How are people with liver mets doing?
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LisaJo,
Good on the Prilosec!
Doxil is hard. It's the hardest chemo I've done, and I did a year of Taxol, and a year of Halaven. It is sneakily exhausting. Do you know where your hemocrit levels are? Anemia can bring on all the symptoms you are describing.
After climbing the stairs, I have to sit down to catch my breath. I can do something for about 15 minutes (like laundry, or tidying), then I need to rest. I can move about 1/4 of every hour. But, since the anemia isn't medically critical yet, my MO doesn't want to deal with it. Red cell stimulators can increase tumor growth, and transfusions also have some baggage I don't want to mess with.
Doxil messes with the gut biome more than other chemotherapies I have been on. I get a lot of gallbladder pain on this therapy, and have been tons more constipated. Could that register as the liver pain you are feeling?
But, it's been keeping me stable, and the game in cancer land is to suck the vapors out of each therapy before moving on to the next one, so I abide.
I'm surprised your MO chose Doxil over Halaven or Xeloda. They are easier, frankly. I may not test as triple neg, but my cancer behaves like it. The only anti-hormonal that has worked for me was Faslodex.
We've been at this awhile. Could we just be getting a bit worn out? It's been a rough year for me. I had three eye surgeries, developed a DVT, and my Mom died. I long to get my mojo back. Every time I feel like I might be getting stronger, something happens to land me back at the bottom of the stairs. But, I'll keep on going. My family still needs me in the game.
Can I just say how much I'm in awe of you working this whole time? Damn, girl! How did you do it? There have been days in the past six years where I have been as one with the sofa. And you whipped your fanny out there into the working world?!?! I bow down in your general direction.
Jennifer
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Lynne you are a lovely person. I love ti read your posts.
KC - I had 60%+ liver involvement and Abraxane has knocked it way back in less than 2 cycles/6 weeks. Chemos are da bomb with fast growing cancer. I had a very similar unpleasant surprise in April when my indolent cancer suddenly went bonkers. Fortunately that made it responsive to cytotoxic drugs.
Abraxane is relatively easy to tolerate. Doxil would have been my first choice because the synergy with immunotherapy.
Z
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thanks, Z. I pray I have similar results. I'm going to try your fasting approach for sure. Unfortunately, I cannot do the exercise regime. (You are absolutely one of the strongest woman I know!).
Grannax - anxiously awaiting your PET results. Thinking of you, praying all is well, and you'll post good news!
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KC - The book to read is The Longevity Diet by Valter Longo. Not actually about longevity, more about managing chronic disease with nutrition, but longevity is what sells I guess. There is a chapter on cancer with sections on combining chemo and nutrition. I sometimes water fast to deal with constraints that you may or may not have; however, a water fast is no longer Longos recommended dietary complement to chemo. The Fasting Mimicking Diet, described in the book, is easier and as effective or more effective. PM me if you want to talk this through.
Valter Longo of USC is one of a many researchers looking at nutrition and chemo. He is the face of this approach only because he is a charming italian fellow and a good communicator but the research is very deep. This is a good video where Longo discusses differential stress resistance, the principle underlying the strategy. We evolved to deal with periods of limited food availability. Normal cells stop growing when they are in a low nutrient environment. In fact normal cells use these periods to regenerate and clean up debris (google autophagy). When the normal cells stop growing, they are less effected by chemo drugs that target the growth cycle. Cancer cells have dis-regulated growth pathways. They do not stop growing in response to environmental stress. However, trying to grow in a low nutrient environment weakens them. It makes them more vulnerable to chemo. In mice, the combination of chemo and a fasting mimicking diet is greater than the sum of the parts ... it appears the strategies are highly synergistic.
Regarding exercise, exercise is whatever you can do. A brief walk is better than sitting, for example. I am also coming to feel that a yoga sequence that works the abdomen specifically is as good or better for improving drug delivery. I can get the hepatic artery pumping with an abdominal yoga sequence ... that may be more targeted than, say, walking which gets blood, and the drug, everywhere. This can be as simple as lying over a bolster, gentle twists.
In any case, go into chemo ready to hit it into the bleachers ... because I think it is possible.
Of course, you can't have an infection!?! ... keep us posted.
>Z<
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Z - have you seen any research on regular fasting and targeted therapy (no off days)?
Thanks,
Mary
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I have not read about the same proven synergy with targeted therapies. First, the targeted therapies are new. Research on fasting/FMD with chemo goes back a couple decades. I imagine someone is pondering how fasting/FMD might work with targeted therapies. Some of targeted therapies interfere with the cell replication cycle. Fasting/FMD may enhance that activity as it does with cytotoxic chemo therapy, but I haven't seen any papers. (I love to be wrong, BTW. Please correct me if I am.) Second, as you suggest, the dosing schedule for chemo - high doses 1-3 weeks apart, creates a unique opportunity for a short term, extreme, nutritional intervention that you don't get with targeted therapies administered without a break.
There are arguments for fasting, or diets that have some of the key effects of fasting, independent of the demonstrated synergy with chemo treatments. If I go back to a targeted therapy at some point, I will probably fast or do the FMD once a month or so. The superwoman mojo has persisted since the vacation rental flood/adrenaline-sugar rush last Friday night. I can't imagine any other reason that I don't feel like crud. However, they haven't seen very strong signal from fasting alone as far as slowing down cancer goes. The synergy with targeted therapies has not been reported, yet.
>Z<
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Thanks for your reply, Z. I haven't seen anything but thought you might have.
Glad you are still feeling like superwoman! We need those days! I miss my old superwoman.
Mary
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Blainejennifer, I did not know that Doxil was that hard! I assumed since you had been on it so long, it must not be so bad. I went in thinking it would be a breeze and was taken a little off guard when the side effects crashed the party without warning. If my scan results are good, then it will be worth it.
KC, I am so sorry to hear about the scan results. The only caveat would be to make sure that the appropriate person, trained in reviewing immunotherapy-treated patients, is reviewing the scan in case some of the effects of immunotherapy cause tissue to light up similar to metabolically active tumors. The spleen is an uncommon location for mets. Do you have ILC? The liver can bounce back quickly and regenerate itself. As far as mets are concerned, easy come, easy go. Those that progress rapidly also tend to die rapidly with the right treatment. I hope that you ultimately receive the Y90 once the liver is under control. I know that typically, Y90 is given when mets in other organs are stable. However, I recall several people on these boards that had Y90 when mets in other organs were not necessarily under control (I recall someone had active/non-stable lung mets and another had active/non-stable mets in multiple organs). The argument in those cases was that the liver was the most pressing issue. You should be able to continue with treatment while on Y90, so long as it is not a chemo known to compromise the liver (like Irinotecan). I have continued on Doxil without breaks, as has Babs, and Grannax continued on targeted therapy. My mets are so aggressive, there is no way I could be off of treatment for 12 or so weeks. My IR did space out my right and left lobe to 8 weeks apart, given the tumor burden involved in my right lobe. He wanted extra time to ensure that no liver failure occurs and would safely know by the 8 week point as liver failure would present by the 5-6 week point.
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Hello all
I m on 6th day 1st cycle Taxotere, Cisplatin. Still sick. Very tired. I had nausea for 4 days despite Dexamethason. Should I ask MO for extra meds???
Thank you
Lena
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LENAGREECE, definitely ask for nausea meds. With all the great meds out there you should not be sick. When I started Taxol I was sent home with Compazine but it knocked me out. Worked wonders on the nausea but I slept all day. Backed off a little and now I use Zofran when I have nausea. Just the right balance. Hope you feel better soon-Jil
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Lena:
Nausia is horrible and all consumin and I feel for you. I definitely feel you should ask for more help with this. I am on Cisplatin only and have been has prescribed the following (to take for first 3 days)
Dexamethason 4mg once a day (I take mornings as it's a steroid or I can't sleep)
Olanzapine 10mg once a day (evenings as it can make me sleepy)
Odanestron (Zofran) 8mg every 8 hours (3 a day) and as required after 3 days (I've not needed to take more)
I haven't felt any nausia with the two doses of a Cisplatin I've had so far. Zofran has particularly been My go to for nausia over the years. When I was on Xeloda it was really affective (I too, 4mg then as required) and way back on my first chemo (AC)I was only badly nauseous when I stopped the Zofran early. Constipation can be an issue, especially with Zofran and I try to remember to get ahead of this with stool softeners or laxitives if needed.
I wish you relief from your nausea as it really is not fun at all.
Sarah
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Thank you so much Jil and Sarah. Due to unbearable nausea I thought I could not continue this chemo. I will prepare myself for next cycle and hope it will be better.
Thank you
Lena
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Lena,
The nausea medications will be truly helpful. I have had much success with Zofran and Compazine. If it gets really bad, you can ladder the two medications. That means you can take both - just follow the dosing for each one, and stagger the dosing schedule so that you are getting some medication every three to four hours.
Also, don't wait until the nausea gets really bad before taking medication. I find it better to take it as soon as I start to feel queasy. I used to wait until the nausea got really bad, but then the medication would take too long to work, or not work at all.
These drugs are extremely constipating. Have stool softeners and senna handy. It can be troublesome, as constipation is also a cause of nausea, so keep an eye on it.
Take care,
Jennifer
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Z - can I just say that I love you, and all of the people on this site.
I learn so much from each of you! I’ll 100% read that book, and am sure that I’ll reach out to you for advice. I need to do anything/everything to help give me a better fighting chance!MO is setting me free today—YAY! Thought for sure they would keep me another day to get a pain management plan working, but we have one to put into motion at home. I had SEVERE back pain out of nowhere last night—probably the worst I ever had (and I’ve had A LOT!). It took 2.5 hours and a lot of pain meds for the agony to subside, and get some sleep. Still hurts, but it’s probably a 5 vs. the 10+ last night.
Sounds like I’ll start Halaven early next week. MO wants to wait for Tempus report to come back before we jump the gun. I’ll keep you posted.
Thanks, all, for your continued support! As always, wishing everyone great results, lots of longevity, and pain-free/nausea-free days!
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JFL - you bring up interesting points about Y90. If you recall, I went to see Dr Gradishar, and he said he usually only recommends Y90 for palliative reasons, and may not have done it now. Well, aren’t we at a palliative point now?
I also think about the insurance issues I had getting Y90 approved. Had I not had to wait so long for the approval, I would have had the first lobe done by now...theoretically before it spread to the entire liver (grr!). I can’t live in the past, and what-ifs, but still gets under my skin a bit.
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Z what an example you set for everyone. So interesting how your energy is staying, good for you.
KC i can't imagine saying Y90 is palliative. And again D as many others had a lot going on while on Y90. And no she did not stop tx to get the Y90. She was even on rads because e/t was so bad, and they timed it so, she gets a mere 3 days or so off to push the Y90 in. And here intermission was more like 6 weeks for the 2nd lobe. She did feel a hardness after the 2nd Y90 that really bothered her. We never got around to investigate, because more pressing issues were coming up all the time, but she was upset about it. To be sure, there are doctors that think differently, i'm just giving you our experience.
I keep thinking how Dani had her issues ignored by the doctor, things were just piling up, i am so angry and that's one of the reasons that i did not call him on it yet. We precisely seeked him out because he is known to fight for life, e/o knows. BUT somehow, either he's getting too old (is in his late 70's), i don't mean agewise, but really im thinking if he was not thinking right, if he forgot, something went wrong in the way he treated her. Yes, he liked D, he spent time with her, but he did not pay attention to the last symptoms. What would you say, if when she was telling him all the issues iwht the liver, including swollen feet (like trunks), yellow eyes - he was looking into Hepatitis? Yes, i even have the Blood test. He told her that. WHY??? One thing i could think of is that he was protecting her. He knew how bad it was and did not want to scare her. Fine. BUT he did not tell her hubby, or myself. He knew we both were with her all the time. Very weird.
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lisajo6: sorry you are feeling so bad. Do you know about social security disability for people with metatastic disease? You might want to go to their web site and check out the criteria. I believe it is called the compassionate care program. Something you might want to check out if you feel you cannot work.
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Hello. I haven't posted before but I've been reading this thread and others in the Stage IV forum for a few months. I'll eventually fill out the bio but I was diagnosed de novo in January of this year. I was in very bad shape and the Oncologist said I probably had only days left without treatment. I knew it from how I felt! Anyway I have liver mets, numerous bone mets, and chest-area lymph nodes involved. Just the effects on the lungs would be a long story. I went once a week for ten consecutive weeks for taxol chemo. Then I started on Ibrance and Letrozole. I'm on the third round now and early indications from blood work are that I am responding well with tumor markers down quite a lot. I'll have scans in July and I'm hoping for good results then. I'm 58 with a very supportive husband of nearly 35 years and one grown son who is doing great on his own but he lives too far away!
I have learned so much here and I thank you all for sharing your knowledge and experiences. I'm happy when there's good news and so sad when there are setbacks and losses.
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Welcome MuddlingThrough. Keep in mind that, at a certain point, the extent of the mets is less important than whether they respond to treatment. Sounds like you have had a great response. We have a great Ibrance forum you should check out, but stay with us here in the liver mets thread. We switch treatments and move from treatment forum to treatment forum, but once a liver metster, always a liver metster ... this forum allows you to follow people as the transition from treatment to treatment.
Tumor markers dropping is a great sign ... you got this. Stay with us.
>Z<
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KC, you also bring up a good point - the old school use of Y90 for BC was palliative - to alleviate pain and discomfort - without regard to other mets sites. Sounds like you could make a good case for qualifying on that grounds!!!
Welcome MuddlingThrough. Great news that your treatment seems to be working. I bet your first scan will deliver good news.
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Muddling Through: Welcome. So great to hear that your TMs are way down. Sound like your treatment plan is working well for you.
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mom - what Dani went through towards the end is heart crushing. One does hope that the doc was protecting her, but I'm not really sure that is his job. As you said—at the very least, he should have told you and her DH. All of the liver issues/symptoms she had are classic of liver failure, and it's deplorable that he tested her for Hepatitis. I completely understand your anger.
Your love and strength for Dani are unmatched. I can't even imagine what a mother goes through watching this happen to their DD. I think about that all of the time with my mother. She's been a godsend, helping keep my small little family straight. She's there for us at the drop of a dime. She doesn't get involved on the medical side, which I'm okay with, but I know she would switch places with me if she could. I have to imagine that any parent would wish that for their child. I was in awe of the way you fought and advocated for Dani—she was so fortunate that you are her mom.
Sounds like her DD's are slowly moving through the grieving process. I'm sure it will take some time, but with the contInued support of you, your dd's, and all of those that love them will help them through. Screw all those that think you're doing too much—that's justwhat family does!! xoxo
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Welcome, MuddlingThrough. Sorry you're here with us, but sounds like you are responding, which is great.
You will love this board—the compassion and knowledge from all of these women and men are amazing. I have learned so much, and know you will, too. There are no stupid questions, so ask away. There's bound to be someone here who has had similar experiences, and can help you through.
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I had a liver scan today and it looks like I will be switching out of Navelbine. I was only on it for two months, but it isn't working, apparently. I haven't seen my report yet, but my doctor cancelled my chemo and wants to see me tomorrow to start something new, so it's pretty clear that Navelbine hasn't helped. I'm disappointed, having had 18 months of stability on Doxil.
I think he plans to put me on Faslodex and Verzenio. I had a great 3 1/2 year run on Faslodex alone from 2011 on, and I hope that the new drug will give me another chance with it. It will be nice to have a chemo break for awhile, although I have heard that Verzenio can be tough. He mentioned starting me with a lower dose, so maybe it won't be too bad.
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Hi Sandilee, It's perfectly reasonable to see if the cancer that grew resistant to Doxil has also become dependent again on estrogen, and of course adding Abemaciclib to Faslodex is very different to Faslodex alone. Another drug you can ask about is Taselisib or GDC-0077 (or Alpelisib) as examples of drugs targeting PI3K, the latest phase 3 results of which will be in the headlines on Saturday. You have not had affinitor/aromasin? which hits mTOR in the same pathway, but anyway the data from Sandpiper indicated that they also got responses from women who had previously failed A/A. So that Taselisib could be on your list for future too?
Do they take additional biopsies at this point to see what you are dealing with?
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Zarkova...I have a wonder woman shirt you can borrow. I'm not in active treatment at this time (Thank God) but I love the feeling of not just doing normal work, but that above and beyond the healthy people level. It makes me proud and hopefully inspires others who are going through things not to be so scared - go out and kick butt if you can. You did!
A big inspiration for me was seeing LeBron James wrapped in ice after our Cavs won game 7 in the Eastern Conference Finals. He's 33 (I guess that is "old" or "older" for a basketball player) and he played in every. single. game this season. He played his heart out in 95/96 minutes in the last 2 games of the series. Then there he was in the locker room with all the "young" guys smiling, taking pictures with the trophy....and there's LeBron - has both feet in an ice tub, knees wrapped in ice and having ice tied to his back. Wow. I used to feel so sorry for my bald headed freaky looking cold capping process trying to muster some self esteem as my husband tried to help me manage cooling mitts, booties and saving my pathetic hair...after a mastectomy, after a hysterectomy...it's like I did what I had to do then I try to forget it. But seeing this superstar athlete doing the SAME things to his body - goofy looking or not, it inspired me. Tired middle aged wife or superstar prime athlete - the lengths we will go to - to be able to continue to live, fight, perform, as an NBA player, mom, worker. We are all united.
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Hi Ladies, Has anyone had to have blood transfusions for a low hemoglobin? Sunday I feel down the stairs for no reason at all. I landed on my hands and knees but it jolted my back and ribs so now they are sore. My local MO took me off Afinitor two weeks ago due to low blood counts but never said anything about how low things were. Two weeks ago I had a platelet count of 42000 and red blood count was low. Hemoglobin was 8. This week after Memorial Day I had more blood work. My husband came rushing to work to get me to tell me they had a bed at the hospital waiting for me for blood transfusions. I was shocked!! My hemoglobin was 6 which is critical! I had two units, 5 hours later. They think the Afinitor at 10mg brought everything down so far. I'm still weak. So now I'm dealing with Dana Farber to guide this medication. I guess this is just a bump in the road, but now I know why I was sleeping everywhere and for hours. What a terrible feeling. My DH called Dana Farber to get this sorted out. One good thing is that my liver enzymes are down, not sure about TMS. They were getting high as well. My MO at Dana Farber said it could take three weeks to level out then back on a lower dose of Afinitor. I'm just so worried, I know we all have our worries these days. I think I am entering the scary zone.
I hope everyone is hanging in there. It is Spring, I thought things were supposed to brighten up!!
Hugs to everyone.
Anita
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Anita - Thinking of you. Personally, I would press Dana Farber can come up with something other than Affinitor, as I don't feel you are a good match for the drug. It can be very tough for certain people ... and as it is getting to your head, making you worry, the benefit IMO is questionable.
Hugs and total support coming from here, whatever you do. I hope the transfusions solved the immediate problem.
>Z<
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Thanks for the welcome, everyone. After many months of physical misery before my diagnosis and a few months of physical and mental hell after it, I'm still reeling. I'll keep following along here and on the Ibrance topic and the bone mets topic too. I may chime in now and then.
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Good news, ladies. My scan is stable. Even the liver, one year out from y90's, show no uptake. All the other mets in my lung and chest are still active but most showing lower uptake. One in my chest area lymph node is more active. It's funny because I've been having some pain right in that spot. My doc didn't talk about the clinical correlation. When I called, the nurse said, she does not think it's the cancer doesn't know what it is. I don't think we would do anything differently anyway. I'm starting back FI today, it has kept thing quiet and there are no new tumors.
I'm not going to repeat my long rants about my MO. My mind is still "unstable" after the very long, confronting visit on Tuesday. Today, I'm thinking there's no hurry to make a decision. Nobody would do anything differently right now. I only see her every six weeks anyway, no more scans for 4 months, no hurry. So, I'm going to talk to my PCP and tell her more of the recent revelations. Then, decide when to decide. I've often said, deciding not to decide IS a decision. Haha. Besides, more revelations have been revealed every day. Not good ones.
There's more important things to dwell on. My son will take his oral boards (Anesthesiologist) in ten days. He's feeling the crunch. He needs no more distractions from me. He's already passed his written boards and has been working his new job almost a year. It's crucial to pass the test. The last one for a long long time. PTL
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