Ibrance (Palbociclib)
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neogirl - the Ibrance fatigue kicked in fairly quickly with me, and I am just finished cycle 3. I am not so tired that I couldn't travel and here I am, many miles from home in Georgia, tired but enjoying family and fabulous weather! If all goes well, I am planning a 4 week or more, trip to Australia in mid-October. Hopefully the SEs will not affect your travel plans!
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Neogirl-
I'd say you should be ready to enjoy your vacay in 6 weeks. It all depends on how your body tolerates the drug and if your blood work looks good. My fatigue is totally manageable. I always compare things to the ACT chemo regimen I went through in 2010. It was like getting hit by a MACK truck each time. This is easier. You just have to be forgiving and maybe a little less ambitious with your travel itinerary. Build in some down time.
I celebrated Mother's Day by planting my annual Mother's Day veggie garden with my family. I'm in Georgia too and it's HOT these days. I am worn out, but still managed to have lots of fun.
Good luck on Ibrance. I hope your body tolerates it well.
Missy
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neogirl, welcome to our little corner of the world! Have you considered waiting until after your vacation to start the Ibrance? Have you also considered telling the oncologist you want to start with a lower dose for the first 3 months...maybe 100mg or even 75mg? You could also consider taking one month of pills, then a month's break until after your vacation. If I had any advice for anyone in treatment for MBC, it's make it work for you and your quality of life. Vacations matter! Making memories with people you love matters.
Love from PatG
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Pat,
Unfortunately you do not receive "back pay" for the 6 months you go without a disability check. I had one case worker who said I would but when that didn't happen I questioned another case worker and was told that "no" there isn't any back pay for those first six months. If anyone received this back pay please let me know because that would be $6000.00 I missed out on.
Thanks,
Melissa
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PET SCAN is this Thursday . Hoping for good results. I have been on femera 2.5 mg and ibrance 125mg since january of 2016. I understand i am probably running out of time on this combo but am still hoping for another 6 months. Happy mother's day to all of the wonderful women on this site.
Melissa
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lissalou, good luck with your scans. We are pulling for you hoping we get to your longevity.
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Hi everyone!
Thanks for the replies.
So saw my mo on wed and I am still nead! Bone Mets are stable and my organs look good. Round eight starts tomorrow. My blood work was as she put it remarkable (my neutrophils were 2.0). We discussed a lot and she told me glycerin is fine if I don't have yeast problems (which I don't) or I could use key e suppositories. We also discussed me having nausea starting in round six. She prescribed me scoplomine patches (have been on ondestraon)which were a hassle to get (more in that later!) but since it became onset she has decided to check my brain and do an mri at the end of the month. Yeah I am kind of scared.
So when they sent in my patches to my pharmacy it takes them a day so the next day we were in the area and they weren't ready and I find out my insurance was needing a prior authorization from my mo's office. So I call Friday am to her office and I get told by another nurse that I may need to call my insurance bc they don't understand why I am being denied. So I did and come to find out this nurse (do not get me wrong I have nurses in my family and it is a thankless job) but she checked the wrong box they said call them back and have her call them okay no problem. So I do just that. I get the same nurse telling me that she's (my mo's nurse) doesn't want to call them bc she sent in the authorization the nurse i talk goes give me the phone number just in case and i did. An hour had passed so I called to find out if she ever did and she did. I was awaiting for her call back instead I get a call from a different pharmacy and come to find out she took it upon herself because my pharmacy would have them in the latest Monday to see if any other pharmacies had them in store. Which one did but she was suppose to let me know of any changes and if insurance got straightened out. I told the other pharmacy to go ahead but they and my usual pharmacy thought she had called me but she never did. I am now so upset by this and it's not the first time she has goofed on something before. I am calling my mo tomorrow and finding out if I can have another nurse that is hers who will respect me and my care and not throw it off of a cliff. I love my mo I really do but lately this head nurse has dropped the ball one too many times in the duration of my care. I did call and talked to a lady who does the top stuff and agreed that yes they dropped the ball again. She was going to reach out to the nurse manager and discuss it with her but I feel my mo needs to know. During this my mom knew about the situation and she is one of my advocates called and left a message for the same lady I talked too bc she is right this is some ground that is shaky and maybe I need another nurse. So yeah that has been my week. I will try and let y'all know how it goes when I talk to her.
Chani
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Melissa, I've had friends who applied for SS Disability and got backpay but that was some years ago. One ended up getting 18 months of it after hiring an attorney to handle the claim on a contingency basis. (He kept a percentage of it.) I would definitely revisit this if I were you. I know that not every experience is the same and I'm sorry if things have changed and I gave wrong information. I wish you luck in getting it! I corrected my earlier post just in case.
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Single, I had my regular colonoscopy recently (onc #2 said to proceed), and all was well. My first onc said that I could "get a mammogram or not" on the surviving side, in response to a question from me. After I changed oncs (first one generally wasn't paying attention), I asked the same question about getting a mammo. He said "yes, schedule your regular annual". It seems to me that I could develop a cancer on the other side and would need to catch and identify it. I don't like the idea that any onc thinks that you don't need to keep being vigilant for other things because you're stage 4; seems fatalistic and pessimistic to me, and we don't need either in our oncs.
Neo, go for it on vacation! My general fatigue started during the first month but has always been manageable. I'm about to complete cycle 16 of Ibrance/Faslodex/Xgeva (every 3 mo on the latter). I'm also a bit of a rule follower, and I fear dropping below 125 mg as long as I find that level tolerable, since so far, it is working for me, and I am stable. I do listen carefully to PatgMc's onc's starting all at 100 mg, though I'm sticking to the stronger dosage for now.
Lissalou, good luck on your scans!! Someone on this site is at cycle 33 or so of Ibrance, so you may have plenty more time on this regimen! Since I started in Feb of 2017, Keytruda, Verzenio, Kisqali, and advanced gene testing has come into the mix, and more are sure to follow.
And Chani....HORRIBLE on the nurse situation! I must admit to sort of "sucking up" to all of them, with the perhaps misplaced belief that if they like me, they'll pay more attention and take more interest in keeping me healthy! I'm always a little worried about making them mad/being considered a pain in the fanny (but not so much that I didn't change oncs!!).
Hugs to all! I have 30 coming for brunch at my house this Sunday, so I'm headed into the 2-minute warning/melt-down phase shortly. Most of the guests are clueless that I have any medical issues at all! Only my nearest and dearest are aware, so far.
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Hi Neogirl - what dose will you be starting with Ibrance? I am 3 months in on 125mg and found that cycle 2 was challenging fatigue-wise and cycle 3 has actually improved slightly. I had radiation about half way through cycle 1 and into cycle 2 so the combo may have been the culprit. Even still vacation will benefit you and it isn’t so bad that you can’t enjoy yourself. You just might need to pace yourself.
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Hi Joyner,
Thank you for your response. It was my PCP that did not recommend the colonoscopy or the cholesterol check. Strange enough, my oncologists just recommended a mammogram a short time ago because she said I was doing well. I am going to speak to my oncologist about the pcp's recommendation and get her opinion. But, the PCP is concerning me as it seems pessimistic and even if cholesterol is high and they don't want me to take statins - hello you can't cancel me on more natural treatments such as diet and exercise??? It just seemed pessimistic but didn't know if this is the usual recommendation for our situation. It does not sound like it.
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Singlemom, I find it interesting that your PCP recommended against a colonoscopy. Mine insisted upon it. It is true that cancer would likely be picked up on a scan, but I thought that the intent of a colonoscopy was not just to find cancer, but even better, to find pre-cancerous polyps. My husband and my dil both had pre-cancerous polyps. It seems to be to be logical to remove those polyps before cancer develops rather than discover it too late. My dil has a family history of colon cancer so she started the screening at an early age. Her first colonoscopy found 3 polyps, two of which were pre-cancerous. My DH has regular scans as follow up to kidney cancer, and his PCP told him he should still have colonoscopy next year. I once read an article that said that even ct scans do not always find cancer unless a bowel prep is done first. A bowel prepis not usually done for ct scan.
Cathy, Wow, I wish I had some pearls of wisdom for you to make everything go away. I hope your treatment works and I will include you in my prayers.
Neogirl, it is difficult to say how quickly SEs will begin or if you will even have any serious SEs at all. Ibrance is a crazy little drug, and everyone seems to respond differently. I have been very lucky and do not experience any bad SEs. I did have some fatigue during the first month, but it wasn't severe. I just wanted a nap on some days. I did have to drop done to 100 mg after the first cycle due to extremely low blood counts, but I haven't suffered from fatigue since then. I went to Hawaii right after cycle one, and I had a wonderful time. I say , "Go for it! Take that vacation, forget about cancer while you are there, and have some fun. Smile, laugh, enjoy."
Hugs and prayers from, Lynne
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PatgMc;
I have taken note of those drugs. My MO believes that I am BRCA1 positive. A VUS has been identified but I am being retested now. I had originally (back in 2005) asked if I should have my ovaries and tubes removed and my oncologist said no as my kind of cancer didn't travel that way lol. Well a lot has been learned since then obviously. When I was diagnosed with ovarian cancer I was referred to genetic testing and was told I was negative by the geneticist.....just a VUS on the BRCA1 gene. Now my MO tells me something strange is going on and luckily for me he is the lead investigator of the OCTANE program at my hospital so my ovarian and lung tumours are both being genetically tested as well as my blood. I have seen my original geneticist recently and she seems much more knowledgeable than she was a few years ago and is also sending my blood down to the states for a 17 panel study and also retesting the BRCA gene. I hope to have the OCTANE information in 2 months and the geneticists in 3. In the meantime the oncologist has me on this and I am so hoping it will work as if it isn't things will be just growing and growing away. As far as the spread of the ovarian. I am so far asymptomatic (which doesn't mean much with ovarian cancer) and am hoping that over the next few months, if Ibrance is working that somehow the lung mets are causing it to rise and it will drop significantly. If not the problem is that normal treatment would involve chemo and I can't take Ibrance and chemo at the same time. My MO said he would get creative and actually I think he would but obviously not good news for me. As for a spread to the bones he said he would just give me the addition of some sort of bone drug (my mind is overloaded so I'm not sure what). I'm just staying calm and figuring that the next 2-3 months will tell the tale and I'll know where I am. I am particularly interested in the genetic testing as it affects my children. My daughter is 33 and just had her first child. I worry about her and her brother. I have no family history of breast cancer which has slowed things down in the past but we do not know my fathers side of the family and my mothers is mostly men.
Cathy
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Hello. I have a question for those who travel. I will be camping for 10 weeks starting in August. I am on 18th cycle Ibrance/letrozole. I still get winded with exertion involving stairs or anything vertical, even exercising that requires on floor, standing, on floor..any vertical change. I can Zumba and walk forever.
How do I handle camping at 10,000 feet in Colorado? At my next MO appt, I will ask her if I need Rx for portable oxygen. Thoughts? Experiences? Advice? I live at sea level.
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Thanks Pat,
I will make another phone call. It shouldn't surprise me that the government would try to withhold funds I'm entitled to. I will post results when I get them. I don't like living scan to scan but what else can we do. For those who are struggling i am hoping for better days ahead. I am grateful for the people on this site who offer hope, great advice and sometimes laughter. Speaking of laughter: i went to the grocery store with my 19 year old son this weekend. I kept dropping everthing i picked up. Finally in the last aisle I picked up a bag of Fritos and of course dropped it. I then proceeded to kick it HARD off to the side. Unfortunately there was a store shelf stocker standing right there. My son casually picked up the bag handed it to the employee and said "Don't even think about it dude. She's battling cancer". Everyone moved aside and let me pass. Hope someone can use a chuckle today. Just proves we don't always know what someone else is going through. Well, unless my son is with you. LOL.
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Thanks Pat,
I will make another phone call. It shouldn't surprise me that the government would try to withhold funds I'm entitled to. I will post results when I get them. I don't like living scan to scan but what else can we do. For those who are struggling i am hoping for better days ahead. I am grateful for the people on this site who offer hope, great advice and sometimes laughter. Speaking of laughter: i went to the grocery store with my 19 year old son this weekend. I kept dropping everthing i picked up. Finally in the last aisle I picked up a bag of Fritos and of course dropped it. I then proceeded to kick it HARD off to the side. Unfortunately there was a store shelf stocker standing right there. My son casually picked up the bag handed it to the employee and said "Don't even think about it dude. She's battling cancer". Everyone moved aside and let me pass. Hope someone can use a chuckle today. Just proves we don't always know what someone else is going through. Well, unless my son is with you. LOL.
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Pat,
Read the article from the website you posted. There is a 5 month waiting period that is nonpayable. This is for ssdi. I think the rules are different for ssi. Thanks for posting though.
Melissa
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Sorry, Melissa.
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Right, SSDI is not payable back to when you became disabled. I didn't get that from SSDI but I did from the Long Term Disability I had from work. (I should have chimed in sooner but yet another UTI has arrived.) I applied online. Not too bad. You have to go slow and be patient. You can do a few pages each day and it will be saved. Then you can start where you left off. I did not use a lawyer. Not necessary in my case. I love puzzles and I had already quit working. Each state handles it differently. NM was denying too many people and the feds chose my file for review. My good luck for a change.
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Jaycee, I remember that somebody was talking aboutUTI. Now I know it's you. It happened to me yesterday and tomorrow I have PET scan. The question is will I be able to stay still. I am going to go back inthe posts and read your experience.
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Blueshine: I am also having frequent UTIs using Ibrance. You should drink, drink, drink today (herbal, basic teas) und keep your feet and abdomen warm. The best thing for fast relieve would be to get a prescription for an antibiotic. You can also take a pain killer, if you feel too uncomfortable. A few hours before your PET scan, you should however stop drinking to avoid having to use the toilet too often.
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Blueshine, I've had so many UTI's, mine are not typical any more. My symptoms are not like the usual ones. For instance, I don't have frequency which might be a problem while having a scan. They let you go to the bathroom right before (at my center, at least) so that might not be an issue. Otherwise, I don't think it is a problem. Don't go hunting for whatever I may have posted. Too hard to find. Just ask whatever you want or PM me. There is a thread here on UTI's. If you keep getting them, you could go there. The AI's estrogen blocking is a culprit in this area and you are on one. Some don't get them. Some, like me, do. I used to get them a lot before cancer, too.
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SandiBeach: I would rather be worried about the camping (sleeping on the floor?) than the altitude. Wrt altitude, you just need to do everything very slow. Do not overdo/overpace and take your time. Your body will also adjust to the height after a few days. That is how I managed my skiing vacation at up to 3400 m in April.
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SandiBeach, I lived in CO for 20 years but have been at sea level for the past 7. The advice to take it slow is wise. Also, drink tons of water. Hydration really helps--even for those you live there. You should be ok, but altitude sickness at that height is real so don't be surprised if you get dizzy easy. Since you will be there for a long while, you should adjust some. You seem to know yourself, but I would advise you to start your walks close to home so you can sit when you need to.
I plan on travelling to CO in late July and will spend a week at 6,000 ft (CO Springs) and another week at 10,000 (Keystone). I did well at 6,000 ft last year with no problems and will let you know how I do with the other height while I am there if you want.
Enjoy. I love Colorado!
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NettaGER and IntoLight: Thankyou! Appreciate all those suggestions. And yes, IntoLight, I would like to know how you do when you return. My DH wants to take me to his old stomping grounds..Leadville CO. We will be in a 4WD towing a tiny teardrop camper.
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Thank you Netta, thank you Jaycee for the advice. It never happened before and I really panic. I may try D Mannose higher dose. If it helps I could avoid the antibiotic.
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SandiBeach, I love Leadville. You are in for an awesome time!
Blueshine, ever since I started taking D Mannose I have not had another UTI, and I had 3 in 4 months time.
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Sandibeach- you are camping for 10 weeks? Wow! We go to Estes Park, COevery summer for a week for a Hertitage camp for families with kids adopted from vietnam. I think it is 8000 ft. i just drink tons of water and pace my activities and my body adjust quickly. This will be my first year with MBC but I’m assuming it will be similar....
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Hi. Yes, 10 weeks camping at National Parks. CO is one of the states we are visiting. My health is stable and my MO said go for it. I will not be getting blood draws or port flushes during that time. My MO has already ordered my scans the week before I go. I think I will ask about portable oxygen as I have SOB upon exertion when going vertical...like stair climbing. Meanwhile keeping fit so I will be ready for this August-Oct trip!
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All right ladies, PET/CT day for me tomorrow. Already started on the disgusting no fruit, no vegetables, no cheese, no dairy, no fun diet my hospital recommends for 24 hours before the scan - I'm sure the crabbiness will follow shortly.
This will be my first scan since the diagnosis, and I most hope that the cancer has not moved to any organs. If the three cycles of Ibrance have shrunk anything, that would be bonus points to be celebrated with cake.
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