How are people with liver mets doing?
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sorry to hear about your woes and the delay in getting the procedure approved KC1010, I hope you experience a swift and positive outcome. it's unsettling having to wait when time is of the essence in these matters....I understand your frustrations but try to stay positive, isn't there something the MO can offer you while you wait to hear back from BCBS? What about the abraxane like Z is getting
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KC1010-I sure hope that you can get the Y90 approved. I also have BCBS and the Y90 was approved for me. What is their reasoning for denying the treatment?
Z- I have been thinking of you today and praying that your treatment goes well. The fasting information is so interesting.
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BabyRuth - my IR told me that BCBS denied Y90 95% of the time, but hopes to win on appeals. I’m so happy to hear that BCBS approved you—gives me hope. Since my MO does not think that any add’l chemo will be effective, hopefully the appeal process goes quickly.
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Aetna apprive mine with no appeals. They are a big company too. Makes me furious that you might not get what you need because of an insurance company. Grrr
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KC1010, I am sorry you are dealing with this denial, but keep fighting for it. Also I don't understand why your oncologist said he doesn't "THINK" any additional chemo would work. How will he know unless he tries!!! My oncologist told me after I failed 2 different chemo, that she didn't think anything was going to work for me. I would not lie down and take what she thought!! I tried Carbo and had a complete response and the only reason I stopped after 4 months was low platelets. Now I'm on Abraxane and my TM's have fell from 625 - 156. Maybe a second opinion is in order....be your own advocate!
I do pray BSBS approves the Y90 for you!
Robin
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Z-you are in my thoughts today as you receive the first of your chemo treatments.
KC1010-someone needs to kick those bottom feeder insurance companies' butts. Y90 is increasingly being employed for MBC liver mets and they need to get on board. I have military insurance and it was approved. It may help to make sure that the diagnosis code specifically includes the words "liver and cancer".
Best to all, MJH
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I finished Y90 today and all went well! In recovery now for the next few hours.
Z, hope all went well today. You are so tough to withstand the fast. I believe the benefits are extraordinary if one can manage to do a full or at least modified/mini fast. I might try a modified/partial fast on Doxil now that I am off the cold caps. And will be insisting on no Dexamethasone next time!
KC, my IR intentionally scheduled the Y90 out farther to allow time for insurance denial/appeal process. He said the insurance companies nearly always approve ultimately. I think he is actively involved in writing the appeals and providing the required two publications of the benefit in a peer reviewed journal data. If they deny, please request to see the appeal submission letter. It is almost completely based on what the letter says. I was denied Ibrance in early 2015 in a similar scenario - not FDA approved yet for my indication but there was good trial data in peer reviewed journals. I asked to see the letter and almost fell out of my chair. It said I was a Stage 2 BC patient and didn't include any necessary information. The social worker who wrote it was incompetent and didn't realize she needed to state I was Stage 4 (because hospital records still refer to most patients as their originally presenting stage) and didn't bother checking the specific indications for the drug to make sure to mention those. I have heard of others having a similar experience. I ended up writing the appeal myself after reading the law on when insurance co's are required to cover and it was approved. There are special protections for cancer treatments.
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JFL it’s good to hear the procedure went well and you’re recovering. I’m very happy for you
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Z,
Your fast is amazing, I'm lucky to do a modified fast.
JFL,
Happy that your procedure went well. I wrote to my MO after meeting with an IR for Y90.
I sent her the publication link and said I wanted to discuss this with her. Her reply, “bad idea, your choice is “. I replied that I didn't know exactly what “ your choice is" meant and could she tell me why this is such a bad idea. Previously when I mentioned this she replied “ it doesn't extend life”. I'm feeling really low at the moment, however, I'm not giving up. Is your MO more positive?
KC1010,
Don't give up, I'm going to pursue this.
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Robin - I couldn't agree with you more regarding Chemo. I'm getting another opinion on 4/24. Even the IR today said I failed many chemos since my stage 2b diagnosis in 2014. I don't know how they can say I failed any of my initial chemos, as I only took them for a short period of time, then moved on to Anastrazole as maintenance. I was considered cancer free for the 2 years until the mets were found. How can they say the first chemos failed me when I was no longer on them? Also, Gemzar worked for me for 3 months (the only time my TM's went down, and mets were stable or shrunk), but I was getting fevers/chills 2 nights a week while on it. They added a steroid to stop the fevers, which worked, but did it also diminish the effects of Gemzar? I had progression on my next scan after the steroid was added. I'm thinking about asking to be put back in Gemzar, without the steroids. I can live with 2 nights of fevers if it's knocking out these mets.
JFL - congrats on finishing Y90–may it work wonders for you!
Max/Mia/MJH/Grannax, and everyone else - thanks for the tips on getting insurance approved, and your support to keep fighting the fight The good news is that the IR said that as soon as insurance approves, we can schedule mapping in a matter of days.
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another interesting story about a new understanding of the human body that will affect the way they will treat cancer in the—hopefully for all of us—near future...(but not for the next ten years according to my gastroenterologist at MSKCC) yikes...I hope he is wrong...Enjoy!
Microbial medicine is in its early stages, but some researchers think that monitoring our microbiome will soon become a daily event that provides a brown goldmine of information about our health.
More than half your body is not human
BBC News USHuman cells make up only 43% of the body's total cell count, while the rest are microscopic colonists. Read the full story
Shared from Apple News
Sent from iPad
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KC1010 - hugs. If Y90 is denied, think of it as a sign that your path is in a different direction. Don't give up either way. I am expecting it will be approved. I hope there is another onc on your radar with potentially more ideas. Although I like your oncs persistence on Y90, I don't believe you should feel like you are short on options. For one thing, people go back to chemos and treatments ... the cancer you have now is not the cancer you had in 2014. Steroids can interfere with the treatment, so pull that gemzar string.
You may not feel like an expert on cancer, but you are an expert on yourself. Someone on this forum reported that doctors have 11 minutes to deal with your case at each visit. It is not hard to imagine that the smartest doc in the world would not figure out your next step in 11 minutes. You think about your situation a lot more, and that gives you a distinct advantage.
And thank you for your kind thoughts.
Miaomix, BabyRuth, MJH, everyone. Went well. No side effects, yet. When do you start getting side effects on this stuff? If I don't have an appreciable side effects I am going to go for the full dose next week. Today was 70%.
Third day of fast ends tomorrow am. It was easy by late the second day. Hours 24 to 36 were tough. I didn't think I could do it. Its the transition to ketosis. Ah but ketosis is a bit of a buzz/high high. Today (day 3), full ketosis mode, I got 4!?! hours of exercise during and after IV. Exercise may help chemo get into that dis-regulated tumor blood supply.
Cold caps felt good. I got tired of measuring the temperature and started wearing them colder than indicated (-28C). I really didn't mind.
I exercised for 4 hours after chemo, then I lay around with heating pads over my liver. Heat may help blood flow into tumor and I wasn't good for much else. This evening I am in more pain than usual. Cancer dying is a reasonable explanation. I am going with that thought and focusing on figuring out what to eat tomorrow morning, for the first time in 60 hours.
Cannabis has been helping with pain but it is highly anti-inflammatory. Really not sure whether or not this is the moment to stop inflammation. Better to do nothing tonight. My plan is to soldier through the mild liver pain. Not so hard mentally when one can realistically assume it is the drug working. Abraxane stays in my system 13-21 hours. I am trying to be thoughtful about everything I do to maximize the impact of the drug in this time.
Tough day emotionally for the family. It was the first time my older daughter (14) had to actually engage in my treatment. That was pretty real for her. She broke down during the infusion. Nurses were awesome.
My husband had to deal with my minor melt down on the way to the infusion... it's all a little real for me ... and then went on to have a rough day himself. Finally, it's my younger daughters birthday (12) !?!!? In the afternoon we had to pull ourselves together and make this her day. It was a good thing and tough at the same time.
Max - A modified fast is fine and there is active research and a lot of info on what it should look like. Valter Longo of USC is a leading researcher. He wrote a book called the Longevity Diet. There is a section in there on fasting and cancer treatments. He developed a fast-mimicking diet after struggling to complete trials that required a 3 day water fast (what I did) ... nobody complied. He describes the protocol to pair with chemo in the book. It really has nothing to longevity, which is confusing, but the plan and explanation is there, clear and well written.
>Z<
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KC1010, I'm so glad you are getting a second opinion. My oncologist pulled me off Doxil after 2 low dose treatments and said it was not working. My 2nd opinion oncologist said there is no way she would know that after only 2 treatments. She told me to push for the Doxil as my next treatment after Abraxane stops working. I'm praying I get a long time on Abraxane!! As long as my health allows it.....i will try every drug option out there. Gemzar is a tough chemo for sure. I had one dose added in to my carbo treatment and it put me in the ER. So we pulled the Gem. Since you are able to tolerate Gem so well and it works....I would push to get back on this.
Z, Glad to hear you have 1 treatment in the books! Bless your daughter's heart
Robin
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z you had only water for three days! I had a one 70 calorie yogurt to be NPO before my CT scan 7 hours later and I was hangury and short with the tech who said they were not going to use contrast. Short story it’s done correctly with contrast and now the wait for the report. Please be kind to yourself, you have too much on your plate and need to take time for yourself and your family. Us breastcancer.org people will be fine. What we will do to ensure our cancer dies! I suffer with muscle and joint pain on arimidex even though I’m ER neg just in case there are some mutant ER+ cells around! I am happy you are doing fine on paxitaxol, you can live without hair (cold cap will work though) but not with liver mets! The world needs you and so does your family! You got this!
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KC thinking of you. As others have proven a different can do the trick. Get your second opinion. I' sure things will get better when you have a plan.
Going to watch this video on fasting!
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Z - you amaze me! You fast for 48+ hours, and still have the strength to work out? I'd be too light headed to do any real exercise...I almost faint when I get up from a sitting position too quickly. Sorry it was such a tough day for the family—hugs back at you!
Thank you, everyone, for the well wishes and advice. It's so great to have this group of ladies (and men) that support each other. Not one person in my family or friends understand what I'm going through. They all think I'm going to 'beat' this. My DH is a godsend, and he's starting to understand more and more the reality. He's an absolute wonderful father to our soon to be 6yr old DD. This gives me comfort and solace to know they have each other.
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I have a cat scan of my body on Friday. I don't think the abraxane is working. I do have a good appetite even with liver mets. I have bone and lymph node mets and so far no pain. But I expect progression and am fearful I am going to get the talk. I am supposedly Triple Positive now. I just don't think I am. Herceptin and perjeta did not stop progression. Plus I have a numb chin and my MRI was clean so today I am going to the dentist. Nobody understands this is going to take me. I feel so alone and scare
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lisajo- I’m sorry you are going through this.
I can tell you about my numb chin. In November 2016 the right side of my chin went numb ( but not the lip). I had a CT and it looked fine ( we were in FL for the month). When I got home I had a brain MRI. A small lesion was seen over the right eyebrow. I had rads on it. In the meantime the chin became normal again. My RO is not positive the lesion was what causing the numb chin. He said the numb chin was coming from the trigeminal nerve. It’s possible but unlikely that the lesion was somehow interacting with the nerve. I needed the brain rads, no matter what and that lesion has been stable.
I might recommend seeing a neurologist. They are really the only specialist that would know what is going on.
As far as being triple positive, when was your last biopsy? I was originally triple positive and H&P failed me too. As I’ve mentioned my HER2 is neither strongly positive or negative. I was treated as negative, now back to HER2 positive after special liver biopsy tests through Mayo. “Equivocal “ folks need their biopsies watched. We’re tricky.
Hope this helps.
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most people live in a dissassociated state even when all is well....Shakespeare, the Buddha, Jung spoke at length about the dream world we tend to inhabit. The realities of stage four cancer are simply too scary to digest and accept. Like your family and friends, KC1010, mine too prefer to live in a world where they can feel safe and shielded from the reality of cancer treatments and outcomes.
I have to admit, though, that likewise, only a few years ago, I too believed that I would be okay. Cancer was only a distant nightmare, something that happened to other people. It was not supposed to happen to me...and yet here's we all are....Like you, i'm grateful for the company....
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My brain and jaw were negative. I had a lymph node tested March 2017, that is when they said I was triple positive. So I am being treated as if I am. Can a person have progression and still feel good?
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I've been asking myself the same question Lisajo6, my cancer markers and pet scan results contradict how I feel. However, I do remind myself that I was asymptomatic when I was diagnosed with MBC, so better be safe than sorry. I'm following the protocol as prescribed by my MOand hoping for the best....
I'm sending you lots of hugs. I hope you get strength and clarity from the test, and feel better soon....
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lisajo-you are not alone at all. You have all of us here supporting you every step of the way. I hope your CT scan on Friday comes back with no progression and that your trip to the dentist provides the answers about your numb chin. If not, continue to seek out help. Sending you many hugs and prayers.
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Thank you ladies. You are all so awesome and kind. As you can tell, I am a very anxious person. I am sitting in my classroom at school while the kids take the state test, and all I can do is think about if I can go on my vacation to the OuterBanks in June. Will I be here for my grandson's 9th birthday in July.......plus I sleep little and abraxane and I do not get along.
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hello Z, glad all went well yesterday. Your positive experience with cold caps and Abraxane is encouraging to me. You were not only able to stick to your fast but managed to exercise on top of that and celebrate your daughter birthday. You are really a strong and courageous woman. May you get the maximum and long lasting benefits from this treatment and all your efforts.
Is there a correlation between efficiency and side effects? I'm asking because I've been taking Tamoxifen and I'm not suffering from the usual side effects. And Afinitor even at a higher dose has been manageable so far.
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Thanks for the update Zarovka. You are in my prayers, as are all of you. Z, you keep bringing forward such fascinating ideas and innovations. I've been reading the research on fasting and chemo and it sounds very worth while. I'll read up on the modified fast you mention. 72 hrs without food sounds way too hard for most anyone.
Lately I've been reading about broccoli extracts and their potential for benefit to cancer patients. There is a clinical trial on right now where they have been able to reverse HR positive resistance to anti hormonal therapy by using sulforadex, a patented delivery system for sulforaphane, a compound found in broccoli. A phase 2b trial in underway, and results are expected to be reported in mid 2018.
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OMG. Steel cut oats, almond milk, and walnut oil. Breakfast ... my heart beats so that I can hardly speak! Broke down last night and had a half a rice grain of cannabis oil for the liver pain ... man when sleep + pain relief is the goal nothing beats MMJ for me. Some pain this morning. Resting this morning but hike and yoga planned for the PM. And then taxes! I can see being functional for the rest of the week. Boo yeah.
bstein - You make an excellent point. I am just beginning to get comfortable with the idea that I can live without hair. The goal is that Abraxane works and I am on Abraxane for a while. IOW, if things go well, I lose my hair. And, the whole cold cap thing will have been for nothing. Cold caps for years is not a thing. I can't figure out where to buy them and the rental is too high for prolonged use. Also, nobody knows if you can keep your hair with cold caps when you are on these IV's for months. There is a point where the chemo wins and the hair follicles lose, I am sure.
Then why do cold caps. Basically, the decision/need to move to chemo came on faster than my "process". I think I am just buying time to get comfortable with where I am in this minefield.
KC - that feeling of weakness occurs when you are still processing carbs (glycolosis) and it gets worse until your body figures out the carbs aint comin' and you switch to ketosis where your body starts metabolizing fats. The switch is rough, but once ketosis kicks in, your energy level jumps. I was hungry but otherwise more alert and energetic than I have been in weeks.
Lisa - You mentioned (I think) that you are going to the Cleveland Clinic for a second opinion? When is that? You need to focus on that second opinion ... You need to follow your gut until you have a treatment plan that feels like a good path. You need more treatment options ... which is a second, third, fourth opinion ... until you get one that your gut says is reasonable. When you start looking at trials, the treatment options are so vast as to be overwhelming. A world class cancer center will sort that out for you.
You can have progression and feel good.
>Z<
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Reposting from one of the research threads I follow ... I am assuming this is for people with very localized liver mets and low anxiety about medical procedures. But wow the survival rate.
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.
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I haven't been keeping up with the thread very well. Sorry about that. I have had 2 cycles of Xeloda and my tumor markers went from 122 to 182 and 174 to 260. This is the highest they have been. Onc says no more Xeloda. She reached out to OU Medical Center for me (shocked and amazed) and they have two trials available. Please if anyone knows anything about these I would appreciate the information. If I don't do the trial, onc says Havalen next and then one other but she doesn't really think either will work.
My one year since diagnosis is April 12th. I'll never forget that day.
Here are the links to the 2 trials. I value you guys so much. My appointment with OU is Thursday morning.
https://clinicaltrials.gov/ct2/show/study/NCT02657...
https://clinicaltrials.gov/ct2/show/NCT03316794
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Peace and love, Z, enjoy the sunshine and the hike today... don't forget to hydrate, hydrate, hydrate, de-toxify...
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Kaylynne - Flare reactions on Xeloda and many other drugs occur. They are not common, but switching without a scan is not something I would agree to.
But the combination of a PARP inhibitor and a checkpoint inhibitor looks really good. That combination is knocking it out of the house, just with slightly different agents. Both of these drugs are well tested in humans. Great trial. I would have them explain why they think a PARP inhibitor is the right match for your diagnosis.
Regarding the second trial, I can't get information on SC-005. It's possible the acronym they use in the trial description is just not common and there is another name. Ask what kind of agent it is, what studies have been done that support this clinical trial .... any human trials? Does it have another name? If this is a first in human trial, I would not do it. Especially with the other trial as an option.
Whenever you enter a trial the question you ask is basically why is this trial good for you. Drill into that with follow up questions. What evidence do they have that these drugs are effective with your diagnosis. Drill drill drill. You may not understand the answers, but keep asking questions. If they don't have answers, they didn't look very closely at the situation.
>Z<
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