De Novo Stage IV
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seeq, none of my regular dr ever said oligometaatatic (or mention the words de novo either). But an intern wrote the word once. Only my sternum lit up in scans. No biopsy as that would require thoracic surgery. Hence the full on treatments
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dancemom, I was just thinking that could contribute to why they went on with surgery when most with Stage IV don't. I hope you're finding some time to rest and time just for yourself.
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seeq...I used to be ER+, Pr-, Her2+++. But my recent chest node recurrence changed me into Her2- Somatic (Gene mutation). It wasn't termed as Her2 low and I don't even know what that means.
However, I now have a spot in my liver and in my lung, and if they are mets, we don't know what they are.
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Denny - thanks for the clarification. I saw Her2- and Herceptin and I was confused. Everything about this damn disease can be so confusing, and then it morphs and it feels like you're back at square one.
ETA - For clarification, I'm taking about understanding the disease. My status has not changed.
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Denny123: No no no. You can't go 20 years then have something pop up!! Please keep us posted. We are rooting for you!!!
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seeq thanks. Denny 🤞.
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well, the bone scan results say stable the old Mets but showed new area in my chest wall which is pretty serious. I mentioned pain in my chest many times to current and former MO but they ignored and treated me like I am obsessed, the last 2 mri of thoracic also showed it but again ignored, so there we go now… MO wanted to change treatment which she wanted for awhile, I strongly disagreed, suggested radiation instead she said while your pain level is not above 7 or 8 radiation treatment is not an option, I was beyond angry but control myself, at the end I let her know that the way I was treated is like lost cause. They simply don’t listen don’t take the reports seriously don’t take action quickly and leave things until they become pretty serious, and it is their way. The radiology notified MO office the same day but she didn’t place referrals for further tests until I saw her a week after. Now I am waiting for my crappy insurance to approve. The radiologist mentioned that it was there in the last chest ct scan when they compared but I didn’t see anything like that in ct scan report, simply was missed. I hate this disease hate to be in weakness point.
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snow-drop: I am appalled how badly they are treating you. You are not obsessed. You have Stage IV and pains should be taken seriously and followed up. Then there is the insurance crap. I am so sorry that you are getting such a run-around.
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snow-drop...how terrible that you are being treated like that! I sure hope that you can get some relief somehow.
Elderberry---thanks. I had a chest node recurrence 10 years ago, so I am used to stuff happening.
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snow-drop, I’m sorry to hear about your recent scan and the way the doctors ignored you. I’m glad you are advocating for treatment. I’ve had the same experiences related to my autoimmune diseases. I have Grave’s disease and Sjögren’s syndrome. In both cases, it took literally years to get diagnosed correctly. I’m fortunate that my MO is very proactive, but I know how frustrating it is for doctors to suggest that your pain and discomfort is “in your head.”
denny123, the new liver and lung mets are sad news, but I’m hoping your meds will keep them in check like the chest node treatment
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Snow-drop, I’m so sorry this is happening. I don’t understand how doctors can be so cavalier about what’s going on and take action right away. I totally understand your anger.
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Snowdrop- it has to be so frustrating for them to basically ignore you, and then have what you were worried about come to be. It sounds like you're advocating well for yourself, but that can be exhausting, too. Does anyone go to your appointments with you? Do you think someone could help with the advocating? I'm so sorry you're being treated this way and for the progression. As an afterthought - could you get a second opinion about the radiation vs new chemo?
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Snowdrop: The way your situation was handled is unacceptable. Unfortunately, the insurance companies seem to dictate treatment, but would it be feasible to have a second opinion. I felt a lot better about my treatment when another MO looked over the case. I know time is of the essence but after your radiation it might be good to have a plan B. Sending hugs.
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thanks everyone for support and understanding, that means a world to me.
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Cyathea...thanks!
I have been getting Herceptin for 17 years, but for the last 2 years my health company switched me to Trastuzumab. For my last 4 infusions, I have had tremors and chills about an hour after I arrived home.
The chemo pharmacist has been keeping track of the lot numbers and trying to figure out the problem. But yesterday, I had just finished my tx, when the tremors started. My daughter had to come to pick me up. We think it might be an allergy and I took Benadryl when I got home. The tremors stopped shortly afterward.
My onc's assistant was talking about me taking a chemo break, but that sure scares me. I have been dealing with bad blisters from Xeloda because I was bad and ate corn on the cob. So I am skipping a few weeks of the Xeloda pills.
Doing my best to hang in here.
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Denny, I had tremors and many other issues as part of a bad reaction to my first chemo (taxotere, I think), that might be enough to get you back on Herceptin. I had big problems with taxol, then Kanjinti a couple years ago. It’s noted medically and with insurance, that biosimilars are out. Good luck.
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Dancemom,
I saw you had a mastectomy and lymph surgery. My onc says no surgery. Would you change anything to your treatment? I wonder if they did surgery because of you only having a few Mets. Seems treatments are so different across the board. I’m finding I need to be my own advocate.
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ddil. I think so many variables. I'm oligometastatic (as only one of my thousand drs once wrote on mychart.) My boob cancer was in the lower inner quadrant. I was scheduled for mastectomy, but then the scans lit up in my sternum and slightly in internal mammary glands. Suddenly I was going to appointments almost everyday. I am in a big C center so there was a lot of input from many specialists. I was told that I was the "star" of many interdisciplinary conferences. Surgery/meds/rads??? They decided a biopsy requiring thoracic surgery was overkill. The team together recommended the course im on - to treat aggressively as I'm not too old, am active, and have no other health issues. The various Drs would actually call each other on the phone while i was in the office with one of them. After 8 months on Ibrance (6 cycles with all the breaks as dosage was lowered) I had the mastectomy. Only my surgeon hesitated. I asked my MO why. SO was concerned that if all the treatments weren't successful I'd be upset that I'd gone ahead with the surgery. She needed to know that I understood that I still have cancer even though she would remove the primary tumor. Did standard radiation plus boosts on my sternum for a total of 34 sessions. Back on ibrance now. I am mostly worried about internal mammary glands. Of course the standard armpit ones they check were clean, They are FAR from the cancer! The sternum mets are closer...except on the left of center- tumor was on right.
Would I change treatment? I'm still in the middle of it all so I can't say. I have DIEP recon scheduled soon (I'm terrified). But scans first. Its all so time/energy/ thought consuming. The primary tumor is out so at least that can't ooze into more spots. The radiation and ibrance hopefully will stabilize the small spread that showed. The ibrance did keep the tumor from growing before it was removed. I wish it was like a broken arm. Set it, let it heal, do PT then move on. The never ending appointments are exhausting. But I'm still working, and still here with my family, taking care of kids and older relatives, so I shouldn't complain.
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ddil,
I'm going to jump in here re: stage IV de novo and mastectomies. My bone was an incidental finding on an unrelated PET about six weeks after my bmx. Since the met was grade 1 as was my breast tumor, we know that it was there all along so I am essentially de novo. I would not been offered a bmx had it been known that I was already metastatic. It seems that even when metastatic status is known up front, there are varying approaches to the surgery decision. From casual observation on bco, I still think surgery is less common in de novo cases.
Oligometastases? I had never heard of the term for at least 4-5 years into my own dx. At that point it was controversial as.many MO's felt that once you were metastatic that was it. No degrees of difference. Your horse was out of the barn. I think many more now accept the idea of limited mets and often recommend aggressive tx. My irony is that I have gone progression free for 11 years with only rads to the met and AI's. No chemo, no Ibrance, Verzenio or Kisqali! Go figure 🤷🏻.
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exbrnxgrl, funny, but your mention ti me of oligometastatic was the first time I heard the word. Only recently did young dr working with my RO write it. It all feels so random!!! I suppose that's why I was such a topic for the Drs. My hope is that once the reconstruction is done, I can go back to more normal thinking most of the time. You know, what should I buy for this weeks lunches type stuff, as opposed to how am I going to get up to pee after surgery without a recliner or electric bed?
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dancemom, thanks for sharing details on your treatment which is good to know that researchers are fighting for better solutions. Oligo metastatic term is used by younger generations oncologist who are mostly research based and willing to make changes, good changes, more promising changes, they might make hasty decisions sometimes as opposed to older generations of linear thinking of doctors who are so against any changes. Sometimes I think their mind frozen in the past. My MO is toooooo old school, I prefer not to open any discussion with her about those new terms.
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deny how are you doing? Sorry I missed your post. Please let us know how are you.
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I had my monthly tumor markers done yesterday. They are still high but holding steady, so my one year on Xeloda and Faslodex are holding progression back. Here’s to another year on these meds or longer, if my body cooperates.
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Kbl, stable is good news, here is t many more yearssssssss 🥂
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KBL - Yay for stable! Always a relief.
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Thank you, Snow-Drop and SeeQ. Much appreciated.
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snow-drop...thanks for asking!
I saw my onc yesterday but I had already figured out my problem and he agrees. I eat every 4 hours, and my dinner is usually at 3. But my Trastuzumab appt is at 2. All they have are snacks, and last Friday my snack was Oreo cookies and Sprite. I was thinking that it was low blood sugar! (duh). I really should know better! So from now on, I will take a sandwich with me and eat real food.
I am sure that I will do better. He checked over my last CT scan and the spot in my liver and in my right lung and still indeterminate, so he is not sure if they are mets.
My horrible finger blister and raw toe are better but he was horrified at the pictures that I took to send to my daughter. I was bad and ate corn on the cob for 10 days which is too high in folic acid. Actually corn is only moderate with folate, but I ate too much.
Someday I will get this all right.
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cyathea - thinking good thoughts for your scans tomorrow (ok, technically later today)
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I'll be darned. I was thinking no one has commented in a while. Then after reviewing my favorites (which De Novo Stage IV) was one of them, I noticed it was gone, vanished. What the heck. In any rate, KBL and the other group members who received good news, keep it going to lift up the other group members until they get there being stable.
Well after being careful, vaxxed to the max, wearing masks, etc, I got Covid this weekend. Low grade fever and dry cough. Called the on-call MO, who urged me to start Paxlovid. Day 2 on Paxlovid, no longer have a fever but still have the dry cough and a bad gin and tonic taste from the Paxlovid (guess it's a side effect). Fortunately, I didn't infect my dad, for this would have killed him with his treatment for pancreatic cancer. He is so frail. Be safe everyone, Covid is everywhere despite doing all the precautions, it still got me.
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