Calling all TNs
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Glad to hear that Pinkone.
Dang Rhonda, time to catch a break.
I continue to do well on A C . Tired, dehydrated, but good.
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Wonderful @pinkone501, thanks for sharing the good news .
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Hi everyone. I hope your all doing well and enjoying winter wherever you are. We have yet to have a decent snowfall. Rare for us.
I thought an update was due. I'd like to hear from you more often so I hope your not writing means your doing really well.
Day after tomorrow I get infusion 3 of 4 of AC. 2nd dose hit a bit harder but still mostly tired. Intestinal pain difficult to relieve and interrupting sleep alot. None of the snotty nose of Taxol. Taste buds normal. Bowels like on Taxol. Still grateful it could be worse but concerned about accumulating effects with last 2 infusions. Even Dr said it gets harder.
Other concerns are that Dh just came down with a cold or something. Lots of coughing really. I hope not to get.
Also I have 2 more spots on my face. Both different again. Last April I had 2 removed. 1 was precancerous and shaved off. The other froze with nitrogen. But precancerous like what kind. Biopsy was negative. One now looks the same so I imagine it will be shaved as well. Precancerous for squamous cell skin cancer or breast cancer and which one. Perhaps it wouldn't develop into that till later. And the chemo I've been on not stopping it? What's that about? Not cancer yet I guess. Will wait for referral to make appointment as I can get in quicker with skin dr that way. Meanwhile on good days I'm still quilting.
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@gailmary it's good to hear from you! Sorry about the spots on your face I know they're worrisome, but hoping they just shave or freeze them away. The only good thing about the AC is that there's only four cycles! You're going on number three so you're almost done. I don't journal so I don't have the daily in and out of it but I know I was really tired. in other news, I finally made it back to my house. I have been staying with my sister and her husband since June where she was able to make sure I had something decent to eat, and make sure I stayed hydrated. I have a PET scan scheduled next week, my first one. Depending on the results I'll start on Xeloda. One day at a time!
Have a great day everyone! ☀️
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@justsnapd8 that was so kind of your sister. My sister would do that too but dh is here. I bet your glad to be home. I like to think the scans are just routine so they are not worrisome. Ha!
Can you explain the difference between simple and radical mastectomy? I see you had both. Still recovering?
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Hello everyone. I have been reading your posts this last year, but haven’t commented until now. I was diagnosed with TNBC last Feb. 14, 2024 and I went through AC (toughest part), then 3 months of Taxol. Had a lumpectomy, followed by radiation. I am finally getting my strength back. Dealing with some lymphedema. I have my first follow up mammogram next week. I see that a lot of you are on other meds as part of your treatment (like Keytruda). Is that only added when you have recurrence? My doctors have not recommended any other meds. The doctors said my treatment was successful ( for now). I know it may well return. This is my second cancer (I had surgery for colon cancer in 2020).
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Hey Ladies, hope everyone is doing ok, cold and rainy here in Arkansas, which I like the cold so I am good lol
Went to my oncology check up today, all good and will have scans in May, don't know why but those things make me so nervous every time I have them, but they doooo
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@gailmary yes, I was very grateful to my sister and her husband as well. Living alone, it wasn't a good idea for me to stay here but I'm glad to be home. The modified radical mastectomy is the breast and the lymph nodes around the breast and under the arm. The simple mastectomy is just the breast. It was a personal choice for me to have them both removed.
@lannie28 Welcome! I'm so sorry you have to go through cancer treatment again. Different oncologists will use different treatment methods. I was diagnosed in May 2024 and started chemo in June. My chemo regimen was Keynote 522, based on a clinical study done by the makers of Keytruda, Merck. My cancer center is affiliated with MD Anderson and that's their protocol for TNBC. The first half was Taxol, carboplatin and Keytruda. and the second half was AC and Keytruda. Now that I'm done with that initial chemo and have had surgery, I've started Keytruda again which was the plan all along. mM pathology report showed a tiny spot of cancer in 6 of 8 lymph nodes that they retrieved, so I will be starting on a chemo pill, Xeloda, soon.0 -
@pinkone501 I'm glad your appointment went well. I get it about being nervous with the scans. My first PET scan will be next week and I'm definitely concerned about the results.
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Hi everyone, so nice to read your updates.
@justsnapd8 in your pockets for support on your PET scan next week. Hope you continue to heal from the surgery and you are not uncomfortable. So glad to read you are home now. It must feel great to be in your own home after 8 months. It’s hard to go through the treatments on your own. Xeloda has done an amazing job for many gals, with minimal side effects. I hope it’s an easy transition onto it , and it works for you to keep the cancer from recurring.
@gailmary glad you are doing well and have just 2 left. I remember being so relieved when I was down to the last two. Is there a maintenance plan for no recurrence or will you be done ? Spots on the face are always a pain to deal with. Glad the biopsy was negative. I’ve had a few Mohs surgeries over the years for spots on my face when the biopsy was not negative, and others frozen off. I hope it’s no big deal for you. Keep quilting ! Love your designs.
@pinkone - yeah for a good visit and that all is well. Enjoy the cold , while it lasts lol… I’m ready for spring here on the east coast it’s been cold for 2 months and won’t really warm up till April. And yes, nerves around scans is normal, sometimes I get nervous just visiting the MO. I know it’s hard living with uncertainty, I feel like that is the big life lesson for me. As best as I can just accept and relax...@lannIe28 - welcome glad you posted. Sorry you had to go through another cancer journey. As @justsnapd8 says, different protocols are designed on an individual basis these days. I’m sure your treatment plan was designed for your particular molecular makeup tumor wise. I was on Keytruda and it didn’t work for me, but has for many gals. Glad you are getting your strength back! Treatments can take a lot out of you. I like exercises on YouTube to help with my stamina. Found a new one gals SeniorShape ! It’s fun. Good luck with your mammo next week, in your pockets for support.
I go for infusion #4 next week, and we’ll see what my MO says about the rash under my arm. Still there, might be cancer again might not..we’ll see . MSK sent a phlebotomist to my house on Friday for the blood draw for my liquid biopsy, was easy peasy. Day at a time indeed.
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Happy Valentine's Day, ladies! 🩷
@rlschaller thank you, I hope I can stay home. How convenient to have the phlebotomist come to you! I am blessed in that my cancer center is just a couple of miles down the road. I know many people have to travel great distances for treatment. Good luck with your infusion next week. Let us know how you are.
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@justsnapd8
I think it was wise having the lymph nodes removed. Mine are gone already from surgery in 2008. I'm hoping recovery will be easier.
I'm won't have so much anxiety with the next mri. They are ignoring the er+ cancer for now. Well what dr said in July is that the chemo will push that one back further in remission. There was already no evidence of active disease. The TNBC is more important. So I pray for a complete response.
As usual I am a bit dizzy starting day 3. I get nearly 90 oz. Of drink a day. I've had iv fluids once and once on taxol. No big deal.. BMs have been more normal this round. Yay.
I have 4 dr appointments this week. Sounds exhausting. I may need dd to drive. Dh is still out with RSV. So good so far for me.
We finally got snow. Good neighbor plowed us out. A blast of cold up next.
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@gailmary It's exhausting going to all those appointments, but it has to be done. I hope your dd is free to drive you, and maybe sit in for moral support and an extra set of ears! Hope your Dh gets to feeling better. Are you avoiding him?
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@justsnapd
Yes dd is available and very helpful with remembering medical Info. She is autistic and took phlebotomy classes. Such a memory. I drove myself yesterday. Zoom appt today. Hopefully alone tomorrow. By Thursday I'll be exhausted and she can drive me.
Dr upped my thyroid meds. . Numbers really tanked. Vitamin D too. But I missed almost half of daily dose of 5000 units. Maybe explains how I feel. I know my MO checked my thyroid 3 mos ago during Taxol. BUT he should have checked again apparently.
My surgery consult was moved up to March 10. Yippee. Mri is after that.
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@gailmary My thyroid did the same thing. The culprit is the C in AC, Cyclophosphamide. My PCP was nickel and diming it in increasing the dosage of levothyroxine from the initial 88mcg, but the number finally moved after she increased it to 137mcg. She wants the levels checked every 6 weeks, which my MO orders often. They haven't said anything about vitamin D, yet. I do take a lower dose D3, I think 50 mg. I don't know if those two are related. I'm glad your daughter is able to drive you. How's your husband feeling?
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Hello all! Just checking in to give some encouragement - and hoping not to jinx myself. 😊 Six years ago I was two months past lumpectomy and between my second and third chemo (out of four) looking ahead to weeks of radiation. Today I'm just sitting at my desk in the office eating a leftover taco salad like nothing ever happened. I saw my MO yesterday who said I'll only need to see her annually now since I've become so boring. Same with my BS after I see her in a few weeks. So don't let the dark days keep you down. There is light at the end of the tunnel - and beyond!
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@piperkay congratulations on being boring and moving to annual checkins! So appreciate your taking the time to share and Encourage us. It’s very nice and helpful. Thank you for the hopefulness and so glad to read of your complete response success over time. You go girl !
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@piperkay That is wonderful! Thank you for sharing with us and congratulations!
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Piperkay, so sweet of you to think of us. Those are the stories we look for. Best of luck to you for continuing good health.
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Hello all, I don't get on very often as life gets busy. Just saw our oldest daughter off to Uni (starts in January in Australia) so big changes at our house.
As of Wednesday I've finished Xeloda (yea!), I have 2 more rounds of Keytruda, and then we'll do a PET to hopefully confirm all clear. I'm seeing light at the end of a year long tunnel again.
Interesting to note that after taking about 6 weeks off of Xeloda due to stomach pain, when I resumed I did not get stomach pain nor did the HFS come back. The only side effect was on-going fatigue which was mostly just after 6 pm… I couldn't do much in the evenings. So maybe my body just needed a break.
@lannie28 Just wondering if you asked your MO about Keytruda? I had stage1 TNBC in 2017 when the only treatment options were surgery, chemo, & radiation.. .that was it. When it came back in 2024 I consulted with both my previous MO and my new MO and they both said the new standard of care for TNBC (not just for recurrence ) was Keytruda after surgery, chemo, & radiation. [New protocols also add Xeloda if you do not get PCR at surgery but you don't have to worry about this]. Personally I was very happy to hear that new treatments to prevent recurrence are available to us TNBCers. Maybe in your case it was so small your MO felt it was not necessary but can't hurt to ask.
@piperkay thank you for coming back to share your progress. So glad you are doing well.
@gailmary you must have done your last AC infusion by now and on to recovery… well done… AC is tough. When are your next scans? We'll be praying the chemo has done it's job.
@rlschaller sorry to hear about the new development of a rash under your arms… hopefully it is nothing too serious.
Not sure where everyone is based but my family is in the Toronto/Waterloo area (Ontario) and have been digging themselves out from under all the snow for the last week. Hopefully less where you all are.
Take care & stay strong everyone😊
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It sounds like everyone is doing pretty good all things considered.
I am except for those days when you just feel lousy. DD says that's when I do the "Gail Grumble". Today's one of those days. Gotta shake it.
New now is the after taste/ feeling in my mouth. Belly pain has been an issue lately. Lactase helped a bit. I think it's time to use the acid reducer dr suggested. Sure hope it won't develop into colitis. Arthritis has been a bother but then this is day 10 in the cycle. Have some low Rib pain on left side too. Will report that to Dr in 2 weeks when I see him for my last infusion. It'll have been 6 months since pet. Hope he'll plan for more than just mri before surgery in case they find anything then maybe biopsy when I have surgery .
My pcp is bugging me about a medicare wellness visit. I refuse. Dumb questionnaire. Answers are in my chart. Look at dx. Very hopeful energy will cone back with correcting thyroid. And ending chemo soon.But really she wants to do the lipid panel for cholesterol. We last tested in August. Mine is at 201. 2 points high. And I had the heart calcium test done. High at 1 point over 0. Can anyone explain why she's adding stress?
@justsnapd8 it's normal with thyroid replacement to increase it slowly. I guess I'll just have to be patient. Ha! I'm a patient alright. Patient for recovery after surgery too. Glad my dr checks Vitamin D. It's pretty important. as much as I'm in the sun normally, I make little. I think a good range is 30 to 70. First time mine came in at 17. Dds was 12. Important for so much. I hear they are looking at it maybe is really more of a hormone than vitamin. Huh?
Grumble over
Take care all
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@dawn68 nice to hear from you and get your update. Congrats for your daughter heading off to Uni, that is exciting. It was so strange when my son left home lol, then it was really Nice. The empty nest was easier to get used to than I thought . These milestones in our lives and kids lives are great markers along the way. . Glad you are finished with Xeloda, and nearing the end of the Keytruda plan. Fingers crossed the PET is clear and this can be behind you.
@gailmary grumble away ! This is not an easy journey and grumbling helps. I guess it’s a good sign that your PCP wants a wellness visit, shows they are getting back into a normal mindset around your health? Might test to see if blander foods help with the stomach pain, fingers crossed it just goes away and does not affect your digestion in a serious way. I only had a MRI before surgery. The PET came 6 months later. Hope you can Treat yourself nicely, do fun things, and laugh often before and after surgery. You deserve it.
I find when I feel lousy it’s so much harder and heavier not to want o grumble, though I know that is not your way, you are not a big grumble person but you need to, and I’m glad you shared! I felt a bit grumbly this morning, day 5 of my cycle is not my best day. And when you feel good, it’s almost like …what cancer ? I’ve Had a metallic taste in my mouth as a side effect, almost like a cotton mouth feeling where everything tastes like cardboard. It doesn’t last more than a few days, but it’s a drag for sure. All in all I’m feeling good , PET scan on Tuesday and MRI next week. If the nodules under my arm are cancer again, we’ll switch to a new chemo. I’ll keep you all posted.@justsnapd8 I take a higher dose of Vit D , D3 5,000iu (125 mcg). How does it feel to be home, now it’s been a little while? Hope your recovery is going well.
Hugs to all ❤️❤️
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Well I grumbled more today but I think it's over now. I'll take a little extra to help me sleep. The Rib pain I have. I remember now bumping into a piece of equipment a week ago thinking that will be sore for a while. Yet no bruise and the ouch came days later. Glad I remembered. My good friend let me grumble tonight. For sure there are others in my life that wouldn't hear it. Glad to have her. I hope you all have someone.
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@gailmary You've earned the right to grumble! We are here for you anytime you need to unload. I hope your rib pain resolves quickly. I've had a rib injury a couple of times and they are not comfortable
@rlschaller it feels great to be home! I feel a little better every day. ☀️0 -
hi all, I’m new here and really looking for my people. DMX 2/17 with minimal lymph node cancer in 1st sentinel node. Full lymph dissection. Radiation to come followed by keytruda/xeloda. Could use a hug
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Hey @mugsy44, and welcome! Did you have chemo before your surgery? I'm assuming so but you didn't mention it lol. I had DMX in early January. Left was by choice, right was where the cancer was. Six of eight lymph nodes were covered showed a tiny spot of cancer. I am getting infusions of Keytruda and will start Xeloda this Sunday. I have been putting an offer as long as I could lol. Radiation still to come! I just wanted to share that with you because it sounds like we're on a similar path. (((HUG)))
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@mugsy44 Big hugs to you and a warm welcome. 🤗 this is a great group to share with. Glad you are here with us. It is always hard with this diagnosis. I remember being flabbergasted that this was even happening to me. I felt so good, how could I have bc. But I did, and do. And I still feel really good. So follow the treatment plan and make friends here, share and ask questions . It is so helpful to find your people who understand and can offer from their own direct experience. Everyone’s body responds differently to treatment, so take that into consideration as you read through the threads. And I love the virtual hugs I get here.. that is super helpful out of all o it.
@justsnapd8 hope the start of Xeloda goes smoothly. You might want to buy some creams just incase your feet or hands get dry or peels a little . I used Udderly Smooth which liked, I know others used aqua for. I found radiation to be the easiest part. ❤️
@gailmary how are you feeling? Hope the rib pain is resolved and quilting is going well.
I was in Michael’s recently and treated myself to a new set of drawing markers. Like a kid in a candy story I touched and tested , and felt giddy with my $12 purchase. Love drawing, most I zen brush work digitally, but there is nothing like holding a pencil or marker to make me smile.Just had my PET scan last week, and will have the MRI on Monday. Hope to have results by Wednesday, and will hand deliver to my MO at MSK on March 14. Since I use both Northwell and MSK , so the sharing of tests takes time and this visit I want to make sure MSK has everything when I’m there on March 14. My case is a bit more complicated then most, and I can use all the expertise I can get.. lol. It’s all good. I feel great, managing the Carbo taxotere combo well, though a bit more tired each cycle. Hugs to all I’ll keep everyone posted.
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thanks for the welcome. I struggling feeling alone even when I’m surrounded by people who love me simply because they can’t quite understand what this is like. So I’m thrilled to find a community (but horrified that there IS a community who’s gone through this awful thing!) I’m also a super active control freak who struggles with the slowness of treatment. Why can’t we fix is NOW?! Sigh. Sorry. Venting….
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also….all you NED folks - you’re amazing and seeing you here is so encouraging and I’m thrilled to have you as role models.
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