Ibrance (Palbociclib)
Comments
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According to my TM history, CEA has ranged from 3.7 to 567...and my Ca27-29 has ranged from 109 to 11,907. So, she could be talking about either one. I know my numbers are scary high. But like I said, I did have a clear scan back in December. Prayers that your rising numbers mean nothing. I know it is hard to stay positive...it is ok to freak out sometimes. Have a good cry and then hand it over to God. : )
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It's definitely CEA. I always assume the number is large because of the persistent "widespread, blasticosseous metastatic disease" always stated in my PET scans. So, the key is the trend. It was nice to see the downward trend at the start of Ibrance. Maybe this increase is slow enough to get a few more months out of it.
Thanks for the support, everyone. Your last sentence is great advice, sonyarizzo! 🙏🏼
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Hi Kaption - you are on my mind. Please remain positive and hope some Fas shots can halt any progression. What part of KS do you live in? My mom was from a farm near Lawrence. I am heading to onc tomorrow for round 3 of Fas shots + Xgeva and hoping for B12 too. Then a tasty dinner with that lovely ibrance pill.
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Hi Kaption - I'm sorry that you are in limboland at the moment. It's so hard waiting for answers. If you do have to switch, you have every reason to believe that Faslodex will be very effective for you. Wish I could give you a hug in person right now. We'll b waiting right next to you. Sending good wishes.
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Thank you all so much. Tears here, feeling your support❤️
Lalady, I'm very close to Lawrence Ks..just about 30 miles east of there. Have 2 degrees from KU. Go Jayhawks
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Kaption - we are here for you. My mom was the first off her dad's farm in Eudora to graduate from KU with a teaching degree - Rock chalk Jayhawks! What are your degrees? Please find some peace today. Having movie night with an Oscar screener to take my mind off the shots. I'm planning a Sept cruise to wine country, and maybe one to Europe with my sister. Remaining positive that Ibrance/Fas have cancer fighting power along with our minds.
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lalady, I was a teacher too. Received my B.S. in education from U. of Missouri in Columbia. Then master's and Ed.D from KU. Switched from the elementary classroom to university level teaching and administration (helping teachers) for the second half of my career. Love educators!
Your trips sound wonderful. My son and family live in San Francisco and my goal is to get back out there this year. I do have some fun stuff planned and will try to stay busy and active.
Thank you
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kaption. Staying busy is important. Being worried is normal. Especially when you are in limbo. If it makes you feel any better, about a year ago my CEA went up about 20 points and my MO didn't start to worry until he started to see it double and triple. I know that watching it go up is scary, but I really think it's going to be ok. Are you able to talk to your MO or does he have a head nurse who can relay a message to him. Maybe he can put your mind at ease. Prayers going up to you. Sometimes all you need is your MO to explain things and put your mind at ease. 🙏🙏
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Kaption it's so unfair. Would it be a possibility to do the scans earlier, under the circumstances as to lower the anxiety of waiting? Definitely will keep good thoughts your way.
Deanna so true about the dosage. and regarding the SE's Dani prefers I don't tell her what I know, she figures if she'll get any she WILL know. She is afraid to be influenced and then thinking that something is actually going on. Love all the info you send our way. I do feel that I know so little about inner workings of Dani's stats, like I never heard of the Luminal business, I don't know her Oncotype, they might not have done it. I do have the original biopsy results and the 2nd. And have the blood test biopsy (that actually you told me about), but I am only guessing, Onco doesn't talk a lot. Well I gotta do more research.
Ziz hope you get the results soon. I honestly do not understand the waiting of 2wks or so to get results, it's too much.
Amy, so sorry you had to go through such a hard time. How low did the WBC get for you to have to be hospitalized? I am always scared of that for Dani. What's doing with your father? The last thing I know you went to visit.
Sonyarizzo wow I copied all the stuff you sent, it's great info. I have to study it. Love your attitude about the Ins. - they are so obnoxious it's scary. Totally detached from the real world. Btw, how much of the oil would you put on a jacuzzi size bathtub?
Robin this Hairomega is it good for thinning of brows and lashes also?
Jobur you write about Letrozole being so similar to Arimidex, how does one know these things? Where do you learn this? Happens to be that Dani was already on both back when, and now the doc put her back on Letr/Ibr. combo. The TM's came down so minimally maybe we should ask for Faslodex also??
Lalady if doc told you they are so similar why then the Faslodex? I do think my daughter's Onco should be maybe more aggressive, she doesn't feel any better today on 2nd cycle then when she first started and TM's inched down like a point! Worries worries.
I took out a pen and paper to write things down bcs I was behind pages, there is so much good and warm info here, so glad I was able to take the time now.
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Mom, it wasn't the WBC alone that landed me in the hospital, it was that along with cellulitis in my right arm, the arm with lymphadema. Low WBC generally means your body cannot fight infection, which is the culprit. Thankfully the cellulitis responded to the IV antibiotic over the course of two days. I started back on Ibrance at the full dose last week but I have weekly blood draws to monitor. I don't yet know how low it will go, but I'm feeling less fatigued so hopefully I'm rebounding.
I hope Dani stays at safe levels and doesn't have any critical SE's.
My father is holding his own but in the meantime, my mother has been dx with a sarcoma of a muscle in her bum. She's on treatment 20 of 25 rads, then a 4 week recovery, then in April surgery to remove it. I'll be taking the train out 5 days before surgery. The Empire Builder picks me up on Friday night and drops in Everett, WA Sunday morning - then I'll drive to their home about 90 minutes north of Everett. I booked a bedroom car with private bathroom so I don't have to share public facilities - I want my own germs and not those of other passengers. I am looking forward to that trip.
You are so thoughtful to remember about my parents - wow, what a great gift. Thank you!!!
Take Care,
Amy
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Sonya, thank you. My MO is very reassuring and supportive. I'll know more after the scan. I do plan to stay busy. The good thing is I've been feeling pretty well and pain has been under control. Grateful for that!
Amy, best wishes and prayers to you and your family.
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Hi Kaption - hope your day was better than mine getting 3 shots, and a big no to reducing Ibrance. Despite my new SE of thin/broken fingernails and some bruising, my bloodwork was good - so no reduction. They did draw a big vial of blood to check other organs + scheduled a PET scan in April after I start round 4. Found out my onc helped monitor the Ibrance study at UCLA. He said my hair loss made me the "lucky 22%". Then told me that Fas shots usually kick in at round 4 or 5, sometimes even 6. Said they saw a lot of referrals of women who were kicked off fas too early. Also said it's enhanced with Ibrance. (But note original study was Ibrance/Letrozole). Momallthe - TM inching down is ok. I hope this gives you more hope as these drugs take time to do their duty if we can tolerate them.
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So sorry for the rough day, lalady! The shots and blood work sound tough. I'm in that lucky 22% too. My MO said I could take biotin and I do believe it has helped my nails. I still wear a cap or wig, but I don't think my hair has thinned any more the past 3 months. But, really sorry about your difficult SE. Hope you get to have some fun this weekend
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Amy wow you got a tough road ahead. So much to deal with. Let's hope for the best.
Lalady thx. It's just that she is not Her2- so I am quite worried not to be wasting time on a tx that was not even proven to help her. And so is she. We could have asked for scans already, they would do it, but I really wanna give this a chance to work.
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Mom,
So glad that you found my info useful. It's a lot to take in but a lot of good info. For your size tub I would put about 8-10 drops of lavender. Make sure it is therapeutic grade oil.
I have been fighting insurance companies for so long. And supposedly blue cross blue shield PPO is suppose to to be one of the best. My MO is pretty good at advocating for his patients. My husband tires to keep me uninformed of the crap they try to pull. But it is so frustrating. They would not cover my plastic surgeon and wanted me to see someone else. All of this happened after my double mastectomy with reconstruction. They paid for the mastectomy but none of the reconstruction. So sad. They also didn't pay for any of my PET scans till it spread to my liver. It'so frustrating. But I try to not let it get to me. Got bigger fish to fry.
Right now I am on a mission to get these tumor markers down from a very scary place...and get all of these tumors out of my liver and bones. Need to be around to finish raising my daughters. 10 and 8. Praying that the good lord gives me a full 10 years so I can be here till they leave home. Cautiously optimistic. I'm sure we all are.
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Sonya thx so much. When you mean detox? what does that mean in this concept? Lavender I know is very relaxing. And yes my sil also tries to shield my daughter, but he has such a hard time, and he can only talk while going to work, bcs once there it's just cubicles so he can't discuss it. And it's mostly ignorance, they are like parrots, the don't even know what mets are.
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Hi everyone,
Had to take a break from the boards for awhile as at times I can become overwhelmed and need to get some distance from breast cancer. Been having some pretty bad days. I spiral down to a very dark place when I think of my 10 year old daughter and the possible future. Trying to stay positive and hopeful today and I hope all of you are recieving positive news andhaving minimal SE. I truly believe the women on the mets forums are the bravest women out there. Your strength continues to amaze me.
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Singlemom, so sorry for the dark days. Even though my kids are older, it always makes me sad when I have disappointing news to tell them. Our impact on those we love is hard to handle some days. This group of women on this board is amazing and does give me hope and strength. Prayers for you! Try to find joy each day.
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Hi Singlemom - I help support my family too, so I share your worries. This board rocks. If you are a reader, please take a look at "When Breath Becomes Air" by Dr. Paul Kalinithi, a Stanford neurosurgeon who passed away from lung cancer at 36. His prose is lyrical (MS in English) - he became an author after being diagnosed Stage 4 out of the gate. Uplifting words are proof that the pen is mightier than the sword, and our collective "hopes" are mightier than this disease. http://www.amazon.com/When-Breath-Becomes-Paul-Kalanithi/dp/081298840X and his essay "How Long Have I Got Left" which prompted his book. http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html
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Thanks for that recommendation, lalady. I had seen that book. I also recommend a blog called Adventures in Living Terminally Optimitic. The author has stage 4 colon cancer and is also a cancer researcher. He has a great attitude. Some of his stuff is technical, but much of it is ver uplifting.
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Mom,
Lavender is relaxing , but it also has detoxing properties to it as well. So when I mean detox I mean a cleanse of the whole body. After someone takes this bath they should go to the bathroom fairly soon after. This bath detoxes liver, kidneys and also your gut. I sometimes get itchy after from all the toxins coming out of my pores.
I am sorry that your SIL is having a hard time. My husband and I started going to therapy together so we could vent about me being sick. Sometimes as the sick person you get angry and you feel like no one understands. I have been guilty of taking this out on my husband. Men are fixers, and this is something they can't fix. So it becomes easy for them to say things like...you need to relax...or everything is going to be ok...or you need to think positive. Sometimes I want to tell my husband to shove his positive you know where.. I forget sometimes that he will be the one left here to raise our young daughters when I die. He is probably more scared than I am sometimes. I am scared of being sick and I am scared of the process of dying and how painful it will be...and I am very sad and feel guilty about all of the people I will leave behind. But he has all of that to worry about and also what life will look like when I am gone. I am glad that your SIL has you to talk to. He needs to vent. Maybe he can join a support group or something.
Singlemom
I know what you mean about spiraling down to a dark place. It feels like you have fallen down a hole and you are clawing your way up but can't seem to get out of the hole. I am so sorry that you are feeling that. I too have young children...8 and 10 and it is very scary to think about them not having a mom. Especially because they are girls. I try to talk to them about it and keep them informed on what is going on with me. It seems to ease their fears. Try to make as many positive memories as possible. I know that is hard because we don't always feel well. I have so much guilt from telling them all the time that I don't feel well and I need to lay down. It is a hard balance. Kids are very resilient. God has a plan for all of us and He is never wrong...but it doesn't make it any easier.
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Sonyar it sounds terrific. Yes, thinking of the kids is always a tough one. Dani has pretty much the same age kids. It's beyond words. I always feel it's important to reiterate to the young crowd particularly, the fact that when she felt her lump while nursing her little one, her Obgyn, a father himself, told her it cannot be anything BECAUSE she was too young. Yep, Refused to send her for Mamogram. We had to pay out of pocket to a private place where they would not need a prescr. Needles to say, Rad Doc was horrified, the same day she had aspiration, and within 2 days lumpectomy.I if we would have gone by his advice, she would be stage IV out of the gate) Ignorance is the root of much evil.
Singlemom just want to give you a big warm hug! It's tough on everyone, but doing it all it's a hardship.
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Mom. Unfortunately this disease is getting younger and younger. Doctors need to realize that. I was told by 3 different doctors that I had a fibroadenoma(benign tumor). I fired all of them. My fired breast surgeon removed this "benign tumor" and told my husband all went well, and she is 100% sure it's benign. Ha. She was wrong. I'm so sad that your daughters Doctor refused to let her have a mammo. All doctors are controlled by insurance companies. It is so sad.
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is anyone on this board taking methenamine? It is used to prevent recurring UTIs.
Thank you.
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Trying to decide if this is shingles again or a side effect of Ibrance. I have been on Ibrance for a week now and I have a tingling, painful, slightly itchy thing going on on the top of my head, in between my eyebrows, sides of nose and chin. I know that shingles is usually just on one side and last time I had it on one side of my head and around my eye area, with one dot on my other side. Maybe I just present shingles differently, or maybe this is a SE of Ibrance. Just wondering if anyone else had a side effect like this?
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Hi sonyarizzo, An itchy, hive like rash on my chest and arms was my 1st se when I started Ibrance, right after the first week. I never had anything on my face or head though. I found it helps to keep the skin moisturized and used a bit of hydrocortisone cream to combat the itch. Good luck! Hope it's not shingles.
singlemom, I think we have all been on that downward spiral at some point. Please try not to let yourself get too low, it is just too hard to come back from. You are still in early days of your stage IV dx and it takes a while to learn to live with this. I hope this tx will work well for you and give you a shot, no, a great big tumbler, of hope. How are you feeling physically? Sending hugs to you and your daughter!
kaption, Hope your upcoming scans will surprise you with some good news. If you do need to change tx, Faslodex is pretty easy for most and has been very effective for me, even before adding Ibrance. Keep busy and hang tough, the weeks will pass.
AmyQ, Hope round 2 of Ibrance is kinder to you. Best wishes on your upcoming trip to see your folks.
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Thank you, Sonya. You always know the right things to encourage!
Husband and I starting to plan a cruise- so nice to have that to look forward to!
Hugs to all who are on this challenging path. So nice to have this sisterhood.
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Kaption - Great for you and husband to plan a cruise! I'm booking a cruise to Portugal and Spain with my sister in July (in between fas/shots). Always wanted to visit the Prado museum and see an El Greco. Something to look forward to despite more SE's. Sonya - I had a rash on my cheeks during round 1 and used extra moisturizer + bought new brands to combat Sahara-face. Please feel better. Jobur's suggestion for cortisone sounds good. Please tell your onc about this. Had a gel manicure today trying to keep these new rice paper fingernails from breaking. Best wishes Amy Q. This sisterhood thread helps so much.
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Thabk you jobur and lalady and everyone offering their good wishes. It means a lot.
Amy
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sonyarizzo - I am in the middle of my 6th cycle of Ibrance. I've never had shingles but I've had fever blisters all of my life. As I got older, the frequency declined significantly. With the first sign, itchy & tingling, I start taking 1000 mg. of L-lysine two times a day and applying Abreva. It has worked extremely well for the past 10 or so years. But, since I started taking Ibrance, the frequency and duration of outbreaks has increased. I have had an outbreak in one eye and also two genital outbreaks which I've never had. (Same sexual partner for 36 years and neither of us have had it). My doctor believes it is the weakened immune system and low white cell count from the Ibrance. He recommends that I stay on the L-lysine all the time since it has been effective in the past.
I realize shingles is different but it is also a herpes virus. Unfortunately, I never had the vaccine and fear the day I have an outbreak. I do keep a prescription of Acyclovir on hand but haven't used it yet. So, the whole point of my rambling post is, watch the spots carefully because I have certainly seen an increase in herpes activity. But, I am having such great results with Ibrance that I am willing to put up with it. I do occasionally have itchy spots on my head which I believe are more related to hair loss and very itchy spots in other areas such as arms and legs. Hope yours turns out to be something simple for you.
I'd be interested in hearing if others have had increases in herpes outbreaks since starting Ibrance.
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