melaniem Posted October 27, 2004 Share Posted October 27, 2004 I had my first chemo last Monday and was sick the entire week. I had cysplatin/taxotere. I am supposed to have 3 more treatments but really don't want to. I had my mind made up yesterday that I was stopping the treatments. But this morning I did some research via the net and found a study backing up my onc's claim that chemo w/surgery is beneficial and has become more and more the norm. My onc and his staff are pleading w/me to continue, promising they can pull rabbits out of a hat and keep me from getting so sick next time. (OK, they didn't promise, but said they would try). I know this is the best in the long run, i'm just having trouble seeing the forest through the trees. Does anyone know a trick to get rid of this nasty film/coating in my mouth? Even water tastes funny. My beloved coffee....forget it. Even tried a beer last night but that was really gross. Maybe I should try Jack Daniels, Crown & Coke, Peach Scnapps............hee heee, hey at least I'd be sick by my OWN doing, right?? Any comments are appreciated, it's nice to hear from those who've been there. Also, about fatigue. When you do chemo, does the fatigue get continually worse or is the fatigue that I feel now about as bad as it gets? I'm to do chemo until mid-January and wondering if I'll be able to keep my eyes open during Christmas. Thanks, guys, Mel Quote Link to comment Share on other sites More sharing options...
Mr Ry Posted October 27, 2004 Share Posted October 27, 2004 Mel Jack Daniel's helped me. I do not know if it fixed the nasty taste in my mouth, but I really did not care. Gin was good in the summer. The fatigue never got worse and it went up and down with each treatment. The doctors should be able to help with both the fatigue and the vomiting. Good luck on your journey through Christmas and the new year. Remember there is an end to the treatment to look forward to. John Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 27, 2004 Share Posted October 27, 2004 Melanie, I did not do chemo, so cannot give advice on how to get rid of the taste. For the metallic taste during radiation, sucking on Altoids tangerine sours helped - for a while, then tasted like nasty cough drops. I know you're sick and you don't want to continue, but please do. I was not given the option, my oncologist told me that there was no proof that chemo helped in lung cancer patients enough to offset the side effects - and the second opinion I received wouldn't even recommend radiation! Had I been given that option, I would have pursued it. As for the Christmas season - figure out what parts are the most important for you and save your energy for those activities. Let someone else fuss with the "Big Family Meals" that are the center of many celebrations - supply the punchbowl or something easy. This is a year for you to just "coast" and let the others do the work. The important part is that you will be there for the celebration...in comfy clothes and fuzzy slippers! Set your big goal and some milestone steps to celebrate - something fun at the halfway point (maybe a pedicure?) that doesn't expend a lot of energy. Give yourself something tangible and immediately gratifying, not just the "higher odds" that you cannot see right now. Pull on your boots and start kickin'! You've already got one under your belt! Wa-hoo!! THERE'S a small milestone to celebrate...raise your glass and salude! xxoo, Becky Quote Link to comment Share on other sites More sharing options...
chloesmom Posted October 27, 2004 Share Posted October 27, 2004 Melanie, I think you should reconsider and finish the chemo. Yes, it's tough, and it has those nasty side effects that no one really has a solution for, like the taste in your mouth, but you need to give this battle everything you've got right now. I remember the bad taste in your mouth, and try the tangerine Altoids, they might help. I also think a lot of water helps with a whole lot of those symptoms. When I got sick of water, I drank Crystal Lite, or anything without caffeine. As far as coffee goes, once I quit smoking, my taste for coffee declined a lot. I used to drink coffee every day, all day long. Now, it's one cup in the morning out of habit mostly, and that's about it. But, that's not a bad thing either. I finished chemo about a year ago now--November 6 to be exact--and I hated every minute of it going through it, but I am very glad I finished--please reconsider--it does have an end. As far as holidays go, advice you've received already is right--let others do the bulk of the work this year--your purpose is to enjoy the holidays this year and stay rested. It's ok, give yourself a break this time around. One thing I would recommend--take the anti-nausea medication before you need it--I took it faithfully as directed for 3 days after my treatments and that kept me from getting really sick. Good luck to you--i sympathize with your feelings--I've been there too, but you need to do what you can and do it now. Cindy Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 27, 2004 Share Posted October 27, 2004 That coating on your tounge may be Thrush (a yeast infection). So you should be calling your Onc and asking if they can evaluate and treat it if that is what it is. Thrush isn't something you want to let go too long. Rinsing your mouth with baking soda and warm water several times a day will help to keep your ph in balance. The coating can also be caused by dehydration. Keep drinking the fluids. If you're having trouble keeping things down then you may want to make up some ice cubes using 1 part water, 1 part Gaterade in it's least obnoxious flavor, and a pinch of salt. Freeze, and when you need it crush it and take it ice chip by ice chip. If you really can't hold anything down ask for IV hydration. I truly believe that had I been given chemo after my first lung cancer surgery (as I had begged for them to do), I would not have recurrent cancer today. It's hard...but if it works it will be worth it to you. Best Wishes Quote Link to comment Share on other sites More sharing options...
Joe B Posted October 27, 2004 Share Posted October 27, 2004 I know that Zofran is one agent that works well. I used a new one (don't rember the name).. it was very expensive (luckily it was covered) I think around $100- 150 per day (a single tablet taken before IV chemo). If I think of the name I will re-post. Here is a link on this topic http://www.mesothelioma-cancer-treatmen ... ancer.html Joe Quote Link to comment Share on other sites More sharing options...
Nancy B Posted October 27, 2004 Share Posted October 27, 2004 Hi Melanie, I was on a different chemo but my first week I was VERY sick. I was taking Kytril for nausea and also getting it IV with the chemo. It didn't work. I was also severely dehydrated so they filled me full of IV fluids and I felt a bunch better. So from then on, on the fourth day after chemo they brought me in for IV fluids and changed to Zofran and it worked wonders. I had chemo 3 days straight and went in the 4th day for IV fluids and anti-nausea meds, repeated this every 21 days. Please do continue the chemo, it is nasty but necessary. I like Becky's idea of coasting through the holidays. I am doing PCI right now and not feeling too good and Thanksgiving is always at my house. Maybe not this year. Just try to stay hydrated. Jello and pudding always seem to settle well, not very nutritious, but try Ensure or one of those to get the nutrients you need. Wish I could be of more help - but just stay with it, it will get better. Hugs and Prayers to you Nancy B Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 27, 2004 Share Posted October 27, 2004 Hi, Melanie! Yep, your scenario is pretty normal. Lucie had a similar combination of chemo and it made her very sick, very tired. She got practically every side effect listed during the course of the chemo. BUT, it nailed that suckeroo! Loss of appetite is quite common,but you need to drink plenty of liquids and get proper nourishment nevertheless, so you can fight the beast. We found that meal snacks every two hours does better than three squares that you normally do. More apt to eat, and keeps something on the stomach to minimize nausea. Good lucik! Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 27, 2004 Share Posted October 27, 2004 Vomiting should be controlable..talk to ONC and don't take "Dunno" for an answer. Fatigue varies, I never found it to be cumulative, pretty repeatable.....treatment on Tues.....started getting fatigued Fri PM....Sat pretty whipped.....Sun PM started feeling better...Mon fine. No two people are the same, however. Vomiting will definitely add to the fatigue. jim Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 27, 2004 Share Posted October 27, 2004 The one thing that has helped me these last seven months is knowing we tried everything to beat the cancer. I say if it gives you a .1% better chance of beating this thing, it is worth going for it. I was a caregiver, so I never got to worship the porcelain, but it sounds like a normal process. Becky never had too much trouble with the symptoms you talk about, so i don't have any advice there, but you have already gotten some good stuff. Go for it! Best wishes, Curtis Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 28, 2004 Share Posted October 28, 2004 All good answers above.. Try to get the kids to help out with the household chores as they can. I modified my activities so that I could reserve energy and not get so pooped out. I sat to shower, moved slowly, dried off sitting down, rested in between pieces of clothing as I dressed. Didn't make the bed. Used the handrail to walk slowly up the stairs. Drank lots of water when I could remember. I bought those little dixie cups and evertime I was in the bathroom, it was a rule that I drink at least one of those. Same thing at the kitchen sink. Hydration and good nutrition are critical. Try to give it one more try. See how it goes. Good luck with everything...PS avoid alcohol mouthwashes...Biotene is a good one and a very soft toothbrush with a mild toothpaste. Quote Link to comment Share on other sites More sharing options...
melaniem Posted October 28, 2004 Author Share Posted October 28, 2004 Thanks to all. I was on Zofran continuously, also Fernagan. This time they will try Amend, must be expensive because they are working on pre-approval from my insurance now and it's still 10 or 12 days away. Yea, I know I have to finish this stuff. I realize that as bittersweet as it sounds, I am one of the lucky ones. I'll do chemo and I'll finish these 3 rounds so I can see grandkids someday and all the other good stuff. I'm only 37, have lots of living left to do. I love you all, good luck to each of you. Have a wonderful day. Melanie Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 28, 2004 Share Posted October 28, 2004 The Emend is a great idea, it is super expensive but works fabulously for the cisplatin nausea (which is what you are experiencing). If insurance won't pay for it, we have gotten the drug company to give us samples. Aloxi is another drug that can really help with the delayed nausea, it is used in place of Zofran. Finally, if all else fails, Marinol can help especially in younger patients. It is basically marijuana pills but can make you feel a little stoned..... Quote Link to comment Share on other sites More sharing options...
Joe B Posted October 29, 2004 Share Posted October 29, 2004 Melanie, YES! Amend is what I took... it worked great... did have some feeling of sickness, but not much at all. I never actually got sick (if u know what I mean). Quote Link to comment Share on other sites More sharing options...
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