How are people with liver mets doing?
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Z, thinking about you - hope the liquid diet resolves the pancreatitis and you go back to feeling like yourself quickly.
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JFL - glad you are still working and keeping your hair. I have not taken either med, but they are on my long list for later. For me I might try doxil first, as it's only once a month, give your veins a rest, keep most of your hair and save Havalan for later. What are you new TM's? Please PM me when you can. I transferred all my office work to my home this month, and so far so good. I have lost over 10#, need to be able to eat with these bruises and mouth sore. sigh Ice cream is my friend.
Z- please get all the liver tests you need now so your decisions are based on fact not onc wishful thinking. I echo the chorus of don't be afraid of IV chemo, it may knock out your liver mets and that sounds like all you need now. Xeloda is a possibility too, but something tells me you will find the right med and it may be a newer med. (())
C
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Good to hear from you, lalady. Glad you are able to work from home. Hope you can get some calories and nutrition down.
Sitting in the big chair for Gemzar #3. Neutrofils barely hanging in there...but keeping me going.
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Robin, your drop in tumor markers is impressive! That certainly is a good sign Abraxane is working for you.
Z, glad you have some answers. Is there any possibility immunotherapy / an overzealous immune system could be causing your body to attack the pancreas? Just throwing it out there and hoping all this is a good sign the NKC and other therapies are working.
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Z. Glad you went to your doc, I can tell you had to make yourself do it. I had a botched surgery that caused pancreatitis type symptoms. I've never had so much pain, I actually screamed out loud when it felt like my stomach was twisting w any food. They put one of those nose things in. OMG. Never want to do that again.I was on only IV fluids. The nose thing was to get the food out not a feeding tube.
Life. I cannot understand why all this other stuff has to happen while we are focused on saving our lives. 😬
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z. I’m so glad you went to your pc dr. I think our minds automatically go to a very dark place-even when it shouldn’t. Now you know and can deal accordingly
Babs
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Still here!
Read through last 4 pages.
Went to oncologist Tuesday, Dr. D. He is the gem. Went well, he agreed to my ultrasound request for liver and the carotid artery / vocal chord nerve area. He agreed to the Faslodex being revisited and injection site different. And arimidex. And metformin. He said Verenzio would be too rough on my right now. Maybe later. And he signed me up for frequent hydration while I am going through this low spell. And I am ok for only ultrasounds now, no scans unless I want them. Liver and corotid artery / vocal chord nerve USs tomorrow.
Being off the aromasin has helped. In the past the faslodex / arimidex was easy for me.
Have high hopes.
I told him that I was walking into the appointment with an open mind, whatever he said would sway me to go hospice or stay on palliative care. He said I look real good, better than they expected me to look from the last doc's notes. I am still palliative.
My new protocol will build slowly, taking note of drug sensitivities. For today, faslodex was 250 and not 500. Soon add arimidex, metformin. Also he knows I am taking 1500 curcumin proprietary oil / day and some antioxidants, high dose.
Z - you asked back 4 pages or so about liver swelling. I know when the lesions were growing in my liver it felt like a water balloon was under my skin on my side. Could be rubbed out, ugh. I thought it was water retained, but proved to be lesions. On my xray the notes said my right diaphragm was elevated. Of course, no one took note of that little problem. Then the liver lesions showed up on the PET CT.
Kaption - we're in your pocket.
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Wow this thread moves fast. Regarding liquid biopsies, mine was also Guardant. My onc chose it and she knows her stuff.
Good for you going to the doc and getting a diagnosis, Z. I'm sure you will seek out the healthiest broth. Or make some. And golly, Lalady. I hope you can get some really good ice cream with lots of extra eggs and stuff. And there's Kaption in the big chair. This thread is full of women who show such grace dealing with all the things bc and life throw at them. Bluebird, I'm so glad you and your new doc are on the same page. You sound like you feel more peace now.
Yes, Ann, I would ask about CISH now to determine Her2. It is important to get this right.
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I do feel more at peace, everyone still in the trying stage is good. I said "I have books to write!" and both oncologist and nurse navigator laughed out loud at the spontenaity of my outburst. I hope they do know I am not kidding.
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Patty? Lita? Others, you know who you are. How is it going? Updates, please.
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Here's an interesting new compound, CXCR4 inhibitor, starting a trial in combo with Halaven for MBCs that are HER2-negative; they say if it works as hoped it could be available to all in 2021 or even 2020 expedited FDA approval.
https://immuno-oncologynews.com/2018/03/15/polypho...
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Hi All
Right now I’m busy with my sweet grandson and Dd. I’m exhausted but so happy.
Here’s my love. It’s the time with them that keeps me going!
Hugs to all
Babs
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Donnabelle - that is hugely helpful. I've been reading more and I have doubts that I have pancreatitis. For one thing my amylase (the pancreatic enzyme that digests carbs) is low normal and that would be odd if I had pancreatitis. It should screw up al the enzymes not just one.
I've tried to stick with the clear liquid diet nonetheless because it's basically "bowel rest". Clears your bowels out entirely of solids. Calms the whole digestive system. People do clear liquid diets for brief periods to resolve the symptoms of a variety of dysfunctions of the gut. I have abdominal pain for weeks and diarrhea for months with no clear diagnosis. Some combination of treatments and illnesses have thrown off my digestive system. Fasting seems like a reasonable thing to try even if I don't have pancreatitis. Will check in with doctor on Saturday, but I won't be surprised if I feel better but my lipase is about the same.
Rpoole - The tumor marker drop is amazing!!!!! Glad you are getting a blood transfusion ... you always manage to sort things out no matter how rough things get. I am in awe, once again.
Thanks for your kind words. Some of the worry is gone even though we really don't know what is causing these chronic abdominal issues. It's nice to have a reasonable plan for how to get my belly to settle down.
Piggy - thanks.
Lalady - At least you have ice cream. All I have to look forward to is bone broth.
I am looking for something new, indeed. I am pretty sure my FGFR amplifications are my achilles heal but I haven't fallen in love with the FGFR inhibitors in the pipeline. I've been working through the available clinical trials. There are over 12 clinical trials of over 6 drugs I could join based on eligibility criteria. Thinking things over, comparing the whole FGFR thing with other options.
I am afraid of Xeloda because I did Xeloda briefly at a low dose and got the skin rash from hell.
Hear you on the wishful thinking.
Kaption - way to go!
JFL - That's my number one theory ... my hyperactive immune system is attacking my gut. Much like Crohn's disease. Fasting is one of the best strategies for reducing inflammation so we'll give it a whirl. Day one is behind me. It feels like I am on the right track at least in terms of calming this gastric issue.
Grannax - You are one experienced lady. We learn from you every day. OMG. WOW.
Babs - Thanks. I woke up a wretched weeping mess today thinking of Dani, her young motherless kids and my young girls. My younger daughter could play in the orchestra in a town 40 minutes away next year. She's reasonably good violinist. It's a better orchestra. It would require her driving every weekend during school. I can't count on being able to take her. Anyways, I was a wreck this morning. Most of the day. Dark places indeed.
I really get Dani. There is no tidy way to plan your departure when you have kids. It's just not possible. It can't happen. All I can do is try harder and harder to be a good mom. Of course I suck at the moment with the pain and fasting and doctor appointments and treatment decisions and the travel and the jet lag.
You get this, hanging with your grandson. He's just gorgeous.
Bluebird - Nice work with the oncologist. Thanks for your experience with the liver lesions. I have so much going on in my abdomen, 3 ring circus does not begin to describe .... Trying to figure out what is what.
Very tired. Hope I can sleep, that has not been going well. Kinda sad. Sick of feeling sick. A little hopeful as my abdominal issues recede on this diet.
Thanks everyone, I don't know what I would do if I couldn't talk to people in my shoes.
>Z<
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scan day today. Mri ifbrian first, then CT of body. Maybe even throw in the echo if it got s Hercules. Won’t know results till Tuesday. Is it possible to hold your breath all weekend?
This will be the second scan since I was taken off Xeloda and placed on Kadcyla. Hoping for the best.
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Z - My amalase has always been normal as well, so I think that is an important part of the whole picture. Please let us know how the fasting goes. I am willing to try anything to help with the amaceclib induced diarrhea and belly pain. Had a horrible day with it yesterday. I'm seeing anutritionist this afternoon so I hope I get some good, concrete ideas on how to deal with this. As you said, I am sick of feeling sick!
Babs what a precious baby! I am so jealous! Waiting for my 27 and 30 year olds to get serious and give me some grandbabies lol!
Good luck with the scans Left foot!
And happy St. Pat's to all. Green beer sounds good right about now ☘️
Donna
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There are many people on the abemaciclib thread who will be very interested if you can get any improvement on the diarrhea issues. I hope you report back from your visit with the nutritionist and how it works out.
A clear liquid diet for 2-3 days is worth is worth a try. I push it a bit and have cold pressed vegetable juices from the food coop. I choose the anti-inflammatory rock stars like beet juice. There is some fiber in there, but the strategy seems to work.
I've been reading the work of this expert in inflammation. His research program is testing foods for their inflammatory and anti-inflammatory properties. Although his work is primarily with food, he says there is no food that approaches fasting for eliminating chronic inflammation. I am on hour 40 (I'll be counting the minutes by Saturday) and my symptoms are greatly reduced.
>Z<
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Z. Thank you, I’m usually the one learning from you! Of course I wish I did not have so many experiences! But, if any of it can receive help from something I’ve had happen, I’m glad.
Yesterday morning I did something I’ve never done before. I wrote my MO a long email. Yikes. I’m so fearful it will come back to bite me.
I have just had enough of this waiting to understand F1 report and her opinion of how to use it for second line treatment. As you know, I asked her about the ESR1 alteration and she jumped right into the AA TX might be next conversation. That panicked me. So, I wrote first that I was grateful to her for referring me to have y90, etc,etc, etc. Then I carefully got to the point. I need to understand how the she plans to use F1 report for my Next TX. At one point in my email I said, I’ve had 25 years of personal experience with four DX, more than most doctors.
I really meant I have truly never heard of an MO who has been DX four times. Our experience has to count for something. Of course, I carefully explained that the way I have coped is by knowing, learning and reading to find out everything I can about my cancer and treatment. It calms me down when it finally makes sense to me and I come unglued if I cannot make it make sense.
So, that was yesterday morning. No response yet. Hmmm what does that mean? If she expects me to wait till April 18 appt, that’s not gonna happen.
I also talked to F1 and they did explain some things to me. Like, I have a genomic alteration not amplification in ESR1 DG (I can’t remember the rest of the gene). I was very confused about that. Of course the rest of it is pretty easy. Very clear that my tumor is resistant to AI TX. Only Faslodex is listed as FDA approved. With lots of clinical trials all over the world.
I think I understand the report better now. But, still really want to talk to my MO. I hope she calls or writes back.
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Grannax - It often strikes me how experienced you are. You know a lot. Your doctor is your partner.
If trials are of interest, you might consider one of the (free) trial matching services like Cancer Commons or Emerging Medicine. The only trials that doctors want to deal with are the ones in the their facility run by their colleagues and this is often not the best option for you. Even just showing up at an appointment with personalized guidance from one of these services signals that your pushing a little harder for a solution than the last patient they saw.
>Z<
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Hi all,
M.D. Amy Myers is a doctor that specializes in autoimmune disorders that affect the gut. I have successfully followed her protocol to deal with the destruction of my biodome by cancer drugs a few times over the last three years. Anything that supppress our immune system is destroying the balance of our gut bacteria necessary for digesting and assimilating what we eat. There's a video on youtube you might find useful where she explains in details what happens, she also has a comphrensive web site.
As cancer patients sooner or later we will all have to deal with IBS and leaky gut and much worse depending on the grade of the damage. Bone broth is the best remedy to heal a leaky gut.
Stomatitis is the visible part of mucotisis, the sores and the inflammation don't end just in the mouth, they affect our whole digestive system in various degrees all the way to our anus. Some of us are more vulnerable in this area, than others,
BUT the fact remains that we are 80% made of bacteria, the largest part of our immune system resides in our gut, when we take drugs that suppress our immune system we are messing up our biodome and it’s ability to digest and assimilate Foods and protect from infections.
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Hers's a great recipe for bone broth. It's best if bones come from grass fed beef, as the others are full of growth hormones and antibiotics.
https://draxe.com/recipe/beef-bone-broth/
Grasslandbeef.com will ship the bones frozen overnight...
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Thanks Miaomix! My evening will be spent looking at this.
>Z<
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Hello to all of you ladies, I hope you are all doing well. I read some of you are inquiring about Artist. Artist , ew days back was admitted to the hospital for a clot in the lung , went back home . Again at home she did not feel well nor was she able to eat. She was back at the hospital the next day for hydration and food. This was the last message i received from her. I believe if she was back , she would have posted here and send me a message. I hope she is well and we all will hear from her soon.
Someone asked abour affinitor (everlominus). There was a thread here posted by Romansma, may she rests in peace. If you check her name you may find the topic , as she was on affinitor for 9 months. However, I agree with Z , i do not think affinitor is a successful treatment for Al resistant patients or breast cancer as a whole. Of course this is just an opinion.
Ann/kaption as JFL mentionned i dida CISH test through Carris since FISH failed twice to prove my her2 positivity. taxol, herceptin,perjeta wwere my life savers , i got 2 years of total remission. Now i am on tdm1 (kadcyla) but my onc told if i get progression again , she will go again for taxol, herceptin, perjeta. So to all of you ladies who are turning her2+ i wish you all the luck and an excellent response.
Warm regards to all
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Z - I was diagnosed wirh ulcerative colitis when I was only 20. I have been living with this sidekick for over 26 years now. 2x I've been told to talk to a surgeon to take out my colon...its still attached and cancer free 26 yrs and 6.5 yrs since 2 lousy gastros thought they knew my body better than I did. Bowel rest works (did 4 days no food, just IV fluids) and so does walking, walking walking (slowly and if your weak, with someone). Think how they walk horses when they colic. Our guts are similar, they never truly rest and they need to help moving acid and gas along so it doesn't get too painful.
Bowel rest best bets: avoid caffeine (it creeps back into my diet thanks to my favorite tea and chocolate), ibuprofen, splenda. Antibiotics mess with me so I avoid at all costs (tricky with a compromised immune system), stress (out the window with 2 cancer diagnosis, a kid and 2 job changes) but exercise, ambien, attivan and vacations, music helps!
Lialda is my miracle drug (mesalamine). Not to encourage it but nothing slows down diarrhea like an oxy (I get a couple each zometa infusion and I hoard them). Pepcid cuts back on acid. I lived on white rice, chicken, applesauce and mashed potatoes for 3 months once. Just be sure to get your folic acid and iron! Hope you are feeling better soon.
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Woodylb, thank you for the update on artist. Very scary.
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Woodylb - thanks for the letting us know about Artist. It’s so hard when we don’t see posts from someone who has been suffering. We can only hope that they have developed a relationship with someone on the boards who can find out what’s going on. Hoping she is getting what she needs in the hospital and rebounds quickly. Sending her love and support.
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you're welcome Zarovka! I hope you find the information uselful in your case. It takes usually a month before the gut starts healing, the problem is that we need to continue taking the necessary cancer medications which impede the healing. therefore it's important in order to digest foods to supplement with various enzymes. Right now I need all of them, from hydrochlic acid, to bile salts, to pancreatic enzymes and of course probiotics. Afinitor this week peeled off my upper palate, so I stopped taking it for two days and increased the magic mouthwash swishing. If it did that to my mouth, i believeit's doing that to my intestines....
It's unfortunate that as we are stuck between the rock and the hard place...
Md Myers mentions Lglutamine as the number one aminoacid that repairs the gut quickly, however lglutamine according to MSKCC also feeds cancer, so it’s better to use the beef bone broth instead.
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Woody - I am very concerned about Artist. Please add me to the chorus of people who would like to see her out of the hospital ASAP.
7of9 - Great moniker. Thank you for your experience with ulcerative colitis. I have never had to deal with this kind of crazy abdominal issue. You reminded me that I have had severe diarrhea that won't go away for four weeks now. I am reading that fasting actually causes diarrhea so I am not helping that piece with fast. I don't think I'll stay on this long, but it feels good to have my drama queen of an abdomen calm down a bit. Maybe another day and I'll start adding back simple, anti-inflammatory solid foods.
>Z<
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Woodlb- Thanks for the info on Artist, I am also very very worried for her!! And now I'm kinda getting freaked out about everybody! How are you doing? And how about you, Kaption?!!! It's time for some more good news on new treatments.. And I agree with all of you, not interested in trying Afinitor in any of its combinations
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Hi everyone, I wanted to share a quick update on my experience with a clinical trial I'm participating in @ MSK. A little background: originally dx with bilateral breast ca in 2003. DCIS in right breast and adenocarcinoma (100% Er/PR+ her2-) in left breast with one micro met. TAC x3, developed an ileus and pulled the plug on chemo. Tried tamoxifen but had cognitive issues so d/c'd that also. Fast forward 10 years, developed swelling in my left arm, CT scan revealed a mass, mass was totally resected and positive for my breast ca still 100% ER/PR+ her2-. Dx with bone mets, letrozole x3 yrs, had wacko CBC results, bone marrow bx revealed infiltration, started Faslodex/Ibrance. One yr later, this past November, progression to my liver. Genetic testing revealed P13K mutation. MSK is participating in a trial of a med that blocks an enzyme involved in cancer cell growth. I started the trial drug on 1/30 and have had improved blood work results not limited to my tumors marker results before and after starting the trial med. CEA went from 6.2 to 5.6 and CA 15-3 went from 114 to 49. Bilirubin, both total and direct are WNL. ALK is 57 AST is 18 and ALT is 13, all good results. I'll have my first CT scan since starting the trial med this coming a Tuesday and am employing the logic of if my bloodwork results are good then my scan results should be good also. Then I'll be able to breathe.
Thanks for reading. I'd be happy to answer any questions as best I can.0 -
That all looks good, Scout!! Which trial are you in? what's the drug being tested, and are you feeling any side effects?
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