I'm a Survivor!

Hi there,I'm a stage 4 breast cancer survivor still in treatment.i was diagnosed 3 years ago and am stable!it's nice to be here!

[Hidden]

I was first diagnosed back in Oct. Of 2020 after a routine CT scan for my stomache!of all the irony,yep,they found I had a stomach ulcer,that's when they found the mass in my right breast.so,from there I had a ultrasound and then biopsy.then a week later I got the "Call".i had cancer.the next week after that I went to see my surgeon she did my mastectomy of my right breast and she also took some lymph nodes as well.and with that time being Covidnation,i went home the same day!with two drains also mind you!so,after that time to heal and rest with all my home nurses,I started my PT prep for radiation the week after i was done with PT,I had my follow-up with my surgeon to get my drains out.then I came back to see my radiation onocologist for my prep for my radiation.i had 40 rounds of it and while i was finishing up my second session is when she pulled me aside to let me know that it went into my bones near my spine.well,I wigged on that news,let me tell you!that's why i had to have 40 rounds.anyway,after i was finally done,I started my hormonal therapy.i take Ibrance which my oncologist dropped dosage down to 100mg.,and at that time i was on meds that started with Astralole?anyways,i had too many side effects.now i'm on letrezole.then last Feb.,i was diagnosed with lymphadema in my right arm.so,here we go again with almost 9 months of PT,being wrapped and bandaged,and let me just say,i hated that part!i was never so glad when i recieved my sleeve and gauntlets!but,like i said,that was my journey so far.but i surely did learn alot,and been through alot as well.i get bloodwork every month,and see my onocoligist every 2 months.and i get my petscans every 6 months.so,this is my BC journey as of now.sending lots of hugs to everyone here!❤️☃️

[Sharon0122 in reply to Hidden]

welcome! I was diagnosed in June of 2021. I’m still here and everyday this side of the dirt is good! Best to you Hugs! Now if only I could sleep at night!!!!

[Gmaoftriplets in reply to Hidden]

Welcome! I was diagnosed stage 4 at Initial diagnosis in 2017 and have been on Ibrance and letrozole, stable until this past September when the PET scan showed the cancer had progressed into a lymph node from the breast tumor. Scheduled for a double mastectomy on January 5. Very nervous about the surgery, since I will be coming home the same day!!

Take care

[Kcap430 in reply to Gmaoftriplets]

Wishing you a safe and easy recovery. Sending you home the same day is crazy, I can understand your uneasiness about this. Nothing but good thoughts and positive vibes headed your way!

[Seadrift in reply to Gmaoftriplets]

Hi Gma,

Try not to worry too much about going home the same day. I also had single mastectomy and came home the same day (actually night by the time I got to go home.) Make sure you have someone with you at home for at least the first day or two. The drains were the worst part for me, and the first few nights, trying to sleep. You won't be able to lift your arm(s) for a bit. They will give you arm exercises to do, or you can look up these exercises online. It is important to try to do them as soon as you feel comfortable starting the basic ones. So you can get back your range of motion. Good luck!

[bikebabe]

Hello to you, and well done on getting to where you are now and I hope that things stay good for you for a long while yet - even forever when they find an amazing drug to outwit breast cancer completely/forever. Take joy in every moment you have as a way of honouring the women and men who never had the treatments we now have.

[Andersl]

Hi Good to hear. I was stage 4 at diagnosis. Almost 5 years out and still here after continuous chemo and 3 sessions of targeted radiotherapy to my brain. I'm HER2 positive, in the UK, and currently on Enhertu.

I've lived to see my sons first child and will meet my first granddaughter in 2024. I've also watched my other two grandsons grow and develop over these years.

I'm grateful for what I have and blessed to have been able to spend more time with family.

all the best

Lx

[Onedayatatime60 in reply to Andersl]

Hello. I am also her2 positive. Is Enhertu the second line after Herceptin? I was told there's lots of options but didn't ask specifics. I remain on Herceptin and Prejeta currently.

[Andersl in reply to Onedayatatime60]

The US and the UK have different treatment paths. I had Kadcyla before Enhurtu. The Kadcyla gave me about 15 months before relapse.

L x

[Onedayatatime60 in reply to Andersl]

I am from Canada- not sure what we do here

[MettavivorDS]

Welcome to the MBC forum Survivor63! I was diagnosed with stage 1 bc in 2013. The treatment I was taking for some other health issues had interaction with the recommended endocrine therapies available at the time. I ended up not taking tamoxifen or an aromatase inhibitor after completing a lumpectomy and radiation treatment . My oncotype DX score (a test for how likely the cancer is to recur) was only 6 out of 100 and my oncologist told me I could sleep at night, if I didn’t do it. However, I had a recurrence with a small metastatic spot on my femur bone in 2016. At this point, the other health issue had resolved and I was able take Letrozole for 6 years. It worked well until it stopped working and I was NEAD for 5 of those years. In 2022, I had another recurrence. This time it was a small metastatic spot on my iliac bone. I was switched to fulvestrant injections. The fulvestrant has been working. The spot is still showing up on the scans, but hasn’t grown or spread. I tried taking ribociclib when I first changed treatments. The side effects were so horrible that I only did one round. I’ve always done lots of other integrative treatments like TCM, acupuncture, tong ren and integrative manual PT. Every day, I do my best to make my body hostile to cancer growth. It’s been 7 1/2 years and counting as a mettavivor. Very few people truly understand the complexity of living with metastatic disease and I am grateful for this group of awesome thrivers! May you get many years out of Letrozole. It has a lot of side effects, but works really well, even by itself.

[fancydog in reply to MettavivorDS]

Welcome to this very supportive group of ladies. On January 15 I will have been living 10 yrs with MBC, early on things were a bit rough but now I have been on the same treatment for 9 yrs. 👍❤️

[Figletf]

Great News! I too am a stage 4 survivor still in treatment.But still here after 7 yrs.Yes,it is good to be looking at 2024😃🙏🙏🙏🙏🙏🙏🙏For both of us to continue staying at least stable while we ask God for complete remission ❤️

[Flowerfriend]

I was on Ibrance with letrozole for 2 years. After about 20 months, progression in my liver resumed but my only undesirable side effect was hair loss. So, in Nov 2022 I switched to Kisqali and fluvestrant and no slowing of progression in six months, however I developed bradycardia and had an episode of a terrible rash. Whether they were side effects of Kisqali I don't know but it is possible. Subsequently I had a pacemaker implant.Both treatment regimens treat estrogen positive MBC and apparently weren't effective because my MBC of 18 years mutated... A liver biopsy in May 2023 revealed my bc had mutated and was only 1% estrogen positive. I began Xeloda in May 2023, have had no side effects and the liver lesions are reduced in size, though CA 27-29 continues to rise and is now>2000.

So, here's my question. Why Kisqali, which costs $36,000 for a 28 day supply in the US? Why not Ibrance as first line, which costs $16,000 for the 28 day supply? I, fortunately pay for good private insurance in addition to Medicare, so my co-pay was only $80 for each 28 day supply.

I'm not convinced Kisqali is a better option and question whether ONCs are just responding to the sales pitch of the newer drug.

I hope your treatment is sucessful and provides for good quality of life in 2024.

Best wishes, Gwen aka flower friend

[Hidden in reply to Flowerfriend]

Hey there,I have not had more issues with Ibrance for 2years.my scans are alway's clear,and am just glad that I'm still stable.i know eventually that the Ibrance will stop working but know there are other meds that can take it's place.all we can do is take one day as it comes and be thankful and grateful we're still here.hugs!❤️❄️

[TammyCross in reply to Flowerfriend]

I had Ibrance (palbociclib) first. I thought that was pretty standard. Worked well for 2 years and side effects were not bad. Then Verzenio (abemaciclib) -- which usually has the worst side effects. Now I am going to start Kisqali (ribociclib). I had somewhat the same question but backwards. My oncologist chose Verzenio second. It was hard and didn't work well. My 2nd opinion doc at MSK would have done Kisqali and exemestane before Verzenio and anastrozole -- because of milder side effects and it typically works longer. We all differ, don't we? Kisqali has been shown to be the most effective of the cdk4/6 inhibitors. As for price, none of them has a generic and all are therefore unaffordable -- even Ibrance is almost $200,000/year. I have gotten all of then at no cost through the patient assistance programs of the pharmaceutical.

[Discocat in reply to TammyCross]

Welcome survivor63

I think different countries and even regions within the same country have various protocols as to which CDK inhibitor to start off with. Sometimes this is due to pharmaceutical contracts with health insurance and NHS differing or just due to distribution and doctor preference. Good news is that we have options and that they all (ibrance, Verzenio, Kisqali) have a similar effect as first line treatments for MBC.

Here in Cyprus I was also started on Kisqali and then switched to Ibrance after a few months as Kisqali affected my liver enzymes.

Wishing you a happy new year with continuing success on your treatments!

Zoe xx

[TammyCross in reply to Discocat]

I inferred that FlowerFriend is in the US because she gave prices in US dollars. In the US, it is standard of care to go through all three CDK4/6 inhibitors, although the order varies. I believe the NHS does not support going to another CDK4/6 if one fails. So not everybody has the options that you have in Cyprus and we have. The research indicates that they are not all equally effective, but then we also vary in our responses and side effects.

[Discocat in reply to TammyCross]

Sorry didn't mean to respond to your comment...not disputing your facts....was confused by sub strand while trying to message survivor63.

Happy new year!!

[viennagirl]

You are truly a survivor. You have been through a lot and must have a basically strong immune system or a strong will to survive. I also live in BC. And I believe the BC Cancer Agency is taking good care of me. I feel quite good and so I am very optimistic that I will have many more years of good health. Originally I was diagnosed with a large - very large lump - in my right breast. That was about 7 years ago which was removed surgically. My memory is not that great so I forget dates. Before the lump was removed I had 7 sessions of chemotherapy. That shrunk the lump significantly. But I was very sick with the chemotherapy so after surgery I refused chemo. That might have been a mistake on my part but maybe not. Chemotherapy can be too hard for some people. So I had three years of peaceful time thinking I was cured but then a very severe pain in my back sent me back to the doctors and scans and x-rays revealed that my cancer had spread to a many places in my body - including bones and in the bones in my head too. That terrified me. So almost immediagtely my oncologist put me on the hormone treatment of Ibrance and Letrozole. I started with 125 mgs but now I take 75 mgs.

So for the past couple of years I have not had any evidence of disease. I continue to feel good and don't have too many negative symptoms. I get aching in my hip lately but heard recently from one of the ladies on this site that joint pain can be associated with Ibrance. I plan to ask my doctor about this. I am 81 years old so very happy that I have made it this far. I am very grateful so I try to take good care of myself. I have been doing some fasting and I also spend a few hours a week on my Wave Mat. The crystals heat up and send some kind of healing to my body. I don't understand quite how it works but it seems to be helping me stay well. My diet varies but I eat almost everything. But lately try to limit some of the carbs from my diet. I love salads and veggies and eat small amounts of animal products. My doctors are pleased with my health so far. Hugs Marlene

[Hidden in reply to viennagirl]

Hey there I'm from the Atlantic northeast!have a lovely New Year!❣️❄️

[Misshelley]

I’m a Stage IV also and still here going on 9 years! Stay strong!

[michelangelina]

Welcome, and congratulations on your 3 years! I was diagnosed stage 4 in 2018, and have been stable since then. There is hope!

[CyndiA]

I was diagnosed in 2018 with stage 4 mets to bones. I did a double mastectomy which I highly recommend, and lymph node dissection. If you do a lumpectomy or a single mastectomy, you chance a recurrence in other breast and you're really never symmetrical again. And you can only do DIEP reconstruction once in your life time. I too have lymphedema in left arm. I got a lymphatic body pump from Tactical Medical, which has helped a lot.