How are people with liver mets doing?
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Yes, that MO must not be familiar with y90. It depends more on you liver numbers and timing is very important. I had lots of active mets in my lung, pleural effusion and multiple tumors in my chest. If even this new MO says no, can you get your own appointment with experienced I R. That's not going against her wishes, it just going directly to the source.
Tennille I am super happy you don't have to be on chemo while your liver heals.
I was fortunate that I didn't have little ones with my first DX. Mine were 18 and 20. But with my third DX I had 3 year old Aubrie. There was some debate about telling her. I just said Aubrie, I got too short of a haircut so I bought a wig! Her eyes got big and she said Can I take it off? I said sure. Off it came, with lots of laughter. But she did say she did not like my too short haircut either. Later we had more discussions as she aged. The most interesting one was why I didn't have a breast. She called my cloth prosthetic a poof. Lol
Lynn, thanks for the compliments about the video. 12 year old Aubrie has watched it several times, too.
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Bubblebeard...if it's not too much trouble, will you let us know what you learn from your 2nd opinion appointment tomorrow? My large tumor is currently at 11.9 cm, and both my MO and 2nd opinion MO agree that I should stay on my Gemzar Taxol until the end of December when I have my CT again, and then if I continue to be stable or have some more regression then I can go to just Taxol only. They both feel with my tumor size I need chemo now. My MO doesn't believe with my large tumor, that anti-hormonals will be strong enough to knock the size back. I would love nothing more than to get off chemo now, but honestly would be a bit scared to go to the anti-hormonals. So I'm very curious to hear what your 2nd opinion MO says.
Just curious...because I'm seeing you have resolving bone mets, are you on any bone strengthening drugs like Zometa or Xgeva or something like that? I was put on Arimidex after treatment was done a few years back, and had a dexa scan which revealed I had osteoporosis even before the Arimidex started, so was put on Zometa and have been on that for 3 years now. I was a bit puzzled when I developed the massive liver mets that I didn't have any bone mets, and my 2nd opinion MO suspects that the Zometa may have possibly protected my bones. Just something to think about if you're not on something already.
Both of my MOs don't believe Y90 is an option for me due to the large tumor size. Though I'm still interested in this as an option down the road. I was enlightened to read a previous poster mention maybe its not an option because its not offered at my facility. That never occurred to me. But still...something I want to pursue.
PB
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PB I would definitely check around other places to see what's offered! It's trusting to hear about new treatment practically every other day and there's always a reason that it's not right for us for one reason or another! I wonder if they could do surgery on a big tumor? Probably depends where it is in the liver.
Bubble, just want to add I found aut about the doctor and the treatment AT&T Shands by looking it up online. I didn't get referred, just called them myself. They require an MRI that my oncologist had to order and then I had to send it along with the other. Records but the hosp took care of that. And as usual my oncologist gave me hassle and wouldn't order the MRI. I told nucmed I will pay for it myself, but that was not allowed bc I had insurance. I got so mad I said to oncologist, I want to get this guy's opinion and if I can't get the MRI I will go to Tristan imaging and tell them I have no insurance and pay myself! Well I think opinion was the magic word and he finally agreed. He wouldn't want it to be said that he prevented someone from a 2nd opinion.
My parents have a trailer where they stay in the winter near Orlando at a park called Outdoor Resorts Orlando at the area called four corners. Are you familiar? It's about 2 hours from Shands. When I was at hope lodge I met a lady who actually lives there. My mom hangs out with her at the pool sometimes. I love that park and if I don't live to get some retirement and some of the $ that's been confiscated all my working life I am going to be one pisses off dead person!
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Wow sorry for typos.. Frustrating not trusting. And not AT&T lol!
I am getting a port next wed and I know people say they like it and it's a simple thing, but they said I would there 4-6 hours! Wth is that abt?! And asked if I was allergic to contrast. I'm so scared of contrast now bc of the liver and kidney problems. It was just a scheduler that called me and she could not answer any questions. This kind of stuff makes me way more irritated than it should. I was surprisingly able to get some Ativan from the stingy oncologist. Only 30 and only a half a mg but it should get me through this episode.
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Thanks for all the advice and encouraging words! I will definitely be back on tomorrow to let you guys know what the new doctor says. I'm going to try to call Shand's myself. Not only is this other oncologist not familiar with Y90, she doesn't seem that familiar with anything. She's contradicted herself so many times that I'm just not comfortable in her care anymore. It's a tricky situation there with my insurance. They turn down a lot of stuff and being at moffitt they just write it off, I have never got me one Bil from them. I don't have the money to pay for stuff myself so switching to a new oncologist is a bit scary. But I only have one life so I have to see what my options are.
As far as going off the chemo, I thought the same thing. The way she explained it to me was that my tumor was so reactive to estrogen they thought this was the way to go. Since I'm not comfortable with her I pulled aside a couple of nurses that have worked there under my other oncologist and they are extremely experienced. They both seemed comfortable with this treatment plan, which was some reassurance. I'm very nervous about this appointment tomorrow but excited as well. Either hes gonna tell me I'm on the right track which is great… or hes gonna start pointing me in the right direction. Either way I've heard great things about him
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If I don't get into the immunotherapy trial or if it doesn't work well for me, an appointment to discuss Y90 will be my next step. I know they perform it at MD Anderson, where I am a patient.
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HLB. I love, love your attitude! You go girl. Your assertiveness inspires me. Believe it or not I am not bold. Making that video was the boldest thing I've never done. I have confronted my doctors but was shaking the whole time.
The thing is, you have every right to get that MRI and opinion about y90. Its not his body, it's yours. I could go on and on. But, you got this girl sand you're an example to all of us.
Kattysmith I'm a fan of MDA. They did wonderful things for me and my husband. I hope you get TX there that is effective and helps you live long and well.
Bubblbeard. Yes, yes to the second opinion. Your MO sounds a little too flaky. Makes you wonder how he got through residency and fellowship?!?! 😨
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HLB-make sure they put you out! They gave me morphine, through an iv, I was awake the entire time, and felt everything. I was screaming when they were doing the lidocaine injections. Felt the blood run down my neck and back. You have a "sheet" an inch from your face and is attached to your chin. You are tied down. They kept saying it wasn't a surgery, it's a procedure.. I said you are cutting me open, so it's a surgery. Worst experience of my life. I had 4 children with no meds, and a miscarriage, this was far worse. I'm glad I have the port though. They get it in every time. Most of the time it doesn't hurt. I use numbing cream (a prescription) an hour before my appointment. Most of the time it works. Good luck!
Lynne
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omgoodness Lynne! I cannot imagine being awake for a port procedure… I was completely knocked out for mine. When I had it the 1st time around it really made things so much easier. I never used the numbing cream but that's because nobody ever offered me any lol. But it really wasn't any worse than a regular needle stick and 99.9% of the time they get in with one poke. This last time I went to go get chemo I think I got poked 5 times before they found a vein they were happy with.
So I went and got my second opinion. I'm so glad I did! Not because I'm on the wrong treatment, he thinks we're headed in the right direction which is definitely reassuring. But… he made sure I was aware that there is no rule that says I have to go to a radiologist at Moffit. He gave me a referral to the interventional radiologist that he uses and thought that the y90 or radioembolization are both very good options for me. He knows my old oncologist, and word is she will be back at Moffit in January. If that's the case my gut is telling me to stay where I am. She knows my case inside and out and has always been fantastic. Now that I know that I'm on the correct treatment and I have the referral to talk to somebody about y90 I feel a lot better. If I do hear that for whatever reason she's not coming back in January… I think at that point I would just switch over completely to Dr. Wright. There are so many benefits to being at a place like Moffit. One huge benefit is they do a lot of research there so if it ever comes to it and I have to start looking at trials that's where I wanna be. But over all it was a really good day. I am very happy with the outcome and grateful for this forum and all of you lovely ladies because if not for you I wouldn't have ever done any of this!
On a second note I've been arguing with a mail order pharmacy about my insurance and getting a pre authorization for Ibrance. I didn't make a stink at the doctor's office just to get held up by the pharmacy lol. Well today I transferred the prescription over to the pharmacy inside of moffit and walked out with the Ibrance in my hand. So I will be starting that tonight, finally
And now it's lunch time and I'm exhausted already lol.
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Katty-
Is this the trial you are considering?
https://clinicaltrials.gov/ct2/show/NCT03369223
If so, the second agent is another immunotherapy drug, which would be very interesting that they would want try a combo immuno for a ER-positive MBC patient?! I wonder if the liver mets have remained ER-positive? Or perhaps you have acquired a mutation in one or more of the MMR genes, which renders cancers sensitive to immunotherapy? this is a fairly new trial..
Or if this is not it, then the trial is obviously something completely different. I am just curious about any and all trials that are combining immunotherapy with targeted drugs for MBC, since we need this..
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Thanks for the update Bubblebeard! So informative for me to hear another opinion, and that Y90 may be an option for me too. Need to do some searching for an IR here, anyone one know of a good IR specialist in California, or on the west coast? My 2nd opinion MO is at Stanford, so I'll be checking with her, but she's didn't think it would be an option for me, so we'll see.
PB
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I was awake for my port insertion, twilight sedation. I had no problems with it, sorry that Lynne had such a horrifying experience. I think it could be the radiologist or surgeon & support staff that can make all the difference.
I love my port, no more arm sticks.
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Cure-ious, yes, this is the trial. I won't know for a couple of weeks whether or not I'm accepted; I'm waiting on a biopsy result etc. I was told late last spring that my liver tumors are still ER+, but do have a couple of mutations. I was presented with one trial that combined Taxol with "something I can't remember right now," but then an opening came up in this one and the clinical trial onc thought it would be *better,* which surprised me, because as far as breast cancer,I've only seen TNBC patients enrolled in immunotherapy trials. He did run it past my MO to make sure he was comfortable with it, since they had chosen the other trial together. We shall see what we shall see. I'm not quite as sanguine about this choice as I normally am.
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I had my port placed without any medication other than the numbing lidocaine meds....I refused any type of anesthesia or narcotic. That is my personal preference. I was a nurse and kinda know what to expect, and I get very, very nauseated and totally knocked out from anything. I drove myself home. It’s all a personal choice and think they should accommodate your preferences.
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Bubblebeard --- Glad that you're appointment with Dr. Wright helped you feel comfortable with what you are doing and provided and IR option!
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Oh Lynn that sounds awful! I have heard a bad story like that from a friend who had pancreatic cancer. She was awake and the kept having her breathe a certain way. I guess I'm going to be a problem again because I'm not putting up with unnecessary pain just for convenience. I had a horrible experience with sentinel node injection and mapping. No anes, found out from 2nd opinion doc that look at record and said "my God he used 10 times the amount I do! No wonder it hurt!" Also found out later that my breast surgeon had been trying to get them to let her do it in the OR, after anesthesia. But no because nucmed did not want to give up the revenue. Boy o boy. And he has the nerve to tell the surgeon that no one complains! Well technically I didn't because I was hyperventilating the whole time, squeezing my moms hand off and burst into sobbing when it was finally over! And to top off my absolute hatred of him, I found out the other guy who does it always uses anesthesia! That was 13 years ago and I still wish for him to get a 12" needle jammed into his ball sac.
Bubble I'm so glad the appointment went well! It's so worth it even if they say the same thing, very reassuring.
Grannax thank you. I'm not usually like that but with this disease I think they need to make it their business to treat us like their favorite grandchild! And if they don't I get really uncharacteristically ANGRY. When I had surgery a nurse came in and flushed my IV. It was never right from the beginning and it saw ther thumb shaking when she pushed it. I was like "OOOWWWWWAH!" And she said "little pinch" .ha my ass little! Next time she flushed it I said maybe two whole seconds if you're not too busy?" My mom gets embarrased. I said she hurt me for no reason and I wasn't going to let her do it again! I just had breasts removed! Have bit of sense if not compassion! My dad said I don't blame ya!
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Kpw3 my dad vomits every time he gets anes. I noticed they put Zofran in my IV for surgery so I wondered why they didn't do that for everyone? I never got sick from it but wake up crying for no reason and when the surgery was long I shook uncontollably.
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Bubblebeard-I'm glad got that appointment and your second opinion. Whenever I change treatments, I always go down to Dana Farber in Boston for a second opinion. I had trouble when I was on Ibrance. They would wait until the day before I was to start it again, before they shipped it to me. Many times, it would be a day or two late. My insurance would not let me get that through the local pharmacy (way too expensive). I was only on it 6 months.
HLB-I too had no anesthesia for my sentinal node biospy, when I was first diagnosed, in 2005. They gave me 4 shots in the nipple (which hurt a lot). Then had me rub my tumor area. Then had put me on a table and took pics. It was 2 men, and I am very modest (yes, even after 4 children!). My husband was with me. I was a wreck, because this was done right before my lumpectomy (only my second surgery ever back then). I started crying quietly on the table. On of the men said they were almost through. The port was far worse than that though. YES! Jab a needle in them, see how they like it!
After having my first CTs/bone scans on Monday, for this chemo, most of it was normal, except a lymph node near my left hip is bigger (only mm). So after seeing my oncologist yesterday, she is sending me for a PET scan on Wed. If it comes back as ok. I will have my chemo after seeing her on Fri. If not, back to the drawing board. I hope it comes back ok, this treatment, CMF, is so much milder on me. I was on Taxotere for over a year, and that one was just awful. So many bad side effects. This one hardly any at all.And it doesn't make you lose your hair as the last one did! My hair is finally coming back on top, I never lost the sides and back (about an inch long, and fuzz up top, still bald spots up top). Keep your fingers crossed for me!
Have a great rest of the weekend everyone!
Lynne
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HLB-I had that same experience, when I had my sentinal node biopsy, before my lumpectomy 13 years ago too. They just put the injections in my nipple, and I had to rub the area of the tumor, to get the nuclear dye to go to the node (luckily, I only had one node, and it was clear, still got a 4 inch incision under my arm and some lymphedema out of it). I then was put on a table to see where the dye went. I was sobbing on the table, a combination of being a nervous wreck, and the pain in my breast. I know they like to know which nodes it is going into, but there really has to be a better way.
Bubblebeard-Glad everything is falling into place for you. I hated being on Ibrance (I was only on it 6 months), because of the mail order pharmacy. They always waited until the last minute to send it, and I'd be starting a day or two late each time. I'm glad you took matters into your own hands!
Had my every 3 month scans Monday. First ones with this chemo (CMF). Everything looked good, except for growth on a lymph node near my left hip. MM size growth. So now she's sending me for a PET scan on Wed, to see if lights up (that would mean cancer). I will see her on Fri, and if the PET scan is good, then I will have chemo afterwards, if not, back to the chemo boards. She said that that lymph node doesn;t usually get the breast cancer. An artery is too near the lymph node to get a biopsy. I told her good, I hate biopsies! So now we wait again another week to see what comes up. I've been on this chemo since July, and the side effects are very minimal
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Oh, and last night I had a fever of 99.9. Tonight it got up to 100.7 while on tylenol. I took a cool shower (I hate them, but the work), if it stays down, I'll stay home. I have 3 1/2hrs before I can take more tylenol. I feel warmer and I don't have the chills anymore. Let's hope this holds out. This is one of the only side effects on this chemo. My white cells were fine yesterday (for once!), so I find it hard to believe that it's an infection. My lungs were clear too.Currently, 100.6, I'll check it in a half hour (sooner if i feel the chills). I really do not want to call the doctor on a Saturday night! They will just send me to the ER (on Sat nights, it's a scary place!). I'll keep you posted!
Lynne
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For Katty (and interested others): I am cross-posting a comment I just put up on the Ibrance thread. Katty, this is to show, for example, that your biopsy might show a CDK12 mutation, which could mean that the cancer might be responsive to the Nivolumab-Yervoy immunotherapy combination. I think we should all ask for this mutation to be tested in new biopsies. And if not mutated, then hopefully the CDK12 targeted inhibitor does the same thing! In addition, other mutations, such as in the MMR genes or genomic instability pathways would also indicate a cancer that could respond well to immunotherapy.
I was surprised to see this clinical trail (phase one) pop up, because some of the strongest supporting data comes a paper that was published in Cell not very long ago (June 2018)! Either the drug companies knew of these results from their own studies earlier, or it really shows how fast they can set up a clinical trial when they really want to do it.
The paper showed that a small number of metastatic prostate cancer patients have a subtype of cancer that carries a CDK12 mutation. CDK12 mutations have been found to happen with some regularity in metastatic breast, ovarian and prostate cancers, and indeed the data suggest that mutating CDK12 may play a role in how these cells became metastatic. The Cell paper (link below) reported that CDK12 mutations make the cancer 'hot' to immunotherapy pre-clinically (in mice) and then they even went into the data from clinical trials and found that 2 of the only 3 metastatic prostate patients who had a big response to immunotherapy happened to be the ones who had the CDK12 mutation. Because the CDK12 mutations only happen in a small number of metastatic prostate cancers, the correlation is way larger than you would expect by chance, and indicates that loss of CDK12 kinase activity can make tumors become immunologically "hot" and responsive to immunotherapy.
https://www.ncbi.nlm.nih.gov/pubmed/29906450
https://www.genengnews.com/topics/omics/new-prosta...
https://www.pcf.org/news/new-study-identifies-anot...
Below is a link to the trial- it is open to prostate as well as ANY type of cancer that is found by genetic sequencing to have a mutation in CDK12. In this trial they are treating with a combination of two checkpoint immunotherapy drugs (Nivolumab and Yervoy) targeting PD1 and CTLA4. Patients have to have the CDK12 mutation and measurable disease (ie liver or lung mets, etc). For reasons I don't understand the trial is only being done at Univ of Michigan, but says the sponsors are UCSF and Memorial Sloan Kettering. This may be a case where the academics decided to fund it themselves? Interesting the doctor in charge of the trial (Alva) is listed as one of the co-authors of the Cell paper! And it includes work done by the national stand up 2 cancer prostate team...
https://clinicaltrials.gov/ct2/show/NCT03570619
CDK12 mutations occur in a ( relatively small) number of MBC patients, both triple-negative and HR-positive- in addition, the gene encoding CDK12 kinase lies right next to the HER2 gene, so patients who have gene-ampified HER2 (which is most of the patients expressing high levels of HER2) often have high levels of CDK12. High levels of CDK12 could be just as bad as no levels of CDK12, but it hasn't been studied yet, but they should at least benefit from a CDK12 inhibitor drug.
This is also important for those of us who do not have a CDK12 mutation, because CDK12 inhibitor drugs are making their way into trials, and they will block CDK12 activity in cancer cells. If the drugs are tolerated and effective, it means that we could all be benefitting from immunotherapy, either those who have a CDK12 mutation in their cancer or others taking a targeted CDK12 inhibitor drug. The immune response they observed with the prostate cancer patients was quite strong, because the cancer cells deprived of CDK12 were found to express proteins on their cell surface that attracted the immune system to come in and kill them.
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Cure-ious, can I just be mean spirited/sarcastic for a second and say that since the drug and trial would first and foremost benefit the most common cancer in men, they might have found a way to get things into speedy gear 😏
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Cure-ious, thank you! My follow-up to the biopsy and other testing will be on Dec. 3, so I will ask about the presence of CDK12. MUCH appreciated!
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Hi Lynne,
Good luck. I have been running low grade fevers and have missed my last chemo due to low wbc they were up tp 3.5 friday ans 1.2 leucocytes. Tomorrow I have a CT scan and see the onc. on wednesday. always stressful. I haven´t been able to take the xeloda for 5 weeks it really did a number on my feet.
I had zometa on thursday, have had 5 rounds of that.
Hope to see some positive results, but think my marrow is not able to keep up with the pase he wants to keep the chemo going. I am not going to be taking zarizo to get it up. I want a break from this. It´s been 6 months now constant chemo, blood work,and i´m getting tired. How do I keep going?
Hugs to all,
Raven
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Daniel86- Haha!!! Great point, when the topic is prostate cancer, as my colleagues say, the entire senate probably perks up about the need to move these trials forward, speedy quick!!!
I've been wondering why the sponsors are UCSF and Memorial Sloan Kettering, and run by the people who made the discovery. My guess is maybe the results look more promising than anything else the doctors have seen at present that would allow them to make immunotherapy an option for a new subset of their patients, however it might be they had to fund it themselves because the number of patients that would have a mutation in CDK12 is so low that the pharma companies wouldn't bother paying for a trial ? (not enough upside potential financially?)
CDK12 mutations are found in just 7% of all metastatic prostate cancers (still that is a large number, prostate cancer kills about 30,000 men in the US per year).
There are only nine genes that are implicated to cause ovarian cancer when they get mutated, and CDK12 is one of them. CDK12 is mutated in about 3-4% of metastatic ovarian cancers, which kill about 14,000 women in the US per year.
In breast cancer, CDK12 is mutated in about 1.5% of triple-negative breast cancers, and is amplified (over-expressed) along with HER2 in about 70% of metastatic HER2-positive cancers, and high levels of CDK12 correlate with more aggressive cancers. For HR-positive breast cancers, some fraction (do not know the number) mutate CDK12 in order to escape the anti-estrogen drugs- when CDK12 is mutated then the cancer cells use the PI3K/mTOR pathway for growth..
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Lynne thanks for telling me about your sentinel node experience. I only had one shot, in the areola. Then like you I had to rub to get the dye flowing. For some reason it wasn't working very well and I was laying there for 4 hours. I was so pissed.
As for the port, they say I will need a driver and that I could be there 4 to 6 hours, so I'm hoping that means anesthesia. I'm going to call and try to find out for sure. If they don't use it I will call around to see if any other place does.
I think I will need a liver biopsy. Should I ask that it be sent to a place that tests for different mutations? I don't even know what is tested for other than ER,PR,HER2. I need to find these kind of things out because otherwise I feel I can't be sure I will get the most thorough testing. Also will it have to be done before my first abraxane? If so that's only a week away so another thing I will have to harrass then about. I wish I could just count on the Dr's involved to do the best that can be done without me having to stay on top of things. I know, keep dreaming.
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HLB....When I had my liver biopsy, I asked that a sample be sent to test for different mutations. There was a whole bunch of different mutations they test for. The results took about 2-3 weeks to come in. I only tested positive for the FGFR1 amplification. My facility used Strata testing, which is similar to the Foundation One testing that I think is frequently used. My MO uses the results to enter into some database to see what treatments or clinical trials might work out for me.
PB
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PB thanks, will write the name of that company on my list of questions for him. I have never had a biopsy because it was just bone Mets and I guess they don't like to biopsy them for some reason. The last path report I had was 2004 for stage 2. I hope the liver biopsy is something done with anesthesia. I'm so terrified of procedures and especially terrified if I have to be awake.
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This liver mets lady is excited today. I got invited to be a model in NYC! Suzanne from Say Yes to Hope called yesterday. They pay for my flight and hotel. And I get a new designer gown and jewelry. I still can't believe it. It's February 16. This time it's a real runway and 200 people. Samina Magul is the designer. Once in a while liver mets patients treated with SIR Spheres y 90 get to have a few perks.
On the flip side it might depend on what my scan shows in late December. If that place in my liver that showed up in September was really a met and it shows up again, the TX could cause problems for me feeling well enough to go. But first things first, I need to get fitted for my new gown. I still can't believe it.
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Grannax2, that's so great! You were good in your other videos (modelling and being interviewed) so you will be good again. I pray you're up to going to it.
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