How are people with liver mets doing?
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Shetland, best to ask your pharmacist about papaya. I couldn't find any warnings, aside from it interacting with blood thinners. My wife was on blood thinners, so that may have been the reason we dropped it. That, and it wasn't even working.
I found some reference to it interfering with cytochrome p450 cy3A4, which is used to catalyze letrozole to its active form, and is a very common drug metabolism pathway. Just not sure what clinical significance it has, since there are no warnings regarding interaction between papaya juice and letrozole.
See below:
http://www.ganfyd.org/index.php?title=Inhibitors_o...
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Kay, I am in your boat - working full time for the last 3 years. I have a demanding job and it is truly more than full time. Although I prefer to continue working, I would be in a bind if I ever wanted to stop - my family is on my insurance. DH is self-employed. Also, we could certainly adjust our lifestyle and scale down if we lost my income but it would be hard and depressing. Part of the reason I work is I don’t want cancer to take that from me. I fear I would sit home depressed and feel as if I were already halfway gone. On the other hand, I am exhausted and would love to take 2 months off but that is not an option. No one at work knows what is going on with my BC. Anyway, I feel your pain
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I'm working full-time, but as a college professor I was on sabbatical last semester and able to teach online and do research from home last spring. I'm off contract over the summer.
This semester I'm back in the classroom, teaching five courses, but I have an incredibly supportive work community and am able to adjust all duties other than classroom time, which makes it all more workable. Mind you, I've only been back in the classroom for two weeks and was gone for a week of that for a family funeral. We'll see how I'm holding up in another couple months!
For me, my decision to work is partly financial, but is also because I love what I do. I so appreciate my employer making it possible to continue with my work for as long as possible. I'm awfully lucky!
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Aurora, I haven't seen a post from you for quite a while. If you find a chance, just let us know how you are. I am worried about you. I am lifting you up in prayer and hoping that you are okay. If you do not feel well enough to post, we will understand. Prayers will continue
Hugs from, Lynne.
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Husband and Shetland thanks for the info it’s greatly appreciated😊
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Hi All,
I've been reading up on your posts and trying to get acquainted with the members in this group. I'm beginning my chemo regimen carbo/gemt?? tomorrow, and I'm praying that my body tolerates it well. My pet scan shows no tumor in my liver, but my liver biopsy confirms that it's recurrence of BC. I also have some lung nodules that are suspect. I work full time and have two school-aged kids, and I am really praying that this plan is effective. Any particular tips on this chemo combo? I've been told it's a lot easier to take than the ACT combo I did 8 years ago, and that I might not lose my hair. I'm hoping that I can still work full-time for as long as this treatment is working. Right now, I've decided not to tell the folks I work with for as long as I can hold out. Thanks for any insight.
Missy
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Stable is the good word from my MO today. Even though the mets in my lung and chest are still active, they have about the same uptake as they did in August scan. So the report is kind of complicated. The liver mets showed no uptake, just like the last scan. And, most important, there are no new mets anywhere.
So, I take all that to mean that my TX is still working. It's keeping old mets stable and not allowing new ones to grow. All that to say that I get to stay on TX. I'm happy about staying on Ibrance/femara, better to have the SE I know than a whole new set of SE.
I also got my foundation one report. All thirty pages. It's a over my head but there's a little I understand. Nothing for right now or any FDA approved therapy for others. But maybe some that are not approved now will be when I need it.
Short summary: ESR1, GATA3, SPEN. Also, TMB 6 MB intermediate, MS stable. And ERBB2.
Anyone know anything about this info?
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I felt Foundation One did a decent job interpreting my genetic report ... all of these things can be targets for therapies and trial drugs. Good to have in your pocket. It's also useful to see how the cancer evolves with time...
But the real news is Grannax is STABLE. I am so happy. What a long run you are getting out of that local liver treatment. Gives us all a lot of hope.
>Z<
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Oh. My. Ladies, I just started doubting my onc and caught up on this thread. Amazing the shit we go through that they miss. My onc finally gave me a brain scan for my fatigue and found 20+ brain mets. Bummer, but I'm done with WBR. Unfortunately, my liver enzymes are now all elevated and I have horrific liver pain. I'm in tomorrow for a MRI and she's talking about blockages and putting in a stent. I have no idea about any of this and I'm off to search Dr. Google. Has anyone had anything similar?
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Grannax so sorry you had this accident, after going through a rough patch with the flu this is certainly xtra stuff. But great news on the PET front, MS stable is a good thing, the ERBB2 and the ESR1 they say it may indicate it's an aggressive form, Dani has those, but things are working fine for you. So...if you have questions you could call them and they will recommend a navigator that could advise you.
Robin it's good they finally got some info that could help. You could be on treatment at the same time as taking the antibiotics? 27 is quite low. Could it be a problem with the marrow? In Dani's case Onco says it did not heal yet from all the rads and the marrow did not recuperate yet...I'll pm to you the info re the wigs. I actually did it all and then this damn thing disappeared. I wish this site would have some kind of security, that when this happens it would ask the author if they really want to leave etc..but i'll send it to you.
Kayaabor knowing you, you must be in a lot of pain. You are lucky that you are able to get this combo and hopefully that will make a difference. Well IMMU did not do a thing for Dani, they keep calling to wanna know what she is doing, what's their business once she is off it. By no means Im telling you that IMMU is not the answer, but you are concentrating so much on it, what about a good old fashioned chemo?
Kay not having coverage is really a difficult situation, and working full time like so many of you is a superhuman task. As I said b4, Dani had a business but she couldn't keep the promises of delivery due to not knowing when and where she will be at any time, so sadly she gave it up. She developed clientele, started the business from scratch, she sent accessories around the World, and just like that is done with.
So doc added Leukeran i never heard of it, did anyone hear of it? So weird, unless Dani gave me the wrong name, i'll confirm tomorrow, He lowered the chemo dosage and added this. Her platelets are still in the 70's which is much better than it was.
Shout out to everyone -
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Thanks Mom for the update. I was just thinking of you. Leukeran is a chemo. Chlorambucil. An older drug, low side effects, more effective in younger women. Efficacy in as a monotherapy is not stellar, but combined with another chemo it could get a response. Interesting doctor.
It's interesting that she is at these appointments alone ... you really trust this guy. ;-)
>Z<
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Hey nice to get your blessings! it's just so weird that in all my talk talk i never heard of it. So it's geared for younger ppl? Go figure what he's thinking. Yes, he's super interesting. Type like Einstein, not that disheveled hair, but if you were to tell me a few months ago that Dani has a relationship with him, i'd laugh it off. Yes, the first time was a few hours the appointment, it looked like a funny show, we were all together in the room (her hubby also) then he went out then i went out, at one point neither were in the room i was with the doc discussing notes. Then also i was on the phone with him a lot, sometimes she asked me to call him, sometimes the 3 of us had conference call, mostly due to the bleeding, but for the 2nd infusion I stayed with the kids, it was snowing, and she was just fine with him, she's in a private room (albeit very old) and he comes in they chat, they are learning things about each other. She is very much her own person, she lets him know what she likes what she will put up with. One of the ppl there, is a miserable person and Dani let him know she's not working with her. On the other hand one assistant is from a home shelter and they are buddy buddy. So yeah, I step back. I can't explain, but you could really tell that he got her back. And while i see that i gotta step back let him do his job, i hmm hover, some times you gotta do it quietly. You know.
How are you coming along these days? Are you feeling better?
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Kay and JFL - I'm working as much as possible too. I support my one year old nephew and wild black persian kitten. I love my work and clients which keeps me distracted from Mr C who I do not love. So far, he has avoided process service to leave the premises and essentially is a trespasser in my bones and liver. One day he may be gone. Meanwhile I am bringing my ancestry.com swab tomorrow when I see my PA and onc. Fairly certain that my PA is related to Robin's MO. sigh Inbreeding in the oncology petrie dish most likely. Hi Momatt - sending you and Dani a hug. Grannax - congrats on stable. I will post more details later, but I finished 17 rounds of A-train with honors despite some bone/liver progression. How the hell those cancer cells multipled in the A-train draino mix is beyond weird science.
(()) C
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Momall, I had not thought about being on antibiotics while on chemo. I finish my antibiotics on wed and start chemo on Tues. Is this not a good thing? My MO thinks the marrow hasn't had time to heal, but there is no way to take a break from treatment. I appreciate anything you can tell me about the wigs.
Missy, I did one round of carbo/gem and it was too hard on me, so we dropped the Gem and Carbo was still a great chemo by itself. The only side effects I had on Carbo was fatigue and low platelets. I hope you do well on this regime, and yes you should keep your hair.
Robin
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LA, I am laughing about the trespasser. He needs to be served and evicted! Sorry you had some progression on Abraxane. It is hard to believe. The results were mixed?
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Lalady, what??? Progression while on Abraxane? Grrrr. Not fair. Ok, now that I have calmed down, maybe that means what is left is slow hormone-receptive stuff and needs tamoxifen instead? "Trespassers will be shot."
Thank you for the info, Husband11. I'm not sure how much to trust the wiki article as I can see that it assigns the wrong botanical names to pomegranate, passion fruit, and rambutan. But you remind me that I need to look up the metabolism pathways of whatever drugs I take.
Hello and welcome, georgiabird/Missy. I'm confused -- no liver mets showing on scan, but a positive liver biopsy? I agree with your being cautious about telling people at work. You can't untell, so it is worth considering carefully. All I have got from sharing with groups is being denied opportunities. Cancer discrimination.
Grannax, stable is a good word. As far as "Short summary: ESR1, GATA3, SPEN. Also, TMB 6 MB intermediate, MS stable. And ERBB2. Anyone know anything about this info?" I'll offer what little I know, with the caveat that I am not an oncologist and don't even play one on TV. ESR1 mutations are prevalent in ER-positive aromatase inhibitor-treated MBC. It appears they indicate resistance to at least some anti-estrogen treatments, including aromatase inhibitors, so I would certainly ask the onc about that. But SPEN overexpression may predict response to tamoxifen. Is it overexpressed in your sample? GATA3 mutations are typical of IDC. If MS means microsatellite stable, that might mean that PD1 inhibitors such as Keytruda are not indicated. ERBB2 is interesting. If it is amplified, that is Her2 positive, drugs such as herceptin could be used. If it is not amplified, but mutated, there are drugs for Her2 mutations, such as neratinib, that are definitely worth looking at. Did the report not mention this? (A link about SPEN below.)
http://cancerres.aacrjournals.org/content/early/2015/08/21/0008-5472.CAN-14-3475
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missy: I have been on carbo/gemzar for 4 months now. I had lots of cancer in my liver. My CA 27.29 was 3580 at dx, highest level my onc had ever seen. After 4 months on carbo/gemzar my CA 27.29 is down to 143. AMAZING! my first MRI after 3 cycles showed tumors shrinking. Next MRI is scheculec for Feb 8th so hoping for continued shrinking of tumors and less cancer.
Usually on carbo/gemzar you don’t lose your hair, may have hair thinning. I have not noticed that. Side efffects have been constipation, sore back muscles for two days that starts on day 4 after treatment but only last two days.i get aloxi for nausea and that works well for me for three days. Sometimes have to supplement starting day 4 with zofran but not much. After 4 th cycle had to start getting neulasta for low white count.
Hope this combination works well for you.
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Kay and JFK: I am on my husband’s insurance which is a blessing. I enrolled at my work in a long term disability insurance which was a blessing. I am not working now and am on the MetLife long term disability, also I applied for SS disability. SS has a compassionate care program for individuals with metastatic disease, so I was approved for that as well.
I just could not work with the amount of cancer in my liver and wanted to enjoy my life not knowing how long I would have, enjoy spending time with my husband who is retired and taking small trips to enjoy my days,
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JFL and Snowfall - Thanks for responding. I work for a community college as a financial coordinator between the state and the college. It's low stress and not overly demanding, has awesome benefits and I am allowed to work from home when I feel like crap. I try not to take advantage of that too much, it's just not my work ethic. My co-workers all know what is happening with me because I am an open book and damn that gets me in trouble sometimes. Fortunately, it has been very beneficial here as everyone is accommodating and caring. I really have nothing to complain about except I would rather win the lottery, spend more time with family and friends and travel the world.
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I want to hear your thoughts on this.....
I have liver and bone mets. I am ER/PR positive and on Letrazole and Ibrance. My MO wants to do CT scans of abdomen every 3 months to follow up the liver lesion. The lesion was 8 cm at diagnosis and now down to 2.5cm. I ask him about bone scans to monitor bone mets. He said the CT would visualize the spine mets but not all the bone mets I have---shoulders and cervical spine. He said he would order the bone scan if I wanted but he wouldn't recommend it. He is more concerned about the liver.
What do you all think?? What routine tests should I have as I go along?? Should I insist he order a bone scan or am I being a "difficult" patient and wanting too many tests done??
I also posted this on the bone mets thread.
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lalady I love your post! So innovative with your analogies. Made me LOL.
I've read my report again. There is area that shows more uptake than in August. The rest stayed the same. The radiologist seems to be on the fence about what to call me. I guess my MO decided to interpret for me, which I don't like.
I've read the F1 report several times. ESR1 is worrisome. Why didn't she tell me it might mean AI is not working? She really sluffed the whole thing off. She made it sound like there's nothing valuable right now. And no mention of changing to a different estrogen blocker. Is it because it wasn't her idea to do the test right now? I hope not.
Any more input would be welcome. I'm trying to get into Granna mode because I get go over to have a sleepover with my grandchildren tonight. That's my happy place.💕😍
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My labs before chemo yesterday showed a decrease in my liver enzymes which is great but my tumor markers went up.
12/28 they were 60 and 88. Yesterday they were 83 and 124. What does this mean???
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Candy- Your doctor's logic is this: Liver mets are far more dangerous than the bone mets ... and whatever you use to control the liver mets also controls the bone met. You can therefore treat the liver and more or less ignoring everything els
Sometimes I do this ...my next scan will be a liver MRI even though I have bone mets in my chest that will be missed. MRI's provide a lot of good detail and they are better at monitoring the mess that is my liver. I could do a whole body MRI but it's a lot of time in the machine. But I am thinking nose to toes PETCT with contrast every 9-12 months to get the whole picture.
But your preference doesn't have to have a solid technical basis. It sounds like you want to know what is going on in the bones, and I would not second guess your gut. Very frequently your gut will give you direction that something is off and something needs to be looked at. I have lived to regret backing off on a particular diagnostic or treatment strategy that my gut told me was necessary.
My main point is that your doctor's opinion shouldn't undermine your opinion of him. But it is imperative to get the diagnostics your gut tells you you need to follow the story and make decisions.
>Z<
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Grannax I also have the ESR 1 mutation on my Foundation 1 report and interpreted it as saying AI's may not work. However I had already moved to faslodex when the liver mets were discovered which was a couple of months prior to getting the test done.
My oncologist also didn't feel there was anything immediately actionable in the report and I wonder if that is a common reaction. She did refer me to genetic counseling and testing to see if 2 of the identified mutations common in ILC were possibly germline rather than somatic as I was concerned for my daughter and other family. Fortunately they are not inherited and I am glad to have that knowledge.
I understand your concern and would have asked about changing from an AI if I hadn't already moved to faslodex.
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Grannax, you should definitely push your MO on the ERBB2 (HER2) potential options as those options have really been game changers for many. Based on my observation only, it seems nearly all the stage 4 folks living 10 or 15 or more years seem to be HER2 and on herceptin or one of the later line HER2 treatments. Did the report give any drug recommendations for ERBB2 or note whether you have an “amplification” versus “alteration”? For ESR1, it is certainly good to know you may be resistant to AIs so that your MO and you can keep a close watch on it. However, my view is why throw out a treatment before it stops working. I had several mutations on my F1 that were linked to a high likelihood of hormone therapy resistance but I managed to squeak out 15 months on aromasin/faslodex (with Ibrance added the second half of that time period, after it was approved). Also, although I only I only lasted 3 months on aromasin/affinitor because I progressed, it did slow the rate of progression from about 80mph when I started to 20mph or so. My bc is a speed demon and typically travels at 100mph or above so I view those 3 months when it was slowed down significantly as buying me 3 more months of time.
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Candy, I second what Zarovka said about your MO’s logic of focusing of the liver mets. Personally, I feel more comfortable tracking both my liver and bone mets even though my bone mets have been in hibernation for the last 3 years. There are some people on these boards that have had stable or shrinking liver mets with actively progressing bone mets. Cancer is sneaky and unpredictable. I do a PET/CT every 3 or 6 months based on my insistence but my MO’s original, standard recommendation is CT + bone scan. Wanting a bone scan is in no way unreasonable and is a standard scan to complement a CT to give you a more thorough rundown on your bones.0
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A lot went down at Mayo this week. I'll start by reporting on my experience with the radiation to my sternum. I had SBRT Proton therapy to treat the met in sternum. All the other mets, basically the mets in my liver, breast and lymph nodes, have responded to systemic treatments. The sternum mets persists at a low level through all treatment, so we decided to nuke it. I wanted to use protons to protect this sensitive bone and area. I am far from oligometastatic so there was some question whether it would be covered, but I have developed pain in the area so we considered the treatment palliative. I prefer protons to photons because of the accuracy but its more expensive and it can be hard to get approved. They can stop protons at a particular location so that it doesn't pass through the body past the sternum. Some of my favorite organs are behind my sternum so I really wanted proton treatment. It turns out the insurance approves palliative radiation without approving the modality (photon/proton) without even prior authorization when the treatment is SBRT. Approval of SBRT may be easier because it's just one or two treatments. In my case, I had 25Gy to my sternum in one dose.
Radiation to the sternum requires stabilizing the head in a mask. The mask is very tight and you have to be in there for 45 minutes. My sinuses are constantly draining into my throat right now after a series of viral infections. I did not notice it until I had to wear the mask which inhibits coughing and swallowing. I failed the first attempt during the prep phase because I was gagging on mucus. I came back 6 hours later after administering sudafed, benadryl and a nasal antihistamine and a couple hours of backbends and other yoga poses that drain the sinuses. I also took a sedative the second time. It very doable, but you can't have mucus dripping from your sinuses into your throat going on because you can't swallow and cough well. I recommend requesting a sedative because it's normal to panic at the feeling of having your head screwed to a table. It takes 90 minutes to kick in so it has to be planned in advance.
I hope this helps others getting anything from their sternum up. All this was a surprise to me. The issues can be managed, if you know about them. The second attempt, once we sorted everything out, was no big deal. But when I failed the first attempt I broke down in tears thinking I would not be able to complete the treatment. I ended up missing my final appointment with the MO in order to schedule the second attempt and I did not get my faslodex and zometa shot at 8pm, arriving back at my hotel around 10. It was a long day that I would not wish on anyone.
>Z<
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Z, Sorry your day was so long, but it sounds like you accomplished what you set out to do as far as SBRT is concerned. That mask is not fun....I remember it well. I had 7 treatments with it ( SBRT Proton) and when I was finished the tech asked me if I wanted to keep it. NO! Unfortunately, for me I have some radiation fibrosis and lung damage but it is minimal. Will you get your shots and zometa back at home? How did you like the MO?
JFL Your analogy of a speed demon is right on. My cancer was a slow moving turtle, but has now has joined the speed demon race.
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Thanks to JFL and zarovka for responding to my question. I WOULD like to follow both the liver and bone mets. But I think my MO thinks I go overboard with things. I was worried when my ANC went down and the flu epidemic was going around our town. And now I am questioning him on what tests we should do. I think most of his patients just go with what he says and I am the "difficult" patient that they hate to see come to the office. Maybe I am totally wrong but that is how it seems.
Sounds like it is ok to insist/recommend tests by what you are saying. Do any of you get the feeling your MO is rolling their eyes at your insistence?
I have never had an MRI for the cancer diagnosis. I did have a PET when first diagnosed. But I don't know if we are going to do another PET or when. And it sounds like the plan is CT every 3months. Is it ok for CT every 3 months to be the only testing???? I guess I just want to follow everything closely and if there is progression be up on it so we can change treatments quickly. I WANT TO FIGHT THIS CANCER!!!!
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JFL The F1 report says the ERBB2 they did not find alteration or amplification. I don't know why they put it in the report.
Z so sorry about your very bad day. I had to wear the dreaded mask, molded to my face and bolted down when I had radiation to C2 to C5. It was so spooky to have that done 10 times. But, still n o t what you went through. It's so hard to be US, some days worse than others.
I guess I can see why my MO didn't mention changing from femara to a different one. But I still wish she would have explained her reasons. I plan to talk to her about it next visit.
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