Best Of
Re: How long have you been Stage IV?
Hi everyone! Just dropping in a note to say hi! Living my best life as much as possible! I feel really fine and am taking advantage of it with the great summer weather. Just so happy to have the ability to get up, go - so I do!
The summer flew by (it’s almost Labor Day!?!) but I’m keeping fingers crossed for a long lovely fall, my favorite season. Perfect temperature to spend days outside, with a jacket or not 😎
@livinglifenow Hi Pam, Ms. Director, how is your play coming along? I hope you are enjoying your time with it! Happy you are feeling better on the new drug.
@ssales13 Hi Stacey! Kisqali worked really well on my bone lesions too! I have too many lesions to list out but some have actually been resolved. Focus on the good stuff is one of my mottos - I seem to be creating new mottos all the time since this diagnosis 😂
I think a number of us have scans coming up in Oct. Sending out a community wide wish for great results ♥️🍀
Enjoy the end of summer everyone 🌺. Till then for now! xo juliana
eddiej
Re: Struggling
Hi @brandie1, I’m so sorry that you find yourself in such a difficult situation. I don’t have any solutions but my ILD pulmonologist told me there is a connection between scarring diseases like scleroderma and cancer. Both involve transforming growth factor beta 1. In both diseases the tgfb1 is unregulated so what starts as a normal healing process does not stop when it should. Unregulated scarring can affect not only the skin but other organs like the lungs, heart and kidneys which eventually stop working. The unchecked cell division can cause many types of cancer, too., so anyone with a sclerotic disease is much more likely to be diagnosed with cancer. Unfortunately the usual cancer treatments don’t work the way they do in most people and can actually be harmful.
There is promising research being done on tgfb1 but useful applications are years out. I don’t know where you are being treated but getting a second opinion from an interdisciplinary team at large academic hospital might be helpful. Hugs for you.
maggie15
Re: Can we have a forum for "older" people with bc?
betrayal, the sewing was immediately post-cortisone. i regretted working on a jigsaw puzzle yesterday. Transportation failure again last Monday. They called me yesterday and I have yet another appt scheduled on the fourth. Remember this guy is also my plastic surgeon and gave me a cortisone injection during my implant exchange back last spring.
Making hummus right now.
mcbaker
Re: Can we have a forum for "older" people with bc?
Cindy - the castle gardens are beautiful. I could happily meander through there for hours. I am really impressed with all the walking you are doing so soon after surgery.
Betrayal - it must be frustrating to have reached out on a volunteer opportunity and not heard back. I do think that is something many non-profits need to improve upon. They claim to need volunteers but do a lousy job of recruiting.
Petite - your cabin is a perfect size. Happy to hear you’ve met some neighbors.
Nothing new here although our weather has cooled off a bit after the weekend storms.
harley07
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Hi Jellytot83 - It appears that there are far fewer people on Kisqali (ribociclib) than Ibrance (palbociblib), at least as far as the postings on this site. Ibrance was FDA approved earlier than Kisqali and as a result received the lion's share of the market, so to speak. Ibrance/Letrozole failed me after about a year so I am now on a clinical trial with Kisqali and a new oral SERD with no name yet, just known as LSZ102. So I too have been in search of others to share their experiences with Kisqali. The hard part is that the CDK inhibitors like Ibrance and Kisqali need a companion anti-hormonal to work and that companion drug is a variable (letrozole, faslodex, arimidex etc) making it hard to compare apples to apples. As far as my experience goes, so far I'm feeling very good on my protocol. Most, if not all of the side effects I experienced on Ibrance/Letrozole are now gone. If this protocol keeps me progression free I will be very pleased - not only because it is working but because it is allowing me a very good quality of life. I hope the others on the trial with me are feeling as good as I am and are not seeing progression either. Being in trial is a little lonely. You don't have interaction with the others in the trial and you don' t know how they are doing. I'm in my third month of the trial and will have another set of scans on Sept. 5. I'll let you guys know how it goes.
Re: Stage IV MBC Fitness
I just had my vitamin D checked and it’s normal. I’m not very consistent with the sunscreen. My D levels have been normal every time it’s been tested even in this cloudy climate.
Went to Enhance Fitness today. Man, I sweat a lot! It’s not even hot in there and the exercises aren’t too strenuous! Due to the drugs I imagine. Every time I think “stupid drugs “ I try to turn it around and think “no smart drugs! “ I wouldn’t be here without them.
aj
Re: Can we have a forum for "older" people with bc?
We need to give each other the space to grow, to be ourselves, to exercise our diversity. We need to give each other space so that we may both give and receive such beautiful things as ideas, openness, dignity, joy, healing, and inclusion.
betrayal
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Hi S3K5 - I just started Kisqali (aka ribociclib) but not with letrozole. Ibrance (aka palbociclib) and letrozole failed me. I'm in a clinical trial with a new SERD that has no name yet. It's called LSZ102 and I take it with Kisqali. I started a topic for the clinical trial I'm on. I'll be following this thread closely. Thanks for starting it up. I'm sure a lot of others on the boards will be watching...
Good luck!
Re: How long have you been Stage IV?
Hi everyone! Hope you all are having a good day. @livinglifenow Pam, Just wanted to update you. I saw Mo today. She said no changes for now but on October 31st I have another PET scheduled and then see her on 11/4. She said if that one showed more activity in my breast that she would either have me meet up with Radiologist or surgeon. She said Kisqali is working good on my bone lesions and that they are healing. Glad that’s out of the way. Hope you all have a good week and weekend!
ssales13
Re: How long have you been Stage IV?
@ssales13 Stacy, thanks for the update. Glad that the Kisqali is working on your bones!! I will pray that your next PET shows improvement. My next PET is in October as well.
We do a lot of living day to day, week to week, and month to month. Hope you are feeling healthy and have good energy. I am feeling much better since I switched from Anastrozole to Exemestane. It took about 3 weeks for the Anastrozole to clear my system, I think.
Have a wonderful week and enjoy every minute!
Hugs, Pam 💗
