Ibrance (Palbociclib)
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Dianarose, I'm so glad you're feeling no pain and pray each day just gets better.
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DianaRose: glad to hear that the pain is under control. Step 1 is done. Now on to healing. Sending gentle hugs to you.
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Dianarose, so glad that your procedure is over with! Hope you will be feeling much better soon
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Diana, you have been through IT, friend. How are you doing now
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Saying hello from Costa Rica where I'm spending 10 days with my young son and another family. We're having a wonderful time and I feel so blessed to be able to handle the heat and high volume of activities. We've ziplined, snorkeled, taken a boat along the guanacaste coast, road a jet ski, spent many hours in the pool (and the pool bar) and ocean- both of which are so warm, and so much more. I feel fantastic. No pain. Relaxed. Recharging. And still have 4 more days in paradise.
Please don't put off trips or anything that brings you joy. I feel this trip is doing me so much good physically, emotionally and I hope oncologically.
Hugs to all,jen
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Dianarose, so happy you're feeling no pain, I pray the worst is behind you and it's smooth sailing from here on in. If you've got any extra drugs, send them my way :-). I woke up today with a terrible backache and have been icing it off and on all day. I should have known it was coming, since I haven't been able to exercise much due to this stupid plantar fasciitis and then I wore terrible shoes for a couple of days. Stupid! Have an appt. with my back doc on Wednesday. Sure hope he can work miracles. It's always something, I know it's nothing compared to your issues but it's just one more thing to deal with. And I know we are all tired of dealing with stuff!
Sending prayers and hugs all around
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((Dianarose))
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Pain is much better today, thank God. I have diarrhea but thinking it could be from IV pain meds.MO is doing a tumor marker Thursday and worried it will be higher from all the kidney inflammation. What a crazy life we all live now. DH is sick with sore throat. Praying I don't get it.
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Praying for you Dianarose, and for a cure for all.
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Glad to hear a bit of good news for you, Diana. I hope that you don't pick up a cold from DH.Keep the hand sanitizer at the ready.
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So glad DianaRose is feeling better.
Sadie-How are you doing? Is the shortness of breath getting better?
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Jen- How wonderful for you! Instead of "No pain, no gain", the saying should be "No pain, no pain!!" Enjoy Costa Rica, I hear it is a magical place and I'm sure your son will always remember this trip.
Faith- I had horrible, terrible, no good, very bad plantar fasciitis in both feet for more than a year while on hormone therapy, I hobbled all over Italy on a trip with my daughter, tried all kinds of custom orthotics and stretches/PT to no avail- It was what induced me to go off of hormone therapy after seven years, only to have the cancer come back a couple years later (should have never gone off of it!). It had never occurred to me it could have been a consequence of the AI, and my doctor denied it, but when I read someone else was having this trouble, I thought I'd go off of it to test, and sure enough, the pain eased up right away. Another clue that it is the drug side effect is that it affected both feet (unusual) and that none of the standard therapies for that were doing anything to relieve the problem!
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DianaRose- Have they given you something to cut the inflammation from the kidney? Some kind of heavy duty anti-inflammatory drugs? Could assist with the pain control..
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Thanks for checking up on me Chicagoan.
Unfortunately, the SOB is still hanging on combined with the fatigue that Ibrance likes to throw at us. While initially I think there was something else going on (possible touch of pneumonia?), now I think the SOB is primarily due to my low hemoglobin. I'm okay as long as I don't do anything... ha... but walking the dog is a bit of a struggle again as I have to keep stopping to catch my breath. Still waiting to hear back from my MO on the results of the CT scan but since the coughing has improved I don't think there is much to see.
On the positive side, my lung appears to have well and truly dried up - hooray. Yesterday, after a week, there were about three drops! It's amazing to me how quickly this happened as a couple of weeks ago I was still draining 700 mL twice a week. It was like turning off a tap! Hopefully I can have the catheter taken out soon which will give me more freedom again. Maybe I can plan a trip!
Wishing everyone minimal side effects!
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So glad Diana, that.you are doing better.
Sadie, sounds like great news from you. Hope you get the catheter out and take a fun trip!
Hugs and prayers everyone
C
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Sadie-Great news about the lung drainage drying up! Hope you can get your catheter out soon. But I am concerned about the SOB-hope the CT yields some answers so you can be back out romping with the real Sadie.
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5 minutes ago Hopefulgirl wrote:- sorry got the cross reference same post under bone mets too
hello ladies - thank u so much for your input and tips. I have been on ibrance and letrozole for 13 days now. I am responding well, no SE and good blood counts. MO ,ensured tupmour and is is down slightly too I'm that short time. We r still fighting with insurance about th $10,000.00 annual cap which means I am short 1500.00 dollars for my second script. In addition not sure what to do about the rest of he Year. It won't tale long to go through a lot of savings at 5,700.00 per month.
My MO Suggested yesterday to take letrozole alone (until the provincial govt in Ontario Canada adds ibrance to their formulary which they are hoping will be in the next few months - but who really knows) along with Xgeva. Your input and thoughts would be greatly appreciated. My other thought process is pay until the new year at approx 30k and then my plan will kick in another 10k cap and I will be on ibrance until at least next march 2018. And just maybe the provincial govt will have added it to their formulary by then. Your thoughts and input would be greatly appreciated.
Thank you Cathy
Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Update.. My MO called and the CT shows that I still have fluid in my lung but it's loculated. As a result the catheter is no longer draining it. That may explain the SOB although I am still not convinced that the hemoglobin isn't part of the problem. (He seemed unconcerned as it is still above 10 but this is quite a bit lower than normal for me. I also suspect that tomorrow's bloodwork will show an additional drop as my blood is on the way down, not up, given where I am in the Ibrance cycle.) The other concerning news is that the CT showed that the bone mets are worse. MO seemed less concerned about this as he mentioned not having a good reference for the bone mets but I found the news decidedly unsettling.
So, MO going to consult with the thoracic surgeon re: the catheter and the fluid. Then we need to figure out what to do. I'm not convinced that I am not responding to the IA/Ibrance combo but nor am I entirely convinced that I am. Seems I back in limbo a bit. I do know I hate burning through treatments. I know that there are a lot of options in the toolbox but it's a bit scary, particularly as the hormone therapies tend to provide the most bang for the buck in terms of PFS. Sigh....
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Thinking of you Sadie sending healing positive thoughts and prayers.
Cathy
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Sadie - I will be praying this will work.
Hopeful - I got 3 good years on Faslodax alone. Hopefully this will work for you also.
Hugs and prayers
C
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Hi ladies. I hope everyone is getting better. I get to start my ibrance again and xgeva after a month hiatus due to mouth abcess. Kinda scared to start it again but scared not to. Prayers and hugs for all
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Sadie,
Prayers for wisdom for you and your medical team as you figure out the best way for your body to heal. I hope you have a peaceful evening-we have to claim the peace God has for us even in the midst of uncertainty.0 -
Hopefulgirl,
This is a tough decision. If your MO is recommending you do the letrozole alone for a few months, pending govt actions, I would try that, assuming your bone mets are not so extensive that you are in danger of paralysis. I was on letrozole for a month before adding Ibrance and saw tumor shrinkage just from the letrozole, so you may want to take that chance and conserve your financial resources. So much depends on your personal situation. Prayers for wisdom as you discern your next step and prayers that your province will approve funding for Ibrance soon!0 -
Mel -you go girl!!
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Big hom -wow!!! That is good news.
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Jen, enjoy every moment of your trip. You deserve it and I'm sure it will do you a world of good in all ways, especially oncologically.
Cure-ions, Thanks for telling me about your plantar fasciitis, I'm definitely going to ask my MO to switch me to Arimidex. After reading the whole insert today where they report trigger finger problems, I'm sure it's the cause. Trigger finger has to do with the tendons so I feel sure the plantar fasciitis is related. Now the big question is, will arimidex have the same side effects
Hopeful girl, I would try the letrozole alone since that drug does good things on it's own. Save your money for now and maybe the letrozole will hold things at bay until your government gives approval.
Sadiesservant, don't give up on the Ibrance yet, sometimes it can take awhile to show results. I'll pray that things improve soon.
Mel, good news. I can understand your anxiety but I'll be praying you have no setbacks again.
Prayers and hugs everyone.
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thank you Faith. It is so good of you to offer these words. I am really going to have to have a few nights to ponder. I would of course love to stay on ibrance as i notice there is so much more less pain and I am only on my first cycle.
Cathy
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Hopeful - In hindsight, if I had known what I know now about MBC treatment ... and I hadn't been frightened out of my mind, I would have started letrozol first and added Ibrance later. If I had I would understand whether letrozol works on my cancer on its own and what the side effects of letrozol alone are. It is a very strong drug in both respects.
I also think there is a strong argument for holding Ibrance for a second line treatment with faslodex or other hormonal.
I spend money out of my own pocket on cancer treatment, on the scale you are contemplating. This is not where I would spend it. Ibrance is not a miracle drug. For many it just buys months. And when one should deploy it in the treatment protocol has, so far, been a marketing decision, IMO, not a medical decision. Later could be better, but the bigger market is first line treatment so ... guess where we deploy it.
>Z<
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Thank you Zar I am terrified out of mu mind but hearing from everyone is helping me a great deal
You make very good points here. I will see where the funding goes if it does not happen I may be on letrozole alone. I worry about the large tumour on sternum and behind sternum. Will letrozole shrink these tumours? What drug shrinks the tumours?
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Hopefulgirl, Letrozole keeps the body from turning androgens into the estrogen which feeds ER+ cells. Stopping that process should slow down or stop the cancer cells from growing and dividing. If I had it to do over again (even though Ibrance has worked quite well for me), I would have tried my AI (Arimidex) for the first three months to see how it worked. I think you can have great confidence trying this. I pray that is so.
Faith, (Knock on wood) I'm hoping Arimidex + Turmeric does not cause me to have the foot problems. My feet were in terrible shape with Letrozole but my doc was sure it was Plantar Fasciitis. It wasn't. I pray you change and get some relief but you also might think of just adding the Turmeric. (If you and I already talked about this, forgive me; my brain is foggy!)
I hope all of you feel better soon. You are covered by my prayers every day.
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