Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
Well, slept lightly but it was fine, weird dreams too, must have been influenced by IT Welcome to Derry, very gory and bit of a scary show. If anyone read IT by Stephen King or watched the 90s miniseries or movies, you get the idea. I do not mind, my dream involved saving the protaganists. This what I was thinking about drifting off and when my alarm went off.
I have my Herceptin today, I accidentally booked the Paratransit early by 30 mins, not done on purpose but depending when I get there, may take a stroll around before check in at 1130. I am sure my sore muscles would appreciate it. Was pretty sore in legs and shoulders from walk with the walker Monday. I broke down and took advil last night and did fantastic stretching this morning with legs spread as wide as possible, same stretch for arms too. Also did bridge pose which to me is like a squat in bed. Brought knees to chest 10 times but forgot to pull myself up to sitting with the bed ladder. Later today, moving wet dry vac and instant pot into a large container, clear up bathtub which has all the washing machines in it. Have not had any clogs since the plumber fixed it.
Unsure about food, I did not have an egg last night but actually just had an english muffin with garlic, bit of butter, shredded cheese and some of the cheesy seasoning from old elpaso. Will save that for when making up a burger. Not sure about breakfast today. Might just be a meat pie, easy thing to make, save egg for a meal in frypan with preheated stirfry. Also got some of the spicy bbq chips from Walmart, thinking they could be ground in spice grinder and treated like an accent, the flavour is just too much for me.
I am still doing well, got a second call with social worker in two weeks in the afternoon, no plans or asks for service because no treatment plan is in place yet with neurosurgeon whom I am sure would need to email or phone due to a postal strike happening.
I am in everyones pocket, still my own to maintain calm between getting on with my own stuff and just life in general. So far it is working.
Re: HER2 Positive-anyone 10 years out?
hi everyone, I'm at a cross roads with treatment decision. im diagnosed with mild foci of idc and dcis which was classified as stage 1 er&pr negative her2 positive breast cancer my oncologist recommend no chemotherapy no radiation and told me the targeted therapy with herceptin is in a grey area, is there any ladies out there that has refused herceptin and how are you doing now? also for the ones who did what side effects did you experience im especially worrying about the effects of the heart.
Re: CA 27.29 elevated
Kaynotrealname: Thank you so much for the reply. I'm not sure why it's being tested, but I will be finding out. I'm considered high-risk for recurrence with an Oncotype of 28. Maybe that's why?
Re: Extreme tumor markers (CEA, CA 15-3)
Dear norah2024,
Thank you for asking. She received Trodelvy treatment until late November 2024. After the biopsy in early December, it turned out that the cancer was active again, but now it's 100% ER+; earlier, it was 95%. So, she has been receiving Kisqali again and Letrozol. If it kicks in, that would be great; another option would be Enhertu because the biopsy showed it was a Her2 low type. She is now in Patagonia, but her liver enzymes were quite elevated, but she thought it was going to be ok for her soul. So, I hope, she was right… :)
I hope you are doing well. I hope they can control your bone mets effectively.
peter77
Re: Stage IIb and 5+ years out, anyone?
Houston2016 - I thought I should share my experience with reconstruction. I had a unilateral mastectomy with tissue expander placed. I felt that TE every day for the 15 months it was in my chest. I had DIEP flap reconstruction and can honestly say recovery was easier than my mastectomy. I had two nights in the hospital after each surgery. I was back at work six weeks after mastectomy and five weeks after DIEP. Going into each surgery i was relatively fit and active, exercising daily and working full time. I was 55 at diagnosis.
If you think DIEP is for you, talk to a PS who does this and ask for honesty. My PS promised me “pain” for two weeks; I took nothing stronger than Tylenol after 8am the morning after surgery. I took walks around the block beginning the day I returned home (Friday after Wednesday surgery). It’s not an easy surgery (what surgery is?) but don’t let the online horror stories prevent you from exploring the option.
Runrcrb
Re: How long have you been Stage IV?
I'll start my fifth year at stage IV in July. Originally thought to be stage II but bone met was was discovered by accident 6 weeks after bmx, so we know it was there all along. Never had chemo, just rads to the femur and AI's. It is bizarre when I think of it because my life is largely unchanged, but I do have MBC and things can go south at any time. I'm definitely enjoying it while I can.
Re: STEAM ROOM FOR ANGER
Glad to see you here Lisa. I wanted to vent my feelings about Becky in the other group and realized it wasn’t quite appropriate. But here it’s okay.
I’m in tears. I’m angry for her. I’m angry for us! Damnit I’m just angry too. This disease sucks! I’m feeling very self destructive. I’m not really sure how to explain it. It’s like wanting everyone to feel angry too. To pick a fight and yell and punch. What do we do with these feelings?
I just told my PCP on Friday that I couldn’t remember the last time I took an Ativan. I think I need one tonight.
Re: Have you experienced PTS or PTSD following a breast cancer diagnosis?
I think I have PTSD from my mother’s bout with breast cancer long before my diagnosis. I was 23, she had always had dense fiber cystic breasts (i am the same) and been checked regularly to my knowledge cause i remembered going to some appointments with her. I got a phone call one night from my brother, (just a few months after being married, buying a house and just starting a new job) that our mother was in the hospital, she had just had a double mastectomy! I knew nothing about any of it! diagnosed in the fall and passed away in february at the age of 55. I have been terrified my entire life and never missed a mammogram. i was diagnosed in september at 55 and it’s been very difficult to handle. I caught it early and I have a very good prognosis but I’m still having a terrible time processing this. My husband thinks I’m overreacting since i have such a good prognosis. He doesn’t understand why I’m feeling like I am. All I can think of is PTSD.
cables5
Re: Bone Mets Thread
I used to do PET scans before, and the last one showed a significant regression in the bone lesions — one of them even disappeared.
But I don’t understand why my doctor insists on doing an MRI. He says it’s more accurate, doesn’t trust the PET scan results, and claims that the PET might miss or fail to capture certain areas — that it could even show no uptake in a spot that is actually an early lesion.
My problem with the MRI is that I’m severely claustrophobic. I’m terrified of closed spaces and of having a big machine right above my head — it makes me panic.
Neither the anesthesiologist nor my husband understand this, and they’re surprised when I ask for sedation, even though I know I could have a panic attack if I’m forced to stay still for a long time or be in a confined space.
They don’t understand this at all, and I constantly get questioned about why I need sedation.
Even today, the anesthesiologist told me they only use it for children so they don’t move.
But I’m sure there are many people like me — I just don’t understand why they think I’m a freak.
I’ve scheduled the MRI for next week, and I’m very anxious about the results.
Re: Stage IV NED crew : lets support each other
@heidihill Well, I have returned from my PET scan, had Olive Garden take-out (I was famished), and have the results of the test. No evidence of metastatic disease!! Yay! The only thing of note was "Multifocal ground-glass pulmonary opacities with mild hypermetabolic activity, most consistent with an acute infectious or
inflammatory process." Just FYI: I did have "something" several weeks ago where I felt absolutely horrible. Lots of sinus issues and coughing. According to some online searching I've done, this is the most likely culprit and can take some time to disappear from scans. Not too concerned as I am feeling better now, but as I mentioned earlier, I take a long lime to fully recover even from mild sleep loss or eating at the wrong time. I must get back to a normal routine.
Hope everyone is doing well!
Hugs, Pam 💗
