How are people with liver mets doing?
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hi coni,
My experience wasn't so great. Nausea, extreme fatigue and the cancer progressed while I was on it. It was my third chemo so it's not a surprise that I progressed. I've since stop treatment.
Patti
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Yes indeed, momall, I will be asking about local treatment if there is just one spot that is on the liver.
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Hello Shetland, Satti, Mom and her Dani, Shelby, Steffanie, Gina and Pauline, (my apologies to anyone I am forgetting)
I rarely post but check in frequently and try to keep up with your posts. I just wanted to say that my love goes out to all who are experiencing difficulties and all who have provided such wise and experienced words of support!
xxoo
Lisa
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Coni, I can offer hope for a good run with gem/carbo. I've done very well on it for over a year. Still shrinking cancer and I'm living my life about as normal as it can get. No hair loss is nice. I have some fatigue a few days after treatment but still work each day. It is rough on blood counts so I do neupogen and neulasta to boost whites. When platelets are low I have to delay treatments. Eventually we dropped the gem due to count problems but carbo alone still does the trick for me. Hoping your mom experiences the same. It should be better for her hands/feet. I had trouble with taxol but gem/carbo does not affect me at all.
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Hi Ladies, I will be joining this group since my scan on Monday showed a tumor in my liver the size of a nickel. Has anyone done cyber knife to remove a liver tumor? Are there any supplements I should be taking to improve liver function? Any help would be greatly appreciated.
Thanks,
Robin
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hi my friends and do mean that MY FRIENDS,
I've had more support from you than I've had from my own family. And on that note, I made the very difficult decision to eliminate my sister from my life. Last night was another big fight over the Halloween bins.... how stupid right? The shared Halloween bins we have both been contributing costumes to for years and have been stored away in my shed. She wanted to bring them back, I asked her to just keep them since she was probably gonna get'em within a few years anyway, she should just keep them. She said no and demanded she bring them and leave them putside for me (all whilst calling me a bitch and selfish and all kinds of bad names). Unreal. I'm in incredible pain with 2 new compression fractures in L2 and L3 and she has plans on leaving them outside for me to lift and put in my shed. I lost it. I told her I never wanted to talk with her again and have deleted her from FB and blocked her numbers from my phone. Only to learn this morning that she has decided to air our disagreement on FB, playing the poor me act... my sister doesn't want me in her life etc. It's disgusting, classless and pathetic. I'm so upset about having to make decision but I stand with conviction about it. I will no longer allow myself to be her verbal punching bag and continue to be treated this way by her. I'm also waiting to get in with my therapist. I can confidently say that my mother agrees with me my sister airing this on FB is disgusting. Soooo, i guess that is good maybe? I thnk it's the first time my mother has ever agreed with me on something.
I had an oncology appointment yesterday and had to have the 'talk" with him. It was a loose talk in that if this disease continues going downhill the way it has this year, I'm looking at only a couple years left. Not for lack of treatment options but because my body simply can't do it anymore. I've been on chemo for nearly 3 years straight. My cell counts yesterday were so low you'd think I'd continued on chemo not had a 6 week break. I'm in excrutiaing pain and waiting on my pain pills until radiation starting next week. Then in the beginning of December I'm starting Halaven. Has anyone been on this? What were your experiences?
Anyway, thank you again for all of your advice and support. I've made a decisin and while it tough it's the right one.
xo, shelbs
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momallthetime, I was diagnosed de nevo. During a screening breast MRI they saw something worrisome in my breast and caught my liver in the imaging. That was June 2015. I have had followup CT scans and some MRI's to assess treatment response every three months since then. Never had a symptom at all!
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Shelby - I am so sorry for what you are going through. Tough conversations everywhere you turn. Keep pulling those people who do support you close.
>Z<
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I am shrinking my liver mets doing coffee enemas, colonics, other natural therapies, and the help of an emotional healer. My Ca 15.3 count now normal again. I have a very positive attitude and hope this helps you
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Shelby, I am so sorry to hear you are still dealing with this nonsense. Hang in there and keep coming here for the support you deserve.
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Hi Pipptone - Interesting protocol. I am doing quite a few complementary protocols myself in addition to the standard of care. My CO believes that coffee enemas do wipe out liver mets. I haven't felt it was right for me, yet, and my liver mets are now gone due to other treatments. But it is interesting, and wonderful, to hear you are doing so well.
>Z<
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Z - Can I ask what CAM protocols are good for the liver. I started mistletoe injections, but want to try more!
Thanks,
Robin
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Robin - Mistletoe is on the top of my list. I am working on getting over fear of the injections, and for my next scan results. My fantasy is to get to NED and then stop hormonal treatment and do mistletoe. Haven't found anyone who thought that was a great idea, including CAM practitioners, but a girl can dream. I can deal with the ibrance but I hate letrozol. I am going to talk with complementary oncologist in Arizona early next year and get on my knees and beg permission, assuming I have great scan results in December. Or that's my plan.
I am a huge Alpha Lipoic Acid fan. I had 3 weeks of IV's early on during which my tumors all but disappeared. I started Ibrance and letrozol at the same time. I've seen a couple people with astonishing reactions to ibrance, but I still think ALA was a big piece of it. I have a couple of friends who work with the same doctor and ALA and had strong responses.
I currently take 750mg of a liposomally encapsulated ALA 5X per week. It's expensive, but cheaper and more convenient than the recommended weekly maintenance IV. It's partly my confidence in the ALA that makes me think I might be able to drop hormonals. Even as I write this, part of me says BAD IDEA. This is a risky decision that would directly contradict standard of care and the advice of my kind and competent MO. Not my usual path. We'll see how the stars align in the spring.
I hesitate to put the details of my plan out there because I do everything under the supervision of a team of complementary doctors and good medical doctors AND it's my plan, not necessarily the right plan for others. But I put it out there because I know you just found progression in your liver, and ALA is strongly indicated for liver mets and generally regenerating the liver. I know you are feeling like it is time to frickin DO something, and this is a reasonable thing to try. Particularly because you are in good health generally.
I do the ALA in the context of a complex supplement protocol and a good diet and exercise program, as well as Standard of Care. I can PM you the whole plan developed for me by my team, but again I would find yourself an NO or CO that gives you confidence. The one I want to talk to works by Skype (I've heard) and I can give you that contact info by PM.
>Z<
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BJstein wow - can I say lucky? with no symptoms, this coulda been nasty, and usually there are no symptoms until much much into "it". I must say nice catch from radiologist, i find that a lot of times, they would be in disbelief and would disregard odd findings, take good care.
Shelby hang in there, just another couple of days. Too bad you had to get so upset.
Piptone - thanks for the info. What's with coffee enemas and weight loss, right?, i mean sorry to be so blunt but... How do you balance it?
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Hi, Robin. The only thing I know to take care of the liver is to avoid alcohol, drugs, and toxins.
Zarovka, have you considered switching from letrozole to faslodex or tamoxifen? Maybe they would treat you better. I know tamoxifen was easier on me than letrozole.
Shelby, that's a serious talk. I hope you can find the right ways to take care of your body, including all the lifestyle and complementary things that feel right to you. And stepping away from the family drama is very smart!
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>Z< Thanks for the advice on the ALA. I have a NO who is a FABNO (which was advice given by Bestbird to make sure they are FABNO) and he is in Tuscon Arizona. I traveled there for our initial consult and we have phone appointments as well. I plan to call him tomorrow about the ALA and advise him on my new scan.
Giving Mistletoe injections is so not a big deal. I thought I would never be able to do it either. But the injection needle is so tiny, you don't even feel it. Make sure the mistletoe that you get comes from Europe. The last NO I had was sending me mistletoe that was manufactured in the USA. I purchased 2 boxes of it and never even had the desired reaction. I had to tell him I only want mistletoe from Europe. I was doing great on the European mistletoe then that NO left the practice and they no longer offered the European version. My new NO in Arizona found a pharmacy in Germany and sent them a prescription. So my mistletoe comes straight from Germany. I just restarted my mistletoe 2 weeks ago and it makes me wonder if I had remained on it.....would that new tumor have popped up??
Can you be so kind to PM the whole plan and I will run it by my NO and see what is right for me.
I'm sorry you are having a hard time on Letrozole. In my opinion Faslodex was so much easier!
Robin
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Shetland - I hate switching A/I's without progression, but I guess if I am talking about dropping A/I's altogether, then I see your point. One simple thing I am going to try is to switch to a new brand of letrozol.
Robin - I am glad to hear that mistletoe is easy to inject. If the met appeared while you were not on mistletoe, I would consider trying just the mistletoe for a while, at least on the CAM side of the equation, and see what happens. There is a balance between hitting the cancer with multiple treatments (which can be really effective) and holding some of your arsenal in reserve.
>Z<
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I'm looking around for a generic letrozole with less lactose and other junk.
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Shelby. So sorry you had to deal with such aggravation but glad you decided to remove your sister from your life. You don't need someone so toxic. Sending you hugs
Bab
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Dear Z.
OOO, so sorry to hear about you and needles.
I've done 2-3x weekly mistletoe injections for 20+ years.
The injections use tiny, short, slender sub-cutaneous needles, not big, fat intramuscular ones!
I use a 1" 21-gauge needle screwed on a 3 ml syringe to draw up the mistletoe medicine along with another, different 1 ml medicine into the syringe, then switch out to a 1/2" 30-gauge needle to inject. The needle itself doesn't leave a mark or bruise or feel uncomfortable. Sometimes, I get a little pocket of medicine just under the skin. I rub it and give it literal strokes for keeping me alive and well and sane and connected 20+ years after chemotherapy failed me. I have engaged many hormonal approaches including tamoxifen, megace, femara (3x) , aromasin, estrogen and testosterone (which I think you'd enjoy).
I trust this mistletoe medicine. It's now difficult, though not impossible, to find Iscador brand in the USA. I'm using Uriel's Viscum Mali (l) 2 mg which is 1/10 the strength and I just don't get the reaction I might wish (the nice red welt). On the other hand, Uriel's mistletoe/viscum meds are available OTC and they offer many different ways to apply viscum and many different combinations. You'd need to talk with their pharamcist. You can self-prescribe something like the ointment (use it topically on tumors on my chest).
Can you tell I love this medicine in the context of the whole matrix of anthroposophic medicine.
A good place to get a sense of the whole medicine matrix is Lilipoh Magazine.
If you want a personalized mistletoe/anthroposophic medicine assessment and treatment plan and can spare the cost and time, consider a clinic retreat at Steiner Health Center.
For my money and time, I prefer a week of deep healing at Commonweal's Cancer Help Program for overall support, but wouldn't get the mistletoe/anthroposophic medicine workup. OTOH, it's a great place to get to the core of it all and put one's
newever-changing life in context.all healing and loving kindness, Stephanie
cancer is kicking my butt big time now. That's fine. I've so enjoyed and appreciated my 20+ "extra" years.
Threshold Choir song:
Breathe, open heart
Breathe, bless this medicine
Breathe, gratitude
Breathe, breathe.
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Stephanie - Mistletoe has risen to the top of my TryThis? list because of your experience with it. If I die 25 years from now surrounded by friends and in exceptionally good humor, like you, mission accomplished.
Your post and Robin's experience remind me that dosage and type of mistletoe are terribly important. That is why I am holding off until I get to a CO really experienced with the stuff. I don't want to make a mistake. People seem to think that the complementary and alternative treatments are things you can do yourself. In fact they require more specialized expertise. There are no well tested and codified rules, recipes or clinical trials to follow with alternative treatments so you have to find a smart person with very particular experience in the treatment you want.
Cancer really has never kicked your butt. So glad to get this post. I look all over for you every day.
>Z<
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>Z< & Stephanie, I also tried Uriel's Viscum Mali and then the Pini Series and neither one produced the small red welt that is supposed to let you know you are on the right dose. So I asked my NO to get me something from Europe and he put me on Abnoba Viscum Fraxini. I started at 2mg, then 10mg, and now I am at 20mg.
Stephanie, I am glad Mistletoe was so good to you. I pray I get to use it a very long time.
BTW: Suzanne Somer's swears by it and has been using since 2001 when she declined chemo for her breast cancer and started using Iscador.
Robin
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Stephanie you have a treasure of information. And Z is right, you are a breath of fresh air. Hope you feeling better.
There is so much I don't know, and I would like for her to get some of these supplementals, but I don't even know where to start. They could sell me the London Bridge, I don't understand about this stuff at all. Onco, doesn't say anything about any of this things. She is dealing quite a lot with mouth sores.
Onco said to do scans next week, it would be wk off XELODA, only 2nd cycle, but 12 wks away from last PET/CT and Onco said she prefers to know than to postpone...., because Xeloda was given in the middle of the other protocol.
Do you ladies know the exact EGFR rates on your Blood tests? In the Portal it only shows that it was done, but not the numbers, should I ask for it? Is it important?
Babs are you back from Florida?
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Momatt- I get home Thursday night. My Dad's actual birthday is Wednesday and he wanted me here for that. Then I do chemo Friday after work and head off to Paris and Strasbourg Monday night-quite a whirlwind!!!!!
Babs
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GBig love mom and friends
Thank you for your thoughts.
Mom I think a good place to start Learning about alternative is a book called anti-cancer a new way of life by David Servan-Schriever. Check my spelling on his name but the title is right.
You need hope and help and practical guidance to find something that is acceptable and sustainable and helpful for Dani and all of you. It makes no sense to pursue false promises from either conventional or alternative medicine.
I suspect though just keeping up with each day is more than enough and encourage you to focus on the love and support and kindness and being together.
I also encourage you to focus more on lhealth and less on directly fighting the cancer.
Though it's important to fight and address cancer, quality-of-life matters so much more than being beat up by treatments or spending additional hours getting tests before it is too early. Or jumping from treatment to treatment or specialist to specialist.
Why waste time on all that when love and shortening existence is all we have.
A balanced approach Seems the best and I do not know what your balance is, just how desperate you can be when you come here.
Big love and sorry this is written on the cell phone. Pardon my typos it's st before dawn here and I'm just waiting out some symptoms that were bothering me. Supporting and loving you is the best medicine for what ails me.
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Hello everyone. I thought I would jump in and say hey. I have read many of your posts and wanted to thank you all for the support you have provided to even those of us who have not actively participate in this forum but are reading and looking for hope.
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Hi there NO1-2NV. Greetings from NM. Would you consider completing/updating your diagnosis and treatment history? Where do you get treatment?
>Z<
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Hi <Z>. I have had a number of treatments including being involved in the Ribociclib and Faslodex study that I had to drop due to liver mets. The study was for bone mets only.
I receive all of my treatments at the University of New Mexico Cancer Center and clinics.
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Interesting. I considered the ribociclib trial at UNM but it was randomized so not everyone got ribociclib. I went with Ibrance to be sure I would get the kinase inhibitor.
UNM is good. I get some diagnostics done at UNM but moved to an onc in Santa Fe to reduce travel.
>Z<
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Mom, and everyone else,
I'm with Stephanie regarding quality of life and treatments. I recently stopped treatment because I was progressing while receiving chemo and having more side effects than I was willing to tolerate. It is the right choice for me. I am now getting all my loose ends tied up and waiting for my docs to agree that I have less than six months so that I can get the meds to end my life. I feel free from the constraints the chemo placed on my QOL. I'm spending time with friends and my kitties who love having my lap around all the time to sit upon. They trade places because they're too large to sit together.
Both of my docs told me that I'm in a very small group of people who choose to stop treatment .. Something like 3% of us do that.
No one can say what the right choice is for anyone else
Just sharing my experience.
Love,
Patti
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