Ibrance (Palbociclib)
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I have to say, Deanna, I like the way you think! Very smart and knowledgeable!
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Thank you, Deanna. I plan to discuss this with him at my next appt. You've given me a lot to think about.
Diane
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lalady1 Oscar party fun!! I am sorry for your hair loss. I hate the hair loss, because it makes us look sick. but if the hair loss is minimal then I will for sure get a halo. I watched a video about it..looks really cool. I take biosil every day. It is suppose to help with hair and nails. My nails are pretty thin from my last pill (afinitor) I was on that for 5 months. I do shellac on my nails and it seems to help a bit. Just need to keep them really short.
I worry about WBC getting low because I leave for a cruise on the 17th. I take my last pill of this round on that day.
I do a lot of natural (homeopathic) things to boost my immune system so I am hoping that helps. I am starting IV vitamin C this week. Really excited about that. Also taking detox baths are very important for our liver. Epsom salt, baking soda and Doterra lavender oil for 20 min 1 or 2 times per week. I also use detox foot pads and drink dandelion tea. I have many more homeopathic things I do, if anyone is interested.
Dlb823 Your comment didn't offend me at all. I was just trying to explain the way my brain works. Very type A and need to be in control of my body, so it is really hard for me when something else is controlling my body. I like to be totally prepared for any and all possibilities. I know it causes me extra stress...but I just can't let it go.
My dr likes to call these pills targeted therapy. I laughed at him, because I knew he was just trying to ease my nerves. He knows me well and told me to stay off of google..lol I call them chemo pills only because it is easier to explain to people that way.
Hopefully we all get many rounds out of this pill. Anyone here been on it for a long time? I have failed so many things. I just want this one to work. I have a genetic mutation that makes me become immune to AI's after some time, so I am blowing through them pretty fast. Kinda scary.
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I also wanted to add that there are IV chemos that area targeted therapies as well. I know of one call Abraxane. It is kinda really sad that this isn't offered to us as a first line of defense when we are first diagnosed. Insurance won't cover it until you are stage 4. It aims at trying to kill only the bad cells. Instead, as a first line when first diagnosed, we are offered things like AC and TC, which aren't tolerated well, have horrible side effects and also kill good cells. It is never a good idea to kill good cells. I do believe it contributes to re-occurrence. It is really sad that some doctor who has probably never practiced medicine, let alone oncology, sits on his happy ass making decisions for our insurance companies, and not allowing our MO's to provide us with such things like Abraxane to treat our initial cancer. I hope this changes some day.
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Sony, Abraxane is a taxane, like Taxol and Taxotere. It's just made differently, so it's missing the harsher ingredients of the other two. The main reason it's not commonly RX'd is the cost. Taxol and Taxotere are one-third the cost, I believe. So yes -- insurance companies are pulling the strings. But when someone has a serious allergic reaction to Taxol or Taxotere, Abraxane can often be substituted with success. At least that's what I've observed here over the years. But it usually takes a an anaphylactic shock episode to Taxotere and/or Taxol for insurance co's to allow Abraxane to be substituted, which is absolutely ridiculous. Profits over people....
Here's a link about it: http://www.breastcancer.org/treatment/druglist/abr...
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dlb832 Yea it is pretty sad that insurance companies go the cheaper route rather than what is best for the patient. I have a friend who has had breast cancer 3 times. First time she did AC, second time she did TC and Third time she did Abraxane and carboplatin. She really tolerated the last one very well. She got sick and ended up in the hospital with both AC and TC. I ended up in the ER two times while on AC. It is a nasty combo. I just wish Abraxane and carbo would have been offered to me. I wasn't even given the option to possibly pay for it. Wasn't even told about it. I am sure it is very expensive, but it may have been worth it not to lose my hair and not to be so sick. I don't mean that to sound vain. I didn't mind losing my hair, I just hated looking so sick and I was so young with two young kids...it was traumatic for them.
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Sonya and Deanna - spot on pointing out the "profits over people" maxims that big phama/insurance cos. promote. I became allergic to Taxotere round 3 of chemo 3 years ago - now on Ibrance with rough SE. Good to know Abraxane may be a candidate at some point and happy insurance paid 100% of Ibrance this month due to FDA approval. I will ask for B12 shots on Thursday when I start round 3. My nails are thin too - where can I get biosil? Love this board and our ladies support.
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B12 shots are a great idea. I use the kind that dissolves under the tongue. Gives me energy. Good for immune system. I use natural factors biosil and I get it on amazon. I take over 30 pills per day. Some of my supplements are 4 of the same pill. Gives me energy but I do hit a brick wall sometimes. A lot of my supplements and essential oils are aimed at killing cancer cells. I love to mix eastern and western medicine and I found a great MD who does both. I've learned a lot over the past 4 years if anyone wants me to pass on my knowledge.
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LOL! sonya, I am the same way. When I get a bad blood draw I cry and freak out for awhile then it's time to move on. A week before scans I am freaking out little by little until the day before and then I am a blubbering mess. I am somewhat of a control freak too and all of this is SO beyond much of our control and precisely what makes it so difficult. (Besides the obvious) I saw side effects in about 5 days but nothing too bad at all except that by the third week I had low WBC which it seems caused me to have shortness of breath, rapid heart beat and feel exhausted. Also, I was on Femara/Ibrance and had night sweats for sure for about a month. So true Deanna, you CAN psyche yourself into expected SE's!
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Lol! Sometimes it is hard to be a control freak.
I am a bit concerned because most of you say that your WBC drops after your round. This is when I will be on a cruise. My dr is sending me with antibiotics just in case. I am just really hoping that all of the immune boosting things I'm doing will help. There will for sure be lots of hand washing.
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sonya,
Can you tell me what genetic mutation you have that you dont get much time on the AI's? Im not off to a good start with them. I only got 6 months out of Arimidex. Also I would love to hear more about all your supplements and oils. I curently take IP6, AHCC, and mistletoe injections to boost imune system. It must be working bc im on my third cycle of Ibrance and the lowest my wbc has been is 2.9
Robin
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Also for anyone who is concerned about thinning hair....i use Hairomega 3 in 1 and swear by it. I have taken it since i had chemo in 2011. I used cold caps with chemo and my hair thinned a lot but never lost it. The hairomega filled my hair back in very fast. I have a head of very thick hair now. I used to shed a lot of hair with every washing and now hardly any.
I buy it from amazon or you can go straight to the Hairomega site. Cost about $22 fot bottle of 60
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sonyarizzo - I just returned from a cruise a couple of weeks ago which corresponded with the end of my cycle of Ibrance. I didn't have any problems and had a blast. WBC counts were down and my Dr. also sent me off with a round of antibiotics. I have become a fanatic about washing my hands and I found the cruise line to have hand sanitizer everywhere. I don't know if you are flying or not but here is what I do when flying. I take sanitizer wipes with me and as soon as I sit down I start cleaning everything. Seat belt, arm rests, light buttons, ventilation thingy, tray front and back, back of the seat in front of me that the tray folds up against - in other words, everything i might have even remote contact with. And forget the seat back pockets, I don't touch them. I also carry a mask and if someone near me is sneezing or coughing, I wear it. It sounds nutty but I used to get sick every time I flew but haven't been sick after a flight since I started this routine (even before BC and Ibrance).
Best wishes to you and have a great and healthy trip.
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rpoole - thank you! I used cold caps during chemo too, and only had thinning and frizz, but Ibrance caused me to wear a halo hairpiece at end of round one. I will order Hairomega3-1 right now. Hi Sonya - for what its worth I flew to Utah during round one and was fine - even at altitude. Suggest mucho hand sanitizer for plane (great tips Sarah!) and avoid salad bars and sushi (per my onc) due to raised bacteria levels. Can you pm me for some good eastern medicine? I take a chewable B6/B12 from Traders Joes everyday.
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rpool1962 I can't remember the name of the genetic mutation. It is a lot of letters and numbers. You have to get the information from a tumor. I got the information form my liver biopsy. I have blown through almost every AI. I actually already blew through faslodex once before, but in combo with Ibrance we are hoping it works. I will PM you in a bit about my homeopathic life style. Just not sure all of the ladies want to hear about it. If more of you express an interest in all that I do, I can post it here.
Sarah..Thank you for the information about the cruise and the flight. I was really starting to worry about all the germs! I am going to buy some hand sanitizing wipes right now : ) Need to try to find some organic ones.
lalady...Thank you. I will for sure stay away from salad bars and sushi. I will PM you later and give you some great ideas.
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Sony, I am always interested in complementary therapies. If others don't mind, I would be interested in what you do that you feel is beneficial -- especially if you have info or links to support your choices. And as far as the cruise, I absolutely second Sarah's suggestion to have your onc RX a strong antibiotic to have on hand, just in case. With low counts, nipping something in the bud can make a huge difference.
rpoole, Hairomega sounds like a wonderful product, but I am personally leery of using biotin. Back when I had finished TC chemo, I bought and was using a biotin supplement to encourage hair regrowth, until someone on BCO suggested that if biotin stimulates hair growth, why wouldn't it do the same for cancer cells? They're both fast growing cells, which is why chemo damages them both. I don't know the answer, but the possibility makes me afraid to use a biotin product. If anyone can reassure me based on science that this is not the case, I'd love to know! Deanna
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Deanna, As far as I know biotin is perfectly safe for us. I took all of my supplements to my eastern/western(homeopathic) dr and she said it was fine. I think it may have something to do with the fact that hair and nails are healthy cells and this targets only hair, nails and skin and cancer is an unhealthy cell. It is my opinion that is can only cause good and no harm.
I started my homeopathic/organic journey over 4 years ago when I was first diagnosed. I started off slowly. You don't want to become overwhelmed. I started with organic food. I now only eat organic food. I eat a ton of veggies and I juice almost every day. Salads are great but make your own salad dressing(lemon, avocado oil, Himalayan salt, pepper, garlic salt, Italian seasoning and ground turmeric) If you are going to juice or buy juices makes sure they are cold pressed. Drink them on an empty stomach for better absorption. I also cook with unrefined, cold pressed virgin coconut oil. Coconut oil has many uses..it is easy to google all of the uses. I use it for many things. I try to stay away from red meat. Use ground turkey or ground chicken. Stay away from sugar, instead use raw honey and cinnamon.
Essential oils: learning about Doterra essential oils is a bit of a long discussion, so if you are interested in learning about the oils and the supplements, please PM me so we can have that conversation. I take 7 different supplements from them and I use a ton of their oils, mainly for anxiety, detoxing and I use their cancer protocol.
Supplements: As I said above I use 7 different Doterra supplements. 3 of the supplements are bought together and you take 4 of each of them, those are called LLV. LLV is comprised of 3 different supplements, the first one is a cellular complex, the second one is a food nutrient(multi-vitamin) and the third is an omega complex. The next Doterra supplement I take is called DDR prime. I take 4-6 of these per day. It is a cellular complex that is made from many different oils. The next Doterra supplement is call on guard..I take one beadlet per day, but if I am sick I take on guard + every few hours while sick. The next Doterra supplent is called zendocrine. this is a detoxifier. The last Doterra supplement I take is Digestzen. It helps with tummy upset. Here is a list of the other supplements I take: Natural Factors--- Biosil....to help with hair, nails and skin. Dr. Mercola--- Magnesium L-Threonate....This really helps me sleep while giving me the magnesium I need. Designs for health--- B12...I take this in the morning and it gives me energy. Natural Factors--- D3 5000IU...very important for breast cancer patients. Gaia--- Turmeric Supreme.....Turmeric is a great natural cancer fighter and this brand has pepper in it for better absorption. Ortho Molecular Products---Viracid...This is for immune health, it is loaded with things great for the immune system. Metagenic---Meta I-3-C....this promotes healthy estrogen metabolism and it is basically broccoli in a pill. Ortho Molecular Products----Mycofend...which contains 6 different mushrooms. Mushrooms build the immune system. I know it is a lot of pills. I split them up into AM...Mid day and PM. I have a big double pill holder that has a space for AM and for PM and a separate pill holder that I take with me for mid day pills. It is a commitment, but I am so used to it now.
Flouride: Flouride is a neurotoxin not meant for consumption. It is toxic to our bodies and it is a known carcinogen. I bought a counter top reverse osmosis machine for my home. It removes other toxins as well. We also do not use fluoride toothpaste. We have been a fluoride free household for over 3 years. No cavities here! Also while we are on the topic of water...start every morning off with lemon water..It has many benefits like detoxing, and it is good for digestion.
House hold items and beauty products: All of our beauty products are paraben free. We also use all natural or organic products. We use Honest Company for a lot of our beauty products, or a company called Accure. For sunblock we use Kiss My Face. For house hold items such as cleaning products and laundry stuff we use Honest Company.
Detoxing: As I mentioned before, lemon water and Zendocrine tablets both detox. I also take detox baths 1-2 times per week. Baking soda, Epsom salt and Doterra lavender. I also do a foot detox called Asako. You stick it to the bottom of your feet before bed and when you wake up it is brownish black from pulling toxins out of your body. You do it for 5 days and then take a break and then do it again. Also drink dandelion tea, green tea and essiac tea. Make sure they are organic or you will be drinking pesticides.
I believe that is all the info I have right now.I learn new things all the time. I am about to try IV vitamin C. It is an immune booster and it is suppose to kill cancer cells. I will let you know how that goes.
Anyone interested in learning more about Doterra PM me and I am happy help or to answer any questions.
Thank you for listening to all of that. I know it is a lot of info, I hope it helps.
Sonya
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Deanna, Yikes! I never even looked at it like that. I will ask my oncologist. I do know that the Hairomega has a DHT blocker (this is what makes our hair thin as we age) also has a lot of the B complex vitamins. It has grape seed extracts, niacin, and green tea to help with circulation. I am not even sure it contains biotin but will look on the label. Thanks for your input!
Robin
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I forgot to add probiotic. I take Garden of life--Once daily woman's---It doesn't need to be refridgerated so that is nice.
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I just did some research about biotin. I also want to add that I don't take biotin...I take biosil. It is my understanding that these are a bit different. Biosil increases production of collagen. According to Memorial sloan Kettering, both biotin and biosil are perfectly safe for cancer patients.
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Looking for some advice. After 9 months on Gemzar, I developed Hemolytic Uremic Syndrome and had to stop the Gemzar. It took 6 weeks to get counts back to acceptable level. Started 125 mg. of Palbociclib plus Femara on 12/22/15. After two weeks, platelets dropped to 12,000 and it took 4 weeks (even with Platelet transfusion) to get counts up to resume treatment. Started 100 mg. of Palboociclib on 2/2/16 and finished three weeks but platelets were 35,000 and ANC was 1.0, so two weeks off. During this time my marker went from 400 to 1000 and today 1400 an CT indicated numerous liver tumors. Doctor called and wants to change to Erubilin but I am advocating for another round of Palboociclib at 75 mg along with Femara or adding Fluvestrant to the combo.
Have others had to delay treatment and then have good results?
My list of treatment options keeps getting shorter so I am hesitant to cross Palboociclib off the list without giving it a good trial but I also don't want to give those tumors free reign.
Even though I am a Senior Citizen, I still have lots of reasons to keep going so would appreciate hearing others experience.
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rpoole1962 - read your post about the IP6, AHCC & mistletoe injections. Where do you get these?
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Hi ladies...wow such an informed group here...I have been popping over here to give my mom some encouragement on her stage 4 journey. Wanted to let you all know she took her first Ibrance pill last night after dinner (thank you for the information here) and it seems to have gone well. I realize quite early but I was really relieved to see she didn´t have any allergic reactions, etc. The side effects they tell you about are just plain scary and really had her rethinking taking the pill. DLB823 you mentioned the cost of Ibrance...incredibly expensive. My mom is on medicare and when the call first came thru she was told she had a $3000 co-pay. My mom told them to keep the pills....but thankfully whoever she spoke with told her of a foundation and grant which she received and so medication was sent. Ladies I am wondering what you all are seeing for a cost. We are in the Massachusetts area.
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Hi Katy - Pfizer is offering a $10 monthly copay for Ibrance! Here is the website to sign your mother up. https://www.pfizercopayone.com/ibrance-card
Also note that my insurance (UHC) added Ibrance after FDA approval and I paid nothing last month. Wishing you success and please note there are 3 dosage sizes if she needs lower than 125.
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Disappointing TM numbers from Monday. I started Ibrance/letrozole last June and have stayed on 125 without major problems. TM (CEA) made initial drop from a high of 170 to 105. Stayed in that area for 3 months. Then jumped up to 125 in December after some new bone pain and radiation. Held steady in February but just jumped up to 133 this month.Scan in 2 weeks. I was feeling so positive-not so much now.
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Kaption - sorry to hear your TM results. Has onc discussed adding faslodex shots? Rooting for you to have good scans in 2 weeks. Sometimes numbers are just numbers. Please stay positive.
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Thanks, lalady. Yes, Faslodex will be my next treatment. Although I believe I will take it without Ibrance. Not clear on that yet.
Maybe I'll get a few more months from Ibrance. My RO said you want to wait until the treatment is 50% less effective, so you don't go through them too quickly. Definitely going the wrong direction, but we'll see. Prayers!
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Kaption. I know those numbers sound scary. Do they just test CEA, or do they test CA27-29 and CA15-3 as well? If it makes you feel any better I had a clear scan while CEA was 236 and 4 months prior it was 77. Now my scan is not clear and CEA jumped to 567. These numbers can jump all over the place and they can get really high. I don't believe that just a little jump means that meds aren't working. Your scan should give you more information. I know how hard it is to wait for these numbers and scans to tell us how we are doing. It is such a roller coaster, and you feel so defeated when your numbers go up or you have a bad scan. Prayers that your scan is where you want it to be. I would also ask your MO to test the other two markers. There is also something called a circulating tumor marker test that is more accurate then the standard TM tests. Good luck and keep us posted on your scan.
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Thank you, sonyarizzo. My MO used to use CA 27-29, but switched when it seemed to not be following what was happening in scans. Anyway, I know it's about trends and not absolute numbers. The scan 3 months ago was mixed results and I was hospitalized for new severe pain in November (followed by radiation). I do have another new pain this past 6 weeks, but it wasn't so severe that I was concerned. Last scan showed uptake on T10, but no real pain there. I was just starting to relax and wanting to make travel plans, yes, lots of prayers and patience
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Kaption, are you sure that's the CEA? Those numbers sound out of range for the CEA -- more like the CA27-29, in which case they still aren't all that high. It may have been said above, but in spite of my TMs (CA27-29) always being extremely accurate, my onc once said she doesn't really worry about them unless they double. I totally get why you're upset about any rise when we so want to see them go down, but hopefully your next scan will show improvement. Deanna
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