Mar 19, 2017 08:34AM airlinegal wrote:You all are the best....thank you for the research.....the love and concern...I always feel better after reading your posts
A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Feb 25, 2015 11:51AM - edited Feb 25, 2015 12:03PM by Romansma
A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets. Anyone currently on Ibrance?
Posts 6931 - 6960 (9,087 total)
Mar 19, 2017 08:34AM airlinegal wrote:You all are the best....thank you for the research.....the love and concern...I always feel better after reading your posts
Mar 19, 2017 08:40AM JoynerL wrote:
I have just started the Faslodex and Ibrance treatment. I have had two rounds of Faslodex (2 sets of 2 shots) and have my third next Friday (the final shots of the loading dose of three sets of 2 shots each). I have 4 capsules left of my Ibrance before I have my 7 days off. SO FAR, I have no side effects, but I'm on the very first month. No side effects either from the shots (except soreness on the day of the shot and the next day) or the Ibrance. I am well aware that that may change. Good luck, my friend!
Mar 19, 2017 09:30AM PatgMc wrote:
Joy, your food is going to taste so much better after a few days off Ibrance! Eat everything you love! I pray for you and everyone else that the 21 little pills have done big work on those cancer cells! I believe in the Ibrance Dance!
Mar 19, 2017 03:20PM Micmel wrote:
Dianarose~ when I was first diagnosed we called everywhere and did all kinds of research. I am in the burbs of philly and there are a lot of great cancer hospitals in this area. My onc said exactly the same thing all the other big cancer hospitals did. The smaller hospitals follow the standard protocol of the big teaching/trial cancer hospitals. They are constantly funneling information to all of the hospitals because, they realize there are many rural areas that people don't have general easy access to the big cancer centers because of where they live. I am so with you on second or even third opinions. I started to realize I was in good hands when every other opinion was the same as my onc I see now. I just think the big cancers centers have more funding for the actual trials themselves. My onc said they are constantly sending patients to those trials and those hospitals if they truly believe that they are better able to treat someones cancer. I am pleased to have read your counts were up. Way to go! You are trooper in my book. Rest well ladies
Mar 19, 2017 07:48PM Lynnwood1960 wrote:
Micmel, I am from the burbs of Philly too, about 20 minutes south! I agree with what you said about the big Cancer hospitals working closely with the local hospitals. My onc is very up with the latest research and treatments.
Mar 20, 2017 12:52AM - edited Mar 20, 2017 12:53AM by Micmel
Lynnwood196~ nice to meet you Lynn! It's so nice meet someone in my area here. Although , I am also sorry to meet someone in my area here. We have a tough race to run. And I know there are days I have no more fuel in the tank. Ever notice the sun shines different for all us when you look at after such a diagnosis.? It's just not the same sun is it ? The breeze feels different, I actually notice everything now. I live in a heightened sense of awareness, which is the only gift I am willing to accept from this crappie cancer! Rest well ladies. ~M~
Welcome to this supportive place Heidi, hope see you here for many many years to come. ~M~
Mar 20, 2017 12:53AM JoynerL wrote:
Z, endless thanks for your always carefully thought out responses. All makes such good sense on your response to my second opinion concern: on the main purpose for a second opinion and having that person, whether first, second, or third choice, be in an NCI which is accessible and ready to step in and help in the future when really needed. For me, that will be Johns Hopkins. Others probably know your professional background, but I do not. You are so knowledgeable and articulate. Is that something you share or not to be asked?? Thanks for ALL.
Dianarose, thanks for the heads up on the rubber stamp in the second opinion visit to DF...I'll try to avoid that pitfall, wherever I go!
Nanc, there are a bunch of us "older ladies"...we're so glad to have you among us, though sad that you need to be.
PatgMc, thanks as always!!
Mar 20, 2017 05:55AM zarovka wrote:
Micmel - I would agree that getting a second opinion at an NCI center for the first and second treatment decisions is not really necessary because there is a general agreement on the treatment strategy for early MBC. Unless you are uncomfortable with the doctor, you are getting weird advice or you are dealing with some unique situation or ambiguous diagnostic results, you are likely to find a local doctor that will do the right thing.
However, after the first two lines of treatments the options get complicated, they are constantly evolving and they depend very much on the individual patient history. The NCI second opinion becomes increasingly necessary.
This is the reason I encourage everyone to get setup with a second opinion at an NCI center sooner rather than later. You want that relationship in place BEFORE you have crisis. When you are in the middle of progression or some complication, it is really hard to deal with the logistics of finding a good doc and getting in their system. In my case, I flew to Seattle with high hopes for a consultation with one of their research doctors and she was an idiot. I still need to take my own advice and find a second opinion doctor with a research hospital, but I did try and I have a short list, if I need it, based discussions with people on this forum.
I am in Northern New Mexico. My local MO is adequate for establishing the first line treatment and monitoring me on Ibrance, but she has a huge caseload and not a lot of time. At this point she is not as on top of the experimental treatment options as I am. Also I found her after going to 3 different highly recommended oncs in our area. Two of them really didn't give me good advice, were not familiar with ibrance and would not have been able to monitor me on Ibrance well. One of them is actually at our local NCI center in Albuquerque so, again, NCI centers don't always deliver. So taking the time early on to find the right local doctor and then exploring your options for NCI second opinions is critical, in my experience.
Mar 20, 2017 06:36AM lalady1 wrote:
Hi Joyner - the lovely Hope (Romansma) who started this thread passed away in 2016. We decided to keep the thread going and not "re-name" it. So glad you are not having any SE's so far. Dianarose - looking forward to you joining us soon. Stay strong, we have some of the savviest ladies here to guide and share with us.
Mar 20, 2017 07:03AM JoynerL wrote:
So sorry to hear that, lalady; thanks for the heads-up.
Mar 20, 2017 08:09AM Faith-840 wrote:
Nancy, it's does seem as if we have similar paths but I had at least 8 positive nodes back in 1992. I'm so sorry we both have to be here but my doctor tells me we can live a long time yet so we won't give in yet even though some days are still very hard both physically and mentally. In some ways it helps me to know there are others in my age bracket here as I think our challenges are bit different. I often wonder if what I'm feeling is just natural aging such as joint and muscle pain or all the lovely side effects of the meds.
Joyner, I'm again surprised to see another one of us having it come back after 20-25 years. Whatever happened to if you're cancer free for 10 years you're good for life. Not true I guess.
Z, I hope you feel lots better on the 100mg dose. I will be anxiously waiting to hear your reports. You really seem to have some weird SE's. No burning scalp here or itchy parts yet. Fatigue and muscle pain and lots of sinus issues. Someone said something a few months ago about waking up with a big mucus clog in their throat. I have that big time. My MO said it's not the drugs. How do they know, they're not taking them?
Be well everyone, as Micmel said I want us all to have very long stories even with these side effects.
Faith (in the future)
Mar 20, 2017 08:26AM Micmel wrote:
Z~ I will make it a point to continue my search for that second onc. My husband and I have two homes and one of them is outside of Baltimore, I have heard good things about Hopkins and my husband knows people who work at NIH in Maryland and has been communicating to them and double checking everything for the best trials and or any information possible. Whenever I receive a plan for treatment we communicate with them. They were kind enough to look over my scans and history. It is another reason I feel confident about the onc I have now. The recommendations were always right on target! I am like you and believe knowledge is power. Thank you for always explaining things so well. I am always interested in reading the information you consistently accurately share.
Thank you. To everyone. For this place to be just us. Rest well ladies. ~M~
Mar 20, 2017 08:31AM JoynerL wrote:
I am targeting Johns Hopkins as well. Let's share information on whomever we might find of interest there for a second opinion. I'm going to tap my doctor friends in Richmond, too, to see if anyone knows of a particularly good source. You never know who knows whom!
Mar 20, 2017 09:48AM - edited Mar 20, 2017 11:40AM by zarovka
I wish John's Hopkins were near me! I will be reading your reports from the JH doctors carefully.
Faith - I am going to dare to say that the worst of the side effects are gone on the lower Ibrance dose. I just don't know how much better it will get... still fatigue and wooziness. But that could just life without estrogen.
Yesterday was the last day of cycle #15 ... I ran 3 miles on day 20, which is not usual.
Mar 20, 2017 10:32AM Aliciastewart63 wrote:
May I recommend Dr John Fetting? Check out is bio at Johns Hopkins. He is brilliant.
Mar 20, 2017 10:52AM JoynerL wrote:
Thanks, Alicia....on it!!
Mar 20, 2017 11:33PM Micmel wrote:Thank you Alicia! 😊
Mar 21, 2017 02:27AM Dianarose wrote:
For those who did A/C did it ever make your heart feel like it is racing?
Mar 21, 2017 07:38AM Faith-840 wrote:
Dianarose, I had adriamycin,cytoxan and 5-fu in 1991. I'm not positive it had my heart racing (it could have) but I do know they watch your heart carefully on that protocol. I had several echo's with and without contrast and they measured my heart rate function before, during and after. I was left with a HR function of about 40%. It is now about 35-40 and it's considered cardiomyopathy for which I'm taking a beta blocker. With the med and regular exercise it's improving as is my shortness of breath. I hope this doesn't scare you as I've managed very well in the last 26 years but definitely tell your MO about the racing heart. That could be anxiety and not a heart problem. Good luck, this life is not for sissies but you will do okay once your platelets are good and your body gets used to these meds. Hang in there, it gets easier.
Faith (in the future)
Mar 21, 2017 08:16AM Micmel wrote:
Dianarose~ when I had the heavy stuff I had a reaction that started with my heart racing, and my throat started closing up. The next time nothing, I was very stressed out that morning before the chemo and i realize I had already had an accelerated bp because they mentioned it to me ahead of time. I had an argument with my daughter and it was on my mind. I always found that whenever I wasn't myself and had it, it effected me. I understand that you have been anxious waiting for the ibrance to start for a while. Are you feeling better after ? I sure hope so! ~M~
Mar 21, 2017 08:28AM Dianarose wrote:
Faith-day three after chemo always seems to be the worst. Will discuss it with MO on Thursday.
Micmel- glad you mentioned your throat. I have the same problem after this chemo to the point I think I am going to choke while eating . The dry mouth doesn't help. I pray I am done with it and can start Ibrance Thursday
Mar 21, 2017 09:45AM - edited Mar 21, 2017 02:24PM by PatgMc
Dianarose, you and all of us who have had Adriamyacin and Cytoxin (+ 5-FU for many) have survived one of the most difficult chemos available. Some of us have also been through one or more of the taxanes. We are all made of strong stuff! I pray that you are done with the red stinker and can move on to much friendlier Ibrance very soon. You will also enjoy the fact that you don't have to spend time in the infusion center.
Faith, I look back and am amazed that in 1994, I was never given a heart test, before, during or after FAC. Since I only had four cycles, they also never mentioned getting a port. The Adriamyacin seriously damaged my veins, since then requiring many "sticks" to access a vein in my arm. I'm so thankful to have a port now and only have to have a vein accessed when I get a PET/CT.
About seeing multiple oncologists, I'm thankful to have one who has practiced a long time, yet stays on the cutting edge. I think of him as my partner and friend on this journey and he listens and makes notes so he knows my feelings on the path we will take. (I even put him in charge of plucking out my dark chin hairs if I'm ever in a coma!) We always speak in hopeful terms about my future and he often reminds me how much cancer treatment has changed in recent times. He speaks of the great number of his patients who are thriving on immunotherapy. We each have to decide if more opinions are important to us and so far, I don't see myself pursuing that.
Z, your running inspires me! I pray that 100mg continues to agree with you; I'm betting on it! Thank you again for all your research.
Tonight I blow a kiss to Hope, our sister-survivor who started this invaluable page! All of us are going to die from something some day, perhaps MBC, maybe that proverbial bus, possibly an overdose of TV news! May we each, like Hope, do something that makes a difference for others, even if it's just with an encouraging word here. I love God's promise that he comforts us so we can comfort others in their time of trouble. God bless all of you, whatever your burden is tonight.
Love from Pat, one of the old girls (23 years and still kickin')
Mar 21, 2017 10:11AM JoynerL wrote:
Bless you, Pat...I'm sending a hug to you for your wonderful, uplifting post and to all of us wonderful, strong women who are in this together! And Pat, I want your doctor!! Does he do second opinions??
Mar 21, 2017 10:39AM Dianarose wrote:
Thanks for all your words of encouragement and hope. I have bad days and just want to give up but you ladies give me hope
Mar 21, 2017 10:54AM Micmel wrote:Dianarose~ when that happened they gave me benedryl in my pre med to lower my anxiety level and it worked really well. I also took to milkshakes. Not too thick though. I would drink during the entire cycle. Just keep my body entirely hydrated and always had to eat before or even found that during lessened the side effects. I hope you're feeling better. ~M~
Mar 21, 2017 11:10AM - edited Mar 21, 2017 11:11AM by PatgMc
Thanks for your kind words, Joyner1, and, yes, my doctor does second opinions. He's Kirby Smith with Baptist Cancer Center (aligned with Vanderbilt in Nashville) in Memphis, TN. He founded our cancer support center, Flying Colors, in 1996 and usually funded it from his own pocket. He believes that hope and the mutual support of other survivors are life-extending and healing. I was sad that the changes in reimbursement for oncology caused him to close his practice and our support center to join a hospital practice, but he remains the most encouraging of all the oncologists in the MidSouth. When my bone mets showed up, he reminded me of his patients who are approaching 20 years with the same diagnosis. Each month at my check-up I run into one of them who is 18 years out. She's been on and off chemo or AI's all these years but has been on Ibrance for more than a year. I have every expectation that many of us here will continue to thrive and High Five each other on our anniversaries. And I just saw a report on Oncology Business Review that the third drug similar to Ibrance had good results. Progress!
Maybe all of us here will some day crawl into bed and die from nothing when we're 100! (You better assign someone to pluck your chin hairs!)
Mar 21, 2017 11:45AM zarovka wrote:
thanks for the reminder to stay away from TV news. I'd take chemo and a lobotomy first ...
Mar 21, 2017 11:54AM - edited Mar 21, 2017 12:02PM by Micmel
Pat~ well said, well said. We all have to dance in life. We Just don't know what song yet. You're all strong ladies. Another day of the battle has been fought. Rest well ladies.
I have to agree about the hard chemo and have also had 4 AC/ and 9 abraxane, And it was viscous, still battling neuropathy and total exhaustion but do see some improvement. It does just zap you! Improvement slowly creeps in, right along with the bone pain that feels like little termites enjoying their meal on my bones. I pray to be around as long as you pat. God bless you all.
Mar 21, 2017 12:36PM lulubee wrote:
Pat, lovely words. You encourage us all. Thank you.
Mar 21, 2017 12:50PM PatgMc wrote:
Micmel, you are indeed a warrior! 9 Abraxanes!! It took a good year for that neuropathy (Taxol/Carboplatin, for me) to totally go away. If I think hard about it, I can still feel it in the ends of my toes after 4 1/2 years.....so I don't think about it! I'm finally close to having a full big toenail on one foot....fungus from chemo way back then! About your bones....are you getting XGeva shots? My onc is a big believer in giving bisphosphonates (sp?). That crazy shot costs almost $5500 a month! With the almost $11,000 for Ibrance, the scans and office visits, I have become one expensive old girl!
Micmel, may you and your tiny termites sleep well tonight! May you have at least 23 more years, my friend! I'm hoping to take Z's advice and get myself back out walking tomorrow so I'll enjoy my next 23 even more!