Best Of
Re: Enhertu Plus Perjeta: New First-Line Treatment for Metastatic HER2-Positive Breast Cancer?
So happy this will be replacing THP. My onc. just switched me to this as I had a bad reaction to Taxol during my 2nd infusion. I start in 2 weeks.
To have access to a superior treatment that doesn't involve chemo is huge.
Stage IV mBC to lungs and adrenal gland. HR negative, HER2 positive, Grade 3.
Re: Life does not end with a stage IV diagnosis (really!)
Thanks to Chicagoan for reopening this thread. I'm interested in positive stories about our stage 4, it makes me feel good to read you.
I've been in stage 4 since January 2023 and I also know that my life expectancy may be a little shortened and deprive me of certain projects I had for my old age... but I bless every day when I feel good, with energy and then I launch into what I like to do on a daily basis. These little hobbies enrich me enormously: going for walks with my husband, cooking a new recipe, starting up the little vegetable garden and trying out new plantations, observing nature....I find that I have a much richer life than before my diagnosis. Of course there are ups and downs, and in the more difficult moments I adapt my pace of life. I'm lucky to be well surrounded by my husband and my care team, and I appreciate every moment of sharing. These last 2 years have been a beautiful journey, and thanks to the forum I'm moving forward with greater serenity.
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Re: My Husband, My Life, My Love, My Family, My Cancer
Hi all. Been a bit busy some days and paying the price other days. Sorry I missed you all and the happenings.
It will be 3 months to get our windows, even though we paid for them upfront. booooo. Hurricane seasons is upon us and now we have to worry about at least two bad windows. We did go with Andersen, as Consumer Reports rated them the highest. Not that we will be around in 30 years, but nice to pass on to next homeowner and peace of mind in the meantime.
Planning on Son in law to paint and pressure treat the house this summer. He's had a virus for 4 days. My money is on something he picked up at Disney. DD and DGD staying here while he isolates. We sent soup and salmon and chicken to him.
Pet scan June 26th. I feel it's been too long. The referral to Gen Surgeon is still a cluster mess. One hand does not know what the other is doing. It's been months, so I started to advocate heavily for myself. Anyone else read or interested in the non-opioid pain med Jourvernex (sp?). New to market, not sure of insurance coverage and efficacy. But interested in the product so that I can return to low dose naltroxone. That was off label for MS and worked brilliantly but can not be used with opioids.
Mara, I did a random dish of salmon and incorporated black beans, yams, pineapple chunks and wrapped the salmon in havareti cheese. Poured some yam juice and pineapple juice over the dish before baking it. It was so good and healthy and thought of you…
I tried to duck out on faslodex shots, but the nurse reminded me they want it timed with the Ibrance, so I lost the argument. I can't wait for oral SERD to be approved by all insurances. The nurse did say there could be a drawback to the drug and that is side effects of GI issues.
Very weary. The therapist picked my spirits up a bit but as you all know living with ongoing pain and the unknown is overwhelming. Think I'll try superglue into the fractured vertebra and see if that fixes what ailes me. lol
I'm in pockets for all the sweet people here, my second family. If I didn't mention your name it was not based on anything other than "My brain, she are no good". Or as my 11 granddaughter said when I asked her Papa's age, "Too old to explain" should be written on a T-shirt for him (he'll be 79 soon). LOL
Laurel
Re: Life does not end with a stage IV diagnosis (really!)
Good idea, chicagoan. I agree i found hope here when i came back dx with stage 4.. That was 8 years ago.
Im not in the garden this spring. A second bc dx and i had chemo and mastectomy. "Cured" of that" for now. But then hit with shingles that wont quit! Love to be outside. Few Cultivated perennials left in my garden in favor of native wildflowers. i live in an area rich with wildlife. My happy place is the woodland across the street.
gailmary
Re: Bone Mets Thread
@tougholdcrow
I truly thank you for your compassion and your advice.
It brings me great comfort to feel that someone is sharing my struggle with this illness and my difficult journey through it.
Re: Bone Mets Thread
@jen1
Thank you! I truly hope that what I write is helpful to others, just as what I read here is helpful to me in return.
I also always enjoy hearing others’ stories and learning how treatment is going for people who are going through the same condition as mine — it gives me a great deal of encouragement.😍
For me as well, my body has handled Kisqali quite well, and I haven’t experienced major side effects, except for stomach pain, which I manage with a PPI.
But what wears me down emotionally is that, despite the tumor being small and the spread being limited, it’s stubborn and doesn’t respond easily. Even with targeted therapy and radiation treatment, the tumor remains almost the same size, and the tumor markers keep rising.
Re: Bone Mets Thread
Hello everyone, I just wanted to hop on and give you all a quick update. I am on Prolia now instead of Zometa. Verzenio has been reduced to 100 mg twice a day.. We went back up to 150mg twice a day but started having again lung inflammation. Still on flasodex. Just completed rads to pelvis for pain. Tumor markers dropped after rads but are creeping up again. After my next scan in June I think my oncologist is going to switch me to Xeloda. Other than the lung inflamation on the higher dose of Verzenio I have done ok. I have not experienced the extreme runs that many on the Verzenio have had. I am hoping I can stay on Verzenio a little longer. Nervous about this upcoming scan because I am having pain in my rib area.
jen1
Re: My Husband, My Life, My Love, My Family, My Cancer
Mara - I appreciate your comment and am of a similar mindset, actually. They were the ones who originally talked about maybe having to postpone this appointment, but it was because it was possible that I'd be contagious. I'm not feeling so great today at all. Just made a quick drive to nearby store and afterward am feeling kind of lightheaded and worse than I was. Unless I feel even worse tomorrow, I will go ahead and go though, because I kind of want to tell them in person just how bad I feel, and maybe they will get it then and at least not do the shot. I felt similar to this on Monday too, but then felt a lot better yesterday. Woke up this morning a mess again. From what I read about shingles this could all go on for another week, but we shall see.
Intolight - We still have nights here that can get down to 46, but nothing like that during the day anymore. I totally understand you not wanting to get side effects before your son comes. I too think about getting the vaccine after all this clears up, but I've read that the shot can wipe you out for a good couple of days and that makes me think twice too. I also understand it's good for about 5 years, but not longer. I hope you can continue the PT. I was wondering how that was going, because you are the first and only person I've heard of who was doing cancer specific PT, and that was something new. Well I hope things go well with your new PCP, and that you have a wonderful visit with your son and family!
Re: My Husband, My Life, My Love, My Family, My Cancer
Mara, we are still in the mixed Spring/monsoon season here in the Rockies. It is only 46° right now. Woke to heavy fog, but it is lifting finally and will storm this afternoon. It is slowly warming though and will be in the 80s when my son's family get here in two weeks—yay! I would love to get out but will settle for going to PT tomorrow. Therapy does help me although I don't know how much longer I can get it fully paid through Medicare. I need to do more at home to prepare. My last appointment is in July. My progress is based on stamina and balance. I do find I can do a little more around the house now for longer periods of time.
I am thinking of everyone as you post, especially Threetree as you navigate through your shingles. I still haven't gone for my vaccine yet, but I finally see my new PCP next week and I am hoping to get it then. I could go to the pharmacy for it anytime, but I am procrastinating a bit… I don't want side effects before my son gets here.
Re: My Husband, My Life, My Love, My Family, My Cancer
I can't sleep so I'm spamming with flowers from my garden.
mkestrel