How are people with liver mets doing?

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  • artistatheart
    artistatheart Member Posts: 1,437
    edited January 2018

    Thank you Lynne for the news on Aurora. Seems everything happened very fast for her......

    Malady, So sorry to hear of the latest setback. I think Z is very spot on to say the rads will zap the heck out of that jaw met.

    Lilly, sorry to hear of liver mets. Systemic treatment has worked very well for many.

    Robin, I hope you are feeling better!

    Z, great info on protons vs photons and managing the mask. When I get to needing rads I will push for proton. The mask might be another issue for me. Sounds like anxiety waiting to happen for me.....I can't believe you managed that whole trip alone either. Just getting through those airports is such a workout. I remember flying in to Portland while on high dose Ibrance and GASPING for breath. Luckily they have people mover flat escalators every so often. Hope you are feeling much better and no sternum pain.

    Candy, we all feel insecure among many other emotions, your diagnosis is just newer so still fresh and raw I am sure. I hope as you get new information and treatment you can start feeling a little more relaxed....

    Mom, I just hate hearing that nothing has worked for Dani. You would think with everything out there something would work. I pray of you two all of the time, for some peace and comfort.

    Southern, I also have peritoneal mets and liver. I have rarely had pain in the liver area. Sometimes twinges here and there which I believe is the pressure from ascites radiating elsewhere. Have my scan this Thursday and we'll see whats transpired since starting Xeloda. Not helping the ascites thats for sure. Scanxiety is right!

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited January 2018

    NO1-2NV - just throwing this out there as a possibility. Sounds like Shingles. Did you have chicken pox at any point in your life? I have zero experience with skin mets so hopefully someone who does will chime in.

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited January 2018

    Thanks Lynne for the update on Aurora. Hoping she finds a treatment to knock back those brain mets. Sending her love and support

  • zarovka
    zarovka Member Posts: 2,959
    edited January 2018

    Artist - I had protons to the sternum but photons to my liver, so it depends. My RO, who exceeded my high expectations when I finally met him, says there are problems using protons in large soft tissue organs ... but I strongly recommend that you consult, if possible, with someone with access to a proton beam. The folks who don't have access to proton beams won't know what they can do or have an incentive to recommend them. In certain cases there are major advantages to protons.

    The issue with the mask was choking on my post nasal drip. The second attempt with the drip half controlled and a sedative it was really okay. Coulda done another 20 minutes. I don't want to scare people off of an important treatment. You can do it if you know what you are dealing with. Sharing what I wish I had known...

    I had two separate radiation treatments and injections of two different, new chemos on Friday. I booked a flight home on Saturday morning knowing that all of the treatments, especially zometa, can produce reactions. I figured I would rather be sick and traveling home than sick in a hotel room. And that is pretty much true. It was a calculated risk.

    I have to get used to the idea that I need to ask for wheelchair assistance in the airport when one of these severe treatment reactions is going on. I can't believe it, but that where I am.

    >Z<

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited January 2018

    lillymillie-I had progression of my existing liver mets in November. When I asked my MO about Y90, he said he does not use it for breast cancer. He believes that breast cancer requires systemic treatment. He said it has not been shown to increase overall survival. He does order it for colon cancer mets to liver, because those mets are very contained. I also think he said that he will use it if there is one particularly stubborn met. Still, many gals have had Y90 and it's worked great for them

    I believe that I have read of several who have had very good results with the weekly taxol.

    May the force be with you. MJH

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited January 2018

    Southernsurvivor- In September, I began having a similar feeling in the upper right quadrant under the ribs which became more uncomfortable with passing weeks. My tumor markers were also on the rise. My PET scan did show progression of existing liver mets that I had at diagnosis. However, I have experienced so many weird, traveling pains with MBC that have been completely unrelated to any progression.

    Best to you, MJH


  • momallthetime
    momallthetime Member Posts: 1,375
    edited January 2018

    Artist exactly my thoughts. Everything is bad, everything is scary but I must tell you the moment they say we don't know what to do – that's I think the bottomest. But she is kind of telling IT k you are sticking around but I will too!

    Zar my hubby has back issues, I convinced him to get a wheelchair when he travels, and now it became a thing, it's the best. This is for sure something you don't have to deal with. Good for you. On the upside you get to go to the front of the line. 😉A friend of mine was running late to get to the gate for her flight for her mother's funeral, she is a MD herself, anyway she plopped herself in a wheelchair and voila, her hubby and kids and herself got through security asap, let's just say she made it. It's music to my ears to "hear" you speak so highly of the RO, this guy has no idea what it means coming from you.

    NO1 maybe you go to a dermatologist? How could you wait that long to see your doc? Shingles definitely are painful it's just an unusual place to show up,but…Maybe you could try at least the PCP to see it.

    Lilliem.. it's hard to judge not knowing exactly all the details but that is what I heard as soon as Dani was dx with liver mets, first if there are too few, they won't do it, they do try systemic first, it probably makes some sense, one would think zapping with ablation one or 2 mets would make sense, but I don't think THEY think so. About it being diffuse or not, I am not sure it makes a difference, let's say the Y90 it's done one lobe at a time, so in that particular lobe would not matter if it's one next to the other or not. But it's a good convo to ask under which situation would he recommend the Y90 then you'll know if it's something he's just scared of or what. We together in these threads found that a lot of Oncos are just not familiar with it, and that's one of the reasons they don't recommend. Maybe a visit to a intervention radiologist specialized in this would help the convo.

    MJH I am no expert on Y90, but it irks me that a doc would say it did not prove to prolong survival, IMHO is not just longevity that people are looking for, but QOL while going through this or any Hell. BUT really what an absurd thing to say, it did not prove to prolong….and for sure that are many that do have this treatment, of course if may not work for many, it depends also on how aggressive the C is etc…or how all the numbers look, and many other details, that I could understand, but…

    Southern how are you feeling?

  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    Okay ladies, I am just going to throw this out there. Has anyone gone to a Shaman or a healer? I have a friend that is in Peru right now receiving treatments from a Shaman. He uses different herbs from the Amazon jungle. She showed him my picture, headshot and full body. He says he can help me but I must come soon. Part of me thinks these guys feed on desperate people. Part of me says why wouldn't I try anything and everything and why has this opportunity been shown to me if it's not the Universe telling me to do it. What are your thoughts?

    Z-how are you feeling now? Thanks for the info regarding PET, CT and MRI. Doctors don't tell you that stuff. I do know that when I have a CT, it is done with and without contrast. I had a PET on Nov 2nd and now for whatever reason my insurance is denying this one. Don't they understand that the modality comparison is important? So now I've left 2 messages with the gal that handles insurance at my onc's office.

    Kaayborg-How are you doing?

    Hartish-How are you doing?


  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    Okay ladies, I am just going to throw this out there. Has anyone gone to a Shaman or a healer? I have a friend that is in Peru right now receiving treatments from a Shaman. He uses different herbs from the Amazon jungle. She showed him my picture, headshot and full body. He says he can help me but I must come soon. Part of me thinks these guys feed on desperate people. Part of me says why wouldn't I try anything and everything and why has this opportunity been shown to me if it's not the Universe telling me to do it. What are your thoughts?

    Z-how are you feeling now? Thanks for the info regarding PET, CT and MRI. Doctors don't tell you that stuff. I do know that when I have a CT, it is done with and without contrast. I had a PET on Nov 2nd and now for whatever reason my insurance is denying this one. Don't they understand that the modality comparison is important? So now I've left 2 messages with the gal that handles insurance at my onc's office.

    Kaayborg-How are you doing?

    Hartish-How are you doing?


  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018

    Kaylynne -

    I am not wedded at all to the Standard of Care and experimental in my approach. Also, I have no doubt there are plants in the amazon forest that are active against cancer. However, it's all about odds. Evaluating you based on your picture is nonsense and therefore a red flag. The shaman is a low odds.

    If you want to step outside the box there are better bets based on at least some data. We have limited resources (time, energy, money). Where we put them is the main factor we control. Travel is very hard on us because it takes us out of our healthy routine and wears us down. That would be the greatest "cost", IMO.

    PM if you want me to pitch a couple alternatives that have more data behind them.

    >Z<

  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    Thanks for the response Z. I just needed to hear somebody say it. I'll pm you.


  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    hi Kaylnne. Thanks for asking about me. Waiting for MRI and Chest CT scan on Feb 8th. Hoping for improvement

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 28
    edited January 2018

    Hi folks,

    As I read your posts, I realize that I need to learn an entirely new vocabulary. There are so many treatments and terms that are new to me, and completely different than my last go round with this. I started my chemo last Friday, and it hasn't been too bad. I did have an ER visit on Monday, because I had chest pain, heart palpitations and almost passed out at work. I developed a blood clot the last time I did chemo, so they were concerned it was a pulmonary embolism. Luckily, it was nothing serious and they chalked it up to side effects from the chemo.

    Has anyone tried the Weisenthal Cancer Center to have their personalized chemo plan made? I read in another post to do that straight away, but it sounds like I'd have to have another liver biopsy to get them a sample they can use. Just wondering if it sounds like it's worth the money and the effort. I'm also considering doing a biopsy slide second opinion at MD Anderson. I have to wait until my first 9 weeks of chemo is finished before I can start that process.

    Southernsurvivor: my cancer was not evident by ultrasound or MRI, but was finally diagnosed on biopsy. I had elevated liver enzymes that kept going up and they couldn't figure out why. I never really experienced pain, but as the enzymes increased, I did notice a discomfort in my abdomen. It usually was worse after I ate. Hoping your scan is clear and it's nothing to worry about.

    Kaylynne- the Peru thing sounds interesting, but mostly because I've always wanted to see Machu Picchu. I agree with you that I wish I had plenty of time and money for travel.

    Hartrish- it looks like you are close to me. I'm in Smyrna, so we're practically neighbors. Praying that your scans show improvement.

    Heading back to chemo on Friday and hoping that it's uneventful. It does give me hope that there are so many of you on here who were diagnosed with mets years ago.

    Missy

  • rpoole1962
    rpoole1962 Member Posts: 386
    edited January 2018

    Bluebird, How did your pneumonitis go away without treatment? I read that Prednisone is usually the go to treatment, but my MO gave me 2 antibiotics in case there was something bacterial or viral. My pneumonitis is getting better, but not completely gone. My MO gave me another 5 day supply of Prednisone. I hope this does the trick!! I also got pneumonitis when I was on the AA combo and had a terrible cough and was hoarse. Anyway, I am glad you got through it.

    Artist, I am doing well except for low platelets delaying my treatment! ugh. How are thing going for you?

    Z, Once again I am amazed!!!!

    Robin

  • momallthetime
    momallthetime Member Posts: 1,375
    edited February 2018

    Kaylynne what an interesting question? Hmm how much money does he want from the American

    Winking?

    Is it very steep or it's doable. The thing is these ppl could know a lot about leaves or certain natural stuff that maybe Pharma wants to make $ off, so that's my thinking…. Then you have to add your place to stay and your flight. Can you talk to actual people that had good outcomes from him? Also keep in mind, where is his hut? (sorry but i'm going with the flow here), like is it far away from an urban area? Would you have medical back up if you need one? Can you see something with his name on the internet... And your friend, did she see results? I did see a very interesting show once about a Chinese doc giving and healing people with herbs, again some people really know their plants and as Z said there is something to it, just gotta be really careful not to get duped. Yes, lots of people prey on the desperate people, you know like docs for example....

    Loopy

    georgiabirdg if you want a 2nd opinion could you not send out the original slide you had? Or did i misunderstand you.

    Babs how are you doing?

    Robin i sent you a pm

  • rpoole1962
    rpoole1962 Member Posts: 386
    edited February 2018

    Abraxane postponed due to low platelets!!!!

    Well I didn't get my treatment yesterday because of continued low platelets. It has been 3 weeks straight that platelets have not rebounded. They stand at 33 and they need to be 80 to do abraxane. But I afraid I am going to be back in the same vicious cycle of having a couple of infusions, then stopping due to low platelets, and so forth. Treatment can't work if it's not consistent. I just don't know what to do.

    My Mo put me on Faslodex & Letrozole, so I would at least be on something. I was on this treatment for 9 months until I had progression, so hopes are not to high for this treatment. This treatment doesn't cause low platelets but I really need it to hold the cancer until the platelets have recovered and then some.

    I asked my MO if I should get a bone marrow biopsy and she said not right now. She said all other blood work is great, its just platelets.

    If anyone had any suggestions or what might be holding my platelets back, it will be greatly appreciated.

    Robin

  • EvaGor
    EvaGor Member Posts: 23
    edited February 2018

    Hello ladies, new liver mets girl here! I have one 3 x 4 cm met along with multiple peppercorn sized ones scattered all around my liver discovered by accident since I had absolutely no symptoms: zero pain, zero discomfort, magnificent labs including liver enzymes, no weight loss, nada! Started Kisqali a week ago. Also taking 150 mg (no more!) of milk thistle before bedtime, according to my pharmacist it shouldn't interfere with the Kisqali as long as I stick to the recommended dose. Kisqali can be tough on the liver. Sigh...

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2018

    How frustrating, Robin. I don’t know much about low platelets, but it occurs to me that if your oncologist is not also a board-certified hematologist, you could consult one.

  • rpoole1962
    rpoole1962 Member Posts: 386
    edited February 2018

    Shetland, My MO is also a hematologist, but I think I will seek out a specialist. Thanks for you input. I hope all is good with you!!

    Robin

  • Liwi
    Liwi Member Posts: 249
    edited February 2018
    Kaylynne I was glad to see you put out of the question on alternative healing. I think Z and Momatt made good points on what to look for in evaluating providers. I am open to exploration but cautious as I think some are in it just for the money.

    Just as I was finishing my original treatment in 2015 I met a local,woman who provides weekly classes in Quigong, acupressure, and total Chinese medicine concepts. I’ve been attending her classes pretty regularly for the past couple of years and have continued attending after my metastasis diagnosis last June though I have not let her or any of the other participants know about my metastasis yet.

    One thing I like is that she is not in it for the money as it relates more to her Buddhist philosophy of giving. She provides the classes for free though accepts modest donations for example $5 a class and $25 for an accupressure massage session. I’ve come to believe that the practices are at a minimum beneficial in managing and minimizing side effects and I had one unusual experience where shortly after completing Quigong liver movements followed be meditation where I physically felt like a blockage was leaving my body and that was shortly before my last scans that showed like tumors had shrunk.

    I’m not yet ready to forgo standard of care treatment but if I get to the point where the only available treatment looks like it would create a horrible quality of life I would very seriously considering going fully into the total Chinese medicine approach which would require a lot more discipline particularly in diet than I’m ready to do at this time. For now I use the Quigong exercise and meditation techniques and am trying to incorporate some of the diet recommendations. After my next scans in March I will let my teacher know what is going on with my cancer and see if she can work with me a bit more to strengthen my chi and immune system.

    Feel free to PM me if you want any more information.
  • kaylynne
    kaylynne Member Posts: 143
    edited February 2018

    Z, Liwi, & Momall: The Shaman wants $160 daily for 3 weeks. After calculating all the cost, it would be over $10,000 because there's no way in hell I would go alone. It was something presented to me by a very loving friend who is there now. She was diagnosed stage one a year ago, had a lumpectomy and radiation and is now cancer free. She is also an osteopath bodyworker (not a DO) but her DO that she trained with recommended this shaman and says he has a 60% success rate. She went to clear other things in her body. She's 50 years old, slim, a runner, a yogi, eats mostly vegetarian diet,and is beautiful inside and out. I think the altitude there alone will generate new red blood cells and she will feel fantastic. I pray that it all works for her and am happy that she has had this opportunity and believes in it. I, on the other hand, am 54 years old and a little fluffy. When I was first diagnosed in April with stage 3, I watched The C Word documentary which led me to the book AntiCancer, A New Way of LIfe. I began adapting the principals and eating according to the book. In July, I was diagnosed stage 4. I continued to watch my diet and added walking, almost every day, to my schedule. The only other exercise I enjoy is yoga. When taxol failed, I was off treatment for 5 weeks waiting for a trial. During that period, my tumor count went from the original 2 in my liver to multiple (I counted 7 on the CT scan) with the largest being 7cm. I hit a low point. I began letting some foods back into my diet that I had eliminated (flaming hot cheetos was one) and used the weather as an excuse to stop walking. Since being on gem/carbo, I've gained 7 pounds, and my body is swollen in different spots on my left side. I guess what I am saying is that I now know diet and exercise play an important role in my overall health and reduce side effects from chemo. I am pledging to get back on track but not to the point that I feel guilty for eating a cookie or two. I gave up wine for pete's sake. I did this because I could feel the difference in my liver after drinking. Reality...there is no quick easy answer and no cure right now. I just gotta keep on doing my best and forgive myself when I screw up. It is what it is and I do have so much to be grateful for in my life.

    Kay

  • lucia42
    lucia42 Member Posts: 45
    edited February 2018

    I know we're not mice but still .... !


    Cancer 'vaccine' eliminates tumors in mice

    Activating T cells in tumors eliminated even distant metastases in mice, Stanford researchers found. Lymphoma patients are being recruited to test the technique in a clinical trial.

    JAN 312018

    Man in a lab coat in the foreground with a woman in the background working on a computer

    Ronald Levy (left) and Idit Sagiv-Barfi led the work on a possible cancer treatment that involves injecting two immune-stimulating agents directly into solid tumors.
    Steve Fisch

    Injecting minute amounts of two immune-stimulating agents directly into solid tumors in mice can eliminate all traces of cancer in the animals, including distant, untreated metastases, according to a study by researchers at the Stanford University School of Medicine.

    The approach works for many different types of cancers, including those that arise spontaneously, the study found.

    The researchers believe the local application of very small amounts of the agents could serve as a rapid and relatively inexpensive cancer therapy that is unlikely to cause the adverse side effects often seen with bodywide immune stimulation.

    "When we use these two agents together, we see the elimination of tumors all over the body," said Ronald Levy, MD, professor of oncology. "This approach bypasses the need to identify tumor-specific immune targets and doesn't require wholesale activation of the immune system or customization of a patient's immune cells."

    One agent is currently already approved for use in humans; the other has been tested for human use in several unrelated clinical trials. A clinical trial was launched in January to test the effect of the treatment in patients with lymphoma.

    Levy, who holds the Robert K. and Helen K. Summy Professorship in the School of Medicine, is the senior author of the study, which was published Jan. 31 in Science Translational Medicine. Instructor of medicine Idit Sagiv-Barfi, PhD, is the lead author.

    'Amazing, bodywide effects'

    Levy is a pioneer in the field of cancer immunotherapy, in which researchers try to harness the immune system to combat cancer. Research in his laboratory led to the development of rituximab, one of the first monoclonal antibodies approved for use as an anticancer treatment in humans.

    Some immunotherapy approaches rely on stimulating the immune system throughout the body. Others target naturally occurring checkpoints that limit the anti-cancer activity of immune cells. Still others, like the CAR T-cell therapy recently approved to treat some types of leukemia and lymphomas, require a patient's immune cells to be removed from the body and genetically engineered to attack the tumor cells. Many of these approaches have been successful, but they each have downsides — from difficult-to-handle side effects to high-cost and lengthy preparation or treatment times.

    "All of these immunotherapy advances are changing medical practice," Levy said. "Our approach uses a one-time application of very small amounts of two agents to stimulate the immune cells only within the tumor itself. In the mice, we saw amazing, bodywide effects, including the elimination of tumors all over the animal."

    Cancers often exist in a strange kind of limbo with regard to the immune system. Immune cells like T cells recognize the abnormal proteins often present on cancer cells and infiltrate to attack the tumor. However, as the tumor grows, it often devises ways to suppress the activity of the T cells.

    Levy's method works to reactivate the cancer-specific T cells by injecting microgram amounts of two agents directly into the tumor site. (A microgram is one-millionth of a gram). One, a short stretch of DNA called a CpG oligonucleotide, works with other nearby immune cells to amplify the expression of an activating receptor called OX40 on the surface of the T cells. The other, an antibody that binds to OX40, activates the T cells to lead the charge against the cancer cells. Because the two agents are injected directly into the tumor, only T cells that have infiltrated it are activated. In effect, these T cells are "prescreened" by the body to recognize only cancer-specific proteins.

    Cancer-destroying rangers

    Some of these tumor-specific, activated T cells then leave the original tumor to find and destroy other identical tumors throughout the body.

    The approach worked startlingly well in laboratory mice with transplanted mouse lymphoma tumors in two sites on their bodies. Injecting one tumor site with the two agents caused the regression not just of the treated tumor, but also of the second, untreated tumor. In this way, 87 of 90 mice were cured of the cancer. Although the cancer recurred in three of the mice, the tumors again regressed after a second treatment. The researchers saw similar results in mice bearing breast, colon and melanoma tumors.

    I don't think there's a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system.

    Mice genetically engineered to spontaneously develop breast cancers in all 10 of their mammary pads also responded to the treatment. Treating the first tumor that arose often prevented the occurrence of future tumors and significantly increased the animals' life span, the researchers found.

    Finally, Sagiv-Barfi explored the specificity of the T cells by transplanting two types of tumors into the mice. She transplanted the same lymphoma cancer cells in two locations, and she transplanted a colon cancer cell line in a third location. Treatment of one of the lymphoma sites caused the regression of both lymphoma tumors but did not affect the growth of the colon cancer cells.

    "This is a very targeted approach," Levy said. "Only the tumor that shares the protein targets displayed by the treated site is affected. We're attacking specific targets without having to identify exactly what proteins the T cells are recognizing."

    The current clinical trial is expected to recruit about 15 patients with low-grade lymphoma. If successful, Levy believes the treatment could be useful for many tumor types. He envisions a future in which clinicians inject the two agents into solid tumors in humans prior to surgical removal of the cancer as a way to prevent recurrence due to unidentified metastases or lingering cancer cells, or even to head off the development of future tumors that arise due to genetic mutations like BRCA1 and 2.

    "I don't think there's a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system," Levy said.

    The work is an example of Stanford Medicine's focus on precision health, the goal of which is to anticipate and prevent disease in the healthy and precisely diagnose and treat disease in the ill.

    The study's other Stanford co-authors are senior research assistant and lab manager Debra Czerwinski; professor of medicine Shoshana Levy, PhD; postdoctoral scholar Israt Alam, PhD; graduate student Aaron Mayer; and professor of radiology Sanjiv Gambhir, MD, PhD.

    Levy is a member of the Stanford Cancer Institute and Stanford Bio-X.

    Gambhir is the founder and equity holder in CellSight Inc., which develops and translates multimodality strategies to image cell trafficking and transplantation.

    The research was supported by the National Institutes of Health (grant CA188005), the Leukemia and Lymphoma Society, the Boaz and Varda Dotan Foundation and the Phil N. Allen Foundation.

    Stanford's Department of Medicine also supported the work.

  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018

    Liwi - thanks. There are solid alternative practitioners close to home. Since none of these things really work as a quick fix, proximity is important. I am very concerned about spending a lot of money and traveling because both of these things increase stress. The foundation of healing is diet, exercise and lowering stress. If you can add some spiritual and herbal support great. But you won't get well without the foundation of diet, exercise and low stress.

    Lucia - Thank you for bringing that to my attention. It's a cool article.That whole line of research is further along than the mouse model test would indicate. Note that both agents have been tested, independently, in humans and one, I believe, is FDA approved. However, for MBC there is the problem.

    "I don't think there's a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system," Levy said.

    T-cells generally don't recognize MBC cells. MBC tumors mostly don't have T-cells sitting in them. Most immunotherapies, including this one, are trying to activate the adaptive immune response; however, MBC and particularly ERPR+ MBC is often invisible to the adaptive immune system. (TNBC develops differently that ERPR+ MBC and has a totally different interaction with the immune system. You guys should be on the edge of your seats .... )

    For this reason most people write off MBC as a target for immunotherapy. IMO, there is just a different set of challenges but progress with ERPR+ MBC will move more slowly.

    >Z<

  • lisajo6
    lisajo6 Member Posts: 155
    edited February 2018

    I had my first abraxane infusion today. three weeks on-one week off with herceptin. I did not ask to see my pet scan. He said my liver was functioning and not full of cancer-but what spots I did have were growing. He said there were more options. I am a bit calmer-but sad my growing hair and eyelashes will be gone again. I will take life.

  • lucia42
    lucia42 Member Posts: 45
    edited February 2018

    Z, I see. I guess I need to do some homework :)

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited February 2018

    Robin- Grrrr.... those silly platelets. Hematologist is what came to mind-couldn't MO call one of her peers and ask them about advice on getting your platelets up? Am I deluded? Save wear and tear on you. You must be beyond frustrated.

    Kaylynne-I was trained as a lab technologist very traditionally. I clearly understand that many alternative treatments are available, and totally effective and proven. I would approach other things with a super healthy skepticism, see if there's any science behind them. To be in an amazing setting, and to believe one is moving toward wellness is certainly no small thing, however.

    Lucia-amazing article which reminds of us of the incredible advances being made in treating cancer. Thanks! There is a "vaccine" in clinical trial for Triple Negative BC at Mayo. Think it just started recently and the drug has a long complicated name.

    Mom-Admittedly, my MO's answer to my question was not what I expected. He is a kind man, very academic, and a straight shooter, no ego. So maybe he just hasn't caught up on the latest with Y90? Not sure. I am not at a juncture where that would be required. I'm pretty confident that if I insisted, he would refer me to an IR. How is Dani?

    lisa-hope all goes as well as possible with the Abraxane. The hair issue is just so tough.

    EvaGor-welcome to liver mets land, where no one ever wants to be. It's like some kind of twisted amusement park. BUT, the folks here are just so fantastic and knowledgable, and honest, and helpful......

    hi to all of you, may the force be with you, MJH


  • artistatheart
    artistatheart Member Posts: 1,437
    edited February 2018

    Z, thanks for the clarification on Proton/photon. I will ask a lot of questions when the time comes.

    Robin, I had scans today and probably results Monday or Tuesday. Hope the Xelodais helping my liver but worry about the ascites becoming more active. I am going in once a week now for para procedure as two weeks made me miserable 3 or 4 days before I got in. I don't know about getting those platelets up but know it's scary and frustrating to wait on treatment. Hope the old meds hold off any progression until you get back on track.

    Lucia, thanks for the article and Z for filling us in on the drawbacks so far. Any new news is good but I think we all wait for the one big magic bullet specifically helpful for MBC.

  • Liwi
    Liwi Member Posts: 249
    edited February 2018
    Kaylynne it sounds like you are focused on doing all the right things in terms of diet and exercise. I’m wouldn’t stress about the occasional lapse or cookie. For me trying to follow any program perfectly would create a lot of stress which is also not good. It sounds like your friend is having a great and health enhancing experience.

    I’ve not exercised regularly other than doing a Quigong routine for a couple of years partly because every time I started something (even yoga) I would injure or aggravate something like my knees, shoulder, ankle etc. and stop. A few months ago I found a Pilates studio that uses the reformer equipment and has instructors trained in working with people with health issues like mine including cancer, arthritis, oteoperosis, neck and shoulder problems so I gave it a try and it’s been great. They are careful in what they have me do in terms of resistance and repetitions, also watch my form to limit potential injury. The sessions go fast, I don’t get bored and I feel like my muscles are getting slowly stronger. So I’ve become a fan and definitely recommend this type of Pilates for anyone looking for an exercise method.

    Lucia thanks for posting the article and Z thanks for clarifying how it relates to MBC. Even if it doesn’t apply right now all advances are exciting to see.

    Artist I am wishing the best for your scan results.
  • JFL
    JFL Member Posts: 1,373
    edited February 2018

    Lisa, I hope your first Abraxane went well. I am at about 5.5 months on it now.

    MJH, "twisted amusement park" here?! That is so true and so funny!

    Artist, fingers crossed for positive news in your scan results.

    Robin, hoping a hematologist can straighten out your unruly platelets.

  • Kaption
    Kaption Member Posts: 2,934
    edited February 2018

    Artist- thinking of you! My PET/CT is this afternoon.

    Hugs to all.