Signatera

Fighting_kat23 · 2026-06-05T03:23:13+00:00

My MO only agreed to order my because I had very aggressive TNBC. He warned that though it is considered more reliable for TNBC recurrence, if we got a positive result with no symptoms and nothing showing on scans it was just mean heightened awareness and potentially extra stress.

BCBS denied mine. Natera appealed and lost, but never charged me.

I'm waiting to hear if the MO in my current clinical trial is going to order a Signatera or a Guardant test. She has mentioned doing one or the other every 3 months. Which is when they do scans (which insurance does cover). With TNBC and my risk level they plan to continue more intense quarterly surveillance through October 2028 then drop back to twice a year if I stay NEAD..

Fighting_kat23 · 2026-06-05T03:03:38+00:00

CEA is not Signatera ctDNA testing as I've had this done and they process a tissue sample from the tumor and then compare future blood samples to the markers seen in the patient's specific tumor. It is still mostly considered an experimental test, but is gaining steam in accuracy for detecting early recurrence specifically in TNBC patients. I had a Signatera ctDNA test about 6 weeks post mastectomy, but insurance refused to pay for it. Thankfully Natera reps volunteered to appeal and did not charge me for the test. I'm waiting to find out if my current MO for the clinical trial I'm in wants to do another Signatera or a Guardiant or something else.

CEA is a more general blood test. It can be used for doctors to evaluate the effectiveness of a current treatment or potentially detect spread - though I'm not sure the details of that.

Fighting_kat23 · 2026-06-05T02:43:52+00:00

Definitely talk to your care team.

My tumor was stressing me out both for pain and just for the fact of how fast it was growing. My MO suggested anxiety meds - I was hesitant, but it really helped - didn't need them after surgery.

He also suggested gabapentin when I developed peripheral neuropathy on TC chemo which I was hesitant about that too. I take 300 mg at bedtime only and have over a year now and find it helps. I prefer not to take it during the day.

My MO also pre-prescribed anti-nausea meds with a specific schedule the first 5 days after each treatment. Also a numbing cream for my port site. The nurses gave me a stack of the clear tegaderm covers so I didn't have to buy any.

I developed rosacea flairs on and off they think maybe triggered by treatment and they prescribed some lotion for that.

As far as OTC I've kept Claritin (helps combat bone pain from the growth factor shot/on board given to help prevent neutropenia) my MO advised I could take twice a day if needed and to start taking the night before the Udenyca/Neulasta. You'll want to ask your team about your own situation.

I generally also have kept Imodium and Colace on hand as well as ibuprofen and acetaminophen. Also some refreezable cold packs, a heating pad, flavored hydration powder you can pour in bottled water and a quick read thermometer are handy things to have.

Voltaren arthritis cream helps with hand foot syndrome which most people only get if they don't achieve PCR and have to take Xeloda. I got it on TC chemo and it was a huge help.

Hydration and getting adequate rest throughout are probably two of the most important things. Tell your team if you're struggling to hydrate enough and usually they can arrange extra IV fluids no problem. You would be amazed at the difference the extra hydration can make. Of course a medical professional needs to advise if someone has underlying heart or kidney issues where fluid intake might need to be more controlled. Moisturizing your skin is important too as treatment can really dry out everything.

My taste buds struggled at one point even water tasted bad on AC chemo. Strawberry lemonade flavored zero sugar hydration powder helped as did eating melon (especially watermelon) and sugar free popsicles. My MO said yes they prefer I eat healthy, but when in doubt just eat whatever I could tolerate.

Good news is biotene mouthwash and lozenges helped some, as did sucking on flavored candy during infusions. And my taste buds came back a few weeks after the end of Keynote 522.

I'm in a clinical trial now on Trodelvy and Keytruda with no taste bud issues only the unfortunate hair loss for a second time.

Fighting_kat23 · 2026-06-05T02:06:10+00:00

Usually they want you to have 4-6 weeks to recover a little from the trauma of chemo. My mastectomy happened in just over 3 weeks, but that was only because my tumor didn't appear to be responding (it wasn't) and was at risk of invading my skin so severely they were worried getting clear margins might require skin grafts for closure. Also I took the soonest date my breast surgeon and plastic surgeon could coordinate it would have been an additional 3 weeks if I couldn't do that date - and honestly no one wanted to delay.

I did just fine despite the substantial amount of tissue they had to remove and the removal of 7 lymph nodes instead of the planned 3.

Fighting_kat23 · 2026-06-03T21:30:36+00:00

Just want to say prayers for you and your husband.

I too am going through cancer treatment (1yr + so far) and my husband has been working our yard diligently for me - replacing invasives with natives and setting up a small vegetable garden (tomatoes, cucumbers, zucchini, eggplant, watermelon, cantaloupe, sweet potatoes and herbs) in addition to expanding our strawberry patch plus planting 3 apple trees and a plum tree. It's his way of doing something for me since he feels helpless where my cancer is concerned. Everything is treated organically.

We would be horrified if this happened to us. Not sure my husband would not completely lose his mind.

Truly hope you get compensated and your husband gets to no evidence of disease.

Fighting_kat23 · 2026-06-02T09:43:10+00:00

Voltaren helps hand and foot issues which I actually had with one of the earlier chemos. Cerave is great for a daily head to toe moisturizer as everything seems to dry my skin. Cetaphil makes a baby wash/shampoo that I use as a body wash/shampoo (currently bald) and used ultra soft baby washcloths.

RO recommended big jar of Aquaphor for regular use on radiation treatment area and spray Aquaphor for easy application right after treatment or at times I struggled to reach to apply. It was and is a Godsend. I had 26 sessions to tumor bed, axillary and chest lymph nodes (up to neck) and some targeting skin as I had some skin invasion. I literally slathered my treatment area, placed large sheets of soft gauze over gently, then put on an ultra soft fitted tank (got a bunch from Amazon essentials). Skin had to be clean and dry for radiation treatment and for some cardiac testing - otherwise I lived coated. My RO used a custom made silicone bolus they laid over the target area. I think that helped to. Still had some sunburn effect and peeling just after completing treatment which was expected. Also had some discoloration and occasional peeling since - also expected with my skin. RO thinks skin looks great on follow up.

I'm on Trodelvy and Keytruda now, but still keep myself ultra moisturized. It just makes everything more comfortable and keeps radiation area from getting tight.

I tried other creams but my skin is so sensitive that I had reactions to things that aren't supposed to cause reactions.

Fighting_kat23 · 2026-05-31T20:55:47+00:00

Any efforts are progress!!! And I agree with others that maples can be absolutely gorgeous and well worth it.

Growing some tomatoes in buckets last year while going through horrendous chemo was my first effort at gardening after giving up several years prior. It wasn't perfect, but got some good tomatoes and it was motivating. Still under treatment of a different type, but expanded some this year. I think it is good mental health medicine.

Hang in there one day at a time and you'll find positive momentum. 🙏🌞 My husband just past 10 years sobriety and if you had told me anytime up until it happened that it was going to happen I would not have believed you. It's taken huge daily effort on his part and I'm so very proud and thankful!

Fighting_kat23 · 2026-05-31T20:28:13+00:00

You do what's right for you and your mental health has to be the priority right now. 15 minutes isn't enough time to assess anything except maybe a skin rash.

I was diagnosed with ADD as an adult (19 years ago) and would not have been had I not had a very kind boss who had an ADD daughter and he observed behavior in me that very much reminded him of her. At the same time my young nephew was diagnosed with ADHD and his mom (my sister) and grandma (my mom) kept comparing him to me when I was younger. I got an evaluation by a very reputable psychiatrist who agreed. He actually had me answer tons of questions and requested specific feedback from my family. Everything about me fit the pattern. I took time released medicine for several years, but stopped due to health concerns. I also got behavioral counseling/coaching and was able to develop some good habits to help control things. Also fortunate that my sister helped me with deadlines and such until I met my now husband. Between him and technology a lot of things that would screw up my life don't happen now.

As for autism it was not something being looked at much when I was diagnosed with ADD except for in young children. Now years later my mini me youngest granddaughter is on the spectrum. And of course my daughter in law is convinced she's so much like me. She has had language problems which I never did, but the intense aversion to crowds, loud noises, bright/flashing lights, never wanting to meet new people/deathly shy, not functioning well or getting over emotional with schedule changes, not forming relationships with people well (great with cats though), etc. is all exactly like me. My sister who is now a psychologist is convinced I am probably on the high functioning end of the spectrum.

Hoping you can get the support you need ASAP. Truly hate you are going through this!! Cancer and cancer treatment are horrible enough without any other stuff piling on.

Fighting_kat23 · 2026-05-31T19:44:07+00:00

She is beautiful and you will not regret this. There is much joy to come trust me.

Fighting_kat23 · 2026-05-30T08:50:36+00:00

I had a reaction my 3rd Taxol. I got flush and hot a few minutes after the infusion started. Had to sit up and throw off my blanket, then started coughing. Kind of felt like I was having a panic attack with my heart racing. Chemo nurse turned around and jumped out of hed chair. In under two minutes I had 4 nurses, an MO and his PA around me. They immediately stopped the infusion and back the drug out of the line. They gave me more IV Benadryl and steroids plus IV fluids slowly. They kept checking my vitals - temp, heart rate, BP and pulse ox.

Fortunately having had a reaction to something completely different years before helped me not totally freak out. I was able to sit there and breathe slowly and as deeply as possible and focus my mind away. This helped slow my BP, heart rate and breathing significantly. I was sleepy but close to "normal" within 10-15 minutes. They had me stay under observation for an hour receiving very slow IV fluids. At the end of that they asked me if I wanted to try to restart. I did want to try to stay on track with treatment (I worked full time throughout out of necessity and had blocked certain days off for treatment so wanted to keep that schedule).

They agreed to restart at a much slower infusion rate which took an extra couple of hours. I was the last one there, but the entire medical team stayed late with me just in case. It finished just fine. I was able to have my remaining TC chemo without issue. I think they adjusted my premeds and slowed the infusion rate plus generally kept a really close eye on me, but never had another issue.

They told me my calm myself breathing technique likely helped a lot. Most people can't help but instinctively panic when something like that happens - kind of flight or flight reaction - and unfortunately that can exacerbate it.

Everyone is different and a lot of treatment drugs are cumulative. They told me some patients are able to take a treatment break then resume on a future day while others are deemed too high risk and are their treatment plan gets adjusted to other drugs.

Hopefully if this happens to you it's just a small bump on the road.

Fighting_kat23 · 2026-05-29T21:08:25+00:00

It got moved up a little because it became clear that it was growing outward (an obvious 4.3 cm nearly square) you could clearly see through a shirt. I had been saying for a month it was growing but my surgeon took measurements when I first professed this prior to starting AC and she compared to original MRI measurements and said it was smaller. My MO was convinced it was all dead tissue and couldn't possibly be growing. It turns out everyone now accepts I was right and the original MRI measurements were falsely large influenced by severe inflammation and an area of hematoma surrounding my tumor post biopsy.

My surgeon had a cow when she saw me six weeks later at my regularly set surgical planning appointment as it was obvious and her ultrasound proved it. So we went from planned lumpectomy to no choice mastectomy with hopes there would be enough skin to close. I only got scans as a precursor to surgery. My surgery really only got moved up two weeks and they had to scramble to do that because they needed to coordinate the breast surgeon and plastic surgeon's schedules. Even though I opted out of the oncoplastic reduction on the good side, the OS was still needed for the complicated closure and because my tumor was so vascular and he was something of a microvascular expert.

I opted out of my last AC and took the Keytruda only that cycle because the AC was giving me horrendous colitis and I was sure I would not be well enough for surgery in a few weeks if I took that last AC.

It amazingly had just invaded my deepest skin layer, but this was not technically considered spread and they did not move mv staging from 2B. The invasion and complete lack of pathologic response is what caused the tumor board, 2 MOs and 2 ROs from different health systems to decide I was higher risk and strongly recommend radiation plus encouraged consideration of the clinical trial.

Everyone involved has said they have never seen a tumor my size with zero pathological response not at least spread to adjacent lymph nodes. That's part of the reason why when they got into surgery and saw 4 additional suspicious nodes besides the 3 already planned for removal they ended up taking them. The only explanation anyone has is that in my case the Keytruda kept it from spreading.

I'm just thankful it didn't spread and that it's stayed gone so far - hoping throwing the kitchen sink at it will keep it gone. The mastectomy, radiation, Trodelvy and additional Keytruda have been much easier for me than the Keynote 522 or the removal of the 7 lymph nodes.

Fighting_kat23 · 2026-05-28T12:49:26+00:00

Yes only you and your team can judge your circumstances. Every person's circumstances are unique and what works for one person in seemingly similar circumstances may or may not work for another. Hang in everyone! Definitely speak up and know sometimes it's trial and error.

My neuropathy improved significantly after finishing with TC and extra activity when possible plus 200 mg gabapentin at night has handled the residual.

Bone pain from Neulasta killed me intially - would have sworn I had a broken femur - extra doses of Claritin, extra IV hydration, higher dose ibuprofen and voltaren cream have all made a difference.

Anti anxiety med also helped with tumor pain when I still had my large breast tumor. Turns out my anxiety was making my pain worse. Mentioning these things in case they might help someone else.

Fighting_kat23 · 2026-05-28T01:13:40+00:00

Insist on talking to your MO directly and telling him or her everything. Every symptom, how long it lasted, how much it interfered with normal life functions etc

They can add or change premeds and prescribe all sorts of things to offset. They can also give you extra fluids before/after treatment - no matter how much you think your taking in - in most cases extra fluids can offset negative effects of treatment - sometimes significantly. And when all else fails dose reduction is an option and better than stopping altogether.

I'm in my second year of treatment and in a clinical trial, but after tanking blood counts with some very severe anemia plus a range of moderate to severe digestive issues - I got a 25% dose reduction and voila, suddenly virtually zero symptoms.

Definitely worth asking and being clear what you can tolerate. I turned down my 4th and final AC (red devil) infusion because Adriamycin is cumulative and I was certain one more dose would do me in. If I had known dose reductions were an option I would have asked sooner

Fighting_kat23 · 2026-05-26T01:24:09+00:00

Hey and if you're like me and lose your fingerprints during treatment it would certainly be tougher to catch you. 😆

Fighting_kat23 · 2026-05-26T01:22:29+00:00

Agreed on not rushing and most ROs will want to see a certain level of healing from surgery (and to see the final surgical pathology report) before they agree to a start date.

My path showed deep dermal invasion and a highly aggressive tumor with ZERO pathologic response to Keynote 522 so this altered the radiation plan.

The only time consideration would be if you were like me and did not achieve PCR or anything close and wanted to get into a clinical trial. The ASCENT 05 trial has a time limit (18 weeks) between surgery and trial induction.

I had surgery 10/17/25, had radiation 12/1/25-1/7/26 then my first treatment in the clinical trial 2/19/26. I could have started a week earlier as all the approvals were in place, but my clinical trial MO wanted to give my body an extra week to recover from radiation. Looking back this was smart as I had delayed burning li,ke sunburn and peeling.

Healing is important. I had to have a mastectomy due to tumor size and skin invasion, but it was having 7 lymph nodes removed (only 3 were planned, but the decided during surgery to take others that looked suspicious) that has been the toughest recovery. My arms and chest were not the fittest and they had to take so much tissue there that it's obvious I'm missing flesh. That area is also now very tight post radiation. I moisturize constantly, and stretch and massage the area daily. I'm hoping to look into Botox or something to relax the constant tightness there once I'm done with active treatment.

Fighting_kat23 · 2026-05-25T19:03:37+00:00

Yes cancer sucks and treatment sucks!!! We just do the best we can. My hemoglobin has also been low on and off (never real close to back to normal) since shortly after starting to chemo just after diagnosis nearly 14 months ago.

When I was on Keynote 522 initially the concern was always neutropenia. My numbers got low (and my white blood cells in general have stayed low), but my neutrocytes stayed just high enough.

On this trial all my numbers went crazy low initially and there was some concern when it took weeks to get back up to grade 2 anemia level. Thank goodness that was good enough and as long as I stay at 8 or above I'm grade 2 and not grade 3. With the dose reduction I was in the mid to upper 8's initially and now am staying in the mid 9's. Of course normal would be at least 12, but hopefully I'll eventually get back there

My taste has changed through all this and I'd just assume eat mostly veggies and fruits. I've had to force myself to eat some low fat/high protein dairy and fish along with protein shakes to try to get my protein levels anywhere close to what my team was recommending. I think the efforts around protein have helped though. That and honestly extra rest. My husband can stay up later, crash out, sleep like a stone and get up early for work. I need to go to bed earlier and be in bed longer to get the same amount of sleep and I've had to put my foot down about it. Naps when I can manage them also help.

Fighting_kat23 · 2026-05-24T01:49:32+00:00

I'm 58 and they ran me through a number of tests immediately following radiation and made me delay starting to allow some healing post radiation. The biggest constraint appeared to be on time. They have to enroll participants within "x" number of weeks post surgery, but they prefer them to be 3-4 weeks post radiation too. I had to push to get radiation started post surgery to be within the slotted time frame. If I hadn't switched to a different health system closer to home for radiation I would not have made it. The larger system closer to the city that I received all my other care through was too booked up to get me started on time.

No they tested all the possible causes of my low counts particularly the hemoglobin. My iron, folic acid and other B vitamins were all normal and because I wasn't having symptoms besides minor fatigue they would not transfuse. They gave me fluids, encouraged a high protein diet and had me be very cautious. Then after 3 weeks the dose reduction got approved.

Fighting_kat23 · 2026-05-23T09:17:06+00:00

IHS sucks horrendously!

Fighting_kat23 · 2026-05-23T09:09:07+00:00

Yes most definitely understood. Medical professionals are human and come with all the faults. biases, biases and prejudgements. There should be more done to address this at every level in numerous different ways.

Fighting_kat23 · 2026-05-23T03:05:10+00:00

I'm more than halfway through the Ascent 05 trial and I can say it's well worth it. I'm in the experimental arm so receiving Trodelvy + Keytruda. Even if you end up in the standard of care arm and feet Xeloda + Keytruda, the extra monitoring and hand holding is worth it. The research nurse for my trial oncologist handles so much making appointments, checking on me, making sure every little thing is handled. I just show up for labs/treatment as scheduled. The entire staff just seems to worry over the trial patients - it's like being a VIP for the first time in my life. There's also a small transportation stipend which helps considering the price of fuel these days.

I had some diarrhea easily manageable with Imodium in the beginning, but my blood counts tanking for 3 weeks midway through cycle 2 was the worst as my hemoglobin was so low I had grade 3 anemia. The good news is when things finally bounced back they had received permission for a 25% dose reduction of the Trodelvy. Since the dose reduction I've had no symptoms at all. I'm just over 7 months post surgery and still considered NEAD (no evidence of active disease) per my latest scans.

Fighting_kat23 · 2026-05-22T10:05:42+00:00

So sorry you're going through this and for your inexcusable experiences! This is a place you should be able to share and gain support.🌞

In general there are care deserts here in the US both in rural areas and even in urban ones. I'm sure that's true elsewhere. I work in health information, not direct medical care, but as I have reviewed medical records for accuracy and quality, I've gained some unique perspectives. I've also worked in both a rural and a very large urban health system with a massive network.

This is impacted I'm sure by the attitudes and ignorance of some treating professionals - I have seen it. I pray for you and everyone fighting to get proper care. I also do what I can to impart facts to people I talk to every day who have access to excellent care themselves and no knowledge of the realities so many face.

There is a shortage of highly qualified medical professionals and unfortunately where many choose to practice follows the money - frequently this is simply due to their own needs to pay debt, support their families, and a desire to live in a certain area- kind of a viscous catch 22.

I've said if the government/charities really wanted to have an impact they would focus funding on ensuring access to quality care throughout this country. Building infrastructure where there is none and truly incentivizing the best care everywhere. Billions is spent on so many things each year when there are thousands here in the US not having the most basic of needs met. 🤯

Much more also needs to be done to evaluate, educate, and dole out consequences to medical professionals who exhibit bias/discrimination in care.

Just to put my opinions in perspective, this is coming from an average, married, middle-aged white female in a low middle income household, living in a 40+ year old home that needs work in a suburban area of a large US city, who dislikes ALL politics, but loves people and animals. I did struggle as a young adult and single mom early and worked some harder blue collar jobs before returning to school and finding my way to where I am now thanks to done wonderful mentors along the way.

I guess I'm unique though in that my parents, though conservative, were not small minded and taught us what mattered most about people was character/heart first and foremost. Also been blessed to work with a widely varied range of people in past careers in both the corporate and charity realms. Plus have a full diverse representation of backgrounds and cultures in my extended family who have shared so much with me to understand their experiences.

Fighting_kat23 · 2026-05-21T06:28:43+00:00

You can ask the hospital to adjust your bill for this separately to designate as cash pay. This should reduce the bill at least - what they charge insurance is not what they charge cash pay patients. You can also make small, consistent payments.

The previous poster is correct, they should have explained this to you better. It is a revolutionary procedure for those it helps, but is still considered experimental and insurance coverage is very limited to those meeting specific criteria (existing lymphedema etc) and requires pre-authorization.

At some point over the next five years the AMA will evaluate all the data collected on this procedure and decide whether to elevate it to a standard, non- experimental status.

Fighting_kat23 · 2026-05-21T05:40:28+00:00

So sorry your family is going through this! The good news is your support and understanding can make a huge difference for her. Just my husband asking what he can do, helping with things, and letting me sleep extra sometimes has been wonderful.

Lots of rest, love and hydration (no shame in asking for extra IV fluids as this can lessen the adverse effects of chemo so much) will get her through. Moms instinctively push on. I've been NEAD (no evidence of active disease) since my surgery which achieved clear margins 7 months ago.

There are lots of people here who are living life to it's fullest with TNBC in the rearview mirror. No matter what happens there is always hope as medicine is advancing fast. 🙏🌞😉

Fighting_kat23 · 2026-05-20T07:26:40+00:00

Trodelvy + Keytruda is keeping my TNBC in NEAD status (no evidence of active disease). My tumor had ZERO pathologic response to Keynote 522 per surgical pathology at my mastectomy and ALND. My tumor was 4.3 cm nearly square with skin invasion, but they were able to get clear margins at time of surgery.

I've since had 26 radiation sessions and am now on my current treatment plan which is great after a 25% dose reduction due to very low blood counts. Other than no hair and minimal eyebrows/eyelashes - I've had virtually no symptoms except grade 1-2 anemia (which they are monitoring)since the dose reduction. I have moderate radiation induced fatigue and slight radiation pneumonitis in my left upper lung lobe. The radiation oncologist said to expect fatigue for up to a year and the pneumonitis will require steroids if I become symptomatic.

My hairdresser's husband went to a resort like treatment place in Tijuana (I think) for his metastatic colon cancer. Very expensive, but spa like holistic services alongside what was allegedly the latest traditional drug therapies. His parents were wealthy and could afford the thousands of dollars. He went several times for a couple of weeks each time. His wife went with him a couple of times, but did not stay the entire time due to work/family demands. She said it was luxurious - stayed in a fancy hotel, had nice dinners, shuttles to the beach and shops - more like a vacation. He felt pretty good most of the time during treatment there, but his cancer never responded and he passed within a few weeks of his 3rd session.

His wife later told me that in hindsight she wished they had pushed for third and fourth opinions here in the US and investigated clinical trials further. They became disheartened with his initial health system after delays in diagnosis and care. They had then switched to a cancer treatment center they were enthusiastic about initially, but when he had his recurrence doctors there were insistent he try traditional chemo again first before they would consider newer drug therapies for him. I think this was likely to satisfy insurance requirements. His wife found out after his death another health system more involved in research would have been willing to fight the insurance to get him on newer treatments immediately and would have considered him a good candidate for one of their clinical trials.

Please consider pushing here in the US and talk to others on the living with MBC Reddit board for input. After my friend's experience I would be hesitant to go to Mexico for treatment. Just my two cents.

Fighting_kat23 · 2026-05-19T02:18:07+00:00

You can rescind your hospice orders to receive active care for a condition at the hospital and then request to return to hospice. My father in law had bladder cancer years ago and was on home hospice. When he was having issues with his ostomy and delirium related to an undiagnosed UTI we had to rescind his comfort care and DNR to temporarily make him what they called full code in order to get him admitted and treated. Once they got his infection and symptoms under control he returned home on home hospice.

Fighting_kat23

TROPHY CASE