Hello. I’m feeling both extremely hopeful and confused. My Petscan of my Stage 4 Breast Cancer with two bone mets on my spine was completely clear and showed no sign of cancer after five months of treatment. All 6 lymph node involved cancer under my arm are gone and the nodes aren’t even enlarged with a follow up ultrasound. The two bone mets are gone as well. The doctors didn’t know what to say and have continued my Verzenio and Fulvesant protocol at the same level. I am scheduled for another Petscan in April.
The doctors aren’t acknowledging it as a full remission and seem to be cautious to say anything. Has this happened to anyone else?
Any feedback would be wonderful. I am extremely grateful of course but emotionally it has put me in a tailspin. Their response is confusing.
Thank you...
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Buster2020
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Congrats on awesome scans .!!!! I think the word remission is not what they use lightly especially in out situation but your meds are working and you are doing great !! enjoy !!!!
Thank you for your message. You’re right...being grateful is key. One day at a time. I am continuing my treatment and positive outlook, I think the PTS from the previous cancer has effected my feelings of the cancer results changing yet again. I have to stay in a positive and hopeful state of mind in this moment.
I went to see my surgeon last week to possibly remove my tumor from my breast and while she was doing my breast exam i was back 1 year ago not knowing anything scared confused with in 2 min . I know i have PTSD from all the testing, news you get and the unknown from the beginning of my journey . Things didn't look good with bad news over and over that when you get good news its hard to imagine that still exists .
Now being NED for the last 6 month has thought me to live in the moment and enjoy life as much as i can . Im planning for summer and im grateful that i feel good and that for a while i can pretend im healthy .
Now that i have to make a decision to have surgery or not brings back some old feelings but im sure it will all fall into place .
You have been down a different road then me ( i was stage 4 from beginning ) but we are all in the same boat now . Good luck and please enjoy those good results and try not to think to much .
Congratulations. I am kinda in the same situation. My latest scan showed no evidence of disease. But that does not mean remission. At least not in the real sense. It means that you are doing things right, meds are efficient and just enjoy the present.
Thank you... congrats to you as well. I appreciate your getting back to me. If cancer has taught me anything, especially after the second occurrence after a four year break is that all we can do is truly stay in the present and be grateful for good news when it happens. Big hugs to you!
Congratulations on such great PET CT scan results! I can understand your reluctance to shout it from the rooftops. I felt the same way after my last PET CT scan a few months ago. I had it as a prelude to stereotactic radiotherapy on two spots on my spine. When I heard back from my oncologist she said that the stereotactic radiotherapy had been cancelled. I was so disappointed, but she said that it was good news as there was evidence of healing and I was in remission. Like you, I didn't know how to take the news. My husband was elated and friends were also happy, but I felt deflated. So I can completely understand how you feel. I have also carried on as normal. With this disease, we can't just stop treatment. It will need to be ongoing if we want to keep it at bay and from progressing.
Thank you for your words... yes, it is not somethingI feel too public about. I am so very grateful for being clear at least for now. I’m thinking positive and continuing with my treatment in both western and eastern medicine. There is so much that goes into the soup of why’s and how did this happen?
I didn’t tell anyone after I found out my cancer returned in September, not even my therapist, except for my posting in this group for emotional and moral support and to not feel so isolated... I kept the news that I was now stage 4 breast cancer and it had spread to my spine to myself. I just couldn’t have my loved ones worry and get so frightened again. I didn’t want to see the fear in their eyes. If it would have become worse and not stabilized I would have shared the news of how serious it was of course. I guess it’s day to day. Being present, following the medical protocols, being grateful. My Petscan in April will let me know if it continues. I am praying it will but feel strong enough to take the news if it changed again. I am having an explant of my double mastectomy this summer. The implants were the ones recalled for causing cancer. I’m going flat. One step at a time.
Very brave! I have wondered about that but with multi bone Mets, I doubt the implants will be what will take me. But with your good report, good idea to get them out.
i hope you celebrate the news and you! this body has shown a similar scenario. after four months of treatment, the scan showed ...decrease in size and metabolic activity of metastases, and no new metastatic disease. then, the next three month scan showed stable. the onc has (comfortably) expressed No Evidence of Active Disease with scans for the past fIVe years. i accept this, as i know it can change.
It's called "No Evidence of Disease" or NED. It's the best kind of treatment response one can hope for. I hope you get to keep a long and stable remission for a super long time!
Hi. I’m also being treated by a Tibetan Physician with herbs which has been a very big part of it as well as Paul Stamets mushrooms, Turkey Tail, Agarakon and the Mushroom Immune Support. I changed my diet pretty radically, no sugar, caffeine, red meat, nightshades and gluten. I also learned to meditate which helped a lot. Made some career changes and am doing what I love, writing. The book, Quantum Healing, the new updated edition helped immensely as did reading Radical Remission. It helped me have hope. As you know things can change with cancer but 8 tumors are gone so something worked. I am focused on keeping life simple and appreciating every moment.
The Verzenio wipes me out energy wise so it is difficult to feel as if I’m back to normal, but I am continuing the same protocol until the doctor feels otherwise.
Hi I loved reading your post!!! Using both Western & Eastern approach is what I want to do. Would you mind sharing who your Tibetan doctor is? Do you know if
he /she does virtual appointments? Thank you so much!!!
enjoy it - radical remission does happen to a percentage of people. An oncology nurse said that for some people stage 4 cancer can be viewed as a long term chronic disease rather than a death sentence.
Congratulations on your great news. It is so nice to hear of more and more ladies with NED. It must be quite a difficult thing to process and fully let yourself go with. Let’s hope you can enjoy a lovely Summer
Yes my daughter has no evidence of disease. Invasive breast disease gone ( and shown after single mastectomy), lymph nodes clear, internal mammary node clear, liver lesion gone! It means you both had a great response to chemo! But stage 4 you continue on your meds and in her case it is Herceptin every three weeks. She is being treated aggressively as she is only 41 and so she also had radiation. She will do deep tissue implant in six months to mastectomy side and they will even out the good boob. Then we pray! She like you will have scans very very often! As we say Mazel Tov to you both!!
So happy for you and I hope that it continues for a very long time ! Celebrate ! x
I have been on Ibrance /Letrozole for 3 1/4 years for low volume bone Mets and have been fortunate to have been ‘stable’ since my first scan over two and a half years ago . My onc at that time said that there is no such thing as remission in MBA , but if there was I was as close as I could be to it ...I asked her if I had ‘ No Evidence of Active Disease ‘(which I had read about on this forum ) and she said ‘yes’, however she always uses the term ‘stable ‘ . I always look at the brief summary of my radiology report , and the consultant radiologist puts “stable disease” at the very bottom of the summary report . So I have accepted that being stable and pain free is good, and am staying on this medication until it no longer works or something better comes along ...
Teddie that is great that you have been on those meds for over 3 years. I am on my 4th cycle of them and hoping I can stay on them a long time as I feel very good and don't have a lot of side effects. Have you ever had radiation on your bone mets? My doctor recommended high dose stereotactic radiation on the first met they found and now wants me to have radiation on a second met which is also small. I'm just curious if this is something that other doctors do also. I am so glad you are NED. I hope to get there, too.
I’m glad you feel good and have minimal side effects on Ibrance . I have never had chemo or radiation as my MBC diagnosis ( small bone mets were in left iliac crest and right ischium and tiny foci in distant thoracic spine ) was de novo late 2017 and I started on Ibrance 125 mg / Letrozole straight away. Then after my first scan the small bone mets had a sclerotic transformation ( shown as ‘sealed over ‘on the scan ) , and some of my sclerotic lesions are less apparent now on scans than before . I am also fortunate to have been pain free and no other sites of metastatic disease since my first post treatment scan .
I hope that I can continue with Ibrance for some time as I have tolerated it well with not too bad side effects . My white blood cells and neutrophyls have dropped a bit in the last six months , ( currently 1.26 neutrophyls and 3.0 white blood cells on day 28 of my cycle ) so I may drop from 125 mg to 100mg Ibrance at some stage ,if neutrophyls go below 1.00 on a regular basis . But hoping I can stay on this protocol for as long as possible ! I wish the same for you too ! Take care! x
Congratulations on your wonderful news. I am so very happy for your results and also that you can stay on your current medications. It brings much hope for the rest of us on this site. Hope you will get continued good news on your next scan.
That is wonderful news Buster. I do believe mbc can be cured. I think you need to keep doing whatever you are doing at least for quite a while until you are sure of the healing. Can you share some of the Eastern medicine things you are doing. I just read on line that cinnamon is a very good thing to drink in a tea form to help heal cancer. Has anyone heard of this. Hugs Marlene
I feel the same way. I believe that a cure is in the future and that long term remission might be possible for many of us. So I won't give up hope of that. I have heard that cinnamon is very beneficial too. I normally add it to oats. Cumin, turmeric and many other spices are also good for cancer. I find it easier to get the benefits of spices by eating a curry. I made a vegetable curry last night. I added several shallots, lots of green beans, some carrots and tomatoes. I sometimes add kale as well. I much prefer cooked kale, so I should add it to my next meal that I make.
New to this site. I have extensive bone mets in spine and other areas, diagnosed in December last year. On ibrance, letrazole and Questra once a month. Reading posts here has given me hope that I too can keep on keeping on. Still trying to wrap my mind around my new reality. PET scan again on 25th if March. Hoping for positive results.
As a matter of fact I just received my PET scan results this morning. My oncologist said the mass in my breast was gone and all other on spine, scapula and under arm are shrinking tremendously. I was diagnosed with METS in July. Started Ibrance and Letrozole treatment in August. Just about 8 months. Dr is very happy with my results and so am I!!! Although this is a chronic disease the medications do truly work for the most part! God bless and well wishes!
wow this is my first time here and I was looking up the new medications I’ll be getting this week and saw this. Congrats to you, it’s great to see. My first q was going to be did you change your diet radically as well? Sorry that I’m not good with the lingo yet (guessing MET means metastatic)?
Im stage 4 also, spread to my spine, (broke it unfortunately), released from a couple of months in hospital recently and had been getting excellent reports back on the Herceptin / Eligard mix like normal tumor markers, lesions on spine shrinking, etc. But I knew deep down my diet was terrible in regards to all the things you mentioned: sugar, caffeine, gluten. Last report wasn’t as great - it “lit up again” after the last Petscan and now they want to bump it up to stronger meds and Faslodex. I’m terrified. I immediately quit all of the above in my diet and a week later the scab on my B stopped bleeding completely and it no longer hurts. I’m feeling pretty good. Tbh I want nothing more than to stop doing any of these treatments; I’m otherwise very natural in my approach and the only reason I agreed to all of this was because I would’ve died.
Really happy to hear you had such good results with your lifestyle changes. It gives me hope that I can effect changes too with what I feel deep down: our bodies are meant to heal themselves, sometimes we just need to help a little.
Good morning,My apologies for not responding sooner. Diet is a huge part of self care. Not eating sugar, red meat, processed food, quitting coffee. I really address my issues with gluten and inflammation, learned to meditate, breathe and most importantly do a lot of work spiritually and emotionally letting go of past trauma.
Radical Remission by Kelly A. Turner, shifted my thinking immensely as did the new updated edition of Quantum Healing by Deepak Chopra showing how powerful our mind body connection is.
I try to stay as positive and hopeful as possible and though there are definitely moments of fear instead of suppressing it I let it run through me and then focus on hope and miracles.
There will be a cure someday, I truly believe that, until then I am trying to stay positive and trust.
A new Pet scan was just ordered for April to see how I am doing. I am hopeful but it as we all know is stressful. All I can do is keep up with my self care as well as take the medicine, supplements, herbs, and continue doing what I am doing to heal and make peace with not knowing the results or what tomorrow will bring.
This group has been a lifesaver in so many ways.
Knowing we are not alone is a big part of staying strong.
Many thanks for this - I’ll look at those books too. Sounds like you’ve really come such a long way...sending you the best thoughts for continued improvements and excellent results~
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Pain and depression
not so great Petscan
mixed results??
Changing treatment
First scan results since WBRT
