Newbie and Scared

[Newbieandscared]

Just diagnosised and scared to death. I have adopted 6 children 10 years ago. They lost their dad 3 years ago I a car accident and now this. They are to young to loose me too. Since starting treatment I have developed blood clots in my lungs and afib. They have stopped my IBRANCE. I just did a clinical trial on a filter that removed circulation cancer cells. Very promising technology. It is call an ExThera filter that was featured on 60 minutes.

[Mardy72]

I am metastatic breast cancer to bone. I was diagnosed in 2019 and 2 months later in 2020 had spine surgery. Now have hardware in my back. I found a website for breast cancer. Food for breast cancer.com. you can find all kinds of information on there. Like what kind of food can help your treatment and about breast cancer. I'm on Ibrance and Letrozole. Oral chemo is not on that site yet. But has a lot of good information. Just keep thinking positive and keep moving forward.

[Discocat]

Hi Newbie

Sorry to hear of your worries. Yes this is some scary crap we have to deal with!!!

I'm 54 and 3 years 7 months since diagnosis. I had a bad reaction to my first treatment (kisqali) but was switched to Ibrance, which is currently still working for me. Is it possible that your oncologist could try you on one of the other CDK 4/6 inhibitors? There are 3...Ibrance, Kisqali and Verzenio. They all have slightly different side effects. In my case Kisqali affected my liver function...but Ibrance has been fine.

Also in general.. as you well know.... there are new treatments becoming available now. I hadn't heard of the filter type you have trialled. Thank you for pioneering that!!!

You are braver than you might realise...adopting 6 kids....being a single parent...trialling new treatments....

You are phenomenal!!!!

Hope you can find some help and support here on this group.

Wishing you all the best

Love ❤️ Zoe

XXX

[TammyCross]

As you can see from the previous replies, we all respond differently -- different side effects, different tolerance, different responses. It is one of the mysteries. That makes it hard for our doctors; it is almost hit and miss. But there are so many treatments now, there are many to try. I am going on a treatment that was approved just two years ago. Many of us here have been dealing with this diagnosis for years.

A couple of important things to know as a newbie: get genomic testing, a liquid biopsy because it can inform what treatments you are eligible for and are likely to work for you; don't be afraid to get a second opinion. It sounds like you are in good hands, but it doesn't hurt at a decision point to consult with another doctor.

Great that you were in a clinical trial, and if it worked, it sounds like it might have reduced the potential for additional spread. You are out of the trial now? How did they filter all your blood? Did it have to run through some external machine, or was it internal?

Here is some of what I learned about it:

The ExThera filter, specifically called the "Seraph 100 Microbind Affinity Blood Filter" or "ONCObind" filter, is a device designed to remove circulating tumor cells (CTCs) from the bloodstream, potentially offering a treatment option for metastatic breast cancer by hindering the spread of cancer cells throughout the body; it is currently under clinical investigation for its efficacy in treating various types of cancer, including breast cancer.

[bikebabe]

the filter thing sounds very hopeful - thank you for trialling it. Having a cancer diagnosis is really scary full stop and this will pass when you settle down into a long term treatment (after the clotting problem is resolved) and your kids will see you getting through it which will make them stronger. I look at the stats and think, why shouldn’t I be in the % that live a long life. Despite being on lifelong warfarin (after open heart surgery) I still have the usual metastatic meds ie palbociclib, Letrozole, denosumab so maybe some chemo treatments are more risky but others less so. In addition to warfarin I try to minimise the dvt clotting risk by doing daily walks and gentle exercise and wearing surgical stockings when I drive long distance. I have factor v Leiden and the onco team seem to work around that. If you’ve got the head for it, it’s worth becoming as knowledgable as you can about your treatment/condition and the meds you take (interactions) . it can be very empowering to have conversations with medics rather than being told what will happen, and secondly you will become a strong advocate for what’s right/wrong for you.

[visitingnurse]

God Bless you and your beautiful family! Be strong and positive! You are not alone! Praying for you! I have been fighting the good fight for over 34 years!..

[TwithBC]

…mama, praying for you; indeed too young to lose you. 8 years ago, my babies were 2 and 3…praying for your kiddos as pray for for my own children…praying for time for you as I prayed for myself — just time; God has given me 8 years so far on this prayer and I ask the same for you!!!! I am so sorry you and more importantly those kiddos are in this situation…

[Kcap430]

Adding my prayers for a successful treatment plan. Thank you for being in a study that could potentially benefit many. Sending love and support to you and your children ❤️🙏🏻❤️

[love2golfwell]

I'm so sorry for your new diagnosis and the issues you have had with your meds. I hope this new treatment works for you. Please hang in there and know that this is a great site with lots of support and information. Sending you and your children lots of hugs and prayers.

[fancydog]

We all had that scary experience of being diagnosed Stage 4 and wondering how to move forward. For me, I learned as much as I could about the disease and possible treatments for my specific type. I will soon be 10 yrs metastatic and my quality of life is pretty good although there have been episodes that put me to bed for short periods. I encourage you to become your best advocate then you will feel you have some control.

[WhippetX2]

I know that the first few months after diagnosis can feel like you are living through a hurricane that never seems to end. But eventually it does begin to calm down. This site helped me to realize that many women live a full and rewarding life for many years after diagnosis. As you know, there are many treatment options available and more being developed all the time. You too will become a warrior for yourself and your family.

[Bravespirit]

You’ve come to the right place for support and encouragement! There is a wealth of knowledge and experience here shared by many in this group who are living long, happy lives with MBC- I hope reading their stories will give you hope and gladden your heart as they do mine ❤️

As many have already stated, it may take awhile to find the right treatment for you. It is a stressful and scary process, but eventually it seems we all find a glide path.

I am on my third line of treatment in just 9 months and finally have found a treatment that is moving things in the right direction. I pray this is the case for you 🙏

Thank you for participating in the filter trial. Who knows, this may open up new doors for many of us in the future!

Sending love and light to you and your family.

Mary

PS- if you do have the inclination or capacity to learn more about your cancer type, emerging treatments etc., the organization Living Beyond Breast Cancer (lbbc.org) has fantastic resources

[Klamato]

Hi Newbie…my heart feels for you! It is scary but you will get through this phase and concentrate on raising your family and living the good life! I was diagnosed with 4th stage breast cancer more than 8 years ago and was put on 3 different treatment during those years! I am now being treated with chemo infusion and as it turns out, it’s not so bad! Hang on to faith ad hope and live positively everyday!! Your family will feel your peace. I will offer you my prayer today for the New Year and your success with treatment! Hang in there and God Bless. Kathy, Syracuse, NY

[Charlie_99]

Am so sorry. That is simply tragic. What you’ve been through has clearly impacted you and your health. But we are rooting for you. You can do this. And you’ll do it for them. You’ve already been given groundbreaking treatment through your trial so you’ve already had a head start. This is great news! There’s always other options and amazing unexplained remissions. But am sure everyone will tell you, you have to believe in yourself and your ability to heal (your thoughts and mind matter and are key). So while treatment is part of it, seek the help to let go of your doubts and fears and tune into new possibilities with your whole heart and embrace a new whole healthy you with gratitude. This is the way to being your own miracle. If you can manage 6 kids, you can do this no problem. Just listen to what resonates with you (your own instincts/inner self, you and your body are never wrong), ask lots of questions, get more than one opinion from doctors with different perspectives/specialties/backgrounds and above all trust yourself. Just find it, it’s within you. I’ve had mbc going on 9 years now and they have been wonderful quality years living life to the fullest. Focus on the present, live fully and you’ll be writing back to me in 10 years.

[viennagirl]

It is natural to be scared. But anyone brave enough to adopt six children is already a brave person and has already demonstrated strength and determination. Those are such lucky children. I was diagnosed 8 years ago with breast cancer and it eventually became metastatic cancer (circulating cancer cells) which set up residence in different parts of the body. I was put on Ibrance and Letrozole over five years ago and I am no longer have evidence of disease. I think diet - low animal products - miso broths and just generally eating a more Mediterranean diet seems to have helped me. I have lately taken an interest in the Japanese diet and watch many Japanese cooking shows on YouTube. Those diets are rich in healthy broths and veggie soups. They include small amounts of fish, pork and chicken and lots of veggies. It only takes me ten minutes in the morning to make a tasty, very healthy soup. It does mean you have to go to a Asian market and pick up a few basic things. I attribute my culinary adventures into playing a role in staying well to date. My husband who is suffering from a type of Muscular Dystrophy and I have recently started do a 36 hour fast once a week. Fasting plays a role in bringing new stem cells to the body. It isn't easy to fast but we are getting used to it. We stop eating Sunday evening at 8:00 pm and don't eat on Monday - just water and a wee bit of coffee. Then we eat again on Tuesday morning around 10:00 a.m. It is a bit over 36 hours. It does feel good. Fasting is an age old tradition for many cultures and doesn't do any harm. There are also many You Tube videos on fasting. I like Dr. Mindy Pelz and Naturopathic doctor Sten Ekberg. Dr. Sten is my favourite guy because he is very calm and because he tells you step by step what is happening in the body when you don't take any nourishment - only water. I try to soak my mind in all this information and try to do the things that I know I will do. Lately I have started getting up and walking for 20 minutes. I do that before I have anything to eat. I need to lose about 10 or so pounds so I hope it helps me reach that goal. I also have a WAVE mat and sit on it for about one hour a few times a week. If you look up WAVE mats you will find my mat (PEMF).

I know I have been babbling and you are probably confused but I do believe that spending time loving yourself and striving to be healthy will help you get through this dark time. Those children are lucky to have you for a mom. So don't lose heart. Along with the Oncologists who are there to help you there are other gurus who can give you hope for a long and healthy future. Hugs Marlene

[Iwouldlike2knowmore]

I hope that your oncologist helps you through this, I am praying for you and the children.

[michelangelina]

God bless you and your family! I am coming up on 7 years with metastatic breast cancer. I was very scared and overwhelmed at first, but as others have mentioned things settle down and you just get on with living. I will pray that they can find the right medications for you. I am on Ibrance, but for some people, Ibrance is not helpful. But there are ther options. Hang in there!