Progression to liver

[JMMK]

I'd like to know what is standard practice. Progression to liver and.my oncologist wants me to do 6 rounds of IV chemo. Question : Did you contintue ex (Verzenio)or take oral Chemo such as Xeloda after iv chemo?I have a biopsy scheduled. Any with experience with progression to liver it be great to hear you opinions and advice. Your help is much appreciated. Thank you and Godbless

[Bettybuckets]

hi dear- first it is a shock to hear that MBC had progressed to the liver! I first heard so it lover spread in feb22 but then had another kind of scan which refuted that it was in liver…. :so .I stayed on the same cdk4-6… but 6 months later then had an abdominal CT scan last Xmas and there it was.. still! Lobular hard to see on scans. So at Xmas I changed to capecitibine cuz it is oral and I was about to go to NZ for a few months. It was a pain with HFS making walking difficult. But I really didn’t want to go back into iv chemo. Now it seems to be working so have to endure sore feet until it fails. We probably all will get through a lot more drigs than we want to by the time this is over. Seems like the drs are trying to find the meds that will most slowly kills us… sorry about the gallows humor… sometimes I’m a truth spitter. Even though this is all deadly serious stuff we are all just trying to give and receive info -and a bit of encouragement. I hope I did that for you.

[NPmary in reply to Bettybuckets]

Thank you so much! I needed humor today (every day would be great) - humor about this stuff used to come easily and readily to me, not so much now. 🤣😆🤣

[Iwasborntodothis]

I had liver progression diagnosed about a year and a half ago thats when we switched to IV Taxol. My doc says that the tumors are in the part of the liver that don't effect function and my blood test results (ALT, AST?) supported that. It was not until the dismal failure of my 8 weeks on Carboplatin that this changed and I developed horrible/wake you up at night side pain and swelling in my liver and blood tests started to go bad. We switched to Trodelvy and now everything is back to normal. So, I guess my point is DO NOT read all of the horrible stats or google liver mets because those are pretty scary and keep an eye on those blood results or ask that they are provided.

Allison

[13plus in reply to Iwasborntodothis]

I am sorry for your experience but wow, that is so good to hear you had such a positive response to hte Trodelvy after that experience with the side pain that would scare the bejesus out of me! How are you feeling on that treatment?

[Iwasborntodothis in reply to 13plus]

Thanks for asking. I am getting used to Trodelvy and it is working very well...liver results all normal and CA15 dropped another 50% last cycle. Liver pain gone. Side effects for two weeks are rough but the week off is a dream and I eat myself back up to the lost weight (typically 4 or 5 lbs) and I can do fun things. The two weeks on I am nauseous and vary between constipation and loose stools. Can't accomplish anything and cant really get too far away from a restroom.

We are planning trips away from the awful Phoenix heat accordingly.

I think this will be one of the miracle drugs we have all been praying for so I want to document this for future "me". They say they can moderate side effects by increasing infusion time and can lower dose if necessary.

[13plus in reply to Iwasborntodothis]

Thanks so much for sharing. It's interesting to hear about the 2 extremes of each cycle. Thank goodness you get a regular week of joy! I didn't realize it was an infusion drug either

[Ursula_I]

Hi

Sorry to hear this. I was diagnosed with liver lesions as part of my extensive spread when MBC was diagnosed. I had a liver biopsy, ER- HER2+ so hormone therapy no good. I had iv Chemo docetaxel (in the same family as Taxol) alongside Herceptin. It did really help with the liver and my function is much more normal now. This was 18 months ago. After the six rounds (I think) of Docetaxel I've had several drug changes, always with Herceptin. Currently I am on Enhertu. That is a regular three-weekly infusion, side effects not too bad. Worst is the hair thinning (you will slso get that with Taxol)

I was in a really bad way when diagnosed Aug/Sept 2021 and I'm still here, still trying to enjoy life every day!

Good luck with everything, I hope you and family are being really well supported.

Lucy x

[Garden-Lady]

I am sorry to hear this friend.I have been living with metastases in the liver since 2021. Four months of IV Paclitaxel reduced somewhat, but now scans show some progression.

My oncologist has put me out to pasture now.

I am following the full alternative protocols described in Kelly Turner PhD's book Radical Remission, as well as mistletoe injections, mushroom supplements (Turkey Tail and Mayake), a Blue Zones plant-based diet, plus several hands-on therapies such as cranial sacral osteopathy, sound and reflexology. I live each day as it comes. I practice gratitude, and am doing everything in my power to keep on keeping on.

I grow healing herbs in my garden and this brings me joy.

Find your people for support. Check out videos about cancer survivor Stamatis in Ikaria, and Joe Fremont.

I must say, I am relieved to be out of the dilemmas about chemical medicine, and all the dreadful side effects I've suffered, and am still dealing with--which the doctors have been gaslighting me about for years.

[NPmary in reply to Garden-Lady]

Just wondering how long have you had metatatic breast cancer a d when did you stop taking traditional chemical therapy, do you still have scans or blood work done? It must have taken alot of bravery to make these changes. Wish you the best, Mary.

[Garden-Lady in reply to NPmary]

I've been living with MBC since 2020. Been through several protocols. It was my onc who decided to stop.I've been doing the complementary therapies of different kinds for 11 years under the care of a state registered medical herbalist, and an NHS GP who also prescribes the mistletoe.

[NPmary in reply to Garden-Lady]

Im surprised - may l Sk why the onc decided that and when???

[Garden-Lady in reply to NPmary]

It was about a month ago. He said he didn't think the cancer would respond to further treatment, that didn't think I could cope with the side effects of more chemo, and that I should go home and plan my end of life choices.

I was not a happy bunny! But now I've decided keep on keeping on, and give it my best shot, according to all the other books and protocols.

[NPmary in reply to Garden-Lady]

Good for you!

[ba5083 in reply to Garden-Lady]

I ordered Radical Remission last week and awaiting the arrival. I want to finish "Eat to beat Disease" by Dr Li. Curious if you follow any of the FB pages on blocking pathways?

[Garden-Lady in reply to ba5083]

Not heard of the FB pages, but will check out any you suggest. X

[ba5083 in reply to Garden-Lady]

I have several that I follow for natural or holistical approaches. I think you have to request permission on all so please read the questions. You will definitely be approved.

facebook.com/groups/1861491... - Always hope cancer protocol

facebook.com/groups/6975460... - This is Jane McCelland's (How to starve cancer)

facebook.com/groups/5015156... - Breast Cancer Pathways

I will DM you as well if you are interested in some other material I have picked up along the way

[Colacancer in reply to Garden-Lady]

Wow. I am. Turkey tail and cranial sacral fan also. I'm doing blue zone and Barbara O'Neil s protocol. No sugar , even fruit. Trying to oxygenate. I love your attitude.the side effects are horrible. Have you ever considered Feca. I believe what's its called Cannibas oil??I'm on Ibrance and Examaston. Only 52 with a severely autistic 10 year old. Im a huge fan of acupuncture too. Wow does it help me . Ut when they say diet makes no difference.. oh Good lord.. they just want to bomb ya. So awful. I pray we all keep on trucking. Thanks for being so cool. I would be doing straight clean living if I wasn't fearful for my son. So how do you get scans to see if you've progressed or notSincerely Nichola

[Garden-Lady in reply to Colacancer]

Hi Nichola, so good to hear from you, though sorry you're in this situation too.

One of my sons is also on the spectrum, though I'm 20 years older than you.

The onc said they'll not do any more scans. So I replied, okay, I'll monitor the things that I can feel, such as my digestion, energy, pain, hair/skin/nails, and zest for living. It's early days. I may seek a second opinion. Living in the UK, the NHS is free, but you get the doctors that work in your local hospital.

The support of family and friends is making a huge difference at the moment.

[Garden-Lady]

Sorry, it's Mike Fremont. Cancer survivor, centenarian.

[Best521]

After 16 cycles of Ibrance and Letrozole, I had progression in my liver. Started the postMonarch trial on May 1st, which was continuing with Verzenio or Placebo and Fulvestrant combination after failure on a prior CDK 4/6 inhibitor. My scan on Friday showed progression again. Today my treatment team offered three choices, Paclitaxol, Xeloda, or a new trial with Trodelvy and Keytruda combined . The trial had 18 spots left. I took the trial. After a two week washout I will start the new combination. I was advised hair will fall out, but we could try the cold cap. Excited to be trying one of the new ADCs along with Immunotherapy. It feels like a good one two punch to Cancer. 💪

[Iwasborntodothis in reply to Best521]

please ready my Trodelvy posts - I am having great results and I have a friend with a different cancer who is thriving on Keytruda - good luck

[Best521]

Thanks yes I have a friend who is being treated for another cancer who has said the same about Keytruda. She knows several people in her group who have had success with Keytruda with little to no side effects.