Ibrance (Palbociclib)
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Penny, wishing you a speedy recovery. Hope you will be home celebrating with your family soon. It’s also my birthday this weekend...wishing you a happy birthday as well
AprilGirl, congrats on the good scan results!
Keep well everyone!
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thereishope4us- Happy Birthday this weekend!!!! Enjoy. I love your screen name.
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Update -- with fingers crossed!!!!
My DH and I just met with the doctor again. My ALT has now fallen almost 40% in 24 hours. Having ruled out COVID, hepatitis, congestive heart failure, and major liver metastasis the medical team has concluded ...
... I was going into drug-induced liver failure! Their best guess is that the I3C is probably the main culprit, along with some interactions with Ibrance,the baby aspirn I'd started to take, my daily tumeric tea, and -- oh yes -- the fact that when I started to feel under the weather I took tylenol.
I'm holidng my breath that the next blood test shows the trend continuing. Looking for a silver lining to these horrendous last 24 hours, I can at least avoid the scanxiety that was building for my 7-9 appointment up becasue they ended up looking at just about every inch of my tired beat up body.
Likely I do have some "minor bone progression" but hey -- I'll take that over liver failure!
You women are amazing. I felt your support and love every step of the way. I don't have the words to say how grateful I am.
Last but not least -- Happy Birthday ThereIsHope4Us!
Hugs, Penny
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Penny, thank you for the update. I keep checking to see how you are. Glad you’re out of the ICU and hope you’re home soon to celebrate your belated birthday.
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Aw thanks Sunshine :-)
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So this evening I was talking on the phone to a friend that is going to be on vacation from his job starting today and all next week. We had a good discussion. But then he said "Candy, when are you going to leave your house? When are you going back to church? And we could go out to eat while I am on vacation next week" . I explained the immunocompromised situation, the lack of the public adhering to the guidelines (masks, social distancing) and my fear of the virus with my cancer situation.
Asking your opinions--- I know our neutropenia with Ibrance use is supposed to not cause increased infections, but what are your MO's saying about COVID? Are you still staying in your homes? When do you plan on getting back out into society? Am I being too cautious? What do your friends/family think if you are staying in and not joining in with them? Are we (cancer patients) being too fearful? I feel I am doing the right thing, but then I wonder if I am being a hypochondriac recluse. And I do wonder when I will feel safe getting back out--church, eating out with a friend, etc.
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Penny- Thank God you are getting better. Wow, drug induced acute liver failure!!! Scary.
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Candy, I'm more concerned nowadays about catching covid than I was in the early months, now that there is a better understanding of the short and long-term damage it might do- also, relatively speaking, some of the vaccines are looking quite good so I'm prepared to try to wait that out before doing most normal activities, and staying put as much as possible.
However, my 90 yo mom is still in lockdown in assisted living, so I am going to pull her out in about ten days for a month-long break at my house My four sibs will be in and out visiting as we try to reverse her weight loss and stop her mental slide- that seems more dangerous to us now than the virus is. We talk to her on the phone and wave to her through the window but everone is worried she's giving up; she's already had four months in solitary confinement, with no let-up in sight!!
Will be interested in everyone's thoughts on this question
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Penny-78 - WOW - so relieved you were admitted and they were able to sort this out. How scary. Minor progression vs liver failure, I will take the minor progression any day. Have a wonderful birthday weekend (hope you can go home soon!).
Candy, it's tough for us, right? I am fairly social and to be completely shut in would be hard. I am working and meeting with people in small groups (with masks and lots of sanitizer). I have had a drink at an outdoor patio/bar - seating every other table and server in a mask. I would socialize outdoors, meet for coffee or dinner if I can eat outside on a patio and it's not crowded. Church is tricky but with a mask and distance seating, I might do it? Ours are not gathering. There is a church doing a drive in style meeting. If you attend an indoor church, no singing! (there was a sad situation with a choir in Washington State early on in Covid where many people got Covid and some died from a choir practice). We have to balance living, enjoying life and the realities that some times our white blood counts are low. My oncologist is adamant that Ibrance does not make patients compromised, but we have to watch our white blood counts (so at times we are more susceptible but not always compromised). I just canceled a flight for my husband son and myself to fly to Palm Springs to visit my parents for my father's 85th birthday next week. The covid cases are high and rising down there and I don't feel ok flying in to see my dad when he is elderly and a bit fragile. That makes me sad as I am stage IV and he is frail and 85. Haven't seen him since October and have had to cancel 2 trips.
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Penny-78 - I’m so glad to hear your numbers are normalizing quickly. What a relief!!
Candy - This really is a tough one and the decision is so individual. It doesn’t make sense to go out if you will just be nervous and not enjoy yourself. Part of the equation is your WBC. And part of the equation is how prevalent Covid is currently in your area. My county is currently at its peak with 25 active cases. That’s small potatoes compared to a lot of places. I have gone out a handful of times. We chose outdoor dining, where tables were adequately spaced and we went in off hours (like 2 or 2:30) on a weekday. One time a table of four occupied a table that we felt was too close to us so we moved our table over. Problem solved. We did dine indoors once but we were the only customers in the whole place. And yes, I used lots of sanitizer - after touching the chair to sit down, after touching menus etc. Once we arrived at a place and it was crowded, so we just left. And today, I just went to a store for the first time since early March. We needed a new toaster oven and I wanted to see two different display models side by side. We went to a Kohl’s on a Friday at 6:30 pm. I didn’t touch anything. The store had very few customers. Of course, these outings were with my husband who is very flexible. He always tells me that we will do whatever I feel comfortable doing. And there were several times, I told him that I didn’t feel comfortable going somewhere so we just stayed home. One time, HE went somewhere to get carry out but HE wasn’t comfortable with the set up the restaurant had going so he left because he doesn’t want to bring anything home to me. ❤️ I will say that I am more concerned with Covid interfering with taking Ibrance then I am of having a fatal case. Given that my ANC and WBC count are already below normal, I imagine I would have to stop taking Ibrance if I got sick and I don’t want to do that
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Hi Candy, I’ve loosened up a bit on social things and restaurants, just recently. I met one friend for lunch on a patio with tables well spaced. We both wore masks while waiting to be seated, as did the others we saw. Just yesterday I went to a backyard gathering with six retired work friends. The hostess was very concerned about social distancing and had our chairs in a big open circle. We are long time friends who have shared many ups and downs through our working years and still do. I stayed about 2 hours, which was long enough for me.
My MO said that I’m not more likely to get the virus (except for my super low neutrophils week I’m betting) but I may have a harder recovery. I feel I’m being careful with hand washing and distancing, and I know that I’m mentally perked up when I see friends and family. You have to feel ok about getting out, but at some point it might be a good thing for you to try something outdoors with your friend. My state (OH) has a mix of mask wearers and non mask wearers with some big city mayors justnow mandating them. DH and I wear them. I hope you get more responses to your questions!0 -
candy, we are all in the same boat. We should take extra care for ourselves as well as loved ones. When I see many young-party—crazy just don’t care about community so spreading virus, I feel sick, the virus could have been under control by now but instead it is surging unlike other countries.
April, God bless your father, I am sure his generation experienced many more difficulties, they are strong and adapt themselves with new circumstances. Thanks to technology we can see our beloved despite distance! please send your father a warm happy birthday from all of us 100+ nice ladiesI avoid crowd as well as places that can’t wear a mask, like dinners. We do some bbq in our back yard time to time instead of dining out, and enjoy our time without fearing of virus. my family members understand my condition and concerns, of course sometimes I should remind them sanitize their cellphones, keys etc. once enter home (I haven’t seen them to listen to me this much easy
)) they see their friends in a small group and go to work. I FaceTime with friends and other family members and try to get use to this new normal as mbc made me to choose to! There are many entertainment that now are access free. I joined our mbc support group via zoom last month for the first time and it went well, it was good for my painful back as I was leaning on a smooth and comfortable pillow instead of sitting on a chair whole time! there are also online mindfulness/ yoga sessions I tried to follow them if my level of energy helps me! Through this thread and bone Mets I read many articles on mbc and new treatments thanks to wonderful ladies. more importantly, no excuse to skip my pt exercises haha I use “concern” and “careful” about my condition instead of “fear” , that helps me to cope with this staying home situation/ virus spreading and global pandemic. I should say since I am on these threads and read people’s inspirational stories my emotion is in better place, still there are some days that I cry for something that I cannot change, and some days I can’t get up the bed because of pain or low energy. But some days are like today I’d like to share shine with my inspirational brave mbc friends.
Best.
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penny was so glad to see your update! Hoping things keep improving and your headed back home to do some celebrating very soon! Happy belated birthday!! I concur minor progression over liver issues, definitely take the minor progression!
Candy, for me I think I'm more afraid of MBC, MBC will for certain kill me one day, while the virus threatens with illness with possibility of death, a small one. MBC is certain. Virus is possible and that's how I look at it. I wear a mask out shopping once a week. My church is doing service outside in lawn chairs spaced apart. My goal is to be out and about living my life as much as I can or am allowed to, mentally its not good for me to be cooped up too much. I'm concerned mostly getting through the coming winter months. No yard for distraction will be hard. I hate that this is an added concern and reality for us. I think it just boils down to what your comfortable with. Do what you feel comfortable doing and what would make you feel secure but allow you to enjoy yourself. Outdoor stuff spaced apart should be safe. Take a walk near a lake where no one else is around or walk a hiking trail. Picnic on your front lawn. Take baby steps a little at a time.
For me I try to be careful but I really don't think about the virus, I just can't get cancer off the brain.
Hugs to you Candy!
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Penny - This is good news! Hope you go home very soon so you can celebrate.
Montreal reported 28 new covid-19 cases today. It had been dropping due to physical distancing, staying home, and more hand washing. But it will increase as more places open. The virus is spreading more in younger people as they are socializing more now. Until recently I have only left home for medical appointments where almost everyone wears a mask. Now I will order with curbside pickup. So still avoiding crowds.
Given that there's no vaccine and some survivors having residual side effects (eerily similar to cancer treatment), I don't want to risk getting it even if I weren't on Ibrance. Even my healthy younger brother is cutting his own hair.
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RK brings up a good point that is not talked of very much when she says, “I am more concerned with Covid interfering with taking Ibrance..." The first thing an oncologist is going to do if we get sick is take us off our cancer treatment. No thank you, not worth the risk to me. That off-treatment thing happened to me way too much when I was having unexplained fevers last summer, and I had progression. I have heard of some people doing outdoor (often backyard) masked, distanced visits. That is something that seems to me the safest way of actually seeing people, and I have done it twice. There is scientific evidence to show that outdoors is generally safer than indoors, if we are not talking about crowds.
https://community.breastcancer.org/forum/164/topics/876876?page=1#idx_3
Research articles about cancer patients and covid-19.
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I think its a balance (like everything else) and a range of risks. Anything outside is going to be safer than indoors.
My street has had weekly 'drinks' on one corner for the past 4 or 5 weeks as a couple of Australian guys running a microbrewery were doing curbside appointments - they roll up with two types of fresh beer in kegs and a selection of cocktails and will serve for an hour or two out the back of the car, bring your own glass. We had a good 30 people out from up and down the street all chatting and kids running around in an area removed from the adults, but folks were trying to be aware of distances. I did attend those and enjoyed just talking to new people - it really gave me a mental pick me up. We also had a barbeque with friends at their place eating outside and enjoyed that too with no adverse consequences - just we couldn't go into the house as her mother lives with them and is over 70. No problem.
I have to take public transport to get to my hospital appointments, but that has been fine - everyone has to wear masks now, hand sanitize when i get on and off, etc.
Today the pubs are opening and like hell am I going anywhere near THOSE for a while. Even with the requirements to reserve a table, order from apps, etc. Same with cinemas (are they nuts?!) that are now open as well. Restaurants it will take me a while to go back to. Even hairdresser - I think I can wait a few more weeks at this point to wait and see what happens. Anything indoors I am very concerned about, and while I did go shopping at one store last week (and I was more at risk from an allergic reaction of the scent added to their hand sanitizer!) I felt enough anxiety that I probably won't do that again for a while. The gym (when it reopens) is a no go for me. Give it a few weeks and let's see what happens - systems will evolve and people will find new ways to deliver currently 'risky'' things in a less risky manner, and then it comes within the sphere of what I am open to risking.
The other thing to remember is make hay while the sun shines. Its summer and its possible to do things outside - how is this going to work in December? So may as well get your fill of social interaction now as a respite before winter because this on top of flu is going to be tough all the way around. You may also want to try something small to start - meet your friend for a coffee or whatever outside somewhere - to ease into the idea.
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I stayed in my home and garden for 10 weeks, but decided I needed to get out for my mental health. I always have a have a face mask with me and wear it if I feel people are getting too close, even outside. I meet up with local friends/family outside, for a socially distanced walk or chat, each bringing our own drinks and snacks. Other than medical appointments ,I have been on 2 brief shopping trips to one shop on each occasion. I will not be going into bars, restaurants or inside other buildings for some time as the viral load is much heavier indoors. I am anxious about contracting covid , as I have secondaries in my lung!! I feel it is up to me to protect myself and only do what i feel comfortable
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Penny...I'm so happy to hear things are looking better! Hope you get to go home soon so you can enjoy your birthday. Happy Birthday!
thereishope...Happy Birthday to you too!
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Penny, Such a relief! I hope your numbers are continuing back to normal. 🌻
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Thank you for all the advise and the good conversation.
I agree that outside activities is better than indoors. The thing is, the weather. It is hot and humid here. 90's with heat index at or over 100. And I cannot tolerate the heat anymore- I get short of breath and feel faint when I get too hot. So I need indoors and AC. If it was cooler, then the outside visiting, at a distance and with a mask, would work for me.
Also, in my town, most think they won't be affected by COVID. Mask wearing is the minority--you can see that when driving around. A couple of months ago, when our Governor placed restrictions on things, our Sherriff and Mayor both said that they would not enforce the Governor's rules. So... masks and social distancing are not the norm for my area. We have had over 100 cases in our County, lots more in our surrounding counties, and 144,000 in our State.
I do leave the house--- weekly Dollar store shopping when the store first opens and me wearing a mask, grocery pick up curbside, doctor visits, hair cut beginning of June and due again in August. I just do not socialize in restaurants or church. I view church service online and call friends on the phone to visit.
Cure-ious- I can understand about your mom and her mental well being and your family being able to visit her.
Aprilgirl- Our indoor church services are "back to normal", singing and all. And the majority not wearing masks!!
RK- Interesting point. I could get a mild case of COVID, not too ill and not kill me. But I would have to stop Ibrance for a time. Have to stop cancer treatment. I don't want that.
I think I am going to have to stick to what I am doing for now. I just do not want to take the risks. Risk versus benefit.
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Just posted on the Liver Met Thread that Jaylea is in hospice. See Ixempra Thread.
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Penny - glad to hear that you are getting better. Drug interactions with other Rx, supplements, and over the counter are scary to consider. I tell my doctor what I take so if there are any red flags, she can tell me. I take a number of them including multi, "boneup", turmeric, biotin, mushrooms (both fresh and Turkey Tail). Turkey Tail was the only one that raised some concern, because nothing is really known how it might interact.
candy - covid19 and socializing. In general I have been avoiding places where people likely to gather. So hard to know what to say. The cancer and meds make us more vulnerable to getting sick. Recent spiking where I live, just as the tide was turning. In my city because of spiking, masks are now required in any public place. I have no idea if that is being enforced. Everyday it seems like we learn more about it. Unfortunately, it is highly contagious. Being outside, distancing, wearing masks. reduce chances of catching it. I do leave the house for walking (seldom around others unless passing on sidewalk or trail), groceries. This week I went back to the gym to swim. The gym is strictly enforcing distancing. With swimming, we have to reserve a time slot, and only one person/lane. A month ago I hosted bookclub (first time in 3 months), outside. No food/drinks provided. Fairly well distanced. No one wore masks. no reports of any illness.
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Aprilgir, Congratulations on getting to NEAD
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Penny, so glad to hear you are getting better.
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Hi GinnyO2, My hot flashes where very intense and I mean intense, the letrozole more than tripled any hot flash I had ever had, I could not wear cloths, I walked around with a fan, I could not lay down to sleep as my back would get so hot and i would have all night hot flashes in bed, I was exhausted from them, than one day I read on this site that a lady tried a chili pad for her hot flashes, so she could sleep, so I went to the web site read up on them and thought that they where very expensive but I knew I had to do something so I ordered half a bed size and I also ordered the ooler pad its one step up from the chili pad anyhow once I got it I put it on my bed got it all set up and now at least I can sleep with out getting a hot flash. I set mine to 65, anything warmer does not work for me. I am hoping that a few years from now my hot flashes will settle down, during the day still mostly sucks from them. this BC has been a ruff ride for me because of hot flashes. good luck P.S I pay monthly payments for my ooler pad.
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Hey everyone, Just wondering if anyone has had a dosage reduction of Ibrance after taking it for over a year? I was started on 125 mg and was dropped down to 100 in the first couple of months because of low counts. Thankfully, I have been doing well on the 100mg, which I have been taking for almost 2 years now. Then last month I felt horrible at the end of my third week and had sores in my mouth. After having blood work done, my Dr. said we might have to drop down to 75 because my counts were too low. She did the blood work again a week later and my counts were back up so she left for on 100mg and said we would see how this month goes. Unfortunately, the mouth sores are back, so I am guessing my counts are too low again. I am sure we can all agree that change makes us nervous and sad; well I guess I shouldn't speak for anyone else, but for me the dosage reduction makes me nervous. I worry that 75 won't be enough and I am worried about what has suddenly changed in my body. Would love to hear if anyone has experienced something similar after taken Ibrance for a year plus. Thanks for being wonderful!!!!
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Sydney - has your diet/water consumption changed at all recently? I was doing fine on 100 (after quickly dropping down from 125) and then in May when we were moving house and my water drinking wasn't nearly enough I pulled a low blood count and the one sore I get in the corner of my mouth was lingering for a good half the cycle. In June I worked to get my water drinking back into 3-4 liters a day and I was eating better since we were settled (more vegetables during the day) and I had a great count even with only a 5 day recovery and the sore was almost nonexistent.
I know its a data point of one, but may be something else to consider!
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Thank you for the response SondraF. I had questioned my diet. I had been on a very strict diet, then came covid and everything has changed. I have not been as strict about my diet, and my usual water intake has not been going well either. When I considered that, I assumed I was over thinking everything and being ridiculous but now I am thinking otherwise. I think I am going to get back on track and give the 100 mg another month and see how it goes. Thank you for sharing!!
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Hi Sydney, I was on 125mg for 17 cycles then reduced to 100mg due to low wbc. My ONC said that the meds build up in the body after awhile. She also said it has been shown that 100mg works just as well as 125mg.
I agree with Sondra. I think diet impacts wbc along with the mouth sores. I haven’t had any for quite awhile but am getting some now. We’ve been traveling and haven’t been watching what we eat.
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Glad that could potentially help - my approach in June (and since!) was to start every morning with two large glasses of filtered water (usually with a spritz of lemon or a smidge of fruit juice for flavor) that I drink while waiting for my coffee. I take my meds in the morning, so a few hours later when I have breakfast (usually some fruit, greek yoghurt, coconut flakes, occasionally scrambled eggs and toast) I take the pills with another large glass of water. Thats half a day's intake right there, so if I do another three large glasses throughout the day (one at lunch, one or two at dinner) I am covered even before adding on other drinks like coffee or the occasional small soda or cup of herbal tea.
I really hate that damn mouth sore so the fear of it showing up motivates me to chug the water!
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