De Novo Stage IV
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Dear all, my Sandra's ultrasound went well - nothing is seen, except for 1 lymph node that is hardly seen and seems to be reduced/dead after the cyberknife (there were 3 before). Sure, it is just 1 month past cyberknife procedure, and ultrasound was recommended after 3 months only, so probably and hopefully the last LN will clear-up too. Yay, I am happy...
I think... aggressive approach is needed to start producing cures for stage IV, as systemic drugs and methods are still far from perfect. First cures will come at a cost... of our health:/ Unfortunately there's no other way:/
Saulius
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DanceMom, yay for no more drains. I hope you slept well.
Mozuke1, it was really nice to meet you. I hope your treatment knocks your cancer back. It takes some time for things to start showing improvement. Please keep us posted on how you’re doing.
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Saulius,
Great news about Sandra. I am so happy for all of you.
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Thanks dear BevJen... your words mean a lot to us. Also my father's MRI (throat cancer, stage II) is clear after almost half a year of treatments - got news today...
Dear DanceMom - yes, drains out!
Saulius
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Hello to Everyone
In case you're interested, we have another MBC virtual Zoom meetup today at 4pm, ET.
Register in advance for this meeting:
https://breastcancer-org.zoom.us/meeting/register/tZApdOmqrj0rGdLEsyEhPQzd0i_GAjFUdFuw
After registering, you will receive a confirmation email containing information about joining the meeting.
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Saulius, great news about your wife and your father, wishing all of you the best.
Dancemom, yay no more drain, one down, so next would be radiation- I guess?
I count surgery equally as aggressive treatment. Removing or killing cancer cells as much as possible should be a goal and then systemic treatments to prevent making new colonies would be better steps to be taken.
Mods thanks for the link.
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snow-drop, agreed, surgery, radiation, local treatment to met sites is all “ aggressive” for Stage IV since it is not considered part of standard of care that we all get. Initial chemo on the other hand, is standard for some of us with MBC, although we might start with a less harsh drug.
Dance mom, thanks for the Covid19 test link! And congrats on getting the drains out.
Saulius, good news, yay
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saulius, that's great news.
Everyone, thanks for the congrats 🤣🤣🤣🤣it feels so funny to be congratulated on a a random procedure! But they ARE terribly uncomfortable. And I appreciate it so much because I know you all understand how much all these stupid little things affect one.
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About this agressive approach: I asked my MO today whats next? And told her I wish I could be a fly in the wall at the interdisciplinary conference. That opened up a whole thing! Good news is that the pathology showed that the meds are doing their jobs. Lots of necrosis and the scattered active stuff's growth rate has slowed significantly in comparison with original biopsies. It was nice to hear that because i don't know if you can see necrosis on the scans? Just that it hasn't progressed? And she was very excited that the surgery "took it all out".
So what's next? Apparently there was not a consensus this time. (Surgery had been "unanimous" - except the surgeon was a little hesitant.) They are still debating. I asked how many on the conference? She said "well, I'd say about 40 of us". FORTY. I have to say I am so excited and privileged to be in a place where that many dedicated specialists on all the various oncology teams can get together and debate the options!!!! MO would like to see radiation on my sternum, intermediary nodes and chest wall, but not in armpit/neck nodes as there was no involvement there.. I mentioned surgeon didn't seem so gung-ho on radiation. Her answer "well, you are out of the box. We are really thinking about this."
I feel like they are really trying to figure out how aggressive is appropriate. I Know MO is fighting for as much as we can do. So off the ibrance for a while longer, even though it seems to work for now, and I'll see what Rads team has to say- gotta get that appointment!!!
Site seems to be healing. The taped areas are blistering though, so I am currently going tape free and holding the guaze with the tight surgical 'bra". ITCHY.
Goodnight 💤
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Dear Everyone, thanks for all of your best wishes.
Dear Dancemom, interdisciplinary conference? Wow, did I understand it correctly that this "conference" is like multidisciplinary team of 40 meeting to discuss cases, including yours? If that is so, it is spectacular!:)
Saulius
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DanceMom, that is great you have a big team looking at your particular situation and thinking outside of the box. I’m glad you’re healing after your surgery, but boo to blisters.
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saulius, yes it is a big cancer center. I knew that there were these conferences, but I thought it was just my various doctors teams. When I asked yesterday, she told me there are other people from every department at the center, oncology, surgery, radiology, pathology...its amazing! I've signed off on everything to have my info put into the research files. I know I am lucky to have such informed care.
Kbl,thanks!
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I agree with Dancemom on the conference: it helps give confidence in the treatment. In my center, they call these the “tumor board” meetings. My MO presented my case several times. At first it was to discuss the initial plan with a mixed case of HER2+ but low Ki and the presence of signet cells. Then later when they found the bone mets it was to discuss whether surgery and radiation should be done. They decided on both and even though I was concerned about the radiation on my spine after the breast radiation, I ended up following their plan.
I wonder if other hospitals do this and call it something different? Or maybe others do this and don’t tell patients because they don’t know that this can increase our comfort level with the treatment plan
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I don’t think my center has a tumor board. They’ve never mentioned it.
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I just asked my sister about it. She works in a public hospital in a different state, and they call it a tumor board. She said her department has weekly meetings, but she isn't sure how often the tumor board meets, it involves more departments. She would only go if it was about one of her patients.
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Hi everyone! It was so nice to catch up on everyones GOOD news!! Congrats to Dancemom and Saulius on the scan on your wife! Love to read good news for us all! Welcome to all newcomers, Im fairly new myself. Im thankful for this place, this thread, you ladies.
My case also goes up against the "tumor board" - I know they meet weekly but Im not sure how many of them there are, I will have to ask. Since my MO is of the aggressive approach due to my age and limited mets, he "pitches" (as I call it) his treatment plan to them. He mentioned at my last appointment that he would be bringing my case to them again. I asked him if that was for my pending radiation and he said no, for potential surgery. I got the feeling he wanted to start his "pitch" early..but I could be wrong. Makes me feel good that my care isn't just always in the hands of ONE person.
Im still dealing w/ my itchy skin and now I think Im starting to get a slight rash on the back of my legs from mid calf down. Its tolerable for now, and Im curious to see if on my off week from Kisqali it gets better. Im going to up the hydro whatever he gave me and I looked a few places for some lotion I know aveeno makes but couldn't find it so I will order on Amazon. Hopefully that will all help. I don't want to go off this medicine, I've had very limited issues while on it. It is always something!
I see RO next week and have no idea what to expect but Im ready for it all..I have to figure out how I can get on one of these Zooms during my work hours. I would love to put faces to names!
Have a great weekend all!
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eastcoasttowestcoast, I am curious what will be recommended for you.
I am soooo dry too! What cream are you using?My skin is literally flaking off, even though I coat myself in aquaphor a couple times a day. I was extremely thirsty all last week after surgery, plus its freezing so the heat is on, and this is my first winter on letrozole. Guessing its a combo.
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Mine has a tumor board. My brain tumors are discussed each time they pop up and the treatment plan is determined. My neuro rads onc jumps in on suggestions often telling what I do and don’t want. My MBC in general though hasn’t required the board as far as I know, it’s been pretty straightforward so far.
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I will have to ask about a tumor board. At this point, lobular is treated the same way as ductal. My treatment is pretty straightforward as well. I never have had it found in my breast, so there isn’t anything to talk about there.
I am on Xeloda, and the problem I have is just dry hands. It’s not bothering me at this point.
I’m so happy we have each other to bounce things off of
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Great discussion about tumor board.
My clinic is part of a teaching hospital, I know they use cases for teaching in classes. Once I asked my former MO about a tumor board for breast surgery, he only talked about my case with bs when he bumped into her on his way to clinic! My current MO is md, I don’t think she takes anyone’s advice or discuss my case with anyone. My bone Mets however is far more important than bc, as one of my vertebrae fractured and C spread to my spinal cord, which then I had to consult with neuro oncologist. Few months after radiation, mri showed 2 spots in my upper cord, suspected lepto disease. I think I am going to ask my neuro oncologist about possible tumor board, about local therapy or any additional treatment for my broken vertebrae (other Mets consider stable) as the tumor is pretty big- taken half of the bone, including the bone wall. She is young and open minded I don’t think my request would offend her but I have to wait until May when I see her on 6 month-following up appointment.0 -
Snow-drop, have you had testing for lepto? I’m not sure I’d wait until May to make sure it’s not.
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KBL, thanks for your reply,apologies my post wasn’t clear, those spots reported by radiologist as “suspected lepto”, it was almost 2 years ago, they decided to monitor them because they were unsure about nature of those spots (metastatic vs traveling cancer cells/ inflammation). I opened up this because even it seemed important I have not heard anything regarding tumor board discussion about the case.
I hope everyone finds something to enjoy the weekend.
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Snow-drop, oh, I’m so glad that’s been a while. I know lepto is not what anyone wants.
I’ve been in slug mode today. Not an ounce of energy. Been laying around all day
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I can relate KBL, being in low every few days, laying in bed and watching some comedy shows might work to keep my mind not go down. I hope your energy back up soon ❤️
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Thank you, Snow-drop. I’m always grateful when it doesn’t happen on my grandson day
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re: tumor boards. I know my case was discussed by a tumor board before I was ever seen by an oncologist. I had been referred, but my MO had recently moved from another state and Tricare was slow in authorizing him in Florida. Anyway, my GYN had called the onc office to follow up on my status and had that information for me. Apparently, my case was unusual since my liver was so heavily involved at dx. In have no idea how many people, or which docs were involved.
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Dear all, here at our NCI it is called the "Multidisciplinary Team Meeting". They are always held 2 times per week, and patients with their representatives (one person) are always invited - sadly not during COVID times. I have been in those meetings with my wife several times, and was very pleased to see how discussion goes on, and how consensus is met between radiologists, surgeons, genetics specialists, chemotherapy and radiation oncologists, and sometimes even immunologists. Your oncologist is always with you in these meetings, and his/her opinion, which was already before aligned with yours, is very important.Y ep, Covid has messed up many things:/ Saulius
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Back in 2008 when I was diagnosed de novo, my oncologist told me that there was a board who met at my hospital and every week they would discuss my condition and my treatment. There were oncologists breast surgeons, radiation, and other members affiliated with the cancer group.
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Wow, Saulius, you were able to attend those meetings w/ your wife? I would love to do that, I will have to ask my MO if that is an option for me, pre-or post Covid.
Hope everyone is doing well!
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Dear EastcoasttoWestcoast, yes, patients with anyone accompanying (they always asked for one person) were always invited/welcomed into multidisciplinary board meeting - hope this comes back after COVID. The board has the discussion before but then you are invited in to hear out "the verdict" or options, ask questions and get explanations. I really liked that. Of course, some people hesitate to attend but I personally liked it. Saulius
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