How are people with liver mets doing?
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Shetland, Awesome report!! Short & sweet, just right. 😀
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Amica - As Grannax2 pointed out, you definitely need an interventional radiologist. What I also found out was that you need one who has experience with breast cancer. I went to get an opinion from an IR that dealt mostly with other types of cancer, but never breast cancer. He said he would not do Y90 for me and I know that ablation is out of the question for my mets due to where they are located. I was terribly depressed but then went to a center in Charlotte NC where the IR had ALOT of experience with breast cancer and gave me the exact opposite opinion for Y90. He spent a significant amount of time with my husband and I. Right now my liver tumors are a "complete metabolic response" by PET scan. If that changes and my liver "lights up again", I am headed right back to that IR to ensure that I am a candidate for Y90 and will go for Y90 treatments. I will choose that local treatment before beginning systemic therapy for any other mets.
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Shetland - Awesome news! Congratulations!! Breathe it in! Let's hope this tat does the trick for a long time to come.
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Awesome news ShetlanPony!!!! I'm imagining you going run around and kicking up your heels in a nice grassy pasture like very happy ponies do
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Yes, and some head shakes too! Thank you for celebrating with me, my friends.
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Thriving..yes I responded to you in the Xeloda thread
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Shetland pony
💃🏻💃🏻💃🏻💃🏻💃🏻 Happy dance for you
Dee
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Shetland, awesome, yaaaah!!!!
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I love the dancing, Dee and Cure-ious!
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great news shetland!!!!! thanks for sharing!
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Nicole- Do you have scans coming up soon? I thought you did. I am sorry if I missed it if you have already done them and have results.
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Hopeandgratitude. That's exactly what I did when new liver mets started showing up again. I had my second set of y90's in November and December 2019. I got the same amazing response resolution of mets. We're on the same page. 💞
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Thanks for remember me Candy!! Yes my MRI of Abdomen is tomorrow...I get results Wednesday.
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Shetland - happy for you!
I have not really posted since starting halaven, but it has been a roller coaster. Had first treatment 2 Tuesdays ago, and i initially did really well w/it but as warned I got very fatigued that Friday along with restless legs and some weakness in the legs. Went in for some fluids,&One of the nurses (that I've known the whole 7+ years, was concerned that my eyes looked jaundiced, but after talking with my MO and looking at labs they thought everything was ok for me to leave. The following Tuesday which should have been 2nd treatment (day 8) my counts were really really low. I forget the wbc but ANC was .092. No treatment for me other than a bone building shot (not Neulasta or Neupogen - I kept forgetting to write down the name) and they put me on iv antibiotics which thankfully they had there & I didn't have to go to hospital. I had to go back for those 2 meds throughout the week, but I was also noticing that my abdomen was getting more distended with legs having lots of fluid as well. They said that the fluid was a side effect of Gemzar & we did see some on my last pet around spleen & liver. So, the hope was switching meds would help that .....Haloven is dehydrating to they didn't want me on diuretics. And no one wants to have to go into a hospital right now. Stayed in touch through the weekend &, it has continued to get worse and almost no position is confortable for any length of time. I see my dr for sure on Tuesday but when things worsened some yesterday I did talkk with a super nice Dr that was on call. So, if it gets worse where I get short of breath, etc. I'm to go straight to hospital and the on-call doc will be at the same center as mine on Monday so we can jump on it quickly then.
It is absolutely crazy that your body can be full of fluid to the point of pain yet you can also be on the brink of dehydration. To top it all off, I"m apparently in the percent who lose their hair on halaven . It was like adding insult to injury yesterday & this morning as it just keeps coming out.
Thanks for letting me vent! Hope you are having a happy easter!
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nbnotes..what in the world is going on with your body? That is super scary and you are so calm and level headed about the next step with your monitoring.
Is there such a thing as reduction on this chemo? Will they give you neulasta or something similar to boost your ANC? And now you have to add the IV antibiotics..lordy.
With time, I am hoping this all settles down..fluid retentiom, dehydration, infection worries. You have a lot going on, don't be a hero. Get help when symptoms become worrisome.
Meanwhile..enjoy today's sunshine or watch your favorite shows.
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Nancy,
Oh, my goodness. That's a whole heckuva lot going on. I hope that your body settles down a bit and these problems can be solved. I forget -- did you have any break between the Gemzar and the Halaven? Maybe that's called for as it seems that the side effects you are experiencing might be left over from the Gemzar? I've not been on either drug, so I really don't know. Just throwing that out there. As Sandi said, don't try to be a hero. Get in there if side effects worsen.
Thinking of you.
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oh nancy, sorry to hear about your pain & your fluid imbalance issues. That sounds very uncomfortable & I hate how these things happen on weekends but sounds like you are getting good care anyways!
just in case you're intrested: It's called third spacing when way too much water leaves the blood & gets into the spaces between cells - swollen ankles, ascites (fluid in the belly swelling). sounds like your doctors are working hard to figure out what's causing this for you. The most common cause seen on med/surg hospital floors is low albumin or low total protein in the blood (which is often caused by liver problems). the water in our bodies flows in a proper balance between blood, cells and the area between the cells constantly through osmosis & oncotic pressure. When there's not enough proteins in the blood, the blood can't hang on to water as the oncotic gradient is wrong and the water just spills out so you're dehydrated and ballooned with water.
I hope your symptoms are resolved quickly. I don't know if they told you but it can cause low blood pressure so be careful standing up or changing positions as you might fall. Do it slowly.hugs
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Shetland, wonderful news! So happy to hear.
ThrivingMama, I hope someone can chime in about experience with increased bilirubin.
Nbnotes, I am sorry you are in so much discomfort
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SandiBeach57-- I'm glad to hear I sound calm and level headed.....I don't really feel that way, lol.
BevJen -- I had to be on a reduced dose of Gemzar & only doing every other week instead of 2 of 3. We immediately started halaven on what would be that same on week. The dose can be lowered, and they've already said we would lower at a minimum and possibly take this week off. With the way things have gone, I definitely would like that off week.
moth -- Thank you so much for that information. It was very helpful to understand what is going on, and the info on blood pressure was definitely helpful just to take things slow, etc.
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Shetland, so glad to hear about your encouraging results!!! Were these chemo drugs that gave you such a good response?
Yes Grannax2 post some fashion pics if you find some, you're our resident glamour girl
All the support and fortitude in this thread brings tears to my eyes. You are all brave and awesome.
Sounds like many of you are making visits to the hospital. Do you feel they take sufficient precautions from the virus? Is it noticeably less busy? I am guessing they still do chemo at the hospital, and obviously they have to CT scans etc at the hospital. I am worried about getting my next scan done, which luckily won't be for a couple of months.
I am still having no luck finding facemasks available for sale anywhere, although just today, over the phone, a clerk at the pharmacy said she would set a box or two aside for me when they are delivered since they basically disappear the minute they go on the shelves. Who knows if she'll remember but I'll keep trying to remind them. No rubbing alcohol available since March. I've been using hydrogren peroxide to wipe down goods that I order in from the pharmacy or grocery store.
I've been mulling over how to get my visiting nurse who gave me my faslodex shot to better screen patients for the virus. I have to find a way to query him more about this without offending him. I live in a small town and apparently there is only one visiting nurse who is available to me. Still can't get over the fact that he wears the same mask and the same pair of gloves to see all this patients. If anything, I'll ask him to wash his hands before and after he puts his gloves on. Plus he had never given a Faslodex shot before, although he said he had given intramuscular shots before, hope that gives him sufficient expertise. It's such a scary time. It all makes me very anxious.
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Amica, I do go to the cancer center weekly for treatments. They asked me to wear a mask and gloves (which I would have done anyway). When I enter the center, I have to answer a few questions verbally, which the front desk person writes down on a sheet of paper. The front desk person then takes my temperature and writes something down on the sheet about that. I have to give the completed questionnaire to the receptionist on the 3rd floor where I have the treatment. It is quieter with less patients at the hospital but curiously, the hours of waiting for what I never know have not diminished at all. I have a 30 minute infusion and the whole process takes 4 hours at minimum. That has always baffled me. My MO told me about 1/3 of patients are coming in. I believe no one is coming in for 6 month or other check-up appointments and no other discretionary appointments. Only patients who need treatment come in, although some of them are not even coming in for various reasons.
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These are my modeling pics. I’ve been a survivor model three times. Dallas 2018, NYC 2019 and Dallas 2019. Thanks to Say Yes to Hope and SMGLOBAL Catwalk.
My sister walked with me in November also a BC survivor. In NYC my daughter, her BFF and my BFF came with me. In Dallas 2018 my whole family came and the photographer took some awesome pics for us.
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Great pics, Grannax! I bet they bring back some nice memories. 🌺
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