Ibrance (Palbociclib)
Comments
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To RK2020
Re: High FODMAP foods and Verzenio....to give credit where credit is due....the tip to avoid high FODMAP foods came from another woman on Verzenio. I found that sticking with low FODMAP foods helped reduce my stomach pain. For me the stomach pain would onset about 4 hours after eating a high FODMAP food. The best low FODMAP bread that I found is Berlin Bakery's Sourdough Spelt bread. It's pretty good especially if toasted. I could buy it frozen from my local Whole Foods or it can be order directly from Berlin Bakery. They make it daily and then ship it out. I did this once and froze several loaves.
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RK, Thanks for the info from the Ibrance site for healthcare professionals. I think I'll start having labs on Day 1 instead of Day 28 now. (My first MO wanted it done before my restart day so they could tell me whether to start or not. I’ve kept that as a routine.). Maybe it'll help my counts. LPG and WeninWI, sorry for the misinformation about labs timing in my post.
BAP. Thinking of you. Hoping that you gain some strength each day and that Ibrance is not too hard on you.
Snowdrop, That sounds like a stressful appointment, but maybe as you rehash it over the next few days you’ll feel some more clarity on how you feel about your MO and what you want. It’s very possible MO has her own trial in mind for you. Maybe it might be a good one for you? Just throwing that out there
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Thanks WenInWI. I used a store locator and found that Whole Foods is the closest store near me for the bread. I was hoping to find a store closer but I can just club my bread run with other errands in that area. I really appreciate this tip because I REALLY want to be on 100 x 2. I don’t see my blood ever tolerating 150
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RK2020,
When I was still working, I used to listen to Doctor Radio on satellite radio while commuting. There was a very good gastroenterologist who used to refer to the FODMAP diet as something that was very helpful for a lot of people who had gastro issues. In any event, if you google FODMAP, you can find more information about the diet. You may find it helpful.
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Thanks for all the helpful information.
I got the bloodwork on the last day of my 3-week cycle because, from what I understand, that's the practice when you're brand new to the drug. I go again tomorrow for bloodwork, which will be at the end of my first week "off." I'll be curious to see how the numbers change. Sounds like I may drop to a dose of 100 or 75 or even the 2-week on, 2-week off schedule. RK2020 Rosie24 WenInWI B-A-P thanks for sharing your experiences.
GoKale4320 - I heard the same message. No real way to boost those WBC. Darn.
My Vitamin D is low (30), so I am working on boosting that.
Do any of you participate in the Monday zoom call for MBC?
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LGP1111, I join almost every Monday. It’s a great group, and it has gone to 1.5 hours instead of just an hour. I may not be able to make it this week because I might have my grandson.
Sorry you’re having issues with D levels and Ibrance
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LPG111 and WenInWI, we seem to be on the same cycle as new Ibrance dancers -- I started cycle one on October 19 and ended the 21 days on November 8. My MO started me at 100 because of my body size (5'7" and 128 lbs.) My WBC dropped from 7.0 K/uL to 2.9 over the 3 weeks and NE# (the same as ANC?) from 5 to 1.8. My platelets also tanked -- from 258 to 127. (Before Ibrance I was on a PARPi, Zejula, which dropped my platelets to 10 before we got the dosage right. I'm also in remission for ovarian cancer.) The low WBC count worries me a bit, as it can make me prone to urinary tract infections. But I'm lucky in that I don't seem to be having many noticeable side effects.
However, a week before I started the Ibrance, October 12, I suddenly began having very loose, watery stools, which has continued now for more than 4 weeks. I can't think of anything that triggered it, and my MO doesn't seem overly concerned, other than to ask what supplements I'm taking. Tests showed no C. diff or other bacterial infection. So I'm glad for the FODMAP reminder -- I guess I need to see what may apply to me. After my Stage IV BC diagnosis in July, I made some pretty severe diet changes -- virtually no added sugar of any kind, cutting out unfermented dairy and most all gluten, no processed foods and eating a close to Keto diet, but leaning more toward vegetarian whole foods. The only additional supplement I added was berberine, to reduce glucose even more. I went for 3 months with the diet changes with no problem and a month with the berberine, which I stopped taking 2 weeks ago but hasn't helped. The almost-diarrhea doesn't seem to be an SE for anastrozole or Ibrance. I see my PCP on November 19, so maybe he'll have some ideas if it's still a problem for me. I've never had serious, chronic GI track problems, so this worries me a bit. I won't have my next scan until January.
Those complaints are little things compared to the discomfort and pain several of you are dealing with. I'm in your pockets, sisters, hoping for good progress. I've told very few people about my MBC. But here I can be myself with you, thanks to eloquent friends like Rabbit and the kindness of you all. You're each in my heart.
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LGP111
I know most of my experiences so far are related to taking Verzenio, but thought this might be of interest to you. Prior to my diagnosis of MBC and starting Verzenio my Vit D level was 46 and I was taking 4000 IU capsule daily. A year later my level fell to 33 so I increased my supplement to 5000 IU capsule daily. Five months later my level fell again to 26. On the advice of a homeopathic herbalist I switched to sublingual Vit D. The brand I get is SuperiorSource. I started taking 10,000 IU 5 days/week and after one month my level was back up to 36. I decided to continue 10,000 IU sublingual 5 days a week for another month anticipating that my level would get to around 46. I haven't had a retest yet. When my level is up to around 50 I plan to switch back to 5,000 IU daily sublingual. Verzenio definitely impacted my absorption of nutrients. Not sure if Ibrance can do the same, but taking a supplement sublingual results in immediate absorption and bypasses the GI tract.
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I did something "hopeful" today. It was my biggest attempt at "dreaming" yet. As a treat for getting through scans I bought myself some second hand Clarks shoes - brand new is out of price range - used is much better- having something good on the feet with bone mets all over definitely helps feel supported and like you have a good grip on the pavement - so afraid of falling and breaking something in slippery conditions, which is why I despise winter even tho the winter wonderland look on the trees is delightful as well as the savory delights that come with it. So I brought 2 pairs. One to wear now. And one to wear in the spring. Actually to wear to beloved and I's 20th wedding anniversary next summer. I dreamt of wearing those sandals in our folding chairs right next to the water and the light house we got married at eating D'Angelos Buffalo chicken wraps stuffed with shredded rotissare chicken, blue cheese, blue cheese crumbles, croutons, lettuce and buffalo sauce and soaking up the rays and breeze as we watch the sailboats go by.
Having said all that I'm in a weird place. I feel like I kinda relive the feelings of events that have happened in cancer's playbook to mess with me. Even with a few notches of experience under the belt and seemly things going as well as they can.."stable" and such. In true asshole form it's spread itself over all the seasons. Instead of Boyz 2 Men's Four Seasons of Loneliness. It feels like Rabbit's Four Seasons of Bullshit. Not really an eloquent way of saying it, but succinctly I guess....
While unfortunately I've learned to live with pain issues that don't leave me I was hoping the emotional part at 2.5 years-ish in would have gotten better. It has to the extent I sleep in some form now which makes everything better from that perspective alone. But still. I struggle alot. I'm afraid. Maybe instead of beating myself up about the emotional not changing as much as I hoped given time, taking the pressure off myself that I must deal with things in such and such way will help things turn a corner. I feel a lot of pressure in the outside world to ...I don't know how to put this have....delusional hope? Rather than grounded hope? They see my grounded hope as negative. "Don't stop dreaming, Rabbit". "Don't lose hope, Rabbit". This puts me into almost a depression because it makes me ashamed about how I've been dealing with things, which is the best I possibly can with the effort to improve my outlook also front and center. Its like putting your best foot forward and someone saying "Not good enough". I'm emotional creature, I don't know how to turn it off. Maybe with God willing more practice in things I'll get better at not being so focused on being realistic about things and dare to dream a bit more. I think you all understand what I'm trying to say.RK - I saw shortly after you posted your article someone a few hours later posted an thread about FDA and maximum dose too. I think this is such a good thing. If we can get away with a much lower dose and still achieve the same thing life would be so much better. Not just in terms of how we feel but maybe how long we can stick with something or to preserve a treatment that's working but just is too toxic to the body. What took so long to think of this I wonder, its not like we for decades haven't been screaming about this. Better options, less toxic options, don't ram the highest dose in and then only lower it after we look like we've been but through an F5 Tornado. Common sense. We get this. That's why we're pseudo Dr's around here, we have to direct our care so much we almost pretty much do. I agree with you that the trials should run concurrently and not consecutively. How are you feeling post rads, ok?
KBL - I'm glad the nausea is getting better and that's improving your eating a bit. Did the thyroid issues start pre-cancer or did treatments throw it off? Glad you've been enjoying some grandson time
prairiesea- I'm glad your MO is expecting enough improvement that eventually the bone marrow will get better, thats a good thing! Feel same about my MO, I like her but she's made a couple hiccups I didn't like along the way and she guards herself emotionally from me (I've seen her emotionally connect to me and then immediately draw back in protective mode) so bedside is friendly she just won't show often or let me show often the emotional side as it makes her uncomfortable sometimes so I've learned she's my MO, I'll just need to get the emotional part I need elsewhere, which is where you all come in. I too have seen MO horror stories and so like you I'm working with what I've got and she is learning to read me and I have my ways of getting her to connect to me so I'm viewed like a person not just a patient. My MO sees 30-34 patients a day, I don't want to feel lost in them, so despite her discomfort I share about me and ask about her in little snippets to "train her" I guess to see the human in me and not just my disease. I'm glad Verzenio is going okay and your navigating and managing SE well. Here's to a really long run and ANC stays up up
Candy - Sorry the sour tummy is hitting you a bit even on the lower dose, hoping that goes away like the increaed saliva did. Our newbie Katyblu has scans on 22nd too! Old school MBC badass and our newest recruit MBC badass both doing scans same day. Hoping for at the very least stable mable for you. I'll be in your pocket for sure! i'm so glad your place lets you know a couple hours after the fact because you travel so far, one less thing. We're all going to be jumping in between your pocket and Katyblu's. Be extra kind to yourself, I know scanxiety is already here.
Cakes - "it's possible you won't ever be in a normal range again" and I laughed and told her, "oh, you don't know the half of it!" --- LOL I like that response! You know your idea of having a little bag ready with a few essentials isn't a bad idea. When I was about to have my mastectomy surgery the stress triggered my period as my ovaries weren't out yet. They wanted me to wear these see through undies to surgery and well, lets just say the hospital isn't where you want to be when Aunt flo wants to flooooooo. Glad to hear the sleeping regime is going good. We need an arsenal or the winds blowing the right direction to sleep it feels like. Sleeping sure does help so much in dealing with all this. "strongly connected to the earth" LOL
Any geese fly overs recently? Aprilgirl - "I told him that we always have been careful to save for "rainy days" and retirement but guess what.....IT'S RAINING, at least for me" - this is powerful. I'm glad you took the plunge and booked that trip. The treatments in place are to help us live, so lets live, lets do what they are allowing us to do. Your husband has the same exact thought process as mine did. He took years to mean 10 + too. Cancerversaries are truly bittersweet. Getting to look back and say Holy Cow, look how far I've come is a very surreal thing. But looking ahead is exactly the same. Surreal. You hit the 2 year mark in a couple days. Take it from me the resident half empty girl - Look how far you've come lady. Marking these milestones and the fortitude in making them - it takes alot of guts - it really does - as you say, this disease isn't for the faint of heart - you my friend - are the eye of the tiger - dun...dun dun dun...dun dun dun...
Snowdrop - Tact is a virtue imo and some people absolutely don't have it or lack it when it is most suitable. Seems to me she's jumping the gun quite a bit to even be having these types of discussions since your Scans showed diminishing or stable mets. Why is she already talking the what if's of progression? Shouldn't that occur if there is progression not if there isn't? Sheesh. I can smack her around for a bit if you like, I've got hotflashes and I'm supersonic/charged lately aka moody. Shall I make a recommendation for a hot doc with twinkling eyes to change the atomosphere?
Rosie - Glad to see another OG poster check in
Waving Hi back!Katyblu - we are all on pocket duty for the 22nd!!
LGP - Welcome to the thread! Yep, we've had a few drop that low. But no worries, we've had several need to jump down to 75mg and they've been holding steady there.
BAP- Your young like me but with young children, I'm hoping things hold steady so you can enjoy the holidays with family. You have been through a very very rough time. I sincerely pray you get to coast for awhile and just enjoy home and family. Ibrance, play nice with our new dancer, she deserves a damn freaking break! And RK makes a good point - if you do need to move on - its not lost. You've got a new group here to support you no matter where you go treatment wise. Once a dancer, aways a dancer.
Anntop - I feel like Ibrance has a two pronged gastrointestinal approach. Cement or Swamp water. And sometimes for added measure it gives us both, sometimes simultaneously. I find it gives me both issues and no rhyme or reason or predictability with it. Are you on something for maintenance for the previous ovarian cancer - was that what the Zejula was? Looks like a drop down to 75mg might not be a bad place to go considering your counts - bone marrow might a bit tired too from prior treatment with the other cancer dx. My goodness you've been through alot. Here we can be "Real Real" - not the veiled real we are with people who don't understand. Its nice to drop the veil once in awhile and recharge the batteries to get through another week with ladies who can get and understand even the implied things I don't say. As my MIL says..."They are your family"...Indeed you ladies are
Love to ladies
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Rabbit, I'm so sorry you're struggling. I totally understand it. I've been between tears and anger and know it's the Xeloda because I wasn't like this before I started. I'm wrapping my arms around you with a big squeezie hug.
I've had thyroid issues since my 30s. I'm 60 now. It's just lately it's been wonky where I can't get it in check. I'm now above normal, so back to hypo. I've upped my meds again and will test in a month. I may have to get off the Armour and go back to synthetic and see if it works.
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Rabbit--- "Old school MBC badass" LOVE IT. Hugs from here.
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Rabbit - thanks for the encouragement. Had a week off the 125mg dose and my WBC counts creeped up but still nowhere high enough to resume treatment at even the 100mg dose. My mind worries about not being on anything (except letrozole) for too much time, but it’s out of my control (like so many things in life!). Also, I totally appreciate and relate to the idea of being “real real” with others and am grateful for a safe place to do that.
WenInWI - thank you so much for the input on vitamin D. I eat a vegan diet and it’s hard to keep that number up. Sublingual sounds like a good approach.
Hope everyone has a good weekend.
From soggy Portland
Lisa0 -
Rabbit you are awesome girl, you know how to cheer up! Yah I was thinking if that hot Er doctor was my oncologist or at least my pcp!
)) we all have ups and downs, and I am thankful we have each other in this....Thanks ladies for support, my MO is running couple of phase one trials, but I don’t have heart to even look up the information..
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Rabbit, thanks for the shout out! I’m so sorry you’ve been struggling. I’m new to this world but I can totally emphasize with you. Sometimes I’m having a good day and sometimes a simple statement will devastate me. Just know that we are all here with you.
I swear, all I’ve doing lately is doctors appointments. Thankfully my blood counts rebounded and I was able to start cycle 3 on Wednesday. I was able to read my chest scan from the ER today, looks like I may have new mets on my humeral heads. Maybe they were there before but I don’t think so. I’ll know for sure after my scan on the 22nd.
I took a few days away to celebrate our 16th anniversary. The DH and I went to a German Festival and then to a fancy dinner. Many fun times were had! And starting next week, we’ll have visitors here. My DB and SIL and nephew will be here for Thanksgiving. And the next week my parents and grandmother are coming for a week. This will be the first I see any of my family since my dx. I’m kind of nervous and excited and worried. I’ll be happy to see everyone but I’m not sure how I’ll feel with so many people in my house. It cranks up my anxiety.
I just want to say how lucky I feel to have such a wonderful group of women who can relate to all these emotions and thoughts I have. Thank you all for being a great support system!
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Hi dancers, I have not posted in a bit but I have been reading! I was waiting until I had my onc appt/faslodex injection and blood work appt, which was today. Everything was as expected, blood work ok to start so just took my pill 1 of pack 24 just now... I did take it with a vodka/soda and lime, pretty light on the vodka but it's a celebration. I am having a toast to the fact that TODAY is the 2 year CANCERVERSARY of my STAGE IV new oncologist meeting. I guess I received the dx a week earlier but on 11/15/19 I met with my new oncologist and her PA (who looked terrified) at 4pm on a Friday where she gave me the news that I was indeed stage IV, she fast tracked some additional body pet scans and a brain MRI (she wasn't worried that I had brain mets but offered a brain scan for me to reduce anxiety). My husband was there, too. I had just refused to put on a gown for a breast exam as they have been giving me mammograms for 11 years, last one was the month before which all have been beautifully clear. "I WILL NOT PUT ON A GOWN - THIS DID NOT COME BACK IN MY FUCKING BREAST! YOU PEOPLE HAVE REFUSED TO GIVE ME ANY OTHER SCANS AND LOOK WHERE WE ARE NOW." It's a long story but I had been fighting for some scans for quite a few months by 11/2019. I found out that my PA Kelly was brand new that fall 2019. In the past 2 years she got married, we weathered a pandemic and she had a baby in April 2021. I have been on Ibrance/Fulvestrant for these 2 years and it has worked well...so far, so good! I brought her a baby gift today and in my card I told her how much I appreciate her and the milestones she has had while helping people like me. She saw a patient earlier this week that is on her 5th year of Ibrance and doing well and I sure hope we can all ride those coattails. I did tell her I am always searching for some statistical significance in any nuance of my treatment, blood tests or current status with scans. I don't see any. She can't tell me how long this will last. It is A LOT for us to bear. The thing is , I love my job but if I knew I only have X months left before I have a progression and the next treatment will not be as easy for me to tolerate, I would probably quit working. But I don't want to quit. I guess it's a gamble, roll of the dice.
RRabbit - you are so eloquent in how your share your feelings... and your words are achingly beautiful. I also call that brutiful. I am PROUD of you to buy the shoes and two pairs! Make some plans, heck ya! I share your feelings of .....the weird place. Happy to be here but truly wish we had a crystal ball, some kernal of info to glean some statistical significance to show us how long we have. I am so sorry you are in pain, and have learned to tolerate it. I am happy that you are stable and feeling some hope, or making strides in hopeful plans, working towards dreaming. It's all we can do! But yes, we are having the rainy days that we saved up for. Thank you for acknowledging my previous post and supporting me!
Taking a deep breath, I need to remind myself of the good news....the good news is there are lots of treatments and if one gets sideways we have more to try. Participating and connecting with so many people on here has opened my eyes to the vast amounts of treatments that work well, so we can have that in our back pockets. Candy, Prariesea, KBL, BevJen, RK2020, y'all had to pivot for one reason or another and are doing well.
Candy, I sure hope the nausea is less and you are getting used to lynparza. You are an "old school MBC badass" for real.
Snow-drop - keep us posted, sounds like you are staying on Ibrance for now?
KBL - hope the emotional triggers from Xeloda calm down. It's fantastic if the drugs work, but would nice if they weren't emotionally triggering???!!!
LPG111 - this is the place to be "real real" and let it out. We get it! I am north of you in Seattle and wow is the weather nuts.
Katyblu - happy anniversary! Happy you took some time to celebrate. Enjoy your family visiting! I am flying tomorrow to visit my parents and will also see one of my sister's and her family. I feel like her kids give me weird side eye looks at first but after a couple of hours they realize I am the same Aunt I have always been. In your pocket for the 22nd!
B-A-P - hope you are doing well and infection free.
SF-Cakes - how you doin'?
SondraF - when is your surgery? Hope you are doing well and getting things ready to take some much deserved time off!
All of you -let us know if there are scans or appts coming up that you would like support for!
Today I agreed to participate in a breast cancer Study. It is just additional blood vials taken at my monthly appts for a trial that will be testing MBC patients blood for CTC's and CTC clusters. Interesting. It is for the Cheung Lab at Fred Hutchinson in Seattle. The study representative showed up at the end of my appt. Perhaps participating in this Study will help us have some add'l and more significant stats to hold on to in the future. I agreed to do it, I guess I qualify as they came looking for me specifically which makes me think they chose my MBC profile? That part was kind of weird but if I don't need to have add'l appts, it won't keep me out of any future clinical trials/study's and it could do some good, contributing add'l blood is something I am happy to do.
Cheers! Time to finish my cocktail and start packing for my trip;)
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Aprilgirl, I loved reading your post, and your determination to get the right scans for the right diagnosis and the right treatment. I'm sorry you had to fight for it, though - good on you for refusing to put on that damn gown! Two years, wow, it's great to hear your meds are still doing their job and I want them to do their damn job for many, many more years for you! Enjoy that delicious beverage!
It's such a mindfuck (I was trying to think of a non-swearword equivalent, but couldn't) that we can feel okay now, but AT ANY TIME that can change. I, too, love my job and really try to appreciate it every day that I'm working, yet I can't help but worry how much longer I can do it. Is there anything that I want to be doing that work is preventing me from doing, is what I ask myself. I don't think so, not right now anyway. I mean, covid has prevented me from doing things I want to do (theater, travel), that stupid crappy virus! Since we seem to keep finding new things in my lungs, I'm pretty scared about my next scans, but am trying to be grateful for today. I just want so many more todays!! Even if they're boring! Boring, uneventful days - bring them ON! I still love life, maybe it would be easier if I were super grouchy and bitter.
With the days getting dark so much earlier now, I was startled by the moon last weekend as I was finishing up in the yard in the twilight, and I started crying, gazing up at her. These are the tears where I'm feeling all the feelings at once. Joy at the beauty, sadness at the loss, anger at the unfairness, etc. Deep cleansing moon-bathed breaths. I do want to get back up to the island I grew up on in Washington, and see the stars again from that perspective. Just little me, standing on the planet, a little speck in the universe. With my new Judi Dench haircut.
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Aprilgirl1, thank you. I have to say the last three days have been much better. I was able to get a really good cleaning of my home done and laughed a lot with my husband, so I’ve turned a corner this month. Still feel good today.
I’m sorry but not sorry you’re having a cancer anniversary. Sorry you have to have one but so glad you can celebrate being here as well. It’s hard to believe how time flies after diagnosis. I’m grateful for every day, even when I’m crying.
Hugs
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Thanks for the shout out Aprilgirl. The reduced dose of Lynparza - from 600mg a day to 500mg - helped the nausea. I still have episodes of nausea, but it is not all the time like it was. So it is better. I scan next week so that is the true test - if the Lynparza is working on the cancer.
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Candy, is your scan on 11/22? In your pocket! Happy the nausea is lessened.
KBL - every day is a blessing, for sure !
SF-Cakes - the beautiful ordinary days working in your garden and admiring the moon - such beautifully written , "all the feelings all at once". Sigh. I love Judi Dench- I'm sure you look super stylish!
Thank you all for celebrating with me on the 2 year milestone. Today's ear worm ...."go ask Alice" by Jefferson Starship" with Grace Slick singing "remember what the Dormouse said....feed your head".... I think this is a shout-out to our surreal lives with MBC and SF-Cake living in SF where Jefferson Starship is from, and the city close to where I grew up:
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Well, its that time in funkytown when you pick yourself off your tooter and trudge on. While getting off my royal duff feeling sorry for myself I was reminded of that Ibrance side effect I guess I've become famous for highlighting. It sounded like someone thumbed really quickly through a couple thousand page book - long and flappy. Not the usual bullfrog bellow. Beloved peeked his head around the corner "I heard that!!" with a big smile. "Me too!" I said, "I made it, I claim it!". Blaming it on the dog or a cat is long gone, might as well fess up to the offense. Thank goodness the offenses are just blustery and do not usually carry the additional offense of a deep inquisitive sniff of the air proceeded by a gag reflex and shouts about where that unalluring fragrance came from as I cheshire cat grin inside - serves him right for leaving dishes in the sink..weenie! At least he's been spared the one that sounds like the fireplace in the Amityville horror house for awhile.
KBL brings up a point. I never thought to consider the medicine etc could be to blame for some of this and then I looked up menopause symptoms and benefits of estrogen. Its amazing how much estrogen effects us and when you lose it a whole host of things can happen in the body, emotional and physical. Chemo had a lot of side effects and during AC I also did Zoladex hormone therapy at the same time so I'm not sure what was from what but it was ROUGH. I recognize some of the emotional stuff and know hormone therapy can mess with your emotions a lot plus with my ovaries gone etc. You know, putting a cause to all this might be that missing link I need to deal with the emotional. Maybe I can say. "This is not me, this is the medicine etc talking". Because its not me, NEVER had these problems prior to cancer and I've been waist deep dealing with crap and been able to muddle through much better than now. I am however weighing some heavy decisions. My pain level has amped up a notch, if it goes up 1 more it will be just too much for me to grin and bare and having exhausted everything but the heavy hitters to find relief I feel I am in assessing the situation stage. I'm waiting til after my 40th Bday a couple months from now and will revisit my thoughts then and see how I feel and see if this is just a temporary uptick or if its swinging toward gnashing of teeth territory. I'm going to enjoy the holidays dang it.
I have to admit, I haven't talked about this elsewhere and I haven't since the problem surfaced because frankly how do you talk about it. I'm also upset/struggling with upset about the sahara vajayjay effect of hormone therapy/ovary removal surgery. Intimacy has not been possible since not long after my ovary removal surgery which was Oct 2019 . Its like razorblades if an attempt is made. Beloved is wonderful about this. I feel silly crying about broken ladybits, but still....in a discreet way, I wish to say I miss intimacy in that way very much and it just adds to a pile of things I feel I've lost. Stolen pleasure.
Thanksgiving is coming. Its mostly coming out of boxes, cans and the freezer however I am going to attempt my chocolate chocolate chip zucchini bread and if I'm not too worn out a carrot cake loaf. Beloved's back is doing better from the strain he had a week or so ago. He's back to tarpin' loads - I should tarp mine by not being a worry wart tho harsh weather will be here soon and he'll be working in it. My hackles are up in winter hoping he'll be okay and some idiot driver won't test his 80,000lb+ vehicles ability to stop.
Candy - hey, that's what you are
You, Cure-ious, Pat, Rosie, Simone, Iwrite etc original OG's to the Ibrance dance. You were all here when I first got here. I look up to all of you. I'm there for pocket duty on the 22nd, badass Aprilgirl - I'll not only raise a toast to your 2 year anniversary, but to your yelling line at the miscreants that severely dropped the ball - well done on that girl, woo! That clinical trial sounds like an easy one to do and your helping with just a couple extra vials of blood. That's awesome!
Enjoy your trip! Snowdrop - I knew that would be the ticket. Hot doc on the way - with twinkling eyes and one of those cancer cell melting smiles to boot
I have to say, your onto something. Eye candy sure is nice to look at rather than the venus fly trap eyebrow look I've run into, where your not sure if your the patient or the prey. Wishing/hoping all the best for you Katy- happy happy anniversary!! That sounds like a wonderful time out with hubby. Sounds like you'll have a steady flow of people and love filling up your home in the next several weeks. Take it in stride, it may be emotional in the beginning but loosen up as everyone remembers your still you - same happened after seeing beloved's family after dx. Emotional but we ended up having a great time. Enjoy and Savor. Dr Appointments kinda do feel like a revolving door - time flies it seems and your thinking, "I was just here?!" Always happy to have another dancer to be able to bounce things off of and who shares in everything this all encompasses who understands/relates - your presence is one I enjoy
Pocket duty for you too on the 22nd! Cakes - I think you used the appropriate word - I don't think there is any other word that gives that needed extra something something to drive the point home of exactly what we content with. That picture you drew of you outside looking at the moon sounds like so many of us. We appreciate these things and it wells within us a flood of feelings that you can't be sure exactly which one your feeling- all are present like you say. All you know is that your squirreling away that moment, the awe. I do this on drives out. I'm the first to catch a chipmunk turbo tailing across the street or notice the fox stalking a wild turkey in the distance or when our nearby resident bald eagle is surveying the land on his favorite tall tree in a field not far from the main road. Your just struck with the beauty and also the realization that things can change. Sucks. But doesn't suck to have all of you
This thanksgiving I'm for toasting to each other
This thanksgiving let's raise a toast to each other by posting a picture of your cocktail of choice even if its a bit post thanksgiving as we celebrate with family. In honor of how far we've come together and that we are indeed family here too Love to all of you
I was listening to Tom Petty recently - "I won't back down, I'm going to stand my ground" - Yep, Yep, Yep
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Aprilgirl- Yeah my scans next Monday the 22nd with MO appointment right after scans so I will know the results that same day.
Hey where is PatgMc? Have not seen her post in a while.
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April Girl - woohoo on the celebration ! Two years is fantastic and I can only hope they Ibrance will give me that kinda time. Thanks for mentioning the woman you met who’s on her 5th. It’s always wonderful to hear. just like you, I was refused scans but due to my age and was de novo. That was 3 in 2018 and when I come to think of it , I’m positive I’ve had cancer 2 years prior to that at 28. But no one will admit to it.
I’m currently , as far as I know , infection free and hope this time around , to remain so, especially with the reduced dose. I’d like to not be back in the hospital at all in December. My 34th birthday and Christmas is coming up. And as morbid as it sounds , it may be my last (I really really hope not ) so I really just want to celebrate it my way and make it memorable for my son.
I had bloodwork today and see MO tmr and if All is well, I’ll be starting cycle 2 on Friday along with my very late 3rd loading dose of fulvestrant (thanks cyber attack , thanks infection )I had a bit of a rough mental day yesterday as we all go through. The ascites Is such a pain in the ass. The drain, while I’m so grateful to have it and give myself comfort , bothers me. I see a tube sticking out of me and go “really ? This is my body now ?” I just want it back. And with the portal hypertension I can’t stay active , my identity is being stripped. But I’m trying to remind myself that I’ve made it through three death sentences (was told I was dying a few times plus had the internal bleeding) and that truly things just take time to settle. All I want is to be around for my son, and I’m still here so I try to be grateful to my body for surviving the odds. But ya know , I’d like to stop looking pregnant now. So fingers crossed the ibrance does the trick and lowers the fluid.
Fingers crossed for staying infection fre
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Aprilgirl - that was certainly quite the celebratory post there, but I think you summed it up well. I truly hate my current job, but I have a supportive boss and a direction of travel for where I want to go next but... Im afraid of making plans. Or of chasing something new that could bring joy and then have cancer take it away. Its a weird no-mans land of not going forward but being unhappy of feeling stuck. Its not even a huge overhaul as my past experience and skills transfer about 60% over, I just need an update on current approaches and some data background and we are good to go - 6 months of moderate retraining tops and work will pay for a course. Im scared to finally love what Im doing and then cancer gallops off and I cant work due to fatigue or whatever. But I know if I dont make a change I will regret it so I am going to go for it. If not now, then when?
Surgery is 28th, I've got last discussions with surgeons this week, pre-op and MO on Monday, Covid and last checks next Thursday and we are good to go. I'm off work from Friday and intend to go rampaging across town with the credit card next week to pick up food bits for Christmas I would otherwise make but can't this year, surgery shopping, Boy gift shopping, whatever the hell I fancy shopping. I also need to do some Christmas cooking - the sugar cookie dough, the cannoli pound cake (in mini tins for the dessert board), red cabbage (for me), stuffing balls into the freezer. We love the cooking and baking bit of Christmas, I want to make sure I can do my part while overseeing Boy doing the main bits (venison wellington, indian-spiced ham) though I think hes secretly looking forward to having Kitchen Time for once
I did go to a concert on Saturday for the first time in over two years and it was so much fun! I knew the venue, I knew the type of crowd (highly likely to be triple jabbed and responsible, and they were checking vaxx status at the door) so I slapped on an N95 and went. Two years ago I was supposed to see the same band with the same friend, but my back was about to fall apart and I couldn't go. He noted Saturday how I looked so much better than I had in a really long time, how bad did I look before diagnosis?!
Rabbit - here is the cannoli pound cake recipe, in case you want to be inspired to try something new. Its pretty easy and only a few steps with rave reviews!:
https://smittenkitchen.com/2015/10/cannoli-pound-c...
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Katyblu - happy anniversary! That does sound like a really fun time. Glad you could start your next cycle, and I hope your scans show nothing new.
April1Girl - I love your posts - so encouraging! Yea you, joining that study. I hope it yields great information.
Rabbit - LOL! I was eating raw broccoli (I don't know why - I've been eating it for YEARS - and I don't see that it's helped me). little pieces of broccoli, everywhere!
B-A-P - here's to a wonderful Christmas celebration AND birthday!
As for intercourse, a doctor recommended Replens. So I tried it, and it helps. It's not like the old days, but it does help.
And then my job and the cost/benefit analysis of keeping it versus freeing up time to do things I want to do. It's such a tough call. I am working for only one reason - health insurance benefits. If I keep working 6.5 more years, I could retire with health insurance. In normal times, that doesn't sound bad. But I'd also hate to work up to the point of disability and then not be able to do anything fun with my time. Currently, I find it difficult to get to the office on time, and today I was passive-aggressively threatened by my supervisor. I drive East in the morning and with the time change, the sun is a direct laser at all 50,000 drivers ahead of me. (Too bad the solar beam doesn't cure what's ailing us) So for now, I am taking it in 6 month intervals and reassessing the situation.
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Rabbit, I have tried a few things, but nothing helped like estrodial. I said F it. Quality over quantity. I am on it again. I have not stopped in the sex department, but it’s so painful. I’ll be damned if I’m going to live like that forever. I told my onc yesterday, and she didn’t hellraise with me. We shall see if it works like the first time I had it before cancer.
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Hi Ladies (and gents if we have them),
Estradiol, eh? Replens didn’t help. Sahara indeed!
Sometimes I will read a Kindle romance to try and remember the old days. I tell my adult children I’m reading historical fiction. That’s exactly what it is!
Lifting a holiday toast (Margaritas and / or Prosecco) to you all! We’re still here…a little more battered, but still full of life and mischief 🍾
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Well, I’m going to come back off the estrodial for now. Two of my tumor markers are finally dropping a good chunk, but my 15-3 jumped up 100 points. Estrodial? Who knows. Why can’t they all trend down at the same time? Grrrr. My CEA has never been in the normal range, and it’s normal right now. Woot! I have to say, though, I’m now on Xeloda and not Ibrance, so I just wanted to clarify. I still come here because you all are my first go-to group
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That cake soamazing. I just may try it. I was stuck in a job I hated too. Really just working for insurance. The day my stupidvisor was going to measure my shorts, cause they were “too short “ I quit. Felt like a 100# weight had been lifted. Do what you need to do.
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Thank you all for your anniversary wishes!
April - Happy Cancerversary! Two years is wonderful! Have a glass of something delicious and reflect on your journey so far. I totally agree with you on the "no more gowns!", my "rebellion" is no chaperones or other doctors. I've had enough people look at my wrecked body, I don't need or want more people in the room. Thank you for participating in the breast cancer study! Nothing like more vials of blood 😂🧛♀️I love me some Jefferson Airplane!
Cakes - I think your word choice effectively defines our predicament. Every morning I see the cosmetic signs of this disease, with my scars and misshaped hamburger bun foobies. Throughout the day I feel the physical signs, exhaustion, pain, neuropathy. And at night the emotions pile up. You're completely right, we can feel okay most of the time and then -bam- all of a sudden we can't go about our normal activities. Your tears are well justified. I think many of us go through the same.
KBL - I am glad you've been having great days! May they continue through the holidays!
Candy, I'm so glad the nausea is abating. I'm hoping it decreases even more
Rabbit - So many thing I want to say and discuss… First off, I will say that my, ahem, flatulence has gone out of control. I can no longer hold it in and sometimes it even surprises me. They mostly are harmless, but some have even caused me to roll down my own window 😂 I'm so sorry that you're dealing with all these feelings and emotions that you didn't have before the dreaded "C". I unfortunately had depression and anxiety prior to my dx, so the forced menopause and awful dx have only exacerbated my previous issues. Oh well, that's why I have y'all to fall back on! I didn't know you were younger than me though! I just turned 41 a month before the MBC dx. Here's to your upcoming milestone 🎉 🎂
I'm glad you brought up the hard issue. I knew I wasn't alone but how can you brooch the subject? So after my first dx and chemo, it started getting very painful and I also had no libido. In the last year my libido has improved but the pain has not. It's probably been 2 years or so for me. I started seeing a pelvic floor therapist but stopped because of my new dx. I just feel so awful for my DH. And I miss the intimacy. I was told to try Replens and coconut oil. Maybe I'll try to brave that this holiday season.
Thank you for the advice about my family visits. I'm looking forward to it and my brother has assured me they understand if I need some quiet time. For Thanksgiving I'm making some of the sides but we've ordered a smoked turkey breast and honey-cured ham. And my DH is making a Kentucky Derby pie - it has bourbon in it!
B-A-P, I'm glad the infection is gone. May you have a wonderful Christmas and birthday! I hope you'll be able to start your second cycle this week.
Sondra - Yay! It's so close to your surgery! I wish you an easy surgery and speedy recovery! I hope you can finally love what you do so that you can have some calming peace. And a concert? That sounds delightful!
GoKale - It always comes down that pros and cons list (or cost/benefit analysis if you're fancier haha!). We'll really it comes down to money. I hope you can find a solution to balance out needing insurance and not working to exhaustion. I'm trying to balance out my retirement now. My biggest issue is that I can no longer meet the physical requirements to be in the military. But I'm trying to make it 2.5 more years to my full retirement. We'll see…
I am having a hard time with a few things…. My biggest issue is that I'm fat. I've gained 20-25lbs since June 2020 when my thyroid crapped out. And I think all of my weight went to my middle. I had to be new uniforms earlier this year because I was too fat for my old ones (the same size I've worn for my whole career). Now my fat uniform pants are getting tight. Yes it's my fault I'm fat, we'll mostly. And since my emotional state has been all over the place, so has my diet. There were many days I went straight for the carbs or chocolate or both. I was in the best shape of my life when I was first dx'd. I was power lifting, running 5k/10ks, and doing yoga. But surgery and chemo ruined that. I started to get back on track the year after but then I had a scare and I went back to the beginning. After that I was heading in the right direction, the DH and I ran/walked 3 half marathons and I was going to Orangetheory regularly. Then my thyroid decided to go into overdrive. And then COVID lock down. I was working out but not as intense. And now I'm trying to go 3-4 times a week to work out at my pace but it depends on my pain and exhaustion levels that day. I know I need to fix my diet and portion control. But I love food and don't want to live on chicken and broccoli for the rest of my shortened life. I'm just sick of it all, sick of being depressed, sick of the pain, sick of all the pills I have to take, and sick of hating how I look from the neck down. I guess I'm just venting here. And I hope y'all understand. I just…. 😔
Thank you all for listening and understanding. I truly love this community. You all make my days better. ❤️❤️❤️
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Katyblu, thank you. I’m so sorry for what you’re going through. You are definitely not alone. I think we all need to give ourselves a break and understand every day will be different. Oh, how I wake up in the morning hoping I feel good and can take on the day. Those tough days, I’m just going to let them happen and hope the next day is better. The other day I put some calming music on with my headphones before bed. It was so nice and really made me feel relaxed.
Any time we can have our minds go somewhere else rather than to cancer is a gift. I cleaned the house the other day with headphones on and get-up-and-go music and was so surprised how much I accomplished
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