Ibrance (Palbociclib)
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Snooky - I join you in prayer as well.
I am in cycle 13 of I/Faslodex. As I was encouraged here earlier on in my I/F journey, Ibrance can take awhile to make a difference. If you do not get glowing scan reports, it does NOT mean thjngs are failing. God is in charge. Not the scans
Gumdoctor
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joyner- will you only be on xeloda? i saw my np friday and asked her what would be the next treatment and she said “why are you going to make sure your insurance covers it. i told her that i wanted to make sure there’s a plan if and when progression happens. april will be here before you know it. where will you sail to?
grannax- how are you doing sweetheart? when is your new york trip
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I too have scans tomorrow and meet with substitute MO. Serious concerns about lung lesion that has been growing. Suspect progression but previous apathetic MO has not addressed at all.
I as I have already posted, previous MO was arrested for attempting to strangle his estranged wife and threatened to shove a butcher knife down her throat. There are extenuating circumstances of course and I get it. Estranged wife was a heroine addict and has done prison time for child abuse. She was out on parole when this happened. He and his whole family need prayer. And I understand his apathy toward me (and probably other patients) more but now I have to look forward and be secure in my treatment plan. I am no longer secure in my treatment plan. Yet.
This is a welcome change for me, just not the way it happened for him and his family. It is also scary to have to start all over again with someone who does not know me or my history. And this likely lung progression is very scary to me.
But again, God is in charge, not me, not the apathetic/troubled MO, new MO or the scans. I pray for clarity for whqt God has in store for me and the strength to get through it all.
Love and prayers for All here,
Gumdoctor
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Oh, Gumdoctor....bummer!! Good luck with the new MO and the scans! Maybe it's not so bad that you have no history, etc with the new doc, as that's the way it generally is with a typical second opinion. Since you fear having to make a change, might this be a good time to line up an actual second opinion (beyond the new MO) at one of the NCI facilities, just to be sure that whatever you do is the right thing?
Holmes, so far it's just Xeloda and Xgeva, but we'll see. I'm getting great advice about preparing with lotions, creams, and cooling socks. Maybe I'll be lucky and not need them. I obviously agree with you on being prepared. Until the recent unpleasantness, my onc wouldn't give me an answer about next steps, as he said, understandably, that it would depend on the situation at the time.
As far as the boat is concerned, we intend to cruise around the Chesapeake initially, which we've done for years, but there are endless places to go. We live just off the Rappahannock River in VA, which is a tributary of the Chesapeake.
Grannax, you and I are still due our roll in the surf! But, I'm not doing it until it's WARM. When is the catwalk event??
Hope, I'm with you....not leaving this string. It's where our support system and our buddies are!
Hugs to all and best of luck to those with scans-
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Joyner,
Yes I am going to pursue an official second opinion with MD Anderson. Military will set it all up and pay for it.
Prayers for you for all you are going through currently,
Gumdoctor
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Excellent!!
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Lynn, once you're done jazzing up the boat, rickashay (is that a word?) on over to the Mississippi toward Memphis, then take a left at the Wolf River. I'm afraid of that crazy water but I'll bring a BBQ picnic and meet you on the shore! Stop and pick up MBC friends along the way!
To all of you having scans this week, I'll be praying hard for NEAD but will be glad for Progression-Free Disease. May God give you peace and comfort.
Love from PatGMc
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Not that it matters now...but I have been going to a highly esteemed NCCN facility all along since bilateral stage 3 node-positive that the Army missed for over 3.5 yrs...Washington University in St Louis...where I graduated dental school...I trusted them and was secure in my treatment plan. Now I do not trust them and am not secure in current diagnosis or tx plan.
Who can we trust??? Right now I only trust God.
Gumdoctor
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Y'all are so good to remember about the Catwalk. It's February 16. Say Yes to Hope is paying for my flight and hotel. It's at the Watson Hotel and the show is in the Ballroom at the same hotel. It's from 6 PM to 10PM. The runway is a real runway this time. Yikes. And there will be over 300 people watching. So, we ( the survivors) fly out Friday morning. We're supposed to go to a press release on Friday night, I don't remember where that is. I'm planning to play follow the leader, Suzanne Lindley, because I've never been to NYC. We'll be busy most of the day Saturday, then the show. Sunday we fly home. This first visit to NYC will be dedicated totally to the Fashion Show, I won't get "to DO" NYC. Those of you who want to know more can Google SMGlobal Catwalk. Samina Mogul is the international designer who has taken us under her wing. I don't know how much the tickets cost to actually come to the Show but I'm sure that info will be online, too. If anyone lives close enough, I would LOVE to meet you in person! Oh, and I get a new gown and jewelry. I chose a red one made like the black one I wore in Dallas. I'm supposed to get it before we go so that I can alter it if necessary.
Gumdoctor I go to MDA for my second opinions. My favorite MO doesn't work there anymore. So, I don't know who you'll get to see. They helped me and my husband so much through the years. Me, especially, in 2000. I go way back with them and trust them. 💞
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Grannax, this is how I picture you at your big fashion show....(Lady Gaga tonight at the Golden Globes). You will knock 'em dead and we'll be waiting to hear all about your success!Love from PatGMc
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LOL PatG. Too funny. 💞
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Snookie,
I have CT scan today and onc on Wed.... joined with you too. Solidarity... here's to all the scans happening this week, may it be positive news.
I haven't been posting much since I've stopped Ibrance and moved on to Abraxane and now Xeloda, but I love reading this thread because the group of ladies here give me strength with the way you support each other.
Our journeys may be different, personalities too, but we "get" it in a way that no one else can. When I feel like giving up... it helps to come here and read and it makes me smile.
Joyner, I admire you and how you're advocating for yourself and getting all the information you can to make good decisions that are best for you.
Vanessa
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Thank all of you for your prayers for me for my Onc this am and Scans on Tues. Your prayers lifted me up. Yesterday, esp. in the evening, I spent most of the night shaking from stress. Between reading the Bible, and reading all your words of comfort, I've woke this am. in a totally positive frame of mind. I know, I mean, I really know that GOD is taking care of me because he's been doing it for so long. All your wonderful reminders, reminded me that I can get thru anything. And if F/I isn't working, there's always a different drug to try. Prayers and Blessings for all of you today.
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Snooky & Vanessa, just reaching out to wish you well with scans and oncology appointments. My scans are in a few weeks, always a scary time waiting for results. I’m hoping you can find some peace or distraction during scans and during the waiting for results. Hugs to you both and please keep us posted on results.
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Grannax....I believe you will be very busy during your brief stay in the Big Apple for regular sightseeing, BUT if you have some free time and extra energy, please come and meet me in the downtown area. I live in a very cool part of town, very close to mid-Manhattan where you'll probably be staying....
Im within a walking distance from the Flatiron Building, fifth ave and Union Square Park, Washington Square Park is a few blocks south which connects with soho, and west to the chic meatmarket district and the faboulous High line....a short subway ride from the Hudson River overlooking the bay, the Statue of Liberty, the freedom tower, etc etc
I'll make sure you won't get lost or bored....XXXOOO
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Throwing in many prayers for good results for those with scans/appointments.
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hello everyone...I haven't been on in awhile..but doing good ,started on ibrance/letrozole in aug....had a ct scan end of nov...and the very small spot the dr was watching on my t-1 verbere on spine did not show up on the scan! I praise the Lord for that...dr is keeping me on I/L..at least til april when I get to meet my new onogolgist...the only side effect I see and or feel is my thinning hair....I don't wash it quite as often as I once did,cause I do loose it a lot when I wash it...but thankful that I don't get sick from it....prayers for you all that God would take away all the cancer within you all!..
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Welcome, buzzy....we're sorry you have to be here but glad to have you among this wonderfully supportive group of friends and cheerleaders. Great news about the spot on your spine not showing up, too. We hope that I/L will be good to you for a very long time, as it has for many-
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Okay.... I must vent for just a moment....
Went in this morning for my 10:30 a.m. CT scan appt. after drinking gross liquid at 6:30 a.m., 8:30 a.m. and 9:30 a.m. I get to the appt and got access to the port and waiting, When some sweet gal comes out to apologize (sure it was not her fault) that they were still waiting for insurance approval... ugh... could no one call me? Okay.. over, done.. moving on....
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French horn. I'm pretty sure I would have thrown a fit! That's absolutely inexcusable.
Miaomix I understand not one word about your location. Lol. That's how much I know about NYC. I doubt I will have any time for myself. I just found out that my daughter and her BFF are coming also. I'm sure we'll try to do something together. Between my BFF, my daughter and the other Survivors I'll be busy. But, I would love to. That sounds like a perfect place to live.
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Wow French! I've had one CT scan before and I never drank anything at home. Once there, I drank one glass of ?????? Plus, I have one scheduled tomorrow and I know nothing about drinking. I'm so sorry that you went through that!
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I'm glad you'll have your family with you Grannax....have fun whatever you have time to do!
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Ok ladies I need advise again. I am going to also post in Liver Mets Thread. I got my results of my CT that was done last week. I don't see my MO till Jan 31--their idea not mine. The CT reads " Stable hypodense lesion in lateral segment of left hepatic lobe consistent with patient's known metastatic disease and having similar appearance to Oct 2018 CT. No new hepatic lesions identified with certainty though would follow up area of decreased density..., this may merely represent artifactual decreased density." And on summary, " Follow up of hypodense area suggested with considerations to include new small metastatic lesion though artifact favored." So.... what would your ideas be for this??? How follow up----MRI, PET, or wait till next CT in 3 months ( April ) and see if it is there then???? The thing is, the radiologist reading the CT's is not the same person each time. Some results show a measurement of the lesion in centimeters or millimeters and some results like this one have no measurements mentioned just 'have similar appearance'. Some months the results are basic and not much info and some months it tells everything---how much stool in the colon, the kidney stones in the kidneys, etc. As I said, I have not talked with my MO yet, but I wanted to discuss with you all and have an idea before I talk with MO. I would think the MO would see this result and want to talk with me now instead of waiting 3-4 weeks for my appt, but who knows. I think the office is pretty busy.
HELP PLEASE.
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Ok, so after I posted I went back and caught up on reading your posts. I love that this Thread is sooo active. Prayers to all having scans. I needed reminded with your posts that God is indeed in charge----not me or my MO.
Grannax--- Please post pics of your adventures. You come from Texas, right? I wish on your way to the Big Apple you could swing by Illinois and pick me up. It would be great if we all could meet face-to-face, wouldn't it.
Talking about insurance approval-----I am now waiting on my Ibrance refill. The yearly prior authorization was expired in Dec and my MO office just now submitted the paperwork to the insurance company so I cannot get my refill yet. I have 6 pills left!!!!!!
I drink 1 liter of contrast 1 hour prior to the CT. Yuck. Tastes like lemonade. Then I have to pee during the test. Almost didn't make it to the bathroom last time !!!!!! They also do a contrast dye in the IV during the test.
Welcome Buzzy. My hair is thinning too. But I do wash it daily---with my shower. Then have to clean out the drain !!!!
I always love hearing from you all. And will be interested in what you think of my post about my CT results.
Hugs.
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I love this group too and I am a Verzenian - LOL...but we’re all in this together
Hey, I'm just wondering how may people attend a BC support group in person? I am finally considering going to one...and give it a try.
I think about EVERYONE on this website and wishing you all the best. I am so thankful every morning I get up.
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Hi Candy
Your scan results are good — stable is good! I am an RN and the onc I work with would order a repeat CT in 3 months if he recieved this report.
Some oncs can read scans themselves and determine if there are any areas of concern, perhaps yours can. You should ask.
There is nothing wrong with calling the office to see if you can get your appointment moved up either.
Leigh
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Grannax, I was so upset.... the lack of communication is unexcusable....
Candy...it sounds stable and am thinking they would get you in sooner if your onc was concerned ?? That's exactly what I have to do is drink a liter and contrast dye.
Chemokaze, I have found my own support group here in Wyoming.. I found a couple ladies with mbc and we do some things together, coffee, restorative yoga, it's nice just to have someone to call and hang out with sometimes. I say give it a try.
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Chemokaze, as one who has attended support groups and lead support groups for almost 25 years I would tell you they are good for some people and not as good for others. Of course, it depends on the group. My advice would be to visit several if you can. You will know fairly quickly if there is an atmosphere of hope, if the facilitator knows how to keep one person from taking over, if everyone's story is honored. If you feel you're wasting your time or being drug down a hole you can just pick up your purse and go home!
I met people in my first one who are still my friends (since 1994). The facilitator in that group was a man who was totally self-involved but there were no other groups here at the time. Several of us kept going so we could meet up and go to a nearby restaurant to have the "real" group! We went on to start a new group someplace else. Like Frenchhorn did in her area, you can always get something good going.
Love from PatGMc
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Wow Candy, I'm so sorry that you have to wait so long for your results. I'm going in this a.m for a nuclear bone scan and also a CT. Saw my ONC yesterday, she said she'd call with results before the end of this week. This is a big one for me, it's been three mos. since I started F/I and this will tell if this drug is working for me. Praying so hard that it is because the SE's are fairly easy for me. This is first month that the hip shots are causing pain, but it's a small price to pay if this is working. Bloodwork is always good. Fatigue can get to me but that's about it. I'm very fortunate. This week waiting will be difficult. So sorry you need wait till end of this month. I'm praying for you.
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Oh, Candy, I think it was you that was refused a Pet-Ct? Me too. Was refused in July 2018 and was just refused again last week!. Terrible that ins. won't pay for tests that our ONC orders. Good news for me, I hope is that I get to meet my new ONC this month as my other one is retiring.
Another thing that my Nurse Practioner told me was......during this coming year the Med Onc are going to be less active in our health care. The Nurse Practioners will order tests and make all decisions without approval of the Med Onc. No, idea if this is good or bad. Any ideas anyone?
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