Unfortunately things are going downhill
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Kandy,
I wish I had better words than "I'm sorry". For as much as this is unwelcome news, take time to be upset but then move on to the options that are out there. No guarantees for any of us, but downhills can reverse direction. Much love to you
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Kandy, progression just sucks (as you know). I have no words of wisdom except "hang in there!" Have a hug. Have several. . .
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Kandy - a few thoughts.
First, if the new stuff is PR- it will often mean that you are no longer responsive to hormonals. My oncologist said that the ER seems to need the PR to work, so when the PR receptor turns off many people become resistant to hormonals. It's not surprising that hormonal treatments are failing you.
Ibrance was inneffective as a monotherapy in clinical trials. It may only work with A/I or faslodex. So if the hormonals aren't work, Ibrance may NOT be the way to go.
Bestbird's guide discusses fourth line hormonals, including estradiol (high dose estrogen) which used to be a common treatment. It can have the added benefit of resensitizing you to hormonals.
However, there is a lot to be said for chemo when the cancer is moving quickly. Chemo knocks the pants of fast growing cancer. It is exactly what it is designed to do. (Hormonals, on the other hand, rarely control fast growing cancer even if it is ER+PR+).
Chemo can also resensitize cancer to hormonal treatment. People have cycled back and forth between hormonals and chemo for years.
There are a lot of interesting clinical trials with immunotherapy and other treatments. If you are interested in my short list, PM me. I am in a similar boat ... originally ER+PR+ but slowly losing my PR's which will probably make me effectively triple negative at some point. Soon I too will be grinding my way through chemo and immunotherapy.
But I don't think this is the beginning of the end. You just need a different treatment because you have different cancer now. There a like 9 lines of effective chemos so you have a ways to go on just chemo and then there are other options ...
Even with all these treatment options, progression triggers the sense of loss. It seems we get to relive the original diagnosis again and the only way through it is through it. Bits of your life, your plans, all get taken away with this disease. It's not fair that it should happened to you. I would make every effort to feel all the anger and crud because otherwise you will just carry it with you.
Hugs, healing and prayers. Try to get outside for a walk.
>Z<
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Hi Kandy,
Aack, this is the worst time, when everything is in a rush and you have to sort between the most critical options so quickly and are terrified and depressed at the same time..
The PR gene gets turned on by ER, so when PR is low or no expression, it means ER activity in the tumor cells is weak. But they still may respond to AIs, although not as strongly estrogen-driven cells. However, the cells are now more sensitive to chemo and to immunotherapy than ER+/PR+ cells. They are also more sensitive to Ibrance! I have ER+/PR-/Her2-, but am responding to Femara/Ibrance. In your situation I would definitely take the chemo, but maybe to to Faslodex/Ibrance after the chemo.
Can you get into a trial with Abraxane and immunotherapy? For triple negative BCs, immuno alone was giving only 19% response, but in combination with checkpoint inhibitors like Atezo, that jumps way up to 70-75%!
But most of the ongoing trials are only for triple negative, so if you do have Abraxane alone, consider a clinical trial for the next step, such as
1- Here they combine immuno with HDAC inhibitor, in pre-clinical studies, this drug combination worked best (out of 90 drugs they tried)
https://clinicaltrials.gov/ct2/show/NCT02395627
2- T-cell adoptive cell therapy, where your best cancer-fighting T cells are engineered to go after your tumor. Amazing stuff, as soon as things really start heading south for me, I'm hoping to try for this one:
https://www.cancer.gov/about-cancer/treatment/clin...
Best of luck, we are all with you!! Kathy
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I'm so sorry to hear that things have changed so quickly, Kandy, but I agree with those who feel Abraxane (or maybe Xeloda?) might be a better (faster) shot right now than an Ibrance combo, which you can always go back to in the future, once you get things under control again.
Just know we are all praying that you get on something to stem the progression and turn things around quickly, which I totally believe will happen! (((Hugs))) & many prayers, Deanna
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I am so sorry to hear of your news, and you've received some excellent suggestions. One additional thought might be to have your tumor biopsied for Androgen Receptivity (AR). The test can be done on your previously-tested tumor so you do not need a fresh biopsy. If you are AR+ (as is most bc) then you could be a candidate for a clinical trial that targets AR in much the same way that currently hormonal therapy targets ER.
And as zarovka mentioned, counterintuitive as it may sound, estradiol can be an effective therapy in and of itself and for re-sensitizing the cancer to ER hormonal therapy, and it's FDA-approved.
Wishing you an excellent outcome, whatever you decide!
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Once again I want to thank all of you, y'all are a wealth of knowledge and the support is unbelievable. I have decided t go ahead and let them start chemo, first treatment is Tuesday. I feel like this is a race against time and I don't have time for something else to work at this point. But, after I get this bet into control where I have more time to think and research my possibilities I will be looking into what my other options are. Thanks Bestbird, I will definitely inquire about having the androgen tested. I'm definitely apprehensive about having this chemo. I was very allergic to taxol and taxotere but my MO says this is taxol but packaged differently. Pray that it goes well, I was anaphylactic shock with taxol. Looks like they can't get my port in till after my first chemo. Thanks to each and everyone for all the suggestions and the loving support. Y'all are awesome
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Kandy, it's "packaged differently" because it's actually missing solvent ingredients that are in Taxol, and those are what cause allergic reactions to Taxol or Taxotere for most patients. http://www.breastcancer.org/research-news/abraxane...
From that article: Taxol uses a solvent to dissolve its main ingredients so the medicine can enter the bloodstream. These solvents can make Taxol harder to tolerate while being given. Usually women take medicine before receiving Taxol to minimize any reactions to the solvents. Abraxane doesn't use a solvent, which can make it easier to tolerate and also means that women don't need to take medicine before receiving it.
You should be good!
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Thanks dlb823
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Kandy, You will be in my thoughts on Tuesday. I am sending you good vibes so that all goes smoothly. We will all be there in spirit to support you.
((Hugs)), Lynne
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Just curious if all women that get Abraxane lose their hair? Anyone know? Does anyone else have mets to the adrenal gland
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Kandy, I'm right there in the boat with you. Solidly NED for three years, and now suddenly I have loads of new mets all throughout my skeleton, and possibly in some lymph nodes for the first time in ten years. This is my fifth progression. These wallops of bad news definitely do not get easier. I spent all last week pretending to be fine but mentally arranging my absence, so to speak. Yuck on that.
I just started Ibrance today. Been in major progression depression for a couple of weeks, but I think I can feel my spirit beginning to rally and reach for my cape again. Grab yours and shake it out and let's get ourselves back in the sunshine, sister.
You've gotten a lot of good advice and support here, from women who have BTDT and are still alive to tell the tale. I am betting that you and I will still be here a year from now. I say to myself every morning of the world, "Hey, looks like I'm not gonna die today!" You're not dying today, either. Spring and summer are coming so let's live for that.
Hugs and prayers and loads of empathy.
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Kandy,I'm sorry you have to go through chemo. That sucks! But it's good stuff and should knock the crap out of the cancer. I'm thinking good thoughts for you for next week. Big hug 🤗!
Stefanie
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Kandy - I don't have mets to my adrenals, but I can imagine that disturbing that gland can effect energy levels and mood. If nothing else, consider that a piece of the depression and stress is "not you" but some kind of adrenal disruption. I am no expert in this but there are people who can test and fix adrenal function. Not that you needed more to do ...
Good luck with the chemo. An allergic response is unlikely with the new generation stuff. You may find yourself NED soon and more than ready to ditch this worry and get back to your life.
>Z<
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Thanks Z, you are a wealth of knowledge. I so appreciate everyone on these boards.
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Will be thinking of you on Tuesday Kandy - our best wishes for a smooth infusion without any significant side-effects.
Amy
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Kandy, I just now came across this thread with your news and wanted to let you know I will keep you lifted in prayer. I hope all goes well with the chemo on Tuesday. In the meantime, please treat yourself to some extra tlc and self care. It is normal to want to tie up some loose ends for others but all those things take care of themselves, so don't get worn out trying to cover all the bases. Good enough can be good enough. It is okay to put yourself and your needs first. Many hugs to you.
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kandy. Just reading this. Wanted to offer my prayers. Hoping it's not the end for you but rather you've started a tx that's really going to do its job. Hope IV chemo is treating you well. Hugs0
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Kandy, you have really been through a ride the last few years. Things can go south quickly but can just as quickly turn for the better. Sometimes, the quicker the progression, the quicker the results on the new med. I have experienced that. I hope this new treatment kicks all those cancer cells to the curb.
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Kandy, along with everything else, I too have mets on my adrenals. My energy and moods are all over the place, but that's just par for the course. Yes, things can indeed turn on a dime. The advice you've been given by Z and others is very sound. No, I don't think this is the end yet. The MOs still have several more arrows in the quiver.
Just remember, we're all here with you on this roller coaster ride.
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Kandy, just wanted to say good luck with the chemo. You have had many good months followed by a couple of not-so-good ones. I believe more good months will come again. Duke is one of the participating hospitals in the androgen drug tria, according to my MO. Plenty of treatment options, and here, you have plenty of well wishes and encouragement.
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Good luck Kandy. While you have a lot of yucky stuff on your plate, you have more of the good stuff (that precious grandbaby and your lovely DD). You've just been kicked in the teeth and remember that feeling all too recently. Rooting for you.
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Kandy, I don't have much to add to all this wealth of knowledge and support. Just want to say I'm sorry you have yet another thing to deal with so shortly after everything else this past 18 months. I do think these ladies are correct that you still have a bunch of options and lots of time left. So many here have been doing the roller coaster for years and end up back on top for long stretches. I'll be thinking of you Tuesday and pray you finally get a long break from bad news.
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Oh Kandy, I'm so sorry to hear this news. I haven't had time to read through all of the responses yet to see if this has been suggested already, but could the one liver met be removed, either through surgery or ablation? Maybe that would give you more time to figure out if a treatment is working on the bone mets? In any case, I hope you are able to find something that works well soon. You've been through so much and you deserve lots of quality time to make memories with little Harper.
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Hi Kandy, I am just popping in to let you know that I am thinking about you today as you begin your new round of treatment. (((Hugs))).
Lynne.
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Hi Kandy - thinking of you this week as you start chemo. I am working on writing up my roadmap as promised but delayed because I am helping my daughter study for her spelling bee on Wednesday. Someday Harper will need your help to grind through lists of spelling words so double down and get through that chemo!
>Z<
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Chemo went well today. They had a hard time getting IV access but after that it was smooth sailing. They did give me detramethasone IV first, just to make sure I didn't have a reaction since my history isn't great. But there was no issues. The PA said that everyone on it has thinning hair but not everyone loses it completely. So I am really hoping I will be in that group. A special thanks to everyone here for all of the support. A really special thanks to TarheelMichelle, she kept me entertained during the whole 4 hour experience with special text messages. TarheelMichelle, you were definitely the angel in my pocket today. Wishing everyone the best.
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Good report, Kandy. Thank you for keeping us in your loop!
Hoping you continue to cruise through chemo!
Tina
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Hey Kandy, happy to hear all went well today!
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Dear Kandy, I hope you get a restful nights sleep and have sweet dreams tonight. You are in my prayers.
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