Adrian Posted July 2, 2007 Share Posted July 2, 2007 Hi all-- My dad has had his first round of carboplatin/gemzar and it has just knocked him out. He is so fatigued, has zero appetite, and his spirits are so low. I am in LA right now visiting him--and it is just making me so sad to see this. Eight weeks ago, my dad was running, swimming, teaching class...and today, it wipes him out to walk to the end of the driveway. I'm not sure if this is all a result of chemo, the combination of chemo and WBR, depression, or all of the above. My dad's onc. has suggested lowering the chemo dosage. This makes me very, very nervous...given my dad's cancer--Stage IV with brain mets.--I feel like we need to hit this cancer with everything we've got... Has anyone had any experience with lowering the strenght of the chemo? Any thoughts on how to make a decision like this? Finally, has anyone had experience with anti-depressants during chemo? My dad says that he is having very dark thoughts lately...and perhaps he needs something to take the edge off... Finally, my god, do I hate this illness...I hate it. I am so angry and so sad...it just takes my breath away that this has happened to my family. Thanks in advance for your thoughts. Leslie Quote Link to comment Share on other sites More sharing options...
ztweb Posted July 2, 2007 Share Posted July 2, 2007 Oh Leslie, I am so sorry that this is so hard. Please know you have my prayers. Chemo is terrible, but at least you know it is doing something in the body...try to have that be your bright spot! As far as the depression goes, my dad was on stuff. He didn't have dark thoughts, but he had depression...not so much anxiety, but more like the down-and-outs. He had it all through treatment, and after. I think he is off of them now, but he gets crabby, so mom might have slipped them into his pill regime each day . Stay strong and know we are here for you! Blessings, Jen Quote Link to comment Share on other sites More sharing options...
Adrian Posted July 2, 2007 Author Share Posted July 2, 2007 hah, my sister hijacked my account. zt, "the down and outs" are very close to what he has. Can you tell us what anti-depressant he was using, the dose and the side effects if any? Thanks, Adrian Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 2, 2007 Share Posted July 2, 2007 Adrian and/or Leslie: I went over to onctalk.com to see what I could find on the subject, then saw your detailed post there and Dr. West's answer. The Ativan part sort of jumped out at me. Is your dad still having nausea, i.e., in the last few days? If not, maybe he should back off from the Ativan as a first step, or (as Dr. West suggested) try something else for nausea. A number of people have had some rather strange side effects from Ativan (search the posts here for examples). I think it's largely intended for anxiety and, as such, helps with nausea too for some people. But I haven't noticed you mention anxiety as a problem, mainly fatigue and even depression, so I'm thinking Ativan is not a good choice and is just pushing him further across the fatigue line. When I first started chemo I was given a prescription for Ativan and was told to take it a few days after each infusion whether I felt nauseous or not, but after a couple of cycles with no nausea I mentioned that maybe I didn't need to keep taking it. So I stopped and the partially used bottle is still on the shelf. Come to think about it, though some of my side effects were at their worst in the later cycles, I only had that gray curtain, gotta-sleep-right-now fatigue during cycles 1 and 2. I wonder if it was the Ativan, which I really didn't need at all? Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Adrian Posted July 2, 2007 Author Share Posted July 2, 2007 Very interesting Ned, This is obviously a new bit of info that needs to be factored in. Ned, I have two hopes that have been with me all day 1. that dad's fatigue diminishes and 2. that your scan results come back excellent tomorrow. I want them both and I refuse to compromise! Best, Adrian Quote Link to comment Share on other sites More sharing options...
Welthy Posted July 3, 2007 Share Posted July 3, 2007 Adrian?? Leslie?? Both?? We never reduced the chemo for my husband because we wanted as much in there as possible fighting the battle for him. I know that with the carbo/taxol regimen, some people get smaller doses once a week for three weeks and then a week off instead of once every 21 days. They seem to fair better in the "knocked out" department. Maybe the doc can work something like that out for your Dad. I don't know if the gemzar/carbo schedule can be tweaked though. My husband did 12 cycles of taxotere/gemzar (day 1 both -- day 7 gemzar only) and it eventually knocked the crap out of him. This is a fairly typical reaction to chemo, so I share your worry about cutting doses. Maybe the Oncologist is looking at quality of life issues for your Dad. Does your Dad's blood work look okay? Is he getting Procrit or Neulasta to help beef up counts if he needs it? I agree with Ned and wouldn't take Ativan if he isn't antsy either. It will add to the fatigue. Tony rarely took that, but the Alimta gives him a case of the fidgets, so he takes a couple after chemo now. Other than that, one of my friends tells me that she thought anti-nausea medicine made her tired. It's hard to tell in Tony's case as he is pretty tired most of the time. I know it is so hard to see someone you love change so dramatically, but that is what cancer/chemo can do to a person. Part of the "new normal" that we all talk about here. Good luck with a game plan. Welthy Quote Link to comment Share on other sites More sharing options...
Adrian Posted July 3, 2007 Author Share Posted July 3, 2007 we know nothing about my dads blood counts at the moment. Perhaps that's because he has had only one cycle of Carbo/Gem---though they might have done some bloodwork in between the carbo and gemzar infusions so there might be blood data that I don't know about. I guess this Thrusday we'll be finding out about something from his blood counts. Thnaks for your valuable input Welthy. Quote Link to comment Share on other sites More sharing options...
blueeye Posted July 3, 2007 Share Posted July 3, 2007 I just wanted to add that we don't have experience with WBR yet, but Mom did have 4 weeks of very strong radiation to her chest and neck. And she was also having chemo at the same time. She was really, really wiped out. She is tired alot now...but nothing like with the radiation. Just because we can't "see" the radiation doesn't mean that it's not doing alot of damage to both good and bad cells. And those good cells have to regenerate. That takes alot of energy. That's my two cents worth anyway. Also, the oncology nurses wanted to give Mom Ativan for her nausea but she wouldn't take it. They highly recommended it. Seemed odd to me to take it for nausea, but what do I know? Lots of stuff is used "off label". Quote Link to comment Share on other sites More sharing options...
tiredmom959 Posted July 3, 2007 Share Posted July 3, 2007 My mom didn't have radiation; however, after the first chemo, she had this issue with persistent yawning (to the point I asked the onc if he'd do a brain MRI, I thought it might be neurological or some type of involuntary response from the brain). No doctor would figure out why she was yawning. It turned out clear, but he gave her Ativan, thinking it may be anxiety following the diagnosis she'd had, and the anxiety was making her yawn. When she took the Ativan, it knocked her out like nothing else. She did NOT like the way it made her feel and the yawning just stopped on its own. Quote Link to comment Share on other sites More sharing options...
Don M Posted July 3, 2007 Share Posted July 3, 2007 I took lexapro for depression for the first couple of years. I think it helped. I don't take it now. So, your dad did not recover from the infusion by the 3rd week? When I did chemo I was wiped out for the first week or 2 and was nearly back to feeling good by the time of the second infusion. My first chemo was 4 rounds of carboplatin/gemzar. One thing to consider is to go for 4 rounds instead of 6. My oncologist told me that the benefits from the 5th and 6th rounds are marginal. I did only 4 rounds because my treatment was for adjuvant purposes following surgery. Don M Quote Link to comment Share on other sites More sharing options...
kaneohegirl Posted July 3, 2007 Share Posted July 3, 2007 they gave my dad a lower dose this last time... still knocked him on his butt...I think he might have done better with the higher dose since his body was used to it...but what do I know... Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 3, 2007 Share Posted July 3, 2007 My mom is also on the carbo/gemzar. But she only had the Ativan the first time. They didn't give it to her the 2nd week & not sure if they'll give it to her this week since she's getting both the carbo/gemzar again. It sounded as though it was for "first timers" of chemo. But she doesn't want it again. It knocked her out. I mean, it was fine to sleep for the 2 hours of chemo....but she said she can nap without it. I don't know anything about it really....just adding my 2 cents after reading other people's posts on the subject. But now I will keep an eye on my mom's state of mind. So far no depression -- but I will read up more on Ativan if this has anything to do with depression. It's supposed to help with depression, isn't it??? Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 3, 2007 Share Posted July 3, 2007 "tjrasMOM" ...So far no depression -- but I will read up more on Ativan if this has anything to do with depression. It's supposed to help with depression, isn't it??? I was going to answer back and say that didn't sound right, since if it's for anxiety, it would be giving a calming effect or depressing the nervous system, which you don't want to do if you already have depression. But what do I know, so I googled it and came across this in MedicineNet.com: SIDE EFFECTS: The most commonly noted side effects associated with lorazepam are sedation (which is reported in approximately 1 in 6 people), dizziness (1 in 15), weakness, and unsteadiness. Other side effects include a feeling of depression, loss of orientation, headache, and sleep disturbance. And this: Like all benzodiazepines, lorazepam can cause physical dependence. Suddenly stopping therapy after a few months of daily therapy may be associated with a feeling of loss of self-worth, agitation, and insomnia. If lorazepam is taken continuously longer than a few months, stopping therapy suddenly may produce seizures, tremors, muscle cramping, vomiting, and/or sweating. Okay, so it can make you sedated and feel depressed, and if you take it too long and stop suddenly you can become agitated and worse. But then look at this: Lorazepam is used for the management of anxiety disorders, the short-term relief of the symptoms of anxiety or anxiety associated with depression. Doesn't that take the cake! You're depressed, and you get worried and anxious about that, so you take Ativan for the anxiety, knowing that a side effect is depression. That's too much for my feeble chemo brain to comprehend, and the rest of my half-used bottle just went into the trash. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
kaneohegirl Posted July 3, 2007 Share Posted July 3, 2007 ummmm anyone taking ativan for anxiety might want to consider Xanax.... I know Dr's perscribe certain things for certain reasons but Xanax is a nice little make everything calm pill. sleepiness being the main side effect that I notice. just a thought. Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 4, 2007 Share Posted July 4, 2007 I took wellbutrin for depression and xanax for anxiety. I still take them. The xanax helps me to calm down at night to sleep and the 1/2 life of it is much less than ativan, so you don't feel sedated when its time to get up in the morning. If it were me I would be looking for quality of life as well as quantity. Perhaps decreasing the dose is what is called for at this point. WBR by itself can cause extreme tiredness and with chemo it works even harder on the body. Ask the doctor about reducing the dose of chemo while on WBR and perhaps increasing it again when he is over that ordeal. Remember that radiation is the gift that keeps on giving so he may be very tired for a while. Nina Quote Link to comment Share on other sites More sharing options...
Leslie Posted July 7, 2007 Share Posted July 7, 2007 I just want to express my deepeset appreciation and thanks for all of your thoughtful responses. As Adrian mentioned, my dad had his second chemo treatment yesterday and he feels great! We have discontinued the atavan (sp?) and he has started small daily doses of decadron. The change is like night and day....he took a walk yesterday, went to the movies today, and ate a great dinner yesterday and today. For the first time in weeks, we were able to talk politics, talk about cancer, just talk about more than his physical condition. I treasure having my dad back... Once again, thanks to all. Sending strong positive thoughts to everyone tonight. Leslie Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 7, 2007 Share Posted July 7, 2007 Ned, Yes I agree. Isn't it irionic that when people are depressed, many of the side effects associated with anti-depressants......are more chronic depression??? As for being "knocked out", my mom has had a hard couple of weeks. The chemo is doing it's thing and has wiped out all of her energy. So, this past Thursday when she had her 2nd round of the carbo/gemzar combo, they also gave her something to give her energy. Unfortunately, I did not write down the name of the drug. The nurse told her that it would sting when she administered the shot....she said it would feel like a bee sting.....but my mom, with her great sense of humor said, "SH**! That was more like a hornet!!" The nurse warned her that side effects would include pain in the bones for a couple of days as the drug goes into the bone marrow helping aid a red blood cell boost. So, yesterday a friend of Mom's picked her up & "stole" her for a couple of hours. The friend put Mom out by her pool, catered to her, let her read her book & just enjoyed some ladies' time. Mom had fun. But this morning when I talked to Mom, she said that she tossed & turned all night. She feels incredibly achy in her bones & just can't rest. I reminded her that these were the side effects we were told about & that the nurse also told her to take Tylenol for the pain. The nurse also said that it would only last a couple of days. Unfortunately, my mom has never been very good at taking care of herself. If she's sick...she doesn't take off from work...if she's in pain, she doesn't take the Tylenol....she just won't take anything to help herself.....unless of course myself or other family members REMIND her. =) She's a little stubborn. Quote Link to comment Share on other sites More sharing options...
blueeye Posted July 7, 2007 Share Posted July 7, 2007 Tjrasmom, That shot sounds like Neulasta--but it's for white blood cells. The nurse told Mom she would feel like a train had run over her. She told her that AFTER she injected it! (I felt like that when I saw the bill! I would be nervous injecting something that cost that much!)She ached for about a week. And like your Mom, she doesn't want to take any more medicine. I have to remind her to take ibuprofen. She gets Procrit for her red blood cells and sometimes has achy joints but they didn't warn her about that...we just put it together when one of her arms swelled. It seems to affect a different joint each time. Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 7, 2007 Share Posted July 7, 2007 I thought Neulasta was the anti-nausea med? Quote Link to comment Share on other sites More sharing options...
kaneohegirl Posted July 8, 2007 Share Posted July 8, 2007 "tjrasMOM"]I thought Neulasta was the anti-nausea med? nope... neulasta is to boost the white count production... they give benedryl and something starting with P cant think of it right now. Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 8, 2007 Share Posted July 8, 2007 OK, well I'm not sure if I should tell Mom that she just received the very expensive med (Neulasta) because all this time she thought the anti-nausea was the very expensive stuff. On one hand she might be relieved to know that she's only had the expensive stuff once....but on the other hand she might never ask for it again. =) Quote Link to comment Share on other sites More sharing options...
Adrian Posted July 9, 2007 Author Share Posted July 9, 2007 update: Its four days post his 2nd gemzar/carbo/avastin cycle. He's taking 2 mg. of decadron a day. His energy levels remain solid and his appetite up. Really seems like the growing distance from WBR + being off ativan + being on decadron have made a major differnce as he had an active weekend (within throwing distance of pre-dx levels). And with returned energy levels and increased appetite he has also become a better more proactive cancer patient. He is now keeping a food and drink log. Assuming his energy is still up this evening, I'm going to put him on a very light (<10 lbs)weightlifting regimen to see if we can't get some muscle back on his frame. I'd like to keep riding this wave for a while if you don't mind. Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 9, 2007 Share Posted July 9, 2007 Hey, Adrian, sounds like you've got your dad back, and for his part, he can enjoy basking in normalcy! I know I lost a LOT of muscle mass very fast after my thoracotomy and while on chemo, and only in the last couple of months have I been able to start putting it back on. Now I can do about as much with my 15-pound bar that I could before, which was not all that impressive, I admit. But it sure feels good. Was wondering if the onc said how long he plans to keep your dad on the 2mg of Decadron. My only experience with it was once every 3 weeks in the premed IV bag. I know some who were on the oral form for a while developed side effects and/or had trouble getting off of it, but that was probably a larger dose. Of course some people react to medications at much lower doses than others, so it's probably something to keep in mind. Yep, you guys have caught a nice wave. When it gets close to shore you can avoid a wipe-out by dribbling off the end and paddling out for another one. A few more waves and these treatments will be over! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
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