How are people with liver mets doing?
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Maaki,
That makes a lot of sense to me. I have texted Nicole with the information. She is supposed to have an ERCP procedure today to get a better look at the bile ducts, so far as I understand.
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Nicole , thinking of you!
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Hello, liver mets sisters. I have been absent from this thread for a while. I am in my seventh year with liver mets, and sometimes I need to step back from the threads that are most emotional for me, and take a mental health break. Never think I don’t care.
Bev did PM me yesterday to see if I could tell her anything that might help Nicole. But I don’t have experience with stones or sludge. I am able to say that once I got stents to deal with the bile duct stricture, I felt so much better overall. Now ERCPs, I’ve had seven. I was under anesthesia so it was not a very difficult thing. Afterwards, bit of a sore throat and a fat lip, and of course feeling a little more tired for a few days. So, bottom line, don’t fear the ERCP, Nicole. May this be the beginning of solving your issues and getting you feeling better!
Grannax2, I know you will rock that wig. You are a model, after all.
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Leftfootforward, you asked about how to eat when you are not very interested in eating and are losing weight. There is a book a friend gave me that has both advice and recipes for various cancer scenarios, including unwanted weight loss. This would work best if you have someone to cook for you, but you could also use it to get ideas for what ready-made foods to buy. The book also has a “Bare Minimum Menu" which is 4 cups of Magic Mineral Broth, Chicken Magic Mineral Broth, or Pasture Beef Bone Broth (recipes are in the book); 2 servings of smoothies with protein powder; 2 cups Commonweal's Most Nourishing and Healing Tea; 2 cups of green tea or any variations on green tea in this book."
I have never had luck posting photos here and I don't want to violate any copyright rules, but if you PM me your email address I will send more info.
The Cancer-Fighting Kitchen — Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery by Rebecca Katz and Mat Edelson.
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Hi Everyone, I’m just popping in to give an update. I had my MRI and the spot on my liver is a cyst, so no progression. I’ll stay on Kadcyla. I just want to thank you for your support and for being so kind. Navigating all this is so hard.Sending hugs and love to all of you. ❤️
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txmom - good news!!!! Happy to hear it!
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Tx mom - best news- no progression!!
Shetland pony- good to see you check in!
Nicolerod- prayers for this all to be resolved and you get pain free!
Update-I have been dealing with very high BP during covid and after the monoclonal antibodies. PCP wants me to add back the HCTZ at a higher dose. I had stopped it a few weeks before covid because of potential issues with my low magnesium. He increased my metoprolol Er and I really don’t like the way it makes me feel. So I am fighting BP, sore liver from the last biopsy and scanxiety at the same time. Scan & plan on Monday. Lots of fear this time. As you know the clinical trial I am on is my 6th line of systemic treatment.
Covid Silver linings- watching our 4 yo granddaughter (with asymptomatic covid) for the last 2 weeks has been such a joy and blessing. Haven’t had her at our home for almost a year. Also, We have reservations at a fancy restaurant in Nashville for Valentine Sunday.
I really need a win. My trial doc said she is hopeful for at least 9-10 months of stable disease. Arg. That’s all she could hope for😢 but at this point I will take it!
Dee
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Dee, Sorry about your BP issue and the way you’re feeling. It stinks. But so happy about your granddaughter time! Best wishes for your scan & planning on Monday. (I’m there for pocke duty if you’d like some company.). Please let us know how it goes.
Txmom, Great news! Enjoy it!
Shetland, nice to see you here but I understand your needing a break. You have a lot of knowledge and I know I always learn from you.
Thinking of Nicole, hoping the docs get this figured out and relief is brought about ASAP.
BevJen, Thanks for keeping us informed in Nicole. Thinking of you, too and hope you’re doing ok.
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Dee, I'm hopeful you'll get more than 9-10 months out of the trial. Fingers crossed your bp issues are resolved and in your pocket for scan Monday. Very glad you're getting to spend time with your precious granddaughter. Four is such a great age.
Txmom, what great news for you!
Nicole, you're in my thoughts. Hoping your pain is being resolved.
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AlabamDee, praying for good results in your upcoming scan, and relief from the BP problem and pain.
TxMom, that is great news! Congrats!
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Good news. After lots of drama and even some continued drama, I finally received approval for my insurer to cover Enhertu for HER2-low going forward. Next step is to recoup the payments I have already paid to cover the drug out of pocket. My MO told me my letter was very well-written. Meant a lot since I spent countless hours working on the various letters.
Grannax, after some playing around, you will figure out how to wear your hair back in a wig. You likely will not be able to pull your wig up into a tight bun like you usually do (I like doing that as well) but you should be able to wear it pulled back in a lower pony tail. I finally bought a wig after being with very little hair for months. I love it. In the past, I bought a "sheitel", a Jewish wig which was great quality, virgin European hair but tended to have a very thick front. The new one I bought has a lace front where it looks like a natural hair line and makes such a difference. I love it. Wish I would have always bought this kind. The nicer wig places near my house are geared toward orthodox Jewish women and many only sell the sheitels so I had to travel a bit farther out to buy this one.
Praying for you, Nicole. Hope the procedure helps with your pain and gets you back on the right track.
Dee, enjoy your special Valentine's Day dinner! Sounds wonderful.
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Glad to hear you were able to finally get the costs of the drugs paid for JFL. Also sending prayers for good scans Dee.
So, I have a question for everyone. Do any of you have more indolent disease that has responded to chemo? I am trying to be hopeful but must admit that I am quite worried now that I have become endocrine resistant. Taxol was not effective for me when I was dealing with the pleural mets and now, I suspect that I am not responding to Xeloda. I was on it early on in my diagnosis and didn't feel I was responding at that time due to ongoing symptoms so we switched to Faslodex. My MO indicated that if the liver pain I am experiencing worsened we would switch after one cycle. Well, over halfway through and while I can't swear to it being worse, it's definitely not better.
I have been looking into local treatments but I'm not sure that's an option here. It's certainly not supported in terms of the MBC management guidelines for the Cancer Agency. I'm holding off discussing with my MO until I see where things go with the Xeloda as I know some have done well on it for quite awhile but also looking ahead to figure out how I'm going to squeeze as many days into me as I can! I was fortunate to have a long period between original diagnosis to stage IV I know but the downside is that it may be difficult to keep under control....
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Dee - In your pocket for Monday. I can imagine the anxiety. Try not to go over all the scenarios in your head - I know that is like asking the impossible!!!! The scan results will be here soon enough and if stable or better, all that worrying did nothing but stress you!!!! And if anything does pop up, you and your MO will deal with everything as it comes. I am so THRILLLED you have gotten this time with your granddaughter. Relish every silver lining you possibly can!!
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JFL - great news that they insurance is covering Enhertu for HER2-low!! I had not seen everything on this drama, so could you take a brief moment to explain why they would not cover and why they will cover now. I am super interested in HER2-low possibilities down the line. Thanks so much!!! You have been through many treatments.....
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Nicole Update:
I just talked to Nicole. She is still in the hospital. They determined that she didn't have a stone or sludge. She has been on IV painkillers again and it is providing her with some relief.
She wanted me to tell you all that she so appreciates all of your warm wishes and love. It is really helping with all that she's been going through.
Fingers crossed she goes home soon.
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BevJen Is she going to have ERCP tomorrow?
Dee Good for you to find silver lining in COVID and stage IV. Granddaughter time. Priceless
JFL. Thankful your persistence paid off. Thanks for the advice on my wig. I think mine is a lace top, too.
I got my second vaccine and had a miserable day the next day. Fever, muscle and joint pain, etc. But I'm better today. At least I know my immune system worked by my reaction.
My magnesium was low again from Eribulin. I've finished my second cycle and this seems to be the main problem from this drug.
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Grannax,
Loved the wig. Good choice.
I also got my second vaccine yesterday (Pfizer). Today I woke up and felt awful. Then I got a fever. Then I got nausea, Then I got achy. So yes, some people do get reactions. My husband had no reaction. As you said, at least I know that my immune system is working. I hope by tomorrow I'm back to normal.
The docs either started the ERCP or did a less invasive procedure, and then they stopped bc they didn't see anything in the way of stones or sludge. She's back on IV meds again while at the hospital.
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JCL,
So excited that you won your appeal regarding Enhertu. That's really great. I hope this drug continues to work well for you.
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Bev, thanks for all the updates on Nicole. I have a family member who had an infection in her gall bladder which resulted in its removal. She had suffered extreme pain prior to the docs finally figuring out what was wrong so I really feel for Nicole. Thinking of her!
Also, a question for you. Where in your Keytruda cycle did you have your covid vaccine? Did your MO have any thoughts about how to time it? Mine has said to get it when I’m eligible/offered (I’m not yet eligible in my state) but it makes me a bit nervous given that this drug is also designed to mess with my immune system (“mess with” is the medical term lol). Mind you, I’m less scared of a side effect than I am of covid so I’ll definitely get it. Just curious. Hope you’re still doing well post infusion.
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BevJen, thanks for the continued update on Nicole. Sad they didn't actually find a cause; I was so hopeful. Glad the IV meds are making her more comfortable. Waving hello, Nicole. With hugs & love.
JFL, I concur with other well wishers. Your persistence paid off! Congratulations.
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Margarita,
I got zippo guidance from my MO about when to time the injection. When I got the appointment, I wrote to the NP and asked if it was appropriate for me to get it -- I had my first keytruda on a Tuesday and the Covid shot on a Friday. Instead of her replying, I got a note from one of the nurses in the infusion center who simply said "You are eligible of get the Covid vaccine." I took that as a yes, and just got the vaccine when I could. I gotta tell you that for the first shot, I had no reaction. This week, I did have a reaction. In my warped mind, I thinking that that's because my immune system is starting to rev up. Hope it also goes after those nasty cancer cells.
Today was a bad day (infusion Tuesday, today is Saturday) but I think it was the Covid vacx, not the keytruda. So yeah, I'm doing okay, I think.
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I am hearing from people they had little reaction to the first shot, then a fairly strong reaction to the second shot. Regarding covid-19 vaccine for patients on immunotherapy:
Preliminary Recommendations of the NCCN COVID-19 Vaccination Advisory Committee*
Timing...when vaccine available e
e) Theoretical risk of exacerbated immune-related adverse events in patients receiving immune checkpoint inhibitors; there are no data on timing of vaccine administration, so this may be considered on the same day as immunotherapy for convenience and to reduce added visits to the office whenever possible.
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Dee, you really deserve a win. I’m so happy you got to have your granddaughter over!
Sadiesservant, it is hard to tell only two weeks into Xeloda. Sometimes pain means it is working. I had big liver pain my first few days on it. It seems to me that this would be a good time for genomic testing such as Foundation One, but I don’t know if it is available to you.
Brava, JFL! I am celebrating your victory. Who knew your talents would be applied to such a thing?
Bev thank you for the updates on Nicole and for conveying our good wishes to her. I hope she has a palliative doc to help her with the painkiller-constipation issue. It’s terrible she is afraid of painkillers, but understandable given what she went through.
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JFL - Congratulations on getting your insurance to cover Enhertu! I've been through the insurance appeal process and know just how much work it is. Major kudos for a job well done! I hope that Enhertu will continue to be very effective against your cancer for a long time. I've been on the DESTINY04 trial of Enhertu for HER2 low patients since 4/30/20. I'm so thankful to have had access to Enhertu and hope that it will soon be approved for all HER2 low patients. You are the first patient who I have heard of who was able to get insurance approval for Enhertu for HER2 low. I have heard of one ER+ patient who was able to get insurance approval for Trodelvy outside of the TROPICS02 trial.
BevJen - Thanks for the Nicole updates. My heart goes out to her. I know she appreciates prayers, so please let her know that many of us are praying for her. Thank goodness that the scans showed that her Y90 procedure killed her liver tumors, although I'm sure it's hard to celebrate when she's in so much pain... I hope that Keytruda will be very effective for you and that your reaction to the COVID vaccine is a sign that your immune system is mounting a powerful defense.
I'm glad that so many of you have received at least your first Covid vaccine! California finally said that cancer patients under the age of 65 (on active treatment) will be able to get vaccinated starting March 15th. That's progress!
Dee - Best wishes for your scans on Monday and a very long run on your current trial! I'm sorry that you had to suffer through Covid, but very happy that you can now enjoy some granddaughter time!
Grannax - I love your wig! I would love to see a photo of you in it when it arrives. You are so full of life and inspiring!
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BevJen and ShetlandPony, Thanks for the info on covid shots for folks on immunotherapy. Am looking forward to increased availability of the vaccinations. Bev, I hope that you feel better soon and that the side effects you’re experiencing soon pass.
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Thanks for your response Shetlandpony. I would agree that it seems to soon to judge. The only reason I am questioning it is that my MO specifically indicated that if pain was worse we would switch. As he put it, there was no point in burying our heads in the sand. Hmmm... my read is that he is expecting a quick improvement but then I’m not sure what his yardstick is. Nothing to do but wait until I hear from him but, of course, my mind is spinning still. The progression to my liver has been a bit tougher to bounce back from than I anticipated.
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Sadiesservant - do you mean your MO would switch you without a scan? I understand that clinical symptoms are important, but they are a part of the clinical picture. Since you just started xeloda, I would hope he would give enough time to make sure it’s working ....or not.....and scan to be sure.
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Sadiesservant, I agree with H&G. I was on Xeloda for over two months, then had a PET scan, before we decided it wasn't working.
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The issue is that we are back tracking to Xeloda. I was on it for 4 cycles after progression in 2017. While bones looked stable, I continued to experience symptoms related to spread to the capsule of the liver. Ultimately we decided to switch to Faslodex and the symptoms disappeared.
My disease has been tricky to track since day one. My scans came back as stable in October despite some clear clinical signs of progression with my skull base and c-spine mets. He moved up the planned CT to mid January and voila, two obvious lesions in my liver. I don’t think he wants to mess around to be honest.
Having said that, I’m not clear if he would switch if the pain is the same. He may only be concerned about worsening pain which would likely indicate the lesions are still growing (and Xeloda is not helping). I don’t want to risk letting things get out of hand either. Does this make sense
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Sadiesservant, if your oncologist is smart, experienced, and caring; if he has a grasp of how this particular cancer tends to behave; then yes this makes sense to me. Here is where the art of oncology comes into play. Guidelines are good, but so is personalization of treatment.
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