How are people with liver mets doing?
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Sharmal, I'm sorry your mom is feeling so bad. I hope the onc will have an effective plan for treatment.
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Sharmal - have you reported these symptoms to her onc? The bloated stomach could be ascites that would need to be drained. Shortness of breath to the extent you described could be pleural effusions. Check in with her onc
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I just reread your post Sharmal an see that your mom is meeting with onc today so that is good news. Good luck with relieving her condition
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MuddlingThrough : Thank you so much for your wishes. We all are on a mission here. All power to you.
AnimalCrackers: Thank you for your kind words. We had onc visit today in night and it is quite late here in India. Since, liver biopsy result came ER (>95% positive) and PR (5% positive). The onc has suggested Faslodex (500mg) injection along with Zoldonet (zoldronic acid).
I had discussed the issues which my mom is facing. About bloated stomach, he said it is due to gas/constipation as there is no fluid accumulation visible in abdominal ultrasound. Although there is mild pleural effusion in left side but he did not find it so much concerning.
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Sharmal - so glad the bloat your mom was presenting was just constipation. I know there were times I looked 6 months pregnant when constipated and miserable.
I’m surprised the onc wasn’t more concerned about the shortness of breath and mild pleural effusion. He didn’t recommend draining it? I don’t know much about it so maybe there needs to be a certain amount of fluid but I wonder if it could lead to pneumonia if not addressed. Just some thoughts. Don’t mean to worry you.
I hope your mom is feeling better and getting some good rest.
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AnimalCrackers: My mom does not know all the details of the treatments like you ladies are aware here. But as a family, we are keeping eyes on every treatment, medicine n symptoms. The ONC did not recommend draining of fluid of pleural effusion. He has given some medicine (oral medicine) for shortness of breath. Although we are not ignoring it, if it is required we will take the second opinion.
I hope that this faslodex will have some good result. Thank you so much for your help.
Prayers and hope for everyone.
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Haven't posted in a long while. Its been 4 1/2 years of bliss...until June 1. My CA 27-29 came back at 40, they have always been above 30, but this scared the daylights out of me. My MO ordered CT scan and/pelvis/chest, done on June 8, results on June 11. "small 1 mm nodule right posterior liver, low attenuation, follow up scans to rule out mets" and 4 nodules on lungs, all less than 4 mm. I have a bone scan Friday. All labs are normal (bili, calcium, alt, all phos). Scared to death. Trip negative is a beast...anyone have any insight to talk me down?
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Sharmel. Does your mom have a PCP? She could go to her and tell her about SO B. I'm sure she will order at least a Chest xray. Sort of a second opinion, but a lot less trouble that seeing a new MO. I do that all the time. My PCP had known me 20 years, she's an internist and very smart. I trust her a lot .
Tumor. I'm not TN but I have had lung and liver mets. It makes me nervous for you to wait 4 months, I would be a basket case. Ask about Liver BX, maybe it's small but could still be accessed by needle CT guided BX. Lung BX is more risky, I would not do that. Ok, so I didn't talk you down, and I'm not a doc, just another MBC lady who understands. I do not like unnecessary waiting and wondering for anyone.
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tumormamedcyde, I was in the similar situation in Dec. I have undergone one chemo regime and am now on a clinical trial with immunotherapy and chemo. It is very scarry. Trip neg is scarry, but you have a better chance of responding to immunotherapy. Private msg me if you would like.
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Tumornamedclyde - you named your tumor Clyde?
I am not TN but my experience with liver mets is that one appeared while I was on ibrance/letrozole but it was only 7mm which was deemed indeterminant and too small for biopsy. So yours is 7 times smaller than mine was initially. It is VERY tiny and may not even be a met. So don’t be jumping off any cliffs. We watched mine for a few months and it eventually grew to 1.3 cm (which is still small) that was more conclusive and the biopsy confirmed metastasis. I changed treatment at that point (clinical trials) and have been stable since. I have a few small nodules in my lungs but they are stable and I’ve had them before cancer.
I was scared too when I went from bone only to liver mets. But it turned out not so bad. I’m not in pain from it and treatment so far is keeping me stable. I’m not sure how much being TN affects treatment for you but a 1 mm spot on your liver may turn out to be a nothing burger. Try not to think the worst. ((Hugs
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Tumor. I re read your post and saw that the liver nodule is only one mm. I doubt if anyone could BX something that tiny. So, I need to revise my concern, I think waiting and re scanning is the only option available for you. Even if it doubled each month, it would still be small. Fortunately, even really large tumors are treatable. Lots of options available these days. I had y90 radioemblization on mine, my recent PET show no uptake a year post y90. Excellent response.
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Grannax2, One year post Y90, no uptake , music to my ears. Wonderful news, I'm going in Tuesday for left lobe. I've dropped about 15+ lbs ; not very hungry, weight should stabilize soon, I hope.
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I had a colonoscopy last week and turns out that I had 3 polyps with breast cancers. Has anyone else had this?
The polyps were removed and she described them as small but didn’t upload the report to the system so I can’t see it for myself. I have lobular which I’ve heard will sometimes metastasize to the G.I. tract. Lobular is also difficult to see, so there could be more that is undetected. I’ve had several MRIs with contrast of my abdomen and pelvis over the past year and these mets have not shown up on those scans.
On the other hand, my recent liver MRI came back greatwith more shrinkage and mets barely visible at this point. However it did note that I have stones or possibly polyps in my gallbladder, something I don’t recall from any prior reports though I need to check. I’ve been having a lot of gastro symptoms, constipation gas gastritis, etc. lately and wondering if they may be related to either of these new findings.
The gastroenterologist called my oncologist yesterday and I haven’t heard from her yet. I’m thinking it’s likely that the cancer is been in in the colon all along, just wasn’t able to be detected on scans. Anyway that’s what I’m choosing to believe for now, that the I/F treatment is working systemically and this is not indicative of any type of progression. I was a bit concerned because my tumor markers went up a bit but that blood test was done within a week of the scan with the good results, also the day after my colonoscopy which between prep and procedure maybe impacted the results. My potassium on that test was also low for the first time ever
If anyone has any insights on breast cancer in the colon I’d be interested in hearing about your experience and knowledge.
Best wishes to all.
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Liwi - No experience with polyps but I would interpret them as old news and not new growth. I believe your medical team will as well. Scans miss a lot of things.
>Z<
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Hey,
I continue to follow along here but I’m mostly active on FB. I’ve been following Nina27’s support page and sadly she died today. She was my age (33) and only battled the beast for a little over two years.
DS8201 continues to shrink my liver lesions but I have a hard time accepting good news because it can all change in an instant.
I love and admire you all. I just dont have the energy for long posts
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Badatusernames, thank for the update about Nina. So sad to hear but appreciate being aware of the news. Way too young and way too short a run with Stage 4.
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Thanks Z, I I thought the same thing, polyps have probably grown over time this is not anything new. But is helpful to have confirmation from your perspective and knowledge.0
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CT scan results of liver is stable. No new tumors and what is there hadn’t grown or shrunk. Clearly kadcyla was better for shrinking my mets, but Xeloda and Tykerb seem to be keeping me stable. I’ll taje what I get even if it was t what I had hoped.
Feeling a little relief but still waiting for the shoe to drop.
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So sad for Nina and her family. Thirty three, did she have children? Badatusernames thank for checking in.💞
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So...I have just received a message from Bluebird's (Diane) niece Shannonand maybe others here have too. She has given me her email and also Diane's DH contact info. Please PM me and I will forward to you. She said Diane passed away peacefully on May 22nd surrounded by family and friends just as she wanted. So sad for my friend Diane. I did receive the news at the time while on a trip. I think her niece would really appreciate all of our responses. Thanks.
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I hate this disease!
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How to even address such sadness. Bluebird, you were such a dear friend. She tried so hard. Nasty medical world ignored her for too long also. But so happy for you that you had your family with you. Thank you for all your help.
Nina gosh, this was Dani's age. Such tender age, so many dreams. I have no words, she was just telling us how she thought it was gonna settle for a while, dear girl, and yes she left a baby. So so sorry.
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Gracie at least they got that going.
Z i saw this and thought of you right away - Dr Seyfried....
One thing i definitely agree with him, doctors don't have a clue of what they are doing. Guessing game all the way.
Leftfoot so happy for you. Now you could take a deep breath.
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thank you Mom for posting that interesting interview with MD Seyfried regarding the maetabolic nature of cancer. I agree that cutting simple sugars and carbs would be of benefit in the management of cancer and that this theory is better than the genetic approach with its useless poisons, but it can't possibly be the solution because it's unsustainable.
We know from Z's experience that it works because Z is still in great physical shape and can afford to loose the calories without major nutritional collapse. But how many cancer patients are strong enough and physically capable of willing to undergo starvation for four days to weeks at the time. It's an immense sacrifice if we accept the fact that sooner or later we will need to eat regularly, therefore refeeding the cancer.
Ultimately isn't malnutrition and infections what kills the cancer patient, and not cancer per se, as cancer needs us to remain alive for it to survive
In my humble opinion, this is a step in the right direction, but not a definitive solution, because similarly to chemotherapy is unsustainable and it doesn't kill the cancer it just starves it, and we know that cancer keeps on mutating into something more formidable and more systemic as the various therapies fail.
The solution is Immunotherapy. Making our immune system strong again. Restore what we lost, what went wrong in the first place by eating a proper diet, detoxing, and taking medications that deal with the real nature of cancer, which is still TBD.
Like you, I too believe that MO don't really know what they're doing. I'm having an interesting time right now asking questions to my new MO that denies even some basic well known facts about cancer. I haven't decided yet if he lies to protect me, or if he's in denial and that dissociated from reality. He runs clinical trials, and could therefore have his head so far up his &$#%% that he’s forgotten the basics
So may God help us, them, and the researchers as we all wade aind try to shed light in the midst of so much ignorance.
May we all live long enough to see some real breakthroughs.
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Z, did you get to do your mri? Hoping your liver looks much much better
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So sad to hear about Bluebird. This liver mets thread seems to have a lots of bad news. My MO says liver mets are one of the main killers. Why can't they focus on liver mets. Local treatment, I had y90, does seem to have good results. But, who knows when it will come back to full force again? No one!!! There are not enough of us tot get good stats. It too is a guessing game. Sometimes it just gets to me, then I think oh my goodness, I'm still alive 18months after a horrible DX. But, I want that for all of us!
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This disease is just plain evil. I am sick about the loss of Nina and Diane. No words.
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interesting topic. I can tell you I have eaten mostly vegetarian with fish and eggs, for many years. I have not lost a pound, and sometimes gained weight. I switched and now trying to do more like keto, avoiding grains, all starches, only berries, and I have lost almost 10 lbs in 3 weeks. I will look into the glutamine and ask my nutritionist about it as well.
Sad that we have lost another fighter, and so young.
Waiting anxiously for results of liver biopsy and confirmation or denial of pseudo cirrhosis....
Keep on celebrating life.
Therese
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I am torn re: keto diets. The evidence appears so convincing (I watched the video Mom attached and then Googled it further), only to then read another article in the Google search regarding certain cancers fueled more aggressively by ketones than by sugar). Miao, I get what you are saying - that what kills the cancer cells (starvation) also kills us. It is a crap shoot of non-ideal choices - starve the cancer with no sugar/carbs or eat balanced diet and benefit from antioxidants and fruits and veggies, which may help slow or kill the cancer and boost immune system. I have taken the latter approach but have been so riddled with guilt about consuming sugar (mostly from fruits) lately that I am pretty freaked out about all of it. It is awful.
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JFL- I too still enjoy eating fruits, but I try to restrict myself to low-glycemic one's like green apples, or unripened kiwis and berries as I also have an insulin problem
Dr. Robert Lustig's claimsthat fructose is a toxin, which is in part responsible for the obesity and cancer epidemic we are facing. A sugary diet can drive fungal infections.
Most fruit has antifungal vitamins, like vitamin C, and is loaded with fiber that counteracts the negative effects of sugar. Humans are supposed to eat fruit we are not supposed to extract fructose from fibrous plants or refine flour into a cocaine-like substance, except too much sugar is not appropriate when our bodies have been invaded by sugar loving fiends.. the real problem in my view is that99% of processed foods have added sugar,
I've been experimenting lately with the introduction of antifungals as an adjunct therapy to xeloda. I'm basically ingesting liquified raw garlic with my salad dressing, adding drops of grape seeds extract and ground flax seed to my drinks, or adding coconut oil which contains caprylic acid and taking various probiotics at other times, since I discovered that afloxins are common contaminants of our food supply, and guess what they give mice when they want to induce cancer? Aflotoxins!!! You can't make this stuff up.
And what do all the alternative cancer treatments throughout history, I've discovered have in common? They unknowingly made use of various powerful antifungals like curcumin. From the MSK website: Curcumin: To prevent cancer. Several animal studies suggest that turmeric prevents colon, stomach, and skin cancers in rats exposed to carcinogens.
A Brazilian research team investigating the efficacy of Curcumin against 23 strains of fungi found that Curcumin was able to completely inhibit the growth of Candida albicans, as well as a number of other fungal strains. The researchers also tested Curcumin using human cells, and found Curcumin was able to stop Candida from adhering to the human cells. In fact, they found that Curcumin was even more potent than the commercial antifungal drug fluconazole. (Rarely prescribed as it damages the liver)
Another study examined the effect of ascorbic acid on the antifungal properties of Curcumin. Although ascorbic acid has no significant antifungal properties of its own, researchers found that using it alongside Curcumin actually made the Curcumin more effective. Even more remarkable was that the Curcumin was 5-10 times more effective against Candida albicans when it was used in the presence of ascorbic acid! This suggests that certain vitamin C supplements may help to make curcumin even more effective against Candida.
When I asked my MO if it was okay to pursue an antifungal diet while on Xeloda, he said to not overdo it and to not take any Curcumin....interesting don't you think? why would he tell me to not take it, if as they claim, natural supplements are useless and it doesn’t interfere with the capecitabine?
https://www.cancer.gov/about-cancer/causes-prevention/risk/substances/aflatoxins
Fungi are formidable and hard to destroy adversaries when they systemically invade the human body and put down roots. Like cancer they love to feast on sugars and likewise mutate, spread, and fight back when under attack.....hummm.....
CelebrateLife, may you get good results!
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