Ibrance (Palbociclib)
Comments
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Oh Sunshine, I'm really hoping they will get you in even sooner than that! I wish they could've at least been compassionate and empathetic when telling you the machine is broken down.
Aprilgirl, it's wonderful to hear you've reached the four year mark! Very glad to hear you're doing okay.
I agree that only relying on blood work and not scans is not standard of care for stage 4 MBC. My doctor doesn't do the tumor marker blood work either. I'm getting scans now every six months, with the understanding that if I have any new symptoms, we will scan sooner.
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@sf-cakes , congrats on cycle 36! It's hard to believe you're starting cycle 36 and I'm starting #49 next week !
Scans every 6 months is perfect . My onc said we could go to 6 months in between last year but for 2023 I wanted to have 3 scans (every 4 months ). Next scan in early December !
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Sunshine99 Happy you got a new date. This weekend isn't to bad.
Dulcet. I have been on I branch 10 months. I struggle with low anc and fatigue. My bilirubin is always low. I have been told that is not a concern as long as the other numbers are good. I have also been told that my fatigue comes from low neutrophils. I also think letrozole causes fatigue as well.
Aprilgirl1. Thanks for the response. I finally realized that what has bothered so much about the plan is my cancer was found by a mammogram. I had no lump or tumor. This last time because I am so fit I didn't start having breathing issue until about 2 days before the situation was serious. I did have a cough at night. I am concerned I won't have symptoms and I will have a mutation that does not effect the ca27.29 number. I meet with a new MO the Tuesday after Thanksgiving. I will see if he has the same opinion. If he does, I will be getting a second opinion from Fox Chase Cancer Hospital.
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@brutersmom - good for you. Follow your instinct to get another opinion if this new MO wants to watch tumor markers in lieu of scans. Let us know how your new onc appt goes . I'm most excited for you to have your leg surgery early next year so you can be in less pain and keep up your workouts/ fitness .
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Aprilgirl, it is amazing and hard to believe that we're on the number of cycles that we're on! I remember so clearly coming here for support and advice after my disaster with the first cycle. You and Rabbit got me through those early days. Sending massive love and hugs your way 🤗
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I’m cross posting because my hands are shaking and it’s hard to write, but I wanted to share:
The GI doc who did the most recent procedure and biopsy called to tell me the cancer has, in fact, spread to my esophagus and lymph nodes in that area. He is going to call my MO and the RO to discuss a treatment plan. He thinks it will probably be IV chemo and radiation. He said if I can’t get enough nutrition/hydration orally I will need a feeding tube. He doesn’t want to put a stent into my esophagus because they can be very uncomfortable and can migrate. I’m still able to eat, so hopefully I can hold off on the feeding tube. Ensure will continue to be my friend.
I am holding off telling my dad and sister until I have a treatment plan in place.
This just sucks and I’m so upset. This is not what I wanted to hear, but in one way, it’s good to know that it’s not just something in my head – although the MRI may show something there – haha.
I’ll share more as I know more.
Love to all,
Carol
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@sunshine99 Carol, I am so sorry to read about this progression . We are here for you. I completely understand waiting for a plan before sharing this information with family . I do this same thing and also need to "practice " sharing this kind of information just so I know I can explain it clearly. (yes - I talk to myself on occasion ).
I am sure you are anxious for the next step, and to know what your next treatment will be. Please keep us posted. Sending you good energy and prayers for this next treatment to kick this cancer to the curb.
@sf-cakes - girl you read my mind at times ! I've been thinking about our dear Rabbit a lot these days . She sure got us all through scary times with her humor .
@Nancy60 i know you're not on Ibrance but I haven't seen you post and miss you ! Hope you are doing better .
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Dear Sunshine-what difficult news. Prayers for clarity as you and your team figure out a treatment plan. This all must be a big shock.
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Carol. I am so sorry this is happening to you. You have been struggling with this for way to long. I wish I was closer to give you a big hug and just sit quietly while
you to process this. I hope the Dr's come up with a tolerable and successful plan.
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Sunshine/Carol, I'm so sorry you got this result, you've been dealing with this swallowing issue for such a long time, and to have it confirmed that it's the stupid cancer is so upsetting. I'm really hoping that radiation can be an option, and maybe some other treatment that isn't iv chemo? Although I do know a young woman in my local support group who is getting a great response from chemo, so it may be the right option. Sending you so much love. ❤️
I'm going to cross post this, too, so no matter which thread you open, you'll see it.
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Carol, I posted on Mel's porch regarding this unwanted diagnosis. Just wanted to reiterate that I'm in your corner, praying hard for the right treatment and hopefully no feeding tube.
Looking for anyone that has had colitis as a possible side effect from Ibrance??? Seeing temp. MO tomorrow, as the office called and said he wants to see me asap. I don't want to go off Ibrance as I have had such a great response to it and it's only been 7 months. Comments appreciated.
Laurel
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Thank you, everyone for the love! This is the best place to be, and I love all the cyber hugs!
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@sunshine99, we're so sorry to hear about your progression! We're all here for you during this difficult time.💗
Sincerely,
The Mods
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Thank you, mods. I'm not sure how to update my profile, or whatever it's called. I'm now off Ibrance and Arimidex and have started Letrozole. This is some crazy ride!
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@brutersmom I wonder why they haven't suggested the neupogen (or similar) for you. Maybe because the decrease in dosage is keeping your ANC within range? Thanks for letting me know about your bilirubin. Mine was a little low but my other liver numbers were wonky too. Another question for the MO when she gets back from vaca.
I have been reading back on this thread and it really is helpful. I noticed a lot of people lose their hair, like me. I was struggling with hair loss for 2 1/2 years on anastrozole but wow, did I really start losing it on the Ibrance. My hair is so thin and flat now! I did discover a product that is helping if anyone is interested: Fructis Garnier Mega Full Thickening Lotion. There are different hold levels and I use the #3 and it works pretty good.
@sunshine99 I'm sending you strength to get through this.
Currently I am off Ibrance for 8 days now after 15 days on Ibrance due to low ANC (level 4 with fever) and have had three injections of Neupogen which was successful in bringing up the ANC. I am still a bit fatigued so I'm not sure what that is from. Monday I will discuss next steps with the MO. I've been reading more about alternate dosing schedules which seems successful but I don't see where the studies have included a large group of people.
Is anyone familiar with a radiology website for lay people? I have so many questions regarding all my radiology for the past year. SO many! I have had so much radiology in the past year and wonder did cancer really progress this fast or do radiologists not mention some things in their reports? Are CT, MRI and PET all that different? I am very confused. My reports are different from one month to the next.
Stay strong everyone!
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Dulcea I was talking to a woman yesterday at the pet store. She said her friend had hair thinning from meds. She was told to use coconut and Haitian sold at Ulta on her scalp. She said she now has a full head of hair. Never heard if this but might be worth a try.
As for progression each one of those scans is slightly different. If each one was read by a different person my experience is they report on different things. I had a follow up scan were the reveiw was 2 lines. My husband had a different scan for something else and the review was about 1/2 a page. The Dr. Had to review the scan himself to get the answer for the original purpose of the scan.
You might want to consider a second opinion at a different facility. You might get a better explanation. I don't know what facility/hospital you go to but I went to Fox Chase for a second opinion when I was first diagnosed. They explained things so much better the my 1st oncologist. I fired my first 2. My third o e retired. I liked him. I see a new Dr. this month. Depending on his plann of treatment I may be getting a second opinion.
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Thanks @brutersmom. I have an Ulta near me and am willing to try anything for my hair. I just went from short colored brown hair to long gray hair! I love my hair! It's so much easier long and not having to color it every four weeks! Gray hair - don't care!
Funny you should mention a second opinion because I just had one today at Beth Israel Deaconess in Boston. I love my oncologist but she always seems confused on what to do with me. The Boston doctor said she would have done all the same as my MO and made suggestions for next steps. The only thing different is that my MO wanted to do a scan after 2 months on Ibrance, but the Boston doctor said that these drugs usually take about 3 months to show a positive result.
I guess these radiologists just all have their own opinion. My doctors have had to review scans also to get what they were looking for. For example, I've had one scan describe a spot on my lung as "a mucous plug" and the next month, it was cancer. Do mucous plugs turn into cancer or is it the opinion of the radiologist? But as my MO put it "it doesn't matter because you have cancer elsewhere". I try not to go back in history and try to find out if the radiologists missed something and we could have caught this sooner, because there is nothing to be done about that now. I just want the current ones to be accurate.
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Hi all. I saw the orthopedic on Thursday and he has agreed to do the knee surgery, right after the first of the year. There is some disagreement between the oncologist plan and what he would like to see. He is going to handle that part. He did an xray and apparently the last 6 month has cause bone spurs to grow and they are putting pressure on muscles and tendons which explains all the pain I have. We talked about pain management because of my intolerance to higher dose naids. I have done everything I can this past year to keep my legs strong even though it has been painfull. Yesterday I scheduled every test and appointment that I could prior to surgery. I am a relieved right now to know that there is a light at the end of the tunnel and scared because it is a major surgery. I have even made an appointment with the palative care Dr. to help negotiate pain management. There are still issues I need to address with the oncology department but I decided to take advantage of the situation and get this out of the way. Those can be addressed later. Both the orthopedic surgeon and the palative care nurse was surprised when I told them that since I was doing so well, I wouldn't need any more scans just blood test. I told the both of them, I didn't agree, but I wanted to get this out of the way before I start that fight. The bad news is I have to do it at the Hospital. The doc won't do it at the orthopedic surgery center which is much nicer.
Last sunshine99 I hope you are doing better. Question. You have tree in bud lung nodes. Did you have any issues with anesthesia when you had you tests?
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brutersmom, I had no issues with the anesthesia. My cough is pretty much gone, so hopefully my CT scan on the 28th will show no continuing issues there.
My PET scan on 12/7 may show something, but we'll cross that bridge when we get to it. Right now, the RO wants to do 10 sessions to my esophagus but also wants to wait until after my MRI on Sunday the PET scan to make sure there is nothing additional that needs to be zapped.
Carol
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Oddly, I started reading this thread again because of hair loss. Mine is thin and completely unruly. It's cut in a pixie and the top stands straight up. Some of the gray hair is curly and has a straight shaft and an end that goes back and forth like a radio antenna. I've decided to just be ok with the frizz since nothing seems to tame it.
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Sunshine99 Radiation on the esophagus sounds rough. I hope you do well. And I hope the scans do not find anything else. Thanks for the info on the anesthesia. I found out that the knee pain is because I have developed spur like growths in my knee and the are putting pressure on my muscles and tendons causing nerve inflamation. It will only get worse. It is becoming a serious quality of life issue. Injust don't want anything to interfere this time.
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brutersmom, it's rough when new pains develop and then get worse. It is definitely a QOL issue. Yuck! No fun at all. Can "they" do anything about it?
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Sunshine99 My only option is surgery. Right now I am taking 2 advil 3 times a day against my former oncologist recommendation because of the pain. He wanted them limited because of increased bleeding risk. The way I figure it surgery is no longer optional and they will need to figure it out. Since they told me I only need blood test and don't need scans now is the right time. I have to have my red and white counts in the normal level for surgery. I figure I will be skipping Ibrance in December and part of January. I am a high estrogen positive so I am hoping letrozole will carry me during that time. That makes me nervous but not as much continuing with pain for another bunch of month before having surgery. I am less and less able to do things. I need a light at the end of knee pain tunnel. Part of my issue is the higher dose naids rip my stomach apart and now that inflamation becomes and issue with pain management and cancer. Tylenol was helping but now with the burning sensation from bone spurs they no longer work. I have every appointment I need scheduled. I might adjust a few after I see my new MO after Thanksgiving. I am even involving the palative care Dr. For pain management.
I decided I will deal with the now scan and every 3 month visits after the surgery. Priorities 😼
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Sorry, hope to not derail too much here, but brutersmom, i see you are on Effexor for aggression and mood swings. I suspect I may be having similar issues due to my current drug and was wondering how low a dose you can go with that? I just want to be aware that there is a potential drug solution if this doesn't calm down/cant be more effectively managed without drugs in the first instance. Was that something you were on before MBC?
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bruters, I’m so sorry you are dealing with pain that is becoming difficult to manage. Last month I had surgery for a rod placement in the femur. I’m on the mend but the first few weeks, the pain totally wore me out. I was exhausted. Everything, everything I did was harder and required more effort and it was depressing. I hope the palliative care doctor can help you with the pain management until you are able to have knee surgery. Thinking of you.
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sondraf letrozole makes me totally wacky. I started at 75mg but it had to be upped to 150mg. Best thing that ever happened to manage those side effects. Since starting them I have become my old self.
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divinemrsm. Thank you. I am actually more concerned about after surgery and not being able to take strong naids for inflamtion. They could give me a ulcer drugs for 6+ weeks but it interfere with Ibrance. I will stay on advil for now. I might look like some one beat me because it makes me bruise easy but keeps me functional. I have figured out how to sleep without pain which has been a help. My goal with the palitive care Dr is to figure out how to get through the surgery and recovery with minimal pain and the most freedom.
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bruters, I like your goal. I am allergic to nsaids and Advil (ipuprofen) so I took Tylenol or arthritis strength Tylenol after my surgery. I was prescribed 10 mg of oxycodone which I took for a couple days, but quickly cut down to 5 mg only at bedtime for about a week. I don’t care for the constipation it causes and it also gives me a headache but tolerated it long enough for the initial pain and to get a good night’s sleep. Ice helped some and I think you can get an ice/gel pack wrap specifically for after knee surgery.
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@brutersmom has anyone mentioned celebrex to you? Not sure if you’ve already tried this?
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@brutersmom, have you tried any opioids? I am allergic to oxycodone so use tramadol. It is a "moderate" pain reliever. I used it after my mastectomy and it worked fairly well for that. Right now I have a prescription for my back which can be excruciating at times. I only take it when I need it and take the lowest dose so I can drive and work while taking it. It does not get rid of the pain 100% but it takes it down quite a bit. It was such a relief to finally have some pain relief! I know what you are going through! Since you are hopefully getting your knee repaired, you would only need it now through after surgery. Would they consider that?
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