Good morning to all! I was diagnosed stage 4 mbc, er+, pr+, her2 low to+, 2 years ago. I also found out last summer I have the PIK3 mutation...not much luck with treatments. So far matastases have remained in bones. Was on Kinjinti, Femara, Faslodex for a few months, then Femara was withdrawn..kep the others till summer 2023, when mutation was found. Insurance refused Piqray and Xeldoda. Was fi ally put on full dose Taxol in Sept 2023 till end of Nov. Restarted at weekly lowered dose of Taxol in Jan 2024 along with Kinjinti and Faslodex. Had PET yesterday, not good...extensive bony progresstion and now, small pericardial effusion. Don't know if effusion is metastatic.I was due for another dose of Taxol today, but I requested a break. Am so weak, neuropathy is awful and was afraid of effect on heart. NP agreed to hold chemo this week. I see my onco a week from today.
My question to all of you, am I making a mistake to take a week off? The tx apparently not working, so just don't see justification in putting my body through it and I really NEED a small break. I am sure he will want to change therapy, which is a whole new conversation.
I have appreciated so much all of you, your knowledge and willing to open and share with others. It is a blessing for sure. God bless all of you in this fight!
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Tuckermom
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I have not been down your road (in terms of medications and variety of mbc) so am not the best one to respond, but I don't want you to go a whole day without a response, so I will share what I know that is relevant. I had never heard of Kajinti. Turns out it is a "biosimilar" of herceptin. Pleural effusion is listed as a side effect - wait, yours is pericardial. That sounds more serious. Jacinti IS rough on your heart.
People take breaks all the time. Sometimes for surgery, or treatment for something else, and just to give your body a break. As you say, it isn't doing the job anyway, so best to let your body recover from these meds.
You are in the US. Strange your insurance refused Pickray when you have the PIQ3 mutation. That is what you need, and instead you are being given stronger/chemo-type meds. And Xeloda? What insurance do you have? Can't your oncologist appeal? Are you seeing a breast oncologist? At a national cancer center? If not, can you get to one?
I would also recommend a second opinion at this point -- perhaps at one of the top breast cancer programs in the US, like Dana Farber in Boston, Sloan Kettering in NJ and NY, and Anderson in Texas. You may be able to get a virtual second opinion if those are too far for you.
Hope you can somehow get on a more appropriate and less toxic treatment when your body has had a respite.
I had Abraxane for 27 weeks and I asked for a week off over the Christmas period. It has no adverse effect on me. In fact doctors will withhold treatment until the wbc is acceptable so they obviously do that knowing it won’t hurt the treatment plan.
If it’s not working the doctor might decide it needs more time but neuropathy is debilitating so I think that’s got to be a consideration for your oncologist.
I think American doctors use three weeks on and one week off but Australian doctors, in Queensland at least, don’t.
It sounds very much like to me you need a second opinion ASAP. The combo of drugs you are on sound like the wrong combos. I am not on the drugs you are as I have no mutations. Piqray for your mutation is one you definitely need. So your insurance won't pay. Have you appealed it? Has your oncologist appealed it? You can also talk to Novartis about this, possiblity get it free or low cost and might even help with your insurance company, here's the link novartis.com/us-en/patients.... I am on Femara (letrozole) which is an anti-hormone. I'm ER+,PR+, Her2- negative and I am on Ibrance. I have mets to lungs, liver and 2 other sites. Not sure why you were taken off that Femara. Sounds like you have had a rough time. Are you on any meds for the pericardial effusion? I am so sorry, Tuckermom that you are going through all this. And if it were me I would take a small break while I looked into a second opinion plus find a way to get the piqray. What explanations does your oncologist give you for all these med changes and when will you find out about the effusion?
Dear Tuckermom, I have exactly the same thoughts as Tammy. When I read your diagnosis, I thought “wow, she has her2 low and Pic3ca which means several good possible targeted therapies.” And so I’m also wondering why you are on chemo drugs. For her2 low, I’m pretty sure the drug of choice is Enhertu, not Kinjinti which seems to be more for early stage her2+ breast cancer. But even before Enhertu, there is Piqray or a newer similar drug called Truqap. You also didn’t mention whether you’ve been on CDK 4-6 inhibitors which are the typical 1st line therapy for ER+. Piqray/Truqap would be second. I would recommend you get a second opinion, as Tammy suggested, from the centers she mentioned, or a similar national cancer center near you where you could perhaps transfer. They have breast oncologists who have extensive experience with the proper sequencing of therapies. Also, your onco should be able to talk with the insurance regarding refusal to support Piqray; that seems very strange. Also, Piqray and other targeted therapy drugs do offer financial assistance. I’ve been getting Piqray for free for a year directly from Novartis.
I think you have many good opportunities with your mbc profile and your insurance should not be denying standard of care drugs. I hope you can see a breast onco who can help you get less toxic therapies. Best wishes to you !
hi, I am from UK but similar diagnosis to you with the same mutation. I have done ibrance, zoladex, letrezole. Bone only then progression to liver, switched to paclitaxel (taxol) November 2023 weekly, I have done 19 sessions but I have had for various reasons had 5 weeks worth of breaks dotted throughout. Onc never has an issue with me needing or choosing to have a week off. Piqray is a possibility for me next based on next scan end of may. I wouldn’t worry too much about a week off, good luck xx
Thank you all for replies. I appreciate your input so much.I do my onco in 1 week to see what he might have planned next. I have not been on a CDK 4-6 inhibitor. And dr did appeal several times on the Piqray and Xeloda. I have united health insurance. They denied Piqray because they said it was only approved for Her2- and I am Her2 low+. Therefore, was deemed medically unnecessary. I dud not elaborate that Novartis did send me a 2 week sample of Piqray which I tried and developed severe diarrhea. But if had been approved, I guess I could try again and better manage side effects? I don't know. I do not remem ber why Xeloda was denied. I will ask dr about the Truqap. Thank you all so much, I am happy I took this week off. I needed it, both mentally and physically. I now have lytic bone lesions, which will leave cottage cheese holes...so am afraid of fractures. Hoping it has not progressed that much....
Thank you all again! Praying for improved health for us all!!!
Your insurance made a mistake. Piqray and the newer drug Truqap are approved for the PIK3CA mutation. I am on a similar drug in a clinical trial called Inavolisib for that same mutation. I would revisit the topic, ask for Truqap ( there is a Truqap forum on Facebook), and definitely get a second opinion. --Trish
How did you find out about the pericardial effusion? I strongly recommend that you have a heart ultrasound and see a cardiologist. Your weakness can be due to the effusion - it puts pressure on your heart and makes it work less efficiently. Your docs should monitor the size of it. The most likely reason for it is mets. The first time l had a pericardial effusion my systemic treatment completely resolved the effusion.If l were you l would ask your doc for an honest opinion about skipping chemo. Most of the time skipping is fine. But here you are not really knowing how well treatments working - so ask the expert and then decide. If the effusion becomes very symptomatic or is moderate in size that is 1-2 cm a thoracic surgeon can consider doing a pericardial window procedure - you want to do this while you are still a good candidate for this surgery that is rigorous, requiring ICU after surgery.
I hope so much that you have no other progession and that the effusion resolves completely. 🌺
Thank you! They found effusion on my PET I had done 2 days ago. It is listed as being a small one. I did not know that the most likely cause is mets...it is a little scary, but I see doc next Tuesday and maybe new treatment will resolve mine too.So sorry you have gone through this...so sorry for all...but I just lean on the Lord for strength, physically, mentally and spiritually and pray He will strengthen and give wisdom to all on this journey.
Ok, and thank you SO much. Doc messaged me that he is going to put me on Enhurtu. Will see how it does and how I tolerate it! Prayers that YOUR heart is now doing well and that treatments are going well!
Thank you for thinking of me.Pretty sure I can't tolerate it in my condition (weaker and more dependent than I ever thought I could be or ever imagine). I went to inpatient hospice last Tuesday for out of controlsymptoms - I have a whole new medical regimen and things better. Planning to go home soon as health care is arranged. Thank you for being here.
every body is different, and response is different. I ve had 3 holidays in 31/2 years on ibrance and anastrozole. 2 were for big dental surgery, where gum healing was a concern. And the other time has a hip replacement.
I experienced “ no progression “, and honestly didn’t feel any different either…
Sounds like we have a similar type. I’m ER+/Her2 low ++ with Pik3ca mutation. I was on :
1) Ibrance / Fulvestrant 12 months
2) Piqray / Fulvestrant 16 months
3) Xeloda 2 months (did nothing)
4) Enhertu 10.5 months !! Loved it.
My scan last week showed progression in the liver so she’s putting me on Kisquali / lextrozole starting in May to test blocking another patjway using a CDK blocker.
I am eligible for Truqap and Fulvestrant which is a new drug for the Pik3A mutation which has shown better management of blood sugar levels over Piqray. My onc just wants to try Kisquali first before going back to a Pik3 inhibitor.
There is also Trodelvy which I am hoping o don’t have to jump on .
Did your oncologist think it was a good idea to take a different drug between Piqray and Truqap to make Truqap more effective? I don’t know how much longer I’ll have on Piqray and we’ll need to choose another drug, one possibility is Truqap. I’m her2- but I have a mutation in the her2 gene so other possibilities may include enhertu or neratinib. I don’t think they have trials/studies for using Truqap after Piqray but I’m certainly interested in trying it.
I belong to the Truqap group on Facebook and many ladies have gone from Piqray to Truqap. My oncologist wants me to try Kisquali and Lextrazole first just to give my body a break before going to anothe pic3 drug. Kisqual is a CDK blocker much like Ibrance and such but she explains it uses a different pathway that we haven’t tried before . Also I’ve never been on lextrozole. If this doesn’t work, it’s onto to Truqap and Fulvestrant and then Trodelvy. Praying !! Best to you as well !!
Hello Adele_Julia!I just got a message from my onco that he will be switching me to Enhurtu, which I see you took and loved! I see him on Tuesday to discuss further, and have echocardiogram scheduled to check effusion. Is intimidating to think of starting a new therapy, but I hope I love it as you did and that it works!!! And I hope for you that the Kisquali and then possible Truqap works WELL for you!!! We are cancer type twins!!! Sending prayers and well wishes....blessings to you! 💕
Best wishes and prayers !! Loved Enhertu. It was the easiest for me in terms of side effects . I only had mild constipation and ZERO hair loss ! Prayers UP for your success.
I also am her2 low and my onc has been treating me as though I were her2+. The drugs that have worked the best for me are the her2 drugs like herceptin and perjeta. My first line 8 years ago was taxol with herceptin & perjeta. After 12 weeks of taxol, I was just on herceptin & perjeta. I had this strange side effect from the perjeta that involved sunburn like itchiness under my skin (it was quite painful) so we stopped the perjeta but I stayed on either herceptin + perjeta and tamoxifen or herceptin and tamoxifen for almost 5 years. I am currently on Enhertu for about 9 months.
Yes, you are right. I am sorry, I had forgotten that. I was originally treated with Xgeva for months, until I started having some jaw issues/pain. So doc took me off.He told me at last appointment that he wanted to try it again, so may restart. A previous PET had listed some activity in my mandible, jawbone, so achy feeling may have been from that...
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