Ibrance (Palbociclib)
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Good luck PPAP! I know you are feeling anxious and I hope your scan results are encouraging. You will be one of the first of us, I think, to have film results. I hope this med has knocked the beast down!
Welcome, lindatwo! I am second line, having been on Faslodex for four years. My husband's work insurance has paid the bill for Ibrance- I am just paying 4.90 for my monthly Letrozole. I know I am very lucky that way and hope my luck doesn't run out. Just be sure that the doc's office fills out the specialty pharmacy forms with "Stage lV" in the "Stage of diagnosis" question on the form they provide, and not your original diagnosis. My insurance initially rejected my claim because the office wrote, correctly, "Stage 1a" in the blank, and the pharmacy/insurance company didn't bother to read the paperwork attached that included my mets diagnosis- just rejected it as "not appropriate for stage." While my official stage is and always will be Stage 1a in the medical records, I do have metastasis, and that is what needs to be communicated at the outset. This is a misunderstanding among the various professionals, and can really mess things up if not understood. They never questioned the fact that I had already been treated for my mets. Anyway, glad you found us!
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Good Evening All! Finally got in to see the Integrative MD. As promised, I am thrilled toshare his insights. I thought he was very knowledgeable and inspiring. He helped with the last part of the triangle to get back to ultimate health.
1. Exercise: 20-30 minutes of cardio 5 times/week
2. Andrew Weil's Anti-Inflammation Diet. (Can be found on the Internet)
3. Pearlady, he totally agreed with your MD. He wants me to continue with Vit C, Ashwagandha and Astralagus. He wants ONLY high grade supplements like Solgar, Gaia, Solaray.
4. Cancer killing imagery meditations. I have always done this at bedtime for at least 60 minutes. It helps me sleep well, and he agreed.
Those are the highlights, I hope it helps you all also. Best to all. Myra.
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hey Carolyn,
Another Carolyn here.
. Finished my first month on Ibrance and my platelets tanked - 15k! Required a platelet infusion. Curious how low anyone else is going with WBC and platelets?Thanks all!
Carolyn
Oceanside, CA
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Thank you Myra, I think I will e-mail my doctor and see if he will re-consider Ibrance. Did your doctor's office or insurance company do the foot work to get you the Pfizer card or did you do that on your own?
I am so thankful for this site and all of the help I have received over the years from everyone here. Even though I rarely post, I frequently check in to see how everyone is doing and to get new info.
About the hair.........yes I can deal with losing it if I know that is my only alternative, but I just remember how LONG it seemed for it to grow back, I hated wearing a wig, but hated the way I looked without it. I have a very small head, so scarves and turbans just make my head look smaller. I considered getting a liner, but it is very hot here in Nevada. Ah well, one day at a time!
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sandilee,
I am glad I found you too!! Thank you for the info on insurance, I will be sure to talk to the office staff at my MO's office if my doctor agrees to try Ibrance. My insurance company helped me with getting Afinitor through CVS specialty pharmacy.
I am a little confused about staging. I always thought that once your cancer had metastasized to more than one area that you were stage IV. I've never quite understood the "a", "b" part of staging either. Maybe you can clarify that for me?
I am wondering how your hips survived 4 years of Faslodex! Although I think it was the easiest treatment I've ever had, my hips took longer and longer to recuperate after each injection. It seems like it takes the whole month to finally start getting over the soreness. Years ago when I was in the hospital for 2 weeks receiving injections every 4 hours, my hips finally got numb and stayed that way for a couple of years! I'm wondering if that eventually happens with Faslodex.
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Hi everyone, I got back from vacation (Italy) Sunday and took my first Ibrance that evening. So far, so good, I think--I've had a cold or something since then, but my onc didn't think it was related to the Ibrance after only a few days so I guess I just caught something traveling. It's not fun, but what can you do? At any rate, glad to be adding the Ibrance to the letrozole and hoping for some good results.
Myra, I had the nose thing, too, for the first couple of days. It seems to be better now, though.
And lindatwo, Ibrance is my "second line" treatment and it was approved by the insurance co, no problem. I went online and got the Pfizer card myself (it's a really simple 1 minute process) but if I hadn't, my specialty pharmacy had councilors who are supposed to help navigate things like that with the patient.
Glad to hear so many of us seem to be doing well!
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linda two, why is your MO not allowing Ibrance? The Pfizer card is simple on line, as Rosestoeses said, less than a minute. Let me try to explain staging, since that is my career. I am a cancer epidemiologist, weird huh? Your stage at dx is your first line dx and determines your first line tx. Staging has now added the letter determination to add an addl line: nodal involvement, tissue involvement or type and differentiation. When it leaves the localized area (stage 1), there are other stages. Stage two tissue invasion w/o nodes, stage 3 with nodal involvement and then the big one: stage 4 with distant mets: lung, liver, bones and brain. Your original stage really only stays with you when and if your disease progresses. I hope that helps!
Rosestoeses, Italy, I love Italy. Been to Rome,Venice, Florence, Naples. One of my favorite countries.
Well, MO today for blood work and TMs. UGH!! Myra.
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"Your original stage really only stays with you when and if your disease progresses."
Myra- I think this is where people get confused. (Had no idea you were an epidemiologist! Awesome!)
Lindatwo- What my onc says is your original stage is always your stage. When you progress, they report your original stage plus metastasis, unless the cancer has already moved into another part of your body at the time of original diagnosis- then you are Stage IV . I am Stage 1a with metastasis to bones and liver.
On this board, we all talk of being Stage IV because it's kind of a shorthand for saying we have or had mets.
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Sandilee, what you say is partially correct, For all intents and purposes we are all Stage VI if you have mets in the four groups I have listed above. Oncs and registrars actually stage differently. We stage with seven subcategories, but all end with distant mets being the end of progression into the major organs and bones. Oncologists stage with only 4 subcategories. It really makes no difference what the label is, it is all the same we have Stage VI metastatic breast cancer. Some people stage with only the original dx, others with the progression.
Yes, the tx are different depending upon the stage, differentiation and type of cancer. Many different things come into play when determining treatments.Myra
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Ah- I didn't realize that both labels were correct depending on who is doing the categorizing.
So glad (not for your sake) that you're with us, Myra!
Liindatwo- My bum was really sore about a year in. Then it seemed to settle down and not react so much. I was taking Benedryl for awhile to keep it from swelling and itching, but down the line I didn't need it anymore.
I'm taking a plane to Chicago this morning with my husband for a work/pleasure get-away. I'll be wearing my cotton gloves on the plane! Hope I can stay healthy. It's been almost two weeks on Ibrance, and I imagine my counts are a little low.
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Good luck on your blood work today, Myra!!
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Sandilee, have fun in Chicago. One of the places my DH and I have on our bucket list. Will be trying the gloves in a few months too! LOL Myra
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Wow, I had a bad nightmare last night, very unusual for me - woke up yelling "help" and woke up my poor husband who had finally gotten to sleep after our electricity kept flashing on and off and failed, apparently some type of weird electrical failure in town, since there was no storm or anything.
I took my Ibrance/letrozole later in the day yesterday because I got very busy - have been taking it early, at lunch, so I am wondering if the dream was caused by taking it later (4:30) since I have heard others on these drugs were having crazy dreams as well. Will go back to taking it earlier, don't want another nightmare. Will see what the counts are next week - thanks for all the advice everyone on improving counts, will keep it in mind.
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Rosestoes I love Italy also and can't wait to get back there.
Wow Myra I had no idea you were an epidemiologist. That must be strange for you. I've not had the bloody nose but I have had blood with my bowl movements (sorry for being graphic). My onc says that is okay and is not concerned. Good luck with your bloodwork today. Glad the Vitamin C, Astragalus and Ashwaghanda are working for you. I agree about the high grade supplements. I get them from my holistic pharmacist who works with my oncologist. I like your idea about the positive imagery and am going to try it. I do meditation also, but sometimes during the week find it difficult to do as often as I should. Will make it more of a priority.
Linda I have had many other treatments as you can see and was able to get the Ibrance approved from my CVS Caremark Insurance. When my onc prescribed it he said that it may not be approved because I am Triple positive and had been previously treated. But no issues thankfully. The thing is that Ibrance has been shown to be effective in women who were previously treated. Linda I know what you mean about having hair and I am thrilled that mine has finally grown back after 18 months on Abraxane and then Halavan. But the ironic thing is that before Abraxane I was on Perjeta for a year and had lots of hair. But the GI side effects were so awful that I wasn't all that upset about losing my hair on the Abraxane and Halavan. I feel as if I'm always making a deal with the cancer devil. But I have great human hair wigs that no one ever suspected.
Hope you all have a great energy filled day and have a great weekend.
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Wow, thank you all for the info on staging......I had no idea! It's very interesting.
pearlady, I actually went on my doctor's website and there was a link to Pfizer, and I saw the application for the card. If my doctor agrees that Ibrance would be a good fit for me, and my insurance will approve it, I will go back and apply. About the hair thing.....I think it's losing my eyelashes and eyebrows that is what really bothers me. When you see these women who are gorgeous without hair, they always have beautiful eyebrows & eyelashes. Do you like the human hair wigs better than synthetic? I hear they are harder to manage. I know what you mean about making a deal with the cancer devil!! (Never heard of Perjeta, is that a chemo?)
Myra, it's not that my doc isn't allowing Ibrance. The last visit I had with him we discussed the fact that my lesions were increasing and my TM was up. We discussed different treatment options and he mentioned the fact that there was a new drug but that he didn't think the insurance co would approve it, He then suggested Abraxane, and we went ahead and scheduled chemo with the intention of discussing it again at that appointment before the treatment, (which is the 20th). I thought I would try to get his e-mail address and e-mail him before that appointment so he would have time to think about it.
Love that you guys are travelling. Hope if I can get on Ibrance I won't be tied down to the chemo chair!!
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Lindatwo, I think you should keep trying to get the Ibrance, it is much better than chemo as far as side effects (no hair loss is definitely a huge plus), and it sounds like the new drug your doctor must have been considering since it now has the FDA approval. I wasn't sure I could get it, and it took a while, but the doctor's assistants at the hospital worked with my insurance company and finally got it done for me. So if you tell your doctor that you want it (if he recommends it for you and thinks it is the best treatment for you), they might be willing to do the necessary paperwork to get it for you. I would start with asking him if Ibrance is what he recommends, and if so, show him the Pfizer card and see if his assistants can help you get approved. Good Luck!
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Linda the human hair wigs are definitely harder to manage but for my type of hair it's much more naural. Also you can use a curling iron or hot tollers. I would typically take it to be styled every 2 weeks . So yes definitely more trouble but looks so natural. I lost my eyelashes and eyebrows on Abraxane but they actually grew back on Halavan . Of course all that being said it's much better to have hair.
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Good morning! Wow, busy thread the last few days! A couple of friends have been trying to get me to meet them in Pismo for the last few weeks and I decided to go on Wednesday. We stayed right on the beach. The weather was perfect. Did some wine tasting Thursday afternoon and then went to the SLO Farmers Market that night. Wow, it was like a once a year festival, but they have it every Thursday. So many venders, bands, and the crowd was huge. Went back with our bounty, opened a bottle of wine and it was girl talk for the rest of the night. I was exhausted, but totally worth it.
One of my friends I met with is also stage IV (we've known each other for 30 years). She gave me some good pointers on recovering some of my energy. I'm refreshed and anxious to start feeling better! Sometimes it's hard to get out of a rut without getting out of your surroundings.
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Hope, so happy for you! You sound like a new woman, ready to face the day with a smile on your face. Enjoy this wonderful feeling. Myra.
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Hope, so happy you had some relaxing with friends time! It works wonders for the soul! Susan
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Hope where is Pismo? For me the beach is so healing. Sounds like you had a great time. Love the wine tasting.
Finally the weather in the NY area is warming up. Today is the first day I was able to have my coffee on the balcony. Certainly not the Caribbean but after the terrible winter we had I'll take it.
Mya I tried your suggestion about visualization meditation before bed. That and some aromatherapy with relaxing music is helping me to relax.
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Pismo Beach is in on the central coast of California near San Luis Obisbo. It has become my 'go to' place for quick getaways over the last several years. It's a sleepy little beach town that hasn't been spoiled by development yet.
I got myself some new supplements yesterday that I hope will help bring up my counts and ultimately, my energy levels. The pain seems to be back where it was the last couple of months, so I'm fairly sure that was some kind of flare. I'm also hoping that means there is either some bone healing happening or it was a sign that this combo is working. I will take either!
Someone mentioned bad dreams on this combo. Mine have calmed, but they still appear every once in a while. I still take my dose at night after dinner. Still hot flashing often. My vision seems affected too. I've been using an iPad mini and had to switch to a full size iPad because I can't see! Blurry even with glasses in the last couple of months. I've been using eye drops, but even with that, I tear all day. I remember this when I took TAC. It looked like I was crying 24 hours a day. Anyone else notice changes in vision on this combo?
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Myra- I hope your blood work looked good on Friday. Are you good to continue?
Eyes a good so far, Romansma, but it seems like our SEs can come on gradually, so crossing my fingers
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hey Sandilee, CBC rebounded beautifully including my platelets! I think the supplements really helped. Weird TMs one went up and one went down. This is really a roller coaster Started again Friday nite. How was Chicago? All this travel made my DH and I book a trip to Montreal and Quebec while the exchange rate is good. We have not been there.
Hope, nothing with eyes yet, but I have been wearing my readers more.
Enjoy Sunday all, Myra.
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Great news about your counts, Myra! Does your doc do CEA? It's the only one mine does, as the others seem to read normal regardless and CEA has been pretty reliable for me.
Still, I n Chicago , leaving this afternoon. Went to an wonderful concert last night at Symphony Hall. During the day we visited the Chicago Institute of Art, which is truly amazing! If you have any interest in art at all, it's a must-do. Best museum in the country for modern art, and every great you've ever heard of is represented.
I'm still,feeling well. My scalp is a bit itchier from letrozole, I bet, as it is drying.
Myra- so you're taking astragalus and ashwagandha? How much do you take? I have really low blood pressure naturally, so the astragalus concerns me--- but I'd love it if it saved my counts.
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the CEA went up and CA 15 went down. Both of mine are abnormal. I hope nothing changes because I have not finished one cycle yet. Got to 18 days last time. Hopefully full cycle this time. I take Ashwagandha twice daily before meals. I do bkfast and dinner. Astralagus, 2 capsules between meals and 1000 mg vit c twice daily. Today I went back to the gym finally. 25 mins, 5 miles on the bike. I was beat, but felt energized. I was a gym rat prior, but a slug for the last 9 months. The interventionist MD said a Duke study recently showed 20-30 mins of cardio/5x per week greatly improved tx for breast cancer pts, especially with mets. I finally feel like I am taking back some of my control. Myra.
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Wow, good for you Myra! Happy to hear counts are recovering too. My treadmill has been calling to me.....but so far, I've had no problem ignoring it!
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Myra that's so good! I love it that you are taking your life back. I really do. I love it. Keep it up. Don't let cancer snatch it away again. Be a warrior, and please keep sharing what you do. I just know it will be good for everyone to hear. You go girl! I'm still looking forward to your MD trip and coffee or smoothies and yackety-yacking.
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me too
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pearlady & 3Holly,
I am definitely going to call my doctor's office tomorrow and see what i can do about starting Ibrance. Then maybe I won't have to worry about the wig for now at least!
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