Ibrance (Palbociclib)
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Thank you for the welcome! I was writing you all for the first time in the waiting room for my Bone Scan. I did a baseline before Ibrance CT-Scan on the 9th...even despite a 5 month delay cancer hasn't jumped the bones yet when I saw my MO at my appt on the 22nd..That wait sucked lemme tell you......I was both shocked and elated at the news. MO said bones mets looks like hasn't moved from where it was...fracture risk still...said looked like some healing might be happening in bones...but I think Bone Scan will be accurate about what's going on there so, holding breath to get that back which will be on the 1st along with my 3rd dose of Zometa. I was worried about starting Ibrance before the bone scan, BUT MO didn't see a problem starting Ibrance a couple days before since we already know its in the bones..and 3 days won't make much difference.
You know whats silly, in spite of all that I have been through and being scared about entering the Stage 4 relm etc...one of my biggest concerns right now is sleeping. I have trouble with it. I’ve found ways to cope during the day (tea, exercise, writing, mindless tv or YouTube, the occasional Ativan) it’s the sleeping I have trouble with. I'm on Ambien right now and have been for a couple months. I've tried a whole bunch of things before hand...trazadone...melatonin...zzquil...sleepytime tea...ativan....only ambien has been able to work most the time. Anti-depressants are a no go, tried them- had bad reaction to them. I find coping so much easier when I sleep. I've worried I am dependent on Ambien, but at the same time, I gotta sleep...trying to get through the day after a night of no sleep is really hard. I've seen some mention fatigue with Ibrance....I HOPE SO...maybe it will let me get exhausted enough I can sleep more. Any tips with this? Will allowing myself more time and letting myself to get into the routine of things now that I am in treatment help?
Thank you again for the welcome, this disease while horrible has done some amazing things in my life, its brought me out of my shell and comfort zone many times...dark days are plentiful, but is it awful to say I've grown as a person because of this? Nobody wishes cancer on themselves and I'd rather learn life lessons another way but, learning not to be afraid to be vulnerable...that's big for me. I've had my heart broken many times in my life, been disappointed many times over...been afraid to trust people...I for a long time wore my heart on my sleeve, over the years I've felt it's become callused a bit, I hide in humor sometimes as well. But being at the place I am now is not the time to try to go it alone.... I know I can't...Heck, perhaps baring ones soul is the key to sleep
-Rabbit
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Hi All - I am relatively new here, but haven't posted since February, at which time I was introducing myself. I took a nice long break from the forums because I just needed to not deal with Cancerland for awhile. My husband passed away July 2018, and I started my Stage IV journey on the night he passed away when I injured my arm. In April of this year I had surgery to repair my humerus with plates and screws and a saucerization to scoop out more cancer from the humerus, followed by 5 rounds of radiation there. I have a lot of catching up to do.
I am now finishing my 10th cycle of Ibrance and just finished reading the list of side effects someone posted on the previous page and had to laugh because I think now I've hit just about all of them. Good to know others have those strange, itchy random bumps, and the mouth sores and sore mouth and gums. I just finished my first bout with insomnia last week and had been trying to figure out what was causing it. This is also the first cycle that I have felt this much fatigue. I notice that I'm just exhausted this time. Anyway, thanks for the list, so I know I'm not crazy - or alone.
I did just have my 6 month PET scan done, and all it was good. Everything seems to be settling and receding. Mild uptake in right and left humerus (right is new), and an odd spot on the roof of my mouth, where I have been having some pain. May have to wait on the next Xgeva shot to see if that will improve.
I've been busy getting ready to retire, and just today submitted my paperwork for Medicare Part B, and I am setting my retirement date for December. Can't wait! I have been doing as much investigating of Medicare as I can, but it looks like it will cost me about $10 grand or so a year. I'm on Ibrance, Faslodex, and Xgeva. I understand the copay card won't be available anymore once I go on Medicare. I did read that Medicare Part D does have a maximum out of pocket of $5000 on prescriptions. I'm hoping that is correct. Has anyone found a good plan or coverage? Unfortunately, my company outsourced us to another company, so I can't wait till 2020 to begin Medicare and will have to start it in November. I was going to sign up for COBRA also for the next 2 months hoping that my deductible and max OOP will be carried over and applied. Haven't been able to find that out for sure.
Hope you all are doing as well as can be expected. I was sorry to read about Lita. Of course I didn't know her well, but I could tell she was special. I look forward to being able to participate more on the forums, especially once I retire.
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BevJen- When I had the 8 centimeter tumor at first, I was a novice. No family history of cancers. No experience with cancer related stuff. Not on BCO yet. I didn't know to ask. We do not do ANY of those procedures in my area- Y90, cryoablation, microwave ablation, or liver surgery. We are a community hospital. Would have had to travel to get those treatments. My local onc went with systemic therapy, and even Ibrance was a new one for him. Now I know to ask, to travel, thanks to you all on BCO.
Piggy- With the slight change, for now I am going to stick with Ibrance and monitor. See, I have a plan and haven't talked to MO yet. Hahaha. But for the future I am open to a 2nd opinion and traveling for more specialized care. We will see if this liver demon continues to grow.
Meg8000- Welcome.
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Rabbit-I found that either Letrozole or Ibrance made me very sensitive to caffeine. I was a big coffee drinker all my life but I stopped and now rarely have trouble sleeping. I agree with you that good quality sleep is extremely important to feeling well and healing. Good luck with everything.
Welcome Meg.
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Rabbit, Have you tried Benedryl? I know it sounds simple, but there is no interaction with the meds. It may take a little time to fall asleep, but it works for me. My onc approves of it only she cautions to be careful when you get up in the middle of the night you don't fall, but I would think that would be true of any sleep medicine. Chris
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RadagasRabbit - I'm not having sleep issues now, but periodically I do have issues with waking up and sometimes not being able to get back to sleep. For the last 2-3 months I have not had alcohol, and I think that helps. It is too cold for summer beers, but I do miss wine with dinner. I just started seeing an ND, and need to ask her again about melatonin. I have tried it several years ago, but it did not seem to help. It seems like she indicated that it would better, taken at a different time of day ( I took 1-2 hrs before bed), maybe in combination with something, and perhaps more than 5 mg. I also tried a brand of CBD drops, with and without THC that a friend found helpful, but it did not seem to help me. This is expensive to try, and I have to travel 3 hrs RT to another state to get, so I have not done much experimenting with marijuana, CBD/THC products. Reading "Anti-Cancer Living, Transform your Life and Health with the Mix of Six" by Cohen and Jeffries. One of the things recommended is getting outside and taking off the sunglasses to get natural light for at least 10 minutes. Since my Rx glasses darken, I take them off for at least 10 minutes while out on walks.
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimadex and Ibrance prescribed to shrink tumor prior to surgery
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Welcome Meg.
Rabbit,
I take 20 mg of melatonin 1 hour before bed. I have also eliminated caffeine during the day. I haven't had any issues since.
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Thank you so very much for the suggestions with sleep, I can get myself relaxed, comfortable and cozy for sleep feeling great laying in bed, have my aromatherapy going, soft cool fan blowing on me and then unless I take an ambien I just end up like that most of the night comfortable yet awake. 30 min sleeping patches a couple times a night when ambien is not on board. Ambien is sending me to dreamland for about 6 hr tonight... I have a store junket tomorrow think I’ll try to pick up some melatonin around 20mg. I was taking it at 3mg when I tried it first and that did not work...will give it a whirl tomorrow night and will let you know if I feel like a good witch or a bad witch in the morning lol
I’ll give the Benadryl a try too another night. I had tried zzzquil which is liquid Benadryl and it did help for a short time. Almost a week on my first Ibrance cycle combo soon. So far so good! I hope one day to say I’m starting my 42nd cycle that would be awesome:) Blood check on 1st to check white count/neutrophils for Ibrance about 10 days into cycle right before Zometa infusion #3. Check again 14th. See if I need to reduce or not. Starting at 125, MO said marrow like mine that’s been through a workout might need to lower to 100, but we will see. My counts during chemo were always low. AC I was always in low hundreds 400-500 range everytime. Taxol had to be lowered after 4th dose due to low neutrophils.Hang in there my precious little bone marrow!
Hope everyone is doing well
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Hi, All-- I am back on this thread since I am "re-visiting" Ibrance along with an oral SERD in a clinical trial.
I had 42 cycles on Ibrance/letrozole from June 2015-Aug 2018 as my initial treatment--the last 39 cycles were at 75 mg...I have been off it for 14+ months and am becoming re-familiarized with the fatigue. UGH. I've had normal energy this last year or so and already I miss it! I've only been on trial for a little over two weeks, so it's far to soon to say if it is working, or what my ultimate constellation of side effects will be.
Just want to say "Hi" and lurk/post here again.
Elizabeth
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Hi Elizabeth,
Welcome back. Hoping you get many more cycles on your new combo with ibrance.
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Hi all! I've been absent for quite a while - mostly because when I get behind, I feel I need to read everything I missed before I post again and often that ends up taking days... Then I forget what I read (thanks Ibrance) and I have to go back and re-read everything. Then days turn into weeks... It's an unproductive cycle and I need to just allow myself to post without completely catching up... especially when I read about progression (Pat, Nicole) and all I want to do is reach through my phone and hug you... and also when I read of good news and I want to celebrate with you! So a very belated hug to all, including newbies - whom I also missed the chance to welcome. Philly - I did love your fashion show photos - you are such a beauty! I still need to go watch your video and I'm looking forward to that!
SO jumping in with Rabbit as we seem to have very similar sleep issues. My issue is also falling asleep... Once I'm asleep I am good and I generally don't wake up. Doesn't matter what I do, I can't fall asleep without Abien (this after trying nearly everything, as you have). I also did a sleep study and have found that I do not produce melatonin, so I don't have a natural sleep cycle. I only sleep when I'm exhausted. This is why melatonin doesn't work for me. Taking a supplement is like a drop in a bucket. I'd have to take the whole bottle! Ambien works and without it I would get so little sleep that I have remained on it. Having said that, to your point, I do think the fatigue from Ibrance "helps" for people like us.... I have actually napped since I started taking Ibrance - something I almost never did before. Even still, I take Ambien nearly every night and I'm wondering if maybe I should/could back off the dose. I take 5mg and I wonder if I could get by with half of that, given the added fatigue of Ibrance. I'm going to try that going forward. I think there are also nights when I am truly exhausted and yet, out of habit, I still take it. I should probably not even bother with it on the nights that I'm pretty sure I could fall asleep regardless.Lastly - I wanted to share my own good scan news.... I don't keep close track of my cycles but I am probably about to start cycle 19, still on 125mg Recall I had a single bone met in my rib upon diagnosis, which was radiated in Feb 2018, which is also when I started Ibrance, Faslodex and Herceptin. My July 2018 scans showed no evidence of disease (healing bone in rib only). January 2019 Pet scan was the same. This time (we waited 9 months) we had to do a CT and Bone scan due to insurance and both still show NED. So I am elated. :-)
I will turn 50 in November and I will tell you that I never thought I'd see 40, let alone 50 (!!) back when I was diagnosed with very aggressive Stage 2, node positive breast cancer almost 17 years ago. So at least for now, I feel very grateful.
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I also wanted to share that in honor of all of you, I did an educational session on Metastatic breast cancer at my company last week for Breast Cancer awareness month. I could notbelieve how many people in the building (a couple hundred) showed up to hear my story and learn about MBC. Here's a posting on Linked In about the event. That's me in the flyer and standing on the stage.
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Lauren, so happy for your results and congratulate you on your successful talk. You are a great example for us all.
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Lauren- Woohoo on the NED!!!!! Gotta celebrate the good news when we get it !!!!!!!
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Lauren,
So good to hear from you. Congrats on still being NED. Also, congrats on the session you have at your work. That is inspiring!
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Hello again Lauren welcome back. Congrats on your NED and presentation.
Tanya
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Congrats on your continued NED Lauren. I have a feeling you will be dancing with him until you're old and gray.
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Thanks so much, friends! Piggy - I pray every day that we all get to be old and gray!
Love to all,
Lauren
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Lauren so wonderful to hear your good news. Congratulations on your presentation. Good to see you dancing with NED. Best wishes. Mair
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hi Lauren!
So happy to see you’re doing so well! And also just great to “see” you here 💗 I was thinking about you and your presence was missed. I get what you mean about keeping up.
I stay off social media - so I guess this is my pseudo-Facebook world. Taking a couple of days off the site makes it so hard to catch up! Sometimes I just lurk around.
When you wrote that you didn’t think you’d see 50 when you were first diagnosed, it reminds me of me now. I was diagnosed de novo on my 40th birthday which was 2.5 years ago. I really wonder if I will see 50? However, I have lived quite a life. If I don’t make it, I can say I feel pretty much fulfilled. I have missed out on having children and being married. Not sure that if I didn’t have this diagnosis that those two things would ever happen anyway!
Also Lauren - so awesome that you are sharing your story where you work. I know that is no small feat by any means to be so public about your health. But it IS how we spread information and education. thank you for being so brave and doing so!!!
Hugs!!
Phill
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Hi everyone! I haven't been on this thread for a long time, as Ibrance did not work for me.
Felt the need to jump in about sleep issues. I couldn't sleep either, tossing and turning, where your not sure if your asleep or awake. My ONC prescribed a very low dose of Trazodone 50mg. This drug is an anti-depressant, but it's used in low does as a sleeping pill. It works wonderfully. I don't feel drugged when I wake up. Something for you to consider.
Keep dancing!
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Hi Snooky - I hope you are doing well! Thanks for sharing your experiments Trazodone - perhaps it’s will work for others. I had high hopes for this option and tried it for a month... unfortunately it did not do anything for me.
Love to all,
Lauren
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Thoughts to PatgMc today- starting the Lymparza Lindy Dance.
And to NicoleRod- cryoablation and biopsy.
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Best wishes to PatMcG and NicoleRod. In your pockets! Thanks for reminding us Candy
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LaurenH- my non-sleeping sister! Wow! I so I thought I was alone in this struggle in literally having tried EVERYTHING and finding Ambien is the only help..I'm sitting pretty on a 10mg tab, 5mg wasn't even enough...*sigh*. All this started really in the midst of AC+T Chemo, Prior to chemo, even in the break I had between initial diagnosis and chemo I could sleep ...ever since then I ran through everything like you until settling on Ambien....Im convinced the chemo did this, never EVER had problems sleeping like this, even in stressful times...Ugh, at least I have SOMETHING that grants me alittle sleep
I agree Ibrance fatigue might be good for people in our situation, I actually PRAY for it. Congrats on NED, that's awesome!! Tomorrow will be 1 week on Ibrance - 125mg. So far so good still. Been drinking alot of water. Curious how first blood drawl will be on the 1st. Looking forward to another Zometa in me at the same time that day. I could watch alittle bit of my Bone Scan on the 25th from that little screen off to the side, seeing almost your entire spine light up in places aside from all the other places is it is in my chest and ribs...and pelvis...It was hard to not jump off the scanner and scream "Ahhh!!!"...so I just did it silently inside. My entire back lately feels like a tight dull cramp alot of the time...hoping Ibrance, Aromasin with a dash of Zometa can help with this.
Cycling on!
Take care ladies!!Meg- Welcome. You sure have been through alot, you humble me. Looking forward to hearing more from you
Edited to add: I am still navigating this whole Stage 4 thing. I try to think about what Gumdoctor said to me once that as I gain experience myself with Stage 4 I will know the things to say and how to support others with Stage 4. It's kinda part of the reason I have been afraid to post in this section. I know how sensitive I am with this whole thing and I really dread saying the wrong thing especially since people are dealing with very serious things here, I desire to say the right thing. So, If I say something stupid, please discard it and me. I am a newborn baby deer trying to walk this path.
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RadagasRabbit -- I know exactly how you feel about fearing to say the right thing. It's even worse in my case because I'm one step removed from Stage IV -- I don't have it, my wife does. What I will you tell you is that I absolutely love the ladies on this thread. I hate being here, but the folks here are overwhelmingly helpful and supportive of each other. They're not overly concerned about people saying "something stupid" or not. They have bigger fish to fry than nit-picking words.
All I'm saying is, you should really feel free to post whatever questions, concerns, issues, side effects, etc. you have on this thread. This diagnosis is a scary thing for patients and their families. I couldn't imagine going it alone. Family and friends who aren't going through this can only be but so helpful, but I've found everyone here extremely helpful, and I'm sure you will too.
BTW -- don't be surprised if your neutophil/white blood count is pretty darn low on that first blood draw. There are lots of women here (most?) doing well who dropped down to 100mg or 75mg including my wife who just started Cycle #5 and is doing well on 100mg with some shrinkage after her first scan. Best of luck and keep posting.
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Happy to be your sleep buddy, Rabbit. My issues with sleeping have been going on since I was a child. I distinctly remember laying there until 2 or 3 am as a kid while my family slept. Then I was of course impossible to wake up in the morning... my poor dad had that awful job.
My best sleep ever in my life was those 7 weeks of radiation during early stage. I felt like a normal person, falling asleep by 11 or 12 without anything to help. Having radiation for life probably isn't a good solution to this problem though.And like Mike said - please don't worry about posting the 'right things' - this is a stress-free forum. We all have enough stress in our lives!
Pat McHopeful and Nicole - holding you both close today.
Love to all,
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Ok ladies I just came from my MO appt. So here is the update.
My onc wonders if the slight increase in the size of the liver met could be a fluctuation in "scar tissue". ??? So she is going to order a PET scan (if the insurance company will agree to one--have denied PET in past, but now we have documented increase in size). She said that would show activity of the liver area in question. She said if we do not get much info from the PET, we will keep the treatment the same and rescan with my routine CT in 3 months again and see if it increases again.
We are not changing treatment for now. She did talk about the potential next treatment for me. A PARP since I tested BRCA positive in F1 studies 2 years ago. So PatgMc I may join you in the Lymparza Lindy Dance someday. But for now I am still on Ibrance ( on cycle 22 right now ).
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That's good news Candy. So glad you're still doing the ibrance dance with us.
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LaurenH so proud of you.....Candy good news....Yeah!0
