u/ImaginaryVersion1734

Hi Everyone. I have been feeling really disconnected from my partner this week. Ever since starting this 4th cycle, my libido and my patience is at an all time low. Even with my friends, it’s been hard to connect with ppl and idk I just find myself getting annoyed at every little inconvenience. Today I had a tough time eating and it just set my day off to a bad start.

I just feel like a crappy gf rn. I find myself forcing intimacy at times, and it just makes me feel super disconnected. We facetimed yesterday and I just couldn’t care less for how her day went. I felt terrible. I used to make fun of her (in a loving way) for her repetitive phrases: “basically”, “actually”, “essentially” . But I was genuinely so annoyed yesterday, in my head I was counting how much she said those phrases and it was really driving me crazy!

I love her and all but I just don’t see her the way I did when we first met. Esp with the distance, just talking hasn’t been making me feel connected to her. We have so many great memories together and I don’t want to hurt her or distract her from school by calling it quits. I don’t want to break up but I definitely need some time to figure out my feelings. Do you think distance helps when you feel overwhelmed in your relationships?

I made plans to see her this week but I rescheduled because I’m recovering from a port replacement rn. I’m just confused on if I need space or to book a flight to rekindle what i feel? For now I think I’ll ask for space. What do you guys think?

Hi Everyone! Noticed I never got my period after the first of the month, so I think it’s safe to say it isn’t coming back anytime soon. Prior to my 4th cycle of chemo, I was on time and had some pretty good flow (surprisingly). Now it’s kinda starting to hit me like a bus.

I don’t have heat flashes or anything, but I noticed the lack of sex drive + dryness develop over these past 2 weeks. For those with mtnbc, are there any solutions out there? I’ll talk with my onc next time I see her, but other than that I’m a bit concerned. I’m supposed to visit my gf in 6 days, and I already kinda let her know how I’m not feeling it sexually rn, but it definitely makes me sad admitting that.

Hi Everyone! Just had my first ever blood transfusion today and everything went very smoothly. From Gemzar infusions my wbc, rbc, and platelet counts dipped significantly. Reason for my transfusion was my low hemoglobin. Although my platelets are at 25 rn they said they only give platelets for <10. So instead I’ll be getting nplate injections and they’re delaying my chemo by a week + reducing gemzar by 10%

Overall I think I feel better. I had my period right before starting Gemzar so I think that’s why my hemoglobin dipped to 7.7 and rbc to 2.9. Anyways, I hope everyone is having a great day! Now I’m off to watch the Spiderman movie :)

Hi Everyone! I’m turning 21 on August 2nd. I have my next Gemzar/Carboplatin infusion on July 30th so I’m wondering what I should plan for my birthday.

For my first GemCarbo infusion I was out for like 2 days and pretty fatigued for Days 3-4, so what low-maintenance activities would you suggest? I know I want Carrot Cake for my birthday but aside from that I’m not really sure what to plan that day. I’m not planning on drinking alcohol, but overall I would like to do something fun to celebrate.

I’m debating on asking for extra time off of chemo for my birthday. Have you guys ever delayed treatment for a couple days to celebrate your birthday?

Hi Everyone! I just had my first Gemzar infusion this morning, and I’m happy to report I had no allergic reaction!! I had pretty bad anxiety leading up to today, but all turned out well!

With this infusion they gave me no pre-meds (no steroids or Benadryl) , aside from the anti-nausea meds. Since I wasn’t given steroids I knocked out the moment I got home. I feel like I’m feeling chemo-fatigue for the first time.

This infusion was very quick compared to my last few. I got in at 8:40ish and got out by 11:30am. Aside from chemo-fatigue, I don’t feel any other symptoms yet. Anyways, just wanted to share some good news!! No allergic reaction today!

Hi Everyone! A bit of a sad post today but I find myself missing my old summer job rn. It’s funny because I was a lil miserable there before I quit last summer, but I miss the people and the times when I could just get myself a “free” ICEE and dip n dots. (for context I used to work at this lil waterpark owned by the city). I miss driving to work, and how routine it felt. That used to be my normal.

My new normal is going to appointments and hanging back at home. I went to the beach today to break the monotony and it was really nice. Now I’m just back to being in my head again.

It’s weird sometimes I think about my last job too. I loved talking to the patrons and eating raw fish. It was a short lived job, and I didn’t really work there long enough to have friends, but I still miss how that felt normal. Since I was going through the diagnostic process at the time, my mind was a lil distracted so I wasn’t the bestttt at my job. I remember how my boss used to look at me like I was an airhead 😭 (mind you i just started working there a week after my pcp referred for me to get an ultrasound for my lump). Luckily since I was good at talking to ppl she saw some potential in me, but when it came to making the food it was a lil difficult for me to work in a fast-pace environment. Like even taking orders was a lil rough. I’d have a terrible habit of forgetting to ask if people had a gluten allergy if they were selective about the topics… (like why can’t ppl just let you know?!). So that’d lead to ppl ordering raw fish with gluten in it, while avoiding the gluten free toppings…Anyways, I hope once I go back to school I come back better mentally. It’s still uncertain if I’m coming back to school this Fall, but if I can I’d like to go back to my normal asap. Even if that means going back to the mess ups and the boss thinking I’m an airhead.

Anyone else have dreams of going back to their normal? even if it wasn’t all that perfect, it’s still your life yk.

Hi Everyone! I haven’t made an update in a minute. Last time I shared how I was starting Abraxane after having an infusion reaction to Paclitaxel. Ended up having hives at the end of my Abraxane infusion…. so turns out I have a true Taxol allergy. How insane is that.

My oncologist is giving me a 2 week break from chemo. She reassured me how with Gemzar there’s no risk for cross-reactivity, since it’s a different drug family. I’m happy about the break bc my gf is visiting me these next two weeks! She’s out of school, so we’re spending time together, and I actually have the energy to do things with her. We went to the beach yesterday, and today we’ll be going out for brunch with my mom!

Good news: Although my body hates Taxol, my tumor shrank so much. My breast tumor shrank to half its size, lymph nodes size decreased significantly, and some lung mets are undetectable. The one that was 5mm is undetectable!! Although there is one on the right side that is unchanged at 4mm. on the last CT (w/ contrast) scan I had when I was in the hospital.

Oh yeah forgot to mention. Went into anaphylaxis less than 12 hours after my abraxane infusion so i was in hospital for a couple days. This is the reason for the scan. Came in with SOB so they checked my lungs out and throat, and everything is now good!

Hi Everyone! Now that schools out for the summer (finished up my online courses last week), I’m kinda starting to get pretty bored at home. What do you do with your time?

Before I had cancer, I used to be avid moviegoer. I had Regal Unlimited and always made plans with friends to watch all the indie and special movies for the month. I technically still have my subscription but I haven’t been able to go as often as I did because my cinephile friends are like 416 mi away now and it kinda isn’t the same going alone. Also I’m in active treatment so I’m avoiding big crowds.

I’ve gone through my puzzling and playing Minecraft phase, but I guess I’m looking for something more fulfilling. Like something that makes life fun again. I think I’m starting to go through a depression so any ideas would be great!

Also if you guys have any movie reqs you can drop them as well!

Hi Everyone! I’ve been having a bit of a rough time getting through my first line of treatment. On like Day 7-15 of my first cycle of chemo/immunotherapy I had a pretty bad allergic reaction to Keytruda. Luckily my rash is stabilized and gone, but I ended up having another allergic reaction (but this time) to my paclitaxel during what was supposed to be my second round of chemo. My oncologist made the decision to stop my second cycle, and switch me to Abraxane so I should be resuming my second cycle by Tuesday (at the latest). Just waiting for insurance to approve it first.

Anyone else out there switch from paclitaxel to abraxane? I’ve been looking up a lil more on the drug, but there’s no way to really know until I try. Just hoping for some positive feedback.

It’s a lil nerve wracking going in. I grew up never having any allergies, now all of sudden I’m allergic to paclitaxel and keytruda. I’m trying my best to go in with a positive attitude for this chemo because I hear pretty good things.

I think I’m also spooked because I had two allergic reactions back to back. My oncology team caught my hives quickly which was nice so the episode was like less than 10 mins long. So at least it wasn’t as traumatic as the rash I had during first cycle. Just desperately hoping for a good response this time thats all.

Hi Everyone, I hate to share bad news here , but I’m pretty bummed out about this new hospital visit. On May 28th, I noticed I started to get a rash after my 2mi walk. I figured it was sweat hives so my grandma gave me some benadryl cream and clartin. At 3am, I wake up in the middle of night , and I see that the rash has spread to my neck all the way to my kneecaps. So naturally I go to the ER . When all the tests came back, my WBC was a 34.5 K/uL. Since I didn’t have a fever at the time, they discharged me, and assumed WBC were high due to the Neulasta boosters I got. Nonetheless, they gave me Benadryl, pepcid, and some steroids to help with the rash

When I go back home, I start to become extremely fatigued. my fever starts to kick in at 8pm. That night was absolute hell. I put on every cold sheet I had in my house with the fans on and everything, and I felt like I was on fire. I went through a total of 4 Benadryl topical creams within 2 hours and nothing was saving me. Also i took Benadryl pills like clockwork. Somehow I found it in me to sleep that night.

When I wake up my face is puffy, red, and burning. I couldn’t even recognize myself in the mirror. I was so out of it. My grandma ends up calling my oncologist, and she urges us to go to ER again. By this point, I’m covered head to toe in a rash. My temp when I arrived was 103.5F.

I’m admitted first into ER, and I’m quickly transported to the ICU. All I can remember is how out of it I was. my vision was like I was staring into an LED light. Luckily I’ve regained my vision back, but I just remembered feeling terrified. For the first time in my life, I genuinely didn’t have a positive outlook on life. I’ve never had an allergic reaction to meds before. My onc believes it happened due to the Keytruda, and she believes I have SJS. I’m really disheartened by this because the internet is telling me immunotherapy is off limits now, not just Keytruda.

I just feel crushed. I had plans to continue school and hopefully get married and have a family one day, but idk if it’s even possible anymore. I was doing good coping for a while, but this all unfair. The Keytruda was working so well, then all of a sudden it starts attacking my skin and mucous membranes. It should be 3-5 more days in the hospital for me to recover. I just wish I had a normal adulthood sometimes. I liked my life when I was studying math, and doing fun things in college. I was so close to graduating, then all of a sudden I get this cancer diagnosis.

I’m the youngest in my family to get cancer, and I just feel betrayed. Like everyone on my maternal side gets cancer in their 50s-60s. My grandma had ovarian stage 3 at 52, and my great great grandma had breast cancer at 60. It just makes no sense to me how I’m here. Sometimes I think my chronic stress and the issues I dealt with in the past “gave me cancer”. Like idk I ate so healthy and worked out everyday, there’s no reason I should have this. Also , I never abused any substances.

I’m more upset that I have SJS than mTNBC atm, but I guess all these feelings are brought up now than here in the hospital. I just hope PARP inhibitors can give me at least some years of quality life.

If anyone has any positive outlooks, feel free to share. this is just more of a rant. I guess overall I’m glad to see another day. Having SJS was the scariest thing I’ve ever experienced before.

Hi Everyone! Just wanted to check in. I received my first chemo infusion yesterday. It took a total of 9 hours!! How insane, but it was a nice day! I had an amazing oncology nurse and I watched a lot of good tv (Friends, Aloha Renovations, Property Brothers)

A couple of symptoms I’ve noticed within the first 24 hours are dry hands, dry mouth, and I’ve unfortunately lost my ability to taste sweet foods. This morning I ate a banana , apple sauce, and my premier vanilla protein shake, and I was shocked to notice how fast my taste changed. It was like bitter. Even when I drink cranberry juice it’s not as sweet to me anymore. Another new symptom I noticed was a redness in my face after I went for a walk. I walked at like 7:15pm ish so it wasn’t peak sunlight or anything, but my cheeks are red after walking only 2 miles. Overall, I avoided sun exposure today so I’m shocked I still have a bit of redness now. It’s not a rash, but it’s mildly irritated.

I receive my first neulasta onpro injection at 11:25pm so I think tomorrow I’ll start to experience some bone sensitivity.

What symptoms did you guys experience within the first 24 hours of chemo?

For reference I’m on Carboplatin/Paclitaxol/ Keytruda/ Neulasta onpro.

Recap: On Monday I woke up from my nap to a fever. When I checked my port site I realized there was yellow discharge coming out so I promptly went to ER to manage my infection.

After 3 days in the hospital, the blood culture came back negative for bacteria! CT came back good as well. It only showed inflammation around the port site. Also the echo came back good. Just some tachycardia. This is good because this means I get to keep my port. So I was discharged Wednesday night!

Only downside is I’ll be delaying treatment for a week. They want my port to fully heal before I start treatment , so I’m on antibiotics till then. Overall, I consider this a win.

Hi everyone, I’m at ER currently. Realized after nap today my port was infected (there’s puss) and I started developing a fever. Once I got to ER they said my temp is 100.1 F. I’m a bit scared and bummed out.

Initially I had plans to shave my head today and eat my last sushi before chemo. Wanted to shave my head so I can lose my hair on my own terms. My mom is supposed to make it into a wig for me. I’m supposed to start chemo tomorrow but now I’m not sure that’s still happening.

This is my first set back in treatment. I had advocated to have it looked at three times. There was no puss at the time but knew something was wrong. My neck took like 5 days to heal, but my port was still “healing”. Got the procedure done April 28th.

Does anyone have any stories similar to this? unfortunately i can’t give anymore answers than this because my ER is at max capacity. I’ve been here for 3+ hours and I’m still waiting for bed :(

I know I did everything I could to catch a complication as soon as possible. It’s just disheartening to know I may be delayed treatment or worse, may have port removed and replaced.

Hi Everyone! Just got diagnosed with de novo stage 4 TNBC on May 7th. I just had my lung biopsy May 4th to help determine my staging. On PET scan the lung nodules were too tiny to determine if cancerous or not so I had to unfortunately undergo a noninvasive procedure. Good thing is that I’m finally back to normal, and going on walks. I’m not really in any pain rn thanks to the norcos and motrin🙏.

I start chemotherapy May 12th where I’ll do doing
Keytruda/carboplatin/paclitaxel + Neulasta for 6 cycles. Then I’ll switch to PARP inhibitors and do immunotherapy for maintenance after chemo.

Just want to share my story, and see how other survivors with de novo TNBC are doing. So far I’ve been hearing some good stories about some people going onto live 5,10, and even 15+ years with this condition. I think I just need some motivation before I start chemo.

Currently in the process of getting a second opinion , and hopefully I can get my hands on a clinical trial at the City of Hope . I have high hopes as of right now, but all is still uncertain.

Hi Everyone! Just wanted to share some good news. I had my egg preservation procedure today and in total my fertility specialist collected 33 eggs. Of those 33, 22 are optimal length and are now frozen! I’m so happy. Definitely makes my odds a bit better since I want at least 2 kids (i want 3, but we’ll see what happens)

Just a big win in dark times. I have my lung biopsy on Monday to determine staging, so I hope some more good news is on the way🙏