bumped up moms scans

[Flower1513]

So I had shared that her markers had went up last week. When she had the progression in July she also had a plural effusion. Which she’s had drained only twice in 6 months. But her ribs have started being sore. So she goes into tomorrow for ultra sound to see if the fluid has built back up. So her onc I guess decided it was also worth bumping up her scans up too. She started Xeloda on Nov 15th so she will have been on it 11 weeks total time . I guess that’s long enough to see if it’s working??? I guess her onc is now questioning if it’s working ? At our last meeting they said enhertu after xeloda. She’s been on ibrance /femara 2 years 9 months. Anfintor / Faslodex only like 6 or 7 weeks. And now Xeloda . We are trying to get her in for a second opinion at Duke also. Have any of you whipped thru the meds like this and found something to work?

[Fiercefighter13]

Hi there, you guys have had a bumpy ride these last few weeks, I'm so sorry. Does your mom have and PIK13 mutation? If so, ask about Truqap with Faslodex. If your mom has an ESR1 mutation, then ask about Elacestrant. The latter would be very easy to tolerate compared to all else. Both have excellent track records after progression. You and your mom are in my thoughts and prayers.

[Flower1513 in reply to Fiercefighter13]

They tested the fluid in the lungs that was cancer cells and according to that she was still ER /PR positive and her 2 low . All her blood work is excellent on Xeloda and she feels good. She goes today for an ultrasound to see if she does have more fluid on her lung . And next week for new scans. I’m praying we are pleasantly surprised with the scans.

[AvidBooklover in reply to Flower1513]

Your mom is so lucky to have you helping her. Has she had genetic testing done on her tumor? The primary one. That can indicate treatment plans. This will tell more than ER+. I have the PIK13 mutation, as an example. There are protocols just for that.

[Flower1513 in reply to AvidBooklover]

Yes they tested the primary tumor back in 2020 . I’m not sure what all they have tested since progression this past summer. When I read the reports from this summer is showing no mutations . Just her2low .

[AvidBooklover in reply to Flower1513]

The primary tissue etc is what they need, but may need to test it for mutations if not done already.

[Flower1513 in reply to AvidBooklover]

Is the genetic testing covered by insurance or is it something we would have to ask for and pay out of packet.? When she had progression in July they did do testing but I don’t know what kind of testing. And no biopsy of liver. They were able to take the fluid from the lung and test it. Thanks so much. They never ask us do we want any kind of testing or anything? Just if meds don’t work on to the next. She was diagnosed with mbc in the summer of 2020 . She’s now on her third line treatment . Scans are Thursday to see if Xeloda is working or not. In the meantime last week she had to get more fluid drained off lung. So we don’t know . Thank you❤️

[AvidBooklover in reply to Flower1513]

Mine was covered both times. First was in 2012 when they ran Oncotype. Second in 2019 when I was MBC. If she was newly diagnosed in 2020 with MBC they may have done it then. Ask for a copy of the report. Where is she being treated? Where do you live.

[Shafight]

yes. I was on faslodex and I ibrance for a year. Then aromasin and affinitor which I was allergic to and took me 5 months to get over it

Then Kisqali only for 3 months. Now I’m on xeloda and all has been well for 7 months. I wish your mother well!!!

[sancarlos]

I’m camping on the beach in Mexico right now, which I wouldn’t be able to do on Ibrance. Not sure what to tell you, Ibrance worked for me than my white count went too low.

Good luck! We are all explorers, paving the way for the next generation of cancer survivors ❤️

[NPmary]

Sounds like recurrent pleural effusion could be a problem. Placement of a pleural catheter (trade name pleur-x) could bring her lessening of symptoms/increased quality of life. I will have the pleur-x placed this week. It's easy to google info on this. Wish you and your mom the best. Try to get support for yourself too, the less anxious you are the better she will be too.🌺

[DianaTrapani]

sometimes we find our bodies cannot tolerate or respond to drugs and we do seem to zip through them quickly. I’m on Fulvestrany/Faslodex monthly. I tried Kisqali then I eprance but developed a bad cough/pneumonitis. That means I can’t take Verzenio or Afinitor, as they have the same side effect. This means, I’ve quickly skipped through the first four line of treatment in just six months. Ouch. Next will be oral chemo of Xeloda.

I hope your Mom does well on her next treatment. And blessings to you both.