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My Chemotherapy Journey

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pneuma
pneuma Member Posts: 88

My infusion nurse suggested I make a journal so I will do it here hoping people can find information that may be helpful to them. Let's start:

June 11 - port placement. It went well, I guess. But not sure if there was an injury with my surgeon. I saw him discussing something with the nurse like his finger got pricked or something. Probably why my stitch was not done all the way. Who knows. I am not happy that they only put surgical glue on stitched areas and not covered it with bandage.

I was there 12:30 pm and was released past 3 pm. I probably waited almost 2 hours to be wheeled in OR. I was shocked my surgery room looks like a mess. They only started prepping my surgery room when they wheeled me there. LOL. Not sure if that's normal.

The surgery was not painful and actually only took half hour(?). I was conscious. Then they wheeled me back to my room. My OG nurse said for the 2nd time, I will be there for 1 hour to monitor me I guess. She gave us snacks and drink. Well not even 10 minutes after she left and while we are munching on the snacks. A girl walked in and announced - you're going! LOL. And mind you I have not finished eating my snacks so she is in a hurry so I just pocketed my unfinished cookies and slurp the last of my orange juice.

June 13 - PET scan. No issues…. yet. Went well…. and then…

June 14 - burning sensation PAIN in my tumor site! It was so painful I was up all night. I was miserable!

June 15 - Burning pain intensifies. I called my husband crying. He told me to call my doctor's office. I did - hooked me up with the nurse navigator. Told me to take Tylenol and she will call my doctor to prescribe me a pain meds. I took Tylenol. It helped. No call back about my pain meds.

June 17 - appointment with the nurse just giving me information about my upcoming chemotherapy, tour me where I will get my infusion. I told her I did not get a callback about the pain meds. She told me my pharmacy should have called… whatever. I got the pain meds that day along with other meds like steroids and anti nausea/vomit drugs.

June 19 - THE day. Chemotherapy day 1. I met with my onco first. I seen my PET scan result. I did not like this word - NECROTIC/PHOTOPENIC If there is a concerned doctor reading this please explain this to me. Because my . onco said - it looks good no other areas or whatever. I don't know I was waiting for her to mention that bolded result. So I again, whatever. Trust in science, right?

My nurse gave me a cocktail of benadryl, pain meds, anti nausea and steroid. Then gave me herceptin, perjeta, and the Taxo thing. I am on TCHP protocol for Stage 2 - ER+, HER2+ breast cancer now NECROTIC/PHOTOPENIC according to my PET scan report.

The benadryl knocked me out I thanked my nurse then she proceeded to tell me it's really not in my protocol so next time she won't give it to me but I can buy benadryl and take it with me next time. LOL. K.

Thank God. So far… no issues!!! Today is the BEST I have felt since I got diagnosed last month!! No pain! both from the surgery and my chemotherapy! I forgot to mention I had sore from the moment they discharge me from my port placement but magically, MIRACULOUSLY it went away June 18 day before my chemo! Allelujah!

I am not happy with how my stiches look like though. I told that point blank to my nurse navigator, my onco, my infusion nurse. No surprise they're like oh it looks fine. LOL. K.

I still want this seen by medical professional. I hope it's not infected that's what I told them and they said it's fine. K.

So for now the only thing bothering me is my stiches. So far so good. Thank God.

Now why do I have no side effects yet, on my day 2? Who knows. All I know I want to take advantage of it and washed my bedsheet today. While I can. I have a bowflex trainer. It's an exercise machine. I get in there last night after my chemo and use it for honestly not even a minute. LOL. All I want is to get my heart pumping. I also did it before I left my house for my chemo day 1.

I also use it whenever I feel like it. Not really long like I said a minute or 2 just to get my heart pumping.

I stopped drinking coffee. I probably will until I finish my entire chemotherapy sessions. I stopped drinking soda way before my diagnosis. Most especially PLEASE drink as much water as you can! My nurse navigator said she can't stress this enough just hydrate as much as you can!

What I do actually is whenever I pee which is a lot now…. I drink water immediately after!

So far so good. I have not taken any anti nausea/vomit drug or pain meds!!! Thank you Lord!!

It's my long journal for my cancer chemotherapy journey so far. I hope it can help someone out there.

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    pneuma,

    Happy to see that you’re moving forward. Some of your concerns, i.e. the state of the operating room, are facility specific so I would address any concerns over cleanliness with the facility. However, in general I would say surgery/procedure rooms are not messy. As to your port, if it’s been looked at and no problem seen then try not to worry unless things don’t heal. I can’t remember what my port incision looked like in the days following its placement but if you’re keeping an eye on it , and doctors say not to worry, then you’ll be fine. If you’re “not happy” with the way your stitches look, do you mean cosmetically?
    You were concerned about the terms necrotic and photopenic. Necrotic tissue is metabolically dead tissue and photopenic, a new word for me, is similar: "Photopenic" just means that the area doesn't show up as picking up any signal on a scan like a PET scan, so it has very low or no metabolic activity, even less than normal tissue, like a dead part of a cancer or a hole where there's no tissue at all”

    Although that doesn’t seem like anything concerning, I am not a doctor so your best bet is to call and ask your mo. Overall, messy procedure room not withstanding, it sounds as if things went well. Take care

  • zen1028
    zen1028 Member Posts: 84
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    Thank you for this pneuma. I am posting on this thread so I can follow your journey/blog. I think its great to have one do this . I think it helps mentally and also help others that may be going thru it or deciding if they want to go thru with it.

  • pneuma
    pneuma Member Posts: 88
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    Thanks. I think it's a botched stitch. Like there's wrinkling in my skin. So really the scar would look nasty. The stitch site itself does not hurt but it looks gnarly, I told my husband that I had a pain between my stitch site running to my armpits the whole time after I was discharged and it went away day before my chemo session.

    And then he reminded me - it's the steroids!! OMG. Now I am scared it will go back - that pain once the steroid wears off. Today is the last day I take steroids. I will definitely write down EVERYTHING I will experience once the steroids effect wears off.

    Hoping for the best…

  • pneuma
    pneuma Member Posts: 88
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    Thanks. Yes that's what my infusion nurse said that it will really help me mentally and you can re read it in the future and see in real time what you had experienced during your cancer journey.

    To be honest, I didn't even want to get chemo. It's literally poisoning our entire body. But my husband insists. Also my sister who is a doctor who is currently also going through chemo. Hers is fallopian tube. She told me chemo protocol had been studied and they won't make patients go through it if it's not proven to work.

    And I actually plan to not do radiation after surgery like my onco told me would happen but my niece who is a radiologist assistant said the same. It works. So OK… then. I will give science a chance to prove me wrong I guess.

    Hoping for the best… always.

  • pneuma
    pneuma Member Posts: 88
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    I want to add. One of the common side effects they said is mouth sore. So since the treatment is basically gargling with baking soda and salt mix with water 3x a day. I do it like from day 1 even though I don't have mouth sores anything yet. Just curious if it helps lessen the mouth sores..? Who knows.

    I guess we shall see as my journey goes on.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    pneuma,

    I don’t think anyone wants to do chemo but they do want to give it a proven, though not perfect, treatment as it’s their best shot at keeping recurrence at bay. Yes, it is systemic and there are side effects, though dealing with those has improved by leaps and bounds but there is scientific data that evaluates its efficacy and its problems. This information is easy to find online.
    Again, there are alternatives a plenty but precious little evidence, beyond anecdotes, to back up their claims but this doesn’t bother some people. Ultimately, we all have a choice. Hope you continue to do well and that your stitch issue resolves soon.

  • pneuma
    pneuma Member Posts: 88
    edited June 21
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    Regarding my stitch, after I showered last night, I can't believe how the wrinkling and gnarly dried bloods are gone! OMG. wow. Thank God.

    Now I regret peeling off the smaller surgical glue sooner. That one is not healed completely yet meaning it left a scar that look like a skin is missing on the incision site. Oh well. I just rub petroleum jelly on it. Hopefully skin will regrow in the area.

    I definitely love how the bigger stitch area looks like now. Glad I didn't try to peel it off like the smaller stitch.

    Allelujah.

  • pneuma
    pneuma Member Posts: 88
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    Moment of truth. Steroid drug effects are gone as of today. I woke up with a slight headache. My hands - fingers and palms are itchy.

    Still continuing drinking water immediately after peeing. Still continuing using the bowflex trainer to jump start my heart pumping as often and as little as I can like I said a minute or two. Enough to pump my heart and not get me breathless or fatigued.

    I think the most important that the nurse navigator told me that I will follow is that to hydrate as much as I can preferably water. And that she said - you don't want to be just laying in bed all the time. Move as much as you can. But if you really feel faint and fatigue then don't force yourself.

    I also want to drink as much water as I can because I remember what the MRI staff told me. To drink water immediately after because you don't want the stuff she injected me sitting in my kidneys.

  • pneuma
    pneuma Member Posts: 88
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    Still as of today, I have not taken any of my pain/nausea meds. Diarrhea today. No appetite but I just eat when I have to. Food is tasting weird.

  • pneuma
    pneuma Member Posts: 88
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    Woke up..itchy..itchy…scalpy…. writing in zombie groan…. (just having fun channeling my fave game - resident evil - diary entry in the game.)

    Woke up in the middle of the night just tossing and turning, feeling like shit awful. Thankfully now l feel good. I feel weak though. No joke though. I thought today would be the worst. Hardly ate yesterday I have no appetite. My head is super itchy. Hairs are ready to fall off I guess. Feeling achy. Which most curiously is ALL on the RIGHT side. My breast cancer is on the RIGHT side too. I wonder if there's a connection. My port is placed on the LEFT side.

    Most aches is in the hips/pelvic area, neck side and head side. Still after all, have not taken any prescribed meds yet, and I probably won't unless REALLY necessary for pain and nausea.

    Drinking lots of water helps. Kinda makes sense too since chemotherapy is literally poisoning your whole body, greatest antidote is to dilute as much of those poison. That's my take on it.

  • pneuma
    pneuma Member Posts: 88
    edited June 23
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    I would like to add the BEFORE entry for a COMPLETE anecdote of my living nightmare.

    How did I see the lump? I was showering. What's weird was I thought I was dreaming. Nope it's real. What did I do? I ignored it. Yes, I did. Why? I don't want chemo, I don't want radiation. I don't want surgery. I NEVER ever had a major surgery in my life. This would be my first. Although who knows, science probably would prove me wrong after all and shrink the tumor.

    I knew, I knew right there and then it's cancer. My mom had it, my sister currently has it. I ignored it for - A YEAR!

    So it's my fault I guess that it grew. I was ready for the cancer to run its own course. but UNFORTUNATELY, my husband intervened.

    Knowing that I let the tumor grow for a year, my breast surgeon gave me 2 scenarios - surgery then radiation OR neoadjuvant therapy then hopefully lumpectomy.

    She told me with the size of my tumor 3 cm. lumpectomy will leave an ugly scar. And that I won't like that. She suggested neoadjuvant therapy as well as my onco even before I have a breast surgeon assigned.

    I also remember distinctly what my breast surgeon said, that my body is basically a laboratory. So yes of course I am one of their lab rats now. She said if they take the lump they can study it the usual in the lab but since I am now their living lab rat, I guess they will study how a one year old tumor will respond to neoadjuvant therapy. which became NECROTIC/PHOTOPENIC as per PET scan result.

    I was officially diagnosed last month. I did not even flinch when my PCP called me to let me know. Like I said. I already know that day in the shower.

    I am living my nightmare because I can't believe I am now undergoing chemo and in essence a human lab rat. Who knows, my living nightmare might probably add something USEFUL in their living experiments. And I honestly hope so. At least this pain and suffering won't be a waste.

    I hate that I am now a living experiment. I hope science will prove me wrong but only time will tell.

    Cancer is my OWN resident evil. I guess it's time for me to channel my inner Jill Valentine to beat the NEMESIS!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    pneuma,

    My heart is heavy for you. I can clearly feel how your current situation conflicts in many ways with your instincts.
    Though stage IV, I have never had chemo so it is difficult for me to personally comment on the experience. Most say that it is not fun but it is doable, but of course, individual experiences vary widely.

    The human body, for as much as we think we know about it, still holds many mysteries. One of those is the variety of responses that people have to medication/treatment. So in essence, every time a person receives a med or treatment, they are participating in an experiment of sorts as it’s often impossible to predict reactions and outcomes 100% of the time. This is not only true of cancer drugs but virtually all meds including natural supplements. Will it be worth your pain and suffering? There is documentation to indicate that the majority in similar circumstances did quite well. Does this have any predictive value? Absolutely not so there are no guarantees but the odds are in your favor when you look at historical data (odds, not prognostic).
    We all fervently wish there was a side effect free, natural, 100% guaranteed tx for bc. Since there isn't, know that many here are holding your hand as we have all walked some part of the breast cancer path and are still here to tell of it. Take care

  • pneuma
    pneuma Member Posts: 88
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    Thanks. True. You really don't know how the treatment/drugs wiil affect every individual. For now, basically water boarding myself to dilute the toxicity of chemo alleviates the side effects and for that, I am glad.

  • pneuma
    pneuma Member Posts: 88
    edited June 24
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    Ok, so far as of today my side effects:

    Diarrhea

    Weakness

    Loss of appetite

    Food tasting weird/sense of taste is affected

    and to my utter shock at 52, I am getting pimples/acne in my cheeks/face- bumpy red ones - UGH.

    STILL has felt no need to take pain/nausea meds.

    Right now, I feel good. Just feel weak all around. Also I tend to toss and turn feeling uncomforable/achy in the middle of the night usually coz I am hungry because I have low appetite.

  • pneuma
    pneuma Member Posts: 88
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    Today is a good day I guess. I full on did household chores - laundry, vacuuming well sort of cheating using my robot vac but cleaning all the filters is DEFINITELY harder, and later I'm cooking.

    But of course I took SEVERAL breaks just too weak and too tired while doing the chores. Oh well. At least I am sort of back to normal. Still diarrhea, still low appetite.

    I was very happy I did not toss and turn feeling shitty, achy, hungry in the middle of the night. I wonder if my drinking sparkling water yesterday was the reason. Who knows?

    All I knew I feel fine today. And I hope I would be my entire chemo session. Only time will tell.

  • pneuma
    pneuma Member Posts: 88
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    I went to my Onco's appointment today. Toxicity check, apparently. My first stop is the infusion so they can draw my blood. CBC panel - this is probably my 5th by now since my diagnosis last month.

    Well, I waited and waited - took them long enough to draw my blood that I came in late for my Dr's appointment next door. UGH.

    At least the lady that drew my blood was nice to offer for her to wear mask around me. I came in with my mask on - just want to be careful.

    To my doctor's office next door. I went down 4 lbs. since my last visit. Everything seems normal except the CNA said my heart rate is high around 101 if I am right.

    They always gave me a robe from waist up to change but this time they didn't. OK… my doctor came in, never bothered to wear mask around me, whatever. She also seems to be in a hurry. Then since my blood panel result did not came in yet, she just dismissed me for the day. LOL. But said she will call if she sees something not good. OK.

    She did want to check my right breast so I had to lift my shirt and take off my bra for her to see. Then took me a hard time to put back my bra while talking to her. LOL. Just annoyed why they didn't even bother to give me a robe in the first place. UGH.

    Now the acne/pimple in my face…. I realized today. I don't think it's just me breaking out. I think I am developing red bumpy hives. I told her that. She asks if it's itchy, it's actually not, really. She said to use benadryl ointment. OK.

    So now those red bumpy hives that are not really itchy is now in my scalp, face, neck and chest.

    I will mention this again on my next appointment which is on 7/9 for surprise, surprise - ANOTHER blood work. Chemo for 4 hrs, the next day.

    I hope those red bumpy hives is nothing to be concerned of. but… as always… time will tell.

  • pneuma
    pneuma Member Posts: 88
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    Ok, I want to add. I probably will stop drinking sparkling water. I have a soda stream. I just make sparkling water with it nothing else. So I guess I will see if my tossing and turning feeling iffy in the middle of the night waking up hungry will go back.

    I did not like that the sparkling water made my stomach bloat. Nope. So far the only liquids I drink:

    plain water, coconut water, fresh and frozen fruit milk smoothies.

    I look at mychart and have seen my blood test result, Not looking good. Looks like my neutrophils are low. Glad I wore mask today. There are also some low and high results there that is concerning me.

    I wonder if my doctor will bother to call me about that. I ain't holding my breath on that.

  • pneuma
    pneuma Member Posts: 88
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    I actually searched about my red bumps. Found this:

    “Chemo rash” simply refers to the various types of rashes that may develop in response to cancer treatment. This may occur not only with chemotherapy, but also targeted therapy, immunotherapy, radiation therapy and bone marrow transplant. It tends to look like acne or measles, and in some cases, it’s a sign that treatment is working.

    I like the one I bolded. I hope that yes, my chemo is working. but I don't like that my blood test result is all over the place.. UGH.

  • pneuma
    pneuma Member Posts: 88
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    Today is uneventful. I hope it will be the same on my round 2 but who knows? The only side effect that bothers me for now is these chemo rash - red bumpy ones on my scalp, face, neck and chest. I hope they don't spread further or get worse. At least they're not as itchy. The scalp started itchy but it is not anymore.

  • pneuma
    pneuma Member Posts: 88
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    Welp. I jinx myself, I guess. I think today is when I had 3 diarrhea in 1 day and the last one was really watery and really concerned me because I was still eating when I had the urge. So not good. I didn't like that. And especially my onco kinda scared me that I NEED to take imodium if I am having diarrhea she said something about you don't want to damage your kidneys and losing water/electrolytes.

    I ask her when should I take imodium she said after your BM. And so for the first time, I take imodium. I also called my husband and asked him to buy me pedialyte.

    My last blood test indicated my glucose is high and my sodium is low. So yeah.

    I also was kinda concerned that my temp is a degree higher today. I always clock at 97 when I check my temp and today it's 98.

    I was told to let them know if my temp went over 100.4.

  • pneuma
    pneuma Member Posts: 88
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    When I took imodium yesterday, I didn't like what I felt. That's why I never take any anti diarrhea. I honestly prefer them out than in. IT works. Not had BM since I took it.

    But I felt like it's going the other way, I didn't feel good, pukey. But when I drank pedialyte, I felt better.

    The sore between my stitch and my armpit came back. I kinda blamed my husband because his package arrived and it was kinda heavy. I should have just left it outside. UGH.

    I was reading the info packet the nurse navigator gave me and I was shocked that my hives/red bumps was supposed to be where I call them to let them know because I maybe allergic to one of my chemo drugs.

    MY onco meanwhile just told me to use benadryl ointment. Well, not sure now if I can do round 2. Hopefully I won't break out more. I hope round 2 goes well like round 1.

    So the sore in my stitch site coming back is the 2nd one that worries me. The first one was these red bumps. Thankfully they're really not itchy.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    pneuma,

    You go girl! I really admire your honest evaluation of your chemo experience. Though I have no personal experience, from what I’ve read it seems as if your physical side effects are typical but it’s a good thing you’re monitoring yourself carefully. Benadryl ointment is commonly used to treat rashes from a variety of things including allergies. Take care

  • pneuma
    pneuma Member Posts: 88
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    Thanks. Yes I want my journal as raw and real as I experience it.

  • pneuma
    pneuma Member Posts: 88
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    I like that 1 pill of imodium yesterday seem to have worked. I only had 1 BM yesterday, YAY. Also last night my husband tugged a portion of my hair I was like — what the hell. And he was like - I just want to see if it will come off… UGH.

    Well no hair came off…yet. Still have my hairs. I wonder if they start falling off by round 2? who knows?!

    I feel good in general. Thank God. And I seem to have appetite to eat even though food tastes weird. UGH.

  • pneuma
    pneuma Member Posts: 88
    edited June 30
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    Ok. Now I'm worried that I have not a BM yesterday at all. UGH. And I keep waking up in the middle of the night having the urge but no luck and I mean like I am sitting in my bathroom for hours trying….. up to when I woke up today enough for my husband to yell —- are you ok in there? UGH.

    So what did I do today? I am drinking coffee! The main reason I stopped drinking coffee is it only has 1 effect on me. It makes me poop.

    So hoping the coffee will do its main effect on me today!!!

    Well that was fast!! SUCCESS! Thank you coffee! LOL. And yes I am typing this from my bathroom. Welp.

    TMI…. my BM is normal not diarrhea. Double success!!!

  • pneuma
    pneuma Member Posts: 88
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    Well this was a surprise. And it seems it's not boding well for me. At least from what I searched so far but as always, only time will tell.

    My period came last night. I am perimenopausal. My last period was November last year. After I pee and was about to flush I was shocked to see 2 blood clots in the toilet bowl and when I wipe and there was a drop of blood I can't believe my period came.

    All I know - I was eternally thirsty yesterday even though I just drank water and my mouth does not feel dry.

    My appetite is back though food still tastes weird. I hope my period is the reason my stomach is super bloated. And while I was showering my right breast that has the tumor also looks like it's swelling.

    Other than that, I feel fine, no pain or anything. Oh I actually ate salad yesterday, I didn't know it has blue cheese which was apparently you're not allowed to eat during chemo. Not sure if I really ate that much anyway since I never noticed it nor taste it. - my taste is off. And I stopped eating it right away when my sister mentioned it has blue cheese. She didn't know I'm not allowed to eat it.

  • pneuma
    pneuma Member Posts: 88
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    I just sent detailed notes on mychart. I googled what causes unquenched thirst and I think I am having sepsis. I woke up my husband really early in the morning today. I told him to check my blood pressure. The reading is high. So not good my BP reading has always been normal. Then I also checked my temp. I always clock at 97 went up 98 today I am down 96.

    It sucks my (DONT) care team opens in 2 hrs. Let's hope I am still alive by then, eh.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
    edited July 1
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    pneuma,

    Sepsis can become life threatening. Please keep monitoring yourself and go to the ER if symptoms increase. That being said, although googling can be helpful, self diagnosis of a potentially life threatening is never a good idea!

    As to the bleu cheese, were you given information about diet, side effects, restrictions , etc. when it comes to chemo? All of that info should have been provided to you, if not please ask for it so you are aware of any other dietary restrictions or things to be aware of. Take care

  • pneuma
    pneuma Member Posts: 88
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    Thanks. Yes I was given info packet by the nurse navigator. Not sure if she mentioned blue cheese to me verbally but it was there on the list on the packet she gave me.

  • pneuma
    pneuma Member Posts: 88
    edited July 1
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    Well I was able to nap. I just woke up with a headache. I RARELY have headaches. The nurse navigator replied to mychart and basically said she's not sure where I read I might have sepsis and that looking up things online can be scary. LOL.

    She said it looks like I am managing well. And that the bloating might be because of my period and my chemo. OK. She also said to keep hydrating. She said my BP and temp reading is normal. OK.

    we'll see then…