u/Neurotic-Me

My anxiety is through the roof. Honestly. Tell me how your symptoms progressed, or didn't!

Currently week 5 of taxol + carboplatin, but I had a 5 week delay in between infusions 2 and 3.

My symptoms are probably mild but with so much medical PTSD and anxiety, I feel like it's all going to kill me, even my sweaty palms. 7 more weeks and then AC is horrifying.

My anxiety is through the roof. Honestly. Tell me how your symptoms progressed, or didn't!

Currently week 5 of taxol + carboplatin, but I had a 5 week delay in between infusions 2 and 3.

My symptoms are probably mild but with so much medical PTSD and anxiety, I feel like it's all going to kill me, even my sweaty palms. 7 more weeks and then AC is horrifying.

I've had a whirlwind of complications during the start of my TNBC (stage 2, grade 2) keynote treatment here. Honestly, the PTSD of symptoms that I think will kill me are staggering. But also... somehow... now that I'm back "on track" (knock on wood) and have done 4/12 taxol/carbo, I'm just ridiculously, laughably PISSED every day when I feel my breast or that one f^cking lymph node and feel the tumors. Like somehow by now these things should have melted away and are mocking me on top of everything else. I know I've seen comments from people who say their surgeon found only dead cells after chemo, etc. but I really wish there was some way to tell this is working because I'm struggling and need some magic.

I'm currently going through chemotherapy and obviously there's so many things that can go wrong. I'm trying to keep up some fitness since it's supposed to make it easier but also track my heart rate, o2, etc continuously through the day and night. I know they aren't medical devices but seems like some are accurate enough to keep me aware if something is looking funny?

In another complication, I have tiny wrists. About 5 in circumference?

Any suggestions appreciated! I was gifted a FITVII slim but had been looking at Garmin Venu 3 or Withings Scanwatch 2.

I am by no means at an experienced level with all of this but I have had a truly ridiculous amount of problems early on. Every nurse and doctor feels bad each time they see me, like, oh my gosh you poor thing...

Here's my random tip of the night. Take photos of everything going on with your body. Even when it's going ok.

My first port was healing GREAT. Until it wasn't and got infected. But because I had taken a photo of it the day I took the post-surgery gauze off, the ER and hospital doctors could easily see the difference from before and after and how it progressed. After that I was photographing it every day. Then photographing the healing.

I had a bad reaction to chlorhexidine and/or tegaderm adhesive - having photos of my skin the night before I went in for them to see where the burning/redness had spread to after was incredibly helpful. I continued to take photos each day for progress.

So take photos of your face to compare if it gets inflammation, your arms and chest for reactions to things or vein tracking for DVTs if you have a port or picc, just f*cking document yourself like an anatomy textbook during treatment because you never know. But I also hope you all never know ;)

I won't dig through all my study notes unless someone wants to ask more but interested in any experience with the following things that supposedly help PCR/outcomes in various articles...

1. Vitamin D deficiency linked to lower PCR odds - oncology pharmacist ok'd higher supplement to prevent dropping below normal and getting periodic testing with my bloodwork
2. Prebiotics for gut microbiome - "Recent immuno-oncology research establishes that specific gut bacteria dictate how well tumors respond to immune checkpoint inhibitors like pembrolizumab" - asking pharmacist & nutritionist about this so I have not started trying but notes say "Specific SCFA-Producing Strains: Strains such as Akkermansia muciniphila, Faecalibacterium prausnitzii, and Bifidobacterium species are highly correlated with immunotherapy success" ****Important to note only PREbiotic as PRObiotics with live bacteria are dangerous, per my list
3. Minimum of 150 minutes of exercise that increases vascular flow per week and ideally 2-3 resistance band workouts - vascular exercise might be particularly effective 1-2 hours up to infusion because it increases blood flow during peak medication time to try to increase flow of drugs through the tumor itself and promote cell death
4. Special mention of Fasting Mimicking Diet - I can't look into it because I don't weigh enough and my protocol is more concerned about weight loss... the results are also not particularly impactful on PCR, from what I read, but more on radiological response.. which is still interesting.

I had an arm port for all of two weeks but it got infected the first time it was accessed for chemo. They won't do that again unfortunately. But chest ports are complicated when your BMI is 17.6. Googling just shows me a lot of illustrations but is anyone in my position willing to share photos of an port placement? Did your doctor take your weight into consideration?

I've only had two treatments so far for TNBC (1 keytruda, 2 taxol+carbo) and I've been in the hospital since Sunday.. will not get out until MAYBE Sunday or Monday if I'm lucky. I got a pseudomonas infection that got to my week+ fresh port site and then to my blood. I've been on IV antibiotics but it took them 3 days to decide to take the port out which angers me. I'm so scared everyone. I'm scared it's my fault, I'm scared the infection won't clear, I'm scared this is delaying my next chemo by WEEKS. I can't get this week's and will need daily IV antibiotics for 2-3 more they say before they feel ok the disease is gone and I can start again.

I thought it was from when they accessed the port for my treatment last week but shower water could hypothetically be a common source, how do I stay safe if bathing is a risk? What if I did this to myself? A delay this long, plus antibiotics, are such bad luck for trying to get PCR... I'm so scared I'm going to die.

I've only had two treatments so far (1 keytruda, 2 taxol+carbo) and I've been in the hospital since Sunday.. will not get out until MAYBE Sunday or Monday if I'm lucky. I got a pseudomonas infection that got to my week+ fresh port site and then to my blood. I've been on IV antibiotics but it took them 3 days to decide to take the port out which angers me. I'm so scared everyone. I'm scared it's my fault, I'm scared the infection won't clear, I'm scared this is delaying my next chemo by WEEKS. I can't get this week's and will need daily IV antibiotics for 2-3 more they say before they feel ok the disease is gone and I can start again.

I thought it was from when they accessed the port for my treatment last week but shower water could hypothetically be a common source, how do I stay safe if bathing is a risk? What if I did this to myself? A delay this long, plus antibiotics, are such bad luck for trying to get PCR... I'm so scared I'm going to die.

EDIT: Thank you everyone. I've so emotional right now. I'm still in the hospital, they pulled out the port yesterday and sent the tip for analysis. It came back positive so it most likely got infected in my last infusion.. I guess that makes me feel mildly better - if there is such a thing in this situation - where it wasn't me. I'll have to get a picc line in my left arm to get the daily antibiotics and then I guess see about another port in the future. I'm still scared, and sad, and everything feels like an eternity. But appreciate everyone's reassurances very much.

I just finished round 2 of taxol + carboplatin in the KEYNOTE so early days. But I've been staying with family and miss my house. I live alone so there's some fear with all these internet anecdotes about people suddenly landing in ER multiple times, etc. that I'd just drop dead in my living room at this rate. I'm hoping most people don't and the ones that had no big issues are out there living life and not the stories posted in help forums but just in case.. for anyone that NEVER WENT TO THE ER during chemo - what do you think helped you avoid it, especially if living alone?

(I should say, it's not like I don't 10000% appreciate my parents absolutely doting on me - I haven't made my own food in 2+ weeks haha But I can't picture not being home, never being on my own, for 5 months at my age >30 <40)

I started weekly chemo (taxol+carboplatin+keytruda) this week on Wednesday. By Saturday I felt like it'd been a lifetime. I'm staying at my parents' to watch for anything going wrong early on since I live alone but I'm just bored and tired and it's all I think about but nothing to do for it. Just this dark looming cloud of death and dismemberment and anticipating feeling like trash while I lay in bed worrying I'm not exercising enough or do small walks with the dog. If 4 days is an eternity, how am I going to not lose it in 12+ weeks?

My diagnosing office biopsied the wrong node and had me believing I was node negative but thankfully (in the grand scheme) I went with an NCI that got the right one and found a macro positive (6mm). So I'm incredibly depressed at the drastic reduction in survival and recurrence. Did anyone else node-positive get reassurances from their doctor on that or have good stories for me to latch onto? 😞

My diagnosing office biopsied the wrong node and had me believing I was node negative but thankfully (in the grand scheme) I went with an NCI that got the right one and found a macro positive (6mm). So I'm incredibly depressed at the drastic reduction in survival and recurrence. Did anyone else node-positive get reassurances from their doctor on that or have good stories for me to latch onto? 😞

My port surgery just delayed my chemo start by a week. I'm terrified. Stage 1 TNBC but grade 2, high Ki. So much research says that delay in treatment start over 42 days is a significant decrease in PCR and overall survival. Beside this, I don't know how I could have gotten things done faster between all the appointments I've had and needing a second opinion to even get chemo first.

I'll be at 43 days from diagnosis if this works out but even that I find a bit arbitrary, somehow based on how fast test results came in from the biopsy? Or from your first shady mammogram?

Is this really bad?