How are people with liver mets doing?
Comments
-
Nicole- Hugs.
0 -
So sorry Nicole. Sending hugs and hope that the fever subsides.
0 -
Nicole, I'm so sorry to hear about your side effects from Halaven/Eribulin.
I'm taking note of them because I will start Eribulin on October 11th as the Doxil failed me and I have progression in my liver once again. After Eribulin, who knows?
I'm disappointed but not too upset because this had already been one of the worst weeks of my life. My best friend of 45 years died 💔 and everything else seems rather insignificant at the moment. I'm going to spend the next few days taking care of myself, breathing and decompressing.
Peace and hope to us all.
0 -
katty so sorry about your friend
I had a thought...last time I did the Eribulin was for my sons wedding I felt GREAT on it... and now the exact complete opposite...GOD....he wanted me to feel great for Frankies wedding that was another answered prayer....
0 -
NicoleRod,
So sorry to hear that you are having a hard time on Halaven.
We are all so different. It's hard to know if one treatment will be harder or easier until you've tried it. Since Trodelvy is a targeted treatment, it's generally less toxic and better tolerated than Halaven. Abraxane, since it doesn't involve any premeds, can also be easier than the old-school chemos. I'm on gem+carbo right now and find it harder than Trodelvy or Abraxane. You still have some good treatments available.
Hugs, Susan
0 -
Oh Katty, I just read it to day, so sorry for your friend...
Dear Nicole, I don't know... our MO used to say that if you do not feel chemo, most probably disease does not get affected too. Maybe this time it is difficult but not only for you? Just wanted to bring in that brighter note... How are you today?
Saulius
0 -
Thanks Saulius but I have to disagree with your MO as last time I did Halaven it shrunk everything in 1/2 and I had zero side effects.....
I do feel better today...but I cant help but feel I am basically almost at 3 year mark..where I said from the beginning is when my time will be up....
0 -
Is the theory that you have developed some sensitivity or allergy to the Haloven Nicole? That has got to be beyond frustrating. On another subject, I tried joining that FB Group, and filled out the questionair, and either no one has read it yet, or they rejected me.
0 -
they take a while to approve...I am PM'ing you...
0 -
Dear Nicole, 3 years can be turned into 6, and then 6 into 9, etc. Do I sound too optimistic? I don't think so... what I am very sorry about is that to reach these hallmarks, you all have to suffer so much. I just wish we all could find a therapy that combines QoL and disease control - you have been very unlucky with it, yet, from what I read, you manage to achieve disease control, although with such a great difficulty. You are such a fighter and example for us all. Now the world, you and your MO... and we... have to find QoL drug for you. Saulius
0 -
hello, just passing on the msg that AmyQ who posted on this thread, is moving to hospice care. Please keep her in your thoughts.
0 -
NicoleRod—. Prayers your way. Hope the fevers disappear and a better QofL reappears.
I always look for your posts. You have been such a strong poster. I have gotten a great deal of strength from your shared stories.
0 -
Wow thank you Dodgers...that really lifted my spirits and I needed that.
So I spoke to MO today. We decided to give Halaven another try at reduced dose of 75%. If no good we will go to Tradlevy next.
Also she wrote to the TAPUR trial that is closed but I would be a GOOD candidate for the trial happens to be at my cancer center...and is asking them to consider letting me in...so we are waiting on that.I will try that reduced dose next Tuesday.
0 -
Nicole and others this may help
info from Metavivor website --
WHAT IF I CANNOT PARTICIPATE IN THE CLINICAL TRIAL AND I AM OUT OF OPTIONS?
Two programs are available for you to explore if you are out of treatment options: Right to Try and Compassionate Use. Metavivor patient advocates worked very hard to pass the Federal Right To Try act in 2017 and 2018. In 2018, the Federal Right To Try Act was signed into law. It isn't widely used because most patients are not aware of it.
WHAT IS RIGHT TO TRY?
Right-to-try laws are U.S. state laws and a federal law that were created with the intent of allowing terminally ill patients access to experimental therapies (drugs, biologics, devices) that have completed Phase I testing but have not been approved by the Food and Drug Administration (FDA).
This law is another way for patients who have been diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access certain unapproved treatments.
Patients should first consult with their physician and that their physicians consult with the sponsor of the investigational drug or biological product. The sponsor is in the best position to provide information about whether the drug or biological product meets the criteria to be considered an eligible investigational drug for use under the Right to Try Act.
WHAT IS COMPASSIONATE USE?
Sometimes clinical trial enrollment is not possible for those living with metastatic breast cancer. Patients may therefore seek access to investigational medicines outside of a clinical trial.
Sometimes called "expanded access", compassionate use is a potential way for a patient with an immediately life-threatening condition or serious disease or condition to gain access to an investigational medical product (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available. This is a potential solution when patients run out of treatment options but do not have access to a clinical trial.
Other clinical trials test ways to find a disease early, sometimes before there are symptoms. Still others test ways to prevent a health problem. A clinical trial may also look at how to make life better for people living with a life-threatening disease or a chronic health problem.
Before the U.S. Food and Drug Administration (FDA) approves a clinical trial to begin, scientists perform laboratory tests and studies in animals to test a potential therapy's safety and efficacy. If these studies show favorable results, the FDA gives approval for the intervention to be tested in humans.
0 -
Wow BevJen. I wonder if there is something similar in Canada…
0 -
BevJen,
Thanks for sharing that information.
I was also looking at this article about Compassionate Use: https://www.cancer.org/treatment/treatments-and-si...
Hugs, Susan
0 -
I've been thinking about HopeandGratitude recently. She was having trouble with progression in the liver and considering y90. Has anyone heard from her?
0 -
Thanks Moth, I am so sad for AmyQ... Saulius
0 -
Hello, I just wanted to provide hope for those newly diagnosed with liver mets.
I just passed the 5 year mark of diagnosis!
You can read my bio for more information because this is a constant job, especially when balancing quality of life and continual treatments.
0 -
Congrats Sandi... SeeQ I have been asking about Hope&Grad. for months...and I PM'd her a couple of times with no reply
BEV....Since Taxol is still an option for me...I don't think I qualify for either right now...but thanks for reminding me.
0 -
Sandi,
Great milestone to reach! Congrats.
0 -
There is definitely expanded access (compassionate use) during a clinical trial for many drugs in Canada. That is how my wife got both her palbo and abemaciclib. In my experience, the entry door closes upon completion of the clinical trial, but if you got in before that, they keep supplying the drug as long as it works for you.
0 -
Thanks Husband. I was able to access Abema through compassionate access but now that my options are becoming more limited I’ve been wondering if trials are an option. The challenge is that they seem to be much fewer in Canada and, as others have noted, we are typically ineligible after burning through so many treatments.
Just thinking ahead a bit. I’m hopeful that Vinorelbine will beat back the liver mets. First dose on Friday and it can’t happen soon enough as they are behaving badly. Latest is an annoying pain in my right shoulder that radiates down my arm. I suspect referred pain. Could be bone of course as I have sclerotic mets everywhere including my scapula. Sigh..
0 -
Sadiesservant,
Good luck with your next treatment. Hopefully it will ease your pain.
It's so interesting how different countries deal with drugs -- and it sounds like the different provinces in Canada also have different approaches. I'm grateful we have access to so many drugs in the US, but not so thrilled with the cost of those drugs here.
Good luck on Friday.
0 -
Sadiesservant, wishing you success, you are in my prayers!
0 -
so sorry to hear about Amy. I hope she’s comfortable.
Today I went in for blood work and Mo visit and she came in smiling saying my blood work was amazing the last two weeks and said “you’re amazing. Whatever you’re doing please keep doing it” So i have hope. I start Pablo and fluvestrant Friday and hoping it makes some impact . If all goes well the first cycle then she will add the prophylactic blood thinner for my portal vein clot and see if my platelets can stay stable on all meds. Fingers crossed. If it works then these ascites can bugger off. My bilirubin is finally at 20 which is the upper limit of normal which I haven’t seen in over 8 weeks. Here’s to hoping all stays on the right path.
Beg the cost of these meds atleast in Newfoundland are atrocious as well. Insurance is covering most (they said a 100a% but there was still a copay ) and the company is willing to cover the copay thank goodness . But it’s wild ow these life extending drugs cost so much.
0 -
B-A-P, excellent, so glad your blood work is looking good!
so what *are* you doing? anything special or just tincture of time?
0 -
moth - just able to eat things that aren’t hospital food. I was very strict with my diet (all healthy. No sugar or simple carbs dairy or red meat ) but honestly , I’ve still eaten well at home but being lax . Having a lot of support and will to live and having friends rally around me and believe in me helps too. I have my moments where o don’t feel like myself and I’m a negative person to be around but sometimes the ascites and belly just get on my nerves. I think time and being with my son is also a cure all as well. I’m very acutely aware that my next labs could be shit but I’m just trying to celebrate the win for now. How could I not ?
Hoping that if the ascites batter off soon thst I can get my workouts .. atleast walks in. I lost all the hard earned muscle I built over three years spending five weeks in bed. Im thankful that I had that muscle to lose. I’d be a lot worse off otherwise.
0 -
Great news BAP. Here's hoping the ascites dries up!
0 -
Cross posting....
For those in the USA..that may be getting put on Abraxane NOT if you are ALREADY ON IT...but those getting put on it...they will not approve it and you will have to go with something else...there is now a shortage of Abraxane from the pandemic apparently....yup my oncologist told me this yesterday...
0
