How are people with liver mets doing?
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No, its not a trial. My MO pushed my insurance and Opdivo supplier
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Wow, Ellamilana, that is very interesting. Nice going, MO! Sounds like a great advocate. How is your regimen going? Do you think those meds are helping?
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kayyborg, That's funny about the swearing. I too seem to have developed a cancer potty mouth. Suddenly it just feels GOOD to blow off some verbal steam! I hope you bounce back for next week! Nice to see you back MaryK. My breast actually looks fine as well after several months of Tx and the nodes have shrunk but did have 2 nodes involved.
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this goes out to all my super heroes here on these boards. love you all.
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We think you are a superhero too MaryK and we love you right back !
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lol same is the case with me kaayborg! but the pain (mental) needs to be relieved so i burst out my anger verbally. thanks Artist, this disease is kind of "multifarious" according to my research. the day i was diagnosed with stage 4 TN just 2 years after being stage 2A , a woman came out of the onc's office with a big smile on her face and told me that she is a 10 year survivor of TN stage 3.
praying for a remission for everybody
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thanks Woody,
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Truly, everyone on these boards is a SUPER hero!!!!!
Babs
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Thanks Ladies for the boost..... Unfortunately, today I feel more like a Super Bitch! Just one of those days when I have my doubts about the medical commmunity, I feel disgusted with my employer, I have a now X friend I want to tell to stuff it.....But oh that's another thread! Hahaha Hope everyone is well today!
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Just got my TM's back -down again this month-Yes!!! CA15-3 went from 70 to 46 and CEA went from 18.1 to 12.7. We delayed my scans from the end of May to the end of June since my TMs are always very reliable.
Babs
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Awesome Babs!! have a joyful Spring!
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Great news Babs
keep going for more good news ! 0 -
Babs,
Mary, thanks for the quote. It's true, we are all superheroes. Hard to hear those words of 10 year survivors. I just deleted the 10 year stage 3 survivors thread from my favorite box. Of course I am happy for them, but don't need another reminder that I am no longer part of that group.
Artist, sorry you had a bad day. Tomorrow will be different. Or you could Cancer cuss that X friend.
Hello to all.
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beautiful quote MaryK, so fitting for all of us here.
Artist, you definitely find out who your true friends are at times like this and it's sad to lose a friend but you need to be ruthless and cut the negatives out of Your life.
great news Babs! I saw a different onc today which happens in the public system here. You often never know who you're gonna see but it can be a good thing to get a different perspective. After my last doom and gloom session and being told it had spread to bones, doc today told me not to worry at all, they were tiny spots and liver is all stable which is the main thing. Think the other doc was too quick to change my treatment. Hey ho, going ok with Xeloda so far, just a bit of diarrhoea and tiredness which is easy for us power women to cope with.
Back to swearing: my sis is a great swearer as she does it so rarely it has a real impact when she does. I hate the way some kids these days swear every other word, it just becomes meaningless. Because I'm British I tend to say "bollocks" a lot, the Aussies think it's hilarious.. Have a great weekend everyone0 -
Yes, you are right Isy time to cut the negatives. I have hung around for way too long while she dangled a carrot and then never followed through. I just have trouble believing I mattered so little to her after 10 years. Oh well, gives me more quality time for the true blues....Or I could take Holeinone's advice and Cancer cuss her! Haha! That would feel good for a few minutes. Today was somewhat better and it is Friday! Holeinone you just have to start hunting for Stage IV longterm survivors! Have a great weekend all!
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I know this thread is not for family members so bear with me. My mom was diagnosed stage IV in 2014 with HER2+ mets to distant lymph nodes. She did chemo and herceptin/perjeta and was NED. She was on nothing after, which I found odd but I think it may have been her choice since the chemo itself was an uphill choice to begin with, having done it before years prior and sworn never again...
Now she has mets to her liver which were stable early this year but now show some progression. She is now on herceptin/perjeta. Anyone have good results with targeted therapy on liver mets
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Aimadi-
First feel free to come and post to this forum any times. It has a lot of good info and support.
Second- I had good results with liver mets with a combination of oral chemotherapy Xeloda. And a targeted therapy ( tykerb and later Herceprin). There are lots of options open for Her2 + cancer. It's a question of if your mom wants to try them. I've basically been NED since 2012 on my current combination of chemo and targeted therapy. There is hope. tDM1 or kadcyla is another option. And there are new clinical trials open. If your mom is up for it there are lots of options.,
Hope this helps
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Hello all. Just read a bizzilion pages of this thread like a novel I could not put down. A few thoughts.
CBD Cannabis oil has reduced nausea and improved my appetite. I got my NM Medical Marijuana card mostly as joke (if I am going to have cancer might as well enjoy it). I wasn't trying to get rid of nausea, looking for possible anti-cancer benefits if anything. But what a blessing to have an appetite. CBD has no head high and works for me in low doses (10 to 20mg).
My oncologist says that you don't know what tumor markers mean for an individual until you have monitored them while doing scans for a couple of years. My tumor markers went up a bit these last 3 months as tumors shrank. Lagging tumor markers and flares are common. I am not the least bit concerned neither is onc.
I've also heard from more than one doc and person with cancer, that tumors can flare with inflammation and release the cancer markers as they die and the lesion heals. One of my oncs has said that she is increasingly slow in changing meds because of this delayed "objective response" of some treatments on some cancers. This is very specific to a treatment and an individual, and she noted how scary it is to wait. But its a thing.
Also the error in a typical CT scan, as I understand it, is +/- 3mm. In at least one study, they could scan the same tumor twice in the same day and get results that differed by up to 6mm. If so, that means a stable tumor can appear to "grow" half a centimeter between scans.
It's worth asking the radiologist at your medical center whether they test their equipment for accuracy and what kind of accuracy they are getting. You need this information to evaluate radiology reports. The radiologist at my institution writes his reports as if he is accurate down to 1mm. He has no study to support that and I doubt it. I've had a lot of contradictory scans and tests in just 3 months. More than one radiologist or doctor has asserted confidently, based on imaging, that this or that is so when it was not.
In a recent episode of This American Life there is a chapter called What You Don't Know. It is a great story about a granddaughter trying to understand her grandmothers cancer prognosis, but it's also about how getting terminal prognosis effects the mind and how that influences the outcome. It kept coming to my mind as I read, in pain, as a few folks on this thread relived my diagnosis/melt down last December. I recommend the short podcast to everyone but especially you guys who have faced scary setbacks.
This group has better choices and is better informed, better supported and fighting harder. We will survive and thrive.
>Z<
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Almasi,
My second diagnosis was liver and bone mets. I was on Herceptin/taxol/perjeta for six months and i became NED but i continued on herceptin / perjeta alone till now since november 11 / 2014. I think your mom should wait and see if herceptin/ perjeta will do the job again , if not like leffoot said there are other options for Her2+. I wish your mom good luck and hope she soon goes back yo NED.
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Zarovka,
Welcome to the thread, and thank you for your post . You seem to have everything under control. Cancer is very diversified we actually don't why each cancer behaves differently. I personally never had a false positive or negative on a scan or PET scan. My tumor markers are not very reliable , check them but do not count much on them.
BCD and marijuana are not available medicinally in my country and never had to use nausea meds . It was given to me on different occasions but never had nausea. So i did not use them.
Quality of life is very important in stage IV cancer , i believe it helps us fight this thing and live longer. Also a good spirit and you seem to have both.
I hope you will continue to give us good news telling usthe disease has retracted. Welcome again and sorry you are here.
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Thank you for your responses. At her stage 4
diagnosis she did taxotere with herceptin and perjeta. At her initial stage II she did carboplatin, taxol and herceptin.
I know for sure she will not do another taxane or broad spectrum chemo. She would rather die. She did not do well at all. She even has a lot of side effects with perjeta.
So I really hope herceptin and perjeta work. I already lost my father.
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Thinking & wishing the best for you all.
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Happy mother's to all of you lovely ladies ! 🌸🌸
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Hi all,
I was just diagnosed with mets to my pituitary gland(really????), liver and bone. Meeting with MO tmrw morning and wanting to go in with questions and suggestions. I originally was on TCHP, diagnosed with ER+, PR+ and Her2 +. The tumor in my pituitary showed ER+, Her2+...I will be a starting Herceptin, Perjeta and something else. The something else is what I am questioning. What has worked for you? Should I try Taxol this time? What about Xeloda??
Thanks for any suggestions!
Kathy
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Kthielen, never heard of that before. I am new to stage 4, no advice, especially regarding Her+. Lots of very knowledgeable ladies here, hopefully someone pops in with some insight.
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Kathy, ask your mo about navelbine. I just got started on it along with H/P. I've had 3 weekly doses of navelbine and very little side effects. Praying that is working, will have scan in a couple months.
A few ladies here had it and mentioned good quality of life and it working for them!
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Hi Kathy,
Welcome to the liver mets thread, I hope you'll find home here.
I'm curious, what is the third agent that your MO prescribed?
In newly diagnosed hormone positive mets, it's usual to start with an anti-hormonal aromatase inhibitor (Aromasin, Arimidex or Femara) perhaps combined with Ibrance or Afinitor, rather than chemotherapy. The hope is to control the disease with less aggressive treatments (we hope they're effective, but may have to give them 3 or more months to know).
Many with mets say living with mets is a marathon compared to the sprint of earlier stage disease and treatment. I've taken to calling it an obstacle course with ever new obstacles to confront and overcome.
Kathy, please let us know more and we'll help how we can.
Also, I assume that you'll receive Zometa or Xgeva for the bone mets? You didn't mention it?
Sending warm rays of healing light for you, Stephanie
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Kthielin,
I got taxol/herceptin/perjeta when i was first diagnosed with her2+ i am also ER+ which did not work to hold my cancer for more than 3 years. After three months on HTP i was clean with no evidence of disease till now. I was on taxol for six months weekly low doses and then herceptin/perjeta till now every 21 days. I get Xgeva for bones .
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Welcome Z, Lots of interesting info and I plan to look up the episode you noted. Your comment on thriving, may it fly from your lips to God's ears....Welcome also Kathy. Afraid I don't have any advice for your situation either but hope you find the answers you seek. Almasi, I hope your Mother as well finds something she can tolerate and it works wonders. How stressful for you when you already lost your Dad. I'm so sorry.
Hope you all had a lovely Mother's Day and thank you Stephanie for your never ending healing vibes. Woody, I hope you are doing well!0 -
I just read several pages of this thread to get caught up, and it felt good to be back here with you all. I tend to stay on the computer with BCO too long, and miss out on getting things done or getting sleep. So sometimes I just stay off altogether. It would be better if I could find the right balance. And sometimes I don't want to think about cancer so much. But then I start feeling isolated. Anyone else have a similar experience?
It's interesting to hear several of you--I think it was kaayborg, Woody, Holeinone, and Ronnie--mention the troubles we sometimes have with thinking and remembering clearly. I'll add trouble with words. My brain and my words don't cooperate well these days, and I hear myself babbling and struggling to express my thoughts. I'm guessing it's a combination of stress, too little sleep, and estrogen deprivation in my case. What do you think?
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