AngelL Posted October 5, 2020 Share Posted October 5, 2020 So I've just survived (barley) my 1st round of the triplet. (Carboplatin, Alimta, Keytruda) Maybe I'm being dramatic...negative...Whiney...? But how do people make it through? Especially those of you who do chemo weekly? Please tell me it gets easier? or harder so I can be prepared. I feel so bad for complaining but..... I'm set up for 4 rounds, (one every 3 weeks) and if it gets much worse than this I just don't know. Day 3 and 4 were the worst. Extreme fatigue ( I slept on the front stoop once) , awful awful body aches. And the cherry on top?! Now no food tastes good. My mouth hurts and the skin is literally falling away from the inside of my lips. My skin in general feels like I have sunburn and it hurts to touch my face (guess thats a positive with Covid) . I could go on but I'm sure you all know. This is so ...(1st world problems? ) but I think the most depressing part has been not enjoying food. I went into this thinking even if I was bed ridden that food would be something I could enjoy. Eating whatever I want, whenever and all of it because...well... but nope.... I'm too tired to walk to the fridge! So any tips on food that I may still find tasty? Anything that may help soothe my skin and mouth? .... Tips on how to toughen up because so many people have it so much worse?....greatly appreciated Link to comment Share on other sites More sharing options...
LexieCat Posted October 5, 2020 Share Posted October 5, 2020 I'd let your doctor know about these effects. I asked if there was something I could take if there was a rash, and they told me not to try to treat it myself but to let them know and they'd suggest/prescribe something. I know there's something called "Magic Mouthwash" that is available only by prescription that helps a lot of people. I've been lucky so far--I'm on the exact same regimen and the only problems I've had are exhaustion and brain fog, and constipation that hit because I was taking Zofran when I didn't really need to. I did have a few little skin bumps on my face/neck but they disappeared on their own in a few days. I'm not positive they were related to the chemo but given that they appeared and disappeared at roughly the same time, I'm assuming that it was. I wouldn't characterize it as a rash, really, more like just random bumps. I may be speaking too soon--I've got my second infusion coming up on Friday. Link to comment Share on other sites More sharing options...
DebM Posted October 5, 2020 Share Posted October 5, 2020 I don't know if this will help, but my oncologist recommended rinsing my mouth with salt, baking soda and warm water before I started chemo and every day throughout the process. I didn't have mouth sores but since everyone seems to have different side effects I'm not sure the rinse prevented them. The chemo nurses recommended sucking on Lemon Head candy to get rid of the metallic taste related to cisplatin/carboplatin. It may help with the bad tasting food??? I also had the red face. I would look sunburned for a few days after chemo, but it didn't hurt to touch. You aren't being whiney, the exhaustion is real! I would sleep for almost 24 hours straight on day four after chemo. It was a hard crash after the steroids wore off. The good news is that after a week or so you will probably start feeling much better and have a couple of good weeks to get back on your feet. Link to comment Share on other sites More sharing options...
BridgetO Posted October 5, 2020 Share Posted October 5, 2020 LexiCat is right: call your doctor and ask what to do about all this. It's fine to whine when you need to. It's also fine to ask for help from the medical people. You might ask for a referral to an oncology nutritionist. There are drinks that are formulated to soothe and to taste OK. Hang in there, Angell. Bridget O Link to comment Share on other sites More sharing options...
Judy M2 Posted October 5, 2020 Share Posted October 5, 2020 I found that MuGard was very effective for mouth sores. Swish several times a day and you can even swallow it. I also had a metallic taste for months from the carbo, but it goes away eventually. Change in taste too, so eat whatever you can tolerate so you don't lose too much weight, and you can supplement with Ensure high protein or Boost Soothes. Treatment is difficult for sure. The fatigue is unfortunately par for the course. Definitely tell your oncologist about all your side effects. They (especially the nurses) have lots of suggestions. Hope you feel better soon. Link to comment Share on other sites More sharing options...
Deb W Posted October 5, 2020 Share Posted October 5, 2020 Hi Angel, Oh my goodness, I felt the same way - I've never been a whiner, but that triplet was intense. I can relate to most of what you're experiencing. I had the triplet every 3 weeks for 4 weeks and made it through and you will too. I totally get the fatigue and loss of appetite (nausea for me was intense). I think you might feel better by day 7 -8. I remember being so sensitive to scent that I would be in the living room and I could smell the scrubbing bubbles toilet bowl cleaner in the bathroom and had to remove it. I couldn't stand my favorite scents, hated the taste of bread (usually love it). Everything was thrown off in terms of taste and smell. It really will pass after a while. I experienced these symptoms each time I had the triplet. The point is that you will survive it. As the days go by you will see an improvement in your symptoms and food will taste good again! Always check in with your oncologist regarding the side effects. I wish you all the best and feel hopeful that you will get through this. Deb Link to comment Share on other sites More sharing options...
GaryG Posted October 5, 2020 Share Posted October 5, 2020 I had my forth round 2 weeks ago and reading your post made me relive my first round of the triplet. I hope you have the same luck as I did because my subsequent infusions become gradually free of side effects except for little fatigue. As for the lack of appetite and hate of anything eatable you need to drink 'Boost Plus' that has 360 calories instead of Ensure. If sugar is a problem you can purchase a protein from Costco that has less sugar. No matter what it is extremely important that you keep your weight. The good news is that you oncologist can prescribe a medication called MEGESTROL ACETATE ORAL SUSPENSION or something similar that will restore your appetite and smell to normal. A WARNING however that this medication causes blood clots if you are inactive . Please also note that I am not recommending this medication. I am sharing what my Oncologist prescribed for me.. Many of us had positive results from the triplet so regardless of what we experienced it was well worth it and the results beat the alternative. I hope your side effects diminish the same way mine did. Please hang in there and good luck. Link to comment Share on other sites More sharing options...
Deb W Posted October 6, 2020 Share Posted October 6, 2020 I agree with Gary that the side effects (at least for me) are well worth the results! After 4 triplet treatments I had a clear scan and I've been on maintenance (Alimta & Keytruda) for the past 12 weeks. Link to comment Share on other sites More sharing options...
SamGirl50 Posted October 6, 2020 Share Posted October 6, 2020 Stay positive and hang in there. Hopefully it will ease off. Link to comment Share on other sites More sharing options...
LexieCat Posted October 6, 2020 Share Posted October 6, 2020 9 hours ago, Deb W said: I agree with Gary that the side effects (at least for me) are well worth the results! After 4 triplet treatments I had a clear scan and I've been on maintenance (Alimta & Keytruda) for the past 12 weeks. Hey Deb, how are you finding the maintenance protocol, compared to the initial triplet? Do you know if the dosage of Alimta and Keytruda are the same for you now as they were during your initial treatment? Just curious--I know everybody's treatment/response/side effects are unique, but just wondering how maintenance will look/feel. Link to comment Share on other sites More sharing options...
Deb W Posted October 6, 2020 Share Posted October 6, 2020 Lexi, maintenance is a little easier. At first it was great - no side effects but then at day 4 I felt them and they lasted until 12 (that was the first time it lasted for 8 days). I wondered about the possibility of cumulative effects from the chemo. I will tell you that by day 12 I feel like myself again and I'm able to resume exercise (not the same intensity before cancer), have a good appetite and higher energy level. Maybe that's why it is so upsetting when the side effects hit - knowing that I was feeling so well and then having those side effects again. The Alimta dose is the same at 500mg. I am not certain about the dose of Keytruda as it's not indicated in my chart. I thought I recall that he planned on keeping the Keytruda at the same dose as well, but I'm not positive. Link to comment Share on other sites More sharing options...
GaryG Posted October 6, 2020 Share Posted October 6, 2020 My first maintenance infusion will be on Thursday. I will make sure to ask the question about Keytruda providing it is the same for everybody.. Link to comment Share on other sites More sharing options...
Deb W Posted October 6, 2020 Share Posted October 6, 2020 Lexi, maintenance is a little easier. At first it was great - no side effects but then at day 4 I felt them and they lasted until 12 (that was the first time it lasted for 8 days). I wondered about the possibility of cumulative effects from the chemo. I will tell you that by day 12 I feel like myself again and I'm able to resume exercise (not the same intensity before cancer), have a good appetite and higher energy level. Maybe that's why it is so upsetting when the side effects hit - knowing that I was feeling so well and then having those side effects again. The Alimta dose is the same at 500mg. I am not certain about the dose of Keytruda as it's not indicated in my chart. I thought I recall that he planned on keeping the Keytruda at the same dose as well, but I'm not positive. Link to comment Share on other sites More sharing options...
Deb W Posted October 6, 2020 Share Posted October 6, 2020 Sorry for the duplicate. Gary, good luck on Thursday. Based on what you experienced with the triplet, it looks like smooth sailing for you. I will have my 4th maintenance next Tuesday. Deb Link to comment Share on other sites More sharing options...
GaryG Posted October 6, 2020 Share Posted October 6, 2020 55 minutes ago, Deb W said: Sorry for the duplicate. Gary, good luck on Thursday. Based on what you experienced with the triplet, it looks like smooth sailing for you. I will have my 4th maintenance next Tuesday. Deb Hi Deb: Compared to other posters I had very mild side effects not counting the first infusion. To tell you the truth that makes me nervous waiting for the other shoe to drop. I am not pessimistic and I am not afraid because when I follow your journey I see hope. I am your fan and will be thinking about you hoping and praying that your next infusion will not have any side effects. Thank you always for sharing your experiences. Link to comment Share on other sites More sharing options...
GaryG Posted October 8, 2020 Share Posted October 8, 2020 On 10/6/2020 at 12:37 PM, GaryG said: My first maintenance infusion will be on Thursday. I will make sure to ask the question about Keytruda providing it is the same for everybody.. Reporting from the infusion chair. Port flush 10 mn, keytruds 30 mn, port flush again 10 mn, Altima 10 mn for the toal of one hour. Link to comment Share on other sites More sharing options...
Deb W Posted October 9, 2020 Share Posted October 9, 2020 No steroids? Link to comment Share on other sites More sharing options...
JamesB Posted October 13, 2020 Share Posted October 13, 2020 Thanks AngelL for starting this thread. Was just on my way to post as I feel really bad and it's getting hard to take. I have no appetite and was cravig water which tastes crappy too. Got a pill yesterday for some kind of fungal thing going on in my mouth,nurse said once that dies down things might get a bit back to normal. This is my 2nd round,was ok first 2 days but these last 2 have sucker punched me. Tell me it gets betterr.... Link to comment Share on other sites More sharing options...
GaryG Posted October 13, 2020 Share Posted October 13, 2020 On 10/8/2020 at 9:30 PM, Deb W said: No steroids? Surprisingly not. I did not even think to ask at the time. Link to comment Share on other sites More sharing options...
AngelL Posted October 13, 2020 Author Share Posted October 13, 2020 On 10/5/2020 at 10:24 AM, LexieCat said: Hi, Thanks for all of the advice/info. Sorry it took me so long to respond. Im still learning how to use this site/blog/forum? Technology hates me. Good news, I feel much better for now. My side effects seem to morph every few days and now Im just itching. Ill take it over mouth sores, body aches, fatigue. I called the doctor and got meds for the itching today. Also the magic mouthwash is magic! I've gained a few pounds from eating nothing but mashed potatoes for a week. Looks like I will be the 1st person in history to actually gain weight on chemo. 3 more cycles hoping I have a complete respoinse and that my side efefcts lessen each time. Wishing the same for everyone else. Link to comment Share on other sites More sharing options...
BridgetO Posted October 14, 2020 Share Posted October 14, 2020 Hi Angell, I'm happy to hear things are looking up! Bridget O Link to comment Share on other sites More sharing options...
LexieCat Posted October 14, 2020 Share Posted October 14, 2020 You won't be the first to gain weight on chemo--seems like all comfort food is high-calorie. I've been eating pizza, mac & cheese, potatoes in any/all forms, grilled cheese, patty melts, etc. I've been going with whatever is appealing and just limiting the quantities so I don't gain too much! Link to comment Share on other sites More sharing options...
LouT Posted October 14, 2020 Share Posted October 14, 2020 Lexie, You left out my favorite "weight gain food" (although mac&cheese is right up there)...Ice Cream! I'll take just about any excuse to eat it. On the other hand you're smart to keep tabs on what and how much you eat. Lou Link to comment Share on other sites More sharing options...
Sabacat Posted October 15, 2020 Share Posted October 15, 2020 And peanut butter! Link to comment Share on other sites More sharing options...
LexieCat Posted October 15, 2020 Share Posted October 15, 2020 22 hours ago, LouT said: Ice Cream! I didn't mention ice cream primarily because it's already a daily thing with me. My usual bedtime routine is to bring a small cup of ice cream (or a couple of the mini ice cream bars) to bed with me, along with a glass of iced tea. I eat the ice cream, and read for 10 mins or so till my eyes drop. I've managed to work it into my diet so it doesn't put me over the top--at least under normal circumstances. Link to comment Share on other sites More sharing options...
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