Ibrance (Palbociclib)
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Yeah but PatMcG I cheat...I've always been skinny so don't take it as a big deal on my part. They're just skinnier than they used to be. You made me laugh with the sign you want written!! Probably better to be done sooner rather than later hahaha in case he gets shaky hands and writes 18 instead of 8.
Ceci love, try to stick around even when you're feeling yuk. I know it's hard but it's harder when you feel alone. You start listening to those little voices in your head that tell you stuff that isn't good for you to hear. I saw a meme on Facebook that went something like "Don't believe what your mind tells you when you're sad and lonely". I can't get out to socialise which is why I come here nearly every day because there's always someone who says something that inspires me or urges me on or just makes me laugh. Don't be afraid to ask your doc for help, as much help as you need. We don't have to be heroes about this, which is what my MO tells me about pain. I tend to say, "I'll be ok, I have a high pain threshold" and he says, "That's not the point. You don't have to be a hero and take it as a challenge". We are your friends and we are here for you. Don't be alone.
It's Sunday in Australia so I hope you all have what you could call a good week and receive good results anyone who will be up for them.
Hugs
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Lynne, I may have already said this: We were in Wolfeboro NH for the last two weeks in September this year, on Lake Wentworth. Glorious!! What a beautiful spot!
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Jaycee, in response to your post, I have been taking Lyrica 75 mg. since I started this drug combo 10 months ago. My nerve pain (rather severe) is limited to my hands. I take one pill several hours before bed and it has resolved the problem. I still have the joint stiffness, in both hands, continuously and unfortunately my MO has not been able to suggest anything to resolve that issue. Hopefully, this info will help.
Hope everyone is having a good weekend!
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Thank you so much, Marsh. I am leaning toward Lyrica because of side effects of the others. Of course, I'm going to see the NP at my neuro's on Wed, so the sx have gotten better. I still have them pretty bad sometimes so I need to try something. The colder weather is making them worse, too.
The Pet/CT is Tues, so I looked at the prep from my hospital. They are now mentioning no caffeine and no exercise but nothing about low carbs. They used to just say fasting. I looked at a few websites from other hospitals and they all say different things. Hard to know what to think. Do they not know?
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Good morning...
Janet...Will be with you on Tuesday for your scans. And, will look forward to hearing good results soon thereafter.
Starting Round 5 of Ibrance 125/Letrozole today. Does anyone feel worse on their "off" week? I swear I seem to have more aches and pains on that week.
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Hope, I think that a lot of people feel more tired during their week off. Odd.
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Nona, I feel the same on my weeks off. Thanks for the good thoughts on my scan. I just finished cycle 19 so scanxiety is ramped up some.
Pat, I showed my friend your work and she thought it only fair that I show you hers. Her Facebook posting of the work is here:
https://www.facebook.com/Elis-Opus-107657105932689/
The photos section shows the variety of her talent. This woman is has been a huge inspiration to me for twenty years. She and her DH adopted five special needs children and she has MS. She also has this amazing artistic talent. All bundled into one deeply spiritual person. Beautiful through and through.
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I'm on my vacation week from Ibrance. Start again tomorrow. Because of low counts I had 3 days of neuprogen. It's only my first round.
Last night I had to take a Tramadol the bone pain was really bad. Even my teeth hurt. 8 out of 10. It took the edge off. I really don't want to take anything other than Advil/Aleve until I can't deal with pain and I guess last night was the night. Oh I've been taking Claritin. When I took the pill it helped so that my muscles sort of relaxed. Quite honestly if I had a Valium in the house I could have used that. I suddenly was terrified I wouldn't be able to deal with pain in the future.
I was at the hospital for my shot yesterday and ran into my MO. She told me she ordered a PET for next week. It was supposed to be in Dec. i have scanxiety .. I thought I had a handle on my feelings but Wow it's like the first day after diagnosis.
I can't explain this to my DH because he worries anyway. So I come here to tell my crazy thought. Am I afraid of becoming addicted? Not really I'm afraid nothing will work when I really need it down the road.
Maire.
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Janet, your friend's dogs are AMAZING! Such expression in their eyes!!
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Maire67- did you talk to your doctor about lowering your dose of ibrance. Many of us had to do that due to low neutrophils. I take 100 mg and still need 2 weeks in between to recover my neutrophils. Some people are on 75 mg. I would get some Ativan ( most docs don’t like Valium anymore) in case you need it. Taking it on and off during high stress will not addict you- if you take it too often you will need a higher dose for it to work- and that would be a clue to back off. You should not suffer this way.
Ask your MO why she is doing a scan so quickly. I hope you feel better today
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Joyner, don't get me started talking about Eli. You'll never shut me up. The dog drawings are all commissioned by owners who know what she can do with pen and ink, some after they have lost their pets. (They send her photos.) She puts the love for their owners in their eyes. I love when she does a series, showing the work in progress. I told you not to get me started.
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Jaycee, she is truly gifted! Her dog drawings immediately brought me to tears! I have been missing my Dixie so much lately. I'm thinking I really need one of those big bags to take to the beach! Thanks for sharing!
Marie, Jaycee and I have been on 75mg Ibrance due to side effects. The Neulasta shots for white count can cause extreme bone pain! There are2 options. Take a few lower dose injections over a few days, or load up on pain meds and stay ahead of the pain. Once the pain reaches a certain level, i found the only thing that takes care of it is a shot of Demerol. I hope you can get to a better place soon!
Hugs and prayers,
Claudia
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Leapfrog- big article about your city Perth in the SF Chronicle travel section today. It looks beautiful. Here’s a picture of one of the ones in the article.
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Well, I'm 60.
I'm starting to feel some age older than that with all of these scary side effects, aches and pains.
Tanya
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Janet, regarding the prep for CT, I read the different hospital websites too and it made me a bit paranoid about eating carbs so I had eggs for breakfast and turkey on lettuce for lunch and a little vegetable soup. Then the hospital called to remind me of my appointment about 4:00 so I asked them. She said low carbs but not to go overboard. They are mostly concerned with people who may be diabetic and not know it. So, I had some crackers, cheese and a small glass of wine since I had been so good all day. I do think the exercise break is a good idea, oh and I also had a cup of coffee, half decaf, half regular. The last time I had a PET, the technician saw me pull out my phone and told me not to talk too much as it might make the vocal cords light up. I was just going to look at my emails so no problem there.
Good luck with your scans, I had mine on Friday and it's been a long weekend waiting to hear the results. Note to self, don't do it on a Friday again. My MO and the hospital are usually very good about getting back to me so I just have to believe the RO was too busy to read the scans.
Faith (in the future).
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NKB and Claudia. Thank you for the info. I started on 75mg since I have fibrous scar tissue in my bone marrow that causes low white cells. We discovered this on my first round of chemo 12 years ago. Im feeling better now. Just extra tired. Pain is tolerable I should have asked the MO why she is doing the scan early. I can't seem to think quickly on my feet. Chemo muddled brain. Neulasta too strong so getting Zarxio a biosimiliar to Neupogen. I'll as for Ativan my next go around. I just realized I'm starting to leave out verbs as I type with one finger.
I'll have to be careful as I read about Faith's prep PET diet and exercise directions. I forgot about that though exercise this weekend includes getting off the couch. No appetite either though the waistband says otherwise. I hope . Hope you get good results Faith.
Thanks all
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Ceci, I am just finishing my first cycle of ibrance and have also been fighting depression and wanting to isolate, but thanks to this site, and some very persistent friends, I am feeling better and wanting to make the most of my days...give yourself time to process and rest, but don't forget to come back.
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Thanks, Faith. The tech always checks my blood sugar before they inject the stuff even though I am not diabetic. I don't do exercise (don't tell Z) or caffeine anyway so that part is easy. I don't talk on the phone.
I won't get results until I see MO on Nov. 8. I always wait to see him and don't even call. I don't want him to think I am waiting with bated breath to hear his pronouncement. Like when the whole family was in the doctor's office in Breaking Bad waiting for Walt's results. Not doing it. Gives him too much power.
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just saw a psychologist for constant fear and depression. In the end she told me to go to mindshift.com. there are exercises that are supposed to help quiet the mind from constant worry. It didn't help me much but maybe it will help someone here. I guess what I have learned is that I have to let go of everything I had planned for my immediate life and my golden years and just live 6 months at a time. Sometimes I live day to day. Everything has changed and will continue to change I'm sure. I will just do the best I can with what I have.
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I start my 1st Cycle of Ibrance this week.. I've been reading this thread about the side effects and how it is working for others. I handled my chemo SE's very well and hoping that I will handle Ibrance as well. I will also start my monthly injections of Xgenva this week as well.
Like Lissalou I'm battling some fear and worry.. my faith helps and I have to let that go and just walk the journey. Would love to hear from others about how they handle their new reality. In July / August.. I thought this was just a bump in the road that I'd have to get through, then I could get on with my life, until they found the cancer has travelled to the bone.. Now I'm trying to process that this will be the rest of my life battle.
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Odd that we are all getting different pre PET scan instructions. Mine were no exercise for 48 hours, super low carb diet for 24 hours, fasting for 6 hours ( water only) before PET. The day of test my blood sugar was done- nucleated glucose injected and to lie down in a dark room for an hour. No reading, no music, no phone and no hubby allowed.
Lissalou- I think the mind shift of what you thought your life was going to be and decisions you now have to make with your new reality are one of the hardest parts of this. I do think trying to find a therapist who has experience with this could be very helpful as well as exercise, yoga, music ( for me is healing) reading and involvement with others. I do like having friends who know nothing about my having cancer - helps me feel more normal.
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Nkb...thanks a lot. That was really nice of you. The pic is taken at Kings Park. It's a huge tract of natural bushland that was set aside by our first settlers as breathing space once the city grew. It's ginormous but I can't remember exactly how much land it is and it's up high and overlooks the city and our beautiful Swan River. The bridge is a walkway that's been built amongst the treetops. It's THE iconic place that we all take tourists to as you can take in a lot from there. Just me being a tour guide as my alter ego hahaha.
tina marie... don't be afraid of Ibrance. Its bark is worse than its bite. In other words, what you read about it is only the worst case scenario. Most of us take it in our stride. If you handled chemo well, Ibrance will be a breeze, believe me. They say the SE's are like chemo only milder. I actually haven't had to have chemo and I hope I don't but most of us get mouth ulcers, a tiny bit of nausea but only sometimes, hot flushes and fatigue towards the end of the cycle due to our levels going down. I find I need to have a two week break instead of one because my neutrophils drop very low but this is now my ninth cycle and I feel good for about half of the cycle; the rest of it just tired but ok. I was diagnosed de novo with extensive bone mets.
Lissalou and tina marie....I find Mindfulness Meditation helps me a lot. I focus on the here and now, right in this moment, and I don't look at the future. I've worked at accepting that this is my new reality. My husband and son are away in New Zealand on business at the moment and will be travelling to the US in a week's time. I was looking forward to going with them but that's out of the question so instead I look on it as giving me time to have some solitude and do exactly as I want...within reason, as my bone mets and neutropenia don't let me go anywhere. I have some DVDs to catch up on.....girly ones that my guys wouldn't want to see and I'm genuinely learning to accept that this is how my life will be from now until forever. It's no use wishing and dwelling on what we wanted to do. The fact, as hard as it is, is that we can't so we have to make the best of it. I find my joy in the simple things in life. Sitting in the sunshine, having a lovely hot chocolate drink, talking to a loving friend. Facebook can be either a blessing or a curse. I choose to make it a blessing. As I can't go out, I use it to communicate on a very personal level with my dear friends through PMs and I've joined some lovely spiritual groups and have received a lot of love and support from those people. I modify it to be what I want it to be....anything or anyone negative gets deleted and I keep it totally positive. I share a lot of love on there and I get a lot of love back. I've discovered many people are struggling with a heavy load and i've made it my mission to help them. It takes me out of myself.
Frenchhorn....good for you...great attitude, and Ceci...stick with us. We're here for all of you who are fighting with fear and anxiety. There's no judgement, only love.
Faith...good luck with your results and Maire, good luck with your scan and results. Thinking of you both and anyone else I've missed. It's so hard to keep up with everyone because the thread gets so confusing at times so I just think of every one of you every day and send love.
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Something I found in my travels around Facebook that I thought might inspire us
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And I like this one, too....
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Maire...I went to see my oncologist two weeks ago because I'm having what I now know they call pain spikes. He gave me a talking to about pain management because I'm one of those people who likes to think that because I have a high pain threshold I can cope with pain, even when it's 10 out of 10 and at times it is. I'm on a LOT of medication for it and he said he'd like to have me on more but because I'm sensitive to drugs, he has me on the lowest dose he can that helps me to be somewhat mobile. This was his view on it. He said not to be a hero, that the idea is to try to keep the pain level, without those sudden peaks I guess we all get at times (I do so I assume it's usual with bone mets with pressure fractures). I have a 37 mcg Fentanyl patch - he raised it from a 25mcg patch to try to even out the pain. I also take Targin morning and night for the same reason; it's a sustained dose and I take Tramadol PRN, except PRN turns out to be morning when I wake up in agony and mid afternoon when I have a big spike. He's also told me to take a 5mgm Valium as it has a synergistic effect with the other meds. It's a lot, I know, but I don't think there's a concern that if/when the pain worsens the pain meds will no longer work. His belief is that if we keep the pain under as much control as we can now, we won't need a lot more when/if that time comes. If I don't take all these drugs, I can do absolutely nothing but lie in bed with my back supported by pillows and I'm no use to anyone. I have a complete personality change when the pain takes over, from optimistic, bright and breezy to despairing and in tears. I'd rather be the former. This is just my choice you understand, with the guidance of my oncologist, a very kind man who hates to see me in pain.
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Leapfrog, thanks for the reminder about mindfulness and the encouraging words, simple things, laughter, gratitude, today.... I love your take on facebook... keep it positive and do any good you can do....you've made me smile this morning...
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Wow Leapfrog what wonderful posts and thank you for your take on pain meds. I will definitely have a discussion with my MO. The beauty of this site is that you can reach across the oceans and touch so many of us. Time to rethink my moment and really live. This was a very dark week for me due to some terrible issues with one of my children. I thought I couldn't continue to deal with those issues. But a new day and your words give me hope that I can with the help of others like you and all those on this journey . Maire
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Hi All,
Leapfrog take whatever medication allows you to be the way you need to be. Pain is raw and pounding.
I try to stay busy to keep my anxiety/sadness at bay. It works until night comes. Then I lay awake trembling in fear at what is and what it may become and when.
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Good afternoon...
Leapfrog....I can't even imagine the amount of pain you are in 24/7. You are a real trooper. Your attitude is absolutely marvelous. My daily aches and pains are no comparison to what you are going through. When I complain and then read what others, like yourself, are going through...it's time for my attitude adjustment. I agree, take whatever you need to get you through the agony. Your MO sounds like a gem.
Hope
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I love all of you and it fills my heart to see everyone reaching out to each other. I will write more later but wanted you to see this update about immunotherapy for MBC. My friend, Christie, who is a 10 year survivor of malignant melanoma took Yervoy when her tumors recurred and grew so large she could feel them. After the Yervoy she has had 5 years with no evidence of disease! She's in graduate school now getting a Divinity degree!
My oncologist tells me there will be more and more cancers treated with Keytruda and Yervoy. He's already amazed at the number of his patients they have helped. These are drugs that are on the market, just being tested for different primaries.
http://www.sb.marketwatch.com/story/fda-approves-t.../accounts-mw
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