Ibrance (Palbociclib)
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Ginny, I've taken several whole cycles off for UTI's. Not just one UTI but a series of several in a row. When I have consecutive infections (UTI's, BV, vaginal yeast), I take time off. Just this last cycle, my new gyn (I always do what new doctors tell me to do) said I should not take Ibrance while taking Cipro because of interaction. Well, Ibrance interacts with MANY drugs. The list is endless. But my gyn doesn't know that. I just followed her orders, which she wrote in ALL CAPS to me on her portal. Yes, I should have called MO. I didn't. It was toward the end of the cycle so I took an extra five days off. I discussed this with my MO when I saw her this week. She said there are different levels of interaction and Cipro would have been fine. I've taken Cipro while taking Ibrance many times. But remember, I have this rule that I always do what new doctors instruct.
Cure-ious, I found that onclive thing disappointing, too. I'm not encouraged at all. How can these doctors try to sound so positive when comparing PFS of a few months versus a few more months?
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I used to have horrible UTIs, one right after the other. Then I heard about a prescription med called methamine hippadurate (may have spelled it wrong). The head of UCLA urology, Dr. Raz, recommended it. It has now been at least 7-8 years with no UTIs. I take it twice a day. I take it with Ibrance/letrozole. It is some sort of formaldehyde coating for the bladder that makes UTIs hard to start. I told my primary care dr and she now recommends it to all of her UTI patients with great results. Try it. Nothing worse than UTIs.
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Okay, so this sounds like PARP inhibitors may be useful for upwards of 70% of people with breast cancer! That's pretty significant when they so far are FDA approved for only about 10% of us, those with BRCA mutations.
Three of these are already on the market so, if things continues to look promising, perhaps they can be used off label.
I love every new option coming our way, friends!
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OMG, Pat, I've known this guy since he was just a young pup (student starting out in the lab)!! How wonderful!! (OTOH, this definitely makes me feel ancient...)
So these PARP inhibitors, they and others have found that the cancer does not need to have a BRCA mutation for the drug to have an effect, but it wasn't clear what the properties of the responding cancers were- in this new report they find the PARP drugs can block the action of a protein called DDX21- so for cancers that depend on DDX21, they would be sensitive to the PARP inhibitor targeted drug even if BRCA is not mutated. Apparently that should include some non-BRCA breast cancers, which is very important, because the PARP inhibitors are strong drugs!
The PARP inhibitor does not eliminate the expression of DDX21, but rather it prevents it from entering the a specific structure in the nucleus called the nucleolar compartment. Therefore, they predict that the DDX21 protein must be present in the cancer cell nucleoli in order for the cancer to respond to PARP inhibitors. In some cancers, DDX21 is not in the nucleoli, but instead is just in the nucleus, and those cells they would predict would be non-responders. They are going to do a clinical trial where they look at patient cells under the microscope and stain for the DDX21 protein, in order figure out which cancers have DDX21 in the nucleolar compartment, and which ones don't, and then see if that predicts who responds to the drug and who does not. If it all works out, then this would become the test they do in the genomic testing labs to see if our cancer would be predicted to respond to a PARP inhibitor. Overall, this study could make PARP inhibitors available to us in relatively short order (at least through a trial).
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Cure-ious, How cool that this is your friend!
My oncologist and I have agreed on a PARP inhibitor for my next treatment as I have a BRCA1 mutation. (The mutation my daughter and I have is so specific they think all who have it are related!) I've been asking about it since I first heard of the research 10 years ago, before I had MBC. I was leading a laughter workshop at the FORCE Annual Conference where a researcher spoke about this. I tucked it away in my mind and it got approved for MBC just in time for me!
I'm excited that it has potential for so many of you and for my two sisters who are not BRCA+.
My oncologist is pretty open to trying drugs off label if the science makes sense to his research-oriented mind. He is also willing to fight the battle of getting insurance coverage or free drugs from the pharmaceutical companies. Hopefully, other doctors will do the same.
Love from PatGMc
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Cure...thanks for the easy to understand post!
That is definitely exciting stuff!
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kitkit, I have tried the methenamine hippurate and I have GI issues with it, like I have GI issues with everything. I've heard of many people having success with it. Thanks for the idea. I'm not having UTI's right now. I take a combo of cranberry extract and d mannose that seems to work.
I'm glad people think cure-ious' post is easy to understand. I don't find it that easy and am still left scratching my head. I'd like to be sitting in a nucleolar compartment right now. Sounds safe.
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Jaycee, I’m happy that Cure-ious is up on information as to how medicines work, but I don’t find it easy to comprehend, either.
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thank you for your response. what type of supplements do you feel help you?
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I love that we don't always have to understand why new treatments work, just that they do.
It looked like PARP Inhibitors were only indicated for the 10% of survivors who were BRCA-positive, people who had a DNA problem, so to speak. (How's that for over-simplification?!)
Now it looks like 70% can possibly benefit. That's huge!
I'm so thankful folks like Cure-ious are on top of all this. Our lives depend on their work!
Love from PatGMc
(I'll be thinking of all of you as I speak at the Komen Survivor Luncheon tomorrow. You lift me up everyday!)
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I was just diagnosed with metastasis to the bone in two thoracic vertebrae and my sacrum. I will be starting letrozole and Ibrance soon. Do any side effects of Ibrance get better during the 7 days off?
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Welcome dutchiris
My Se’s Used to feel improved on 7 days off nownot so much. I’ve been on ibrance faslodex for 2 years now. It seems that we all respond differently due to age weight where cancer is what other health issues we have so we call it the ibrance dance. You find your middle ground and go with the flow.
One thing for sure you’ll find lots of help here
Tanya
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Wishing you well for your speech at Komen Pat!
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Hi Kitkit. So this is something people take forever kind of like a probiotic. Thats really great.
I was mentioning that I take fem Dophulus its a probiotic specifically for the bladder and vaginal tract. I had recurrent UTI's and this has kept them, and vaginal infections away. I am glad for the information about the Methamine I am definitely going to look into that.
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good morning all! I'm just starting Ibrance/Faslodex/Xgeva cycle 3, and learned that my tumor markers have gone up, not down, after 2 months of therapy. I’ve read that this happens in about 30% of cases and does not necessarily indicate treatment failure. Has anyone else experienced this?
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Good Morning. Kitma5, my TMs also went up. But I've read that dead cancer cells can cause that to happen.
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Knitma5 my oncologist told me that tumor markers can waver up and down for awhile before they start going down and not to get too excited about that. She said that what they're looking for is the trends up or down and more specifically the rate at which they're going up or down. For example if your markers went up fifty percent one month and then 45 percent the next that would mean the rate is slowing down. She said that's good too but not to be surprised to see them go up for a few months.
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Knitma5 when do you get your first scan? I am about to finish my 3rd bottle of Ibrance, I have also been on Letrozole and Faslodex and Xgeva I will get scanned end of this month (3 months on those meds).
Sorry I cannot answer your question about tumor markers because I don't follow those, I get confused enough about everything else lol so I am leaving those to the doctor...lol. Sounds like moomala answered it really well though
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Thanks for all your prayers that the luncheon speech would go well. It did and I'm so thankful. I had concerns that I'd be able to pull it off even taking a second week off but God gave me strength from somewhere!
I thought I'd just re-post what I put on Facebook this afternoon:
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"It was such a delight to speak at the Komen Survivor Luncheon today! Looking into the faces of hundreds of survivors, watching them celebrate and laugh with each other, will forever be one of my favorite things.
Getting to do that with my Amber and Lainey took it way over the top! Ken Lackey, entertainer extraordinaire gave Lains a hug and was flabbergasted that she knew the words to his songs, even Copacabana! She's such a hoot in any age group.
As she was dancing and celebrating with the survivors, she leaned over and whispered, "Like grandmother, like granddaughter, right?" Precious words!
I wasn't feeling great when we left for the luncheon and Lainey promised, "Veervee, just give me a sign if you can't keep going and I'll step up and finish your speech." Anyway, I got a second wind and made it through! I even sang an original song....Scary, huh?
I got to see friends who were part of Flying Colors way back in the beginning.....so special. One of them brought a newly diagnosed woman who was an artist friend of dear Colleen Newport Stevens, an amazing friend who worked at Flying Colors back in the day. The woman had the same kind of BC as Amber's (TNBC) so she got to encourage her. I love that circle of hope and how God brings people to who they need to meet.
Thank you, Elaine Hare and all the Komen folks for a day our family won't forget!"
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Thank you, Tanya. I am planning to continue working if possible. Do many people find they can do that? Right now I only have minimal discomfort. I have had nausea since learning of the mets. What side effects have you all found most limiting or distressing?
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Hi dutchiris! I also have thoracic mets. And lumbar and right lung. I just started cycle 4 of Ibrance and I'm still getting used to side effects. For me so far just hair thinning and fatigue along with the lower WBCs. My fatigue is starting to feel worse the first few days of my week off and I tend to get constipated the first few days of the week off as well, but many people find that they feel great on the week off. It seems that Ibrance is really unpredictable that way. I have found it quite tolerable though at the the dosage of 125 mg, in fact even the fatigue has not really slowed me down. Exercise really really helps to fight the fatigue. I walk two miles a day, stay active for most of the day, and visit PT weekly for rehab becuase I have compression fractures at C7, T11 and L4. The T11 fracture was the most impactful and I did have a hard time working then because I wasn't able to sit up for very long without support behind me or reach things etc. PT is helping a LOT and I'm back to walking daily and working parttime. Sooooo happy for you that your thoracic mets isn't causing you much difficulty becuase I can tell you a thoracic fracture is no fun!
I'm really sorry that your stomach has been bothering you. I lost a lot of weight when I was diagnosed in April because I was so distraught and couldn't eat. Once you get started on your medications, I think things will settle down for you.
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A quick welcome to knitma5 and dutchiris! And Pat - It would like luncheon speech was amazing! I’m sure you helped so many people yesterday!
Love to all,
Lauren
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Thanks for the welcome and the answers to my questions. I am going to Mayo Clinic tomorrow to see if I meet the criteria for the PROMISE Trial. If I qualify, I will have my biopsy there. I have had a bone scan, PET scan, liver MRI, and CT scans. I am scedule for a brain MRI on Tuesday
Moomala, sorry that you have compression fractures. I know they are very painful. I have helped care for patients that have them.
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Someone posted this a while back in the Fenben thread and no one really commented on it but I just noticed it and I am worried....
I have learned that these drugs are contraindicated with Benadryl, and I was taking 50 ml nightly as a sleeping aid. Benadryl destroys a pathway in the liver for processing some of the anti-hormonals.
I was taking Hydroxyzine...which I am told is like "a prescription version of benadryl"....I was taking it every night for like a month - during my 1st and 2nd bottles of Ibrance.... Also I take Claritan D every day??? Does anyone know if these 2 drugs can destroy the pathway in the liver for processing the Ibrance/Letrozole??
I sure hope Cure-ious can chime in here...
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You guys know I'm such a fan Of Keytruda having seen it do wonders for friends with other cancers. I'm convinced the right combination will bring it home to us.
Yes, the study in this article was for neoadjuvant TNBC but let's think of it as a breakthrough for BC. I'm a believer! It's a magic immunotherapy already approved by the FDA and our oncologists will be itching to use it off label. Read closely and see that it worked regardless of the amount of PD-L1 protein expression! I'm no scientific genius but I think it's huge if that marker doesn't matter!
(I'm even more pumped about this as my daughter is a 10 year TNBC survivor. Should she get MBC the range of treatments available to her right now would be limited. Hopefully, this will be approved for metastatic TNBC rather quickly.)
Say your prayers, friends!
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Thanks for sharing, Pat! I'm ER+, HER2- and have been on keytruda (in combination with some other therapies) since November. I'll be praying extra hard that my mini study of one will be helpful for all of us down the line.
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Mshar, Are you in the MORPHEUS trial? Pat's story shows that Merck is seeing the same benefit reported last fall for TNBC when combining chemo with immunotherapy, and they aren't really seeing that the response correlates with PD1/PDL1 expression. That's confusing because higher levels of PD1 expression was supposed to be the reason why triple negative cancers respond better than ER-positive cancers to immunotherapy? It's encouraging but why is this all taking so long to figure out?! I mean, if everyone on chemo should be also getting immunotherapy, why don't we already know this by now?! It seems like there is some "group-think" that goes on, where these ideas are all tested only on TNBC and excluding the ER-positive cancer, and then when they see a benefit we have to wait more years to find out if the combo works just as well for ER+...
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Pat- The PARP inhibitors are good! They are pretty good - very little SE. My MO wants me on PARP and immunotherapy. This was discussed before I knew I turned TNBC. And I don't have to have it in conjunction with chemo. Lots of great new trials out there. Crossing my fingers one sticks and works long term.
Nicole - are you taking fenben?
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Holly No I am not taking the Fenben right now. I am only on my 3rd bottle of Ibrance/Letrozole - Faslodex, Lupron and Xgeva.. I am going to wait to see what my first scan (3 months) shows. That scan should be in a few weeks. However, I am following that thread and the protocol closely because I think it is showing real potential and also because I have seen more than few women here say they only got a year or less out of Ibrance and some got less than 6 months.
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Hi Nicole,
I've been following that thread also. I had a really good response to I\L on my first scan. All of my bone Mets were resolved and the two lymph nodes reduced by 60%. I want to see what my next scan shows, which will be in Sept. I am hoping to get to NED. I also think Fenben is really promissing.
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