Ibrance (Palbociclib)
Comments
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LovesM we were posting at the same time, wow - BUT she does have skull mets and tons of it.
So...the question is, could they have changed so much from the 10 days ago MRI of the Brain? it was "stable", not diminished but not larger supposedly. Crazy stuff.
Btw guys, I finally had a talk with the assistant director of the radiology place where that crazy mixed up report of the Pet/CT came from, bcs I really wanted to ask him if he really does not see something that would explain this situation. So I told him that the paragraph is comical, and words like large, better, more etc...is nonsense in this situation, that we the patient and the doctor cannot make a rational decision based on such words. So he listened and said, yes but you understand that it's extensive blah blah, and I said of course I don't expect that they should discuss every item if it's so extensive BUT he could get a few from different areas and make a decent presentation. So ppl and other doctors could actually read it and understand. I told him large is very ambiguous. He said he will go through it tomorrow and let me know.
But now I am not sure if we do have to go for an MRI if Dani should go there, or go to another place that is known to be more detailed??
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Mom- Dana F only likes scans done on their equipment and read by their radiologists. The only thing they let me do home is blood work and xgeva shot.
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MomATT, reading scans is as much an art as a science. UCLA is very much like DF -- they tell you it's okay to go anywhere, but they also indicate a strong preference for their own radiologists and truly state-of-the-art (newest and greatest) equipment. And my experience has been disappointing in the past when I've gone elsewhere, so I stick to UCLA, even though it's not nearly as convenient as getting scans done locally. In fact, UCLA actually puts a disclaimer on anything they read from an outside facility.
I so wish you could find an onc and medical team for whom you are not constantly trying to fill in the gaps or "missing" information. Dealing w/mbc or having a daughter who is dealing with mbc is stressing enough without having to do that too!
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Deanna exactly, I feel worse for my SIL bcs he works so hard, he is the one that deals with the Ins. Co. and today we were on the phone a lot, bcs we had to discuss Dani's issues. I'll be honest, that is exactly what I said to him, regarding the meds, I was back and forth with the docs office for the last 6 days, i send an email, they send back 3-5 hrs later and we still don't have it resolved. To be honest, for sure some of it has to do with my personality. But in short, my personality metamorphose BCS i was down this road so many times with so many relatives, and with Dani. Making sure what are the interests of the docs. I am a bit cynical, definitely it has prospered over the years. This particular Onco is not part of a large Center, which in a way I like, bcs he doesn't have to please anyone, but then...how many ppl he discusses with? I know for sure he has an older Onco that reigns in the place that is very well regarded.
I am constantly thinking what the next step is. LovesM yeah, regarding the scans, I gotta think, is it better this place where we could actually speak to the Doc Radiologist, or the other place that we will get more details but will probably not have the cell# of the Radiologist.
I am sorry one more thing, Xgeva are you on 3 mos or...Dani used to be on monthly, then now Onco thinks he will keep her 3mos. he is concerned with dental issues? Hmm, maybe, but which is more important??
How are you guys doing?? I do try to look at something funny on the net from time to time. Love.
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Mom, it should not be up to a radiologist to interpret Dani's scans for you. Quite frankly, I'm surprised that he even took your call, and having his cell phone number seems to me like trying to fill a gap that shouldn't be there.
Why is Dani's onc concerned about dental issues? Is there any evidence of a problem, or is he possibly (I don't know) basing his decision on research showing it's best to cut back after a certain number of doses to head off possible future issues? Again just my opinion, but if he suspects dental issues might be brewing, she should be evaluated by an oral surgeon -- preferably one who is familiar w/bone strengthening drugs, like Xgeva. Again, the benefit of being at a comprehensive cancer center, where you can find those experts.
I'm not following why you had an ongoing issue with getting meds authorized. Was that the fault of the onc's office or the insurance company? The latter often can't be avoided, but there's no excuse for inefficiency in a medical office.
I personally fail to see the benefit of an onc who works mostly on his own. In the case of the first surgeon I used, that scenario was a recipe for disaster. Does Dani's onc have a special interest in breast cancer? How many mbc patients does he have? Does he attend all the major medical conferences? I'm just curious! (((Hugs)))
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Ok, from the bottom up. The reason that we were attracted to his practice is that he will mix treatments that regular Centers won't. Mets is his thing. He is following in the steps of his mentor. MBC yeah, but not only, a lot of pancreatic etc..He does not give up easily, at the other major Cancer Center she was in, they had these puppy eyes, and kinda saying well there is not much more we could do for you. But, yes there is a lot of concern about being here, only that maybe he would do more than an average place.
Something did go wrong with the authorization, I am at lost as to what. You are absolutely right, that the Ins. usually does the delay, but not this time. My SIL was in touch with the Ins and they kept saying they waiting for this and that from the docs office. For this type of mix of tx for someone that was already on H/P they want the doctor to write up like an essay and then the director from the insurance has to approve or not. I will send them an email in the AM again, and see what's up. It's so hard, bcs I don't wanna fight with this one person that takes care of this,bcs she is the one that always puts the meds through. But the doc. Agh.
No she does not have dental problems. She just saw a terrific dental surgeon a few weeks ago, he did a thorough check on her, even had a special MRI done,bcs she had pain in the mandibular area. So Deanna are you taking Xgeva monthly? Then I would tell him tomorrow that we prefer the monthly shot.
So that is what I am trying to ascertain, that it's more important to go to a place that has a template that they know that they will be more detailed to begin with, and not go to a place that I would have to call the Rad Director to explain the secretive report. He said I shall call him anytime.
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Just checking in to vent a bit....I mentioned in my last post the problem I was dealing with concerning a fractured rib. Had a bone AND ct scan on Friday which revealed 3 fractured ribs (one of which is displaced). In addition to this, it was indicated there there are "several" other ribs that are in the process of healing. My onc is so nonchalant about everything...."just take your pain meds...they will heal up eventually".. This is not what I want to hear! I recently finished 10 rad tx that were supposed to help speed along the healing. Obviously, it doesn't seem to have helped. Is there anybody out there who has experienced a similar problem? I know that you can't do much about a fractured rib, but I'm very concerned about how easily they seem to be fracturing. Any advice would be greatly appreciated.
Also, to those who had spoken earlier about the skull mets and associated symptoms....my first symptom of mets was bi-lateral chin numbness. In fact, that was my only symptom. After waiting a couple of weeks and being told that it might be bells palsy, etc., I called my onc's office and was told that I needed to have a PET scan. The bone mets was confirmed in this scan. They actually didn't see anything in the skull, but told me that it was probably there based on the symptom. After starting tx of faslodex/ibrance, the numbness disappeared fairly quickly.
BTW, I am in the process of moving to another cancer tx center. Just can't deal with my onc and his lack of concern/communication any longer.
Hope you all have a blessed day!
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The ribs take forever to heal. Radiologist told me they will forever be a PITA.
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I just wanted to share what I thought was a really helpful post from the FB Ibrance group. I'm cutting & pasting it verbatim with the poster's permission. Will share more if she posts a response to her side note follow up question.
"Hi all - just wanted to share in case anyone else is interested (like I was) - here is a description from a molecular and cell biologist w/extensive experience in cancer biology on how Ibrance works. I've been communicating w her via email about my case specifically. "Ibrance specifically inhibits activity of enzymes CDK4/6 that is absolutely essential for cell division, any cell type. Cancer cells have to divide and multiply, obviously, to produce growing tumors, but the rates of division are different between different types of cancer and even within the same type of cancer . Still, in general, most cancer cells divide faster than majority of normal cells. This is why inhibiting CDK4/6, key enzymes in cell division, works more or less selectively to prevent growth of tumors. However, even though many normal cells (muscle, brain, heart etc etc) do not really divide, there are notable exceptions: skin cells, intestinal cells and in particular blood cells, or, more precisely, the cells in bone marrow that give rise to all blood cells. These divide very often, every 2-3 days, to continuously replenish circulating blood cells that have a short life span. This is why you may loose blood cells, both white and red, while taking Ibrance."
Side note - I've also asked her her thoughts on efficacy at lower doses since I know that's a hot topic too. I'll share once I hear from her on it! Love and strength to all!"
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Thanks Deanna!
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Thanks for copying the post. Also note Ibrance caused hair loss in 22% of trial patients because hair follicles are some of the fastest growing cells too. "Hair loss occurs during chemotherapy because it targets all rapidly dividing cells—healthy cells as well as cancer cells. Hair follicles, the structures in the skin filled with tiny blood vessels that make hair, are some of the fastest-growing cells in the body." So that helps explains why me, Kaption and others are wearing hair pieces after Ibrance. funthing - hang in there, not everyone loses their hair on Ibrance.
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Maybe that's why my scalp is so tender. I love Ibrance and thank the lord it is working!!
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Hello All,
I am just beginning Ibrance (125 mg) and Letrozole for Stage IV IDC in left breast with metastasis to my Sternum. This was a cell, small tumor that resurfaced after plastic surgery/inserts (prob developing for several years)! I see that this pairing is part of the Paloma 1 trial, yes? I'm at Stanford and feel good about my care. On top of this they found a benign meningioma, size of a Jelly Belly, in my head (upside is it's not related to the BC--thank goodness!), but likely a result of the Proton Beam treatment (read: maximum rads in that area of my head) I had in 1988 for a Chondroid Chordoma (let me tell you, I can get 'em!). As for that lesion, I can have it Cyberknifed off the planet in a month or so. Going forward, I have lots to rely on with this treatment, so I'd like to know all results and experience from anyone in the forum (side effects, length of treatment, etc). Thanks to all and best wishes for strength in all of you.
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I have also kind of effects on my fingers, not numbness, not tingling but pain if I want to hold anything or want to make fist. It started slowly with the middle finger of right hand, increaaed intensity and speared to other fingers. If I make fist or any work needs to hold things, fingers get locked and is very painful.I am on Ibrance since August 2015 and the effect emerged October 2015. From March the left hand fingers are also now effected. I tried cold and hot therapy with ibuprofen 600 mg/day.
Wondering any one on Ibrance experiencing such effects. If so what is the remedy if any, please let me know
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I am on my 2nd week of Ibrance/Femura. My side effects are really only being tired but yesterday my head started itching like crazy. Has anyone else experienced this?
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I never experienced itching but my scalp gets very sore. Like your hair has been in a pony tail .. that type of feeling.
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thank you for your post Deana. I am very interested in what you hear about the lower dose.
Sunder wood, my scalp is also very itchy and I am loosing hair. Onc said lost hair due to letrozole???
I have also noted new marks showing up on skin and discolorAtion on both arms. Doc said she doesnt know why this is happening, but does not think it is concerning.
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LovesMaltese--I get that same scalp pain but it comes and goes. Hair loss is an se of Ibrance and also Letrozole I thought. Double whammy!
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Ladies, the earache is better for Dani. But tomorrow is another day, and there are many reasons the numbness and the tingling on a partial side are there. We have to look of the many options, doc really wanted it to go away on it's own. When she wakes up tomorrow, we'll see what the next step will be. it could even be the C vertebrae pushing on a nerve, the mandibular( I know she had something there).
Thank you everyone for your efforts in helping out.
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Welcome Lauren! Sunderwood - hair loss is very likely from Ibrance, 22% in the study had hair loss, including me. My scalp itched some and then shed during cycle 1, so much that by round 2 I needed a hair halo. Here is a link to their site. http://halocouture.com/ The fall is easier to wear than a wig and lighter. singlemom - please report hair loss to onc. It's likely Ibrance - so you may be joining the "lucky" 22%. Any other ladies with hair loss? Momall - that hand issue does not sound good, Ibrance can cause neuropathy (or increase what you already may have), please share with onc. http://www.rxlist.com/ibrance-side-effects-drug-center.htm
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Hi ladies, I just finished my first week of Ibrance (100mg) and have gotten 4 mouth sores already. I had them with chemo, too. I had a migraine over the weekend, also and now a headache, with some blurry vision. All stuff that I can deal with as long as it's working. I have to have a polyp removed and a D&C, my GYN is confirming with my ONC to get it scheduled.
I too, have had some hair loss, not too bad. Also, today, I have a very itchy back. And I do have a couple of red spots. Such strange side effects. I just hope my ONC doesn't think I need my Ibrance dose lowered.
I don't post much, but I read all your posts and they are all very comforting and informative, thank you everyone for sharing
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Hi luvmyfam - warm welcome to our group. Curious why your onc started you on #100mg? Was he worried about liver enzyme issues with Ibrance? Mouth sores are a common SE and can be treated with magic mouth wash, and a few other products. Mine disappeared after a few cycles. http://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071
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Hi Lalady, thank you for the welcome. He said he wanted to start me on 100mg to see how I tolerated it. He and my MO from MD Anderson conferred and planned the treatment. My tumor is relatively small and I only have a single met. My CBC was all in normal range, so I don't know why they chose that.
The mouth sores aren't too bad, surprisingly. I was just surprised how quickly they came on. I put Kanka on them and it protects them and helps them heal quickly.
Have a good day everyone
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Hi guys can anyone explain why it's not necessary to remove the nodes with cancer and check the tiny skin nodule sternum . I do not have mammary nodes appearing. Only three in the axilla and tiny 1-2 8mm or less pectoral region. Plus the tiny ant. Chest wall mass. Very anterior and small.
Isn't it essential to remove a large portion of this cancer to see if my markers go down . What about the borderline menopausal issue. Freaking me out her2-,then + then - and -.
Also I never had BC on this side.
I'm very itchy on the Ibrance. I keep thinking I've exacerbated my skin mets.
What happens when and if you stop ibrance does it ecellerate your cancer.
Deanna I think I'd rather figure out what they did about molecular cage treatment? Why we can not figure out what freq. And how many h20 molecules are in cancer cells , move the cancer and destroy it. Just remembering a past post. When times were more simple and my cancer didn't have a mind of its own yet.
Lol. I thought I was stressed then we'll this sucks.
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I have a question. Seeing MO or NP next Monday.
I've had a double mastectomy (about a year before mets were discovered) and they checked a sentinel node on the right ( the side of my second bc) All nodes clear. All my mets are in the bones.
Is it possible to have cancer in the underarm nodes now? I have one little lump at the front of my right underarm area-pretty much where the sentinel node was taken. I think it's new in the past couple months. Can lymph node involvement happen after all breast tissue is gone??
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Hi,
I'm following this post. I have had facial numbness, my bottom lip and chin -- both sides, and numbness to left scalp. Onc. did an MRI /Ct of head and spine also a Pet.They did not see anything. I know I have tmj and wonder if I've done damage to the eustacian tube because my ear feels full on the left side and my hearing goes wonky. I now have pneumonia, which is making all my symptons worse. There is also a trageminal nerve that can get inflamed from tmj. Anyway, I'm eager to hear what Dani's doc says. I've been living like this for months. I really hate this f-ing disease.
Rachel
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Yeah, Rachel I know. They mentioned to Dani about TMJ, but she doesn't have a bad hx of it, so it would be really reaching out. Maybe the mandibular (even for you), she did have a lesion pressing on it, but it's not confirmed. What are you doing for the pain? That's even worse the pain, she said she could deal with the numbness as long as she could eat, talk, smile...Dani was so disappointed, first she was dealing with not the most desirable results from her scans, it was a mix bag, so it threw us for a loop, with progression with something stable. And just when she was coming to terms with that, she starts this numbness and tingling.
Today, they did another MRI(I did not see the report yet), I was told it would be some kind of MRI of the facial nerves, anyway, preliminary is that they don't see any relationship to what's going on with the issues she is having. Tomorrow he will look in more details. So yes, in a way it's great, no BIG lesion pressing on a nerve, but the bottom line is they can't tell what's going on. Doc is saying, if they can't find a special cause for it he will attribute it to Ibrance? Even if she is already holding on the 4th cycle, he said yes. I will call Pfizer tomorrow, in their site they say it is a possibility but I wonder how many ppl had these SE or they just wrote it in to cover themselves.
I will tell you tomorrow what genius thing the radiologist and onco comes up with k
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Kaption, I am new to this group but you should see your onc. Breast tissue runs now your torso and into your armpits and up to your clavicle area. Call your onc and specifically tell the staff you are a bc patient with a new lump under your arm and need an appt ASAP.Best wishes.
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Kaption, Unless all of your lymph nodes were removed during the mastectomy, I'm sure it is a possibility. That being said, having a swollen lymph node doesn't necessarily mean it is bc. Glad you are seeing your mo on Monday, hope it turns out to be nothing to worry about. Sending good wishes.
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Thanks jobur and ihatelimabeans. Checking on this Monday
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