Faslodex + Pablociclib(Ibrance) treatment combination -
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Kimberly - What dose of Ibrance are you on? If it is 125mg, it would be a no brainer to drop to 100mg on your next cycle, IMO. It's also perfectly okay to stay off the stuff for an extra week and see if that improves things. The former takes a doctor to change the prescription. I think you should push for that even though your MO is out, given that you start your week off in two days. The later is something I have done twice unilaterally when I could not check with my doctor, although it seems that the nurse is on the same page so I would encourage you to do this.
I've never heard of hand/foot syndrome on Ibrance but, watching how people respond to this drug, it seems like old side effects from previous treatments can come back. Usually it is something like hair loss or low WBC counts but I have seen people report other side effects they had on other treatments that are not common on Ibrance.
You know my thoughts on anything that interferes with exercise ... I think this is very serious and you do need to take action.
>Z<
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Thank you Z and all,
I am taking the standard 125mg dose. I have a consulting relationship to another MO at Dana Farber who is very keen on this Ibrance/Faslodex combo for me (my MO in Mpls wasn't as keen on this combo and initially wanted me to take another combination of drugs) so I wrote to him tonight to see what he thinks.
I agree with you Z about exercise and feel very proud of myself for rehabbing my left hip after a second hip replacement surgery due to bone mets! In October I was getting 20 rounds of radiation, on Xeloda and in a half body cast! Walking five miles--two on the beach--feels like bliss! Just don't want sore feet to get in my way.
I definitely want to join your exercise thread Z. How inspirational it is to read how everyone is working to keep up movement.
Learning to be less socialmedia shy!
Kimberly
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Kimberly - Great plan. Please take fast action here and don't let that hand/foot syndrome get worse. These things tend to snowball and they are harder to reverse once they get worse.
>Z<
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Hi All, the first month of paclbo (125) and A/A [at half dose] crashed my neutrophils and platelets. I escaped a platelet transfusion by the skin of my teeth. Had to stop all palbo for two weeks and A/A for one week.
I feel fine though. Seriously. No side-effects that I notice. Blood notices. . .
Cycle two started yesterday with a reduction to 100 of Ibrance. We'll see how it goes.
Meantime the lumps in my rear are starting to fade, LOL.
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Thanks for the update, Pam! Sorry about the low counts, but glad you didn't need a transfusion.
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Pajim, good luck with your second course! Z, good advice on the UCLA onc on Xgeva vs a regular dentist. Should be light years difference in knowledge base.
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Pajim - glad you dodged a transfusion and switched to Ibrance 100, they have worked better for me re: fatigue and numbers. I get my PET on Thursday and start round #17 about a week later. I am rooting for you on this combo. Joyner glad you got info on Xgeva risks, our UCLA oncs are cutting edge. Deanna - how are you doing on Xeloda? Hoping it does the trick for you. Please stay on this thread and keep us informed. I spoke with Naturegirl2 (who started this thread) she is struggling with Navelbine and QOL. She had some major effusion problems, so rooting for her too. Plus she has that great Louisiana accent.
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had first checkup today after 1 month of falsodex and ibrance. Markers went from 115 to over 200. Dr says probably, hopefully, from dead cells as they can affect numbers. Anyone else have that happen? He isn't concerned as it can take a couple cycles to see change or if combo is working.
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Living,
I get labs today and my MO said she would be surprised if the TMs went down! Told me that TMs the first couple of months with this medication don't really mean very much. I asked if we could skip the TMs then since they just give me anxiety and she said they give her anxiety too!
. So we will take TMs this time along with all other labs to see how I am doing. In the meantime congratulations on finishing your first round of this combination and I pray it works for the both of us for a very long time!!Cheers!,
Kimberly
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Hi Livin and Kimberly - Agree that tumor flare can show up for the first few months on this combo, and hopefully afterwards they head down. Scans are more accurate than TM's so please don't overthink numbers. So tricky, but rooting for you both. I had a CT without contrast yesterday so results should be in next week.
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thank you. Makes me feel better. I just hope it works. 🤗
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Clair, sending prayers that your CT is unremarkable I.e. Stable or better yet NED. You need to stay healthy and in shape for those trips coming up. June will be here before you know it.
Livin and Kimberly, Claire is right, tumor markers quite often rise when treatment first starts and the cells die off. I have seen that happen so many times here from women on Ibrance.
Good luck to all of us, may we live a long time on this treatment.
Enjoy the weekend, everyone.
Faith ( in the future).
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You guys are freaking me out. I have had 6 transfusions in 5 months on Ibrance. They are finally lowering my dose to 100. Do you know something about transfusions I dont? Its just boring laying there. I am just mad the cancer spread to marrow. Anemia sucks
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Hi ladies, I'm piecing together information and I appreciate your wisdom! I'm currently doing rads on my spine and my currents meds don't seem to be stabilizing my TM so my doctor is thinking to switch me to falsodex and ibrance combination. I'm nervous. The side effects sound horrible. How did I get here?!x
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Chantal, I have had no side effects on the Faslodex + Ibrance combination so far. Please don't be frightened. Be happy that this wonderful combination of drugs is available to us, and hope that you'll be one of those who do not have side effects. We're with you.
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Chantel, I am finding the faslodex/Ibrance combination to be pretty easy. No one likes to get shots, of course, but if you follow the recommendations, you probably won't have anything worse than a slightly sore butt. Frankly, I haven't even had that since my second shot. The nurse that gives me my injections now is very good. I haven't had any serious SEs from Ibrance. My blood counts do go down, but I haven't been sick at all from that, and they rebound in 1to 2 weeks. I did have to drop from the dose from 125 mg to 100 after the very first month because all my counts tanked way too much and didn't rebound for 3 weeks, but I felt fine. The 100 mg dose is apparently working well for me since my scans have been good. I know that when you read the literature, the list of SEs is scary. I have to admit that I balked when my MO recommended Ibrance, but I am glad I gave in. My SEs have been minor and not constant- very easily tolerated. I actually feel quite normal. Let us know if you do start this combo, and keep us updated on your experience.
Lynne
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Chantel, like 50s girl, I haven't really had any side effects that I can lay to either Faslodex or Ibrance. My sinuses have been a little stuffed up, but that may well be due to spring blooming. First time I had faslodex, I didn't even feel the shots. Second time there was slight burning, but nothing more than that, I mean about a 2 on the pain scale.
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Chantel - The Ibrance protocols are all relatively easy . That doesn't stop us from complaining vociferously about the effects we do have, but many people have none. I would be very concerned about making a treatment decision based on TM's, unless you are ILC which you do not appear to be. Get a second opinion before you switch if that is your doctor's plan. We don't have too many great options for treatment, Ibrance is a good one but it is best to hold it in your pocket until you really need it.
>Z<
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Hi all-
I just had labs taken before my 3rd loading dose of Faslodex (previously was on Ibrance & Letrozole and since beginning of March, I am on Ibrance & Faslodex) and my AST and ALT both have gone up from the previous blood drawn 4 weeks ago. The increase was about 2 1/2 to 3 times the previous reading - before this latest draw my liver enzymes have been normal for a long time. My doctor thinks it's medicine induced. He actually said he thought it was Ibrance but I'm thinking it directly corresponds to when I started Faslodex. I'm doing bloodwork again in 2 weeks and then again 2 weeks after that. I will see the oncologist in 4 weeks. I'm not even sure this combo is working yet, but would hate to have to go off of it prematurely due to elevated liver enzymes!
Has this happened to anyone? I'm not sure how high liver enzymes need to be before they are dangerous. One test is the mid 100 mark and the other is in the low 100s. I'm not a happy camper right now. Just ugh!0 -
Chantal, I was on Faslodex+Ibrance for 19 mos, and it honestly was a relatively easy regimen. What SEs are you most concerned about? There are plenty of things you can do to minimize SEs if you get them. But remember, not everyone gets every SE, and I think the list of SEs for any drug can be way overly worrisome compared to what you or anyone patient will actually experience.
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Southersurvivor, I do know people who have seen their liver numbers increase while on Faslodex. It is actually listed as a common reaction to the treatment. The following is from the faslodex website.
- Increased hepatic enzymes (ALT, AST, ALP) occurred in >15% of FASLODEX users and were not dose-dependent
Lynne0 -
Chantal, Welcome to this thread I am sorry you have to be here but I agree with what others have said, the Ibrance/Faslodex combination has been very tolerable for me. Advocate for yourself to make sure that the injections are well warmed and the nurse injects slowly. The shots (for me at least) are less painful than a tetnus booster. My side effects have been very mild -- a bit light headed, sore throat, and bizarrely hand/foot syndrome which is not listed as a side effect. Pretty manageable overall.
Southersurvivor, thank you for posting and letting us know about your liver enzymes. I didn't pay attention to this possible side effect and, with mets to my liver, this is good to know.
LaLady, praying that your scan was a really good one.
I have been pouting and a bit blue this past weekend/week due to my white blood cells/neutrophils crashing and my tumor markers rising over 100 points since March 3rd. Having blood test on Friday to see if I can restart Ibrance 125mgs on time or have to wait another week. I know that both of these results are to be expected from Ibrance, but the whole tumor marker thing just gets me anxious!! I am now more than doubled since December. Sigh. I mean I totally feel fine -- no bone pain, no liver pain. Am walking 4-5 miles each day and doing my pilates classes but I could really use a break in the tumor marker department!!
Kimberly
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Hi all - Finishing up AFCI Locations (for film and tv) as booth girl in front of KY. Hair is fake, smile is real. Ibrance + fas round #17 starts Monday. Rooting for us all and keep moving! Kimberly you deserve a TM break. ps my CT tech noticed lumps in my butt. lol
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Great picture Claire, beautiful smile and the hair looks good even if it's fake. No one would know. Sounds like you're doing good. I hate to assume but I'm assuming your scan was good if you're starting rd. #17 on Monday. I'm in the middle of # 16 and feeling the fatigue. If I could just be a little less tired and with no leg pains, things would be good. I have my PET/CT scan on Wednesday. Here's hoping and praying we all continue on these drugs for a long time.
Faith (in the future)
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Lovely picture, Claire!
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Hi. I was just diagnosed with bone mets. My mo said he wants me to do Ibrance and Falslodex. Hopefully starting it April 20th. Does everybody take the loratidine for a few days around injection time? Also how iften do you do bloodwork and scans. Thanks for any help yall can give
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Melmcbee, I have never felt the need for loratadine. For post-injection pain I have used ibuprofen and warm showers, but last time I did not need these. Blood tests monthly. Except at the beginning, with Ibrance, they should do them every two weeks. My scans are every three months.
P.S. There is also a Faslodex Girls thread. I like to hang out on both.
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Thanks Shetland. I dont remember where I read about the loratidine. It might have been for something different My memory usnt that great anymore lo
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I just found this thread and had a question. I just got my second loading dose of Faslodex and each time I have gotten the chills really bad. They come and go. I wake up in the night froze and shivering. Has anyone else experienced this
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Melmcbee, I have heard using loratidine for Xgeva or Nuelasta shots but not for Faslodex. My side effects from Faslodex are local area soreness -- not general bone/joint soreness. With Xgeva I get almost flu like symptoms for 36 hours or so after the shot. So use the loratidine for that shot.
I find a walking for 20 minutes or so after the shot and then some ice or heat helps me the most with Faslodex shots.
Dianarose, I find my temperature is all over the place -- mild sweats and then chills -- mostly late in the day and at night. I stick with natural fibers as much as I can and am devoted user of a cashmere blanket which seems to breathe enough to keep me warm and cool at the same time.
Kimberly
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