Calling all TNs
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I had surgery last Thursday, see my oncologist Tuesday next week, this is so frustrating after 17 years for it to come back, my doctors are shocked, hate losing my hair again ughhh
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@justsnapd8 hang in there. These chemos knock you on your butt, but they do the job. This is the hard part, surgery is the easy one at least it was for me.
@pinkone501 sorry you have had a recurrence. I’m in the same boat, mine came back too, though very soon after I thought I had it beat. And I’m 65 and it’s not too bad to be honest. The chemo second time around is a targeted therapy called Trodelvy and it’s mild, slowly melting my 9cm tumor, now down to 6cm. Very few sideffects too. I feel really good, just living with cancer treatments… Managing emotions with a positive mindset helps.
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@rlschaller Thanks for that! I need to be more patient. I'm hoping the AC part of treatment isn't too bad, and the surgery is a breeze.
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@pinkone501 loosing my hair again was hard for me too. The first go around I wore scarves, but this time I bought a beautiful wig… and I’m loving it .
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Morning Ladies, oncology appt tomorrow , so dreading it, I am hoping she will be willing to wait until after this holiday to start treatment of whatever she decides, we are having our yearly family reunion on Sunday and I really do not want to be sick
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Another question, since I have already had surgery how will we know if the treatment is working or not, my tumor was only 7mm so my surgeon went ahead and took it out, I do not think she expected it to be triple negative after 17 years
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@pinkone501 My MO postponed my treatment until after a cruise to Alaska, for exactly the same reason. I didn't want to be sick on my cruise! Talk to your MO. Chances are she'll postpone for you.
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Hi all,
Was enjoying the lovely break of feeling completely normal for a month after recovering from surgery & before starting Xeloda 😊. It was a bit delayed as my BS, not my MO, wanted me to consult with an RO prior on having radiation. It is a bit tricky as I had radiation 7 years ago the first time I had TNBC. Upon consultation with the RO, based on previous radiated field, he would only be able to safely radiate the supraclavicular nodes but was keen for me to wait on Xeloda and do 3 weeks of radiation first. My MO did not see any benefit in this but was willing to support the RO recommendation. I also did not see any benefit in postponing a full body treatment to treat one small area. So after reading a lot on these boards & various different protocols, I went in with the suggestion that we do radiation AFTER Xeloda. Both my RO & MO agreed. This will also give me more time to decide if I want to do it.
So Xeloda starts tomorrow, same day as my Keytruda infusion. It will be 14/7. I am very nervous about the side effects as I am very active. I can not imagine having to limit my walking and my hand usage for 6 months!!
@pinkone501 also in the same boat dealing with a recurrance after 7 years… I was feeling pretty safe after 5 so it was a bit of a shock. But 17 years is a really long time so I can imagine how frustrating that is. Do they call it a recurrence or a new primary? My BS & MO both think mine is a new primary even though same breast but impossible to know. I'm 56 so not too much behind you in age… you can do it… one day at a time. Because I did AC the first time I can not do it again —in a way a shame as I think it kicked my cancer's butt & kept it away as long as it did . This time I did Carbo/Paclitaxel which was not pleasant but I found much easier than AC. Other than extreme fatigue day 3-5 it was pretty tolerable.
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@dawn68 I have my oncologist appointment in the morning, very scared of what she might say, I had Ac and taxol the first time and radiation
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Already had surgery 2 weeks ago , 7mm tumor , lymph nodes negative
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@dawn68 Glad your surgery is behind you now and you can move on with treatment. Hoping Xeloda is very tolerable for you. I have been on it for two years now and it's been holding me pretty stable. In case your not aware it helps to limit your folates to help your hands and feet. There are many great creams( Aquaphor, Bag Balm,Udderly Smooth etc.) and I think I used them all lol. Did your MO talk to you about using Diclofenac gel? That's one of the latest recommendations for to help prevent HFS. I love to walk and exercise so don't let Xeloda stop you. If you develop HFS you will learn how to manage it along with your MO. I have had couple dose reductions also to help manage symptoms.
Overall it's a great drug and most women have had success with it. I wish you all the best as you start Xeloda.
@pinkone501 Good luck at MO tomorrow, good chance she will be ok with wait until after the holiday. Hoping you get to enjoy your family reunion.
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@rlschaller @justsnapd8 @dawn68Hey Ladies, so went to my oncology appt and I guess it was not as bad as it could have been, she said it was early stage but since it is triple negative, chemo is required, she said she did the genetic complete panel and mine were all negative, which confuses her, she said we will do a lighter dose of chemo taxol/carbo once a week for 12 weeks and then see about radiation , she said this is not a recurrence it is a new primary it is in a different location in the breast, anyone with any input on these drugs, she said the lighter does has less side effects, last thing she said to me was your going to be fine, hmmmm
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I'm almost at the end of the 1st half of chemo tx. I get carbo/taxol/keytruda every 3rd week, and taxol-only every week. I think getting it this way helps me tolerate it. I'm sorry your MO wouldn't postpone for you, but I think you'll be fine. Pre-meds ward off SE's. They've come a long way in preventing nausea. You should have several scripts for home to treat any breakthrough nausea. (I've had none so far). My MO says "We no longer give you a bucket and tell you to deal with it." My 2nd half will start in 2 weeks. AC and Keytruda. Time will tell what SE I have from that.
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she did postpone until 9/16
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@pinkone501 ok - early stage tnb , and only 12 weeks of chemo . I remember the carbo/tax combo I also had it once a week for 12 weeks. It was not too bad, I had some fatigue each week but manageable. I did not loose my hair until later on, but that too is manageable. What helped me enormously and still does is a mostly plant based diet and excercise routine. I really recommend it, if you are up for some lifestyle changes. There is a great site Maple Tree Cancer Alliance has free downloads of exercises, videos, and recipes and meal plans. Though every body reacts differently, see how you feel. Curious that your MO said new primary though it’s tnb and in the same breast. Probably does not matter. And yeah ..you get to go on your trip. Enjoy.
@justsnapd8 congrats on making it to the end of round one chemo tx. Agreed the premeds are a heaven sent. I also had prescriptions for home, and needed them at times during the A/C regimen with Keytruda , but not too often maybe once a week. I did loose my hair by the time i finished that round and had surgery, but it grew back. I found with the A/C I lost some appetite and making a (vegans bone broth super helpful for the times I couldn’t eat, soups were nourishing and handy. Also peanut butter and crackers … go figure! Most of my SE were 2 days a week, infusion on a Thursday and Sat and sun felt fatigued and a little nausea but then ok for the rest of the time. I also did a lot of mindfulness meditation, focusing in the inbreath and out breath was the most helpful during that time. Again, everybody is different, we find what helps and share it. ❤️
@dawn68 so good surgery is done, and you have a treatment plan you like and time to ponder. Xeloda side effects were not terrible for me, my MO lowered my dose when my hands and feet reacted. I loved Udderly Smooth ! And I’m an active Walker, it was manageable . I know what you mean by feeling normal during a break in treatment. I actually feel normal most of the time on this targeted therapy I’m on, even though it’s a treatment - it’s much milder than the first round chemos.
@cookie54 so glad to read that Xeloda works so well for you. Wow 2 years, that’s fabulous. Cheers to being relatively stable. I’m in the same boat, but with Trodelvy.
Wishing everyone a lovely evening, and all the best as you / we carry on . Hugs to all.
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@pinkone501 Oh I misunderstood! So glad she postponed though. Enjoy every minute of your family!
@rlschaller Thanks for sharing. I'm not a cook, but my SIL is. She can do a bone broth for me, although I'm not sure it'll be vegan. I use peanut butter and graham crackers for a late night snack, as they don't trigger my reflux. I've never been one to meditate, but I can read up on it. Thanks again for the suggestions. 🤗
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Thanks Ladies, Hugs to all
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And I just saw stage 1B but grade 3, been so long forgot what those mean
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Stage 1B means it was found early, pinkone501. Grade 3 means it is aggressive and fast growing. Most TNBC is grade 3. Mine was.
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Thanks
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For anyone interested in food to manage SE, this is one of my favorite cookbooks (chicken, fish, and vegan) has great recipes to help manage SE and treatments / life in general- very tasty!
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Morning Ladies, can you tell me if with the taxol/carbo did you lose your eyelashes and brows also, last time on the Ac and Taxol, I never lost my eyelashes and brows
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@pinkone501 I'm almost done with carbo/taxol and I haven't lost my lashes or brows. Hopefully, I won't lose them with AC
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hi ladies, I didn’t loose brows or eyelashes with any of my treatments. Brows and lashes are thinner, but still there. 🥰
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Yayyyy
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@cookie54 @rlschallerThank you so much for all your advice, always very helpful. I started Xeloda yesterday. Not sure if it is due to my weight (110 lbs) but I am only on 2000 mg per day of Xeloda so seems a lower dose than most who are using it due to not getting PCR at surgery. I haven't seen Udderly Smooth here (Australia) but my MO recommended a cream called MooGoo and I have a beeswax based ointment I'm using already as preventative. I did read that article on this site about Diclofenac gel so will ask my MO about it as & when I feel the first inkling of HFS. So glad to hear I should be able to continue regular walking… hopefully gardening as well as I live on acreage so lots to do!
@pinkone501 I did the Carbo/Tax combo for 12 weeks as well as I could not do AC again. I lost my hair much later than when on AC and although most of it fell out, not all. I also did not lose all my eyebrows or eyelashes… just went very thin as the others have said. I found Carbo/Tax/Keytruda combo easier than AC and was pretty functional most days. They did give me steroids to take for 2 days after my infusion on the week of both Carbo&Paclitaxol though so I felt great those days 😁.
@justsnapd8 Congrats on finishing your first line treatment… one step closer! All the best on AC ! Are you doing it every 2 weeks? This was my protocol and the 1st week was hard but the 2nd week was okay so it made it easier to get through.
@rlschaller thank you for the cookbook recommendation.. .I will definitely be looking that one up. Hopefully I can order it here.
We are moving out of winter and getting an early spring here with unseasonably warm temperatures … almost 30 degrees celcius (86 F) during the day… so really enjoying being outside almost full time again 😎
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@dawn68 I think it'll be every 2 weeks, but I'm not sure. I see the MO Sept 9th. I'm sure she'll clue me in at that time. She has previously told me some people find the AC easier than the Carbo/Taxol. I somehow don't think that's true. How was it for you?
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Morning Ladies, it is almost the holiday weekend, hope all of you enjoy it
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Hey Ladies, quick question, I start my taxol/carbo on Sept 16th, go figure my birthday is the 18th, ughhh, what do you think my chances are of being able to work the rest of the week in the office, my doctor says I should be able to since it is being given in smaller doses
Also have any of you done the ice packs for the hands and feet during the taxol, or does it even matter?
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