Starting Chemo September 2019
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Thanks LMS458412 for your info on shampoo products for the scalp. Much appreciated it. 🤗.
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Gamb - I think no matter what treatments are available to us, there's still that underlying fear. We can just do our best!
Linda - Congrats on being done with TC!
Ange - I'm sure we've all been scared shitless many times on this journey. I had surgery before chemo, a double MX with no reconstruction, and frankly it was much easier than chemo!! You are going to be okay. Hugs.
I'm totally on board with a tropical vacation with you all!!! I don't play the lottery very often, but I will buy a ticket the next time I'm at the store. If one of us wins, let's party!!!!!
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LMS any suggestion on items needed for after surgery.
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Maggie you might need to have everything you need with in reach, you wont be able to lift arms very high at first or until dr tells you you can. You might need someone to help milk the drains so they won t clog up. Baby wipes to wash yourself with, they were a big help for me.
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Maggie also a button or zipper closure for shirts, you might not be able to do pull over. Shirts should be loose and comfortable
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Maggie007,
Thinking about you tomorrow - last one!!! Very sorry to hear about those SEs giving you an aweful time. Stay strong! Chemo is almost a thing of the past...
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I wasn't really afraid of my mastectomy surgery until the week of. Im really dreading the hysterectomy for some reason.
I'm game for the tropical island!
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Linda - Agree with Gamb. Make sure things you use daily are within reach. I had to move some things lower in the kitchen and in my closet. As far as stuff, this is what I used most:
Baby wipes - for cleaning while you're not allowed to shower.
Comfortable, easy-on-and-off clothing - pull on pants, front buttoning/zippered shirts, soft socks.
Drain holder or safety pins - I had 3 drains and ended up buying a drain holder (two pouches on a belt) from Etsy. You can also use fanny packs or even just pin them to your clothing with safety pins. I didn't want to mess with pins. The drain holder worked very well for me. If you want to use mine, I'd be glad to send it to you.
Pillow for car rides/sleeping - I bought a special mastectomy pillow from Etsy (pinkpepperco). It's awesome. You'll want a pillow or blanket between you and the seat belt in the car. And, while sleeping, it was comforting to have the pillow against me.
Some sort of compression - talk to your surgeon about this. They will send you home with some sort of compression on. Some get surgical bras. I just got a wrap (like an Ace bandage around). I bought a front closing sports bra to use, but hated it, so then I just got more Ace bandages and used those for awhile. It was nice to swap out daily and wash them. But, again, talk to your surgeon about what they want you to do.
OTC pain meds - my doctor wanted me to use Tylenol. I didn't need anything stronger. I only took the strong stuff right after I came out of anesthesia and was hurting really bad, but by the evening in the hospital (I stayed overnight), I was just on Tylenol and nothing else. It's different for everyone, of course, but that was my experience.
Lotion - once you heal a bit and get your drains out, you'll need to use lotion on and around your scars. Talk to your surgeon about what they want you to use.
Hope that helps you, Linda, and anyone else getting surgery in the near future. Hit up the surgery boards for more info - they were super helpful for me!
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Happy new year, ladies!
Somewhat anticlimactically, after some back and forth with my MO, I'm apparently done with chemo.
The neuropathy in my hands and feet has continued to the point that the MO wanted to discontinue the Taxol. She offered an alternative clinical trial chemo, but given the general success of my mastectomy and low-ish risks overall, we agreed to just stop. So my last chemo was Dec 23rd.
It feels weird to not be thinking about the next infusion. I haven't quite caught up to the being done with chemo part of things. I'm hoping the reconstruction can be moved up as a result of finishing chemo early, but haven't heard back yet on whether that's an option.
Meanwhile, I'm waiting to see if the neuropathy goes away. My hands and feet are just freezing all the time and not being able to feel my fingertips in particular is starting to cause coordination issues. Hopefully it'll get better!
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AC - sorry about the neuropathy!! I hope it reverse itself. I bet they will be able to get your reconstruction moved up once time has passed to get your immune system built up after last treatment. Doesn’t it feel good to know you don’t have to do that nasty chemo anymore?!?
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Congrats Ac for finishing chemo!!!!
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Congratulations AC on finishing chemo! I'm just sorry of the circumstances. I hope your neuropathy goes away, or at least improves significantly!!
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AC I’m practically in the same boat as you. Neuropathy in hands and feet not good even though I iced. We reduced the dose for remaining treatments starting this week with #10. But MO already brought up skipping #12. And I think that’s how it will go. My axillary lymph node where the cancer was detected has shrunk significantly. I plan on having a double mastectomy with lymph node removal. So hopefully I won’t miss the last Taxol.
Best of luck to you.
Marilyn
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Hey all saw my mo today got my survivorship plan, I will see her every 3 months for 2 years for exam and blood work, if I feel anything is wrong I am to call them anytime for appointment and she said scans would be done if symptoms warrant it, she went into a huge explanation why scans are not part of the deal and what she said made sense to me. After 2 years then I will see her every 6 months for 2 years,then once a year then released to primary Dr, since I have Chek2 mutation she wants me to have colonoscopy, i am not to keen on doing, but I will some time this year. She said if this cancer returns then it is no longer curable but treatable.
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Also will go in detail,over diet when I see her p.a.
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Friday update: 7 weeks PFC
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ACChaos - Congratulations on finishing Chemo! I hope recovery is swift and smooth. I'm 9 weeks out from TC and still dealing with mild neuropathy. I have found that B Complex vitamins and magnesium has helped, but not eliminated it.
Snaffle - glad you're coming to the end, I hope the remaining treatments go well.
Gamb - I hope your MO was clear that if the cancer returns, where it returns is the determining factor as to whether it can be treated with curable intent or not curable. If it's a local recurrence, they still treat with curable intent. It's only distant metastasis (organs or other parts of the body) that are incurable. My tumor is considered a new tumor, not a recurrence. But my MO said even if it was a local recurrence, it would be treatable with curable intent, I'm considered stage 2A.
Hugs to all of us
Tracy
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Snaffle/Marilyn - I iced, too, really aggressively during the infusions, and was pretty disappointed to get neuropathy anyway. I've been doing the reverse at home - super hot foot/hand soaks at night before bed, which has kind of helped. In the very least it gets my extremities warm, which has been a problem. I'm always cold these days.
I'm mostly disappointed now because I spoke with the scheduling team and my PS is going out on maternity leave and so my reconstruction will be delayed a few months unless there is a cancellation in February, which is unlikely. We had discussed doing the surgery in March, but she's apparently decided that the longer procedures aren't a good idea being as pregnant as she is. And while I can't really debate that, since I agree, it still sucks. The expanders are my most hated part of this process and now they'll be in for another few months.
Which then delays my hysterectomy/oopherctomy because they won't do that until after the reconstruction because there's a risk of hitting vessels which would then eliminate flap reconstruction as an option entirely.
GAH. I just want this to be done. Wrapped up neatly in a package. Sigh. Tantrum over.
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Bridget I love the hair!!!
AC - Ugh! Sorry that you have to wait for the expanders to be replaced. How frustrating that must be especially since you’ve not had easy times with the chemo. I hope they can get you back sooner than March
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AC - Sorry to hear about the frustrating timeline.
Here's hoping for a cancellation in February! I go for my hysterectomy/oophorectomy on the 20th. I'm totally not looking forward to it. I have some reconstructive work planned for around March. 0 -
Here's my hair growth 9 weeks PFC:
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Week 9 PFC hair growth
Top
Side
Back
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ACChaos
I’m sorry for your surgery delays, I agree with your feelings on the Tissue Expanders....they suck.
Hugs
Tracy
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Seriously thinking I may have had my last Taxol treatment at #10. The neuropathy in my feet is to the point of pain all the time. My hands aren’t too far behind. This terrifies me. And the fatigue is so bad now I don’t think I can manage a shower even if I sat the whole time. There is still drying off and getting dressed that needs doing.
I feel like I have just hit a wall this week. I went in for fluids on Friday. Can’t say they helped. My energy so low. I get labs done and get fluids on Tuesday. Chemo and MO appointment on Wednesday. But I think I’ve just hit the end. I hope my MO agrees that my cancer has responded well enough to the chemo that’s done.
Marilyn
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Marilyn
I hope your MO agrees with you. At some point, it doesn’t seem worth continuing when the SEs are that bad.
Hugs
Tracy
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Hi Brilee76 (Bridget) I have a question for you: was your hair white/grey before chemo? I’m from the December thread but I’m following you girls closely to encourage myself 😊.
I’m doing chemo 2nd Round TC. I started losing hair right before second round and I shaved it less than an inch. I can’t say that all my hair has fallen but I guess it’s gradual. Has anyone witnessed that as well?
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Eigna
It can be gradual, and some ladies never loose all of their hair. It’s possible you’ll have some hang on.
Tracy
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Oh yeah? I hope the chemo is doing it’s job though. Thanks for replying.
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Studies and doctors are pretty adamant that effectiveness of chemo isn't tied to what side effects you have or the severity of side effects. I try to keep that in mind as chemo, while nownear easy, wasn't as bad as I expected. I think each of us react differently.
Hugs
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Eigna,
Not Brilee, I finished TC 11/13. My hair was brown before chemo with a tiny bit of gray. The hair that is growing in is 100% gray. I cold capped the entire time. It didn't work out too well for me, but the little hair I have left is brown (and all the rest is gray.) It looks pretty crazy, but I am relieved to see any hair growing back at all. Crazy or not, it’s hair.
Jodi0
