How are people with liver mets doing?
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Moth I knew about the Zoles...I was actually the one that had mentioned on here a lot in the Ringworm Fenbedazole thread about how my liver enzyems on the human version Mebedazole went from ALT & AST from about 48 and 50 to 280 and 320!! after 5 days of the pills...I didn't realize the full name of the diflucan was a zole (flucanzole)....so that explains it...well too late for today I already took it this morning..and get blood work tomorrow... so I will see how that is... I am still wondering if the Ivermectin will raise Liver Enzymes...we will see. Either way I will stop the diflucan...thanks again for the info.
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Ok, so here is a sticky wicket situation....
I started on Lynparza. A potential side effect is low red counts that could require a blood transfusion. That may not be a problem for me, but... who knows yet. I am going to a MO visit next Monday for my Xgeva, see the doc, and do labs. In case I would need a transfusion, I messaged MO nurse today to ask if I should have someone come with me (I usually go alone--2 hour drive). She said that up to me. I asked about how this would work in the future (not just next Monday). I get my monthly labs done locally. If one of those labs would show the need for a transfusion (anytime in the future) would I have to drive the 2 hours to come into the clinic to get the transfusion or could I get it locally? She said I would need to come in.
How do you that travel to your cancer clinic handle this? Need of blood transfusion or platelets or something like that? Do you travel to your cancer center to have it done, or get it closer to where you live?
I have read on here that some travel 5-6 hours to see their MO.
I will cross post to other Threads.
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Candy- when I needed frequent blood transfusions, my husband drove me to the infusion clinic which was only 15 minutes and dropped me off- there were times my counts were so low I could barely get from the car to the elevator and check in I was so weak. it was covid times and no "guests". if you need a transfusion hopefully you can get it close by, if not, you definitely don't want to drive 2 hours alone. Over time I became more tolerant to really low numbers, but, still would not have driven myself- I was about 5.8 when I got most of mine. The first two I got in the ER which took forever (12+ hours) and was uncomfortable- the infusion clinic was about 5-6 hours to get 2 units.
Fingers crossed you won't need any transfusions- although they are wonderful if you need them
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Nkb- Times like this I wish I had a husband, haha, not. But I do wish I had someone for support. I did message my local PCP with this question and they responded that he may order the blood so I can get it locally. All this is hypothetical, as it has not happened yet. Will have to see IF it happens and how low I am and what the situation is.
Anyone else with thoughts?
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candy, I agree with Nkb that the times I *needed* a transfusion there is no way I was safe to drive. If you need blood transfusions you will ideally be able to get them not too far away and have someone drive you there & back and probably tuck you back into bed or the couch because they usually don't transfuse until your numbers are low and you're really dragging yourself. You might need to reach out to your volunteer community for a driver?
And yes, blood transfusions are done quite slowly too so the whole thing takes time. I think the idea of being able to do it closer to home if necessary is good and I hope you can find some clinic to arrange that possibility.
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So to continue my question--- anyone that travels several hours to their MO, how do you do transfusions? Like Moth said, blood transfusions can be a slow process. If you have to drive 3,4,or 5 hours one way, then transfuse, then home -- do you arrange transfusions closer to home and how do you coordinate that? Does your MO order the transfusion to be given at the closer location? Do you have to get your PCP involved?
This is 1 issue of traveling to go to a cancer clinic. I like that my clinic offers more services than a rural onc-- clinical trials, Y90 options, etc--- but the actual getting the care is hard to have to travel for all this. Especially with being alone.
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Dear all, are here any members that had recurrence in mastectomy scar? My Sandra got a small wound ~5x5 mm ~two weeks ago exactly in the middle of mastectomy scar, after lifting things, and we thought, uhh, it is a fresh scar, so maybe something "broke" and some small infection set in - no other symptoms. Then on Sunday it appeared again after a long hot day outside, and got bigger today. Our family doctor had a look at it yesterday and said "it is nothing" and changed the dressing, but today it looked bigger (like 15x10 mm but not deep) and so we went to our surgeon for an "emergency" check-up. He said ,,hmm... no lumps, no redness but we cannot rule out anything knowing how non-standard your disease is, so we must make sure what happens there". He sent us home and gave us means for wound-care. And so, now our MO is ordering a full body CT scan and a biopsy... dear God, out of blue sky... Our son has just started his 1st grade at school... Has someone probably gone through something like this or heard anything? Please PM me if you know anything... Thanks and sorry it is not about liver mets:/
Saulius
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Candy, I’ve had to have several transfusions. I think it depends on how low your Hgb is. When my doc gave it at 8, I was Okay but when it was 5.2, I could not even walk much less drive. Either way, it would be nice if you could get it locally or have someone drive you.
So, I guess you’ll have to wait until you see your labs to decide what to do.
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Katty, hoping and praying that Doxil doesn’t fail for you. Remind me, have you looked into Clinical Trials? I will start one in October because there was only one option left for me and it hadvery little chance of working. The CT is much less toxic and will let me have the guality of life I want.
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are you talking about your hemoglobin no? I am just dragging and mine is 11. So is it psychological?.
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Saulius, there are a couple members on the main board who had recurrence in mastectomy scar. I will try to find some of that for you and send you PM but might take me a bit. Just wanted to let you know I'm thinking of you and hang in there. Fingers crossed still for minor infection. Hugs
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Oh dear Moth, that would be very helpful, thank you so much... I'll look for these people tomorrow myself but if you got to know someone that would be so good... I am really frightened because surgeon said "it is not usual for a recurrence". Crappy disease... sorry for hijacking this thread again:/ Saulius
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Saulius, No apology necessary for your post on your wife’s scar development. Many things arise in our health (other than liver mets) and hopefully this is a minor one for your wife, but either way we care about you here. Please don't hesitate to post how she’s doing.
Update on my liver MRI report questions. I saw my MO today and asked her about “heterogeneous liver parenchyma” that was mentioned. She said it meant the tissue was mixed in appearance, probably some fatty liver and some changes like scarring from my ablation. She wasn’t concerned there. The “saccral aneurysm at the splenic artery” was something to watch with coming MRIs but the description as small (1.3 cm) and stable made her feel watching was enough. I asked about a third Covid shot and she said since I had Moderna just to wait a while, as their effectiveness seems to be lasting. I’m ok with holding off.
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Hi Grannax, I was in an immunotherapy clinical trial a couple of years ago, but failed within 6 months. There are not any current trials at MDA that would be worth pursuing and I can't travel. and I have extremely poor mobility due to severe neuropathy which would disqualify me from many should any pop up.
I am hoping against hope that I will at least get a few more good months out of doxil and we'll have time to research more options. I'm not giving up.
I'm curious, has anyone is getting near the end of the line ever consulted with a liver specialist for a fresh take? It seems that there would be value in a consult with a liver oncologist since that is literally all day deal with day in and day out.
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Saulius, I'll be thinking of you and Sandra and your little boy and hoping for the most benign reason for this problem. I think I speak for everyone in saying you are never unwelcome on this page and even if you wanted to post a recipe for what you were making for dinner. We love you and your little family.
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Saulius..I must have missed the original post about your wife and the MX scar issues..I pray it is nothing serious!!! Please keep us updated!
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I was discussing on another Thread about wishing I had my MO at my larger cancer center and then having an MO locally to monitor the delivery of the treatment. Someone mentioned a BCO member that gets treatment at MDA (she thought), but then has a local MO closer to home that she sees for her care. We could not remember who this is.
Anyone on this Thread that has 2 MO's -- 1 at a larger center that directs the treatment plan and then a local, closer to home, MO???
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This is my post from the other Thread--
....The larger cancer center MO leads and the rural MO is there for local treatment, labs, transfusions if needed, etc etc. I asked my Palliative Care team about it. They said that having 2 MO's would not be good. They may disagree about how to treat me and that could get sticky if 1 says ___ and the other disagrees. Like 2 cooks in the kitchen. I have asked about if I would need IV chemo in the future. Could the larger cancer center MO order the treatment but I get it locally with the oversight of the local MO. I was told NO. That in that case I would have to transfer care to the local MO if she is the doc on duty when I get the chemo. 1 cannot order the chemo and the other monitor my reaction to it.
So I am told to have my PCP involved. He would order the blood or platelet transfusion (if needed at any point). I would get the transfusion locally under his order. He would be responsible, not my MO that is 2 hours away and does not have privileges at my local cancer center or hospital. But.... my PCP cannot order chemo. Has to be an oncologist. Blood is basic. Specific cancer treatment would not work with the PCP ordering it--- not his specialty.
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Candy,
I have my main MO who is 5-6 hours away and a local GPO who administers treatments at my local hospital. I toggle back & forth between the 2 depending on what treatment I'm on. Right now I'm on a trial that is in Vancouver, so I travel every week to see her & have treatment. When I'm on standard care, I can have my treatment closer to home, though she is still in charge of decisions (with me of course) The travel is difficult especially this summer as part of it is on a ferry which was overloaded on every single sailing. But I am happy to be on this trial, so DH & I are thankful for the opportunity.
cheers, dee
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Hi all. Need some positive thoughts.
I'm in a bit of limbo at the moment as my regular MO is on sabbatical (that's another story - posted my rant on the Steamroom thread). I may have more details soon when I am able to see the results of my recent CT scan but it looks like progression. I've strongly suspected based on discomfort and generally feeling crappy but had a call today from the Cancer Agency indicating the replacement MO wants to move my appointment up (shockingly not until the end of next week - counting the days for my MO to return!). This is not how they roll if the doc simply has a conflict so it’s clearly an issue. (Without going into detail, there are other signs pointing to progression based on the behalf the technicians and my GP’s office.
Not really surprised as I have been off treatment. My MO has been concerned about toxicity to my bone marrow so did not want me to continue with Xeloda. No idea what the new guy will propose….
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Guys, thank you for your support. Checking everything (these forums, dr. Google, etc.) I still cannot find a case that is similar to Sandra's. She is always so "different", so let's hope this time this difference makes a difference:> Uh, I smiled, cannot believe that myself... we have an appointment with our MO tomorrow, so will see what happens.
Dear Saddiesservant, I know what it means to go to another MO but sometimes it is for the better. We, people, do not like change but the guy might be open for other ideas and later share them with your MO. I just want this appointment to happen sooner. Lot's of hugs,
Saulius
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Saulius,
Just wanted to say that I'm thinking of you and your Sandra. I hope your MO appointment goes well and there is a simple explanation for what's going on.
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I won't know if my Doxil treatments are working until October 1st, when I see my MO after my scan and echocardiogram. If there is no progression or heart damage then I will proceed for as long as I safely can, as there is a limit on how many infusions I can have of Doxil.
If it isn't working then I think I need to get out of my safety zone and do something radical because I feel like in a way my doctor has no confidence in my continued survival and only wants to jolly me along at this point. He's being kind and gentle about it but here's the thing.
Unless I misunderstood, he's told me twice that only about 5% of my liver is compromised. I have many diffuse mets in both lobes and lots of areas that look sclerotic. I have two larger tumors that are around 3 cm. I have no pain no tenderness no ascites no yellowing. My liver values have in general pretty much within normal except for once early this summer when things were seriously out of whack. My tumor markers have been in the high 500 but came down somewhat on the last test. I do all of the driving , do light cleaning and cook most of our meals. We have several dogs and cats which I dearly love they also generate a lot of work and I fully do my share of it. So no, I don't think I need to have a DNR and prepare myself for hospice at the moment.
I am very much a realist but I don't feel like it's time to give up the ghost.
I really like my doctor but he is very conventional and not one to think outside the box. Like me, he is in his sixties, and I believe too set in his ways. For example on he has never done an MRI or pets can only CTs. I've been with him for two years since my prior Mo left MDA.
What I would really like for my next step is a referral to someone who treats primary liver cancer at MD Anderson who would be willing to look at my case with fresh eyes for a new perspective. They have a good team of IRs and they offer proton therapy, SBRT etc all of which my current doctor has pooh-poohed. It could be that if I get my referral a new doctor would say there's really nothing they could do, but at least I would have tried.
Does anyone have thoughts on this?
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Katy, I think you should explore all options. Sounds like you have a lot of fight left in you. Wishing you all the best. Be
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Sadiesservant- hate that you're having to deal with a new MO in this circumstance.
Saulius- thinking good thoughts for your Sandra - something simple and easy.
Katty- if you're not comfortable, it's probably time for a new doc, even a new bc MO, if you can't get in with a liver specialist.
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Dear Katty, you say words I want to hear - yes, you are almost a healthy person (believe me, some healthy people in their sixties do less than you do), so no way you are giving up. I think... you'd be very surprised what you could achieve with a pro-active MO. Never forget that you live in the US (do you?), a country with best treatment possibilities. If you could find an advocate who could help you with all the matters (like husband or relative), it'd be great because two heads are better than one. I have no right to educate you on this as you are 112123445656 times more experienced than me but I think your life should matter not only to you but to others too (probably they cannot live without you), so others should help and work for you too. Also... maybe you never mentioned to your MO that you want to outlive him? With your attitude, spirit and amazing body (just look at you - you are an outlier in stage IV space!) you can go far far into the future. I know some doctors who would never do anything if I would not ask... crap, I sometimes see how dependent we are on them when in reality we should not be...
Saulius
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Katy, I think a change would be good. Personally, I am skeptical of any MO that poo poos local treatments. That is my opinion based on my experience. So, yes. I know it’s out of my comfort zone to change MOs, especially at the same Center.
I have found out that IRs give very straightforward information. I’ve never been to a liver specialist. I think you’ll still need to have an MO. They usually direct traffic.
Doing the uncomfortable in your situation is done all the time at a big center like MDANDERSON. Go for it, girl. Your MO should not be offended. You could just say you want a second opinion. Then you could see how much you you like the new one. Or you could demand a referral to an IR. The ones who do lots of y90s know the liver better than anyone, I think.
Ohionana. Yes, I was talking about hemoglobin. Eleven is a good number but there are other things that can make you fatigued. Have you had your iron tested? I forgot what chemo you’re on. It can certainly cause fatigue.
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Thanks everyone for the encouragement! There is a lot that I like about my MO and we are very sympatico on a personality level but I do feel like I need to explore localized options post-Doxil and my MO just shakes his head at every suggestion I make lately. Like Alabama Dee, my tumors have neuroendocrine features which is very rare but he pooh-poohed that information as well.
Saulius, I am in Houston and am a patient at MD Anderson so I feel that they have a full range of options if I seek them out. I have a wonderful husband who follows my lead but who has also been pushing this summer for me to get a second opinion either at MD Anderson or another Cancer Center. We shall see what happens after my upcoming tests.
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Kattysmith, I just want to add my voice to encouraging you to get a 2nd opinion....no matter what the scans say. I was chatting with a researcher recently who was suggesting that the time to hit hard is when things are good - because you have a window of opportunity for eradication. It's just his opinion and he's bench not clinical & it's not evidence based or tried in RCTs but I kind of see his point.
How many chemos have you been on? You might be able to cycle back to something you used earlier. You might be able to cycle back to a CDK4/6 inhibitor because I'm sure I read on this board that that resistance can sometimes disappear and the drug works again. Also, metronomic therapy, plus the possibility of a locoregional treatment should not be off the table yet - not if you're otherwise well and with a relatively small tumor burden.
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Help please!
Abdominal MRi today indicated "innumerable hepatic lesions demonstrating enhancement and restricted diffusion consistent with hepatic metastatic disease". Is this as bad as I think it is? Mets dx mid 2015. Bone only. Have recently switched to Verzenio after progression on affinitor. I have held my breath for 5 years praying for no organ involvement. Looks like I may have run out of luck. Havent talked with onc yet....I pulled this info from my portal today. Will a biopsy likely be next!
Thank you all for your thoughts and opinions
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