De Novo Stage IV
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KBL, I am glad you shared your frustration with us, we understand each other better than oncologists or anyone. I wish you a better day. Sending you hugs. A little I learned in this board from ladies and their experience: oncologists should present a reason(s) why they need to change medications- something like standard protocol- so that is why she ordered scans-despite she knew it might not show much- has she talked about faslodex as an option?
My MO canceled TMs testing, she doesn’t believe those numbers and I was (still am) obsessed about the numbers! I can relate when you said “telling MOs everything is fine”. Sometimes I quit asking anymore questions when I can’t be convinced by nonsense response, just like this....
Candy thinking of you....
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Snow-drop, see, that’s why we must say how we’re truly feeling. We are the only ones who understand. I understand that doctors see cancer patients day in and day out with no true understanding unless they’ve suffered with cancer themselves, which I would wish in anybody.
I’m sorry your doc canceled your TMs. Mine better never. That’s the one thing that usually is reliable for me.
Thank you for what I feel is such important validation when we know something isn’t right but others don’t get it. I appreciate this forum more than anyone will ever know.
I haven’t spoken to her about exactly what we would try first. I know I could probably go from Letrozole to Faslodex and stay on Ibrance.
Olma61, I’m so sorry I didn’t respond to your post. Thank you so much.
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snow-drop,
Even if you wanted more numbers, if tumor markers are not accurate for you then they are meaningless. If it’s any comfort, I have never had tumor markers done!
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KBL - I have thought about telling DR that everything is fine when it is not. Frustrated with very short cursory aapointments, and not getting "better". At last week's appointment, PA did not seem too concerned about a very recent development, a very swollen left leg, which gets a little better with elevation (but I can't go around all day with a raised leg). She felt nodes in the groin area, did not find anything, did not think an ultra sound was necessary. Lymphatic therapist put in an order for a high compression stocking, but so far DR has not forwarded it to the store who would get it. I switched to the same clinic that the oncologist moved to in 2019 because I really liked her, but I'm starting to think that it is time to switch again where the same clinic can do "everything". The one she is at is small, and I am getting tired of triying to coordinate things and feel like the ball gets dropped.
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BlueGirlRedState, that is ridiculous. I don’t understand what is going on. I’m so sorry they’re not listening to you. Swelling sounds very important to investigate. I would not let that go if I were you. I would be concerned about a blood clot. Please be very aware of anything that changes with it, and don’t let them poo-poo you. Swelling is not normal.
I think all these docs need a swift kick and a long vacation so they can gain some empathy back.
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KBL, I’m sorry you are dealing with eating issues and you are feeling frustrated. I’m feeling like I need to get out of my head’s way too. This is my first 3 month stretch where I don’t see the doctor, get blood work done, no tumor markers. My mind has been racing lately, I have a pain in my right side and the first thing I go to is cancer. My aunt is in hospice, ran out of treatment options for MBC. I’m usually positive but today I don’t feel that way.
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D37, thank you. I can see why you’re thinking the way you are. You’re seeing it first-hand with your aunt. I’m so sorry for her and you. If the pain persists, there is nothing saying you can’t get it checked out. It’s the not knowing why something hurts that gets us, and only we understand that feeling.
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KBL,
I went through a period of time last year when I was having difficulty eating and dropped 25 lbs. Nothing was ever found to be the cause and I kind of leveled off after a while. I still think that my appetite is diminished but I am no longer losing weight. I am only 5’ 3”, and have a small frame so I don’t have too much weight to spare. I find that I can eat only small portions so I try for lots of protein and nutrient dense foods. I also use cannabis as an appetite stimulant.
I know this is a strange thing to say but since you joined bco I kept thinking that your username reminded me of something. I was a Peace Corps volunteer in the late 1970’s in Afghanistan 🇦🇫. KBL is the airport code for Kabul. I guess the events of the last few days (I’ve been riveted to the news) jogged my memory. Sorry if the collision of current events and nostalgia resulted in a weird post
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Thank you for sharing exbrnxgirl. When I first started with this exact same thing happening, I didn’t find out for six months that it was cancer in my stomach. After starting Ibrance and Letrozole, it got better. I’ve never been able to put the weight back on that I lost. It just makes me nervous that my stomach is progressing, but, as usual, the answer will not come easy. My Alk. Phos. has always been below normal, so I do think there is malnutrition happening. My problem is not to mask what’s happening. I’ve tried medical marijuana to stimulate, but I can’t eat much, even if I want to.
When you say trouble eating, can you tell me what you felt? Food is not at all appealing to me whatsoever, but it might be because of how it’s making me feel. I just would love to know if the meds have stopped working. With lobular, there is never an easy answer.
I’m so glad your weight loss stopped. Our bodies are so strange sometimes.
Oh, boy, I had no idea my user name is the airport code. It’s actually the first letter of my first name and first two letters of my last name. It’s so sad to see what’s happening there.
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So I just remembered I had gotten a prescription of Pantoprazole in May that I did not use. I’m going to give this a shot and hope that’s what’s causing the issue before I go back to gastro. I will give it the two months I have if the prescription and see if it helps. Wish me luck.
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Hi KBL: You triggered a memory for me. I was on Protonix when diagnosed with gastritis. Hopefully this will help you.
This morning I'm vacillating about the booster vaccine. I had the pfizer vaccine 5 months ago and did have an adverse reaction to the first dose. Each day pending the source you read can be overwhelming especially since the data is not compelling enough for me to jump on the band wagon yet. There is conflicting information about antibodies test. I would like to see how much response to the vaccine, but is this truly reflective or how do I know if a booster will give me the additional bounce if needed (rhetorical ?). It's bad enough we have to navigate MBC modalities and now the vaccine booster. Always something...
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Tinkerbell, I was on it the first time I was diagnosed with cancer. I didn’t think it did much because my subsequent endoscopies all still come back with gastritis. It’s worth a shot, though.
Yes, it’s always something making our heads hurt with thinking.
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KBL,
I almost never feel hungry. Many tastes and textures that I once loved simply hold no appeal most of the time. It’s not that i dislike many of those things they simply hold no appeal. I also fill up after eating fairly small portions and stay full for hours and hours. I really only eat two meals a day but try to snack on fruit, veggies and nuts when I can. Yogurt is usually palatable so it’s always in my fridge. I am not losing weight anymore but I am definitely very conscious of making each bite count.
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I know that feeling well, exbrnxgirl. My poor husband. Not only do I not want to eat it, the thought of smelling it while it’s cooking sometimes makes it so I don’t want to cook either. He always says he’ll eat whatever. He’s so good to me. I was able to eat some things tonight without getting nauseous. Yay
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exbrnxgrl, I know, right! Without seeing those numbers I feel missing something!! and you served as peace volunteer, wonderful job 👍
KBL, I don’t feel hungry since after radiation, I just feel weak/ dizzy when I missed a meal.
NCYogi, please update us when you can.
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Snow-drop, I’m so sorry about that. The worst is we know we have to eat to live. My husband loves me dearly and begs me to eat. Today was a little better after I took the Pantoprazole. I’m hoping it’s a simple fix that I should have thought of sooner. I hope you do make the effort to eat even if you don’t want to. It’s the only way we get to stick around. Hugs.
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Hi KBL,
I’m sorry for the troubles you’ve been having. As far as not eating- I used to be a foodie but now I struggle to eat because of treatments so I understand the frustration and not being able to even cook food anymore. Something about all the mixing and the smells might make me unable to eat it once ready. My husband does most of the cooking now, and I may or may not eat it. I also demand praises for eating all my food, like a kid!
Things I can seem to eat anytime are Kix cereal, kind bars, PB&J, Glucernas, yogurt, and fruit…and French fries. I struggle a lot with chicken and meat in general - something about the texture. Cutting it into tiny pieces makes it easier. Need to eat more veggies but it’s been a struggle for not many calories. I can stomach green smoothies though with protein powder, yogurt, and nut butter for added calories. It’s kinda sad I just don’t enjoy food much anymore, but I can get some satisfaction with fruits and giving in to the rare craving for something. It’s an all-day struggle
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Kikomoon, oh, gosh I can so. relate to what you mean when wanting praise. It’s the truth. I love PB&J, have eaten so many since my youth. Can’t even think about it right now. I’m sorry you’re struggling as well. It’s not something that gets talked about enough.
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kikomoon,
Yogurt has been my lifesaver. I try to mix extra cut up fruit into it for more nutrition and calories. I am holding steady now and not losing weight but I still feel as if I have to make a very conscious effort to eat. For now I am not going to worry about it but if I start losing weight again… I was a bit of a foodie too but can’t get very excited about food now. My older dd just bought a house in Napa (CA), the wine and foodie capitol of our state. I hope to be able to truly enjoy some of what they have to offer!
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Candy, thinking of you, sending best wishes for your scan today.
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Hi everyone!
Thanks for asking about me Snow Drop☺️. I’m doing ok. Had my oopherectomy on Monday & yowza! I am sore. My neutrophils came up after another week off of Kisqali so I was grateful to finally get the surgery behind me. However, I think I underestimated the discomfort (sore from abdomen to shoulders). I’m better today so hopefully things will continue to improve every day. I’m grateful to have them out & no more zolodex.I’ll go back on Kisqali next week & then wait for scans in October. All in all, doing pretty well. ((Hugs)
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Snow-drop- Thanks for thinking of me. PET done. Should hear by next week. I posted on the Liver Met Thread and Mel's Living Room.
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Hugs to both of you, NCYogi and Candy.
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I am glad you are doing well, NCYogi, enjoy freedom from monthly giant size niddle of zoladex!
Candy, constantly thinking of you, sending you hugs and loves. You are a very caring sister.
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I am feeling a bit sad because my Breast MRI and CT scan showed that my original breast tumor has grown, and my tumor markers jumped from 37 to 51. Time to stop Verzenio and Letrozole. Before that I took Ibrance and Letrozole. I know most women can stay longer on these medications, but not me. I was diagnosed 1/13/20, and now I have to begin taking injections of Fulvestrant and Afinator pills. I used to be thrilled that my 6 bone mets were inactive, but now I feel like I am going downhill in my health.
I can feel the tumor in my breast sometimes, and it is aching. I asked to get it removed, but my oncologist says that it won't help me as the cancer is systemic. On Monday I will have a biopsy of the breast tumor and it will be tested for all sorts of genes to see if I have other cancers that can be treated. I suddenly don't feel that my life expectancy of 10 years will happen. I need a hug and a pep talk.0 -
Woodlands, I am sending you the biggest hug right now. I'm so sorry. If the tumor is causing pain, I wish they would remove it.
Please let us know how the biopsy goes. Did they say it's still only in your breast and bones? Since both meds you've taken are CDK4/6 inhibitors, maybe a different line can knock it back. Another hug.
My tumor markers are 364 and 111, and my CA 125 is 1400, and I’m still doing okay. I hope it helps to calm your fears
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Woodlands: did you consider obtaining a consult with a Breast Surgeon ? My breast surgeon, who I've known for nearly 15 years, has a different opinion then my Medical Oncologist when it comes to having the primary tumor removed for de novo. IMO it may not change the outcome having the primary care tumor removed (research varies on this issue), however I feel why not have it removed, your body, your life, as long as no major harm comes about. In regards to tumor makers, my BS and MO, do not order them. I'm not sure how much of an impact tumor markers have on the overall picture (more data?) Hopefully the breast biopsy provides more information for treatment choices.
Hang in, I know it's rough, one day at a time.. Big hug..
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Woodlands - you may want to get a second opinion on that. If its only the breast tumor growing, then why not have it taken out and remain on the current treatment if its holding the mets steady? My MO won't take mine out now either, but if it starts to grow then surgery is on the table. I believe Philly had hers taken out when hers increased as well.
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Woodlands,
While true that removing tumors in the breast is not usually done at stage IV, it is done on occasion. If it’s causing you pain and there is no non-surgical remedy it seems like you might be able to make a case for surgery. Take care
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Thank you to all the kind people who helped me out with your ideas and loving suggestions. I know the road with MBC is always worse when I am changing meds or getting a new report that has changes in my condition. I feel much more relaxed now and ready to have the biopsy tomorrow. I really appreciate your support.
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