Faslodex + Pablociclib(Ibrance) treatment combination -
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What we are planning to discuss with the MO (@ Stanford) are the following :
1. Understand how bone mets are stable and understand what it means for current Ibrance + Letrozole combination.
2. Ask the MO about efficacy of functional testing.
3. Arrange a liver biopsy with enough material for both genomic testing (Foundation One) and functional testing (Rational).
4. Understand next line hormonal therapy
5. Discuss chemo option and see if we can postpone it for later.
6. Understand current immunotherapy options.
We also will take second opinion from UCSF and then put all the data together to take a decision on next steps.
Z - thanks for your good wishes and I sincerely hope that next week we are able to nail down the correct next lien of treatment. I may send you a direct message to exchange our understanding of current state of immunotherapy treatments for both HR+ and TN BC.
As always, I will keep everyone posted. We are going all we can, just need a little help from God.
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LMWL -
Thank you so much for sharing your thinking process. I will be in the same shoes eventually.
I would be interested in whether the ESR1 gene mutation, which would indicate A/I resistance, is relevant to the decision process. It's part of genomic testing, but it's a specific issue that may be relevant even if a massive gene sequencing project is not appropriate at this time.
If there is anything I can research for you or anything you want to talk through by phone or email I am here. These decisions are very important but once the research is done, listen for the Spirit. You will feel a sense of peace when you are on the right track.
Love hugs and prayers to you and your wife.
>Z<
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Z - I will definitely reach out to you once we have the session with the MO.
Just received the CT report.
The bad news : "At least 10 new hypoattenuating lesions noted throughout the liver, the largest measuring 1.5 cm in segment 2/3 (7/64). Additional lesions are indexed on PACS. No biliary duct dilatation."
No sure how bad this is. Any comments welcome.
Regarding her bone mets the comments are :
The good news : "Overall stable appearance of diffuse sclerotic osseous metastases. No pathologic fractures identified."
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I would bet that if they biopsied the liver lesions you'd discover they were triple negative or HER2+ or something different than the cancer in her bones. If the cells in the liver aren't ER+, Ibrance won't work on them.
We think of tumors as being all the same but they aren't at all. They're made up of all different types of cells. Ibrance/Faslodex/AI will kill the ER+ cells, but won't do anything for others.
Edited to add: Hang in there!
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Met with my wife's MO at Stanford today. She is not going for IV chemo right now, but will be prescribing Xeloda instead. I asked her how come the bone mets are stable while we see tumors in liver and she really did not have any answer. Neither does she think that the tumor type has changed (apparently based on her experience). So we were not totally convinced by those answers.
We ordered her liver biopsy anyways and also going for Foundation 1 and functional testing with Rational T.
Going to meet Dr Munster from UCSF next Thursday and see what she says.
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I have a different kind of request to the ladies on this forum. If anyone lives near SF Bay Area, can you please recommend an oncologist you trust, caring and thinks out of the box ? I would like to consult with him / her.
Not looking for someone in Stanford (I am losing confidence with the onc there and not sure if I can ask for a different onc at the same place) or UCSF (we already go there for second opinion).
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Dear Faslodex and Ibrance Forum:
Last November the combination treatment using Faslodex and Ibrance was allowed to be used for patients in Germany. My wife has asked that I write for her as her English is not very good.
Seven years ago following surgery she received massive chemo and radiation therapy for breast cancer which had also spread to several lymph nodes. Up till a couple of months ago, everything looked to be o.k. Then it was found that both ovaries had cancer and they were removed.She has now been on Faslodex and Ibrance for almost three weeks.
Her main SE is a severe rash on her hands and a frequent feeling of being cold.Hopefully things will improve as it is difficult for her to plan anything at present which will keep her spirits up.
Good luck to all the rest of you!
Regards,
AW
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D-Husband,
We just wanted to share a warm welcome with you and thank you for posting on behalf of your wife. You're sure to find our Community a wonderful source of support!
Thank you for sharing your experience with this drug combination -- we hope your wife benefits greatly and improves her health! We're all here to support you both!
Looking forward to hearing more from you,
--The Mods
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D-Husband - Welcome. If you enter your wife's treatment profile and diagnostic history in the profile page and then make it public in the settings page, we get some background for your questions and provide better answers.
I am wondering why you started on faslodex. usually you want to hold that for a second line treatment. has your wife already been on A/I's like letrozol?
In any case, faslodex and ibrance should kick your wife's cancer to the curb. It doesn't work as fast as chemo, so give it 3-6 months.
>Z<
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D-husband
Welcome you will find lots of good information here and very kind people. This treatment has had amazing results but it does take time. I'm only on the Faslodex and I've been having the best year. I'm surprised Germany is just getting to this now. Machs gut Ich werde die daume fur euch drucken
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I posted this on the straight Ibrance board, but things move so fast there that I didn't get much response; so, I thought I'd ask over here with people doing my exact treatment. I started faslodex and Ibrance Jan10th &12h (took a little longer for the ibrance to be approved/messed those dates up on original post). On 1/7, my 27-29 tumor markers had risen to 42.1 up from 35.1 in November when we found the lymph node near the liver lightning up on the Pet scan. This was about a 10 point jump up even in November from where they had been living most of the previous 45 months. This past week on 2/7, those tumor markers had come down to 38.3 almost back in normal range (though it was "normal" when we initially found the progression).
I should be happy that it is trending the "right" way, correct!? Do people normally still see spikes up before it comes down usually on this combo? Or I thought I'd read that it takes a while for some people's tumor markers to show anything on this drug combo. What have you guys found? I've had no side effects other than being mildly neutropenic, but it is easier to handle the idea of all of those neutropenic precautions .indefinitely if I at least now think that it really is doing the job it is supposed to do. Have others found that to be true, too? Being so new to this, I'm just curious about other's experiences. Thanks in advance!
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nbnotes - trust your gut here, your TMs sound fine and moving in the right direction. When I was first diagnosed my TM was only 40, then dropped to 38, then rose to 77 when I had a jaw met, now dropping again. But TMs are not the full picture - how do you feel? What do your PET scans show? That is the best picture for most of us. Also note, fas+ibrance takes about 4-5 mos to fully kick in, so please give this combo some time.
(()) Claire
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Hi, Nancy. I think it is very good that your TMs moved down into normal range. I would feel good about that. Reading on the Ibrance thread the past two years, I have seen women for whom the drug took a few months to work, and others for whom it worked right away. I've seen markers that rise initially and then go down, and others that just go down.
By the way, my onc said that in spite of the blood counts, they aren't seeing a lot of infections with Ibrance. So I took a relaxed approach with common-sense precautions like washing hands and avoiding sick people, but not as meticulous as when I was on chemo when, for example, I avoided self-serve yogurt shops.
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lalady1 - I've been very lucky so far and have no side effects other than the low wbc/anc counts. We will be doing the first scan on ibrance after 3 months on the drug; so, we'll see abut scans then.
ShetlandPony- It is reassuring to hear that many ones believe they aren't seeing as many infections with it. I'm a college professor, and the flu is currently rampant at work, church, etc.; so, I've felt pretty nervous about that and just wasn't sure how far to go with the precautions. Your examples give me a better idea that it can be more livable adjustments not the major ones. What about fresh fruits & vegetables and salads out at restaurants? Are you still cautious with those or not as much?
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nbnotes - my onc said to avoid salad bars (bacteria factories) and all raw fish. I followed his instructions and I'm fine so far 15 rounds later. I only needed one blood transfusion when my RBC tanked during round two.:( Please watch your RBC and WBC numbers. I have traveled to Europe in December and been on two cruises, I upgrade to business class with miles whenever possible. Our lives don't end with this diagnosis. Shetland is super savvy about this. Rooting for your scan!
(()) Claire
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Yes, drugs or no drugs, I shy away from public self-serve buffets and salad bars, as well as raw fish. Also, I find it advisable to have a family member clean out the cat box. "Darling, you'll have to do it. I'm immune-compromised."
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lalady1 & ShetlandPony -- Thank you for the info, and those are things that I can stay away from pretty easily. Knowing that I don't have to be as extreme definitely helps make it more livable. Added bonus, I'm 5 days into round 2, and my onc wanted to go ahead and repeat the bloodwork. My ANC has come up from where it was a week ago (1.3) to 2.4; so I can breathe a little easier anyway. My WBC were 3.9 so still low but not too bad, and my RBC are still in the normal range so far.
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Shetland - Hmmm self serve yogurt shops are kinda gross aren't they. Never thought of that.
I clean the litter box, live on salad bars and raw fish and I have two kids who bring home every disease that comes through our small town. Rarely get sick, not more than usual and less than my kids and husband. The nearest self serve yogurt bar is 40 miles in the wrong direction, thank god or I'd be fat and ill all the time, I am sure.
I am just getting over a stomach bug which I appear to have given to my poor children. I got it having dinner at my meticulously clean friends house. Her husband came down with it a day later just like me. This bug seems to transmit extremely easily.
>Z<
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I get a cold every two months like clockwork. But when I mentioned that to someone they said "and how many airplanes were you on last year?" I sheepishly had to admit that maybe it wasn't the drugs.
As for TMs, mine spiked one extra month and then fell, fell, fell. If you're in the normal range, celebrate! Don't worry.
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just had first falsodex shots today, waiting for ibrance to get here. Fu with Dr at end of this month, hoping tms are down from 115. He likes this combo, says it's effective but everyone is different. Might also get liver embolization to keep this crap at bay. He says there are a lot of drugs out there to try. Tomorrow I am going to have a spa day so I'm looking forward to that.
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Lvin - A spa day is definitely in order given what you have been dealing with.
>Z<
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Hello All,
Slightly shy about social media but getting braver about posting since I was initially diagnosed January 2015. I was diagnosed with Stage 4 in August 2016 with bone and liver mets. In addition to getting the lousy news that I was stage 4 the largest bone met was threatening fracture and I had to have my hip replacement revised -- so the autumn was lost to recovering from hip revision surgery, 30 rounds of radiation on bone mets and initiation of Xeloda. Between the Xeloda and radiation my mets were stable until last month when my tumor markers doubled from December to February and latest PET scan confirmed larger tumors in liver and more small bone tumors. Sigh. Hard not to freak out! So joining this group today after having read through the thread.
I see an oncologist here in Minneapolis that I like and go for quarterly consults to Dana Farber. I am very intrigued by the Rational Therapeutics testing that Z mentioned -- I did what looks to be a similar test called "The Greek Test" when I went to visit an alternative oncologist in Reno, NV. Will do more research on the differences.
Does anyone else take notes when they read here? My goodness there is a lot of information.! Managed to have pretty good experience with Faslodex shots yesterday and waiting for Ibrance to come from the small formulary chemist so I can start on this complete regime this week
It is finally warmer and sunny in Minnesota so heading out for a walk!
Warm blessings,
Kimberly
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Kimberly - welcome. we have an Ibrance thread that will help you get through your new treatment. We have a lot of people on this forum with a lot of experience with Ibrance. It's pretty easy.
I don't know much about FISH mutations as I don't have it myself. But I am ER+PR- with mets to bone and liver and Ibrance seems to be holding it in check. A few people on this thread have advised me that Ibrance should work better with PR- cancer. I find myself arguing with these folks. It's like I have a hard time accepting the fact that I have been lucky in SOME respect. But Ibrance really is working well for me and I hope it does the same for you.
>Z<
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Zarovka, Thank you so much for the welcome. I have been reading a lot and will go check out the Ibrance thread.
I think the FISH signification on my cancer type indicates the type of test that determined that I was HER 2 negative. So, as I look I think we have the same type of cancer: ER+ Pr- HER2 - Can't think of any of us as "lucky" here but rather like to focus on being grateful for what I DO have in my life. Cancer aside!! I have read some of what you have written on other threads that I have followed and I really respect the work you are doing to research and advocate for yourself. Very inspiring!! And love how much you are willing to share
Off to the Ibrance thread and hello again to all those on the Ibrance and Faslodex combo!
Kimberly
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Hi Kimberly!
Like Z, I am also ER+PR-HER2-, and so far I've been on this combo for 19 months. It's been six months since my last scan, though, so we'll see if its still working at the next scan coming up. Good luck!
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Cure-ious (what a great name!) Thank you so much for letting me know about your experience. After such a short time on Xeloda I am pretty anxious for something to work!! Total fail on Taxotere and Cytoxan, Radiation and Femara (Letrozole). Tumor markers doubled from Christmas to February and PET scan confirmed progression. Boo! So taking hope that Faslodex and Ibrance can work for me.
Wishing you all the best on your next scan!!
Kimberl
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Hi Kimberly - welcome to our savvy group. Hope the Ibrance thread helped you too. Please give this combo 4-5 mos to really see results. Sorry about your fail on Madame X, but AIs are really powerful tools. What were your last TMs? When do/did you start fas+ibrance? Assume you will start with 125mg, but 100mg has been effective with less SE's for many of us. Lucky you are near Dana Farber which is tops - I go to UCLA where part of the palbo (Ibrance) studies were first completed.
(()) Claire
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Hello, kachincolor. Your new treatment is quite different from your previous ones, so it may be just the thing to outsmart the cancer. Lalady, yes, having just switched me to faslodex, my onc warned me that my next TMs may go higher before they drop (as Pajim's did). She also said she is not worried about an increase in lesion size on the scan because when the drug starts working, they often swell before they shrink. I love how she is talking like she expects success! I feel that I will have to remain calm as I get my next test results, and then next time we will see evidence of the drugs working. I feel great.
How was your spa day, LvinAZ?
(I'm on Fasoldex with Afinitor, but hardly anyone else is on that combo, so I hang out on any thread that relates.)
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Shetland - I am glad you are feeling great. Your onc is awesome.
>Z<
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She is that. Thanks, Z.
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