How are people with liver mets doing?
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I went almost 5 years on Xeloda at NED in my liver. It can be s great treatment if you can tolerate it.
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Leftfoot- what was the dose you took for Xeloda?
Raven
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raven- I was misyvat 3500md/day but went down to 3000 my while I was also on Tykerb.
14 days on, 7 off cycle.
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Nov 22, 2018 12:15PM - edited Nov 22, 2018 12:20PM by Cure-ious
PS Love the mom stories- my mom is not inclined to swear, but you can tell she's losing it when you hear "Hell's Bells!" No idea where that phrase came from; never heard it from anyone but her.
Cure-ious, my Mum has been known to say "Hell's Bells!" as well. I thought you'd like to know yours isn't the only one.
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HLB-my port was fine using the same day. I had twilight sedation which is Versed and Fentanyl. I had no problem until a few days later and it felt tight. Not sore just uncomfortable.. The skin stretched and felt fine after a few weeks. I still hate to touch it.
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Griff thanks for info on using the port. I had the same sedation. It's a little sore and if I chew the wrong way I get a sharp pain at the clavicle which is hopefully just soreness that will go away. It sticks out a lot because I've always been scrawny in that area.
I wonder the same thing with the new liver problem....is it the beginning of the end? I do know people have stopped them for a good amount of time though. Like raven. I wonder after so many treatment if it's possible for me to ever get 5 years of anything.
It seems some doctors are on board with local treatment and others (like mine) are not, and any time it's brought up he says exactly that....its a blood borne dz. I still think it can be helpful in a lot of cases. Look at grannax! I had it for two bad spinal lesions and it did cure those, with very little possibility of coming back in those spots. My oncologist was against that but I did it anyway. Getting ins to pay for such things is even harder than convincing the doc to do it. We have to find out about things here, then find someone who does it and bug the heck out of them! Many times it involves a o lot of expense traveling etc. I'm very lucky that I have parents that will not hesitate to help if it comes to that.
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Oops I meant it was leftfoot who had Xeloda for 5 years. Sorry!
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Hell's Bells is a really old expression; I know I've always heard it / read it, and I'm 66. I looked it up and some sources say it came from around WWI, possibly from sailors, and the whole curse was "Hell's Bells and buckets of blood." More common in England. I love words, and the origins of phrases has always fascinated me!
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Hi
Funny to see the hells bells. I say it often. It always reminds me of a old ACDC song .Good to know the meaning of the term.
Love hard rock now I crank it whenever I can and dance around like a fool lol. The tougher the better.
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Hello everyone ! I just had to join in since my mom's cancer had returned again and had spread to the liver. It's been a rough year for me with my dad having a stroke and just a month ago, my mom learning it had metastesized into her liver. She was diagnosed back in 2014 for a stage 3 and went to stage 4 and had her a left breast mastectomy. We initially thought she was "cancer free" after a long radiation and chemo therapy. They did see a small build up back then in the liver but gave her Kisqali and Arimidex so it wouldn't build up to anything. This back in 2016/2017. All her test came good . So she continued working as a housekeeper at a hotel full-time. It is a difficult job I wished my mom stopped doing. So fast forward just last month, she had to call in because she felt bloatness in her stomach. Went to the hospital thinking maybe it was just fluid buildup and come to find out, there are already tumors that spread out to her liver. It gutted me. Physically, mentally and financially, it was a rough journey for us on her first time learning of her breast cancer back in the day. But this was worst as it something that she will live with the rest of her life. So we had to talk to our Onc and told us her cancer marker "went up a bit" and it seems it was not responding to kiqali and arimidex anymore. They prescribed her Exemestane and Afinitor. I read both about it before her taking it and afinitor seems like the scary one for me. I think both really had a side effect on her. Constant soreness, uninterested in eating the constant coughing. I'm amazed she did not puke yet or anything. Last week, she was rushed again to the hospital 2nd week in a row because her platelets keep dropping. They gave a platelate transfusion and it went up a bit again. It seems she was also coughing up blood and had nose bleeds. We initally thought it must be the afinitor doing it and come to find out it was actually a blood clot in her chest that came from her legs. They gave her a tube to her leg and was supposed to give her a a blood thinning injection Lovenox. But, it seems her platelets keeps going down. The doctor in the hospital blamed it on the cancer but reading some people here it must be due to her chemo.
We have an appointment with our oncologist tomorrow and would love some people's opinion on it. She feels a bit of pain on her liver side again and do feel sad looking at her in her bloated self. I am scared that them stopping her chemo is bad but they have to take care of the platelets first.
I'm just scared and It's hard to just look at her this way. We asked if there is any progress but they said we have to wait for 3 months till we know anything is doing good.
Reading this forum, it's great to hear people surviving past the 5 year mark that they mentioned. It lessens the weight on my shoulders reading you folks' stories and would love my mom to see me get a house, grandchildren and so much more to return to her hardships throughout the years.
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Aadd24...
1st I just want to say that I'm sorry you have to be here. I'm fairly new here myself, but these ladies on this forum are so well informed. Your moms story sounds very similar to mine, I was stage 3 and thought I beat it. I was on arimidex/zoladex since 2016. Went to the hospital with some bloating, I thought I had appendicitis or I was septic. That's when they found my liver mets.
I'm not familiar with that chemotherapy, it sounds like they're doing everything they can to get her symptoms under control and I'm hoping the oncologist can shed some light on this for you tomorrow. It is frustrating having to wait several months, but the 1st three months for me went by very quickly. I know it seems like it's forever, but that 1st scan comes up quickly and then there's anxiety over that 💜
I don't know what kind of cancer your mom has… if it is estrogen receptor positive, I'm assuming it is since they had her on an AI. There are so many treatment options for estrogen and progesterone positive cancers. Quite often they start us off on chemo to get things under control and then I've seen a lot of women, depending on their clinical situation, get switched over to hormonal and targeted therapy.
I had also never heard of something called Y90, it is done by an interventional radiologist… basically they go into the liver and treat it from that angle. I'm personally researching that and looking into an interventional radiologist for myself, Despite the fact that my oncologist does not seem too excited about it. I've seen a lot of women on this particular forum have wonderful results with it and if I've learned anything in this journey it's that you have to be your own advocate. Start doing research and asking questions now… sometimes something you mention in the Room can change the course of treatment.
I'm sure one of the more Informed ladies will chime in soon. But know that we are all here for you if you ever need to ask questions or just vent. Sending you and your family hugs and love
Jenna
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Great to hear your response and it's great to be here actually. My mom always wanted us to focus school so when she had her breast cancer back in 2014. She told us not to worry and focus on our studies. Now that I am almost graduating college. It's hard especially since It's just me and my mom working. Hopefully soon my sister would be able to help us financially since she is with her husband stationed in Italy.
I'm just worried about the bloating or that swollen abdomen. She has a hard time breathing. Now, my worries are on her constant visit to ER to get her some platelate transfusions since hers is dropping for some reason and she has blood clots. They were supposed to give her an injection medication for the clothing she had to take home but the doc hesitated because her platelates are dropping again. I always thought it must be her medicine. I just hope it is the chemo that's dropping it. If this bloating disappears or gets smaller, I think she'll at least be better. Afinitor + Exemestane combo seems like too much for my mom so hoping for a more manageable combo for her.
Hoping for these transfusions to end too. Feel bad for her going to the hospital. Hopefully it is only temporary cuz of her medicine.
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Hi all, I am now a little over two weeks post SIRT or Y90 for you American ladies and so far except for feeling extremely crappy the first week and a bit, I am feeling well.
Back on chemo as of today but just Carboplatin for now until my liver heals. Anyone been on this and had total hair loss? Just got my eyebrows back.
Bloods today looked good. Bilirubin still perfect and GGT which got up to 1000 is down to 642 so I am happy with that.
Saw my normal radiation oncologist the other day and even he couldn't believe I had full Liver radiation at once including an extra dose for my special 3rd artery. I really trust my IR he was very informative and honest. PET scan in a few weeks so we shall see.
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AAdd, everyone here was a newbie at some point. I've been here almost two years. I've learned a ton of stuff. It's a good place.
You must be young and your mom in her forties? I was 44 when I had my first DX. I'm almost 71 now. But, I didn't have liver mets until 2 years ago, scariest thing ever.
I did have radioemboliztion y90 in. Me at of 2017. It worked for me. Your mom his probably too sick right now. With have not been on those meds yet but probably will have them at progression. They sound terrible.
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Aadd I hink you are right that affinitor is too much for her right now. I think it's one of the hard ones and something different might be better until she gets over thsi hump. Does she have fluid in the abdomen? If so maybe they can tap some of it to at least help her breathing and comfort.
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AaDD- Thanks for writing in for your mom you are a darling daughter! Your mom seems to have responded well for three years to CDK4,6 inhibitor plus an AI, and now needs close attention and a second opinion, for sure! You should research other options she might choose, including moving to a different, stronger CDK4,6 inhibitor (Abemaciclib) and Faslodex, for example. Halaven is used at later stages and is also very strong on liver mets. Her cancer should be tested again, if that did not already happen, and she needs to know if she has a PI3K mutation or an ESR1 mutation. For ESR1 mutations, there are clinical trials using SERDs that preferentially degrade the ESR1, and in combination with a CDK4,6 inhibitor or other combos- plus, if she was not tested, it is possible that the cancer mutated to another subtype like Her2-positive or triple-negative, in which case the anti-estrogens like she is taking aren;t doing anything. Please don;t worry too much about the time that elapses between treatments, its more important to get her onto something that works and the testing route is actually the fastest way to try to ensure that...
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Aad24, welcome to this forum. Honestly, Afinitor (aka aphonytor) works for a very small percentage of people after failing another hormone therapy. For the 3 months I took it, no one in the Afinitor thread in this forum seemed to be having any luck with the drug except one person. I would recommend looking into chemo - Xeloda is a pill that doesn't cause hair loss and I found it much more tolerable than Afinitor/Aromasin (exemestane). Chemo is a bit more aggressive to knock back liver mets and ascites (fluid buildup in the abdomen). Abraxane, Halaven and Doxil are also potential options for IV chemo. And there are others. I have taken Abraxane and am on Doxil now and haven't changed my lifestyle in the 4 years since liver and bone mets diagnosis - still work full time and no one knows I am stage 4 and undergoing treatment. I was not aware that Afinitor caused low platelets. Certain chemos can do that, such as Gemzar, but I wasn't aware it was a big problem on Afinitor. Does your mom have bone mets? Often, low platelets not caused by treatment are caused by mets in the bone marrow. If you treat those mets, the levels improve. Good luck. This is all scary and awful but we have a wonderful group of supportive people here and all hope is not lost. I have been living with very extensive liver/bone mets for 4 years. Liver mets tend to be aggressive following an Ibrance failure (in my anecdotal experience with my own Ibrance progression and the experience of others on this website). The cancer finds a workaround that is a more aggressive pathway. Additional hormone/targeted therapy combinations work for some but once you are dealing with aggressive progression or ascites, chemo may be the best way to go to get the cancer under control.
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Had my first abraxane yesterday and feeling fine so far. My weight went down 2 lbs in one month, which is the first time it has not gone up since may, so I think maybe the lemon juice and liver supplements are working. When I got home the oncologist called me and said he is going to discuss me with a liver specialist that I got choose, finally!! He seems to be looking over my report and blood work a lot more thoroughly and in the end decided it's probably rare but worth talking to hematology. Not sure what he thinks is rare, but I think he means treated disease looking lie cirrosis. Spent 6 hours which really gets on my nerves after awhile, but everyone was wonderful. Chemo nurses are always great there. They baby me which I like. If these ascites go away I will be happy and feeling normal again.
Aadd I think what curious said is exactly right and good info from JFL too. Best wishes to you an your mom.
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So we just came back from the onc yesterday and see how this blood clot issue should be resolve and how her medication should continue. It seems she has to take lovenox (injections one a day) for the next 3 months and also continue her afinitor/aromasin combo. They lowered her afinitor dosage to 5mg and see how that works.
Hopefully not as prominent of a side effect can be see. After this.
Mom is still coughing but probably cuz of the clots on her chest
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I am glad they reduced the affinitor. I hope she feels better after that. My uncle had a pulmonary embolism from a leg dvt. They resolved it with some kind of IV anticoagulant and then he had to take pill anticoagulants after that.
They probably have already done this, but they should make sure she doesn't have pneumonitis from the affinitor. It's a common side effect and I'm pretty sure if you get it they take you off altogether.
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Was going to get my second dose of Havelen today, but my Lymphocytes are down to 0.7. TBH I was feeling rotten from the severe dehydration - which came the day after my Havelen dose - leading to high heartbeat and v low blood pressure. I had a big dose of Saline via IV today for that and I must say I'm feeling very much better (finally treatment that makes me better not worse). I describe it as the heavy cloak being lifted. May not last for ever but I love it for now. Doesn't help the fact I can't have chemo but I' m so happy to feel better. I had a shot (Filgastim-SNDZ 300mg (Zarxio)) to raise my lymphocytes, and getting another one tomorrow. Then WBC on Thursday and hopefully chemo Friday. Both my MO and I don't want to miss a dose and allow the cancer to grow more. So frustrating
I using Biotene rinse for dry mouth and its really great (first dose that is) I am still eating like a baby bird - or you could say now sparrow or owl as my niece suggested as I'm feeling a little better Fresh Orange juice is great for my nausea also sparkling water (not together) Im going to try some Ensure chocolate shake tonight to get some nutrition down me. I think its not just the dehydration which would stop anything, I think think this is the liver issues. I'm getting the strong pain back (that needs medication at least twice a day) I'm using 10mg Hydrocodone as this is a great drug for me (though I know not others) All these shenanigans bring crazy constipation - which I hope will finally bog-off once I start eating more - as its getting enough medical help to move a mountain!
Sarah
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I don't get on here much due to my crazy schedule. Thought I would say help and post an update.
My recent scan was characterized as stable BUT they saw something in my kidney for the first time. It is small and the radiologist who read my scan this time thinks it was already there before. It was never reported before. He also thinks it is a cyst rather than a tumor. This does not give me much confidence given that they originally thought my liver lesions were cysts rather than tumors. Anyone had something like this happen? If it is spread to the kidneys, that seems to be relatively uncommon. I don't hear often about kidney involvement. No change in treatment for now.
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It does sound odd. Since it's not a common place to speed I think I wouldn't worry TOO much. My recent scan says atrophic shrunken kidney and "resolved previous hydonephrosus" but the previous report said normal kidneys. It's frustrating. Idk if it's bc different people read each scan or what. My oncologist would prob say the same thing, no change in treatment, and then if it resolves or gets better we will know it was cancer.
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Thx HLB. Glad to know I am not the only one!
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Hi liver mets friends. I usually have CT/bone scans every 3 months. Currently, I have stable scans. My next scan appt date is January, but my MO is changing it up and ordering a liver MRI. I will then switch to CT/bone scans every 6 months with liver MRIs alternating every 6 months. She said it is the liver she wants to keep carefully monitoring. I have never had a PET scan for my specific situation. Anyone else do routine liver MRIs alternating with CT/bone scans?
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Oh..I forgot to add that I am meeting with a Radiation Oncologist in December to sit down and go over questions about my scans and ask questions on potential treatments if measurable liver mets start to appear.
I asked about meeting with an Interventional Radiologist, but at my hospital, the IRs focus on daily procedures and only meet with patients who are scheduled for procedures.
I am gathering info while I feel good.
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I usually have pEt scans. The only time I had MRI was for rad oncologist to the spine. I could see why he wanted it because e showed it to me and the spine was very clear and detailed. It was sbrt which was very precise.
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I haven't had an MRI for mets monitoring yet but do hear they are very sensitive and detailed. The only challenge for you may be trying to determine progress/status due to alternating different types of scans. For example, if you see more mets on an MRI is it progression or simply a matter of the MRI being so much more sensitive (and vice versa when you receive CTs - have the lesions shrunk or is the test just less sensitive).
I get PET/CTs. When I had my Y90, the IR did a SPECT which is apparently very sensitive and showed a lot more tumor volume than the PET-CT. It had been 3 months since my PET and we didn't know whether my cancer had grown or whether the SPECT just picked up tumors the PET-CT did not. Also, early on, my MO tried to alter PET/CTs with CTs after a few good PET scans, moving my PETs to every 6 months and doing a CT at the 3 month point, but it failed miserably, led to missing a major explosion of liver mets brewing when I had a plain CT and was scrapped after trying it once. For me, the CT plugged in at the 3 month point ended up being of no value because it was not comparable to the PET/CT and I didn't have any previous CTs against which to compare it.
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Hi Ladies!
I have a question. I am getting infusions of Carboplatin every three weeks. I have one that should be scheduled on January 11. Problem is that I will be traveling. My doctor says it is too complicated to set up an infusion at another location (I will be in Cleveland). I am on Medicare so I don't think insurance coverage would be a problem, but she feels that a doctor in Cleveland would want to meet with me at least a few days beforehand, and I will only be there for one day...long story. Have any of you had experience of setting up something like this. I know I will be running into this problem again over the summer when I will be (hopefully) doing some extended travelling. Thanks!
Donna
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Sound to me like laziness but I don't know anything about it. I do know some people have a local doctor and a doctor at a main Cancer Center and treatment is coordinated between the two.
I would get in touch with the place you want to et the treatment and ask them how it works. I get that things can be complicated but if he would simply communicate with the other doctor I'm sure he's smart enough to get it.
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