Ibrance (Palbociclib)
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I was hesitant going back to the this cancer center when I was diagnosed with mets buts it was the best and closest location in the area. My first doc was great. He left. My new doc just finished his fellowship under drs that I am not impressed with. I stayed this long only because of having knee surgery. Trying to find a quality facility has been a challenge. I made the decision based on a lot of research and asking around.
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I feel like I am fighting a battle that is hard to win. Tonight Is my last ibrance for thiss cycle. I am two weeks on two weeks off because of my low neutrophils and knee surgery. My knee surgery has not progressed as I hoped. I had six weeks of out patient physical therapy and agreed to stop when there program got too easy. It was a one size fits all. I have been messaging my scar daily and instead of getting lighter it is getting bigger and darker red. Apparently i have hypertrophic scaring. I still have areas of internal swelling and discomfort. Despite all this I am doing well physically. My neighbors who are both recently retired physical therapists feel I got lazy therapists. As a result some of the issues I have will take longer to heal. Possibly as long as 1 to 3 years. Since the same scarring is open internal and the therapist did not address it in the beginning. I feel like I have just added one more weight to my shoulders. With a red ugly scar on my knee. I have gotten my dog up to 1 mile walk down hill and uphill. No flat area because I live at the crest of a hill. I am still waiting to hear from the other hospital. Hopefully this week. I start my break tomorrow from Ibrance I feel like I need one from letrozole to. I keep wondering how many healing issues is being cause by these 2 cancer drugs? Thanks for letting me vent.
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Finally got an appointment with Anna Barshinger cancer center which is part of Penn Medicine. One of the larger hospitals in Philladelphia. I will be seeing a woman Dr. They told me all the Breast and gynecological cancer Drs. are women. The current clinic I go to all but one is a man for all areas. Females seem to leave. Anyway this is one frustration down and moving in a healthier direction.
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@brutersmom, good approach - one step at a time and this is a big step you have achieved. I hope it leads to many more successful steps. It is so important to be comfortable with your medical team. My next appt is with locum onc as regular onc is away. She did not sound happy on phone appt when I told her that her secretary had made an appt for me with locum. I will be interested to see what he is like. It is only for one appt. and really it will only be for scan referrals.
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@brutersmom OMG. That's a terribly frustrating experience. I wonder if medical service providers appreciate that going through a terminal illness, and then getting no cooperation for something as routine as access to ones own medical information can actually exacerbate deterioration of a patient's health. And when you lose your cool, you're labelled!! SI'm so sorry you've had to go through this. And I do wish you all the best and pray all goes well from here. Sending hugs 🫂 🤗
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my neutrophils tanked so I’m off for a week and they are lowering the dose to 100. Repeat labs next Tuesday
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Wren-Some of us have found that it is better to do labs in the afternoon. Our ANC seems to be higher-worth a shot.
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I’m sorry about that wren. Noticed that if I do some exercise, walk up the stairs, walk faster from parking to the docs office and also have dark chocolate. Not sure if it actually works but so far it did trick for me. Healing thoughts your way!
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Wren44 Neutrophils are higher in the afternoon. I exercise a lot so I am not sure how that effects them. I have decided for the next year because of my knee surgery I would do them in the morning and take that longer break if needed. I have been getting lots of sinus infections and now with the knee surgery I want to keep them to a minimum due to the risk of my knee becoming infected if it should get into my blood stream. I am on Ibrance 75 mg. Currently 2 weeks on 2 off. In two weeks I see a new oncologist for a second opinion and to possibly stay at that facility because I don't care for my oncologist. I will see if anything changes.
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The blood sample was done in the afternoon. I haven’t been exercising but that’s my normal. I’ll be on 100 with the new dose
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Hi all, just checking in . I just returned from a wonderful trip to Maui with long time girl friends. So much laughter , snorkeling and good meals . These women have been my friends for over 32 years and we were building our careers and having kids at the same time . I moved 18 years ago and miss seeing them often so these trips are precious to me !
Yesterday I had my fulvestrant injection and blood work . ANC (neutrophils ) are .95 which is pretty good on day 28. I started my new pack of Ibrance last night :) @wren44 i am on 75mg Ibrance , had 2 dose reductions in the first year due to consistently low anc levels after the week off (below .80) . Yesterday I had my blood draw at 2:30pm and afternoon blood draws for me make a difference with higher anc levels (which I noticed 6-8 months ago !) .I realized at my appt that this week is my 4.5 year "cancerversary " of starting Fulvestrant and Ibrance. I'm thankful I've had 4.5 years on this first line treatment and feel good. Work is very busy , despite the high interest rates !
@brutersmom let us know how you like your new oncologist for the second opinion and possible switch .
I hope all of you are doing as well as we are able to be in this crazy cancer world .0 -
Aprilgirl-Thanks for checking in. Sounds like you had a wonderful time with old friends in Maui. I'm heading off to London tonight. I've never been there so this is the year!
Happy 4.5 Cancerversary! May you have many, many more and continue to life full of joy and meaning.
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Have a wonderful time! London is my favorite city and there's always something new to see or do.
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Thanks Eleanora!
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Aprilgirl1 your trip to Maui sounds wonderful. Wondering how the area that burned is recovering. I would love to go back sometime but I am not sure it is in my near future with my husband's situation.
Chicagoan enjoy London.
I will let you all know what happens next Friday with the new oncologist. I have been tired lately due to pain in my knee. The Dr says it fine but after talking to my neighbor a retired therapist I realized it wasn't exactly fine. I went to a new therapist that they recommend. The pain was coming from the fact that my surgery knee is 25% weaker then my other leg and my weak leg was trying to do what my strong leg wants to do. I guess being physically fit at my age is not the norm. Working to strengthen the left leg so it can keep up.
Hope everyone is doing well. Keep us all posted.
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@chicagoan - have a wonderful trip to London ! So happy for you!
@brutersmom keep us posted . I know it has only been 4-5 months since your surgery and it must be frustrating to still have pain :/
Re: Lahaina , that area is closed to the public and only residents who have ID with an address in Lahaina are allowed in . It is devastating , even just the glimpses you see as you drive past. Other areas of Maui are fine , still struggling with low tourism and displaced local people who lost homes from the fire .
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Chicagoan may I welcome you to the U.K. and I am sure you will love London.
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Aprilgirl1. I enjoyed walking along the stores and down the main road in Luhaina. Spent the day there. Hope you go to the volcano and other fun It is so sad. I wasn't a fan of the hot sand but I loved the water.
Today was interesting at PT. The sole focus is strengthen my left leg. Today felt more like a cardio work out then therapy. The interesting thing is today I am tired but not exhausted like i ussually feel. My knee aches but it is not painful. I am wondering if I need to go back to doing more cardio.
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Thank you, Chico!
Brutersmom-Glad you had a good therapy session.
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northern lights as seen from Hansville , WA - pretty amazing ! I've never seen them
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Wow!
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Aprilgirl1 - Thanks for posting the photos and noting where it was. I wondered if it was in WA. I'm here too, but in the big city, so was not able to see them. Never have, and I think it's the urban lights. They say tonight might be another possibility, so I'll probably be up periodically hoping, and hoping, and then finding nothing. So glad you got to see those!
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I’m in Hood River, Oregon visiting my son. They were ama zing here so tonight we’re going to drive to a darker area.
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They say it is visible over my area. Ungmfortunately we are again stuck in a rainy mess. Cloudy last night. Sunny today with more clouds coming back in the late afternoon and rain all night tonight and tomorrow. I doubt I will get to see anything unless I go on a road trip.
Aprilgirl1 thanks for sharing. I have never seen them and would love to. They look amazing.
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Aprilgirl1 - The best pictures of the lights that I've ever seen from around here, always seem to come from over on the peninsula (no surprise), so it must be all the lights over here on the "mainland" that make them impossible to see. For once it wasn't overcast, so I had hope and will try again tonight. What time did you get those photos?
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Hi all. Nothing much to add. Cool photos of the Northern Lights. San Diego is a bit south to see them - haha.
brutersmom, I hope the PT helps. It's interesting how weakness in one area can make another compensate and then a whole new set of problems develops.
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Aprilgirl, what beautiful photos!
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One more photo , this one taken while lying down on the beach . @threetree, We got to Hansville at about 10:25pm. By 10:40pm we started seeing light blue streaks . It was almost a moonless night and super clear skies - we did go to a location that does not have much light pollution on purpose (with hundreds of other people ). Everyone behaved well:) At about 10:50pm it was like the sky opened up . These are just iPhone photos - you could see the colors with your "naked" eyes but the colors were more faint . I had no idea it would look like it was 360 degrees . Never seen them , thought I'd have to travel to Iceland or Alaska to see this .
I'm on a ferry heading to hold an Open House in Seattle and then meeting my husband and friends at a Mariners game . I'll definitely need some caffeine later this afternoon :)2 -
@wren44 I love Hood River !! We have friends across the river in White Salmon , WA. Such a beautiful area .
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