Faslodex + Pablociclib(Ibrance) treatment combination -
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Anita, Z's post reminded me... I use a detox tea that has liver cleansing ingredients. I think it's important even if our liver function #s aren't all that off, just to help protect our livers from the meds we're on. Happy to give anyone a link to the one I use that I get at a tea and spice store. I've tried two or three different ones, and this is definitely the best tasting one.
And I just want to add.. Like Lynne, when I was dx'd at the very start of 2014, I truly believed that year could be my last Christmas, and I was also pretty sure the car I leased that spring would be my last. Well, here we are almost 3 years later, and barring an unexpected event -- which can happen to anyone, with or without mbc -- this year will be the 3rd time I'll be picking out a Christmas tree since my mbc dx, and the dealer I leased my car from is already bugging me to trade it in for the 2017 model. So take all the time you need to adjust to your dx, but just know that one day soon you will suddenly realize that you are "living with metastatic breast cancer," with the hope that there will be a lot more research and more tx options in the near future.
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<Z>, thank you for these wonderful words of advice. I will go on the Stage IV Fitness thread. Thank you for taking the time to write. I have had two bad days of complete mental breakdown. Hopefully tomorrow will be a better day. I will take your advice to heart. You seem to be so strong and know what is going on with this crazy disease. I feel like I'm just in a strange spot in my brain that doesn't seem to want to get out of. We spoke to my MO at Dana Farber today with a very good prognosis. He explained the liver enzyme issues and was really happy with the progress I'm making and wasn't alarmed by the elevated levels. He said that he believes they are due to my body getting used to the medications. He explained that how I'm feeling is great, and that the medicine is working by looking at my labs and me telling him how I feel. Tonight I feel a little better, but you sound like you are doing amazing. Keep going and thank you again for helping me with this. I'm new at it, but I start my 3rd round of Ibrance on Friday. I hope all goes well. Keep in touch and I always welcome all of your suggestions as well as all of the other great ladies that are so helpful on this site. I hope to get where you guys are, but I think it is going to take a while for me being so new in this game.
Thank you again,
Anita
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Anita - I am glad you got answers on the liver mets and thrilled you are connected at DF. Starting with a competent onc takes a big part of the drama off the table. Nonetheless I was a total wreck for about 2 months. Those of us a little farther along are all wishing you could skip that part. Not sure it's possible. All I can suggest is to take some small steps to get some control back. Perhaps start with Deanna's tea ... apparently, it doesn't taste too bad ... and voila! you are living with metastatic cancer.
We're always very interested in what DF doctors have to say. Not all of us have the opportunity to visit the premier cancer centers. Let us know everything ...
>Z<
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Z, I will be happy to share any information I receive from DF. So far my experience has been amazing!! Thanks again for your advice.
Anita
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Off the Xeloda thread and on to this one. Started Fas+I combo a week ago. So far, no noticeable SEs. A bit fatigued but I've been a bit fatigued since I was diagnosed with mets. Injection sites hurt for a couple of days but no big deal. Just hoping it will work!
I joined a trial that is comparing 125mg vs. 100mg dosages of Ibrance + Faslodex. I'm on the 100mg dosage.
Hugs, Susan
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Hi Susan - I am on the 100mg Ibrance + fas, switched after 125mg were too strong at 6mos. I am on round #12 of the combo now, think it helps a lot with lung and bone issues, and I am still working. I still get my left lung drained monthly, but no masses. My sternum and L1-3 were both sclerotic at my August PET. Problem for me was hair loss and fatigue, plus a pesky jaw met that I am getting rads for in December when I return from Germany/Austria cruise. Hope this protocol helps you!
(()) Claire
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Deanna, Thank you for the advice. I am thinking all of things you described. My last this, my last that. I hope I can regain some sort of control soon. I have anxiety that hits me out of the blue. I guess time will heal mind at some point. My family and husband are so supportive, but for some reason I feel like I'm on a journey all alone. Thank you again and I look forward to being where many of you ladies are soon. Have a good holiday everyone.
Anita
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Susan - Welcome and thank you for doing that trial. The assumption with cancer meds is the more the better, but it is becoming clear to me that there is no data to support this. And there is more and more data showing lower doses work well and sometimes better. I am on Ibrance 125mg, but my gut is that 100mg or 75mg would do the trick with less side effects.
Pondering experimenting on myself but in the meantime let us know how it goes.
>Z<
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I hope you're right, Z, because I started at the 125 dose but the se's were too much for me. I'm now taking the 75mg dose, with very few se's. So far, I'm stable. Next PET/CT is in Feb.
Diane
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I'm probably going to have to leave this thread and join the Xeloda one. I had 4 cycles of Ibrance and Faslodex. First cycle was the 125 dose and had to downgrade to the 100 due to neutropenia. Experienced neutropenia on that one and had to downgrade to the 75. Got 2 cycles of that one and unfortunately my monthly blood draws of Ca 15-3 showed big jumps in the #'s. Went from 174 to 202 to 327 to 601. So my onc took me off of the Ibrance/Faslodex tx's and is recommending starting Xeloda. Next week I'll have a bone scan and a CT scan done to see where and what any possible progression is happening. This is disappointing!!
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Proparent - TM don't necessarily track with progression. I wouldn't switch unless you have significant progression documented in scans. We don't have that many great options. Consider a second opinion as I am not sure your doctor understands letrozol/ibrance. TM's rise on this protocol sometimes as an indication that the protocol is working.
>Z<
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Like I said I am having scans next week, so I'll wait for those results before I panic! I hope this is just an Ibrance flair! Thanks!
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Good, it sounded from your post like your doctor had pulled you off ibrance based on tumor markers. That is a BAD idea. Stay on the ibrance until you have confirmed progression with scans. IMO, progression has to be proven by more than one scan at least 3 months apart with >20% change. Even the scans are not super accurate.
If you have ANY nagging concerns at all about the decision process, get a second opinion. Ibrance is new, cancer is complicated. It may take more than one good doctor to get you to the right treatment decision.
>Z<
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Good evening all! Hope you had a wonderful Thanksgiving!! ^^
I have a question -- I'm on Faslodex (500) and Ibrance (75) and have been having strong nerve pain/spasms, which are getting worse. I talked to my doctor about it and he prescribed Neurontin, to be taken twice a day. Have any of you ladies taken Neurontin before? Does it help? Any side effects to watch out for?
I'm a little nervous about adding another medication to my roster
Sarah
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Hi Sarah, I personally have no experience with Neurontin, but a lot of ladies on Xeloda take it. It helps with the hand-foot syndrome. If no one here knows you could ask on that thread.
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Hi Ladies, finished my first cycle of Ibrance last week. Was scheduled to start round two today but my white cells are too low with anc at .48. My MO and I were both pretty shocked. He thinks it might be more from radiation and not so much Ibrance. All my blood has been perfect until today.We are waiting another week and will test again. Did anyone else have counts drop so fast in the first cycle?
My Faslodex shots are going well, had another set today...just a little painful but not too bad.
My neck is healing great from radiation. I ended on Halloween and all the skin is almost completely healed.
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Oh yes Larkin, my counts dropped very fast within a week and a half of my first cycle of Ibrance 125mg. Ended up in the ER, was dehydrated and ill. My onc switched me to the 100mg dose after I recovered a bit. Same thing happened with that one although it took a little longer to manifest. Got switched to the 75mg dose then. My counts were low but still OK to continue.
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Hi all. I'm posting here for my brother (those stats below are mine though). He started Ibrance/Faslodex last Saturday and he's feeling okay so far. He came off Decadron steriod too so we're happy to see that his energy level is much better than just a couple weeks ago.
Yesterday he saw a radiation oncologist to see about treating mets under his arm and his back. But they don't have any guidance on whether to stop Ibrance during radiation or to keep it. His medical oncologist said there's not much info on it, except she thinks he should be ok with Ibrance during the treatments with close monitoring. We don't feel comfortable having him stop a treatment so soon after starting it, especially since we can't keep cycling through treatment options. A different oncologist said that Ibrance/Faslodex could shrink the painful spots and he wouldn't need radiation right away. So we're in a dilemma and the radiation oncologists are very pushy. They wanted him to come in for mapping this morning, but we delayed it because we aren't ready to commit. And we want him to avoid any unnecessary radiation exposure. And they said that in order to radiate his lower back it would go through his intestines, which he already has dealt with a LOT of GI issues that were very scary for a while.
So in short, does anyone here have any experience with Ibrance and radiation treatments?
Healing wishes to all.
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Hi lovingisiving, you can see my post just a couple before yours. My MO says he never does radiation at the same time as Ibrance/Faslodex because he did it to someone once and she had a terrible reaction because of it. As you can see, I started Ibrance the day after I finished radiation and it's turned out to be too much ever then.
Thank you for sharing your experience Proparent. I'm wondering what the next step will be in my plan but I guess we'll know soon enough
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LovingisLiving, since Ibrance not only significantly lowers WBCs and RBCs, greatly impacting both healing/wound recovery and also energy levels, mixing it with RT, which creates tissue damage and fatigue, does not sound at all prudent to me! I see that you're in CA. Is your brother also here? If so, can he possibly get a second opinion at UCLA? They did the Ibrance trials (so 7+ years experience using Ibrance by now), and Dr. Slamon at UCLA was on the team that created Ibrance, so they know as much about it as anyone. Not sure offhand which other NCI institutions were involved with the trials, but you should be able to look that up. I think that's where I'd look for guidance, as well as experience like Larkin's.
And unless your brother is in excruciating pain, I agree with the onc who suggested giving Faslodex+Ibrance a chance to work first. It's done wonders for many patients, including me.
I can give you some contact info' @ UCLA if you're interested in pursuing that.
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Hi all, I see there are some new members taking part of the conversation. Welcome to you all. I am on Ibrance 125mg and Faslodex. This is just my second cycle. SE's not bad. Just white count low and my TMs have gone up.They are in the thousands. My onc mentioned he'd wanna switch me to chemo and I felt disappointed. I told him I did not want to go on chemo. But who am I to argue with my onc?
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roosarider argue argue, I have told my oncologist no chemo for me for the longest time. It seems to me counter productive to put something in my body that will destroy my immune system when I need it so badly now. Then I met a woman at the hospital with ovarian cancer as I was getting my bone infusion. She was stage four and had no issues with chemo at all. Hard to know what to do.
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Hey LovingisLiving and Larkin - just wanted to add few cents of my own experience to this subject. I just recently finished radiation treatment to my spine while on Ibrance and faslodex. I don't know about having any added side effects. It worked ok for me. Just need to walk in between treatments.
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Roosarider, Being stage IV, I feel it is my body, my life, my choice as to what tx I will or will not have. I have a wonderful onc who is my partner in making tx decisions, but I intend to have the final word. That being said, I "only" have bone mets and have not had to make any tough decisions as of yet, so easy for me to talk smart!
Is your cancer ER/PR+? What is your HER2 status? A biopsy of your mets is essential in choosing your tx. If you are not comfortable with your mo's opinion, please seek a 2nd opinion before changing tx. Also, TMs don't seem to be very reliable on this tx, so I would be asking for a scan at 3 months to see if there is any indication Fas & Ibrance are helping you. Wishing you the best in care and life,
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Lovingisliving, My heart goes out to your brother. Stage IV bc is a lonely disease for all of us, but it must be so much lonelier for men. If it were me, I would want to give the Fas/Ibrance a chance to work before doing rads unless the met pain in those area is intolerable. It would be good to know how he reacts to Ibrance before starting rads. It is very hard on some peoples blood counts, others (like me) have no problems. Hugs to you both.
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Thank you for all of the information, it really helps. He saw a radiation oncologist at UCSD and they recommended stopping Ibrance during radiation (3 weeks) and his medical oncologist agreed that it should be fine. Our goal is to reduce his pain and tumor burden in his body. We're trying to time it when he finishes one Ibrance cycle so we have a better idea of how Ibrance really affects him. He will keep getting faslodex shots during radiation, so he still has some kind of treatment going. From reading your experiences and with the doctor's suggestions, I think stopping it for 3 weeks (one cycle) might be the best choice.
He has been on a lot of chemos. Mistake #1 was starting on weekly Taxol, which caused him severe neuropathy and he had to stop it early. And almost two years later he's still dealing with severe pain in his feet. His oncologist then put him on tamoxifen for a few months which didn't work as well as we were hoping, then it went on to 3 more chemotherapies that didn't work that well. All through that time he should have seen a different oncologist but he refused. It would have saved him so much pain and time.
Wishing you all a peaceful weekend.
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Claire & others,
Thanks for the welcome. Yes I was started on Ibrance 125mg dose to start. My WBC's fell to 2.7 on day 10, it will be interesting to see what it is in 2 more weeks. I have a feeling he will lower my dose.
So far no gi upset, no indigestion or diarrhea. I take it with breakfast. Oatmeal with butter & fruit, cold cereal milk & fruit, bagel cream cheese & fruit, or English muffin, butter allfruit. I always have a cup of tea with lemon and warmed prune juice. The prune juice is to combat narcotic induced constipation. It works!
No vaginal bleeding after 2nd Faslodex - yay!!!!
As for the rads I had 2 double doses to start and then 16 days more. It has helped the sacral pain a bit, gave me new discomfort in the muscles they radiated through. This muscle discomfort they told me will be temporary and the bone remodeling takes up to 16 weeks. He said- it's not like crack fracture, it's a hole that takes time to "fill in". Makes sense. I am still on Dilaudid but 2 mg every 3 has changed to 2 mg every 5, a definite improvement. I still take methocarbamol ( Robaxin) for the muscles.The bone scan had nothing "light up" where hyper metabolism would be evident 2 weeks post rads. This was only ordered because I was going to join a clinical trial which got filled before I was done with the baseline tests. The rad Onc was pleased with my bone scan and said I was NED. (I had also 3 neg CT scans- pelvis, abdomen & chest).
Oh and I added daily 1/2 c (36 gm) broccoli after reading this: see 1/3 bottom of article: http://www.mcancer.org/research/stem-cells/breast
So my therapy is going well. I am taking it easy ( no lifting, twisting, heavy activity) post rads for the next month or two. My husband has assumed many of my historic jobs, mopping, laundry, carrying shopping. He is even cooking- oh my!
I am anticipating a great Holiday party at my home of my Breast Cancer support group Dec 15. Hope it's fun, it's catered, and I will hire a cleaning service the day before. So I can handle it.
Hope everyone else it doing well too.
Cat
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Cat - wonderful to hear you are doing well.
>Z<
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Hello everyone, I haven't posted on the Ibrance/Faslodex topic before but I've been following along and learned so much. I was diagnosed with Stage IV in August of this year. I have one measureable met and many other suspicious small spots in my liver. I just finished my fourth cycle of Ibrance/Faslodex. I had a Pet scan last month that showed that my liver met had shrunk in size and had a lower SUV, however my tumor marker has continued to rise. I saw my onc yesterday and he is concerned enough to order a cat scan and bone scan. He said that in his experience, my markers should have taken a downward turn by now. From reading this blog I know it takes a while for tumor markers to decline; is he being overly concerned? If four months long enough to see a decrease? Worried now and a bit depressed
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Hi DeeDee,
My TM's were jumping 200 points a month. I have been on the Ibrance/Faslodex combo for 5 months with a month off for a dental procedure. I had a PET/CT scan last week that showed stability in bones and significant improvement in the extensive liver mets. I will stay on the Ibrance/ Faslodex combo.
Good luck on your upcoming scans!
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