How are people with liver mets doing?
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Read this morning:
How Diabetes Can Elevate The Risk Of Cancer
.......And now that a new study validates the idea of diabetes being connected to cancer, the news come as both good and bad to the researchers. It's good because finding another link can be seen as another step closer to understanding what makes cancer tick and how it can be cured, and bad because people with diabetes have one more deadly disease added on to the list.
"Cancer and diabetes are two of the worst health problems in developed countries, and there's a link between the two. For cancer, half of the story is still genetics. It's only recently we realized there is another half that we missed, which is the microenvironment," study author Prof. Mingming Wu said.
Basically, the research explains that how cancer will grow and spread is highly dependent on the microenvironment where it is, and the elevated blood sugar in people with diabetes can help it move around more easily. This happens through a process called "glycation," which is the change that happens around collagen fibers caused by diabetes.
The researchers believe more work needs to be done. Moving forward, the researchers aim to differentiate the mechanical and chemical impact of glycation in the metastasis process, which is when the tumor cells start spreading.
I can't believe that they're arriving at this conclusion NOW!! Let me tell you, we're gonna need A LOT of positive thinking if we're to survive so much ignorance and lack of common sense! She says as she embarks on taking a cancer pill that will dangerously raise her blood sugar levels.....
I see checking into a mental institution in my future....
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Is anyone participating in this promising clinical trial being conducted at MT Sinai? It does sounds too good to be true, since it's intelligence is in direct contrast to the stupidity demonstrated in the shocking article I posted above.
Researchers develop treatment that turns tumors into cancer vaccine factories.
Researchers at Mount Sinai have developed a novel approach to cancer immunotherapy, injecting immune stimulants directly into a tumor to teach the immune system to destroy it and other tumor cells throughout the body.
The "in situ vaccination" worked so well in patients with advanced-stage lymphoma that it is also undergoing trials in breast and head and neck cancer patients, according to a study published in Nature Medicine in April.
The treatment consists of administering a series of immune stimulants directly into one tumor site. The first stimulant recruits important immune cells called dendritic cells that act like generals of the immune army. The second stimulant activates the dendritic cells, which then instruct T cells, the immune system's soldiers, to kill cancer cells and spare non-cancer cells. This immune army learns to recognize features of the tumor cells so it can seek them out and destroy them throughout the body, essentially turning the tumor into a cancer vaccine factory.( ain't this grand?)
"The in situ vaccine approach has broad implications for multiple types of cancer," said lead author Joshua Brody, MD, Director of the Lymphoma Immunotherapy Program at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai. "This method could also increase the success of other immunotherapies such as checkpoint blockade."
After testing the lymphoma vaccine in the lab, it was tested in 11 patients in a clinical trial. Some patients had full remission from months to years. In lab tests in mice, the vaccine drastically increased the success of checkpoint blockade immunotherapy, the type of immunotherapy responsible for the complete remission of former President Jimmy Carter's cancer and the focus of the 2018 Nobel Prize in Medicine.
A clinical trial for lymphoma, breast, and head and neck cancer patients opened in March to test the vaccine with checkpoint blockade drugs. Because the combined immune therapy was at least three times more powerful than either checkpoint blockade or the vaccine by themselves, researchers are extremely optimistic about how effective this may be in patients in this new trial. The in situ vaccine is also being tested in the lab in liver and ovarian cancer.
Cure-ious, what say yee? Is this as good as it sounds? Or should I curb my enthusiasm? These are the clinical trials and approaches that get me all positively charged and hopeful about our collective future.
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JFL - I have been seeing my regular oral surgeon since he extracted my molar last summer. He was aware that I'd been on Xgeva for two years and had me come in regularly to monitor healing. I had some strange sensations in my teeth in December, but I was just starting this trial and freaking out about that, so when the sensations passed, I stop worrying about it. In late January, a bone fragment protruded from the extraction site, but showed no sign of infection. Standard treatment is very conservative, painting the site with chlorhexadine and keeping the mouth as clean as possible. This tiny chip came out about a month ago, but there is another one presenting. I will probably have to get a panoramic x-ray to determine the extent of the bone death. My onc referred me to one of the dental oncologists at MDA, as he hadn't been able to find any other logical reasons for the inflammation. The culture showed a tiny amount of streptococcus, which is a common mouth bacteria, so signs point to yes. We'll see what this DDS has to say.
Miao, all I know is that I was given a list of prohibited meds at the beginning of the trial and steroids are an absolute deal-breaking no-no. I made sure everyone who was treating me at the MDA ER know to contact my study coordinator and I carry a list of prohibited meds on me. My biggest fear has been getting booted from this trial.
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Kattysmith, I’m sure they have very good reasons for the list of what not to take, and I agree that not jeopardizing the potential life-saving results from the clinical trial was a wise choice. Best of luck to us and all the rest, as we embark on our various therapies.
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got my latest CT results today. I’m stable from neck down. That’s good news. Waiting for some clarification as radiologist used ZnED in one place but mentioned no change to lesions in another. I don’t care much either way as there was nothing new and nothing growing.
Next up repeat echocardiogram to see if I can stay in my current regimen and an appointment for a GI scope to see if this is a cause of my continuing anemia. Also my follow up brain MRI.
For now I am happy that the CT was good
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awesome, leftfoot, congratulations- celebrate every good scan!!
Miao, I'm so excited by all the stuff you are bringing up here! So, I am not familiar with the trial at Mt Sinai and will go read the details, and it sounds like it might be similar to the trial they are doing at Stanford, where they inject CpG right into the tumor and it activates the immune system, then go add immunotherapy and you have this kind of individualized in-body vaccine where your immune system then heads out to hunt down and kill whatever cancer antigen proteins are expressed on your cancer cells.
https://med.stanford.edu/news/all-news/2018/01/can...
I am also excited to hear more about the trial you will be entering (tomorrow?!), I haven't read anything about this new formulation for Ibrance! Maybe the trial is not listed on the NCI site as yet!!
Today I was at a grant panel and there was excitement about combining PPAR-gamma agonists, the sort of exercise-in-a-pill drugs, with immunotherapy. The idea is that bad diet and lack of exercise give rise to systemic inflammation, which these drugs fight. Reminds me of the EP4 inhibitors that kattysmith is taking with immunotherapy, they are designed to get rid of the inflammation, which helps the immune cells find and destroy the tumor.
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so you're excited as wellabout that trial at Mt Sinai, Cure-ious! I'm so happy to hear that!
https://medicalxpress.com/news/2019-04-treatment-tumors-cancer-vaccine-factories.html
Question: when they say checkpoint blockade, does it mean that all the pathways the cancer can use to grow are blocked simultaneously
I have a friend that works there, I'll try to find out more about it, and maybe even call them to see if they have slots and if I qualify. Mt Sinai is where I was first diagnosed and treated.
However, I would find leaving MSK stressful. MSK is like a country club in comparison. I never have to wait more than a few minutes and the lounges are very elegant. MSK staff is intelligent, they are trained well. Also, I never have to worry and deal with my insurance company. They fight and get paid, no matter what, no matter how long it takes! So there's comfort in that...At Mt Sinai everything took hours of waiting, they were extremely disorganized, staff was overworked and tended to display an inappropriate attitude.
Tomorrow I'll find out more when I sign the papers, but my next appointment will be at the end of May. When I asked what phase of the trial I would be joining, mo replied 1B, as if too say it's just one phase, since all the other aspects of the drug have been approved already.
Ormaybe, MO decided to wait for the genetic results to see if there are new mutations that can affect the choice of tx. Or it could be simply a washout period....
Will update tomorrow...
Leftfootforward, I'm so happy you're stable! Congratulations on those great results
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I've been reading the titles of the MBC talks for ASCO next week, and noticed they will be updating the VERONICA trial, which I had never heard of. It tests venetoclax, an inhibitor of BCL2, which is upregulated in most MBC cancers, together with faslodex on patients who previously were treated with CDK4,6 inhibitors. Its early days for phase 1b trial, however they say they are seeing benefits and toxicity is mostly just neutrophils- they are likening it to ibrance trials, but I'd like to see some solid PFS numbers before getting too excited about it. Maybe they will have more to say next week, but at least this is a trial that is consistently reporting, they last spoke at San Antonio last December. Venetoclax is used in blood cancers, I think this might be the first solid tumor trial using this drug. The newer trial is with faslodex whereas in the first trial they tested it with tamoxifen.
http://cancerdiscovery.aacrjournals.org/content/9/...
PS However, if this trial has PFS that is equal or better than Alpelisib-Faslodex, I would prefer the venetoclax combo due to fewer side effects. It seems to work on ESR1 and PI3K mutant cancers too. Might become a good secondline option.
PPS This is a phase 2 trial with several US sites (Mayo Clinic, UCSD) as well as multiple sites in Australia, Canada, UK, Germany, France:
https://clinicaltrials.gov/ct2/show/study/NCT03584...
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I just got out of the meeting with my mo and one of the nurses working on the trial. They think I will be acceptable to Pfizer, the sponsor.
Basically, it's a phase 1 where they are working out the dose and the efficacy. The goal? They want to prescribe ibrance as a mono therapy, in a similar fashion as Abemaciclib.
The good news is: no diabetes, ( like I thought) no loss of heart, liver, kidneys or digestive function are expected. Just the usual: fatigue, diarrhea, no immune system, aches and pains, and possibly hair loss, business as usual....
I signed without reading because if I did, I probably would have chickened out...basically Doxil made me do it!
Also, we don't need to wait till the end of the month because a month has already passed from my last capecitabine intake...I will have to give them two weeks of undivided attention, and then it's once @month.
Two months later they will run tests and if I haven't responded it's over!
As you can imagine, I begged my mo to consider my case for immunotherapy, as soon as they have a treatment that works.
He said: my name is up there, but at this time nothing is working!
Glad the weekend is coming...I'll be in the Berkshires with a bunch of fun people, cooking, eating, and laughing!
Good wishes to all
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That sounds like a good trial that could really come up with important news for all of us. My old MO believed I was working alone on me. I hope it works for you. It would be such great news. Wish you didn't have to wait so long to find out.
I wish I didn't have to wait so lone to find out if X is working. She wants to wait for 3 cycles, July, to do PET. I am now feeling super good on it. Lots of energy.💞
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Grannax, I think the monthly bloodwork should be a good indication of how it’s working for you. Glad you’re enjoying it....I could have taken it till the end of my days. I also loved having the week off....
Happy mother’s day to you!
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https://clinicaltrials.gov/ct2/show/NCT03519178
MIao- Your trial (above) is also offered at MD Anderson, UCSF, UCLA, TX, TN- so clearly there is a lot of enthusiasm for this drug. This trial requires 1-2 prior chemos in the metastatic setting, but hopefully future trials make it appropriate for secondline. Really hope the SEs are nothing worse than Ibrance alone!
The drug strongly blocks CDK2, as well as CDK4,6. Increased CDK2 activity (due to elevated levels of its activator, Cyclin E) is the most common way MBCs become resistant to Ibrance. The hope is that Inhibiting CDK2, make the cancer sensitive to Ibrance again- good luck!
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Wow, the more I hear about this trial, the more exciting it sounds. Thanks for being our pioneer Miao and good luck with it!
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Miao, this trial sounds great! I had two really good years on Ibrance/letrozole with no debilitating SEs. I had low WBCs, but they always perked back up on their own after my week off.
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Hi all,
Happy Mother's Day!
Thank you for your messages of support and encouragement, I need them, but please be aware that deep down it's only the fear of starting conventional chemotherapy that's driving my actions....
his weekend, so far, I have been unable to open the folder and actually read what I'm getting into, because I know it would make me want to quit before I even start....so please keep some perspective....
My trial starts this Tuesday, and hopefully I'll be able to follow the advice of Lady McBeth by “screwing my courage to the sticking-place / And not fail you or I"
So let’s all pray that all the people conducting this trial are wise, honest, and know what they’re doing
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This message is for Cure-ious and all the other medically savvy women on this site that have access to medical portals.
It would be very helpful for my peace of mind, if I knew beforehand the results of the mice and dog experiments they conducted using this new and revised ibrance medication— that I'm going to start taking on Friday.
I would want to know things like, overall survival vs untreated creatures population. Percentage of creatures that benefitted vs the ones that died, and—very important—what did they die of. Was cachexia a factor, what major organs were compromised in addition to the digestive system. Are the benefits for real or are the ones that go on for just three months? Like...till the next pet scan....
Thank you in advance for your help. I suspect that what I’m asking for is probably un-accessible, and I’m therefore asking for the impossible. But if I could be aware of some of these facts, I think I would be able to undergo the experiment with more confidence and peace of mind.
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ahhhhh....a piece of advice to people that are severely fatigued—like moi—I learned by reading the latest, excellent guide to MBC, by our indomitable Bestbird, that Korean ginseng, Ritalin, and Provigil, can be safely used to reduce fatigue.
I told my wonderful pain care specialist about the medical research backing those claims today, and she agreed.
So I'm going to get myself some SONA Korean ginseng and I will soon be using Ritalin as well. I'll keep you posted on their effectiveness. I know, I'm going to feel a lot better about the whole cancer thing, if I had more energy!
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Hi Miao,
Nothing has been posted in the scientific literature about the drug you will be trying, so I think all of the information has been done in-house by Pfizer and what is available is probably described in that folder you refuse to open! (but that the rest of us would love to see). Ask them what to expect, what happened to the others who tried the drug- for sure, ask if it has the diarrhea side effect that Abemaciclib has? You want to know that, so you can be prepared with loperamide, but hopefully it doesn't (Abemaciclib is a really different drug). It may well have the immunostimulatory effect of the CDK4,6 inhibitors, potentially even stronger, so that your immune system will take out a bunch more cancer cells as well. Also, because the formulation for this drug is so strong (100 times stronger than Ibrance! Ten times stronger than Abemaciclib! And hits CDK2 even harder!) that you may not need very much to get the maximum benefit, so you should also assess whether you might have even FEWER side effects than Ibrance, for example. And you aren't taking an estrogen inhibitor, so you won't have the arthritis side effects that come with that.
I am more concerned about adding on the dog dewormer meds, altho I think you said you were going to wait to at least see what happens with the new drug first ? Just remember the fenbendazole can be hard on the liver, and nobody knows the side effects that will develop if taken for long periods of time. I sound like Julia Child: "Spare the liver!!!"
I hope this is a winner drug, and we all end up benefitting from it!!
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Is there a name for this new Ibrance-like drug? I'm making a list of what to try next! I just had a month break from abraxane (after doing it for 5 months), and at my appointment today I got another month off!!! Makes me a little nervous but if he thinks it ok I'm going for it. I feel so much better! Anyway, I'm all out of AIs as well as faslodex and Ibrance and xeloda. Ribo was denied by insurance. This drug sounds pretty exciting.
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Miao, Provigil does work well for energy but can be expensive. Wellbutrin works equally as well, maybe better, for a fraction of the price and none of the hassles of insurance denials, appeals, rejections that go along with Provigil used off label. I would recommend going with one of those and trying to avoid Ritalin if possible. More side effects and more addictive, I believe. I don't know specifically about the safety of Korean Ginseng (versus any of the other types of ginseng) but I had always thought that ginseng could stimulate breast cancer growth? I stay away from ginseng for that reason. I have been reading that for years. Maybe it is a different type? I will check out Bestbird's manual on that one. Ginseng has so many other health benefits. If there is a type that is safe for breast cancer, I would be on board.
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HLB- Seven years out- awesome!
If you have had 2 chemos (Xeloda and Abraxane) it should be time to move next to clinical trials, as some have limits of not more than two chemo treatments, for example.
MIao's drug is known only as PF-06873600. Here is the trial:https://clinicaltrials.gov/ct2/show/NCT03519178It's a phase one trial and only been going on for a year..
Other drugs you could take are Alpelisib-Femara (assuming it gets approved soon), but only if your cancer tests positive for PI3K mutation, Alisertib-Femara (clinical trial) and Venetoclax-Femara (clinical trial) ; each of these is designed to make the cancer respond to estrogen again. Also there is kattysmith's Opodivo + EP4 trial, which nobody else has joined yet- but, hey, it's worked well for her- and if you get a response on Immunotherapy it seems that everything else you try later on works better too!
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JFL, couldn't agree more about ritalin, my son took it for some years for ADHD, but its SO addictive and carried a black box warning for heart function, so I was determined to get him off of it before college. Withdrawal was terrible, he literally could not crawl out of bed for a long time, zero energy, but eventually got back to normal and has never been tempted to go back on it.
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Hello Ladies, I'm writing from the UK.
Briefly... bone mets in lots of places diagnosed 4 years ago. I also now have a liver met. I have been turned down for cyberknife to the liver met and also ablation on the grounds that I also have bone mets. They will only do procedures on the liver with a " curative" purpose, that is if I had liver mets ONLY. My oncologist said treating the liver won't extend my life as I already have it to bone. It's not clinically relevant.
I realise I am under the NHS funding which is overstretched.
I read that many ladies in the USA have procedures to the liver ( Y90) for example, even if they have bone mets. Do your oncologists think it's relevant? I feel that mets to bone only is better than having organ involvement, therefore I want to try and get rid of it.
I would appreciate your thoughts.
I do wonder if I was able to pay privately.... I bet they would do it
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JFL, Cure-ious et all...thank you so much for the warnings and offering alternatives to the Ritalin, I guess I will use Wellbutrin. The Korean ginseng is different from the American one which is estrogenic. There was research conducted at the Mayo Clinic that said it was safe.
I started reading my dossier....The study drug IS THOUGHT to work by blocking growth signals in cancer cells, and the goal is to shrink the tumor mass. No mention of stopping stem cells from creating more metastasis, which should be their only goal This study will focus on finding the right dose— which is an oxymoron since we are all different and what works for one patient will kill another...but what do I know?
some of the expected SE are : Diarrhea, vomiting, weight loss, loss of appetite, dehydration.... whaooo, that's exactly the sort of minor inconveniences that cancer patients need in addition to the hell they are already experiencing on a daily base to stay strong. Right?
Thus, I have deducted, that this “medicine" suppresses the immune system located in our bio-dome—which I've been patiently restoring after the devastation caused by the my first intake of ibrance. They believe that this drug MAY benefit people....based on the results on cats and dogs.
Can someone please explain, how reducing our ability to eat, digest, and assimilate food, helps our case or those poor cats and dogs? What about the devastation to our functioning organs? This is nuts!!
Another major worry is what I consider the underlying faulty rational that continues to still plague these studies— regardless of the half million Americans that die from their uselessness every year....which boils down to: let's see how much medication a patient can take before the SE are unbearable. Instead of thinking: let's see how LITTLE medication can produce good results. As we all learn from these boards, more medications don't necessarily correlate with better outcomes, because we're all different, and the contrary is true.
Some wise Greek, thousand of years ago, stated: Measure is all! That statement is considered to be the wisest maxim to live by. I believe, that if they knew what they were doing—and these medications were really effective—they wouldn't have to bombard us with massive doses.
Oh...and among the numerous warnings of what can go wrong, apart from liver, kidney, heart and blood damages that can be permanent.... is dying....
I want to apologize for my negative spin this morning, at times such as this, I feel like a sheep waiting to be taken to the slaughterhouse or one of those frogs that unknowingly dies as they raise the water's temperature....
A lack of viable alternatives, doesn't make these treatments rational. We must insist and fight for a cure, the reason why people are living instead of dying from AIDS is because they fought hard and demanded results.....it seems to me, that we're happy with crumbs!
Thank you for allowing me to honestly vent my concerns and fears this morning. In a few hours I'll see my acupuncturist and as fatigue, aches and pain leave my body, my mood will soar and my distrust will dissolve.
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Miao, I understand. Although I've always been a whistle-past-the-graveyard type, I still always have a constant tape of Rosanne Rosannadanna playing in my head saying, "It's always something."
Have a wonderful healing session with your acupuncturist today.
Katty
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Curious, thanks for that info! I would probably have to travel for any trial that was available. Don't know hoe feasible that is unless I go on disability. This dz is frustrating.
Miaow, I agree with everything you said.
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Miao--- God Bless You. You are a strong woman, as anyone going through a clinical trial, to subject your body to hopefully help yourself and others in the future. My prayers are with you that the new med will be kind to your body and your anxiety is relieved.
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For unknown reasons a visit to my acupuncturist Lac Yu Chen brings out the southern belle in me. Like Blanche DuBois, today I walked in feeling so vulnerable—aching and cold from not being dressed properly—I was definitely looking for and depending on the kindness of strangers, and thank goodness, I did receive it in the form of great relief.
But, when Miss Chen, had a disturbing look on her face while staring at huge box of expensive Korean Red Ginseng I had just purchased, I asked if it was a good idea to take it for energy. She shook her head and said: no good, too much heat....and then I thought about all the money I had spent already, and asked: can I take just a little bit, she answered ....yes, a little bit....okay....
So there you have it, Ritalin is no good at all, ginseng might not be good for MBC.....but a little bit goes a long way...
Kattysmith, HLB, Candy....thank you so much for your understanding....being able to freely express myself and finding support is the best psychotherapy a cancer patient can ask for. You guys get me like no other
Omg! I have enough Korean red ginseng to last me a lifetime.....I can't wait to see what happens, but I'm gonna have to hold off for a while...maybe I'll throw a Ginseng party...
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Hello Ladies, I'm writing from the UK.
Briefly... bone mets in lots of places diagnosed 4 years ago. I also now have a liver met. I have been turned down for cyberknife to the liver met and also ablation on the grounds that I also have bone mets. They will only do procedures on the liver with a " curative" purpose, that is if I had liver mets ONLY. My oncologist said treating the liver won't extend my life as I already have it to bone. It's not clinically relevant.
I realise I am under the NHS funding which is overstretched.
I read that many ladies in the USA have procedures to the liver ( Y90) for example, even if they have bone mets. Do your oncologists think it's relevant? I feel that mets to bone only is better than having organ involvement, therefore I want to try and get rid of it.
I would appreciate your thoughts.
I do wonder if I was able to pay privately.... I bet they would do it
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Hey, Miao, getting excited for you to get on this train already! Don't worry too much about the SEs, as you know they always list absolutely everything that ever has or could happen, and you may not get any of them. One thing we have learned from the Ibrance trials is it seems like the 125mg dose is too high for many people, so don't hesitate to complain about any major side effects! With these compounds being so much more efficient than Ibrance, you probably will be taking much lower dose of the actual drug, and side effects may be limited to those that are direct due to inhibiting the actual enzyme, rather than colatteral damage. But being one of the first to try the drug, you are in a powerful position to communicate to these folks what is (and is not) an acceptable quality of life!!!
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