Kimfish48

Judy, please don't worry about being blunt, frank or realistic. I'm the only one in my family who is all of those things given I'm the primary caregiver. She just had a CATScan a month ago and they said her brain was clear. The offer to discontinue chemo, I hope and I believe, is because she's suffering so much and because the difference between having it and not having it is only 8%. I pray that they're offering her that option because the odds aren't that much better anyway. But I really appreciate you bringing up all these issues. I have already asked to speak to the oncologist alone -- no response. I'll keep trying. And thank you! Be as blunt as you need to be. Thank you! Talk soon Love, Kim

Hi, all. I've been offline for a while because between looking for my mom and looking for a job, I can't keep up. I'm going up north to spend a week with my mom. As I've mentioned, She's got Stage 3a, Squamous cell, lung cancer. She has had terrible problems with nausea, so they've put her on the pot pill (this version's name is called Cesamet). She just went up to 2 mg. and she's got 2 more infusions to go (1 really bad one). The oncologist said that they didn't have to continue (because she is suffering so much). Here's my question. She is definitely very, very confused sometimes -- slurring her words, unsteady, forgetting things, etc. I'm assuming that's a cumulative effect of the chemo and the pot pill, but because she's had a history of depression and 2 psychotic episodes, my dad and I are very concerned. Can you tell me if you or your loved one felt this way towards the end of your chemo treatment -- especially if you were on the pot pill? I'm leaving tomorrow aft, and they have an "antique" computer, so I'll probably only receive any responses I get before I leave. But many thanks for your feedback -- I'll eventually get it. Thank you! Kim

Forgive me, Becky. I just read your kind note now. Thanks so much for sharing your experiences with me. I can't believe they nicked a rib! And I would have loved to have seen that machine that they used to pry your ribs open because apparently that's what they used with mom as well. Her lower right lobe was removed. She had tremendous pain after the surgery, but also started chemo very eary after the surgery (7 weeks) and is not tolerating it well at all. In fact, the oncologist is using the "pot pill" as a last resort to try and get her nausea under control. If he can't, he doesn't want to continue with chemo and see her suffer. And of course, that whole notion makes me hysterical. Anyway, my point was that she quickly forgot about the pain of the surgery when chemo came along! I think some of that pain will return when/if she makes it for chemo. Thanks so much for your insights. All the best, Kim

Hi, all. Haven't been on for a couple of weeks. So many fires to put out as my mom is not tolerating chemo very well at all. In fact, she is profoungly nauseated 100% of the time and on some days can barely make it from one room to the next (which is normal). But the nausea and her weight loss is so significant that the oncologist said that they might have to stop treatment. Great. He says the only thing left is the "Pot Pill" -- legalized here, apparently. Does anyone know if it definitely helps with nausea??? I'd really appreciate hearing your experiences with it. Many thanks, Kim

Muriel, thanks so much for your kind words. Mom is definitely going to talk to the oncologist tomorrow -- you can't heal and tolerate chemo if you can't sleep. Even if it is temporary. I really appreciate you sharing your experiences with me. Mom is definitely starting chemo earlier than the average person, but I'm going to take that as a good sign -- she may be staged at a 3a, but the tumour was reasonably contained and we believe the trace malignant lymph nodes are on the same side of the chest, which gives her a good, fighting chance. As a result, I think the oncologist wants to get fighting those nasty little cancer cells asap. And mom would completely agree with you re: the nausea. For some reason, she's suffered with it all her life. When she goes shopping, in crowds, when it's too hot, in the car, etc. So we really expected horrible nausea this week. Yet she did really, really well until last night. So as you and Judy have said, those nausea meds must be incredibly jam packed with steroids. I totally agree with you re: chemo being so scary because everything is new and you don't know what's normal and what's not. To be honest, that's where I get frustrated with my parents. I need to know EVERYTHING. I pick up information like a sponge and I research, research, research. I believe information is power and god knows we need as much power and control as possible over this disease. To my frustration, my parents are different. They take it day to day. But that leaves them open to the kind of fear and concern mom had today because she didn't know her reaction last night was "normal." In other words, it leaves them open to being "blindsided". To be honest, I've always been the assertive one in the family and have always been her medical advocate. I think they just assume I'll do the research and reassure them and I always do. Sometimes it's a big burden to bear and sometimes I get frustrated because they could do it themselves and they're not even interested in reading other people's experiences. But to be fair, they've only known about the pathology for 3 weeks or a month and I've had the pathology report for 2 months. That was also a heavy load to carry when they knew I had it -- yet they didn't ask any questions. They just waited for their meeting with the oncologist. Anyway, I guess everyone handles this situation in a different way and I need to respect how they want to handle it. Again, many thanks for your note and kind words. I will definitely give her your best! Bye for now, Kim

Thanks, Muriel. And apologies that I don't have my mom's history posted. I just joined and things are going at breakneck speed, but I will have to learn how to include that history. Bottom line: - my mom -- 70 years old; not in good shape; severe depression and other mental illness issues. - very aggressive colon cancer last year and she beat it - then through CAT scan follow up on colon cancer, they found a mass on her lung - initially they thought it was colon cancer that had moved to her lung which gave her about 6 months to live - Much to everyone's surprise, it was a brand new primary lung cancer (lousy luck to get 2 serious cancers in one year, but she did smoke for 50 years so it wasn't a huge surprise). - Staged 3a Squamish cell. - Just had a lobectomy few weeks ago -- removed lower right lobe of right lung. Unfortunately trace amounts of malignancy in several lymph nodes -- hence the Stage 3a diagnosis. - A few complications with surgery and 7 weeks recovery at home (in central Ontario) - First chemo infusion last Friday of Cisplatin, Vinorelbine, and Vinorelbine Tartrate - Went up north to be with her at infusion and spend several days after that - She's ALWAYS been nauseated for years (her Achilles Heel), so they've given her the gold standard in nausea drugs. About 4 different ones and then another one PRN - Much to our shock, after the infusion on Friday, she's been pretty darn good. Virtually no nausea (the drugs are amazing), a bit of fatigue, and still having some pain (particularly nerve pain) from the original surgery - No huge problem eating either -- Carnation Instant Breakfast, Ensure, fruit cups, occasionally a small portion of a normal dinner, popsicles, gingerale, and more - Next infusion (of the two "V" drugs only) is on Friday - She's having 4 3-week cycles (so 1 month total). - Only other side effect was that she found she was sleeping less and less as each day went by after the infusion. - Culminated last night into a full on thrashing, agitated state with absolutely no sleep. I know chemo increases your metabolism, so it must make many things in your body race (your pulse, adrenaline, etc.) so I'm thinking that might be it. - She's seeing oncologist tomorrow for blood work and is going to ask for a stronger sleeping pill or for something that addresses this agitation and sleeplessness (because it really weakens her for chemo). - I'm going to call ahead tomorrow and warn nurse of this new and weird symptom that needs to be treated (although I realize everyone reacts differently, everyone is on a different drug, etc.) And thanks for that interesting hint re: the gingerale! Hope that background helps. All in all, she breezed through her first week until last night and today. However, I know chemo is cumulative, so her symptoms will probably get worse and she's prepared for that. I just hadn't seen anyone complain about sleeplessness and agitation, so thought I'd throw it out there. Thanks for responding and caring, Muriel!

Hey, guys. It's Kim again. Sorry that I keep sending separate posts with new symptoms that mom is having. Wish I could have included them all in one post to save you the trouble. I guess the first couple of cycles of chemo are the ones that are the scariest -- and right now, she's really scared. Was wondering if any of you have experienced this.....by way of background, my mom sleeps long hours because of her depression and because of all the psych meds she's on, etc. She's already on a sleeping pill called Imovane. I've seen that several of you are on Ativan. Given my mom's drug tolerance, Ativan would be like a fly on an elephant's back for mom. Anyway, ever since her first infusion, she's been sleeping less and less each night -- no biggie because she was sleeping too much anyway. The night before last night was a bit worse and then last night was very, very bad. Even with the Imovane, she didn't sleep a wink and said she's never felt this way before. She said was was extremely agitated and thrashing around, etc., etc. And today she's so exhausted that she's slurring her words. She's seeing the oncologist tomorrow for blood work because second infusion is on Friday. I've asked her to be assertive with her oncologist re: getting something EXTREMELY strong to sleep because she says she can barely stand up and won't be able to tolerate chemo if this keeps up. She used to be on halcion (a very strong sleeping pill -- don't even know if they still prescribe it). But she definitely needs something of that ilk -- something that strong. I know chemo speeds up your metabolism, so I suspect that this agitation and sleeplessness is somehow related to that. Would love to hear about your own experiences and if you felt (feel) the same way mom does, what drug was prescribed for you. Many thanks and once again, sorry for the trouble. Take care, Kim

Thanks, Geri and Eric! Your input is much appreciated. You both made me and my mom laugh -- Geri with her "moulting" comment (hey, the taste buds get weird during chemo so maybe a little human hair on ice cream might be tasty!). And Eric for his unfailing and extremely annoying lack of symptoms. Actually, Eric, your "no nausea" thing is incredibly reassuring. I know mom might not be so lucky, but it's good to know that some people escape it! Thanks, guys! Kim

Love you guys for sharing and for being so patient with me. I know that every drug, every treatment regime, and every person is different, so don't worry about me "counting" on anything you say. As newbies to this, it's just really reassuring and interesting to hear how others reacted. Thank you! Kim

I told my mom I just sent my question out to all you wonderful folks and she's finally realizing what this site means to me and how incredible it is. And she actually wanted me to ask another question. Again, every person and every drug is different. But between all of you, what was the average time it took for you to start losing your hair? If you did, of course! Again, I know all your experiences will be different, but reading them will be helpful anyway. Thank you! Kim

Hi, guys: It's Kim and I'm up north at my mom and dad's for mom's first infusion. It was on Friday -- 3 hours worth. Cisplatin and two other drugs I never hear mentioned on this site that start with V. It's now Monday morning and all she's demonstrated so far is increasing fatigue each day and weird taste bud sensations, but she's still eating and spirits and attitude are pretty decent. That said, I know that side effects often take a week or several weeks to show up. I'm leaving tomorrow (I'll be coming back and forth). But I do have one question. Mom's achilles heel has always been nausea, but knowing that, they've given her the gold standard in nausea drugs (tons of them, actually). To all the kind people who usually respond to me -- Judy, Jane, Katie, Susan, Judy in KW and TS, can you tell me when your or your loved one's nausea started? (and I do know everyone and every drug is different). Was the nausea fairly immediate? Did it take 5 days to show itself? I'm just so surprised that she hasn't had ANY nausea yet and was wondering what the "typical" (if there is one) experience is. I'll be sooooooo happy if she dodges the nausea. I also realize that chemo is cumulative, so it will get worse as we go along. But just wondering about your first infusion and when and if nausea reared its head. Thank you and hugs, Kim

Thank you, Bud. That really means a lot to me -- I appreciate it. And I'm glad that my experience with my parents is probably more common than not. I'm not saying that we don't have a great medical team -- we do. But we all make mistakes in our jobs. We all forget to communicate things. And I don't think the medical profession is any different. We're all human and the questions we ask aren't meant to "challenge"; they're just meant to clarify. I think the most "problematic" time happened when mom was in the hospital for surgery. My dad was still coping with his denial and keeping mom comfortable. I was with her 24/7 as well, but I cannot believe the mistakes that were made in the hospital. And I don't want to single any one out as a bad person or a bad doctor or a bad nurse, but here in Canada, our health care system is "broken". Too many sick people; not enough health care professionals. And I think there's a very nice, tactful, respectful way to ask something or question a decision that doesn't imply you think the other person is an idiot. But the bottom line is that you are so right. I would hate to be a patient with no advocate. And my parents frustrate me so much because, unless I'm with them (and I'm two hours away), no questions get asked. I guess the "failing" is really mine because I judge them for that and I shouldn't. It sounds like you have the same problem re: the distance issue. I'm lucking in that the cancer team we have includes a great nurse who has been very patient with my constant inquiries. I'm surprised she's still taking my calls! Take care, Kim

Thanks, TS. And no problem with directness! Man, after the last few months, there's not much that sounds too direct for me! And good for you for going to group. Everyone is always bugging me to, but I do so much better in a one on one session or in a forum like this. Ahhh...I get what you mean about your surgery! Interesting. Yeah, I'll have to chase my surgeon's nurse re: what they did to mom. It's sort of an important thing to know if she wants to understand why she's still feeling pain 7 months later! I love my parents to death, but if I'm not an appointment with them, they just don't ask questions. They don't question the system, the doctor, the procedure, the drugs. I don't think you need to question all those things, but don't you even want to know what he did to you??? I should know better. In my family, I'm the only one who challenges or advocates. And as someone who used to be terrified of conflict, trust me, it has really helped me grow as a human being. Heck, something good has to come out of all this, right? Many thanks for your second note and take care. Kim

Thanks, TS and Judy. I really appreciate your input. You guys are so much better at "this" than I am. Give me a bit of time and unfortunately, I'll catch up. . Judy, I think you're right about trusting my gut. My gut says that my mom has a horseshoe somewhere -- especially after fighting and beating a totally different primary colon cancer a year ago. And then being one of only 20% of all lung cancer patients who are operable. So for some reason, I think and I pray and I hope and I believe (maybe stupidly) that we'll be blessed to have her with us for a while. And more than anything, I know what she wants for me -- she wants me to resume my life, which I've put on hold for 5 months now. She wants me to see my friends again, find a great job and not worry about her. Impossible, but that's what she wants. And in terms of my mental health, a good job has always been my emotional salvation. A good part of what I do is executive speech writing -- and trust me, you can't think of anything else when you're doing that! Re: pain medication, my god, I'm all for it. If someone's stomach can tolerate it, there's no reason in the world to suffer through pain -- especially if you hear the word terminal. I'm on loads of medication. I've got a big metal plate in my neck (ddd) and the pain is constant, so I've got Oxycet for that and Tylenol #3, but the Oxy really upsets my tummy so it's reserved for the worst pain (like a trip to San Fran on a damp and rainy day when the arthritic part of my ddd starts screaming), I'm on anxiety medication, muscle relaxers for my neck at night, sleeping pills, and more. And now my doc/counsellor wants me on anti-depressants because of what we're going through. Been there; done that. And right now, I want to feel the pain and grief. I think it's normal. I still laugh sometimes. I just need to re-enter the world, start seeing my friends again, and get a job. And after watching my poor mom with her mental illness and psychosis, I'm well familiar with the warning signs of a severe depression. So hey, if I could take morphine or Perc or anything else on a regular basis with no side effects and no concerns about addiction -- I'm there! So I will be watching my mom carefully to ensure her pain is managed appropriately. TS, you said something really interesting that I'd like to ask you about if you don't mind. I think, but don't know, that you implied that you knew -- based on the incision location -- whether or not ribs would have been broken or cut. Am I understanding you properly? If so, what do you make of this? My mom's incision starts on her the back of her right shoulder blade and curves around and down to the bottom of her ribcage. She also had 2 chest tubes in and there are a few other incisions they made to take lymph node samples, including an incision at her throat where they checked for malignancies in her bronchial tubes. Do you have any idea if that sounds like surgery that would typically demand broken or cut ribs? And the fact that I have to ask you is pathetic and embarrassing, but I missed one appt. my parents had with the surgeon and they didn't even ask him exactly what he did. Sigh. I've got a call in to his nurse. And thank you for the info on recurrence. Mom is worried about a recurrence in the large lobe she has remaining. According to Dr. West, that shouldn't be her biggest fear. In terms of staging, she's an N2 and that means that any recurrence has a 60% chance of happening at a "distant" site removed from the original cancer site -- most likely brain or bone in the case of lung cancer. And yes, I know I'm putting the cart before the horse. It's the one thing about me that I don't think I'll ever be able to change. I watched my mother wrestle with her major depression and anxiety and psychosis her whole life and I dedicated my life to advocating for her. It's a chemical imbalance and only chemicals resolve the issue. And it's also highly genetic. Luckly, I only inherited the anxiety. And unfortunately, I think that's why the cart is always going to be before the horse as long as I live -- even with medication. I can manage it. I can keep busy. But I can't stop investigating the "what ifs". I don't like that part of myself, but I've done tons of work to change it, including the meds. But at 48, it seems to be here to stay. Fortunately, it's occasionally useful Thanks, guys. Kim

Thanks so much for your perspective, Judy. Do you know if they broke or cut any of YOUR ribs? What kills me is that my mom doesn't know exactly how her procedure was done, so I've left a message with the surgeon's nurse. I am so glad I have this place to vent because I just don't understand it when people don't ask questions, why they don't want to know things, why they aren't proactive. God, I hate to sound so judgemental, but it's such a different mentality to mine that it's difficult for me to comprehend. And I know that's not fair. I know I have to respect that everyone deals with things in different ways. I've got my mom down from Percocet to Darvon because the Perc. was nauseating her so much and the Darvon seems to be holding her well. But if she needs more powerful drugs, then we'll have to figure something else out. Is Vicodin codeine based or is it more similiar to Oxycet/Percocet? I know one of them is opiat based and one is codeine based. I shared your mom's info with my mom via email, but was careful to qualify things because I didn't want mom to think that she'd need heavy duty painkillers the rest of her life if they did cut her ribs. I told her (just a brief overview) about your mom's health history and all the issues she was dealing with in addition to the lung cancer -- just so the morphine "for the rest of her life" thing wasn't overwhelming because your poor mom had so many things going on (although constant morphine sounds like a good idea to me right now!). And I know I'm looking too far down the road and maybe that will be beaten out of me given the twists and turns of cancer, but to be honest, I think that will be the last thing to change about me (and trust me, I know I need to change a lot). I am sooo not a day by day person. I need to understand our options in one year, in two years, etc., and I realize I won't have that luxury now. And that's something that's killing me re:looking for a job. I have no clue what type of job to commit to. Mom could have 5 great years and I could have a great senior and busy role somewhere that keeps me sane. Or I could take a more junior job -- assuming that the worst will happen sooner rather than later and wait for the other shoe to drop. This sucks. And I know it sucks for mom most of all -- especially if someone took a saw to her ribs! Thanks for the info! Kim