How are people with liver mets doing?
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Z wonderful news!!!! So happy for you!’!!!!!
This past week I had my scans and they show that I had a 100% response to the Y 90. My liver is cancer free. Pretty amazing. I just am sooooo fatigued and I keep losing weight which is disconcerting. My mo put me on a medication to help with my appetite. I still have this cough that’s driving me nuts and am waiting to see a pulmonologist. My appt isn’t until 6:25. Crazy. I’m trying to get in sooner.
Bluebird. Another sister to pass. It just hurts so much each time we have a loss. I hate BC
Babs
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Happy Dance for Babs and her CANCER FREE liver. May your lungs be cough free soon.
>Z<
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Z, you definitely had, as my 3-year old would say, “one of those days"! (He hears me say things once and then adopts them as his own phrases.) Very tough to have adversity after adversity thrown one's way - especially when we feel the pressure of wanting to enjoy every moment and make the most of special events like field trips and quality time with our children. I typically don't have expectations of how events and holidays and the like should go. However, since Stage 4 dx, I now have expectations and feel deflated if things don't go as I wanted them to go. I must admit, the part about cleaning up the vacation rental did give me a chuckle - you are such a trooper. So the low dose weekly Abraxane took all your hair? My MO always told me weekly Abraxane only causes hair loss in 50%. However, I never saw anyone on these boards keep their hair on it (without cold caps). Did you ever continue with the cold caps after your first treatment and did they help at all?
Babs, I just posted on the Y90, etc. thread about your results! Beyond amazing.
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Z - my goodness I just read your post with the flood in the rental condo. You are Wonder Woman! I would love to have seen the looks on their faces!
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Hi all, in my latest PET scan the Mets in my liver had coalesced. Has anyone had this happen?
I am currently on an unconventional treatment (Irinotecan and 5fu used for colon cancer) but flagged to be beneficial to me on the Caris test. I’ve been on it for 10 weeks now and can feel the improvement in my lungs, my liver function is better and my bloods are tolerating it well. Other side effects are tough and I’ve lost so much weight, for the first time I actually look sick. Trying very hard to put back the weight.
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Nina, my diffuse mets coalesce also. I have a “blob" in the middle where various sections of my liver come together. There was a point when the PET said that nearly my entire left lobe consisted of mets, although that improved with Xekoda. It is pretty common for diffuse mets (and scary). What kind of side effects does Irinotecan give you?
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JFL -
I did cold caps for the first cycle of Abraxane and I did lose my hair. They do work, but I jog and walk during the IV and for the first 2-3 hours after the IV to increase blood flow and abraxane to the tumor. You can't have your cake and eat it to ... increase blood flow with exercise but expect that dry ice is going to keep the drug from getting to the scalp. I am not sorry. Now that the hair is gone, I really don't care. The cold caps were a pain and interfered with exercising. What I want is successful treatment.
FWIW, the cold cap vendor says that exercise impairs their efficacy so don't judge cold caps by how they worked out for me. The clinical trial results for cold caps are pretty solid, they work.
>Z<
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Hi All
I've been distracted with visitors and chemo tiredness and have been off the site for a few weeks. It's so devastating to hear of all those we have lost since I have been gone and I have shed a few tears. This darn diseases is so relentless. Big hugs and love to all the families out there.
I feared so much when I developed such high bilirubin levels (it got to 19 when I was admitted to hospital and down slightly to 16 after stent op) about 6 weeks ago. My Mo told me there was one option, Cisplatin - which can affect the kidneys but is ok with high bilirubin. I would try 2 sessions 3 weeks apart, but if that didn't work it was most likely the end of the line for treatments for me. After I took my first dose on May 3rd, I have been feeling much less fatigue, stools darkened, urine lightened, and no more yellow, even my eyes which took the longest to clear. Last Monday, I had my blood checked before my MO visit just before the next scheduled dose of Chemo. These showed my bilirubin had come down to 2.5! (normal being 1). This is fantastic level for me. My MO indicated I should have the my next dose of Cisplatin which I had last Wednesday and if my white blood counts hold up (currently in edge of low) she would add Gemzar and I'd have an extra two doses of Cisplatin and I assume I'll be on Taxol after that as that was the plan. I feel I have teetered in the edge of a cliff and not fallen. My heart breaks for those who are no longer with us.
So I am still v tired, can't walk far (due to fatigue and getting my leg going again after the pin I had put in my thigh in April). I have cancelled my gym membership, which was impossible to make use of, and I am trying to swim in our new refurbished pool. I'm even thinking of getting an electric scooter so I can take the dogs out and get some fresh air.
In a more serious note, we are signing wills/trust/health directives/power of attorney documents with the lawyer next Tuesday. I'm also going for second opinions at centers who may have suitable clinical trials should I need some more options. My scare has given us a bit of a kick to get these things sorted. I am also getting more fussy about how I spend my time and planning nice days and adventures (eg day at cooking school)
Wishing for all good news (so nice to see that too whilst I've been off the board) and successful and comfortable treatments for everyone.
Sarah
PS: Any one been on Cisplatin and didn't loose their hair? I've been expecting it but nothing so far though Taxol will probably finish it off.
MomAtt: I hope this answers your question to me a few weeks ago.
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Scwilly - Many of us have teetered on the edge and are still around. There's a lot of teetering on this forum, but we're a tough crowd. I admire your great attitude and smart pragmatic approach, and I am thrilled with the great response to Cisplatin. Sounds like you have a good onc as well. All of these indicate nothing good news from here on out. Please keep us posted on the clinical trials they suggest. Many are interested.
>Z<
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Zar just imagining you shlepping that couch and the people's faces cracks me up. You are one special woman.
That's how i see you. It's amazing. And you just wanted a little break. It really really sucks to say the least the rough part in wanting to be there for the kids, and you did have the best intentions. Ughhh. Well you did make it. I'm telling you it reminds me just 2 weeks b4 Dani hmmm you know, anyway she had to be at school, all made up, no one thought of a/t, she was totally falling apart but she somehow somehow made it through. So happy for you.
NIna27 this news take my breath away. I remember your first post, i almost could not get through it, your pain , but you are holding here now, and thank you very much for sharing this moment with us, as Z said, forward you go.
Scwilly so so happy for you, it is a big turnaround, happy happy dance.
Babs sending you only positive vibes.
Waving at everyone.
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So, I am on doxil and hate it. This is day 6 of my second infusion and last night I threw up acid reflux. I am so tired-cannot sleep. I am beginning to wonder if I am going into liver failure. I have no idea if this stuff is working. I am out of sick days for the next school year, and if I retire I will literally be unable to pay my bills. I am in bed all day-try to get up periodically. And tomorrow I will find out if I am triple negative as they had to do the fish test on my biopsy. I just don't see ever feeling good again. I hate this disease. My onc says it is impossible to say why my ALP was over 200. either from the biopsy, treatment or cancer. I had one dose of doxil under my belt when the took the panel. That tells me the doxil is not working.
Plus, I was supposed to go to the OUter Banks JUne 2, but the group of people going had concerns about me going. They said they would not know what to do if I got sick. And there are too many children going. So I am out two plane tickets, a 300 water wig, and am still waiting to be reimbursed 800.00 for my room. Nice, huh?
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lisajo- I am so sorry that you are feeling so unwell. Do you think you can get to your trip? Can you call the airline and have them change the date? I am not sure how long your trip is and if that is possible. I changed one recrntkycas I was too unwell to leave on Thursday. The airline switched it to Sat no charges. You could ask.
Can you call your MO and see if they can help you. It sounds like you need fluids. Those can help so much.
Wish there was more I could do. Sending you virtual hugs.
Oh- you decide about the vacation nitvyour friends. They should understand.
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my friends dont want me to go. thank you for your respone.
hugs to you.
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Lisajo,
There is so much you are facing right now that I don't know where to begin. Friends, money, vacation, sleeplessness, vomiting, worrying about FISH results, concerns about your liver - it is hard for me as an observer, I can only begin to imagine what it is like for you. Your post brought tears to my eyes, and I picture you sobbing just thinking about how overwhelming all this is. I know that it is how I would feel.
First let me talk about your friends' actions. I know that they have your safety and health in mind when they said you shouldn't go, but I think they have not taken your feelings into consideration. You were looking forward to getting away with them, and now, just days before you were supposed to leave, they asked you to stay home. I would be sad, disappointed, and angry. Nice? NO, NO, NO! NOT AT ALL NICE! Do you feel strong enough to go? You said that you have two airline tickets. Were they both yours or were you planning to take someone with you?
Next, let me talk about how you feel on day six of your second infusion of doxil. Like leftfootforward, I think you should call your MO's office. If you are vomiting, feeling weak, and unable to sleep, it is difficult to cope with anything. Perhaps you need fluids, as leftfoot suggested. Maybe there is medication that can be prescribed to alleviate your SEs. Maybe your next infusion should be a lower dose. Perhaps you are anemic. At any rate, it is worth a call to your onc's office. I know that when we have new aches, pains, or symptoms we immediately think the worst, but maybe the vomiting is from the doxil and not from liver failure. Even the rising ALP can be from several different things, as your doctor has stated. If you do not get any satisfactory help from your onc, think about getting a second opinion.
You also said that you are out of sick days. Do you have short-term disability at work that allows you to take some time off and still get some pay?
I wish I had all the answers you need. I wish I could make all the pieces of the nightmare go away. I wish I could make you feel better. I wish I could take you to the Outer Banks and give you the beautiful, relaxing vacation you deserve. All I can do is let you know that I am sorry that you feel the way you do. I am sorry your friends made you feel unwelcome and disappointed. I am sorry you have MBC and everything that comes with it. I hate this disease, too. I hate what it does to us. I hate what it does to our loved ones. I hate what it does to our minds. I hate what it does to our lives.
I hope that your MO can find ways to help you get through this rough period and make you feel better. I am praying for you andsending you (((hugs))). Please let us know your test results and gives us an update on how you are feeling.
Hugs and prayers from, Lynne
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Thanks so much for your reply to my post. I feel like I may have had growth in the liver for sometime. I feel like the Tamoxifen stopped working. Just not sure why TM's were never elvated through all these years. Also, my liver enzymes are normal too. My Tm's have come back elevated this year. The CA 125, ovarian marker is 185. From my understanding can also be Breast Cancer.
I will know more after my surgery.
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candy-678
YesI agree Cancer is so sneaky. I found that I had liver mets because I went to my MD in regards to what I think was pain/episodes I felt I had due to my Gallstones that was food triggered. I had an ultrasound and that is when the liver tumors were seen. I then had a CT that showed I have cysts on my ovaries. Baseball size. I will have a hysterectomy June 6.
Just waiting to see if this is a second cancer dx or Breast cancer. Hopefully, no cancer at all!
So glad to read your mass has decreased in size!😀
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LisaJo,
Are you taking an acid reducer like Tagamet? If not, send someone straight out to the pharmacy to get you some! Doxil plays hob with your digestion, and if I weren't taking two Tagamets a day, I would have to curl up and die. Seriously - I can't stress this enough. Get that medication into your system, pronto.
As to the trip: can they make you not go? I mean, what sort of trip is this? Will you be too far away from medical services, should you need them? I get that they are scared, but unless they have signed on to be your caregivers, they really don't have a say, do they? Gosh, I'm feeling stroppy, but I don't understand how they could tell you now, after you've paid for everything, that they don't want you along. They don't have to know what to do if you get sick. That's what trained medical professionals are for. If they lived next door to you, they wouldn't have that responsibility, so what about the Outer Banks brings it on? This is where someone tells me that it is a far distant site, leagues away from hospitals and doctors. If not, I give a fig for their fear.
But, honestly, get those acid reducers in you, then reassess. I forgot to take them for about a week about six months ago. I'd run out. I had no idea how much I needed them. I was queasy, and headachy, and dizzy from stomach upset. I, too, thought I was going into a liver meltdown. Started taking them again, and it was like a magic wand. I really hate being nauseous.
Wish I could make it all better for you.
Jennifer
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Lisajo,
If you decide to go, there is a small HemOnc facility at Outer Banks Hospital in Nags Head NC. Maybe your MO can help with any transitional needs as you vacation. Call OBX Hem/Onc office and ask to speak to a Staff RN or RN navigator and explain situation. They will need to coordinate with the infusion outpatient if chemo or fluids are needed. Cancer patients vacation all the time on OBX, they work with your main MO if needed. Take copies of your records or see if they can be electronically transferred.
Hem/Onc: 252-449-7272 or try this one: 252 449-5982
Infusion: 252-449-5637
I really hope you can make this trip. It sounds important to you.
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MomAtt: I love that poster. Your Dani was one strong lady and I know you are too. Thanks for being here supoorting us.
Lisaji: I feel you panic and wish a solution for you so you can take your trip or not if you decide. I don't have any practical suggestions apart from given above. We did put on hold my Mums & Dads flight back to the UK once, when Mum got a blood clot a few years back and had to stay for treatment without know the delay. It always worth an ask.
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Lisaj THIS IS gonna sting but here it goes: THEY ARE NOT your friends. These were always my father's words when i cried that "my friends" were not being very friendly.
See? These are friends.
The bottom line, cancer or not cancer, this happens every day in our lives. Sometimes people are more subtle so we don't get to see it straight away, and we are stabbed in the back, sometimes they tell you to the face. At least now you know you can count on other people. It's their loss for not rising to the occasion.
To be just a little nice, one could say they cannot possible understand what you go through day in day out.
Anyway as so many wonderful ladies are telling you if it's really important for you, try to go. Maybe you could prepare yourself, these phone numbers could be a beginning.
Finally, you know last year Dani's sisters prepared long and hard for an Oregon trip, out of the blue, Dani decided she wants to go away with them instead, they actually called the airline, I think it was JetBlue and believe or not, after they heard of the story, they refunded their tickets.
You are not alone, from what info you did give, there is still other treatments. You didn't go through the whole gamut. See what works best for you. Deep breath.
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Lynne - your heartfelt/informative/motivating/personal responses to each of us are amazing. Thank you so much for your words of encouragement. I haven’t been able to make videos for my DH and DD yet. It’s just so hard to admit that I’m actually dying. I definitely need to make a few soon, while I still can.
So, update...started Norco around the clock on Friday. My fever spiked to 102 on Saturday, so I called the on-call doc. He said let’s just keep an eye on it, and call if it persists. I spent the day in bed, going between chills and sweating—it was brutal.
Woke up yesterday, feeling the fevers were gone. However, when I tried to exert myself in the least bit, I would sweat profusely. So, spent the day in bed again. My gut was starting to hurt again—I haven’t been able to get my bowels right for several weeks. I was going back and forth between constipation and diarrhea...attributing it to Norco. I tried to get moving last night to try to get my bowels moving. I ended up short of breath, and coughing up phlegm, and fever back up to 102. Called the doc, and he told me to go to hospital for observation, and see what’s going on. They were thinking pneumonia.
Had CT scan today, but resident will only tell me some of the results...my MO will give me details in the morning. Turns out I have colitis, most likely from the immunotherapy attacking my healthy organs. They started me on a steroid, and I most likely will have a colonoscopy/biopsy in the morning. GI doctors never responded to the resident’s request to see me today—damn docs and holidays. I asked how the lungs look, and he hemmed and hawed, and said MO will review with me in the morning. I pushed for more, and he said ‘let’s just say it was an abnormal scan’. So, I guess the cancer has progressed to my lungs. He also said there was further progression in the liver. So, here I sit in the hospital, feeling pretty good, other than the constant sweating from the fevers coming/going (fevers most likely caused by tumor burden and colitis). All of the docs and nurses say I look good, too (grr!). My Y90 planned for tomorrow will be rescheduled, but my MO thinks it’s still important that I have it. I wonder if my IR will still do it, now that I most likely have lung involvement? He said in one of our consults that good candidates have the cancer in other areas under control. We shall see what comes of all of this tomorrow.
BAbs - soo happy to hear of your Y90 results!!
Love and prayers to each of you!
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hang in there KC. As someone who has suffered from colitis muchbofvmyblife, I appreciate how miserable it makes you feel. Hopefully they can help with that and your other symptoms ease as well. I will think about you tomorrow and hope that you can still receive Y90.
Thinking of you
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KC - a resident would not be able to distinguish an inflammatory response to immunotherapy from progression in a CT scan.. not sure if anyone can. You need to grill your docs on the distinction... much of what you describe is what immunotherapy does when it is working ... attacking both cancer and your colon and generally making you miserable... that is a possibility. Don't listen to anyone who is not an expert in the treatment you are on.
Z
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thanks, Leftfoot and Z. I will definitely ask my MO about this in the morning. Every time I ask her or any of the other doc questions, they comment on how knowledgeable I seem to be, and say that I ask great questions. I learn everything I know from these boards. :
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KC-So sorry for what you are going through right now. What a weekend! I hope that the Opdivo will work and that you can get your Y90 rescheduled. I pray that you will have a peaceful rest tonight and some better news tomorrow.
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Babs, I’m so happy this medication worked. That is just incredible news. Hope you get your cough under control.
Thinking of all of you🤗
Anita
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KC you sure have a bucket full. I wish that today these so called docs get themselves in order and tell you what's what. Just horrible what you had to go through. Dani always had something going on Friday and Holidays. Gosh, she cursed these days. Re: IR telling you that most people are ok in other areas when they have Y90 is such crap, we should make a book of all the idiocracies that docs say. No way, Babs just had it and she's got bone mets...Dani had brain mets, bone mets something in the lung and she had Y90. And many more ladies here. I cannot even...So straightened this guy out...take good care.
And yes, it would be nice to have videos for the little one, you are not running out of time.
Lynne it's so true, you are so sweet and inspiring in your comments, thank you,and thanks for giving me strength on Dani's thread.
Scwilly it's my previlege to be here with you ladies, are you kidding me. This is home for me, i feel more comfortable here then in the outside
trust me. But if my experience could help anyone, oh that's just wonderful.0 -
KC, I did not mean to imply that those videos are because I think you are dying or just for people who are dying. On the contrary, I think videos serve a wonderful purpose even as we continue to live. It is so much fun to look at them and recall the times they were created. I love looking at old photos and movies of my children, my grandchildren, my DH, and me, and we are all still here. I can only imagine how much better it would be if I could hear the conversations that accompanied those times. I think back to the dreams I had for my children. I didn't even write them down, let alone record the. I imagine how it would be to share a video now of myself talking about those dreams. Would my dreams be different now? If I had recorded something for them to watch as they graduated from college, would my words still be relevant or powerful or just silly? Would they appreciate those words? What if I had a video of my children talking to me about what they wanted to be when they grew up. Oh, it would be so much fun to watch those videos with them now. Oh, and think of future generations. Imagine how intriguing it would be for your great-grandchildren to see you and hear your voice and listen to the wisdom you imparted to your own children. Think how they would feel watching the warm interactions between their great-grandmother and her children. They would see differences in clothing and hairstyles but see that love and emotions cross all generations. I do hope that Z is right, and the symptoms you are experiencing of from your treatments. I am thinking about you today as you meet with your MO.
Hugs and prayers from, Lynne
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BlaineJennifer,
I have a prescription for Prilosec. Thanks goodness-I started taking it and no acid reflux. I have so many questions to ask about doxil. Did your liver every hurt for a few seconds? I am at school making up a snow day and I walk down the halls-and get totally out of breath and shaky. I have no energy. aches and pains in my gut when I cough. My back aches. I lie down an awful lot. I just have this fear the doxil isn't working-especially now that I have morphed into triple negative.
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thanks, Momallthetime—I appreciate your support more than you know!! Your strength and knowledge are incredibly admirable!
I wish you were right on this one. I talked to my MO at length this morning, and it appears the immunotherapy is doing nothing, except attack my healthy organs. There is significant progression in my liver—practically the whole liver is now involved with new mets and old ones growing. I also have progression in the bones and spleen, with new mets showing in lungs. My MO's fear is that if we treat the right lobe with Y90, my left lobe won't be well enough to support my body while the right lobe 'heals'. She also doesn't want the other mets to go haywire without treatments while we wait for the 4-6 weeks until the Y90 is complete. So, Y90 is on hold until we can hopefully shrink the liver mets a bit. We should be getting results back any day from the Tempus test on my recent liver biopsy (pretty much the same as F1, Guardant, etc). Hopefully that points to a treatment that might work. Halaven, Doxil and Abraxane are on MO's short list while she does some more research.
I sit here, still in the hospital while we wait for blood cultures to come back to rule out lung infections. I still get short of breath and cough after exerting myself (just showered, and it felt so good). I also have to give a bowel sample to rule out C-diff (fun, huh?!).
Lynne - you are so right about videos. We never had a video recorder as kids—how I wish I was able to watch some old vids. We do take a lot of videos, but not nearly as much as we should. I have been completely camera shy for the last 1 years (aging and weight gain). I've been slowly getting over that since my daughter was born. I know how important it will be to the people I'm leaving behind.
xoxoxo to all
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