Best Of
Re: Faslodex Girls Thread
@Rosebessie mine have not been refrigerated for about 9 months. I am told they no longer requirer any refrigeration. They used tk take them out several hours a head of time. I am also done in a few minutes. I have always been told to avoid ice unless severe brusing because it can cause bumps. Heat and activity only. Hope things get better. I stand for mine one knee on a chair depending on the side.
Re: Can we have a forum for "older" people with bc?
Tippy suffered during my BC. I understand completely.
mcbaker
lymph node removal
I am 79 years old and have lobullar ILC breast cancer, stage 1 in both breasts. They are doing a lympectomy in a couple of weeks and also removing lymph nodes that are not cancerous, just for safety sake. Also have to do radiation for 3-6 weeks.
How is the recovery for this type of surgeries? And the likely hood it will not come back
Re: How are people with liver mets doing?
@ailurophile Thanks for posting, I'm a year ahead of you and it gets very unclear this far out what to do, so its great you are at UCLA and have access to trials. So, although you say you are endocrine resistant, you just got almost a year on just Orserdu monotherapy, which indicates endocrine-sensitive still, so can you comment more on the biomarkers?
I just finished a trial at MDA for PIK3CA mutation, and was allowed to stay on Orserdu for that trial because the cancer has both ESR1 and PIK3CA mutations. Despite liver mets, the cancer responded for 16 mos, and because only a couple liver mets progressed local therapy is also on my short list. I was interested that the main recommendation from the MO was to stay on ET, and so I'm trying Orserdu +Verzenio, which many would consider unlikely to work, but its been 2 years since I was on it, and I responded well to it previously. But if not effective, the suggestion was try KAT6 trial or CDK2 or any other ET combo. If I can get something to work and stay off of a PIK3CA drugs for a year or so, then maybe I can cycle back to take one of the drugs in the future. Anyway, when I took Verzenio before, it was with Faslodex, and the liver mets had not seen that combo, so perhaps that will work esp if I can treat the liver mets that are responsible for the progression. You did so well on Verzenio, and its been 2 years just like me, so you might consider going back on that, either with Orserdu or better still with one of the new SERDs like Imlunestrant, which are all supposedly stronger than Orserdu. Importantly, Verzenio can also strongly reinforce endocrine sensitivity, so might keep the cancer from mutating to a more aggressive pathway(s.)
It would help if you listed the main mutations from genomic testing or liver biopsy.
One thing that could also be a game-changer is go for additional newer testing for biomarkers, for example Darwin Onco Target is one of the newer mRNA tests, these tests they look at a large number of genes to see if there is very high (or low) expression, which can also be driving the cancer (its not just gene mutations, that do this!) and can give a much clearer picture of what is causing the current cancer growth. It can reveal new biomarker information and suggestion the best direction for treatment. For example, one of the most common pathways that get activated is the PIK3CA/AKT/mTOR pathway, which can be turned on by a PIK3CA mutation but there are many other ways to turn on that pathway, including over-expressing the proteins rather than mutating them. Regardless of whether the test identifies this or a different pathway that has now been turned on, it will validate the kinds of therapies you might want to look at.
Also, as is discussed in posts above, histotripsy and other targeted therapies in the liver are important add-ons to our therapy, and can be used repeatedly to clear out or reduce the size problematic liver mets. Tumors smaller than 3cm can be destroyed completely with histotripsy, and larger ones can be partially ablated or hit multiple times. But also histotripsy can give rise to a personalized cancer vaccine because it does not destroy the werido neoantigens the way other treatments can, so it can be done in combination with immunotherapy or chemotherapy to try to turn "cold" tumors "hot" and cause shrinkage of other liver mets that were not treated.. You might even consult Dr Kevin Burns (Mission Viejo Providence) about adding histotripsy to the paclitaxel you are taking right now, just as Maaki did in the above discussion; you could do this during a week off and it would not affect your treatment schedule. Apparently these guys are very fast in scheduling and its a one-day non-invasive procedure with minimal side effects.
It could be good to get off the paclitaxel before a major progression, for example if you took histotripsy and it helped the response, just to try to get back into the endocrine therapy loop before the cancer mutates in any more aggressive way. I posted a paper of a woman w/ten liver mets who had two histotripsy sessions of five tumors, and it cleared everything out in scans, even tho she was on chemo, not immunotherapy. Not every tumor is accessible, but they can be partially ablated, so 3cm is NOT an upper limit, and it can be repeated or combined with Y90 if need be. For purposes of immunotherapy, you don't care if they get all of the tumor, just opening up a met can allow your immune system can learn what neoantigen proteins are markers of your cancer that they should be hunting. So, the idea is to "use the tumor" (to make a personalized vaccine of sorts) before you "lose the tumor". Anyway, these are some ideas for your discussion w/MO…
Re: Can we have a forum for "older" people with bc?
Found this post by the Princess of Wales after she completed the 3 Peaks Challenge in England, Scotland and Wales. I thought it had a message important to all of us:
Every year, hundreds of thousands of people in this country hear the words no one wants to hear. What follows is a path that tests every part of who we are: physically, emotionally, psychologically and spiritually. The challenges ripple outwards, touching families, friendships, work and the quiet moments we spend alone with our thoughts.
Cancer doesn’t just affect the body. It changes how you think and feel and profoundly affects every aspect of life. I know this personally, and that the journey through and beyond treatment requires more than medicine alone.
I have taken on the National Three Peaks Challenge, not simply as a physical endeavour but as a chance to explore life beyond diagnosis and to give something back. The Royal Marsden is a place that holds great meaning for me and whose care and expertise are life changing for so many people.
Through this challenge, I want to raise awareness for the deeper impact of serious illness and the importance of holistic healthcare. Every individual is different, and ensuring there is a whole person approach to care enables those living through cancer to manage the deeply personal challenge of diagnosis. Holistic therapies complement clinical pathways and support patients’ ability to maintain their wellbeing, resilience and quality of life during an exceptionally difficult time.
We have an opportunity to reshape what the future of holistic cancer care looks like, enabling more people, nationwide, to access the kind of personalised support that can help make a meaningful difference during and after medical treatment.
This challenge will support the Royal Marsden Cancer Charity, helping to transform access to, and understanding of, holistic care that will enhance recovery and healing for patients across the UK.
Healing, whether personal or collective, is not just about fixing what is wrong. It is about finding balance in how we live. Between effort and acceptance, between control and trust, between thinking and simply being. Because in the end, bravery isn’t just about pushing forward. It is about knowing how to stay grounded, connected and present, no matter the terrain or landscape you are walking.
C
betrayal
Re: How long have you been Stage IV?
@bighubs my oncologist told me the same. My first NED scan was October 2024, and he said 3 years of NED and we can discuss discontinuing the targeted treatment, and hormonal treatment after 5 years of NED (I removed my ovaries already but still taking Faslodex). I’m keeping my fingers crossed and looking forward to this conversation, but it is an unusual approach as generally stage 4 are medicated for life. I wish your wife long long life of NED.
Re: Partners support, aloofness and anger
I am so sorry you are dealing with a husband that is not only unsupportive but also has severe anger management issues as well particularly at a time when you are trying to recover from a very major surgery. Has his behavior gotten worse since you were diagnosed and/or escalated after your surgery? Is there any chance he will agree to have anger management therapy and also go to marriage counseling with you? Perhaps he needs to be prescribed anti-depressants or a mood stabilizer to manage his condition? Do you have any supportive family members (including close friends as well as relatives) in the area that can lend support? I strongly encourage you not to make any changes to your financials/assets given the instability of your relationship with your husband, as I am sure you know, it is so important to protect yourself physically, mentally, financially at all times but especially now that you are more vulnerable. Sending gentle hugs to you. - Abigail
abigailj
Re: recently diagnosed-looking for info on nerve-preserving (or sensation-preserving) mastectomy
I'd had a nipple-sparing, sensation-sparing SMX back in 2021, when the sensation-sparing mastectomies were really new and mostly being done just by the Drs. Peled (San Francisco), and only a handful of other surgeons. The goal is to either avoid severe damage to the nerves during the mastectomy process, or to use nerve-grafts if the nerves DO get cut. I'd had my SMX done at Stanford, and luckily my insurance provider at that time covered my mastectomy, but in my case I didn't need nerve-grafting done, as my surgeons were able to avoid severing my nerves.
For the first few months post-SMX, I was mostly numb, but over the next 2 years I did notice gradual, but inconsistent gains in sensation. Now, at almost 5 years out, my SMX breast has irregular feeling. There are spots that are numb, like how it feels when my foot falls asleep, interspersed with spots that are almost normal sensation. Most days my nipple area is numb, but there HAVE BEEN days it is surprisingly sensitive, so for that I'm grateful.
I do have a friend who had her bilateral mastectomy done with nerve-grafting done on her cancer-side, and she did eventually get nearly full sensation back.
The resensation website is helpful in finding surgeons who do these nerve-sparing or nerve-grafting mastectomies: www.resensation.com
ammie
Re: Bone Mets Thread
@tallnterrific I am a very stubborn old lady, so I just keep going with pilates and lots of walking. I have increased my walking lately—just short rounds several times a day— and have found that it helps with both joint pain and sleep. I see a manual acupuncturist once a month and she has given me some exercises to keep things loose. Pilates keeps my muscles strong and provides some relief for the joints. I know from my CT scans that I have arthritis everywhere so I'm trying to keep ahead of the game. I think I may have already said this, but the side effects have gotten a lot better now that I'm two years in. and the drugs are keeping me alive and I always think that's better than the alternative.
