How are people with liver mets doing?
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Herceptin is a monoclonal antibody. This entire class of drugs has significant immunomodulatory effects. My doctor is a leading researcher in immunotherapy. If I were HER2+ he would include Herceptin in my treatment ... I believe it would be the ideal system treatment to follow immunotherapy ... if I were HER2+. I haven't studied this closely. He did not point me in this direction (I am HER2-) so I cannot summarize the science, but my sense is that Herceptin is da bomb, if and only if you are HER2+. But it is a good question ... will keep reading and asking questions. Thanks!
We learn more and more about the immuno-modulatory activity of effective drugs. My current working hypothesis is that when any of these drugs work long term it's because they have triggered an immune response. And if they don't, the cancer just mutates around them very quickly.
>Z<
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Cure-ious - thanks for the clarification on the abe + keytruda trial. 40% is a home run. Z is super smart, but it's draining being your own advocate 24/7, so thankful for all your sage advice. As for me - back in the big chair for month 5 of A-train! I am looking at getting TM's to 2 digits now. Will keep all posted - my right liver micromet is too small for Y90. But if it's not dead from A-train, may go to low dose x + faslodex. And consider getting an immumo liver heat up in Japan.
But let's see what scans say at end of Jan. If anyone has Abraxane questions - please PM me. I am also taking IV vitamin C and NAC. Boxing Mr C in the ring. 20lbs down so had to buy new jeans. Not a bad Xmas to be in college size. Still working part time. Only me and another man taking A-train are working in my chemo "class" so I think determination and positive outlook are helping a lot. Smile!(()) Claire
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After gall bladder surgery and 5 days later Mets discovery, I am 10 pounds down to 181....but I am 5'10. With liver squished against abdomen, have to eat small meals and started drinking ensure. Trying to maintain 185. Steoids for nerve pain from spine met and Ibrance not gaining weight as I expected, Going tu o eat prior to ensure to see if I can get real good calories first. Drank 2.5 ensures yesterday and still dropped 1/2 pound but only ate a little, sandwich, charro beans, hot dog...
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Go Claire - Clearly you are not backing down.
z
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Daywalker,
If this the article 😊
http://www.dailymail.co.uk/health/article-5165757/...
This is the drug
https://www.cancer.gov/publications/dictionaries/c...
And there are several solid mets studies in Phase 1a/b.
https://clinicaltrials.gov/ct2/show/NCT02627274
I have scanned their inclusion criteria - does not stipulate HER status or Herceptin.
I agree - looks very interesting. Thank you for posting
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One of these times they have to hit the jackpot with a new drug. There is every reason for optimism.
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Wildplaces -
The trial you reference is A Study Evaluating Safety, Pharmacokinetics, and Therapeutic Activity of RO6874281 in Participants With Advanced and/or Metastatic Solid Tumors. It doesn't require HER2+ because R06874281 is given alone and not with Herceptin. The article refers to a protocol of Herceptin and R06874281. I think they are guessing that the drugs are synergistic, but including Herceptin has the added benefit of being a known effective treatment for HER2+ cancer and therefore safer than a purely experimental treatment for HER2+ patients.
I don't see any trials in the US that include Herceptin and are recruiting, but the drug is very interesting. Interleuikin-2 is used in the expansion phase of the immunotherapy that I am doing. Here is more information ...
Anti-FAP /interleukin-2 fusion protein RO6874281
A recombinant fusion protein comprised of a human monoclonal antibody directed against fibroblast activation protein-alpha (FAP) linked to an engineered, variant form of interleukin-2 (IL-2v), with potential immunostimulating and antineoplastic activities. Upon administration of RO6874281, the monoclonal antibody moiety recognizes and binds to FAP, thereby concentrating IL-2 in FAP-expressing tumor tissue. Subsequently, the IL-2 moiety of this fusion protein may stimulate a local immune response and activate natural killer (NK) cells and cytotoxic T-cells. FAP is a cell surface protein that is expressed on a wide variety of cancer cells. IL-2v cannot bind to IL-2 receptor-alpha (CD25, IL2Ra) and does not activate regulatory T-cells (Tregs).
>Z<
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Daywalker, I think that this is kind of a longstanding question: years ago I was a dinner with some oncologists from FHCRC, and they were talking about the Herceptin trials being done so long ago and that they showed efficacy but did not get good correlation with level of HER2 expression. That must have been straightened out by now (ie, do you need to have high levels of HER2 to benefit from herceptin?), but maybe not, because nobody was going to pay money in the modern era to go back and do that control properly. So the answer seems to be: MAYBE, but we'll probably never know because nobody is going to pay to do that trial...
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Claire! You rock! I love love love your attitude, and I can feel the empowerment that must comes just with you writing those words!!
As you may recall, my colleagues and I are in the midst of a prolonged gender-discrimination suit, and heading into depositions next week, can you believe it? On top of working, shopping, cleaning, baking, and trying to get my daughter out of the wildfires
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Claire so good to hear from you. Thinking of you and praying all best outcomes. I too have started to experience the lack of appetite. Nothing else will fit in there. Just keep thinking...when will I have this baby! I think I may have started to waddle. I know I have no room for weight-loss starting at 105 pounds. Trying to eat better and more. Yesterday and today felt easier which gives me some hope that maybe Keytruda might be doing something.
Always more to say...take care everyone. And give thanks to nose hairs if you have them. Another thing I took for granted. Holding my head high not for any noble reasons. Just to keep the snot off the ground. Yikes!
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Cure-ious - It seems odd not to do a trial of Herceptin on HER2- if there might be benefit given that it would greatly expand the market. Someone must have done it or proven in the lab it wouldn't work. Interesting discussion.
You rock. What a load of non-cancer related activities on your plate. The best way to truly win the fight against cancer is to ignore it. Definitely.
Kaayborg - 2 good days! Very interested in the Keytruda experience. Any side effects?
>Z<
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Met with the IR and I’m going to do the Y90. The mapping will be in January. The rt side Y90 will be in February and the left in March. I’m hoping it’s as effective as the IR thinks it will be!
Tomorrow I get the ecocardiagram to make sure i can do Doxil Thursday night. I’ll also get an injection to raise my blood counts both tomorrow and Wednesday also to make sure I can do the Doxil
Babs
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Go Babs. Many are following your experience .... consider posting on the Y90 thread.
>Z<
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So, there is an odd report out in Nature, showing that an old anti-alcoholism drug called Anatrace may be a very effective killer of cancer cells.
The action of the drug was not known previously, and they show it is an autophagy inhibitor, which is a hot category for new drug development.
Here is link to the Nature story:
https://www.nature.com/articles/nature25016
Also a write-up in Daily Mail:
http://www.dailymail.co.uk/health/article-5168897/...
Well, problem is if it works, there goes the idea to sit down with a nice glass of wine...
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Cure-ious - Yep. That's where I draw the line. I'd rather die.
>Z<
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Cure-ious - Yep. That's where I draw the line. I'd rather die.
>Z<
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Cure-ious- this was known as Antabuse (disulfiram) and drinking with it made you very sick. Maybe if it works well you could take some vacations here and there for a drink. I love the “repurposing “. Finding drugs that actually kill the cancer cell or induce it to commit suicide vs just pausing them in G1 would be very welcome.
Thanks for that- I’ll try to read it tomorrow.
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Hi Hi,
I took a break from posting but have been following along.
Babs, I am also on Doxil (4th round) and am finding it a fairly tolerable treatment.
Kaayborg, so glad to hear that you have been feeling better the past couple of days. I was in serious liver trouble in August but Doxil has knocked the beast back significantly and I have been enjoying less pain and being able to eat. My skin stopped itching which was a huge relief. I burst out laughing when you said to give thanks for nose hairs!! So true! Quite sick of my dripping nose and love affair with Kleenex.
Z your trip to Japan boggles my mind and I continue to be inspired by your research and courage.
Thank you all for the smart, sassy and spirited sharing. I feel so honored to be with this group.
Kimberly
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Z Brits are doing it inManchester
https://www.hra.nhs.uk/planning-and-improving-rese...
And Cure-ious - yes Herceptin may be undersold...jury is a little out on it.
This is the simple version that you soooh did not need ....but the ref hold.
http://www.cancernetwork.com/her2-positive-breast-...
Now I will leave RO6874281 with the hope that it will do what it's engineered to do.
😊🌷🐣
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Daywalker, Cure-ious and Z ohh - I could politely be told to bugger off.
Yet - a little old...
https://clinicaltrials.gov/ct2/show/NCT01275677
At least one of a few places looking at Herceptin in low HER.
Z s job to spell it out - but in a nutshell, the breast cancer stem cells of HER negative tumours may express HER amplification in a particular bone environment ( back to seed and soil, or just round and round) 😉 And yep there is a multiple letter mech. behind it Rankligand being part of it.
...having the Manchester guys tie Herceptin to RO6784281 is not silly at all.
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Babs. I just hope and pray your y90 will work as well as mine did. Do you stay on Doxil while you're having y90's? Keep us updated. I have a PET in January,that will be 8 months out from my y90's, and one year on Ibrance/ femara. I hope it shows continued improvement.
Is doxil the same as Adriamyacin, the red devil? I took that way back in 1993. I didn't have much trouble with it, although that was when I was only 44. I hope both TX work well for you.
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Wildplaces- thanks for finding the Herceptine for the Rest of Us trial. It's been open for 6 years. Published results sure would be nice.
>Z<
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Claire, you are so awesome, riding the A-train in first class! Waiting eagerly for your good scan results and normal TMs! I really think you have a good chance at both.
Marylark, I'm not sure my answer to your question about liver pain will be of much help. Bad pains: When I had huge liver tumors undiagnosed I had an intermittent "tummy ache" just below the sternum and a few episodes (over a few months) of a sharp cramping right side ache that hurt more when I moved. When Ibrance + letrozole were failing it hurt when pressing under my right ribs. Good pains: When Taxol was working I felt occasional twinges below my right ribs. My first two days on Xeloda (working) I had a huge ache of my whole liver that hurt when I moved or breathed, but it got better in just a few days. Correlating these pains with TM and treatment history helped me know what they meant, more than the sensations themselves.
About individualizing treatment, Bluebird, it has been disappointing for me to learn that even at the best places we do best if we can stay on top of things and point out things (tactfully) to docs. We shouldn't have to do this, especially when we don't feel well! I sometimes write up a summary of important points about my medical history and what I have learned to use when talking to docs, hoping this will make it easier for them to think about a more tailored plan. Also, some people have a PCP who can help facilitate and keep track of things. Also, can't you just start the darn pills without the training session?
Lisbet, maybe by "palliative" the nurse just meant that the Taxol treatment would help the pain as well as shrink the mets?
Thank you, Z and Cure-ious, for the info on the synergy of radiotherapy and immunotherapy. So I guess I should plan on asking about immunotherapy to go with Y90 if/when I do it? I still don't understand why I was told the germline mismatch repair alteration would not mean tumor microsatellite instability and therefore vulnerability to immunotherapy. Will be sure to check MSI if I get a biopsy. Thanks for the links, Cure-ious.
Z, my insurance (different years and companies) denied both F1 and Guardant as "experimental" but in the end I only had to pay a pittance as the testing companies wrote off the rest. That's how the game is played. Was your pharmacogenomic test done in Australia similar to the Genesight testing? Seems like we would need to know these things. There you were with a toxic reaction, and who knows how long it would have taken the docs to figure it out. I had so few side effects and so little response to Afinitor that sometimes I wonder if the reason had something to do with insufficient metabolism of the drug. I learned that a close family member had both alleles for no CYP2D6 activity, and therefore I may have at least one like that, and it is interesting (and maybe tragic) in light of the tamoxifen failure I had. So I want to do such testing. Do you know the name of the test Mayo uses?0 -
Schoolmom and kaayborg, if you have any people around saying, "Let me know if I can do anything" you could ask them to make food for you that is better than those pre-made drinks. The book The Cancer-Fighting Kitchen by Rebecca Katz has great ideas and recipes, and good lists of which recipes to use for various situations, including yours. Kaay, yes, nose hairs! During my Taxol time I carried classy, soft vintage hankies with me. Lace, embroidery, etc. May as well have a bit of art and style along with the drippy nose, I figured. Find them at estate sales and antique stores. I so hope your two days of feeling better are the turning point to success!
Babs, ok, you have a lot going on in the next few months. Glad you have a plan. May your Doxil be kind to you. Kachincolor, hooray for Doxil success and your feeling better!
Regarding Her2, there is also the whole realm of Her2 negative but Her2 mutated, and there are drugs for this, such as neratinib, which is on my list. Her2 mutations appear to be more common in ILC than in IDC.
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Good evening - I have pages to catch up on - a few comments - a post for here - then some research to do. Hurrying but will try to watch my typing better than last time. wow were some of those words questionable!
COMMENTS - Z wrote, "What you want is a complementary oncologist with medical training in oncology." This is what Dr. G is working toward, he is oncologist, hematology who moved to Alaska to train under a complementary naturopath, meaning the allopathic / complementary medical fields merge into integrated oncology that builds the patient health. Dr G had seen enough, I talked with him for hours at a time over the years. I found him and committed my care to him after dealing with cancer on my own for a few years, I was that afraid of my sensitive system not living through chemo. I am glad I waited. That said, he made mistakes, his team made mistakes, I made mistakes. But no one gets a perfect anything. I may follow him to Alaska the way it is going. The world needs more doctors like this man.
Z wrote, "I was dizzy, tired, and had terrible dehydration. Thirsty all the time, dry mouth. And, of course, my veins disappeared" This was from loratadine but I had that from the Xeloda. I am still recovering from anorexia, parched mouth, exhaustion, dizziness, full out dehydration. Have been off since November 20th and now seeing the light. The only good outcome from Xeloda was it put the lupus / mixed connective tissue disease into dormancy. Hope it was enough and holds.
I have notes from my new oncologist to share - will begin new post.
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Title of this post is "This can happen to you...." so I strongly suggest you get your MOs notes sent to your primary care and have them printed so you can review.
my comments are in ( ) after his notes.
First off, he had me noted as wheelchair bound. I made it clear I walk but have to navigate expansive buildings in the chair to save coughing and blacking out or exhaustion at the end of the effort.
OK
Doctor's notes in his Plan:
- I had a detailed discussion with the patient and her spouse. She appears to be aware of her situation. (even I did not know exactly what that means until I read further)
- I explained to her that her condition is borderline adequate for treatment with aggressive chemotherapy. I would consider paclitaxel which is standard of care for metastatic breast cancer to the liver after endocrine therapy. She has been offered combination everolimus and exemestane (A/A which is also what the oncologist I loved had given me a choice of, he wa at the CC that didn't have a permanent team and he was leaving after two months)
- While reasonable, this would not be my first choice but she wishes to try this. (He did not say that to me. I asked what would he recommend if I didn't use the Taxel and he said what the other onc had chosen, he said this enthusiastically so all very misleading. Especially after he basically discouraged me from using the chemo infusion at all since he thinks I am too debilitated and weak.)
- If so, I have advised that she discontinue Xeloda since I would not favor combining chemotherapy with endocrine therapy. (What? Isn't Afinitor chemo and isn't Aromasin endocrine? What???!!!? And isn't he a breast cancer specialist? And I insert these links from my recent research..... http://www.clinical-breast-cancer.com/article/S1526-8209(11)70872-2/fulltext and http://ascopubs.org/doi/full/10.1200/jco.2004.12.128 which fully endorse the combination of Xeloda with taxane based chemotherapy, ie Taxol which is paclitaxel.)
- The likelihood of benefit is rather small. (HE DID NOT SAY THAT TO US. HE DID NOT!)
- She would like to try this before proceeding with paclitaxel. (This is true but I would like to proceed with the best choice for me now, maybe one that is going to work, in his opinion.)
- She would like to try this before proceeding with paclitaxel. (But I wasn't given the true opinion from the medical expert. Though I do know my other traveling oncologist favoured this, so I did lean to the A/A before chemo.)
- I had an open discussion regarding her poor prognosis. (Hubby and I both say not at all true. He did ask if anyone had ever spoken with me about the seriousness of my condition, I said no.)
- I recommended that she have a living will given her poor prognosis. She agreed to this and will meet with one of our counselors later today. (He SAID this was standard procedure whether they used hospice in a few weeks or years.)
- I also discussed with her that if we do not proceed with chemotherapy, palliative care with hospice is also a reasonable option given her overall condition and needs. (He said he would not do palliative care and chemo or the A/A, one or the other. And that was when I told myself I was not going to cry in front of this man. I had the feeling of doom only once during the session, that was when there was the ultimatum, choose chemo or choose palliative care and no chemo.)
Further notes which were NOT IN HIS NOTES and I think that is because it could get him in trouble:
- We discussed TACE and he said I am too weak and that doing TACE before ever having chemo was utterly ridiculous. He obviously does not consider Afinitor and Xeloda to be chemotherapy.
- I wanted to discuss their SIRT therapy but he didn't get to that and I forgot. One of the reasons I chose the place wa their SIRT therapy. I will be seeing an integrative oncologist there, just have to work it out.
- When I called to have intake I made it clear I wanted the testing to see what chemo would I benefit from, as the Xeloda did not work. He did not address this and I forgot after being in his onslaught of questions about all the doctors. See last numbered note.
- He told me that no one in his care felt like I did, the ones with liver lesions were functioning fine and walking around. Which brings me to the ACS page on liver cancer symptoms of which mine included feeling full after small food intake, liver pain, exhaustion, losing weight without trying, nausea, vomiting, liver pain, swelling in abdomen.
- He was completely surprised that I had had radiation to the broad neck basin and the right bronchial tube beneath breast. He said then and there that he did not agree with the other oncologist or integrative oncologist on their "Mixed response" and he thinks the Xeloda had never been working.
- I told him about the pain in my back shooting from 0 to 9 then tapering. No comment.
- I told him about the pneumonitis that could not be treated due to my new full-on prednisone allergy. No comment.
- Unknown prescription.... He did not discuss this one with me at all, I don't even know exactly why Hubby brought the bottle home from pharmacy. But the MO prescribed dexamethasone which is yet another corticosteroid and I can't take it.
- Between the surprise of my having radiation and the lack of knowledge of the allergies, I think he did not spend much time on reading my medical records before seeing me.
- His notes on a sheet consisted of a list of oncologists I had been running to to get opinions or treatment, and I have had only one primary oncologist, he sent me to a researcher in Indy and to one in Ft Wayne. Then the two traveling oncs. And my PCP and one ocn years back who was only for tests. But this new onc spent the first fifteen minutes on these doctors and challenging me and not listening until I called him down for that and said I was trying to explain. Then he calmed down. Oh, she bites.
Mistakes in my file already. Nurse related. Doctor related.
- Nurse has me losing 40 # in 9 mo, was actually 50# in 8 mo and 23# in 3 weeks. I feel this is very important.
- Nurse - No pain when swallowing. OH YES I DO HAVE THAT.
- Nurse - No trouble swallowing. Certainly, true with nodules in thyroid protruding into throat. This info went to the thyroid surgeon, darn it.
- Nurse - No nausea. YES.
- Nurse - No vomiting. Yes, yes vomiting..... about 5x a week I told her.
- Nurse - No taste changes. Yes.
- Nurse - nothing sounds good or tastes good but I keep trying to get a few bites down an hour and am so full from that that I cannot eat more. But this was NOT recorded and I think it is very important.
- Nurse - Does a glass of wine a month and seldom then equal social drinker?
- Nurse - No family history of malignancy --- I told her mother, maternal grandmother and grandfather, half sister all cancer.
- Doctor noted no palpable lymph nodes. I can feel them, moving in throat and supraclavical. My PCP can feel them. The rheumatologist felt them.
- Doctor did not do a breast exam or look but writes "Symmetric bilaterally" while I have had 3/4 of right breast removed from the inside.
- Doctor writes abdomen normal, benign. I ask, does this mean I don't have honking cancer lesions in my liver?
- He did not see me walk and thinks I cannot I guess but writes normal gait.
- Doctor impression "Metastatic breast cancer to lymph nodes, lungs and liver." I don't know if the lungs were ever in my records, I cant find them but Dr. Miller in Indy thought the Faslodex cleared my lungs so I will give this to him though I don't think that is what he meant.
- Doctor impression says persistent cough that is most likely secondary to recent treatment with radiation. I disagree, the cough began Summer 2016, radiation was Spring 2017. The nodules in my throat can be a problem. And the COPD that is actually mild. The cancer all along my bronchial tubes and esophagus was a real reason for the cough. But he says radiation and doesn't want to do anything about clearing that up?
My point is this doctor would just leave me to drift to sea on the iceberg, imo. It is in his writing.My other point is, how many mistakes in our file are they allowed?I think everyone should really know what your oncologist thinks of you and your prognosis before continuing further within the graces of their care. Liver lesions and stage iv cancer does not have to be a death sentence. At least not right off. And we deserve someone in our corner who will not give up on us.I am hoping to remain at Goshen CC but to have a different oncologist there even though they are not breast cancer specialists.
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ShetlandPony, I'm being treated at Mayo (Rochestetr, MN), and my team used Foundation One. We're now also going to have Tempus do sequencing, too.
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It turned out the liver biopsy was negative, then last June they decided it was in the liver again and in spite of MRIs, Echos, etc. the biopsy was negative. Now here we go again. After a PET scan they say it is now definitely in my liver in several spots and also quite a bit in my bones. So... another biopsy. I get results on Friday. It really is a roller coaster ride. I'm accepting the diagnosis for now and getting a second opinion at Moffitt Cancer center. If they have a better plan, I will take it. It is a 70 mile drive. My breast cancer disappeared after 4 extreme chemo that sent me to the hospital for a week, then rehab for 3 weeks. I was very close to death. Would like to know other people's experiences with chemo.. I was able to tolerate herceptin, but I believe the others are like poison to me... more than most people. So who knows if I had stage IV when I wrote on here in 2015 but definitely do now.
I'd love to hear all your success stories and what treatments you are getting, bone and liver, HER2 positive (unless the cells have changed, which they can do).
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Kacy2 - Welcome. You are lucky to respond to Herceptin, it's an interesting drug. The second opinion is smart. Stick around. With your attitude and approach you will do well.
Bluebird - It's always good to get those MO notes... so you know what other people are reading about you. The specialists and second opinion doctors all get this information and believe it. It also gives you a way to evaluate your onc ... as you point out.
Shetland - The Mayo clinic pharmacogenomics program can be found online here. I don't know how extensive their report is. The only drug pathway routinely evaluated in the US is the pathway that metabolizes tamoxifen which includes. You can and should ask for this test if tamoxifen is on the table as a treatment.
The following table summarizes my results and you can PM me for the full report which breaks down what this means for a couple hundred common drugs. If you have $700 to spare, this test was one of the more useful things I have spent money on. There are a lot of pain killers that will be toxic for me ... good to know! It's the drugs that use the CYP2C19 and CYP3A5 pathways that will be tricky for me.
>Z<
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Grannax. I am only doing one dosage of Doxil so I can go to Paris for my dds birth. I am actually on Halaven. How was the Y90 treatment itself. What SEs did you experience?
Babs
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