How are people with liver mets doing?

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  • Christina313
    Christina313 Member Posts: 18
    edited October 2017

    my mom is getting worse by the day. She barely ate today, and she had no strength. We got her out of critical care and now she's at home. Just two weeks ago she was doing ok.

    I am getting her the cbd oil. We don't have much to loose . You ladies should ask your doctor for a drug card. Just to have one in case you need it. Don't wait until its too late. I've read many forums and it has the ability to kill tumors. It does have the ability to kill cancer cells.

    Prayers for everyone.

  • husband11
    husband11 Member Posts: 1,287
    edited October 2017

    Christina, I am very sorry to hear that your mom isn't doing well. I am only bringing this up because it seems you have an open mind towards complementary and alternative medicine. Have you read anything about maitake D extract? It's a medicinal mushroom extract that is proven to enhance the immune system. Best of all, it can be taken along with conventional treatment and doesn't appear to interfere with it. There is a lot of research showing it impacts cancer cells in the test tube and in mice. There is solid research showing it enhances the immune system of human breast cancer patients. There are japanese patient studies that show it helped many cancer patients, from improving quality of life to even some cases of it apparently working against cancer. I've studied it for many years, and there are few contraindications, and the optimal dosage for enhancing the immune system has been scientifically shown in a North American clinical trial to be 6 mg/kg body weight daily. My wife has been on it for years, and it really boosted her neutrophil count before she restarted chemo, so I know it does something positive for her (in that respect at least). Perhaps you might want to read up about it. Not knocking cbd oil, but maitake has a lot more research behind it. And its probably less costly than cbd oil.

    Here's an article showing it works against breast cancer in mice:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC50551...

    Here's a post I made about it with many other articles:

    https://community.breastcancer.org/forum/79/topics...

    Here's a good recent article from 2017:

    https://www.ncbi.nlm.nih.gov/pubmed/27892708

    D-Fraction is protein-bound β-1,6 and β-1,3 glucans (proteoglucan) extracted from the edible and medicinal mushroom Grifola frondosa (Maitake). The antitumoral effect of D-Fractions increasing evidence showed that D-Fraction directly affects the viability of canine and human tumor cells, independent of the immune system. Previously, we have reported that D-Fraction modulates the expression of genes associated with cell proliferation, cell death, migration, invasion, and metastasis in MCF7 human breast cancer cells. Therefore, the purpose of the current study is to investigate if this modulation of gene expression by Maitake D-Fraction really modulates tumor progression. In the present work, we demonstrate for the first time that Maitake D-Fraction is able to act directly on mammary tumor cells, modulating different cellular processes involved in the development and progression of cancer. We demonstrate that D-Fraction decreases cell viability, increases cell adhesion, and reduces the migration and invasion of mammary tumor cells, generating a less aggressive cell behavior. In concordance with these results, we also demonstrate that D-Fraction decreases tumor burden and the number of lung metastases in a murine model of breast cancer.

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited October 2017

    Husband, thank you for your response and the links. I have printed the report. It does make sense that there are two "enemies" and each needs a different shield for protection. I prefer to think of the cancer cells as meadows of wildflowers that have forgotten how to die properly.

    Good info on the Maitake mushroom too.

    Christina - I use the CBD CBDa raw hemp oil, strongest they had. But have not used it consistently and not w the melatonin for relaxation like I planned. I strongly believe in complementary. I need to get down to it in all ways. I hope this works for your mom.

  • zarovka
    zarovka Member Posts: 2,959
    edited October 2017

    Bluebird - you ask a great question. The idea is to move up the chain of stronger treatments with a broader target, assuming the broader the target the greater the side effect so you want to start hitting the narrower target. But that doesn't really play out for the individual. In my case, Ibrance and letrozol was astonishingly effective and wiped out all original metastasis and then a new met appeared which obviously does respond to ibrance. What about the original cancer, which surely is not entirely gone from my system. At this point I almost certainly have the original cancer and this new beast raging simultaneously.

    There are strong arguments for combining treatments generally and in your particular case. The limiting factor in combining treatments is toxicity.

    There are various mushrooms that enhance the immune system. My current go to is 3 grams per day of water extracted turkey tail plus 500 mg of Honokiol. Maitake is important to try and well supported as Husband points out. The great thing about it is that you can see the effect in your blood work. My neurophils andd WBC's are consistently 30-40% higher while taking these mushrooms. Since most cancer treatments are immune suppressing, this is very important to figure out. The key is to get the dose right. It can be quite high.

    >Z<

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited October 2017

    Rock and the hard place Z - I have autoimmune disease where my immune system is attacking my body through lupus, Hashimoto's ai thyroiditis and scleroderma and Sjogrens. So enhancing it seems it would give more power to that beast too. But I do not take immune suppressing drugs either. The chemo is enough I think. Just learning to minimize the flares or alleviate them completely.

    Toxicity of the combo.... That is the question. Asking the DO. Will Xeloda with Ibrance be toxic. If so then could I just take Ibrance high dose for cycle / Xeloda at low dose for a cycle with the hormone targeted therapy all along. But if anyone else knows.

    I have decided to forgo the TACE tx and it's cousin. Through the groin artery into another and another. The body still gets all the chemo too. And less than 50% of patients had no decrease in liver lesion size. And there was no difference in survival time. Per the govt report and more I read yesterday. You know, why can't they just use a needle and inject it into the lesion.

    Cryoablation is a better choice but there are adverse SEs there too. But looking into that more today.

    On alternatives / complementary. In 2012 I used a high quality and perfectly combined mix of black raspberry seed powder w red raspberry seed powder and black cumin seed oil. Also oils of the other two. I had had surgery Nov 2011. Did well enough but by summer I was very sick, cancer quite active and no onc yet, I had been doing very well on my choices but then I felt it flare up. So I found this through my daughter's research. And it was in my book but I always thought it too simple to even consider. Talked to the doctors at the study too. He told me to do this this way and in a week or less I would feel better. And I did. That was late summer. I am terrible at consistency. In early winter of 2013 I felt it happen again, couldn't stand flavours of favourite foods. I found the oncologist that was mine until he left for Alaska this Spring. Edited to add - There was one hilar node and seems some axillary then, cannot recall. That was it. I have no scans from before the raspberry / black cumin seed but my oncologist was impressed. Still he told me I needed help. end edit. The ellagitannins of the powders and oils are what I am going to kick into overdrive now, waiting for more supply. And the hemp oil I get from Europe, and yes that will amp immune but also I hope do a number of cancer and the flares. With added pure Omegas 3s. But I want the allopathic too.

    If I had remember the liver wrapped so far to the right side I would have known there was trouble brewing.


  • Liwi
    Liwi Member Posts: 249
    edited October 2017
    Has anyone taken Reishi mushrooms? I recently consulted with a nuitritionist who works with cancer patients and she recommended them to help with my blood counts but I just read a caution that they could interfere with chemo. When I bought some at the local health food store the owner recommended turkey tail and the maitake information looks interesting. I am taking Ibrance and Faslodex.
  • Dlove72
    Dlove72 Member Posts: 47
    edited October 2017

    Hi guys! Question, I had a less than 1cm liver met back in April - scans in July said it was stable, but I have a small pain under my rib. Is this normal? I’m on xeloda as of now. New scans this Friday. Hoping for the best!

  • zarovka
    zarovka Member Posts: 2,959
    edited October 2017

    my understanding is that you don't feel liver mets until they are quite large. You would see odd bloodwork first, I think. Mine are 2cm and don't feel like anything.

    Most likely scenario is that you have gas and you need to go for a walk. I wouldn't blow it off either. Glad your scan is soon, but odds are the pain is not a met.

    Z

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited October 2017

    An interesting factoid from the interventional radiologist: He showed me a liver tumor on my CT image, and said that the reason I could feel it was that it was on the edge, where there are nerves. At that time I was feeling it because Xeloda was working on it, so I hope that is true for you, too, Dlove.

  • JFL
    JFL Member Posts: 1,373
    edited October 2017
    I have a similar situation to Shetland and have at least one lesion near the surface pressing on a nerve. Even when all my lesions are small (mine go up and down like a yo-yo, depending on whether treatment is working), I can feel sensations (discomfort or pain). Also, I have at least one necrotic lesion which hurts because it is in a constant state of dying. Parts of the tumor continually die because it can’t keep up with its own food needs. I have had large, growing tumors with no pain and small, metabolically inactive tumors that were very painful. I don’t understand all of it sometimes.
  • Almosthere
    Almosthere Member Posts: 177
    edited October 2017

    Your liver only has feeling in the capsule which is the outer lining. So anything that inflamed the whole liver, or a tumor pushing on the capsule will cause pain. My liver biopsy only hurt as the needle went through the capsule but taking samples once inside, couldn’t feel a thing

  • momallthetime
    momallthetime Member Posts: 1,375
    edited October 2017

    Kaay are you doing better? So glad there is so much to look forward with this new tx. Oh those pictures are probably fabulous.

    Z you wrote it so well, I feel like keeping all your posts. Z I absolutely totally agree with you about the pure careless sloppiness in healthcare professionals. We all understand that there are few in between, as in any part of our lives, but being in this mudslide for quite awhile, and experience with parents/in laws, the reality is mind boggling. A simple simple fact, I call for CD to be emailed from the dept of films, that's all they do, anyway, yes I'm advised send an authorization and we will send it out. Fine, after an hr, I'm like I don't want, but let me check to make sure all is in order. Of course my phone # was there also. Anyhow, the sweet ignorant voice, said oh yes we got it, BUT WE need to send to you an authorization and send it back, hmm really??? And it goes on and on.

    Shetland e/t you wrote is so true also. I think there is much truth about why there is such a delay in treatment, particularly in certain societies. Now, how one could explain it in a capitalistic economy I'm not so sure.

    LisaYI cannot even imagine your shock. But at least they are moving fast. Are you having WBR? What kind of surgery are you having?

    Rhonda sorry you joined, but this is a gr8 place. Could I ask whom did you see at DF?

    Cristina it's so frustrating, many many hugs.

    Bluebird, it's quite a feat for you to have these docs look at you as whole person, with the different issues you need to contend.

    So - how does one make the decision - re Y90 or TACE? Last PET/CT obviously showed progression, all over, D's ALP is in the 400's it was never that high, her ALT/AST in 100 somehting, never so high. She was ignored and neglected by the people that swear to do NO harm. I can't even rehash it all, but...

    Last week, right after i sent out the post on the 10th, i got the dreaded phone call, bleeding again, going to the ER. i met her there. This time to the new ER. Another sewer. The thing EVERYONE knows. NOT one person at the place, doctor/nurse/patients they all know it's a disaster, and nothing is done about it. So if Dani was admitted at 2:00AM by her private Onco from the Hospital, there is no going upstairs because a team has to accept her on the floor, (the team that never saw her during her stay), and that team only shows up at 8:00AM - I KID YOU NOT. So one rots in the ER waiting for that horrendous hour, and then i still needed 3 nurses to make sure the paperwork gets done. This with someone bleeding, doctors knowing she has clots.

    Anyway, off to the floor, first they want to treat her conservatively, D kept saying it's not gonna go away just with CBI, gotta cysto. Then i insisted we see a REAL doc, not his residents etc...finally doc came and said oh, yeah, Houston we have a problem. Next day cystocopy and hopefully THIS TIME they took it out. He told us, the reason it was still there because 1st URO prob was worried to take it out w/t knowing the status pre-biopsy. Now that he knows it's b9, then he could take it out. Came home Friday evening, What a nightmare. First off Hemangiomas are rare, even rarer in such young women. And then have this recur it's absurd. I got a friend to get in touch with yet another URO in a different Hospital to look at the report, and maybe he could reassure her she won't have to worry about going out in case this happens suddenly, otherwise she is not making plans to go out.

    While there, new Onco came in, he said - what do you expect from me, i'd like to know, oh she told him - don't drop me like a hot potato. He promised he won't, well we'll see. Turns out he gave Faslodex in the Hospital, and ordered Neratinib. It should arrive tomorrow, took a good few days for Ins to ok it. Xgeva also given already.

    The brain MRI showed progression also, she has numbness in the chin/lips and besides e/t else, protruding in the orbital area. So he had an emergency MRI of the Orbit ordered while we were at the Hospital. Follow up with new Rads doc this week.

    It's really much much longer than this, but I'm drained, we did not sleep for 3 days, continuously, and she could not eat so i did not, her hubby went home to be with the kids, and then my girls went to join them.

    So many times i had to make sure she gets the right care, let's just say the Medical Chief came in and was mystified by some of his people. I have his card now.

    SO - tom - Neratinib/Faslodex(already done), what you ladies could tell would that be enough, Onco thinks so. Actually, i have another opinion from a diff Center and they agree. I really hope so. Y90 was suggested by Onco, the former one did not want even want to consider it. But even what you said Bluebird it seems it has a lot of negative, i wish it could be a simple bullet. She has it in both lobes. Rads simulation will be on the 19th, we still have to see where to, because there are so many areas to be addressed.

    Lalalady thanks so much for the pm's

    Always thinking about all of you. Prayers and hopes.

    About the peritoneal mets - i don't think it always comes with ascites, D has peritoneal and sometimes she has ascites, sometimes not.It would show up on a PET/CT or CT.




  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited October 2017

    Mom - this article is on a commercial site but does pretty well explaining the two choices and summarizing a lot of govt reports I was reading too. For me, it is not my choice though I was excited about the prospect until I started reading. Rest well. You have been through so much.

    eh - edited to add the link brain fart https://www.medicinenet.com/chemo_infusion_and_che...


    Liver pain - my liver hurt so much before the tx last fall. Couldn't bend over, lean to right, it just hurt. But the scan showed a lot of involvement w mild to severe uptake SUV and no sizes mentioned. The Ibrance/Femara changed that. Now liver hurts since there was mixed response to Xeloda (lesions in liver came back two large) and mostly when I have been sitting or when I lay on left side. When I lay on r on liver lesions it doesn't hurt as much. Liver biopsy Friday.

  • hartrish
    hartrish Member Posts: 290
    edited October 2017

    husband: can you tell me where to purchase the Maitake? It is a supplement or prepared from purchasing the mushroom and cooking



  • margaritams
    margaritams Member Posts: 183
    edited October 2017

    momallthetime, I can’t believe the hospital horror show that Dani has been subjected to and that you have also had to deal with. I can’t help at all on the treatment options as I have no experience with any of the treatments they are recommending but just wanted to chime in to say that I’m thinking of Dani and you and hope that things will get better quickly as her new treatmentsgets underway. Hugs and hope, Margi

  • husband11
    husband11 Member Posts: 1,287
    edited October 2017

    My wife buys her maitake d extract from vitacost. They seem to have the best price. She buys Mushroom wisdom 4x extract. With the 4x, its 3.7 mg/drop. They make a standard version as well, but then you have to take 4 times as much. Optimal dosage for boosting the immune system is 5-6 mg/kg of body weight daily, split into two doses. So, if you weigh 55kg, you need 37 drops, twice a day to get 5 mg/kg of body weight. If you can't afford to consume it at that rate, then just follow the instructions on the bottle for a lower dosage. Response is dose dependent, but studies show that if you take too much, it has a negative effect compared to the lower dosage, and may even cause suppression at really high dosages (like 10mg/kg body weight). Don't combine the 6 mg/kg with any other mushroom therapy, as that would exceed the optimal dosage.

    A Japanese clinical study was done with most patients receiving 125 mg extract per day, plus 4 grams of whole mushroom. Some people got amazing results, but that kind of evidence is anecdotal, and therefor not 100% reliable. Interestingly, breast cancer patients got the best results. They graded benefit based on a number of factors, not just cancer regression, so that inflates the figures somewhat.

    https://www.ncbi.nlm.nih.gov/pubmed/12126464

    That's an abstract. I have read the whole paper, and it gives the doses and regimes the patients went on. Typical was 125 mg per day (so, less than half the scientifically tested "optimal dosage" ) plus some whole mushroom power. Whole maitake is cheap. I buy it dried, grind it in a blend tec blender and put a heaping tablespoon in a cup of water and slow boil it in the microwave, to maximize extraction.


  • Wendy3
    Wendy3 Member Posts: 872
    edited October 2017

    The pain I've experienced from my liver mets are kind of like a side ache. Mostly I start to feel really week and nauseous.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited October 2017

    Hey Margi, thanks a lot.

    Bluebird it's just does not seem to be so gr8. I think this Onco really wants to do s/t about this monster. How dangerous is Y90? I remember the convo in this thread, but i do not remember who did it. Hopefully we'll get some answers b4 Thursday. She has some pain also.Thx.

  • Christina313
    Christina313 Member Posts: 18
    edited October 2017

    Thank you very much for the advice. I'm going to look into this for her. So far the cbd oil has definitely helped my moms appetite. She's eating a lot more. They didn't have any issues giving this to her in the hospital.

    Thanks again for the info

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited October 2017

    Mom. I had Y90 in April and May. I really don't know how dangerous it is. I think the Interventional Radiologist looks at each person's case to make an evaluation. I do think he looked at my lab work up to see how my liver numbers, bilirubin,etc looked. There's more info on the local treatment thread.

  • zarovka
    zarovka Member Posts: 2,959
    edited October 2017

    The first sign of trouble in my liver from growing mets is increased sensitivity to lotions, sunscreen and soap. No pain so far despite some 2cm mets. The pain appears to depend on location. But the skin sensitivity is impressive and for me is not dependent on location.

    >Z<

  • Lula73
    Lula73 Member Posts: 705
    edited October 2017

    Hi Ladies- just wondering what your first signs of liver mets were/how they were diagnosed?

    I have not been diagnosed with mets, however there are 2 spots on my liver we are now "watching". They were picked up on a chest CT for Bilateral PE diagnosis. MO ordered PET scan and both lit up. Ordered liver biopsy, but radiologist was only told 1 lesion so he found one right away with ultrasound and biopsied it. After biopsy he says to my DH that it's likely an hemangioma but it was strange that it didn't bleed. MO calls with biopsy results, says nothing to worry about its hemangioma. MO calls back after 5pm about 2 weeks later and says radiologist not satisfied with biopsy results. Orders MRI. MRI report states the spot that was biopsied appears to be a fatty spot (not an hemangioma which would explain why it didn't bleed) and the 2nd spot appear to be hemangioma but should be watched. I asked for another biopsy or just go in and take a look/excise it. MO told me we can't just go in and remove every suspicious mass. I asked why not? It has served me very well in the past and caught another cancer early vs allowing it to grow for another year or so waiting on those wait & see & re-biopsy/image every year. MO's response was to schedule another MRI in Dec. I am scheduled for a laparoscopic assisted hysterectomy in a couple weeks along with my stage 2 recon. Hoping maybe they can just visualize these 2 liver spots and maybe get some pics if possible (don't even know if this can be done/if GYN is willing to do that, but it doesn't hurt to ask while he's in there and all...) This is not my 1st rodeo with the big C - it's my 4th. The last 3 cancers were all in the field of radiation therapy I received to treat the first one (neck to hips). And obviously the liver is in the field of rads too.Any thoughts would also be appreciated.

  • JFL
    JFL Member Posts: 1,373
    edited October 2017

    Lula, many don't have symptoms upon liver mets diagnosis. You may want to confirm if a fatty spot or hemangioma would truly light up on a PET. I don't know the answer, although it seems odd that a fatty spot would light up. I also agree it seems odd that a hemangioma wouldn't bleed. The liver itself bleeds a lot which may explain why they wouldn't simply remove a suspicious spot in the liver. I have heard of partial liver removals but not tumor or suspicious lesion removals from the liver. It sounds like your instincts are correct to question the conflicting reports you have received until you get answers that satisfy you. I hope this all ends up being a false alarm.

    Mom, if you want more info on Y-90 and other similar options before your Thursday appointment, check out the following thread:

    Liver mets: resection, ablation, SBRT, Y-90, anything else?

  • Scwilly
    Scwilly Member Posts: 232
    edited October 2017

    I was dx because I experienced severe side pain (under my right ribcage) coming on suddenly (within a 1./2 hour) leading me to go to bed and then to ER in the morning. I originally thought it was kidney stones, but it turned out to be Liver mets.

    I've sorta continued to have sensation - from discomfort to niggling pain (esp when I breath deep or sneeze) since then (dx end Oct 2016) I do have a small spot on the edge of my liver - and I have often thought maybe its because of the little b$gger. I did have slight increase pain when I actually got a good scan on Ibrance, so I take comfort that pain is not a sign of the spots increaseing - but for them being zapped by the TX I'm having. Any little hope helps.

    Sarah

    (edited typos)

  • micmel
    micmel Member Posts: 10,057
    edited October 2017

    slepeint~ I have just come to learn of your passing on June 12, 2017. I am truly sorry for your family, and want you to know, you will not be forgotten,you're a beautiful person and woman. Smile could light up a room. I just find comfort in knowing you're not going to be worrying about your 8lines of treatment anymore. Now you're an angel. A beautiful lovely angel. I will miss you. ~M~ May your family find peace in remembering your loving caring, and kind ways....forever.💐🌹🌷

    ........ HerLast posting to this thread was in march 2017, been fighting since. They do not call it a war or battle for nothing. And this beautiful lady gave it her all. Life is so fleeting. Sending strength to all. ~M~

  • momallthetime
    momallthetime Member Posts: 1,375
    edited October 2017

    Grannax thanks, i do remember you mentioning it. Did you have many? Both lobes? Did they shrink it or it disappeared?

    Z you know your body well. Dani's is like 3 x 2 etc... gotta get rid of these things asap

    JFL thanks so much for the info, will look into it.

    Lula how about another radiologist opinion?

    Still not satisfied with URO dx, i'm breaking my head trying to figure out what gives, I so wanna help her out not to have to go through Hell again.


  • Grannax2
    Grannax2 Member Posts: 2,387
    edited October 2017

    Mom. Yes I had about eight in both lobes. Yes they showed no uptake on my August PET. I was so pleased with the outcome. I hope it's something the IR can do for Dani. I wish I knew all the criteria but I don't. Let us know what doc says.

    Z Are you saying you got a rash when your mets were growing? Where? On the skin in the liver area? I'm very interested in this skin sensitivity thing. You know I just was in the hospital with cellulitis on my face. They also think I had a skin allergy but that is just a guess. Why would growing liver mets cause skin sensitivity? I'm so glad i can ask you this question, I think my MO would just dismiss any correlation. I guess you'll be coming back home soon from your treatment in Japan. Can't wait to read the whole story. You need to write a book!

  • Lula73
    Lula73 Member Posts: 705
    edited October 2017

    thank you, Ladies, for your replies so far.

    Momallthetime-wonder if I can get the radiologist from the hospital who did the biopsy to look at the MRI images. He obviously thinks something isn't quite right.Hoping they might be able to get some pics when they do the lap assist hysterectomy too.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2017

    Mary lark, thanks for the link and let's all pray...

    Kandy, I'm doing OK. Been having an infusion every two weeks. Skipped one because of my daughters wedding. But started up again yesterday. Will have TM's back soon and probably a scan soon too. It's been over 4 months. Neuropathy in my hands is awful. Sometimes I think the antibiotic Cepro caused some muscle weakness reaction too as this all happened when I did that for a week along with starting the Abraxane. Muscle weakness is a side effect listed on the Website and they say it can be permanent! Will never take that again. Major numbness in my fingers and muscle "tightness" up to my wrists. Still have leg weakness mostly in my upper thighs, so lifting my legs to get into the car or bed is difficult. Still using the cane outside the house as I am paranoid of falling. He lowered the dose yesterday and wants to see significant improvement in walking. Going to try and make the little gym tomorrow. Was hoping for my "steroid high" today but seems the Xgeva caused major joint pain so liquidated on the couch....How are you doing? Have the rad effects kicked the back pain well yet? I think of you every day. have you been able to see Harper?

    Shetland, Retrocath was on Xeloda and having major acid reflux and other GI SE's. Stomach bloating, gurgling too. As soon as she stopped the symptoms let up......

    kaayborg, I'm so sorry the SE's are reading havoc on you but it sounds promising too! Praying for fantastic response....Hope to see the family picture! I wish we had done one before I lost mine. I hated wearing a wig at the wedding and look 15 years older in only 4 months from all the weight loss, hair loss, and stress of course!

    Lisa, What a hellish development, I'm so sorry. praying for you today that surgery went well and you spring back very soon. Write when you can.

    Mom, No words here, the nightmare doesn't seem to cut you any breaks. Prayers and hugs is all i can do.

    Husband, you are one wealth of info and we thank you so much.

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited October 2017

    Micmel - thank you for letting us know about Slepeint. You are so right, some of us slip away and no one notices or not many.

    Liver mets for me were "fatty liver" about 6 mo before called activity w mild to severe SUV uptake, no lesions mentioned. I wondered about the fatty liver call on the PET CT. I am fat. Never has my liver been called fatty in all these years of tx. Then it is fatty? I thought maybe it was from toxicity. But no, it was changes from cancer. Feels like a huge bruise often. And thought it was a pocket of fluid.

    Biopsy Friday. Onc appt not for 11 days.

    My oncologist responded to my plea to remain on Xeloda, no sudden moves as the lymph nodes en mass are what will kill me first if allowed to take off again. I am still on Xeloda. Good, becasue I started it 36 hours before his reply. Too scary to be off.

    ARTIST - This may be the longest shot but I have lupus flares where the joint pain is so unbearable I cry getting out of bed and Hubby has to move my arms and legs when I need to get up and even hold something. I started taking Super Omega-3 EPA/DHA w sesame ligans and olive extract and mainly pure wild fish oil concentrate. It's 2000 mg 2x a day or even a few more caps a day. It helped so much and w lupus flares usually it has to be pain killers and steroids up the kazoo which I cannot take at all.

    LULA - I know infection can light up the SUV uptake, but in the liver, really makes me wonder. I do know biopsies do not always pull out the cancer cells. I just don't know. Push for your life is all I know, they aren't living it, we are. Right care only.

    Z - When the cancer is active in my axillary there is a weird scent about my armpit. And I am sensitive to lotions and natural deodorants that I usually use. Yes, we learn to read our bodies very well. When the cancer has been active I have a wild aversion to butter and coffee half & half and my favourite pancakes at Hilltop that have all these good natural ingredients including flax seed. A lot of stuff I really should not have been having due to the high hormone content. At home I don't, using organic dairy if any at all. And never flaxseed. Though I do eat phytoestrogens, just choosy.

    SCWILLY - I love a good cancer dying off pain. Sometimes it is like lightning and sometimes horrid gnawing. But when I am on a chemo or hormone treatment and that starts it's like BINGO. Unfortunately for me, I had mixed response to Xeloda and the gnawing and bruised pain in liver was cancer growing instead of dying off like the lymph masses were. Now I know to know, but what to do, don't know.

    Two questions that will help me and others.

    1. Is a warm water bottle advisable on the liver where it hurts? Or cool pack? Anyone use a castor oil pack? Could any of these make the cancer happy and grow more than it is?

    2. How long does it take for a liver biopsy to be completed and the dx ready for the oncologist?

    Thanks.