Best Of
Re: Kisqali side effects and timing
@norah2024 Thank you for your reply. Vision seemed to improve but stomach cramps and extreme fatigue set it throughout the day. I’m hoping tomorrow is better.
Re: Mets to Pleura
I had breast cancer right chest in 2015. 7.5 years later I had pleural mets. One thing I learned is the more fluid they take out the easier a thoracentisis is. I have been one Ibrance and hormone blockers for 2.5 years and doing well. The one thing I have learned about cancer is there are no guarantees. I was told I was cured in 2020. Hang in there once you get started on treatment things will hopefully get better. Do not google pleural effusion. The information is out of date and you will get more upset.
Re: Bone Mets Thread
@mc22
I feel for you deeply, as I’m going through almost the same situation — the main difference is that my progression started about nine months ago.
Since I began my current treatment combination — Kisqali, Faslodex, and Xgeva — I also experienced a recurrence in two areas. From August of last year until now, I haven’t seen a major change in the uptake in those areas, but my tumor markers have been steadily rising.
This month, my CA 15-3 result was 130, a jump from 105 the previous month. And with some pain in the middle of my back, I had a feeling the disease was progressing. An MRI confirmed the appearance of a new lesion in one of the thoracic vertebrae.
My doctor’s plan is to go for radiotherapy for the T9 Vertebrae
And to continue with the current treatment until the genetic testing results come back. He told me that depending on the results, I have two possible paths:
- If the results are positive for any targetable mutation, I will be switched to a drug specifically designed for that gene.
- If the results are negative, we’ll proceed with a PET scan to check whether the spread is limited to certain areas in the bones or if it has reached other regions.
The proposed treatment if further spread is confirmed would be Enhertu.
While the oncologist suggested starting with radiation therapy followed by a pet ct scan,
the radiation specialist recommended doing the pet ct scan first, then deciding where to apply the radiation therapy.
I’m feeling uncertain between the two approaches.
I truly hope I won’t have to change my treatment — just the thought that my options may be running out causes me a lot of anxiety.
I hope this information is helpful to you, and I truly wish you fast healing and clarity ahead.
Re: Bone Mets Thread
@norah2024 I'm really sorry to hear about any kind of struggle with insurance or lack thereof. I wish I had some advice about that, but I'm sure others are in a similar situation and could offer some. I hope the results were insightful.
Mets to Pleura
in October 2018 when I was 34, I was diagnosed with stage I/II IDC ER/PR+ HER2- low oncotype and ki67 and so went through lumpectomy, radiation, tamoxifen for five years. It was a large tumor near my chest wall, but due to the pathology report + oncotype oncologist said my outcome would be very similar with / without chemo so we opted for no chemo.
In Nov/Dec 2024 I stopped tamoxifen and since it was my first year off my oncologist decided that I should have my annual mammogram in October but then have an MRI in April so I have some form of a scan in 6 months rather than after a year. Thankful for this MRI since it picked up fluid around my lung and so went for PET scan. Again PET scan showed pleura effusion on my right lung and slightly collapsed with mild SUV uptake. Till that point I had zero symptoms other than feeling unusually out of shape when working out / hiking. I got transferred to a pulmonologist to get a VATS pleura removal + biopsy (surgery just over a week ago) and the results are now out - pleura has similar characteristics as my original tumor putting me officially at stage IV. Can I also add the vats is bloody painful - didn’t expect that I feel like lumpectomy was easier!
I’m grateful for my oncologist who wanted me to keep checking although he told on paper it doesn’t make sense for me to have Mets given my original non-aggressive tumor. But the appearance of fluid bothers him and he wanted to make sure so he connected me with his pulmonologist friend.
But it still sucks. It’s also scary. I’m the minority that got Mets.. yes with Mets prognosis isn’t always bad, but given my luck with this recurrence I can’t help not think that I might not beat the odds. I cry just looking at my kids hoping that I can at least see them into early adulthood. I’m hoping after my appt tomorrow with the oncologist to determine the way forward I’ll feel better.
Not sure what the point of my post is. Maybe a bit of just putting it all out there. Anyway, if you know of any positive stories of cases like mine pls share.
raysal
Re: My Husband, My Life, My Love, My Family, My Cancer
Well, had a decent sleep last night and just getting a start to my day.
Robot vac doing its thing in the living room, cats have gone AWOL. Got some boxes to break down as well, there is a lot to take out on Thursday since I skipped last week.
Finishing up spinning laundry from yesterday, not too much today so if I wash, probably use a smaller one. I will see what I wish to do.
I have come to a food crisis in that found some food I do not like to eat like the kale and not sure about the spinach, not a big salad person. Need to eat more beans and rice type stuff. Eggs can be done in conjunction with a meat pie. Also feeling like having a burger and bun are a bit overwhelming too. I am probably going to throw a sprayed bowl with two eggs, grind up left over burger patty from Burger king and throw that in and have the bun with garlic as that was quite good. I think I will use more lentil along with the chipotle beans, beef up the amount.
Got a prescription delivery coming, just my tegretol. I am always amazed the pharmacy recognizes me and remembers the two prescriptions I get.
Once the deliveries happen, will get dressed and put on the heating gear to take a walk around the block. Supposed to be fairly warm but will put the evaporative head band cooler under my wig, got the neck fan and another evaporative towel going around my wrist. Bring water of course and the wide brim hat but would like to build up some heat tolerance as some of our temps will feel into the mid 90s. Oh well, almost officially summer and we are humid.Better hot than snowy. When it comes to appointments at the hospital, Paratransit all the way.
I do hope everyone has a good day, I am in pockets for all who need me. In my own pocket to actually do a walk around the block.
Re: ER-, PR-, Her2+ Roll call
@beekaycro24 sending u healing vibes and hugs. I'm hoping that u get to go home soon to rest .
@grammie2 very happy for u and your tears of joy! The port being smashed during mammo and coming out fine? Whoa!
@chocomousse please keep us posted about what treatment is offered given taxol allergy.
snm
Re: Herceptin only ... no chemo ... Medicare won't cover it!
Thank you. We’ve already started that process with Genentech. I’m discussing this as an age discrimination issue and I’m using one of your research papers as justification for a herceptin only treatment protocol.
ptsintx
Re: HER2 Positive-anyone 10 years out?
@hopefaith1 Hope that you are doing okay. I do use google for explanations for a ton of terms and possible solutions. I am not one to believe in snake-oil treatments and take all with a grain of salt.
I am also on a lot of online support groups and do learn a lot there.
I am at 23+ years of MBC de novo.
denny123
Re: Ibrance (Palbociclib)
@sully01 , Please don't worry about dropping to a lower dose of ibrance. You'll be OK. I started with 125mg, and stayed on it for 1 ½ years before moving on to 100mg for 3 years. I've just dropped to 75mg last month. It's been rough when my Neutrophils dropped but I try yo keep on top of things in order to avoid potential crises by closely monitoring any signs of mouth/throat/chest or stomach infections because that's where my signals of an impending infection start. I wish you and everyone else in this chat, a smooth ibrance experience
I have to add that being in this group has been my lifesaver because it's where I heard of alternative dosing schedules like 5days on/2days off; and 2weeks off/2 weeks on. That helped me last longer on the 100mg because I told my Oncologist I was reluctant to change to another CDK4/6 if Ibrance was working. My special heartfelt thanks to all the the women here whom I've asked countless questions, whose experience has guided me and from whom I've picked so much information.
Love, hugs and blessings to all because you are the best 🙏🏻❤️🫂
