Ibrance (Palbociclib)
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- Help with pw
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Now it worked
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Well anyway ty Tanya and all who tried to help with antidepressents
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Sunnidays - I read stats from a Portuguese study of Ibrance plus fulvestrant between May 31, 2017 and March 31, 2019. It included 201 women. I had hoped for better results. But this is not the US either. https://www.practiceupdate.com/content/real-world-effectiveness-of-palbociclib-plus-fulvestrant-in-advanced-breast-cancer/132594
This was an article published in 2019. Id like to see a table of updated OS stats now that it’s 2022. Maybe someone else can find something. https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.e12541
Pfizer has published some stats but the study only goes 48 months so far. In the real-world setting, median OS was not reached in the IBRANCE + letrozole group.https://ibrance.pfizerpro.com/real-world-evidence/real-world-effectiveness/overall-survival#tab They must have stats for Ibrance plus Fulvestrant but I couldn’t find them. And I’m tired so I’m going to sleep now.
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Did anybody see my post deleted or other wise?
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lakewomam - I see 3 deleted posts. And a post to Tanya.
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I really hope the forums are back up and running, I have missed you all! Going to see if this will post...
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sf-cakes, I see it. Just letting you know.
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YES! BCO is back. Still in need of a few tweaks to get back to where it was before the “upgrade” but it’s back.
I hope everyone is doing well. I’m just taking things one day at a time. I’ve got some worsening pain in my *ss (doctors call it my sacrum) but my tumor marker ticked down last month so I’m remaining hopeful. Since my Jan scan showed progression to so many bones as well as my liver, I’m keeping my fingers crossed that xeloda is impacting ALL my lesions. My MO is on spring break with her kids so I’ll only have blood taken next week. I won’t actually see my MO until April 21. Im sure she will order my PET at that time.
Please chime in. After the BCO downtime, I think we need to have a dancer’s role call. Hugs.
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Hello, friends,
I'm happy to see the board up and sort of running. I've missed all of you and hope life is treating you well.
Here's a little catch-up for me as I'm not sure what's happened since we last spoke.
I had Y90/Part 1 treatment on my liver before Christmas and Part 2 in January. It was pretty successful with 3 tumors completely resolved and one diminished to one-third of its former self. My new oncologist now orders tumor markers and they were remarkably reduced after this. Y90 was not a piece of cake but I'm glad I went through it.
The bone mets played their usual tricks on the last scan.....some new ones, some that grew and some that diminished. (Not bad since I was off chemo for a couple of months.) My sacrum and left side of the back remain uncomfortable but still not having to take pain meds for which I'm thankful. Hope to have some more radiation for that in the near future. We'll see.
I tried the newest drug that's similar to Lynparza, Talzenna for one and a half cycles. My doctor has many patients doing well on this.....Let's just say I was sick as a dog and stopped taking it. I decided that even if it was the cure it just wasn't worth the misery!
So now I'm on the second cycle of Xeloda's lowest dose. The first cycle was all about nausea, vomiting and no appetite and, of course, constipation from the Zofran and Phenergen. This new cycle seems to be better so I'm hoping that continues. I've found that getting a full bag of IV fluids weekly helps.
The extra good news which I hope is an encouragement to some of you is that I just hit the 28-years-past-BC-diagnosis and the 10 year mark past MBC diagnosis anniversaries!! I thank God I'm still here and am thankful for all the brave people who participated in trials for the drugs that have helped me. A new biopsy has shown that this cancer is now just barely ER+ and has become what my oncologist refers to as HER2-Low. He worked on the trials for Enhertu (sp?) in this setting and says the drug should be approved for it in June. The current plan is for me to join that dance unless Xeloda does something remarkable in the meantime. Woohoo!
My longwinded self wishes you well and I continue to pray for all of you. If you're still doing the Ibrance dance or if you're new to it, I'm thankful to have had 5 years on it. God bless all of you.
Love from PatGMcWordy
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Hi All - SO HAPPY TO BE HERE AND SEE SOME POSTS! Sorry for shouting, I was locked out for at least a week - I am sure you were all, too. I realize how important you all and this stage IV message board is to me.
PatMcG - wow, thanks for posting, 10 years with MBC is hopeful to all of us! Wonderful to hear from you and also I am happy to hear that the Y90 worked well. Sorry to hear you were so sick on Talzenna and hope that Xeloda works well and is easier to tolerate!
RK 2020 - sorry for the pain in the *ss but it's great to hear your tumor markers went down!
I turn 58 on April Fool's Day - my husband and I decided to go to NYC. I am excited
Will travel on the plane with a n95 mask and all that. MaleBC - how was your scan?
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Its back! I mostly read on this thread, but missed you all very much last week!
Aprilgirl1 i was wondering if your name meant we have the same birthday! Have a great one.
Patgmc thank you for all that information! Congrats.
Rk2020 yay on the tumor marker
Hi to everyone
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Dancemom, happy birthday to you, birthday twin! I am also a DanceMom - my daughter is a dancer (BFA from University of Utah in Modern Dance)
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haha. My kids like to dance, but I'm the one with the BFA. 😉0 -
Aprilgirl1
Thanks for asking, my MO decided to postpone the scan by 3 months to June 🤔 , the discussion was that clinically I am fine and 3 months on Ibrance +Fulvestrant is too early to do a scan !!
Also I discussed about my P1K3Ca mutation and was told that it will be targeted in future ..
Am totally confused if all this is correct ?
Any thoughts anyone ? Please share..
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Had my Pet, all good, hope we all continue to do well.
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yay! It’s back !
I noticed a few days ago but I was in a mental funk. I’m sure you can all relate. Trying to decide whether sending my six year old back to in person schooling and risking COVID has bothered me along with my ascites issues - I have a handle on it but I drain everyday -I just want them gone
And I’m super tired.
i just finished my 5th cycle and I imagine a scan is coming up and hoping for the best thereI’m finally getting my endoscopy in 2 weeks to make sure there are no varicies . I have anxiety over that since it almost killed me in September -had to fight to get this appointment bc I fell through the cracks.
Taking a road trip to Toronto in June and hoping I’m well enough to withstand the drive and not let anyone down
Suppose I should be grateful in a lot of ways. I’m trucking on.
Glad to see you all again and it seems we are all doing relatively well in a matter of speaking
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Hello lovely people! Yes, Aprilgirl, LET'S ALL GIVE A SHOUT!! Such a pleasure to see you all again ❤️
RK, sorry about your, ahem, sacrum pain. I'm truly hoping and praying xeloda will do its job for you. Did you end up trying lynparza? Forgive me if I've mis-remembered that, it feels like 8000 years ago we were talking about a sleigh ride with hot cocoa...
PatGMc, thank you for your update, I've heard before about the Y90 treatments and they can be harsh. It sounds like they worked for you, so glad to hear that! And 10 years with MBC, you are an inspiration and a blessing.
Spookiesmom, hurrah on your PET results! Hope Spookie is doing okay, too.
MaleBC, my MO wanted me to wait six months between scans for the first time, since my last scan showed no change. I feel kind of anxious about that, and I'm going to talk with her about it at our appointment next month. My understanding with the P1K mutation is that you can try the targeted therapy for that mutation after ibrance stops working.
I've been a little sad recently, but feel better today. Trying to get some work done on our house so I can relax that even though I might be falling apart, at least the house is not going to fall on my head. Had our front stairs refinished and resealed this week so only 7 more items on my list to go! And one more time, SO GLAD TO SEE YOU ALL!!!
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B-A-P, we were writing our posts at the same time, I wanted to give you a shout out, and also offer pocket duty for your endoscopy. Makes sense you would feel incredibly anxious about that, I'll be praying all goes well for you.
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Spookiesmom- WOOHOO and a big congratulations for your clear scan! Onward!
B-A-P - good for you that you have an endoscopy scheduled. It is overwhelming and maddening that we have to fight to not fall through the cracks on so much of our treatment.. It is great to hear that besides the ascites you are doing well. I don't know what to think about Covid/schools. I realized recently that among all the vaccinated families we know, ours is one of the few that no one has "gotten" covid (contracted covid?). Hmmmm.....still fee like a sitting duck.
MaleBC - are you saying that you have the PIK3CA mutation? I know oncologists don't want to scan too early because they want to give the meds time to work but I would not want to wait 6 full months. But it sounds like you are doing well, which is great!
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Yes I have the P1K3CA muta
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thanks Cakes !
Aprilgirl - yeah I hear ya. Our in-laws have had it , my brother , my dad ect. But we have avoided it and I feel like it’s because I’ve kept my son home. He has someone tutoring him from the school an hour a day. And we do the rest but he’s been missing social interaction. Im gonna have a chat with my MO and see.
And yes ! I should have been followed by GI since the incident. No idea why I haven’t been. My MO thought I was. It was such a mess. Then the GI got COVID and so I’ve had to wait longer. i hate the endoscopy but I rather take care of things before they get bad (if they’re there again. Hopefully not though ). I’ve spent way too much time fighting to be seen that should never have to happen0 -
Aprilgirl1 my son's school has 41 REPORTED cases in 11th grade in the past week. They dropped mask mandate then had Junior Prom. smh. Its over 90% vax at school, so kids are doing ok. However, people forget that people like us CAN'T GO IN FOR TREATMENT if we test positive. Forget about the already compromised immunity issue.
Also, I work w 135 dif kids under age 7 each week. The mask lift is terrifying me. I do wish the preachoolers could take them off because they tend to stay in small groups. Its the highschoolers who are in 8 dif groups a day in school and who knows how many after school, who need to be masked.
Sorry if I'm repeating myself on this. I really am freking out.
Malebc, no mutations here. My scans were after almost 8 month- 6 full cycles of Ibrance, as I had to wait extra weeks and lower dosage twice.
I am in the midst of my "aggressive plan". 9/34 rad sessions done. But I dont think I can get scans for a long time because I have the TE from the mastectomy and can't do exchange for a long time. Not really understanding yet how all the scan timing works.
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Hi ladies, many things happened at once on top of everything else, I couldn’t keep up with the pace as I used to be and days passed one after one but I am sorry I disappeared suddenly I didn’t mean and please know if I could I would post for sure. I always receive support from you about cancer, treatments, anxiety of scans etc. I am sure I would have received support from you again if I opened up my chest but I don’t want to hijack here for my personal life, I can use your prayers for some levels of certainty in my life that reducing me for past five years. It took awhile to login here and system problems made it harder, I am glad the board is working now which I appreciate it more than before. I wish everyone peace. hugs.
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Hi Everyone,
Just checking in. It's especially nice to get an update from Pat McG. I broke my tibia and fibula on March 11 but the good news is that I'm at home, managing reasonably well. The "cast" came off last Thursday so now my leg is just wrapped in gauze and an ace bandage. It's stiff but not too much pain. I can put full weight on the left leg andI can do my interior stairs. Tomorrow I'll work on doing the outside stairs with my PT. The challenge is that I have no rails on my front stairs. The back stairs are tricky but I think I'll be able to use them. Once I can get to my car, I'll have a lot more independence.
I wanted to share what I think happened. I had probably had a stress fracture in my left shin bone for months. I had noticed a little dip in the bone and pressed down on it but there was no pain. I thought it was weird but didn't think anything of it. The bone seemed to just snap out of nowhere-I think it was the straw that broke the camel's back. My calcium levels have always been good but based on info I got from my primary care doc, I think I have not been eating a sufficient amount of foods with calcium. I take supplements but was taking both at the same time which she said likely made my body unable to absorb the full amounts.
I'll share her info on calcium in case any of you want to up your game. I'm making sure to have two servings of dairy now each day and am separating my supplements.
"The amount of calcium you take a day in supplements depends on how much you are getting in your diet. You should be getting about 1200 mg a day from diet and/ or a supplement. You should get no more than 500-600 mg at any one time as your body does not absorb more that this. Getting too much calcium can increase your risk of kidney stones. If you are taking calcium carbonate, it needs to be taken with food. Calcium citrate can be taken any time.
Find below a guide to calcium sources. Add up how much you are eating a day to determine how much more you will need in supplements.
Dietary calcium + supplemental calcium should be equal to approximately 1200mg/dl. If you are getting 1200mg a day of calcium in your diet you will not need a supplement. If you are getting at least 500mg in your diet, then on supplement a day (taken at a different time) should be adequate.
A Guide to Calcium-Rich Foods
We all know that milk is a great source of calcium, but you may be surprised by all the different foods you can work into your diet to reach your daily recommended amountof calcium. Use the guide below to get ideas of additional calcium-rich foods to add to your weekly shopping list.
Produce Serving Size Estimated Calcium*
Collard greens, frozen 8 oz 360 mg
Broccoli rabe 8 oz 200 mg
Kale, frozen 8 oz 180 mg
Soy Beans, green, boiled 8 oz 175 mg
Bok Choy, cooked, boiled 8 oz 160 mg
Figs, dried 2 figs 65 mg
Broccoli, fresh, cooked 8 oz 60 mg
Oranges 1 whole 55 mg
Seafood Serving Size Estimated Calcium*
Sardines, canned with bones 3 oz 325 mg
Salmon, canned with bones 3 oz 180 mg
Shrimp, canned 3 oz 125 mg
Dairy Serving Size Estimated Calcium*
Ricotta, part-skim 4 oz 335 mg
Yogurt, plain, low-fat 6 oz 310 mg
Milk,skim, low-fat, whole 8 oz 300 mg
Yogurt with fruit, low-fat 6 oz 260 mg
Mozzarella, part-skim 1 oz 210 mg
Cheddar 1 oz 205 mg
Yogurt, Greek 6oz 200 mg
American Cheese 1 oz 195 mg
Feta Cheese 4 oz 140 mg
Cottage Cheese, 2% 4 oz 105 mg
Frozen yogurt, vanilla 8 oz 105 mg
Ice Cream, vanilla 8 oz 85 mg
Parmesan 1 tbsp 55 mg
Fortified Food Serving Size Estimated Calcium*
Almond milk, rice milk or soy milk, fortified 8 oz 300 mg
Orange juice and other fruitjuices, fortified 8 oz 300 mg
Tofu, prepared with calcium 4 oz 205 mg
Waffle, frozen, fortified 2 pieces 200 mg
Oatmeal,fortified 1 packet 140 mg
English muffin, fortified 1 muffin 100 mg
Cereal, fortified 8 oz 100-1,000 mg
Other Serving Size Estimated Calcium*
Mac & cheese, frozen 1 package 325 mg
Pizza, cheese, frozen 1 serving 115 mg
Pudding, chocolate, prepared with 2% milk 4 oz 160 mg
Beans, baked, canned 4 oz 160 mg
*The calcium content listed for most foods is estimated and can vary due to multiple factors. Check the food label to determine how much calcium is in a particular product"
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Maui-must Dos:
Snorkeling, I think this is where there's an inactive volcano that has "sunrise bus tours" amazing! I'm big on sunsets but sunrise was on my sons bucket list so; it became a must do for us.
The Road to Hana (spelling?) I believe it's about 30 miles each way on the most beautiful all-day trip on a two-way winding road with stops all along the way. Foodtrucks, botanical garden & short (steep stairs provided) walk/hike down to black sands beach (I forget the name). We were in Hawaii for 10-12 days & it was our most memorable daytrip (leave very early in AM as you do not want to have to drive home in the dark. Bit scary & dangerous road to be on in the dark. There's an APP for that! The app is also a recorded guided tour. We didn't do this for lack of knowledge; but @ black sand beach-you May camp (tent & RV & I think there are accommodations at end of road if you'd like to spend more than one day exploring. Maholo to Ibrance to allow us "time" not sure how much so after my Nov '17 diagnosis—I cashed in my retirement (I know bit selfish) & surprize my husband & two teens for Christmas for our "once in a lifetime" (which honestly, I thought it'd be my last one). We have had (despite the pandemic) had many many good times between 2017 & present. Going strong with Ibrance/Femara combo. Just booked my almost 5-year since Mets DX trip=my SECOND "once in a lifetime" tour in Ireland in May. Any tips: packing, handling fatigue, must dos, ways to connect to family heritage? I saved every Penny of my SS disability during pandemic & planned all the while once we could travel we would do just that.
My hope is whether those in this "Mets" and/or Ibrance-beyond" club we didn't ask to be in all get chance to "Carpe Diem" & seize the day; as I've tried to do! Whether ur "adventures" are a walk around the block (literally taking time to "smell the roses") and/or mini-staycation trips (OMG precancer work and life being primary caregiver for Alzheimer's mom & psych issues with 2-teens simultaneously) responsibilities kept me from experiencing all the things life has to offer). I was sandwiched with way more responsibilities one "healthy" or so I thought as I had passed my 5-year "cancerversary" 2-years before this diagnosis.Sorry I'm getting bit off-track. On your thread. I'm trying to say:
Make a "doable" bucket list with those you love and "JUST DO IT" as all of our days are numbered with or without stage 4 DX! Took me a while to figure that out. So be your best version of your SELF & each and every day-try hard to find a reason to smile &/or make someone else smile. But I take Stage 4 now as a gift tgat I know my life is most likely (who knows🤞) going to be shorter than I'd hoped. No crystal ball will tell me how much shorter-so I do siege the day, everyday! I think it helps fight yo be an optimist; so when I'm feeling pessimistic & scanxiety (that slimes into my "psyche" approx every 2 months) hits; I don't just freeze and accept/allow it to bring me down; maybe I go into denial a bit; but I always see that so many others/right beside me and zillions of mikes away have a life worse than mine. I'm grateful for each and every day I have left. So I enjoy the small things I (when sandwiched with my life circumstances) & I move past it (even if only temporary) for as long as possible then I say: "oh-yeah" it's ok-I do have end-stage cancer & I may breakdown; I allow my irrational thoughts and self-pity and a day in bed; but I always try to keep that to a minimum & push-through & enjoy the most I can the time I have with "my people" & my "Pug". thanks for listening to my rant & best wishes to all. Sleep tight, sweet dreams & positive karma and vibes to all! Much Luv n prayers to all!
My apologies, when I got off-topic I should have broken away from this thread. I am not a frequent poster-but your upcoming trip to Maui-triggered all that was lent up since Mets diagnosis & if I can help one person trick themselves into believing like I do that there are way more positives vs negatives after Mets diagnosis: one last example:
I grieved so much after hearing words like Mets, Ibrance, 22-24-months (I cannot remember the term; but it is the expected amount of time I/F drug therapy combo gives you vs other treatment plans! Which for me has doubled & I have heard of woman in phase 1 of UCLAs clinical trial patient lasting 11+ years & going strong! I used to dwell on @what I'm "possibly" going to miss"… honestly, almost immediately I thought…wow, I won't see my 17 yo graduate college, fall in love, get married & have a baby. I'll never be a grandmother (but I had luxury of belong my psychol/& Alzheimer's mom, enjoy not 1 but 8 grandchildren and one great-grandson (all post lung-cancer not once but twice-2different types & 2 surgeries-she opted outta chemo AMA) I lived all our days left together (which turned out to be 20+ tears. We had many "moments"; but her strength positivity lives on in me as her best gift ever to me—tgat I WILL (if it's meant to be) see my dtr:
Graduate college (actually happening 5/15/22; get our matching tatoos (which I'm doing with her so she'll remember the day & to perhaps bring her comfort when I'm gone as it-it's definitely not on my bucket list), she fell in love, got a "puppy" & who knows maybe I'll meet either her or my 21 yo son's child and become a grandmom (definitely on MY bucket list) over n over like my mom, maybe I'll also see him fall in love and graduate college. Maybe I won't. But what I will do:
Due trying to see it all, do it all. My husband and I have talked about Ireland & Hawaii for almost 35-years! I've dreamt of seeing many of my Children's milestones since they were 8 & 10 yo when I was first diagnosed and had 6 surgeries in as many months! Some have come true and instead of sorrow for what I may not share with them; I do take much comfort in knowing there life will go on after I pass & I feel/see (actually, I know) that many good things lie ahead for them (with it without me here). I tell them all the time: don't worry I can see ahead for you; I actually visualize it all (not in a psychic way; but perhaps, like a little movie w/glimpses into their futures). I see an abundance of happiness, strength for their tough “life moments". Example my son wants to be a film producer: I see that happening & success with it. I know it'll all be ok for them and fir me & my husband. I also see my daughter married with children and great career. I see them both very happy & see them appreciate who they are and their struggles with my Long-term illness, etc. I see them supporting each other and my husband in my absence and know it will be ok for them as they’ll see how much I appreciate they’re love & support through the years & all the extra time I’ve had with them!
I've mentioned little about him: he has stood by everything esp cancer related issues for 35+ years. He's had his sorrows; but he has brought me more strength, love, laughter, adventures & taught me to hold tight to the positives & more importantly “let-go" of what I cannot control and in essence allowed me to be best-version of myself for almost 13 years since stage 1 DX & he gave me the strength to do so much. I'm scared to leave them all someday; but glass half full:
Least I can @SEE" that it's likely I won't be here for some things; but, I'll enjoy every single second that I do have here especially with my family!
Thanks again; I'd cut n paste this into another thread; but don't know how. Be well & be happy
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Baily, what a lovely post. I enjoyed reading it.
Carol
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Hello all. I just posted huge reply& I thank you for bearing with some of my rantsso, I need a little medical advice:
About a month ago, I began urinary symptoms. Took 1 week of Macrobid. The typical Symptoms subsided; but continue to wax and wane.I have not had a fever through this month. Hmmm? Maybe it’s because my immunosuppression won’t allow me to fight this???
My primary care doc (new) has been dealing with this with me:
1. Antibiotics prescribed and I took diligently 1 week course!
2. Symptoms subsided mostly from after my 3rdvdose
3. Wax and waning symptoms-causing more sleepless nights-
4. Primary orders: Pyridium (scary Med; but I may need to take??? Thoughts on this-scary side effects. May just push fluids & drink cranberry/Vit C drinks & Healy food; exercise, lifestyle, etc to hopefully avid more antibiotics
5. Silent: what to do if she prescribes more antibiotics-I’m afraid of C-diff (potential weeks/ months later side effects to hit me in Ireland or dtrs graduation day, etc.
6. Should my oncologist be more active in my treatment (esp since I think it’s failing/or if course an akways underlying thought: is this cancer SPREADING”?
7. Should I just go see urologist ir someone else to get scans, more extensive work-up to get to kitty gritty; I leave for graduation in 6 weeks and Ireland in seven!
8. I wrote my oncologist & he said “did u get antibiotics from primary doc?
9. I realize that they need to be courteous to each other; but I told primary I’m immunocompromised r/t Ibrance & I think my MO should ge brought in.
We’ll, thanks for any tjoufhts, tips, prayers, etc. Hard to sit back and not obsess over simple UTI. I’m optimistic (as you see in my last post); but I’m former nurse (worst type of patient—I’m told) & I do not want to fold jy arms as I feel MO & primary doc should be collaborating and making “grand” plan/geatures & they are not.
Though optimistic; I am scared. I can’t play doctor/nurse to myself as I don’t process/retain or even possess common sense to figure out my plans on how to move forward through this seemingly “minor” complication—which in back of my head is a huge Cancer amoster hiding and awaiting first chance to pounce on my PLANS for next few months and next several years (hoping I go past the 11+ years on I/F mentioned in my last comment).
Thank you all for your time. My best thoughts prayers good karma & luv,
Thx for your experiences, advice (most important) thoughts, prayers, help in picking me up and helping me figure this out: large or small issue: whatever it may be!
Thanks a zillion
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bailey5, beautiful post up above.
As far as your UTI, maybe they can prescribe something a little stronger. Sometimes it takes a few courses to kick it to the curb. I was prone to UTIs for a very long time. I now take a nitrofurantonin 50mg after I have sex, and it’s worked wonderfully. I also notice I get some burning when I urinate if I’m dehydrated, so make sure you’re drinking plenty of water. Good luck. That would be awful to have symptoms on your next trip.
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Thanks to all of you who share your ups and downs here. We all can gain so much from each other whether it's the good times or the hard ones.
Bailey, your "planning to go to Hawaii for so long" story made me think of this painting/collage I did featuring a couple with the same plans. It's called "Zip Me Into That Dress and We're Good to Go". (Note Don Ho waiting with the cab.)
Making art again and selling it was my big bucket list goal and I've had a happy career with gallery representation. (L Ross Gallery, Memphis). I've had lots more time alive than I dared to expect.....28 years since BC and 10 years since MBC, 5 Ibrance years. I have friends who are more than 20 years past MBC diagnoses so there's every reason to believe you can see your children meet those milestones. I wanted so much to see my granddaughter graduate from high school and that will happen in May. Extra bonus - She's an artist already selling her work and will major in art in college!
I pray that all of you have happy days ahead, my friends!
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