How are people with liver mets doing?
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Thanks kaayborg! As always I pray the next thing will knock out the ascites. He is starting me on Gemzar alone for now but may add carbo if needed. I am so glad to hear you are doing well on your current combo. Keep on keeping on!
Lynne, thanks for letting us know......a kick in the gut for us all. It is so fast and unexpected. Prayers for her family.
aww, my largest is 2.9 cm right now and was stable on last scan. Bluebird, "AS BIG AS A FOOTBALL"????? HOLY CRUD! No wonder you get the pain.....
Cure-ious, you and Z astound me with your technical knowledge. I would have to spend every waking hour to decipher and understand how all of this works. Thats for sharing.
hartrish, I am encouraged that this combo is working for you. I too am ILC so hope for some good LONGER results for a change. I am starting gemzar only first, then add carbo if needed. How is this combo treating you as far as SE's?
kaylynne, thanks. I am still waiting for work that Cobra has gone through so almost two weeks on nothing. I am with you on the appointments. I sometimes feel like they are going through the motions. My typical appointment he spends about 5-10 minutes. No matter how hard I try and bring a list of questions or concerns he seems to manage to skirt out of there......a nice man but somewhat vague. Best of luck on Xeloda.
Grannax, sometimes I wish my family would read this site too. Not necessarily my posts and feelings, but us women in general who all go through this hell fire. I know some of them do avoid seeing me out of fear or feeling awkward. But how do they think I am coping?
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Artist, I’m starting Gemzar very soon also. Don’t have all the liver biopsy results, but she doesn’t want me off treatment any longer. May add something after all results are in. Good luck to us both!
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Hi, just joining the liver mets club, just wondering of any of you got treated only with hormone blockers for liver mets. I have no liver functioning problems so far and I'm responding very well to femara ( dramatic decrease in bone mets pain) . Will appreciate you thoughts on this!
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Sorry to interrupt here, but we are helping Healthline find women local to NYC who would be willing to share their story in a short video. No worries if not, but thought we'd ask. Sending hugs to all of you
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I can't believe Aurora is gone. She was so sweet. I don't remember things getting very bad, she said there was progression and she was getting new treatment, what happened? It's so kind of you to pass on the message Lynne, please tell her family she will be missed. Such a downer...
Kayl just like cattle. And yes, we always have to call attention to the docs. Even this doc that is old school and seems to care, forgets what we told him or what he said. And so it goes.
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I can't believe Aurora is gone. She was so sweet. I don't remember things getting very bad, she said there was progression and she was getting new treatment, what happened? It's so kind of you to pass on the message Lynne, please tell her family she will be missed. Such a downer...
Kayl just like cattle. And yes, we always have to call attention to the docs. Even this doc that is old school and seems to care, forgets what we told him or what he said. And so it goes.
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Mom, Aurora told me about two weeks ago that she was about to contact hospice. She had been having serious difficulties caring for herself for a few weeks, and there was no one who could stay with her around the clock. She had had SBRT for her brain mets, and apparently her cancer continued to spread. It seems that she went quickly. She was a kind woman with a beautiful soul. Cancer shows no mercy.
Artist, I hope Gezmar brings you quick relief to that ascites. Are you still waiting for COBRA info to be forwarded to the appropriate places? Sometimes a former employer will help by contacting the insurance company and asking them to push thing through their system and in turn contact your provider. There is no excuse for that to hold up your treatment since the paperwork has been submitted. Red tape, ugh!
I recently read that many of the doctors affiliated with hospitals and medical centers have been given guidelines for the amount of time they should spend with patients during office visits. They were told that 11 minutes is sufficient. That explains why most appointments are booked at 15 minute intervals. It gives the physician time to go from one exam room to the next, but it doesn't provide enough time to satisfy most patients. Now you know that there will be a patient or two whose visit will take longer, so things get behind schedule. That's when we find ourselves seeing the dr run in and out of the room in 5 minutes flat. It's all about money and volume. I do have a urologist who spends a lot of time with me. She reviews scans and lab results with me, explains everything in detail, and answers all my questions. She also runs late - always. Now that doesn't bother me because I know why it happens, but I am sure many people are aggravated as they sit in that waiting room.
Hugs and prayers from, Lynne
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Kaylynne I need to reach out to the participant who hired the consultant for more details. I know he is paying the consultant and it isn’t covered by insurance. I don’t think the consultant works with his oncologist, the role is more to provide addition oversight and treatment suggestions. One thing he mentioned is that the consultant has staff that researches possible clinical trials for him.
I did a quick online search and saw a nonprofit organization called NavigateCancer Foundation that looks like it provides some helpful services at no cost. Had anyone heard any feedback about this organization?
I hope you have great success with Xoleda.
Kaaborg I’m glad to hear things are looking up with your new treatment.
Artist hopefully you have by now received your COBRA card. I went through this many years ago and the processing delay is so frustrating. Will they confirm by phone that they have received your form and that your coverage is in place? I was able to get treated during my gap, though not for anything high cost, by having the provider confirm my coverage by phone.0 -
artistatheart: side effects from Gemzar/carbo have been mild over all. Some fatigue, back muscle pain that last about 2 days. Nausea meds have worked well so no big issue there. On neulasta for low wbc count.
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hi, was just diagnosed with liver mets and at the moment I'm being treated only with Femara. I wonder if there are others with liver mets that are treated only with hormone blockers.
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Hi Vilma65 I have been checking this board from time to time as there is such wonderful support from an amazing group of women. Until now I haven't noticed anyone with the same diagnosis and treatment, you are the first. I am hoping that MO is using this Tx (femara only) as it seems to be keeping me stable for now. However, I am concerned that as Canadians we are unable to access Ibrance, which seems to be shrinking tumours for many on this board and across the US. How are you making out with the treatment? Has your MO discussed other Tx's with you?
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Hi Esperer, I do find it concerning that we are not covered for Ibrance, my MO wants to start with it as soon as is approved, which doesn't seem to be too far away for BC, what province are you from? She says that at this moment in BC they are basically just trying to sort out the funding but she thinks that we will have it by the end of the year for sure, although she hopes it will be approved much earlier. The problem is that she is not sure if starting it long after Femara will have the sane positive effect (all the still unknowns with the new drugs). She didn't suggest any other treatment other than that at the moment. Even though I started Femara just over a month ago I have a drastic reduction on bone pain so that suggest that femara its doing a good job on the bone mets, not sure about the liver. How long how you been in this treatment? have you had any scans since the start of the tx?
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It is disconcerting that it has been approved since 2016 and yet still has not been added to the provincial formularies. There are groups in some provinces that are starting to send petitions to government. I am from the eastern side of the country, NS, and have been waiting for over a year for it to be added. We need a national formulary in order to obtain these pricey drugs from big Pharma companies such as Pfizer. Fortunately, I have been doing well with Femara, which is blocking the estrogen; however, it does not shrink tumours even though they seem to remain stable. I have had two scans since starting Femara and all is good. However, I would like to see shrinkage or NED. My next scan is in a month and will let you know if there are any changes. Like you I very slight bone pain, although it has been a cold damp winter. Stick with it as long as it keeps working! PM me anytime if you want to talk more, take care!
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Yes, it is, I didn't know that it was already approved in 2016! totally agree that something has to be done, it's appalling that such important drugs are not covered and the money grab by big pharma, one of the steps at the moment is negotiating with Pfizer a price with the province, my Mo says that Ibrance cost could be a 90% of the whole current cancer agency budget!
It is encouraging that there is no progress for you with Femara and hoping for NED. Please let me know how your scan went. I have another scan in two months I'll let you know as well. From this other side of the country where we are having a pretty mild but very wet winter, 4 degrees and sunny today
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Vilma, I was dx'd with a liver full of tumors and was initially prescribed hormone therapy only. It worked very well and worked immediately. By my first 3 month PET scan all liver mets were inactive and stayed that way for a good run. I did add Ibrance after it was FDA approved about 6-7 months in so it is unclear how long I would have gone on hormone therapy along.
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vilma I'm glad you and esperer found each other. So great to talk with someone in your situation and from Canada. 👏
JFL. That's encouraging, I didn't realize you were on Femara only at first with good results.
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JFL, it is great to hear that, I don't want to obsess over the Ibrance and worry that is the only option I have to stay stable for a while, it's really helpful to hear you and Esperer and hope Femara will work this well with me too. Grannax2, yes, it is great to find somebody in the same medical system to be able to compare notes
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Hi Vilma,
I don’t have liver mets yet but thought I would pop into the conversation. I was on Ibrance for four cycles and had to stop due to low red blood cells and hemoglobin so keep in mind that it doesn’t work for everyone. I think your oncologist’s comment was valid regarding price. My extended health paid $7500 for each cycle. Ouch! $90 grand a year is a lot to shell out per patient given how long some stay on it. Funnily enough, it’s even more expensive in the US!
Pat.
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Good luck kaption! We'll have to compare notes. I need the ascites to vacate SOON! I see that your Her status changed once, it will be interesting to see your biopsy results I'll bet..
Lynne and Liwi, No word from cobra yet. i do need to make some phone calls Monday. Seeing as I have nothing else to do.....NOT! It is so enlightening to realize that no one cares, they just want the money yesterday! Thanks for the suggestions.
hartrish, good to hear that the drug may be very do-able. I carve the sensation of feeling well for awhile...
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hi all, just thought I would pop into this board for info from folks who know things. My liver lesion was 8cm at dx, reduced to 1.5cm after chemo, and has stayed at this size for around a year. Occasionally I have pain in that area and convinced something is happening, but so far, so good. Best wishes to all, x
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Thanks ladies for your positive feedback! I am encouraged JFL that you also had such good results. I guess here in Canada we will be an unofficial trial for now. Vilma, I will get back to you soon with results, fingers crossed! Grannex thanks so much for your encouragement.
Zarovka, I was reading through this thread and the bone mets thread, looking for information, and had a question. You mentioned that you were on Metformin at one point, and I was wondering why you chose to use this drug, (was there any concern of diabetes), and if it worked for you with regard to inflammation? Have you also decreased your sugar? And did this affect the progression of your mets?
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Esperer Vilma wish you well with this treatment.
Artist this is so sickening how the bureucracy takes it's time. It's just not fair, i hope your phone calls will speed things up.
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Esperer Vilma wish you well with this treatment.
Artist this is so sickening how the bureucracy takes it's time. It's just not fair, i hope your phone calls will speed things up.
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Thanks Mom, me too, I am not a happy camper right now.....
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Esprer, Vilma, Grannax, I did do hormone therapy only in the beginning but not Femara. I did a combo of Aromasin and Faslodex. I was under unique circumstances being pregnant when diagnosed. My MO wanted me to take an aromatase inhibitor + something to block the estrogen cells (Faslodex) because the aromatase inhibitor wouldn't do anything to reduce the currently very high circulating estrogen in my body, but would only prevent future estrogen production. He chose Aromasin instead of Femara because I believe there was a study using Aromasin/Faslodex, combined although he would have been fine with me taking Femara instead. For first line hormone therapy, I don't think it makes much difference which AI one takes.
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AWD - glad you checked w me in private message, I corrected the football size down to golfball. thanks.
ARTIST AND OTHERS - not the football size - two golfball lesions. Autocorrect screwed that one up.
Kaylynne - I had an oncologist before this one, he saw that expiration date and was going to help it along. I fired him and ended up w this one. He is not perfect but he works with me, listens and supports quality of life decisions even when I would rather push the line. I hope you can find a difference MO that will be fine for you. The reason I say the new one is not perfect is just that - I had the report on the lymph node on my carotid artery and it had gone from 1.5 x 1.1 cm on Oct 5 to 2.5 x 2.5 on Jan 6. But at the last appt when he had the scan and I had the scan he did not bring up the carotid artery. I missed it and now we will visit that issue tomorrow after I have spent the month fretting. Other than this misstep, he is pretty perfect so far. Super OCDC which works fine for me.
Grannax - I am in danger of losing the entire right lung. But now it is the center right lobe and the bronchi both being completely compressed. Before for almost a year it was the upper right lobe. I wanted surgery or a stent. Nope. All doctors just spin me around and send me back to the oncologist, I swear. Except my DNP (doctorate of nursing practice). And I know what you mean - thank goodness for this site and the support herein.
TOMORROW APPOINTMENT W MO --- I am facing to do any tx more than the aromasin now. Add Navelbine? Add Faslodex if insurance will pay, I was on once and it worked well and quickly. But they have report of progression in 2016 Spring. But I went off it due to increased coughing and thought it was the Faslodex se. Or keep on w the tx I am doing which include aromasin, alternative and complementary. The supraclavical on right is filling in or is it swelling from cancer cells dying? The liver hurts a little after leaning forward, I understand those lesions will not go down right away or maybe never even when cancer cells die. The head pain is seldom now and I am thinking it is sinus but scary for me. The carotid artery lymph node needs an ultrasound I think. Not ready for a PET CT. The right lung center lobe being collapsed could be rectified or not. ack. In general I feel like crap the last few days but it could be cancer cie off since I have upped my ellagitannins AND the hemp oil. Herxheimer effect and all and not drinking enough liquids..... and she downs 8 oz water now.
And I run on.... darn. sorry.
Have considered about 6 x now to ask my sister to call off her work an hour early and go to the appt w me. I am not sure why. Or what I need. I have about 2 hrs to ask.
QUESTIONS --
- On navelbine do you have to have a port for the infusion.
- Anyone done well on navelbine for the liver mets?
- How about the oral? Fair well or too toxic?
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JFL , thank you for your clarification, it seems that only in Canada they feel that this is a correct course of treatment for liver mets? shout out to see if there is anybody else that was treated, or is being treated only with hormone blockers for liver mets?
Esperer, I have been in a trial after my first diagnosis of 3A on metformin or placebo, finish that around 2 years ago, if it was the metformin it doesn'tt seem that it did it's job, but i still don't know which was, they will let us know as soon as all the women in this large study are done.
Thank you momallthetime
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Bluebird - Dani was on navelbine for a short time (that's what it is with her) it was suppose to be pretty good, but not for her. She refuses to have a port, so i guess it comes down to what you feel comfortable with.
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Vilma - there are strong arguments against using ibrance as a first line treatment. this maybe a blessing. in hindsight that is what i would have done. see what letrozol does for you. you can combine ibrance with your next hormonal which will hopeful be a ways out.
Bluebird - I know nothing about navelbine but I am otherwise familiar with all the emotions and the situation. Total support from this side of the pacific.
Off to my dr appointment.
>Z<
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