Faslodex + Pablociclib(Ibrance) treatment combination -
Comments
-
SP you are awesome too! Please hang out with us fas ladies and keep us posted. Many of us need to change combos at some time, so hoping your Afinator journey is a smooth one. Outside of a some lumps on my rear (both sides) fas has been easy for me. Ibrance - has resulted in hair loss, drippy eyes and fatigue. However I am doing ok, and planning a cruise to France with my sister in July. Tres bien!
0 -
Hi Kimberly, I live near Eau Claire now but grew up in NE Minneapolis. As the other gals said, this tx is different from those you have had previously. Hope it works as well for you as it has for me. You will get great information and support here, so glad you got over your social media shyness (which I totally understand) and posted. A big warm welcome to you!
0 -
Lalady, the cruise is a great plan. You get to enjoy the anticipation and the cruise itself.
0 -
Shetland, Are you done with your loading doses now? Hope you are not in quite as much pain afterwards.
0 -
Thanks for checking on me, jobur. Yes, I survived loading dose #3. I got a tip from another patient about which nurse to ask for, so it will be interesting to see if there is any difference in the length or severity of post-injection pain in the next week. The injections themselves were about the same, with stinging and aching.
I think I need to come up with a good meditation/breathing/guided imagery sort of plan for the injections, and after that I'm pretty sure I have learned and done everything I can for now. So now I am ready to simply live with it. I think of women here at BCO who put up with a lot more pain from cancer than I have had to deal with, and I know it is time to just accept it and carry on, grateful this drug is available to me. I am very glad that I only have to get the shots once a month now.
0 -
SP - the shots do get better. Warm them up and make the nurse go s l o w l y. That helps with the stinging. I will be getting round #16 shot on Monday. whee! And just paid for my summer cruise (cancellation insurance too). Needing to be mindful that things can happen, but I find when I take out trip insurance, I don't need it.
0 -
Yes, warm syringes and slow. And the nurse also said to let the alcohol dry before the poke, which helped the second one sting less.
What is your cruise route, lalady?
0 -
SP and Faith - I decided to pack in 2 cruises this summer to help finish the travel bucket list. I booked a one week cruise at the end of July to Paris/Normandy, plus I added on 3 days in Basel Switzerland. Going biz class on British Air with miles. Then I thought long and hard about my dream to see the Romanov Easter eggs and Faberge Museum in St. Petersburg, so I found a one week cruise via Stockholm returning from Copenhagen spending 2 days in St. Petersburg, and added that for the last week of June. I'm insured on both cruises and traveling with my sister. Very excited and happy to have some summer fun to look forward to!
(()) Claire
0 -
Claire, Russia was on my bucket list. I went the year after the mets diagnosis. St. Petersberg is unbelievably amazing. If you're on a cruise you won't be able to wander around the city by yourself. But you'll still love it.
The Hermitage was so-so, but the palaces, OMG.
Have a fabulous time.
0 -
Claire - you show us how to LIVE with cancer. Thank you!
>Z<
0 -
Claire, you really are an inspiration, not just one but two cruises! Hooray for you! You are proof that life does not end with a stage IV diagnosis.
Faith (in the future)
0 -
Sounds perfect, Claire.
0 -
spa day was good but times got mixed up so only got massage and facial but it was great. Tx for asking.
Really needed that. Hope you are all well. I start my combo this Tues. Ibrance week be delivered Tues. I hope it gets me back to bed.
0 -
Claire, you're setting the bar REALLY high!! Last fall (one year post-mets) I took a 3 week vacation with my 21 yo DD to Stockholm, Belgium, Rotterdam, Amsterdam and Bergen (Norway)- phenomenal! She hadn't seen any of it before, and was so blown away. She' s a bio major at UCSB, but since our fjord cruise, she has decided to take up eco-conservationist lifestyle and is volunteering in a lab studying the effects of water acidification on ocean critters. Life changing, these trips. We will be in Paris in June, Strassbourg and over to Munich. No miles, so I better find some cheap seats!
Kimberly, can we get an update?! How you doing? Kathy
0 -
Cure-ious - nothing better to expand your mind than travel to a distant land absorbing culture, food and some wine! I have attended Cannes film festival for many years, but opted out last year. Nevertheless, speaking decent French helps me navigate Paris (where they are a bit snotty at times) and Normandy where I intend to honor our W2 heroes including my father. (I had a really old dad). As to St Petersburg - I am over the moon at seeing the Romanov palaces, the new Faberge musuem with the eggs and any other Russian jewelry I can gaze upon. I was always intrigued with the killing of the last Tsar's family, and now we know what happened via DNA, happy they are laid to rest. Hope the weather holds out for both of us, always a possibility of rain. Driving to UCLA this morning for my fas shot - round #16! SP - how is your new routine going? Faith/Teri - glad you are heading to Italy!
(()) Claire with some gusto
0 -
Claire, Normandy too? Also the best. You can get oysters on the beach -- the british tourists eat them whilst drinking champagne. I don't like either so didn't do it but it looked like fun.
The battlefields and the cemetery are very humbling. See the worlds longest comic strip -- the Bayeux tapestry.
I'd love to go on your trip with you. . .
0 -
Claire, Me too! Hope you will share some photos of your trips. So great that you are well enough to do all of the things you have planned.
Shetland, I think you have the right attitude going forward. You've researched and know all the best practices, now just need to live with it. I look at it as being only a few minutes of pain every 4 weeks followed by a few sore days. Not much to put up with if we can go on living our lives the rest of the time. And many live well and continue on this tx for years. Hope you will too.
Cure-ious Kathy, Sounds like you are making some wonderful memories with your daughter. Bravo!
Pajim, Nice to see you still hanging around here. How is A/A treating you so far?
0 -
Good morning to all. This is my first post (I think, anyway...I don't think that I have written anything before!). I am in Virginia. I was diagnosed with breast cancer in 1991, with mastectomy and chemo and reconstruction. One positive lymph node. Tamoxifen for 15 years or so and then Evista for the remaining time. To my utter astonishment, I "accidentally" discovered mets in the bone (only there so far) in late February of this year (a CT scan of the chest for something else, followed by a bone biopsy, which confirmed the diagnosis). I was immediately put on a shot of Faslodex (loading dose...another shot in 2 weeks, and the third coming up on March 24th). I started Ibrance on March 2nd. I am a total newbie and assumed that breast cancer was behind me. I am 71 (birthday on March 3rd). I'm generally a very healthy, upbeat person and am trying to learn more as I know so little at this point. So far, I have had no side effects at all. I am trying to learn from this site and from all of you. I don't really understand how the site works yet. Can you set it up so that replies appear automatically in your email? How do I know if there are replies to my post?
Thanks for whatever guidance you all might provide. I look forward to getting to know you and to making this journey together.
Hugs to all....
0 -
JoynerL -
In this forum you don't respond to an individual, you just respond to the thread. There is a link at the top and the bottom of the thread where you can make a thread a favorite. When anyone posts to that thread you get a little notification icon in My Favorite Topics area (menu on left) so you know the conversation has advanced. I have ten or twelve threads marked as favorites. I log on periodically and monitor those conversations.
You have a great prognosis starting with limited bone mets and a you are on a great combo. We can use all the positive upbeat people we can find. Welcome.
>Z<
0 -
Welcome, JoynerL. What an unwelcome surprise with that CT. I suppose we can say the chance finding was a timely one. With such limited disease, perhaps this great drug combo will soon bring you to no evidence of active disease. I think your long success with Tam is a good sign, too.
Like Z, I mark threads as favorites in order to follow them and contribute comments. On your list of favorite topics, you have the option of having email notifications sent. You can find threads (topics) for breast cancer subtype, breast cancer stage, what therapy you are on, location of mets, age or interest groups, fun and entertainment, coping emotionally, insurance issues, etc. Let us know if you would like links. And if you use the search function and get too many hits, try scrolling to the bottom and click on "sort by relevancy". I just started Faslodex myself with a second drug to go with it, so I follow this Faslodex + Ibrance thread as well as the plain "Faslodex Girls" thread.
By the way, to make your "stats" at the bottom more understandable, you can enter both your original diagnosis and your mets diagnosis separately, with different years. Right now it looks like you have been stage iv since 1990, which you have explained is not the case.
0 -
Z and Shetland Pony-
Thanks so very much. I am old to breast cancer but a total neophyte to its return! Thanks for the guidance on this site and the tips. I will try to figure out how to modify my treatment, too. I noted that it was deceptive but had no idea how to correct it.
Thanks as well for the encouragement and the welcome..I look forward to getting to know all of you and to sharing in your wealth of knowledge. I know so very little right now, and you girls are reeling off abbreviations and medication names like pros....I'll catch up (sort of)...!
0 -
Joyner, welcome! You'll learn, never fear. The fact that you're here means you're interested. It can all be overwhelming at first; you'll get there.
Glad the treatment is treating you well. . .
0 -
Hi Pajim, SP, Z and Jobur - you are all welcome on my trip and you know I will take pics! Who wouldn't resist eating in Rouen where Julia Child started her foodie love affair at La Courronne? Plus walking around St Petersburg and going to Catherine's Palace.
I want to see this while I am well enough for the travel and fun. Shetland how are you doing on A/A? Joyner - I'm originally from VA, where do you live? Wonder why your onc didn't start with just fas over Ibrance+fas, but that is the combo I started on 16 rounds ago. Yesterday's shots went in fine, nothing to complain about. I am very sorry to report that my feline companion of 17 years, Mr Slim, was put down yesterday in my arms. Very sad, but we must share good and bad here. I had tonight's Ibrance with a glass of Pinot Noir to toast Mr Slim. Here is a pic of my sister and I at the Sundance Film Festival in January. Don't know why it's sideways. lol
(()) Claire
0 -
Great photo Claire! I am always telling people to keep moving, but in my mind you are in constant motion. How do you cover all that ground?
>Z<
0 -
So now I'm joining this group. Diagnosed with lung, bone and liver mets and stable on letrozole for 18 months. Now on faslodex and ibrance. Shots were really easy for me, worst part having to stand like a heron for a while, only my first dose of ibrance so probably won't know which if any side effects are which drug.
0 -
Oh my gosh it is amazing to me how much time one can lose to medical drama-rama. I feel like I missed so much in 10 days.
LivnAZ44 -- I am just starting on this combination too. Glad to hear that your spa day went well for you.
LaLady – Thank you so much for your kind welcome back on the 5th. My tumor marker test is the CA 27.29 test. I started at 425 when my mets were first discovered in August and am now at 785. My last PET confirmed that the TMs weren't off and that the cancer is progressing in my liver plus three new areas of bone mets. I started Faslodex on the 4th and Ibrance on the 10th. Next set of shots due tomorrow. And yes, I am starting with the 125mgs dosage. I don't live in Boston near Dana Farber – I just found an MO there that I really like and trust and is more focused on the ER positive PR negative HER2 negative profile. Also work with a MO here in Minneapolis. My son lives in Boston so it is a great excuse to go visit him quarterly. The lemonade out of lemons thing… I am really excited to hear you are planning two cruises. So inspirational! And where you have traveled is amazing. I totally agree about getting absorbed in a new culture and your photo from Sundance is so happy! Thanks for sharing it.
Shetland Pony – thank you also for your welcome. You wrote to me earlier in September when I was just trying to figure out the message boards and I truly appreciated your reaching out and support. I had posted a bit on the "cold capping to save our hair" site when I was first diagnosed in January of 2015 but didn't spend a lot of time online especially because I have been a bit social media shy. Fortunately you kind ladies are helping get over it! Now that I am not working full time I have more time to connect with others and to research. I am praying as you and others suggest that this treatment will be a good one for me. I try not to focus on tumor markers as my have been up and down like a roller coaster. Just staying focused on how I feel and staying as active as possible. Your MO sounds so positive and supportive. That is wonderful!
Hi Jobur -- I have been to Eau Claire many times! Thank you for reaching out.
Cure-ious – I survived the first round of Faslodex shots just fine however broke out in a rash and had difficulty breathing. Of course it was the weekend and necessitated a trip to the ER. After five hours and consult with attending MO they decided that it wasn't Faslodex related however no one was quite clear on what was going on. Serious drill defending the supplements I have been taking and the attending MO said a big fat NO to taking a lot of Vitamin C with the Ibrance. With all the changes since the bad news on the 1st of March, and the trip to the ER I just crashed and burned emotionally last week (plus had dentist, PT for lymphedema in my leg, acupuncture, blah, blah, blah) Weather sucks here so getting out to walk is a drag and without my four miles I find I just go to a dark place. My meeting this week with my MO was very positive so we are just watching neck pain that doesn't seem to want to go away. But no more rash or tough breathing which is great! My husband and I are planning a three week trip to Ireland and England in July.
Joyner L -- Welcome! Hugs to you too!
Hi Cive welcome to this group.
Zarovka, thank you for theguidance and direction. Really appreciate it.
Happily the snow is melting with the intense March sunshine. I am headed back to Florida on Sunday in order to play with two of my grand-daughters on the beach. The increased progression and new treatment plan wreck our birding trip scheduled for tomorrow through the end of the month but Florida is a nice consolation. There will be plenty of birds to find in April and I look forward to a couple of tulip festivals! Wish me luck with tomorrow's shot!!
Warm blessings to all,
Kimberly
0 -
Great photo, Claire! I can just feel the crunch of the snow underfoot. Looking forward to photos from your upcoming trips. Sister time is awesome. I am feeling fine on F/A (Faslodex and Afinitor). Thank you for asking. ( : Just injection site pain and a mouth sore from biting my lip, that is taking a long time to get better because of the Afinitor, I think. Faslodex Nurse #3 wins the prize for the smallest bruise and the fewest days of pain with walking. I will be requesting her again.
Kachincolor, I am not a fan of internet stuff either, but this support group is essential to me. Nice to see you! We are in the same boat, waiting to see the results of a new treatment. Not thinking about it all the time! "LA LA LA...." (Hands over ears.)
Hello, Cive. Which side effects from which drug? That's easy, they are all from Ibrance. (Joke -- but, well, at least for me no Fas SEs other than pain in the butt.)
Glad you are still on this thread, pajim.
Let us all raise a glass to Mr. Slim. He was a good friend and a Good Kitty. Hugs to you, LaLady.
0 -
Raising a glass of ginger tea to Mr. Slim. Cats are just awesome. Each one unique.
>Z<
0 -
LaLaLady- Totally infectious smiles!! This really is what it's all about, do all the travel or whatever else you most want to do now when you fell well, and then when it turns out that you just continue to remain stable and healthy, you can do a bunch more new things that weren't even on your bucket list!!
KatchinKimberly-it could be and probably was the supplements, but it seems so many people on these boards report some kind of odd reaction with the first exposure to new treatments, at least until the body has a chance to adapt, these are really powerful drugs- but wow, scary!
Can't keep up with this thread, y'all moving too fast for me!
0 -
Second post today --
The specialty pharmacy that distributes my Ibrance told me not to eat grapefruit with this medication. Yesterday, I got an update from Sloan Kettering's website about Pomegranates stating that Pomegranates can impact medications in a similar way asgrapefruit. Has anyone else been told to stay away from Pomegranates while on Ibrance?
Thanks all!
Kimberly
0
