How are people with liver mets doing?
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Thanks Shetland for your words to me. I do plan on talking with my MO on the 25th appt---" So things look good on PET. Are we still going to scan with CT every 3 months?" " I don't want to get too confident". Yes I will convey my fears to her.
Gumdoctor- Lookin good. Wish I could knit. But I am not good with "crafty" things. You are in my area of the country----Yes it is really cold for this time of November. Broke a century old record yesterday for the temp.
Anotherone- 1 and only PET done at diagnosis--Sept 2017. This was the 2nd PET. Usually do CT's. Insurance has denied PET's until this one---since change on last CT.
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Bevjen, your announcemnt:
"Does everyone know about the webinar tomorrow night sponsored by Living Beyond Breast Cancer? It's at 6 p.m. EST -- if you go to their website you can still sign up. It's about metastatic cancer treatment choices and side effects, and there is some kind of a participatory Q & A session."
Is this today at 6 pm EST? Thanks for letting us know. I will sign up, if it is not too late.
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S3K5,
Yes, it's tonight at 6 pm EST.
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thanks Shetland-
Your thoughts must have worked. It looks like I might be accepted into a clinical trial for the drug I was denied by insurance to try and treat my brain Mets. I am very hopeful.
Thanks everyone for your thoughts and well wishes.
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Leftfoot, that's amazing news, congrats! I'm hoping for great things. Keep us posted on your progress.
Gumdoctor, love the wig and cap look, bonus for winter warmth!
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leftfootforward , that's great news! Hopefully the clinical trial will start soon and the outcome is positive. You will be paving the way for other ladies here with brain mets.
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Congratulations Leftfootforward!!!
Anywhere we can find hope is a great thing.
Gumdoctor
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Hi All...well here we are
It was a nice ball and I am grateful to have been able to attend another Birthday Ball with the love of my life.. I guess I will cross post since not everyone comes here ....
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Nicole,
Such a beautiful couple and lovely pictures. Thank you Rod for your service. I'm so happy you were able to enjoy this year's ball and to many, many more. Lisa
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Nicolerod, oh my goodness! Great photographs of you both. Frame these.
What are you..like 18? How do you look so young? Obviously, I am jealous.
I will be thinking of you with your upcoming surgery and new treatment plan.
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beautiful Nicolero just beautiful.
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Nicole, wow, wow, wow!
Leftfoot, I’m so glad it’s looking good for the trial. Do I remember right it is neratinib you’re after? If for some reason the trial doesn’t happen for you, your onc needs to fight for you. It is shameful that insurance denied.
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Oh Nicole, you look smashing, absolutely radiant! Your hubby is very handsome and dashing! Here's to many more years of happiness together!
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Nicole,
You look gorgeous and your husband looks quite dashing in his dress uniform. Hope you had a terrific time at the ball!
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Thank you ladies for all the compliments so nice.... We had a nice time.
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Absolutely beautiful Nicole!
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thanks lori
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Charge your glass, Nicole, you two look smashing! Glad you had a good time, you deserve it.
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Nicole- Good pics !!!! Your gown is beautiful. MRI tomorrow (11-16), right? Good luck.
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Nicolerod, beautiful photo! You look amazing!!! I will be praying for your surgery and for Leftfootforward's... new medicine plan. Gumdoctor, love the hat and hair. I struggle with hats but you have the right idea to add the hair. I am right with you all with having a scan taken today. Now for the waiting... I don't remember who said it, but I agree that it is so hard when you have good results (NEAD) but are Stage IV and people don't understand you are still sick, feel crappy, and struggle with everything you do. So many people say to me in surprise "You look good." I want to add, "how bad did you think I would look?" Thanks for letting me vent. I don't say much on this thread, but I lurk.
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Candy..yes MRI of femur today. Surgery Monday..and today my constipation was so bad I think I might be forming an anal prolapse..I cannot get the poop out I had to push so hard...I just want to cry. I am hearing now that the Zoladex can constipate you. I just got that shot a week ago (for the first and Last time) and now surgery is Monday and I have to be put under and I am not going to be able to poop....I just don't know what to do. I drink like 60 oz of water a day I have very little dairy I take 400mg magnesium citrate a night, I take a cap full of miralax every morning... Colace and senna do not work...I don't know what else to do????
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Good morning Nicole, dealing with constipation is hard (pun intended). When I occasionally take opioids for the pain, which causes constipation, my oncologist prescribed Amitiza. Just a pill and very easy on your system. You can see if that works. Senna caused abdominal pain for me. Good luck today on your MRI. I have my PET/CT scans on Friday, last week my CA 27/29 tripled, so the CMF might not be working. After my experience with Gemzar, I was hoping for a break. Ugh! Cancer really does suck. Lisa
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Hi Lisa and thank you ...I will ask the doctor about that med. I am going today to buy glycerine suppositories, I am going to up my magnesium at night, one girl told me she takes 1000mg...I take 400 mg...I am going to up to 600 or even 800mg and I will continue with the miralax and I will also buy prunes and prune juice..I didn't want to do it because of the sugar..but I NEED too... I seriously think I may require surgery after this morning..it was THAT bad...it looks almost a tiny bit prolapsed
I think I will start a thread about the consitpation thing..I don't want to hijack this thread...Good luck with your scans I am praying the markers going up are from die off!!!
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Nicole, I'm not knowledgeable about magnesium, maybe others are on this thread. Can you take to much? When I came back from Spain, I had no new cancer, then in September had 10-12 new cancer in my bones and new Mets in my liver. My liver and lung mets have been stable for a few years, but bone mets hang in there. Keep a eye on your bottom - if you have a urgent care you might want to go in. Working on the ambulance today and will be praying and thinking about everybody on this site. Take care 💕
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I've been missing in action! Sorry, it's been crazy busy at my house. My sister was here, we walked the Catwalk and I had the mapping for y90s. UGH This is my life for the next few months.
On November 20 I will have the real y90. For some reason it's scaring me, this second time around. How many people even get to have second y90s? Not very many, none on BCO, that I know of. I know I'm not paving the way, I'm sure there are worldwide statistics that I know nothing about. But, I'm not a statistic. I'm the zebra, always the unexpected hoofprint in Texas. Evidently, that analogy is taught in medical school.
For example, my IR found an AVF, artery to portal vein in my liver. What?!?! Rarely, after y90s, the liver manages to form this abnormality. UGH. So, after y90s and recovery, my IR will embolize it in another procedure. He also told me that he found more liver mets than he expected. Yes, he still plans to zap all of the ones he can see. He asked when my MO plans to start chemotherapy again. My MO mentioned capecitabine, the only one I haven't had. But, I read it is contraindicated post y90. I am taking Faslodex in the meantime. I didn't experience any problems with the loading dose.
This life we live is hard for people who like to PLAN things. We have learned to plan with caution. We know it doesn't always go as planned. We know what plan B, C, D E, F G....... feels like. So, WHY do our family and friends expect us to tell them them what to plan for?!?! Now, what are the dates so I can put it on my calendar? Then, when I say but there are things that could happen that could change the plan. WHAT?!?! They say. Clueless. How can they be so involved with care and not see that? Grrrrr. Here I go growling again. Over and over I explain to my support team. I don't like saying the same list of complications over and over. It gets stuck in my head and plays like a broken record.💞
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nicol , have you tried olive oil?
A spoon a day was just enough softening action for me but you may want to take half a glass by the sound of it 😱😥
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Grannax- Praying for you for the Y90 on the 20th. Then the embolization procedure and the chemo. I am a planner. Always have been. So I am one of those that gets out of joint when plans change. Guess I am going to have to lighten up with MBC, huh.
Nicole- Time for an enema (Over the counter kind). Need to get the job done for surgery Monday. Go into surgery cleaned out. I wonder about how much Magnesium is too much. Magnesium is one of those minerals that can effect heart function (calcium, magnesium, potassium). I feel for you. I fight constipation too.
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Nicolerod.
Being impacted can be a very serious condition. Please think about calling your MO or whoever is on call and ask for advice..especially since you have surgery Monday.
I am assuming you will be given pain meds for your surgery which could make this worse.
Please call them today if you get no bm soon.
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