Ibrance (Palbociclib)
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Sorry Jaylea. It is so hard to keep losing parts of ourselves.
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My wife tried CBD oil and edibles. She started out with a prescription oil and that simply got her high. She then tried various edibles and cannabis oil sleep mixtures and unfortunately for her, they only got her high and didn't help her sleep. Good to hear it works for some, but she gave up trying after about 4 different mixtures and varying dosages.
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Jaylea, that is a discouraging report from the doctor. I hope they will investigate further so you'll know.
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There are lesions on my liver. They where there from the beginning. They have not increased in size, but in amount. The oncologists say it is not possible to do biopsy because of how they are located. I am on Ai and Ibrance and will do regulary scans. I still hope the lesions are not mets, but ...
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jaylea sending you a giant hug. This damn disease has so many random ways it can infiltrate our lives. I'm sorry about your vocal cord damage
do you think that you may be able to seek a second opinion on the matter? Maybe see a voice specialist or someone like that? I wonder if there is any room recovery from something like this?
Anna 33 - I wish I could say more with regard to lesions on liver. There is a liver mets thread that you may wanna check in on about it. There appears to be people who do well on Ibrance and have liver mets. Just know that Ibrance takes a while to kick in...I didn’t know for sure that the tumors were shrinking until about maybe 9 months not into treatment.
With regards to CBD - I just got my MM card in the state of PA and my MO palliative care specialist made some suggestions regarding what to take. Then I went to the MM dispensary and had a consultation with the pharmacist who I (and my parents) really liked. He made some recommendations for me that were fantastic and I’m SO glad I consulted with him instead of experimenting on my own. I have been prescribed a 2:1 CBD to THC vape cartridge for the daytime (because apparently CBD is stimulating and will worsen insomnia (I did not know this!). I only vape the teeniest amount. The first day I took too much in and did feel a buzz (which I don’t love). The other prescription is an 8:1 THC to CBD nighttime tincture where I take a very small small dose (like 4 drops!) before bed. So far I am sleeping much better and haven’t had to take an Advil or Tylenol before bed!0 -
LovefromPhilly, I wish we had MM here but we do not. Nor do any states in driving distance. I think it would help me but just the oil, no vape, since my lungs are iffy. States should have legal prescriptions I think.
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Jaylea, let's don't assume this can't be fixed. Please consider a consult at Mayo Clinic or perhaps there's someplace closer you could visit. Take a look at this:
https://www.mayoclinic.org/diseases-conditions/voc...
I'm going to remain confident that you'll be singing again soon. I'm praying for that...really hard.
Love from PatG
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thanks everyone for sharing your experience with CPD oil, I am definitely leaning toward giving it a try. I leave the middle of October for a 2 week cruise down the Elbe river from Prague to Berlin, and would love to NOT have the stiffness, aches and pains. If CPD can help, I will likely give it a try.
PatG - I started out at 125mg for about a year, then lowered it to 100mg, due primarily to fatigue. At my three year mark, we decided to go down to 75 mg. So far my tumor markers are holding steady - a little elevated last month, but still in the normal range. I will have scans in November when I get back from my trip. I feel fortunate that I/L has worked so well for me. Wishing the same for all of you.
Kitty
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Jaylea, what a total bummer. I agree with Pat...second opinion at best possible location. We need you singing again. Sending a massive hug.
Anna, I wish that I had good information to offer, but I’m much older than you. There is great wisdom, information, support, and kindness here. And there are wonderful strings out there. Good luck to you!
Grannax, we finally passed Kent Island midday yesterday, and I waved to you, even though you weren’t there! HOME later today and a fire in the fireplace, unless too warm outside. Maybe even then. Tanya, you’re quite right..ready to be off this boat and to quit bumping into things. Loved almost every minute...but ready to be home. 1400+ miles!
Hugs to all, my dears....
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Westiemom -- people can feel sick after getting either version of the flu shot -- but it is not from the shot itself. It is from the immune system activating. It usually only lasts a day or two. I get the flu shot every year -- sometimes I feel absolutely fine, others I feel sick for about a day. It's not anywhere near as bad as I have felt the few times I've gotten the actual flu! Definitely talk with your doctor about it.
WANDERING -- I had a rash at the injection site after my second Faslodex injection (Aug 30). I read through the Faslodex girls thread and talked with my oncologist... for my 3rd injection on 9/13, I started taking Claritin 5 days before and continued it 5 days after, and I did not develop a rash.
Jaylea -- so sorry about your vocal issues! Singing is one of my great joys; I think I would feel very lost without it. You're in my heart, and I'll sing extra loud for you.
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Joyner What does your boat look like? My DD was there yesterday. She sent me a beautiful pic of a sailboat with three sails. I know you have a motor on yours and you must have a cabin. She said a storm came in on Wednesday. She was outside trying to catch cushions before they blew away and a chair almost hit her head. I'm going to put a that pic on here, just in case it's you.
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Is this you, Joyner0 -
My ibrance break is over. I see my MO today to tell her my decision. I hope she doesn't try to talk me out of staying on Ibrance. She has a sample bottle for me, I'm sure my insurance wouldn't want to pay for Afinitor and Ibrance in one month. I'm saving the A just in case I need it at some point.
Praying for all of you, my friends the Ibrance dancers.💞
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Just wanted to post the latest from here.
So, my insurance denied the PET scan. I asked my MO and staff if they could file an appeal. They did. And same results- denied. So my CT scan is Oct 5 with MO appt the following week. We shall see. You know how it is----scared this is the one with progression. I am planning on discussing the whole thing with MO at visit. Should I do MRI's or bone scans in addition to CT or just keeping doing CT's every 3 months. (Ins might not approve MRI or bone scans either, who knows)
Keeping you all in my thoughts and prayers.
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Candy, my stealth radiologist friend, who always sneaks a reading of my scans for me, told me that bone scans don’t give you much info and that he sees the more as base lines.
Tuesday will be my second PET in a row. Last one in May and nothing in between. Not denied yet, or at least not that I’ve heard. Fingers crossed.
Grannax, gorgeous boat but not ours. We are all power, no sails. Hope your DD wasn’t hurt by flying stuff!
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Joyner beautiful boat but I know you're glad to be home in your soft roomy bed! Congrats on completing your voyage.
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Jaylea my heart goes out to you. Sending you hugs and prayers. Follow the advice from your sisters here. They all said second opinion and Pat M linked an article.
Joyner welcome home!!!!! Fireplace sounds wonderful even in the cool morning would be great.
Kitty enjoy your cruise.
Love Philly I had a professional at the store and another person prior to that talk to me about the treatments available and products. It's relatively new here in Tampa and there are only 3 dispensaries available. I went in to the store very green. I had no idea that everything was oil. They did recommend that I start at very low doses. I took oil in the morning for pain and vape in the evening but I'm just 4 days in.
Tanya
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Oh, Grannax....praying that your MO will agree to keep you on Ibrance and keep the other for a possible future use
xoxox
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Jaylea - just wanted to send you a great big hug! 🤗 I hope that further investigation of the root cause as well as options mentioned here for recovery yield positive outcomes.
Joyner - your boat is beautiful! I hope by now you are home and dry and on stable ground.
GrannyX - fingers crossed for you. What a beautiful view your DD has!
For everyone else, here's my Lucy saying 'Hi everyone! Nice to meet you!'
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LaurenH, I love Lucy. Wait...that sounds familiar! She's really pretty.
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Jaylea...Stay strong...get that 2nd opinion as suggested..hugs and prayers to you
Grannax....hope your MO will keep you on Ibrance
Joyner...Love the boat. Good luck with scans0 -
Awwww....Lucy !
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How often do we get Joyner's terrific boat and Lauren's delightful Lucy on the same day?!
Nice way to start the week-end!
Love from PatG
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Yes, my MO was very agreeable for me to stay on Ibrance. Yay. I started tonight. Thanks for thinking of me, maybe that's what helped make it easy.
Tomorrow and Sunday I get to spend time with my grandson. Looking forward to that. Love that boy.
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Grannax, the Ibrance Dance just ain't the same without you! Do-Si-Do, girlfriend! One down and twenty to go!
Love and a hug from PatG
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HOME...and boat tied up at the dock. WHEW! Thanks to all for joining me on this very long voyage from Wisconsin to VA!
Hugs to all of you....and ROLL TIDE!
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And Lauren.....Lucy is wonderful! Is that a bone she's holding? Love her eyes!
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OMGosh, Joyner, your back patio is amazing! I’m going on vacation at your house! Do you take reservations?
SoLucy likes to carry around those little rolled up chew treats. We call it her stogie. 😂
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Woot woot GrannyX!! Enjoy your grandson!
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Lucy!!!! 😍😍😍😍😍
Look at that beautiful puppy!!!
Joyner - welcome home! Must feel so good. And I agree with LaurenH - we are all coming there for a vacation!!! Beats my urban jungle landscape by a million!
Grannax- so happy to hear you can continue with Ibrance. It has been my first line of treatment thus far and from what I am reading in these boards - one that people don’t wanna part with due to its gentler SEs. I am sending lots of wishes into the universe that it keeps working for you and be all of us.
I have a very very teeny cold but it’s not gonna keep me away from my Zumba class this morning.
Do si do is right PatG!
Happy weekend everyone!
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