u/ElKat0315

Lately it’s been getting harder and harder for me to find rides to my chemo appointments. I think most people do not want to sit and wait for a day of 6+ hours of appointments. I get it. And to add insult to injury, at my next chemo appointment there is a tentative order for me to have a blood transfusion so I will be there for probably 12 hours or more depending how many units I need. No one is going to want to sit through that. Does anyone use ride shares or have any other ideas? I have commercial insurance. I am in Arizona.

Hi everyone, had a question. For those with mTNBC that were on Trodelvy. What did they switch you to after showing progression? I looked online but never find much info about it. Just trying to be proactive and gather info to discuss with my medical team should I need to. Not trying to be negative, I am showing signs that my pleural effusion is coming back and I have been having a lot of back pain lately. Just finished radiation on my lumbar spine and sacrum and SRS on my brain lesions this week. I have a Spine MRI Monday so I guess that will confirm if I am still stable or not. Any info is appreciated. I have only need on Trodelvy since mid April so it would really suck if it stopped working already.

Hi all, I met with my radiation oncologist today to go over the results of the 7T brain MRI. Trodelvy unfortunately did not help in shrinking anything in the brain as well as it has done in the rest of my body. He said I have 4 Mets that showed on the scan. All under 4mm. He said that this is highly treatable and we are going with SRS one session. He also said that because I have mTNBC that there is a 50/50 chance more brain Mets could show up in the future. He explained the difference between srs and whole brain and I would much rather not have whole brain so I am choosing to go with SRS especially since I do not have any neurological symptoms at this point. I do have to say that I am nervous and a bit sad that this monster has now invaded my brain. I was wondering about others experience with SRS to the brain and what side effects you experienced? Looking for a little positivity right now I guess.

So I haven’t posted in a while. As always I am super confused and feel like i am never at a good place with all of this. I started Trodelvy mid April ( after failed first line and failed trial) and with my last CT, a couple of weeks ago, my oncologist had all good things to say. She was super excited and happy for me. She said everything is either stable or shrinking in lungs, liver and spine and there is no new cancer anywhere on the CT. I was super stoked of course. Fast forward to yesterday’s brain MRI. My last one was in May, and showed two small lesions. 3mm and 7mm. The larger one being inconclusive for actual brain met. That was a regular MRI. Yesterday I had a 7T MRI, which I was told is a super sensitive MRI and more detailed than a regular MRI. I got results today that shows the 3mm brain met is now 4mm and the 7mm still same and still inconclusive along with a couple more small ones that were very tiny less that 2mm punctuate. I’m wondering if this was already there and showing up becuase of the different MRI? Not sure if anyone has experience with 7T MRI and differing results or readings? Also has anyone else experienced great results systemically and not in the brain? I am already set to meet with my Radiology oncologist on Monday and neurosurgeon. I am already scheduled for SIM. I don’t have any symptoms so I guess that is a small win. I’m really sad. My good news is always short lived. And I’m scared to ask the questions. My prognosis and how much time I have left. I know once it’s in the brain it changes everything. I don’t know what’s going to happen moving forward. The trodelvy seems like it is helping everywhere else. I’m just sad to have to tell my family all this after giving them the other good news just last week. I guess just looking for stories of hope or someone to talk me off the ledge. This really sucks.

I came up to Flagstaff for a wedding this weekend. The elevation here is 7000 feet. I have lung Mets and pleural Mets that i believe have been responding well to treatment. Only basing that off my last mri that showed some shrinkage on the pleural met and also the fact that I have not had to have any more thoracentesis since April and not much fluid accumulation also based off of the mri. I have been checking my spO2 with the pulse ox and it’s around 94-95 at rest. My question is has anyone with lung mets traveled to higher elevation and had fluid buildup or any complications? I will only be here until Sunday morning. I also did bring my portable concentrator just in case but hoping I won’t need it. I’ve been off oxygen for a while, have not needed it thankfully. I know I probably should have asked my onco first but I just forgot to uuuuuughhh The thought of another possible thoracentesis makes me shudder and I don’t want this to ruin the festivities :(

So I told myself I wasn’t going to look at them in the portal and have a good weekend but of course I couldn’t help myself. Now I can’t sleep. And all I am is confused. I am trying to shorten it and added some of the report parts in. I’m always in need of hope and positive stories but I’m so tired of all of this that I don’t even know how to feel about these scans and reports at this point. I’m not scared. I’m not mad. I’m not sad. I have no feelings. Literally NO FEELINGS…….

The brain MRI showed two new small lesions 3mm and 7mm in the left frontal region, which are suspicious for metastases. The 7mm lesion on the report said that it was cystic and looked like it had signs of prior bleeding and said not typical? Thankfully I’m not or haven’t had any symptoms, not even headaches. My brain was clear previously.

The spine MRI showed mixed picture. There is progression in bone metastases in the thoracic spine (T4 and T7) and lumbar spine and pelvis, including the sacrum and left pelvic bone.
Specifically New metastases in:
T4 (mid-upper spine)
T7 (mid spine)
Existing metastasis growing:
L4 vertebra (lower spine)
Pelvis:
Growth in:
Right sacral ala (tailbone/upper pelvis)
Left posterior iliac bone (pelvic bone)
Sacral lesion may be starting to:
Affect nearby nerve openings (S1–S2 region)

I have some stable areas, specifically
T5, T6, T10, T11 spine lesions → unchanged
Small muscle lesion near T6 → stable
Some prior spine disease remains stable after treatment
One lesion in the chest near the spine has decreased in size,
Chest/spine-area lesion near T9:
Shrunk from 49 × 30 mm → 36 × 19 mm

So basically I have areas that have progressed, areas that are stable, aaaaaaaand areas of improvement. Wtf is even happening? I just started the trodelvy around 6-7 weeks ago almost finished with the second cycle so I haven’t been on it long. I know it takes time to work. I know that the last mri that I had was in December and a lot has happened since then treatment wise. Has anyone had this happen with so many mixed results? On Trodelvy? I hope my onco doesn’t give up on me. I don’t even know what to ask my onco at this point, if she’ll want to change treatment or add radiation? And the brain mri results. I know 3mm and 7mm is small but this monster cancer is now all over my body. My whole spine pretty much except my neck, my pelvis, my sacrum, my lungs, my LIVER, and now my BRAIN. And that’s only the parts we know about. I am numb. I don’t know how to feel. I can’t even cry. My back pain has been increasing which also sucks. So I was kind of bracing myself for some bad news. I know when I post here, all of you amazing people always know how to redirect me to a better mindset. Sorry for the long post and long rant. Still holding on to hope friends.