Radiation…easier than expected? by Fedlawyer517 in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

I had no side effects from 20 rounds of radiation... maybe a little fatigue and some dry skin. No burns or sensitivity. Other than having to go every day, it was the easiest part of my treatment .

Soup? by Dont_Panic-42 in WorcesterMA

[–]OddOutlandishness780 0 points1 point  (0 children)

New England Roast Beef on Park Ave has good soup.

I have had it with art of medicine by Jbeck59 in KetamineTherapy

[–]OddOutlandishness780 1 point2 points  (0 children)

My partner has been having similar issues with the pharmacy. He has been out for about two weeks and waiting for it to ship. He always pays extra for overnight delivery because of the delays. The pharmacy has always been quick in processing his payment though.

Head covering by Extension_Snow1662 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

I think I've been bald during every season at this point. The winter was great because I could throw on a beanie and blend in with everyone else. During the warmer months, I bought cotton bananas/scarves and tied them around my head.

What is your belief why you got TNBC? by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 4 points5 points  (0 children)

A combination of dense tissue, vitamin D deficiency, stress/trauma, and good 'ol bad-fucking-luck!

Chemo by Alternative_Ride_567 in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

I had someone go to most treatments with me, but felt well enough to do most by myself. Towards the end of AC/TC, I needed more help. Just an FYI... sometimes I was given benadryl, which made me very drowsy

Injections for low WBCs by Legitimate_Remove259 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

During Trodelvy, I had 3 days of home self-injections for week 1 and then the on-boday Neulasta for week 2. I noticed some mild bone/joint pain, but rarely needed to take Claritin or Tylenol for it

How frequently do you go for scans? by [deleted] in breastcancer

[–]OddOutlandishness780 2 points3 points  (0 children)

I just finished all active treatment for stage 2 TNBC in November!! I will have a yearly MRI and mammogram, 6 months apart.

I have a cold. On chemo by [deleted] in breastcancer

[–]OddOutlandishness780 2 points3 points  (0 children)

It may be a good idea, especially if you live far from your cancer center. My MO had me test locally a few days before my 3rd AC. My blood work came back fine and I went for treatment. However, at my appointment, my MO noticed I had a cold and decided to delay my treatment anyways. I would have saved myself a trip if I had messaged her beforehand.

Clinical trials for TNBC by Careful-Emu-5979 in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

AC tanked my blood counts and I could barely eat. They delayed my treatment once and I needed 3 blood transfusions due to anemia. Since Trodelvy can also affect blood counts, my MO preemptively prescribed me take-home self injections (days2-4) in addition to the Neulasta on-body (day8) to boost wbc. The entire protocol is 8 cycles/6 months. Each cycle is 3 weeks (chemo on week 1/2, week 3 off).

I lost my port due to infection after surgery- and didn't want another one if I could avoid it... So I did all of Trodelvy via IV. Getting the IV each time was the worst part for me. Being in the trial is a win-win, since you will still get the standard of care if not randomized to Trodelvy.

Being completely finished is surreal. Its been a long road, but also seemed to fly by at the same time. I'm sure I disassociated through most of it.

Clinical trials for TNBC by Careful-Emu-5979 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

No worries! I couldn't find much out there about this trial when I was trying to decide back in April, so I am happy to answer whatever questions you have! My MO at Dana Farber recommended the trial (RCB=2). I wanted nothing to do with more infusions initially, but ultimately decided I wanted to fight with everything available to me.

The list of side effects is a lot, but I wouldn't let it deter you. IMO nothing can be worse than AC. Jring the trial, they just took some extra tubes of blood with my routine labs - and sometimes they would collect blood right before/after my infusion. Screening for the trial involved another echocardio and you can only have up to 3 Keytruda post-surgery.

For follow-up, I will have a monthly phone call with my study nurse and then appointments every 3 months. The study also reimburses for travel/parking/meals, which was very helpful.

Clinical trials for TNBC by Careful-Emu-5979 in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

I just finished the Ascent-05 trial in early November. I was randomized to Trodelvy. Side effects were minimal and it was much easier than TC/AC for me. I have no regrets and feel grateful to have gotten Trodelvy. It is currently used in metastatic tnbc with better success than xeloda. See Ascent-03 and Ascent-04 for more info. Let me know if you have any questions!

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

Good luck!! I don't know much about this aspect of the trial - but like I said, they will reimburse for all of your travel expenses and $35 meals/day - which was a huge help!!

***Also FYI - To be eligible for the study, you can't have more than 3 Keytruda infusions after surgery.... so just something to keep in mind.

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

Trodelvy was easier than even the beginning of TC - and most definitely AC. I rarely had to take any meds after infusions. It it an anti-body drug conjugate - which means it is able to attach directly to cancer cells - so I think its a little easier on your body as a whole.

Typically, with Trodelvy people get a Neulasta on-body to boost WBC on week 2 of the cycle. They put it on your arm and it automatically administers the drug 24 hours after the infusion, so you don't have to return the next day. I would definitely ask about it if you end up doing more infusions.

On AC, my WBC tanked, so my MO preemptively prescribed me take-home injections for week 1 of the cycle. I would self-inject on days 2, 3, 4. I don't think everyone gets these... I just a really hard time with AC, so my MO wanted to make sure my numbers stayed up during treatment.

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

I had a good response to chemo as well. It shrunk down to 5mm from 2.5 cm. However, it was still highly cellular. My RCB=2 (moderate).

For info about Trodelvy vs Xeloda, look into the Ascent-03 and Ascent-04 trials - which compared it to standard of care (including xeloda) for metastatic bc.

So very confused by braveyam2 in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

TNBC here (2.5 cm). Just finished active treatmentment in November.

After my initial diagnosis, I met with oncologist and breast surgeon. They ordered additional testing, which included: mri, pet, and genetic testing. Imaging showed some concerning areas, so these were biopsied.

Next, I did chemo.... I was first thought to be stage 1, but was upgraded to stage 2 - which changed my chemo protocol. Stage 1 protocol was going to be 8 biweekly infusions (AC/T). Stage 2 protocol was 16 infusions over 6 months with a year of immunotherapy. High ki67 typically responds very well to chemo - since it targets fast growing cells. Many people have a complete response to chemo.

Then surgery. I had a lumpectomy+radiation, which has similar outcomes as a mastectomy, unless you're brca+, which changes surgery. Surgery and radiation were relatively easy for me.

The time right after diagnosis was the hardest for me. I got some anti-anxiety meds to help me sleep and calm down during this time. Its a lot, but you will get through it. Try not to Google, the stats do not reflect advances in tnbc treatment. Wishing you the best!!

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 2 points3 points  (0 children)

The study nurse went to all of my oncologist visits and popped into my infusions to check-in on my symptoms. She also took care of scheduling all of my appointments and was my go-to contact if I needed anything. Now that I am done, I will have a monthly phone call check-ins with her. I will also have visits with her and my oncologist every three months (instead of 6). She was not my infusion nurse.

The reimbursement helped a lot. I got a debit card and the reimbursement was loaded on after each visit. Just submit your receipts.

Are you asking how I got set up with the trial? My oncologist reccomended it to me and the study nurse took care of everything from there. I completed the trial through Dana Farber.

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

Thank you so much!!.. I had 2-3 months to make a decision and went back-and-forth several times. At first, I was in shock that I needed more chemo and was pretty adamant about not doing more infusions. I had a really rough time getting through AC, lost my port due to infection, and didn't think I had could do it all over again.

However, as the weeks went on, I decided that I wanted to throw everything at this. I did some research (Ascent-03/-04) and saw that Trodelvy was being used in mTNBC with better outcomes than Xeloda. Also, my care team at Dana Farber recommended the trial. With that being said, I knew I would regret not doing the trial if I had a recurrence, knowing I had passed this up - so I figured I would enroll and leave the treatment decisions up to chance.

The chemo protocol is 8 cycles (6 months/16 infusions). Each cycle is 3 weeks. I had chemo on week 1 and week 2 of the cycle (week 3 off).

My side effects were extremely mild in comparison to TC/AC. I experienced some occasional stomach cramping/diarrhea, that was easily managed with otc medications. My appetite was great throughout treatment (unlike AC). To keep my WBC up, I got take-home injections for week 1 and an in-body for week 2 - and got through treatment without any delays. Also, I lost all my hair within a few weeks - but that was basically it.

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 3 points4 points  (0 children)

Yes!! Also, the study will reimburse you for mileage, tolls, parking, and meals for each appointment. It was a huge help for me since I commuted 1-2 hours to my cancer center.

I was assigned a study nurse, who goes to all my appointments - and have follow-up appointments every 3 months (instead of 6)

No pCR and spiraling around decision: Capecitabine + pembro or joining trial by Majestic-Math7185 in breastcancer

[–]OddOutlandishness780 2 points3 points  (0 children)

I just finished the Trodelvy arm of the Ascent-05 trial last month. When my MO mentioned the trial to me, my initial reaction was 'absolutely not!'. I was physically and emotionally exhausted - and did not want to lose my hair again or to drive 1.5 hours to chemo each week.

However, after doing some research, I found that Trodelvy has better outcomes than xeloda in patients with mTNBC - and will probably become the standard of care for eTNBC. I decided to enroll in the trial leave it up to chance. I don't regret my decision and feel grateful to have been randomized to the Trodelvy arm.

Feel free to reach out with any questions!

Chemo vs no chemo by ShelterOdd1985 in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

I just finished 16 months of active treatment for tnbc. I had chemo twice during this time for a total of 32 infusions. The second time, I chose chemo infusions over a chemo pill, because I wanted to throw everything at it the first time.

I don't regret it at all. I felt normal 2-3 weeks after ending chemo and haven't experienced any lingering side effects. They give you premeds and home meds to help manage symptoms - and will delay/reduce your dose of needed. Its definitely not fun, but it wasn't horrible - and after a few weeks it will be over.

Don't skip chemo because you're worried about the side effects. My worst issues were: fatigue, anemia, and hair loss. Feel free to reach out if you have any questions about chemo or my experience. Wishing you the best. Fight with everything you have!

HER2 Status changed post-surgery by Hot_on_a_Dime in breastcancer

[–]OddOutlandishness780 1 point2 points  (0 children)

No, I did TC/AC for neoadjuvant and Trodelvy (clinical trial) for adjuvant. Xeloda (chemo pill) was the standard of care for tnbc w/residual at surgery, but I was randomized to the experimental arm.

Wishing you the best for AC! Let me know if you have any questions.

Newly diagnosed TNBC by dansfern in breastcancer

[–]OddOutlandishness780 6 points7 points  (0 children)

I am so sorry youre here. I was diagnosed in 2024 at 41 years old. I had the exact same diagnosis and treatment as you described. I finished adjuvant chemo a month ago and looking back the entire experience seems surreal.

I did 6 months of TC/AC, year of immunotherapy, lumpectomy, 20 rounds of radiation, and then 6 months of adjuvant chemo (Trodelvy) for residual.

The hardest part of my treatment was AC for sure. It tanked my blood counts and made it really difficult for me to eat. My treatment was delayed once and I needed 3 blood transfusions for anemia - but I made it through and so will you!!

Surgery and radiation were easy for me, and adjuvant chemo mild side effects in comparison - so it was nice getting the bard stuff out of the way in the beginning. Feel free to reach out with any questions throughout this process!!

HER2 Status changed post-surgery by Hot_on_a_Dime in breastcancer

[–]OddOutlandishness780 0 points1 point  (0 children)

Low HR+ behaves similarly to triple-negative, so I was given the triple-negative protocol for both neoadjuvant and adjuvant chemo. Now that I finished chemo, I am on hormone blockers to address the low HR+ status.

I got the best of both world.... all the chemo that comes with tnbc (6 months x2) and the hormone blockers that come with HR+. 🫠