Cathyanne Posted January 14, 2011 Share Posted January 14, 2011 Aloha everyone- My story is in the "Introduce Yourself!" section, but I'll briefly reiterate here. My 77-year-old dad was just diagnosed with Stage III A (not IIIB, as I previously thought) NSCLC. He also has emphysema, COPD and congestive heart failure. He will be undergoing both chemo and radiation beginning next week. He's had a port installed and met with the radiology oncologist, as well as his regular oncologist today. And awaaaaaay we go....! Dad just got his chemo schedule, and we start next week. Radiation only on Monday, Wednesday, Thursday and Friday; Radiation and Chemo on Tuesday; and Radiation, blood draw and bloodwork check with the oncologist on Fridays. He'll also be prescribed some Ferrous Sulfate to help with his iron, and Decadrel, which is supposed to help with the chemo nausea and help prevent infusion reactions. I told dad he was going to need a bigger pill organizer! Poor guy was also battling sciatica pain, and he's worried that he'll have to lie still on his back (which he can't do right now) for so long during radiation, and sit for so long during chemo. He was prescribed some muscle relaxers for that, and hopefully that will help a bit over the weekend before he starts. He feels really bad about my having to take off from work, and use up my vacation time, to take him to all these appointments. And I feel bad, when he feels bad! But if everyone comes through who said they would help, we should be fine. Take care, everyone, and have a great weekend! -Cathy Quote Link to comment Share on other sites More sharing options...
Annette Posted January 14, 2011 Share Posted January 14, 2011 Cathy, Definitely not a fun time - but there is a strength in your writing so I'm sure even with the ups and downs you will be able to muddle through whatever is thrown your way. There are so many folks here that have been through the rigors of chemotherapy they can probably help you more than I can. I know that even with the side effects they come through somehow - and so we will be waiting for updates and success stories. If you have any questions or need anything specific - someone here can probably help you or point you in the right direction - don't hesitate to ask. Annette Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted January 14, 2011 Author Share Posted January 14, 2011 Good morning, Annette- Thanks so much for taking the time to read and reply to my story. I have my strong moments... and then I have my "breakdown" moments, too. Listened to some gospel music on the way in to work this morning, and just started crying out of the blue. But I'm trying very hard to stay focused on the task at hand: getting my dad to his appointments, helping him with his errands so he doesn't overextend himself, and making sure mom is taking care of him at home. I may be a bit "smothering" at the moment, but I think he understands. He told me last night that he hasn't told his brother about his diagnosis yet because "He doesn't need that right now." Apparently, my uncle is going through a lot of his own problems right now, and my dad said, "Besides that... I feel like I'm going to make it through this just fine." That's the first optimistic thing I've heard him say! And even if he doesn't really feel it, and is just trying to convince himself, that's fine with me. The more positive affirmations you make, the more you'll (hopefully) believe them. I plan to be a permanent fixture here! -Cathy Quote Link to comment Share on other sites More sharing options...
Bruce u Posted January 14, 2011 Share Posted January 14, 2011 Hi Cathy I think it is great that your Dad is getting in that fighting mode and talking in a positive tone. That will certainly help with going through the treatments. I'm sure there will be moments when things won't seem as rosy and that is where the caregiver's can really help out. Alot of us are permanent fixtures on this site. LOL But it is nice to talk with other members that "get" it. Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted January 18, 2011 Author Share Posted January 18, 2011 Hi everyone- Sorry for being MIA for a bit. Things have been a little hectic, trying to get all of these appointments and drivers scheduled. We've discovered that it would be easier to take it week-by-week. We are also having problems with my mom. We believe she may be in the beginning stages of dementia because she can't remember more than one thing at a time. She keeps saying (about dad's cancer treatments) "I have no idea what's going on..." and it only makes things worse to say, "Remember when I told you...?" because she never remembers. This is causing me a lot of anxiety with regard to dad's care at home, and how well she'll be able to care for him. There are substance abuse issues there, too, which she refuses to acknowledge or deal with. I'm feeling very overwhelmed at the moment. I guess the good news is that we finally got all chemo, radiation, bloodwork and doctor appointments coordinated and scheduled. My sis is with him at his first chemo appointment this morning. He checked in at 7:15...it is now 12:30 and he's STILL there! They said it would not be this long for future visits. They gave him a bunch of pre-chemo goodies (antinausea, Benadryl). My sis said he's not stopped talking all morning, even while under the influence of Benadryl! He said that he misses having "normal" conversations at home. I told her we just need to enjoy these times with him while we have him. Radiation appt. is in 2.5 hours. Bruce - I told dad about the side effect of Decadron being irritability, and my mom said "Oh, great!" I looked over at dad, and he was smiling... Crossing fingers and praying his side effects, if any, aren't too severe. Cathy Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted January 30, 2011 Author Share Posted January 30, 2011 Hi everyone Sorry for being MIA for a bit. Trying to adjust to my new schedule and new life, and it's taking some getting used to. Dad is going into his 3rd week of treatment. His first round of blood work after starting chemo came back great! His doc told him that his bone marrow must love the chemo because his numbers were even better than before. He's becoming a bit more fatigued, though, and Friday night was the first time the nausea really kicked in. His appetite was great up until Friday evening, and now he's not really hungry, but knows he needs to eat. I really think that there's a disconnect with my mom and this whole situation. She finally admitted that she can no longer pretend that he just has a bad cold. That said... I think that she can't bring herself to help him as much as he needs her to, because that would be acknowledging that he does have cancer. She's never been one to face problems and deal with them, (hence, the substance abuse issues i mentioned in my post above), so I'm really at a loss as to what to do. Any advice? Cathy Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 30, 2011 Share Posted January 30, 2011 Try this link for a little organizing help. Its a freebie too!! http://www.lotsahelpinghands.com/ as for dealing with the dementia/Denial, mom is probably very scared right now and is fearing the worst. Not sure how to handle that issue at moment. Hang in there!! Have to think about things to get an answer for you. Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted February 3, 2011 Author Share Posted February 3, 2011 Thank, Randy. My dad's lab work came back great again this week. However, he is now REALLY feeling the fatigue and "blah-ness". Today my niece took him to his radiation treatment, and he told her that today is one of those days where he's so thankful to have people driving him around. We also have a transport wheelchair in the back of his van in case/when he gets too weak to walk. He's got 4 more weeks of treatment to go....4 more chemos and 17 more radiations... and I just hope he makes it through without too much pain or discomfort. I wish I could take all of this away from him... His body is taking such a beating, and for a 77-year-old, he's taking it like a champ. I love my daddy... Cathy Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 4, 2011 Share Posted February 4, 2011 Cathy, somehow these have not come up in my "view new posts" window until today. Terrific on the good labs but I can understand how the treatment plan is wearing him down. I've been on treatment for years but nothing like the schedule your Dad is on. He is lucky to have you and you the people helping transport him. The docs are doing what they have to do and your Dad is doing his part just getting through it. That's what it's all about, we do what we have to do. I'm sorry about the situation at home with your Mom and are glad he has you and your sister to talk to. Judy in KW Quote Link to comment Share on other sites More sharing options...
Joppette Posted February 4, 2011 Share Posted February 4, 2011 Hi Cathy, Like KW Judy, I didn't see your posts until today or I would have definitely commented. I can relate to your situation. When my Dad was very ill with cancer, and going through treatments, it was a huge problem for my family. Both of them quit drinking when he was diagnosed, but as the treatments began to wear on him, she went back to it. I finally had to move into their home because Dad would fall asleep with a cigarette in his hands, almost burned up his favorite chair. That along with Mom's favorite medication, turned it into a full time job for me. I can see how much you love your Daddy in these posts. That's truly very special. I guess, just try to treasure those precious moments. How neat to hear how talkative he was in chemo, and how much he was enjoying the conversations with his daughters. That is just an incredible thing to read. Mi Judy Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted February 4, 2011 Author Share Posted February 4, 2011 Thank you, KW Judy and MI Judy. I guess I'm just having a hard time adjusting to seeing my dad in the state he's in. Then I have to remember to stop being selfish and think about how HE'S trying to adjust to all of this. It truly is a roller coaster ride of emotions. As for the rest of what I'm going through, that'll just have to be dealt with as it comes. MI Judy - thank you for sharing your story, which is VERY similar to mine. I just can't fathom having to move back home yet. My nerves will be shot, and I'll need intensive counseling. I'll post back when there's something more substantial to report. Don't want to spend a lot of time here moaning about things I can't change. Thanks everyone- Cathy Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted February 20, 2011 Author Share Posted February 20, 2011 Hi Everyone- Well, we've just finished the 5th week of dad's treatment, and the chemo side effects are definitely rearing their ugly head. He hasn't been able to eat or drink very much over the past couple of weeks, and has lost about 10 pounds. He's already pretty slim, so that's not good. Also, his blood pressure has been steadily dropping. Yesterday it was 76/50. His doctor told him to stop taking his BP pills to see if that would help. (It did. This morning it was back to normal.) I took him in to the infusion center this morning to get an IV with some multivitamins in it because he was so weak. We're trying to get him to understand that even though he doesn't have an appetite, he needs to force himself to at least drink something so he won't get dehydrated. I think his spirits are rather low at this point. He told me this morning,"This is hell." I try to cheer him up, telling him he only has 2 more chemo sessions and then he will get a well-deserved break. But I know all he can think about is the 2 additional chemos he will get in April... Full-strength ones... that I know will completely wipe him out. For those of you actually going through treatment: How long after you stop chemo do you start feeling human again? I need to give him some hope. We all feel so helpless, and my mom is feeling like she's not giving him the care he needs. I told her there isn't much else we can do, other than keep doing what we're doing. But I understand how she feels. Sorry this was so long. Thank you for listening. Cathy Quote Link to comment Share on other sites More sharing options...
ts Posted February 20, 2011 Share Posted February 20, 2011 Hi Cathy, I made it through my chemo two years ago without too serious problems, and did not have radiation concurrent, so I'm probably not much help. This round is manageable as well - I lose 5 pounds, put of 3, lose 7, put on 5...on my better weeks, I am eating fine and indulging (as always) in anything I like, including plenty of chocolate and ice cream. Keep snacks available to him all the time, and boost his milkshakes with protein powder or whatever is tolerated. I know I have lots of times I don't feel like eating, but keeping something in my belly is key for me. That's harder if he is experiencing throat or mouth problems. Is he going for 6 cycles of chemo? As far as I have read, 4-6 cycles with platinums is considered reasonable. If more than 4 is too much, he can say no (and I've known strong guys who've said no after 3.) Quality of life is part of the equation. This is something you might discuss with him and his oncologist. Bests Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted February 20, 2011 Author Share Posted February 20, 2011 Hi ts- Thank you so much for your reply. I'm still a little confused as to what a "cycle" of chemo is, but my dad has been undergoing one chemo session per week for the past 5 weeks (along with 5-day-a-week radiation sessions). He has 2 more chemos and 7 more radiations to go before he gets a break (between 3-4 weeks. I'm hoping for 4 weeks.) After that, he'll have two more chemo sessions, each about 2-3 weeks apart, so I'm guessing that counts as 2 cycles? His doctor told him yesterday that if his platelet count goes below 75, or if he starts feeling horribly weaker, he'll decrease his chemo dosage. (So far, though, his bloodwork is still really, really good. Platelet count has gone down, but is still in the 100's.) Doc tried to cheer him up a bit by telling him "Well, I can definitely see the light at the end of the tunnel here," but my dad who is normally cracking jokes and never being serious, barely said a word. He's been in bed most of the day today. I have a sneaking suspicion that if this first round doesn't significantly get rid of the tumor, he may stop after this. However, he may feel rejuvenated after the month's break, so we shall see. We're trying to keep snacks and juices at the ready, but since he's never been the type to "graze" throughout the day, getting into that habit is hard. My mom feels like she's nagging him when she tries to get him to drink or eat... he's crabby... etc. It's just really rough right now. I had a mini-meltdown tonight. I hold it in for so long that every week or two I just have to let it out. It didn't help that my brother gave me a new Tyler Perry DVD that involved a mother dying of cancer. I don't think he considered the subject matter... he just likes Madea! Thanks again- Cathy Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 20, 2011 Share Posted February 20, 2011 ts said: Quality of life is part of the equation. This is something you might discuss with him and his oncologist. Cathy, I definitely agree with that. I'll take it even further, and even though I can't prove it scientifically, say that being on a tolerable treatment and feeling relatively strong can be just as effective against the cancer as being on a rougher treatment and feeling lousy. For that reason, I've never hesitated to tell my onc I'd like to ease off a bit (either in dosage or schedule), and he's always accommodated my preferences. That approach has worked out well so far, and as they say, you can't argue with success. Here are a couple of rather long discussion threads between me and other patients/caregivers and some of the GRACE docs: http://cancergrace.org/forums/index.php ... l#msg18528 http://cancergrace.org/forums/index.php ... l#msg38110 And getting those calories in is important, even more important than a so-called "balanced" diet right now. Here's something I wrote back in 2007 about my eating difficulties while on Taxol: viewtopic.php?p=316878#p316878 I'm sending you a PM also. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
dianew Posted February 21, 2011 Share Posted February 21, 2011 Cathy - I just saw this thread, am not sure why it hasn't popped up before. I had what sounds like the same treatment your Dad is having - concurrent chemo/radiation, and then two high-dose chemo treatments three weeks apart after radiation is done. It is hard, and of course wears you down more the longer it goes on. But at the end, I had an excellent response and still remain stable two years later. I had to give up my blood pressure meds as well, and still do not need them. I had a hard time finding anything I could eat or drink, and finally when I found something I could tolerate I just existed on that. Probably not nutritionally recommended, but it got me through. Tell your Dad that it does indeed begin to get better after the last treatment. It takes awhile before you are feeling really "normal" again - but it does happen. Your Dad is very lucky to have such a caring daughter. Diane Quote Link to comment Share on other sites More sharing options...
Bruce u Posted February 22, 2011 Share Posted February 22, 2011 Hi Cathy I just had 4 rounds of chemo and no radiation. What I found and was told is that the drugs accumulate in your system. So the fourth round affected me more than the third. I think with the 3-4 week break, your Dad will be ready to tackle the next 2. But I also agree with the quality of life comment and your Dad should be the person to decide how many treatments that he is comfortable with. Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted March 7, 2011 Author Share Posted March 7, 2011 Ned, Diane and Bruce- Thank you all for your wonderful comments and support! Diane, I will pass on your story to my dad. It's always great to hear of someone who's gone through the same thing, and has come out fine on the other side. Dad just finished his 7 weeks of concurrent radiation/chemo treatment last week, so now he gets 4 weeks off before starting on the 2 cycles of full-dose chemo. I think he came through all this splendidly, aside from the diminished appetite, fatigue and occasional (though not severe) nausea. There was one day when his BP was ultra-low (77/56, or something), and he was very weak, so we took him in for some IV fluids (he got a second dose of fluids a few days later after chemo), and that seemed to perk him up a bit. Also, the day after the last chemo session, his Neutrophils (Absolute) value was a bit low, so he had to go in for a shot. He's lost about 8 pounds so far. Hasn't lost any hair (well, that we can tell... he's "follically challenged" to begin with). He's a bit obsessed about checking his BP since they took him off his meds, but I figure he's lost control over pretty much the rest of his physical health, we'll let him take his BP as much as he wants. LOL! Oh, and I think he does have a small case of "chemo brain" because he forgets things right away after he's told something. We just humor him... He goes back on 3/21 for a CT scan and bloodwork; will see his oncologist on 3/25 to make sure everything's okay; then he'll start his chemo the following week. He will also be getting that same shot the day after his 2 chemo sessions, to make sure that level stays normal. Ned - I printed out the information about your appetite issues for him, and he has it posted on his fridge at home. He said that was EXACTLY what was going on with him. Strange tastes and textures... all of that. Thank you so much for that. I hope you're doing well... This will be my first week without having to take him anywhere, and my first full week at work in over a month. All I really want to do is stay in bed and sleep for a day or so. -Cathy Quote Link to comment Share on other sites More sharing options...
Annette Posted March 7, 2011 Share Posted March 7, 2011 Cathy - work may seem like somewhat of a break it gets you at least out of "sight" of the worry that will no doubt be in the back of your mind. Do yourself a favor - relax a minute - take a minute for you - if you feel good - it will help your dad. I know that after I had my surgeries I felt like the mud on my shoes - but just hearing / seeing "okay" in my caregivers eyes made things better. Sounds like you have a strong disposition - so don't forget about you. Hope you find that everything has worked like it is supposed to work at the scan later this month! Annette Quote Link to comment Share on other sites More sharing options...
dianew Posted March 7, 2011 Share Posted March 7, 2011 Cathy - it sounds like your Dad is doing pretty well with the treatment. This break will be good for him, and good for you also I imagine - gives everyone a chance to catch their breath. Annette is right, you need to take a minute for yourself too. Thanks for keeping us posted. Diane Quote Link to comment Share on other sites More sharing options...
ts Posted March 7, 2011 Share Posted March 7, 2011 Hi Cathy, I third the idea of you taking a break for your self - work can be pretty overwhelming to return to, but maybe a good change of pace. Still, hope there is something fun planned for the weekend. Sounds like your Dad did a great job getting through the concurrent chemo/radiation. I am sorry I did not respond and added to the confusion regarding chemo cycles. I had 4 cycles of chemo - which was 2 infusions day one, one infusion day 7, no infusion day 14, repeat a week later for 4 cycles. The concurrent chemo is given as a smaller dose and typically once a week as radiation is done daily. And, as with your Dad, often followed by a couple of big mop up chemos. So I was talking about apples and oranges. Nice to humor his chemo brain - I played a game after dinner last night (Apples and Apples) - and it involved very short term memory skills - I really had to concentrate, and despite that, I won! But I can tell I have a bit of lint in my dryer screen. If you see Ned, please give him a very soft hug from all of us on the mainland. And one for you and your Dad too. Quote Link to comment Share on other sites More sharing options...
Cathyanne Posted March 7, 2011 Author Share Posted March 7, 2011 Annette, Diane, ts: Thank you all for your replies! I will definitely be thinking of something fun I can do for myself over the next few weeks. It's hard, though, when you're kinda broke... and don't have very many vacation days left at work. LOL! I love going to movies, but I can always talk myself out of it because they're so darn expensive - especially if you actually want to EAT anything! ts - no worries re: chemo cycles. I'm learning that there are SOOO many different types of treatment options. I'm one of those people who sometimes gets mixed up between "biennial" and "biannual", so when they tell me he's getting a cycle every 3 weeks, I have to think hard... is each one 3 weeks apart, or is the 2nd one done on the 3rd week after the first one... Maybe I have "chemo brain" by association? I do hope to meet Ned one of these days after his current treatment is done. If/when I do, I will give him a BIG hug from all of you. -Cathy Quote Link to comment Share on other sites More sharing options...
eric byrne Posted March 7, 2011 Share Posted March 7, 2011 Hi Cathy, I just want you to know,although I have not been active on your string I have been following your postings each day sent.My experience of Lung Cancer pretty much along the lines of Bruces and Buds,I did have one nearest lymph node involved though,chemo and surgery, escaped the bit radio therapy as we call radiation here in the UK.I felt I didnt have much to offer you regarding your dads treatments,particularly after reading the quality of the comments you have been receiving from everyone here.I just want you to know how much I have appreciated reading your posts,they are so supportive of your Dad,and so positive in their outlook,you are one special daughter.I do hope on all our behalves you get to meet up with Ned,please pass on my best wishes for him also as his treatments continue. Quote Link to comment Share on other sites More sharing options...
Joppette Posted March 8, 2011 Share Posted March 8, 2011 Hi Cathy, Thanks for keeping us updated on Dad. It all sounds like it's going very well. Yeah! Enjoy a break, and like the others said, do something nice for you. It does not have to be much. I find a lovely walk at sunset is an amazing gift. Or sitting with someone you love as the sun rises. The other day at night, we saw a moon with a halo around it. It was like someone gave us a gift. So lovely. As for chemo brain? Yes, YES and YES again. I still don't have the memory I had 4 years ago. Could it still be chemo brain? Or is it that I'm 56 years old. LOL! My husband had to hear a ton of stories two or three times because I had absolute no memory of the previous conversation. The nice part for me was that all of it was brand new and very exciting, as I told it again! LOL! Hugs to you sweetie, Judy in MI Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 19, 2011 Share Posted March 19, 2011 Cathy, I just noticed your Dad's scans are next week. You must be getting nervous--it's normal, we all experience degrees of what we can scananxiety. Here's hopes for the best for him. Do keep us posted on the outcome. Judy in KW Quote Link to comment Share on other sites More sharing options...
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