How are people with liver mets doing?
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I am posting this general audience article on Metronomic (Low Dose) Chemotherapy for everyone moving past hormonal treatments. It's an option to consider. It is certainly on my short list. Even Xeloda can be done as low dose chemo therapy.
If you want to take a plunge into the literature, here is the PubMed search.
Dr. Chue is leading the development of this treatment at his clinic in Seattle, Lifespring.
It's a good option if you are being offered traditional chemo but you have reservations. There is a lot of research that show low dose chemotherapy works better.
>Z<
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Artist aghh so sorry you have to deal with people that cannot see what really matters. So good that things are holding up for you. This goes on all the time when D gets her results back, it will say something like: hmm the right side is stable, the top is small progression, the bottom we are not sure, it's comical almost.
Shetland sorry that you are dealing with progression. And also what Artist said, D's onco also refused to touch the many liver lesions. It's too many to do something about it, so we keep hoping that the treatment systemically will do something.
Z I wonder what are the limitations or contras from TACE. I do feel that her Onco is very conservative. Every time I mention a/t to do with the liver, she just looks at me like I am from Mars.
Kaayborg so glad that you are going ahead and doing something about it. I am still hopeful that they would do something like this for D also. The thing is, in these large Centers, when a doctor is not working for themselves, I am always wondering is it Corporate that want something done in a certain way, or it's a good medical decision. I am just too cynical.
I am not even sure Xeloda is working so well for Dani any longer, she had to be off for 2 weeks, she started again but at a 7 on 7 off routine, her TM's have been creeping up, I still don't have the BT results from this week. She still could not have the Ixempra this week due to very low Platelets so...it's kinda of a mess now, disappointing.
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Shetland, yes this is the first of bone mets and the omentum concerns me a lot. But I agree with everyone that liver shrinkage is good. I only have two tumors in the right lobe that they mention from scans so plan to look at all of the aformentioned local treatments for future inquiry. I'm at a small town cancer center and sometimes think they don't keep up on all the latest breakthroughs as well as the larger centers. I am thinking of consulting with UCSF soon for more feedback. Funny that Mom has reservations about a large center! LOL! I guess I tend to be pretty cynical too.
Thats for the latest link Z, I have quite a reading list to catch up on now that we are all settled in the new place. I have been reading a few things about low dose chemo doing a good job. I will call myself stable too and convince my brain to stop trippin! Shetland and Kaayborg, we will be anxiously waiting to hear some great results.
Robin, that is a amazing about the proton therapy. May it continue endlessly! I don't understand my sisters backing away from me and my disease. I always thought we were so close. I guess they just don't know what to say or how to help or are scared or whatever the reason. I just know I would never just let them deal on their own.
Mom, Hang in there as we have said so many times to you. Times have got to get better for you and Dani. I'm putting you and all the ladies in my prayers tonight.
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Artist, I think it is a good idea to check in with a large cancer center when things change. Start the process early so your records can be sent and an appointment made in time to be of help in your treatment planning.
MomATT, I suppose Dani's doctors don't want to put her body through some of the treatments, out of concern that it could hurt more than help, since she has been through so much. Especially something like a local treatment for liver that could be hard and still not help the other areas. Hopefully, back on Xeloda the TMs will go back down.
Interesting topic, Z. Thought you should know your first link does not work.
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Artist, If you only have 2 liver mets, then microwave ablation would be a great choice. My RO told me this procedure is the least invasive and has great results, with hardly any side effects. Since they are not using radiation, you don't get all the fatigue that come with it. I hope my 3 tiny mets disappear, so I can get the bigger one ablated!
Some people just don't know how to handle someone they love, when they have cancer. My best friend of 30 years stopped calling me and would just send me short text messages every once in awhile. I asked her if she was avoiding me and she said she just didn't know what to say to me! I told her I am still the same person I have been for that last 30 years, and we don't ever have to talk about my disease if it makes you uncomfortable. I just want to be treated the same as I always was.
Well I am off to Clearwater Beach in the early morning!!! Some much needed rest and relaxation, and I am shutting out the "c" for 6 days. I'm not going to even think about it.
Good night all!
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I'm being booked for RFA. After I finished chemo last year, the remaining tiny liver mets were to be ablated but they couldn't find them on ultrasound Feb 2016. After my last scan they thought there might be subtle progression so I just met with the radiation liver Dr and I could have RFA or targeted radiation. I chose RFA because I felt you need to have less than 4 lesions to qualify and not everyone can have it so I should do it now while I have the chance. Also, radiation can't be given more than 1 or 2 times, so I thought it made more sense to choose RFA. I'll need a repeat special liver ultrasound before. Hoping they can see the area (unless all this mindfulness really made the mets disappear). I mean why not zap them months ago when you could find them!
Kinda of nervous of the procedure after watching YouTube videos!
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Bstein, best wishes with the tumor zapping. Not finding any would be even better. My motto is never watch anything medical, lest I faint. Mindfulness -- are you practicing meditation or yoga?
Rpoole, enjoy your six c-free days!
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I've corrected the link to "MIA In The War On Cancer: Where Are The Low-Cost Treatments?" above and in this message. The article talks about how very effective complementary treatments like low dose aspirin are not widely used due to a lack of financial drivers. This is big theme of mine and why I am so committed to complementary oncology.
But buried in that argument is a good discussion of low dose chemo. I do think it is something more of us should be considering.
>Z<
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so CT scan shows 2 little spots starting to wake up. Doc is still moving forward with falsodex and ibrance. Hope it works. I'm terrified of course. Ugh.
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Hello, LvinAZ. Here we are beginning another spring! Six years for both of us since original diagnosis. Mine is waking up, too. But we are ok. We are ok.
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Sorry to hear it Lvin. Waking up does seem to be trending. Grrrgh. But you are okay. You ARE okay.
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LvinAZ - Fingers crossed that faslodex and Ibrance makes short work of those mets. It certainly can. Depends on what they are. And it can take 6+ months to get a response out of this combo.
>Z<
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thank you all. I sure hope it works. Dr days spot is very tiny so fingers crossed
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Thanks Robin, I do think I will be asking my Onc next time about this procedure and others. I feel the need to do something besides waiting for treatment to fail then moving on to the next....My friend of about 30 years said the exact same thing and I feel the same way. Just say you still love me and have fun with me! I can still do most of the same stuff we used to. We don't have to discuss my illness or we can if you want. Whatever, just don't abandon me. It just seems that when people find out about my condition they sort of write me out already. I am so grateful for my "virtual" friends! And we are all OK today and tomorrow and so on....
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I live in a small town and it's been hard to completely hide that I have cancer. The cat really got out of the bag when one very kind friend with cancer asked the entire baptist church to pray for me. But I've still been able to get my privacy back. When people ask, I tell them everything is just Great! It's what they want to hear and then we just switch back to normal chat. People who don't have cancer are entirely shut out of this experience. I don't fault them for pulling back and not knowing what to say.
Nor do I have the energy or interest to educate them. I hang out here with people who teach me how to deal by their example. I let the rest of my life be normal, and everyone around me without cancer feel comfortable.
Thank you all.
>Z<
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Shetland I am trying everything
reading: You are the placebo, Quantum healing, Breaking the Habit of being yourself; How to loose your mind and get a new one, The power of belief, You can heal your life, etc. This can be stressful because the readings emply that we have complete control over our lives and health. Really, can we think ourselves out of this? I'm sure we all would if it was possible. I'm sure giving it a try! Imaging a future where I'm told that I have been clear for so long they are discussing stopping treatment. Concentrating on what I do want instead of what I don't want. Still...every ache and pain causes me fear...am I putting out there that I expect progression? It's exhausting really.Artistaheart...I agree why couldn't they arrange RFA when my three liver mets were visible. I know some treatments can make them disappear so maybe they hoped that would be the case. Watching them for a whole year can give the little buggers a chance to mutate too. I'm having a special targeted ultrasound March 7 to assess the issue as you need to be able to see the buggers on ultrasound to target them with RFA. It's terrifying being a patient isn't it, pocked and prodded.
I am greatful to everyone who really is trying to save my life! Thank you to all you wonderful women! May we have the long life we all deserve and want! I'm trying to imagine myself 84 which my goal! It's possible
I'm putting out there that I expect to be cured, period0 -
Hi ladies,
I see some of you have had good news and some have had some kind of progression. i am dancing now to celebrate de good news and praying and send good vibes for every lady that needs.
I dont write often but i read almost everyday.
When i have bad news or weather im feelind blue i dont like to write. After some progression while on xeloda i was switched to faslodex but i was have hard time breathing so the MO decided to move to chemo, Navelbine. Two weeks on and one week off. I have had 2 treatments so far and i think that i can breath better and i really hope this drugs works for very longggggggggggg time and takes me to NED.
About 2 weeks ago i began to have abdominal pain that was tolerable but it got worse and worse. MO put me on pain medicine and it helped. 5 days later and im not taking the pain medication as often. On monday i go for another treatment. I´m also taking cannabis oil at night.
I wish we all have a nice weekend and a good response to our treatments.
Cheers
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Nice to hear from you Ziz. I think you will do well on Navelbine. You are off to a promising start. Can you update your profile so we can follow your treatment ...
>Z<
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Bstein, I hope it was clear that I asked if you were doing yoga and meditation because you mentioned "all this mindfulness" -- and not that I was telling you that should be doing it. The last thing any of us needs is more shoulds. Anyway, I do think that the kind of positive thinking dogma that says we can make ourselves well or ill with our minds is oversimplified and harmful. So many things can contribute to cancer: genes, environment, lifestyle, random mutations, etc. Some things we have control over, some we don't, some we don't even know about or understand. It is not our fault. And no, a negative thought will not invite cancer. In fact, I say that the stress of trying to always be positive, denying our real and appropriate emotions, and striving to control something we can't control, can't be good for us physically or mentally. Personally, I like to think in terms of holistic wellness. I do things that promote health, joy, and serenity, with the goal of taking good care of myself, mind and body, and enjoying my life. Out of love for myself and others, and not out of fear. Absolve yourself of the guilt and pressure.
Ok, off my soapbox now.
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Shetland, I echo your thoughts exactly. Thanks for the words.
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A year ago, on a Friday evening I got the call from my breast surgeon, he asked: "remember that 8mm spot in your liver? Is back and is 4.5cm!" I kept him on the phone for more than hour, what was I going to do? Could he help me get a new oncologist since mine downplayed that spot, said it wasn't cancer and extensively treated me as an early stager?
That weekend we were supposed to move to a fancy apt downtown to cut my hubby's commute and to enjoy life as urbanites (since our dreams of having children were gone after cancer). Instead we cancelled everything and cried all weekend. How was is possible that we were so stupid and didn't get a second opinion on that "spot"...Why did I follow the stupid advice "stay offline" don't Google, is scary so just read this textbook and talk to your doctor...
I found this thread and it became my lifeline for the next two months that it took to get started on treatment. I learned that I'm not alone, that I didn't do anything conciously for this to happen (Shetland says it better above), and more importantly I learned that we have to deal with this.
My first line of treatment was good with little side effects but another rude awakening since it lasted 8 months. We were so wrong thinking I was going to be on Herceptin and Perjeta for many many years, I progressed. So on to Kadcyla...scan 2 weeks ago and liver mets can't be seen! Yes, I'm happy, but now I understand a lot more about this disease and know this can change anytime.
I'm very thankful for this site, every person that took the time to encourage me, for those that are gone but their words are still here to educate us...
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Hi All,
My wife just started Xeloda and after just 1 cycle (2 weeks on / 1 week off) her Alkaline Phosphetate (ALP) rose from 106 to 133. Has anyone experienced something similar ?
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gramen - Good to know that you are on a stable course of treatment now after such an ordeal. Do not look back any more and have positive thoughts for the future.
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Gramen, I loved reading your post!
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Let ... Live,
That's not a Huge blip. Did your MO freak out? If not, stay the course, take the pills, and keep breathing.
Nearly all of the drugs we take get synthesized or processed in the liver. Xeloda is an example of a drug that absolutely requires liver interaction to become the drug it needs to be. So, her liver is working a little harder. But that amazing organ can do it without breaking a sweat.
It is very sweet to see what good care you are giving her.
Jennifer
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Gramen - so glad Kadcyla is rocking the house. I sure wish we had a way to find the right the treatment that was better than throwing darts at the board. But looks like you got the Bullseye on the third try. Not bad.
>Z<
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Jennifer, thanks. Yes I suspect too that its probably from the meds. Let's just hope that it is. The MO basically said wait and watch and my wife is scheduled to get the scans after her 2nd cycle.
Today we got an MRI result back which read like this (done yesterday) -
"T2 hyperintense metastatic foci throughout the hepatic lobes measuring up to 1.7 cm in segment 3 , unchanged to slightly larger compared to 1/5/2017"
The last time (1/5/17) the largest was 1.5cm mesaured using CT.
Is there any difference in CT imaging and MRI when it comes to measuring the size of lesions or is this progression ?
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LMWL - My understanding is that tumors look bigger in MRI's. As an example, I had a CT and an MRI at my initial diagnosis only 2 days apart. The MRI reported a mass that was quite a bit bigger but the cancer is not going to "grow" in two days. Here is the summary:
MRI of the breast 1/8/16 reveals a 4.6x3.3 cm mass
CT scan of 1/6/16 revealed a 4.2x 2.3 cm mass
So if they are comparing MRI with a CT, then that is absolutely not progression. And even if it was a CT to CT comparison or an MRI to MRI comparison, the change is within the accuracy of the technology.
There is a good chance that a CT scan would show your wife improving. I think you guys are on track.
>Z<
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Z and Jennifer - thanks. At the very least you made our weekend feel good. We shall see what the coming weeks bring for us.
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Thank you Shetland! My new mantra will be, "absolve yourself from guilt and pressure." I absolutely ambrace your point of view and strive for that. Yes I do Yoga and a warm barre class (not sure about hot yoga and lymphedema risk according to something someone posted recently and do weights. I thought I would try all that, "you can heal yourself" stuff between my 3 month CT scans. If nothing changes, then blah, it's too hard and life is too precious to waste on things I don't enjoy! Serenity, joy and health promotion it is!
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