My Husband, My Life, My Love, My Family, My Cancer
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Mel- My MO did mention maybe liver resection since all 4 mets are in segment 3 and 4 of the liver. She was going to ask liver tumor board their advise. IDK about surgery. Wouldn't that be a BIG surgery? Recoup? I am alone. And PAIN !!!!??? IDK if I want to go that route.
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Mel your words are so encouraging to Candy, I hope they sink in for her and ease some of this.
I was lucky, though I stumbled I did not fall all the way, just landed hard on my foot. I have already walked again to and from the grocery store, very carefully and even shorter steps, when I wanted longer strides I walked on the side of the road and went back to shorter steps with right foot lifted even more than usual. It was enough of a reminder that I should never be too cocky.
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Oh Mara, glad you didn't fall or twist your ankle! I'm betting you have gotten way stronger, both in leg and core & have greatly improved your balance from all this walking! Stay strong
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Moth, I will and I agree, leg strength is far better than last year. I will keep walking and watching the gaps in the sidewalk. My right leg is going to be even stronger since I am lifting it even higher now. Thanks, my foot was sore from landing hard but it feels better now. I won't stop walking.
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Candy, I responded to you on the liver mets thread but just want to say I feel like you’ve gotten some really good info in your responses to your posts already. I hope it helps to know so many of us care and want to help as much as we can
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I'm sorry to read that you have had progression Candy. Mara good to hear that you didn't hurt you ankle.
I've never had any problems with using Facebook, I'm only friends with family and people I trust and the few groups I belong to are all about airfryer recipes and the bargains to be had at Kmart and IKEA. It's the best way for me to keep up with my family back east now that covid has restricted travel.
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I’m on Facebook to keep up with friends I don’t see often and a couple of cancer groups but FB often puts me in an unhappy place, people are just so stupid. Instagram is where I post photos, which I’ve always enjoyed. Once we’re settled at the cabin, FB will be phased out for good.
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Kitty,
Wondering if you are getting any of the flooding I read about in today’s paper? It looked pretty bad.
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To All: in regards to FB. I just don't. I keep in touch with those I know through emails and phone calls. I don't care to rediscover people I knew in elementary school and I don't give a fig about getting a lot of "likes" about a photo I might have taken. I remember a cartoon ages ago in The New Yorker. There was a casket and three people sitting on chairs. The caption was "He had 500 friends on Face Book I would have thought more would have shown up" I actually don't remember the exact number but it was a lot. Social Media has much to answer for. I am so glad there wasn't any when I was a teen. Grade 10 was a nightmare and misery as it was. I know I would have been a victim of the worst kind of meanness.
The threads on BCO are sufficient for my support group outside immediate friends and family. I get my political information from BBC, CBC, PBS and yes - MSNBC.
I am a Pinterest person, though. I go there for things that really interest me.
candy: hoping for the best outcomes. We are all rooting for you!!
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Elderberry, agreed about being glad there was no social media in high school. I would not keep my yearbooks as I did not want to remember those years and would never attend any events related to my classes. I would have been mercilessly teased.
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Booboo, thankfully no, I'm way across the other side of the country, it's like the flooding is in New York and I'm in California. My son and daughter live there but luckily not near the worst of the floods. It's pretty heartbreaking to see all that destruction, lots of areas have been declared national disaster areas, they've had it so hard the past few yrs, drought, fires, covid and now floods.
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I am feeling some better today versus yesterday. Yesterday I was numb. Now I have thought about my options. Reading and researching. Making lists. We will see what happens next month with next MO visit.
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Candy you got some great advice on the ibrance thread. I’m glad you’re feeling better today. I love that you got that Candy fight in you making lists, researching etc. praying for the best outcomes.
Mara sorry you had that pavement trip. Once you fall you’re always so scared afterwards that it’s gonna be a repeat. Nice save with your string walking self. Gentle hugs and attaboy cuz you went and walked again!
Got my faslodex shots and blood draw low platelets; the nurse found me as I was checking out and informed me she didn’t know what the doctor wanted me to do. So I solved it and left. I contacted my acupuncture doctor that I have an appt with tomorrow and she’ll give me platelet treatment. She also prescribed beans basil and spinach. I made it the Mara way.
Facebook is a minefield. I’ve had family members who’ve had feuds with in laws etc in there. Steer clear. Keep scrolling or just leave it. I’m sure there’s lots of good but boy is there toxicityWaving hello to all
Tanya
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Candy, thinking of you and hoping for a solution that does not involve surgery. I don't have any advice; I am a complete dumb-dumb when it comes to all the different treatments for MBC. I rely on all of the more informed women on this thread to educate me. Thank God for them!
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Waving hello to you as well Tanya, the beans and spinach should help a lot with blood counts and with a bit of queso and cheese, can be quite delicious.
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Candy~glad to see you have wrapped your head around things more. The surgery was a heck of a surgery, but now I have no tumors. The thought of you being alone wrecks me , no one should have to be alone during something like this. I am very saddened at how things are sometimes.
Which brings me to my next gripe. People around you that get “used" to you being sick and almost use it as a be mean for free tool. Oh her being sick again. Well yeah I am. My body has been through hell damn it. I've been beaten down over and over again. That has an accumulation effect that no one understands. Well you're yearly scans you should be fine. Excuse me what? I take oral chemo two kinds daily thank you, and other medicine to even keep status quoe . We have cancer they say. No I have the cancer. You are feeling the effects of someone who has cancer and the opposite role that maybe I remember from raising two children as caretaker. I don't envy either. But I'm tired of feeling like my egg shells are mashed and are slippery. I have to have this “talk" with my son. And personally I don't even mind him here. I love him. I don't care if he's 24. I honestly don't. I'm slowly dying and want my people near me. I feel pressured to have him move. I know it's time to get the gears moving I don't want a forced situation. I don’t want my DH disrespected either. He doesn’t deserve that either. My physical being and state can't take the emotional wreckage after. I just want peace. I seek it but it never finds me.
I guess we all have a little of that sometimes. Not finding our peace. Our okay place mentally. And physically together. Like we once were before cancer rained it's toxic fluid into our lives. Now we hamsters March on the wheel. Never to stop.
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I cannot even remember how I felt before cancer. I know I was skinnier and rode an exercise bike for exercise in my room. I worked from home for a cell phone company and watched TV between calls. I was really good at that job. Once I got cancer, managed to stay on for a year. Had certain days off for surgery and also for chemo and the down day after steroids. Still did well for calls BUT then when my brain swelled up, started messing up on calls, having a seizure. I decided I had to leave it. I sort of miss working now, not just for the money but just the contact with people.
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Kitty, so glad you and your family are not affected. I feel so bad for those who are, though.
Mara, same here. Some days I think I’m dreaming all of this. That this can’t really be my life. But I’m one of those annoying people who try to turn it around and think about others who are going through worse times. I’ve accepted that this is now the cards I am dealt—so what now?
I also miss being around people. That part seems like it’s changed forever.
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I also feel for those who are affected, I count my lucky stars everyday that I live where I do.
My platelets were borderline today but thankfully they didn't postpone my Navelbine, I've got 8 more days till my next one, hopefully they won't drop any further. My tumor markers are still dropping, so I hope that means it's working, we are going to do a Petscan on the 19th April to see what's been happening.
I didn't have a regular job but I had a small cleaning business, then I fell and broke my arm so I had to let it go, then straight after that I found out I had stage 3 by so any plans to start back up again went down the drain, I was living in a very small town of 3000 people and my clients needed someone to replace me so I lost my job. I went on disability, then I sold my house and moved here to be closer to my youngest daughter and help her out with Finn, I had him 4 days a week until this crapshoot came back and he had to go into daycare which really gutted me as I missed him so much but it wasn't feasible with hospital stays and doc appointments.
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Oh Kitty, so sorry you had to give up both job and looking after your grandson. Too much we give up for this crappy disease. I will be in your pocket when they give you the petscan.
Well, it is gloomy and cloudy here but I just got back from my first walk. Hoping the stumbling nervousness goes away soon. I probably won't stumble as my leg is lift even higher. Still enjoyed it more than nervous. Only other outdoor walking I will do is go up to the burger joint to pickup my snack size mini burgers. I put peanut butter on them and they are so good. That'll set me up for my 10000 steps. Today was the first day I did not have to convince myself to get dressed and go, I just did it. Making progress I think.
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Good on you Mara for getting back out there, I love having Finn on the weekend, he gets me out and about, I walk and he rides his bike along the foreshore to get fish and chips and icecream for dessert, sometimes we go in the water and get all wet because it's never planned so we swim in our clothes and just change when we get home.
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Oh Kitty, he must love the unplanned swimming, and having a beach nearby would be awesome. You sound like a fun grandma.
As far as getting back out there, I need to because if my legs are stronger, I should be able to catch myself more often if I stumble. Not going to give up and live in fear. Short steps with lifting the right leg before I bring it forward should help prevent such an issue.
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So sad to read what cancer has taken from you all, from all of us. I spoke to my sister on the phone last night. Told her of the small changes to the liver mets. Explained checking into next steps and will meet with MO in 4 weeks. She said I should have the liver resection-- cut out the cancer. But she is not here to help me. So easy for her to say. Our relationship is tenuous--not a good relationship. I know deep down she cares, but not enough to keep in touch with me or help me. Sigh...
Anyway,,, today is going to be sunny and 70. So going to open windows. Make out bills. Review some things about the cancer choices. Maybe walk on treadmill.
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Hi to all!
Candy, I know this is a very difficult decision for you. And it's great that you are gathering information and questions for your MO. Bear in mind that a liver resection may not be an option for you -- as well as other types of local treatment. That is why docs take these issues to the liver tumor board. That panel of doctors is best equipped to suggest what could/could not work in your situation. For me, I was given only one option -- chemoembolization, aka TACE -- by the liver tumor board. The liver surgeon shut down the idea of a liver resection. And when I sought out a second opinion, another possibility came up -- that of microwave ablation -- which I then asked the IR about, and when he said it was possible, that's what we went with. That's why it's good to know what's out there and what it involves.
However, while I would continue to research so that you are an informed patient, I probably would not spin my wheels about my "preferred" treatment until you know if it's even possible in your case. If it turns out that you are not a candidate for liver resection, but you are anxious about it, then you will have spun your wheels for naught.
I hope today brings you some peace.
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Thank you BevJen. I just feel I know so little about the things out there. I am more comfortable talking about systemic treatment options. I wonder what all is considered for the patient? Age? Other health issues? Lab values? Where the mets are? How many? Interesting how the experts decide what could be an option for that patient. Then the issue of the pros and cons of the option proposed to me. There are always pros and cons. Side effects. Recoup time. Pain--- look at Nicole and what she has went thru after her local therapy. Could the treatment cause issues--- radiation and possibly zapping another close by area. Just a lot to learn and think about. And then wondering if you made the right decision.
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Ok, here is another thought. Thinking aloud. There is always discussion on the Boards about Stage 4 folks having a mastectomy. The horse has left the barn. And that most surgeons will not do a mastectomy on a Stage 4 lady. Not worth it. But..... they would offer to do a liver resection on a Stage 4 person with mets in the bone too???? I do not understand. If we cut the cancer out of the liver, we still have mets elsewhere in the body and that can spread. So, unless the liver is in crisis, then why do a large, complex surgery when we cannot rid the body of all the cancer and cure the patient?????
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candy, part of the reason to tackle a tumor in the liver is that it can directly kill a patient. A breast tumor - if if grows - can e eventually abscess or fungate leading to sepsis but that's a slower process usually. That's why visceral organ mets are so much more serious... So not just lowering overall tumor burden but also consideration of how dangerous a specific tumor is
But also, we don't actually have good evidence atm that these interventions convey OS benefit. In other cancers tho, whackamole with rads/sbrt/surgery does *seem* to have some benefit (I'm thinking prostate and colorectal which is where I hear more enthusiastic whacking of liver mets.)
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moth, that's an interesting point. It's probably why, when I asked my MO about getting a mammo on my remaining breast (got the reminder letter in the mail), she basically said, "Why bother?" I agree - I mean what would change? I already have mets to my bones.
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Good points, moth. Just a lot to consider. I know nothing in life has a 100% guarantee. But to go thru a large surgery, like resection, and then the cancer gets you anyway. IDK. Maybe cutting it out, if that is an option (like BevJen said), would be best. But, wow, surgery. And all the "whack a mole" procedures. Makes taking a pill sound a lot better. Just a lot to consider.
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Candy,
Well, the good thing is that you MO is at least thinking about your options, and is bringing your case to the liver tumor board.
When my liver mets were discovered in May 2019, I immediately began reading up on local liver treatments -- before I was even biopsied. As I was undergoing the biopsy, I asked the IR who was doing it what he thought about local liver treatments. He said enthusiastically -- yes, we do them all the time. Then he asked me who my MO was -- when I told him, he said -- she won't go for it. She never sends us people for local liver treatment. And then he made some comment about she "wouldn't allow it." That set me off big time. I ended up switching MOs shortly after that for a number of reasons, but when I started with my current MO, she said -- well, we usually like to do systemic treatments, but if the liver tumor board comes up with some sort of solution, sure, that would be an option.
I suspect that part of the two different opinions was that the two docs were educated multiple years apart. And also, interventional radiology, as I understand it, wasn't really that developed until relatively recently. Now I read everyday about some new technique that is being used in IR and helping patients out.
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