Ibrance 100 mg. Letrozole seemed to decrease 7 areas of Mets.
MRI to pelvic, lumber shows progression of Lumbar L1 ,and lesions right pelvic bone. Nov 2023.
SUV increase 5.6 to 5.9?
Now Onc suggesting to capivasertib+fulvestrant but don't know yet if it's in addtion to or replacing Ibrance, Letrozole.
Last week off Ibrance for 6 days and decided Not to take Letrozole and felt sooo much better.
Question: take all 4 or just try capivasertib, fulvestrant
Your onc is suggesting switching treatment because of progression. Your progression doesn't seem that clear, and the SUV is not that high, but it is not out of the question to change to something else. I went on a different CDK4/6 inhibitor and a different aromatase inhibitor each time I had progression until I ran out of options. Some countries do not allow that -- just switching to another CDK4/6 inhibitor.
Fulvestrant is more effective than letrozole in decreasing estrogen, so that seems like a good switch. Cape (Xeloda) is an oral chemo. I am going to go on it now. My oncologist said she has patients who got a couple of years out of it, and the side effects are not so bad. (I found letrozole intolerable - the joint aches were extreme. I did not have much in the way of side effects from fulvestrant.)
You need to clear this up with oncologist: why is doc suggesting stopping Ibrance and letrozole? Why these two treatments next? What are the alternatives?
Choice of treatment is also based on the genetics of your cancer. Are you ER+ HER2-? The thing about Xeloda is that it doesn't care what type you have. Fulvestrant does, as it decreases estrogen and most breast cancer feeds on estrogen, and is discouraged if there is no estrogen.
hi Tammy- good luck on xeloda I am sad to be about to leave it to start IV chemo… but my markers are rising and my symptoms tell me it is time. But I enjoyed the year and half I got and wished for more. I did find the HFS hard to deal with but wasted a year in too big shoes to manage it. Finally settled in my hiking boots with hiking socks and did fine on days I had to go all day thru airports etc. I wore sickles compression sleeves and that helped too. Standing is worse for you than walking… so I really suffered on days when I stood cooking as I am very slow. I couldn’t walk as far as I liked but I stayed fit by swimming 400 yards( just 16 laps) and evoking whenever I could. I hope that is helpful.
oh-oh. I have to dance. I used to love to swim more. Maybe I have to switch back, but have trouble finding good places to swim around NYC. I used to swim 20 laps, but forget the pool size.
I saw that some people used Voltaren, but I checked and it is not to be used with cape. People here say they wore gloves and socks over moisturizer to sleep, but what kind of gloves? Plastic/rubber? winter gloves? and just regular socks? I really cannot go through that. I also have vacations coming up where I have to hike to the beach, on sand, and garden.
I am going to write the one nice outdoor private membership pool in the woods that got me through one summer. Then last year they decided to restrict membership to people in the neighborhood. I tried to get grandmothered in, but they didn't open at all last year.
Tammy- they do recommend voltaren cream now BUT the studies were done on people who didn’t have HFS. I don’t dare try it on my feet which were red from HFS since it smelled of alcohol- one of the ingredients. I just used urea cream. I ended up just creaming my feet at night as slathering them in the morning led to slippery feet and blisters. My hands never got HFS… hope yours don’t either.
Re your rather magical sounding pool, I would pull out the MBC card if they are heartless about asking to be grandfathered in. Also know that my oncologist manager her mother in law on xeloda for 8years… so you do have to find the right dose… which is kind of the balance between efficacy and the suffering you can manage with your feet. I made the mistake to get much bigger shoes as at first I couldn’t tolerate even loose socks.. in the end hiking boots worked the best for me… just made it here from Boston to DC thru both air terminals… boots were key!
Thanks. I have already used the cancer card re: the pool but I will again. I reassured them that I won't be using the pool for long.
I thought I read studies on Voltaren, and the active ingredient tested on people with HFS, but mostly it is used for arthritis, deeper pain. The problem, as I recall, is effects on the heart, and cape (Xeloda) was specifically listed as having an interaction and proscribed.
I don't think I can dance in hiking boots! I don't even own any any more.
I already bought lotion with 10% urea. It is drippy. My hands are already bright red, half red/half white. A dermatologist said it was HFS, even though I have not yet been on anything that is said to cause HFS. So I bought the cream. Hasn't helped, but my hands aren't so dry they would crack.
BB- I got in the pool! Start Xeloda week after next. Apprehensive about HFS -- have two dance performances in June. Getting ready to address HFS.
Hi guys, important correction: The original post said the oncologist is recommending Capivasertib (which is the new drug called TRUQAP), rather than Capecitabine, which is Xeloda. She is not going on Xeloda so hand/foot syndrome should not be an issue.
Capivasertib is a targeted therapy for HR+ and is a new drug (brand name Truqap). It doesn’t seem likely that you’d take that along with Ibrance — I think it would be a second line therapy— but that’s something you need to clarify with your onco.
I wish I could help you advice wise but right now I feel so bad for taking letrozole and Ibrance it makes me so tired but if the doctor thinks you should take it then you probably should, God bless you and I pray your cancer goes into remission
It seems like the capivasertib + fulvestrant would REPLACE the Ibrance + letrozole. I have been on fulvestrant for more than 5 years (along with a CDK4/6i) and i much preferred it to an aromatase inhibitor (I took anastrozole then exemestane), if that helps. Good luck!!
I doubt it would be your course of treatment to take all 4, just wait and see what the oncologist recommends,
Capivasertib (TRUQAP)
Questions on treatment options
Coming off Ibrance and fulvestrant. Not feeling great. 
Started on piqray & fulvestrant yesterday
