July 2020 chemo club
Comments
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Evergreenman and Trynryan congrats on your cPR!👏👏👏 What wonderful new to receive after the trials of chemo!!
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Trynryan, that’s fantastic news! I am excited for you! 👍🏻🥳🎊🎉 Wishing you all the best as you heal and recover.
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Shar - Thanks! I’m definitely looking forward to the end of chemo, and especially the 3 week break before meeting with radiation!
Evergreen & Trynryan - congrats on such good news!!
Melbo - How scary! I’m so glad you were able to get to the bottom of it and know what you’re dealing with.
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Melbo. That whole thing sounds terrifying! It can be so hard to have to be your own #1 champion for yourself within a medical system. Way to go for doing it and not backing down, speaking up for yourself and being assertive in all the ways that you were.
It obviously shouldn't be so hard to get the right medical attention, and it always stinks to feel like you are not the #1 priority for your doctor/nurse -- I have had this experience too.
I admire you for advocating for yourself. I think sharing stories about how much women end up having to fight to be heard in busy, complicated, overstressed medical settings can give us all more confidence the next time we need to speak up to get the quality of care and attention we deserve.
Sharon
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Now that most of us are done with chemo curious to know how everyone is doing with the residual effects. Is your hair coming back? Neuropathy lessening? I have notice not much for hair growth 6 weeks post chemo. Fingers and toes still tingling and cold feeling. I can taste food like before and can drink my water and be satisfied. I worry about the hair because of taxotere but will try to be patient. From what I have seen hopefully 4-6 months out I might be able to ditch the wig and caps. Please share how you're recovering. 🤗
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iamloved — I am only three weeks out from my last chemo, but I have already noticed several improvements - most noticeably food and water taste okay again. I have some scraggly looking hair trying to grow in, but it’s very short and extremely patchy at this point. My nails have gotten progressively worse though and now all of my fingernails and most of my toenails have red spots under the nail and ridges on top. Hopefully I don’t lose any of them.
I am going to have my port removed tomorrow. Apparently it was too risky to leave itin place since I have to stop taking blood thinners two days before my surgery. I’ll get to use it one more time for herceptin and Perjeta infusions tomorrow morning and then I’m walking to the surgeon’s office to have it taken out.
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I will add my pCR to our growing list! Cheers, all! Only a 3mm area of DCIS remaining at the original tumor site, which qualifies as pCR and has the same recurrence rate as any other pCR, so I’m thrilled. Went over pathology report with BS yesterday and will meet with MO tomorrow, I suppose just to confirm that I’ll stay on HP through twelve months. I have a consult with radiology on 12/23 and will probably start radiation in January and hormone therapy after that.
Melbo, I am so sorry for what you’ve had added to your plate and relieved to know the port will come out so you don’t have to think about this scary thing again!
As for remaining side effects, my nails look like hell but don’t hurt anymore. One or two of them I think might lift as they grow out but I don’t think I’ll lose them. I still have hypersalivation, which is annoying and gross, and an occasional eye twitch and ringing in my ear, but those are decreasing. I can feel I’m still anemic—leg muscles are sore and I’m just tired—but it feels like it’s getting better. I think I might be starting to grow new eyelashes bc I keep feeling little sharp pokes in the area I didn’t lose all my hair but it looks like I’m starting to get some new hair. I’m taking pics every month so I will be able to notice it thickening.
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AnnaTheBrave...Oh how wonderful for you!!! 👏👏👏👏👏I had a 1 mm dcis left too so glad to hear about the recurrence rate. I have my pathology report and will go over next week with my surgeon. My nails too are acting up but I don't think they will fall off.
Melbo...As far as hair, I never shaved mine bald so I have some stragglers that continue to grow. Looks pretty fuzzy and sparse but praying in a few weeks I see progress.
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Iamloved and AnnaTheBrave, I am excited to read about your pCR! That’s fantastic! 🥳🎊🎉👍🏻
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Great news ladies!
My dad was just asking me yesterday how the doctors can tell if the chemo is working for me. I had to explain to him that since I had my surgery prior to chemo, we're really just hoping to kill any remaining cancer cells hanging out there. No real measurable way to tell which is so weird. I'm so happy for you ladies that are able to see the impact chemo has had on your tumors!
My last infusion is Monday 12/14. So far I've been able to avoid any real neuropathy and main side effect has been fatigue. The fatigue seems to have gotten worse lately. My nails have also become sore over the last few days. Sounds like I'm not alone. Really hoping not to lose them!
I've been more emotional than I normally would be. I feel rather short-tempered and overwhelmed - not like me at all. Hoping to get out of this funk soon!
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Port came out with no problems today. The procedure was done in a regular exam room and was mostly painless. It did feel a little strange as he was tugging and pulling to get everything loose, but completely painless. Now my chest is a little sore, but even that is mild compared to the pain I was in from the blood clot itself
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Melbo, I am glad to read the port has been removed and I hope the area heals quickly. That sounds like a frightening experience.
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Brittonkb, sorry to read you are feeling fatigued, overwhelmed, short-tempered and emotional. It looks as if you received your diagnosis more than seven months ago so that can take a toll on the body-mentally, spiritually and physically. It's a lot to experience. Be kind to yourself. I will be cheering for you here on Monday when you have your last infusion!
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So jealous of all of your pCRs! And early surgery dates. My tumor has shrunk by about 50% - so not great in my mind. But my breast surgeon says that it's A+ and is still planning for a lumpectomy with rads in early January. I'm now thinking I should push for a double mx. Anyone else have to make the decision between a lumpectomy and mastectomy?
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Susiemommy...I could have gone with a mastectomy but they still would have wanted to do radiation. So I opted for the lumpectomy with the breast reduction. If I get a recurrence I can get the mastectomy then. Probably a negative way to think but decided to do the least damage. Now 10 days out from surgery and no issues and very little discomfort. Tough choice though.
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Susie, wishing you a great outcome with your surgery and radiation in January.
I had a 50% reduction in tumor size, too, and I was disappointed it wasn't more but the surgeon said the breast MRI showed decreased enhancement so the size alone isn't an indication of pCR. We will know after surgery. (I am excited about everyone’s pCRs!)
I wondered, too, about mastectomy vs. lumpectomy. Recurrence rates and survival rates are almost the same for lumpectomy and radiation or mastectomy. I wanted a mastectomy to avoid radiation, but the surgeon said not to make the decision based on that because many women still need radiation after a mastectomy. He's not recommending a mastectomy.
Whatever you decide, wishing you the best possible outcome with a quick recovery!
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I am getting a lumpectomy and bilateral reconstructive/reduction on 21 December. I wanted to go with the least invasive option first and like Iamloved I figured I could get a mastectomy later if the cancer came back. All of my doctors have also told me that recurrence rates for my cancer are virtually the same for lumpectomy and radiation or mastectomy.
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hi ladies!
So great to hear everyone’s PCR! susiemommie and shar20-will both of you move to the Kadcyla medication?
I had my bilateral mastectomy with immediate reconstruction on 12/1. I am doing and feeling great. I was off pain medication after 2 days and moving around good. I received my pathology report and was almost a PCR. I had 1mm left of IDC and .3 lett if DCIS. I started off with 1.8 of IDC and 7x4 cm of DCIS. My MO is recommending the continued plan and not to move to Kadcyla. I was a mess hearing this news in the office since I had a small residual but it seems like it’s good news. She did offer the Kadcyla if I want to be overly aggressive with treatment. I will think about it.
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Nottoday, I do not know whether or not I will be having Kadcyla.
I am glad that you are feeling great since your mastectomy. That sounds like a tough decision to make, regarding the Kadcyla. I thought the measurements in your post counted as a pCR, but I do not know much about it. I hope your MO had useful information to help with your decision. Wishing you the best as you continue to heal and recover.
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I posted this on the triple positive board but I’ll add over here too. As I mentioned here, I had 3mm of DCIS remaining, and DCIS is considered a pCR but my onco is stil considering Kadcyla for me—she wants to talk to a friend who’s a BC researcher to get a second opinion—but she said that her consideration was due to my relatively young age. The more I think about it, the more I’d prefer to switch to Kadcyla but I’m not sure if it can be justified to insurance.
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AnnaTheBrave, if your oncologist recommends Kadcyla, I hope it all works out well for you and the insurance company covers it. That would be great!
Brittonkb, I don't know whether or not I will get here to the site on Monday so all the best to you with your last infusion tomorrow! I am ringing an early bell for you! 🔔🎊🎉🥳🙏🏼
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Thanks Shar! I'm definitely excited for this phase to be over with!
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Officially done with Chemo!!! Ding Ding Ding
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Woohoo!!! Congrats BrittonKB
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that’s awesome!!! It’s such a good feeling. I hope your side effects for this cycles are minimal
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brittonkb...🔔🔔🔔🔔🔔Congratulations!
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So I met with my plastic surgeon's office and my breast surgeon's office at Mayo. Cancer FREE! Complete pathological response. The 1% activity in my report was from the dcsi cells that were in the tumor bed. I meet with oncology later today for further instructions like continuing Herceptin but could not get a better Christmas gift! ❤
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congrats! That’s awesome news.
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Such GREAT news!! So happy for you!
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Such great news for everyone!!!
I’m getting ready to have surgery Friday. I live 2 hours away, so we are traveling tomorrow...I won’t get my surgery time until sometime tomorrow, I’m scheduled at 2:00, with the blue injections at 9am Friday, but that could all change.
I’m ready to get this over with, the sooner I get that pathology report, the sooner I can move onto the next step!
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