Ibrance (Palbociclib)
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Can you believe what a big deal it is when you get sick while on some of these drugs? I had the flu just at the end of taxol and wow, I got the royal treatment, including a blood test from both my port and my arm. We are special.
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Tumor markers yesterday down to 42, started at 203 11 cycles ago! I'll take that!! Ct scan next week, insurance denied pet scan unless I have a "bad" ct scan.
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Lynnwood - Yes!!! So happy to hear your continuing news. The rest of us are hoping to follow you down, down, down. Great to hear!
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Robin - You are not alone here - I am getting nose bleeds, gum bleeding and fatigue on Ibrance round 2 #125. Required a blood transfusion last week. Seeing onc next Thursday (day 14) to see if I need to go to dose #100. But agree with Zills - anything beats iv chemo.
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Lynwood-that is great news!!! Happy for you!!!!
BABS
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Zills - Babs - Dani had cauterization to the nose, that helped with the bleeds. It may not be advisable for all, so I can't say, but just wanted to give you a choice.
Lynwood first fantastic for your nice drop on tm's. I feel so sad for you having to deal with all the evil ppl working at Insurances. Obviously a Ct does not show the same pictures as a Pet. And they KNOW docs like to have the Pet/CT at the same time for better understanding of whats going on. Maybe you could still fight it, I know it's so exhausting talking to them, but it may be worth it. Actually, Onco's office should get on the horn and explain. Every 3 month is very reasonable for Stage IV. Totally unacceptable.
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Just got diagnosed with a spot of bc mets in my lungs. This will be my fourth go round with BC but this is the first time I havebeen told I am stage IV. (After first diagnosis in 1998, had chest wall recurrence that also went up my back, a few years later had a malignant lymph node on opposite side, and now this.) My question is about ibrance. My onc is waiting on some biopsy report, but she is thinking of Femara (I have been on that before) along with the new drug ibrance. I am very well acquainted with Femara, but looking up ibrance I am a little leery of that. I am thinking that since I only have one spot (only 1.3cm and maybe another one starting but it is even smaller) that maybe I could just restart the Femara and see if that works alone. Thanks to SusaninSF for directing me here. I am rather frightened of ibrance.
How long do you have to be on ibrance? If you take it and your lesions get smaller, can you stop taking it? Should I wait and see if the Femara can shrink them all by itself? Thank you.
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arbojenn, I can't speak to whether or not you should add Ibrance to Femara immediately because I don't have your specific dx. But I can tell you that the SEs are nothing to fear. Yes, many of us get one or more SEs, and we do complain about them amongst ourselves here. But other than having to be more careful due to low blood counts, I don't think the SEs are all that bad -- or at least they haven't been for me. I can also tell you that there are several women in the FB Ibrance group I'm in who have recently reported big reductions in or even a disappearance of their lung mets since they've been on Ibrance. I totally get why you might think Femara alone could work and be easier, but I guess in thinking about it just as I'm writing, I think I would want to hit it hard from the get-go, if that's what your onc recommends. Another thing you can always do is get a second opinion, to see if more than one onc recommends Ibrance for you at this point.
Lynwood, YaY for the 42! That's a phenomenal decrease from where you started!!! And I wouldn't worry about a CT over a PET at this point. LIke MomATT, I was very upset and I went round and round with our insurance carrier (and we have a top of the line PPO) the first time they denied a PET request. But the truth is, CTs and an occasional bone scan give enough info to make wise tx decisions. It's a matter of picking and choosing your battles, and at this point, if you're doing well -- as you are -- I'm sure a CT will be just fine. But I agree, it's very frustrating to have our health choices dictated by people who clearly are making their decisions based on cost -- not what is optimum for us. Deanna
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Ugh I have cold/flu symptoms with a fever of 101.5 now. Also stuffy, achy, chilly. I am positive it is what has been going around. Does anyone know if we are supposed to get an antiviral for a situation like this, because of low blood counts? I tried calling the cancer center nurse hotline but they won't talk to me about the protocol or call in a prescription without my coming in. They want me to come in. That's a long drive. If they would tell me an antiviral is the protocol, I would go to a local urgent care and have them call the cancer center and get a prescription. Otherwise, why make an exhausting drive or have an exhausting wait at urgent care with sick people? If I don't need a prescription, I'll just wait it out like a normal person. Has anyone had a similar experience? (I see Ellelou got antibiotics but I'm pretty sure this is viral.)
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Lynwood- Wow!! I love that the TM are at 42. I hope Ibrance does the same for me over time!!
As for pet scans.... I go to Dana Farber and they will never do a pet scan ever to monitor me and my bone mets. My previous MO did a pet scan and when I asked why she was not going to do one she said she will have the best information from a bone scan along with ct scans.
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Shetland- I hope you feel better- I would think they would call in a script for you being your immune system is compromised. I would call back and explain the situation of picking up more germs by coming in.
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dbl, thank you! Another question: I see one of the common side effects are hair loss or thinning. Do a lot of people have that? Again, thank you!
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I want to thank all of you for posting. I am learning a lot.
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Arbo- I didn't really see much hair loss until my 4th cycle. I have definitely had some thinning of my hair this month. I also get a very tender scalp feeling that comes and goes and some of the members on the Ibrance FB group also have had this issue. I think it's a combo from both the letrozole and the Ibrance- Actually I think I have more SE from the letrozole than the Ibrance. The Ibranve is a miracle drug for this disease don't be afraid of it.
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Thank you, LovesMaltes! Is Ibrance something you have to be on forever?
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Shetland, I see it's been 8 hrs. since your post, so my thoughts from CA this a.m. might be too late. But with that fever and other symptoms, I would certainly try to be seen by a doctor. Can someone drive you to the cancer center? I also liked Carol's idea about calling back and explaining the distance issue w/being sick. But I'm thinking they might be afraid to simply RX over the phone w/that fever, in case they spot something that they feel requires closer monitoring -- like extremely low counts. If you have to go to an urgent care, I would certainly wear a mask. If you decide not to go and monitor things for a day, be sure to do all the holistic stuff you can -- Elderberry Elixir and high dose Vitamin C (maybe Emergence-C) -- things like. Gosh, I'm so sorry you're dealing w/this.
arbojenn, I've also had some thinning hair, and this cycle (#6) I've had that very tender scalp that Carol mentioned. But by "thinning" I mean more hair in my brush and on my clothes -- not anything anyone else would notice.
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I'm in the middle of my 4th cycle, and doing well. I had some chest wall recurrence that seems to have almost disappeared. My side effects include hair thinning, but I came off chemo so I'm grateful for every strand! No complaints from me, and I'd gladly be on Ibrance for ever and ever if it continues to help.
Wishing everyone the best!
Rose.
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Thank you dlb. I have decided that this drug might be not so scary afterall. You are making me feel much more hopeful. And Shetland, I hope you post how you are doing. I hope by now you are feeling better.
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Yes, I agree with Deanna... no one can tell that my hair is thinning except for my hairbrush and what lands on my clothes!!
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Another tip for visiting an Urgent Care. I went once with a UTI and explained my situation. They were able to seat me away from other patients- in a little nook by myself.
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Hi Arbo... I am about to start cycle 8 and have had some hair thinning but nothing too major that you can notice. After 6 months, my PET scan showed no evidence of metastasis in my liver. I had two very small lesions and never had tumor markers higher than 10. I agree as Letrozole is the harder of the two for me. Add that to ovarian suppression and I have killer joint pain. This combo has done me well and I have no other treatments to compare it too, so I am thankful that I am able to still work full time. The combo may do great things for you!! You came to the right place! The women on this thread have been a Godsend!
Monika
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Lynwood.
Cheers, cheers and more cheers.... Great result on your TM marker, I'm sure you are very happy.
Jenn,
Some of my lung mets have decreased and the remaining lung mets are stable. SE's have been few, the only difficulty is keeping the WBC above the required threshold.
Write your questions out and have a frank discussion with your ONC about your concerns in taking Ibrance and Femara together. As far as forever, I would rather do this than chemo.
Kathy0 -
I did the red devil for lung mets. It's tough.
I started back on Ibrance 100 and arimidex today. Very tired. Hope it doesn't last. Moms don't get the weekend off.
Shetland pony - you ok?
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arbojenn good luck!
Shetland how are you doing??
Zills moms are never off
Just to understand correctly, let's say the 21st day is Monday, the start day for the next cycle is on the eight day, so that would be Tuesday? Could someone explain. Thanks
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Hi and thanks Zills, Maltese, dlb, mom. I eventually got email back from my onc. She knows me and my blood counts, and she said I should be ok and to keep her posted, and did not require me to come in. She's so great. So I'm just lying around watching movies and napping.
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HEHE good for you
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If you started on a Tuesday, you take it for 21 days, wait a week (days 22-28), and start the next cycle on a Tuesday, and that is day 1. You will start each cycle on a Tuesday, barring any extra time off that the doctor may prescribe.
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Happy Friday ladies....
So I am at my monthly appt and waiting for my Zoladex shot at Johns Hopkins. I meet with my nurse instead of my onc today. All is well except my WBCs are low but not low enough to stop Ibrance. Letrozole has been a bear and I asked to get off of it so I am going on aromasin. I can go back to Letrozole if it deems to be worse. My nurse brough up (again) if I have talked to my breast surgeon... and what I wanted to do about surgery since it never happened in July due to my Stage 4 status. Last month my onc stated that he did really see it being advantageous and he is not convinced. She on the other hand was like it is up to me and they really don't know and the cancer could be worse it if reoccurs... I am so confused and they have differing views.
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Mdillard04, have you gotten a second opinion from a breast surgeon about whether or not you should get the surgery? That's not a decision to take lightly and it must be frustrating for you to have to deal with the differing opinions!
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Shetland, thx - I just wanna make sure that Dani is starting in the right day.
Mdillard are you NED? What do the mean recurrence? If mastectomy is so important, have they spoken to you about full hysterectomy? I can't give you an answer, you would need to speak to a lot of ppl, get 2nd and 3rd opinion if need be. Some surgeons would not see it helpful in doing a mastectomy for Stage IV women. The ovaries have a lot of estrogen, that is something to be considered. Good luck, it's not an easy decision.
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