De Novo Stage IV
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Saulius,
I agree with your thoughts. Some IIIC could have been stage IV due to the lack of quality diagnostics. Diagnostics now are still not perfect and a lot of stagers to your point do have progression. I do believe the FES PET is changing diagnostics for those of us who have lobular which is hard to find on regular scans. Additionally, I think we have all heard DeNovo’s have a longer line of meds available since none were used previously. I’m hoping stage IV’s do live past 10 years. Everyday there are trials for more ground breaking drugs. I look at the success your wife has and I believe she’s NEAD IF not even NED. I know we chatted about the liquid biopsy Circulating Cell Count, which if accurate could help determine how many active cells there are, which would help guide treatment. Even if many do not see the term NED or NEAD, it doesn’t mean there is progression. Being STABLE is GOOD too! I personally wish doctors would treat with curative intent even if they may not think it’s possible but to shoot for it anyway. We are not a lost cause because we are stage Iv, anything is possible. I see it with many who I’ve connected with.
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ddil,
I am a 10+ year stage IV patient. I have not only survived but I have had no progressIon since initial tx. I agree that newer drugs, none of which I take, have helped but there’s far to go. Better imaging will be helpful to many particularly for areas that cannot be biopsied. I remain optimistic for the future but at present, without knowing why some do well (as in my case) it still feels like a crap shoot. I basically feel as if I’m simply a lucky outlier
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Dear ddil, I absolutely agree with you - stable is super good, and for sure stage IV is not a lost cause. Most researchers have already agreed on this, and now it is turn for clinical oncologists to recognize that because when I talk to scientists, they say - wow, such people can be cured, and when I talk to clinical oncologists, they say, nah, stable disease. In fact, cure is difficult to prove, as we cannot disassemble every single cell in our body and check if it is cancerous or not. Secondary methods have to evolve, and they are evolving. Same like dark matter and dark energy - we cannot touch it, we cannot see it but we confirm them by indirect methods. By the way, has anyone seen the REAL retouched microscope image of human cell (I posted it on another thread)? It was presented after much work by Angstrom Images: wow how complicated we are: https://angstrom3d.com/cst-molecular-landscapes
Saulius
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saw this today.. let’s hope it work
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saw this today.. let's hope it work
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Exbrnxgrl,
So you’ve been only on the original med from the beginning? Do you mind sharing your dx and med? You are inspiring.
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i tried to modify my dx line after the site update but it was a mess do I simply deleted it.
I was dx’ed with bc in the summer of 2011. After a bmx, I was staged as IIB but six weeks later an unrelated PET revealed a met to my upper femur. A biopsy confirmed confirmed it was bc. My medical team is in agreement that it had been there all along as it was 2 cm but a grade I as was my breast tumor. I had rads x15 to the bone met. I received infusions of Aredia, an older bone strengthener, for about 3 years. I have been on all of the AI’s, in hopes of eliminating se’s, I am currently on Exemestane.
I am not trying to be modest but I am not entirely comfortable with being an inspiration. The reason is that I have done nothingunusual or out of the ordinary to achieve my longevity. I just got lucky, but thank you all the same.
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On the topic of circulating tumor tests, if they can find an accurate one, that will be a big step. The STOP-HER2 trial at Dana Farber is going to use the new Signatera test to help determine which HER2+ long term NED survivors might be able to stop anti-HER2 therapy. Note, in a podcast interview, one of the researchers said if a participant is estrogen postitive, anti-estrogen therapy would continue. Just the H/P that we take may be able to be stopped at some point.
I've also heard talk of trying to figure out how to detect dormant tumor cells that may have escaped the breast and are undetectable, detecting cancer stem cells in the blood or body, etc.0 -
wow, saulius, that cell photography is amazing. Thanks for sharing once again!
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Dear Olma, thanks for reminding us about STOP-HER2 and other techniques to detect remaining disease... As drugs and techniques evolve, this is really going to be a big task to determine who can stop, and who has to continue. There are some crazy questions... like, let's say, what happens now with these 16% Cleopatra patients who got NED and are still NED after almost 9 years on HP? And yes, the cell image is also crazy:) Life is crazy, isn't it?:)
Saulius
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Exbrnxgrl,
You may not have done anything out of the ordinary but the luck you have gives others hope. For those of us with newer diagnosis we don’t know what’s possible. Stories like yours demonstrates what’s possible even though we are all different. I believe you are ogliometastatic having only one met and I know things can go very well. I have 3 Mets w/ lymph involvement. Saw a radiologist oncologist yesterday. He said I’ve responded well to meds. I’m finishing up my 4th month, I need to give it more time to stabilize. He would then suggest a lymph removal with radiation then check the 3 tiny Mets which may be gone. Then just manage it like a chronic illness. So I’m hoping this plan works.Hearing and seeing results others have does make it inspiring to me. Thank you for your response. Love hearing stories like yours. All the best
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ddil,
You are very kind. I wish I could offer something more concrete than the fact that I have survived with no progression for over a decade. Yes, of course I am oligometastatic. BTW, that term was rarely used a decade ago
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hi all, sorry I interrupt joy of NED discussion, I really want to be one of those NED.
I have question, the follow up mri of my spine, accidentally (?) showed a weird abnormality size 2 cm in my lung, it was 6 months ago, since then I took 2 scans but nothing new was reported, again my neuro oncologist showed me that abnormality in the recent mri. I think the abnormality is right behind breast tumor, so is it possible that the ct scan is not able to capture the abnormality that I assume hidden behind the primary tumor? If ct scan can’t see that what other better test is available? I am worried and confused. Don’t say what MO says, she doesn’t look at the imagesjust quickly reads the report and says “stable is good”.0 -
Dear Snow-Drop, sorry you are in this situation. It is definitely not possible that CT scan with contrast does not pick up 2 cm malignant feature, as CT for lungs is the ideal technique. Primary cannot hide other lesions, as imaging techniques make both X/Z slices. MRI and CT are not so easy to compare. Have you ever had pneumonia? I know some people who have had heavy pneumonia long long ago (when young) and their lungs show abnormalities (scars) on X-Rays/CTs. From what you have described I don't see how this abnormality could be malignant. Could you repeat the MRI (with contrast)? If that feature is stable, I think malignancy could be dismissed. Does that make sense?
Saulius
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thank you so much Saulius, for explaining in details. I have taken spine mri with contrast every 6 months for a while, this abnormality reported only 6 months ago and showed again recently but this time radiologist did not report it.
Thanks again,All the best for you and your Sandra.0 -
Hi, all! I’m a little MIA, as my daughter and her husband and my grandson moved in while their new house is being built. It’s been quite the transition, with my grandson and daughter having it the worst. My grandson has been waking up screaming for Mommy every night lately, and it’s wearing on both of them.
Snow-drop, I’m sorry I can’t help with your question, but it’s good to hear from you
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EXBRNEXGRL,
I still don’t think they like to use the term Ogliometastatic, some doc might but not all!
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Anyone have back/hip pain like nerve pain down the leg? I went bike riding a couple times and I have extreme pain like a nerve in my back/hip area shooting down my leg. Standing up from a sitting position is painful and sitting is painful, once I get up it feels better. I have an MRI Monday. But wondering if its meds, or sciatica. Doing ice/heat on and off. Had FES/PET April 26th nothing lit up there. Praying just a normal issue
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Hi KBL, transition is different on kids, they can’t explain their feelings as adults do, do you think a sound or light makes him awake? Something that is new to him? if I recall correctly your grandson loved to spend time with you in your house. I am sure he will adjust soon. Thinking of you.
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Ddil - I get something similar,but not shooting down the leg. I suspect its likely piriformis or other glute (minimus I think) related as they come near nerves. So a swollen muscle from exercise (or overworked due to return to exercise after time off) + likely compensation of muscles due to spine issues and voila!
Ice/heat will work along with gentle stretching (look up figure 4 stretch) of the area and light massage (do you have a tennis ball? or a foam roller?). I will take my spiky massage ball and stand near a wall with the ball between my butt and the wall and roll around until I find the spot that is tight and then focus on that for a few minutes. Ibuprofen too to reduce inflammation.
You may want to find a good physical therapist who can help with massaging/stretching the area and figuring out ways to strengthen too.
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Hello, all,
We have organized a new meet-up for people age 45 and under with a metastatic breast cancer diagnosis and wanted to let you know in case you would be interested in participating if this meet-up description applies to you. The meet-up will be run by Julie Kramer, who had a metastatic diagnosis of sarcoma in her 20s.
Under 45 w/ Metastatic Breast Cancer
When: Thursdays at 1pm, ET (first meetup is May 26, 2022 1:00 PM Eastern Time (US and Canada)
Register in advance for this meeting: https://breastcancer-org.zoom.us/meeting/register/...
We hope to see you next Thursday, and please share with others who may be interested in being part.
-- The Mods
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Snow-drop, it's definitely a huge transition for all of us. His mom and dad are out right now, and my husband and my grandson are in his bedroom laughing up a storm. Lord, I love his laugh. It's a totally different dynamic when Mom and Dad are here. I give him too much attention for sure, so I will be working on that. I haven't had great sleep the last few nights, so hopefully tonight will be good sleep. He did great with sleep last night after throwing a huge tantrum for nap yesterday afternoon. I think he realized he wasn't going to win after he threw everything out of his crib. He will get there. Grandma had to go outside because it hurts her heart to hear him upset. It's only been three weeks. I just need everyone to settle in.
DDIL, I had horrendous sciatica after my car accident. It hurt so bad. It sounds like sciatica to me, but please don't take my word for it. What was amazing was when they told me I might have cancer back in 2013, my sciatica was the furthest thing from my mind and cleared up. I hope it's something you can get relief from.
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Catching up after being away for a little while, snowdrop, I just wanted to chime in that I hope your lung nodule remains stable. I also have lung nodules that are monitored with CT. Mine are smaller, though, so perhaps nothing to worry about. The original CT reported, “Nonspecific scattered pulmonary micronodules including a 2 mm left upper lobe pulmonary nodule and a 3 mm right middle lobe pulmonary nodule.” Subsequent reports don’t mention the specifics, just that they remain “stable” or “unchanged”. I haven’t really thought much about these nodules since my MO hasn’t mentioned them, so I found it odd that my primary care physician indicated “lung cancer” in his visit notes from my annual hysical.These nodules are too small to biopsy so there’s no way to know for sure whether it is cancer, so perhaps my PCP was just making an assumption based on my bone lesion.
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Thank you, I just talked with my onc. He wanted to do radiation but I opted for physical therapy! I think the xcheva and exercise might be the culprit, as it came on fast. The MRI showed healing in my Mets only a few seemed like they are still active and in the process of healing. Onc, showed me the imaging you can see where they are healed it looks grayish. So I guess that’s good news. I appreciate your response. I’ll try the tennis ball to.. as long as my dogs will let me, without trying to grab it.. lol! It’s their ball so I need to borrow it!
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hi Kbl,
I missed Monday virtual meetup. I hope everyone was doing ok. I think of all the ladies frequently. I hope things are settling for you with your daughter. It’s always an adjustment and a life change for everyone when you need to live together again. My MRI showed bone Mets healing. But onc thought radiation would help. I’m going to do physical therapy and not bike ride! I thought I was helping but thinking now of the motion of moving your legs to pedal and the strain on your back I think I could have hurt something. I haven’t rode a bike in years! I’ll give it some time as I know sciatica or anything else will take weeks now to get better.
Thanks Kris hope your doing wel
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Yes, I missed seeing you on Monday. So sorry you missed. Can I ask where they give you the Xgeva shot? It’s probably not in butt. I know with Faslodex, if they shoot it in the butt, sometimes they hit the sciatic nerve. I know the sciatic pain well. It’s killer. I hope it gets better
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My Xgeva used to be in my upper arm, probably same for everyone, but correct me if I am wrong. : D
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hi cyathea thanks for your post, do you have any sort of shortness of breath or other symptoms?
My xgeva goes to my upper arm, the needle is small and the med goes under skin no deep injection. After injection I have several days of fatigue and low energy.
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I get the shot in my left arm and consequently it’s my left side that hurts. Seems the gabapentin is helping along with Tylenol I feel better today and I think I will stop bike riding it may be putting strain on my back muscles I have not used in a long time.
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hi all! About sciatica and back pain, as a former professional dancer, I unfortunately have loads of experience. I have scoliosis, hyper mobility, sciatica, and overuse tears. If I keep my back stable, my hips, knees and ankles tend to function alright.. After recent mastectomy it was tough because I couldn't do most of my stability excersises.
I highly recommend a few simple core excersise daily to stablize your back. Most people think "situps" but those are upper abs. Backs require lower, inner strength. Kegels are the best start ( stopping your pee). They are very deep inner muscles. Then once you figure out how to engage those, start all excersises by engaging those first. DeadBug, pilates "100s" and yoga Bird Dogs, all done with consciously engaged lower abdominal are my go-to to keep my back stable. (Easier to look up videos of those than to describe) none of these are physically demanding, you need to be able to lie on your back on the floor (I attempted it on the bed after surgery, and while I suppose it was better than nothing, it really doesn't work. Once drains wer removed,, I enlisted family members to help me to the floor.)
I get exgeva in the back of my upper arm. No clue about reactions to anything anymore cuz I basically feel 100 years old and stiff and tired since this all started.
Oligometastic- first time a dr used that term for me was my RO's intern when doing rads planning. None have ever said De Novo, but my initial diagnosis was stage IV.
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