Ibrance (Palbociclib)
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Dear sweet Ladies....
I don't post very often, but that doesn't mean that I don't care and think about each and every one of you. All of you are in my prayers.
There's so much about BC that I just don't understand. Reading just confuddles my brain more lol
Does this sound right to you? I am 64 yrs old.
Dx 7/2017 5cm tumor, one node. Had Pet/Ct and no evidence of cancer any where else in my body. I took an Al for 6 mos.( I needed room to breath) and after a sonogram was told it had grown 1/2 cm. Well, that didn't sound like much to me and I knew that scans didn't always jive with the size. So I continued on with my Al. (the onc did not suggest that the al was not working) Fast forward one yr. 7/2018 A CT scan revealed suspicious nodules in my lungs. Original breast tumor had grown 1cm. but, it got sneaky grew inward toward my chest wall and came out as skin nodules around my nipple. My onc. said you are now stage IV!!!! The AL had not worked. Never realized that cancer grew this fast. And I am grade 2 on aggressiveness.
I was put for Ful/IBRANCE just finished my second cycle. That was Oct 15. I felt great though. So in a one week period, I had redecorated my apt. lots of cleaning, up and down ladders!
The groin of my right leg started to hurt. It felt like a badly pulled muscle. Got considerably worse until I could barely walk. Went to ONc. Bone scan was ordered. It found mets in 4 places in my body. Was put on Xgeva along with the other two meds. (F/I) Then a couple of weeks after that I had an invursion fracture in my neck. (cervical) A piece of bone had chipped off while I was bending over to pick up a towel. The pain was horrendous. Arthritis and degenerative bone disease also was advanced.
What I do not understand is, if I had had a CT in July, why did it not show bone mets? That was a mere 3 months before my bone scan. My ONC said bone scans are nuclear so they are better.
I've read the wonderful responses you ladies have had with IBRANCE and I know/believe that I can achieve the same. So I have hope. I just don't understand the scans.
Thank You so much for sharing your knowledge, I have three grown sons but they are very busy with there own lives. Two of them think there's not nothing much the matter with me.!!!! My first son is my rock, however he is a type a personality and has such an active, overachieving life, I can't put too much on him.. I live alone.
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https://www.xgeva.com/hcp/solid-tumors/pivotal-trial-safety/
Excerpts:
Atypical Subtrochanteric and Diaphyseal Femoral Fracture
Atypical femoral fracture has been reported with XGEVA®. These fractures can occur anywhere in the femoral shaft from just below the lesser trochanter to above the supracondylar flare and are transverse or short oblique in orientation without evidence of comminution.
Atypical femoral fractures most commonly occur with minimal or no trauma to the affected area. They may be bilateral and many patients report prodromal pain in the affected area, usually presenting as dull, aching thigh pain, weeks to months before a complete fracture occurs. A number of reports note that patients were also receiving treatment with glucocorticoids (e.g. prednisone) at the time of fracture.
During XGEVA® treatment, patients should be advised to report new or unusual thigh, hip, or groin pain. Any patient who presents with thigh or groin pain should be suspected of having an atypical fracture and should be evaluated to rule out an incomplete femur fracture. Patients presenting with an atypical femur fracture should also be assessed for symptoms and signs of fracture in the contralateral limb. Interruption of XGEVA® therapy should be considered, pending a risk/benefit assessment, on an individual basis.
Multiple Vertebral Fractures (MVF) Following Treatment Discontinuation
Multiple vertebral fractures (MVF) have been reported following discontinuation of treatment with denosumab. Patients at higher risk for MVF include those with risk factors for or a history of osteoporosis or prior fractures. When XGEVA® treatment is discontinued, evaluate the individual patient's risk for vertebral fractures.
So as you can see, those on or off Xgeva might benefit from a careful reading of all the various consequences of taking this drug, and what happens when your MO starts the withdrawal process for safety reasons...
I'm personally experiencing various pains in my left femur that are connected with my pelvis and lower back that according to the manufacturer could eventually lead to a spontaneous femur fracture....
Since there's no obvious solution to this problem that I’ve been able to find, I have embarked on a major antioxidant and antiflammatory diet, hoping to at least stem some of the constant pains and limping, and it seems to be working....
Good luck to us all!
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Lynn, I too wonder if it wasn't the change in your XGeva that caused the problems. When there is a new symptom I try to look at what changes I've made to find the culprit. In the year before the last recurrence I had projectile vomiting and then started to have headaches. In the weeks before I was finally going in to see the doctor for what I was sure were brain mets I ran out of the Magnesium tablets I had been taking for....you guessed it....about a year. The vomiting and headaches stopped. No brain mets on the MRI! Unfortunately, I did have the bone mets show up on the PET/CT.
All that to say I'm betting on the XGeva change as the cause of your problems! You will stay in my prayers, sweet friend.
Intolight, I'm praying for you as you face your unspoken problem.
Love to all of you from PatGMc
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Thanks to all for the guidance on the Xgeva question. I meet with my onc tomorrow after the brain MRI and will bring up that question. It would be wonderful if that were the culprit!
Snookie, welcome to our lovely group of caring, knowledgeable people. We’re happy to have you but sorry that you need to be here. Do you have access to another good oncologist for a valid second opinion? Even if you have to travel? It seems to me that that would be very important. If your sons are not available to go with you to listen and take notes at the meeting, might you have a friend or relative who might do that for you? Write down all of your questions as they occur to you so that you don’t forget in the nervousness of the moment. Might your onc suggest any sort of support group local to you who share your medical situation and might be able to help you get a better grasp of options available in treatment, etc?
Sending hugs to you....
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Joyner. I'm anxiously waiting for results of my liver MRI. It's a follow up for my big scare in September. That was when my PET showed an area of increased uptake then MRI proved it wrong.
The I R who did my Y90's is in charge right now. My MO was ready to change meds just from PET but wanted IR to see if he could do another y90. HE ordered the MRI this time too. So, I had it yesterday. In the September one it showed four tiny areas of concern for mets but nothing in the area of the uptake in PET.
I'm worried, just like you are, about those four tiny lesions. That's really the reason for this MRI. If they have grown, then we know they are mets. If so, I think he will do a liver BX first, I hope so. Cancers can mutate and become totally different than the original and respond to completely different TX. Then I would want his opinion about what local treatment I'm a candidate for, there are several besides y90. Only after all that would I agree to starting a different systematic TX.
Your case is way more complicated. I know how much you want to keep taking that pill that has helped us for two years. But, it's not going to hurt or change your prognosis to go off of it for awhile until all these test results come back. Then, if your doc happens to be wrong, he will put you back on Ibrance. If he is right, you have already started on a new TX that might help during the maybe two weeks till your reports come back. Easy Peasy. Right? Of course not. Nothing I s easy in this crazy mixed up MBC world we live in. 💞
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Lynn, With all that you're going through, it's so wonderful that you're taking the time and concern for me. I thank you. Actually, my Onc is retiring at the end of Dec and I'm being transferred to another at the clinic. It bothered me a lot but, now I'm thinking that it might just be a good thing. A big hug for you.
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Someone may have already posted this. I'm kind of behind.
https://www.cancerhealth.com/article/fda-vitrakvi-...
Every step gets us closer to a cure. I'm a believer!
Love from PatGMc
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Snookie, that change might be the greatest blessing in disguise! Good luck!! Great article, too.
Grannax, my friend, let us know. We're behind you and hoping for the best possible news.
I'm up and ready to head to RVA and feeling bright and perky for the first time in weeks. Maybe this thing ISN'T what the doctor has suspected. We'll sort it out!
Hugs to all, and WOW, Pat, on that Vitrakvi development!!
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Lynn- thinking of you today . . . ((HUGS)) . . . stay Bright
Had a rough night of side effects night before last, rested lazily all day yesterday sorting Xmass gifts for family and friends! (My 9yr old asked Santa for a very Clear Readable “I HATE Cancer, Cancer SUCKS” bracelet” I ordered 50 so she & her sister can pass them out to friends after Xmass. Last night was much better, way less sweating
. Next Friday will be my 1st Blood Check!Sending Well Wishes to all those feeling Blue and working thru the crud Cancer throws out.
Cheers, Randy
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Thanks PatGMc for the article.
Question---- There are new drugs coming out all the time. The one in this article which is a TRK inhibitor in Nov and a new PARP inhibitor in Oct. How do we know what could help us individually???
I had Foundation One testing done at diagnosis in Sept 2017 and I consulted a genetic counselor ( I sought out on my own and is a 6 hour drive one way from home ) once in March 2018. But mainly I see my regular MO monthly to touch base, have monthly labs with TM's, and 3 month CT's. I have not had progression yet so when I do I don't know how that will flow.
What if there are meds out there that may help me? How do I go about finding what will help in my case? I lot of this scientific stuff is over my head.
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RanyRat1. Where did you order those bracelets? I have to get some for my grandkids and family. My grandchildren have both grandmothers who have fought and are still fighting cancer. My granddaughter is only 12 but she is gifted, I'm not just bragging. She might be the one to discover a cure for us. We're they very expensive?
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No, I don't have any results, yet. You better believe I will let you all know ASAP.💞
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Grannax we are counting on it!
Hugs, Penny
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More potential breakthroughson the horizon:
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Just wanted to share good news! I start cycle three this coming Mon. Just got blood results, once again the doctor says my blood work is fantastic and so cycle three will start on schedule. A small victory I know, but at least I can take this drug. Still won't know if it's working for another month or two when scans are scheduled. Just wanted to encourage newbies (a newer newbie than I am!) not to fear this drug. SE's? just the fatigue and strange pains that come and go. So, Jesus and I will continue to walk merrily along towards his Birthday Celebration. Hugs and Prayers for all. (am on the 125 dose)
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snooky....sending you a High Five from Memphis. I say your Ibrance is doing a healing dance inside your body and I'm sure I'm right!!
Lynn, here's to more bright and perky!! You go, girl!
Grannax, when is your next performance? Can't wait to see pictures of you wowing the crowd in your latest gown!
Love from PatGMc
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Good news Snooky! We will take every victory in celebration!
I have been on 125 for 31 cycles and my labs came back today still good (enough.) Hang in there! Chris
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grannax2 - - I googled Cancer Sucks Brackets and https://www.choosehope.com/ popped up with an actual Cancer Sucks bracket!! Founded by 3 Breast Cancer Club members they are a For Profit but make Donations to Cancer Reseach organizations across all Cancers, the goal of the company is to End Cancer and go out of business!!!
My stupid pink bracelets were $1/ea (they offered bulk pricing 1-49/$2 50+/$1
They have a lot of Choices and more uplifting messages like “no one fights alone”.
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Good evening everyone,
Joyner and Grannax I took a few days off and was shocked to hear what's going on.
Joyner hugs to you and I'm happy that you're on your way up. I know your sailing memories will sustain you through some of this. It was so nice to read all the support and hugs sent your way. Anyway, when it's time for wimpishness we will all display it as much as we want.
Grannax you always sound so positive and tough. One minute you're waiting for MRI results and the next minute you're ordering cancer sucks bracelets, or modeling a gown on a runway. I hope your middle school granddaughter finds the cure or maybe she can just make some adjustments and the cure could be found sooner.
Cure-ious you're a genius in explaining all of these difficult articles, research and studies. Thank you.
It was really heart warming to read all the support, love, prayers and encouragement from everyone. You are all amazing.
Tanya
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Has anyone heard from Leapfrog lately?
Tanya
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Hi everyone. I just had a PM from Tanya and I've answered her to let her know I'm ok and especially to thank her for her thoughtfulness.
I find I need to take a break from thinking about cancer occasionally and just live my life and that's what I'm doing but I'm holding you all in my heart as always.
I'm about six pages behind so there's no hope of catching up on any news I should know about
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Joyner and Grannax sending lots of positive vibes your way. Just checking in on my dancer friends. One year after my last dance still stable. Minor changes to meds but stable enough.
Maire0 -
I still don't know the results of my MRI, however I have communicated with my IR office. My I R to tell me that he is still reviewing my scan and comparing to my August PET. He said he is putting it all together before he calls me. What is IT. That gets my brain in a dither. I think he is putting it altogether so he can tell me what procedure am a candidate for. I'm not trying to sound like Negative Nancy, but I am concerned about It, whatever it is.
Meanwhile I am trying to be Scarlett, and think about that tomorrow. PatG. My next modeling gig is in NYC on February 16. Yes, for real. I get a another new designer gown and jewelry. Pinch me, I've never been to NYC. Flight and hotel paid by say yes to Hope. My BFF is going with me. There's even a press release on Friday night. Seriously? What the H do people wear to a press. Release!?!?
I decided my DIL would not like a a Cancer Sucks bracelet. An I hate Cancer would be OK but I didn't find one of those.
It's so fun having so many fans here, Tanya I love your compliments. Thank you. 💞
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Well, Grannax, I think how you go to the press party depends on who you are. If you're a Kardashian you get some major butt fillers. If you've just had a baby you get Cool Sculpting. If you're the president you get a Spray Tan. I hope you'll go just as you are and dance the Ibrance Dance for all of us!
Love from PatGMc
Here are my pieces in "The Show Must Go On" at LRoss Gallery in Memphis this month. I was sick the night of the reception so I missed it but I'm happy these got to be there! www.lrossgallery.com
"That Tap-Dancin' Mule's Gonna' Be Her Ticket to the Top; the Fiddlin' Squirrels Are a NO!" and "Come Together Right Now Over Me"
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What an incredible group of people we are together!
Pat, your artwork is simply astonishing. Your vision of the world comes out here in your wonderful words and visually and tactilely in your amazing artwork. My favorite so far is the "Tap-Dancing Mule" piece. On a side note, are those figures the little wooden ones artists use for body scale, etc? Attached to the structure? Fantastic and uplifting piece. (I also love the "Enduring Spirit" piece by Pamela Hassler). What a gallery that is, by the way. Worth a trip to Memphis!!
Grannax, keep us posted on the results. My guess is that it will all be good and that he is making sure by doing complete comparisons before he reports to you. On a side note, are you going for the butt filler in NYC? Save some for me to stick in my face lines, please.
Leapfrog, glad to hear from you.
All good at my appointment!! I felt so good yesterday that I stopped my onc before he could speak when he came in to report on scan and tests and told him that I bet that a) the blood culture was fine, b) the brain scan clear, c) the hip pain a result of typical "old lady" stuff, and d) the elevated levels of calcium/creatinine were yet to be determined. He sat down, smiled, stuck out his fist, and said, "And I think that you deserve a fist-bump!"
My assessments on the tests were correct, and he said that he continues to be baffled as to what caused the blood levels but that nothing in any of my scans so far indicates active disease; everything to date shows sclerotic healing bone. I had a list of questions gathered from conversations/suggestions from all of you, and Miaomix, he said that the timing of my Xgeva shots wasn't right for withdrawal, and he put me back on Xgeva yesterday.
I asked if I could go right back on Ibrance/Fas, and he said very possibly, but first he wants to do another bone biopsy (without I/F in my system and thank you, Cure-ious) to compare with my original one at diagnosis for MBC two years ago. He's ordered it for sometime next week. Seeing an orthopedist on Tuesday about the hip pain. WHEW.
One last thing…I dithered on going in when I was feeling bad (malaise, nausea, fatigue) for two weeks. He told me that my blood levels were so far out of whack that I could have died from organ failure, starting with that kidney issue, had I not come I when I did and been sent directly to the hospital. Don't fool around with how you're feeling, folks…..
Transmission ending……hugs to all!!
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Believe me when I say I don't need any butt fillers,have plenty of my own, PatH.
I am hoping you are right Joyner and I'm thrilled with your good news. I've never had a bone BX. It doesn't sound fun but necessary.
I had a sleepless night. But, my kitchen is being remodeled and the workers will be here soon. I am excited that it should be finished in a week, maybe.
My IR just texted me. 8AM on Saturday morning! He said I don't want you to be overly alarmed but I disagree with the radiologist who read your scan. I want to talk with him. Then I replied that I have another PET scheduled for December 27 ordered by my MO. He said it would be good if he could wait to see that one. Then he said he would let me know if anything comes from his conversation with the other radiologist. I told him I would try to enjoy my Christmas without worrying too much.
WOW it's so nice to have direct conversation with a doc. He is one of a kind. I appreciate it. I do feel relieved. PTL.
I'm gonna have a good day. Yipee!💞
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Happy to hear your good news-Joyner and Grannax. Great way to start a Saturday. Happy weekend everyone!
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Lynn...So happy to hear the good news!! You had me scared for you...now, I'm dancing with you.
Pat...I couldn't have said it better than Lynn about your art work. Just fantastic!
Grannax...Hang in there!
Hope
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👍 Joyner and Grannax. Been looking for your updates. I've been mostly away-my father died last week and his birthday would have been tomorrow. It's an odd time. Still, reading though and thinking of everyone here.
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