Calling all TNs
Comments
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To MountainMia: Just adding my own "We're all hoping for the best" wishes and hopes, thinking of you. I don't post often, but read a lot and you are in my heart.
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Mia--just adding my best wishes to you for a good outcome. Hang in there, sweet one. I'm definitely "with you."
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Mountainmia, Prayers and good vibes coming your way! Hang in there we, are all with you
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Oh my goodness, thanks, everyone. I KNOW you know how much it helps to just say it out loud! And yeah, Trish, we had to get weird, just to get through this!
So what's everyone been up to? Does anyone have GOOD news? Of any kind? What are you doing for fun? Have you spent good times with family or friends? Any travel? Milestones? Funny conversations or beautiful birds in the yard? What's up?
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I do have some fairly upbeat news to share. I actually had a great weekend. Long and hard, but good.
Backstory: I used to be a writer until chemo ate my brain. I worked on Hallmark movies and tv shows. After 11 months of chemo I could not write. At all. So I went back to another love, making jewelry. It's fun and creative and people seem to like my stuff.
Before the Pandemic, I sold in a couple of shops and at Art and Crafts shows. My favorite was at a winery in Temecula. Even though they stayed open, with everything outdoors, I hadn't gone down there for the past 18 months. Too risky for me.
I finally went back down this past weekend and had a blast. Perfect weather, really cool people stopping by and I sold more than I ever have before. People were friendly, respectful of personal space, surprisingly good about mask wearing and ready to spend money. I even have a couple of special orders. Yay!
Plus my sister lives nearby, so I was able to stay with her for the first time in 18 months. I really missed seeing her.
All in all a really good weekend. I look forward to doing again in a couple of weeks.
Trish
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Trishyla,
It’s great that you have been able to pursue another love. I had about 11 months of chemo as well, and I agree with you that it’s hard to focus and write. I’m not a creative writer, but my work does require a lot of utilitarian writing. I’ve noticed that I have a really hard time concentrating on written work for any extended period of time. Work that usually took me an hour to finish, takes days now because I need to take constant breaks. It’s really frustrating because I have been able to do hours of gardening and yard work without a problem.
Mountainmia - one positive that happened this last week is that we have been able to harvest most of the grapes from our property. It’s a real relief every year when harvest time comes around, especially with all the fires these past few years
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MountainMia, - hoping for fat! Yup, something most people would not understand.
. (ps, if not fat, it may also be a cyst. I have both. oh well. Trishyla, - that's terrific! Wonderful to have a craft that you enjoy, - and can also make money from your creations!
Stay safe and well, everyone !
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Hi! Hoping for fat like everyone else! Never thought I’d write that. Will we ever stop worrying?? On that note my oncologist just called about starting me on a chemo drug along with Keytruda. I’m TN left breast, early stage, tumors 6mm, sentinel node positive, double mastectomy before treatment. 8 rounds of chemo, AC and taxol. 25 radiation treatments. Finished 9/14! The drug that she suggested is call Xeloda. Anyone familiar with this? This is a trial as is the Keytruda since I’ve finished treatment and it’s usually given with chemo.
Thanks! Susan
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1414,
I was on Xeloda for six months after AC-T, surgery, and radiation. Since I did not get a PCR after neoadjuvant treatment and surgery, Xeloda then keytruda was recommended. I didn't qualify for the keytruda trial, so I was only on Xeloda. I thought Xeloda was fairly easy on the system but it was tedious. I had to be careful with hand and foot care, but otherwise, not horrible.
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1414 - I had 4 rounds of AC, 12 taxol with 3 Carbo, had a BMX in Sept 20 and started Xeloda for "precautionary measures" in Nov 20. Because my SE's were so bad I could only complete 3 of the 8 cycles. I was dx'd with a recurrence this past July. This morning I completed 12 of 25 rads and will be starting Xeloda again at the end of October. I'm praying that the SE's I had while on madame X last year was due to having it so soon after my last chemo infusion. I did not have the hand and foot issues though that most have. My MO felt that whatever it was that was going on with my body was not related to X, but I've met others on here who had simiiar experience as I did. I hope and pray that it goes smoothly for you as it does for many others!
NorCalS - I think I chatted with you last year while on madame X. I'm so happy that it was tolerable for you. I hope that my body can handle it this time around. I often wonder had I been able to complete my 8 cycles if the recurrence would have occurred. I was dx'd agin in July right after my exchange surgery, but the "blemish" was already physically visible on my skin in Feb. 21, about a month and half after my last dose.
Trish - that's awesome! Do you have a website or Etsy? Or do you just sell locally? I love the Hallmark movies, especially this time of year. That must've been fun writing for them. I can relate, I was a School Counselor prior to my dx and have been blessed to be able to not have to work, but I do some consulting and have struggled getting things on paper, like you, or someone else said, what would normally take me an hour to write up now takes me what seems like forever. I have such a hard time concentrating and it has me so frustrated.
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Serendipity,
I think the dosage for Xeloda can really make a difference. I was supposed to start at a much higher dose, but my ANC was so low that I was on 3000mg (1500mg x 2) a day instead of the original plan of 4000mg. I think that helped, but I still got daily headaches while on Xeloda (intensity faded over time). I hope you tolerate the Xeloda this time around
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Serendipity,
After I finished my Xeloda treatment, I learned that others were on a lower dose for a year instead of the high dose for 6 months. If you have problems with the dosage, you may want to ask your oncologist about the different length of time for Xeloda
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NorCalS,
My oncologist said it would be a low dose and for a year. I’m meeting with her tomorrow in person to discuss. Any questions I should ask her? This has me kind of down in the dumps but I guess I should be happy that there is something available for the TNBC people. What a roller coaster of emotions.
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NorCalS - The plan is to start me on 3000mg, she says that is low, but last year she started me on 3500mg, that was max for me, and went down from there. UGH!
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Serendipity,
I was worried last year that my dosage was not high enough, but once I started Xeloda, I was glad that we didn’t start at the dosage originally planned. I think there is a difference with starting at 3000mg. I didn’t get severe side effects which allowed me to stay on Xeloda for 6 months. It did cause fatigue and I was so paranoid about hand and foot syndrome that I didn’t walk as much. That being said, it was much easier on my system than AC-T. I’ve been wondering whether I should have been on it longer since I would have started keytruda right after Xeloda if I had qualified for the trial. Is keytruda an option for you?
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Serendipity,
I was worried last year that my dosage was not high enough, but once I started Xeloda, I was glad that we didn’t start at the dosage originally planned. I think there is a difference with starting at 3000mg. I didn’t get severe side effects which allowed me to stay on Xeloda for 6 months. It did cause fatigue and I was so paranoid about hand and foot syndrome that I didn’t walk as much. That being said, it was much easier on my system than AC-T. I’ve been wondering whether I should have been on it longer since I would have started keytruda right after Xeloda if I had qualified for the trial. Is keytruda an option for you?
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Norcal - I'm not sure about Keytruda; it's on my list to ask my MO at my appointment next month. It was not mentioned to me though, so I have a feeling I don't, maybe because of other health issues I have? Not sure though.
How soon after your last infusion did you start Xeloda?
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The plan was to start Xeloda after surgery, then have keytruda, then radiation. Well, my ANC did not cooperate and we had to make last minute changes and have radiation first, then Xeloda, then keytruda. I didn't qualify for keytruda, so after Xeloda was done, I was finished with treatment. So, I've been holding my breath ever since.
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Ugh. I was concerned but not distressed by this lump in my scar, assuming as you've all said, likely fat necrosis. But it went from something easy to find but buried, to bigger and palpable by skimming fingertips on my breast. And this morning I can see it, and it looks like it's branching.
My appt is Tuesday first thing. I s'pose I could call and ask if she can see me today or tomorrow, but that's really not going to make any difference. Is it? At this point I am feeling distressed!
Need to run errands. Will check back in a while to see if there is any collective wisdom.
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Mountainmia,
If your doctor can see you today or tomorrow, it may make sense to move up the appointment because if further tests need to be done, you may be able to get an earlier appointment for those tests. Uggh. I hope everything turns out ok
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Alrighty, appointment rescheduled for tomorrow morning. I'm glad I called. Thanks.
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Good, MountainMia. Hopefully your doctor has some insight for you and you won't have to spend the weekend worrying and wondering.
Keeping my fingers crossed.
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I haven’t checked in for awhile, but please keep us posted Mia. I’ll be with you in spirit tomorrow.
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Me too!
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Thanks, everyone. I'll let you know what I find out. I keep flipping between thinking I'm a big whiny baby, and thinking this is important and I need to address it quickly. Not sure which it will be!!
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Sending positive thoughts your way for tomorrow's appointment!
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sending you positive thoughts and prayers.
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Thinking of you. Good luck
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Mountain Mia, Hoping you had a good appointment 🙏🏻🤞🏻
NorCal and Serendipity, Had my appointment with my Oncologist yesterday regarding Xeloda. I’m going to start on 2000mg a day and see how that goes. The goal is to stay on it for a year. Better get the moisturizer ready for my hands and feet! Since I’ve just finished chemo and radiation I keep thinking about it recurring. I don’t know if I could do this again. Does anyone know the rate of recurrence? My doctor doesn’t do scans unless there’s a reason. Have you all had the same protocol?
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Thanks, 1414! I have diagnostic mammogram and US scheduled for this afternoon, and we'll go from there. And on the dodgy digestion, I got results back from a fructose malabsorption test this morning. Need to see a registered dietician and figure out how to eat.
As to doing scans, I think it's not standard practice to do scans without symptoms. And rate of recurrence? Too f'ing high...
Have you seen the Predict tool? Sorry if we've talked about this before. Since we triple negatives don't do Oncotype testing, we don't get stats numbers from that. You can try Predict to see large-population stats for your characteristics.
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