How are people with liver mets doing?
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Jaywalker, I think a PET will show metabolic activity where a CT only shows growth or shrinkage. Welcome to our group, hope things continue to go well for you.
Mom and kaption, I called again late Friday and put the nurse on the spot. I was obviously very upset and asked her what she suggested since I have been off treatment for 3+ weeks. she said the Pharmacy asked her to call back Friday and when she did they were closed until MONDAY!!! OMG, I couldn't believe it. Then I asked to speak with my Dr. and she said he was gone for the day but I was on his radar for Monday. I think that is a good idea too to send an Email. Start documenting this stuff. I think he should have let me go ahead with another round of Abraxane until we were set up with Xeloda as he said it was working on liver mets. It did help with the ascites for sure which is my biggest problem right now. He didn't want to because of the neuropathy but I am willing to deal with this lesser problem for relief. I'll let you know what happens Monday and will be sending an Email today.
PDX, did they ever discuss reducing the dose of Ibrance? It seems to be a common problem that liver enzyme numbers go nuts on the higher dose, as with me. I reduced to the 75 and things cleared up.
Great picture babs! I hope you are feeling GOOD and having a wonderful time!
Yes kaayborg, How are you? We were hoping to see a family portrait!
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Hi - read two pages then had no more time, have to jump forward to here. Artist, I hope you received your tx by now. My speciality pharm does overnight when needed, you could ask, if you haven't received yet. I've been off anything for the liver lesions since they were found Oct 2nd. That was a f-up on part of nurses at clinic when it was first prescribed by the onc and then I didn't catch that bcz I decided to delay anyway and have a biopsy first. And more delay due to their f-ups again. I am glad to be away from all that incomplete energy. Nervous as to where I am at. But I am drinking down a huge dose of ellagitannins (Meeker rad and black raspberry powder) daily and using ramp hemp oil, really strong. So hopeful that complementary is helping the Xeloda I was on IF it was working on anything at all. But for the liver, no longer feeling the pain in 7th and 8th lobes, though some in front right sometimes and no longer in front left.
Am now off the Xeloda. The new bc specialist at the new center hugely questions whether Xeloda has been working at all. The liver lesions were growing rapidly. The lymph nodes all were radiated in April/May. Xeloda started at same period. I often wondered too. So I am now going on Afinitor / Aromasin. Had that choice or Taxol infusion 1x week. Or palliative care. He said he did not give infusions to patients in wheelchairs, and I am in one when we go out to places like that, cannot walk much and very weak. Lost 21 pounds in 3 weeks.
It's all turning around now, I feel it. Ate better yesterday, feel stronger today. Could be the Xeloda was kicking my butt too much for my own good and no one was listening. I was so dehydrated yesterday there were 3 sticks to get labs, they only got a little from each one and hard to use veins at that. My skin looked like I am 90. This is my third day off Xeloda.
New center at Goshen is "nice" and I now have under one roof a counselor, a nutritionist, a naturopathic doctor, acupuncturist, any my oncologist. Also met and an appt is being scheduled with a top thyroid cancer surgeon. Though I don't think the nodule in my thyroid that is stopping my voice and eating is cancer, but he is a good choice to remove the thyroid. Director of surgical oncology. Patients COME HERE for thyroid surgery, out of their own areas, his nurse told me he does a lot of those. Top 1% in his class, was employed at both Camp David and National Naval Medical Center in Bethesda, MD. He lives in my area because that is where he and wife were raised. Lucky me. Ran into him in elevator, he is very approachable. It was like a sign.
Am off to find out more on the new tx. Will try to stay caught up better than I have.
Diane
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Hi I had my first Gemzar infusion today. Compared to Abraxane it was harder. I’m dizzy and fatigued but I don’t care as long a it attcks and demolishes these liver mets.
Aurora
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No talk about reducing ibrance. From what I understood her onc wanted her on taxol in order to get ahead of things before it got too out of hand and chemo is no longer a option. I think part of the decision came because of what the MO saw on her scan. No the sure if it was progression but given the turn in her condition last week I imagine it may have been
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Ibrance is slow acting so that makes a lot of sense. You can consider going back to ibrance at a lower dose once the chemo is over.
>Z<
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Still contemplating my treatment options. Foundation One finds two mutations (CCND1 and CDKN2A) that upregulate CDK 4/6 and might suggest abemaciclib is a good option. Abemaciclib is attractive because I don't have to be on a trial, but this trial is interesting because one of the arms allows you to do abemaciclib with a PI3K inhibitor.
A Study of LY2835219 (Abemaciclib) in Combination With Therapies for Breast Cancer That Has Spread . We have at least one BCO member doing well on this trial. Not clear they will accept someone who has done Ibrance.
A Study of Abemaciclib (LY2835219) in Participants With Non-Small Cell Lung Cancer or Breast Cancer This trial tries to take advantage of the synergies between abemaciclib and immunotherapy. My doctor did not encourage PDL-1 inhibition right now and I have to find out why.
I am also looking at HDAC inhibitors and FGRF inhibitors, preferably in combination with hormone suppression.
Exemestane With or Without Entinostat in Treating Patients With Recurrent Hormone Receptor-Positive Breast Cancer That is Locally Advanced or Metastatic This is a huge Phase III of and HDAC inhibitor plus hormone suppression. HDAC inhibitors potentially aid in overcoming hormone resistance and they also have immuno-modulatory effects. I generally avoid phase III trials because I don't like randomized trials. I want to know I am getting the drug. Searching for a smaller trial of a different HDAC inhibitor. Entinostat got decent Phase II results in combination with exemestane but it is actually a weak HDAC inhibitor relative to other drugs in the pipeline.
This link takes you to an interesting table of HDAC inhibitors and their targets. As far as I can tell only Entinostat and Vorinostat trials are available for MBC but the pipeline is impressive.
Foundation One notes that I have FGFR1 amplification as well FGF4 and FGF19 amplification. These mutations suggest that my cancer is evading hormone suppression via the FGFR/FGF signaling pathway. These mutations also suggest that I might respond to the growing class of drugs that inhibit FGF receptors. There are over 20 FGFR inhibiting drugs in development but not that many trials for drugs that actually target FGFR1 and accept breast cancer patients.
NCI-MATCH: Targeted Therapy Directed by Genetic Testing in Treating Patients With Advanced Refractory Solid Tumors, Lymphomas, or Multiple Myeloma. Arm W gets access to AZD4547 a pretty cool FGFR inhibitor.
BGJ398 for Patients With Tumors With FGFR Genetic Alterations (CBGJ398XUS04) Cool drug. A Phase 1 study of BGJ398 reported a DCR of 50% (18/36), including 4 PRs and 14 SDs, for patients with FGFR1-amplified squamous non-small cell lung carcinoma (NSCLC); although no responses were reported for patients with other tumor types harboring FGFR1 alterations, 32% (10/31) of patients with FGFR1- or FGFR2-amplified breast cancer experienced stable disease. However, not clear this trial is still recruiting.
Fulvestrant, Palbociclib and Erdafitinib (JNJ42756493) in ER+/HER2-/FGFR-amplified Metastatic Breast Cancer
A Dose Finding Study Followed by a Safety and Efficacy Study in Patients With Advanced Solid Tumors or Multiple Myeloma With FGF/FGFR-Related Abnormalities (TAS-120)
Debio 1347-101 Phase I Trial in Advanced Solid Tumours With Fibroblast Growth Factor Receptor (FGFR) Alterations Strongest against FGFR2 amplification but some activity on FGFR1.
A Study of Debio 1347 Plus Fulvestrant in Patients With Metastatic Breast Cancer MSKCC. Strongest against FGFR2 amplification but some activity on FGFR1.
A Dose Escalation and Dose Expansion Study of PRN1371 in Adult Patients With Advanced Solid Tumors
Here is an interesting table of FGFR inhibitors and their activity against specific targets.
>Z<
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checking back in,
I had a port placed on Tuesday and my third TDM1 treatment Wednesday. Adjusting to the new treatment regimen.
I think of everyone often even if I don’t post much. I’ve been sorting through some emotional issues as I battle this dam disease fir the 4th time in 7 years. Gratefulto be here and still battling but fighting right now to find the positives.
Take care everyone
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Zar- Quick biopsy! What to try next? Abemaciclib, for sure. How to evaluate FGFR mutation vs ER as to which (both?) are drivers of the cancer? also, FGFR drugs seem like good but still early days? HDAC inhibitors were shown earlier to synergize with checkpoint inhibitors, so I am hoping to take that as a combo at some point. And the recent Nature papers indicate Abemaciclib and Ibrance would do better with immunotherapy, too. Are there any Abemaciclib/Keytruda (or better Atezo)/Faslodex trials? and from your genetics, no ESR mutation, no PI3K mutation?
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Z- Here is a trial of Abemaciclib with Keytruda: https://clinicaltrials.gov/ct2/show/NCT02779751
But no faslodex? or can you get that from your regular MO? probably not- but then again, you don't know if the cancer is ER-driven, or if it even matters, since Abemaciclib has activity on its own.
It is phase 1b, but they seem to have an unusually large number of test sites. None in New Mexico. Are you near Aurora, CO?
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I am looking at the F1 results from the September biopsy. The Caris Molecular Intelligence results from the the biopsy last week are due in a couple weeks. I don't even know if I am ER+ still.
However, in the meantime, I am studying the F1 report. The FGFR/FGF mutations in the F1 report suggest I am endocrine resistant. If true, it doesn't make sense to do hormone suppression without HDAC or FGFR inhibition to help overcome the endocrine resistance. I am trying to figure out if abemaciclib is going to overcome hormone therapy resistance in the presence of the FGFR mutations. I am assuming it doesn't until I learn otherwise. Abemaciclib needs to work on it's own if it is going to do anything. I would do abemaciclib as a monotherapy or maybe with a PI3K inhibitor.
I have the CCND1 and CDKN2A that suggest that CDK 4/6 inhibition would work (according to F1), but I have not seen any correlation between outcomes and CCND1 and CDKN2A) expression in the big Phase III trials of the any of the CDK 4/6 inhibitors. Also, abemaciclib was shown to be active after palbociclib on cell lines but we have no data on outcomes in a clinical setting. For these reasons, I am not 100% sold on abemaciclib as the next step.
Thank you for the trial reference. Adding to my post above.
>Z<
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Zar- think about the Abemaciclib-Keytruda trial because I see Hope Rugo at UCSF is doing it and I think she's pretty sharp about what's new, and Memorial Sloan Kettering is also doing this trial- perhaps its worthwhile consulting one of the trial docs to get their opinion based on your genetics results as to whether CDK4/6 inhibitors look like the way to go, and also to ask them why they think Abemaciclib might work with Keytruda, given that ER+ MBC is not known to respond well to immunotherapy- is there a reason they think the combo will work (other than the pre-clinical studies recently published)- of course the other study docs would know if FGFR1 inhibitors are the more promising way to go, as far as that's concerned
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Cure-ious - Thanks for the nudge. I am contacting the Abemaciclib/Keytruda trial because I would like to know what UCSF thinks. I know that the ibrance/keytruda trial at city of hope went nowhere but even discussing my case with these people will be interesting.
>Z<
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Cure-ious - Here is a trial you will like ...
A Study of Multiple Immunotherapy-Based Treatment Combinations in Hormone Receptor (HR)-Positive Human Epidermal Growth Factor Receptor 2 (HER2)-Negative Breast Cancer (MORPHEUS)
Just opened up.
>Z<
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Kaylynne I am doing fine enough. Thanks for thinking of me. Been busy and I'm still so much more tired on this chemo than the last. Hopefully things are settling down...forget if I posted my second hospital stay or not. More fever nonsense but it was nothing. Also had 4 migraines in 8 days so that tends to wear on a person. Meds help. Hopefully no more hormone craziness and they'll go away again.
Got good scan results...a few cm off the larger tumors though they are still conglomerate.. Added Pembro this last time but am neutropenic again...and so skipped second treatment of eribulin this cycle. I do feel glum overall despite the stability. Guess it all just feels more and more real. Not sure. Thinking of you Leftfoot...and all of you. Always reading. Artist if you don't get that Xeloda soon!
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Kaayborg - good to hear from you. I am glad the tumors are shrinking. It's getting real for me too with 20% liver involvement. One blessed day at a time. I do think the migraines are as likely the cause of some of the dark clouds ... it's hard to see the upside of things with pain in the picture. In truth you handle this all with grace.
>Z<
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Kasyborg. That’s wonderful that your mets are smaller. I consider that a win!
Bab
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Kaayborg, glad to hear the good scan results. No fun you were back in the hospital. Can't imagine 4 migraines in 8 days. Sounds excruciating. I hear you on things getting a bit too "real". Have been in a major funk about that recently, despite a positive scan.
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Guys I am throwing myself in to say hello.
I was in Hell. I saw it. Dani had another episode with the clots, you know the rule never go to the ER on a Holiday/weekend/doctor we broke all those rules. She had to go the ER thursday evening, we were in the Hospital till a few hours ago. Doctors were not in. The bottom line, the Urology team was messing with her. Finally she got the cystoscopy again with burning of the burning vessels in the bladder. While at the ER she went overr to the Rads department, because she could not have a break. Foley and all.
All doctors that look at it or were asked about it know and say that this is extremely rare in the bladder, Hemangioma, and the problem is this is not stopping, it's not the end. Now she is home, but still very anxious and apprehensive. I am looking for different options. This urologist, he wasn't in but his team did the dirty work, but he messed up badly.
Could anyone here give me an idea how can I find out WHO is an expert in something like this? How can I even look into it? In all the reading I did in the internet I could not find anything. We are desperate, it seems it's only a matter of time it will happen again. She's so bruised up in the area from so much trauma. She still cannot swallow, she weighs less than 80Lbs. She is trying very very hard. It's hard to come back from something like this, in the midst of radiation on top of it all. At least mets she could understand, but this is unthinkable. Blockage of urine, pain and having to deal with miserable doctors that want to access the situation before acting. I was with her all of this time, her husband was there but went back to be with the kids, we did not sleep or eat. Something has to be done. This is taking a real toll on her. Of course she needed blood transfusion again. Her counts all tanked.
if you have any doctors friends/family if you could ask how do I go about finding a very rare disease doc.
Thank you all.
I read your updates. Artist, your situation breaks my heart. it's unthinkable the uncaring of all these ppl.
Babs just a great picture, thanks for sharing with all of us.
Zar you and Curi-ous speak a language that i wish i would know, understand. It's so important. I cannot help you, but i'll support you.
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Mom - I am on my knees in prayer for you and Dani. I can't help any other way. I am praying that Dani finds the right care. I am praying that you find peace and the trauma and fear are lifted from your shoulders and from Dani's. I am so thankful you are both out of the ER and tomorrow is Monday when you can reach a real doctor.
So much for happy thanksgiving. This disease is ruthless.
Thank you for the post when all this is going on. You guys are in our hearts always.
>Z<
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Also prayers here, mom. Can SOME doctor you trust make a referral? So, very sorry.
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Momall, I am praying for you and Dani and I'm sorry you don't have any answers. I will ask my sister (she works at a hospital). She can ask around and I will try to get you an answer.
I spent Thanksgiving Day in the ER due to bad side effects from my trial drugs. I am weak, severely nauseated, and short of breath when I walk across the room. I have never experienced symptoms like these through the 3 years of stage 4 treatment. I may have to call it quits on the Oliparib.
Has anyone had any experience with parp inhibitors??
Through everything that is going on with all of us, I hope everyone could enjoy family over the Thanksgiving holiday.
Robin
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rpoole - are you doing any better?
>Z<
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Z, My nausea is not as bad, but I am still weak and wobbly on my feet. My oncologist had me hold the drugs over the weekend. I will discuss a dose reduction of drugs tomorrow and see what happens. But I can't continue feeling this bad!!
Thanks for asking!
Robin
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Well, it sounds like all of us had a rather challenging Thanksgiving weekend.....
Mom, MY heart is breaking for YOU and Dani! She has it sooooooo much harder than I right now. I can't believe in this day and age that there is not more info to be found on this condition. I hope someone chimes in soon with some insight. Prayers every day for you two.
leftfoot, kaayborg, JFL we all get the stress of emotional issues that's for sure. Especially during the Holidays is difficult. So many things just set off my "blue button".
leftfoot, I hope the SE's from the new treatment aren't too awful and it works like magic. A port will make life easier. I am glad you checked back in and hope you continue to do so.
bluebird, I am sooooo glad you are turning a corner. You have so much going to deal with. Good luck with the new thyroid doc. A big nope on the Xeloda. They PROMISED they will call Monday morning. I am sooooooo bloated and uncomfortable at this point I have been couch bound and nearly useless. I try and get up every 30 minutes or so to do a small chore like pulling out the Christmas decor or make the turkey soup. But I don't last long. Have a paracentesis on Tuesday thank God but YUCK!!!! I HATE it....
aurora, good luck on the Gemzar. Maybe the SE's will level out soon? You were on Abraxane a long time yes?
Robin, Jeez all three of those symptoms together equals misery. I hope you feel better VERY soon. Is that a med that can be reduced? Do the anti-nausea drugs work at all? I hope you can continue if it's working.
I hope this week brings us all a bit of relief.......
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Zar- What's up, girl?! I am concerned about you right now, its crazy when you are trying to figure out what to do, and this is taking awhile. I was watching a discussion between two oncologists who have different opinions about second-line after Femara/Ibrance, the one from MDA said to go in a different direction and assume resistance to Ibrance-like drugs has developed, whereas the other, from Dana Farber, was part of a trial testing Abemaciclib after Ibrance. In your case, you had a bit of chemo after Ibrance, so that might have re-sensitized the cancer to CDK inhibitors? something to ask about..
MomATT- I hate to be helpless, but don't know anything about this horrible hemangiomas, so I just really hope that she turns a corner, and ASAP!!! Hopefully somebody comes along with an MD degree, maybe we can find someone to "adopt" us on this board, just for general information and discussions.
RPoole- Are you on a clinical trial with Olaparib/PARP inhibitor? I have not taken Olapari, but it is supposed to be hlghly effective if you have the BRCA mutation. If and when CDK12 inhibitors become available they should work well in combination with PARP inhibitors on all breast cancers, because the CDK12 inhibitors will eliminate BRCA expression, regardless of whether the person has the BRCA mutation.
San Antonio breast conference is up next (Dec 5), that meeting has been dull last two years, so I am really hoping its time for some good news coming out of this conference, since all of us here seem to be having so many problems.
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Artist, I am sure they can reduce dosage on my trial drugs. The nurse told me that these 2 drugs together were great, if they could figure out the dosage. So apparently, Im not the only one struggling. The anti-nausea drugs don't do squat!!
Cure-ious, I am on a clinical trial with Oliparib and a WEE1 inhibitor. I am not BRCA positive but have the BARD1 gene that is closely related to BRCA. I did not know this about CDK12 inhibitors! Thanks for sharing and I will keep this on my radar.
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Mom, I asked my DH for you (he is doctor) who treats hemangiomas of bladder and he said urologist and that they are extremely rare. No info you don't already have. Wish I could be more helpful. This may sound like a silly question but has BC been ruled out in her bladder? I had read a stat once that in autopsies, they found nearly ALL persons with BC had it in their bladders.
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Robini sure hope the dosage change will make these terrible SEs abate and that you can function properly
Artist I’m appslled that you still don’t have your Ibrance. I would call the drs office 3 times a day so they move their asses! It’s just not right
Mom I’m so sorry for what dani is going through. I will reach out to some dr friends ( in LI) and ask who they would recommend. Will let you know what they say.
All I can say is BC sucks!
Babs
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Here it comes. Port question.
I am starting to get worried about my veins. I am considering a couple of plans for the next 4 months that involve a lot of sticks. I like everything about these plans, except for the sticks. I am up at midnight worrying about my veins. Everything went well with my biopsy except for the enormous bruise in my elbow pit from a bad stick.
In addition to some IV standard meds meds, I want to get frequent blood testing and I am considering complementary meds that are IV. Lets say it will be 20-25 IV's and maybe 6-12 blood draws between now and the end of March. I don't know if they can do contrast through a port during a scan but if so that could be 1-3 more sticks avoided with a port. After April I hope to be off IV type treatments.
Is it worth getting a port? I am honestly not sure I can get a port since a lot of the treatments that drive the need are not standard of care. I am just wondering if I should even inquire.
>Z<
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Z, If you get a power port, they can run contrast through it. My port was nicely hidden in my upper inner left arm, but due to the clotting, it is now gone. I am not planning on getting another right away, but I will in the future. With all the sticks you are planning for.....a port is reasonable.
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