What Happened After I Stopped my Cancer Meds - Zoladex, Letrozole, Ribociclib | My Cancer Story
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- เผยแพร่เมื่อ 31 ม.ค. 2022
- These are all changes that have happened in my body since stopping my cancer medicine in March. Also, Happy (late) New Year! The last few months have been super busy, but I will be getting back to uploading regularly :)
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I literally could NOT be happier for you! I’m 61 and also struggling with the decision of whether or not to continue with aromatase inhibitors. I had to stop Letrozole right before Christmas due to horrendous side effects and just as I was feeling good again, I began Anastrozole. (Arimidex) I’m only on day 3 so we’ll see. My oncotype score indicates that I have a 3% chance of recurrence within 9 years WITH the AI and a 6% WITHOUT. Very hard to suffer and make a decision over 3%. The side effects of these meds are no joke even post menopausal. In the meantime I have started seeing a functional doctor in addition to my medical team. My thought being that should I decide to stop the AI I want to be in optimal health which would also deter from a recurrence. It’s a balancing act but I cannot imagine “living” with these side effects for 5-10 years. I love seeing and hearing you so happy and mostly just FEELING good!! FIGHT LIKE A GIRL my pink sister! 💪🏼💗 We are our own best advocate.
Thank you! I really hope anastrozole is better for you than letrozole. Good luck to you!
I have the same diagnosis. I have the 3 percent and 7 percent. I chose no tamoxifen. I pray you don't have any recurrence.
@@Ranchladytmdhow are you doing?
yeh i couldnt take the side effets of letrozole the 1st week. i was ill and in bed everyday. that is not enjoying life now. i said no to chemo bc it would increase my chances of cancer not coming back by 8%. yeh i may be playing russian roulette w/my life but i want to enjoy each and every day i have left. i believe in feeling good w/as little pain n suffering possible
I, too, also had to stop my cancer drugs. Stay strong Pink Sister!!!
I’m SO happy for you!! You deserve this!!
I'm so pleased that you're feeling like yourself again Samantha and able to enjoy a good quality of life, as well as being able to sleep. Thank you for sharing your journey so openly and honestly. May you keep well and strong 🤗
I totally get it Sam! You do what's good for you!! I support you 100%
So glad for the update you look so much better - and as we have told you before your decision is yours alone to make and it has so obviously been the right thing for you.
Congratulations on taking control and on doing so well .
Keep well and take care.
Jan🇬🇧
Samantha I am so truly happy for you, I was when you made your decision and I’m thrilled now😊❤️your information is important for people to here good and bad and you’re always so prepared 🤩 I look Dow to seeing you soon🌹
G-d bless you! I hope you never get cancer or any sickness ever again! Enjoy life & thank G-d! I’ll be praying for you. Happy & healthy 2022!!
Good for you! No one wants to feel like crap all of the time. Quality of life is of the utmost importance.
People who have not looked death in the eye don't have the same point of view. I understand wanting not to feel terrible the rest of your life even if that means your life is longer (and we have no way of knowing that). I hope that you have the best life that you can and make the best out of a bad situation. 💕
Thank you :)
I would respect any choice you make but am so happy to hear you are feeling well and enjoying life. Thank you for the update❤️
Happy for you. Prayers for your continued good health! 🙏🏼🙏🏼❤️
Lovely to see you Samantha. I think you made the right discision every one has to do what they think is right for them. Your looking very pretty. Really enjoy your videos. Take care. Love and hugs.xx❤️🇬🇧
It is obvious that you are watching your health very closely! I am so happy that you are feeling good!!! yay!!!
I love that you’ve taken control of your life! Quality of life is so very important. Some people would rather be miserable and live a couple of extra years instead of feeling good for a little less time. I’ll take quality over quantity any day! Besides, it’s not our timing, it’s in God’s hands and we have exactly the number of days that He has determined. Make every day count and enjoy every moment….none of us know if we’ll still be here tomorrow, we only know about this very moment we’re in, so make it count! Wishing you many, many more good days!
That’s true. Thanks!
You are Awesome! So glad you are in control and listening to your body. Every action has a reaction when it comes to pharm. Here is to continued health and most excellent adventures!
Thank you!
I’m so happy for you Samantha. You did the right thing.
Awww so FANTASTIC Samantha! Great video and great news! How amazing for you to look and feel terrific and have such appreciation for the many little things in life (not feeling sick to your stomach, flowers etc). You have followed your on path and must feel so much control over your life now- something we lose during treatments. We are all adults, here and have the same info given to us by our doctors and can make our own decisions that are right for us. No one should mistake your honest videos, which document your experiences, with you trying to give advice to others. I have watched every video and you have never told anyone what to do or preached a certain path- you just shared your own thought process, decisions and journey- so thank you for that. Sooo glad you are getting regular scans so you can continue to gather information about your health and continue to make decisions with all of the info. Blessings and love to you Samantha💗
Thank you! I appreciate the kind words
Thanks for the update! So happy for you, you look great btw!
So proud of you! Stay strong and healthy
Samantha, you look like you are feeling so much better. So happy for you. It’s good that you are regularly getting scans. This is your cancer journey, so you do what’s right for you. Just stay on top of it with checkups😊
Thanks, I am feeling great!
It makes me so happy to hear you’re feeling better! Just normal…being able to sleep, being able to eat, all these things so many of us take for granted. You made the right decision!
Thank you!
You’re inspirational so proud to hear your story ❤️🙏🇦🇺
I’m so appreciative of your videos!!! I wish I would be documenting my experience as well. Excellent work!
Thanks, I'm so glad they are helpful
I’m so glad that you have a better quality of life now. The Lord bless you❤
Well done girl! I love hearing you explain your critical thinking in this video! ❤️ You are a talented speaker. 🙌
Appreciate you listening :)
So sorry about your health. Your are a direct, spunky, lively person and that will carry you forward
Thank you
Lovely to see you looking so well and happy. Xx
Good for u! It must be awesome to start to feel normal again. Sounds like u made the rt choice for your situation. I'm so happy for you many 🤗and prayers 🙏u cont to get your life back!
Samantha,you look marvelous
Your decision is personal and you did what feels best for your body
Many people,including my Mother,stopped Chemo and lived a long and good life till well into her nineties
Big Hugs
Wishing you all the best
One can never know how a person is going to handle great adversity. Samantha is a young woman who’s trying to handle a life threatening situation that came out of nowhere. Please take that into account when you leave a comment. 💟☮️☯️
May life bring you all the joy you’ve ever wished for.
It made me happy to see you so happy! 😄
So happy you are feeling better!❤
Samantha I am so very happy for you honey. You look So cheerful and happy and may I add absolutely beautiful.
Thank you so much for this Samantha 💜 I came off the same meds in June and this was the only proper account of what to expect I could find. It was really helpful and great to know someone else had similar experiences. Especially the bloating, I really wasn't expecting that 😅
Of course, it’s the whole reason I made it! I don’t think I have ever been that bloated before, even so far during my pregnancy it hasn’t been that bad
Wow, both my White and Red blood cell counts are STILL below normal and it's been 2.5 years since radiation and 1.5 years since chemo ended. My lymphocyte count just squeaked over the minimum range for the first time since mid 2019, I was so excited! Glad you're feeling good, all the best!
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Thanks Samantha, I’ve never felt more seen. I’ve just started this journey and it’s lonely sometimes- when ppl around you don’t know. I shared this with my husband.
I’m glad this helps. Hope you’re doing well 💕
So incredibly happy for you☺
So very happy to hear how well you are doing.You look happy ❤
Thanks, I am :)
Prayers for you as sweety you are so courageous and I applaud you for being so brave and beautiful!!!
I’m happy and supportive of any decision you make for YOUR journey . Every person is unique and so is their cancer journey . I experienced the same thing in my comments when I stopped chemo. People accused me of killing people by posting my decision. If folks are watching YT in Liu of going to their doctor , they have more issues than cancer🤷♀️
Thank you! Lol that’s sooo true. Like I don’t think I’ve ever claimed to be a doctor
The information could kill someone. No two cancers are the same. This decision could terrify someone or embolden them to skip treatment that they desperately need. I'm a breast cancer survivor. I had a mastectomy, chemo, and took 6 years of Tamoxifen. I'm still here 12 years later. I lost my dearest friend to this disease. She fought for other women. This is not advocacy. It's selfish and someone will find it, toss their meds, and die.
@@TikkunOlamEighteen i doubt someone elses story will effect them. i too refused chemo. its the most horrendous way to poison oneself. my goal in MY CANCER JOURNEY is no pain n suffering. if it takes me out sooner than later i am grateful for the time i have living and enjoying life
You cant concern yourself with other people when making decisions about your own treatment. People who try and bully you or make you feel guilty are beyond contempt.
We deserve to have all information from different people and their experiences. Why is it that so many people feel like it is morally wrong to not see your doctor? To go off your meds? To not get regular scans? To have a baby without doctors? Like, I've never heard of any religious document that says that people need to see their doctor and always follow their instructions. If you're not religious then where is the "morally" wrong coming from? Shouldn't you support everyone making their own health choices?
People don't understand unless they've been in your shoes. It's been 5 1/2 years since my breast cancer surgery with the tumor being ER+ &PR+. I was recently told I will need an additional 5 years on Letrozole. My prayers are with you and that things go well for you. Each person's cancer journey is unique to them.
Very interesting! Way to go!!
I am so happy you are feeling better now !!
Me too!
I agree with you about normal fatigue and fatigue from medicine. My chemo has me pretty fatigued add to that being old too . Getting ready to head into my chemo right now. Glad you are doing so well. Take care and please keep us updated.
Yes, chemo fatigue is the absolute worst! Hope it's going ok for you
@@SamanthaL yes its going well I came home from maintenance Chemo today and took a nice long nap.LOL
So happy for you!!
Well done , life has to be lived to the full 👏
I’m very happy for you. God bless you!!
Thank you for the update - you had been on my mind! Wow, so interesting how our bodies want to be "normal" and how the meds suppress this. I'm sure you enjoyed the weddings holiday much better as you were feeling better all the time. Doctors don't get how important it is to actually be able to sleep uninterrupted. I'm on Femara, for 10 years?!!! Ahhhhh it's just daunting to think about. All the best and XO from Colorado
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There's many healing prayer videos on utube and they've been so healing for me n my family. My son had chest pain and it went away when I started playing one of Benny Hinn's healing church service utube videos. So some have really been worth a try , I hope they can help you too.
Thank you so much for this video, I have just stopped Zolodex and Arimidex after 5 years and I have been trying to find a video like this. I appreciate your honesty
How are you feeling if you dont mind me asking?
Thanks for watching! Congrats on making it 5 years :)
@@jakeenabarkley1986Sorry I have only just seen your reply! I was very tired for the first 6 weeks or so, despite sleeping much better at night. My night sweats came back for a week or so but they have now gone and I don't have as much knee and hip pain. I am now hoping I can shift some of the weight I have gained.....fingers crossed
You are a warrior. You know sorrow, pain, joy, and peace. You choose how to fight the battle from within. Your tribe, friends, and family support and pray for you. At dawn you make decisions and form a plan that only another warrior can understand. The sunlight nourishes your soul, your spirit soars and you feel peace. Look! Here comes the sun!
I couldn’t be happier for you. 😍
So happy you’re feeling better!!!! 💕
Aww I'm so pleased for you Samantha! 🤗 Well done on making such a huge decision to come off the meds. Quality of life, right? SO important! That's one reason why I declined Tamoxifen. (Had 2 breast cancer diagnoses within 8 months of each other in 2020) After being allergic to chemo twice and numerous infections after mastectomy, seemed like I was never out of hospital and had such a crap quality of life, putting hormone blockers on top of all the other after-effects, was basically a huge no for me!
Thanks! I’m glad you also made a good decision for yourself :)
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How are you doing?
You are looking so well sleeping well and no nausea is fabulous I’m just grappling with my lack of sleeping had new meds for a week and 5 nights sleep have changed my iLife
Samantha NEVER tells anyone to medically do what she’s done - she tells what’s happened to her. And thinking that she’s going to misdirect folks dealing with cancer isn’t giving her or them credit for being their own advocates. If you take nothing else from these videos, take that advice: Be. Your. Own. Advocate. You got this, Samantha.
aw thank you :)
I'm glad that you are better and don't worry about what others say
I’m so glad you post everybody else can do as they please there choice . I think I’m going to stop also …. As I have no quality of life I have migraine daily and feel terrible…. Thank you for sharing all this … your in no way responsible for other people’s decisions everybody has a different experience some women may have no side effects and are very lucky 🍀 I would say of course try then decide ❤
I hope whatever you decide works out well for you!
So glad you are feeling better
Samantha you look adorable! Nice to see you. It's a personal choice to do chemo, radiation or cancer medications. I feel you should be able to talk about your choices.
Unfortunately many cancer patients pass whether they stay on treatment or quit.
I have cancer also I made the decision early on no chemo or radiation if ever needed.
This is my choice.
So great you are feeling good. Enjoy your healthy life! You have earned a symptom free life. Best of everything!
Thank you!
Thank you for doing this video. Being on these types of drugs is not for everyone. It just isn't. Is it risky, I'm sure it is but her quality of life is more conducive to her desires. I will. never shame anyone for declining drugs , chemo, or radiation because all if it is TOUGH and we all have different visions for our lives. I wish you well. Sadly I do have to be on tamoxafin in a few weeks once radiation is done because it is my second time w/ breast cancer so this time I must go on the drug(the first cancer was stage 0 so it wasn't needed) . I am also getting a hysterectomy to help my chances, but this is my CHOICE and I am a good 15 years older than you so my live set-up is much different. I wish everyone on here the best. I pray each woman on here does what is right for her.
so crazy happy for you!!!! PS: my son is having his 18 month scans on Monday. The dread is REAL!!!
Hoping for clear scans!
Hoping for it.
Hoping for a clear scan
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Good luck
I feel what your going through love, all those symptoms your explaining I’ve went through and still going through. I myself was put through chemo induced menopause after doing hard chemo for 3 months but I’m now 43 so it’s been well over a year since I’ve had a period since then and I pray they never come back. The menopause symptoms are still there mostly the hot flashes and they are hot flashes from hell lol…the mood swings were awful and I felt so sorry for my family who had to deal with me lol. Those are better but those hot flashes are still there but not as often like they were. I pray my periods stay away!! I don’t want to go back through all of that again. I just finished the Xeloda chemo pills they gave me as a precautionary med after my double mastectomy back in august 21 but I took it for 6 months and I pray cancer will stay away, I am also no evidence of disease and in remission from stage 2B triple negative breast cancer but my anxiety is so high because of worry it’s going to come back. Anyway I have been working on a video as well talking about my symptoms to share on my channel but I have over a year worth of cancer journey vids I’ve got to edit and share but I talk about the good, the bad and the ugly side to chemo and having breast cancer. Thank you for sharing your journey with us. Sending love from Kentucky 💙
I’m still taking Letrozole, my side effects have diminished to now just aching legs. I’m in my 60’s, so a really different scenario to you. I respect everyone’s personal decisions. I wish you well
I'm glad it's getting better for you and hope the trend continues!
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Have you experienced hair loss with Femara?
@@tenaleverette123 I personally never did with Letrozole alone, but I've been taking it along with Ribociclib(Kisqali) for over 2 1/2 years and I lost about 40% of my hair during the beginning and then it suddenly stopped. Now it still goes through periods where it still falls out.
Thank you for sharing your journey. I'm glad to hear that you are feeling better. Also...holy smoke show....your hair and skin, so girly and you are glowing and look amazing! Sending love from British Columbia (Kootenays) Canada :)
Aw thank you!
Samantha you do look healthy and pretty
I never made any comment here before but I watched all of your videos, I'm so happy for you that you are feeling better , please do excercise ,eat healthy and you will live long healthy life , Last year I lost my sister from stage 3 breast cancer , she had tripple negative inflammatory breast cancer , she died within 10 months , she had chemo , surgery ,radiation , end of her treatment cancer metastasize , so there is no grantee that if you take all the medications and feel terrible everyday will do any good , my one request to you , please eat healthy and workout , you can look into intermittent fasting .Thanks for the the update , I was waiting for this video
Thank you! I’m sorry to hear about your sister. I appreciate the comment and thanks so much for sharing
I'm sadly on tamoxifen and my side effects are horrendous I completely understand why you stopped ✋ 💕💕
Sorry to hear that and I hope it gets better
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There's many healing prayer videos on utube and some have been very healing for me n my family. My son had chest pain and it went away when I started playing one of Benny Hinn's healing church service videos. So some really have been worth a try for us , I hope so much that they can help you too.
I’m pleased for you!
I feel the same I’m in radiation now I’ve been so scared to stop and start kiscali so many side effect
I’m so glad for you I love hearing your stories thank you
So happy for you!🍧🍰
That was such an interesting video, thank you :)
So happy for you. I chose not to take xeloda as a preventative treatment got some negative feedback from people around me. Ultimately we have to do what's best for us. I still remember when I realized I wasn't nauseous anymore. What a feeling 😌 all the best continued blessings to you 🙏 ❤
Thanks for sharing. Glad you’re doing good :)
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How are you doing?
@Salamander-us3ys hi, I'm doing good. Living a day at a time. Still have some ptsd but am working through it. Hope all is well with you.
So happy that your absence was a Good one!
Been there done that however I am a lot older than you. It's the quality not the quantity! I felt 80 years old! Not doing it! Best of luck to you my dear!
Definitely. Thank you!
I get it. I am on same treatment. It feels horrendous. Unfortunately after stopping it for some weeks I had a scan that was not so good. I am back on them now and only by luck. What I am saying is they don’t give you the palbo/Letrozol again if the cancer returns and the scan will say the words progression. I felt so great coming off this heavy meds. Omg you even use the same words describing fatigue…
I was just diagnosed had surgery ( breast). I am supposed to have 35 rounds of radiation and hormones . I have decided to only do 15 radiation and no hormones. I am changing my way of life. Keep posting videos like this because that is why we click. I want to see people that do not take all the meds. Our body can heal itself. If people want to stay on meds and chemo have at it. I think it just mask the issues. We have to get to the root. Thanks for your time. People will always say bad things. Your brave and taking control of your like. You can't stop and do nothing is the point.
Thank you! I hope radiation goes well for you!
How is it going for you?
Just diagnosed.
@Salamander-us3ys Great! Thanks for asking. Went to the doctor yesterday. They bring up every visit about the hormones after giving me a great blood test result, I say the same thing I don't not want them.
I will be needing open heart surgery. If it’s too risky , they just won’t do it and hope for the best . I’ve decided if they can’t do it , I will be stopping my cancer meds . I’d rather feel good and not miserable for the rest of my life ❤️
That makes a lot of sense. I hope it all works out well for you!
Thank you for your follow up. Great your choices despite other’s opinions. I will have similar choices yet I’m much older. NED after surgery . Two of 13 lymph nodes positive so I’m near end of chemo then will have radiation. Doctor already said I would need hormone therapy. Risk of return 13% onco score. ER positive. Only. So your share is helpful. ❤️❤️🥰
Thanks for watching! I hope the rest of chemo and radiation goes well for you :)
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There's many healing prayer videos on utube some have been healing me n my family pretty well. My son had chest pain and it went away when I started playing one of Benny Hinn's healing church service utube videos. So some are really worth a try and I hope so much that they can help you too.
My father has Cancer and I'm thinking of researching on both the genetics of Cancer and Mental illness (I have Schizophrenia) someday. I hope the best for you and my dad. Eating healthier and exercising so I may not have Cancer. I believe there is still hope in this world.
Hoping for the best for your dad and you
Hi, Im 63 and It is such a scary decision to make and I'm struggling to make it.
Had lumpectomy and just had 30 sessions of radiotherapy. Now need to start Letrazole but side effects scare me but don't want reoccurrence of breast cancer.
Thank you for your videos
Thanks for watching, and good luck on your decision!
You do what best for you. No one can say they haven't walked in your shoes. I'm stage 5 kidney failure. I stay sick no one gets it... so you live your life and enjoy it. The lord above is the only one who knows.
Hi from Australia, I was on Letrozole for 6 years and it has ruined my bones a lot of bone pain so if I new beforehand the side effects I dont think I would have stayed on them wish you all the best Xxxx
So sorry to hear about the bone pain. Hoping it gets better for you when you stop!
@@SamanthaL Hi Smantha I finished my Letro 3 years ago and still have the bone pain, lots of love to you Xxx
I'm also stg 4 MBC with mets to spine, ribs, lymph, lung and shoulder/humerus. I've gone thru IV Taxol, radiation for my arm/shoulder, and have been on Verzenio + Letrozole for two years now. My tumor markers are way down and all my ct scans show no new mets. I fully understand why you wanted to quit your hormone blockers. They are NOT fun. I am totally fatigued all the time. I sleep so hard at night and then nap on and off all day no matter how much exercise and movement I do. I'm just wiped out. At least I'm eating well and doing everything I'm supposed to do. I am post menopausal so none of that stuff to deal with but the damn fatigue, yikes. I also had a lot of joint pain when I first started the two blockers due to Letrozole. That seems to have gone away. I'm basically comfortable so I'm going to continue with the drugs and hope for the best.
After all is said and done, it's OUR bodies, OUR lives and OUR treatments if we choose to take or follow them. I hope and pray for you for the best outcome and commend you on your choice to stop the meds. You don't have to convince me that AIs are not so hot. The other thing is that the Letrozole made me gain weight which was actually ok in the beginning. Now, not so much. I don't have the appetite I used to have and I'm starting to drop weight again. I'll just watch it.
Samantha, hang in there, hoping and praying that you are comfortable and staying near cancer free. HUGS.
It's not anyone's business. People leave her alone.
Yeah that decision is totally yours, I'd be more concerned about were Im going @fter I die... Heaven or hell?
Im glad yall had a month road trip. What part of Texas, were yall in? I live in Texas. Good seeing you again on here.
Dallas/Fort Worth area
Ur a ledgend. Luv ya
I have never stopped the ones I am on apart from short periods when I have run out and awaiting a new delivery.I have a rare T Cell Lymphoma called Mycosis Fungoides at stage 2b which is the beginning of the aggressive disorder.The medications and radiation held it in check for about a year but it gets around them and a huge tumour has developed now on my shoulder.
My sweats have exhausted my strength....I with windows wide open in winter..and my legs are like 100 years old after chemo.
Of course, you have the right to stop your medication and you have the right to share it publicly, and you are not responsible for others' decisions, so those who try to put a responsibility on you for others' decisions are gaslighting manipulators.
How is it gaslighting to tell her that a woman with a grade 8 cancer who takes this advice can have a recurrence in months? 16,000 women have seen this. If 160 of them with stage 4 cancer took this advice, at least 10 will suffer bone recurrence, liver Mets, or worse. She will likely delete my comments but I don't care. This is beyond irresponsible and in honor of my dear friend who fought to her last breath to beat breast cancer, I'm calling her out. To do otherwise is to deny the deadly truth about this disease and dishonors every patient who has done positive things for this community and not spent time needlessly terrifying women into declining treatment.
I’m sorry you lost your friend. This young lady has nothing to do with that or with anyone else’s treatment decisions. We all deal with cancer and treatment in our own individual way. Don’t inflict your pain and anger onto a delightful innocent young woman. She is making well-considered decisions for herself and sharing her journey to help herself and others. She has every right to do that. She bears zero responsibility for any one else’s decisions. We are all adults here.
It’s great that you only tell what YOU and don’t counsel anyone else. You would not want to be held liable by the family of someone who died, citing that she/he took your “advice”.
Of course. Everyone’s situations are so different from mine I could never give general advice. I can only share my experience!
Gracias por compartir tu experiencia y mucho ánimo, una pregunta por favor cuánto tiempo normalmente debe la paciente seguir con el tratamiento de Kisqali + letrozol ? Espero tu respuesta muchas gracias 🙏🏻
Usually 5-10 years
@@SamanthaL Muchas Gracias por responder, una ultima pregunta por favor 🙏🏻 los 5 años se toma la misma dosis de 3 pastillas por día?o te rebajan las dosis a lo largó de los años?
Porque tengo el mismo tratamiento actualmente y en mi país no lo cubre la seguridad social (la mutua ) y me cuesta 26,000€ por mes por eso estoy interesada en tu experiencia y saber cuantos años debo aguantar y cuantas dosis por años , muyyyyyyy Amable y lamento tantas preguntas 🥺🙏🏻
I believe the 3 doses per day is recommended but you can talk to your doctor about going down to 2. I went down to 2 at one point to see if I could tolerate the side effects better, but they were still hard. I’m so sorry it costs so much for you. I was lucky to have good insurance and also have other programs in place for cancer patients so I was able to get it for cheap
Good for you prayers
Thanks for indepth info hun
Stopped mine and cancer came back. Think hard before quitting.
Iron overload seems to lead to innumerable problems in people who are not iron deficient. It might be wise to eat a wide range of all the foods one enjoys and to steer clear of supplements, especially iron supplements.
Hot flashes are the worst side effects of menopause! I had a total hysterectomy at 38 and am now 65 and still have hot flashes!
I had horrendous periods all my life. Unbeknownst to me at the time (50), a hysterectomy was such a miracle!!! After that, I started menopause symptoms really bad (I guess like my periods, they had to be bad, too!). I started taking a low-dose estrogen gel. It worked wonders, but here I am 9 years later with a breast tumor that is ER+ (Estrogen Receptor Positive). Fortunately, I had my tumor and two lymph nodes removed. Now I’m on Letrozole (anti-estrogen drug). So I’ve had to deal with cancer and hot flashes at the same time! I must admit, they have simmered down and are tolerable. I feel bad for you having to go through that at 38. It was devastating to me when I was told I needed a hysterectomy. It was a blessing in disguise. I wish I would have just “grown old gracefully”! And not have used the gel. It’s not fair that you are still having hot flashes.
Thank you for your journey and documenting your experience 🙏🙏🙏. You are awesome . My Mom is 83 Yrs old and she just started the Letrozole and she s already experiencing a lot of the menopausal symptoms . Super tired , out of breadth , depression , problem sleeping . She has stage 4 and it has metastasized to her hip and spine . Just want to get your view as what you would do if your mom was in that situation . Also she s paying 5k out of pocket for her 21 days of supply which is another pressure on her . Did you have coupons , payment assistance for your monthly pills ? Can you guide me please as what I can do to get help w the excess cost and then your guidance as what you would recommend your mom having gone through this . 🙏🙏🙏🙏. You re Amazing for sharing your story 🙏❤️
Hi! I’m sorry your mom is dealing with the side effects right now and I hope it gets better. If I were her I would probably stick it out a little longer because it definitely got easier for me after my body adjusted to the medication a little more after 3-6 months. Some people have better luck when they take the medication at night instead of the morning (and for some it works better in the morning) so she could maybe try switching that around. Definitely ask the doctor first though so you can make sure you do that safely.
As for the cost, mine was covered by my insurance, but there may be some programs out there that can help if you do some research. Your doctor might have some info on that or maybe some different medications she could try. I wish I could be more help.
Angel I’m sorry to hear about your mom. I, too, just recently started on Letrozole. I am 60 and experiencing everything she is experiencing. Fortunately, I’ve met my insurance deductible this year, so insurance is paying for my Letrozole. I have to start another drug next month just in case there are some floaters (cancer cells) in my body via my lymph nodes (I had two removed during my lumpectomy). If they are outrageously priced when I start the new year (and deductible), I will probably stop taking them. I do want to see if they come in generic form. Is your mom in the United States? If so, shouldn’t Medicare be paying for this? I know this is hard to hear, but your mom is 83 with stage 4 metastasized cancer taking a 21-day $5k medication that is diminishing her quality of life. I was told Letrozole is an anti-estrogen medication. It is supposed to deplete the estrogen from my body (my tumor was Estrogen Positive). How is this drug helping your mother? My mom died of pancreatic cancer when I was 23 years old. She had an unsuccessful surgery and chemotherapy. She was never the same after the surgery. She was physically ill, in horrendous pain while being given shots of morphine, and bedridden. All my siblings agree that if we would have known then what we know now about pancreatic cancer (death sentence), we would have asked our mother to not have had surgery or anything else. To just have lived a few coherent months. If it were my mom, or even me eventually, I would ask her to stop taking it. God bless you and your mom. You are both in my prayers.
I've stopped my aromatase inhibitor for breast cancer I feel normal again 🙂
It’s definitely a great feeling :)
what app are you using for blood work
My hospital uses MyChart for appointments/test results etc so it was that app