How are people with liver mets doing?
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Kay- The first trial is a PARP inhibitor with immunotherapy- that would be a great option, especially if you are BRCA1-mutant?
The second is a phase 1 trial that just opened in January, but I can't find any information on what the drug is?! SC-005- can you call the trial nurse to ask what it is and how it supposed to be working?! How can you take a trial where they won't even disclose what the drug is?!
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Cure-ious - Back at ya with the peace and love. Hydrating as I respond.
>Z<
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Thank you Z. I asked my onc about a scan and she said the trial group will take one before I start but it sounds like I should have one before I decide to do a trial. I was in such shock after I heard the news that I didn't ask many questions. I called back and left a message yesterday asking if I should stay on the Xeloda for a few more cycles to be sure. I haven't received a call back yet. This all really scares the crap out of me. When we started Xeloda the first week of February, she told me I had maybe 2-3 months until my liver shut down if I did no treatment. So If the Xeloda truly isn't working, where does that leave me??
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Z- So glad you didn't need steroids to tolerate it!!
Kay- AACR meeting starts Saturday (!!) expect lots more press about ongoing trial updates and new drugs.
You should have a CDK7 inhibitor in your scopes for future treatment, it is in phase 1 right now just at Dana Farber, but keep any eye on it in case its good: NCI trial NCT03134638
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Cure-ious
I am not braca 1/2 mutant. I called OU back and the SC-005 drug and this is what I was told:
Antibody Drug Conjugates (ADCs) are monoclonal antibodies (mAbs) attached to biologically activedrugs by chemical linkers with labile bonds. By combining the unique targeting of mAbs with the cancer-killing ability of cytotoxic drugs, ADCs allow sensitive discrimination between healthy and diseased tissue.
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Kaylynne- I’m sorry you find yourself in this situation. If you recall, my TM’s doubled after the first cycle of X (400+ to 800+). I had a scan after cycle 2 that showed progression, but my TM’s only went up by 100 points. Since I’m playing the waiting game with insurance approval for my next treatment, I asked to stay on X for one more cycle. Since the velocity of the TM’s rising appeared to slow, my MO agreed. We’ll run TM’s again in 2 weeks. If they stabilize, I may ride this out a few more cycles until next scans...we’ll see—it’s all a guessing game.
Wishing you the best on whichever road you take.
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KC1010- Thanks so much. I asked to stay on X but my onc said that most trials require being off any meds for a certain period of time. I know this to be true from past experience. Do you know what your next treatment will be?
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Kaylynne- I'm hoping to get Y90 approved by insurance, and my MO is working on getting Opdivo (immunotherapy) approved for compassionate use from Bristol-Myers Squibb. My MO also believes that additional chemos will not work on my cancer.I have the Chek2 mutation, as well as ESR1 and FGFR1 alterations.
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Kaylynne - I haven't done Xeloda. I don't know how fast it is supposed to act. That is a good question for the xeloda thread. The problem is that if it takes 3 months to respond, there is a risk. But if that is the case, a trial is as risky. This incoming 2-3 month missile really tricky to manage.
We have such a vibrant discussion of local treatment of liver mets ... like TACE or Y90. I can't remember if you've pulled that string. But something fast acting that will preserve liver function and allow you to explore trials and slow moving chemo ... that would be local treatment of liver mets. Nothing quite like it as efficacy PLUS speed. You need something fast so people stop giving you a 2-3 month deadline.
If you haven't, you need to bypass the MO ASAP and go straight to an interventional radiologist and discuss this.
The question regarding the ADC is what the target is and why they think your cancer has this target. The ADC's are amazing but they require expression of certain anti-bodies to work.
It's a weird trial with very little background information available online. Things don't usually go to trial without a couple of pre-clinical papers. I see nothing. If they push that trial, tell them you have some wonky friends who want to see the pre-clinical trial data.
>Z<
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Z - I was told I had too many liver mets to consider Y90 or TACE. I will definitely ask about pre-clinical trail data.
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Kaylynne - have you met with an Interventional Radiologist? My MO was against localized treatment to the liver, and didn't think I would be a candidate. The IR I met with yesterday said I was a candidate. I have at least 2 larger tumors, with the largest now measuring 4+cm. I also have numerous smaller ones. He offered to show me my CT scan, but I was too chicken. I was too scared to see how many 'numerous' means, and exactly how bad it is.
I'm now have radiating pain in my right trapezius muscle every time I breathe in. I'm a little worried that it's either from inflammation in my liver, or mets in my ribs/spine. Oh the joys. :
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Hi Kaylynne,
There is a lot of research around androgen receptors in triple negative and some promising resu!ts. Here's an article.
http://www.ascopost.com/issues/june-10-2017/target...
You might ask your doctor about it. There are a list of trials in one of the side panels. I'm looking at a couple of trials in the HR+ realm if my upcoming biopsy shows any AR activity. So far nothing is working for me. So far busted out of 3 lines in less than a year.
All the best,
Mary
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Kaylynn. I had at least eight tumors in my liver. Surely there is an I R you can consult with in OKC. I also had mets in lung and chest.💞
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Hi ladies! I've read every post on this liver mets forum, and it's been so helpful. Every time, I want to respond, I worry that I won't be able to keep up and actively participate - but I want to try!
Z - I am so impressed with your fasting! I gave up on the thermometer during cold capping also. Watch out for frostbite though. If you dry off each cap and mold it before placing it on your head, it should be perfect.
Husband 11 - Broccoli extracts, I will be a fan of that!
In February, I felt absolutely fantastic with no symptoms after my stage 2 diagnosis in 2016. However, I found out I had liver mets - 1 small spot - 9 mm. My MO (who I once upon a time liked) said I had on average 2 years left to live. Aargh! He started me on Ibrance. I asked him if I could also try some type of ablation therapy or localized treatment. He laughed and laughed. Then he said that if it made me feel better I could try whatever made me happy, but nothing other than systemic therapy would help. I cried at the time, but if I could do it over, my middle finger would flip up.
A few days later I made an appointment with an IR with no referral. The IR said he could perform a microwave ablation on the tumor. I found a new MO a few days later. She was more positive and open to my ideas and discussed my plan with a team of doctors. They agreed that I was a candidate for the localized treatment and to also continue taking Ibrance.
Two weeks later, I had the microwave ablation. On Friday, I will have the first MRI of my liver since the ablation.
I want to thank everyone for your posts and discussions. It's helped me realize that one pessimistic doctor does not get to make all the decisions about my life.
Hugs to everyone!
~Kar
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Kaylynne - My MO felt that I have too many mets for TACE, but the IR did not. I don't think anyone could have more mets than I do. In the end I went with systemic chemo, but not because I could not get TACE. If you you have not talked to an IR who loves his TACE, you should consider it.
KarPC - The way to handle the volume on this thread is to read the last three posts, respond and tell us what is going on with you. It's not necessary or expected to read everything and respond to everyone. Collectively the conversation continues.
The experience you shared, for example, is very important for us to read.
My first day eating is today. I am eating very very well. Feeling tired. Some combination of getting off a fast, abraxane and cancer.
>Z<
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Kaylynne, I would push for a scan before jumping ship on Xeloda. All my numbers flared on Xeloda - tumor markers, liver enzymes, alkaline phosphatase for about 4 months. I had an extreme case where I started Xeloda with 70% or so of my liver being comprised of mets. By my first PET 3 months later, all liver lesions were completely metabolically inactive. My liver regenerated on Xeloda and has never been nearly that bad since, despite several additional progressions since then and 2 years passing.
Also, I just had Y90 liver radioembolization yesterday which is suited for higher volume tumor loads and diffuse mets. My liver is currently around 25 - 35% comprised of mets (possibly more, as IR said he found additional mets during the Y90 mapping procedure which uses more sensitive scans).
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KarPC. I hope on Friday the MRI sees good results like I had. I had my last y90 last April. In August my PET showed no uptake. Sometimes it takes awhile to see the true results on a scan. Congrats on self advocating, maybe someday all MOs will know to refer to IR. Obviously, not yet. We are blazing a path for future liver metsters.💞
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Thanks everyone for all the good advice and encouragement. I found an IR that is allowing me to drop off images so he can determine if I am eligible for any type of radiation including Y90 and Tace. These are the images from the emergency room visit a few weeks ago. This gives me hope and it's because of you guys. I am not on anything at the moment and that is scary but tomorrow is the appointment for the trials at OU Med.
I asked my MO again about a scan. She wants to wait until after I meet with the trial people. Tomorrow is my one year since diagnosis. I am not calling it an anniversary because I definitely don't want to celebrate cancer. I am thankful for every one of those 365 days and pray for me more to come.
Kay
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Lumpie shared this on the topic 'Breaking Research News from sources other than BreastCancer.org':
Surgical Resection vs Systemic Therapy for Breast Cancer Liver Metastases
http://www.practiceupdate.com/c/66213/67/13/?elsca...
- This case-matched analysis was designed to evaluate outcomes among patients with breast cancer metastatic to the liver who received systemic therapy alone or in combination with surgical resection. The resection group had a median survival (after matching) of 82 months vs 31 months, with 5-year survival rates of 69% vs 24%.
- The study authors conclude that liver resection combined with systemic treatment may result in improved overall survival relative to systemic treatment alone for patients with breast cancer liver metastases.
I couldn't read the entire article, but am planning on having my MO look for it.
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YAY Kaylynn. Can't wait to hear what IR has to say.💞
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Nice work Kaylynn .. I'm also interested in hearing what the IR says.
Did you get a reason to drop Xeloda without a scan ... why not continue Xeloda while you wait for acceptance into the trial? If the trial wants to scan you, fine, but it seems that they should let you stay on Xeloda until the scan proves progression.
>Z<
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Grannax2 - Thanks. Your results from the Y90 are very encouraging. It helps to know I may not see good results right away. I'll keep my expectations in check.
kaylynne - It's difficult waiting for the next step in treatment. I am glad you are meeting with the IR. Looking forward to hearing how it goes!
Z - I hope you are still feeling fine after your treatment. Thanks for the advice!
Z & KPW3 - Thanks for posting this study. The survival rate of the liver resection and systemic group is more encouraging than studies I usually read. The patient screening was between 1983 and 2013. I would think the current survival rate would be even higher. I hope we see more studies like this. Or perhaps, I may enjoy living in the Netherlands and France.
RE: Surgical Resection vs Systemic Therapy for Breast Cancer Liver Metastases. http://www.practiceupdate.com/c/66213/67/13/?elsca...
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So...regarding insurance coverage for Y90...BCBS came back with the ‘no pre-approvals offered/necessary. The procedure will be covered as long as it adheres to the policy’. Which, of course, it does not. Y90 is considered ‘experimental’ for BC liver mets. I work for a large company, who is self-insured through BCBS. I now have to go to the president and VP of HR to ask that they cover this treatment. My IR gave me a great appeal letter with all of the necessary information to hopefully push this through. However, I HATE that I have to fight for this, and divulge all of my personal medical history to my employer. They’re a relatively ‘young’ company, and HR has admitted to me in the past that they have no experience with people like me—with a terminal disease. I’m praying they do the right thing, and agree to cover Y90
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KC. Wow. There is a HUGE conflict between privacy and health care in the situation you describe. I would ask about the company policy regarding confidentiality of the discussion with the HR department BEFORE you have any further discussion. Your direct management should NOT have this information. The policy should be written and clearly apply to you. Since the company is young, they may not have thought this through.
Personally, I am thinking lawyer, but you may be able to handle this yourself.
Rooting for you.
>Z<
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Experimental? Then why do other big insurance co approve it? Makes no sense. You're a fighter, I'm glad you have a good appeal letter.💞
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KC, Z is correct. HR is not responsible for making medical decisions. That is why your company contracts with BCBS of IL which is owned by Health Care Services Corporation (HSCS). Medical policy is a policy that HCSC uses to determine medical coverage. Medical policy is not developed by your company's HR department so even if your HR department "approved" you for those services BCBS could still deny the services and would not pay for them.
I would go back to my IR and ask that they get a formal approval or denial from BCBS. You should receive a formal approval/denial letter in the mail from BCBS.
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I have some good news, my CT scan and bloodwork indicate ongoing NEAD since April last year... All the best my MBC sisters xx
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That is great news Daywalker. Thanks for sharing it with us. Next week my wife and I go into the onc's office to hear the results of her latest scan and blood work. It's a lot of anxiety. Truly frightening waiting for news.
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I agree, waiting for news is very hard... I am so tired today even though I had good news. Please hug Beverly for me Husband11, her and I have exchanged messages before, she is such a sweet lady x
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I am bloated in my abdoment like I've never seen before. Mild constipation doesn't seem like enough to explain this. I was mildly bloated before my first Abraxane IV on Monday and now it's really extreme. Is there a way to distinguish acites from something gastric like IBC? What tests show acites? This whole boating thing is new to me. Not happy with the bloating but otherwise I feel fine.
Did you ever get severely bloated? How did you figure out what was going on? How did you resolve it.
>Z<
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