How are people with liver mets doing?
Comments
-
yes, I was on fulvestrant and Kisqali right before X. I just figured out how to make my treatments public. My Guardant test showed that fulvestrant should have worked on my cancer, but my tumor markers doubled each month, and scans after 2 cycles showed significant progression. My MO gave me the option of X or Halaven, and I chose X...
0 -
Liwi so happy about your scan results. Hearing good news is the best!
JFL do glad the mapping went well. Hoping the Y 90 is equally as easy for you.
KC glad to hear that you’re going for a second opinion. I think that’s a smart idea
Friday I have my second y 90. I hope it goes as well as the first!!!!
Babs
0 -
KC, I second everybody's great advice on here, go with IR plus Opodivo, and hope to get to stable. I guess the scan already showed Xeloda not working.
But most important is second opinion and scan the trials! Most critical for this is how you feel? Because you were not on any particular treatment for a really long time, I'm not sure the cancer has mutated lots extra, other than it was already highly mutated perhaps- did you have any genetic testing done on the liver tumors?
My suggestion for you, not currently available but coming soon, is a combination of Halaven with a CXCR4 inhibitor.
Phase I trial for that one had 63% response rate (stable or better) and 36% saw tumors shrink. 6 of 24 were still on the drugs at the end of the trial, and there was no apparent difference between those heavily treated or earlier in their treatments.
I hope the Opodivo and radiation synergize greatly, and perhaps this or other trials will look good afterwards.
Here is a link, show it to your doc, keep an eye out for when they get the phase 2 listed:
https://immuno-oncologynews.com/2018/03/15/polypho...
0 -
0
-
So could someone tell me about xeloda? i am currently on abraxane and herceptin. my liver mets grew while o herceptin and perjeta. also had an MRI on my head and jaw this morning. i have numb lip syndrome. i feel like i am losing the battle. i feel good. i have bone mets too, but luckily no pain so far.
0 -
JFL - I am thinking of you. Nice job getting through the mapping awake and dealing with a change of treatment plan with class and wisdom. Keep us posted.
>Z<
0 -
I just read my Pet scan report and I can't believe my eyes...has anyone ever encountered this?
IMPRESSION: Comparison of uptake values is limited due to different
scanner hardware
1. Since January 2, 2018, probably increased extent and FDG uptake of
multiple osseous metastases, allowing for technical differences.
WTH? How can this be possible? Why would they use different scanners that make a comparison not reliable? I went to the same hospital, the same department...
I swear... more than cancer is healthcare that makes me nervous....
0 -
Babs and JFL wishing you well on the continuation of theY90 treatment!
0 -
Miaomix. That’s just crazy. Why have the test if it couldn’t tell you anything? Crazy!!!!
Wanted to share a good thing not having to do with bc. My son and dtr didn’t talk for 7 years. Last year my dtr invited him and his wife to her wedding and they came. They’ve been working on building a new relationship. Well Friday night for the first time in over 7 years I had both my children and their families for a holiday dinner. My greatest hope realized. I couldn’t be happier Here are my 2 granddaughters ( from my son) and my grandson ( from my dtr) My heart is truly full!
Babs
0 -
very happy for you Babs...there’s nothing better than unity, peace and love in a family...Congratulations on bringing them all back together...the children will benefit immensely as well....
0 -
Miaomix, I don’t know if this applies to your situation, but last year KU Med upgraded their PET/CTs. My RO said it was like suddenly having “ high-def.”. But, my MO was concerned that the new images would be hard to compare with the old. It turned out fine, as I didn’t need a PET until they had been in use a while. I never got a message like you did. You can ask your oncologist to get clarification from the radiologist.
0 -
Miao, very odd and annoying scan write up. What is the point?!
Babs, so happy for your joyous, "full house". Nothing is better than that. The girls look so happy with the baby boy!
0 -
CK1010- I guess you're going through a similar experience of elevated cancer markers without the symptoms usually associated with out of control MBC. I think getting a second opinion is a good idea...to be on the safe side and to check what another TX a different MO might offer you! It's good to have options and I know you will make the right decision...
JFL- thank you for providing some reassurance that these tests are dubious at times. That's what I'm starting to believe.
Having suffered a great deal when there was progression, I find it hard to accept there's progression when I've been getting off all pain meds and have more optimism and energy than ever...also considering that the comparison with the previous PET was compromised by the mismatch of machinery, how would anyone know for sure?
You can't make this stuff up....the sht we have to put up with, while remaining grateful and gracious at all times
0 -
thank you Kaption, I will follow your suggestion and question them about the machines, since my new MO wants to increase the dose of afinitor to compensate and that drug scares the living daylights out of me.
but he insists is a good match for my genomic profile...and wants to check in two weeks to see if it will improve my markers.
What I have learned from this is that when I go back to get another pet, I willhave to request they check my records and use the same machinery. Hopefully that should fix this problem.
0 -
Miaomix - If you have any doubts, second opinion. If not, keep going with the plan. I trust your gut 100%, therefore not on board with anything that scares you.
Babs - wonderful story!!
>Z<
0 -
Oh my! I am away from this board for a couple days and so much has happened. I will have to be more regular.
There are so many people going through so many issues. But it seems everyone is still positive and has a good attitude. I read so many different options, but so many learning to be comfortable with a decision from information obtained here. You all are amazing and inspiration.
I hope everyone can keep on keeping on, making each day the best day they can make it, while we anxiously wait for the next new treatment to come out.
How many people take milk thistle for their liver mets?
Therese
0 -
liwi good news on scan results.
JLF and babs best of luck with Y90. Following your progress with this so hoping you both get great results. Babs lovely photo and positive news for your family.
Miaomix that is unsettling to read about their change in scanners. As if it's not stressful enough. A second opinion if in doubt.
Lisajo. I have just started Xeloda, an oral chemo, only 4 days in and no side effects yet. There is a thread if you look through All about Xoleda. Lots of people having success with it. It's an oral Chemo and my onc told me not to underestimate what a powerful drug it can be. We will see!
0 -
I’m convinced Xeloda is what kept my brain mets at bay. I was in it fir 5 years and my brain was good. Off fir 6 months and now I have 17 lesions. They are putting me back on Xeloda.
0 -
Cure-ious Thanks for the info on the trial—sounds promising. I've bookmarked it, and will absolutely mention it to my MO.
I have not had a biopsy of my liver tumors to date. When the mets were first found in Jan '17, they were so small, the Radiologist didn't have confidence they would get a good sample. Also,I guess they were in a 'hard to reach spot'. He opted to take a sample from a bone lesion on my iliac instead. I've been asking my MO at each visit when is it time to do another biopsy. She insisted that it is very rare for cancer to change, and we wouldn't gain new info from another biopsy. However, now that I told her that I contacted an IR from another hospital, she now says it may be time for a liver biopsy. Go figure!
Babs - I love the story of your DS and DD making amends. Your grandchildren are precious—what a wonderful gift to have them all together! Wishing you great success on your Y90 journey!
0 -
JFL cant wait to see how you go. I have been following your journey as it is similar to mine. Dx at 35 whilst pregnant Dx mets at 41 to bones/liver and left breast. Very interested in the Y90 and hope its something that is an option for me.
0 -
Thank you all for your support, but wouldn't a second option involve another pet scan done at a facility that couldn't possibly match the one in Jan? I don't understand....
In view of that fckd up report; NOW I understand the logic of having another check up in two weeks. They are being careful. I will take the 7.5 as long as the SE are bearable, if not, I have still the 5mg, and will switch to that....pronto!
The truth is that if afinitor stops working, I will have run out of hormonals. They would switch me to X—which I wouldn't mind as long as it works for me—or find me a trial. As much as I want to be on an Immunetheraphy trial, I need to feel confident in the scope and integrity of its premise and the doctors conducting it.
The drugs will have to fit certain logical parameters, which might all be unknowable, and now this pet-scan-gate has somehow undermined my trust in the impeccability of that institution....someone should write a book about the sagas we go through to just stay alive....
0 -
Babs - just popping in to say how happy I am to see your family all together and that you are tolerating the Y-90 well!
0 -
celebrate life—I've been taking Milk thistle and NAC alternatively and consistently for the last several years, hoping that it would accelerate the detoxing of the liver from all the drugs and junk I've been ingesting over a lifetime.
The benefits of N Acetyl L Cysteine supposely are:
- Helps Protect Against Liver Damage.
- Fights Against Cellular Oxidative Damage.
- Helps Prevent and Treat Chronic Obstructive Pulmonary Disease (COPD)
- Helps Treat Chronic Bronchitis.
- May Help Treat HIV.
- Can Reduce Pain and Inflammation.
- May Help Prevent Cancer. (obviously not in my case)
0 -
KC1010 - When I was first diagnosed, I had 7 different biopsies of various nodes and tumors in my breast. (diagnosed de novo and have had no surgery). I went for a second opinion at the Mayo clinic and they performed a biopsy of my liver. The MO there said that it was very important to make sure that the liver tumors were the same as the other tumors. She explained that no one dies from tumors in your breast, but you can die from the tumors in your liver, so it is VERY important to make sure that we were dealing with the same animal....I hope that helps.
Celebrate life - I used to take Milk Thistle, and then read that it could have effects similar to estrogen, so I stopped. The information from Dr. Google is confusing sometimes. My MO once told me to not take any supplements as there are no studies to show if they may or may not interfere with the drugs that I am currently taking....but I feel that I should be taking something to help my liver.
0 -
Miaomix - A second opinion generally would not ask for another PET.I think they might, however, reconsider Afinitor in light of the results you got.
Milk Thistle (Sylimarin) is da bomb for da liver.
>Z<
0 -
JFL - you go girl on Y90! Please keep us posted. Miao - what a nutty scan reading. I'd definitely question this more. See how you do on Afinitor @7.5, but note all your SEs. Watch out for your lungs or breathing issues. And you have 5mg to go back to as needed. X could be a good idea if Afinitor is not doing its job. It never worked for me - thus it's nickname A-phonytor. I am going back on x this weekend - starting at a lower dose to avoid pesky mouth sores. Robin - glad you are planning a nice trip! Z- watching out for you, when does chemo start? Has onc confirmed taxane cocktail? Rooting for us all!
0 -
Miaomix-it must have felt crappy to read that ambiguous report. "Probably?" What's up with that? Could your MO read it and show it to you? My MO reads my PETS and shows them to me, sometimes disagreeing with the radiologist. I have also heard him remark that it can be difficult to quantitate bone mets. I think a second set of eyes is needed.
Babs-it must have felt lovely to have your family together. Your grandchildren are just perfect! Did you have a Seder? Best of luck with #2 Y90. I am having one in May and feel reassured to see others tolerating it well.
JFL-congratulations upon completion of the mapping. Interested in your impression of the procedure. Right behind you in May.
Cure-ious-the CXCR4 trial looks so promising, thanks!
Best to each, and, may the force be with you. MJH
0 -
Kkrenz- thanks for the info. I'm definitely going to push for a liver biopsy. Did they find any differences between your breast and liver tumors?
At this point, I'm really hoping that my cancer morphed into her2+ so a new line of treatments open up to me. At initial diagnosis of stage 2, my cancer was her2+1. I was on a herceptin trial for a year, and then mets were found in my bones/liver/spleen about a year after the trial was complete.
0 -
MJH. Yes. I had 2 seders and I’m exhausted. But happy to have lived long enough to see my kids and grandchildren together!
Good luck with your Y 90
Bab
0 -
MJH-I had to ask for the Pet report, they didn't post it as usual on my portal. I think they were all extremely embarrassed for the mishap.
The situation gets complicated by my MO leaving MSKCC and me starting with a new one. He's the one that raised the dose in response, I suspect, due to the combination of elevated cancer markers and the “probable" results of the pet scan.
In their defense, however, I will get another check up in two weeks, which they will use to confirm my status and TX.
LALady, thank you for sharing your experience with A-phonitor. I've been very careful to stop taking it when a dry cough reduced my breathing and when I got a hitching and skin breakaout on my lower back. Good luck with X this weekend....I'm glad to hear, he SE from that TX have been manageable for you.
KC1010- I hope you get what you wish for, that a new TX opens up for you, and makes a big and long lasting difference!
0
