Faslodex + Pablociclib(Ibrance) treatment combination -
Comments
-
Thanks! The low platelet idea was pointed out to me by the lady who drew my blood today and noticed my bruises. I will talk to the onc's office about it. Just weird as I've not had this until now and I just finished cycle 8. Strange.
0 -
Hello Ladies! I am new to this site. I really appreciate all of the information on Faslodex + Ibrance. I am having a terrible time with my mind. I know you all must be feeling like I am, but my question is how do you overcome the feeling of doom. I worry the medication won't work and I'm reaching out to all of you for some thoughts on how to deal with this. I have been to Dana Farber and I like my oncologist that I see, but I can't get over the feeling of being alone and as I read all of your posts, it seems like you are all doing well and have a good mind state. Any suggestions would be welcome. I know it is one day at a time, but projecting is my problem. Thank you all in advance for any thoughts. I am new to the site and I don't think I have filled out the treatment and dx in my profile and I didn't put a photo on, not really great at the techno stuff. This weekend has been one of the hardest for me. Sometimes I feel I just need to talk to someone who is going through the same thing I am. It is so scary to me! Thanks in advance.
0 -
PhotoGirl -- are you recently diagnosed? The first few months everyone, and I mean everyone, gets the same feelings you do. Usually once you realize you are not going to die today, tomorrow, next week or next month, you can get back on a more even keel. Then as the drugs slow down the cancer time will pass and you'll feel even better.
Think of it this way: there are many drugs to try. If each one lasts six months, you have five years to live. Right? That's a long time. If you can convince yourself it is true (and it is), the feelings of doom may lift some.
A couple of suggestions: first, the DFCI has social workers who specialize in helping newly diagnosed people. Your onc should have suggested an appointment; if he or she did not, ask for one.
Second, ask for an anti-anxiety med or an anti-depressant. Nothing wrong with a little (or a lot) of chemical help.
Did you check out the thread called Life does not end with a Stage IV Diagnosis?
Life WILL get better, I promise you. It'll just take some time. And you HAVE time.
Edited to add: PS -- WELCOME!!
0 -
Hi Photogirl. Join us on the Stage IV Fitness thread. It is impossible to feel you have cancer after a good hike. As pajim points out, you aren't going to die tomorrow, so you might as well enjoy yourself and do your best to stay well.
>Z<
0 -
Hi pajim and zarovka,
Yes I am newly diagnosed. September started the scans, MRIs, and lots of blood work. I went to Dana Farber for a second opinion which was exactly what my local MC wanted me to do. My tumor markers were around 260 and my MO at Dana Farber said that they would spike once I started the Ibrance and Faslodex. So now I'm on monthly shots of Faslodex and the Ibrance. I will check out the Social Worker that they said they had, I think at that point I was so numb and didn't even hear half of what they were telling me. For me now, the anxiety is hard, I have been on Ativan and tried Celexia but it was awful on my body. I guess I will go today and see what else they can suggest. I will check out the other threads you suggested. Thank for your input. I am so happy to find a site like this that has so many ladies dealing with this.
Zarovka, thanks for the thread. I took a long walk yesterday, seemed to keep my mind occupied and I felt so much better. Thanks for you of your suggestions.
Anita
0 -
Hi Anita, So sorry you have to join our club, but glad you found this forum. It helps so much. I remember very well how devastated I felt the first months after being dx'd stage IV. Please try to remember that it gets better with time, and you DO have time. None of us (with mbc or perfectly healthy) knows how much time, and that is one of the difficult things to wrap your head around. Once I realized I didn't have to try to do anything extraordinary and just tried to live my life as best I could I started to feel better. Getting to a point where living with mbc is part of life but does not take over your life takes time. Fas/Ibrance is a good tx that may work for you for many years, but if not, there are many other tx's to try. Same with anti-anxiety and anti-depressant meds, hope you are able to find the right one soon. It sounds like you are feeling pretty well physically and those long walks are good medicine for both body and mind. Take care.
0 -
Thank you jobur. It appears that we are on the same treatment plan except Arimidex. Thank you for the advice. I try everyday to overcome the shock, and finally have started a new antidepressant. How do you feel on the Ibrance? I had to get my second round reduced to 100mgs due to low white count. I had a second opinion at Dana Farber in Boston and they agree this is the latest best treatment for this condition. I am so thankful I found this site, I need ladies like you to hold onto so I can muster up the courage and get rid of the fears. It sounds like you are doing well. I'm not sure how long it takes to know if treatments are working, but I'm sure that because I have only finished my second round of Ibrance and am now on monthly shots of Faslodex, it might be too early to tell. Although, my pain in the hips and back and ribs has almost disappeared! I'm hoping that is a good sign. One question I have and maybe you know the answer or someone else reading this thread may know, can you travel being on Ibrance? I do wildlife photography and am scared to go on a plane with germs. I need to find out if anyone else travels or what they do to prevent sickness.
Thank you again jobur. I can't tell you how thankful to everyone who takes the time to write in. I hope I get to that stage where I can help others with these new fears. Keep in touch and you take care too!!!
0 -
Anita, Many of us have traveled while on this treatment. I will begin cycle 3 of Ibrance tomorrow. My DH and I spent 10 days in Hawaii last month. It was 2 weeks after cycle 1, and my counts had still not rebounded enough for me to start cycle 2. (My counts went way down and, like you, my dose was lowered to 100 mg. beginning with cycle 2.) My MO gave me a prescription for antibiotics, just in case I got sick. I took the pills with me, but I never needed them. I did take some precautions on the plane, like wiping down the tray, armrests, etc with antiseptic wipes, but no mask or anything. When I returned, my counts were up where they needed to be, and I started cycle 2, healthy as a horse. I feel pretty darn good on Ibrance and Faslodex. I hope this treatment kicks cancer butt for you.
Lynne
0 -
Anita, I do the same thing Lynne does, wiping down anything I might touch on a plane with antiseptic wipes. For an upcoming cruise (since cancelled for other reasons), my UCLA onc had suggested stopping Ibrance a week early (depending on timing), to give my counts a chance to rebound. And last year my local onc wrote me an RX for a really strong antibiotic (something I'd never heard of but when I looked it up was used for pneumonia) that I took with me on a trip "just in case." As it turned out, I actually did get sick on that trip (probably when a man who towered over me walked by and sneezed droplets that literally rained down on me -- yuk!!!), and it was great to have it with me to start on right away.
From past experience, I think buffets can be one of the worst places to pick up germs. I've also read that menus can be filthier than toilet bowls. In the future, I'm going to avoid buffets and/or carry little washable cotton gloves for added protection, although neither protects us from a chef or kitchen staff person who might be sick and sharing their germs. At this point my biggest travel nightmare would be getting seated next to someone on a flight who is sick and coughing. We can always ask to move, but not sure anyone else would want to sit in that seat either!
0 -
Hi Anita - welcome! I started #12 round yesterday at @100 - doing pretty well. I take Ibrance at dinner, since it's my biggest meal. I work in the film biz and use my miles to upgrade to business class, and I have been to Europe and Vancouver this year - plus just got back from ABQ for work. Please wipe down common areas on planes where possible and avoid salad bars and raw fish - too much bacteria per my onc. I'm with Deanna on avoiding buffets too. I've been eating more vegies, less meat, less sugar and more smoothies and finding that works for me. Settle into your routines as best you can right now. FYI I am headed to Germany and Austria on a cruise in December. Very happy to be seeing Vienna again which is one of my fav cities. Please post your treatments and dates so we can help you more. (())
Claire
0 -
Good Morning ladies! Thank you all for the suggestions. I was worried that I would not be able to leave and go anywhere on this medicine. I will take all of the great suggestions and work with them. I will start my 3rd cycle next week and it seems to have minimal side effects so far. At least I now that you are all living and traveling.
Claire, I finally figured out how to get my info on my page. Thank you all for your helping me out, since this is all new to me. Still having a little trouble dealing with the mental issues, but hopefully that will get sorted out soon. Have a good day and keep in touch and I will do the same. So thankful they have a pill like this!! Has everyone had good results since they have been taking it? Anybody see any improvement? I'm still waiting to see, I think it is too early. Talk to everyone soon and again, thanks for getting back with the tips!!
Anita
0 -
I'm with Deanna. I've probably been on 6 business trips (airplane) this year, plus three pleasure trips with two to go. I bought a pack of Wet Ones and wipe down the area around me on the airplane. Sometimes people look at me funny but I don't care.
That said, every two months I been picking up a cold. Like clockwork. Sigh. The first two were really nasty but the rest passed quickly. I'm going to try to avoid it this month, but at the bridge tournament last weekend EVERYONE was sick. Purell every round?
Don't let this disease make you stay home if you want to go someplace.
0 -
Oh, one more thought on travel... I'm a big fan of Emergen-C. The individual packets are easy to pack, and I make drinking one part of my morning routine when I travel. I've also picked up a little bottle of kids chewable C when I've forgotten the Emergen-C. You can keep those in your purse and eat them throughout the day.
0 -
Thank you ladies for all of the information. It sounds like I don't have to be as afraid as I have been since this all started. Are you all on the high dose 125mg Ibrance. The first cycle for me was 125mg and my white count dropped out and put me in the danger range. Next cycle was 100mg and that seemed to keep the white count stable. I just hope that the 100mg will work. Thanks again for all of your advice. With all of these tips it makes me feel like I can still live and do some of the things I love to do!!
0 -
Photogirl I was on Ibrance 125mg and then the 100mg and my counts dropped on both of those. Now I'm on the 75mg dosage and this seems to be working OK so far as far as my counts are concerned.
0 -
Proparent- That is great to hear. Heading on to my third cycle next week and my MO wants me to stay on 100mg. He feels that it didn't bring my counts down too far. Thanks for the info. Good luck!!
0 -
Hi everyone.
I'm new to this group. I somehow found this forum when I was googling information on natural estrogen blockers. Although, I haven't started treatment yet, it looks like I'll be starting fulvestrant and palbociclib for my newly diagnosed stage IV BC. (That's hard to say). I had stage 2 BC in 1998 and was treated with chemo and radiation. I was diagnosed with a new BC in 2010, stage 1, and chose to have a double mastectomy. Now it's back in my lymph nodes in my neck and chest area. I'm still in the disbelief stage right now.
I've been reading all your posts but wasn't ready to join yet. Then I read Photogirl-62's first post and I am right where you were when you wrote it and I decided to join. I also joined because it seems that you all have positive attitudes and I truly need that right now. When I was diagnosed the first time, I was young with very small children and when I found a young women's BC support group it helped me tremendously. I needed to talk to people who were in my situation. I think this forum will help me in that same way...so thank you all for sharing your stories and all the helpful information you've learned along the way.
I welcome any suggestions anyone may have about supplements, nutrition, exercise, etc., that you add to your treatment regimen to keep your body strong and feeling good.
Thank you :
0 -
hi all! I rarely check in here but wanted to share my good fortune with Faslodex, Xgeva, and Ibrance. I'm entering my 25th month if NED. Side effects aren't bad-heck, I'd take butt shots on the daily if I had to. Best of love to you all!
Kell
0 -
Hey Beachin
I joined this site yesterday, like you having been just diagnosed with Stage IV. Already, I've been made to feel very welcome and been given some terrific advice.
I found the threads about a) dealing with dark clouds and b) your life not being over with this diagnosis very helpful. Just reading through lots of different posts also helps normalise things and gets you familiar with different terminology and treatments. This is particularly helpful for me being de novo.
Certainly, there's plenty of options for treatment out there and it's clear that many women do really well, living for many years, working, traveling and enjoying their lives. It's also clear that this community really supports each other when times are tough, as they inevitably will be with this damned disease.
It's also empowering to access the knowledge and wisdom of people here on these boards as we begin to navigate our own paths ahead. I've already ordered Bestbird's famous MBC Guide!
No doubt people with much more experience than me will be on soon to help you, but I just wanted to say hi andI'll be with you on this road that we can't believe we've found ourselves on.
0 -
Hello! MSL, Beachin and Smellimd82. Nice to meet you all. We are cautiously optimistic and fighting hard. Glad you are with us.
>Z<
0 -
Beachin, Kell, MSL, welcome!
it's not that we have this "easier" than you do, it's just that we've been at this longer. With time comes some comfort with this [ugly] situation.
Glad you're here.
Edited to add: Beachin -- there's a Faslodex Girls 2014 thread. At the top are all the tips for how to receive Faslodex without pain. I highly recommend following them. Last time I let the nurse push too fast I had a bruise the size of a dinner plate.
0 -
Hello group !
My name is Cat (short for Catherine). I was diagnosed Stage 4 Sept 21. I guess I was very lucky to be diagnosed very early. I had coccyx/sacrum pain for years (since 2012) -and was CT /MRI scanned in 2013 and 14 with nothing found except a odd bend in my coccyx. After years of doctoring with a pain management doctor I told him that the intensity had increased in June 2016. I was considering coccyx removal but that neuro surgeon wanted new CT scans in Aug-Sept. Hence the discovery of my 2 lesions ( both under 2 cm), one in sacrum, one close by in the ileum. So they F18 PET scanned me, then biopsied the tumors and got my diagnosis. My markers were normal and Calcium and alk phos were normal so I was lucky to get diagnosed so early. Since my other 2 BC diagnoses were early 2As, no pos nodes it was a shock.
I got the metastatic bonelesions treated immediately with radiation and a follow up bone scan recently says they are gone. So I am NED and starting Faslodex/Ibrance this week. Got my first shots Tuesday and started the Ibrance today.
On Thursday I had some vaginal bleeding, spotting really, which is listed as a <1% side effect usually occurring at the start of therapy. (Lucky me at 64 to have this happen while out to eat at my favorite Chineseo restaurant in khaki capris😬! ) I Emailed my MO and he wants a pelvic ultrasound. Ugh, more tests! I feel like I should glow!
I am an RN, which is great and horrible...I can understand everything... a double edged sword!
I also found out my peer group at work got layed off a week after I was out on short term disability. So when I go back I will get laid off. The good thing is I will get a good severance package. After that I will retire.
I also applied for Soc security disability and found out ( in 3 weeks) I was approved. It will start after the waiting period of 5 months.
I have a wonderful husband ( stage1 a colon cancer survivor) and four great adult kids, and awesome friends so I am truly blessed.
I also am one of two facilitators of the local breast cancer support group. It's a great group of gals I have known some since 2007. TriCounty Breast Cancer Support Group in The Villages Florida.
So I look forward to knowing each and everyone of you. As I am reading through the thread trying to keep you all in my hopelessly poor memory.
Give me a while to get acquainted and learn your names.
Hoping this Faslodex/Ibrance combo goes well and gives me a long healthy remission run with minimal side effects. I hope that for all of us!
In the meanwhile I love my horses, my mini horses, my doggies ( 3 Maltese, 2 Yorkies), my 2 Birman cats and knitting/crocheting. I am looking forward to the Holidays and enjoying my life.
Cat Somerville
0 -
Welcome Cat - although wish you weren't here. This is a savvy group who can help a lot! SE's can run from fatigue (the bad boy for many), low WBC/platelet counts, hair loss, weight loss, etc. Z has started a separate link for those. Glad you got your SSDI approved - insurance should cover ibrance, but just in case Pfizer has a $10 copay plan to help. lol on some vaginal bleeding, I had my last period after my mastectomy in 2013. Are you starting out on #125mg? Are you taking them with dinner or your largest meal? How many rounds rads did you take for your bone mets to heal? Hope you are feeling better now. NED is our best bf. (())
Claire
0 -
Hello Ladies. I have finished my second round of Ibrance. Today I had blood work and one of my liver enzymes is high. Had a Petscan in September with no findings to the liver. Only bone mets. Has anyone else experienced high liver enzymes on this this treatment. My MO wants s to see if they go down otherwise MRI. I'm just freaking out need a little advice if anyone has experienced this. Thank you so much in advance.
Anita
0 -
Hi Anita, I am only on cycle 3, and I have not (yet) experienced increased liver enzymes. but if you look at the side effects section of Faslodex.com, you will see the following:
Most common side effects
In a clinical trial, commonly reported side effects seen with FASLODEX were injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes
I hope this helps you relax a bit. If I were you, I wouldn't panic since increased liver enzymes is listed as a common SE. Have a good night
Hugs from, Lynne
0 -
Anita, my Alk Phos rose over 100 pts. the first month I was on Ibrance, but it had been steadily increasing in the previous months as Anastrozole was failing me. Two months in, it took a sharp drop, and within 6 mos. it was back in the normal range. And I can think of at least two other women on BCO who reported elevated liver enzymes. My Alt & Ast have both been up and down, but rarely out of range.
0 -
Thank you Lynne and dlb823, I had normal liver enzymes in September when this all was found out. The only high enzyme was ALK Phos. which has now come down from 160 to within normal range. My AST is 58 which is 22 points high and my ALT keeps rising from normal in September to 99 now which should be 52 at high normal. Maybe the Faslodex is making it rise, thanks for that thought Lynne. I think Tamox gave me a fatty liver, which was discovered on the Pet Scan on September 2. I'm just freaking out and not sure how to put this all in my mind. Maybe Dana Farber will have an answer, the problem is that it takes me four hours to get there so I have to plan ahead for appointments. Maybe my local MO can figure it out. I'll keep you posted and if anyone else has experienced this, I would welcome any suggestions. I just can't get my fears under control and my emotions are just terrible. Thank you ladies for helping me, I truly appreciate you and this site.
Anita
0 -
Anita, Fear is a normal part of this disease, especially soon after diagnosis. When I was diagnosed in June of last year, I thought that I would be living through my last summer, celebrating my last Thanksgiving, and maybe not even making it to Christmas. Luckily, my encouraging MO, lots of targeted research, and these discussion boards eventually straightened me out and made me realize that I could be here for a very long time. Here I am, still living a pretty normal life. Do I still have bad darks and dark thoughts? Of course I do, but not often. The worst times for me are usually when I am getting ready for scans or waiting for results. My mind goes wild sometimes and I imagine the worst. As far as your liver enzymes are concerned, I don't think you should worry. (Easy for me to say) I know that several people on the boards have experienced elevated liver enzymes while on Faslodex even though they had no liver involvement. I, on the other hand, do have liver mets but do not have elevated enzymes. Go figure! I think that a fatty liver is a benign condition and is usually not serious. Before your next appointment, write down all your questions and take them with you. Keep a notebook with you in case you think of something while you are out. Make sure you ask about the significance of the fatty liver and also whether the higher liver enzymes could be just a SE. Do not leave that appointment until all your questions are answered and you understand each response. If you cannot wait for your next appointment, give your MO a call. She or he should be willing to answer a few questions about things that concern you most.
Lynne
0 -
Thank you Lynne. I will do what you said and ask a lot of questions. I thank you for helping me with these fears. I will let you know how I make out when I talk to my MO. You sound so strong and I hope to get to that point at sometime. I'm thankful for this forum, so many ladies going through the same thing. I guess I will see what he has to say tomorrow. Thank you again, Lynne.
Anita
0 -
Anita - When you monitor these boards, a clear pattern appears. A pattern that I recognize in myself. In the beginning, when the floor just got pulled out from under you, the fear is overwhelming. Newly diagnosed patients look at their diagnostics like tea leaves that can give them some definitive answer regarding their prognosis. The underlying issue is the fear and loss of control. We obsess over these diagnostics looking for something to hang on to but the truth is that the liver enzymes might mean something and might not.
One of the greatest benefits of researching and implementing the alternative protocols is getting back a sense of control that the cancer combined with the way the standard of care is administered in this country has taken away. You can improve your odds through your choices and actions. The most important by FAR is diet and exercise but with time and research you can add supplements and alternative treatments that can tip the balance in your favor.
Anti-Cancer a New Way of Life is my favorite read any time the floor slips away and I feel myself falling again (it's a recurring thing, gets better but never stops). Working out is another strategy to increase one's sense of control and improve one's mental state. It also SIGNIFICANTLY improves your prognosis. Join us on the Stage IV Fitness Thread.
Getting second opinions and getting to Dana Farber is a critical part of the research process that Lynne referred to. We're proactive and educated patients here and we're going to do better than others because we know more. But this is a marathon not a sprint. Get that all done, but when it naturally happens. The liver diagnostics will be one of 20 questions you have by the time you get there.
Welcome. I just finished cycle 10 of Ibrance. All mets were gone, including a small bone met, after 5 cycles. I found that a lot of the Ibrance symptoms go away with time. Hoping the same for you, but give Ibrance up to a year to fully deploy. It's a very slow acting drug.
Try some milk thistle for those wacky liver numbers. I had liver mets. They are gone now but I still take 300 mg of high quality Silymarin per day.
>Z<
0
