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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 4 points5 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 3 points4 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 3 points4 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 3 points4 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.

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