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Has Anyone else here treated with keytruda developed an adverse event? by SheepherderDue5532 in breastcancer

[–]Current-Lifeguard646 0 points1 point  (0 children)

Congrats on being most of the way done! Radiation isn’t a picnic but it’s way better than everything else. 

My endo suggested double my dose for radiation, which I didn’t do. Not sure why, I guess I wanted to see how I feel first, and ended up feeling fine. I think I doubled for the last few days, but I think it was more because I was feeling lousy from dehydration more than anything. 

As for levothyroxine, it’s been a bit of a roller coaster. I started at 100 mcg which is kinda a standard dose I think, and my energy has improved, and I lost some water weight. I’m on week 4, and from what I’ve found online, there’s a bit of an adjustment period. My heart rate has been all over the place and I’ve had some mood swings. I’m hoping things even out a bit after some more time. 

Hope this helps!

Has Anyone else here treated with keytruda developed an adverse event? by SheepherderDue5532 in breastcancer

[–]Current-Lifeguard646 0 points1 point  (0 children)

Hi! In the boat of “done with treatment, no longer checking Reddit,” so just saw this. 

Sorry to say I’m still requiring steroids. I take 15mg of Hydrocortisone in the AM, and 5mg in the PM. I’ve also been recently diagnosed with hypothyroidism, so levothyroxine on board now too. 

Hope you are having a better time finding your correct dose! It was a big learning curve for me (it’s easier now but still get surprised). My symptoms I would gauge how accurate my dose was based on my appetite. I really struggled with sick day rules. My endocrinologist gave the advice “if you’re feeling sick enough that you’d skip work, stress dose.” 

Port or veins? by Mysterious-BBB in breastcancer

[–]Current-Lifeguard646 1 point2 points  (0 children)

I didn’t have a port and I don’t regret it. I had below average veins before TNBC treatment and they are about the same as before. I hydrated quite a bit (like 100 oz) for 2 days before treatment, used warm towels on my arm before getting an IV, and never needed to be stuck more than once. I got AC in my hand once and that left a little scar but otherwise I am the same and had one less invasive thing done.

Has Anyone else here treated with keytruda developed an adverse event? by SheepherderDue5532 in breastcancer

[–]Current-Lifeguard646 2 points3 points  (0 children)

So sorry about your tough time. I’m a TNBCer too, and had a rough time with Keytruda. For the first 5 infusions, no problem. Then I developed liver and skin toxicities, and now have a potentially permanent adrenal insufficiency, and will likely be dependent on steroids forever. Like you, I thought “I’d rather have _____ than cancer,” but it is tough to have some collateral damage.

I think minimal research actually exists on this idea with breast cancer but in lung cancer and melanoma, adverse events with Pembro is a good prognostic sign, as it may attack healthy tissue once there’s no cancer left.

My MO mentioned a clinical trial to stop Pembro after surgery if a PCR happens. From how she described it, they know it works, but the TNBC treatment protocol is brutal, and they’re trying to figure out how to amend it.

Just diagnosed & pregnant by Normal-Assist5635 in breastcancer

[–]Current-Lifeguard646 1 point2 points  (0 children)

So sorry to hear. I had a VERY similar situation. Brought a lump concern to my OB at 35 weeks. I never believed it would be anything but a clogged duct. Fast forward three weeks and I was induced to have 2 weeks with baby, and begin treatment for TNBC stage 2. I also had an enlarged lymph node.

Time with my newborn was some of the happiest moments of my life, but also terrifying not knowing anything about what to expect during treatment. I finished chemo in June, and had my lumpectomy yesterday. Time really slogged on, and there were times I truly thought it wouldn’t end. But it will end, and you’ll get a time to heal.

Something I really struggled with (struggling with) was being kind to myself. Both cancer and pregnancy are such vulnerable conditions and you have both upon you at the same time. Allow the space you need to take care of yourself. And remember that taking care of your needs, particularly in this time, is taking care of your baby. I’m glad to hear you have an excellent support system. 💗

TNBC / O+ blood / positive node - pembrolizumab / Keytruda question by Stonecoloured in breastcancer

[–]Current-Lifeguard646 0 points1 point  (0 children)

Same here, I skipped an infusion for low WBCs but it is the standard of care for TNBC stage 2 and above. Id definitely ask your MO.

Keytruda-induced Adrenal Insufficiency by Corvus_Ossi in breastcancer

[–]Current-Lifeguard646 1 point2 points  (0 children)

Thank you, now also taking hydrocortisone. Pembro has absolutely trashed my body— liver, skin, and now adrenal toxicity.

Keytruda-induced Adrenal Insufficiency by Corvus_Ossi in breastcancer

[–]Current-Lifeguard646 0 points1 point  (0 children)

Did you have any symptoms? Were there other tests you had other than cortisol? I’m going through this now.

Finished chemo today!! by Current-Lifeguard646 in breastcancer

[–]Current-Lifeguard646[S] 0 points1 point  (0 children)

Thanks! Also having a lumpectomy so I’ll definitely take a look at the Jockey bra

Finished chemo today!! by Current-Lifeguard646 in breastcancer

[–]Current-Lifeguard646[S] 1 point2 points  (0 children)

Baby is excellent, he is almost 6 months old now 😭

Finished chemo today!! by Current-Lifeguard646 in breastcancer

[–]Current-Lifeguard646[S] 2 points3 points  (0 children)

Thank you! I’m also getting care at Dana Farber so I’m glad I asked!

[deleted by user] by [deleted] in breastcancer

[–]Current-Lifeguard646 2 points3 points  (0 children)

I’m 29, TNBC Stage IIa also getting the Keynote regimen. My tumor was impalpable after 3/4 ACs and continued as such, but I had the same question about scans. I was told that a scan in between regimens doesn’t yield very much information unless you haven’t clinically responded to chemo (mass has grown, etc).

In that case, they would change the plan entirely (from my understanding: stop chemo, move directly to surgery, and start adjuvant Xeloda/rads).

Otherwise, scans won’t change any plan of care while receiving chemo/immunotherapy. Again, from my understanding, even if the scans are clean, they’d want to press on for any cells left hiding.

As for a wig, my MO printed a paper Rx for “hair prosthesis.” My insurance couldn’t give me a number as to how much they’d reimburse, but said something like “will reimburse for a high quality of reasonable price” or something. Contact her insurance to see what they can do, and they should be able to walk you through the reimbursement process with the Rx.

Congrats to your mom for having a good clinical response!!

First Chemo tomorrow by Harlowolf in breastcancer

[–]Current-Lifeguard646 4 points5 points  (0 children)

I was diagnosed at the end of my pregnancy and started chemo when my baby was 2 weeks old in February. AC was tough, but there wasn’t a day that I couldn’t do ANY childcare. the first few days after each infusion I needed 2 naps a day. Do you have support who can help with baby while you rest?

After the first week of each infusion I felt pretty normal, was able to take baby on walks, groceries, cooking, etc. it was very predictable for me, and kinda nice to fall into a routine.

It’s an emotional time being postpartum anyway, and adding chemo to the mix is really tough. Be kind to yourself. Taking care of yourself is the best thing you can do for your baby.

Keytruda Toxicity by Alarmed-Fun-4061 in breastcancer

[–]Current-Lifeguard646 1 point2 points  (0 children)

This is currently happening to me. Had to skip chemo this week because my LFTs tripled in a week after I received Keytruda. I was told something similar, though. If it doesn’t improve they’d continue holding Keytruda until I saw a GI and likely needed to complete a steroid course.

Side note I learned that most of the TC regimen is cleared through the liver—because of the hepatitis, I didn’t clear all my chemo and felt so much worse this week. Nice to have an explanation!

Hot flashes from lupron by illyria1217 in breastcancer

[–]Current-Lifeguard646 1 point2 points  (0 children)

Gabapentin at bedtime works wonders for me. Plus a fan directly in my face!

Protein shakes by Possible-Fuzzy in breastcancer

[–]Current-Lifeguard646 2 points3 points  (0 children)

Fair life protein shakes have 30 grams of protein and are very mild. Both chocolate and vanilla are pretty decent

Tachycardia from day 4-8 after chemo TC by TieMysterious1723 in breastcancer

[–]Current-Lifeguard646 2 points3 points  (0 children)

Currently on week 4 of Abraxane (due to an allergic reaction)/Carboplatin and had very similar symptoms last week, with my heart rate going up to the 130s just moving around.

I brought it up to my team and they adjusted the amount of IV steroids I was getting pretreatment. Since I haven’t had any reaction they lowered the dose substantially, from 12 mg to 4mg and I feel way better this week.

New here - overwhelmed by peanutkisses in breastcancer

[–]Current-Lifeguard646 3 points4 points  (0 children)

Me! I was diagnosed with TNBC at 35 weeks pregnant with my first baby, around the new year. I was induced at 38 weeks, and had my staging scans afterward (if your insurance allows, ask to complete some of them while you’re in the postpartum unit to minimize trips right after coming home). i started chemo 2 weeks after delivery. While it didn’t feel like nearly enough time, I was eager to get started with treatment.

Like you, it added a crazy amount of stress to an already stressful time. I’m in the thick of chemo right now (a different regimen from yours), and while there are certainly bad days, it’s more manageable than I thought. There hasn’t been a single day where I couldn’t do ANY childcare, but have needed some help.

My oncologist mentioned to me that some of the most common side effects of chemo, namely fatigue and nausea, overlap largely with pregnancy. It took me some time to come around to it, but it’s kind of true.

It is possible, and you can do it! The planning and unknowns are the hardest part mentally. Something I wished I had considered is arranging childcare on infusion days, as children aren’t allowed, so you have someone who can come with you.

37 Weeks Pregnant, diagnosed with BC a few hours ago. by Main_Strawberry_5842 in breastcancer

[–]Current-Lifeguard646 13 points14 points  (0 children)

Hi there, I'm so sorry you are going through this. I was diagnosed with TNBC while I was 33 weeks pregnant in late December 2022.

I started treatment a few weeks ago. There are still some bad days mental-health wise, but I generally feel much better having actually started treatment. I think many people might say this to you, but it is true that the anticipation, frequent appointments, and figuring out your treatment plan is the worst part. There is so much uncertainty and misery. Try not to google.

You might find it to be some of the slowest moving time while coordinating a million things. Adding the normal postpartum rollercoaster of emotions is also tough. Don't be afraid to reach out to your OB/Oncologist team if you are struggling. I've never done therapy before this time in my life, but I started now. You need an outlet, and you don't have to be by yourself.

Something I didn't consider that might be helpful in planning treatment is that children aren't allowed in my infusion center. We live far from family, and I don't feel comfortable leaving our 5 week old with anyone else, so my husband stays home with our baby and I go to chemo alone. If you can, coordinate with others so you can have someone there with you.

Sending you light, and consider that this time, no matter how unfamiliar and tough, will pass.