more to make sure I eat the whole bag of cookies. LOL!
  2. The side effects of the Tax/Cyr are miserable. For me the worst side effects are the debilitating muscle/leg weakness, mouth sores and having absolutely no taste buds. There are others as well but I could sure deal with them as opposed to what I'm going through now. I just hope the misery is worth it. Let me know what direction you're going to go and if you decide to go this direction, please feel free to reach out with any questions or even just to vent! This stuff will make you want to vent, that's for sure!
  3. Hi, Jen! I am very sorry to hear this. You have received some good tips. I'd like to reiterate to NOT pay attention to Dr. Google (outdated stats on the 'net) or anyone else as far as life expectancy goes. My oncologist and I have an agreement that if I want to ask that question, I will be the one to ask it. No one is to volunteer their .02. Which he did before I started treatment. I got the same 2-3 year spiel. The agreement started right then and there because I wasn't going to take this disease laying down and neither should you. Your comment about fighting is spot on and this is going to be a fight. But oncologists have a lot more tools in the toolbox nowadays to help you fight. So don't give up hope. I've also been told that attitude is everything. Yeah, there are going to be days you're not going to feel so good but you at least have the assurance of knowing that you are FIGHTING THE MONSTER!!! We're here for you!
  4. Seems like with lung cancer (and many other cancers as well), you're never just "one and done". I was diagnosed in November 2019 at stage 3A. Treatment (chemo and radiation) worked and my chest has remained fine since then. I enjoyed a lovely spring and summer of NED but then a scan in late fall revealed that it had progressed to both adrenal glands. I've been on a couple different treatments since (this one I'm on now is kicking my butt!). You are definitely not alone nor will we let you deal with it alone. Most of us have either been there done that and/or currently dealing with it. There are so many tools in the toolbox to deal with this stuff so hang in there! Don't lose hope because you are in the company of some diehard hopers!
  5. Funny how they don't differentiate between situational and clinical depression. I'm depressed right now because of how I'm physically feeling but I'm not depressed in the clinical sense. Sheesh! They'd better remove that for you!
  6. Ugh, the indigestion! I guess we'll just kind of limp through this and hope the results are worth it, eh? I'm so happy that I have the best supervisor and coworkers around. Usually I'd only miss the 2-3 days after treatment, would just work from home. But this last go-round, I've only been in the office one day and that was this last Thursday. Holy guacamole!
  7. Thanks, Jack! I'll keep that in mind for sure. Cepacol did nothing but just burn my mouth. Good grief what a ride this has been the last 4 weeks! I usually try not to complain but this time around is miserable. My mouth hurts, throat, rear end. You name it, it hurts. Makes a person want to lay on the floor and quiver and cry for mommy!
  8. Pharmacy didn't have what I was looking for but I did settle for tangerine-flavored Cepacol lozenges. I'll see how those work. At least it'll get my throat as well.
  9. Thanks, Judy! And I'll take your advice to heart I've been making a point of at least muscling down the liquids for that very reason. I can handle being a little hungry (I have some lard to lose anyway - LOL!) but inability to drink, nope. I'm going to be going to the pharmacy here in a few minutes to hopefully get some assistance for my mouth. And there's a double motive....the pharmacy also has a coffee shop and I'm treating myself to a strawberry frappe (non-caffeine). Aaahhhhhh, the icy coolness as it slips down my throat!
  10. LOL $500 a bottle is a bit out of my affordability range. If I can't find what I'm looking for at the pharmacy today, I'll go with Cepacol just so I can eat in some sort of comfort. Drinking isn't the most fun right now either. But hopefully this will all be worth it. Thanks, Judy, for your response!
  11. No. I think it might have started with an F but I could be getting that mixed up with the myriad of other pills I'm taking. Ugh, I'll be happy to get off this laundry list of pills. But I must have patience. Thanks for your reply, LexieCat!
  12. Hi! I was wondering if someone knows the name of an over-the-counter mouthwash that relieves mouth and throat pain? I'm not talking about that magic mouthwash stuff as I know you need a prescription for that, which I got, couldn't even stand the smell so didn't use it. Apparently there's a mouthwash (and also comes in lozenge form) that has a rather pleasant taste (citrusy mint). This particular treatment (Taxotere/Cyramza - probably more the Taxotere) is taking my mouth and throat for a ride. I found the name awhile back on a thread and cannot for the life of me find it again. Thanks in advance for your help!
  13. Sandy N

    Lost a friend

    Very sorry to hear this, Tom.
  14. Sounds like you've got a wonderful oncologist!
  15. Jesse, no one deserves cancer no matter what the cause. I was a smoker, too. In fact, was a smoker when I got my diagnosis. Haven't smoked since, though, but that's my choice. I, too, have noticed that the FIRST question people ask when they hear someone has lung cancer is always about smoking. Seems to be a lack of empathy for smokers. If they hear a person was/is a smoker, it's just a shake of the head, a shrug and "well". Huh?
  16. https://news.yahoo.com/could-soon-vaccines-cancer-hiv-153341415.html
  17. It was just automatically prescribed to me. This was just par for the course, I guess. Probably just the way my doc does things. Ah well, I'm good with it and it works. The only thing I get swabbed with is that orange cleaning stuff.
  18. Hi, Sheila! First of all, I understand what you meant about it "selfishly" making you feel better to talk to others who are in the same boat. Not selfish at all! The best support comes from people who can honestly tell you that they KNOW how you feel, instead of someone just sitting there nodding and "understanding" how you feel. While the latter means well, they haven't walked the walk. But any support is always appreciated. About the chemo. Since you are on a triplet, the appointments could take 3-4 hours. They'll do labs on you first, then there's usually a little bit of a wait for those to come back. Once those get back and if everything is good to go, you'll get your anti-nausea drips first. Then the drugs. I use the chemo appointments as personal relaxation time. I bring a book to read. I've been able to start catching up on my reading since this all started in Fall 2019! Side effects - not everyone experiences all of them. I think few do. But you will experience some. Your care team should go over this stuff with you prior to your first infusion. Good on getting a port because, as another poster said, your veins will thank you. As far as your port goes, you should receive a prescription for lidocaine/prilocaine cream to put on it prior to your infusions. Make sure you ask about this. I slather it on quite liberally about an hour and a half before I'm to get my infusion. Any earlier then it could wear off. And the best way to keep this mess off of your clothes? Cut a piece of Glad Press & Seal plastic wrap and put it over the port after applying the cream. The sticky side of this stuff will affix to your skin. Hang in there and keep us posted! We're here for you!
  19. Chemo can be daunting and terrifying at first. But it really isn't that bad. They will shoot you up with anti-nausea meds prior to beginning the drugs. It's not a bad idea to have prescription anti-nausea meds as well but try to go easy on those if you can. They cause constipation which in and of itself can create nausea. Some chemos do, too, so that's something to keep in mind. You should get "chemo ed" by one of the nurses or your onc prior to your first infusion and they will let you know what you might expect. Not everyone experiences all of the side effects. Some do but I'm going to guess that most don't experience all of them. I use my chemo appointments as "me" time. I bring a good book (nothing like being in the middle of a good book) to read and just relax. Hang in there. This is just another step in giving this nasty tenant its eviction notice!
  20. My last treatment regiment prior to this one was carbo, alimta and mvasi. So I totally get what you are going through. I had a tinge of nausea but really fought taking any of the anti-nausea pills they prescribed to me as they caused constipation. I've probably only taken 2-3 of those things since I was first diagnosed and started treatments in Fall 2019. So far the anti-nausea drugs they shoot me up with prior to my treatments are doing the trick. I found that the nausea related to constipation was just awful. I have used Milk of Magnesia and that really helped. If you can, get the cherry flavored stuff. The plain stuff seems to have a slightly fishy undertaste and you'll need some sort of beverage chaser immediately afterwards. The side effects such as fatigue, etc. seem to wait for a day or two after the infusions. You'll probably get some taste changes, too. I didn't get the metallic taste from carbo/alimta so that was good But some foods would leave what I would call a sludgy, oily miasma in my mouth. I found that acidic foods are tolerable for me. Kind of cleans my mouth out. Hair loss should be mild. I did get some thrush once but got some meds for that. No mouth sores, no rashes except extremely dry palms. Lotion helps with that. If you have any other questions or just want to keep me up to date on your side effects and how your treatments are going, I'm only a post away and will be happy to share my experiences with you (and hopefully we'll both have good news to share). Right now I'm on Taxotere and Cyramza. Taxotere is a little harsher than carbo but the side effects sound pretty similar to what I was on. Except I'll probably lose the rest of my hair but that's OK. It does grow back. Thanks for your well wishes on my treatments. Hopefully the third time will be the charm. I wish you the best, too, and you have my 100% support!
  21. Just had my first treatment today. Feeling good so far but I know from experience that side effects are just a day or two away. I did find out some very heartening news today. At my last meeting with my onc to go over the scan, he had very casually mentioned a mass that was shrinking in my chest but then that was it. I did ask about it today as I was concerned that perhaps I not only had a met but a recurrence as well. Found out that the mass is indeed shrinking.....the burn pile mass. LOL! That's why I've had a bit of a cough, slight rasp to my voice, clearing throat an a bit of a wheeze. The lymph node that was enlarged 3 months ago has shrunk, too! So, whew, what a relief! So now the only fish to fry are my screamin' adrenals! Feeling a lot happier and chipper, I tell ya! Edited to add: For anyone who is new here and doesn't know what the "burn pile" is that we refer to, it's the mass of charred tissue (LOL!) left behind by radiation. It does start to shrink over time and causes surrounding lung tissue to contract and tighten and there are some side effects associated with it. But easily doable!
  22. Just had my first treatment today. Feeling good so far but I know from experience that side effects are just a day or two away. I did find out some very heartening news today. At my last meeting with my onc to go over the scan, he had very casually mentioned a mass that was shrinking in my chest but then that was it. I did ask about it today as I was concerned that perhaps I not only had a met but a recurrence as well. Found out that the mass is indeed shrinking.....the burn pile mass. LOL! That's why I've had a bit of a cough, slight rasp to my voice, clearing throat an a bit of a wheeze. The lymph node that was enlarged 3 months ago has shrunk, too! So, whew, what a relief! So now the only fish to fry are my screamin' adrenals! Feeling a lot happier and chipper, I tell ya! Edited to add: For anyone who is new here and doesn't know what the "burn pile" is that we refer to, it's the mass of charred tissue (LOL!) left behind by radiation. It does start to shrink over time and causes surrounding lung tissue to contract and tighten and there are some side effects associated with it. But easily doable!
  23. Great news, Ale - and it seems your spirits are higher these days. Keep them there....I've been told more than once that attitude is a good part of the battle!
  24. Thanks, Bridget, for your reply. I'll keep an eye out for the neuropathy. I think I'm also going to lose my hair (again) but I'd rather lose that than my life. It's too bad, it was growing back so nicely but I did have some mild hair loss with my last round of treatments. So I guess that was prepping me - LOL! I'm very happy to hear that the Taxotere did its job for you and I'm hoping the same for me (and all others who have it). My hope that the end result of the Taxotere treatment, while it won't be the easiest (but are any of them???) will be well worth it. I will be receiving "chemo ed" prior to treatment on Friday but I wanted to know what other folks' experiences may have been with Taxotere and/or Cyramza. I'm so happy that you are NED! Woohoooo!
  25. Hey, it's me again. The next step in the saga of "Me and My Adrenal Glands" will be 4x Taxotere (docetaxel) and Cyramza 3 weeks apart. I have read that Taxotere is rather harsh (hey, lucky me!). I was wondering if anyone here has had any experience with either of these drugs and, if so, what can I "look forward" to (for lack of better way to phrase it). I'm remaining optimistic that this regimen will pack the punch necessary to send those adrenal glands screaming out for mommy. Edited to add: Stay tuned....this saga could become an all-out epic saga....kind of like Kevin Costner movies that never seem to end! LOL!
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