Ibrance (Palbociclib)
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Hospital finally got me in. Got up in so much pain and tons of nausea. Took a nausea pill then threw up. That worked well 😖. They ended up having to knock me out half way through the procedure as the pain was unbearable. Now I have matching pee bags on each leg. Can't believe this is happening to me. Wt
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Love that Dianarose! So glad you are home! Take care of you.
Hugs and prayers
Claudia
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Welcome back Dianarose. You have been missed. Hope you get some rest and are feeling better soon! Love the picture. Yes Cancer Sucks!!!!!!!
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Today I'm spending lots of time in prayer for all of you. I'll be thankful for all the good news and will ask God to turn the bad things around. May all of you feel surrounded by a circle of love from your sisters here today and through the week-end.
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AMEN.
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Praying for you Dianarose. Nothing to add to the loving and caring posts above, other than I second that.
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Thanks for all the prayers. I truly believe in them. It's been a tough couple of weeks. I am sitting on my porch doing nothing but enjoying being pain free this afternoon.
You are all like family to me and love you all 💕
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Dianarose.....lifting you up0
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this thread moves so fast.
Delighted for Lucia and Jen on such positive results. So encouraging to hear. Airlinegal good results too.
Rest up Diana rose. You and Gracie are in my prayers. I pray a lot! So does my mum. She has candles lighting in all the churches in Ireland!!
Thanks for the article Z. Interesting timetable. You are very hard on yourself. You had a tapeworm recently and a bad fall so that on top of our unpredictable fatigue days that is a lot to deal with.
Wishing everyone pain free days.
I started cycle 4. Stable and improving has lifted my mood. I hope this continues x
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Hi ! I am glad to see you post Diannarose and pray for you to get stronger.
This Wednesday I had my sister and brother in law take me to a concert that I had been planning to go to. I bought the tickets prior to knowing I was stage IV and planned on driving myself and meeting friends at the concert. Instead I needed 2 people to chaperone me and am now achy and wiped out.
The real kicker is I only made 10 days on my first Ibrance round and that was about a month ago. I would think this break is long enough to get the Ibrance out of my system. So, I guess cancer and falsodex are kicking my behind.
I hope to start Ibrance at a lower dose (100mg) on Tuesday. I just need to see what my blood work says. The MO offered to keep me off Ibrance for a couple of months. But, I found that idea frightening. Still, living my life like an old lady is hard.
Today my husband became frustrated when I told him I am in pain and I won't take a pain pill because I know a pain pill won't work.
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JFV- sorry you are in pain. 😓 Every pain pill I have tried makes me throw up. I asked my husband what the hell are they going to give me when I'm on my death bed
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Dianarose when I had my knee replacement I could not tolerate the pain medication and would be nauseated. My dr gave a pre nausea pill and was able to tolerate. Have you tried that?0
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Dianarose~ there will be no talk like that please!! 😊😉 you're a warrior ! Hugs! ~M~
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Dianarose I am so sorry nothing is working for your pain. Maybe a nice massage would work when you are feeling better ?
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sorry if I have cross posted,but this applies to us all and our everyday dealings with people. Hugs to you all and prayers as well!
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So true. I guess we expect too much sometimes. I never understood breast cancer until it was me.
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hi dianarose glad to read you are home ..so many kind hearts here amazing strength very uplifting
Wishing everyone good vibes cheers bright
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Good morning lovely ladies, here's hoping everyone is feeling good enough to enjoy the day. We have our two year old grandsons birthday party today. It's nice just to be around family .
Have a blessed day everyone 💕
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Dianarose, I'm so happy to you see home and well enough to post. You will continue to be in my prayers.
Micmel, your poster is so true for all of life but I think especially illness of any kind. What's the other saying "walk a mile in my shoes".?
Let's pray we can all walk a mile without pain!
Hope everyone has a blessed pain free weekend!
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I see I am not the only one who struggles with nausea from pain pills. Typically the Zofran is enough to relieve it, the stronger stuff just knocks me out and I hate that. Fortunately I don't have a lot of pain these days, at least not enough to drive me to the stronger pain pills, so that's good.
One thing that I found to be extremely effective for nausea, and I know this might be controversial, is marijuana. I've used it for the chemo nausea and on occasion for extreme migraines that cause violent vomiting. Thankfully I haven't had one of those in a while. The advantage to smoking pot is that it works instantly, or at least it did for me, and it makes food more appealing which may or may not be a good thing. The down side is that the effect seems to be rather short lived. Your mileage may vary. Sorry if this offends anyone, but I won't take any weapons off the table when it comes to this cancer battle.
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Hi again
I have another question for you ladies. I have seen that there is a thread also for Faslodex and Ibrance together, but some of you were so kind to answer me about a week ago.
I'm doing really bad. I used to be active and had no symptoms of disease (except for the SE of Letrozole, the worst being joint pains - some days so bad I could hardly walk). But Letrozole failed me.
I started Ibrance 17 days ago. Everyday my tiredness has increased. Nausea, blisters, dry mouth, headaches, pain in my right side, constipation, joint pains continue (nurse said it's unusual, but a few do have it).
3 days ago I had my 2nd shot of Faslodex.Same day I started having terrible heat waves rolling over me. which have continued. Last two nights my eyes have been real sore. I wake up several times during the night with an intense itching pain in my eyelashes. Try not to itch because I don't want to hurt them. Also the last three days I've been so weak I can hardly do anything. I'm just sitting in my chair - can hardly cook, eat or do the dishes. Almost too weak to take the dog even for a very small walk.
Until this day I'm one of those that have been having ALL the really bad SE from ALL the meds I've had. Tamoxifen was ruining my life, so was Arimedex. I got lymphedema after surgery. I still have pain in my mastectomy scar almost two years after the surgery - and doctors just say that unfortunately some women do get this and I have to live with this - seeking help from a therapist. I do see a therapist every 14 days, but with very little result.
I'm a single woman with no children. Friends and family are living far away.
I just know that I cannot this. If I looking forward to more and more SE as each med stop working, I have to stop now - and take the shorter life span. I need to get out and have just a little life - at least for some months.
Someone who can give me even a shadow of hope - or advice?
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DianaRose, you cancer fighting badass, so glad you are out of the hospital.
JFV- nice work navigating the minefield. Fingers crossed the ibrance routine becomes routine in the next few weeks.
Lisabet - In my opinion, the hormone suppression is the problem and the side effects from Ibrance that really impede quality of life are minimal, relatively speaking. The problem is that ibrance does not work without hormone suppression (proven in trials, unfortunately) You have options besides hormonals and I believe that for some women the chemotherapies can be easier. I am also having a very hard time with hormonals, so I get this.
The challenge I have is that doctors seem to feel that I am "fortunate" to be on hormonal therapies because they are "milder". Maybe so, but I suspect that is not the case for me, or you. Unfortunately, no one is going to believe you that these debilitating side effects are worse than your options, but I do. You are going to have to put your foot down and tell your medical team how things are going to go from here forward
Consider and pray on the following options ...
- take a break from standard treatment for a limited time and see how it effects your symptoms. During that time, take extremely good care of yourself and eat well, and walk, and do things you enjoy. Continue to get monitored and scanned and see how you do. Ideally you want to start this new regime just after you have been scanned so you really test your plan. This takes balls, but can work well. ... or
- get a second opinion, explain you have decided to stop hormonals and you need options, ... or
- demand from your current doctor to be taken off hormonals and put on a non-hormonal treatment.
Your signature line has very limited information about your treatments and your current diagnosis and I do not know where DK is. But if you can clarify these points you may get specific suggestions about treatment options from this thread.I am deeply concerned that you are alone and dealing with this.... and in pain. That combination alone will kill you. I don't know what your financial situation is, but a cancer consultant, advocate who knows your local options for everything from treatment to palliative care could be a very good investment.
I know the folks on this thread will jump in with ideas and support, but there is only so much we can do. In the end you need someone who has your medical records and personal situation in mind to help you decide and execute.
In the meantime, sending hugs and prayers. I can speak for everyone here that we care very much that you get on the path that works for you. If that means letting go of this world, we support you. But what I sense reading your post is that you need a caretaker and advocate by your side, whatever path you choose.
>Z<
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lisbet, I echo what Z said. I took straight-up chemo when my BC first metastasized (Carboplatin/Taxol), achieved No Evidence of Disease and tried to follow up with hormone therapy > Femara. It did not go well even though I tried for 18 months. I then decided to go with no treatment and no scans for about two years. Some new discomfort sent me for a PET scan and my widespread bone mets were discovered. (The discomfort turned out to be from something else.) I don't regret my choice and will probably do it again if my quality of life diminishes to that point again.
All that to say, lisbet, that you get to choose the way you do this. I recommend a book called "Radical Remission" where you can read what many people have done beyond conventional treatment to get better. The author spent years interviewing survivors and, while her info is not based on clinical trials, she has listed the most universally "proven" therapies.
I hope you can find a group of caring people in your community with whom you can pray and share your concerns. There is much proof that connecting with others is good for your health. You might consider just walking into a church tomorrow and letting someone know you need to talk. Somewhere near you there is someone who needs you as much as you need them. I wish you were here so I could give you a hug but the most I can do is put my hand on this screen and hope you'll do the same. I love you.
Pat
https://www.amazon.com/Radical-Remission-Surviving...=sr_1_1?ie=UTF8&qid=1500755619&sr=8-1&keywords=radical+remission
Another recommendation. Amazon has it Used for less than $2.00:
https://www.amazon.com/Unlocking-Heart-Healing-Bri...=sr_1_1?ie=UTF8&qid=1500755461&sr=8-1&keywords=unlocking+the+heart+of+healing
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Taking one-fourth of a Phenergan (sp?) pill is the best thing I've found for nausea. Taking a whole one would put me to sleep for a long time so I opt for the tidbits.
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lisbet54- I had to go to the eye doctor because my eyes hurt so bad. Ended up being chronic dry eye from all the Med's. Restasis has really helped. Very expensive though 😖
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Hi Ladies,
Welcome Lisbet. You will find kind support, gentle hugs and sound advice here. I'm still a relative newbie but value the advice and friendships that develop here.
Well, I will find out Monday if I will remain part of your merry band. While I have only been on Ibrance for three cycles (should have started 4 today) I think my oncologist is leaning towards a shift to Xeloda. The problem is that my CT scan two weeks ago came back with evidence of progression in the bones. When I heard this initially I was not that concerned thinking it was growth of existing suspicious areas but now that I have the report I can see that I now have numerous sclerotic mets on my thoracic and lumbar spine as well as a few ribs.
The challenge I have is figuring out when that happened. I had a 3 1/2 months period with minimal treatment as I was on Taxol for two months before we decided I was not responding and then switched to Anastrozole which takes about six weeks to start working. And unfortunately, my MO had not been doing regular scans as he thought the diminished fluid in my lung would be a better predictor, likely as the existing bone mets were not confirmed, just suspected. I also get the impression he was a bit taken aback by the new mets as he anticipated mine would be slow to progress given the long period between original diagnosis and recurrence.
I'll chat with my MO on Monday regarding options (and more frequent scans!) but he may insist on a change despite the fact that it is unclear if I am responding to the Ibrance. I'm not really sure how I feel about the possible switch to be honest. I obviously hate burning through options at only seven months into this and I worry that Ibrance (or a similar drug) will be off the table if it is no longer a first line treatment but I must admit that I feel like Lady Ibrance is beating the crap out of me. I have had a terrible few weeks with issues with my Pleurex (which thankfully is coming out on Wednesday - woo hoo!), my lung (possibly due to the spontaneous pleurodesis) and now the fabulous Ibrance fatigue. My hemoglobin has been dropping, I'm having headaches and continue to be SOB when I exert myself despite the fact that my lung is dry. Add to these extreme pain from the catheter - I guess the surgeon undid some of the healing when he checked to see if it was clogged - I'm quite swollen where the catheter runs under my skin and had a rather scary experience post surgical visit on Tuesday with chills, nausea finally culminating in a situation where I passed out in the bathroom at 4:30 AM.
Like you Lisbet, I am mostly alone. I do have my 86 year old mother living with me but she has her own health concerns and is not able to provide support in the areas I need right now. Walking the dog has become a bit of an ordeal, the garden which I love is out of control and working full time is starting to become a challenge, much sooner than I anticipated.
Sorry for the long winded post everyone. DianaRose, glad you are home from the hospital and hope you pain is well under control.
Pat (the other one)
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Hello, otherPat (sadiesservant), I'm praying for you right now...for guidance in making a decision and for comfort. I met one person Thursday who got two and a half years without progression on Xeloda and another who now has no evidence of her lung mets with Xeloda. I hope you will be another Xeloda thriver but don't stop coming here. You belong!
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Thanks Pat. Of course the Ibrance is not helping. It's making me so darn tired again (slept to after 7am - never do that - after going to bed early and then had a nap from 11:00 - 1:00 PM and still struggling to keep my eyes open). When I am tired I tend to have the weight of the world on my shoulders and resilience goes out the window!
I really appreciate the positive thoughts and prayers. It means the world to be able to reach out to those of you who really get this!
Pat 2
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Zarovka: Thank you for your kind answer. You are a beautiful person!
I have just started the 1 round of Faslodex/Ibrance. My first scan after treatment isn't until mid September. I planned to at least go through the treatment until I see if/how it's going to work. Although I am concerned that I learned from this thread that it may take 5-7 month before you know if it's working. Now I don't know if I'm able to go through with this plan. Right now I'm so miserable from SE. Chemo scares me to death. I really feel tempted just to drop everything and have some good months. I didn't have any symptoms, no local occurrence. Just liver mets. However they are many places and some of them are 3-4 cm.
I had so many side effects from other hormonal treatments before (Tamoxifen, Arimedex and Letrozole)
I have tried to update treatments/diagnosis and my profile, but find it quite a project.
Yes, I know my isolation is a huge problem. Before my diagnosis in 2014 I had planned to sell and move. However selling the farmhouse was impossible at the time and now I haven't got the energy to move (and maybe it's still impossible). I'm an intellectual living far out in the country among farmer families not socializing with childless singles. Because I wanted to have a lot of animals after my husband's death. I really enjoyed my life here and had so much fun as long as I was healthy - now I consider it probably the most unwise thing I've ever done.
I feel your concern and it warms my heart. Thanks again and wishing you all the best.
Pat: Thanks for the kind and concerned advice. Where did you have mets in the first place? Also bones like now? My onc. said I wouldn't live for a very long time without treatment. I have read some of the reviews of "Radical Remission". I do have a very healthy lifestyle - but unfortunately it has not benefitted me regarding cancer.
I will look into both of the books in the coming days!
I stopped Letrozole in June, because it didn't work anymore. In the couple of weeks without medication it felt like life and energy was coming back to me. The pains were almost gone, depression was lifting, weight was starting to come off. And now the SE from the new meds are kicking in.
I may choose to stop medication and have some good months. I consider doing some travelling but maybe it's impossible for me to buy any travel insurance at the moment.
Dianarose: I'm so sorry to read about all the trouble and pain you're going through at the moment. I really hope that better times will come to you soon.
It does scare me that you can get chronic dry eyes from treatment.
Pat: (the other one - Sadiesservant): I'm so sorry that you too have terrible SE from Ibrance. I hope that it will become easier on you. I see that you have almost the same history as I - also first diagnosed in 2001, but lung mets instead of liver mets. Just as serious! I really hope you get the help you need!
Again, thank you all for the kindness I meet here. These last days I have had waves of panic creep in on me from time to time.
However, this afternoon I was reminded of Is 59:19: When the enemy shall come in like a flood, the Spirit of the Lord will lift up a standard against him and put him to flight.
That showed me that I have to learn to do some mind and thought control instead of being a victim to fear and hopelessness. I believe your prayers attributed to this.
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Getting really nervous. Now that I have two naphostomy bags I realize that the left kidney is draining 2-3 times more urine. From what I read they should be about the same. Haven't been on any treatment for 2 1/2 weeks and have nausea and belly pain. I feel like the cancer has finally taken over. When DH booked a cruise for December the first thing I thought of was, I wonder who will be going in my place
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