Been through the wringer and back over the past month. Scans showed progression. Had bone only mets and now showing inflammation in my lungs. Had more scans and genomic testing for mutations and it turns out I have no mutations that have been studied yet. My oncologist is putting me on Xeloda and says I don’t have many options after that. I’m praying Xeloda works for me for a long time!! Has anyone here been in this situation? I’m scared to death. Up until now, life has been extremely tolerable. My palliative care team has my hip pain under control. I should be grateful, but I’m angry because I feel like, after just 22 months, I’m nearing the end of my options. I pray for a much longer life. I believe so much in God and I know He will guide me.
Thank you for listening and giving me strength to carry on. This beautiful community of people is so special to me. 💜💜💜
Jody
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CTGirl1962
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Letrazole did nothing for me too but I went to Abraxane rather than Xeloda. I can’t believe that you’ve run out of options so quickly. I don’t know what mutations I have either so I haven’t had any specifically targeted treatments. After Abraxane I went to Afinitor and Exemestane. That was mid 2016 and I’m still on Exemestane.
At various times I’ve had scans reported with ground glass appearance in my lungs but ultimately it hasn’t advanced to anything that has caused concern.
The last time I saw my oncologist she told me that I have very many options ahead including trials. I’m still on my third line after nearly nine years so I utterly reject your oncologist’s claim that you’re out of options. You got more time out of Letrazole than I did and while the first AI didn’t work for me the second did (but I did IV chemotherapy in between). Letrazole and Exemestane have slightly different mechanisms and it’s very common that oncologists try both, usually one after the other.
Although I don’t usually recommend it because our medical system is different to yours, this time I’d definitely suggest that you seek another opinion. Your oncologist seems to be more pessimistic than your circumstances call for. Maybe because the genome test didn’t throw up a known mutation your oncologist thinks that the unknowns will adversely affect your outcome but all I know is that I am 100% ER+ and 80% PR+. That’s it. We don’t have ready access to genetic testing so for anyone not on a trial (when you can get genetic testing done in the US) it’s all trial and error. Guesswork in other words.
Your oncologist needs to pull himself together and do his job properly. Giving up this early with your mets is ridiculous. On another site there’s a lady who’s racked up 22 years at stage four. At one point her liver was filled with mets and then Herceptin was trialled and she went in it. Within months she was in remission and stayed that way for nine years. Sorry if I’ve repeated this story but it bears repeating. There’s women with serious lung mets who are still pushing forward. Lung inflammation doesn’t have to mean mets.
Like the British said during WW2, keep calm and carry on. And consider getting a second opinion. It can’t do any harm.
I completely agree. My onc tried to pull the same thing and I came back to this forum looking for help and information to make informed decisions. I just do not get why these individuals are in the healthcare industry with these attitudes, especially cancer for goodness sakes. I demanded tests and I am going to demand more. Everyone of us needs to be informed on our options and ask questions. Tests should be done often. Our original dx could change. For a dr to tell me that I am hormone therapy resistant after just 2 meds, without confirming with an ERS1 test. You have many other options and all of us should now our profile to determine what is best for us with what is available and less toxic. komen.org/breast-cancer/met...
I’m so sorry your oncologist seems to be looking at the glass half empty!! If Ibrance/Letrozole are the only treatment you have had so far, there are still many options left that are available to you!! I can’t imagine what your doctor is thinking?! Or not thinking?! In my experience Faslodex would be the next option and works wonders for so many people when Ibrance/Letrozole fails. Exemastane is another great option. From there, Xeloda is a good option, Trodelvy, and a number of other IV chemos are options. None of these are mutation dependent. Please consider a second opinion, your life is very worth it, as you know. Take care and I hope you find the many options that are available.
Where are you being treated? If you are not at Sloan Kettering, I highly recommend a consult there. Why not have you on Faslodex if Letrozole failed? I have to believe there are more options!!!
I've gone to Sloan Kettering twice for second opinions and was quite pleased both times. Even as far back as 8 years ago when I started my metastatic journey, the doc said She had plenty of options ready if Ibrance , Faslodex, and Xgeva didn't do the trick. They have been marvelous drugs and the only major side effects have been diarrhea and fatigue and thinning hair. If any of you have diarrhea, I absolutely recommend finding some good prebiotics and probiotics. (they help with constipation as well as diarrhea.)
To management: I’m not trying to sell anything. Just sharing info. If you don’t want me to respond in this way… please kindly let CTGirl1962 know that I tried. Thank you for your consideration
I’ve used several brands. The Garden of Life has probiotics, prebiotics, and other things like ashwagandha to help with stress, or ingredients to help with vaginal care.
Currently I’m using a probiotics and prebiotic fiber put out by Grow Young Fitness.
They both have helped tremendously, but sometimes I have flare ups that last for months anyway.
I'm so sorry you are going through this and that your oncologist is telling you there are not many options after the Xeloda. I would definitely seek out another opinion before switching meds to see what other options you might have. In the meantime, I am sending you hugs and prayers. Hang in there.
Sorry to hear about progression. If it were me I would consider a 2cd opinion before agreeing to a chemo drug as a second line of treatment. A second line after letrizole and Ivrance is often faslodex (that was my treatment after letrozole and Ibrance didn't work anymore - faslodex is not chemo - it worked for a year, it works longer for some people. Then I got genomic testing again (second time) this time I had a mutation, changed treatment. Wish you the best.
Agree with all of the above. Definitely get a second opinion with an oncologist who is a Breast Cancer Specialist, preferably at one of the cancer centers located throughout the US.
Thank you to EVERYONE who has responded!!! You have given me peace of mind and then some!!!
I do go to a very reputable cancer center in the northeast (Yale Smilow) and they are big with clinical trials. My oncologist is only a breast cancer oncologist. She does nothing but breast cancer, so I believe she is extremely knowledgeable.
I am now armed with a lot of information from all you lovely women and have requested a telehealth visit before beginning a new treatment (Xeloda). The center immediately responded to my email and set me up for next Wednesday with my doctor. She is a lovely and kind soul so I cannot believe she is being inadequate with her treatment of me. Perhaps she is overwhelmed. Not sure. She has even offered me help with other issues I am having trouble with that does not pertain to the cancer. Anyway, my husband will be on that call with me and hopefully, I can get more answers.
Thank you, all, for your concerns and help. I am so grateful for you. God Bless!! 🩵🩵🩵🙏🏻
Like the others I cannot believe that you are running out of treatment options. Can I suggest that before you have your telehealth call you write down all the questions you have, leave a gap and when she answers write down the key words so you don't have trouble remembering what she has said. I have done this every visit to the onc and often look back over the answers. My brain isn't what it used to be.
Xeloda is tolerable and you can control most side effects. To help with hand foot issues I use diclofenac topical, bag balm and eucerin. Also take oral quercetin with bromalin. Consider adding oral Ivermectin (for humans). I take 0.4mg/kg Monday thru Wednesday each week. All Mets have disappeared and primary has decreased to 1/3 original volume. Avoid folic acid supplements and omeprazole. You should do fine.
Hi!! Thank you for the recommendations!! Can I ask when did you start Xeloda? Was it your 2nd line? I was on Ibrance and Anastrozole for 18 months until it failed. I am just wondering.
I’m thinking (as the other ladies are) that it’s kind of early on to start Xeloda. That there must be something else to try before something so intense.
I have a rare and aggressive cancer , mucin producing urothelial adenocarcinoma. My first chemo (FOLFOX) was started May of 23. It was only considered to be palliative as tumor was too far advanced for surgery or chemo. After 2 months of this combo I developed significant neuropathy with very little effect on tumor so it was stopped. Genetic testing showed tumor was high PDL-1 so I started Keytruda and Ivermectin. The Ivermectin augments efficacy of Keytruda. Also switched from the 5-FU that was a component of the FOLFOX to Xeloda at that time. After just 3 cycles my CEA dropped to normal and Mets/primary had significant improvement and next scan showed all Mets were gone and primary was now 1/3 the size. CEA has since climbed a little but no other evidence of cancer. Next scan in March. Stay positive, pray, keep moving and do your own research. Lots of new things out there. I got my things in order and did not expect to be here now but here I am and doing well. Hope to go skiing next week. Cheers!
xeloda was my third line: Ibrance (1 year), Faslodex (2 months), then Xeloda - worked for a year. I am on my sixth treatment so you have lots of options
There is no definitive data on this but omeprazole may decrease efficacy of Xeloda. I think it’s best to switch to famotadine 20mg twice daily. That said, ulcers need to be addressed and if a famotadine trial does not work for you stick with the omeprazole. I was on omeprazole for years and successfully made the switch. `Cancer can be very stressful and finding ways to relax is very valuable. I hope this is helpful.
I'm sorry you have progression . I see others on here that do really well on Xeloda and I agree with the others that you will have more options ! Regarding Xeloda I've read that you should watch your folic acid intake as it can make the HFS worse .
I'm glad you saw the Dana Farber YouTube link on Bellasmom's thread . It gives me a lot of hope !
We are here for you and I agree , God is watching over us . XO
I’m going to talk with the pharmacist regarding what not to take with Xeloda (if I do happen to start on it). I have been wanting to take Black Seed oil caps, but I’m not sure if it will interfere with my treatment meds. 🤷🏻♀️
hiya - such a lot of good advice and hope this gives you the confidence to challenge such medical negativity and achieve the state of living with stage 4 as a chronic disease. Some fab diagrams of 2nd3rd and 4 line treatments for hormone positive cancers. You may also be HER2 low without realising it (as I was) 2.5 yrs ago as it was classed differently then ie her 2 negative and this also opens up other possible treatment options. Best wishes.
I have thought it curious that when I was diagnosed with breast cancer in 2010 (Stage 3), I was HER2+ and did a year of Herceptin infusions. Fast forward 12 years and now I’m Her2-. I thought that was so strange!!! I just may be Her2 low. I’m going to ask about this, too!!
The EMBRACE Metastatic Breast Cancer program at Dana Farber is outstanding. Dana Farber makes all the presentations from the past two years available on their website. You will be able to hear world renowned internationally recognized breast cancer specialists talk about the latest treatments. There is much to be hopeful about. Anyone who tells you differently is behind in the science of breast cancer research.
I’m on xeloda for 1 year.. really feeling well after failing ibrance and verzenio in 2 years.. I felt terrible like I might die soon but I just felt better and better on this drug…. Except for HFS but no fatigue or N&V or diarrhea so I’m grateful for that and that it’s working. Plus my 2nd opinion dr at DFCI told me two hopeful things 1) thst there are many options later with new drugs coming along behind those too… and 2) thst her mother in law stayed on xeloda for 8 years. So chin up. This could be just right for you and if not you will get something else. We all seem to get many drugs just in a different order. I hope that was helpful. Meanwhile I am feeling so well I am on a 10 trip to NZ and just spent the weekend exploring the capital Wellington which included a long E-bike ride along the gorgeous coast with my hubby and BFFs. I really hope that this will be a great drug for you and you’ll be back to do the fun stuff soon!
Oh. Em. Geeeeeeee!!!!! Thank you soooooo much for such an encouraging reply!!! I have a scheduled telehealth appointment with my doctor on Wednesday for all my last minute questions and then, I’m on to my next treatment!!!
Enjoy your trip!!! I’ve been following you and your wonderful trips since I joined and you are living your BEST LIFE!!!
I’m so happy for you!!! Perhaps we can meet up some day!! We are both from New England!!! 🦞🦞🦞🦞
I would love that and have become friends with one other Mets thriver and we like to meet for e-bike rides. I’m turning some of my advocating energy to try to replicate what we had in Nz when I lived there.. an org called Sweet Louise is a national charity which coordinates regular morning coffees in local regions so that we all know each other. I just had coffee on waiheke island with my friend also with MBC… in a small island of 8k I know several women.. but moving to the Boston area I don’t know any except for the gal I met here… that I cycle with on occasion. So I am hoping to help connect people.
That would be wonderful!! Coffee, I can do!! Biking, I cannot!! 🤣
Maybe my hip pain will get better on new meds and I may be able to bike!! Who knows. Either way, I’m looking forward to meeting people in our situation. I know no one in my area. Mariootsi and I both go to the same center, however!! 🩷
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