Hello all,I'm feeling down now, another bump in the road sadly. CT scan this week showing 3 new liver spots (previously only bone mets, but many). Looking for some inspiration and knowledge from you fellow thrivers.
I have been on Ibrance & Letrozole for 18 mths. The Ibrance was lowered from 125 to 100 then 75. With still low red blood cells & low neutrafils, the dosage was changed to 3 wks on, 2 wks off from 1 (last 2 mths), which I was worried might cause progression, and here we are.
I wanted to see what most were prescribed for 2nd line of treatment. I spoke only to the Radiation Oncologist today who mentioned Chemo but he said I will have the conversation & treatment recommended by my Medical oncologist who I will be seeing Friday. But I just wanted to have some knowledge going in. My Medical oncologist said at the beginning of MBC dx that there are several lines of treatment, he didn't mention which, but I’m just wondering if there wouldn't be other meds before going straight to chemo ( although at the beginning, he said if there were organs affected, that chemo would be the treatment). Thanks so much in advance for your input all. ❤️
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Thanks Silver126, so Xeloda( oral chemo?) was your 2nd line of treatment, just curious if you are in the US? I'm always interested to see the difference in treatments. Also, how long were you on the 1st line? Thx so much, be well! 💞
Hello Smokeyd, I’m from Italy and I was on Ribociclib/Letrozole for 15 months. I started with one bone met only, was NED for about 10 months, but then I developed a liver met. That’s why they changed treatment.
How did/are you going on the Xeloda? I've got liver mets that have progressed since they popped up last Nov, just started taking Afinitor but Xeloda is likely to be next
I was on Xeloda for 7 months and it was a very good treatment for me. I had no side effects, but it didn’t last long. I was then switched to Afinitor+ Exemestane due to liver progression, but this combo didn’t work at all.
Aha interesting! Well the good news is you not having any side efects while on the xeloda! Did it shrink your liver mets before they progressed? And what are you being treated with now?
After four months they shrank a lot, the second scan showed progression. It was a year ago. I was then on Afinitor+ Exemestane but they didn’t work, Caelyx (it stopped working after 5 months). Now I’m treated with Abraxane. I started in March. At the end of May PET scans showed very good improvement, the next scan is scheduled at the end of August. We’ll see…
I had IV Chemotherapy when my bone mets rampaged into my skull and seized ground as well as radiation to selected areas for the second line. Third line has seen off the original breast tumour plus a lot of the bone mets but would that have been the case without the Abraxane? No one knows the answer but I don't have regrets about going with the treatment because it brought me here, 8 years and counting.
My, you have endured alot, but so happy to hear the treatments have brought you many yrs! Just curious what was your 1st line & on for how long? And what was the 3rd line after IV Chemo Abraxane (just read a lot of good things about it). Blessings 🙌 to you for many more wonderful years! 💞
First line was Letrazole. I think I was on it for maybe three months. I’d have to check to be sure but definitely not more than six months. As it didn’t work I had the Abraxane. Third line was Afinitor and Exemestane but I had to drop Afinitor after ten months. I’ve been in Exemestane alone since April 2017. Although a new node lit up in the March scan it reduced by half in May scan so I’ve stayed on Exemestane. The first twelve months were hard but since then life has been relatively normal. Would it have been without the Abraxane? No one knows but I don’t regret taking it.
Yes sounds like 1st 12 mths would have been rough as majority was IV chemo, but sounds like it really aggressively fought the cancer so understandably no regrets for sure! And considering you are now only on Exemestane, that's great. Interesting why it lit up in Mar. but ok in May but was on same meds. Thanks again for all your input! Stay well❤️🙌
So you really got a great long run on the Abraxane ! How was that to tolerate? I might have taken it at some point years go with initila doagnosis but I really cant remember now. I found those chemos tough
As far as I recall now I had some nausea but not a lot and I eventually got the tingling and numbness in my hands and feet. My hands cleared completely but it took two years and the numbness in my feet has retreated to around my toes but it doesn’t cause too many issues. I don’t wear high heeled pumps any more but I can wear sandals with straps. I’m more interested in comfort and safe walking these days! The IV chemotherapy we get at stage four is much milder than those at earlier stages get. I think the Red Devil has been repackaged in pill form although I can’t remember its name. It might be Xeloda but don’t quote me on that.
I think the taxane based chemotherapy isn’t so bad but anyone who’s had the full gamut of IV chemotherapy, each worse than the last, at stages prior to this don’t fancy the idea of chemotherapy at stage four and that fear spreads amongst those who haven’t ever had IV chemotherapy. The downside is the time it takes. Herceptin used to be an infusion drug and it took three hours to get into the patient. Now it’s a pill and it’s nothing. I’m not HER+ so I haven’t had that experience thankfully. Abraxane was a twenty minute infusion but with all the other things they did it took an hour.
I’d agree with your experience of IV chemotherapy. It’s in the past and I’d actually forgotten about the mild neuropathy I ended up with but I don’t think about it and it’s just one more side effect along the way. I actually found Afinitor was much harder on my body than Abraxane was.
Thanks for taking the time to respond All very valid points that you make. I'm a very active person who also teaches fitness so the issue with nerve damage and the taxanes was something I have worked hard to avoid . Yes those old chemos were awful! Red devil is Adriamycin, then I had Cytoxan and Taxotere (but cut it short to avoid the nerve damage). It's great red devil is now in pill form, that takes half the stress away for patients! I also did not know Herceptin is now available as a pill form too. Things really have changed so much in the last 18 years since I started this journey!!
Thanks, I will definitely ask about those! How long were you on Xeloda/Capecitabine, guessing they were 2nd line treatment. Just curious where you are from too. Blessings, Stay well!🙌💞
I am in Arizona. I was on Xeloda for a year and it worked very well for me for that entire time. It was third line - I was Ibrance/Letrozole for a year then Faslodex for 2 months, then Xeloda.
Oh no worries, I hear ya, I'm not always on either! Interesting to see the differences in therapy routes. I did ask about Xeloda, but MO said that would be later ( can't remember why offhand?). He said the next line/' standard of care' would be IV chemo Taxol. I just thought there would be something before bringing out the 'big guns', chemo lol! Thanks so much for your input. Take care, stay well! 🙌💞
I had Lynparaza after iBrance but that's only for a specific mutation type. Right now I've recently started Afinitor/Everolimus but yesterday I found out that I won't be able to get one of my other future options, until I have done a line of chemo first 😭
And what are you on now after the Xeloda? I will probably take it next. I just had a meeting with my doc and we discussed a couple of other ongoing options, but she said after the xeloda - which I really don't want to face
I was offered Xeloda, Paclitaxol or a new trial of Trodelvy with or without Keytruda. Could not resist trying one of the new Anti-body Drug Conjugates with Immunotherapy. Oncologist confirmed the Xeloda and Paclitaxol will still be available in the future if needed. Good luck. There are other endocrine treatments out there including Oral SERDs if applicable. Your doctor will know. You will pick the one that works best with your lifestyle and comfort level.
Thanks for your reply. Yes, read some about ADC's and sounds very promising! And good to know the Xeloda & Paclitaxol will still be available if needed. Curious if you are located in the US. It seems like more ppl are offered trials, although it may just be due to sheer difference in numbers/ population, or maybe just not hearing about more ppl in Canada on trials?! ...the things that make you go 'hmmmm' lol! Thanks again! Stay well ❤️🙌
I was going to say that your doctor's comment that chemo next is the standard of care - might not necessarily be the case everywhere else (vs. his or local to you). Seems you're in Canada, not sure of your hospital options around you but if you're curious, why not try a search for trials in your area. Sometimes we have to chase these options ourselves. Also don't be afraid to ask your doctor why he thinks you don't have other options before chemo, eg. other SERD's - why not appropriate for you right now?. Also enquire what he will plan for you for after the chemo line
Thanks, yes I think the difference is definitely due to being in Canada and that is the next standard of care per the guidelines (I asked). He said he technically doesn't decide per say, its per algorithms/ approved treatments by government ( awesom4ever explains it well below). I am definitely going to look into trials available. I asked also about after Taxol, he said another chemo. I asked about Xeloda, and he said that would be later. I'm gonna hope for the best on Taxol, fingers double crossed 🤞🙏💞
it hadn’t occurred to me that they may do that for treatment options! Interesting. Seems there should be wriggle room for exceptions but I guess it also comes down to cost analysis/gains when they’re paying for it I wonder if they do that here in the States too?
Yes, a sad reality check for me too after reading so many different options here, but as awesome4life said (&MO), comes down to algorithm & proven treatments , and as you said, cost analysis/gains. Awesome4life said too, different in US if you have a good drug plan. Will try to trust that next treatment will knock back the progression 🙏💞
Yes I am located in the US and live near one of the top cancer centers affiliated with a leading medical school. There are many oncologists , scientists and data scientists specializing in breast cancer research at both the cancer center, pharmaceutical companies and biotech firms throughout the area. Fortunately there are always a number of trials underway nearby.
However no matter where in the world you live, the standard of care is the same or similar. The oncologists all share clinical best practices and set the international standards. We all benefit from the research taking place throughout the world.
Sounds like you are in a good spot! We do have to have faith that we all receive the best care possible. We definitely benefit from the research, treatments for BC have come a long way in just the last 10 yrs even!
Hi I totally understand you're feeling down, who wouldn't in your situation? Be kind to yourself.
It's not the end of the line but the start of a new beginning.... on a drug that can hold back your disease. Many Chemo agents are not as harsh on the body as once was the case. A few weeks ago I was in a similar position , progression brain and lungs. I had Gamma radiotherapy for the brain mets a month ago and this week started on Enhurtu. Amazingly despite all my concerns, I've hardly noticed any side effects. Some fatigue perhaps. Having a positive attitude helps.
Our worries tend to focus on the worst case scenario... what we experience is often quite different.
Get all the emotional support you can from family and friends (anti depressants?) to help you through this period of change.
May you soon be climbing the curve and staying there for some time to come.
Thanks so much for all your input and all your kind words. You are so right, sometimes the fears are much worse than what we end up experiencing. So sorry to hear of your progression as well, sounds like you have a good path forward. Blessings to you, stay well 🙌❤️
My treatment experience the last 2 years after 2x mastectomy turning to MSB. My first line was Ibrance - which did the job for 4 mos.. I then I went to Taxol infusions - it was either that or Piqray which I am avoiding. After a couple rounds w/ Taxol chemo (3wks on / 1 off), it didn't work, although markers lowered. I am now on my second round of Xeloda and will likely have a scan after 3 rounds? I see Piqray in my future because I have the PIKC3A mutation. I too have bone cancer and small spots on my liver. As a man, the treatments for me were all researched on woman so I may not be the right person to respond here.
I think it's a great feat you did well for 18 mos. on Ibrance, and there are so many other drugs targeting, your, our, cancer. Keep up the good attitude and endurance - your treatment will find you and be successful.
My onc also diagnosed Taxol for next treatment. I was not expecting him to say it would be indefinitely or until it is no longer working. But as you said, we are lucky there are many other drug options. Thanks for your input & well wishes! Here's hoping that your next treatment plan brings you much success 🙌 ❤️
Good morning Smokeyd, your journey sounds very similar to my own. I was diagnosed back in 2019, with my 1st line of treatment being Ibrance, Letrozole and Lupron injection (to suppress my ovaries). My cancer is ER/PR+ HER2-. At that point, I had a Foundations Test run on me to check for mutations and I had zero. During the course of being on this treatment, and I want to add that Letrozole had caused bad side effects for me, so I was switched to Exemestane. Anyhow, I was clear in 2020, then it started to return in 2021 to my bones and my left breast (ironically where it started). My doctor ordered another test to check for mutations and I developed an ESR1 and Mtor mutation, which is common for those who are on endocrine therapy. Fast forward, in February 2023, when I had my PET Scan, there were 3 lesions that showed up on my liver. I am no longer on any hormonal blockers, thank god! However, I am now taking Xeloda, which is known to decrease lesions in the liver, etc., and have not had any bad side effects from it. I've never been on a chemo pill before, and this one is very very tolerable. I am doing better on this then when I was on Ibrance. I hope my sharing this information with you will help guide you in your decision.
Yes, very similar jouney. I too had side effects, bad joint pain with Letrozole and take 1 oxycodone a day to manage pain. From what I understand, it seems you weren't changed meds from Ibrance/Exemestane after initial progression in bone/breast (mine too was left!) and developing the ESR1 and Mtor mutations? Meds changed to Xeloda after progression to liver, thankfully you are tolerting well! I saw my medical onc today and he said the next line/ standard care treatment for me is Paclitaxel/Taxol IV chemo. I did ask about Xeloda, can't remember offhand why not that. Thanks again for sharing and wishing you continued success on Xeloda, blessings 🙌 ❤️
I too was on Ibrance for 18 mo when cancer spread to my liver. I was put on Aromasin and Affinitor. I had a terrible allergic reaction and was really sick for 3 mo. My onc and I discussed the fact that all these medications only work for a period of time. So therefore I didn’t want the strongest first. Right now I’m on Kisqali and anastroze and it seems to be working. Little side effects. I think the next will be Xeloda.
Oh dear, that must have been scary with that allergic reaction. Glad to hear the next line has been much better for you. I saw my medical onc yesterday and he said the next line/ standard care treatment for me is Paclitaxel/Taxol IV chemo. Fingers crossed 🤞 🤞 all goes well. Stay well, blessings 🙌 ❤️
I was also on Ibrance/Letrozole for 18 months before progression to liver (originally bone only). I was on 100 for 3 weeks on/1 week off and I still had progression. It was a very scary place to be especially since Ibrance was relatively easy for me. The first thing my MO ordered was a genomic test to see what mutations have developed during my first line and what are the available standard of care treatments as well as clinical trials.
The results showed a PIK3CA mutation so Alpelisib (Piqray) would have been the 2nd line. However, there was a clinical trial for a more targeted drug for PIK3CA and after discussing with my MO, I decided to do the trial (RLY-2608). Btw, I'm in the US and go to a major cancer center. I was told that since it was a targeted treatment, there was less toxicity than Piqray (higher glucose, GI issues, rash) and this turned out to be true. I've been on this trial for the last 7 months with my liver lesions decreasing in size and with stable bones.
Hopefully a genomic test will be part of your next step before making a final decision. Wishing you all the best.
hi, I’m just curious what clinical trial were you on?
And for the genomic tests, did they require tumor tissue or can they be done with blood test? (I have just bone Mets and my oncologist said that it’s hard to get tissue from bone Mets for genetic tests. I did have a blood biopsy for PIC3CA and am on Piqray even though I didn’t have the exact mutation that it targets.)
Interesting, my Onc did not talk about mutation testing or ever mention trials. Here's where I think in Canada, we do not seem to be offered the same options. He did not mention Liver biopsy, which I see some ppl have asked Onc for. I asked, & he said it would not change path forward. Yesterday he said the next line/ standard care treatment for me is Paclitaxel/Taxol IV chemo. Fingers double crossed all goes well🤞🤞Wishing you all the best on your trial, blessings to you🙌❤️
Hi HelenI am on the Rly-2608 trial from Relay Therapeutics, phase 1b (dosing stage). I started the trial instead of going to Piqray since it affects the same mutation, Pik3Ca. It was a blood test. I was bone only at initial dx and they did a biopsy of my sacrum which did not yield good results (bone biopsy too challenging and yields indefinite answers) .
My MO really recommended this trial due to very positive results and almost non existent side effects (this is my experience so far). There was a presention in June from ASCOabout this drug and it lt was very positive. All the best with Piqray, Helen.
Hi Smokyed. I forgot to.mention that my genetic mutation test was done via blood test (not liver biopsy, lesions too small). Best of luck with Paclitaxel Taxol. This treatment seem very effective on liver lesions. Hope it knocks yours back! Wishing you peace of mind and heart during this process.
Thanks, good to know mutations can be found through blood tests. My MO also said too small to get accurate biopsy. I'm hoping Taxol will work and trying to trust the process that it's the way to go. Thanks for your kind words & well wishes! Stay well, blessings 🙌 ❤️
Thanks for that info! (I wonder if this would work when Piqray stops. But guessing that I wouldn’t qualify for trial after taking Piqray. But then again, maybe there’ll be a trial for whether rly2608 works after Piqray!🤣. )
Anyway, it’s great that they come out with better versions of these drugs. Best to you!
I just did some research on rly2608 and sure enough, they’ll be testing it on people who have previously taken another Pic3ca inhibitor, so I’ll tell my onc about it:
After the MTD/RP2D for the combination is determined, the dose-expansion part will further evaluate the regimen in 2 groups of patients with PIK3CA-mutant, HR-positive/HER2-negative advanced breast cancer: those who have not received a prior PI3Kα inhibitor and those who are intolerant to a PI3Kα inhibitor
I was on Ibrance and Letrozole for 18 months when they stopped working. I am now on Versenio and Fulvestrant, but had to have my dosage lowered after six weeks. So far so good on the reduced dosage, but I have my next set of scans on 7/20 so will let you know. I too was told that there were several options left to try when this combination stops working. Hang in there! Cheryl
Hope your new treatment works well for you! Just curious if you are in the US? I'm wondering because your new 2nd line treatment is another targeted drug & a hormone therapy. My MO has told me the next line/ standard care treatment for me is Paclitaxel/Taxol IV chemo. It just feels like it may be jumping to the 'big guns' so early ? & didn't think to ask if other targeted drug & a hormone therapy could be next line. I only asked about Xeloda oral chemo but he said that would be option later. I was not expecting him to say the Taxol would be indefinitely or until it is no longer working, and then a different chemo if progression. Guess all I can think is goodbye to my hair from here on out?!😪 He said that hair loss was not as common side effect but not what I'm seeing when I google! Thanks again for your input. Stay well, blessings 🙌 ❤️
Hair loss not a common side effect of taxol….. really!! I’m having my first treatment today - I have been faffing around deciding whether to cold cap or not! I’m thinking to give it a go but I don’t want to add an extra stress of a freezing head and extra time in chemo chair. My First time with IV chemo, when are you due to start treatment? I really am fascinated that your Dr thinks no hair loss, all the best x
Oh good luck with your treatment today! Hope the cold cap works for you, not sure I could stand it lol! I went by a cancer support centre yesterday and got a free wig, it's really cute, so I guess I'm ready! Yes, not sure why MO said hair loss not common side effect, maybe due to dosage? Or meant is common?But I guess, whatever will be, will be, I'm going to try and take it as it comes and not stress about it, if it means I get to stick around a little longer, that's the goal🙏. Take care and all the best in this next step. Blessings 🙌 ❤️
If you expect to lose your hair make sure sure to get yourself a couple of cool scarves too I never wore a wig but my friends who did always complained about how hot it was in the hot weather.
The main concern to watch for with Taxol, which happens over time, is tingling and/or numbness in hands and/or feet.( I’m just letting you be aware in case your doctor is a downplayer of side effects). Aside from being annoying, numbness in feet can effect balance significantly . Not everyone gets it, but a good % do
Yes, already got a few scarves & wig (for free!)from the cancer support centre. Thanks re. info about numbness ( yes, lol re. MO downplay, that's what I thought trying to soften the blow but not way to go if that was the case!?)
I know they’re only trying to assuage our fears but I personally like knowing the facts! so 1. I can be prepared vs unpleasantly surprised . 2. Control my options myself based on said facts so I can choose what is appropriate for myself instead of the doctors deciding my life for me. So as one example, for me, moving well is so important to me. And I’ve always swerved for options (including choice of post-mastectomy options) that allow me to continue what I love! I’m a big advocate for quality of life.
Hi Smokeyd. I'm sorry for your progression. I know it's the scan results we all fear but ultimately will face as we continue on this journey. I was diagnosed in 2018 with De Novo MBC to bones only. I got 5 years on Ibrance and Letrozole but sadly had the dreaded 'progression' on my scan in February of this year and had to change treatment. I am Canadian and very realistic as to what treatments we will be offered. My biggest piece of advice is to not get caught up in all the potential options that is available to members who live in the USA and other countries . Basically in the US as long as a patient has an insurance coverage the oncologists can basically order whatever they want and as long as the insurance agrees they will pay. In Canada it is completely different and because it is government funded there are many restrictions. Each province develops a standard of care algorithm that the oncologist has to follow. Typically that means if you are ER+ PR+ Her2- you get one chance at designer drugs ( Ibrance or Verzenio) typically and when that fails the next subsequent treatments come from the algorithm. With you now showing liver mets I would agree with your oncologist to hit it hard with a proven chemotherapy agent to hopefully stop the spread in it's tracks. I know it sucks when you read about all the other options others try before hitting the chemo pathway...but it's pointless to stress yourself out about what you can't change. I've managed to dodge the chemotherapy route because my progression was still in my bones. However I do know that as soon as the major organs show mets... chemotherapy is in my future. I have also seen you mention clinical trials and availability...there are some that are available to us in Canada and you can check that out yourself. I follow all of this closely and am blessed to have a fabulous oncologist that I trust. I'm mostly a lurker on the site but if you want to DM me with any questions I would be happy to help you. I understand that you will be starting Taxol soon. It's a tried and true chemotherapy that's been around for many years. I have faith that it will zap those small liver mets and after that it is quite likely that you may be able to go back to an oral chemotherapy treatment...Xeloda (Capecitabine). It's been around for a long time too so definitely available in all provinces in Canada as part of the standard of care options. I hope you find this board helpful but again just remember that generally speaking the new drugs that hit the market and are approved by FDA will not be available to us here unless they truly show as game changers. Welcome but I am truly sorry that you have this disease and need to be a part of this community. Take care.
Thank you so much for your reply. I'm sorry to not get back to you earlier as I'm getting ready for a vacation, thankfully in hindsight I get to travel before next treatment! I'm sorry for you having to be on this journey too and all here as well. As a friend put it, the road can get pretty windy at times, several bumps, and some long and beautiful straight aways as well. Thinking about him too now and sad as he is currently in ICU 😪🙏. I guess in my heart of hearts I knew this to be the next std of care treatment plan for Canadians (& this was my concern/fear, because our health care is federally funded, our options are quite different). MO did say this was the next standard of care (as you said, per algorithm), he basically does not decide as it is per guidelines. Again, in the end, I believe this will probably be the best path forward, like you said, hit it hard with chemo to stop the spread in it's tracks!🙏 Thanks for your offer, I will likely DM you when I get back to talk about trials available here. Just curious what your 2nd line treatment was for bone mets only. Glad to hear you had such a nice long run on Ibrance & Letrozole!
Thank you so much for your positivity and support, it is truly appreciated!
Have a wonderful vacation! Nice to be able for you to get away prior to starting your first chemo treatment. Yes the guidelines are pre-determined for us Canada gals but we still have options so we have to be grateful for that. My second line treatment that was offered was Exemestane which is a hormone blocker. As well I was able to secure a 6 month supply of Everolomus years ago from a lady who had already been given the drugs for travel and after she got the supply her scans showed it wasn't working and she had to change treatment. Anyway even though my oncologist is not allowed to write me the prescription for the Everolomus she was very willing to support and monitor me while I take it. It's not been an easy drug to tolerate for me...certainly not like Ibrance which was a wonderful treatment for me and I had no real side effects and stayed on the 125mg dose for the 5 years. I have scans again in a month(I get them every 3 months) so we will see if it is working. I can certainly help you with how to find trials that are open and available to us or answer any other questions you might have. Have a safe trip...I hope you are going somewhere wonderful. Take care.
Wow, how lucky you are to have received the Everolimus for 6 mths for free, and that your MO was supportive, that's great! Sending positive vibes for good scans🙌🙏Yes, I'm so happy to be going away before I might not be able to ?! (2 wks chemo, 1 wk off, do they allow a 1 wk vacation in there?!) I'm going to PEI, can't wait! Will be staying with my sister and we are having a small family reunion, should be fun! Take care 🙌❤️
Yes I am lucky for sure. However the caveat is that even if it is working when my supply runs out that's it and I always will have the 'what- if' in my mind. Regardless that's the way it is. Enjoy your vacation....PEI should be beautiful. I'm originally from the east coast but haven't lived there since 1985. I hope your family reunion will be memorable. Take care and safe travels. Leave MBC @home and just enjoy.
I only had Everolimus for around ten months but I stayed on Exemestane and am on it still. The trial data showed that Afinitor and Aromasin stopped progression for twice as long as Everolimus alone but my experience (6 years + on Aromasin alone) has been so much better than my oncologist expected. She thought I might get two years on Aromasin alone after dropping Afinitor. If your experience is anything like mine you won’t regret only taking Afinitor for a short time. It’s a hard drug in its own way but it’s effective and that makes it a bit easier to endure.
Thanks Kerry for your experience. I would love to get that amount of time on my 2nd line . I agree Afinitor has not been easy for me to take (lots of digestive issues which I have never had in my life) and I have lost 20 pounds because of it. The only reason I persevered is the efficacy from clinical data. If I can continue on just Exemestane and have results like you I would be truly blessed. Take care.
what dose amount are you on? I know you only have what you were able to secure (what a blessing that was for you to get it like that and to get to try it!) . My doc has let me start on the lowest dose of 5 mg and I was so worried about it but I’m actually doing great after 2 weeks! Ironically I had a weird experience within my lower abdomen but it started the day after I started the Tamoxifen(which I’ve had before years ago for a short while with no issues ) and a day BEFORE I started the Everolimus
The dose that I was given from the kind lady (she has since passed on from this disease sadly ) was the maximum one of 10mg so that is what I started on. After 3 weeks I had to abandon it as I had no quality of life at all. I took a 3 week break to try and get my system back to somewhat normal. Then after I had my regular Q3 monthly scans they showed no improvement but no worst....my oncologist and I agreed that was 'stable' in our books and move forward. Then we discussed me returning to take the Afinitor in some capacity. I told her I would cut in in half with a pill cutter (which we both know the manufacturer disapproves of but we were happy to continue that way). So on May 29th I started back on approximately 5 mg per day. My system certainly isn't perfect but at least much better and I have stopped losing weight . I have scans again in a month so we will see if it is working anyway? My oncologist and I have a very close relationship and she really fights for me.
I am so happy you are tolerating your dose well. That's wonderful and may it continue for you. When I took Ibrance 125mg and Letrozole for 5 years I never had any side effects at all so this threw me for a loop. Take care.
Wow this whole thread has so many new things to investigate! I'm going to have to come back to it again later so I can watch that video and take notes about other's trials etc! I've just had to come off the HOPE trial I was on, after my liver progressed further, and been on Exemestane for just 2 weeks (all great and no side effects with the steroid mouth wash helping). I'm not thrilled about next options after this, that my doc suggested (Xeloda) so eager to wade through this new info here, as I just got blood drawn for the Guardant360 test (learnt about it thanks to you all here) and waiting for the results!
Smokeyd when at a similar point, wishing you much success with the Taxol!
Yes, so much info in that video, took me a while to go thru and tried to make notes, but dizzying lol, so much information! Good luck with the test results. Thanks, fingers crossed that Taxol is manageable & knocks down the progression!
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All very valid points that you make. I'm a very active person who also teaches fitness so the issue with nerve damage and the taxanes was something I have worked hard to avoid . Yes those old chemos were awful! Red devil is Adriamycin, then I had Cytoxan and Taxotere (but cut it short to avoid the nerve damage). It's great red devil is now in pill form, that takes half the stress away for patients! I also did not know Herceptin is now available as a pill form too. Things really have changed so much in the last 18 years since I started this journey!!
I wonder if they do that here in the States too? 
Soooooo excited!
Ibrance after anti-hormone drugs?
Blood biopsy
Changed from Ibrance to Afinitor
Afinator and Exemestane
