How are people with liver mets doing?
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Hi Cure-ious -'thanks for taking the time to read my post. The trial goes by the name of the trial med: GDC-0077. Actually this trial is being held around the world. I know Mass General is also a participating facility. I'm in phase 2 of the trial. I believe I read there are a total of 157 participants in phase 2 and MSK has 25 slots. I asked this week, and the majority of women in phase 1 are still taking the med and phase 3 has not been outlined yet. The trial is currently scheduled to run until 2020. Yes, I did experience a side effect, hyperglycemia! This s is a common SE of the gdc-0077. And it was awful. I had an allergic to metformin, one of the anti-glucose meds, and it took a few days to recover from that, and then it took time to come up with the correct combo of meds (4 oral with insulin only to be used as a "rescue" med if my glucose shoots up). And a big change in diet! Now I feel I've settled in nicely in the past three weeks. I'm working hard on my end to recalibrate my eating and drinking as it's what I have control of. My body is very sensitive to meds (one of the reasons I wanted in on this trial). My strength and stamina are steadily improving so I'm feeling pretty good about things. I'm praying for good scan results and will feel much better once I have that under my belt. My visits to MSK have been weekly and will decrease to every other week starting in April and then monthly beginning in August. I live in Ct and it's a three hour drive each way so I'm looking forward to April
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Woody thank you for letting us know about Artist. I hate hearing that she’s not doing well. Please tell her we’re routing for her!
Babs
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good luck with your upcoming scans scout-a-bout! The bloodwork and TM numbers surely look good! I always feel a lot better when mine improve.
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Curious- I guess my good news is I did get 3 Gemzar treatments in. But, the CBC and cmp numbers from Thursday were concerning. I had just enough neutrophils to get the treatment. But, when I saw the rest of the CBC I was shocked to see the large drop in platelets. Since the first of March I’ve dropped from a nice strong 329 to 152 this week. I do get next week off. The other concerning numbers were the AST and ALT which are above normal for the first time. Next Thursday I go for just labs and my Xgeva shot. I see MO the following week. So, we’ll see.
Hope everyone has a nice weekend.
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Grannax -
I just watched Fabrice Andre speak on "Overcoming resistance through genomicaly informed investigational cancer therapy." The first five minutes of the talk will be interesting to you. You'll have to google it because I can't post the link.
Andre makes the point (in March 2017) that there are only 5 genetic mutations that have been proven to define a group of patients that will respond to targeted therapies. He includes ESR1 which at that time looked like it would respond to GDC - 0810 but I believe the trials of that drug were stopped in April 2017 because they were not getting a response.
Andre argues that at this time it makes no sense to look for genetic mutations beyond the 5 (actually 4) mutations known to respond to available drugs. He is talking to a group about early stage breast cancer. The additional testing can give MBC patients access to trials and other information about treatment options in our high risk environment. Nonetheless, the facts he lays out may help you understand why a test like F1 can end up having limited practical value for an individual patient, and possibly the way your doctor views it and why he/she is not using it to inform your treatment.
>Z<
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Thanks Scout-About. Here's the trial. It's still recruiting. It requires the PIK3CA mutation. You can combine the drug with palbociclib and hormone suppression, or not. Sites in Mass, Tenn and NY. Wishing you great results for a long time. Keep us posted.
>Z<
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Thanks Z. I'm in Phase 2, arm 3 - I take letrozole with the trial med. Please add me to your prayer lists that I have good scan results so I can breathe a little easier and move on a little more with my life. I believe we all would like the same thing. I'm happy to have found this link and that I'm can lean on all of you for support and guidance. I hope I can provide a measure of comfort to everyone. I'lldefinitely post updates here so folks can see how things pan out. Thanks!
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Sounds interesting. Thanks Z
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Z. I did watch the Andre Vimeo. He was hard to understand for me. Do you speak French? I'm glad you told me there had been a trial that he was referring to, I did not even that part. I saw the number you wrote, did the drug have a name? The print was so tiny I could not even read everything he was talking about. I think I heard him refer to something called Applg or something like that. Was that a trial too? I did hear him say ESR1 had a poorer outcome. My report does seem to indicate faslodex is an approved treatment. Maybe my doc has a different opinion. When she calls I want to be respectful, as long as she will at least try to help me understand her reasoning.
Thanks for the info.💞
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Woody, Thank you for letting us know about Artist. I have been worried about her, and I am still worried. I am sending prayers for her.
Babs, Your precious grandson is beautiful. Enjoy every moment with him and your DD. Make sure you get some rest, too.
Hugs and prayers from, Lynne
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Kaption, animalcarcker and Z you are welcome. I am very worried about Artist too and i truly hope she pulls through. I am afraid if she does not pm me or post here. This is the only way we communicated. Hopefully she will post herself. Love to all.
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Oh, Kaption, I hope that all those numbers correct themselves and that the Gemzar has packed a strong punch. Let us know if we need to research any other treatments that they may be considering?!, we all want to know about the various options! Can you say more how your day to day health?
woody-Also worried now about ARTIST, so please keep posting updates as your hear or let her know we are pulling hard for her!!!
Scout, you are wise to take the time to let your body adjust to the mutant PI3K inhibitor, this is one of the most common mutations in cancer and there is concern that it is making the cancers escape hormone therapy, so we need to be able to hit it and restore sensitivity to Faslodex or Femara. The lessons from Ibrance were try to stick with it, can take more than a couple of months for the body to adjust to the side effects and to show benefit from the drug. There seems to be a lot of push on this trial from pharma as evidenced by all of the sites where it is offered
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I am also very worried about Artist and am very ANGRY that the stupid vogons (bureaucrats) let her go a MONTH without treatment while they di**ed around with her COBRA insurance application. The insurance people and the hospital people were willing to risk her dying! We are talking about grade 3 cancer and peritoneal mets here, and I just can’t fathom the lack of mercy. I cry that she was so powerless and so in need of care. I want to punch somebody. If she doesn’t pull through...
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Thanks Woody - we hope Artist does get back online and post herself or PM you. We realize you aren't the conduit to her beyond that last post. We are all just worried.
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Grannax - the talk I saw was not in French ... there is one in english. Only the first few minutes are relevant. As far as outcomes, remember that he is talking in a session about early stage breast cancer. The question is whether the cancer is more aggressive (poor outcome, more likely to be MBC) and therefore justifies a more aggressive treatment. All 5 actionable mutations are associated with a more aggressive treatment and therefore justify research and investment in advanced drugs for early stage BC.
We're already the poor outcome in that case. Alas. But nothing to worry about, in a way.
If you google that code name, the drug name comes up. The wikipedia article about it short and sweet and to the point.
Faslodex makes sense with an ESR1 mutation, although it doesn't target that mutation directly. Goodness, this is complicated. Your questions and thinking are dead on, BTW. Keep going.
>Z<
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Prayers for Artist for a quick recovery.
Shetland, I second the anger on the slow insurance response. Her insurance has done this to her more than once!! It's a disgrace!!!
Robin
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I am worried about Artist and am very upset about her insurance/COBRA situation preventing her from being treated for a month. I got fired up reading your post, Shetland. I agree with Robin and you. I pray for a strong rebound from this latest fire storm. Artist, thinking of you. Woody, thanks for letting us know. I had no idea about the pulmonary embolism.
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Z yes I watched the right one, it was his English that was hard to understand for me, because he was just learning it, evidently. Ok I'll look up the code for the trial. So, I need a targeted drug to go with faslodex. I know Ibrance and faslodex together is FDA approved but if I fail IF she probably would not put me on that one.
Poor Artist😢 I love her posts, although I don't feel like I know her as well as all of you do. I have had so many battles with insurance companies in the past, I hate their control over our lives. So glad that's in my past, no trouble since Medicare.
Praying for Artist.💞
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Grannax - FWIW, I decided to go with just faslodex. As far as the standard of care goes, here is the current sequence/options for ERPR+ breast cancer if you don't get into trials, per the amazing and talented Bestbird.
This is copied from Bestbird's Insiders Guide to MBC, which everyone needs to read and re-read and read again when you are facing transition. It's very long at this point because Bestbird is a meticulous researcher but if you focus on the parts relevant to you it is manageable. Follow the link for information on how to request it.
FOR POSTMENOPAUSAL HORMONE RECEPTOR POSITIVE, HER2 NEGATIVE MBC PATIENTS IN THE US (Updated Nov. 2017):
First line Hormonal Treatment Options (depending upon what, if any, recent treatments the patient may have had in the adjuvant setting):
* Letrozole alone
* Arimidex alone
* Aromasin alone
* Faslodex alone
* Letrozole and Ibrance
* Letrozole and Kisqali
* Arimidex and Ibrance
* Arimidex and Kisqali
* Aromasin and Ibrance
* Aromasin and Kisqali
Second line Hormonal Treatment Options (depending upon prior treatment):
* Letrozole alone
* Arimidex alone
* Aromasin alone
* Faslodex alone
* Letrozole and Ibrance
* Faslodex and Verzenio
* Verzenio alone (if the patient already underwent endocrine therapy AND chemotherapy that failed)
* Faslodex and Ibrance
* Aromasin and Afinitor
Third line Hormonal Treatment Options (depending upon prior treatments):
* Possibly any of the above therapies (although not all combinations are widely used in a third-line setting)
* Tamoxifen or Fareston
Fourth line Hormonal Treatment Options (depending upon prior treatments):
* Possibly any of the above therapies (although not all combinations are widely used in a fourth-line setting)
* Either Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)0 -
Thanks Z. I am guilty of having Bestbird's book and have not read it yet.😮 I definitely need to read it, a least several times. 💞
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Cure-ious, my day to day condition is FATIGUE. I have been checked for adrenal issues ( I do have some benign thyroid issues) but essentially what I feel is 4 years of dealing with cancer and many, many treatments. Nothing has worked more than a year.
Fortunately I have very little pain. L1 is collapsd and I have pain from that, including some sciatica. Liver has only mild pain. So, I’m lucky in that way. Just very tired all the time.
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I hear ya on the fatigue, Kaption.
>Z<
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Kaption, I don't like nothing working. Was there recent biopsy or genetic testing done? Sorry I don't go back thru the threads, assuming you've discussed it before.
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Shetland i am as angry as you with Artist’s insurance , they made wait too long to start treatment. I looked again at her last pm. Her liver enzymes are elevated, potassium and kidney. She has no appetite and threw up all night , this is why they was brought back to the hospital. She was very tired and she said she wassigning off. My heart is sinking. I fervently hope she bounces back.
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Woody -very mad a the insurance company's treatment of Artist. So wrong! Waiting to get approvals on meds that are vital to her well being. Please keep us posted.
Z- keep being a warrior. I had my first small hamburger patty yesterday in 3 weeks. Think I am turning a corner on eating with mouth sores. I have been susisting on rice cereal, protein shake, ice cream and fried eggs for dinner - and fluids 3 x a week. lol Lost 12 pounds since my fall on 2/24. So I will try and gain some back. Since rads make me sleepy, it's been easier to rest. Now getting ready to walk a little more. Trying fluids twice next week to see how I do. BP still low, so I am using a walker as needed. Not much hair left, but enough for a hair halo! Take that cancer~ I have no pain in liver and hope the 3 weeks off x get the mouth sores ready for my next dosage of x which is now 2500mg (2 pills am, 3 pills pm)
(()) C
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LaLady - Everything but the ice cream sounds like total crap. However, your sensible and clear enumeration of the what you are going through tells me the warrior is doing just fine and we can look forward to hearing of steady improvement. Watching all the time for the next update. I am on Day 4 of the clear liquid diet. Abdominal mayhem and energy/alertness is improving, lipase back to normal range. Sticking with the strictly clear liquids until Tuesday. Then I'll add almond milk and/or real juiced vegetables and see how it goes.
I made myself bone broth yesterday. All I wanted was some of the marrow from bones, but those tasty bits went into the trash. Fat won't be on the menu for a long time... Dairy probably won't be either. Enjoy that ice cream for me.
Thinking of you every day. I am so proud of you for getting this done. Way to go.
>Z<
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Cure-ious, yes, recent liver biopsy was almost identical to 2 previous ones (bone) that I am HER2 equivocal. No clear path. Doc sent most recent biopsy off for 4 additional tests. I have done treatments for both positive and negative HER2. Nothing lasted very long.
Lalady, glad to hear of your progress.
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hello LALady1,
I'm curious, why can’t you use the dexamethasone mouthwash to reduce and heal the mouth sores?
It’s working for me in curbing this partSE from the A-fakitor I’m taking....
My best wishes for increased and enjoyable eating....
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Has anyone experienced the issue of neutropenia fever? Of all the chemo I've been on Gemzar is the first to give me a bit of fever. Mostly it has been in the 99-99.6 range, which is no worry- just a bit uncomfortable. But, last night it spiked at 100.3. Supposed to call if it gets to 100.5. What I read is that you get put on antibiotics. That's complicated for me as I'm allergic to most normal antibiotics. Definitely a conversation I need to have with my MO.
Experiences?
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kaption: I have had 9 cycles of Gemzar and have not experienced the fevers. My neutrophils did drop to .6 but put me on neulasta and they have been fine since. Hope you feel better soon
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