I have a PET scan on May 3rd and i'm super scared. I have triple negative metastatic bone cancer. My last scan was Feb and it was good. I am now having pain in my hip, same side as where the cancer in my femur is. Couldn't sleep last night because of the pain. The pain feels exactly the same right before my femur fractured. Overall survival rate is very sad. I have a neuro diverse 17 year old and an amazing husband of 21 years. I can't believe that I will be gone soon! So sad and angry! I have been fighting my sobriety since 2002, had back surgery, hemorrhoid surgery (most painful thing ever) pins in my hip and knee ( due to the fracture )and can't count the numbers of hospital stays I have had. After all these years, working hard with my son, and managing everything, I'm not going to be around. Just needed to vent and hear from anyone who can relate.
scared: I have a PET scan on May 3rd... - SHARE Metastatic ...
scared
Dearest Luxie,
So so sorry to read your post! You have undergone so many challenges; please don't jump to conclusions that your cancer has progressed. You don't mention what MBC treatment you are receiving and its side effects. If your MBC is "bones only," there are many treatments to delay progression.
You will be in my prayers, especially as you reach that day of "scanxiety!" God bless you, Luxie!!
Linda XXOO
Thanks lady😁 it's the triple negative that sucks.
Dear Luxie,
Yes Triple Negative sounds ominous. All of this can be overwhelming. There may be options for you. I was triple negative before mutating to ER+/PR HER2 Negative. The first thing my oncologist told me when I was diagnosed with MBC was there is currently a lot of research underway on Triple Negative. I thought for sure I was under a death sentence at the time. Some of the newest treatments in the MBC pipeline are for Triple Negative. Hopefully your care team is on the lookout for your next treatment line. Scanxiety is real, however I choose to see scans as a tool which will help me manage my disease, same as blood tests and other labs. Better to know and get the right treatment than to not know. I had a scan on April 6th which showed progression and now I am in a trial and on my second line of treatment. Ask your care team to sit down with you and walk you through all the treatment options including social support. Get a second opinion at one of the cancer centers if you need to. Look for Triple Negative trials. You can walk this walk and you will not be doing it alone. We are all here with you. Praying you will find answers that will bring peace.
Please dear Luxie..Stay strong. I can`t help you personally. But i know this oncologist can help you.
nagourneycancerinstitute.co...
My dear mom has stage 4 her2+ cancer. And at the moment i am trying to make and raise money so i can take her there for her 70th birthday. I am from Slovakia - Europe and i have read so many stories ..and watched so many videos from Dr.Nagourney. I even called their office and they are super nice. For us in Slovakia it is expensive but i can tell you the price is not that much for what he is giving his patients..
If you can give them a call and i wish you from the bottom of my heart ...HEAL! god bless you and everyone on this forum.
Peter from SK
hi Peter,
I had a look at the website of Dr.Nagourney. I can’t find any pricelist. Can you please give me any rough idea how much the testing cost?
Many thanks
Dear R7777,
I apologize i write a lot because i type as my thoughts go and they go a lot..and are fueled by thought of helping everyone who suffers with this illness.
So with Dr. Nagourney i have contacted them and received the cost in my email.
It is less than 10 thousand dollars with our travels from Vienna(Austria) to Los Angeles.
To be honest i have not fully maybe understood if the price is only for the specific tumor diagnostics in his laboratory + the complete list of doses and amount of them etc+ recommendation for your oncologist to give you the prescripted dose. Or it also includes the drugs and treatment in his cancer center because he does offer that as well which would be a dream for me and my mom to have the treatment with him within his clinic.
Either way i am willing to make the money + we have donation page...to be able to do that.
My dear mum will be 70 this september this will be the greatest gift i ever gave her.
Dr. Nagourney will celebrate his 70th birthday month later after my mum just a coincidence 
(i google everything lol i am a curious person)
Also forgot to mention consultation call over skype with him personally is 550 dollars.
When we look at USA and the prices people have to pay there it seems like incredible amounts of money. Even though our healthcare is free here or more like 60 euros a month more or less, things only happen in USA. We have all drugs Enhertu, Kadcyla, Herceptin and basically the same as everywhere in Europe and USA but the main problem with this is as Dr.Nagourney says they are not doing the specific tests as he does.
So lets say a person has breast cancer they do biopsy then say as based on results its her2+ and apply the same doses, treatment as they did with previous 10000+ patients.
What i really loved about the things Nagourney does is he takes approx. 1.5 cm tumor out then puts it into his lab and tests what exactly kills the tumor completely. I have also read he can trace the metastatic cancer cells and he can basically find out how they mutated and what drug works with them. Sorry i can not explain it better...I have some limitations in my English but that doctor is just amazing and it seems like i am doing an ad for him but in reality i am just a boy who wants to save his lovely mum+ help anyone who can get the help and i love you all so much i hope you will get healthy all of you lovely ladies here.
Within his blog i read about a woman she had a liver metastasis big one and she was yellow when she came for his treatment and she went into complete remission after his treatment ....let me find a link to it:
nagourneycancerinstitute.co...
nagourneycancerinstitute.co...
Please read it and i really am positive you all can cure. Call me naive but i BELIEVE IT.
I have been on this forum i am reading it almost every day and there really is so much empathy for you all...i always had it for people but after my dear mum got this illness the lack of empathy the doctors had towards her was absolutely crazy..."there is no help sorry no cure" which might be true because they have the tools (drugs) but they are obviously not using them the right way...Which isn`t to criticize doctors, no...they just do what they are told by the state healthcare system. And one thing i know, and i stand by it...system doesn`t always want you to be on the winning side. You need to love yourself and catch the best for you just as you go to the shop you are trying to pick the nicest looking oranges or bananas not the one that have scars etc i hope you understand what i mean to say...
Dr. Nagourney is the primary option for me and my mum but i have so many other things that are proven to be working...Please...i am here to help anyone with links information even my own explanation and how it works on my mum...The things we apply..Send me a message and lets talk and my goal is to help my mum and you guys. I want you all to live a long happy life. One last thing... i don`t really like the word "hope" it`s not a terrible word but it is Weak word..."hope" I replace the word "hope" with "action" .....Hope is not enough...
And last last thing....even if you manage to get into remission for few years and god forbid the cancer comes back, it may not but if it does in few years time there will be lot more options for treating it. But the main goal is to get rid of it or minimize it as much as possible. I will help everybody with any questions you have regarding the things i have learned since my mum got this illness.
I wish you from the bottom of my heart ... EVERYONE HEAL and live your beautiful life. You deserve it 100% and you all mean a lot...as i always say to my mum.... If you loved yourself the way i love you ...you would heal today...
Love you all!
Peter from little country Slovakia ❤️
Please everyone makeyourself comfortable and listen to this podcast. It`s amazing!!!!
nagourneycancerinstitute.co...
I think she was tripple negative too.
Love to you all amazing People!❤️❤️❤️
This book is an absolute must! You can buy it on amazon uk.
Good luck. Your Mum is so lucky to have you!
"Good luck. Your Mum is so lucky to have you!"
Thank you very much for your nice words 😇
Very highly recommended indeed! i have both older and newer version of the book + i ordered Jane`s online course.
She herself has beaten stage 4 twice in her life.
There is also COC clinic in London and this is a video with one of their clients.
youtube.com/watch?v=2-YrZMI...
🤗🤗🤗
well done you! Yes. I have both versions too, online course and I have been with COC for 2 years!
Thats fantastic! Now would be a great time for that Nagourney selective "low dose flush" and i am sure that would help to put you in remission. I wish you only the best and if you are on COC protocol already that is managing the cancer very well and basically starving it. 🤗🤗🤗🤗🤗🤗🤗🤗🤗
diagnosed Dec 2020 hormon +, Her2-,
Had targeted therapy only. With COC for 2 years. Taking all the off label druggs and many supplement. But as if last month- there has been a progression. But I think its my fault as I was indulging on som nice food and occasionaly alcohol.. so I feel its my fault.
Back to juicing, intermittent fasting, paleo diet.
Peter! I just found out this from my onc! It's i the UK - You don't need to travel all the way to LA! They do sequencing as well as chemo sensitivity! Treatment made to measure!
Dear R7777, sometimes not even a family would do what you did for me. Thank you very much for being such a wonderful person as you are, that you took the time to send me this information...i do appreciate it so much...and the fact you took the time and sent it is the thing i appreciate the most! I wish you the best health and i am very grateful....❤️ Peter
hi Luxor,
Although I’m not triple negative, I understand your fear. I just had progression to my colon after being diagnosed 1/2022. We both need to see what next steps are. You may be doing just fine. Cancer itself is a roller coaster. I agree with Best521 there maybe clinical trials out there. I know a person who is TNBC. I think she’s 6 years out. I’m sure I could connect you on Facebook I believe she’s on the MBC trials and innovative treatments page. I hope this helps.
So sorry to read your news! May there be an effective treatment out there for you!
That's really tough. I hope you get some good analgesia for your hip and a surprisingly good PETCT result.
hang in there. I’m praying for peace that passes all understanding for you. Our cancer journeys are often up and down. This is definitely a down time for you. You never know that possibilities of what good can happen for you. Trust God. No one ones the day we’re leaving this earth or the year. This is true with or without cancer. I hope you feel better soon.
So sorry to read your news. Do feel free to vent here as much as you want as this is a supportive place.
Hello brave woman. What a journey you've had. My heart goes out to you and the situation you're in. It sounds like, apart from the pain you're in, your concerns are for those you'll leave behind.
Regardless of when the scan is you need adequate pain relief now. I hope you've got this in hand with the medical team.
How comforting to know you've got a supportive husband who will no doubt help you through your journey and support your son to the end and beyond.
One day at a time.
Lx
Yes! There are numerous trials for triple negative and it is also the only BC type that responds to immunotherapies like Keytruda under the right circumstances. Definitely get a second opinion at one of the centers working on triple negative. You also might ask your GP for some Xanax for right now to calm you until you have a plan. Just a small amount helps with the scary thoughts.
--Trish
so sorry to hear! PT scans are stressful. It’s also normal to connect every pain to the cancer. I do it all the time. Just know we’re praying for you.
I agree with Linda Luxie. Don't give up. Tell yourself every day that you are healing. I believe you can get your mind to work for you and help you heal. I know that will be hard to do but you have recovered from so many things that you are basically a survivor. Keep that in your mind. It is also very courageous of you to reach out to us. Start reading about people who willed themselves to heal. Every single day tell yourself that you are healing. Your brain will help you heal. And smile at yourself in the mirror. I believe in the power of the brain. Find peace in knowing that you and your doctors are going to work together to get you well. Hugs Marlene.
Luxie you are a princess warrior, strong and resolute. It sounds like that’s who you are at your core, a strength developed over the many battles in your journey. I have had to learn that even though we’re strong, there are times we have to hide behind another’s shield because we get so tired of holding up our own. And there is beauty in absorbing another’s strength and protection! I hope you hear all our voices spurring you on to not lose hope, keep seeking out new trials and asking questions. Envision ALL of us walking into the scan with you, standing around that big old tube with our hands in yours. The only way I have been able to breathe the light the heaviness of my cancer journey is the prayers of so many - I KNOW the Lord has heard them and fills me with calm and peace and hope. Prayers for you!!
let me say I’m so sorry but I guess you have had this cancer awhile. Triple negative is difficult but there are options. I just recently went through a lot of pain in bones and joints. I have been diagnosed since 2018 to bones and now a spot on the liver. Don’t be scared about the PET. At least you will know. I recently started xeloda and stopped fulvesterant injections and feel so much better. Less pain and moving more. I wish you the best and be strong🙏✝️ you can do it!!!🌹
I’m so sorry to read your story looks like you are a real fighter and don’t give up. As my doctor told me last week ‘there is always hope’. I’m sure we are all here for you! Remember we are all in this boat together. Hugs! Write everyday if you need to. Hope and it is a very powerful word and pray!
Just so sad for you, l am holding a space of love and hope for and with you. ❤️💔❤️
You have overcome many obstacles in your life and want you to realize the wonderful things you have done, sobriety for over 12 yrs Wow! YOu are an an inspiration for others.! Scanxiety is a normal reaction and especially when in pain it is extra scary but there could be many reasons for pain in the hip area. Try to appeal for pain reduction now! Take it day by day, and sometimes its hour by hour for us and that's OK. Never lose hope, you've seen the posts from others about options for triple negative, try to breath and find a comfortable mental place to rest. Its fine, if its here 😍
I don't know what to say to you words aren't enough. All I can say is have faith and know that there is life after death and trust in the Lord.
This cancer is really scary! Don't be hard on yourself for being scared! Has anyone told you that we don't generally die from bone mets? I've heard that many times, from doctors, nurses and from others with MBC. Have you ever seen an onc that specializes in breast cancer? If you are in the US, the top tier of cancer centers are those designated "Comprehensive Cancer Centers." They have very specialized oncs, are med school affiliated and do alot of the research and clinical trials. They are listed on the website of the National Cancer Institute. When I was first diagnosed, my onc referred me to one and the bc specialist onc I saw was amazing! When she examined my breasts, it felt different than when any other doctor had, as though she had radar in her fingertips! In the 19 years I've had MBC, I've been back there twice more, and had a virtual visit, too. My original onc retired and my new one doesn't inspire the trust I've had in the others oncs, but I'm beginning to trust her more than at first. Do you and your husband have people you can talk with about your son and his long term needs? I sure understand your concern about him! My daughter had a seizure disorder starting when she was four, and it took over a year to get the seizure controlled. Her welfare was always on my mind. I hope your son does well and that you find ways to make peace with all the challenges you and your family face. My cancer recently quit being E + and is now triple negative! I just started my fifth cycle of Xeloda and am hoping it gets the cancer in my abdomen controlled. The past six months have been the hardest for me since the first months of having this lousy cancer, when I was having to adapt to living with it. Sending hugs, prayers and best wishes...................
Dana Farber is starting human clinical trials on a new treatment.
"In a preclinical murine model of triple-negative breast cancer, treatment with low-dose chemotherapy and TTX-MC138 eliminated pre-existing local metastases in 100% of treated animals representative of stage II/III metastatic cancer. " Ask your oncologist about trials like this one, --Trish
Scanxiety is real but I wish you good results. Breathe!
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