Stage IV NED crew : lets support each other
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dkittleman, I am sorry you did not get the news you hoped for. I can't answer your question about treatment but I would suggest BestBird's book about treatment options if you don't already have it. It really helps give you all the current options for your specific type of cancer while you work with your doctor .
Here is her link with the info to get it"The Insider's Guide to Metastatic Breast Cancer": https://www.insidersguidembc.com/
there’s a free pdf or you can purchase the book on Amazon0 -
Dear Dkittleman, uh no, you were stage IV NED and now they suddenly see something? Maybe it is something else than cancer, I mean is it really confirmed? Saulius
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I was NED in 2018. But it came back this year. Feb 2020 in my bones. I am sad because I am on immunotherapy and chemo. I really felt this scan would show some improvement but it did not. Will know more after dr appt. I pray he has another plan. My biggest fear is him saying nothing else we can do. I am 45 and have a 6 year old son.
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so my MO put me on Xeloda along w staying on my immunotherapy. Has anyone had success on this drug? Any positive stories would be so helpful right now. Thanks in advanc
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dlittkemann, I guess asking in the threads of zelda and whatever other drug you are on may get you more responses.0 -
Hi dear people, this thread has been such an encouragement ever since I was diagnosed de Novo in Feb 2017 with her2+/er+ liver mets... Anyways, I started Kadcyla beginning of May this year and just received the best report since diagnosis... First time no evidence of anything bad after five cycles of treatment. I'm still in shock to be honest, well a good kind of shock I guess. I've had Dosetaxol and Herceptin and aromasin first line, then Taxol with Herceptin, then Faslodex with Herceptin, in-between SBRT radiation to liver, and now Kadcyla. I'm a Christian, so the gratitude I feel goes to my Lord above all, but I just wanted to share this happy news with all you special and brave people..Thanks, Nula from South Africa
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Daywalker, woohoo! Congrats on the good news!
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Great news Nula! Isn’t it good to be able to share with those who know what a huge deal this is for us? Long may your stable condition continue!
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Happy for you, Nula! Thank you for sharing your good news!
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Nula, I’m so happy for your good news. Thanks for sharing that with us
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Thank you so much for the kind words dear ladies xxx
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Dear Daywalker, super news!:) We pray too you stay like this forever! And remember, future of cancer treatment is bright, let's just hope we manage to jump into the fast arriving train:) Saulius
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Hello everyone, Boo here, I founded this thread in April 2015 and I am humbled, amazed, astonished at the number of posts and messages from so many resilient, strong, brilliant, extraordinary, amazing women / men from around the world. What a fantastic supportive community! I feel uplifted and encouraged, despite having fallen off the NEAD wagon a while since. I am currently facing a second liver resection, so thought I would just look in to read this thread to seek resilience and that is exactly what I have found.
I would just like to thank each and every one of you, current contributors and past contributors, for the wealth of love, support and care for each other that this thread has generated. More power to all of us as we continue to deal with our individual health challenges. The kindness of strangers has found a home here.
Much love,
Boo
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Boo, was wondering how you were and hoping you were well, it sounds like you don’t have your troubles to seek. I do hope the resection is a success. Delighted you popped in here and, as the founder, I’m sure the others here will join in hoping you will drop in from time to time and let us know how you’re doing?
Scan due for me now, 28 months after diagnosis and still on first line tx.....I’m getting to that anxious threshold where you think you’re running out of NED time...we’ll see how the results go.
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Karen, hoping you get a good scan and are still ned. I just had mine and I can breath for another 3 months.
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Hi Boo
Just want to say that I am thinking of you as you await surgery and hope you will make a speedy recovery. Thank you so much for this thread. Please keep in touch.
Karen, I had a CT on Fri 3rd Sept ( I scan every 6 months) and am 3.5 years on from stage 4 dx now on Herceptin subcutaneous injection. I dropped Perjeta I'm March and so feel nervous about upcoming result.
Sending very best wishes to all
Liz x0 -
Jackboo09 have you had your results from your CT scan. I had my 6month today, still hoping to expect good news and stay NED. Just over 5 years since diagnosis and 3 years NED
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Hi Almosthere
I will get a call from my Dr on Fri. He may not have the full scan results as it has only been a week. I’m not as nervous as I normally am because I’m busy helping my son prepare for his second year at uni.
Congratulations on your lengthy period of NED and I do hope your scan remains clear.
Liz x
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My scan shows no progression. Hugely relieved.
L x
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Yay Jackboo!!
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Congrats Jackboo!
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Great news Liz! Glad to hear you’re busy.
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Well I’m not NED anymore. Progression in my lung... not huge but enough to know the I/L has failed. I switch to Faslodex tomorrow. Wish me luck...might be back here at some point.
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Karen, sorry to hear it. Glad it isn't huge and hopefully Faslodex will treat you well and get you back to Ned-land soon.
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Karen, I'm very sorry you've had progression. I start Faslodex on Friday. Wishing us both luck and success with it, and that we are both back to the NED zone soon!
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Bliss - had first Faslodex Shots yesterday and was very anxious as lots of folk said they are painful. It was absolutely fine...my nurse has plenty experience and she reassured me. So we did it standing up, took the weight off the side being done, put it in slowly and she gave a good rub in afterwards. She put in to the upper outer quadrant of each buttock, so not the bit you sit on. It’s a wee bit tender, tiny bruise and a wee lump and that’s it. I did take a couple of paracetamol and and anti histamine before going and put some arnica on the bruises later on. So all good and hope it goes as well for you! Might see you on the Faslodex girls 2014 thread!
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Hi Karenfizedbo15
Good luck with your new therapy
Like you I have lung mets and now started on faslodex/ kisqali combo
I am in NSW Australia
Australia PBS in Late August finally added Kisquali(Ribiociclib) for MBC patients
I have to pay for faslodex shots but can get a reduced rate at public hosp pharmacy and my health fund will reduce cost again .After shots 2_3 if all goes well there is no cost.
I was also apprehensive about shots ..everything went smoothly with very experienced nurse
I will have ECG and bloods every fortnight to check for low WBC
Also the Mcgrath foundation an Australian BC charity has a program for Nurse BC Support and has expanded this to included Met BC. Extra support at this time lessened my anxiety
All the best
Bright in hope
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That’s good to hear Bright55...another country which has approved a combo like this as second line. We don’t seem to be caught up here, but they know it’s coming....just not quickly enough for me it seems!
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Karenfizedbo
Sorry to see your post about progression, but encouraging that you are on a treatment. Message me any time. X 💜
Liz x0
