Starting Chemo May and June 2024 Support Thread
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Hi all - I was recently diagnosed ILC in my left breast ER+, PR-, HER2-, MRI showed tumor about 3cm but with a lot of non-mass enhancement (they are not sure what it is) that brought the size up to 9cm (ugh). My Oncotype score came back as higher than 26, but since this is my second diagnosis (had IDC in my right breast in 2017, no chemo or rads, just mastectomy with hormone therapy) and it happened while I was on anastrazole, I'm glad that chemo is an option to treat this as aggressively as possible. Meeting with my med onc tomorrow to get more details about chemo etc.
I expected that I would likely have to do chemo, but now that it is a certainty am feeling pretty sad. I'll add that to the anger I'm also feeling because this is my second time around with breast cancer! I'll probably cry about it tonight. Ugh so much crying these days. Am really happy and thankful to have this group to check in with!
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@ebfitzy @justsnapd8 @jlhmom75 I'm feeling VERY emotional about my hair in the last couple of days. For some reason it's the one thing I can't reconcile with. I've cut my normally LONG hair to just below my ears but wondering now if I should just shave it and get it over with? I'll be in Disneyland the week it's meant to start falling out. Dreading it
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@maitri - Welcome to the group! We're so sorry to hear about your recent diagnosis, but really glad you found us.
We understand the mix of sadness and anger you must be feeling right now, and it's important to allow yourself to process these emotions. Meeting with your oncologist will provide more clarity on your treatment plan and will help you feel better and understand the steps ahead. Please, come back to let us know how it goes, and lean on us for support and share your feelings. You know that you're not alone here!
Sincerely,
The Mods
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@maitri I'm so sorry! Being diagnosed once with breast, cancer is devastating. But twice I cannot imagine! Once you accept that chemo is inevitable, you can start planning for it. I haven't started chemo yet but my Med Onc assures me that they no longer give you a bucket and tell you to deal with it. I have three or four prescriptions for nausea meds; I hope they work! Then there's your hair! What to do with your hair before hand, and how to manage having none. I've had fun shopping for scarves and caps and you'll find what you think is right for you. Big hugs!
@sarahjunefox My hair has been long and short over many years, so I don't have the emotional attachment. You are stronger then I am in the fact that I postponed chemo because of my vacation, and you forged ahead! I'm older though and don't have children. You don't want a shaved head at Disney if you don't have to. Maybe a seriously cute pixie cut?
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Hi everyone!
I hope you feel better soon, @jlhmom75 and @lyniepooh 🧸❤️Hi @maitri. I’m glad you found us, but I’m so sorry about your new dX. 💙
Sunday was day 13. Talking to someone, I tucked my hair behind my ear and came away with a clump of hair. I yelped, then laughed it off, even though I felt a lot worse. This morning, the very top of my head is tender, and I’m losing hair a little faster. I’m putting off washing it and being verrryy gentle with it, trying to stretch it out as long as possible. I hate the free and cheapie headwear I have. I may baseball cap it, once I have to shave it. I’m also losing hair lower down now. (Secretly hoping I’ll lose the leg hair and won’t have to shave my legs all summer.)2 -
Thank you so much!
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Thank you so much! Sending a hug right back at ya!
And thanks for the tips about the nausea meds. I tend to be prone to nausea so I'm hoping to get as much support on that front. I was scared it would be "here is a bucket and just deal with it" but realizing and being grateful for all of the medications and other options we have.
In gratitude,
Maitri
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I'm scheduled to have my port on the 13th. First TCHP treatment starts on 6/25/2024. I'm very anxious!
DX ICD left, ER+PR-HER2+
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I’m now day 8 post infusion 2 and on the upswing. I had to get fluids again (day 6) so I’ve just scheduled getting fluids next time about 24 hours after the infusion. I made it my job to drink fluids this time and it still didn’t fix the dizziness. The dizziness is definitely my worst symptom. Seriously though – where does the water go? How does the chemo just suck it up? If the last two experiences continue, I need to plan that I just can’t drive from days 3 to 6 or so.
@sarahjunefox Hope your sinus infection is gone now! I chose to cut my hair because losing it bit by bit was making me upset so many times a day. I personally felt I just needed to get it off and deal all at once. I don’t think it was a perfect solution, but I’ve stopped thinking about it all day long as I find hair all over me and I don’t jump when I catch a glance of myself somewhere. I hope you have fun in Disneyland!
@lyniepooh I too am frustrated with the damned if you do and damned if you don’t digestive issues. I feel like I should be able to find the happy medium, but not so far!
@ebfitzy My insurance didn’t approve the Neulasta shot so far. I have to get sick first apparently for them to approve it. My WBC has fluctuated wildly because of some extra steroids I needed for a rash but so far the doc says I’m okay. I just wanted to mention this because even though I haven’t had that shot, one of my SE has been bone aching especially in my hips and feet and it must be from one of the chemo drugs. Tylenol has helped.
@maitri I’m so sorry you are having to go through this a second time. I think that will be all of our worries for the rest of our lives. At least it feels that way right now.
@justsnapd8 I have to say the nausea is really been almost the least of my SE. Sooo happy it’s no longer “here is a bucket”!
@bailey.boo Hugs on the dealing with your hair. It stinks.
@dw0330 Sorry you are here, but nice to “meet” you.
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@jlhmom75 Sounds like you're dealing well with the SE. Sorry you're dealing with dizziness, I know that's miserable too. 🤗
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@jlhmom75 insurance sure can suck to deal with. You’d think they would want you to AVOID the extra health issues that will cost them even MORE money. I’ll never understand it.
I had my port placement yesterday. I am sore today and hurts to turn my head to the left. I hope this gets better quickly. I feel like the most sensitive part is the incision on my neck.
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@ebfitzy I had my port placed on Tuesday and it was sore all week and bruised, hope you feel better as the week progressed. Mine is feeling less painful today. Chemo starts on Monday.
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@jlhmom75 Congrats on being over a week post infusion 2 and on the upswing.
@sarahjunefox Hope you’re feeling better! {{{Hugs}}}} I buzzed my hair on Friday night; it was just getting too thin and patchy, and hair was everywhere. For me, that part was worse than finally buzzing it. I just don’t know how to “dress” my bald head yet, but I’m working on it. I hope you have a wonderful time in Disneyland!
@lyniepooh I hope your GI issues are better now! I have lingering issues to this day, post infusion 1, and infusion 2 is this coming Thursday. I’m relieved to cross off another chemo, but I’m dreading the fresh onslaught of side effects.
@fossf56 Good luck with round 1 on Monday! That’s the day I meet my radiologist for the first time.
@dw0330 I hope everything goes smoothly getting your port! And on your upcoming first round of chemo. The port itself caused me some discomfort. I’d worked it up to be so much worse going in. My big issue was an allergic reaction to the tape and adhesives afterward.
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@bailey.boo…..the digestive issues continue usually day 2 and 3 after treatment. Handfuls of hair now coming out :-(……the way I'm looking at it is…I will finally know what my real hair color is once it starts growing back cause I have no doubt it will all come out soon enough. Currently, after 4 treatments only real issues are diarrhea and the hair loss.
@ebfitzy …..I had a lumpectomy and 2 lymph node removals and having the port placed was more painful than those. But now at 1 month post port placement everything is good.
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@bailey.boo I ordered this baseball hat with hair attached - Its going to be my dog walking hat.
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I had my port placed on Wednesday and im worried it’s getting infected. It’s been almost a week and it’s still very sore, maybe more sore than it was. I was hoping it was from rubbing on my shirt, but now I was feeling around and have a swollen lymph node on my jawline on the same side as my port. Has anyone else experienced this? Perhaps it’s just reactive from the procedure…I hope. How long did it take before it stopped being so sore? Anyone who had an infection was it really obvious just by looking at it?
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Hi all! Hope you're all doing well. I have just said goodbye to some houseguests who were over for a week! The house is so quiet now. Terrible time to come but it was great to see my Dad (who is amazing) but not his girlfriend who is a total nightmare. Family are so amazing but soooooo hard sometimes. One more day of work now and I'm off to Disneyland Paris for the rest of the week! Wish me luck. I'm feeling totally fine now, no trace of the sinus infection and getting mentally prepped for my second dose on Monday after Disney.
That hat looks cool @fossf56 what is the quality like?
How is the buzz feeling @bailey.boo ? I feel like I'm days away from it now. Considering the pixie cut too @justsnapd8 but running out of time before my holiday.0 -
Been an interesting few days. I'm feeling okay right now (13 days post infusion 2). Biggest issue at the moment are my hands - fingernails hurt and the skin is peeling on all my fingers. Doesn't hurt, and doc said just to use Udder Cream and I cut my fingernails really short.
Other worry, is my son had a fever on Friday that on Saturday hit 106.4! With ice, meds, etc. we got it down, but ended up at the doc for him yesterday and he has mono and pneumonia. Now we wait and watch to see if I get it. Trying not to be too worried. Trying to get plenty of fluids, rest and exercise. Hope it will be enough.
@ebfitzy My port did not get infected, but it did take at least 3 weeks for the majority of the pain to subside. The bruises were incredible! I'm about 5 weeks post placement and the incision is still healing slowly.
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I’m all gray bristles in the front and sides, but still pretty dark in the back. I’m curious what will grow in next too. I’m sure there are far easier ways to find out, but here we are.
I’m glad most of your side effects are minimal. I’m finally no longer on Imodium, just in time for the next round, in like 36 hours!
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How is your port doing today? I hope it’s minor and now healing. I had issues, but mine was an allergic reaction to the adhesives and bandaging, but I was worried it was the stitches, since I’m allergic to vicryl stitches, and all they had other than that was moncryl, that seemed to sound suspiciously similar to me! The radiologist this week was joking I’d make a great topic for a paper. Something along the lines of “‘What Are You Allergic To? Yes,’ a Case Study.”
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@bailey.boo, we have someone in the Thursday Zoom meet-up that experienced that recently. I just checked the prevalence out of curiosity and apparently:
"In conclusion, ACD, while uncommon, occurs in 2–3% of patients who used 2-octyl cyanoacrylate or n-butyl cyanoacrylate topical skin adhesives. ACD is difficult to predict due to the absence of risk factors, but clinicians and patients should be aware of these facts before using topical skin adhesives."0 -
I’m glad you had a nice visit with your dad, and it sounds like a vacation is a nice follow up to the girlfriend drama. I hope you have a wonderful time!
The buzz isn’t too bad in this Florida heat and humidity. I drove home from the store today bald with sunglasses on in my tinted window car, and it was an instant way to cool off! I threw the scarf on as I exited the car.0 -
I hope you feel better soon! You’ve reminded me to put my bootie and mitt ice packs in the freezer. Have you tried those yet?
I hope you don’t catch any of what your son has!0 -
Hi everyone. I was reading through this thread and I think I found my group. Specifically the cancer treatments with port and the 4 medicines and the HER2+ cancer. So I hope you can answer some of my questions.
What is the use for those gloves/socks packed in ice I am reading? Should I have one for myself? I am having my port placed on 6/11. I read a post here somewhere that she was concerned a surgeon will not place her port but someone from IR meaning a radiologist. And I think mine will also be a radiologist. I was told to go to CVIR - whatever that means.
I also was ordered an echo test and a PET scan. I cancelled my PET scan for now because it was scheduled for 6/19 and I am supposed to start my chemo on 6/18. But I rescheduled my echo test for 6/10 which happens to be my birthday so what a birthday treat to me.
Am I supposed to have the echo test before my chemo? No matter, I already scheduled what I can.
Thanks. And I sure can learn from all your experiences. Not looking forward with the side effects I'll tell you all that much.
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did anyone have any sort of lymph node swelling in the jawline after port placement? Paranoid because I have this hard non-painful lump right at the upper part of my jaw where the jaw meets the ear sort of. I’m hoping it’s just lymph swelling since it’s on the same side as my port placement.
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I got a clogged salivary duct the first round of chemo, almost immediately. I’ve always had problem with lymph node swelling and clogged salivary ducts, probably having to do with my thyroid issues.
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@bailey.boo thanks for the response. I haven't started chemo yet. My first day is on Tuesday! We are enjoying some beach time this week and just stresses me out to have found a new lump. I'm hoping its just some lymph node swelling and nothing more.
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@ebfitzy I've had that blocked salivary gland before in the exact place you described. I wear dentures and I ate grits. Apparently, the grits plugged that opening at the back of my mouth. I rinsed well, and by the next day it had drained. I start chemo on the 11th as well.
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@pneuma Did they say what type of echo? I had a baseline, cardiac echo, but I already have cardiac issues. So not sure if they need a baseline for you or not. But they probably need a baseline because the chemo can cause damage to the heart so they need to be able to see the difference later on. A general surgeon placed my port. Call your oncology nurse and discuss your appointment timing. They may know the importance of which ones you need to have and which ones can wait. and the ice is to help protect your nails I think. Or possibly it could be for neuropathy. I'm not sure how effective it is. I don't know a lot about it. Happy birthday btw, albeit a little early.
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@justsnapd8 thats very interesting! Maybe that’s all it is. Thank you for letting me know! It’s easy to make your mind start wandering..
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