How are people with liver mets doing?
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Thanks to all of you for the replies and good advice. I started a pretty Nast email to him, then got so mad I had a crying meltdown and took a break. Then I made the email a bit better. I didn't call because the last time I did that it was 5 days til he responded. I told him that I am feeling more threatened every day and the last time it was 2 months and I cannot wait that long in this state of mind. And I said I needed some Ativan.
Bubble that is ridiculous to wait 5 weeks simply for blood results! Glad you put your foot down.
I do think long and hard before complaining because I don't want him to unconsciously not treat me as well. But this takes the cake.
Tennille thanks for that info about milk thistle, I did not know that. I am also taking NAC which turns into glutathione in the body. And alpha lipoic, all of which are supposed to help the liver. And just started doing baking soda/lemon water in the morning. I feel like I'm going to turn yellow any minute if I can get this cleared up and I don't even know what it is. My phone changed your name to Fenicle haha.
Funthing you are right, I am listening to my instincts this time. I will hear from him tomorrow or find somewhere else to go. I sent the email late in the day so I will give it til tomorrow
When we decide to switch treatment I stopped Xeloda but I'm going to start again tonight and pray it doesn't make the liver worse.
That y90 sounds harsh! I am so wimpy about pain and side effects. I hope it heals up quickly.
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JFL, I have never had a port but my veins are so bad I think I will be better off. I certainly could do one or two before the port if need be. When I had 8 treatments for early stage they wanted to give me one. I refused and it was fine. But that chemo ruined the veins for good and every time they take blood it's from the hand. I work with medical records and I have seen that they give people ports for only 4 chemo treatments! That is ridiculous and a money scam imo. Most people are not going to question it and just do it.
That was 2005 and care has gotten noticeably worse since then. Not just that dept but the whole hospital. It's really sad and most of the Dr's don't like it either.
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HLB, the SIRT (Y90) procedure was actually pretty cruizy. I wasnt sedated and spent the time chatting to the staff. The IR that did it is actually one of the best and amazingly open and honest. I spent 20 minutes asking questions both at my planning procedure and on treatment day. He did say I would feel crappy but I guess I wasn't prepared for how lethargic I would actually feel. Two things I have found out are: The reason why bowel cancer has this treatment more than others is because it only has 3 chemo options unlike BC that has many and because BC has so many and this procedure is so expensive it is often not offered or used as a last resort.
When this became an option for me the first thing I said was I would rather have it now when my liver function is good than later when it's too late.
As I am in Australia, cost wasn't an issue for me as my treatment was free under the public health system. I know you ladies in America have issues regarding treatments and costs that we dont which is very sad.
I am concerned about doing chemo too quickly after the procedure though. Those of you that did. Did you find side effects of chemotherapy harder to manage?
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Yes, we do have costs to cover here in the U.S., some more than others. I'm old enough for Medicare so mostly I don't have any or little co pay. But, before I turned 65 I had plenty of costs.
Did you know that y90 was first done in Australia? Maybe your docs have more practice than our docs? My I R is supposed to be the best in Texas, not quite as big as Australia. Haha.Since I've been MBC, I've only had Ibrance and Letrozole. I did continue TX through y90. So, I don't have experience with real chemo and y90. I know one lady here who has. I'll try to remember her name.
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Grannax2, I actually found out the other day that the microspheres were developed in Perth which is the capital city of Western Australia. We are the largest state but get the least recognition for what we actually achieve.
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Funthing, I agree as well!
I am getting a blood transfusion in a few hours for the low hemoglobin/anemia due to Doxil. When I think of my day, it reminds me that people have no idea what we are going through (for which I take full responsibility as I don’t share my dx). This morning, I dropped off my son at preschool, stopped by the cancer center to have the “type and cross” blood matching test on the way to work, will leave work a few hours early to have the blood transfusion on the way home (during which time I plan to do work on my computer - I have to finish up some matters before my vacation later this week), I have a Board meeting teleconference this evening after the transfusion and then I will be back at work in the morning. If I don’t feel up for it, I will pass on the Board meeting though. We just never know what people around us are going through and looks can be deceiving. I will receive 1 bag of packed red blood cells, which I believe is on the smaller dose side. I am hoping it will raise my hemoglobin, ease my anemia and make me feel better. I didn’t realize anemia can be so severe. I am going on a Caribbean cruise on Friday and it will be nice to feel better on the cruise. Given that Doxil is working, or appears to be working, I am hoping to stay on this med for a long time. The side effects are mild (other than this anemia) and I generally feel better than I have in a long time.
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Tenille, now that you say that about microspheres being from Perth, I do recall the IR saying the spheres used in my Y90 were flown in from Australia for the surgery!
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JFL... I had that feeling the other day, That our lives are so far from normal and nobody really knows what we're going through.
Normally I would have gotten my chemo towards the end of the week and Monday and Tuesday's my son would have went to aftercare at school bc I usually felt awful. I didn't get my chemo because they've switched me over to hormone therapy and targeted therapy which is great. I did have doctors appointments that day but I told my son I would let his teacher know if he needed to go to after care. But my little six-year-old was so used to going that he just went. Part of me is proud of him because he took it upon himself to know where he usually is. Part of me was so sad that he had to remember that at all. But when I walked into the front office to get him and explain to them he never needed to go to aftercare and ask if they were gonna charge me for the day… I got all sorts of attitude and the run around for 15 minutes, Before the condescending remark that I should make sure that my child knows where he needs to be. I kept my cool but I felt like reaching over and shaking the woman! I don't know why people need to be reminded to be kind to others, it's been said a million times but it's true… you never know what somebody else is going through. I wear wigs and make up so it's the same with me, nobody really knows unless I tell them
I also want to say… you are superwoman! I got exhausted reading that
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JFL and Bubblebeard-
I think you are both superwomen!!! JFL- It exhausted me to read about your day. Bubblebeard- I admire you for raising a family while going through all this. I have no children.
Isn't is strange though that we "hide" our situation from others. In one way, I see wanting to look and act like everything is the same as before our diagnosis. And some people are more quiet about their personal life than others. ( I don't mind letting people know that I have MBC. I work in healthcare so I talk academically about my diagnosis.) But are we doing a disservice by not letting others know what we are fighting and that it is a fight? Does it portray that MBC is easy, that we don't hurt, get fatigued, or are scared?
Please don't take what I am saying wrong. I love that we can continue with our lives, family, careers. But we are different from before our diagnosis. I am different. My views, priorities, wishes are different from before. I have cancer and I am in a battle.
Bless you JFL and Bubblebeard and all of us for living despite our daily fight in this horrid battle.
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Most of the wig and make up is to make myself feel better. It was much harder for me to lose my hair than it was to lose my breasts as weird as that might sound. And I feel so, for lack of a better word , naked without my eyebrows and eyelashes
Another is that my six-year-old son is having a little bit of a hard time dealing with the change in my appearance again. This is the 2nd time we've been through it and hes older now. His friends are asking him questions that he can't answer. When I go up to the school I almost always look "normal". If I'm tired or I don't feel like it I have no problem just going out with a hat on and no eyebrows lol. But just to make his life a little easier, I do tend to not be so open about it at the school.
And that is different for every family, some kids handle it better than others. My son has his own special issues
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Candy, yes, there are certainly benefits and drawbacks to both sharing dx and keeping it quiet. It is a tough decision either way.0
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Hello ladies,
So I had my carbogem chemo today and my onc said my liver felt small and soft. Says the chemo is working and said I don't need a scan. I have not had one since July. I am okay with that. My counts were pretty good except my hemoglobin is 9.6. Anyway, I got my liver panel numbers back and I am concerned because my alkaline phosophate went up since Oct 11 to 257 and my ast is 62-it was normal last time. He is not concerned and wants me to stay the course. The nurses said it was not anything to worry about. They said I have a lot of toxins going through my liver. I was in the hospital twice this summer-and my liver was in bad shape. I never had any symptoms. What do you think? Any insights?
Lisa
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I've often thought about how this would be different if I didn't have my son. Most of those thoughts come from guilt as possibly leaving him much too soon, despite the fact that women are living longer and longer with the diagnosis. I think I would be a lot more open about it. So much of what I do is to continue a sense of normalcy for my family, a lot of it's not really for me.
At the same time if I didn't have my son I don't know if I would be as strong.
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Grannax-Great video! Love the pics of you and your family too!
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JFL- what you said about our lives being so far from normal really resonated with me. I spent 5 hours at the chemo center today and then picked up my 3 kids from school, shuttling to practices, getting homework done, and dinner and dishes. I think my husband thinks chemo is a breeze because I've been lucky to have little side effects, and continue to do much of what I did before. But even with little chemo side effects, I'm not the same physically and emotionally. He doesn't quite get it.
Only a handful of friends know about my Stage 4 diagnosis, for a few reasons. For the most part I amchoosing not to tell people at this point. It's been 3 months since my mets diagnosis, and it's hard for me to talk about it to others, I'm having a hard time accepting that this really happening, but I'm slowly getting there. With my first diagnosis, it felt like everyone knew. Some avoided me because I made them uncomfortable and they just didn't know what to say. I really found out then who my friends were.
I was very active at my kids school, and my kids have asked that I notdisclose my diagnosis there. The last time I went through this they had to field a lot of questions from well-meaning teachers, friends, and parents. They don't want to have to do that now, especially not knowing what to say about my having a mets diagnosis. They see enough of what I go through with cancer at home, so I don't want them to have to think about it when they are at school too.
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Hey Lisa, I'm not familiar with that particular chemo but I can tell you that my liver enzymes jumped up when I started my chemo as well. My alk phos has always been high for some reason, they said that could be a general marker for inflammation also. But my ALT and AST went up and then what came back down when I went off the chemo.
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Candy - I also think there are pros and cons about how much and what to disclose about MBC. I had also worked in healthcare and healthcare research and am a big proponent of sharing experiences so others can learn. But my biggest priority right now is my 3 kids. They know I am terminally ill, and it’s a lot for a kid to have to deal with, and I’m just doing what I can to help them through this
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Lisa...I'm on gemzar and taxol. Your numbers don't look concerning to me either. I've had normal ALK Phos levels, but my AST and ALT have gone up to 100 with the chemo and come back down to normal. My MOsaid the Gemzar can do that. Gemzar is known to raise liver enzymes in some people She said the number to watch is bilirubin and if that's not rising, Im doing ok.
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In my experience it seems better to tell everyone because I have never experienced any weirdness or avoidance. That's just the way I am, an open book. I know that's not for everyone and I also don't have kids or it might be different. My nephew was 6 the first time I got cancer and I simply told him I had cancer the medicine would make it better but also will make me bald. So it wasn't a big deal to him and he would tease me. One time he had a friend over and she said "why don't you have any hair?" And just stared at me with big eyes. He said "she has cancer" just matter of factly. One time we were at my uncles for a family get together and they were having a sing a long. Well he got bored and started tormenting and suddenly he pulled my wig off and siad "hey everyone! Heidi wears a wig! She's actually BALD!" Omg I laughed so hard I was crying and everyone just got quiet and mortified! He was such a joy as a kid.
So the nurse coordinator was back at work today. She called and said she saw some orders in my chart and did anyone call me to schedule anything. I said no, apparently everything comes to a standstill when she's off work. So I have an ultrasound of the abdomen this Thursday. I also looked up the info of the liver specialist I want to see and have that ready just in case. I was actually going to call him for an appointment if I didn't get a call today. Feeling a lot better now. I get so mad when I don't get called back that even something minor will become the biggest problem in the world. I found this morning that the baking soda/lemon juice drink in the morning is a very good cleanse! I started it Sunday morning. I'm going to continue indefinitely unless I find out its bad for some reason.
I hope everyone is feeling good today. I am keeping y90 in the back of my mind. Just in case I ever need it.
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Lisajo - glad to hear that gemcarbo seems to be working for you. It worked great for my TN liver mets. I was diagnosed with 2 liver mets in January, started gemcarbo in February and by April they were NED by PET scan. July and October scans were clear as well, so I stopped gemcarbo. My LFTs (AST/ALT/ALK P) all were elevated during gemcarbo (Peaks were AST 102, ALT 76, ALK P 140). I stopped all my supplements and they came down, so I started adding supplements back in again. I go in again later this week, so will be interesting to see what LFTs are now that it's been 4 weeks since my last chemo. Hoping they are back down and that we can attribute the higher LFTs to the chemo!
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I too am on Gemcarbo but Onc is going to take me off the Gem whilst my liver recovers from SIRT (Y90)
I think for me the hardest thing as a parent is not the loss of breasts, hair or eyebrows (although losing eyebrows really does suck) Its the days when I am feeling really rough and I have to rely on my young adult daughters to take care of their brothers and sisters. It's the parenting from my bedroom where my brain wants to get up and do my job but my body wont co-operate. I wont get those moments back again, even if it's just the simple task of cooking a meal for them or sitting together as a family at the dinner table. I feel like I am failing them because although I can provide emotional support and love I cant always do the physical stuff.
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Tennille... So much yes! You just described exactly where my darkest days have been. When I had to rely on someone else to take care of my kid for his very basic needs. In my case it was my mother, as I only have one small child with no older siblings. But I spent many hours crying listening to him out there playing and running around while I laid in bed. I'm hoping being on hormonal and targeted therapy will make my life somewhat more normal. Sending you hugs all the way to Australia . I bet we're both doing a way more awesome job than we even realize 💜
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On another note, I am going for my 2nd opinion tomorrow with who is supposed to be a really fantastic doctor in Tampa. I'm going to be bringing up the Y90 again. My doctor at Moffit kind of blew me off and I feel like this could be something that would help me a lot. I have a very large tumor, the only active tumor left after my last pet scan has decreased in size quite a bit but it's still around 10 cm. I don't know if the size of that tumor would be a bad thing for the Y90 but since all my disease is in the liver right now I don't see why we shouldn't go for it. So fingers crossed he can get me in to see an interventiomal radiologist at the very least. Even if I end up staying with my current doctor I need to talk to a different radiologist.
The reasons that she gave me for not being a candidate, having prior mets to very small places in my bone and inflamed lymph nodes on my previous pet scan, was why I could not have the Y90. Like my life is less worth it because I had previous mets. Not to mention I know that's not correct... i have seen so many women on the site who have had this procedure done with other locations of metastasis. I'm getting more and more comfortable being the pushy patient. And if I have to that's what I'll do with this.
You guys are all a bit more experienced than I am. I know I need an interventional radiologist to do this for me. Any tips on what I could say or how to bend these people to my will lol. I know I'm not a doctor and I know I should not be coming up with my own treatment plan. I have just lost all faith in this oncologist that I have. She didn't know the very basics of the hormone medication, stuff I knew from years ago. She also has absolutely no urgency. I have a 10 cm mass that I can feel sitting under my ribs. Feels like there's a softball under there and she's like "OK… I'll see you back in 5 weeks after some more hormone testing". I'm ready to lose my mind
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Bubble, there is a doctor at Shands in Gainesville who will do SBRT if you have limited Mets. I had it done to 3 spine Mets. I had others that were not active and he didn't count them. He's trying to go for cures when there's less than 10 Mets confined to one organ. His name is Paul Okunieff. I traveled from PA to get it and stayed at the hope lodge for free. It was 5 treatments, one per day for 5 days. I am dissatisfied with my oncologist too and he of course was against it but I did it anyway. The people at Shands are all unbelievably wonderful. The whole thing was very organized and non frustrating compared to what I'm used to. There is no income requirement for the lodge, you just get to stay and you can also have a caregiver stay with you. Unfortunately it was a short time before new bone Mets popped up, the ones that were treated are pretty much guaranteed to not come back, unlike regular rads that are mostly for pain reduction. The only problem I can think of is that one lesion might be a little bit too big, but I don't remember the exact cutoff. I have pic of doctor Okunieff in my cubicle. He is my hero for actually caring and being willing to try! For most of us we won't be cured, but there's always a few lucky ones. He cured a man of lung cancer who was completely given up on. Last time I saw his video he was 8 years from the treatment. If you search his name on YouTube there's a few videos.
Good luck at the 2nd opinion. If they are unwilling to send you to an IR I would do a search for them and call them yourself!
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If the tumor is too big I think there is something called chemoembolization, also done by an IR. I think it cuts off the blood supply to the tumor. I have found that if a certain facility does not offer a treatment, they will not even bring it up as an option. For example my dad had prostate cancer. He went to a urologist at the same place where I am treated and he was offered radiation or invasive surgery. The DaVinci procedure had been around for years but they didn't have a machine so it was not even mentioned! That is a hug difference in outcome from surgery, one of which is the difference between wearing diapers the rest of your life! I was going to a holistic doctor at the time who had it done and told me all about it and knew where to go for the best doctor. Dad ended up choosing radiation but that kind of thing really makes me mad. We have to look into everything ourselves. Then they want to tell us to stay off the Internet as if we are idiots and can't tell the difference from good inf and bad.
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Bubblebeard...I have 50% involvement in my left liver lobe. Stable but widespread bone mets, ovarian mets, tumours in left breast and brachial plexus. I had no issues regarding anyone wanting to do Y90 treatment on me. In actual fact it was my Onc who suggested it since although my bilirubin was perfect my GGT had gone up to 1000. When I had my mapping procedure they said I was a good candidate with a very low risk of liver failure as the contrast went only to the affected areas of the liver.
Now it's just wait and see what my liver does whilst getting on a chemo that keeps everything else still stable.
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I think I owe you all an apology. Esp. JFL and Bubblebeard. I have thought about my post since I posted it yesterday. I think I was too harsh in the way I said what I did. I don't have children and never will and I don't understand and never will what it is to be a mom. How the kids will handle the news and how they have to explain things to their friends. I admire JFL and others that maintain their careers during this battle. And I admire the moms out there that go through treatments and all this @$#L% we deal with and still take care of their families- have dinner on the table, do homework, shuttle the kiddos to activities.
When I lost my hair, I too wore a wig. And I love my hair now that it has grown back- curly! But that wig is in storage for if/when I lose my hair again with future treatments in this battle.
I still am in the workforce full time, but in a position not of my choosing. I can no longer do the job, career, I have done for 25 years and what I went to college for.
Yes, I am an open book about my battle. I think that is what I had to do to cope with this. When I was first diagnosed, I had to keep saying "I have cancer" to really believe it. So I told it---to anyone. Also since I am in healthcare, a Registered Nurse, I would face it by talking about it in medical terminology discussing the scientific aspects of cancer and how the body is responding. I still do that 1 year into this. Sometimes when discussing things with my MO it seems like we are discussing another patient and I have to stop and think " We are talking about ME, I AM THE PATIENT".
We all must make decisions that are best for us and our families. I cannot judge.
Please accept my apology. We are are wonderful women-and men- that are just trying to deal with this the best way we can.
Love you all.
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HLB... Thank you so much for the tip! That hospital is only that's only about an hour and a 1/2 away from me! I will start looking into him.
It is a big tumor but I don't see why we shouldn't at least go for it… if they want to shrink it some more using something else and then do the Y90 I'm down for just about anything. It is a big tumor, but it shrank very quickly on the chemo (half the size in 3 months!). But she just switched me over to hormonal and targeted therapy. I'm on the fence about how I feel about that. thus, the 2nd opinion. Along with her being completely clueless.
Tennille... I hope you start feeling better soon! You are not the 1st lady to let me know that I shouldn't be giving up. The only other mets I did have were extremely small and one was in my sacrum and 1 was in a vertebrae. They're both sclerotic, she told me that meant the chemo worked.
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Candy, you don't owe me any apologies! I understood what you were saying. We all handle this differently and that's completely fine. So although the apology wasn't needed, it is accepted. And I'm sending you love as well
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Bubblebeard-
You be "pushy" girl. You read, post here, and educate yourself and then "push" for treatments and anything that will fight this. This is your life. Who cares if you step on your MO's toes. You do what you have to.
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