Calling all TNs
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Hey Ladies, hope you guys are doing well, I just finished my 4th taxol/carbo, feeling great no major side effects, just cut my hair off, it was drying out and looked like a birds nest, so now using my wigs and a ball cap, so ready for all this to be over
When I did the Ac 17 years ago I remeber feeling like I had the flu about day 4 or 5, I was doing the dose dense then, so glad no more of that for me
Go Yankees
Loving the fall weather for sure
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@pinkone501 I'm glad you're tolerating the chemo well! I miss the taxol/carbo, versus the AC I get now. But on the bright side, I only have TWO more infusions, and I'll be done with it! Sorry about your hair, but it had to be done. I wear scarves and occasionally a ball cap. I'm so glad we all have choices!
I don't think I could tolerate dose-dense AC, and I'm thankful I don't have to! 😉
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Thank you everyone for your responses this group is great and so supportive.
I have mri results back sort of as I'm hearing more in depth this afternoon when I see my nurse and consultant I was called by mybreast care nurse and she notified me that my cancer is multifocal and I have more than they thought plus on of them is about 8cm which is terrifying for me. At the appointment today I will be having more biopsies and i have a full body CT scheduled for Saturday then on 31st I have an ultrasound and mammogram scheduled.
I am starting IVF treatment today and have my appointment for that on the 1st November so hopefully can have children in the future. This was rushed as I will be having chemo before surgery and chemo after as well but do not have any dates yet for starting.
This waiting is awful especially when I am getting little odd bits of information but no full picture yet. And hearing one is 8cm worries me as that's like the end of stage 2 and if it's affected the lymph nodes then it's stage 3 it's all making me crazy.
Any advise?
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@ovarianwarrior90 I hope your meetings with your team went well, and they explained your test results in a way that was reassuring and realistic. The waiting is so hard, I know. And the mind creates stories based on fear, and then we get lost in imagining the worst and it snowballs. So notice that , if that occurs and see if you can stop, take a breath, observe and then proceed again. Affirmations help me a lot. Journaling as well.
From my experience, 8cm is workable, mine was 10cm! And now they can’t feel it. I have other progressions on the skin, but that is another story altogether. The lymph nodes as well are workable, and stage 3 is not the end of the world either. So my best advice to treat yourself with kindness and acceptance. Notice how the worry mind acts up, and if at all possible just notice with a sense of humor… “there goes my mind again, ah interesting….” And then distract yourself with something lovely, a funny movie, and talk with a friend, a walk in the sunshine. There is so much goodness in your life to refocus on that, day by day moment by moment is the best practice. And it takes practice. Chemo before and after surgery is standard of care with TNBC. How is the IVF going? That’s exciting!
Happy Saturday to all - beautiful fall day here in Hoboken. I start radiation on Monday, and I’m looking forward to getting that going. My PET showed NED in the body and neck/spine - yeah! But progression under the skin - which I knew cause it looked awful again, so I’m off Trodelvy now, and back on Carboplatin for 12 weeks. Had infusion on Thursday, and feel great. My body takes chemo really well -not sure if that is a good thing anymore lol…but no SE so life is good. Hopefully we can get this tnb on and under the skin under control.
Fingers crossed the Yankees can win tonight, last night loosing in the 10th inning with a grand slam… hugs to all.
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@ovarianwarrior90 It's so overwhelming at first! Then, you get the test results, meet with your medical team, and find out what the plan is moving forward. My tumor was 5.3 cm. The latest US showed it being 3.8, so it's smaller, but more importantly, softer. I keep hoping that sucker will disintegrate and disappear! I do have a lymph node that was involved, but it "looks normal" on US now. All that said, just take one day at a time. It's all any of us can do.
@rlschaller Except for your skin involvement, yay for your NED! And yay for no SE!
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Rhonda, I AM surprised to hear that chemo before and after is standard for tnbc. I've not heard or read that anywhere. But maybe that explains why my doctor said that after the taxol and carboplatin we will do an mri and then decide if AC is necessary. I told him to treat the cancer aggressively. I figured it depends on how bad the cancer that determines the regimen recommended. Though I do believe they have some flexibility anyway.
But mine is a grade2 Stage 2a.
Glad chemo was so eady for you. I hope and expect your radiation will go smoothly as well. And yay on the great scans.
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Gail - in one of my favorite books on managing cancer by Dr. Jane Plant “Your life in your hands” she said if you ask 40 cancer doctors for treatment opinions chances are you will get 40 different treatment opinions, so yes…lol flexibility and variety is the way of it. From my experience for sure… Hope you can skip the AC if that feels right . My MRI was clear the first time around after the Carbo/ taxol and we did the AC and post surgery with Xeloda and I still had a recurrence. Mine is very aggressive, and grows fast. It seems your is milder and grows slower, so yeah!
Happy Sunday.1 -
It's so quiet here. I hope that means your all doing well. Do tell.
No much going with me. Half way through taxol and carbo. All side effects are mild. Can't really complain. Worst is constipation from Zofran. But it's not uncomfortable. I just deal with it. 3 days ago I started having weird taste In My mouth. Snotty nose that loratadine doesn't fix but it keeps pains at bay from zarzio. So half another antihistamine helps. No nausea. So yeah, I'm good. Just tired. I do try to get a walk in daily but short of breath if I go to fast.
Yesterday I went to a Halloween party. I got recognized for best costume. As a witch. Then in costume I went to clinic for the zarzio shot. The gals loved it. My clinic has 8 nurses in the infusion room. Busy place
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@gailmary what a hoot! Love that you got recognized for best costume and went for the Zarxio in costume! Fabulous . Love how you’re living life out loud. So happy to read it is all manageable. Sounds like everything is going along fine, and SE are mild. I used to get a metallic taste in my mouth form the Carbo / taxol. Tired is to be expected, the body is working so hard to heal with these strong meds of chemo and pre meds. Walking everyday is so good , I do the same. I remember them telling me that to get through fatigue walk a lot. It seemed so counter intuitive and then it helped. I was still tired, but not as much , it really did help. Which isn’t to say that going to bed at 8:30 pm wasnt awesome as well lol…
I’m good too, just finished the first week of radiation. My breast hurts a bit, is sore but manageable. I have three creams that I alternate with and my RO told me to sleep with a sports bra on, which actually helps a lot. Met with the MSK MO and he will work with me as well, along with my Northwell MO. Was reassuring that he concurred with my current treatment plan, and past plan. Future plan pending on the radiation and Carboplatin results, he had a few options to recommend and will send that to my Northwell team. He specializes in liquid biopsies and aggressive TNB. From what I understood from our meeting. Liquid biopsies helps detect progressions early, which is good for me as my TnB grows so quickly as soon as the medicine I’m on starts to fail. He feels this way we are ahead of it, instead of chasing it. I’m on board. If insurance doesn’t pay for it, MSK pays for it as it’s part of his research. He runs a few clinical trials for metastatic TNB as well out of MsK so I feel like I’m in good hands. I’ll meet with him again after radiation finishes.
It’s a beautiful fall day here in Hoboken, Nj sun shining and in the low 50s. Just came back from a long walk. Wishing everyone a lovely Saturday.
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Rhonda, I figured you were in the middle of radiation. I hope it continues to go well for you. Interesting about a bedtime sports bra.
So these liquid biopsies, how often will they be if he can catch progression right away? Do they check your tumor markers too? Mine are almost useless.
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@gailmary I'm hangin'. I had my second to last AC on Tuesday, so one to go! This one hasn't been too bad. I'll have Keytruda infusions after that, but that should be a breeze compared to chemo. I take Compazine as the first line against nausea, and it hasn't caused constipation. I have a couple of other nausea meds, including Zofran, but I haven't had to take them. Claritin works great for the snotty nose and the bone pain. I didn't have pain with Zarxio, and I haven't had any with Neulasta. I consider that a WIN! I'm glad you got to get your shot in costume. How fun for the nurses!
@rlschaller I love how you keep your positive attitude with everything you've gone through. I'm glad the radiation discomfort is manageable. Sounds like you have a couple of great medical teams behind you as well. Big hugs!
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@gailmary he said that they do the liquid biopsy once a month, it’s a simple rblood draw so easy procedure. They don’t look at the tumor markers.
@justsnapd8 counting down ! Are you finished after that or is there surgery and post chemo..I don’t remember your treatment plan. Glad you are doing well.I roll well with adversity, no choice lol.. I don’t want to miss my life waiting for things to be different. They are what they are , it is what it is and my joy at being alive is a good choice seems to me. I could wish it to be otherwise, and I do at times ! And then, I remember that wallowing in a story of woe is not a fun or healing place to stay for long for me. Visit maybe on occasion, which is natural but then remember that a positive mindset is healing and the immune system responds better to calm than stress. So positive it is. ❤️
Enjoy your Sunday all! Hugs.
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@rlschaller Definitely not finished. I'll have surgery 6 weeks after I finish chemo. I'm opting for a DMX. Then radiation and more Keytruda infusions. I try to keep a positive mindset though sometimes it's just hard! You do well, and you're an inspiration to me and I'm sure others here too. 🤗
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Morning Ladies, been really busy at work, 6 more taxols/carbos left to do, really been pretty easy, but I have noticed when I blow my nose it is bloody not sure what that is, hope all of you are doing ok for the most part. Never heard of the liquid biopsy before
Sure miss my hair tho
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@pinkone501 nice to hear from you and am so glad it’s been pretty easy. Just 6 to go ! I also had bloody noses, and when I blew my nose during Carbo/taxol. I was told that the chemo caused thinning and irritation, and my MO recommended AYR saline with aloe gel to coat my nostrils which helped. It stopped and wasn’t a big problem, though it did freak me out at first. You might ask yours about the gel.
Happy Wednesday 🤗
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@pinkone501 @rlschaller All this time I thought it was just allergies! I'm past the taxol/carbo, so it could be allergies. I'll have to ask the doctor about it.
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Morning Ladies, I still need to remember to ask my doctor why she said I did not need the Keytruda, puzzling to me
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Morning all, Happy Sunday.
Finished 10 radiation treatments, five to go. Seems like it’s working, the skin nodules have almost all dissolved, it’s what it’s in the underlaying skin layer now to dissolve more. It’s all less red and slightly pink so that is good and some areas normal color… fingers crossed it continues. Radiation has been fine, no Se really, just sleepy a little earlier in the evening. I can manage the discomfort on the breast as the skin breaks down and heals, it’s all good. Feel good. The weekends are awesome, cause I feel so good and energetic. Did a short cardio and stretch routine early today, and then made fresh carrot and apple juice. I see both the RO and MO this coming week, will keep you posted. Today is a cooking day and a long walk planned day, just love the fall on the east coast. Cool weather, sweaters, sunshine. The Carboplatin dose I’m on is a low dose, so does not effect my energy level that I can notice. Pinkone - let us know what your MO says, curious as well why she thought the Keytruda was not part of your plan.Hope everyone is hanging in there, cancer treatment is not for the faint of heart or spirit... wishing you all a lovely day to persevere and a heart filled with positive energy onward .
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@rlschaller Good to hear that your treatments are working. I do hope the success continues. It sounds beautiful where you live. Here iit s just warm and damp lol. Louisiana!
Have a beautiful Sunday everyone!
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A quick check in to let you know that I'm reading your notes and wish everyone well. I, too, had minor bloody nose issues with Taxol. I had a small trash can with a swinging lid in the bathroom that my dogs never bothered. A reminder that our dogs aren't that far from wolves, my youngest was drawn by the small amounts of blood and I would catch her with the lid on her head! I sprang for a sturdy Simple Human trash can (obviously, not the motion-activated option) and the bleeding quickly resolved when the treatment ended.
Lyn
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During my AC-T treatments, I did not have nose bleeding. However, prior to chemo, I had nasal polyps for decades that really caused me discomfort (post nasal drip, difficulty swallowing and breathing, etc). After a few chemo infusions, the polyps appeared to have dissolved. This may be the result of thinning of the nasal lining (as mentioned by RLSCHALLER)? It was the best side effect of chemo. It’s been over 5 years since I started chemo and I don’t think the polyps have grown back.
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Norcals, even if the polyps did grow back they are not bothering you. That's a win!. I never thought of a best side effect.
Got the 3rd of 4 carbo last week. As usual days 5 + 6 were the worse. The diary came in handy there. Today a bit better. Weak and shaky still. It's getting old. I wonder how long will it take to get my strength back when this is over. The faslodex for the er+ cancer didn't make me feel weak. Just tired. I'm going to have to really push myself to walk the treadmill this winter. I need to start both again soon. I want to be convinced that I need the faslodex and my cancer didn't just flip to TNBC.
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Hey Ladies, my Oncology doctor told me Keytruda was not for me because I have nothing they are watching and that it is usually used before surgery and metastatic and since my tumor was tiny it was not for me, so I guess I have to trust her, any way she told me to use the saline solution in my nose and see if the blood stops if not I might need to see a ear nose and throat doctor
Hope you ladies are feeling ok
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@pinkone501 Sounds like she goes with experience rather than protocol. That may be a good thing! My MO follows the Keynote 522 protocol of which the key is Keytruda. The protocol is based on results from a clinical trial funded by the makers of Keytruda, i.e. Merck. I've read a little about the trial, but I'm not a medical person, and most of it goes right over my head, but it did look positive. I can tell you that my cancer center bills Medicare a ridiculous sum for each Keytruda infusion. I've had Keytruda with every infusion, which includes both Carbo/taxol, and AC. And I will have more Keytruda after my surgery; 9 more infusions 3 weeks apart.
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It’s good to know that there are options for TNBC. When I was receiving treatment in 2019, the only option was AC-T for curative intent. My understanding was that the oncologist had discretion to add Carboplatin if you had brca mutation. When I did not achieve PCR after surgery and one node was still positive after surgery, it was recommended that I have six months of oral chemo (Xeloda), but it wasn’t the protocol, just an option. Keytruda wasn’t event available unless you were in a clinical trial. I’m hoping that the new protocol really helps all of you and that even better meds with less side effects are available in the future.
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I've been treated for hypothyroidism for years. But about a month ago, my MO recommended I talk to my PCP and get her to increase my thyroid medicine, which she did. She increased it again today! I've read that chemo can cause hypothyroidism and hyperthyroidism. In my case, my thyroid was already slow, but it looks like it just quit. Has anyone else had chemo affect their thyroid function like this?
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Morning Ladies, boy are the side effects hitting me after this 7th dose, really really tired and my teeth hurt like a toothache, no cavities not sure why it is hurting
The nasal spray did not help with the blood in the nose
Hope you ladies are ready for Thanksgiving , it will be here soon
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@justsnapd8 Yes, Ive heard along the way that chemo can affect the thyroid. Mine has not been affected , but my GP did ask my MO to monitor for it .Sorry you are dealing with this as well.
@pinkone501 try the nose gel, it might soothe the inner membranes.
Thanksgiving this year is going to be delivery lol ! One of my favorite restaurants here makes a full dinner for 4 and you pick up by 2 pm.. and so that is my plan. I’m very excited, includes Apple strudel for dessert. I’m going to allow myself wine this year as well. Just living the high life !
@gailmary I hope you regain some of your energy and strength after you finish the carbo. If you can, do Push yourself to do the treadmill,I’ve found excersise really impacts positively both my mood and fatigue.Happy Monday all!
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@rlschaller I love the idea of getting Thanksgiving dinner from a restaurant! That's going to be a great dinner. Good to know others have had thyroid issues due to chemo. It was fine until recently. Hopefully, it turns around when the chemo gets out of my system. My last infusion is tomorrow, so I have a ways to go yet.
Have a Happy Thanksgiving everyone!
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@justsnapd8 . I have an infusion today too. Cycle 2 day 15.
My thyroid did go down a little. So far. I wasn't religious about my meds. I am now. Hope it's all I'll need. MO says all will go back to normal. He's checked it twice so far.
My energy comes and goes on schedule. Still nice enough for a short walk, maybe 2 blocks to dds.
@pinkone501 I hope the SE passed quickly. Interesting that your teeth hurt. Everything hurt yesterday but it was arthritis. We had a storm bl8w through.
Thanksgiving will be small here. Just dh and dd. I'll do my favorite pumpkin pie and cranberry relish. It'll be deer hunting season here and nephews will be coming here to Wisconsin from Florida. They will be staying across the street but I don't have to feed them.
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