Hi ladies
I’ve mentioned before about my tumour markers going up
This could mean Ibrance/letrazole combo failing
However how is it possible to know which has failed?.. my oncologist spoke of taking me off Ibrance if I show progression but what if it’s the letrazole which needs to be changed..I really don’t want to come off Ibrance
I don’t get the reasoning behind this as I thought Ibrance combined with another AI was the next step
Barb xx
Have you asked about moving to faslodex and ibrance, rather than stopping the ibrance?
No not yet julie as I have to have a scan first before she makes that decision..I know a lot of ladies are on the faslodex/Ibrance combo
She spoke of a drug examestane (??spelling!) which is s tablet
I will ask though
Thanks for that
Barb xx
Hi Barb, this happened to me 2-3 months ago. It is a phenomenon known as “hormone resistance”. I actually worked on the team developing cancer drugs in pharma and so hard to believe a problem we tried to solve has happened to me. With some discussion I was able to get my doc to agree to Ibrance/fasoldex combo. Exemestane also used. Long story short, the new combo only lasted a month because a small amount of lung mets caused me a whole lot of breathing problems. So we moved to Taxol. A decision I was very happy with. I just wanted to aggressively go after the lung nodules. The plan thus far is to finish 12 cycles of taxol and then return to Ibrance/fasoldex. I am hoping and praying this works. So far 3 infusions under my belt and breathing issues have already resolved! So hang in there...so many choices as you know to combine and sequence these days.
I was part of the clinical trial for Exemestane (also known as Aromosin) 13 yrs ago. The joint pain was unbearable. I now have MBC and my oncologist put me back on it months ago reasoning that I had so much less estrogen now that it should be fine. I developed SEVERE pain in my side that put me in the hospital. They said there was no connection to the Exemestane but when I re-started it came right back. Now, all this being said, it was a very odd side effect that my oncologist (and new oncologist) had never seen or heard of. Just a heads up. I am so sorry your combo isn’t working anymore...I agree, don’t quit the Ibrance!
I don’t think they can tell I was switched from letrozole to faslodex and it’s working
With Ibrance?
Yes
That’s interesting..I’ll ask if she’s considering changing my medication..really don’t want to change as I’m coping on these..the devil you know etc!!
Barb xx
I think my oncologist is taking an educated guess about what's working and what's not. So far, she's done right by me, and my last scan was improved. I don't think there is a way to tell which of the meds is working, maybe some research she knows about, and her clinical experience, and applied to my situation. I feel much better on the faslodex. The only thing is the shots. I have a lot of muscle (fat?) back there, I can't imagine if your very thin.
Ha I’m not thin in that area!!... horse riders backside
I’ve heard other ladies that ignoring the discomfort of the shots..side effects aren’t as bad as letrazole
Thanks for your input..you always talk sense
Barb xx
Trust me, I don't always make sense! Yes, I think the discomfort of the shots are worth not feeling arthritic on letrozole.
I didn’t do well on letrazole tho I only took it for a month. Faslodex is a lot more expensive and i’ve been told that a lot of nhs authorities don’t prescribe it, but if you are with bupa that shouldn’t be an issue. They authorised my prescription.
Is it the Letrozole that is causing the pain? Or Ibrance? My pain is so terrible some days
Most of my pain is from my fracture which clearly hasn’t healed very well
Live on pain meds
Barb xx
Thanks Sandra
That’s odd that you’re not covered for faslodex..is it very expensive?.. I’m glad I don’t have to pay for Ibrance..would have to get a loan from somewhere..I bet banks won’t lend money to us!!
Barb xx
It about 9K a month for me to have those shots. It's shocking. Between that and the Ibrance we are looking at 20K for which I pay nothing. That is one of the major reasons I still work. Golden handcuffs. I can't imagine not being able to afford to take these meds. It's criminal that people can't get life saving drugs.
I agree...it’s despicable and so sad...at least we have s chance!
Barb xx
I hope your current treatment is successful for a very long time. I think we pay much more for drugs than you. In fact there is a movement to let us buy our prescription drugs from Canada. It’s a hot mess. People who need meds should get them, end of story
Absolutely!
Didn’t someone post an article about taking a 7 week break from Ibrance can start it working again? Xx
I'll have to remember that.
That was me. I reposted the link to Barbteeth.
Hi Barb
I think the scan will determine the meds. My markers kept rising also but then have been at 109 for two months now. I am on Ibrance’ and faslodex. I would ask for that combo if possible.
Many docs do not rely on markers.
Hope the scan results are good.
Love
Frances
Hi Barb,
I remember hearing they change the Al as well. I hope all goes well with your scan.🙏🏻
xo
Hello
The standard of care and recommendation are to switch from letrazole to Faslodex injection and stay on Ibrance. It does not make any sense to switch to examestane. If your Onc wants to do this I would get a second opinion. Also I know the Faslodex us n injection but there are current studies looking at it on pill form that are looking positive. Best of luck.
Hi, Barb! My understanding is that when your Ibrance/Letrozole combo fails the next step is Ibrance and Faslodex. Here in the States, however, insurance won't cover the cost of Ibrance beyond use as a first line of drugs, so we can only get the Faslodex w/o Ibrance, unless we're in a trial.
That may depend on the insurance. I just started Ibrance/Faslodex as second line after 14 months on just Letrozole. I think this is a newer authorized usage - worth asking about anyway.
The letrozole will stay and Ibrance will change because it cleans up what the other does and is the targeted therapy-Let’s see what your 0nc does-they will find another that works if scan showing progression.
Hi Barb. When I was switched from Letrozole to Faslodex and Ibrance was left in place I asked my onc how she knew it was the letrozole that stopped working. She explained it that Ibrance supports the med you are on. It is used in addition to a med, not as a stand alone med by most. Does this make sense?
That is my understanding, too! Ibrance is still a fairly new drug and I haven't followed the data on it since it's been used along with the older hormonal drugs. I was diagnosed years before Ibrance and other targeted drugs were on the scene and I got nearly 5 years from Letrozole and over 9 years from Faslodex. When I began the Faslodex, one injection rather than the current two (twice the dose) was standard of care. I did well on that and when the dose increase was approved, I had my only period of NED. That didn't last long but my onc has never changed meds based only on TMs but relies on scans. I was on Ibrance with the Faslodex for almost ten cycles in 2016 but it damaged my lungs and that seems to be permanent. I developed something called Interstitial lung disease (ILD) which my pulmonologist described as being like gunk between the air sacs. Apparently I am fortunate to have it only at the bottom of one lobe, but it still leaves me easily breathless and unable to tolerate humid summer weather. I have had mbc for 15 years and other than the Ibrance and bone meds, have only been on 3 lines of hormonal meds, Letrozole, Faslodex, and Exemestane. The first and third are AIs, Letrozole is non-steroidal and Exemestane is steroidal. The other AI is Anastrazole/Arimidex and it is older but very very similar to Letrozole. My impression is that most oncs favor either Letrozole or Anastrazole. I have heard of women having difficult side effects on one of those and having fairly decent luck switching to the other to see if the side effects are more tolerable.
This is so interesting, PJBinMI! I've always been told that Letrozole is an AI and I know that the Susan G. Komen Foundatiion classifies it as such.
I don't understand your comment. I certainly did not mean to suggest that Letroole is not an AI. It is a non-steroidal AI, as is it's close "cousin" drug, Anastrazole. Did I misunderstand your note?
Great information that you shared here. Thank you!
Prior to Ibrance being on the scene many people did well (some are still living for years only on an AI).
I don't understand it all but I do know the standard of care is to take the patient off the 'new' drug: Ibrance, stay on an AI and try another drug.
As always, wish you the best, ask your doc all of your questions. Check info about verzenzio and Zelda as those might be the next drugs to consider.
I've read that our cancer cells keep changing and eventually develop resistance to treatment then the next drug is almost like the last one but slightly different so the cancer isn't resistant to it and it hopefully works (my intrepretation).
Let us know how you are doing.
Barb,
I do think that faslodex is next as the Ibrance/ Faslodex combo is the next step!
Hopefully that is what your onc will do.
I know how hard it is when we try to figure out this rollercoaster. But as long as you have faith in your onc you will be ok! And as long as you have input it will work out as you both discuss what's next.
Love,
Marianne
Barb, I had some progression and was switched to the 125 mg. I then received a shipment that was sent way outside the recommended shipping ranges. They now always ship it at the correct temperature. I sincerely believe that caused my progression. They have dropped significantly since then. I have had two scan since that shipment. I have wondered what I will do when I can no longer take Ibrance. I like to do investigate options.
My inclination is to switch to Falsadex. After the article came out about stopping seven weeks and then restarting, I found that interesting. I would love a seven week break. I am not sure if I would do it, since it hasn't been tried on humans. Hopefully, your scans will be good and this will be a non-issue. Blessings, Hannah
I've been on Ibrance and Letrozole for 14 months and my tumor marker shot up and kept climbing then it gradually has gone back down all over a period of 3-4 months. When it first shot up 20 points in Dec. 2018 my scans at the end of Jan. 2019 showed improvement.
The tumor marker went back down 18 points in Jan.2019. And kept climbing another 18 points Feb. 1,2019, on Feb. 15th it went up 6 more points then it went down 1 point at the end of Feb. 2019 and by the end of March it went down 11 points. I have scans this weekend and another tumor marker test on the 24th.
The letrozole is causing a lot of inflammation in my hands and the joints are getting to the point of reviewing options to replace the Letrozle "if" my hands continue to take on too much disfunction.
My ONC gave me an informative 4 page on Fulvestrant / Faslodex to read before I make any decisions on the progression of joint pain in my hands.
I don't want a shot in the bum, now way. However, it appears the 3 page side effects are the best option.
I''m holding out and solidering thru the hand discomfort.
The other option replacing the Letrozole , I forgot the drug's name but one of the side effects was blood clots. So I immediately out ruled that as an option because my PTSD can cause me to have a rapid increase in my blood pressure if I'm triggered. That's too much of a risk for me.
My point with sharing all of my tumor marker history with you Barb, is... Why would you consider changing your meds. based "only" on a tumor marker increase? Your scans should be the determining factor, I would think.
Hope it's a false read on the TM like mine was and your scans show no progression.
Sue
Hi Sue
Since I posted...I’ve discovered I have a UTI infection ...so on antibiotics..I’m wondering if it’s been brewing up for a few weeks and may explain the increase in the markers..I’m hoping this is the case!
As you say I’ll find out what’s happening when I get my next scan results ...ugh
Barb xx
I have found the arthritis med Celebrex to really help alot with bone/joint pain from hormonal meds. I was on it long before cancer and have had to go off a few times before medical procedures and when I do, after just two or three days my joints hurt, and then when I've gone back on it, after a couple of days, they feel better. Personally, I would try everything I could to help with the bone/joint pain before I'd change treatment, but that is me. The last several bc conferences I've attended have included several oncs saying that inflammation helps cancer progress and that fighting inflammation can help with treatment. Your bone pain may be from inflammation. My primary care doctor recommended several things to reduce inflammation. She was on them herself and got the list from a pain doctor. They are : turmeric (aka curcumin, like the spice cumin), 1 cup a day of tart cherry juice, fish oil and glucosamin/chondrotin (sp?). I tried the first two right away and some swelling in my formerly broken ankle went away within 36 hours! My onc oked all those things though she didn't know if they would help. I've also had some good results from using hemp cream on sore spots. CBD or medical marijuana might help too if you can get those.
Thanks for the inflammation information.
My ONC did 2 test to check on inflammation and the results just came in.
One was the SED Rate which was 84 mm/hour, normal range is 0.0-20.0.
The second was C-reactive protein (CRP), cardiac, mg/L, which was 12.24 mg/L, normal range- 0.0 - 3.0.
I'm definitely going to solider thru the pain before I even consider changing the Letrozole.
I take a whole lot to turmeric, I'll try the tart cherry juice, glucosamine/chondroitin.
I stopped fish oil, but have continued eating salmon on a weekly bases.
Obesity and lack of exercise are also related to inflammation.
I've been living with inflammation long before my MBC dx, related to a re-occurring knee injury that started in 1973.
And good lord obesity and lack of exercise were not related to my inflammation until I re-injured my knee in 2015.
When I see my ONC next month I'll ask her about the Celebrex.
Thank you again for the information.
Sue
I am allergic to Celebrex but I have been taking Vimovo since my diagnosis and it helps a lot with bone pain and inflammation
Toomanyquestions is correct. I posted an article about Ibrance resistance. You and your onc. might find this interesting:
Interesting. Thanks for letting us know.
Following 😺
Hi I was on Faslodex and Ibrance. My numbers went up and my oncologist changed me to Letrozole as he said the Faslodex stopped working.
My stomach and rectal cancers are in remission but I have a new spot.
I have changed to a vegetarian diet and added carrot juice.
I asked my oncologist about curcurmin. He said it is estrogen based and my cancer likes estrogen.
Sending warm Easter and Passover wishes to all Reenie
Thank you for that
I’m intrigued about curcumin not advised for you
My oncologist has said it’s ok for me and there have been studies which suggest it’s if benefit...honestly I sometimes don’t know what to think
Happy Easter and all the best
Barb xx
Barb, I'd been taking curcumin too but stopped with Ibrance. Here's the page on it (tumeric) from the Memorial Sloan Kettering site.
mskcc.org/cancer-care/integ...
Look under the section for Health Professionals and go to "herb drug interactions". There are lots interactions with different CYP enzymes and some chemos - maybe your oncologist can interpret it. I stopped because its anticoagulant properties can increase risk of bleeding and Ibrance dropped my platelet count so low I was getting nose bleeds. I find this site helpful. Take care!
Hi Barb
I'm just back from my 2nd onc. appt. and he agreed to let me wait and see what the letrozole was doing before adding any other medicine to it; so I will be having ct's and bone scan within the next few weeks to compare to the ones I had last November, I've been on letrozole for 3 months; how long have others said it takes for letrozole to start working I'm wondering? I had told him about reading that ibrance was just as effective at 75 mg. as 125 mg. and he said if I take it and have side effects he will lower to 100 but NOT to 75 mg. So he basically told me some believe 75 mg. as effective and others won't go below 100 mg. I know we were all talking about this recently and wanted to share with you what this onc in galveston, tx at University of Texas Medical Branch said. God bless you and heal us all in Jesus name, amen! Oh, I did bloodwork, 1st time in my life to have a cancer antigen test. How do the blood markers work exactly, if you don't mind sharing, thanks! <3 xo
My oncologist won’t reduce my dose to 75mg
There are two markers taken...they measure proteins produced by active cancer cells...that’s all I know really
Barb xx
oh he also said out of all the women they are treating with ibrance, he's had none have to go into the hospital with major problems. that was comforting as well to hear. He seemed to tolerate ME well <grin w/tongue in cheek>.
Well that’s reassuring re Ibrance...it just shows that the scary leaflet listing the side effects is to tell us the worst case scenario ....when most people don’t have all the side effects and those that do..they can be mild and tolerable
I just hope I can stay on this combo for longer
All the best to you
Barb xx
mine was the cancer antigen 27-29 and it was 109; supposed to be under 40. I don't know what it was 3 mos. ago because this is the 1st one done for markers. Doctor said not to be concerned .... just relating info!
Oh they don’t do that one in UK but thanks for letting me know that your oncologist doesn’t seem too perturbed by it being raised
I got your message by the way!!!
Barb xx
good, thank you! <3
I am on both of those too going on for a year. I read that in the USA they stop it for 20 days and start ibrance again with success. I will try to locate the article
My oncologist mentioned that would be our next move if and when the present combo doesn’t work. He didn’t tell me it wasn’t covered. In Canada it also depends on the province you live in 😩
That’s what he told me the next move would be.
Ibrance and kidney functioning
Ibrance vs Piquray
Verzenio and letrazole
