Triplet (Carboplatin/Alimta/Keytruda) side effects

[LexieCat]

When you're taking all three at once (not to mention a couple of anti-nausea meds and a steroid), how do you know which side effects are attributable to which drug? I've read the literature about the potential side effects of all three, and it seems like several of the same side effects can be attributed to any of the drugs.

So how do you (or the doctor) know which one is the culprit? I guess it really matters only if they're bad enough that something needs to be changed, but just wondering.

[GaryG]

Since they share many of the same side effects, I don't think there is a way to find out for sure unless you eliminate them one  by one.   Also the side effects vary from one person to the other. My oncologist told me they  limit Carboplatin to 4 infusions  because it is the one  hardest to take. Some posters taking Keytruda alone complained about side  effects.

I am happy to report that I felt less and less side effects after the second and third infusion, I assume and hope this is the same for all patients.  

[Rower Michelle]

I only had one dose of the triplet, later that night my lips and mouth area turned purple.   They didn’t worry about what the culprit was just said if I round #2 they would add IV Benadryl to the mix.   
The steroids did a good job, never had any nausea but sleep was elusive, did a lot of cleaning.  
The only side effect which was considered a slam dunk was the night sweats from Keytruda.  Lots of T-shirts on the end table.  
 

Record and report everything, no need to suffer through treatment.  

[LexieCat]

I know I can't go by how the first day or so feels, but right now I feel terrific. Presumably the steroid (dexamethasone--which they gave me an extra dose of, in addition to what was prescribed for home, right before infusion) has, indeed, given me a boost of energy and--probably due to reducing inflammation--greatly reduced my shoulder pain. I was able to sleep well all night except for waking once and being able to actually sleep ON my side with the shoulder pain. Best sleep I've had since the accident on Labor Day.

No queasiness at all, so far. My daughter, who works for Davita Kidney Health, will nag me about water and other fluids--she knows insufficient hydration during chemo can cause kidney damage requiring dialysis. 

And possibly it's overkill, but I've already had trouble at times remembering whether i've taken my regular daily pills (only one prescribed but several supplements), and now I have a few more, one of which has to be taken twice a day, so I invested in one of those automated pill dispenser thingies you can control with an app on your phone. Once you set it up, it reminds you of the time and dispenses whatever scheduled dose. It's a bit pricy and the machine a bit noisy (but only while actually dispensing the pills). I like tech that reduces the need to keep things straight or give someone else directions about.

I'm not getting my hopes up to dodge side effects forever, but I'll take the good days, gratefully. 

[Robert A.]

When my wife had the triplet it took 2 days before she started feeling the effects, the effects lasted 2-3 days then she was back to normal. Her symptoms were laziness and aches. She slept a lot and her taste was affected. She used to love sweets but lost all desire for it while on the medication. Nothing tasted good expect cereal and bananas. I hope your effects are minimal.

[Rower Michelle]

I forgot about the Carbo taste buds.  In the book, Cancer Fighting Kitchen by Rebecca Katz, she developed a guide on how to counter those side effects. 
 

The recipes are surprisingly tasty too (even my 1st Gen Brit hubby will eat some of them)

The chia pudding recipe helps with constipation too.   

[LexieCat]

Thanks, Michelle, just downloaded the book on Kindle.

I don't normally eat breakfast, but having a cup of greek yogurt today.

I also found I'd gained 3 pounds overnight--probably due to the infusion/liquids. I've been trying for a year to lose the last 10 pounds of re-gained weight after my first (highly intentional) weight loss. 

[Sheryl E]

Lexiecat,

I’m so happy to hear you are feeling good!! I hope you breeze through this!! Sending you good vibes😊

[Rower Michelle]

Oh and that burst of energy, definitely the steroids!  My wood floors practically sparkled when I was on them, then two or maybe three days later the big crash came, I slept for at least 14 hours.  
 

 

[BridgetO]

Enjoy the steroid boost!  And be prepared for the crash--maybe you won't have it, but don't be surprised if you do. Be ready with your anti-nausea meds at the first sign of nausea. And pay attention to your daughter about the fluids. Good she's in the medical field.  So  probably pay attention to her about everything (hair style is optional). When my mom broke her hip,  I went to spend a couple of months with her in California, since she lived alone and had no one there to help her. I turned into Nurse Ratched. She hated it at first  and gave me a had time but ultimately  she appreciated it, because she was self-sufficient when I left.

Maybe her hair style advice isn't optional-- doing something adventurous with your hair before it falls out might be entertaining and a distraction from chemo. 

Bridget O

[BridgetO]

P.S. If you get a new hairdo, please post a photo.

[LexieCat]

Don't worry, I will. I don't wanna color it till I'm sure I'm shaving it all off--I've spent too much time growing out the gray, hoping I could style it. I'm inclined toward Jamie Lee Curtis's hair--I've always had people tell me I looked a bit like her (from the neck up, anyway, lol) and she's got a nice spiky silver pixie.

 

[Sabacat]

I'm told that our triplet is  not likely to cause much, if any, hair loss.  Not sure if I believe that, but hoping.  I'm super envious of folks who look good in short hair - ESPECIALLY gray short hair.  I have two friends who look fabulous in gray pixies while I'm stuck dealing with the costs of coloring and the effects of southern humidity on my natural frizz (which was perfectly straight and smooth in my youth ☹️).  Maybe a wig is the easy way out.....

[Babs]

Hi all,

I didn’t want to lose mine!  My hair is thick and full and partially wavy, but oh has so much body in it!  I don’t  recall who said it but about 10 days post treatment my hair starting hurting!  Yes, your hair can hurt!  A couple days later it started coming out.  A little at first until last Saturday I begged my daughter to shave it!  It was such a mess!  Hair everywhere!  I was prepared though.  I had my wig all picked out.  It is very easy to just shower and plop that sucker on and you’re done.  I do however miss my own tresses.  It was very traumatic!  Oh well, it will be interesting to see how it comes back.  Hopefully it comes back.  Just another battle scar I guess.....😬

Babs

[LexieCat]

Well, last night I felt the slightest bit of "quease" so I took a Zofran. Just took another this morning--from what I hear you want to stay ahead of the nausea. I'm just not sure whether I should keep taking it on schedule or whether it's something I should take ONLY if I start to feel sick. Guess that's a question for the pharmacist, maybe--she went over things very thoroughly but there was an awful lot of info to absorb.

I think I'm also a bit constipated and will try some metamucil I have on hand--for years I've had mild IBS symptoms so occasional diarrhea and constipation--for which I now take a Probiotic that helps. 

I've also gained almost 5 pounds in two days. My appetite is fine so far and no taste changes yet. I need to put the brakes on the weight gains so I may have to strategize my snacking better. 

[Sabacat]

That much gain that fast almost has to be fluid retention.  Steroids can cause that. Do you pay attention to your sodium intake?

[Rower Michelle]

Whoa!!! A five pound weight gain in less than an week is an AUTOMATIC call to the doctor.  Need to rule out pulmonary edema or pneumonitis.   Please don’t wait...

On the issue of weight (targeted therapy is a beast), my integrative oncologist says lung cancer patients need a 15 pound insurance policy (if you have a normal BMI).  We can lose up to ten pounds a week sometimes.  I just squeeze my eyes shut now when I get weighed.  
 

It’s a really difficult transition in Stage IV to think about food as medicine and nutrition.
 

I got this one from the Cancer Clinic:

 https://www.abebooks.com/Food-Medicine-Everyday-Reclaim-Health-Whole/30700609400/bd?cm_mmc=ggl-_-US_Shopp_Trade-_-used-_-naa&gclid=CjwKCAjwkoz7BRBPEiwAeKw3qxAArK2FsCh58R4dbpxttBeRa4PaP0H9MFkqjLQHyYFlARyPzxRj5xoCu2MQAvD_BwE
 

Happy snacking.....

[Lin wilki]

Word to the wise— don’t wait till the nausea hits- take the Zofran on schedule. I tried once taking less and once it hit- zofran did not help!  NOTE: It will make you very constipated so that is always something to stay on top of. I now take Miralax every day The weight gain does seem to be something to call the doc about

Good luck!  Remember to keep a diary of side effects so you can know what to expect with future infusions

[Tom Galli]

Lexie,

Agree with Lin on Nausea and timing of Zofran. Record the time of onset of nausea in hours after infusion. In my experience, this symptom showed up the same number of hours after infusion so I took it about an hour before symptom onset and no nausea.

I didn't have the constipation symptoms but Michelle's suggestion for weight gain for pulmonary edema is worth a call to the doctor. Five pounds in less than a week is unusual.

Any joint pain or numbness in hands or feet?

Stay the course.

Tom

[LexieCat]

My mistake--four pounds since infusion. I'm not particularly alarmed--I often fluctuate 2 pounds or more day to day, depending how I eat. But to be on safe side just dropped the PA a note. My ankles are a bit swollen today, which isn't normal for me, but I do get that from time to time. It's not excessive. 

3 hours ago, Lin wilki said:

Good luck!  Remember to keep a diary of side effects so you can know what to expect with future infusions

Yup, started that the first day. Keeping a running diary.

[LexieCat]

Just got a message back from the oncologist (not the PA). He said not to worry, it's just normal "fluid shift" from chemo and that home scales aren't accurate enough to make determinations of granular shifts in weight. I thanked him and told him I'd let him know if it turned into any kind of drama.

I seriously doubt anything pulmonary is going on--no SoB or coughing at all. 

[LexieCat]

Just got add'l message from oncologist to clarify--he said some chemo regimens do cause significant/potentially serious fluid retention that they monitor closely, but not the one I'm on, thankfully.

 

[Rower Michelle]

It’s great the doc reported in to you directly! Awesome!  You might want to visit with the pharmacist because Pneumonitis is higher with Keytruda and Lung Cancer-

https://www.keytrudahcp.com/managing-adverse-reactions/
 

The reason I hit the e-freak out button this morning is that I had a five pound weight gain with no other symptoms, turned out to be pulmonary edema, very glad my oncologist followed a hunch....

Carry on! 

 

[GaryG]

Triplet duration; This is a  correction to my post in response to Lexicat (I think). I had the triplet yesterday and registered the correct time:

1/2 hour for anti nausea IV medication.

1/2 hour for Keytruda

10 mn for Alitma

1  hour for Carboplatin.

In addition it takes 1/2 hour for readiness and time for a manager to sign on on every single drug before infusion.

All and all 3 hours is a good guess from start to finish.

GaryG

[TJM]

Five pounds is nothing.  I put on 30 Lbs in a week. My feet and ankles swelled up, I started to slip backwards fitness wise, yet my Onc not concerned.  Said go thru my primary.

I went to urgent care and he told me to get compression socks (look like stockings..and damn I look good)

Scheduled a phone call with my primary and gave her both barrels. Finally got a response.  More later, but I almost feel like I have to be my own doctor. That's fine by me for now but no more Mr nice guy.

Peace

Tom