ER-, PR-, Her2+ Roll call
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@catarina_fm Your swallowing should improve after a couple of days of Nystatin and Magic Mouthwash. Mine did, but still can't taste. Yes, on the nosebleeding. I started using a nasal saline spray yesterday and it seems a little better today. I now have glossitis in my mouth…where your tongue is smooth and super shiny and my entire mouth tastes like salt…always! It's better today, but geez - the last three days were crazy. Nystatin is used to treat glossitis as well, so it should keep improving. I was Googling and mucositis can take anywhere from a few days to months to heal. I doubt mine will though, since I've only done one round of chemo so far. I guess this will be my temporary me for a bit. I've gone from someone who very rarely gets sick and hardly ever took meds (I very seldom even had headaches), to everything going haywire. I'm hoping my body is just in shock after the first round and will stabilize for the remainder. But honestly? I don't care what I have to go through as long as "the cancer" is being killed. My boxing gloves are on and I'm ready!
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@Baileyboo thinking of you today! I hope everything goes your way and that your healing also goes smoothly. We’re all waiting to hear from you when you’re ready!
@grammie2 i was one who got to completely skip radiation. My radiation oncologist was the one who initially made the recommendation when I went thinking I was going to be meeting her to set up the schedule for it. I consulted with my oncologist and surgeon and then also went for a second opinion from another oncology radiologist at a different institution and she agreed. All these Mds including the second opinion are at strong academic institutions. All had attended the conference where the data was presented, including the second opinion. My breast surgeon was actually the moderator of the presentation session at the conference in San Antonio where the new data was presented the week before my appointment with the radiologis. Had I scheduled my appointment with the radiologist a week earlier, I would have gotten a different recommendation from everyone. I was thrilled and having a second opinion conclude the same thing after reviewing all my records made me feel extra confident in the recommendation.
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@beekaycro24 Your attitude is awesome! The chemo drugs are truly no joke, but all those side effects will go away at some point. I had a bloody stuffy crusty nose from sensitivity that’s almost healed now. I finally at one point connected my bad stomach and diarrhea to fiber and whole grains which was my mainstay on my whole food plant based diet and switched to food that was easier on my stomach like you did and it made a difference. I couldn’t do beans, whole grains, etc. I had lots of smoothies. Everything tasted different. And then, after the chemo, it all got better. Keep those boxing gloves on! What a great way to think of what you’re doing to fight.
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@beekaycro24 @catarina_fm and anyone else needing. I had taste change as well, but usually for about 5 days, then it went pretty normal. I took Lactoferrin which was recommended by the Onc, but mainly to prevent the metal mouth taste. Not sure if it would help either of you, but thought I'd mention.
@bailey.boo you were in my prayers this morning and hope to hear how things went soon!!
@aborayis thanks for that info on radiation!! My surgeon was the first to mention the changes in protocol, then when I met with my MO after sugery, she mentioned it as well. Still waiting on the appt with the RO. I was concerned that being in a pretty rural area, our folks might be a little delayed in the new findings. But my MO was involved in the meetings. She said it would be up to the RO. I did research him and he is pretty young, 37. He looks 12 LOLOL. My husband said well, he is married with 3 kids so maybe he is 17 haha!! I will keep everyone posted once I meet with him.
It's interesting to watch the changes in medicine for sure. A few years ago, you rarely heard of chemo before surgery and now that is common in certain cancers like HER2+.
Hope everyone is having a good week so far! Hugs!
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@beekaycro24 thank you! I hope to start recovering in the meantime. It also happened to me with my previous chemotherapy that my tongue was smooth and shiny, but I never got mucositis. After these symptoms, 2 or 3 days later I had recovered. I think you should get your taste back soon. I inhaled vapours to see if it helped hydrate my nose, but if it doesn't work, tomorrow I'll buy a saline solution too. I think that in the next infusions it won't be so bad. The body ends up getting used to it a little and we ourselves already know what to expect. My first AC session was 10 times worse than the others, without a doubt! I expect this to be the same.
I feel like you. I never got sick before this, I was super healthy and active and never took medication. Now it feels like I'm constantly taking drugs.
But it's for a good reason. We will get rid of this disease and soon these will be just memories 💪2 -
@grammie2 thank you, thanks for the lactoferrin tip! I think I'll try to find that. I've been experiencing changes in taste for about 3 or 4 days now, it might get better in the meantime! I hope so.
Your RO is practically my age, he is already very adult 😁
Don't worry, I think you're in great hands. My oncologist is 28 years old! I thought the same as you, but I also know that she doesn't make any decisions alone without consulting other doctors. Our treatments are practically standardized and based on statistics. Trust, it will go well!1 -
Go get ‘em warriors!!! This is me pre-op. Now I have hair…
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@djschmidt1 I love it! 💪eheh your pink gloves are amazing 🤩 I can't wait to have hair again...
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@djschmidt1 You look awesome in that pic! I’ve never seen those pink boxing gloves before. I love it!!!
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@djschmidt1 that is an awesome pic!!!
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Thanks all, they had this set up at the breast center (st joes south in Tampa) and my daughter took me for my savi scout that day. It was a photo op moment.
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Checking in and will catch up with you all soon! — Home and resting! Everything went well today. It was a long one!
Laying here finding my big PDF of post-op instructions and found post-op reports in my patient portal: 4 sentinel lymph nodes were removed from the right side and tested during surgery, and those immediate tests showed 3 nodes negative for cancer, and the 4th (big blue) containing benign tissue (non-cancerous). That will be confirmed again with a more thorough pathology test that should be ready in about a week or less. It LOOKS like chemo did its job, but I’ll need to wait for that official pathology. (My MRI and PET had showed one definite positive node with traces in 2 others.) Post-op reports also showed negative margins so far. 🙏🏼🙏🏼🙏🏼 Oh, I pray it’s all good news! It sounds promising, so I’m hopeful.
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@bailey.boo so glad it went well and will pray for continued great news!!
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@bailey.boo SO happy all went well today! I'm sending lots of good hoogie-doogie vibes your way!
@djschmidt1 Love, love, love your pic!
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Catarina - I think you said you were having bone pain after Zarzio which I believe is the equivalent of Neulasta? Not sure it's available where you are, but plain Claritin really helps (Not Claritin D). I took one before the night before and one the evening after. I have never seen an explanation why it works, but it does.
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@minustwo I totally agree with the plain Claritin. I received chemo on Thursdays and by Sunday I would feel a little achy, but not too bad. I decided to keep taking the Claritin because of "weepy eyes". My eyes would constantly drip and run (finally stopped about 4 weeks post chemo). It seemed to help a bit with that as well. I read that the weepy eyes can also be a SE of Perjeta. Ugh! I start back on Phesgo tomorrow so guess I will find out if my drippy eyes was TC related or Perjeta.
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Y'all…I can taste some things today! Woo-hoo! This was the first day I woke up with a different taste in my mouth other than salt. Can you tell I'm excited? lol On the flip side, my hair is slowly coming out. I went to run my fingers through to try to tame it when I got out of bed, and came out with many strands of hair. Hair loss has been on my granddaughter's mind. She texts me every morning asking if I'm bald yet. I think she's curious to see what I'll look like without hair. Well, looks like she's going to find out!
@grammie2 - Crazy as it sounds, weepy eyes is actually sympton of dry eyes. Maybe some moisturizing drops will help? I have dry eyes and ocular hypertension. I use a warm eye mask every morning along with Refresh Tears eye drops. The warm mask helps your eyes produce their natural oils. I also use a morning and night time eye drop to reduce the pressures in my eyes. Both of those make your eyeashes grow. I'm really hoping I don't lose my eyelashes…mine are so short anyway! But…if I do, I do.
I agree on the Claritin. My onc had me take the morning of my shot, then for four more day (5 in total).
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@bailey.boo Glad all went well. Praying for you for more good news!
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I go for my first post chemo Phesgo injection. MO seems to think that I did so well during chemo, I shouldn't have any major issues. I do plan to work from home tomorrow just in case.
I have an appt next Friday (10/11) with the RO and am anxious to see what they say.
@beekaycro24 I've heard that about dry eyes, and I do have a mild case even pre chemo. I tried all of the OTC drops and nothing seemed to help with the weeping eyes during chemo. Just hoping the Perjeta in Phesgo was not the culprit instead of chemo. Going to continue taking Claritin to be safe.
Praying everyone is feeling well and having a good day!
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Hello everyone!
@bailey.boo in fact, I still stopped by to see how your surgery went, I saw that it had gone well (clear margins, yay!!!) and I was happy for you, but I had a challenging few days and I couldn't even write. How are you feeling now? Are you already moving your arm? Have a nice recovery!
@minustwo @grammie2 @beekaycro24 I am learning a lot from you! Thank you for the claritin tip… I had so much bone pain, especially in the hip area, that I started crying without being able to lie down at all. Paracetamol helps, but I need to take it.... I took paracetamol on the first 2 days of injection, on the third and fourth I thought I no longer needed it, on the fifth and last day I thought I was going to die. I'm going to tell the nurses about this claritin, I checked that it's an antihistamine but if it works I want it too! Next time I won't be off guard (yes, zarzio is the same as neulasta).
Furthermore, I had (and still have) mucositis in my throat. I'm taking nystatin but I think I started late, when I started to feel a scratchy throat I thought it was due to the infusion but it turned out the mucositis was already starting.
I've been having a lot of nosebleeds, which combined with not being able to eat much because I have intense pain in my throat, is making me quite weak. I'm lucky I don't have diarrhea so far, otherwise I don't know.
I thought AC would be worse since I hate nausea, but in the end, the taxane/zarzio/Phesgo (I doubt it's from phesgo) brought me everything else except nausea. The first few days fooled me but it was due to the effect of the steroids. Anyway... I hope next time it won't be so hard.@grammie2 good luck and tell us if you experienced some side efects from Phesgo! I hope not!🙏
I hope you are all well!
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Thank you all for the prayers, and I hope everyone is doing well. I’ve missed a lot, so I’m trying to catch up with all the posts! lol! .@djschmidt1 I love, love, LOVE that picture you shared! 💕 And @beekaycro24, I hope the mucous infection is subsiding— grammie mentioned Lactoferrin when I was first going through chemo, when my thrush was the worst, and that and saccharomyces boulardii probiotics helped me greatly. @catarina_fm I hope you’re doing better too! And @grammie2 GOOD LUCK with that phesgo and I’ll be looking to see how that went, since I’ll be next in line in that situation!
Day 2 post-dmx update: Hanging in there! Trying to relax into my recovery time off— it’s hard knowing what to do first. Should I read? Color? Journal? I never get time like this to myself. Aside from a very angry, itchy case of contact dermatitis that’s decided to spread from the backs of my ears all the way down to my belly button, I’m doing okay. 😅 The itching and burning are actually a nice distraction from the surgery discomfort. Luckily, I don’t think it has made its way to totally to the surgery site! I’m allergic to just about everything (even hypoallergenic stuff), so I figured this would happen. I’ve already messaged my doctor, and she’s prescribed steroids, but advised they’re a last resort since they could slow down wound healing. So for now, it’s Claritin first, and if that doesn’t do the trick, Benadryl is next in line! Fingers crossed the itch calms down soon! 🤞I had to send day 1 pics to my plastic surgeon through my portal, so that wasn’t fun to do, but they want me to come in 2 days earlier for my first post-op appt, because my bandages at the wound sites are saturated more than expected. I’m pleasantly shocked— it looks like I actually have nice little “foobies” from the expanders! Cancer-free is the goal, but I’ll take the little bonuses where I can!
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@catarina_fm The first round of chemo was definitely my worst for me, it got better after that. I knew more what to expect and what to do. Attaching what helped me with nosebleeds— just the cheap store brand moisturizing saline did wonders for me. And when my eyes started acting up right after my nose got under control, Optase brand wipes and night time drops worked miracles for me. Take care, and I hope you feel better soon!! 💕🧸
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@bailey.boo thank you! Maybe next rounds will be easier... I hope. I am going right now to buy a saline solution like this to hydrate my nose. It is a good idea!
I hope everything is healing nicely! Take advantage of this time to do those things you never had time for. My sister has already offered me some coloring books so I don't get bored when it's my turn 🤣 I personally like to read and watch tv shows when I can. I'm sure you'll be able to entertain yourself🌷you will be healed in no time!
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My hair started falling out a little on Tuesday (day 12 after chemo) and a lot yesterday. I was so scraggly looking. I hung out with daughter and granddaughter to while the hubs golfed. I took my clippers and let my granddaughter shave my head. We all had so many laughs during this time. Laughter is so good for the soul. On a side note…I'm really glad I don't have a big ol' water head. My daughter said it is perfectly round and that I must have been held a lot as a baby. :)
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Totally agree with your daughter. I saw you on Insta, and you look amazing! 💕 If you do decide to go the wig route, don’t make my mistake— measure your head before buying! It makes a HUGE difference in both comfort and how they look. I’ve always assumed I had a big head, but I’m petite! This resulted in lots of baggy, bunchy wig caps that made my ears look ready to take my head flight and needed so much modifying and learning curve to get passable. I trashed one or two nice ones, even though I practiced on cheap ones first, and those nicer ones aren’t cheap!
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@beekaycro24 saw you also on insta and loved it 😊 you are so positive! Regarding the wigs, the "good" ones were so expensive here that I ordered one from AliExpress (maybe you don't have it in USA?). Basically it is from China, 20 euros and I think it is quite good! 🤣 Not as curly as my own hair, but I like it! I know I look sick because I am pale and losing my lashes now (and I am very bad with makeup 😅) but I think if you have the chance to buy a cheaper one first, go for it! I confess that I only wear a wig because I don't like people looking at me with pity, as I once heard: "poor thing, so young". I know I shouldn't care about what others say but I prefer to go unnoticed.
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Love your wig @catarina_fm! I'm probably just gonna be au natural. I have several hhead wraps that I'll wear. @bailey.boo - thank you for the wig advice! I'll keep it in mind if I do change my mind. I am a fickle person…
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I also have headwraps, I only wear the wig when I have to go out and it's depending on whether I feel like it or not 😅
For me, I can't go out with my head uncovered because it feels cold! I don't want to imagine what it will be like in winter brrrr🥶
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You’ll look amazing however you go!
i love the Ali wig, @catarina_fm! I got my extension baseball hats at Temu as my throw-and-go’s. Love them!1 -
@bailey.boo thank you! Oh we also use Temu! 😁 So you understand me 😁 Even though it's cheap, it works perfectly! We need to be however we feel most comfortable 🌷
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