Faslodex + Pablociclib(Ibrance) treatment combination -
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Is any one having their estradiol checked on a regular basis on this protocol?
My estradiol level was 15 the end of February and then I started Faslodex/Ibrance and the past couple of tests have shown estradiol at 153 and 164. I know faslodex will not work if your estrogen is high, so I am a bit concerned. I searched the internet and found articles about false readings of estradiol on faslodex and Oncologists should be more aware of this because they may be changing protocols too soon or mistreating based on the false readings.
Once again I have to be my own advocate because my oncologist has said nothing about this or my levels. Why does she test it, if she is not going to look at it???!!! I am the one who went back to my labs because she told me my estrogen level was zero!!! I was never zero only 15! So I'm looking at my labs and saw the high numbers. My fault for not checking my labs carefully and putting too much trust in her!!!! I mentioned to her about the high numbers of estrogen. She refers to me as peri-menopausal and puts me on Lupron shots! If I'm peri - menopausal then why in the hell do you have me on faslodex!!!! I am so frustrated with oncologists who do not take my health seriously!!!! I was told by a different oncologist 2 years ago that I was menopausal. I am on my 4th oncologist for the past stupidity, not being positive, or just plain lack of caring. Its exhausting following behind the professionals to make sure they are doing their job.
If anyone has any info on the faslodex/ estradiol connection please let me know.
Robin
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Z - very interesting information! Thanks for sharing it certainly gives me a lot to think about and agree with you.
On a side note, I took myself off of Ibrance due to my impending hip replacement surgery. I have to have my white blood cells and all the rest of my moving/healing parts firing on all cylinders so I don't risk infection. Surgery date still up in the air but a little 4 week or so break can't hurt, right? if nothing else, I'll feel closer to normal when I do go in.
Thanks again Z -
Amy
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Just posted this on the Ibrance thread, but thought I'd share here too since this is the combo I'm on - may it continue to work, for all of us!
Yesterday I had my first PET-CT scan since my Stage IV diagnosis in May, and it showed "significant improvement" in all previously identified lesions (and that was a lot - "innumerable" was how the original PET-CT report described it)! Those lesions are/were osteolytic, and they have become "more sclerotic after treatment" - which as far as I understand it means essentially the holes are filling in with new bone growth. There is also "significant decrease in uptake" in the lesions, and NO new skeletal findings or any soft tissue issues.
I hasten to add this is all my own, lay-woman interpretation of the report; I haven't yet met with my onc (will onThursday) and this is my first go-round with monitoring response to treatment. But it seems like very good response after 4 months on the Ibrance/Faslodex/Zometa combo (as well as acupuncture and medical cannabis - who knows, those might be helping too). It's definitely not NED (there's still uptake in multiple spots), but I'll take it!!Of course, as luck would have it I've got some pain today which I haven't had in a couple of months...but let's just ignore that for now, shall we?
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Hi Seagan, Congrats on a good report! I always like to see none or very little suv uptake!! Where do you get your cannabis?
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Thank you! Medical cannabis is now legal here in MN, though it's one of the more restrictive cannabis laws - you must have a physician certify that you have one of the eligible conditions (thankfully cancer is one), it's only available in certain forms (I take the oil in capsules and vape it), only two components are legal (CNB and THC), and you have to get it through one of the official dispensaries in the state. And unfortunately, because it's still illegal at the federal level, insurance won't cover it and it can't go across state lines.
It's been really helpful for me, especially for sleep. Wish it was more accessible, for everyone (including researchers)!
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Seagan,
That's great news especially after only being on the Rx since May. Are you at the original dose of 125 mg per day? Have you had any significant SE (side-effects)?
We're always happy to hear good news!
Amy
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Robin, How frustrating for you trying to find a good oncologist! I love mine, but still find I have to point out blood work that is outside of the norm, when I should be scanned next, etc. No matter how good (or bad) our oncs are, we must be vigilant and advocate for ourselves. Sorry I have no insight into your current issue with estradiol. Hope you are able to get answers soon.
AmyQ, I totally agree with taking yourself off Ibrance before your surgery. I did the same last Feb for minor surgery and had no bad consequences from taking a 4 week break. Good luck on your surgery! A friend of mine had hip replacement last year and I was amazed how quickly she recovered. Hope it goes just as well for you.
Seagan, That is a great initial report after only 4 months of tx! With that kind of response I wouldn't be surprised to see you NED in another 4 months. Sorry you are having more pain just now, but so happy for your scan results! And I truly believe pain can be due to healing, so don't let it discourage you.
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Seagan, woo hoo! Congratulations! The rest of the spots may disappear over time. It can take a bit of time.
AmyQ, good luck with the surgery.
Myself, I am off on Saturday for a two week, leave the computer and the e-mail behind, vacation. I can sure use one.
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Hello! I am new to the thread and have only read the first five and last pages so far, but wanted to introduce myself. I am 48, originally Stage IIIA in 2011, had bmx, chemo, rads. Was good until a PET scan in late July 2016 showed extensive bone mets. After a frustrating slow 7 weeks of further scans, bloodwork, biopsy and waiting for results the Stage IV/ILC diagnosis was confirmed. I started treatment with Xgeva, Faslodex and Ibrance last week. I will return for another set of injections at the two week and four week marks, and then will also have a scan (not sure what kind) at the four week mark to assess initial response. So far, I am doing fine, but do have waves of fatigue at random times throughout the day. I work full time and have three kids, and I am exhausted all the time anyway, so it's kind of hard to differentiate fatigue from the meds from fatigue from my life! Anyway, I hope to catch up reading and contribute some to the discussion!
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rpoole......I was having my estradiol checked prior to my hysterectomy. It measures how active your ovaries are. If there is any activity, I think "perimenopausal" is how they describe you. 15 is very low and so maybe some oncs consider that "menopausal." I might ask the question "How high can my estradiol level get before we worry about it interfering with the treatment?" I know it is common to have varying levels......especially close to menopause and while taking Lupron. Hope this helps.
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Jobur, thanks and yes I will remain to be my own advocate.
Kay, I had full testing for menopausal status 2 years ago that determined I was in menopause. They tested follicle stimulating hormone (FSH) and (LH) and estrogen. But I plan to repeat it, just to clear everything up. I googled Faslodex and high estradiol levels and have read where Faslodex can cause the estradiol reading to be falsely high. I don't think my NO is aware of this. That may be what's happening since my estradiol was 15 before starting Faslodex. Anyway I will def. get retested to get to the bottom of this.
Lemondrop, welcome to the thread. You will find a wealth of informative ladies here and lots of support. You might also follow the Ibrance thread.
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lemondrop, welcome! Four weeks seems like kinda short for a first scan. Faslodex can take a little while to work. Do check the "Faslodex Girls" thread. It has tips for getting Faslodex without pain.
I hope your scan shows improvement. You can take this stuff. It's just like menopause and lack of sleep :-)
(I work full-time too. yesterday I complained all day that I needed a nap, but today I woke up feeling excellent)
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Hi, I am still in cycle 1 of Ibrance. I took my last pill on Wednesday and will repeat blood tests on Monday to see if I can start cycle 2 next week. My blood counts tanked in week two, rebounded slightly during week three, but have to come up more by next week. Nothing unusual there really. The reason I am posting is to find out if anyone has experienced itchy hands and head with this combo. I don't have a real rash, just some little bumps on my hands. Of course, it could just be an allergy to soap or something. I tend to blame every little symptom on these medications.
Lynne
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Hi Lynne, Congrats on completing round 1! I have been on this combo for over a year and had other itchy bumps earlier on, but the last cycle (before this one) I had both itchy scalp and hands. I thought I had poison ivy at first, but sure enough, fingers started itching again this round, but not as bad. Does your whole scalp itch or only certain parts? Mine was from the crown of my head down to the nape and drove me crazy for a month or two but has now subsided. So you are not alone with this se and chances are good it may go away next round. Se's with Ibrance seem to come and go. They can be quite irritating, but nothing too terrible. Hope your counts rebound nicely and you are on to round two.
Welcome Lemondrop! I am so sorry you have been dx'd as stage IV, but there is a lot to be hopeful about so try not to let it get you too down. The first months of this are very difficult, but you will get to a new normal and find that life goes on. As a working mother of 3, you have every reason to be tired even before treatment! I'm sure your head is spinning after all the scans and reports, so hang in there, things will settle down eventually. And don't be shy about asking questions or sharing your feelings here on the forum, it is a great place for both information and emotional support.
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Good morning ladies,
Quick question have any of you had issues with being nauseous in the mornings. I've had to really pick my gym times . Yesterday was pretty sick while on the elliptical machine. Pretty far to the Lou so not something I want to repeat
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Thank you, Jobur. Pretty much my entire scalp itches. It is funny that you mentioned poison ivy, because that came to my mind at first, too. I can definitely put up with these minor annoyances.
Wendy, I have had some minor bouts of nausea in the morning, but nothing as severe as what you have experienced. Mine seems to improve if I eat something. Do you have any anti-nausea medication? I was prescribed one "just in case", but I haven't taken any since the nausea resolves without it.
Lynne
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Popping in to say hello and have a good weekend.
I had an MRI today to sort out arthritis in my hip versus bone mets. Fingers crossed the hip is arthritic, because that can be repaired. If it's mets I shutter to think what the future holds as I cannot live with a bum leg for the rest of my life. The pain prevents me from having a good nights sleep, even on heavy duty pain meds. It sucks - I hope it's arthritis, I hope it's arthritis, I hope...
Amy
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Ibrance is not available in Australia as yet but it is available on a trial combiend with Letrozole. I may be excluded from the trial as diabetes is one of the exclusions. Is anyone here diabetic and taking Ibrance?
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Hi ladies -
I am doing ok so far on the Faslodex/Ibrance. I have waves of fatigue here and there, but not too bad. I go on Wednesday for my second shot of Faslodex and a follow up with MO. I think she is scanning me again relatively soon to get somewhat of a baseline since at this point it has been over two months since my initial scan that showed mets. She warned that we might not see improvement, and in fact, it might look a little worse at this point, but hopefully the meds will kick in during the next few months.
So, the bad news is, while my insurance approved and is paying for the Ibrance/Faslodex combo, they are denying coverage on the PET/CT that I had back in July that showed the mets in the first place. They say it wasn't medically necessary, and doesn't fall within their coverage guidelines as I didn't have symptoms suggesting recurrence (which is not really the case; I am sure I reported some symptoms). But, I in fact have a recurrence! I obviously have to appeal this and work with my doctor's office to document why she believed it was necessary. What really makes me mad is that when I went for the scan, they had supposedly gotten prior authorization. Had I realized that it might not be covered, I might have tried to straighten it out with the insurance before actually having the scan. Now, I am potentially on the hook for $8700. Anyone have any tips for dealing with this for me?
Seagan - Great news; so wonderful to hear good news!
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Hi lemondrop, I'm sorry that you are having a problem with the insurance company about your PET scan. I don't have any experience with having to solve a problem like this, but I have been concerned that it could happen to me. A couple of times I was scheduled for scans and, like you, have assumed that I had prior authorization. I had the scan, and a day or two later received the approval letter in the mail. It's a case of which came first, chicken or egg. You should definitely appeal and have the documents to back it up. It's not fair that we have to deal with things like this. Best of luck and please let us know how it turns out.
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Hi everyone unfortunately this combo has failed me after four rounds. Moving to Xeloda in three weeks but first getting ten radiation treatments to my left femur and knee. I'd appreciate any input about Xeloda.
Aurora
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Aurora, I have no experience with Xeloda, but I have noticed that many people have had good results with it. I read the Xeloda thread while I was awaiting my current treatment plan because I thought that I would be put on either Faslodex/Ibrance or Xeloda. Hand/foot syndrome seems to be the most common side effect of Xeloda. Many people on the thread use a particular lotion or cream to help prevent it or decrease symptoms. There are many people taking Xeloda, and you should find a great deal of information on that thread. I hope it treats you well and kicks your mets to the curb for a long time. You are in my thoughts and prayers.
Hugs from, Lynne
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Hi Aurora - many ladies are doing well on Madame X (Xeloda), with the biggest SE being hand and foot syndrome. Read the Xeloda thread and get help from pros. Please check in with us to see how you are doing. I start round #11 very soon. My last TM was 38, healing sternum, but one spot on my jaw they may radiate. Lemondrop that is awful to pay for a PET - file an appeal with your insurance company, the results bear out the "necessity" of the scan and you should win! (())
Claire
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Aurora, I'm sorry this tx has failed you so soon. Hoping Xeloda will give you better results. Will the rads be for pain control? Hope they help! Best wishes to you and please let us know how you are doing.
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Hi Jobur, yes the rads are for pain in my left knee and also in my femur to kill cancer cells, thank you for your well wishes I'll see you around
Aurora
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Hi Aurora,
Here's the link to All About Xeloda
Very best wishes as you pursue a new treatment course!
well wishing, Stephanie
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Hello, all!
Just found this thread.
I was on Ibrance + Femara. Then stopped Ibrance and was on Femara alone. Now I'm being switched to Ibrance + Faslodex. My first shot is next week. I'll keep you ladies posted!
I'm going into treatment with clean bone scans and CT scans showing a dozen or so 2 cm nodes in the lungs. Coughing, chest pain, too.
Less nerve damage and difficulty walking (those were the reasons I got off the Ibrance and then off the Femara).
Here's a toast to medications that work with little to no side effects, and high quality of life for all! (Cheers!)
Sarah
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I should mention, I did the genetic test Caris Lifesciences offers (where they take the original tumor and try it against a number of different chemotherapies to see what will work best) and Ibrance, Femara, Faslodex were all on the list.
If you are on Medicaid, the test if FREE.
If you are on BCBS, the test is INCLUDED.
If you are none of the above, the test is $30,000.
Sarah
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Aurora,
Best wishes on the Xeloda. It was my first chemo. It was great! I was VERY active (still doing martial arts five days a week), able to walk, run, jump, eat whatever, breathe.
After a number of months (nine?) the side effects caught up with me - GI problems, and chest pain that felt like a heart attack.
No nerve damage after an initial bout of nerve damage that made my feet feel like they were on fire. Hands red and peeling.
But now I know how good I had it on Xeloda, and wouldn't mind going back to it. Hope it works out well for you.
Sarah
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Hello all,
I was dx'd Stage IV in March of this year and am now on my 7th round of Ibrance/Faslodex. My most recent ct scan and bone scan shows a lot of improvement in current tumors and no new growth so I am happy and so grateful for that.
As far as side effects, I have fatigue, some hair thinning, body pain and intestinal problems. The SEs are still better than SEs I had with chemo so I am trying to stay positive about the lack of worse SEs.
My doctor just prescribed adderall for the fatigue. I was already on it for ADHD so just upped the dose. It was nice to just increase the dosage on something rather than adding a new drug. I will report back with results once I have been on the new dose for a while.
My sleep is horrible. I feel like I have not had a good 8 hours of sleep since before I was diagnosed back in 2012 with BC! I used to be so good at sleeping - and I really miss it!
Take care all!
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