About 18months on Ibrance/Letrozole then progression to Liver. Been on Verzenio now for a short period thus far and Oncologist wants to do 9 Rounds/Weeks of IV Chemo. Has anyone had a similar experience? After the 9weeks possibly back on Verzenio or on Xeolda. Diagnosed De Novo so this will be first experience with Chemo. Just wondering if Oncologist is jumping the Shark here and should I get 2nd opinion?Asked to have a Liver Biopsy and Oncologist agreed reluctantly so having that this Friday. Any info/help and recommendations would be greatly appreciated! Ty🙏🏼❤
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AutumnLove
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After 15 months on Letrozole/Ribociclib I switched to Xeloda. At that time I searched a second opinion and the therapy was confirmed. I had a liver biopsy after Xeloda stopped working. That happened because I changed hospital and oncologist. I think that a second opinion is always useful
I had Letrazole (big fail) and rapid progression so I had 9 rounds of Abraxane. That's actually 18 weeks of infusions though with two weeks on and 1 week off. Some clinics do 3 weeks on and 1 week off.
I'm a fan because it worked for me and apart from hair loss there were really no problems. It's possible that you might feel nauseous but there's drugs for that and I kept Pramine close at hand just in case. I'd have the therapy again if I had to. I've still got the wig after all!
Whether you get a second opinion is up to you. I didn't but that was my choice although every doctor I saw had a different opinion about how many rounds I would have and kept changing 9 downwards and the next time I saw the consultant she'd changed it to 9 again.
The fear of IV Chemotherapy is greater than the reality or at least that was my experience. I'm still stable seven years later so I have no regrets.
Wow! That was such a great message to read this morning! It's been a whirl wind worry, stress, crying ect sense the progression recently. Your comment is so appreciated and hopeful❤Thank you🙏🏼❤
Had chemotherapy in 2015-2016 to attack bilateral breast cancer. The Hormone positive in the left breast did not clear out. Very fortunately, the Her2 Positive in my right breast and twelve affected lymph nodes were totally decimated by the chemo and have never returned. It turned out that the Hormone positive in my left breast had also been in my liver in a large tumor which reared its' ugly head as cancer, in 2019/20 (biopsy on New Year's Eve). I was then told that I was De Novo. The point is that the chemo did a wonderful job. Yes, I lost my hair but the HER2 was gone and is still gone! My opinion lines up with Kerryd22. I hope the best for you. Chemo is effective, in one woman's opinion. Let us hear from you and good luck with your decision.
Hi Kerryd22 so encouraged to get your view, I’ve been telling myself that the fear is greater, but it’s still not easy! Trying to carry on and hide my diagnosis from the naked eye, now I know it will be difficult to do! First infusion next week Tuesday, guess I’ll know how I’ll by cope then.
A lot of people I meet don’t know I have cancer or think I’m cured if they do know. When I was folically challenged I wore a wig when I went out. One time I was talking to an elderly friend and she was amazed I hadn’t lost my hair because she had when she had early breast cancer so I broke the news that my perfect bob wasn’t natural. 😂 Humans can be surprising sometimes. I thought it was obvious that my hair wasn’t real but it wasn’t to everyone simply because they weren’t looking at me as a victim. We have a Sudanese community in our area and the young women frequently wear wigs and no one thinks anything of it. These days people are used to brows that have been modified or enhanced. I thought of getting my brows tattooed because they grew back very sparsely but decided against it because with my glasses on no one noticed them anyway.
I’ve read posts from women who have been on chemotherapy long term and it reminds me of what warriors we are. Life is valuable and we’re going to keep going as long as we can but it’s not a trouble free journey or not very often anyway. We may not see ourselves as superheroes but that’s what we are.
Oh, so well written/ said! All I could think is if the Onc tells me next is IV chemo, I will just have to put on my 'big girl pants ' and endure it bravely like so many others! Because as you said, life is so worth it! And we really are superheroes! ❤️
Praying you will have a good outcome. Many times single-agent chemotherapy versus combination chemotherapy is used in metastatic breast cancer, with less toxicity and improved patient quality of life on single agents. Your doctor will be able to advise about your treatment. It sounds as if he is working hard to keep the cancer under control which is what we need. If you feel comfortable seeking a second opinion it is always good to have that confirmation.
I am much older than you (currently 77) so I'm not sure my input will be relevant. I have metastatic breast cancer in many sites including my liver. Perhaps my age is the main factor (slowing of bodily changes?), but all seems under control with ribociclib and letrozole, including my liver.
My understanding is that the liver is a relatively large organ which can function well even with tumours throughout it. My bloodwork indicates that all six measures of liver functioning have stayed in the normal range since 2019 when my breast cancer "returned" after 13 years. Many liver tumours have been noted on my MRIs since 2021 with the largest being under 3 cm.
Hi there! I'm sorry to hear about your progression, it's never a happy moment. My doctor switched me from Ibrance/Letrozole to Verzenio/Letrozole to Verzenio/Fulvestrant......and then on to Xeloda. My doctor is not keen on IV chemo and has saved it for last....last....last. It's never ever a bad thing to get a second opinion, and if you are thinking about it, it will put your mind to rest. Hoping you get the answers you are seeking for your care, take care!
I agree and have a similar treatment path. After 18 months on Ibrance I had progression and was switched to Verzenio, but it wasn’t different enough, had progression to liver, and went to Xeloda (which was initially very effective - many people have good results using this on liver spots). Now on Piqray. Like Fiercefighter13 , I have an oncologist who wants to save IV chemo for last which is fine with me. It seems a bit unusual to go straight from the CDK4/6 drugs to IV chemo when there are other pill-based options - your onc may have good reasons, but it doesn’t hurt to get a 2nd opinion.
I’m about to start IV chemo for the very first time and same as you, it’s unknown territory. I am encouraged by others that have said it isn’t too bad - I’ll be on taxol. I’ve lived pretty much ok since Jan 2020 - my fear is now I won’t! I will try to cold cap to keep hair, but not sure how I’ll cope with no eyebrows or eye lashes!! I want to continue to work for normality and to keep my sanity.
If I had the choice of chemo then back on to oral meds, I’d be happy with that. I’m on Taxol until it stop working. Good luck to you, and with the liver biopsy- do let us know how you get on.
hi Nx. I get it. when I lost all my hair, everywhere, during chemo back in 2013...for me it was harder to lose my eyebrows and eyelashes than my head hair. maybe because eyebrows frame your face and eyelashes frame your eyes? I would look in the mirror and felt like my face had disappeared. for someone who did not wear much makeup....I learned how to 'draw' my eyebrows with an eyebrow powder and eyebrow brush....initially they looked like caterpillars, but I eventually learned and have to say they looked pretty good...I would actually get compliments. and I lined my eyelids with eye makeup powder and used a small slanted makeup brush.....and it looked way more subtle than a thick makeup pencil. it really gave my eyes definition. I still do it to this day....I like the look. as far as my head, I couldn't tolerate a wig...too scratchy on my bald head...so I wore hats and bandanas...and sometimes went commando😉. but always had my eyebrows and eyelashes 'on'.
so that was back during my primary BC diagnosis, before the mets. so I started noticing eyebrows a lot more (eyebrow obsessed...lol) and realized a lot of women...both young and older...were having cosmetic tattoos to enhance their eyebrows. and I thought...wow....if I had done that before my chemo...I would not have had to worry about my eyebrows at all. I was not anticipating mbc but I am lazy when it comes to make up and decided I didn't want to keep drawing them on (they grew in very skimpy after the chemo). I went and had them cosmetically tattooed and they look great and I spend no time on them. (they are different than regular tattoos...they do fade after a couple years and you have to get a 're-touch' if you want to keep them up.) but soooo worth it. they have different methods....microblading, powder effect, combo of both called hybrid. most cosmetic tattoo artists post pics of their work on their websites or on Facebook.
so now, whenever I hear of someone new starting IV chemo...I always mention the eyebrow tattoo's. not sure if this is for you...it is not for everyone. but throwing it out there, just in case!
boy, this ended up really long.
best wishes to you and hoping🙏 the taxol does it's job!!! you've got this.
Thank you so much Carole for this, I know that you have not been too good yourself lately- I do hope you are doing better x
I will certainly look into this, at the moment I’m on blood thinning jabs (blood clot found) for another 2 months so will check which treatment would be suitable, don’t think Microblading is because of jabs. Luckily there are alot of make up alternatives too, it’s so true - I was fixated on losing the hair on my head but realised I’d miss my eyebrows and lashes more! Doubt I can wear my contacts either - great to have stage 4 cancer and still be vain 🤣
First infusion tomorrow- don’t think I will bother with cold capping as there isn’t an end date to this treatment and I don’t want to be in the chemo ward longer than needed. I’m speaking to chemo nurse today so will ask her. Im going away next week so have put off getting a port till I get back - veins are in for a treat! I’m praying I tolerate this well and I can carry on as I have been (albeit bald) hopefully allowing me to resign from work when I’m good and ready
a little vain is good. it means we're still alive! and we still care! my body is a mess....my spine/body twisted up like a pretzel. I barely leave the house. yet I still care about my hair and face. it makes me feel better mentally. I tell my two adult daughters that when I stop wearing lipstick💋, then you can worry😉...ha!
so how did your first infusion go yesterday? I'm hoping it was uneventful. and of course, wondering how you are tolerating the taxol so far? I hope good🙏.
Sorry for my delayed response - I do hope things are better or getting there at least and you’re not in pain. It’s great we still care for sure, here’s to hoping that we continue to give a shizzle for many many more years to come ❤️.
Thank goodness first infusion was indeed uneventful- I was more overwhelmed when nurse told me how many people have chemo on a daily basis. I tried the cold cap only because she said “if you don’t do now, you can’t next time” that was a great incentive! I love icy drinks so this probably helped… I’ve been monitoring hair… all intact thus far! I’m having a break after 1 infusion, so next set of taxol will be wen I’m back from my holiday. Onc was desperate for me to have at least one infusion before I went away. Once I’m back I’ll also be getting port installed- my vein was black and blue after 1st infusion-so I definitely think it’s a good idea.
Take care Carole, sending you a gentle squeeze x I wish I could advise you on your health issue but I’m rubbish! Perhaps ask your daughter to give you a gentle massage with organic oil? I love almond - it’s really helping my arm suffering with lymphoedema, loosens the tightness as my arm as it feels like it’s about to burst.
Hey AutumnLove, just chiming in here. Always go for a second opinion. It may take a bit of legwork to set up, but in my opinion well worth the peace of mind. And to be honest, the second opinion should be an entire different onc outfit, not just someone else in the same practice.
I too am facing the same situation, 18months on Ibrance/Letrozole then progression to Liver (3 'spots'). The radiation oncologist mentioned chemo, but I see the medical onc tomorrow so he said he will provide more info & treatment plan options. But after reading so many comments where there was no regrets with IV chemo, I'm thinking it may not be that bad (other than the hair lose). Was wondering why reluctant to do liver biopsy. Was wondering the same so confirms spots are cancer but maybe onc just thinks it has to be so biopsy isn't necessary? Wishing you best of luck with the biopsy & treatment plan. 🙌❤️
Good morning AutumnLove, I'm not sure how much of the disease you have in your body, but I can tell you that my first line of treatment with Ibrance, Letrozole, Exemestane & Lupron injection caused an ESR1 and Mtor mutation. I also read that this happens to over 50% of women who take this endicrone therapy. What the doctors do not look at, and I found this out through my integrative oncology nurse, is as an example: When I was diagnosed and found out that my cancer was "hormonal driven", I was 90% ER and 60% PR. So, here lies the mystery, The doctors want to block everything hormonal driven and maybe that would make sense, but they are not focusing on the 40% of cells that are not driven by hormones and end up mutating because of it, therefore, leading to progression and eventually the liver. At any rate, I believe that jumping the gun to IV Chemo is extreme. I had gotten a 2nd opinion and was put on Xeloda (I ended up with 3 lesions on my liver) and have been doing very very well. I had a follow-up PET Scan 3 months into Xeloda and 2 of my lesions are no longer visible. With that being said, if you feel unsure about the treatment, definitely get a 2nd or even a 3rd opinion. I hope this helps.
I'm so sorry about the progression and the emotional toll it is taking. I have such a hard time making important decisions these days...I don't want to make the wrong one. I am going through that myself at present. but in your wife's case, I don't think there is a clear right or wrong decision. just two different approaches...one more aggressive than the other. but both sound. I guess if it were me, I would question the oncologist as to why the rush on the IV chemo without giving the verzenio a chance to see if working? or try the Zeloda? and maybe he has reasons. your wife is young. or maybe this is his approach on many patients. can you ask him to explain his reasoning? I do realize some oncologists are more communicative than others...I fired my first😉. I found IV chemo to be doable, but rough....although that was back in 2013 and the red devil and all. but I have heard it is much more tolerable now. remember, you two are the captain of the ship. ultimately your decision. and I agree with the others who said yes to the second opinion. always a good move but especially if you have concerns. good luck!
Sorry for such a belated reply. Did your oncologist explain why she was switching you from Versenio? Was there progression in the liver? My assumption would be that oncologist wants to zap the liver mets and then move back to hormone therapy?
i have not had that experience. thus, not able to comment on that. i do suggest a second opinion. most quality doctors do not have a problem with a patient getting a second opinion. with the initial dx, the onc suggested i get a second opinion, if i felt i needed it. i like having another set of eyes, and knowledge, looking at results and discussing a plan.
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