How are people with liver mets doing?
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ShetlandPony- Yes I have Bestbird's guide. I will review it. I do not know if my MO counts PR+ as still hormone-receptor positive, but I will be asking!!! To me that is the question of the day.
buttonsmachine- Good to hear from someone else that had this situation. And I feel comforted with your post. I will be asking my MO even more questions!!! Am I still HR+ and will hormones still work to a degree. I was worried about going triple negative in the future-- those that are triple negative have poorer outcomes, right?
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I got my first Neupogen shot yesterday. So far no bone pain but I am a little sore around area she gave the shot, tummy. I go back today and tomorrow.
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Hello,
I haven’t posted in awhile and I’m not sure I have in the liver Mets section. In February I was diagnosed De Novo Mets to liver IDC, ER/PR+ HER 2 - grade 2. I started Ibrance, Letrozole and monthly Zoladex injections in March. Due to have repeat scans in June. I have been having bloating with indigestion after eating. I also have been having rib pain on each side. I find it hard to bend over to tie my shoes. I know from my MRI my liver is enlarged. How long after starting medications should this begin to get better? I’m concerned that my Mets are getting larger instead of shrinking. Thank you to anyone whom wishes to respond to me.
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Lost47,
If you have had changes like you've described, I would see my MO and not wait until June, unless your appointment is very early in June. For any changes to your condition you should be communicating those to your MO and not wait for things to change. Better to catch things earlier rather than later, especially if you think that there are things going on that could relate to your liver.
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Lost 47 - thanks for finding us here. There are many knowledgeable and experienced people in this thread who can offer great advice. You mention you started your therapy in March after de novo diagnosis and I know the scans for your treatment are every 3 months, but you should be seeing your MO monthly and getting blood work, even tumor markers tested. Have you mentioned to your MO during these appointments how you have been feeling? I am assuming the MRI was in Feb? If you are feeling worse I recommend you talk with your MO ASAPand perhaps get an earlier scan. How many liver mets and what size mets did the MRI detect in the liver?
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Thank you for replying BevJen and Hope and Gratitude. My last MRI was in February I have 2 small masses 1.2 x 1.2, 1.5x 1.5 and multiple scattered mm lesions through out the liver. The Mets were ER/PR+ HER 2 -, the same as my breast lesions. I didn’t see a grade in the report for the liver. Is that typical? I know you guys are right I need to contact my doctor but I didn’t think lesions grew that fast. She’s ordering my scans I’m awaiting insurance approval.
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Candy, I don't know if TN cancers really have poorer outcomes, although I think it might be a different situation if you are TN from the start vs. if parts of your cancer become TN after developing hormone therapy resistance.
However, it does seem that some of the most hopeful breast cancer research (immunotherapy, CRISPR) and new drugs are better able to target TN breast cancers, so there is that. I guess either way we want to have as many drug options in the arsenal as possible.
Please let me know what your oncologist says - I'm curious about what he/she thinks about your receptor change too!
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Buttons..I cant remember who said it...but someone (maybe MOTH or Cureious) said that ppl have a better response to immunotherapy when they turn from hormone positive to TN than those that start out TNBC... So I think you are right in mentioning that...
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Buttons- Only thing is I cannot do immunotherapy--have autoimmune disorders and immunotherapy not an option for me.
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I’ll have my last Neupogen shot today. Have any of you used the patch for low ANC? I’ve only seen the advertisements on TV. That would have been easier than driving 45 minutes each way for each shot.
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Grannax2 - Assuming her ANC recovers next week, my wife will restart chemo next Friday and will be using the patch to sustain an acceptable white blood cell count. I'll report back once she starts that process.
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Candy..which Auto Immune diseases do you have?
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Nicole--- I have Sjogrens Syndrome and Rheumatoid Arthritis--- diagnosed in 2014 by a rheumatologist. I was on hydroxychloroquine until 2017 when diagnosed with the cancer and started IV chemo. Never have started it back up as my rheumy concerned about my cancer treatments AND using it at the same time. I was also found to have a positive Lupus Anticoagulant Panel in 2019--- situation that can cause blood clots and is also an autoimmune disorder.
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grannax - I used the neulasta onpro when I was doing chemo in 2018. Easy peasy!
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Hope me to...Grannax yea I thought neulasta was great...I had it on Halaven.
Grannax...I also wanted to tell you I think the reason I did so well on Eribulin was bc I have 10% PDL1 and it targets that.
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grannax- it stinks that you have to go 3 days in a row but it’s nice you can go on the weekend. I had too much bone pain on the neulasta shot(before onpro- same med different administration) so I switched to the 3 daily shots. My insurance insists that I give them to myself. But that doesn’t bother me. Maybe you can get your doc to ask insurance to self administer and go through a specialty pharmacy. Shipped directly to the house in cold pack storage.
Lost47- welcome. Side effects of medicine and symptoms of disease can be confusing. I hope you can get some answers soon. My cancer center on-call nurse will answer the phone on a weekend- do you have the option of calling with your concerns? They may be able to help you with some guidance or get you in to see someone ASAP.
Update- I know not to worry over a few points but my latest ca-153 went up from 27 to 33 I know that is still normal range, and I have had progression in the normal range many times but I was happy that it was steadily going down from a high of 40 while on this trial. Grrr
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Dee - on your update. I know the feeling. I keep a table and track....when I started treatment, when there was progression, when adding new meds etc. For some people TMs mean nothing. For me, they are spot on and I caught the small trend before the scans showed the progression. I know it’s not always the way and I pray for you it’s just variability in the testing. But I know what you are feeling....hug
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Dee praying for you for no progression!
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Thanks everyone, good advice. I did talk to the nurse about it today. She explained the differences. She also said it would cause more bone pain. Ugh. I’ve had no pain with the shots
The nurse did tell me that my MO has the shots ordered for the whole time I’m on Navelbine (after second infusion of each cycle) So, once a month I’ll be doing this ugh
Today was especially frustrating because my key wouldn’t come out of the ignition! Then the battery went dead. So, I had to call my daughter to take me. She had to change some of her errands but we made it happen. A friend got it started for me, with instructions to take it to the mechanic
If it’s not one thing it’s another Who was it that said Easy Peasy? I’m ready for some of that lol
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NicoleR - how long were you on Eribulin and how administered? Were other cancer drugs suspended while on Eribulin.? How is effectiveness measured? Liquid biopsy shows I am PDL-1. I am strongly ER+ and maybe a little AR. DR mentioned chemo, but this was before PDL-1 status known. Not excited about chemo. In 2016 I did chemo prior surgery, and it seems like DR said chemo did not shrink the tumor very much. Just finished radiation, quite red. Skin peeled on side and is painful. Tumor is in armpit. She is anxious for me to get CT, but I really want to heal more.
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Blue...I don't know what you mean about other cancer drugs being suspended while on chemo?? When I was on Eribulin I was only on that. I also didn't need any pre-meds..the infusion takes only 15 min. Effectiveness being measured..well by scans....what else would you mean? All my tumors shrunk on it at 3 months scans...After about a month or 2 all my pain was gone. I was on it for 4 months...I went off to have Y90 and since the Y90 got my liver to NEAD I asked if we could circle back to endocrine therapy...and she said yes. We THINK there is a chance the Eribulin stopped working at month 4 (when I went off for the Y90) bc when my liver tumors grow I get this itchy skin condition i call them my "bites"...(most everyone here knows about my bites) they are like TM's for me...lol. anyway my bites went completely away..and then kind of started to come back right before I got the Y90 then I got that and they were gone... I have not had a treatment work for more than 3 months yet.
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Grannax - the onpro caused me no increase in bone pain at all. Its $$$$ which maybe why they don't want to go there. But going in monthly for 3 injections is more than a little incinvenient on top of everything else. I tolerated neulasta better than neupogen. I had injection site reactions and very bad bone pain with that back in 2002 with my initial diagnosis. I was ok on neulasta. And able to do my neulasta Injections at home even back then!!! They just gave me the filled syringes.
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late response but my mom started doxil last week. i feel like we should have done this instead of radiation as i think the targeted radiation allowed for the lung mets to grow to be detectable on scans whereas they weren't before. also working on getting a P13K inhibitor approved by insurance but communication with MO is hard. he only calls and i can't just be there waiting on his call and always miss it. he won't communicate big life or death things over email. i need him to tell me if she doesn't have good options left because i want her to move in with me if this is the end. a continuous struggle as i'm sure you all know.
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Dear Grannax, I was administering Neupogen shots to my wife myself - my mom taught me. You can do this also yourself. If you are not comfortable with doing it yourself, maybe you have someone close or a neighbor? It is pretty easy and after some ~60 Neupogen injections I am now ready to work as a vaccinator in a vaccination center:)P
Dear MCbook, what does your mom's biopsy say regarding grade, ki67, etc.? If these numbers are high, chemotherapy should work. BTW, what was her response to Docetaxel and Carboplatinum? I see that was probably long ago, so if reaction was good, it could have been reintroduced?
Saulius
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So I messaged my MO nurse today with some questions I wrote down. She said she will forward them to my MO to prepare for my June 28 office visit. But she as the nurse did comment on a couple of them.
She said my PR+ was "weakly" positive. That with ER- and weak PR+ we would not treat with hormonals anymore. MO said on the phone last week that maybe we could keep the Letrozole with a PARP in case some of the tumors were still fed with estrogen. So... treat or not. To be determined.
She said "possible" that the cancer could change back to ER+ but not likely.
That is the 2 she addressed as the nurse. The rest of the questions she is forwarding on to the MO.
So am I TNBC now? I do not know. I did not ask the nurse that. That I will save for my appointment.
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candy - excuse me if I seem a little bit out of line here, but I can’t believe you have questions for your MO and you’re not going to get any responses to these questions until June 28? That’s ludicrous. Maybe it’s just differences in treatment in different geographic areas and I know my doctor is probably not unique, but maybe she is. However if I have something urgent I need to talk to her about, I call the nurse and the nurse takes a note and the doctor calls me back. I don’t get comments from the PA or from the nurse when I have questions I need directed to the doctor, my MO. I either get a call back that day from my doctor or the next, depending on the urgency. If I contact my MO via the portal, I know I need to give her 24 hours, but she still gets back to me. There is no way that your questions should have to wait until June 28 for a formal visit. There are telehealth visits now or just simple phone calls which is what I get a lot. These are conversations we have to have, they’re not one off answer a question and you’re done. I left my last medical oncology place, because I could not get past the nurses to my doctor. There was no way I was going to go through months or years of having to fight to get my doctors attention. Even for an office visit, my doctor had mentioned that down the line I might be able to see her PA, but given the fluctuations in what’s happening with me, she said she would see me monthly. Not her PA. I guess there are some weeks where I go with no questions to her, but usually there are one or two questions I have for her during the week and I get a response from the MO. No one else. I truly believe they should have the same respect for you or I would wonder about the care. Maybe things are done differently geographically, but we don’t have time to wait months to get answers for our questions. Part of this disease is living with the stress and the anxiety and the emotions and waiting a month for answers is far too much stress.
Candy, I am no way directing this at you. It’s just that I know you have a lot of questions, very good questions and there is a lot going on with you. I believe, truly believe, you need to have closer and better communication with your MO to get you through this. Have you considered a different MO or at least a second opinion
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Thank you HopeandGratitude for your obvious concern for my health care. I use the patient portal all the time--- never call the office, just put a message in the message center of the portal. I feel they can see the message and respond when they have time. The nurse monitors the portal and she is the one that messages me back- I never get a message from the doc herself. I did speak to my MO over the phone last week--- call lasted 33 minutes (time on my phone when the call ended). When I messaged the nurse that I wanted to speak to the doctor I told her to schedule me a telemed visit so they could bill insurance like an office visit. The doctor could schedule my call as she would an in-person visit. They did not do that. The doctor called me at 5pm when she was done with her meetings for that day (it was an office day/meeting day and not a day in the clinic). So I guess she is not getting reimbursed for those 33 minutes of her time.
In the past when I have messaged thru the portal I have noted it is the nurse's responses, not the doctor. Does she show the doctor the messages? I don't know. I don't know how they run the office. Maybe the doctor tells the nurse that she can field the messages and to notify her (the doc) if the nurse feels it should be delegated up. I really do not know.
This time I messaged the nurse that with the phone call last week, and my reading/research, I had formulated a list of questions. I asked if I could type them there or wait until the 28th appt and ask them then. The nurse said to send them thru now, so if the doc needed to prep for the answers (maybe make some calls to colleagues) she would have time to do that.
I never have talked directly with my doctors-- before the cancer and calling my PCP. I always called the PCP office, gave the nurse a message, the nurse talked with the doc, and then the nurse called me back with the answer. To talk with the doctor himself was unheard of. I guess I thought the MO would be the same way. Even though the MO is 2 hours away and in a large, more up-to-date cancer center in a big city. I just think that is the way it is. My PCP sees 20 patients a day, plus does the "paperwork/computer work". He cannot stop and call patients during the day too. And who knows how many cancer patients are seen daily with my MO--the office is always crammed with patients. They book their appointments in 15 minute increments. She would never get done with her day if she had to see all those patients in the office and then stop and talk to me, and her other patients, on the phone. Not enough hours in the day.
I would feel guilty if I asked my MO to call me every week. Not saying you should feel bad, it is great you have that relationship with your MO. But I try not to bother them too much, even with the portal/messaging system.
And, I don't need those answers NOW. We are not going to change my treatment until we see another scan--scheduled June 25. Just want to ask what I did so my MO could be thinking about HOW we are going to treat the cancer then.
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candy - I think it’s the idea that we should “feel bad bothering them” attitude that concerns me. I would never call MO for things that I don’t need addressed and her nurses are so good that sometimes a quick call with them is all I need. If your doctor only has 15 minutes for you and no time to make calls, I personally think that’s a big problem. To me that means they are pulling too many people through the system and maybe not giving them the care they need. My opinion and my concern for you only.0
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Thank you HopeandGratitude. I know you care. This cancer is not a hangnail, I know. It is my life. But there are other patients but me. A waiting room full of frail cancer patients. Maybe my "feel bad bothering them" attitude is wrong. Maybe I am not a bother. Maybe that is my hang-up.
I am in Southern Illinois (rural) and I am going to a cancer center in St. Louis, Missouri. What part of the country are you from. U.S. right? I know other countries have a different healthcare system.
How about others on here? In the U.S. How do you communicate with your MO's?
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HopeandGratitude, candy worked very hard and took on a longer drive in order to switch to her current onc, so (correct me if I'm wrong, candy) things are actually better than they used to be. As far as using the portal, when I mentioned it to my onc and NP, they kind of snorted/laughed and said, no, if you need something, email me. As far as I can tell, at my cancer center, there are people whose job it is to screen what we send, and they only forward some messages to the doctors. So I will use the patient portal for something that is not time-sensitive or critical. For example, "Hey Dr. L, they scheduled me for x next month, but you told me y, is this what you want?" But if there is something time-sensitive, critical, or that I doubt the screeners will understand, I email to her own email. And I don't do this a lot, I save it for important things, and I keep it short. In exchange, my onc will call me back or my nurse will email me. Sometimes I just email a heads-up, to tell them what I want to discuss (so they can research) or that I will be bringing some paperwork to be signed (because my NP handles paperwork so she will need to pop in). Sometimes I call the oncology department and leave a message with a question, and this works better than using the portal. In short, I think that we can respect our doctors' time and still allow ourselves to sometimes be the patient who needs a call.
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