Best Of
Re: How long have you been Stage IV?
Stage 4 DeNovo - 16 years. - mets to lung and spine.
Herceptin and Arimidex from Day 1.
Currently, every three weeks, herceptin and arimidex
Re: De Novo Stage IV
Thanks all, for your concern and my infusion went well! I had a pre-drip of saline, which was almost the whole bag. And then I had Herceptin for an hour. And NO shaking! I do realize that it could be different each time, though.
When I got home, I was very tired, but my BP was at a normal level, and my fever was only 99. My nurse did tell me that if I didn't do well, the next time I could have a steroid injection into my IV. So that is another possibility.
Speaking of bells….I was Stage 4 from dx, but my 3 liver biopsies missed the liver tumor. I had my dmx, chemo and rads, and then (back in 2003) the nurses threw confetti at me and sang (poor cleaners had to clean that all up). That was before bells.
Then, a few weeks later, my CT scan showed that my liver was filled with tumors, and I have been on chemo ever since. Several years ago, I lamented that I would never have another confetti party again, but the next time, the nurses gave me another confetti party since I was NED!!!
That sure was a teary-eyed experience and I never thought that I would still be battling this stuff after over 22 years.
Re: De Novo Stage IV
@snow-drop I recently had the same situation with a radiotherapy failure with SBRT to my hip. I don't know why it failed, I don't even know exactly where they were targeting (I had very small burns show up in areas that um, wasn't expecting) and they spent months after doing the watch and wait to see what was going on with that patch - if it was inflammation or infection or cancer or what. I kept getting the 'well its just inflamed still from radiotherapy and that can go on for four months' while my walking deteriorated and I felt worse and worse. Eventually I did get a fresh bone biopsy out of the hip a few weeks ago and that is what showed the HER2 change, but there may have also been some infection in there as well that got cleared out when I was put on a lot of antibiotics. In short, a real mess when I was expecting to have a few shots of radiotherapy and be on my way from November. Frankly I had never heard of RT failing, but it will make me more cautious and demanding of more information in the future. BTW my cancer was also making its own fevers, always at the same time of day, and always when I was just about to take painkillers. Two doses of chemo and it seems to have stopped, but its uncomfortable and I get what you are going through.
You know, no one mentioned to me anything about having to wait 6 months post RT to do something else. Instead I was told at scans in March to 'watch and wait' and I almost lost it because I was already in so much pain and housebound that there was no way I was going to make it to June before someone decided to 'do something'. But that kinda fits with the timeline you are saying here so I wonder. Ugh, I just wish the British were more communicative, it would seriously save a lot of pain and anxiety!
Funny you mention ringing the bell. I don't think we have a bell at my hospital, but yesterday I was thinking I would damn well ring it at the end of this course of chemo because its been a haul to get to this point and I want to celebrate that I made it through. Never used to think like that!
Saulius - thank you for your well wishes, I think I will stick around on this thread a bit more!
Yesterday I took my first walk around the corner and to the end of the block. Had to rest a few times and I was tired but I made it. Talk about completely deconditioned! It wasn't the most comfortable of things but I need to keep going to get back in shape, so again we go tonight. Funny how a walk to the end of the block is an achievement when a year ago it was just something I kinda took for granted.
Re: MBC and working
harrow,
I have no great words of wisdom. Despite the uncertainty, once my medical leave was over, I knew I simply couldn’t sit around and wait for the other shoe to drop. That would have been tantamount to putting my foot in the grave before I had to. None of us know how the course of mbc unfolds so I simply decided to start living and not sit around waiting to die.
I was very fortunate and unlike many here who wish to keep their mbc private, I encouraged folks to ask me about it directly. Firstly, I didn’t want to give cancer more power over me by treating it like an unmentionable secret. Secondly, by being completely open there were no rumors, gossip, nor any type of pity. I set the tone that bc is nothing to be ashamed of or talked about in whispers. It’s a disease that needs to be treated, period.
The response? Kindness, compassion, and lots of food!
I understand that not everyone is comfortable being so public. It’s a very personal choice. Since I am comfortable, I aimed to remove some of the stigma surrounding cancer in general and bc specifically. I do think knowing your audience is important. I was a teacher and my school community is very close and supportive of families and staff. And doing that is what got my life back to a new normal (let’s face it… pre-mbc normal is not coming back). It’s different for each of us but like all major life changes, you put one foot in front of the other and go forward, even in very small steps if needed.Take care
Re: MBC and working
I missed the replies on this somehow. Sorry about that!
@cure-ious that’s exactly how I feel. I don’t want my diagnosis to be what people see and think when they see me. I just want to be me. Although, I feel like I’m not sure who that is anymore. I’m not the same person I was pre-diagnosis.
@dulcea thank you for sharing your working experience as well!
@amel_83 I’m sorry you lost your farm but I’m glad to hear that you’ve found a silver lining in all this - more time with your 3 year old and reading and drawing.
Does (or did) anyone feel like they’re pretending when they went back to work? Like, how can I restart my regular life as if nothing has happened? It makes me feel like I’m putting my head in the sand or something. How long did it take for you to feel more “normal”? All the uncertainty that comes along with this disease is very difficult for me to accept. It’s a work in progress for sure.
Re: My Husband, My Life, My Love, My Family, My Cancer
Hello and good morning ladies. Today is my 54th birthday. I’m awake early with all the years with my mom rushing by me. This is also going to be difficult for me. She would call every year at the time I was born. When that phone doesn’t ring today. My heart will break again. I never imagine grief could be this hard. I hope all you ladies have a wonderful day.
I am so sorry about the kitty. That just plain sucks. I hope she turns up soon. I really do. Sometimes if cats are knowing it’s their time. They go away to hide. It has happened with a few a my cats when I was a young kid. I am sending you hugs.
Hope emac is feeling better. Sondra , you too. Love to all!
Re: My Husband, My Life, My Love, My Family, My Cancer
@threetree Oh what a sweet memory and I'm glad it bought that sweetness back to you. My Grammy use to say "rise and shine you lucky laddies and lassies". PopPop and Grammy were raising 4 of us for a period of time. They taught us the love of outdoors, fishing, reading and Jesus. We were so blessed to have them and another set of grandparents with their own teachings.
It was brutally hot here today , 92. I had my lymph P.T. and it does seem to be making a difference. I did inquire about lymp massage therapy and the one therapist will ask around. Not just any massage therapist, it must by a certified lymp therapist.
Cleaned up the garden a bit tonight, refreshed water and food for wild animals and called and searched for Bootie. Perhaps she found the right space to curl up and pass. She did not seem ill, but cats do develop urinary and kidney problems quickly. She was in my bedroom on my lap the night before she disappeared and I groomed her well. She seemed fine and happy. She used the litter pan I set up when she is in my room and all looked normal. Guess I'll never know.
Thank you all for your kindness and I hope all are safe and have a pain free lovely Memorial Day weekend. In your pockets.
Laurel
Re: Ibrance (Palbociclib)
Aprilgirl1. I agree.
I have been on Ibrance for about 18 months I keep thinking about how long Ibrance and letrozole will keep working for me. I wish I had a crystal ball. This past week I have started hearing a clicking noise in my knee and going down stairs has started to hurt. It basically is not painful except for that. I am so scared this one is going to go like the left one. The night the miniscus detached was so incredibly painful. The bone scan showed miniscus deterioration under the knee cap. I see the orthopedic surgeon July 2 and I will bring it up to him then. I don't want to go through another year like last year and then all the surgical pain like I had in 2023 combined with the cancer diagnosis. Do I dare even think about this.
Re: De Novo Stage IV
I recently completed my radiation treatment, and at the end, the team encouraged me to ring the bell. At first, I thought they had mistaken me for another patient. I quietly told the tech, "You know I am stage 4, right?" he responded, "we celebrate it for all our patients." I thought it was just ringing a bell, but when I took off the robe, I felt a flood of emotions. no matter how hard I (we) fight, those nasty cells are still there, making my heart squeeze and tears well up in my eyes. I don't know how long I stood there staring at the bell, they encouraging me, "you can do it." when I finally did, I looked back and saw the team's eyes were full of tears. I felt understood, seeing people who don't even know me recognize how hard I fought. of course, there was also the sadness of facing an uncertain future. these feelings stayed with me for a few days, and whenever I remember that…
during the treatment, the primary tumor and my breast started swelling, but the RO was confident to continue not leaving the treatment incomplete. unfortunately, the tumor is now 3 times larger than before the treatment. some se are around like elevated temperatures at the treatment site, occasional fever, and some fatigue. my MO admitted that the treatment didn't work in the way we expected, and now we have to wait six months before considering a biopsy or possible surgery. I disagreed with radiation but would they listen? capital n, capital o. the RO is hopeful the tumor might shrink. I am disappointed and angry but still hopeful that this treatment will show some positive outcomes.
I used Maiderm lotion during the radiation treatment and it has been very helpful. I highly recommend it.
I have CT and bone scans scheduled in a couple of weeks. it's unusual for my MO to be proactive about scans, makes me anxious about the results…
on a positive note I found a dentist who made me sure that the bone loss in my jaw is not related to the medication but from old fillings. at least that's a relief despite everything else.
Re: De Novo Stage IV
a lot going on since my last visit…
Denise, I'm sorry to hear about your recent reaction to Herceptin. If you’re feeling stable, perhaps taking a short break to allow your body to recover might be an option? I understand it’s difficult to change a medication that has been effective for a long time. Please keep us updated on how you’re doing.
Jobbibo, 2 surgeries at once, shows that your team really cares about you. best of luck. have you consider the possibility of plastic surgery during or after mastectomy?
Harrow, you are a gem! how thoughtful of you to search and find answers for Denny. I'm so glad that you got good result and you are satisfied with your MO's decision.
Olma, it's always good to see your posts. I hadn't heard about the new med, Fareston/ SERM before, i am on Elacestrant/ SERD. I will ask my MO if Fareston can be recommended for ESR1 mutation. it's good to have an MO who's willing to listen to patients.
Sondra, my HER2 status has also changed to HER2+1 now from my liver biopsy, though we don't know if the status of the primary tumor has changed. originally my her2 was negative. have you had a recent biopsy? I hope phesgo works for you.
KBL, I hope you are doing well and getting to spend more time with your grandson. how is Elacestrant working for you? My body has finally adjusted to it, so no more nausea for about 1/5 month, yay! I hope it continues to be effective….
hello to everyone, Mai, Saulius, tougholdcrow, irishlove. it's always good to stay connected and support each other through everything.