Stage IV NED crew : lets support each other
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Good for all of us! It’s extremely hard to be positive right now, but even if only in moments we’ll give it a bash!
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Dear Bliss and others, thank you so much for your support. I am always so happy when this thread becomes "alive", because this thread is a real thread for HOPE.
Dear Simone, dear Ally, the trial is for all NED MBCs. The thing is that trial is not recruiting now (full) but all procedures are very easy, and could be followed yourself (which I never advice) or with your MO. I have all instructions from the investigators - they were very kind to send everything to me, and said we could easily follow the protocol with our MO. I think if we could hand scientific articles, clinical trial data and procedures to our MOs, they could evaluate everything (at least it could be an interesting information to them). Please, PM me if you want to have the info.
Dear Dlittkemann, we also have a 5 year old... and we have been in a crazy, very bad situation 2.5 years ago but we are here today. I cried a lot, still cry some today but our son is our light, and we'll do everything to live, to be here for him. You can do this, I know. Lot's of love,
Saulius
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Saulius,
Your son is so cute! I love seeing the pics. Thanks for offering to share your info. I'll PM you, I would like my MO to take a look at that.
I'm still NEAD, although I had to go down to 100mg of ibrance due to several months of low WBC. A lot of women on the ibrance thread are doing well on 100mg so hopefully it works as well for me too.
I hope everyone is staying safe.
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Karen,
Yes, It is hard to stay positive with everything that is going on. I keep telling myself it is only temporary and things are getting better. I am looking forward to when we can travel so I can see my DS, DIL, and grandkids.
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Simone, hang In there and don’t worry about the 100mg...I’ve been on 75mg Ibrance almost from the start and with 2 weeks instead of 1 week off and have been NEAD for almost 2 years. Currently having a 1 cycle break to give my system a boost too.
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Thanks Karen. 2 weeks off would be great. I had 3 weeks off last month waiting for my counts to recover. It felt great having that break.
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He is adorable. Yes I keep trying think same. I’m not leaving my son. Well not til he’s 20. I pray I am here w him til he’s an adult and independent 🙏. Pray everyday for that. Love reading all these positive posts.
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Hi Ladies
I hope you’re doing well. My mom was diagnosed with TNBC stage 4 in March 2020 with mets to lungs, liver and bones. I’m praying for NED.
TNBCers, which chemo regimes did you receive to achieve NED status?
You contributions are highly appreciated ❤️
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Hi Everyone,
I've been off the boards for a while, just very busy with life! LOL.
This past February (2020), I reached the four year mark of my diagnosis. Since that time, it seems that my anxiety has pretty much disappeared and I rarely think about "my" cancer these days. I only have scans every six months and remain on Herceptin/Perjeta every three weeks with Zomeda every three months. My onc never does the tumor marker tests, I wonder why that is.
So, here's my question: when have you experienced recurrences? Despite my lack of anxiety, this is something that is always in the back of my mind. I keep up with the current literature, but the stats on recurrence and OS still lag behind reality. I would really appreciate it if any of you would be willing to share your experiences of recurrence (where/when). Please keep in mind I am HER2+ so this plays a role in they type and timing of recurrences.
Well, here's to good days for everyone. Stay safe and well.
Thanks very much,
Nancy
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nowaldron- Congratulations on making it to 4 years! I'm just over 3 years post-diagnosis and still NED, so can't answer the recurrence question personally. Like you, I do follow the literature though and it appears that achieving NED while Her2+ and continuing H&P all point to lower recurrence and longer OS rates.
Regarding the tumor markers, while my current Onc (I moved to a different state 18-months after my diagnosis) does do my tumor markers, I did not have it done when first diagnosed, so we don't have a baseline. She told me that in some people, tumor markers are really accurate and an increase indicates recurrence, but in other people they're not accurate. Since we don't know what my tumor markers were when I had cancer, we don't know whether the markers would actually go up should I have a recurrence, so the test's usefulness in my case is limited.
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Nowaldron, you have probably seen this study, but it might be helpful to other Her2+ ladies that have achieved NED.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6519755/
Out of a cohort of Stage IV, de novo, HER2+ positive patients, 16% achieved NED, and of those 98% were still alive and NED at both 5 and 10 year follow-up points. Seems like you have a great chance of not having to worry about the cancer for at least the next 6 years. Very likely longer.
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Nowaldron, I'm triple+, too, and was NED for 4.5 yrs until a suspicious CT scan this past December indicated progression to the liver. Finally confirmed this week with biopsy after an inconclusive MRI and two PETS. I'm still highly ER+/PR+, but awaiting HER2 status. My MO doesn't routinely do TMs either. She thinks they're not reliable for me and waits for a scan to show something. They've been rising slightly each month since Dec until dropping slightly in April. I'll be 5 yrs out next month.
Piggy99, thanks for that link which gives me some encouragement.
Hugs all and happy Sunday.
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BSandra there is a good chance she will be. I was de nevo with liver mets just like her. The cleopatra trial shows 37% of participants are alive at 8 years. If NED it is 100%. Gentle hugs to you...at a distance for of course!
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Dear bstein, thanks! I read these studies many times - one of the best readings for hope. And the above mentioned study by MD Anderson for de novo NED... I bought it for $30 more than a year ago, and now it is available online for everyone, that is great! BTW, I have the original Cleopatra study results from 2015 but you talk about more results, do you have links/texts maybe for the follow up? Thanks and big hugs back to Alberta!:) Saulius
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Dear bstein,thanks! I saw this but maybe someone has read the whole study... I like numbers and details:)P Saulius
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The Cleopatra end of trial looks very promising. Haven’t been on the board for a while so hi to all.
I was wondering if anyone has given up Letrozole. I have been on it for over 3 years and have arthritis in both knees, one foot and ache everywhere.
Also have any of you changed treatment during lockdown. I was on indefinite HP but have moved to the subcutaneous H injection for now.
Liz x
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I stopped letrozole after close to 5 years. Side effects were getting too much for me. I did go on short holidays from letrozole which allowed me to last so long altogether. Switched to tamoxifen in the end, which I've been on holiday from since October. Doctor told me last week I could restart and go for the lowest dose of 5 mg but this was equivalent to placebo. I decided not to restart until maybe after the summer.
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Piggy99, Bstein and all: those articles give me such hope for all of us!! Jackboo09: I have not experienced any change in treatments other than not seeing my MO every three weeks. He would see me if I was having problems. He is very good at about e-mailing me back if I have questions. Other than the nurse and patients there is no else at my wing of Lions Gate. No visitors allowed. How are you finding the injections? Are you still doing Perjeta?
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I'm baa-aaack! Like a woman who just married her third husband. Taxol got me quickly to NEAD, Xeloda got me quickly to NEAD, and now Faslodex,Herceptin,Neratinib have gotten me quickly to NEAD. In between there was no “stable" and there were drugs and combos that simply did not work. I either do progression or NEAD. The last two lasted about two years each. I hope this third one will last longer the way it has for you HER2+ people on HER2 targeted therapy. Neratinib is for HER2 negative, mutated. I have a touch of survivor guilt, being in my sixth year of mbc with liver mets, three treatments in a row failing, and then this miracle. Trying to find my groove again.
Saulius, your son is beautiful, and your wife I know must be a very special lady. She has a very special husband.
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Welcome back Shetland! So glad your trial is going so well.
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Go Shetland! Woohooo:)
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Shetland, congrats! So happy for you, and may NEAD last a very long time! After 6 years with liver mets, you give me great hope, that I will be back. Keep truckin'.
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Just wanted to pop in and say congrats! Shetland - that's huge considering some of the early grief you were having on this combo!
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Yes, indeed, Sondra. I felt like walking away but knew I ought to make some adjustments and give it a third try. Still learning to manage side effects. Here's the thing about being third-time NEAD for me: My body has been battered by several years of various treatments including three hormonal, four targeted, and four chemo. Not to mention ERCP for biliary stents four times this past year. It isn't like being someone who has been lucky enough to get NED on say, letrozole, and has been holding there with bone mets only for years. More power to them! And I know nobody's path is easy. But it makes me realize more than ever that there are different flavors of NED, and for me to be NEAD does not mean I can live my life with minimal impact from cancer. Not only my body, but my spirit is feeling battle-weary right now. I am grateful for renewed hope while at the same time I have days lately where I wonder how I can keep pulling myself up by my own bootstraps.
Thank you for the kind words and the welcome back, Simone, helenlouise, Bliss, and Sondra.
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ShetlandPony: Rejoice and try not to feel guilt. Three times NEAD is a victory. And you give us all of hope. Taxol kicks cancer butt --- not without kicking the person's butt as well. I hope your body and spirit will soon be lifted. Keep pulling on those bootstraps!!
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Dear Shetland, huuuge congratulations on NED again (I'll call it NED, not NEAD:). We are not special in any way, we are very simple but thank you. In the mean time scanxiety kicks in, as this and next week we have MRIs and Ultrasounds. We got worried last week, as she noticed some minor changes in her remaining breast, as well as PMS symptoms that may be influencing these changes. Nevertheless our anxiety is sky-high, as her C is very sneaky (likely IBC):/ I just pray that everything is alright... Will keep you all posted... With all my heart, Saulius
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WOW, Shetland Pony!!! Three times and with biliary stents. The procedures there must be a big pain in the neck (I'm guessing) and must be mentally and physically exhausting. Keep pulling!
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Thank you, Elderberry, Saulius, and Heidi.
I edited to clarify that the stents have been in the past year. They are under anesthesia and I usually have a fat lip and a sore throat from the procedure. But they work great.
Thank you fellow NED folks for hearing me and understanding how I feel happiness and hope while at the same time I feel the difficulty and exhaustion. I feel the need to acknowledge the extraordinary toll mbc has taken on me. I think I'm sort of working on a new mindset. I am finding it too difficult to pretend to myself and others that things are “really pretty normal just some fatigue" at this point. I still love my life and enjoy many good things...but yeah.
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Saulius scanxiety is so hard. Waiting and hoping you guys get a good report!
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here it is!