Ibrance (Palbociclib)
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It's been months since I have written here, however, I read your stories daily....laughing at your jokes, feeling your anxiety and celebrating your good scan results. This forum has never stopped giving me the support that I needed at times. It's almost been 1 year since my diagnosis and 9 months on Ibrance. Although things haven't been easy, but oddly at times I feel the joy of living in this state of uncertainty. It pushes me to explore the interests and territories that I once never considered. It also got me out of the world of competition for success measured by money and prestige. Now I feel at peace and spend most days happily painting, exercising, and doing things I long loved to do. I figured that if my only job now is to live, I better live well.
The 9 months on Ibrance have been surprisingly tolerable. ANC counts hovered around 1 to 1.4 at the start of the cycle. Hair is thinning, joint pain is becoming more noticeable, a little fatigue but overall tolerable. MO extended the scan to 6 months after the first scan showing remarkable improvement. However, now with the scan time approaching, the anxiety is starting to build. I feel some pressure on my chest which I automatically associate with it being mets with plural infusions which is where the mets were found. All the "what if" scenarios come to my head....and all of a sudden I can almost hear my MO telling me the worst or on the brighter side, maybe the best! It's so encouraging to hear many of your stories of being NED and those of long term survival. NO! there is no expiry date labelled on us and the stats are just numbers! I only wish that as time goes by, I will have the courage to just live....
For now, i will continue to follow your stories as inspirations. I personally know a few people who have miraculously survived cancer for over 10 years when the doctors once given them only months to live. I want to be among those who have a story to tell in 10 years...
Wishing you all well and continue that Ibrance dance to the music of tango....
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Joyner, I vote for changing the appointment until after the new year! Have fun and fly that NEAD flag!
Love from PatG
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thereishope, You've got this! So many people live their whole lives thinking money and prestige are the key to happiness. I had one friend who, even in her final weeks worried that her children wouldn't value her pricey antiques enough when she was gone. She was one of the few I knew who never seemed to learn any life lessons from her cancer diagnosis. She remained angry with the world and made life miserable for her family and medical caregivers. I've always found that so sad.
I'd love to hear what you're painting. That's something I found joy in once again after my second diagnosis. We started a group using "The Artist's Way" book, had workshops and brought in what we were working on at home. Some of us did a joint art show which was the first time I sold my work. Selling it in galleries has been fun but the most fun has been donating to charities that I love. I hope you'll post a picture of what you're up to.
I look forward to reading your words 10 years from now...if you have time to write them in the very busy life you'll be having!
Love from PatG
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Just checking on the dancers after a long while. Nice to see Pat making us all smile with her positive humor. Just letting some of you who didn't know me during my short time here, I'm doing really well. Stable on Heceptin, letrozole and tykerb. So there are other therapies out here that work too. Joyner, what a wonderful trip. Sorry you r stuck in NY ..hope you can reschedule . Keep dancing . Mair
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Thanks for the update Maire. Nice to read this as I am pondering my little potential setback.
Went sailing for a couple of hours today. So nice that I can still do that with my DH. Grateful for this step of the dance!
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Joyner, we've once again on similar paths. We both got the same great news in May, we both have our scans scheduled 10-2. And now you are parked outisde my city!! My husband's office is way over on the West Side in an old warehourse overlooking the Hudson. I called him when I saw your post and told him to wave! Did you see him?!?
Maire, SO nice to hear from you, and so glad you are doing well!
Thereishope, our friend Pat said it all!
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love your posts PatgMC!!! 😍😊☺️🌈🌈🌈 I have a little cough and of course am having all the scary thoughts about lung metastasis! I just need to get your posts blown up and hang them all over my tiny studio apartment!!!
And Lynn good luck with the getting home! That is a cool photo! We are having some majorly exciting rainstorms in the area. Hope you are safe n sound and good luck with the scans!!!
Hugs abound
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Thanks for the sweet words, friends. We're all in this together.
My message of the day is "Tessalon Perls". Everybody write that down because they're miracle workers for a cough. Be sure to ask for the highest dose.
And here's my meme of the day. I just saw this for the first time and thought it was perfect for all us pioneers:
Here's a toast to your struggle and your strength as you face whatever you must this week!
Love from PatG
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Wonderful, Pat! Maire, so good to hear from you and so glad that all continues to go well.
Headed out into the Atlantic this AM. If all goes well, we should make it home by Sat in time for Tuesday's scans. I want to get home, anyway! This boat ain't THAT big....1000 miles so far with another 400 or so to go. Ready for dry land, room to stretch out in the bed without whacking my DH, and to quit rocking.
Penny, sending hugs to your husband in the West Side warehouse, and as always to you, especially on Tuesday.
Thereishope, we'll all have stories to tell in 10 years!
xoxox and onward.....
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PatGMc - thank you for sharing your comments! I needed to hear them. Guess I didn't realize how much I needed a bit of inspiration. I'm feeling ready to go tackle the world again.
Look out, world! I'm comin' for ya'. And it won't just be this one time. I'm comin' again, and again, and again, and again....
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Reading posts that I have missed the last couple of days. Good to get caught up with you all.
Ok. So what do you all think about this.....
I am scheduled for my 3 month CT scan for Oct 5. Nervous. I ask my MO about a PET scan too. I have only had 1 at diagnosis of mets Sept 2017. And I would like to see it now 1 year into the Ibrance dance. Also the CT looks at chest and abdomen where as the PET looks at neck to toes. The CT measures size whereas the PET measures activity. My MO totally agreed. The insurance company denied the request for the PET. We are appealing the denial.
What do you all think? Am I being overly cautious? Pushing the issue?
We only do CT's with me. No other scans. Not even mammograms ( so far, I am trying to get MO to order one ). I just want to make sure we are not missing progression anywhere else in the body and not know it. That the cancer is quietly taking root and gets out of hand before we do catch it.
Am I wrong in asking for MORE tests? Am I being a bother to the office staff and doc in asking them to file more paperwork? Am I fighting the inevitability of this horrid disease?
Whatever the insurance decides, I will have to abide with it.
If they do deny the PET, what other tests, measurements, should I be looking at? The CT abd is primarily looking at the liver mets. What about how my bones are doing? Or progression elsewhere?
Sorry to be rambling on.
Any advise would be helpful.
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candy-678, I've never had a PET. I have CT and bone scans about every three months. The bone scans are head to toe. My insurance has approved them....so far.
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"They" say MRI is best for liver mets. Whoever they is. Ha. I usually only get PET because I'm allergic to CT contrast. That's how doc gets insurance to pay for it. Because of my big scare this month, I had a MRI. It did not show the area of concern that the PET
did. So, I am going forward, trusting the MRI. PET can show inflammation, etc. I am surprised you are not having regular bone scans.
I don't know if this is helpful. Just another MBC sharing my experience.
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Candy, I only get PET/CT scans every 6 months (every 3 the first year) so I am not a lot of help. However, is there any symptom that you can use to warrant a PET? You might have to show cause like pain, etc. to get insurance to pay. I had extensive mets to many bones and liver initially.
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Candy - I have bone mets and get contrast CT and Bone Scans every 3 months, never had a PET or MRI - I go October 10 for scans, then head out of country for 5 weeks. .I just finished cycle 7 of Ibrance/ Letrozole and have xgeva shot every 3 months as well. All the best to you in getting necessary approvals. janice
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Thanks to all for the replies. No I don't get bone scans. Why I don't know. I have never had an MRI. I know the liver mets is very important since it is an organ, and the CT abd will show if the tumor is shrinking or growing. But how about other areas that cancer could show up? Or has already been proven to be. Seems like my MO just concentrates on that liver mass every 3 months.
I am having more pain in the back of my neck and the one and only PET showed osseous met in cervical spine. I told my MO about the increased pain at last month's visit. She said it sounded like tension headaches. I don't think so. My neck hurts EVERY night now and I don't think I am that tense all the time. I wonder if the mets has gotten worse in that area or if the vertebrae is weaker.
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Candy, I know Blue Cross won't authorize a PET until after a CT has been done, in most cases. Maybe after your doctor does the CT, she can then request the PET to check activity in the bones.
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Candy678 I have had a CT scan after radiation but I get a PET for everywhere else and an MRI of my spine for the bone mets every 3-4 months. The did my PET and MRI scans bc I had pain.
Pat M thanks for always being encouraging with your study and life shares.
Joyner that picture is gorgeous although I know you're sick of being a sea farer by now. 400 miles to go. I pray you get home in time for your appt.
thereis hope 4 us - I think that the test times vary for each of us.
Take care all
Tanya
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hello everyone. For those wondering about testing schedules, I am on my 40th cycle and I get CTs - neck, chest and abdomen - every 6 months. They do monitor my tumor markers each month, as they have been good indicators in the past. And thanks Pat for the meme - a good message for all of us.
Wondering if any of you have tried CBD oil for your joint/muscles aches. I am tempted to try it, but wonder what others experiences have been. It would be great to have some flexibility back and a little more agility would be nice.
Thoughts anyone?
Kitty
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time-for-a-cure, I'm down here in Memphis celebrating your 40 months! Thanks for the encouragement! Have you been taking 125mg all this time? I'll be interested in hearing how the CBD oil works.
Love from PatG
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Hi everyone! I'm about a week behind because I've been on vacation.... but I wanted to weigh in on the flu shot conversation, since I work in the public health field,,,,
1) Should you get the flu shot?
Everyone older than 6 months who does not have contraindications (like severe allergy) is recommended to get vaccinated annually. It is especially recommended for people who are at high risk for complications from the flu, including persons who are immunocompromised (like us!). When vaccine supply is limited, high risk people are prioritized to get vaccine.
2) Is it necessary to get the high dose flu shot?
Only if you are 65 or older. The regular age-appropriate vaccine is recommended for immunocompromised patients.
3) Is the flu shot a live vaccine?
Some are and some are not. Live vaccine (LAIV4 -- Flumist) is NOT recommended for immunocompromised patients. Inactivated (IIV4 -- Afluria, Fluarix, FluLaval, Flucelvax, Fluzone) or recombinant (RIV4 -- Flublok) is recommended instead.
Happy flu season!
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Hey... I am 33 years old and struggliing with anxiety due to the diagnosis... Anyone with experience with Ibrance, antihormones, effexor/venlafaxin and remeron/mitrazapin ?! Currently on 100mg Ibranc
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Twinklecat - Thank you!! I wondered about the active vs inactive. I have been incredibly fortunate, last time I had the flu was 25 years ago, it knocked me out for two weeks but I have never had a flu shot. I hear some say how sick they got after taking the shot, is that due to active vaccine? Cause that pretty much scared me away from the shot but now with Ibrance/Letrozole my counts are very low, might have to get over it and get vaccinated.
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Anna33 I'm on cycle 21 of Ibrance and letrozole but I'm way past 33. There are some young women on this thread and there's another thread just for young women with MBC. It must be a huge shock to you to get this DX so young. Some of the meds you mentioned, I'm not familiar with.
Where are your mets? We have specific threads for different mets. There's a bone Mets, liver mets, etc.
I'm doing well on Ibrance but I know it's very difficult when you're young and have to take meds to shut down the ovaries, etc.
I hope one of our young ladies will post here to help you with your specific needs.
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Hi Anna 33 - so sorry to hear that you have joined us. I was diagnosed on my 40th bday stage 4 mets to bones. On ibrance, letrozole and xygeva and lupron.
MO offered me effexor for the hot flashes and anxiety but I declined and have just done a "wait and see" kinda approach. The hot flashes come and go and the anxiety and depression comes and goes in waves. Sometimes like every hour! Sometimes like with a couple days in between.
I see a therapist weekly to help manage my emotions around this diagnosis and figure out how to best manage my life now that I have the diagnosis of MBC. She is INCREDIBLE and I am so grateful for all her help.
What kinds of questions do you have about treatments?
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Hi ladies
Time for a cure and Pat I just started taking CBD oil 2 days ago. I was reluctant but I can’t take any opioids without SE’s nausea headache etc and I already have SE’s from ibrance faslodex zometa. I got a small supply of a variety of oils and vape pen to see what works.
It put me to sleep so I’m not taking ambien right now. It reduces inflammation and pain so I stopped the malodexin. I’ll let you know where this goes. So far I prefer the oil over the vape pen. I think if you’re interested you should speak to a professional. There’s a lot of stigma attached to this medicine. I’m not mentioning taking it to my family and friends.
Tanya
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Hello fellow MBC ladies. I had my regular appointment with my oncologist yesterday. I had my regular two shots of Faslodex (Xgeva also). I usually do not have a reaction to the Faslodex shots but yesterday one of the shots caused sever itching at the injection site. (Kept me awake last night off and on all night). I got up and put some lotion on the site which helped a little so I was able to get some sleep. I would like a suggestion about how to deal with this externally. (no pills, etc.). Also tumor marker went up last month slightly but still pretty tolerable as far as I am concerned. I have had two bouts with what he thinks is an infected saliva gland - doing a PET scan next month. Otherwise, life is good. My husband is extremely supportive which is my salvation. Getting ready for winter (snow forecast this week). Love to all.
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Hello lovelies...
It's been a long time since I've checked in. Just read the last few pages and happy to read about so many doing well, NED and of course PAT's ever-uplifting posts.
Anna - I am young too. Just turned 35. I've beeen on Ibrance 10 cycles with Letrozole... Dose reduced to 75mg with 2 week breaks - overall I feel pretty good. I was originally dx in 2012 at 28. Mets in July 2017. If you update your profile with your diagnosis etc it helps for others to answer questions and see your treatment history etc. I hope you are managing ok. MBC feels so unfair when we are young.
TimeForACure - I've been taking CBD oil for over a year now for anxiety and pain management. I feel like it really helps overall. You have to start off with a smaller dose and gradually build up the amounts over time. I am now at 10mg a day. I haven't needed to take Ativan in over a year now since I started taking it. I also like that there is zero high.
Candy - I've only been doing CTs... no PETs.
As for where I am at... still in a funky in-limbo phase with Ibrance since April. I am gearing to start cycle 11 but waiting to begin as I have to have another bronchoscopy biopsy (October 3) on the largest lung spot that keeps growing. I am stable mostly but two nodules increase about 1mm/month. I've been CT scanning every 2 months as result. I'll be having my first bone scan since mets mid October just to check on some hip pains. Pretty nervous about that as well as the lung biopsy via bronchoscopy. I am hoping that it's still ER+ and that once I switch to Faslodex it stops growing.
I may have asked this before but forget... Are there others with a mixed response to Ibrance that have stayed the course? My MO still doesn't want to switch me to Faslodex until there is more reason to. Since Letrozole still holding most spots at bay and other areas completely disappeared. I am just feeling rather unsettled that things continue to progress (although mildly) and I'm not moving onto a second line as others seem to have. Would appreciate hearing from anyone who has experienced this limbo.
Besides all of that I feel pretty well overall. I have a cough but MO says not related to mets as theyre so small... I had an amazing summer camping, retreating and spending tons of time outdoors. Living and thriving as best as I can
Hugs to all
X
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Hi, friends, just got back from an appointment with Head and Neck MD and am feeling blue. A couple of months ago I lost my voice and have been having coughing/swallowing issues. Doc scoped my throat and discovered my right vocal cord is paralyzed. The guess is that a tumor is pressing on a nerve. The mystery is why it started recently, since I've been on treatment 14 months and scans have been stable. The concern is that there's a new tumor in an area that hasn't been scanned, and that's the base of the skull, where the vocal cord starts. He will consult with my MO on whether it makes sense to MRI the area. But apparently the vocal cord damage is permanent, which just sucks. I can't be heard in any group setting. Talking on the phone is difficult. I love singing (am bad at it, but not the point) and can't sing hymns at church. I will adjust and move forward, but for now I'm just sad that I've lost a small piece of life. Boo.
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Jaylea, I am so sorry to hear about this setback. Know I will be praying for you daily.
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