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unending chemo

Jhshl512 profile image
53 Replies

Hi everyone. I’m currently on Enhertu and have been since last April. Right now, I only have Mets to my bones. Everyone is always asking me when I will finish chemo. I have asked my oncologist this as well. Her response was “when it no longer works “ I guess I just assumed that at some point I could take a nice long break from chemo. However, that doesn’t seem to be the case. Is anyone else being told this? So my impression is, once I have progression I would just move on to a different IV chemo. I guess I’m just tired of not feeling like my old self. Thanks for listening. Praying that everyone has a healthy 2024.

Lori

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Figletf profile image
Figletf

I too am on Enhertu and having very good results.No progression and much better blood results.I keep praying to hear the words "in recession".I am grateful to be "stable"but as you say,I would love to return to my normal self.

Jhshl512 profile image
Jhshl512 in reply to Figletf

Yes, I totally agree.

purplelikep profile image
purplelikep

Yes, the thinking is that you will forever be on some kind of treatment. But it may not always be traditional chemo. There could be a targeted treatment or something else. Some have more side effects than others. Sometimes people move on to a next treatment not because of progression but because the side effects could become too much.

Kerryd22 profile image
Kerryd22

My brother tells me a lot of his friends think I’m cured because I’m still here. There’s very little understanding in the community about what it means to have metastatic cancer.

Purplelikep is right. We’re on one form of treatment or another until nothing is helping and at that point we can stop and put our affairs in order.

Hopefully that’s a long way off but no one knows what each treatment can offer us and there’s more becoming available each year. My oncologist was at pains to tell me last month that I have many options left plus trials and new combo treatments.

The circle of life -we’re born, we live and then we die. The trick is to get as many years as possible in the middle part.

SoulJourney profile image
SoulJourney

Hi Lori,

I am glad for your stability!! I am also thinking that Enhertu is your first IV treatment.

So I have been told all along for the past 10 years that any treatment hormone, chemotherapy whatever is used until it no longer works. We can’t cut a treatment short and we have to milk it for all it’s worth.

Some of my earliest treatments were cut short I think but I didn’t know better. It wasn’t until going through Anne’s book and talking with “Lynnfish” did I learn to hang on to a treatment and question changing so fast. Maybe there were more reasons that I didn’t know to ask about. I too love my oncologist and I know without a doubt she fights for me so there must have been reasons!

Fast forward to today and Enhertu is my 3rd line of IV chemo. I have lost count of the total lines of treatment I have had but have been told we have exhausted hormone therapy. Sorry I am babbling a little…

The moral of this is, it is done this way because we are palliative. Palliative exhausts all options and moves on. Curative has a beginning and an end.

When someone asks me when I am done, I usually reply “I’m a lifer, there is no done.” My family and friends are so supportive and I can help them understand what it means to be Metastatic at that point.

Sometimes I get back from insensitive strangers everyone is done at some point. Which ticks me off to my core, like they know! So I look at them flatly and say “oh you mean when I’m dead!” That shuts them up. Thank goodness that is not the majority. I no longer entertain people with zero empathy or compassion.

Whatever we go through in life (chemo included), we are never the same person we were yesterday, a week ago, a year ago or longer. Our experience gives us the compassion to assist others on their journey and the wisdom to shut down a futile conversation and walk away!

Hugs, love and prayers for strength and wisdom 💜

Tammie

wendle3007 profile image
wendle3007 in reply to SoulJourney

Tammie I so get where you are coming from with other people's opinion on treatment. I guess that almost everyone knows someone who has had breast cancer, but not many know someone with MBC and so they just don't get that we will never be over it. Most of my close family and friends understand and only ask about scan results and how I am coping with side effects. Others do know but are in denial about it and I get that they have their own problems so I don't push it with them. The ones that bother me are the not-so-close friends who keep forgetting whatever I tell them about my treatment and try to be "supportive" by saying things like "I can't believe you are still having to go through this". I suppose it also doesn't help that I look healthy enough most of the time - it's only when I get very stiff and tired that anyone notices I'm not OK.

Best wishes to you

Gingerann1 profile image
Gingerann1 in reply to wendle3007

The response I get the most when I share is “well any of us could be hit by a bus tomorrow so…”. This makes them deal and feel better. True enough but we have to live with the knowledge that we pretty much know what will take us in the end and have to fight for more time each day. Other than us being able to share with each other it really is a lonely place to be. That’s why I am so thankful for this forum. Thanks to all of you for sharing your journey and being there for others. It is priceless.❤️

Jhshl512 profile image
Jhshl512 in reply to SoulJourney

Thank you for your informative reply. I guess I was just questioning everything because of my visit with my neurosurgeon yesterday. My tumors are in my spine and he operated on me last year. So he asked me twice “When do you stop the chemo?” The first time I politely explained, the second time I unfortunately replied “When I’m dead”. I know he was shocked by my answer but it just came out! I felt so bad that I had said that. I guess I just have to realize even some doctors don’t understand. Wishing you all the best along with everyone else. This journey can be so hard and because of that I appreciate all of you on this forum.

Lori

Best521 profile image
Best521 in reply to Jhshl512

Great answer!!! Yes even doctors don’t understand. Especially doctors in other disciplines. My own primary care physician didn’t get it. A close friend died from Breast Cancer eight years ago after struggling with MBC for 2 1/2 years. At the start of my 3rd year I have already been on four medications that were not available to her or not in existence back then. At the time of her diagnosis survival was 18 months to 2 years. Oncologists are already saying in presentations median survival is 5 years. Even though it is not reflected in official statistics yet, Oncologists are seeing 5 years in their clinics. 11% of MBC patients are living longer than ten years. Anecdotal stories of Stage 4 MBC patients going into remission are throughout the reputable media. The boundaries of this disease are being pushed everyday. With the pandemic behind us and the advent of Artificial Intelligence development of new drugs to treat and cure, yes cure, Stage 4 Metastatic Breast Cancer will come fast and furiously. Immunotherapies hold promise, Keytruda has put Stage 4 Cancer patients into remission, Keytruda is in trials for HR+ MBC patients now, mRNA vaccines for MBC patients are in or going into trial, Car T-Cell trials on solid breast cancer tumors are starting, over 100 Anti-body Drug Conjugates are in development, Check point inhibitors targeting other proteins are in development. The list goes on and on.

We may never have our former lives back, but there is much to be hopeful about. MBC patients will continue to live longer healthier lives than those before them while changing people’s perceptions of this disease.

Jhshl512 profile image
Jhshl512 in reply to Best521

Thank you for your knowledge and hope for the future. I needed to hear that!!

Conams profile image
Conams in reply to SoulJourney

Regarding the comment about "everyone in done at some point" I get "it could happen to anyone, I could die tomorrow by getting hit by a bus" this does annoy me, or am I being too sensitive, I personally see it a bit different than that, but don't know how to respond to it. 💜

Aprilfoolz1 profile image
Aprilfoolz1 in reply to Conams

Conams, I agree with you and do not think you are too sensitive. That kind of statement really pisses me off ! Metastatic cancer is not the same as a random bus running us over and killing us. We know we have a terminal disease and are doing our best to live with it . It is not easy, many treatments have terrible side effects yet we continue on . Ugh .

wendle3007 profile image
wendle3007

Basically secondary cancer, wherever affected, is not curable, only controllable. Therefore with each line of treatment they keep you on it until either it stops working or you cannot tolerate the side effects. And then they try something new. Best wishes that your current treatment is suiting you!

Jhshl512 profile image
Jhshl512 in reply to wendle3007

Thank you!!

Andersl profile image
Andersl

Hi

Yes unfortunately it is usually the case with metastatic disease that we remain on treatment for the rest of our life.

I, too, was disappointed (to say the least) when first told. However, I now consider it similar to those who have other medical conditions such as chronic arthritis, Motor Neurone Disease etc etc.

It's a maintenance treatment which helps to keep the cancer from coming back though inevitably it will.

Perhaps try to accept it as a good thing :)

L x

Figletf profile image
Figletf

Since the forum seems to agree that there is no remission with MBC I will choose to continue to believe that there is NOTHING impossible with our God 💜

Kerryd22 profile image
Kerryd22 in reply to Figletf

I agree with you about God’s power but as for remission at stage four while I’ve never experienced it, a woman on another site went to the brink of death and then went into the Herceptin trial. That trial, along with another that was too toxic to be approved, put her into remission for nine years. She’s started on her 23rd year of stage four cancer. She passed the 22 year mark in December. She’s 73 now and starting to suffer with various problems aside from cancer but she’s had a very good run. She’s on Xeloda now. Unfortunately right now that kind of success is for the few not the many but the fact that she’s experienced it and PJBinMI is close to 20 years and several people are still on their first line of treatment after ten years and even 13 years says that nothing is impossible. Whether it’s probable for us individually is another matter but without hope we have nothing. ‘Rejoice in the hope. Endure under tribulation. Persevere in prayer.’ Romans 12:12

Figletf profile image
Figletf in reply to Kerryd22

Amen❤️

Jhshl512 profile image
Jhshl512 in reply to Figletf

Amen to that!! I was diagnosed with mbc in 2013. I know it’s only by the grace of God that I am still here🙏🏻

fancydog profile image
fancydog in reply to Jhshl512

I had an unplanned treatment break for 2 months last Summer d/t Vertigo and associated nausea and vomiting so bad I became dehydrated and had to be hospitalized twice. My Onc said I could take a few months off treatment if I wanted, but I decided 2 months was enough and scans remain NEAD!

viennagirl profile image
viennagirl in reply to Figletf

I agree with you. I believe that mbc is curable. It is like a locked door. Someone has to come with the key. That will happen. I seemed to become NED after getting my first Covid vaccine Pfizer. I don't know if vaccines are the key but I hope so. The technology is there to find a cure. Cheers Marlene

Figletf profile image
Figletf in reply to viennagirl

👍❤️I have had all the vaccines and the boosters.We just never know.Happy you were able to achieve NED And yes,I have two nephews who are cancer researchers as well as oncologists (whose mother,my sister died of BC at 43.) They tell me to never give up HOPE for a cure🤗

Jhshl512 profile image
Jhshl512 in reply to Figletf

I will never give up HOPE!

Figletf profile image
Figletf in reply to Jhshl512

Me either❤️👍

viennagirl profile image
viennagirl in reply to Figletf

I love your optimism. We will get better. There are so many reasons to be hopeful. I am currently NED and hope to be able to stay that way. I am on Ibrance and Letrozole with very little side effects. I do my own version of research as well as listen to my doctors. I think we can help ourselves heal. I believe the body wants us to heal and will help us if we help ourselves. I am fasting a little bit and I try to drink lots of water. I have cured my UTIs with vinegar and fresh lemon juice. My thank you to the lady who gave us that recipe on this site recently. After years of suffering something so simple is helping me.

So the cure for mbc is also probably simple. I am very aware that is not easy to change ones cultural practices especially with regard to diet. But I am trying. I fall off the wagon periodically but I always get back on. I think that is why I am doing well. But I want to find the solution to thinning hair.....heh.....heh.... So far I haven't found anything that works. I have been off dairy for quite a long time but now plan to add yogurt to my diet. I have a friend that said eating yogurt really helped her grow hair. Has anyone heard of this? I have heard that dairy is bad. So I am very confused about this. Hugs M.

Figletf profile image
Figletf in reply to viennagirl

I agree,I believe our bodies do everything they can to keep us well,even when diagnosed with MBC..My son and his wife do intermittent fasting and it does seem to help.She overcame MS with prayer and fasting.

I drink lots of water and take many supplements even though most doctors say they are a waste of money.

My hair has fallen out again with Enhertu as it did with Taxol in 2018

but I still use Shapiro products for hair loss(hoping it will help it to grow back)!

So happy you are NED and also have solved UTI probs.

I had never had any UTI's in my life until having one recently.No idea what caused it and didn't even know I had it until my Cat scan told my Oncologist.😲.Always something 👍

viennagirl profile image
viennagirl in reply to Figletf

Wow! Over coming MS with fasting is absolutely amazing. Thank you for sharing that with me. My husband recently fasted for 72 hours - he is 82 years old and he is now completely out of pain and his feet and legs are not swollen and his vision has improved. So there is really something to fasting. I hope that scientists do more research on fasting to see if it can cured mbc. Hugs Marlene

Figletf profile image
Figletf in reply to viennagirl

Yay!!

viennagirl profile image
viennagirl in reply to Figletf

Thank god there are some doctors who believe that a cure for mbc is possible. I will never give up. Hugs Marlene

RLN-overcomer profile image
RLN-overcomer in reply to Figletf

Amen😇 I pray we, and our loved ones will have a Healthy, & Happy 2024 New Year😇🎈🙏🚴🎈🎵

Watjo profile image
Watjo

Hi Lori, I'm on letrozole (pill) and Inrance (capsule). My MBC is in my lungs and bones. My oncologist says to think of MBC as a chronic condition like diabetes . The ongoing treatment is actually helping! I know it's difficult when our bodies are changing so quickly to think that way. With my meds she says we'll stay this course until my meds stop working.

Lori, if you are in the USA you can go on Social Security Disability. This will get you the max amount of SS as if you worked to your max. Also, check out Medicare.

Hope this helps. You got this girl!!

SoulJourney profile image
SoulJourney

To Lori and everyone else,

I am going to lead with great answer to the doctor! He should have been more prepared, he should have understood your situation!

There are different stages of diagnosis even for MBC and also depending on where it travels, AND there is so much HOPE!! Only God knows when our walk is done!

Case in point….ME.

2014 Valentine’s Day I had such a pain in my breast. My family doctor saw me on the Monday and she said I told you “you have have fibrous beasts, it will happen sometimes…you’re so young I wouldn’t worry about breast cancer” We talked more and I insisted on a mammogram. My doctor cried as she gave me the news. She is a good doctor, I have been with her for years, she delivered all my kids.

I did the surgery and reconstruction in a timely matter and I do believe my care was inspired! There are miracles every day if we look for them! It was fast and fantastic care. Fast forward 2 months and they are prepping for chemo, baseline bloodwork delivers shocking news and a bone scan and others not previously done….I was metastatic with numerous lesions on my spine and a spot on my liver. I was given 2 years. They urgently - days - prepped me for spinal surgery. My T12 was for all intent tumour only very little bone remaining.

I went through the surgery successfully and recall so clearly morning rounds while I appeared asleep one intern made the comment that he didn’t understand why they did the surgery as I was practically dead anyway. I was devastated, I just continued to pretend to be asleep. It was however a catalyst and turning point. I was not going to be that statistic!!

Here I am at 10 years, God and I have had many conversations, and needless to say I also share I am 8 years on God time!

Yes we are in this till we are dead, those who go into remission by the grace of God will never be discharged. We will be closely monitored until we die in case of reoccurrence. MBC medically has no cure but they are working on it. God and I talk about that often these days because the journey is much harder once you enter chemotherapy. I too get weary.

Opinion: I don’t like fight to me it implies choice, we really didn’t choose this fight. We just have to face it. I like journey with God as my guide. He has gotten me this far and He will take me the rest of the way. I am here because my journey is not over! Statistically I should be dead, divinely not yet!

Lori, chemotherapy is weary and I get it, mourn your lost life occasionally… then know the new you is wiser, more compassionate, AND a force to be reckoned with!!!

We are the voice that changes the way people view MBC!!! Our voices are just starting to change that because they are stronger and they are getting heard longer.

There are so many strong people who have done so much good. I envision myself picking up Anne’s torch in some small way and changing the narrative around me!

May you have the strength and courage to find your torch. May you have the peace and grace to share it eloquently!

Hugs

Tammie

Jhshl512 profile image
Jhshl512 in reply to SoulJourney

Wow what a story! Thank you for sharing. I too believe by God’s amazing grace that I am still here. It’s all the side effects that get me depressed. In this day and age you would think they would make a med that didn’t have such awful side effects. Just saying.

RLN-overcomer profile image
RLN-overcomer in reply to Jhshl512

Greetings: 😇 Sister /Warrior/Thriver/Over-comer I pray in our near future there will be better breast cancer treatments that will end breast cancer. Some of the treatments available do have some horrible side effects, but remember years ago the only treatment available was I.V. Chemotherapy, and hormone removing drugs . I believe the prayers of my loved ones were heard by a healing GOD , and were the catalyst in keeping me alive here on Earth😇. By the grace of GOD I am still here . The expert Oncologist at the time in 2007 said I wouldn't live to see 2008. He thought he could extend my life with aggressive chemotherapy, and radiation for a few months😏🙄. Well I am still here typing on this keyboard talking to you almost 16 years cancer free, and taking no pharmaceutical drugs. Yesss I do take some custom cancer fighting , and other healthy vitamins,/supplements from GOD's green earth. I praise our Creator every day😇 .I do pray we, and our loved ones will have a Healthy, & Happy 2024 New Year

michelangelina profile image
michelangelina in reply to SoulJourney

Thank you for telling your story. Very inspiring! I am coming up on 6 years with MBC. One silver lining of having this disease is that we know better than most that every breath we take is a gift, and that the only way forward is to rely completely on God!

RLN-overcomer profile image
RLN-overcomer in reply to michelangelina

Amen my Sister I pray you, and your loved one will have a Healthy, & Happy 2024 New Year😇🙏😇

michelangelina profile image
michelangelina in reply to RLN-overcomer

Thank you! I pray the same for you!

SoulJourney profile image
SoulJourney

Yes, it can feel like the treatment is worse than the cancer some days.

This too shall pass. I had a short stint of Vinorelbine between AC and Enhertu. It was my break! Very few side effects for me and I felt “normal” again. I just can’t wish away any treatment, side effects and all; I am running out of options cause my liver is paying the price - the tumours cleared up years ago but they are saying fatty liver and toxicity overload now.

Hang in there

Tammie

Jhshl512 profile image
Jhshl512 in reply to SoulJourney

So sorry to hear that Tammie. Keep your chin up and pray to God that they come up with a solution to our misery. I will keep you in my prayers. 🙏🏻

viennagirl profile image
viennagirl in reply to SoulJourney

Hi Soul Journey.

I watch and listen to the advice of healers on line - ie. doctors and naturopaths on YouTube who believe that almost everything is curable or changeable. I have taken advise from these healers an feel I am benefitting. The diets I have faith in are related to the benefits of fasting. One of my favourite on-line doctors said that fasting can cure a fatty liver. My favourite healers are Dr. Mindy Pelz and Chiropractic healer Dr. Sten Ekberg. I know some people see these healers as fakers but I don't believe they are. Some of them are quite well respected healers. I believe it doesn't hurt to listen to them and to see if they sound credible to you and your circumstances. Fasting is not for the faint of heart. But I do it periodically because it makes sense to me that many of our cancers have emerged in the last 100 or so years when food was plentiful and when we began modifying it. I think we eat too much and overload our body. My mother who lived a healthy life until she died at 94 believed in the life force in food. One time I put a teaspoon of unpasterized honey into my very hot cup of tea and she said "you just killed the life force in the honey". I was about 30 years old when she told me that bit of ancient knowledge. I am now 81 years old and just the other day a naturopath on YouTube said we kill the life force in honey when we put it into a hot liquid. My mom with her grade three education knew that. So what other wonderful old ways to health have we lost. I know my Oncologist would laugh at me if I suggested that honey had a life force. So sometimes we have to make up our own minds about what is hokus pokus and what is real. My TV is absolutely loaded with treatments for skin conditions etc. but I wouldn't be surprised if there are old remedies and old knowledge that would be less expensive and easy to acquire to help with just those conditions. I am keeping my mind open. I follow my Oncolgists advice but I also do other things that I believe are keeping me well. The Ibrance and Letrozole make sense to me but so do other things. So I try to embrace as many things as I can fit into my daily schedule. By the way, my mother died of osteoporosis. Which us unfortunate because she was always active physically. But she never ate any dairy or cheese and didn't drink milk as a child. So maybe she didn't know everything about health but she was very respectful of nature in many other ways. Her sister who drank copious amounts of milk daily lived to 97 and never lost an inch to osteoporosis. She died because she got lonely and just wanted to be somewhere else. So it is really important to not rule out advice from these so called online "fakers". So I believe after listening to many of them you can make up your own mind as to what would work for your body. Some naturopaths suggest giving up dairy but their advice might be okay for some people but not for people who have not other way of getting calcium and minerals into their bones. So it is wise to listen to everyone and choose things that make sense after hearing everyone says their piece. You know your own body and if you listen to it you will find a path to healing. Happy New Year! Cheers Marlene

Best521 profile image
Best521 in reply to viennagirl

Hi Viennagirl, When I was first diagnosed with MBC I was offered a trial researching intermittent fasting combined with exercise. Unfortunately I was not accepted because I was already walking 30 to 45 minutes on hills each day. There are trials underway for fasting, diet and exercise at several top cancer centers, so you are definitely going in the same direction as the cancer researchers.

Along with everyone else I will continue to live with hope given all the tools available to treat this disease.

viennagirl profile image
viennagirl in reply to Best521

Thank you for letting me know that fasting is being investigated by researchers as a way to help people heal especially us ladies with mbc. My husband who is 82 years old recently fasted for 72 hours on only two cups of coffee and plain drinking water each day. He had some amazing things happen. His vision improved, his feet which have been numb for many years now have feeling so he is walking much better - his balance is improving and most amazing of all he doesn't have any pain. He was plagued with pain when he tried to sleep at night. He would often get up and sit in his lounger until the morning because he couldn't lie down. All that pain is completely gone. He sleeps for four and five undisturbed hours each night and of course is in much better spirits. He has no pain at all and that just amazes me. It is not something we can explain. My husband thinks that fasting probably reduces inflammation. Initially my stubborn husband only agreed to fast because he has a muscle wasting disease. The neurologist and his geriatric doctor say his condition is not related to aging. Doctors tell him that he has a disease but they have not been able to identify it. The fasting has not helped with that condition - yet. But is only about six weeks since his fast. He is having a muscle biopsy in late January and that might help identify the muscle loss disease but he still wants to use fasting to see if it can play a role in healing the muscle disorder. So both of us have decided to do another 73 hour fast sometime in February. I fast on my 7 day rest period. I also did the 72 hour fast and the only thing I noticed was that the numbness in my feet are very much improved. I hope the researchers find that fasting is a tool for healing - especially for women with breast cancer that has metastisized. Right now we have an opportunity to experiment ourselves and see what fasting can do to help us heal. I still have lots of hope and believe in a cure. By way, congratulations on all that walking. I am also trying to do more walking. I am proud of you!! Hugs Marlene

Ntash01 profile image
Ntash01 in reply to viennagirl

Marlene & Tammie

Thanks so much for this, I’m putting my plan together and will now include your experiences to support me regain my control.

I've been in a hole since end October and I am now getting my shovel to try dig me out of it. I’m usually strong mentally and physically but no more! Just dark thoughts and pity… unhelpful tbh!

But hey 2024….. I’m coming back baby 😘

RLN-overcomer profile image
RLN-overcomer in reply to viennagirl

I agree 😇, every one is wonderfully, and uniquely made. Everyone was not meant to consume all foods, and beverages . I eat by a book Called Blood Type/ Body Type Diet by Joseph Christiano. My specific blood type should not eat 95% of dairy, but I must take calcium supplement daily to combat any Osteoporosis.😇 I pray you, and your loved ones will have a Healthy & Happy 2024 New Year😇🙏

Hopeful4Cure profile image
Hopeful4Cure in reply to SoulJourney

I understand where we were, where we are and where we will be. Will is the key word to live and it will be the power and the glory of my conversations too. Each and every one of us have our own special relationship with GOD and Jesus. I pray to all the Angels and Saints too. My relatives and ancestors that have passed prior to me. I am not ready to give up. Tears flow often when people are mean and have no right working in the healthcare industry, let alone oncology. Unfortunately I too have had a relative, say, "we are all going to die," and I say, but not a normal death of old age. My step father is 99. He tells me he feels like he is just existing. I just want to live longer. There are so many things that I have not done yet and I am only 58. I wish the people that approve disability and insurance workers would have a walk in our shoes, take the pills we take, have a round or two of chemo and for dessert, 20 days in a row of radiation. Feel the pain, depression, anxiety and sleepless nights. Our bodies are like cookies that just crumble away. Feel what it is like to wait for the results of any test or scan. Tests, upon tests and biopsies. Some have hip replacements, steel placed in their thighs because their femurs have been destroyed and cement placed in their spine and many other replacements. I do not wish this horrible disease for anyone, but I am tired of people telling me they understand, but have never had it, let alone MBC. Thank you for all writing your thoughts too. We all need to know that we are truly not alone on this journey. On the menu of life, I would like to order a la carte and I will take a cure and an extra side of compassion please. Prayers and blessings.

SoulJourney profile image
SoulJourney

thanks for sharing! We all research for what will help us the most. I too research both drugs and complimentary therapies. My oncologist will tell me (often😂) that’s hokum! She will also say go ahead if you want, or no that directly interferes with treatment.

My newest is that I am looking into gut biome and following the drug AOH1996.

Diverse I know, it helps me feel I have a little say in what happens to me!

Best wishes,

Tammie

awesome4ever profile image
awesome4ever

Hi Lori. Your question is quite an emotional one for all of us and sadly as most others have mentioned we will need treatment for life and move from one to the next option when progression happens. MBC is treatable but not curable. I was diagnosed De novo in May 2018 and successfully took Ibrance/Femera for 5 years. Although I was more fatigued I really had no side effects. I'm on my 2nd line now and doing well.....but I often wonder what my old normal self felt like. That point I will never know again and yes it can be depressing to think that way. However I'm still alive and enjoying my time with my hubby and several close friends. I choose to not tell my family my diagnosis (they live far away so it is easy to hide) and similarly only a few select friends know. It's easier for me that way as I would hate the pity looks that I would get. My friends that I have told treat me as normal and I update them on scans etc but otherwise I don't burden them with my challenges of living with this disease. That works best for me. Treatments for metastatic cancers are evolving all the time. Do I think a cure will be found in my lifetime....no sadly I do not. Breast cancer and it's estrogenic qualities makes it so difficult to target as a whole. That's why all the amazing treatments within the last 10 + years are always targeting a specific mutation or gene but never the whole disease so to speak. I'm not religious so thinking God will take care of me is not in my thoughts.

Remember we are always in control of our decisions .....if you want to choose to give yourself a break then you can but with this you have to be mentally prepared for the consequences that progression may happen. It's an unknown but for some it is worth it.

Even with all those realistic thoughts I continue to be happy that I am still alive and enjoying myself. Staying busy is important I think but also give yourself the freedom to rest when you need to, cry if it makes you feel better and be thankful for everyday. I have a message to myself posted on my computer so I look at it daily.

Not today cancer. Go to the back of the line.”

Aprilfoolz1 profile image
Aprilfoolz1 in reply to awesome4ever

awesome4ever, I chose to not share my dx with many people, too. A few close friends know and since I've been stable , only ask about scans . My kids know and my immediate family (sister and elderly parents who all live in a different state). Once I retire I will probably share more freely. When I was dx stage 1 in 2008 I was caught off guard by the bizarre comments well meaning people would say. I decided in 2019 I would keep it more private so people don't treat me any differently and I'm in control of that aspect . So far so good ;)

Colacancer profile image
Colacancer

I feel you. It's kind of a desperate feeling . I feel so awful from my meds right now and I'm single parent with special needs child. And I just have zero energy zero quality of life . I Thank God I live with my elderly folks, they Truly save me with my son who has endless health issues. I'm on versenio right now and this is until its stops working. My bowel is in hell. I just feel lifeless. It breaks my spirit.

Kerryd22 profile image
Kerryd22 in reply to Colacancer

I’m really sorry to hear that you’re not feeling well on your treatment. Life can be very hard at the best of times and life with stage four cancer can’t ever be described as ‘the best of times’.

It’s a blessing that you have parents who can help you and your son. My parents have both died since I was diagnosed and I don’t have children. I’m doing okay but I do take a daily Amitriptyline and that does help. I have very mild neuropathy and it does double duty as pain relief for the neuropathy and as an anti-anxiety drug.

Feeling despair is normal for those of us who have MBC but it does impact our life and those around us too. Maybe your doctor can assist with this.

I hope you can get some relief from your side effects. Quality of life is important.

All the best

Kerry

Lightwinds profile image
Lightwinds

Hi, just outta the Hospital after having two liters of fluid removed from my left lung. Onto another Therapy. Enhertu ! Is is rough because I am coming off Xeloda fairly easy but diarrhea was a huge problem for me. Did you lose your hair ?

Jhshl512 profile image
Jhshl512 in reply to Lightwinds

Hi, I have been on Enhertu since April. I had beautiful thick hair when I started. It is now short, curly and gray. (I’m 65). My Onc tells me it will all eventually fall out. But hey that’s what they make hats for! My first treatment was a piece of cake. No side effects, however the second one was a little rough. Mostly nausea and vomiting. Over time I was able to control all of that with meds. Fast forward to today. No nausea or diarrhea. My only side effect is being very tired. I go to bed at 8pm and get up about 6am. I also have to lay down in the afternoon. I’m hoping that things go well for you. I am scheduled for a pet scan on the 30th. Praying that I will be stable.

The Best

Lori

Joedev profile image
Joedev

Hello Lori,

Sharing is my wife's journey since she was diagnosed MBC de novo in 2015.

After the six rounds of Chemo & Target drugs herceptin & perjeta she came out NED. Thereafter was treated for 5 years with the Target drugs till 2020 all the time she stayed disease free.

Now since last 4 years she has been taken of the Target drugs both herceptin & perjeta. No IV treatment since then. Only the oral pill Anastrozole 1mg continues.

She continues to be in complete remission, the new age medicines are doing quite well giving hope to many. It's been nine years of being truly blessed and living life normally all the time , other than the few anxious days.

It's not all totally bleak days ahead, there will be many bright times .

Best wishes for a disease free and drug free days ahead.

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