Goodbye Mr Faslodex

Kandy

I haven't posted lately, I was waiting to see what exactly was happening. My Pet scan 3 months ago showed 2 very small new spots. One on my pelvis, one on the femur. My radiation oncologist wanted to do SBRT. I went for simulation and in the meantime my medical oncologist decided to do a MRI brain. The brain was normal but a lesion showed in the clivus of the skull. Because of another lesion and the fact that my tumor markers were doubling every month, my radiation oncologist decided to hold off on the therapy. He was afraid I now had a system issue. My tumor markers have went from being in the 20's in March to over 500 this month. Ouch.They did biopsy one of the new spots on my pelvis and it was estrogen positive, progesterone negative, her negative. They decided to do another pet scan, only 3 months since my last one. This one showed multiple lesions. Several in the spine, pelvis, femur, sternum, and most concerning now the liver. WTH? This all happened in 3 months??? Just met with my oncologist today, he is switching treatment to Afinitor/Aromasin. Anyone out there with advice on this combo? I am so worried and upset. This was a huge change in 3 months. Sure could use some reassurance.

exbrnxgrl

Kandy,

No experience with those drugs, but just wanted to let you know that you're in my thoughts.

Caryn

PattyPeppermint

Kandy . I've no experience with that tx. Just wanted to reschedule out to you with support. Sending hugs along the line. I've always loved reading your post. Try to breathe. That's what scares me about my only getting scanned every 3 months. Mo says we can scan early if I have symptoms. But when I was dx stage iv I had too many mets to count from base of skull to tailbone with no signs.

DaughterOfStageIV

Sorry to hear about the progression. That is very upsetting. My mom has been on that combo for quite some time. She has also been on several chemos while on this combo as her doctor still believes she is getting some benefits from A/A. The side effects were somewhat tough at first but they definitely do settle and the combo becomes very manageable. She did have the afinitor dose reduced after several months which helped with side effects. She had the mouth sores which were difficult, several small infections right away (I believe she had several utis and some other things that I can't remember but were easy to treat) and sudden increase in blood sugar which she now takes medicine for next for. She's been on it for a good amount of time and has few side effects at this point. It just took some adjusting at the beginning.Good luck with the new combo- best wishes

intothewoods

Hi Kandy,

When I was scanned in Aug I went from one lone rib met to mets in both lobes of liver, spine another rib and pelvis while on faslodex. I did get a year out of it though. Before faslodex I tried the aromasin/affinitor combo but got a bad rash and since I'm an elementary school principal it wasn't a good look on me. I just had my second cycle of doxil and cytoxan and will do that until it's not working.

I hope you do well on the A/A and sending hugs. I get how scary the liver stuff is!!!

Lisa

Lynnwood1960

Kandy, no experience with these drugs, just lending my support and prayers

sandilee

Hi Kandy,

It's very scary to have a comfortable treatment fail and have to start with something new. I know how you feel, as my tumor markers (CEA) have been doubling in the last few months(now in the 900s) and my scan this month showed many more small tumors in my liver that were not there three months ago. My onc first considered A/A combo for me when it was obvious I was progressing, but he has since decided to put me on Doxil for now, and we hope to be able to go back to a hormonal and targeted treatment like A/A in the future once Doxil (hopefully) beats back some of the numerous tiny tumors that popped up. I just got my port on Monday (first IV chemo in the nearly 10 years with this disease) and will have my first infusion on Friday, going in every three weeks for about an hour and a half.

My onc does feel that A/A is a good treatment for a lot of women with mets like ours and is involved in a trial with that combo along with another new trial drug, similar to Ibrance. He had thought I might be a good candidate for that trial originally, but because my response to Ibrance last year was not good, he decided against it. We settled on the Doxil for now, as my cancer has never been hit with an IV chemo yet, so we will see what happens. I had a pretty good response with Xeloda, so I am hopeful.

The one thing my doc made sure of when he was considering Afinitor was that I have both pneumonia vaccines to protect me during that treatment, and in the future. If you haven't had them, you might ask about them. I am 65, so I think that also came into play. Not sure if they are recommended for younger people.

Good luck, Kandy. I'm right there with you starting something new and kind of scary, with a bunch of tiny new liver mets.

Longtermsurvivor

HI Kandy,

No experience with A/A, but here's the bco topic - ignore the date!

https://community.breastcancer.org/forum/8/topics/...

Part of the problem with using scans to determine the extent of mets is scans don't reveal anything smaller than ???, so you can have micrometers all over the place and if some or many suddenly hit the size that registers on the scans - it could seem like instantaneous growth. But the doubling time might be the same, it just takes a while to show up.

This is what my oncologists told me, so I try not to get too worried over scan results.

Except for oligometasatic disease (where a few lesions can be cured with surgery, chemo, radiation), most treatment for MBC is palliative to treat symptoms, not curative to eliminate the cancer.

My benchmark for treatments is how I feel. Even if scans or TMs disagree, I may stay on a treatment that eases terrible symptoms. But, if the treatment makes me feel terrible, I may stop without confirmation from scans or TMs. And I'm so happy when all three concur!

With MBC how I feel and function is more important to me than how the cancer is being affected by treatment.

Remission or dancing with NED is a common goal in our community - I may be one of a very few who doesn't share it.

Big hug, grandma Kandy! Stephanie

Fitztwins

Those sneaky little buggers!!! I haven't been on afinitor, but did do aromasin. Yeah for no more butt shots, I just got off them myself.

lets hope the A/A combo works well!

Onward and Upward.

Cafelovr

My mom took A/A for about a year. She had some skin rashes and wicked mouth thrush. Make sure to get some magic mouth wash. Plus, I don't know if this was related,, but she would get these major cramps in her hands and thumbs. They would just lock up out of the blue. She hasn't had any cramping since she's been on Madame X (Xeloda). Good luck!!!

ABeautifulSunset

Uck! Kandy, sorry about the rapid progression.that is unsettling to say the least. Have you tried Ibrance already?

Kandy

Thanks for all the replies.

Stephanie, thanks for that link, I had tried to find that and couldn't.

Stefajoy, I haven't been on Ibrance. I immediately asked about that cause I thought he had said before that he would add that next. He said because of the spots in the liver, he felt this was the best way to go. Not really sure why that is.

I'm not really liking the side effects with this combo, I can only hope I will be lucky and not get them. Wishing you all the best.

sueopp

Kandy, I am so sorry to hear your news. Time to remember that we so often do a cha-cha : one step back, but then two steps forward, then forward again. Good luck with your new (and better!) treatment. Standing with you and sending love, SUE

Cure-ious

Hi Kandy,

Sorry about the punch to the guy. Hoping for great luck on A/A combo!!

Does your MO have any thoughts on when its appropriate to get some immunotherapy?!

A study just out in Nature shows immunotherapy is boosted by newly-developed PI3K-gamma inhibitors:

http://www.prnewswire.com/news-releases/infinity-a...

An earlier study showed that, out of 97 already FDA-approved drugs, immunotherapy is most strongly potentiated by combination with HDAC inhibitors:

https://moffitt.org/newsroom/press-release-archive...

There is already at least one phase I study (which is actually is a dual checkpoint immunotherapy combination plus HDAC inhibitor) for MBC using this strategy:

https://clinicaltrials.gov/ct2/show/NCT02453620

Unfortunately I don't think MOs can really keep up with all the trials going on, and if they mention a trial, its usually just whatever is available locally. I understand these are early trials, but do the MOs think we should wait until every other avenue is exhausted before jumping in, or should we try to get these treatments earlier? I see very little in the way of good advice about that question...

Key2

Hi Kandy,

Sorry to hear about you scans...I have imflamatory breast cancer Er+ Pr+ Her - with bone mets.

I am about to start the Afinitor and Aromasin. I have been researching all over the Internet for information on this combo of which most of it is a few years back. I have started on the Aromasin with very little side effects (which is good) but I know Afinitor is the stronger drug and needed to have a class with the nurse in my oncologist office and sign a form stating the side effects..I will be starting Afinitor October 20 2016.

Someone on here gave me a great site to go too https://www.bcmets.org I put in the drug Afinitor under mastectic breast cancer support and have been reading the feeds from current to a few years back regarding others response and the side effects of this drug. It is very informative and gives me a lot of information to take to my doctors visit on October 20.

I have only one kidney was born without the other and want to make sure that what ever drug I take I need to know all the side effects and little tips on how it best for me to deal with any issues that have come up from others that are using or had been using this drug. Package information that comes with the drug is it enough for me on side effects and systems.

I hope this helps......Feel free to reach out if you have any question.

Stay strong and positive!

Kimba

DaughterOfStageIV

Sandilee brought up a great point about getting any vaccines/ immunizations before starting the treatment as you can't get certain ones while on these meds. My mom ended up getting a crazy case of shingles and couldn't get the vaccine as she already started the meds. That was the other infection that I was thinking about. There have been so many things. Speak to your doctor about that before you start. Once you give It time it becomes very doable! I just realized my mom has been taking this combo for the last two years. It's been gentle enough that her doctor has kept her on it while doing different chemos (xeloda, ibrance, doxil, taxotere). Let me know if you have questions. Remember it does get easier

Zillsnot4me

sucky news Kandy but glad you have options.

pwilmarth

Kandy - sorry to hear you are moving on from Mr. Faslodex.. Will keep you in my thoughts and prayers.

zarovka

Kandy - there are numerous trials looking at SBRT in combination with other systemic therapy. SBRT is a kind of systemic therapy because it seems to provoke an immune response against all the tumors, including tumors that were not directly treated by the SBRT. Since you were originally considering SBRT, you might pull the string a bit on why they aren't going ahead. At this point it's not going to get rid of all the tumors, but doing SBRT on one spot can provoke an immune response that takes out the others.

>Z<

AmyJM

Kandy,

So sorry to hear about your scan results. I hope the A/A combo is very effective in knocking things back down. Sending love and prayers.

Hugs,

Amy

DivineMrsM

Kandy, when will you begin your new treatment? Thinking of you and hoping for the best

Kandy

I finally took my first pills today. It was very difficult and stressful to get the insurance company to hurry up and send it. They wanted this then that. Finally the head of the HR department where my husband works, got the ball rolling for me. I am so depressed over this situation. I don't understand how I went from NED to this. I am trying to keep my chin up and hope that this does some good. Thank you all for thinking about me.

PattyPeppermint

kandy. Glad you are keeping your chin up. great attitude. Glad to see you got tx started and hoping se few and benefits extremely wonderful. Hoping it gets you back to Ned

RonnieKay

Hi Kandy & All....I'm sorry to hear about new spots showing up. You've pulled through so much & I'm hoping this new tx knocks these buggers back & you can look forward to feeling strong again...physically & mentally! This crappola totally stinks...especially when you have a baby to play with!!!

teacher911

Hi Kandy, I am so sorry to hear of your progression. I'm glad to hear you've started on your new medicine combo now. I hope that it isn't too difficult and brings you some positive results very soon. I was just recently diagnosed with a progression after being NED for 3 years, so I will be starting a new medicine regimen Femera plus Ibrance. FYI, I did SRBT on a bone lesion in 2013, it was very successful. Sending positive thoughts your way.

artistatheart

Hey Kandy, I just saw this today and just wanted to send more support. I know that news of progression was soooo disheartening for you. Just when you were feeling much better from everything you went through last year.....It does sound like there are a lot of options for you and I hope you get settled into the new Tx with few SE's and it brings you straight back to NED. Sending you hugs.....Ronnie is right, you have a baby to play with!

Hi Ronnie!

Rosevalley

Kandy I wish you great success on AA. I took it for 6 months and it worked really well at blasting the cancer back. Unfortunately i had some concerning heart effects that most folks dont get so I stopped it. You probably will do just fine. Praying you do just fine!

RosesToeses

Kandy, I hope the A/A is going great for you! 

I was on it for a few months last year after Faslodex and Ibrance/Letrozole failed me.  For me it wasn't effective but the Xeloda I've been on since has done well.  I hope A/A does the trick for you, but if not, I want to encourage you--I found it really depressing to fail Faslodex after it had done well and then blow through Ibrance and Afinitor.  It felt like nothing would ever work again but that wasn't true at all and I've had an easy and successful year on my next drug.  

The transitions are so hard with stage iv, but you can do this! 

Kandy

Thanks to y'all of you for your concern and support. I'm 2 weeks into this combo and am feeling okay. It sure was a blow to find that cancer was having a marathon race. Grrr. Trying to keep a good attitude about it. Harper is doing great. He really is a breath of sunshine. Fortunately, I've already got to keep him quiet a bit cause my daughter and son in law are trying to fix up their new house and get ready to move. By this weekend, they will be right down the street in my same neighborhood. Can't wait. Wishing you all the best.

Bestbird

Kandy, I hope your treatment works well for you for a very long time. I know several people who've done well on it. While on A/A, please ensure that your liver enzymes are monitored regularly and carefully, as the combo can be hard on the liver in some cases. In addition, please be alert for shortness of breath or other potential se's to the lung.

Wishing you an excellent and sustained response!

Heidihill

Hope you continue to have smooth sailing on A/A. Glad you'll have Harper so close.