Starting chemo February 2020
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Dysonsphere and the other brave people facing surgery - you have already beaten chemo, so surgery won't even compare. My healing started with my lumpectomy and lymph node removal. That is the least surgery anyone could hope for. Honestly, it was nothing compared to chemotherapy and my radiation burns (not everyone has the same issue with radiation) . Best Wishes to you all.
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Sweettalker52, thank you. I'm hoping to skip Radiation. My fingers are crossed.
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I've been thinking more and more about getting some therapy too. I cry so easily and I've been plagued by thoughts about recurrence and someday finding that it has gone metastatic, not getting to see my kids grow up, etc. etc. I've started to think of things to do leading up to what I now imagine is my inevitable early demise. I'm sure this is normal and typical, but part of it is that I haven't gotten an actual "stage" for my cancer yet and I know that a 5cm+ "area of enhancement" on my MRI (not a tumor - I need to grill them about what it actually is and is not) in addition to two smaller tumors is likely to place me in Stage 3, which is way too close to Stage 4 for my liking. All I can hope for are clean nodes - and based on amount of cancer in my breast, that seems unlikely. I started out thinking I caught this early, but now I'm not so sure.
I'm also conflicted because I wish every day that I'm dealing with this (recovering from chemo, waiting for surgery) would just go by as fast as possible - I look forward to 10pm when I can go to bed and mark another day done. But then I feel guilty for not wanting to slow life down and spend quality time with my kids (see "inevitable early demise" above
)This sucks. I feel like I could have handled this so much better emotionally if not for being locked down by COVID.
Enough of that... maybe I had too much time with my own thoughts when my husband and kids were gone last week.
Surgery.... I sleep on my stomach normally. Has anyone looked into special pillows for helping you sleep on your back? Also... what cup size should I get the zip front bra? PS plans to fill the expanders with some saline/air right at placement time.
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micdpowers, hugs. I totally hear you. I wanted to quit chemo and go straight to surgery. And I kept telling my fiance that I know my time here on earth is now on a timer. I feel like I have to go through all my bucket list items as soon as possible.
I think it is normal to feel that way, death knocked on our doors.
I don't care about stage anymore like in the beginning. At first they told me Stage 3 or 4, now, it really doesnt matter.
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I sleep on my side so it will be very hard to sleep for a while. I bought a bed wedge and another one for under my knees. I wish I had space in my house for a recliner. That's what I used after my tummy tuck and it was awesome.
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So I just had my appt. w/ my breast surgeon. They will be sched. an appt. soon to put in a "radar" on the lymph node that had cancer. Then the hospital will be calling me to sched. a Covid-19 test which I'm not okay with at all. Also, on surgery day I have to be in the hospital at 9 a.m. even though surgery is not until 1 p.m. because they need to inject something through my breast to the lymph node. I'm not looking forward to that either. This sucks.
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Hello all! I seek advice about your experience with Taxol after AC. I just finished AC last week, set to start Taxol weekly x 12 weeks on 7/9. I had AC every 2 weeks x 4 rounds. My main SEs (fatigue, queasiness/heartburn, nothing tasting good) would last about a week and then I would feel better the 2nd week before the next treatment. I'm wondering how your side effects cycled with weekly Taxol. I know everyone is different, but curious about your experience. Did you have specific days each week that were worse or was it just constant since the Taxol is weekly? I hated how my taste would be off for a week--ugh, nothing tasted good. Did Taxol affect your taste? Also, the way my FMLA (exhausted) and personal leave of absence (PLOA--can only be continuous/intermittent is not an option) have turned out, I will have to exhaust my PLOA and be off work until early September but then I will have to return to work when I still need at least 3 cycles (at best, assuming I don't have any delays). I know chemo is cumulative. I'm really worried about how I'm going to be able to work around 3+ cycles of the Taxol chemo. I normally work in patient care in a hospital setting. Luckily, I am only part-time, so I only have to work 18-20 hrs/week and could do short days.
Would anyone mind sharing their experience with their Taxol side effects and/or how you got through working while on weekly Taxol if you were working? Thank you so much!!
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Ilovethemoon, Taxol was a walk in the park for me. All the side effects were still the same but way less. My weaker days were days 2 and 3 after it.
Working was hard for me but I was working from home. I don't know if that makes a difference.
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@Sweettalker - you're absolutely right. I wasn't happy with my pathology results (not getting a pCR) and what that might lead to (treatment wise) but, when I stop and think I realize the worst is over. Nothing can be as bad as TCHP (full on chemo).
I'm already over the operation hump (which was a breeze - for me). The path ahead is long but, it's definitely a gentle downhill path, I already climbed the mountain.
"Surgery.... I sleep on my stomach normally. Has anyone looked into special pillows for helping you sleep on your back? "
I have a wedge pillow, it's OK. I'm a side sleeper and while I can sleep on my back I don't really want to. I'm just counting down the days until I can sleep on my side (3 more weeks)
"Also... what cup size should I get the zip front bra? PS plans to fill the expanders with some saline/air right at placement time."
It might be easier to wait and see what size the PS gives you post surgery and then just order a couple from Amazon. You can even ask your PS to give you 2 to carry you over until your new bras get there.
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"Then the hospital will be calling me to sched. a Covid-19 test which I'm not okay with at all."
My mom went twice once they swapped her throat the other time they swabbed her nose. She said both were fine. When I went they swabbed the throat, it was literally nothing
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morrigan_2575, I'm not okay with the testing for Covid-19 but I would accept the throat one, not the nose one. So I have to wait for their call to see which one they do and see what option I can fight for if they only do the nose one.
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Morrigan- I love “The path ahead is long but, it's definitely a gentle downhill path, I already climbed the mountain.“ that’s such a good way of looking at things. I needed that this week. I’ve just felt down and I don’t really have a great reason...radiation is generally “easy” but I’m in a “I’m tired of this cancer shit and everything I have to do for it” mood. I’m glad your still healing well. I was so relieved once I could sleep on my side again...the wedge pillow didn’t do much for me and I hate sleeping on my back.
Micdpowers- I relate so much to what you posted. Wanting it to be 10pm for bed just to check another day done and the guilt of feeling like I should be soaking in the moments and quality time with my kids. Therapy has helped a lot, but I don’t love teletherapy, which is the standard for now.
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I can relate to everyone about being emotional and sick and tired of being sick and tired. Each week on Taxol it is taking longer to recover my energy and I haven't yet this time. Tomorrow is dexamethasone and fill bags with ice for the last time; infusion early Thursday morning. The steroids tend to make me short tempered and grumpy, not weepy. Could be the lack of sleep too.
Glad to hear it will get better dysonsphere! Especially the GI stuff. So tired of uncontrollable gas. Glad I am working from home
!! ScatteredEnergy and morrigan_25 - Thanks for the supplement tips. My oncologist has banned supplements while on Chemo, but hoping to start using again soon. I do think they help.
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Txmom3- ugh I dreaded the start of dexamethasone. It made me restless and crabby...and meant that a chemo round was starting up again (maybe that’s why I was crabby when on it haha).
I’m currently on day 13 of 33 for radiation. So far it continues to be a breeze compared to chemo, but I know I probably have some side effects coming (mostly skin irritation) since they tend to be cumulative. I’m just sick of driving to the clinic daily. I haven’t had many noticeable side effects from my HP infusion...not even much of the dread diarrhea from perjeta so far. I have my 2nd HP infusion next week. I’m just trying to focus on enjoying the nice, long weekend. We’re camping up on the north shore (my favorite place). It’s something we booked back in January as something to look forward to at the start of this whole cancer mess and then covid *almost* ruined it, but luckily campgrounds are open (with rules/restrictions in place). I’m just happy to be able to do something that makes me feel semi-“normal”.
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what's booster radiation? Booster days?
Do you get radiation on your HP day?
LOL my signature is getting so big...
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The radiation "boosters" were explained by my radiation oncologist like this:
The first 25 treatments target the breast, the incision where the lymph nodes were removed, and some remaining lymph nodes on that side. The 5 "boosters" at the end target only the lumpectomy surgery site, no lymph nodes.
Best Wishes!
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Thanks Sweetalker! I just saw that term "booster" in a Facebook group. I didn't know there was any difference in radiation techniques
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Morrigan- I won’t get any boosters, but I get what they call a bolus every other day. They put a damp towel over the side I’m getting radiated when they do the whole breast. It was explained to me that this changes the depth of the radiation to keep it targeted more at the skin and mastectomy scar. I’m still learning all of the terminology that goes with radiation. I feel like I don’t get as much time to spend with the radiation techs because radiation is generally quick and they aren’t in the room the whole time it’s given. Compare that to chemo when I’d spend time visiting with the nurses off/on for hours and could ask any question that would pop into my head. I do get radiation on my HP days still. I just wish they’d coordinate the schedule a little better so I didn’t have such a gap between treatments (HP 8 am start and Rads at 2:30 daily). Also, my signature is getting quite lengthy too..and I have yet to add on hormone treatment!
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So, I'm starting to get scared lol. I have my appt. for the Radar Localization next week, I have my prescription for antibiotics and Vicodin, and soon I'll have my appt for the stupid Covid-19 test. Surgery day is fast approaching.
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Just had an idea since I'm dreading the every day 90 minute round-trip drive for radiation: books on tape. If I find a good one, I could look forward to that.
Also, I've made my first post-diagnosis life-changing decision: Wear nice underwear. I've always worn ugly basic, uninspired and uninspiring Hanes underwear briefs. I don't think I'll be switching to thongs... but I threw all those ragged briefs out and have decided to be better about wearing nice underwear every day.
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micdpowers, I have always loved cute, nice, and sexy underwear even if no one sees them. I used to use thongs years ago. I no longer do. I'm tired of them. I'm getting old lol
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Scattered- understandable to be scared. I was terrified when I went in for my BMX. It was my first surgery ever. Hopefully everything goes smoothly and you have a nice, easy recovery.
Mcdpowers- I only have a 15 minute round trip...I shouldn’t complain!! I just hate going everyday, but it could be worse. Books on tape is a good idea for your drive. Someone else also suggested I get myself a treat of some sort to or from every round, but I’m afraid that’ll help me pack on too many lbs haha. I love your underwear idea! Hah
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"Wear nice underwear."
I went the opposite way, I used to be all about pretty/cute/sexy underwear (thongs, bikinis...no briefs). Now I'm all about comfy but, they can still be cute 😍
I plan to update my wardrobe. I'm going to clean out my closet of clothes, shoes, and especially dresses. Make room for new clothes and especially pretty, pretty shoes 😊
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My chemo nails. I went to the salon today to take off the nail polish. All the parts that are dark white or black are hollow. It is so weird to see the nail just in the air lol. An also weird to see the white line which I'm assuming it was the last time chemo reached it.
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Had my 2 week post op with the BS. They're going to present my case to the Tumor board to determine if I need radiation. They will have an answer by 7/14. I'm going to setup a consultation with a Radiation Oncologist for that week just to be safe.
I'll also discuss it with my MO on Monday when I start Kadcyla. I expected/accepted that I would need radiation so now I'm thrown for a loop that I might not. I will take some time to think about it but, I almost want to fight for it just to be safe.
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morrigan_2575, I'm fighting for not getting it, you are fighting to get it lol
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LOL 😂
I don't really want it, I'd rather just do that Kadcyla but, I also don't want a recurrence and, to look back and, think I could/should have done more.
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I hear you lol
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I did it!!! I rang the bell yesterday!!!! Txmom3 was supposed to also! Happy day! I can’t get my video to upload so I can share it
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Congrats Hray!!! And Txmom3!!!
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