Faslodex + Pablociclib(Ibrance) treatment combination -
Comments
-
Funthing - you keep rocking. What is going on with your bc? 3 times? My UCLA onc has several ladies on Ibrance for 20 mos. Nice. Maybe a few long timers in here too.
0 -
Funthing, I'm also doctoring @ UCLA, and my onc (a different one than lalady uses) has had one patient on Faslodex+Ibrance for something like 6 years -- since the trial started -- and others for several years. As far as long range SEs, it's been my casual observation that women who adjust well to it seem to have -- if anything -- a lessening of SEs as time goes on as our bodies adjust to it. Those who don't do well initially due to exceptionally low counts or other very serious SEs, often continue to struggle even on reduced dosages. But that's just my overall observational impression.
So glad you like your onc, Kay. And I'm also extremely tired going into my off week. It's totally due to the low counts. And I always have to wait a few extra days for my counts to rebound enough to start my next cycle. But that's preferable, I was told, to reducing the dose -- as long as your counts do rebound within those few extra days.
0 -
NatureGirl...I am so sorry for your incredible loss! I send you prayers, {{{hugs}}}, and strength!
0 -
Deanna and Lalady
Thank you so much. I had been slightly upset because there was no information. The skin mets seem to get slightly inflamed after I started ibrance and falosadex.
I think it was because I stopped the Aromasin which is steroid based??
I was so afraid of Ibrance and do not even know why. Thank you so much for this extra information and support .
As fas as my hx line I will quickly fill the rest in for what I left out.
2014 July finished TCH . Sept. Ended up with Skin Mets locally. Rads to this region to take care of this. Aromasin and lupron.
Finished in March 2015. Three mos later I noticed a tiny little bump in the middle of my chest. Like a pimple. It didnt grow but became hard. My tumor markers 34 after treatment onc not to concrrned . Markers had never been more than 22.
Another routine f/u onc called me markers up 66 approx.
Pet scan ordered now nodes on the left axilla and tiny maybe 2 nodes in Pect region. I never had lymph involvement. Until now. I have only had BC on the right.
So Falosadex and Ibrance.
0 -
Furthing, aside from the women who have been in Ibrance trials, there isn't a lot of knowledge about this drug. It's too new. We're all being treated as per the label. If this drug was 5 years old, the docs would know a lot more about it's limitations and how to dose it, when to stop and start, etc.
Six years on this drug means someone who was in the very first trial!! Can't be a lot of women like that. Good for whomever that is.
0 -
This is exactly my point. This should be up front knowledge not some onc. Pushing trials and Ibrance when they havent even figured out what really is fueling the individuals cancer. Not every treatment works for everyone. Much more care should be taken with the initial dx. Study the indviduals cancer.
having skin mets occur.
Im sure if my tumor markers went up during chemo or shortly there after they should have been followed more closely. Why keep a person on a hormonal treatment longer than needed to be if its not working. Why keep a person on a treatment for 6 mos then tell them they donot have the emymzmes to metabolize it.
Really. This shiould be figured out much quicker perhaps before pumping garbage into your system without it being effective. Then scratch your head in bewilderment. Seriously. This is standardize care.
Her2 positive but only a slighly. Herceptin oops now she has skin mets.
Flaming Er.ki9 50% did not take a second look. Because why my tumor was cute and small.
Lets Not cluster everyone in a group. To see who fails treatment then scratch their heads hmm.
I had a 4 % chance of my cancer would come back.
I never had node envolvement Now I do on rhe opposite side.
My cancer came back 2 mos after TCH. Sorry I do not mean to whine.
Yeah we get it we have cancer but lets try harder than the weather men.
This is my rant and by no means am I condeming Docs.
Ive been everywhere with barely any diffrence in treatment and thats what pisses you off.
There is definatly a fear factor envolved when treating cancer. I get it.
Sorry for any typos spell check is off and I do not care Lol.
0 -
funthing, I hear your frustration. Unfortunately, genomic testing -- as promising as it is -- is not yet at a point where it works well enough for it to be the standard of care for everyone. My onc, who is truly on the leading edge of research, says what looks like it should work for a patient based on genomic tests, often doesn't in real life because there are so many complex processes going on in our bodies that cannot be replicated in a test tube. And for the most part, which drug(s) are recommended by our oncs are (or should be) based on trial results. But sadly, no one drug works for everyone. But if you truly feel like your onc is doing a hit or miss thing, I would strongly recommend getting a second opinion elsewhere -- ideally somewhere where they treat so much mbc that they have seen cases similar to yours, so WILL have valuable experience to draw on.
As far as keeping someone on a med for 6 mos without assurance it's working -- I think that's only true of Ibrance, and the reason is b'cuz that's what the trials showed -- that for many it doesn't kick in with measureable results until around the 5 or 6 month mark; but when it does then, it can be quite dramatic. I think most oncs would quickly pull us off a med at no more than 3 mos. if they had a clear indication it wasn't working.
As I said earlier, I totally get your frustration, and I think we've all been there at one time or another in the course of our tx. Cancer can be so sneaky, and I think sometimes we forget that some things aren't evident until they're in hindsight. But thinking back, the major mistakes in my care and the frustration like I'm hearing in your post happened before I went to UCLA, which is why I'm wondering if you're being treated at an NCI-designated cancer center, and if not, if you might have more confidence in an onc at one of those than it sounds like you do now? Deanna
0 -
Deanna thank you again. I have been to multiply facilites.
I have to stay close to work. So Im a little hindered.
This is the frustration. 3 out 3 said the same thing when it was all said and done. I think one was swayed . I just asked the question that bothers me the most. Why not remove the effective nodes. One is completely taken over by BC cells. I will need to find someone. My problem is Im very trusting. I didnt see the flaws . As you said hiindsight 20/20.
Tamoxifen was the drug in the begining that I was not able to break down.
I look at past treatments that where very effect. Women 20 yrs out 30 yrs out and the now just recurrence. These meds are no longer available. Oh yes this was a very good drug but no longer used what the @##@#$$$$.
Im sorry Im repeating myself.
Defintely lucky you are on this thread. You talk very rationale just what a mind needs that is in shock and has run a muck.
0 -
Unfortunately, I think we are all trusting initially because we have no way to evaluate our care until something happens that makes us question it.
And I thought you might have been referring to Tamox. But if it makes you feel any better, one way to look at it is you might have had a recurrence even if it was working for you. I've sometimes wondered if some of us simply have genes programmed to become metastatic, no matter what we do or don't do.
Glad to hear you've had multiple opinions. As far as removing affected nodes, do you think maybe some of the rationale for not doing that is that they are there to do a job, and taking them out will leave you more vulnerable in the long run? Plus leaving them in and seeing how they react to your meds will probably help your onc determine if something is working. But I can also see why you would want them out if they make up a major portion of your tumor burden.
So which drugs are no longer available???
0 -
Yes thats one way to look at it. You make perfect since.
Im just afraid the one node isnt doing much because path report stating that it was completely taken over and my arm swelled slightly.
My thought is that it is just regionally agressive. so just like bc when newly dx"d they take the nodes .Why not just biopsy them why remove them.
I do understand its in the skin lymph but strange how it just landed on this side. I was thinking more in terms that cancer is on the left the same way it would happen if my breast wasnt removed.
Sometimes I feel like Im in denial of how bad it is. Then everyone is in slow mod with treatment bw etc. Then I feel I must be not so bad off.
Its just a little trippy. Weird psychology thing happening ie looking glass self. Although it dosent usally pertain to a health dx.
I wrote the drug on a piece of paper . My life is a big sticky note. I will find it.
Thank you again for making perfect since.
How are you doing? Its easy to get self absorbed I should be over the shock. Sorry.
0 -
7 months in...Dr is calling me stable.. Staying the course... Feeling pretty good..other then my but being sore and bruised after yesterday's shot...
Any one do tumeric or any other supplements?
0 -
YaY on stable, keetmom!!!!!!!! And I do a ton of supplements. Always have, and I have tweeked what I take since my mbc dx. I swear by curcumin (from turmeric) for joint pain and highly recommend it. And I use a product that has turmeric in it as well (Inflamma-Less by Irwin Naturals). I also just picked up something to help with mood (haven't tried it yet), and one for sleep that worked great last night. Hoping it wasn't a one-night wonder because that is one of my biggest challenges right now -- getting a good night's sleep.
0 -
i just ordered some Tumeric on Amazon. How much do you take? Has it helped your cancer at all? Heard of someone with pancreatic cancer that it really helped...
(OKed it with oncologist because I didn't want to take anything that would increase estrogen)
0 -
Hi guys while talking supplements has anyone heard good or bad?
Vitamin D shots?
Melatonin?
CLA?
Coconut oils? Everyone seems to be using it.
I also started adding Tumeric. I heard its good for the liver.
I do not have a Integrated Onc.
Has any one tried types of alternative therapies reike, Saunas etc.
0 -
hi, had my pet/ct and don't have good news.... Ibrance/Faslodex didn't work. Everything got worse, brighter, bigger lesions. And more including a new 2.2 cm spot in my left lung. MO is 50/50 on lung mets as it's close to where my rib was removed and there's lots of scar tissue. He's gonna do a little more digging. Tumor markers are showing for the first time ever. Not triple digit high but higher than the 15-20 they've been for the past two years.
Soooo, starting Gemzar/Carbo on May 12th. Going back to monthly Zometa temporarily and continue with monthly Zoladex shots. The good news is I get to keep what hair has grown back, and no more daggers in my thighs!!
Also, I got some of those vitamin E/coconut oil suppositories from Carlson Labs. They have helped so much! Thank you for the suggestion!
I'm gonna check for a Gemzar/carbo thread but will keep in touch here too, k? Love you ladies, thanks for all of your advice!
0 -
ShelbyMarie, I'm so sorry to read that you have had progression on this combo. That must be so disappointing and scary, but I hope Gemzar/Carbo will be a great tx for you and you will get much better news on your next scan. Please stay in touch! Sending hugs and hope your way.
0 -
shelbymaarie -
i've gotten a lot reading your posts. you have tremendous courage and strength to face down a pet scan like that and write about it with such clarity and frankness. thank you and may your next treatment stop the progression.
0 -
I see a complementary oncologist and I follow a regime that i documented in a thread called pablociclib 2016. I have had good results in a short period of time. I give my complementary oncologist credit for most of my progress so far. I haven't seen evidence that letrozol or palbociclib typically get an "objective response" in 2 months. (still looking for feedback on that one)
My complementary onc likes his breast cancer patients on 2000mg of curcumin daily, and in a highly bioavailable form. But you do have to be careful. Curcumin (turumeric) has pharmacology that suggests it might interfere with both letrozole and palbociclib. That's not happening with me. My estrogen levels are pretty much zero. I feel the palbociclib build up in my body over the three weeks because of the side effects. I doing well on my regime. But take care.
I would find a doctor you trust who does complementary oncology. I started out like you reading and researching on my own. Since most of this stuff can be bought on line, a doctor is not necessary. But I am very glad to be under the supervision of a complementary oncologist. It's not simple to monitor the interactions and know what the correct levels of these supplements should be. I've had more side effects that actually needed to be managed from the complementary treatments. My complementary oncologist has made 4 changes to my treatment that were critical and that would not have happened otherwise.
Finally, complementary oncologists are often mavericks that operate outside the insurance system. There have been three issues where he has pointed out that advice my regular oncologist is giving me was informed by the limitations imposed upon her by the insurance or the medical system she works in. My regular oncologist is not bad, but it's important to understand how the system informs her advice.
0 -
Hi Zarovka and fun thing,
Z., great suggestion to get a complementary or integrative oncologist to pull together a supplemental treatment plan that includes supplements.
Most large and many small cancer centers now have integrative programs that offer everything from nutritional/supplement counseling to acupuncture to survivorship support to yoga, counseling and MBSR (mindfulness based stress reduction). Sometimes these programs offer grants or free "classes" or consults, so they needn't be cost prohibitive.Funthing, you mentioned liver mets, I've had them for over 2 years and have had many healing allies, including a diet based on colorful plants; exercise; no alcohol, smoking or personal/home cleaning toxins; supportive homeopathic and herbal allies and plenty of rest. On the liver mets thread, I mentioned a method of taking some drugs by other methods swallowing to avoid further taxing the liver.
The first pass effect:
https://community.breastcancer.org/forum/8/topics/...
If you are looking for one drug to heal the liver, I suggest spending some time looking at milk thistle.
But if you are looking for a holistic and accessible way to improve survival odds, nurture your liver and improve your QOL, I encourage you to follow Z.'s lead and find someone(s) to consult to coordinate your care...you are a unique and precious being and we can only give you advice based on our own experience and observation. Having someone to work with can greatly increase your confidence and effectiveness.
Healing wishes for all, Stephanie
0 -
Hi thank you for confirming in regards to liver Mets . Im trying to pervent any more types of mets. So far skin mets. I have no Idea how to control this. Im afraid to do any lymphatic cleanse for fear it will progress the BC I have in my axilla nodes. I doubt this is a rationale thought, but merely a thought.
Awesome feed back all
0 -
Shelbymarie, I'm so sorry to hear about the progression. I hope Gemzar will do the trick for you.
0 -
Shelbymarie - sorry to see your progression. Rooting for Gemzar/caro - please keep us posted. FYI my TMs were down on my April PET along with clear lungs. Wishing a good result for you soon!
0 -
funthing
I am very curious about peoples thoughts lymphatic cleansing or anything that gets your lymphatic system moving. I have a moderate pain in my breast in areas that surround the tumor. I understand that breast tumors themselves are not painful when they are less than 3cm. I believe it is plugged up glands and lymph. I feel strongly I need to get that area moving, but I have the same concerns. I do many things to keep my lymph moving, but haven't gone in for a full on cleanse.
0 -
3 day cleanse Motherearthliving.com
It is just one of the many sites. I need to get back to some type of better life exercise etc. Im packing on the pounds and have allowed myself to make excuses. Fear factor.
0 -
Hi Ladies,
I just cannot seem to get along with Ibrance, no matter the dose. My WBC and ANC continue to be pathetically low, even after a 10 day break. I worry it's just not the treatment for me. Anyone else have this experience? I guess I'd risk continuing the drug if I knew it was working.
Amy
0 -
Amy, maybe it's not the treatment for you. Not every drug works well for every woman.
I added Ibrance because Faslodex was starting to fail. We were hoping it would act like a booster.The first cycle my WBC went DOWN between day 21 and day 28. Not up. Likely because I had a cold at the time. So, a second week off. Ever since then it's been fine. Most of the side-effects I experienced the first cycle have gone away.
But. Several women have had a horrible time with this drug. Is it just your blood counts? Or are you experiencing other side-effects? Are you totally miserable? There's no reason to stay on a treatment that is making you miserable.
As for whether it's working, is it? How do your scans look? Do tumor markers work for you? If so, how are they? There isn't a lot of clinical experience with the drug -- how does your onc feel about three weeks on and two weeks off?
Some things to think about.
0 -
I start my ibrance/letrozole cocktail tomorrow and I am sooooo anxious about the potential side effects. To date, I have had none since having my Xgeva and Lupron shots...so perhaps, I could be a lucky one. Anyone have any input on this cocktail?
0 -
Fortunately because there are no other side-effects, I'm sticking with it for now. I had a long conversation with MO today regarding other options, which there aren't many except IV chemo -
We don't yet know if Ibrance is working as I haven't had a scan since starting in January. My TM's aren't reliable...so after discussing how others handle Ibrance and my worries about low blood counts, I decided to continue on.
Thanks for your input.
Amy
0 -
@rslawdog, don't anticipate. Research has shown that if people anticipate getting nausea from a treatment they are much more likely to experience it. I would suspect that the same is true of other side-effects.
I found that I had the worst side-effects the first Ibrance cycle. Since then it's been easy peasy. Others have had a really hard time. We are individuals with our own individual experience.
My one tip on Ibrance is to take it immediately after a meal (in my case dinner). It keeps my indigestion away. Or maybe that was a first-cycle side-effect too.
Femara/Lupron are all about estrogen suppression. You will likely experience what they euphemistically call "menopausal symptoms" to some degree. Or maybe not.
@Amy, just keep the hand sanitizer close! I hope it's working for you.
0 -
rslawdog-
I am not 100% sure I am having significant effects from the Ibrance. Living with non-detectable levels of estrogen can explain a lot of what I experience. (At some point I will skip a cycle of Ibrance just to isolate the source of side effects, but not today.)
Hormone suppression and its consequences are something we ER+PR+ stage IV folks probably have to live with. l can't find anyone - traditional, complementary, naturopathic, psychopathic - who doesn't suppress estrogen in ER+PR+ stage IV cancer patients. Alas.
Whatever the source, my experience with this duo has been tolerable. And nothing short of of wonderful in comparison to what I read about traditional chemo.
My oncologist says categorically that she does not see significant side effects from Ibrance in people newly diagnosed at Stage IV. IOW people who haven't had chemo or radiation. She was almost certainly playing with my head (in a helpful way). But really there is no reason for you to expect side effects from Ibrance. Your odds of having an easy time on this drug are high.
On a final note, I am having a pretty easy Cycle IV. I adjusted my supplements significantly, so that could be it. Or I could be adjusting to this pair of drugs. Or maybe we're through with allergy season. In any case, not only has it not been bad, but it is actually getting better.
Let us know how you are doing.
>Z<
0
