Ibrance (Palbociclib)
Comments
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Yup! Seriously! I'm glad too Beloved walked away with only pretty scrapped up forearms and knees. He just said it felt like someone pushed him real hard from behind. It tooked Beloved a few mins to realize what had occurred, like I said he said it felt surreal. One minute he's climbing down from his rig after tightening the tarp on his rig's trailer. Next thing he's on the ground. The kid who hit him was barely 20 if that beloved said and the kid was so shook up. He kept apologizing over and over and was a wreck talking to the cops. I'm glad nothing more serious happened for beloved's sake, for mine and for that kid too, I don't think that kid would've taken it very well if he had seriously injured someone and found out not only had he done that but that someone he hurt had a wife with a terminal illness at home, even the cops thought so too. I think all around a lot of ugliness and collateral damage was avoided for all so for that I'm thankful even tho I'm still reeling inside a bit. I've tried to calm myself with the knowledge beloved is safe but his job is pretty risky all the time. Beloved hauls demolition material and helps demolish and carry away debris for new construction, all together he could be behind the wheel of a load weighing upwards of 120,000lbs if he's got the truck wih the overweight permit. Winters while good for my hot flashes, they keep my on edge when beloved is out working in ice and snow and driving a vehicle that big in it. I told beloved if he scares me like that again I'll haunt him until the day he dies!
RK - I hear you. Its tiring. MO said we'd set up scans after Oct 7th appt, blood and Zometa. I had to talk myself into last set and I'm trying to get out of scans again. "Can't I do all this without the scans?" "what's the point in further scaring myself". Lately I've been listening to the song "Little bird" by Annie Lennox.
"I walk along the city streets
So dark with rage and fear
And I...
I wish that I could be that bird
And fly away from here
I wish I had the wings to fly away from here
But my my I feel so low
My my where do I go?
My my what do I know?"It describes how I feel. I wish I could hide from the doctors, hide from needles, hide from tests, hide from knowing....then I get up and press forward.
Cakes brought up something about friends without cancer and relating to them etc. Aside from a lot of people bee bopping out of my life when the C word cropped up. Most of the rest did after Stage IV diagnosis or I myself had to cut ties. Mostly because 1, they kept asking me morbid questions i wasn't comfortable talking to someone who isn't Stage IV about. Ya'll understand. They didn't understand what I was going through and I kept having to repeat myself or explain things over and over like they weren't paying attention, endless repetition with multiple people wanting updates is mentally very tiring just so they can say "I'm praying for you or "I'm thinking of you" when I know honestly they probably aren't. Like I can say, "I'm in funkytown" and you all understand, I don't have to explain it. Like Cakes mentioned I too find it difficult talking about my DX outside people with cancer. If someone was to ask how I was doing most times I'm trying not to cry while saying "Hanging in there" or I'll fire off a humor box reply to get a smile so they will go away. I hide in humor a lot but sometimes I can't. I wish I had a Harry Potter invisibility cloak sometimes. I really do.
Candy, sounds like on paper 'Lindy' is being kinder to the body but nausea still isn't going away. I'm thinking its time for a group brainstorm session to help keep this dance partner easier to tolerate. We gotta think of some out of the box stuff to help with Candy's nausea. Ideas? My only thought outside ginger ale/ginger candies is maybe having to take Zofran is making constipation worse? I only mention because I get really nauseous when Ibrance plugs things up and it gets better when I'm 'free'. Russell Stover sugar free peanut butter cups or Sugar free gummie bears work as well as Coffee fr me. If all else fails a nurse gave me a recipe for a "brown cow" which is the normal dosage of Milk of Magnesia with warm prune juice, its guaranteed to pull the Ivory Tower out of the earth.
Ann, how you managed to get breast and ovarian being BRCA- is a head scratcher. Overachiever?
I think the idea of integrating natural with traditional/conventional treatment isn't a bad idea, I wish more places did it and I wish insurance helped cover it. I went 5 months from Stage IV diagnosis with only Zometa and Lupron until I could get my ovaries out. I couldn't take an AI or Ibrance until my ovaries were shut down and they didn't want to chemically shutdown and it took a long time to get through initial tests, consultations, and get appts with a surgeon. My cancer did grow during this time, BUT Ibrance was able to start holding things back not long after I started taking it. 4 to 5 months after starting is a pretty good timeframe to know if the Ibrance is working. So don't worry if you see growth being on just the AI for awhile, your first scan may or may not show a little growth, it can be knocked back again - no worries . Let us know how your first Chinese medicine session goes! (Curious!)KBL - are you feeling a bit better lately?
Spookie - My goodness about your DH. You have counter surfers too eh? Are they klepto's too? Both of my felines are. I find random gifts buried in my bed sometimes. A toy mouse, a straw, a bobby pin, a penny, a seashell. Turn over in bed and feel a lump under me because one of the cats managed to tuck the gift UNDER the fitted sheet. How does she FIND this stuff I don't know, wonder of wonder's - mystery of mysteries.
Snowdrop - whoa! I guessed right! I'm so glad you did catch it in time, I know that stuff can cause sepsis. I'm glad the hot doc has you on the road to recovery
Aprilgirl - still celebrating your 'unremarkable' scan
I kinda feel like the cowardly lion from wizard of oz having to be lifted up by everyone with his legs kicking as he cried he didn't want to go into the spooky forest. I feel this way currently about scans. Once its over its ok, but marching toward them is kinda like walking that long green tunnel toward that bald guy with the really big intellectual forehead, flames and smoke curling all over the place in the wizard of Oz. You kinda want to run outta there like the cowardly lion did.The past few nights I've just laid there in bed and cried and said "I'm scared" over and over. Starting cycle 23 @100mg in a few days.
I read a recent survey Metup UK ( Metastatic breast cancer patient led group like Metavivor - they have just regular Metup site for US too ) they recently did regarding Social Media etc, thoughts?
https://metupuk.org.uk/metupuk-mental-health-social-media-survey/
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Rabbit- I love your posts. Your use of words. You are a born writer. I keep my bowels moving. Me and prune juice. So the nausea is not the effects of being plugged up. And I have only taken Zofran once thru all this. I take my morning Lynparza with my breakfast and couple of hours later- bam, here comes the nausea. The increased saliva. The stomach rolls. Then I notice it wanes some by the evening dose and I think "I don't want to take my evening dose" but I do. It is definitely the Lynparza causing the nausea. My MO suggested I take the Zofran early, before the nausea really kicks in too bad. But with that thought I would take Zofran twice a day, every day. I worry I would have to have dynamite to get my bowels moving after that.
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Rabbit - Oh how I wish that I could be that bird and fly away from here. I saw my RO today and I felt rather ungrateful. My pelvic pain is GONE and that’s a wonderful thing and yet I’m so down because I feel so rotten from the radiation side effects. Yep, I want to fly away from here. I’ve completed 9 of 15 treatments. With radiation you can’t say “woohoo, I’m over half done” because the second half is the rough stuff. The techs just looked at me yesterday and knew something was wrong. When I told them how I was feeling, they just said “it’s not going to get better until this is all over”. I already knew that but when I heard what she said I just thought “oh crap. I was right. Why did I have to be right? Couldn’t someone just walk out with a magic wand and make this all go away?”
I read the Metup report. Honestly, without a social media way of communicating to other MBC sisters, I’d be in a world of hurt. I joined this forum when I was at a very low point. I was living in a small town without access to support groups. My husband was doing his best but he knew I needed more. He even said to look into groups in Madison and he would drive me the 3 hour round trip.Joining this group marked a clear turn around in my mental health. And you all played a part in that. Thank you.
And my hubby? He hasn’t said much lately but I know he is doing what he can to cheer me up. He knows that marking tasks off the “honey do” list makes me happy so he is painting my bathroom. And I heard him on the phone with the generator installer earlier. Somehow we got lost in the queue and he pleaded with him to at least get the propane tank buried ASAP so that his wife with cancer can get her new landscaping installed. He said he wants me to be able to look out and see my garden. ❤️
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Rabbit, I’m really glad your beloved is doing okay. I’m sure it scared the crap out of him too. It’s amazing how life can change in the blink of an eye. I’m sorry you’re down. It seems a lot of us have been feeling that way lately. I had a rough few weeks where I’ve cried more than normal. I am feeling a bit better. There is so much going on right now.
I got my first Faslodex shots yesterday, so I’m a bit sore today. I’ve been waiting for over a week for Xeloda to be approved. I decided to switch to a PPO instead of HMO for Medicare because my husband is not going back to work. It’s a lot of change, and it’s mentally draining, but as you say, we all can relate.
I am thinking of you and appreciate you so much for thinking of me. I would love it if some here would join the Monday Zoom meetup. It’s really so nice to put names to faces.
Candy, I have been dealing with the nausea again from my cancer, so I can totally empathize with you. I’m nervous to start Xeloda because it may make it worse. I hope it slows down for you soon.
RK2020, I am thinking of you as well. Im sorry for what you’re going through too. I was in the Zoom call yesterday and mentioned you because someone was moving down to south Florida, and I told her you started with a new place down there. Her name is Maureen.
Hugs to all.
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KBL - Tell Maureen that she can reach out to me anytime and I would be happy to share my experiences with facilities and doctors.
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I hope she comes back next week. I didn’t get her user name. Thank you.
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I couldn’t deal with the zofran, so MO rx compazine. Whee! No nausea, no poop problem. pywacket, my counter surfer, sits on the counter and watches the Keurig make my coffee. When it’s done, he jumps off.
Had an MRI last week. The good news is the rotator cuff tear doesn’t need surgery. The shoulder is full of arthritis. The bad news, it showed a spot. Ortho wouldn’t/couldn’t say if it’s old or new. I’m thinking new, as nothing lit up on my last ct. Trying to get bone scan scheduled.
Spookie had a dental today, had a tooth pulled. I have to go Thursday to get one under a bridge pulled.
Does it ever stop
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Oh my friends, I am reading everyone's posts and taking deep breaths, thankful that you all are willing to share the real stuff, and that I don't have to pretend to be FINE here. Dear Rabbit, I'm scared, too. I'm scared of more pain and less independence, of feeling less okay and more like crap, scared of new treatments and scared I won't be able to have some of those treatments. I try not to think about it. Lol. The fear can wake me up and then I lie in bed thinking I should get myself to a marijuana dispensary soon. But shouldn't I "save" marijuana for when things get really bad? And just how bad are things going to get... I know it's not helpful to think these things, but these thoughts sit and wait for me, like hooligans smoking cigarettes behind the bleachers, and I invariably end up hanging out with them for a while. (Good word, hooligans.)
RK, ooh, I wish someone would wave a wand, too. And take at least my fears away (and also make your landscaping happen!) KBL, how I wish I could join the Zoom meeting, but rats, I'm still working and can't possibly step away at 11AM on a Monday. I would love to see all of you. I've only been a part of this community since January, but I feel similarly that I couldn't have made it this far without your advice, suggestions, recommendations, musings, jokes, celebrations.
My DH sleeps more and more these days. I pray that he will slip away peacefully in his sleep, and that I won't get too sick to be able to take care of him. Being able to work from home has been a serious blessing, I couldn't do all of this otherwise.
It's 8PM, need to go take my meds. Please work, meds. Please respond to the meds, body. I mean, come on!
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SF-Cakes, I’m so sorry you can’t join. I totally can relate to everything about the fear with this disease. It especially rears its ugly head when we aren’t feeling well, and I’ve had a few weeks of that lately. The tears have come and gone. I’m so appreciative of this forum
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RK2020 - take care of yourself during and after radiation, it does take a toll. Make sure they tell you how to care for yourself, rest, hydration, calundula for the skin (my radiation Onc recommended). I used oil, maybe a cream would have been better. I tried to take daily naps, and still to try to get a few in each week. Fatigue was real and I continued to feel it post. Hugs
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I've contemplated even posting this because I feel like it's too much and too depressing and I like when everyone here is bringing each other up and I don't want to bring anyone down. I'm not even sure this is the right thread for this....
Good afternoon everyone. I totally understand the funkytown.... I know I'm new to this diagnosis and forum but reading all of y'alls posts lets me know that there are people who understand what I am going through. This past week has been a rollercoaster, mostly on the down turn. And I don't feel like there's anyone I can talk to about this because 1) they wouldn't understand and would just want to fix something they can't, and 2) I feel like I am burdening people. I have a therapist I've been seeing even before the dx and she's nice but I feel like this is over her head. My husband is my rock for treatment but he's not good with the emotional part of this. I'm really having an existential crisis with all of this and how my life is now. I can't seem to wrap my head around being in treatment for life. I've had fatigue since chemo in 2017 but it's getting worse and my endurance for exercise has tanked. Every day actions have started to hurt/become uncomfortable with my increased rib pain. I don't want my dx or prognosis to get worse but I don't know how I'm going to get through the rest of my life like this. I know logically that treatment takes time to work but I can't seem to get my brain and emotions to understand that. I'm just a wreck.... I've spent several days this week sitting at my desk at work trying not to cry. I'm not sure if I've said it here, but I'm active duty military so it really doesn't look good if I'm always crying. Is there a point where this will stop being so raw and I can deal with it better? Because I'm not making it so far.... Sorry if this is all over the place.
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Katy, i cried reading your post. Don't worry that I did. I only did because I totally understand how and what your feeling. This is a safe zone to talk about this stuff. Who else will listen, who else can we talk to, who else will get it? I will honestly say it took me about 7-8 months to emotionally come down a hair out of the rafters enough to take a deep breath and enough to get more than an hr or 2 of sleep even with ambien on board to try to help me slumber. Everyone is different, but that's how long it took me. It was hard, not going to lie. I would randomly scream at night early on in panic like fits. I kept saying to myself how am I going to emotionally deal with all this, I'm scared outta my wits at the prospect of feeling/knowing things will get worse. I mean...letting it sink in subconsciously that I have Stage IV freaking cancer, not Stage 0 or 1 or 2 or 3 but 4....there is no 5. It freaked me out. And after getting through rough chemo like I did only to arrive so quick here like me your probably thinking - "Well, that all sure didn't help"... "This is all just 'temporary' right, like you all said?" ""Ya'll frickin lied to me, you gave me hope!" - that's what I thought. I still wrestle with those thoughts.
Now, having said that. What helped me truly was talking with other Stage IV ladies. It felt like everyone in the medical community was ready to pump me full of stuff, but they didn't care much for the most part what it was emotionally doing to me. That's where other Stage IV ladies come in. When I'm sick of the month to month BS I can come here and say "I feel like shit" and not be judged or be urged to 'seek professional help' - sure services are available and people should use them if they want/need them. But I needed someone in my shoes to understand the *pardon my french ladies - no other way to say* the mindfuck I was going through. These ladies get it. We get it Katy. It sucks to realize our lives are totally upended. There isn't any 'temporary normal' with this stuff. Your about a month into this, your still in shock, we will help you work through this stuff. You may see me josh around alot here, lighten the mood sometimes, even bring out the morbid humor now and again, its not that things are really any easier for me, I've just gotten alot of practice under my belt with this stuff over ALOT of trial and error. I've learned not to 'let go' per say, its more like 'co-exist' or recalibrate myself as needed, its not fun, not easy, don't like it, BUT it helps me not go crazy and it helps me enjoy some things in life again.
I promise your not making anyone depressed or feel down expressing how you feel, you are helping people and validating feelings so many of us have and that so many have that read but don't post. I don't want to say 'chin up' and be dismissive of your feelings, BUT at the same time I do want to say 'chin up' and say your not alone and it will feel a bit different as time goes on once you kinda get a feel for things; a routine, how the medication will treat you etc.
*Big Hugs*
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SF-cakes - I can’t even imagine what you are going through with your DH. I’m lacking words of comfort but know that I’m praying for strength and peace and some rays of sunshine to help you navigate these rough waters
Katyblu - there is nothing wrong with finding a new therapist Do what’s right for you!
Sooooooo, I think it’s time for a group hug! Come on…Katy, Rabbit, Cakes, KBL, Candy and anyone else who needs a little comfort, gather in a virtual circle and give a big squeeze. But careful now, we don’t need any broken bones. 😂 Things are better when we’re in it together. ❤️
And now that that’s over, I’m going to tell those cigarette smoking hooligans (who doesn’t like that word?) to buzz off! Then I’m going to start up my Spotify playlist titled “Regina’s Happy Tunes”. I’m gonna claw my way back to the land of the living. But I’m tired so no dancing today…just music. Baby steps.0 -
Wanted to put this separate from my post to Katy.
One of my plethora of areas of mets is in the greater trochanter part of my femur on the left side (the part that is near the ball that goes into your hip socket) sometimes bothers me enough to favor the other leg a bit in walking even tho the other leg really isn't any better mets wise speaking. Its silly but I worry I'll be walking around somewhere when beloved isn't around and end up like Mustafa from Austin Powers. RK reminded me of this thought I had with her 'not too tight' group hug - made me laugh
Last scan they said the brightness on the bone scan in that area went below an Independence Day movie scene change flash so not sure why its not behaving like it should. Ah well, adjustments, adjustments.I do want to report, with beloveds help I managed to mow our little back yard and side yard myself. Beloved did front yard. Grass growing season is coming to a close and I wanted to mow at least one more time. I haven't mowed but maybe twice all spring/summer.... I did it because I worry, what if I'll never be able to do this again? It was really hard but I did it. Ah, manicured freshly mowed grass, its such a satisfaction to see it looking all pretty instead of the amazon.
Cakes, you might get a kick outta this comedy clip on trying Marijuana for the first time.
for part 2 type in "Bill Engvall the rest of the marijuana story'
Watched both parts before I partaked in MM (Medical Marijuana) tinctures. I found it cost prohibitive (60 bucks per bottle, each lasts a month, and I was doing 1 tincture for pain and 1 for calming effect so thats 120 bucks a month) MM discount only knocked off 20 bucks so that was still 100 a month for both. Couldn't experiment to see if other types would work for me and vape pens with only 10 hits where about 55 a pop. I had all kinda thoughts racing while I was trying to see if it would work for me. What if I smell like weed going to church??! What if I showed up and was like "Well Goo Goo Ga Joob everyone!" LOL. I discussed this all with the pastor and the elders and my fellow congregants and they had no issue at all, Pastor himself even offered to pay for it entirely for an entire year if it helped me at all. Many have found relief with it tho. I'm saving pain meds until i'm ready to stop treatment - i just live with it for now, won't have to fight for them then. I want to see Lucy in the sky with diamonds, that is how strong-th I want the drugs-th to be -ith. "Hark!".You carry a lot Cakes, I'm glad circumstances make it easier to be able to work and care for DH. I admire very much how you 'balance' everything.
Added to add:
RK - I'm thinking of you during rads. I let out a good long sigh reading how you were struggling with rads. I really wish magic wands were a thing, they sure would be a very kind gesture. I'm stomping my foot and clapping saying "You can, You can, Do this! *t o the tune of "We will Rock You"
KBL, Aprilgirl et all...hugs, thinking of all you.
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Rabbit, thank you! I cried reading your reply because finally, people who can understand and validate my feelings. Thank you for sharing with me. I too try to use humor, both light and dark, to get through this. I am definitely still in shock. I know it’ll take time to “coexist” as you say, with this dx. And it helps immensely that you ladies are here to help. I think I just need to do super baby steps right now and take it day-by-day or in even shorter increments. I know (or at least really hope) that I’ll get to a better mindset in the future but looking long term isn’t going to help now. Thank you again! And I loved the Austin Powers scene! Hopefully none of us end up there 😂
RK, thanks for the hugs. It really helps to feel apart of the group!
Ladies, I hope that you’re all having a better day than me! Thank you for being here
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Keeping the theme of wands and invisibility cloaks, group hugs... ♥
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KBL - happy to hear you started faslodex but it's nice ok that you're waiting for Xeloda approval .
Candy , hope the zofran x 2 / day is working and you feel better .RK2020 - we feel you on flying away. 1/2 way through rads is good but it's awful when you feel terrible and have to continue on . Love that your hubby is painting the bathroom and leaning on the landscaper on your behalf . I often think this is harder on spouses than the patient but idk.
SF-Cakes - we are here for you and we can all relate to the fear and restless sleeping . Add in your husband's dx and I'm smoking behind the bleachers with you , it's just not ok to have two stage IV dx at the same time for a couple. I have a friend in SF that is well versed on medical marijuana and the various edibles that will help you relax / not get you high if you'd like some info about sf dispensaries. I'm also scared of the when and what's next - trying to focus on life a week at a time but it's a lot to carry on us all.
Katyblu - I wish I could hug you and assure you that it gets better. It does. Weirdly , the oncologist appts and monthly shots become somewhat routine . Quarterly scans are routine but create a weird anxiety. However , I was literally crippled with fear and emotions in the first few months and terrified that treatment wouldn't work . I literally sat in my dark bedroom for hours at night watching The Office . I broke my wrist 3 days after starting Ibrance so that just added to my misery. I also work and the cancer gave me a very bad case of laryngitis (nodes pressing on my laryngeal nerve) which made me self conscious. Covid and the shutdowns (Washington state shut down pretty early ) helped me take some time off, work from home and catch my breath. Thankfully my enlarged nodes started shrinking and my voice came back within a few months. I'd say it took me 3 months to feel less like I was losing my mind and crying all the time.
RRabbit - I love you, girl . I love how you write and keep us laughing even on hard days. The only thing that has helped me is having this thread specifically to guide me in the beginning when my legs were literally shaking from fear. My large cancer ctr offered a counselor so I had an appt early on (zoom due to covid). Nice lady but I could tell she couldn't really relate . I have some serious questions about how to handle retirement money, how long should I work , WTF can I expect for how long the meds will work and she can't help me with any of that . Even when a few of us are in funky town , you lift me up because I know I am understood and I know you all care. Add me in to the group hug . I'd be lost without all of you.
I'm trying to post a funny video but darn it , can't seem to make it happen
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SF-Cakes, I’m so sorry about your husband. This thread is so fast-moving, I apologize for not saying anything on my last post.
Katyblu, I hear you. I am not as eloquent as other ladies, but one of the things I’ve always felt is if I feel like shit, I let myself feel all the feelings. I don’t try to push them away. I let myself feel them. I know you may not be ready, but when you think you are, please think about joining us on the Zoom call on Mondays at 2:00 Eastern. We are all there for each other and even have some good ideas for each other that we share.
I am all for a group hug. Thank you for inviting me, RK2020. Count me in.
Rabbit, I actually laughed at that skit. I haven’t actually smoked any MM, but I’ve tried a few edibles and a tincture of CBD during the day. Sometimes it works for sleep and other times not so much. I am not fond of the MM head feeling, but I’ll take some if I’m going right to sleep. And hugs right back atcha.
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What Rabbit said👍👍👍
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Katyblu in for the group hug 🫂 too!
After this shocking MBC diagnosis anyone would be floored, crying and trying to stop the room from spinning with spaghetti legs. Try everything, new therapist group whatever gets you through. I think it took me almost a year to stop feeling hotness well up and chest to heave. It wasn’t constant but came over and over again each time a bit further apart.
Tany
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Thank you ladies, hearing your experiences makes me feel “normal”. It’s so refreshing to talk to people who get it. Thank you for picking me up when I was down! Massive group hug (soft one!) to everyone
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Katyblu - sorry you are going through this. Everyone's experience is different, but I think we would all agree that it sucks and is not a journey we volunteered for.
Rabbit - your humor will help all of us get through this. Engvall's comedy on his first trip to a dispensary hit the nail on the head. I had the deer in the headlights look the first time, things have sure changed since I was a teenager and bought it in a baggie. Illegal in my state, I even took a different out of the way route home the first time, in case anyone was watching.
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Hello and hugs to everyone. I only have a moment due to a work deadline, but I too was in funkytown much of this week. As always, you help me. And I send prayers and love to you all.
Katyblu, Rabbit always shares much wisdom. I was diagnosed Stage IV in July, so I'm new to this game too. One thing that I've found very helpful are breathing exercises and guided meditation every day. I use the Calm app but there are others. Even 5 minutes of focusing on my breath can provide a break in the anxious and fearful thoughts I have. In essence, I acknowledge the emotions and then let them float away as my mind focuses on just breathing and just that moment. You should be able to do this at work, if you can grab a few moments. And when PatGMcRee chimes in, she'll say to find humor, which you note yourself. I try to listen to standup comedy at sometime each day, and usually something will make me laugh out loud, which helps.
Re MM, it's illegal in my state, but I've found a good CBD product. It can help smooth me out when I get in an anxiety/fear/overwhelmed rut -- fabcbd.com
Ann
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One day when we are all sitting around enjoying a virtual bottle of wine, I just may get tipsy enough to share my marijuana escapes of 2019. Mind you this was about a year BEFORE my MBC dx so…it wasn’t exactly medical marijuana. Queue the music Mr Frankie Valli…Oh what a night 🎶
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I can't wait to hear The Marijuana Escapades, RK! I stopped drinking alcohol when I was first diagnosed with breast cancer, to help prevent recurrence... hahaha. I'm thinking a glass of wine every now and again is probably not going to change the course of my disease. Let's all kick back in comfy outdoor chairs, with cozy blankets, at night around a fire and regale each other with stories. I can hear the laughter already!
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Sign me up for the bonfire and Marijuana Escapades! We just lifted our burn ban where I live so we can resume backyard bonfires. I will host!
I love fall, these sunny but crisp and cool mornings. I drink wine and beer I drink wine or beer occasionally and this would be a good event to share some wine. I don't love Pinktober, but know it is around the corner! I start baking pumpkin treats in October and am starting early. My friend's son with Hodgkin Lymphoma loves my pumpkin roll. He just completed his 3rd round of chemo so I will bring him a pumpkin roll to cheer him up and also entice him to eat.
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How fun does THAT sound?? How about if I bring a big pot of chili? 🍁🍺🍷🥣 🔥 🎃 🍂 I can close my eyes and feel the warmth of the fire and I hear laughter. ❤️
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2019whatayear posted on another topic this link: https://www.sciencedirect.com/science/article/pii/S2059702921001927 . I thought we had discussed the PPI/Ibrance issue a year or so ago and we had been told that it was safe to use together and there were articles actually saying that PPIs could actually be beneficial for breast cancer patients. I thought I would bring this up on this thread as I recall that there are quite a few of us taking omeprazole while on Ibrance. I thought that one of the things the pill form of Ibrance was supposed to do was be more compatible to take when we took our Ibrance. Has anyone heard anything from their MOs about if we should be discontinuing PPIs while on Ibrance? I realize the study was not that large.
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Cakes - I guess with the invisibility cloaks plus the presence of some particular SE's - I guess we all belong to Hufflepuff - emphasis on the Puff.
The monotony of appointments kinda feels like the older more seasoned Lorraine from Back to the Future gazing across the table at what her life has become except for us its like "It was then, I knew I was going to spend the rest of my life dealing with this shit". I'm really not looking forward to Zometa on the 7th of October, because its time to schedule scans after that. Feel worn out. SOB as usual, fatigue, OF COURSE Gas, its a wonder to get through the day (or the night) sometimes but I do. I'd like a cancer vacation. I'm tired.
I want to second what Anntop said about the breathing. Recommend this. There is something called Bio-feedback that some psychiatrists (?) use which in essence gets you to line up your heart and breathing rhythm and it can retrain you when anxiety or panic attacks come. I've been doing something deep breath related that I had semi invented based off what a nurse friend had said to me once. It was out of necessity because during the height of the pandemic when stores were limiting people in buildings etc I was having trouble getting refills for Ambien and Ativan, either the line to get in the building was too long and the pharmacy would be closed by the time I was in there or there just flat was a shortage of the medications because of everyone vying for them. I said to myself I gotta think of an alternative, going cold turkey would be bad if I couldn't get them. So slowly over 2 months during a pandemic no less I detoxed/weaned off slowly and switched gears and was successful amazingly. It was difficult weaning off tho, I had been on both a yr.
My nurse friend had told me adrenaline rushes take time for the adrenaline to work its way outta circulating in the body- time to do that is about 15 mins. These rushes kinda a feel like someone is trying to jump start you with a pair electrical jumper cables, its freaky and scary and they would come out of nowhere. So I trained myself to deep breath and kinda repeat to myself over and over "It's just a feeling, it will go away". Because they would. It took some doing. BUT this technique took me off all anti-anxiety and sleeping pills. I haven't taken anything related to either for 2 months shy of a yr now. So highly recommend breathing technique as suggested by Anntop or similar.
Living babystep by babystep is ok, more than ok. It's necessary. No pace is wrong. Marathon not a sprint. Its the goal to graduate in dealing with all this like Pat has with optimism. I confess not there yet.
I don't honestly know where the writing part of me came from. I was a poet before cancer, not a writer. People said I had a way of speaking/way with words even in middle school. It's kinda weird cancer brought this outta me, however if it helps people or photo bombs scans, then I'm all for it
Supercalifragilisticexpialidocious! With writing things down I can take as long as I need to get on paper what i'm trying to say. Tit for tat back and forth conversations are harder for me, not as quick on the draw most times. Anybody else having I dunno how else to say, cognitive problems in that regard? Its like a literal cloud sometimes when i'm talking to someone, I fear becoming a veggie, know what i mean?
Count me in for a campfire with chili, perhaps some hard cider, s'mores and some of April's pumpkin roll, some good laughter and stories, sounds like a good time to me
But with the combo of Chili and Ibrance, I suggest we sit a little further back from the flame Candy, hope 'Lindy' is being kinder to you and the nausea is going away or perhaps a dose reduction is in the works. I'm really hoping this next line is your next long run, just hope we can get the nausea under control.
Katy, hoping first cycle is still going well
RK- hoping Rads is almost done for you. "You can, You can, do this!!" Clap Clap Stomp
Cowgal - I think further back in this thread they talked about that, I remember that discussion here very vaguely, think Jaycee and others were talking about that, I'll try to find it for you, might take a bit, I think conversation was a yr or more ago so will take some digging
. Aprilgirl - i have the same issue regarding therapists/counselors. Most of my questions ended up being answered with "That's a question you should ask your doctor" or "You should speak to a nurse navigator about that", nice lady as well, just can't help me. That's where you all come in. I do know that Stage 4 qualifies one for a very much sped up process claim for disability and then can qualify for medicare (forget timeline), if you have life insurance on yourself stage 4 diagnosis may allow you to cash out some early, etc. Just what I sorta remember off hand. Its tough to have to think about stuff like this, managing the affairs as it were. Sucks. You ladies, all of you, and you girl make getting up in the morning a little easier. I too would be lost without you all.
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RhosgobelRabbit - I did look back on the old posts that were made about the topic of PPIs and Ibrance. I found this article today and it looks like more than just Ibrance is on the list, including Faslodex: https://www.researchgate.net/publication/349013672_Proton_Pump_Inhibitors_and_Oncologic_Treatment_Efficacy_A_Practical_Review_of_the_Literature_for_Oncologists . I wonder if there is a suitable alternative for PPIs that doesn't cause problems with the drugs we have to take.
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