How are people with liver mets doing?
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Scout, you are same as me for first diagnosis! I made it to 2015 before mets were discovered, but they were everywhere, so easily would have been seen in 2013! The PI3K inhibitor was the right direction to try, although there just may be no good drugs yet in that space.
KPW3- I've seen several stories like the one below, which display a very healthy skepticism of that NKTR-214 Opodivo trial. The gist is that the companies are in a race for market share into the immunotherapy market,as Bristol's Opodivo has been losing out to Keytruda. The trial is designed to show that NKTR-214 boosts the response to Opodivo, but they are not doing the proper control (Opodivo alone) and instead just pointing to their great results in very small numbers of patients as an indication that the combination is better than Opo alone. However, as they add more and more patients, their response rates are dropping- they say its from the known fact that immunotherapy responses take time, the skeptics say it could just as easily, in fact more easily, be that your combo is not powerful, and we won;t ever know this way because you are not doing the right controls...
https://www.statnews.com/2018/06/03/asco-bristol-n...
I like the Halaven-Keytruda trial in that Halaven seems to be a very effective and tolerable drug, and so its good to see combination therapies being applied. I suppose I would be inclined to take this one, assuming one is sure to get the Keytruda, and then keep an eye on the various drugs in development, including CDK7 inhibitors
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Thanks Cure-ious, I appreciate your feedback! I was expecting to have those 2 choices, but as it turns out my choice is now the Halaven-Keytruda trial or a different trial with cisplatin and a wee-1 inhibitor (AZD-1775), clinical trial NCT03012477 at Dana Farber. The 2nd choice at DF sounds more invasive (liver biopsies necessary) and it's not as close a location....and I've heard good things about the Halaven-Keytruda trial. NKTR trial is closed, must have gotten their enrollment.
Need to talk to my MO here...
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Interesting that its so popular, well we won't know if the NKTR drug is helpful, but you will find out what the overall response rate is, and if its super-high, then it bodes really well for you taking it in a later round...
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Just a little update of my progress with Cisplatin (which I had due to very high bilirubin levels) Previously, I couldn't see much on the site about high bilirubin so it might be helpful for others . My blood test today shows my liver markers down to almost normal, with the bilirubin now 1.2 (2.5 last month, 16 prior to Cisplatin) Strangely, I have had for the last few days quite a bit of pain in my side. I've had pain like this before (when on Ibrance and also on Xeloda) and had scans that showed shrinkage. I was not confident this time - but the blood results give me a little confidence. I am now imagining the cancer being zapped and my liver re-generating. I've got my MO appointment tomorrow - so will see when my next scan will be (think it will be around end June/early July) and also discuss what my next treatment is. With Cisplatin, my MO says she usually only put patients on for 4 doses - its quite hard on your hearing - mine is a little affected. But with my Bilirubin down low there will be a number of options for me, where previously Cisplatin was the only one you can take with a high Bilirubin level.
Wishing all my fellow Liver met-zers big success with your treatments and scans.
Sarah
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great news Scwilly
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Scwilly - congrats. I have had have pain in the area of the liver, sometimes pretty intense on Abraxane. I continue to respond, so i should come to believe it is a sign I am responding but it always worries me instead.
Z
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I am happy to hear good news from you ladies today. Keep it going.
Well, here is my update after my PET scan and seeing my MO. Scan showed 5cm lesion in lower lobe and 3cm in the dome. High uptake on both. Also said I have pseudo cirrhosis. 1cm lymph node on right side of trachea, which is new. New bone mets in scapula, ribs and spine. Scapula and ribs are new. No pain, so that is good. TM have jumped, so this isn't shocking, just disappointing.
Will be starting Navelbine next week. Will try to get into Houston research Dr for a biopsy. Hopefully I will still be eligible for the immunotherapy trial.
Most of the rest of the blood work looks good, so that is AWESOME!
Now, on to take care of this liver and try to balance the cancer treatment along side the liver disease.
Trying to keep celebrating life....
Therese
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Celebrate Life, I hope Navelbine is just the ticket you need. Pseudo cirrhosis can be scary. Is there any way to treat it or are there recommendations on how to keep it in check?
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Celebrate life: I wish you well with your treatments. Grest news your liver markers are good. Thats me this month so I'm happy. My tumour markers take a little longer to process (I had bloods toom this afternoon) so haven't got those yet. Over the last 18-20 months of mets my tumour markers don't seem to follow the ups and down of my liver spots, but they did react when my bone mets showed up in April.
How are you looking out for your liver? IWhen my Bilirubin went crazy I went almost vegan, now I have more chicken/fish in my diet. The veg based diet was definitely more tolerable than meat when I was jaundiced and nauseous. I'd be interested in hearing if you do anything in particular.
bw
Sarah
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Hellou, thanks for the supplements info and info from asco. I had Il-2 therapy with optdivo in winter, it was manageable. My T cells were stimulated, if it helped, i dont know since my met was resected but I believe it helped. My liver transaminases however rose 7 times above normal after the treatment. I took milk thistle (high purity-druh Lagosa in Europe) and drunk tea from dandelion roots (organic of course). Liver transaminases droped within months to normal. I also did test my urine for heavy metals. Mercury, nickel, arsenium and gadolinium were above normal range. Gadolinium is from mri, so this is ok. But others I suspect fish. Now I dont know what to eat. Wish you the best for al
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Hi Maaaki,
So happy to read about your success with Milk thisle and dandelion root teas. I'm going to start drinking that tea myself now.
As far as heavy metals are concerned, one way to deal with it, is to eat wild fish that I very low on the food chain. I like sardines canned with olive oil because of the omega3 and cuttlefish because it can be prepared in so many ways. I also consume mussels and clams, wild salmon from the the North Atlantic and whole branzino from Turkey.
Once in a while lobsters and farmed Chilean sea bass, that although delicious, is unfortunately on the endergered species list.
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scwilly: maybe she would switch you to carboplatin instead of cis. I have had 13 cycles with carbo so far and doing fine over all. I have some ringing in my ears after 12 doses but hearingis good. Just a thought.
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That is certainly an idea, thanks for making the suggestion. Although I would do anything anything to keep going, the sensible idea might perhaps be to save Cisplatin for if my liver goes crazy again. This would would be good for my hearing too. (I’ve had some ringing and hearing issues but ,this waxes and wanes) I feel I now have a list of chemos and not just ONE (!) which feels so much safer. However, it’s scary to try to guess which will work best for me. I have my MO appointment this afternoon so will see what she says.
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Miaomix thanx, but I am crazy about organic food, when I buy fish I look for Fao areas and buy only from North Atlantic, Greenland, only wild catch salmon from Alaska, trouts from mountains from here and I dont eat anything from farms or Baltics. But we travel a lot and two weeks before the test we were in Israel and for 5 days I ate fish in various restaurants (tasted soo good) where I dont know the source probably Mediterranean so that can be it. I am thinkig that may be ginger or curcuma roots from China can be contaminated with mercury or arsen (I drink ginger tea a lot) even though I am shopping in organic stores I dont trust that all is organic and I ear a lot veggies from my garden and I am not sure what the neighbours around use in their gardens. So it is really hard to eat organic on this planet.
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And for dandelion tea, I pour cold water on cuted roots and leave overnight than boil next day for couple minutes, it taste horrible but with lemon it is better. Miaomix, I like your recepies, thanx for posting them :
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Iodine Can Help You Detox
Maaaki, do you know you can detox heavy metals by using a few drops of Lugol's solution in a little water. Iodine chelates mercury, lead, and cadmium.
Dr. Gabriel Cousens says that iodine can help us detox from many harmful environmental toxins which will aid in our recoveries from toxic mold illness. Dr. Cousens had written;
"Another major health protection role iodine plays is to increase the release of toxic halogens (fluorine, bromine, and chlorine) from the cellular systems. These toxic halogens negatively impact all our organs including thyroid function. With the first dose of iodine given, we have a 78% increase of bromine discharge.
Glad to hear you like my recipes....enjoy in good health
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Tennille, Where do you buy your Milk Thistle and what brand is it? How did you know what dose to take. Any information would be very helpful.
So glad Abraxane is doing well for you. it killed all the many many tumors I had in my liver within 3 months. I am taking milk thistle now but read I need a high dose, this is why Im asking you about it. I also did some research and Dandelion goes well with milk thistle.
Take care!
Robin
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Such good news Scwilly!
Mary
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I went for chemo and a CT scan today. CT scan ordered because my CA15-3 went from 566 to 722 in a month. CT scan found nothing in my liver but my spleen is enlarged. It's 15cm, normal is 11cm. My oncologist said that sometimes diffuse liver mets don't show up on scans. He also said that the spleen will enlarge when you have liver issues. AST 67, ALT 67, ALP 118. Has anyone had this issue? Diffuse mets sound scary. Has anyone ended up with diffuse liver mets that didn't show up on scans? I have an MRI scheduled for next Thursday-Jil
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Grrifff,
My liver tumors were ill defined on my ct scan. We did a PET scan and they showed up. So, good you are getting an MRI done. Stay on top of it.
Therese
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grrifff: my liver mets did not show on ct scan at all. Only shows on MRI. I had diffuse liver mets. Wishing you the best on your MRI.
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Congrats on a good report Scwilly! Always good to hear news like that!
Grrifff, My first Pet Scan did not show liver mets. I had to have an MRI and that confirmed liver mets. Sometimes the scans don't always show. I had a CT with contrast and liver mets showed up in both lobes. Also diffuse mets inside the liver. It was after I took Ibrance/Faslodex that this showed up.
I have a question, maybe someone can help me make up my mind. I go to a local MO that is very nice. My first local MO retired and he had been in practice for at least 40 years. He recommended me to Dana Farber, so I have any surgery done there, but I can't just jump in the car and drive 4 hours so he is hopefully getting all of my info. He took me off of Xeloda and put me on Afinitor after liver biopsies. 10mgs. My local MO followed his lead and I took it for three weeks. I was unable to get into my local MO for 6 weeks but she does blood work every week on this medication.
I started to feel winded and pale and just overall not feeling so great. My mouth had sores so I went to the Chemo nurse and she said just rinse with salt. The salt burned my mouth even worse. Finally my husband went to the pharmacy and wrote a prescription for something that is used for these sores.
The week before Memorial Day my MO did blood work, platelets were 42,000, hemoglobin was 8 and the level should be at least 16, but no word from my local MO.
On the weekend of Memorial day I feel down the stairs for no reason, spraining my ankle, not feeling so great and the tiredness and paleness was getting worse. Tuesday after Memorial Day I had more blood work, now my hemoglobin was 6. My local MO sent me a note on my portal, which I did not get due to WiFI service and she wrote me a note that I needed to get blood transfusions. Thank goodness a nurse called my husband and he came to work to get me and said that they were waiting at the hospital to give me 2 units of blood.
The same hospital that I go to called me with a reschedule for my GYN exam in August. I have been going to her for 20 years. I said well if she is on vacation that week I am pretty flexible, so a week one way or the other is fine. The receptionist said well the next appointment I can give you is in March of 2019. I said to her, "I have Stage 4 Breast Cancer and I don't want to wait that long to see her, that is crazy." She said well that is the best I can do for you.
So now I'm in a quandry, what would you do? I have sent my records to Albany Medical Center and have an immediate appoint with an Oncology MO that was highly recommended. Do you think it would be wise to change. I have never dumped a doc, by my husband is an Attending Doc at Albany Medical Center. I'm afraid to go to this local hospital, not that I doubt my new MO, but to me if my Hemoglobin was 8 it seems like they would have watched it closer than wait until it went down so low that now I've had to have blood transfusions. At this point, I wonder what else is going to happen at this local hospital. Its scary! Just venting but what would you do? I just need some reassurance, my nerves are shot and wonder if I'm not getting the care I should be getting.
Hugs to all,
Anita
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photogirl- I say go with your gut. Do what feels right to you. Don’t worry about anything else. You need to feel comfortable and at peace with the treatment you are receiving. If that means changing then do that. You need to be happy with how you are being treated.
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Anita - I have been through similar quandries. In smaller institutions a lot has to do with short term personnel changes ... the smaller hospitals are great when they work and completely fail when one key person moves on. Personally, I would go to the hospital where your husband is an attending doc. He will be able to figure out what is going on, trouble shoot mysterious silences, etc.
>Z<
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Anita, Where do I begin? I will start with the appointment with your GYN. If you had called to change the appointment, it would be one thing, but in this case, it was the physician who requested the change. Under those circumstances, it is completely unreasonable for them to expect you to wait until April for an appointment. The appointment should have been rescheduled for a timeframe within a week or two of the originally schedule date. They should have accommodated you even if it meant adding an appointment slot at the end of the day.Onto the MO - lots to discuss there. A local MO is a convenient option ONLY IF the treatment you receive is of high quality and you are able to get appointments in a timely manner. I see breakdowns in quality or follow-up in several places. You are on Affinitor? Their website suggests that patients be given a prescription for mouthwash before treatment begins because mouth sores are common and painful. Next, low blood counts are frequently seen with Affinitor, and doctors should order regular blood tests. Of course, just ordering them isn't enough. Ordering them implies the responsibility to review them and take actions when needed. Although a hemoglobin count of 8 is the threshold for considering transfusions, it is sometimes not done until the count is a little lower. In your case, however, if you continued on Affinitor, the expectation should have been that it was likely to drop further. Carefully monitoring and follow up should have been done. It also seems unreasonable to have to wait 6 weeks to get an appointment when you have just started taking a drug like Affinitor. Is your MO's patient load to big for her to handle? No matter how good a doctor is, if you can't see her when you need to, it isn't good enough. Is your MO aware that you have been winded and weak? Those could be from the anemia, of course, but since they can also be caused by Afinnitor, it might be a good idea to be seen by your MO. The choice to stay with your current MO or change is all yours. Do you think that the issues you have experienced are indicative of the way the MO handles her patients or just a series of bad luck? If you talk to your MO, will things improve? If not, can you continue with such treatment or do you thing it puts your health at risk? You don't know what the new MO will be like, right? Maybe you can start with a second opinion to see another perspective and personality and go from there. In the meantime, I am worried about you. Please let us know what you decide to do.
Hugs and prayers from, Lynne
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Z, thanks. I think I need a change. Sometimes you can’t fight this alone and when this small hospital has 50-80 patients a day with 3 MOs and 2 nurses it’s overwhelming to everyone. I just don’t want to fall through the cracks. Thanks again. I hope you are feeling better too.
Hugs Anita
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50sgirl. Good insight. I need you on Speed Dial!
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Anita, it is hard to believe you need a blood transfusion and all the MO does is send you a note through the automated portal. I would think she could pick up the phone for that, at minimum. I can't imagine all her patients are competing for her time with just as urgent of a problem at that same moment. The GYN reschedule is almost funny (in a twisted, wrong way). How could someone call you and say that with a straight face?! Seriously. Sounds like you are on your way to a resolution though. You have good judgment.
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Z- We need a report/update from you!!! Are you getting ready to start fasting for Monday? How are you feeling?!! No comment for a long time...
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Cure-ious - Thanks for asking.
I am alternately hopeful and freaked out about my response to three and a half cycles of Abraxane. Liver shrunk in size (as measured by oncs palpitating abdomen) continually for a 6 weeks. This is really promising. However about two weeks ago it hit "moderately" enlarged (as opposed to the original "OMG it reaches your pelvic bone" enlarged) and isn't shrinking further.
I have continued pain in liver area and abdomen. I feel a dull pain in the liver area as a right. Like many people I have felt pain the whole time the liver was shrinking/improving. However, even knowing that, the pain worries me.
Liver markers were dropping week to week but have also plateaued in the last couple weeks. My most consistently reliable TM, CEA, dropped a bit (500 to 400) but never dropped as hard as one would expect from a strong response. Next TM blood draw is this coming week.
PET on 5/2 after 1 month of Abraxane was NEAD. NEAD should be good news but oncs seem mostly puzzled. Liver looks completely normal in PET, MRI of spine done at same time (5/2) showed innumerable mets as incidental finding. The mets are not gone, they are just not hyper metabolic relative to the background level of metabolic activity in the liver. The liver has a high background SUV (3+).
A couple weeks ago I started feeling firm enlarged lymph nodes in my neck, groin, armpit etc. They persist for days. Some go away and come back. They don't seem to grow past a certain point. No sign of viral or bacterial infection. Immune response to cancer, or cancer advancing?
I continue to feel bloated. I have to lie over a bolster, twist and stretch to digest properly. Huge improvement with yoga but still partly bloated afterward. Is that an enlarged liver interfering with my gut, or did the ascites come back?
My major Abraxane side effects are muscle weakness, cramping when I sleep and numbness in the fourth toes and balls of both feet. These symptoms of peripheral neuropathy is common with Abraxane. The muscle weakness manifests primarily when I climb stairs or try to jog. I can't jog more than a 50 yards. My legs just don't have the strength. I can walk for miles, though. The numbness and cramping are manageable with a few tricks. I generally have more energy and feel better than I did pre-cancer and certainly better than I ever felt on hormonal suppression. Mentally it helps a lot to be functional.
Cyber somthin to brain at the end of the month. MRI at that time will tell us if lesion has grown since April and therefore likely malignant.
I am worried about the brain scan and the ambiguous systemic response to Abraxane. Since I feel like superwoman, I furiously cleaned my house this week, getting ready for The End, stopping periodically to break into tears. I would have talked myself out of the drama, but the house really needed cleaning.
I am in Pagosa Springs, CO today enjoying the thermal baths with my daughters and one of their friends. Tomorrow I drop DD2 (12) off at camp in Durango for a month. She is very excited about camp, ready to have a great time, not the least bit worried about leaving me. My kids know all the details. DD2 is strong and grounded. This gives me a sense of calm.
Katharine
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