How are people with liver mets doing?
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Grannax2, I was not on aromasin + afinitor; it was Faslodex + afinitor, for four months. I felt good on it and thanks to the dexamethasone mouth rinse had hardly any mouth sores. But it did not work for me. No side effects and no response. My TMs continued to climb, so I went to Xeloda. And yet our friend Beautiful Sunset has had a good response to this combo. I see more and more people on F + A. There is a thread here for it now. Have you been on faslodex yet? While it is true that aromasin is a different sort of aromatase inhibitor from letrozole/Femara or Arimidex, it is still an aromatase inhibitor. I wanted something different, so that’s why I tried Faslodex instead. It is a SERD. I think my onc figured that it was good to try all the hormonal therapies before resorting to chemo for me, but she suspected the cancer was no longer “functionally ER positive”. Since your F1 showed an ESR1 mutation (possible AI resistance), you might bring this option up to your onc. Just a note, my onc says that response does not always correlate with F1 results. I agree that lung issues need to be considered here. Faslodex alone, or Xeloda might be logical next treatments to consider.
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My F1 report actually suggested Faslodex, that's another reason I was so surprised by her response to my question. But, she is the one who did the many many years of training to get to be an MO, not me. Haha I don't even have a degree. 😁
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My F1 report actually suggested Faslodex, that's another reason I was so surprised by her response to my question. But, she is the one who did the many many years of training to get to be an MO, not me. Haha I don't even have a degree. 😁
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Esperer, thank you so much for your update, it made me cry. I'm in Mexico at the moment having a great time and feeling great but worry is always hovering . It's such a relief to hear that femara may be also so effective. Really happy for you, congratulations! I think that my scan will be in April, I'll update you as soon as I have the results
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Grannax - I am not a fan of Affinitor. It was fast tracked to market but the trials ultimately showed no improvement in overall survival. The side effects when you get them are hard. Of course, many women saw a response on Afinitor and they are grateful for it, but given my other options it doesn't make my list of treatments.
Lulubee - Mild pain in the region of the gall bladder and fatigue are the main symptoms. I say region because right now the pain is to the right of where I believe my gall bladder is. I am very interested in any details of bilary tree failure ... what are the symptoms as it developed? How do you treat it? I am wondering if I should go to a gastroenterologist now just so I am on their radar ... what specialist do you feel best understood the whole bile duct thing? Any details regarding gall bladder issues caused by cancer, how they manifest, how they are managed is of interest.
So far resting and chile reduces symptoms but I don't know what is going on. I won't for a while, or until I end up in the ER.
Thanks everyone. It's so nice to come here and read everyone's kind thoughts.
>Z<
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Z I want to be like you when I grow up.😁 Not afraid to tell MO what you think is best, research and do it. There's nothing I've read or heard about Afinitor that sounds good to me. But, will I be able to tell my MO that? Do I have your scientific mind to research? Do I have the means to travel like you have? No No and No. But, I will talk to her about what other choices I have. I have time.💞
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Grannx2, I am 100% with Z on the Afinitor. My MO wanted me to try it, so I agreed only if they monitor my TM's on a weekly basis. My TM's kept creeping up for 6 weeks and I developed pneumonitis, which I still have problems with. I think by monitoring my TM''s I could clearly see it was not working and could stop it sooner. I also think it made my cancer worse while I was on the AA combo.
Be sure to ask LALady all about her experience. You are right about not hearing much great things about this drug. Some women have done well on the treatment and I am happy for them. But thats not the overall census I get with this med.
You can do this Grannax2, look your MO in the eyes and tell her your fears on this drug, or just tell her you want to skip it for now.
Robin
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Z, Glad to hear your gastro issues are getting better each day. It still wouldn't hurt to go see on for an initial consult, is case you may need him/her down the road.
Robin
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Grannax - One trick is to ask questions rather than tell the MO what to do. Ask the MO to tell YOU the overall survival statistics for Afinitor. (Spoiler: There was no improvement in overall survival with Afinitor.) Once that information is on the table, the course of the conversation will most likely flow naturally to other options available to you.
If that doesn't work, you have the inalienable right to refuse treatment. Your gut tells you it won't work for you. You don't have to have a technical discussion. In the end how you feel about your course of treatment is as important as any other factor. You can simply decline Afinitor, the MO needs to find another plan.
rpoole - Hey there, thinking of you.
>Z<
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Z, thank and know that I'm thinking of you!
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Grannax I also have the ESR1 mutation and my foundation report recommended Faslodex. I was already on Faslodex with Ibrance as the first line treatment when my liver Mets were discovered last July. My MO from the start assumed that the AI wasn’t working and spent some time in our first meeting explaining the difference between Faslodex and an AI in how they work. Also Ibrance vs my prior failed chemos. I was pretty overwhelmed just dealing with the diagnosis so I honestly don’t remember very much of her exclamation but I do remember and appreciate that she spent some time on it.
I can’t remember do you have Lobular?0 -
Z - A few years ago my daughter had intermittent pain near her gall bladder that became increasingly more severe and took a while plus going to a second gastroenterologist figure out. It turned out that she had gallstones that had traveled into her bile duct. I'd never heard of such this happening prior to her situation and learned that it can be quite a dangerous condition.
Tome seems like it would be a good idea for you to go see a gastroenterologist to get checked out if your pain doesn't continue to improve.
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Hi Z, I echo Liwi’s advice about seeing a gastroenterologist. Long before I had cancer, I randomly ended up with gallstones. Numerous trips to my primary care physician were fruitless- they claimed I had a stomach virus, pulled a muscle in my back, etc etc. It got to the point where the gallstones traveled to my pancreas and I ended up in the hospital for over a week, severely jaundiced and with acute pancreatitis.
I had my gall bladder removed and it was a relatively simple procedure, and this was 13 years ago, so I would guess its even better now!
I will say, I think our minds and that of our doctors are quick to attribute our symptoms to cancer. It could very well be, but unfortunately, having cancer doesnt mean we dont have to also worry about other health issues too
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Hi Z, I echo Liwi's advice about seeing a gastroenterologist. Long before I had cancer, I randomly ended up with gallstones. Numerous trips to my primary care physician were fruitless- they claimed I had a stomach virus, pulled a muscle in my back, etc etc. It got to the point where the gallstones traveled to my pancreas and I ended up in the hospital for over a week, severely jaundiced and with acute pancreatitis.
I had my gall bladder removed and it was a relatively simple procedure, and this was 13 years ago, so I would guess its even better now!
I will say, I think our minds and that of our doctors are quick to attribute our symptoms to cancer. It could very well be, but unfortunately, having cancer doesnt mean we dont have to also worry about other health issues too
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Vilma I hope those are happy tears! I'm so glad to hear that you are travelling, and hope that it helps you forget about all of this for a while. It's true that reality faces us every morning when we get up; keep planning and going on trips! I try to go away a few times every year, it helps. Remember that it took three scans before I had any progress on the femara. I was fairly stable before, but no shrinkage until the last scan. Give it time to work.
Have a wonderful time away, and good luck in April!
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Thanks Liwii, Robin and Z. The encouragement is just what I need, I'm going to write down your words so I won't start start stammering at doc office. Especially, the part about "overall survival statistics". I didn't know how to word it, but when I read about trials it didn't seem to add much time to anyone life. Liwi No, I have IDC.
I am going to call F1 one today. I've heard that they will actually talk and explain things about the report. Can't hurt.
Thanks ladies for taking time out of your own struggles to answer my questions. 💞
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Hello Grannax2
I'm currently on afinitor and like everyone else on this board, I too hate it and believe it will do me no good. I'm taking it at the insistence of my MO, whose judgement I greatly respect. Since I was diagnosed I have gone through a number of MO's and primary physicians because I disagreed with their protocols. While I was busy debating without any theraphy the cancer progressed and two vertebras collapsed. So I learned my lesson. Right now I'm not ready to lose the goodwill and sympathy of the whole team at MSKC over Afinitor, I'm just being extra careful to not let the SE get too far. I didn't take it the first month, but I was told to take it when my tumor markers went up on Tamoxifen alone. (which was my choice)
After the first week I developed a dry cough, so I stopped taking it (two days) till the cough cleared.
The following week I developed strong pain in my right flank and liver area, serious side effect so I stopped taking it for another two days till I felt better.
This week I developed an itching and rash that's being treated with a cream they prescribed. This time it was my MO that insisted I stop taking it for two days. I want to stay as long as possible on the hormonal, for obvious reasons, but I'm also psychologically getting ready to move on to xeloda next, and I already got a prescription for hand and foot desease ready.
In couple weeks I'll be getting a pet scan which may confirm what I fear: that at 5mg afinitor simply is useless and at 10mg is very dangerous.
Starting chemotherapy will allow me to qualify for the Immunetheraphy clinical trials being conducted at MSKCC, which is what I consider a better choice for me. I just don't believe in the suppression of the immune system and the compromise of major organs...but such is the state of healthcare...I wish we had more options.
Best of luck with your decision.
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Babs,Lovely family photo.
Lulu, thanks for the useful info.
Feeling great except there are days where I push myself as energy seriously lags, I treasure the days when it's good. Today I am pushing myself as electrical work was completed in a 20' by 20' room and I am trying to clean and put everything back , this May take awhile.
Thinking of all of you ...
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Miaomix. I just read my F1 report again. The information is straightforward and black and white citing numerous TX far superior for me with my ESR1 amplification. Also, it says I have a poor prognosis with this alteration.
I do understand about you wanting to stay with your MO. I do too because I really don't have many options. I've burned bridges. I'm wondering about setting up an appointment just for the sole purpose of discussing F1 report. And I would take my friend with me who has a science background. Maybe I caught her off guard at my last appt, maybe she just didn't have time that day.
Thanks for telling me your story.💞
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I think you have a great plan Grannax. Explore with the support of your friend what your best treatments are based on the ESR1 amplification. I too have the ESR1 amplification so I will be helpful to me to now what you find out. But I think Faslodex was prescribed for the ESR1 in my case. I have also AKT that's actionable with mTOR, so I know why my MO wanted me to try Afinitor. But believe me every ounce in my body says no to afinitor, it's too scary....
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There are experimental mTor inhibitors. I am not sure they are better but a trial is an option.
>Z<
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Hi Zarovka,
Experimental mTOR inhibitors, if from the same family as Everolimus, in a clinical trial would be downright too stressful for me....I like to know the worst thing that can happen beforehand....Which makes the knowledge we all share on this board invaluable.
You are a very courageous woman. I admire your vast knowledge and everything you're actively doing to fight this disease including the details of your experience. May you get excellent results from the infusions you received in Japan.
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Miaomix - I would not disagree with your perspective on mTor inhibitor trials.
>Z<
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Z - thanks for checking in on me post skull rads. I look like a Hostess Snowball - bright pink sunburn on head and side of face and white hair covering some of the top of my head where the rads made it fall out, full blonde hair in back and two black eyes from my fall. Glamour - who knew? I am putting Miaderm on my face and scalp everyday to help with the burns. My mouth sores are getting Nysantin and dexamethasone (not much relief) as I have blisters under my tongue. Lost 12 pounds. If I lose any more I will be in the teen section. oy Changed my British cruise to a British land tour in May (Stonehenge and Cotswolds for sure). Please let us know what is with your gall bladder? Is this anyhow C related? And when will you know if Japan 2.0 worked? Hoping for the best for you. I lasted 18 rounds on fulvestrant +ibrance.
FYI- somehow I am still working part time. For anyone who plays the stock market investing in Apple and Amazon has been a boon
Kaption, Artist, Rpoole and Bluebird thanks for the kind wishes. I am back with the living in vertical now. Marble vs. girl - marble floor won.
Grannax and anyone considering Afinitor aka Aphony-tor. Please do more research - this is an old med and frankly rarely works. It can cause terrible SEs to your lungs as a few ladies experienced. And for me it did NOTHING but DOUBLE MY TMS! Frankly we all must become our best advocates now. There are many new meds with better PFS, please talk with your onc. Or pm me to chat.
(()) Claire on the mend in rainy LA
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Hi all - don't post much but this site has been a lifesaver for me. I can't thank you all enough for sharing your stories and knowledge - I am stronger and have hope because of you.
I was DX with MBC with multiple liver and bone mets last month. I have a question about HER2 and wondering if anyone has any more insight or understanding about this test. Biopsy in 1999 was HER2 negative. The one in 2012 was HER2 “equivocal" with FISH showing negative. This timeout it was “equivocal" again and FISH came back negative again. My tumor ratio number was 1.02. To be positive had to be >=2. The report also said “it is possible that this result may not represent the entire tumor population since only a part of the tumor was tested." I asked my oncologist if we should rebiopsy and he said no -I was definitely negative for HER 2. I tried to argue but that was useless.
So I have tried to research this as much as I can on this site and google but still wonder about things. One site said HER2 Treatment may benefit those with “equivocal" results but couldn't find any specific research done.
Should I rely on someone's rating that is only .08 away from a positive result which could lead to a different treatment plan?
Genetic testing results won't be back for a couple more weeks. Will there be any results from that test that can provide more insight?
Oh yes- my oncologist is from a very highly rated cancer center. After reading everything you all do in terms of research and advocating for yourself, I realize I have to up my game.
My thoughts and prayers for everyone
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Lalady, so glad to hear from you and glad you are vertical and planning a trip!
Ann1999, my HER2 is also “equivocal “ and it certainly causes challenges. I started out being treated as positive with Herceptin and Perjetta four years ago. After that fail I had another biopsy. I was bone only then. We switched to treatment for negative. I’ve gone through many. A few months ago liver mets were seen and I did have another biopsy. They have 5 samples and are studying them. Still equivocal. MO has sent it off for four additional tests. I’m currently on Gemzar and I’ll find out in a couple of weeks if she’s going to add anything else.
When I researched HER2 equivocal I didn’t find much. We are a small percentage and all I could find was debates on what to call us!
MO is consulting with others and perhaps looking for trials.
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LALady - So nice to see your post, distressed to find you touring the rings of hell. At least the rads are over and the healing phase begins. I am glad you are working as one cannot let cancer take over life, entirely. I am distressed about the way the treatment has effected the way you look. I have a melt down when those issues even come up. Obviously, I have a ways to go to achieve the maturity of all the ladies on this forum who have been there done that.
I think my liver is enlarged, probably pressing on the gall bladder and causing gastric distress. Has anyone been able to feel their liver is enlarged? I feel something pressing out into my abdomen below my right rib cage, firmer than whatever is on the left side. I am assuming that is my liver. I am assuming it is enlarged because I read it's not supposed to stick out below the rib cage unless you take a deep breathe? Anyone been able to feel their liver because it was enlarged? What is that like?
The liver is enlarged either due to inflammation (treatment working) or due to cancer advancing. Unless my symptoms deteriorate, I will watch and wait for my appointment with my onc in a couple of weeks. Then some more bloodwork and an MRI. I am thinking that by mid-April I'll have enough information to deliberately fish or cut bait on the path I am on. At the moment I don't know.
I did learn that you can buy the test strips they use to screen for UTI's cheaply on Amazon, so I don't have to go to the doctor to get that test. I get UTI's all the time, they are largely without symptoms but I really need to be vigilant in controlling them. UTIs effect the functioning of the immune system. UTI's are very common if you are on any type of hormone suppression.
The test strips also tell you if you have bilirubin or urobilinogen in your urine, which is a good indicator of liver function and bilirubin levels in serum. Generally, you get this information from a CMP test of blood, but it's handy to be able to monitor this at home if you are worried about liver function, as I am. So far I have trace or negative levels of bilirubin and urbilinogen in my urine, so that helps.
>Z<
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Thanks Kaption..was your FISH equivocal or was your doctor just open to giving you the Herceptin and Perjetta. Did they continue with that treatment? I don’t think my insurance will cover HER2 treatment unless the results are positive- but quess it wouldn’t matter cause my doctor doesn’t think outside of the box. I quess I’ll see what happens on my 1st scan in May.
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Ann/Kaption, I am in the same boat. HER2 equivocal on my 2006 biopsy and one in 2017. I have been on a quest beginning in 2006 to receive when I was early stage to get HER2 treatments. No success yet but I haven't given up. I heard from Woody on these boards recently that she was in a similar situation and ultimately had a CISH test that came out positive. She had excellent results with HER2 treatment after that. I am now working on getting the CISH through Caris. Kaption, I too am curious how you were able to get the HER2 meds cleared through insurance. Good for you!
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is Afinitor the same as Everolimus? That showedas a treatment for one of the mutations on my F1 report. My MO commented that there were several treatments she would want to try before that one after Ibrance/Faslodex. That was when I was just starting treatment and overwhelmied so I didn’t ask for details.
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