How are people with liver mets doing?
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Miao thank you. I must try it. Tamoxifen being given with Afinitor. Is that usual?
Zar you are one smart lady. This monster has got nothing on you. Kudos to you to allow the MO to discuss it with Neuro so he could give you the details.
Babs how are you holding up?
Bluebird?? How are you?
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Bryan, thanks for posting about Missy. I feel shock and deep sadness right now. It is comforting to hear she didn't suffer, it went quickly and she was surrounded by loved ones singing hymns. I am also glad she had a chance to take the recent vacation.
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Dear all (ladies, husbands, mums, and children), I am so sorry for all the losses. I am expressing all my symphaty (I am sorry I can find right word in english). It is so hard to come to this boards but I have learnt so much (treatment options, nutrition etc), thank you. I wish to all of us that some really effective treatment without serious SE is available for all of us.
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Brian thank you for letting us know. I have followed your wife since I was diagnosed and I had been so worried since her last post. I am so relieved that you were all there with her at the end. My prayers were not answered as I hoped she would be blessed with more time. Wishing you all the best now and always!
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Hi ladies, I have bone mets but over the past four weeks I've been getting pain under my ribcage on the right side, it also spreads around to my back. Not all the time and some days worst than others.
I went to the dr and had some recent bloods that showed all my liver markers looked fine, so the doctor dismissed them. But i'm not making it up!
So can I ask a quick question of you - did your liver mets always show up in your liver blood tests as abnormal?
Thanks and thinking of you all.
Julie
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Julie, that's so absurd. A lot of times someone could have a lot of lesions in the liver or the liver is not doing so well and it does not necessarily reflects on the blood. It all has to work in conjuction. I'd say the minimum you need a US, you could have an MRI or a CT, even a PET/CT but i learned that an MRI or CT could be even more accurate to find mets in the liver. That's my view, i'm sure other wonderful ladies will chime in. It's irresponsible from doc. Of course i can't say for certain you have or not something going on, but what you are describing needs a follow up. Take care.
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I am simply heartbroken by the losses of our dear friends. I am never prepared to hear the news. It always causes me to gasp when I read it. So sorry for the families and prayers of comfort and peace as we all deal with the news.
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Bryan, words can’t describe how saddened I am for the lose of Missy. She was always so kind and helpful. My condolences to you and your family. May she Rest In Peace from this horrific disease. Love to you and your family.
Anita
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Mom, Afinitor is usually given with Exemestane, but they can prescribe it in combination with other drugs as well.
I had to stop taking the Afinitor. The accumulative numerous SE were greatly affecting QOL. I feel so much better since I stopped...I'm taking only Tamoxifen at half the dose because the full 20mg was still turning me into a depressed, in pain, catatonic zombie.
Mom, I'm still puzzled by a simple question: when our medications make us very sick is it a sign that they are working, not working, or it's not a reliable indicator? What was Dani's experience in this regard?
Can you all also please share your insight about this conundrum? I would be very useful to us all and I would greatly appreciate your help.
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Julie-I am in agreement with Momallthetime. Best, MJH
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jgbartlett I have liver mets and my blood tests have been so far always normal
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Same here, liver met and normal blood tests.
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Bryan
I am so sorry to hear about Missy. She is so loved by everyone. Prayers for you and your family
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jgbartlett - I have liver mets with pristine blood work. I don’t really feel any pain from my liver. I also have mets in my ribs and I feel pain off and on under my rib cage and around my back. So hard to know what’s actually hurting. Could be referred pain from something else. Does your pain respond to Tylenol or Advil. That may help answer the question. Check out the liver mets thread and pose your question there. Good luck
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Miaomix- I don't think how sick we are from the meds is a reliable indicator of effectiveness. It hasn't been for me, and my doc doesn't think so, either.
Julie- I have extensive liver mets (and bone mets) and my liver numbers are in the normal range and always have been. It's strange to me, too, but the body seems to compensate for a lot of issues. You need to insist on a scan- MRI and/or CT. It could be bone mets in ribs and spine acting up, or it could be something else, but any pain that persists should be explored and explained, even if you didn't have cancer!
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Animal Crackers wrote: "Check out the liver mets thread and pose your question there. Good luck"
Is there another liver mets threads; I thought this was the only one?
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Just throwing it out there from experience(not mine) sometimes these symptoms appear if there is something weary with the heart (in women mostly).
Also relating to your question Miamix from what I saw with Dani her ALP surged crazy in her last 2 weeks close to 900 unthinkable for her, ALT/AST also went crazy so something must have really been going on, her numbers did absolutely not correspond to what the real status was from the scans. And she was almost always not well and it did not show in the numbers, but more on the scans. She was ALWAYS right about her body. I hate to tell you. Sometimes she felt better and then was disappointed when the numbers showed a different story. So sorry it's not a more optimistic straight forward issue.
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Some good news for our sisters taking Herceptin...
Study Finds More Isn't Better for Widely Used Breast Cancer Drug
Bloomberg
Non-stop business knowledge Get more on The Bloomberg App For more than a decade, women with a dangerous form of breast cancer have relied on Roche Holding AG's blockbuster drug Herceptin, taking the $76,700-a-year medicine for 12 months to fight off the disease. A new study finds that they may be able to cut their treatment in half. According to research released Wednesday, women taking Herceptin for six months were just as likely to be free of cancer four years later as those who used the drug Read the full story
Shared from Apple News
Sent from iPad
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Mom, I understand how confusing our predicament is, and thank you for sharing Dani's experience with tests and scans. I too have seen my scan show slight progression in my bones unexpectedly when I was asymptomatic. I feel none of the tests we undergo are truly reliable. ...that's why I would like to understand if we can trust our bodies. My brief experience with various TX have shown that when the meds make me very sick it correlates with it failing. or more likely the dose is too high and is a poison to various systems. A wise Greek man, I think it was Socrates, once said: measure is all...
Sandilee, thanks for contributing to this survey. I agree with you and your doctor.
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Super interesting article Miaomix. Dosing is generally determined by maximum tolerated dose. I talked my onc into doing Abraxane every 9 days rather than 7, and this was a huge deal. But the truth is they never test for the minimum effective dose. Given the effects of these drugs on many body systems, and the fact that a healthy body is an essential partner in fighting cancer, the minimum effective dose is likely to get much better outcomes. Struggling to find the right dose for Abraxane right now.
>Z<
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you're right on Z, I totally agree with you on the importance of finding the minimum effective dose, and that article confirms it.
What if you were to continue on the current dose, and diminish it as the SE increase. Increasing the time in between sessions from 7 to 9 makes sense also
So happy for the great results you're experiencing. All your studies and preparations are paying off. You're doing great, I believe you have great instincts and intelligence that will continue to protect and guide you well throughout
You're in my thoughts and prayers as you prepare to return to Mayo
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Deeply upset and saddened to hesr about tgw passing of these ladies. Bryan and letmewifelive my thoughts and prayers are with you and your family. Babs so sorry to hear of your sister in laws couisin. 33 is no age at all. This horrific disease is so cruel.
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Minimum dosage/determination of frequency of administration of chemo.
When I was on Ibrance-my oncologist jockeyed with the dosage and frequency of the med. I ended up on 75 mg every other week and along with Faslodex exceeding our expectations of attacking my breast cancer in my bone marrow.
Now, with progression to my liver we're approaching administration of Abraxane the same way. So far I s a 70% dose 2 weeks on /1 week off. My numbers are holding their own and I feel great on my first off week. Much less fatigue
I'll be scanned at the end of June which will determine if I stay the course or make alterations to dosage/frequency.
Scout
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Hello All - this is an interesting discussion about minimum effective dosing. I have been thinking about reducing my Herceptin/Perjeta infusions to once every 6 weeks, instead of once every three weeks. It is not the side effects that concern me, it is the travel time/time in the clinic/chair that is a burden to me. I am currently NED, and certainly don't want to mess with that....but I really would like to live more of my life. It takes a whole day (I have to take a sick day from work), every three weeks. I spend 3 hours in the car (on a good weather day). I know most on this thread are not Her2 positive, but I would love to hear some opinions! It is so hard to know what to do.
Take Z's dilemma for instance. If she reduces the dose and then experiences some progression would increasing the dose again prove to be effective, or have you now desensitized the cancer to that particular TX. This is what I struggle with.
Thanks in advance!!
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Hi Kkrenz, you might want to show the article above, about the reduced risks to the heart by taking less Herceptin to your MO, and see if she thinks it's wise in your case to reduce the schedule as you wish.
I would think that if it's only the reduction that makes a TX ineffective, then, an increase should reverse it as well.
Scout, please let us know the results of your scan. We can all learn from each other's experiences when we decide to take less medication.
Z's had already gotten amazing results from her reduced dose, but she also fasts for days before and after. Which is also affecting that great outcome.
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I wonder if there is $ issues involved in these findings, something similar as to when they were advising in taking mamos only every 2 years blah blah, to placate insurance, don't trust them that's all.
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I’m the wrong. Person to ask. I had to stop taking Herceptin after 9 months initially because it did damage my heart. In two subsequent treatments with Herceotin, I had to stop early because it diesntbplay nicely with my heart. Add that to the fact I am not one of those who got to 4 years cancer free after initial treatment and I’m not the poster girl for Herceptin treatment.
It has however helped to extend my life and my heart function has always returned to normal after some time.
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Mom, it's totally about profits but also utter ineptitude...don't get me started...everyone is making money like bandits, but what is the alternative? We need to conduct surveys with the long term survivors on these boards. They are the true geniuses that have accomplished the impossible and beaten the terrible odds.
As a cancer patient that is forced to take drugs that are only postponing the inevitable, but make me very sick, since they interfere with my immune, mental and digestive systems, I'm predisposed to wanting to defensively expose myself to the smallest amount of medication possible. So I might not be objective
Here's some facts about greed: Newly approved cancer drugs cost an average of $10,000 per month, with some therapies topping $30,000 per month, according to ASCO, which discussed the costs of cancer care at a recent meeting. Just a decade ago, the average cost per month of new drugs was about $4,500.
https://www.usatoday.com/story/news/nation/2017/02...
And here some statistics about results:Overall cancer survival has barely changed over the past decade. The 72 cancer therapies approved from 2002 to 2014 gave patients only 2.1 more months of life than older drugs, according to a study in JAMA Otolaryngology–Head & Neck Surgery.
And those are the successes.
Two-thirds of cancer drugs approved in the past two years have no evidence showing that they extend survival at all, Prasad said.
The result: For every cancer patient who wins the lottery, there are many others who get little to no benefit from the latest drugs.
"We are very concerned about the push to get more drugs approved, instead of effective drugs approved," said Fran Visco, president of the National Breast Cancer Coalition, who said the last game-changing breast cancer drug, Herceptin, was approved nearly 20 years ago.
Leftfootforward, stopping the TX when you did because of the SE probably helped protect your heart from further damage. It was actually a fortuitous event. May you continue to benefit for many, many decades to come. As a long term survivor, you're one of my heroes
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Very quick summary. PET/CT on Tuesday showed progression in liver, bone and lymph nodes. CEA hit an all time high. Changing to Kadcyla next week.
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I'm so sorry you have to deal with this, Kaption!! I can't tell all of what you have taken, but you are five years on, so obviously you have a great team.
Here is a discussion of triple-positive cancers that recommends putting in an AI when going onto anti-HER2 drugs, because apparently if the ER is functional, it suppresses the response to the HER2 inhibitors. I can't tell all of what you have tried thus far, so don't know if you've had an AI combined with anti-HER2- anyway, here is the link:
https://www.curetoday.com/publications/cure/2017/b...
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