Sabacat Posted October 24, 2020 Share Posted October 24, 2020 Wow, what a difference!! My side effects had been fairly minimal (aside from the stroke, of course) up til now, but round 3 (Oct 19) has been a bear!!! Same pre-meds (NO B-12, which I'm questioning now), Carbo/Alimta/Keytruda. Started out by NOT having my usual breakfast cereal (I pack it along for consistency) because we had a different (TERRIBLE) hotel and were short of time. Not sure if that had any bearing on the results, but... Post-infusion Day 1 and 2 were fine, as usual, except I got terribly constipated (NOPE, I didn't take any Zofran except the 16mg I got with premeds). On both days, I added an extra dose of MiraLax in the evening, but no results. Wednesday morning (first non-steroid day), I emailed the NP and asked if I could take MoM tablets. As soon as I hit send, I got some results. 😊 BUT that wasn't the end of it. She said yes, so on Thursday night when the problem continued I took 3 of them (bottle said for laxative use take 6-8 tablets- yikes! No way!) Well, Friday was the day from hell. Vomited my morning tea (with Miralax AND pills), spent most of day in the bathroom. Today just totally exhausted and shaky. Had to get my husband to drive me to grocery today. ☹️ Previous two infusions, I was tired (not like this) on Day 4 but back to my normal 2-mile walk the next day. Can't see that happening this time. Is this a result of the extended constipation issues, or a preview of things to come? Hate to think I'm going to lose a whole week every three. And now I'm totally paranoid about what's safe to eat.... Link to comment Share on other sites More sharing options...
LexieCat Posted October 24, 2020 Share Posted October 24, 2020 Aw, man, Susan--that sounds miserable. You know I empathize with the constipation. I go for my third round next week--Thurs. Monday I go for my blood work and CT scans. And Tues. I go for followup with the ophthalmologist. My eye STILL hurts, off/on. I will feel ok for a few hours and then start hurting and tearing up. Between that and my shoulder, I haven't been feeling great--I sure hope my treatment this round isn't worse than it's been. I took a Compazine 2 or 3 times over the past couple of weeks when I felt queasy, but it never got bad. Hopefully you start feeling better, soon. Link to comment Share on other sites More sharing options...
Sabacat Posted October 24, 2020 Author Share Posted October 24, 2020 Thanks! I don't envy you, either. Eyes are not easy to deal with under the best of circumstances. I hope this was a fluke, but I'm concerned about next time. I can't take Compazine, unfortunately - had a really bad reaction the first time. Link to comment Share on other sites More sharing options...
BridgetO Posted October 24, 2020 Share Posted October 24, 2020 It really does sound miserable for both of you, LexiCat and Susan. Susan, I hope you can get a handle on your digestive issues. If you had a day of vomiting and diarrhea, you probably got dehydrated which may have causes your fatigue anxid shakiness. I'm thinking about dehydration because I had a day of diarrhea and some vomiting recently for unknown reasons, not treatment related. I used Oral Rehydraton Salts, which we keep on hand for just such things. If your not familiar with ORS, it's like the adult version of pedialyte. It comes in an envelope that you mix with a quart of water. It gets you rehydrated faster than plain water. LexiCat, I hope your eye and shoulder get healed soon. Is your daughter able to drive you to your appointments? I hope so! Bridget O Link to comment Share on other sites More sharing options...
Sabacat Posted October 24, 2020 Author Share Posted October 24, 2020 Thanks for the info on ORS, Bridget! Filing it for future reference. In this case, no dehydration, though - my 'all day in bathroom' was more constipation, not diarrhea. Link to comment Share on other sites More sharing options...
GaryG Posted October 24, 2020 Share Posted October 24, 2020 Ladies I hope better days are ahead. Let's all pray for a good scan despite all the side effects. I am now on maintenance (Keytruda/Alimta/) but I felt tired and sleepy for the first time in a while and I was expecting smooth sailing without Carboplatin. Go figure. Link to comment Share on other sites More sharing options...
LouT Posted October 25, 2020 Share Posted October 25, 2020 I'm sorry to hear this happening to all of you. I pray you'll have better days in the future. Lou Link to comment Share on other sites More sharing options...
JamesB Posted October 25, 2020 Share Posted October 25, 2020 I hope you are all are feeling better! Link to comment Share on other sites More sharing options...
Babs Posted October 28, 2020 Share Posted October 28, 2020 Hi all, So I had my 4th treatment of triplet on Monday, and at the advice of my Doctor at the Mayo Clinic they did decrease the dose of the Taxol by 25% in hopes of lessening the side effects and getting me to 6 treatments. Yikes!! Past treatments I have had terrible leg pain, so we’ll see if this makes it better. My Doctor here is on board with the Mayo Clinic. I had a CT scan last week and the tumor is shrinking. The Mayor Doc used the word “significant”. He met with the tumor board and they discussed the possibility of some kind of precision Radiation. Either after my 6th treatment or waiting and while on maintenance if/when a recurrence, then. They said it’s complicated because of the location. Between the trachea and esophagus and they worry about the heart. Either way I will meet with a radiation oncologist to discuss the benefits vs risks. Has anyone had or plan on doing 6 treatments of the triplet? I’m a little surprised that he is recommending the 6, but it’s the Mayo Clinic so I feel like he might know what he’s talking about. Hope everyone is feeling better? I’ll let you know if the decreased dosage helped at all. Babs Link to comment Share on other sites More sharing options...
LexieCat Posted October 28, 2020 Share Posted October 28, 2020 Keep us posted, Babs. And YAY and WooHOO for "significant" shrinkage!!! Link to comment Share on other sites More sharing options...
Deb W Posted October 28, 2020 Share Posted October 28, 2020 Hi Babs, I have had 4 rounds of the triplet. It sort of makes sense that they extended it to 6 treatments because they lessened the dose. I hope you'll now have fewer side effects. The good news is that the tumor is shrinking! Best, Deb Link to comment Share on other sites More sharing options...
Babs Posted October 28, 2020 Share Posted October 28, 2020 On 10/24/2020 at 6:34 PM, BridgetO said: It really does sound miserable for both of you, LexiCat and Susan. Susan, I hope you can get a handle on your digestive issues. If you had a day of vomiting and diarrhea, you probably got dehydrated which may have causes your fatigue anxid shakiness. I'm thinking about dehydration because I had a day of diarrhea and some vomiting recently for unknown reasons, not treatment related. I used Oral Rehydraton Salts, which we keep on hand for just such things. If your not familiar with ORS, it's like the adult version of pedialyte. It comes in an envelope that you mix with a quart of water. It gets you rehydrated faster than plain water. LexiCat, I hope your eye and shoulder get healed soon. Is your daughter able to drive you to your appointments? I hope so! Bridget O Bridget, Where do you get the ORS? Sounds like something everybody should keep on hand since I’ve learned how important it is to stay hydrated. Thanks, Babs Link to comment Share on other sites More sharing options...
Babs Posted October 28, 2020 Share Posted October 28, 2020 Deb, Are you or did you stop at 4 and went on maintenance? If so, how were your side effects? Babs Link to comment Share on other sites More sharing options...
GaryG Posted October 28, 2020 Share Posted October 28, 2020 Hi Babs: Glad to know your cancer is shrinking. That's a good reward for side effects. Deb and I are on a different type of triplet. It consists of Carboplatin. Alitma and Keytruda. After for cycles of the triplet they discontinue the Carboplatin because, according to the oncologist, it looses it stops working. We are now on what they call maintenance consisting of Alitma and Keytruda. As for Radiation it all depends on how much cancer and how it is all concentrated in one area. After my second scan, I was told my cancer shrunk by better than 80% yet I still do not qualify for Radiation because they can't see some isolated areas where Radiation can target. I was also told that differentiating between cancer and scar tissue is not easy. I am hoping my cancer shrinks some more even though I am on maintenance therapy only. I saw the PA today and he wouldn't affirm or deny that will happen but he said that maintenance is meant to keep cancer form expanding. Being the optimistic guy that I am, I thought, what does a PA knows about cancer? 😁 I remain optimistic and my next scan will tell. Please keep posting. Meanwhile I wish you continued success without side effects. Link to comment Share on other sites More sharing options...
Lisa Haines Posted October 29, 2020 Share Posted October 29, 2020 Oh bummer! Sure hope once you're done with the Carbo you'll feel better. When I was in chemo I only had B12 every six weeks. Not sure what the protocol is in the triplet? I had constipation often, but don't do well with Miralax or many other laxative or stool softeners. They tend to quickly turn on me and then I'd have intense diarrhea. Never easy and never found a perfect solution. I've read about a tea, I think it's called Smooth move and people swear by it. I'm so happy that's behind me now, but I truly understand the discomfort with GI and bowel issues. Horrible... Link to comment Share on other sites More sharing options...
Deb W Posted October 29, 2020 Share Posted October 29, 2020 Hi Babs, I did stop the triplet after 4. It worked for me as I was told I've been in remission since August. Still, I am on Alitma & Keytruda and will have that until February. If everything looks good at that time he will drop the Alimta. The treatment plan right now is Keytruda for 2 years after being diagnosed which would mean April, 2022 if I can tolerate it. I have side effects which begin about day 4 after treatment - extreme fatigue and nausea. About day 8 or 9 I seem to come out of it. Since the beginning of treatment I've had constipation so I take a stool softener every day. It helps. Lately, I've been having skin rash on my face which burns at times - it's a new symptom for me . I will be starting my 9th (5th maintenance) treatment next Tuesday. I use a cortisone cream which works well. Link to comment Share on other sites More sharing options...
Babs Posted October 29, 2020 Share Posted October 29, 2020 Glad to hear you’re in remission! Hopefully the side effects are such that you can tolerate them. My plan is to go on to Keytruda for maintenance after 6 treatments and I guess stay on it as long as it’s working. I’m thinking there will be minimal side effects with just the Keytruda. Well good luck . Sounds like you’re responding well. Babs Link to comment Share on other sites More sharing options...
BridgetO Posted October 29, 2020 Share Posted October 29, 2020 Babs-- We always keep the Oral Rehdration Salts (ORS) on hand,. My wife does some international travel and traveler's diarrhea can be an issue. We used to get the packets at the pharmacy of our HMO, but they're now closed except for prescriptions. I need to get more and have found that its available online. But some caveats if you want to get some. It comes in little foil packets that make a quart or liter of solution. They should not cost over about $1.50 each if you buy 10. I saw some that are way too expenive. Second, be sure that you're getting the ORS that's approved by the World Health Organzation (WHO). It should say so on the packet. There are some that have other stuff like flavors or things that make them fizzy. I haven't figured out the best place to order from. There's a lot of stuff to wade through on line. Bridget O Link to comment Share on other sites More sharing options...
Babs Posted October 29, 2020 Share Posted October 29, 2020 Thanks! I’ll do a little shopping around. Link to comment Share on other sites More sharing options...
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