How are people with liver mets doing?
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So many interesting types of advice and information, I love this thread.
On Monday I will see my new MO for the first time. I wonder what my scans will show regarding my liver mets. I wonder what TX she will suggest. I wonder if it will be a clinical trial. Or a IV chemotherapy. I cannot count the things rolling through my head that I'm wondering about. It's a wonder we are not all as crazy as a loon with all the unknowns we deal with throughout our TX. 😲
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Grannax, I am excited for you. I think your new MO will be a good thing for you. Hopefully, you will be given a voice in the choice of treatments. I have found that I feel better when I my own opinions are considered during the decision-making process. I will be thinking of you on Monday. By the way, sometimes I think I am crazy as a loon!
Hugs and prayers from, Lynne
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Hello Ladies,
My mom got her test results since being on Kadcyla since October , her results came back as in her liver mets were getting worse, she only has 2 and they got bigger , her doctor suggested to continue Kadcyla , for another 2 months and see what happens from there , my question is has anyone experienced late results from the Kadcyla treatment ? I just want my mom to be stable , and the liver mets to go away?
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HolyHope, I am so sorry that your mother's liver mets are advancing, I do not have any answers and hope some one can respond to your question. Without taking anything away from your question, I am having advancement as well...but I have been on Ibrance since November.
Which leads me to my update. Up here in Canada, I don't live in a major centre so on a month by month basis, we see a GP with special education in supporting an MO in satellite communities. My appointment today was with this GPO. He showed me my CT of the liver mets and I am still in a little shock how big the largest tumour looks...6.5cm, I can't imagine how those that have had liver tumours as big as 20 must look. It is in Segment 4a there are 6 other smaller throughout the liver. He cannot give me definitive answers as to the next step but Ibrance is now stopped, I remain on Letrozole. I see the actual MO next Monday. I will ask about a possible biopsy then...I am pretty sure Y90 is not available, but I will ask that as well. I thank everyone for their support, wow this is a crazy ride.
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Kayla, seeing the reality of the liver CTs can be shocking and scary at times. In my observation, it is common for somewhat of a liver "explosion" when Ibrance fails, which is likely based on the path the cancer must take to get around Ibrance. However, that can easily be taken care of with your next treatment. I am curious what your MO's logic was in stopping Ibrance but continuing Letrozole in the interim.
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Thank you all for advice and thorough explanations on neuropathy and ice usage. As I understood from all this, my wife does not experience neuropathy from Taxotere - that is lympehema in extremities with swellings and harder skin. I think, as far as I have researched, best thing for fighting lymphedema is lymph-massages and compressing bandages - a long procedure but a really helpful one as we did it last time and it really worked.
I also agree with 50sgirl - your opinions are very important and you have to be heard. MOs spend with you just an hour (luckily) every three weeks, and you live with your bodies 24/7. And that gut feeling... oh, it mostly is right and how many times did I regret not listening to it:/
Saulius
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Kayla and Holyhope, I'm sorry to hear about your -and your mom's, HH- progression. Kayla, I had been stable on Ibrance / Letrozolefor two years before mets showed up in my liver. It was shocking, and I hope your next protocols put the brakes on!
Grannax, I'll be thinking of you Monday, too. No matter what, it should be such a relief to have an MO who is responsive, listens to you, and is caring!
I'm excited because my hubby and I never go anywhere (we have several old critters that we are nervous about leaving and no money...), but we are going to spend two days in San Antonio, my favorite Texas city, next week. My oldest friend will spend the night at our home critter-sitting the mob and will patiently answer my numerous texts inquiring about everyone's well-being. Can't wait!
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I love San Antonio!! Enjoy your trip. Texas road trips are always fun!!! Where do y'all live?
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Kattysmith, how exciting that you are going away next week. I hope you both have a lovely time!!
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Good morning,
JFL-I think the only reason the GPO is having me remain on Letrozole is to easy my mind as I await the MOs appointment on Monday; I do feel better taking it, rather than taking nothing for a week. That is only my guess tho.
Kattysmith-have a great time!
Grannax2-I truly hope that Monday’s appointment is exactly what you’ve been needing, it’s been awhile now
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Daniel, we live in Houston. It's only a 3 hour drive, but San Antonio is like going to a totally different world!
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Kayla, totally understandable for peace of mind. It does feel better to be on a medicine that is only partially or marginally working than nothing at all!
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good mornings friends. have any of you experienced pain in the liver area when lying down. It’s actually excruciating for me when I try to sleep on my left side. It feels like something is ripping away. 🤔 MO examined me and was not overly concerned. he said something about the mets pressing on the lining. I’m not sure of what he meant. I’m just curious if any of you had a similar experiences. It’s been a month since y90 so I don’t think it’s that but what do I know.
Love to all,
Michelle
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Y90 causes the liver lesions to swell and be surrounded by fluid in the beginning 5-6 months when it is starting to work. The pain/pressure against the liver capsule could be caused by that. I have pains like you describe from time to time usually due to everything being cramped in too tight a space in my abdomen due to liver size or constipation or some other unrelated reason. I notice that I may have more pain later in the day and when I sleep. I recently learned that the liver can ecpand in size by 50% during the day from eating, drinking and normal activities. I suspect that plays a part when I have pain.
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Thank you JFL! My main oncologist looked at me like I was being dramatic. Thanks for reassuring me
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Yes, I had a lot of swelling in my right side even months after my y90's. I look back at pictures it looks like a right side pregnancy bump! Yes I do have some pain from liver mets that are now growing again, not the ones that were TX with y90 but new ones that could not be seen when they did my TX almost two years ago.
I go to my new MO on Monday ( finally fired that quack I stayed with for too long) scans will be ordered first, I'm sure. Scanxiety off the charts.
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Grannax, I'm sorry about your scanxiety. I pray that you have as much peace as possible and your appointment goes really well. I'm thinking of you.
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Grannax, I hope your appointment on Monday is fruitful and positive. I also hope that your new MO is exactly what you are looking for. Please let us know how everything goes.
Hugs and prayers from, Lynne
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Grannax---Praying for your appt Monday. Keep us informed.
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Hi -
Just came back from a week visiting my sister and her family. It was hectic but I managed to get away to spend time with her during treatments at the Soon Shiong cancer center. Thursday was frightening as she had severe rigors for the first time as a reaction to the immunology (high affinity natural killer cells) and she had to have demerol to help control the shaking. But we made it to my niece's play that night so that was a win.
I wanted to share some good news. She had a PET scan on Friday. The last two CAT scans have been stable. The PET scan showed that the uptake from her largest lesion (about 1cm X 2cm) is barely higher than the normal tissue. In 2017, uptake was about a 6.5. Now it's 2.5 - 3. Oncologist says normal uptake is between 1 - 2. Head of clinical trial says she is not overly concerned with the liver right now but will be comparing PET scans from 2017 to this latest one to check on some bone... but overall, positive news as the brightest thing on her PET scan was a pimple!
The treatment has been brutal and I think my sister's quality of life isn't ideal (she used to run marathons and now is too tired to walk too far) - but we are very happy with the results. I wish you all strength, peace, joy and I pray for you often.
Joy
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coolbluewater - thanks for the update about your sister. I am glad to hear that the trial is working so well for her, but I'm sorry her QOL is so bad.
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Grannax thank you. I will forever be thankful for you. I’m praying for your appointment and you.
((HUGS))
Michelle
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CoolBlue- Can you tell us more about this trial, how it is designed and what your sister had to go through to be evaluated for acceptance? If it is the trial described in the link below, then it was just started in 2017 and will enroll only 18 patients from all types of solid tumors, so we are fortunate to learn the response that someone with MBC has to this new type of therapy. thanks!
https://immuno-oncologynews.com/2017/01/31/nantkwe...
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Hi Cure-ious,
That is the trial!
My sister's cancer changed to triple negative and her previous treatment failed. I think that was the requirement for enrollment into the trial. Her MO at that time, Dr. Link, had a connection to the center and I think was able to expedite her acceptance into the trial. From what I understand, it is a 3 week protocol - 1 week oral chemo, 2 week IV chemo and hank infusion X2, 3rd week chemo and hank infusion 1X. The trial goes for a year and then maintenance for a year (which will be oral chemo + hank every other week). I'm not sure the exact chemo she is on - it is metronomic chemo and involves blue pills, pink pills, and IV.
Her QOL is so-so for her, not dreadful objectively. But then she was always super active so it is all relative. She is not a fan of napping in the afternoon when she could garden, bake, or hang out with her extremely rambunctious children! The nurses say you have to be tough to get through it all and it is true.
Anecdotally, her current MO has said that metastatic breast cancer has responded best to this protocol. One of her friends has seen a 3 inch reduction in her 7 inch liver met!
I wish that all of you could have such excellent care as she is receiving at the center. The nurses, MO, pharmacist, social worker, and physician's assistant stop by every day she is there to talk to her. And when I am there, they spend time with me too. She feels very fortunate.
If you have any other questions, please let me know and I will ask her.
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Hello liver metsers.
Anyone on Keto or low carb diet that induces ketosis?
I would like to try this and plan to talk with my MO this week about what she thinks. Hoping this diet will give me more energy, unfog my mind and generally make me feel better.
Just curious how the ketones impact your liver, especially if you are in treatment for liver mets.
I also plan to call Pfizer to see how ketosis impacts Ibrance.
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Sandybeach....for what it's worth you might want to take a look at this video regarding low-carb diets and cancer....
The interview is with a famous NY oncologist that reveals how many years ago his friend, well know MD Robert Atkins, was convinced that he could treat cancer patients with his famous ketogenic diet, but he was unsuccessful and had to shut down the cancer treatment program.
MO Nicholas Gonzales was my first MO. Educated at Cornell, he worked at MSK as a bone marrow transplant specialist before starting his own private practice. Unfortunately he died unexpectedly from an heart attack 2 months after I started seeing him, but he had by then given me a precise and individualized dietary protocol that I still follow....
Basically, he told me that I could eat everything I wanted, except processed foods, but NO meat and coffeewhatsoever. Everything I eat has to be organic, and after further research I now eat primarily imported foods because the FDA has no guidelines for the amount of mycotoxins in our food supply, and in my humble opinion that's the root cause of ALL cancers, since they feed various mycotoxins to creatures to induce cancers. Like cancers, mycotoxins contamination's are impossible to eliminate without our own distruction....sounds familiar? BTW...Taxol is a very powerful antifungal.....
He also prescribed a large amounts of supplements that were specified just for me.
I gave this information to Zarovka, at the time when she was following Luongo and starving herself before and after her chemotherapy sessions....I don't really know what exactly killed that beautiful soul in the end, but it's obvious that low-carb was not the answer in her case.
Low carb is very good, however, for a slew of other serious health problems, so it can be overall beneficial....I get my carbs from fruits and vegetables...legumes but almost no grains. No alcohol. I've recently discovered Beyond Meat hamburgers and I'm in heaven...they are better than the real thing without the growth hormones, mycotoxins and cruelty. The founder is a conscious human being and I trust him, his foods and his mission....Good Luck with whatever your research leads to....
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Hi Miaomix. Good video and thank you for responding.
The video supports my gut feeling that ketosis is not the way to control cancer cells. I was just especially curious how ketosis might impact those of us who have liver mets. On the keto plan, the liver has to use all that ingested fat to produce ketones..so what would happen if the liver was impaired with mets (or under treatment). hmm..
I am 5 ft 5 inches, a stable weight of 130, non diabetic, eat organic when possible and walk as much as my tired body allows. So ketosis would not have been for weight control..thinking it would provide more energy and clearer thoughts. Even stop micromets..
I have been reading, reading and reading. The conclusions from my novice interpretations are:
1. Low carb diet (100 g/day) to maintain health would be better for me; ie, continue glycolysis versus ketosis.
2. Your body finds a way to produce sugar (from muscle?) even in ketotic state. Therefore, if cancer cells need sugar..a new pathway would eventually be available. I guess that would make my liver mets estatic.
3. And cancer cells are smart, if they can't get their nutrition, they will find another way. Just like they find a work around with treatments.
Sandibeaches57
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yes Sandybeach, cancer cells are unfortunately very smart....they have outsmarted some of the best minds, doctors and oncologists from all over the world for more than a hundred years....
it's hard to believe...that with all the research, clinical trials, and billions of money spent, no one has figured out yet why and how 1 in 2 people today will get sick with cancer.
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Hi Sandybeach,
I have been on the Keto diet since the beginning of the year. I was feeling terrible, my sugar was through the roof, I lacked energy, had foggy brain, and generally felt unwell. 3 months later, my sugar has normalised, I have lost 7 kilos, I am walking every day (didn’t have the energy before), my head has cleared and I feel great. I was on blood pressure meds, don’t need them any more. I feel my quality of life has improved 200%!
I researched the diet carefully before starting, and found many of the requirements go against what we are taught about what is OK (eg, you need to consume a lot of salt and potassium) but the results speak for themselves. My oncologist says my liver is in great shape and to keep on with the diet.
I don’t know if it will help with my cancer in the long term, but meanwhile, I feel great and my doctor and onc approve - hope this helps.
Jackie
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Thank you Kanga Roo. It was extremely helpful to hear your MO was supportive as it appears ketosis has given you an improved health benefit.
When I was researching the ketosis diet, I couldn't find any literature on its impact on those with liver mets, ie, increased damage to a healing liver. I certainly don't want to harm my liver further, especially, if it is trying to heal from liver lesions and also taxed with the additional job of using fats to make ketones.
I will still discuss this glycolysis versus ketosis concept with my MO. But I suspect she will say don't change anything as I am stable and last scans showed no evidence of active disease.
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