Ibrance (Palbociclib)
Comments
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Wandering - 😳It’s only October! 😬 You and I have appointments on the same day. I’m up for blood, MO visit, double barrel butt shot and a femur X-ray. The fun never ends
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RK2020; I'm up for blood, chat with my oncologist, and chemo. The nurses are so so great, The best part - they bring me an ice cream while they drip poison into my body. I'm planning on driving myself - I hate for my husband to drive me and chill for the 2 hours while I'm in the clinic (no visitors allowed). If there's too much snow left he probably will drive me. We get our shopping done while in town also so it's not a completely wasted trip. We need to pick up our power boat while in town - had it winterized this past week. I'm unloading our camper but there is a foot of snow on it so I'll just wait for the big meltdown later next week. This is a record snowfall - even for Montana - and early too. I guess we should be glad we are still alive to get this done.
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Hmmm, I also went from ER+/PR+ to ER+/PR-. No one on my medical team HHS’s commented on it, though.
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Wow Wandering!!!!! Having to travel 100 miles for bread !!!! How far do you drive for your cancer care?? I just changed to a new cancer center that is a 2 hour drive-one way. I worry that some day I will not be able to handle it--- I am alone in all this. And I do worry that the weather will be bad when I need to go. But I live in Southern Illinois so we do not have the winters you do. Last year we didn't have any snow. Ice could be a problem for us more than a large snowfall.
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Katrose and Sunsine99...thanks for your replies. I am going to mention it to my doctor at my next visit and see what he says about it.
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Candy 678: We keep a very close watch on the weather (use Wunderground website). If the forecast is for bad weather we get a motel room in town and stay over. Use it as a mini holiday - go out to eat as a treat. This seldom happens but we are careful and do that if needed. We spent 18 years in Park City, Utah, which has an annual snowfall of around 300 inches, so we know how to drive in the snow. We purchased excellent studded snow tires and put those on our Subaru 4 years ago. They are unbelievable. We cannot legally put them on until November 1 so they are in the garage right now. We are 3/4 mile from I-15 so the only problem we have is between the house and the interstate, which is kept in good shape. Just something else to be concerned about. We need the water so the snow isn't all bad.
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Wandering- I love winter. I love snow. Hated that we didn't have any last winter here. Ice is another story. I guess I am used to living in town--- rural town of 15,000 residents with smaller towns all around and the landscape is corn fields. But, I am 5 minutes from a Dollar Store. My church is 10 minutes away. My old cancer center was in town, 10 minutes from my house. I am still not used to having to travel 4 hours round trip to go to the doctor (MO). And I do worry how it will look when winter/bad weather gets here. Or when I get more ill and do not feel like making the 4 hour drive.
You take care. And enjoy the snow. And enjoy the "mini holiday" if you need to stay overnight.
Hugs.
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Oh! I wanted to chime in about side effects. My head feels like its detatched from the body these days, sometimes I check and I'm like yep, still there, I'm just really that forgetful. Want to ditto Jackie on the reading but not commenting sometimes, sometimes the words just aren't there, even when I want them to be. But like Jackie I think of you ladies all the time, every day in fact.
I wanted to give a run down of my experience and echo a few others so if anyone else out there is experiencing these things perhaps you can rest easy and no calls are needed to Dr. Google.
I wanted to echo Jackie's comment of sore throat. At 125mg I did have not just mouth sores but sore throat and this is on the tablets, I never had a sore throat on the capsules. I have noticed little if any mouth sores or sore throat on the 100mg tablet however. Its a good thing and a scary thing because you wonder, if I'm not getting certain side effects is it working kinda thing. But boy am I getting some others tho. Nausea like Spookiesmom, mildly on the 125mg tablets, none on the capsules.
Now....Constipation, holy cow is this an issue on the tablets. Even on 100mg. I am convinced a coffee enema wouldn't be enough some days and some days i actually pray and say, "Oh please let me go today, and don't let it be too much that its the Big D, and please don't let it be too little that I feel like an overstuff vacuum cleaner bag". It really is that delicate of a balance. I'm no longer a walking whoopie cushion 24/7 which is kinda heartbreaking because it was my one amusement in terms of side effects, the only patient who could beat me gas wise at one point would be the croaking bullfrogs in the colonoscopy recovery room.
BevJen!! Its good to see you! I hope your recovered/recovering well from you ablation and that it obliterates that jerk of a growth and has you back to dancing again soon. Even without the pep, sometimes I try to be thankful I can still step, perhaps even mambo across the floor on a really good day. A little hip wiggle makes me happy on other days. It is what it is somedays. But happy to see you visiting the Ibrance dance floor for a checkin
RK- Mwwahhh!
Holy cow look at those bees! Its kinda like a swarm only not docile like most swarms in trees are when they are in the middle of finding a new home. Its amazing what those little things can create and the massive owie they can cause. I too had no idea bees could be that aggressive, wow. With the way 2020 is playing out it must of felt like a plague being unleashed. Crazy stuff happening this year. We get a blue moon on halloween too. Not another one for something like 30 yrs they say. Anything else wanted to happen in 2020?Wandering, it must be so peaceful and quiet where you are. Tucked away from the craziness in a sense. I bet you see some awesome wildlife. Have you seen anything particularly interesting? Are you in mountain lion territory? I am in bear territory, black bear territory. In 12 yrs I still haven't seen one yet, always show up in areas above or below us although apparently a big one was spotted near the mailboxes a month or so ago in the afternoon. And to think I used to routinely walk to the mailboxes....eek. Not anymore. No way Jose.
Take care ladies!!
PS: If I miss anybody on shoutouts, no offense, as I said, head not screwed on, feel like I need to go find it often. 0 -
Had to log in and share a funny story. So, like clockwork everytime when refilling my hormone therapy and my 2 palliative medications I always end up having to call back to get my sleeping medication refilled because they wont refill it with 2 pills left, I have to have 0 pills before they will do it. Stressful.
Anywho, today was groundhogs day, went to pick up my stuff this weekend and yep, the one I need most for QOL isn't there. So had to wait til today to complain.
So I call in to get my refill. Anybody ever swallow wrong and get spit going in the wrong direction and your hacking a lung with someone on the other end of the phone. Well just before I was asked which medication I wanted refilled and before I could like a smartass say "The one you guys always forget". I had something go down the wrong highway. I'm sitting there hacking in the middle of a pandemic. Trying to get words out without coughing. The guy on the other end paused for a long time and then asked me if I needed to be transferred to triage and if I'm experiencing any symptoms besides cough. I said I swallowed spit the wrong way, I'm good.
This makes me chuckle a bit. Same as the time I was dusting the dashboard of our vehicle while bored waiting for hubby and did my typical 4 to 6 consecutive sneezes in response to the dust scaring the crap outta a fella talking on a cell phone sitting on the hood of his car next to me. You woulda thought he was under machine gun fire how quickly he darted into his car and shut the door looking at me. I wanted to roll down my window and say "Dust! but he looked a bit traumatized. This may sound hypocritical but I hate how fearful we've become as a society, simple, innocent things make people afraid or suspicious now. It just adds to an already heavy burden.
I'd be curious to hear others share funny things that have happened lately dealing with cancer, side effects, life or otherwise. Sometimes a tickle to the funny bone really does help me, I think laughter can be excellent medicine
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Love it Rabbit. Hahahahahaha. Sorry I do not have a funny story to tell. But, Yes, we need a good laugh. Good to see you post, seems like you haven't posted in a while.
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Rabbit - 😂😂
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RadaGastRad: Yes it is peaceful here, especially with the snow which tends to absorb lots of sound. We had three mountain lions strolling down the road several years ago. A neighbor said it was a mother moving her cubs. We haven't seen them again. We do get bears here (black bears). We had one in the back yard - got into our trash. My husband invited him to leave which he did. A neighbor (rookies here) left their trash sitting out for two weeks. I called their attorney and told him what was going on (bears are getting ready to hibernate for winter and are hungry). Magically the trash was picked up within the hour.
If you want to walk I would suggest you get some bear spray. It works. If you cannot get some locally you should be able to order some off the internet (Amazon?). Please learn how to use it BEFORE you need it.
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You people seem to need some real news. I had a Pet/CT on Oct. 6 and saw MO on Oct. 21. He has been hinting around about a med change for a few months/scans. Just to be a pain, I said, "like what?" (I knew exactly what he had in mind.) He put a stack of blank paper on his lap and started writing the options. 1. Ibrance with Faslodex 2. Afinitor with arominsin 3. Xeloda. I was sitting across from him. I could read what he was writing. (Not that I needed to. I already knew what he would suggest.) He was writing UPSIDE DOWN. Very fun party trick but may or may not be appropriate for the setting. I was impressed. I asked about side effects of each and he played down all of them, as usual. I talked to my onc nurse right after that (Xgeva shot) and she said let's do the Faslodex right now. I was in one of those moods, like whatever. So I started Faslodex last Wed. No more letrozole. The shots were NOTHING. My nurse is just really skilled. She does have pain in her hands at times. I think all nurses end up with some kind of pain somewhere. Back, knees, hands. I've heard many stories. So I'm on Faslodex now. Not a big change but a change. He told me about the loading dose in two weeks and I could not help myself. I said, "you think I don't know that?" I need to go over to the Xeloda thread and tell them that he said hand and foot syndrome is mostly cosmetic. I did not say, tell that to my friend who can't walk. See? I do have some self-control.
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Jaycee- Good to hear from you. So... still doing the Ibrance Dance, but with Faslodex. Can you tell a difference yet in the "tin man" side effects from the AI's? How much progression did you have?
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It's only been in my system since last Wed. I don't have "tin man" as much as "old lady." I doubt if that is going anywhere. I AM an old lady. My lung met is chugging along slowly as usual and they saw two new bone spots. I always thought my lungs would get me but it may be my bones.
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Jaycee- What scanning do they do to see your bone mets? I had CT's (and now going to do MRI of abdomen, I guess) (see my posts on the Liver Met Thread) and they always mention the "sclerotic" lesions on the spine, but do not say anything about any new ones. But I hurt more in the butt bone-- pelvic bone, I guess. The bone you sit on/ under the butt cheeks. I wonder if the scanning is not picking up on new bone mets. They seem more concerned about the liver versus the bone.
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Rabbit, you cracked me up this morning! Thanks for the laugh. Boy, do I get the BM prayer. Haha! And your line about the bullfrogs in the colonoscopy recovery room nearly caused me to fall off of my chair! I have trouble getting up off of the floor, so I would have had to call my husband to help me up. He would have seen me crying, and thought that I was hurt. I'd have to choke out, "No, I just read something really funny!"
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Jaycee,
I've been on the Ibrance/Faslodex combo since August 2019. I don't mind the shots at all (I know that some people do). I was on letrozole so long that I thought that the faslodex was a good change. I also appreciate not having to pop another pill.
I hope this combo holds you for a long time. Looking at your other choices, this seems to be the best one, especially since you have done so well on Ibrance.
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This was based on a Pet/CT which is all I have. I think they saw them on the Pet because they mention SUV values that are generated by the Pet. I got out all my previous Pet/CT scans and am going to sit down and go through them. One of the new ones is on my femur but I already had one there, I think. Is this really new? I wonder.
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Glad you updated Jaycee and hope this combo kicks it back. I’m finding this a bit strange as I too have just moved to Faslodex after a 5mm node appeared in my lung and nothing anywhere else, but my highly respected MO wouldn’t combine it with any of the CDK4/6 inhibitors - I did ask. She said as second line after the failure of I/L there was no evidence that adding ( or keeping ) the Ibrance or another like Verzenio would make a difference. I’ve seen that written too but said I knew of women who were on a combo as second line and pointed out that we had no idea which of the 2 drugs had failed.... I’ve seen that chat here too.....She then said there are clinical trials but not here.
I also separately asked my on the ball nurse practitioner, she said these are coming in the future, but not yet. I think that means not soon enough for me....Basically I wonder if the Scottish Medical Council hasn’t approved these combos as second line for financial reasons.
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Karen probably the money part. sadly.
Rabbit you are hilarious. You lifted my funk but not enough to remember or share a funny story. Unless me telling you that I just got off the phone from disputing a bill after 6 phone calls in one day which included one disconnect and my call with my insurance representative got sent to voicemail bc they don't talk to insurance companies. The funny part - after I angrily spoke to the last representative- with my face red and sweat beads popping out (over the course of 2 hours) lost my cookies and raised my voice -no cursing, my husband says, "the time to be patient is when you're being tested." He's dead.
Tanya
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Miss Rabbit...great to see your sense of humor. 🙂
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RRabbit - love your humor!
Jaycee - a also spread out my petscan reports and analyze them. I have found faslodex easier on side effects compared to the 7 years I was on femara (as far as joint pain is concerned) and also haven't had an issue with the shots...so far the nurses have been pretty good except one did hit a sciatic nerve on one side. If you have slight progression I think it's good that they are tweaking one of your meds and not throwing both out since you have done well for 2 years on Ibrance/femara.
Karenfitz - it is always frustrating to me when oncologists have such difference of opinion and I sure hope it isn't due to cost or funding but I don't know. Hope you are doing well.
Wandering - I found Montana so beautiful when my husband and I visited Yellowstone this August. We did buy bear spray while there as all the hikes we were on had huge signs with warnings and I thought "I am taking all these meds and fighting stage IV cancer - would be kind of ridiculous to die from a bear attack". We never saw a bear but saw plenty of bison and elk. Pretty magical place! Hope you have a good appt this week.
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Karen, Your doctors can look to the Verzenio monotherapy trials at the subgroup who had previously tried I/F, in order to estimate how many remained sensitive to a CDK4,6 inhibitor. They saw that a third of those responded to Verzenio alone for more than 6 months, a third progressed by six months, and a third did not respond at all. It's so frustrating, no idea what else you could do to get some Ibrance or Verzenio added...
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My wife has now made the switch from Ibrance and letrozole to Verzenio and letrozole. Her scans show no progression, but tumor markers are rising significantly on two consecutive tests. The Onc was able to justify the switch on the basis that as far as scan are concerned (and that is all that officially counts), there is no failure of a cdk 4/6 inhibitor, but that because of the low blood counts on the lowest dosage, a switch to a less suppressive drug like verzenio might improve her blood counts. Also, the Onc thinks that if my wife can tolerate a higher dosage of verzenio and with no breaks, it might work better than the current regimen of ibrance 75mg. I will let you all know when we get some future results back.
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I understand it that since Ibrance was only recently brought on board the NHS in the last two years that you get one shot at it and only in the first line. I know I have read elsewhere of ladies who were on second or third line + after it was introduced here who were not allowed to try it. So I guess you could look at it one of two ways - either a cost effective approach so that more people are covered with the right to an awesome drug, or drug companies attempting to recoup costs/make profit through broader, more "creative thinking" of drug application (within the boundaries of trials etc).
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aprilgirl1: Yes this is a magical place. We have deer and pet rabbits in the yard. (One rabbit we have named Bebe since it's so small). Glad you had a nice visit to Montana. As you said it would be bad luck to get killed by a bear while hanging in there for the cancer treatments. I noticed you are in the Seattle area - be vigilant when you are out in public. We feel pretty safe here but almost everyone has a pistol, including me. I took a class several years ago and have almost forgotten how to use the damn thing - don't think I would actually shoot anyone anyway. The big city is too "big city" for me now. I am a native Houstonian but doubt I will ever go back there.
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Ladies and any of you guys out there. I got a very disturbing phone call tonight from one of the nurses in the oncology clinic. She started out by asking me if I was planning on making my appointment on Wednesday - which I thought was kinda strange. (I have been a patient at the clinic for 7 years and have had the same doctor except when we were snowbirds). She told me that our oncologist would not be there for my appointment on Wednesday - I asked her if he was on vacation - "no". I asked her if he was ill - "no". She told me he was no longer at the clinic and some other "doctor" would be there on Wednesday. (He Is the only oncologist in Helena, Mt.) Don't know who the other "doctor" would be or any other information. Have any of you had this experience, what was the result? This is very unnerving. Several years ago there was rumor that he would be leaving (not his choice). Many of us wrote to the board at the hospital our wonderful experiences with him and he stayed. This seems to be different and more "final". Could this be a financial decision at the hospital? Your experience and thoughts are appreciated.
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Wandering- So sorry you are going thru this. I doubt you get an answer to what really happened. If your cancer center is a corporation, then the new "doctor" is probably from another area but in the cancer center's system and was sent to cover the patient load. You will just have to go on Wednesday and see what the other "doctor" is like, what he/she says about the transition. See if you like them, how they discuss your case, are they staying and going to be your new doc or just a temp. Then see what your other options are-- locating to a new cancer center. My first MO (I have had 3 now) left the area. Rumor was his views/ plans conflicted with the Administrations and they didn't renew his contract. Only those on the inside really know the workplace politics. We, as the patient, just has to go along.
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Candy - That about sums up Wandering’s dilemma. Good luck Wandering! Who knows, you just may like your new doctor even better. 🤞🏻🍀
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