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 24, 2015 08:21PM - edited Dec 11, 2017 01:43PM by Moderators
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?
Edited by Mods to add Mod Note: Unfortunately, Romansma passed away in 2016. Our thoughts are with all who loved Hope.
Edited by Mods to add:
For more information on this medication, see the main Breastcancer.org site's section on Ibrance for information on how it works, who it's for, what to expect, and side effects. Also, read the latest research on the Research News on Ibrance pages.
Pfizer Oncology Together is a first-of-its-kind program for patients taking Pfizer Oncology medicines that offers dedicated social workers called 'Care Champions' to help navigate the complexities that accompany treatment, such as identifying resources to help find emotional support, and workplace transition, transportation and financial assistance.
For cancer patients taking a Pfizer Oncology medicine (e.g. Ibrance) or caregivers, please visit www.PfizerOncologyTogether.com.
For live support call: 1-877-744-5675
Posts 11911 - 11940 (16,766 total)
Apr 12, 2018 08:00PM - edited Apr 12, 2018 08:07PM by jensgotthis
CT scan is all good. No mets but I still have those pesky blood clots in my lungs so I have to remain on the blood thinners. Oh well. I'm feeing very grateful as there has been a nagging pain on my rightside lately. Bone scan is on tuesday
I'm curious, I've been on this now at least 18 months and I'm starting starting to have upset stomach nearly everyday. Anyone else have this develop the longer they've been on Ibrance? Pepcid has become my new friend
Apr 12, 2018 08:06PM Cure-ious wrote:
Congratulations, Jen!!! Great happy news about the scan!!
I have terrible problems with any acidic foods, but took myself off omeprazole. I take antacids and stay away from a lot of food at night, though I have to have the occassional glass of wine. But really, try to stop eating earlier in day, and give yourself way more time to digest the food..
Apr 12, 2018 08:15PM janky wrote:
Thank you! I know I need to just wait and be patient...Nurse Practitioner said this is 'normal' and Ibrance often takes a few cycles for body to adjust. I will keep on reading these threads and most of the time they 'lift' my spirits. Best of health and healing everyone!!
Apr 13, 2018 12:48AM time-for-a-cure wrote:
I want to comment on the “tmi”. As a 65 year old women who read the first edition of “our bodies ourselves” from cover to cover, intimacy is important to me. And I don’t think it is too much information, I think it is important information . Intimacy with my partner is very important to me and to him. Breast cancer has taken some things from us, but it should not Take this. As a mature woman I know intimacy takes many forms. It is physical, psychological and sensual. And it feeds us, or at least it feeds me. It is important to me, and if it takes some lubricant, and perhaps a little pain or discomfort, to feel that complete sense of intimacy,interdependency, and joy, It is well worth it.
Apr 13, 2018 02:22AM LaurenH wrote:
Jensgotthis - so happy to read about your good CT results! Best wishes with the bone scan!
Apr 13, 2018 04:53AM Leapfrog wrote:
jensgotthis....praying, wishing and hoping for you for your scan results.
Gracie...not more! You're having a tough ride at the moment. Sending hugs to both of you.
I'm a teeny bit worried, well maybe wondering more than worried because I've developed a cough and have been breathless for a few weeks. My tumour marker which is always high and always jumps around has jumped a little bit higher than its usual highest level. It normally bounces between 450 and 520 but has made an extra little jump to 550. We don't put any store on my tumour markers though as they're quite weird anyway and I know TMs aren't an accurate measure. I'll be having CT, bone scan and another scan I didn't catch the name of on the 30th so that will clear up the mystery. I'm sure it's nothing but I thought I'd mention it anyway. My bone scans have all been stable for the last eighteen months and CTs have always shown clear organs but those little thoughts come a creeping in the early morning!
Apr 13, 2018 05:08AM JoynerL wrote:
Time for a Cure, I agree with you. Well-stated.
Jen, GREAT news on your scans! WHOOPEE!
Leapfrog, good luck with yours; I'm betting that all is continuing to be well.
Apr 13, 2018 09:09AM lakewoman wrote:
Time for a Cure..So happy to read your comments on TMI and as JoynerL said 'well stated. ' I wondered if I had been too open.thus your comments meant so much to me..At age 78..my guy 80 this year .this intimacy is and will be a very important part of our lives.! We are both very young acting..in different ways.The grasshopper and the ant..He bought me a grasshopper and yep I found an ant made out of nuts and bolts.!!! He loves to work.for example..piled 25 cord of wood for retreat center friends this year and of course our 10 cord..I play!! summers on my jetski..and boat..and writing and woodworking projects..Enough about us but know we care about all of you..And are grateful for all of your input..Today tooth pain.and hoping for no heartburn . As someone wrote its always something but I TRY to look at the happy somethings..Like we bought a new boat last weekend..and I got my body on a mat today and played a few wii games..
Apr 13, 2018 09:50AM 50sgirl wrote:
Holy cow, Lakewoman, you and your DH are putting my DH and me to shame! I'd better get out the door and start training for a marathon or something just to catch up with you. Btw, you were not too open in your TMI comments. It is important to share information here because others will learn from the words posted and may finally realize that their experiences are not unique. Thank you to all who have been so frank and honest. I hope your toothbrush pain goes away. Will you be seeing your dentist soon?
Jen, I loved reading the good news about your scans. WOOHOO! I am hoping that your bone scan also yields good results. Those blood clots will dissolve eventually, but I am sure you want them gone now!
Leapfrog, There are many reasons for breathlessness and coughing, but of course we always fear the worst. It is hard to wait until the 30th for scans, but I hope they show stability or even improvement. If the symptoms you are having worsen, please get yourself to your MO's office to be checked out. Better to be safe than sorry as "they" say.
Hugs and prayers from, Lynne
Apr 13, 2018 11:40AM JoynerL wrote:
WOW...this could ultimately be huge.....
Apr 13, 2018 10:51PM time-for-a-cure wrote:
JoynerL - thanks for the article. Good news. Gives us more hope..
Apr 13, 2018 11:34PM Liwi wrote:Promising article Joyner, thanks for sharing,
Apr 14, 2018 09:45AM candy-678 wrote:
Hello all. I thought I would check in. I had my 3 month CT this week and, of course, I got a copy of the report before discussing results with my MO ( appointment this upcoming week ). It showed decreasing size of the liver mets and stable bone mets. I am happy, BUT, my TM's showed increasing numbers the last 2 tests. I know we talk a lot about the inaccuracy with the TM's here. Why would mine be on the increase the last 2 blood tests, but my CT show stable/improvement?? There was an area on my right lung that says "tiny 3mm nodule which may represent noncalcified granuloma though indeterminate". Could this be the start of lung mets??!!! Good grief.
Also, I told my 2 sisters the results of the CT----they know me and knew I would get a copy of the results as soon as I could. My older sister said " So the cancer is getting better and soon you will have no more cancer". I tried to explain that Stage 4 cancer is not curable and I will always have to battle cancer. I don't really understand it all myself. Why if the medicine is shrinking the tumors can they just go away and I would be cancer free?? Can someone explain why we are not "cured" at that point. And how does the cancer then grow back or move to another area.
My other sister said " now you can relax and not think about it for a while". I think I understand what she was getting at. That the next CT will be in 3 months or so and I can "chill" till then. But I don't think she understands that for me this is the NEW me. I do enjoy things. I hold down a full time job. I attend church. I continue to maintain a household. But cancer is always in the background of my thoughts-- and some times in the forefront of my thoughts and emotions.
I want to be happy with my CT results, and I am, but I don't want to let my guard down and then be told that there is progression.
Should I ask my MO about the lung thing or will he think I am nit-picking the results and looking for a problem where there is none.
Apr 14, 2018 10:48AM lakewoman wrote:
Need to share before I see Dr Monday..I been taking ibrance and letrozole for week or so for METS to lung and sternum and lymph nodes in chest.Er+ Her2 negative..PET show nodule in left breast Had biopsy week ago.. Patient portal results just came in I should have done like my guy said and waited till I see dr.Monday...Triple negative..Havent even told him he went for a walk..Pretty sure treatment may be changed any thoughts..tears havent come yet..
Apr 14, 2018 10:56AM - edited Apr 14, 2018 10:59AM by 50sgirl
Candy, Those results are excellent. Stability and decreasing size are terms we all hope for as we get the results of our scans. So, a big WOOHOO for you! I would not worry one little bit about that tiny lung nodule. Lung nodules are very common. Some go away, some stay there but don't grow. My dh's scans showed three little lung nodules three and a half years ago. They are still there and are unchanged. No one even talks about them. Lung nodules are often formed by scar tissue from previous infections, inflammation or smoking. They are usually benign and if they don't grow, they aren't cancer. With new lung nodules, especially a tiny one like yours, the usual plan is do nothing and check scan in three months. If it shrinks or is unchanged, it is assumed that it is not cancer. Lung nodules usually double or triple in size in three months. I speak from experience. I had two lung nodules (quite a bit larger than yours) and an enlarged node in my lungs in December. My MO suggested changing treatment, but I mentioned that I had just gotten over a bad cold. He let me choose, and I decided to stay on current plan and rescan in 3 months. Earlier this month, the scan showed that the nodules are shrinking and harder to see, and the node is no longer enlarged. The RO now says it was most likely from inflammation. How high are your TMs? They sometimes increase when the tumors are healing, like your liver tumor is doing. This causes tumor flare and increases the TMs temporarily. Rising TMs by themselves should not be a reason to change treatment. Now onto your sisters' comments. It is difficult to make others understand exactly what it means to have MBC. Many people assume and hope that our cancer will just up and disappear. Most of us will never be NED or NEAD until new treatments and discoveries happen. Even when cells cannot be seen, they can be "hiding out", too small to detect. Some people do reach the status of NED or NEAD and stay there for many years. Some will never seen a recurrence or progression. Hopefully, there will be more and more of us that join that elite club. The fact is, unless things change in MBC world, with very few exceptions, we will all need scans and treatments for the rest of our lives. That doesn't mean that we can't live normal, productive, happy lives. I hope this helps. Oh, one more thing, definitely ask your MO about the lung nodule. It is always right to ask about anything at all the concerns you. If you don't ask, you will wish you had. Remember, there are no stupid questions.
Hugs and prayers from, Lynne
Apr 14, 2018 11:29AM jensgotthis wrote:
Lynne, can I just say for a moment how incredibly wonderful you are. You are such an example of why these forums are so important in our lives. Your kindness, sharing of experiences, wisdom, humor, sincerity....we are lucky you are here and that there are many people on this thread and others who we could say the same of. Cure-ious, Z, and Netta, I also particularly appreciate your science/medical sharing and translations. Way too many wonderful women and men here to call out by name (I don't have momallthetime's talent in that way), but know that every voice is appreciated.
Apr 14, 2018 11:36AM jensgotthis wrote:
Candy, I totally agree with everything Lynne said. My TMs also rose when I started Ibrance and still bob up and down by 13% month to month, and I'm considered all stable and healing. Rely on your scans. I won't tell you to not worry in between scans because that's just hard to do, especially when you are new to this, but will say that your good first scan bodes well for Ibrance doing a good job on your cancer. My MO has said that it's pretty quick to tell (usually 3 to 6 months) to tell if Ibrance is going to be effective or not. As to the uncurable part, I get the same from my dad and stepmom. They tell me I'll beat this. My hope is that I'll live a long time with it as a chronic (pain in the butt) condition. We'll never be cured. The cancer is in our system and we only see it on scans when it's big enough to show up. I've learned to celebrate results like STABLE and HEALING. When my MO told me he was treating me with curative intent he meant that I would live a normal lifespan and die from something else. This MBC is here to stay, unfortunately.
So, I join Lynne in saying WOOHOO and dancing for your good news. This will be hard for your family to understand and they may never fully grasp it. So glad they are by your side though, and if you can get them to understand how great stable is then you'll all be thinking in a good direction.
Apr 14, 2018 11:42AM jensgotthis wrote:
Hi Lakewoman, I too have to read the patient portal as quickly as possible and am glad to have a little time to digest and think of my questions before seeing the doc. I'm sorry for your news but maybe this will be very helpful to know. I can't recall if when you progressed to stage 4 if you had a biopsy of your bone or lung mets or not. If you didn't, it would be interesting to hear whether your doc wants to do that so that you have some idea if you've got two different types of receptors going on or if everything is triple neg. If it's the later, then that's very helpful to know since your treatment will definitely need to change. I don't know anything about treatments when there are multiple receptor types going on. Maybe Bestbird's manual has some info? You might think about making a new thread to ask about this in case people here with experience can weigh before your appt.
So glad you already have an appt set for Monday. The weekend can be so long when you're carrying this type of news. Sending you good vibes.
Apr 14, 2018 12:19PM lakewoman wrote:
Awe ty Jen so gracious to answer so soon..Yes I had lung biopsy couple of weeks ago...mets is ER+ HER 2- to lungs etc which is what I hoped left breast nodule would be..Not meant to be..Reading what you wrote to my guy was a BIG help..esp your explanation why you look at portal is just the same as what I told him how I feel ...plus being 'old' RN makes me more inquisitive..Plus what you wrote also helped..regarding seein Dr.Mon.. last two drs visits one son there with us while he had other son from WI on speakerphone..The nearby son on vacation so because of circumstances ..that I now know about!!!this time I will have Jim on speakerphone with me
..How do I get to Bestbirds manual ??in the dark on that ..even as to what it is tytyty
Apr 14, 2018 12:58PM janky wrote:
Jen, Lynne and everyone else in these forums - Thank you! I too was kind of wondering about why we MBC'ers cannot be cured, and as I read above, I remembered that is what my MO told me, but of course there is always so much to process at appointments...I am having to delay my Ibrance cycle 3 for another week :( as neutrophils .4 at end of 1st week off, arghhh! I go for ct and bone contrast scans April 25 and will have results that day which is nice, as I won't have to wonder about them...hoping and praying for no growth, even shrinkage of my bone met. Happy weekend to all!! Janice
Apr 14, 2018 02:03PM - edited Apr 14, 2018 02:46PM by Husband11
Is the nodule in the left breast an independent occurrence of cancer? Ie, de novo. If so, and its not a metastatic occurrence (spread from the first HR+ occurrence ) , couldn't it be treated locally? If so, could it be removed surgically? Or ablated (burned away) in some way, cryo or electro? If it's not part of the metastatic process, and nothing has yet spread from it, it shouldn't be life threatening at this point in time (edit: but should be addressed separately if possible).
Apr 14, 2018 02:41PM Tanya_Djamila wrote:
You have lots of questions now for Monday. I like husbands 11 queries.
I always look in patient portal and cry in the shower and then brave face it out until I talk to onc.
I pray for the best results. Thank god you have a support system.
Apr 14, 2018 03:04PM NettaGER wrote:
Jen: we are all in this together, therefore I believe that the best we can do is to support us the best way we can. In my case it is scientific knowledge, others have different virtues e.g. being able to say exactly the right words at the right time. Everyone is adding to the great puzzle of help and support.
One word on analytical accuracy of tumor marker analysis: the variability of the ELIZA test being used for determination of the tumor markers is about 10%. This means that a stable tumor marker concentration in the blood may still show changes of 10% from blood draw to blood draw, just because of the analytical testing method.
Apr 14, 2018 03:29PM candy-678 wrote:
Thank you 50sgirl and jensgotthis for your comments. It is nice to have this site I can go to for advise, wisdom, and true understanding. My TM's don't sound so bad compared to others who have posted here (some posted in the hundreds). My first set 7 months ago the CA 27.29 was 49 (before Ibrance ), dropped to 37.5 a couple of months after starting Ibrance, then went up to 44.6, then 46.1. The last one of 46.1 is almost up to the baseline 49 before I started treatments. Also the lung nodule was mentioned in this CT but not in the previous 2 CT's. I have not been sick with anything and I don't smoke. I will ask my MO about it at my next visit this week, but we will probably have to wait for the next scan in 3 months to see if it goes away, stays stable, or God forbid grows. I will go on with life, but the concern it will grow will nag at my thoughts.
Apr 14, 2018 03:45PM lakewoman wrote:
Okay you are right the triple neg was found on PET in left breast..yes independent of mets..And this nodule in left breast at 6 oclock so small..I bet they can do what you are suggesting..I just didnt want to go off ibrance and letrozole.that might keep mets at bay....TY all so much.More Monday..ty
Apr 14, 2018 04:56PM - edited Apr 14, 2018 04:57PM by PatgMc
With all due respect to the doctors and the gazillion articles that say MBC will always be with those of us diagnosed, I have to stand up and say, "It's not necessarily so!" As I've often written here, I have friends who are many years out from finding BC mets. They have no evidence of disease and are not in treatment. If it can happen for them, it can happen for you and for me. I won't give up on that hope and I pray that somewhere in all of you there remains a burning hope that you will die from old age someday.
I'm not going to be surprised if some of us are cured by Ibrance. I often think of my friends who had a rare kind of Leukemia for which a drug (Gleevec) was developed more than a decade ago. One friend was on the trial at MD Anderson and one got on as soon as it was released. They both are alive and well and guess what? The drug proved to be a cure and more than half the people who took it have been able to stop and remain disease-free. That can happen with Ibrance and some of the other new drugs too.
I'm a believer!
Love to all of you. Congratulations on good scan results!
Apr 14, 2018 07:47PM Cure-ious wrote:
Hi Lakewoman Sharlene- It's too unclear what is going on with you, your doctor will explain it all and you have lots of good questions. I just want to add that triple-negative cancers are more responsive than ER-positive cancers to immunotherapy combinations, and doctors at Dana Farber had said they have only seen a few, but it seems like cancers that used to be ER-positive then mutated to triple-negative (which might or might not be your case) might be the most responsive to checkpoint immunotherapy..