De Novo Stage IV
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Yay me! Today is the first day of my 21st year after being diagnosed with Stage 4 MBC de novo!Originally ER+, PR-, Her2+++ with liver mets. I had a recurrence in 2 chest nodes 11 years ago, which changed me to Her2- Somatic. I have had A/C, Taxotere, Gemzar, Herceptin, Aromasin, Faslodex, Kadcyla, Poziotinib, and now on Xeloda and Herceptin. I have indeterminate spots in my liver and lung, but they are stable. I am currently on Xeloda and Herceptin, for 5 years now.My diet has always been "everything in moderation", except for pure soy products and alcohol.But now my diet has been compromised by the fact that I am on Xeloda (and have to avoid foods high in folate). And I now have hypoglycemia and orthostatic hypotension, which makes my diet even more restricted.But I will soldier on....
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Big congrats Denny 🎉
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Double congrats here.
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hello im new here
I dont know where to start but i feel every symptom of de novo stage 4 i dont know how to tell it to anyone i have a one month old daughter and i cant even love her due to this situation... anyone give me some peace
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Denny, congratulations! I love your story!
liyadens, sorry for what you're experiencing. Please let us know a bit more of your situation.
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liyadens...so sorry that you have to be here with us. Please check my post on the previous page. I am at 21 years of Stage 4 MBC de novo. There are so many chemos and treatments that work very well. And we are all proof of that.
Please tell us your story so that we might be able to help you. We are all here for you!
Denise
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i felt a lump in breast almost 1 n year ago thought it be fibrodenoma nearly i had a misscarriage and then got pregnant i stopped feeling that thinking its something hormonal I live in asian country in rural areas now after birth i felt axillary nodes and than started to feel every other symptom as i had low iron in pregnancy fast heartbeat but gyny didnot bothered as pregnancy got no complications.... now im freakingly worried just i had sciatic pain in pregnancy 7th month also still now also....lump in my breast is still,,,now feel something in my other breast too..
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i dont know how to cope with this situation....i dont know about treatments feared of everything not a person whom i can tell it...our country is under developed....am just crying every minute seeing everyone around me especially my one month old daughter....i feel like its too late to go hospital😭😭😭
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liyadens12, I’m so sorry you have to be here. I can’t even imagine the shock after having just given birth. There are many of us who have been diagnosed de novo who are doing well. Please try to get treatment if you’re able. I had my cancer for more than six years without knowing what it was and no treatment. You can come here and write any time to get support. I’m sorry I can’t be there to hug you in person. My heart hurts for you.
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Liyadens, pregnancy alone can cause lumps in the breast and back problems. If you haven’t actually been diagnosed with cancer, please go to a doctor or hospital with your concerns and make them give you some answers. We know it’s hard and you can’t help but worry but knowing and reacting as soon as possible is always best. Good luck to you.
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liyadens, you are dealing with a lot. It sounds like you have no support system. Is it possible, since you apparently have internet access and some kind of computer or phone, to google information to find some kind of resources that are available to you where you live? Can you contact your gynecologist and ask for some referral to see an oncologist?
Your fears are understandable. You may find the section of this forum. “Not Diagnosed But Worried” to be helpful. https://community.breastcancer.org/forum/83. Take some deep breaths. Do what you can to see a doctor. Do it for yourself. Do it for your child. Many hugs to you.
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Wow denny123... I have no words, you are an inspiration. Congratulations! Saulius
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denny123, thanks for sharing. It is wonderful that you can celebrate all those years. It’s a comfort to all of us.
liyadens12, I’m glad you found us, but sorry you are going through this with us. I don’t know if this will help you at all, but know that the first few months after diagnosis tend to be difficult for all of us. The uncertainty of the cancer details and what treatment MIGHT look like are challenging. It’s difficult, but for me, things got better with time, taking each day one at a time. I hope things get better for you as well. ((Hugs)
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Cross-posting
As you know, I talk highly of RC Horowitz and have been taking surveys with them since 2020. I am not employed by them.
They are looking for participants for another survey. The requirements for this one are as follows:
HR positive / HER2 negative NOT currently taking Hormonal/Estrogen therapy but has taken in the past: 60-minute web assisted interview. They are seeking those diagnosed Stage IV within the last three years. It pays $175.
If you're interested, please private message me.
Kris
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Here is another cross-post.
RC Horowitz is looking for Stage IV triple negative participants for a paid survey. Just to reiterate, I have done surveys with this company since 2020, and I have a great relationship with them. I will place the information below. I do not work for them.
This is for those in the United States, diagnosed within the last three years. It will consist of journaling from 1/11 through 1/24 of 2023, and it is a total of a four-hour commitment over those two weeks. It will pay $350.
Please private message me, and I will let you know contact details.
Thank you for considering.
Kris
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lyadens-please see a doctor ASAP. 40 years ago, after I had my first daughter, I did have a breast lump. But it was just caused by the fact that I was breast-feeding. And it just went away on its own.
We are here for you!
Thanks, everyone for the kind words! Hoping to make it to 22 years of Stage 4 !!!
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Just popping in to say Happy New Year to all of my de novo friends. It’s been quite the year.
I hope 2023 is going to be a good one for us all.
I am going to be asleep, hopefully, at the midnight hour. I live in the country now, so although there are fireworks going off, there are far fewer than in the city.
Hugs to all of you.
Kris
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Just wanted to check in to wish De Novo sisters a happy and healthy New Year.
KBL: For the insomniacs (like me), I usually don't fall asleep until 2am (if I'm lucky). Rest easy, so jealous, LOL.
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Tinkerbell107, I've been on the insomniac track and would use Zquill to help me, but I chose to stop taking it, and, for some reason, I've been sleeping better lately. I don't know why. I think a lot has to do with the thinking we do, whether it's when we are going to sleep or when we wake in the middle of the night. My brain has been cooperating the last few days, so I have to take advantage and appreciate it.
I hope you were able to sleep last night.
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This sleep thing has me nuts. I wake up at 3 am and can't get back to sleep! That happened 2 nights ago and I ahd to take 2 naps during the day. Good thing that I have no life....
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I totally get it, Denny123. If I wake up between 1 and 3 and look at the time, I’m done for at least two hours. I’ve been sleeping halfway decent for the last few weeks. One thing I am trying is not looking at the time. I did this morning, and I slept from 10:30 to 4:15. I try not to get out of bed until at least 6. I was able to get myself back to sleep. It’s the having to pee in the middle of the night that wakes me.
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Re Insomnia.......my insomnia comes and goes. It has recently gotten worse since starting Xeloda. Not sure if it is because of the medication or a change in my sleep hygiene (a term I heard recently) and the onset of winter and grayer skies.
This summer I was following a protocol for resetting and controlling my circadian clock that I learned about from Dr. Seheult's MedCram lecture on YouTube - "Sunlight: Optimize Health and Immunity (Light therapy and Melatonin)" recorded Jan 21, 2022.
It's pretty simple to do....get out into the morning sunlight every day and let the light strike the back of your eyes for a few minutes (look towards the morning sun NOT directly at the sun). Dr Seheult explains how this helps control our circadian clock and he has other tips for improving sleep too.
I definitely think this morning routine helped improve my sleep, but unfortunately winter days in Wisconsin are often gray, and I've fallen out of the habit. I do take a low dose melatonin 1.5 mg Immediate Release/Extended Release which helps, but some nights I still wake around 3:00 am. I recently heard a functional medicine doctor recommend taking 2 days off every week from a melatonin supplement (5 days on - 2 days off). So I've started to do that.
I just noticed I probably shouldn't post on this thread as I'm not De Novo. It was the subject Insomnia that caught my attention. My apologies.
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weninwi-all are welcome. You are Stage 4, and that works.
I used to take Melatonin when I was on Kadcyla. It worked for about a year, then no longer. I keep reading that some ladies take 20mg of Melatonin, which is insane.
kbl-it's the 3 am pee problem for me too. And the week that I am on Capecitabine, I pee more often. And since I have the Philips life alert necklace, I have to be sure to put it on before I get out of bed.
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weninwi, you are welcome to post here, and I appreciate the information you've provided. I will try to look toward the sun in the morning.
As far as melatonin, I took it once, and that was enough for me. I had very vivid dreams that night. No thank you. Lol
Denny123, I was up this morning between 1:30 and 3:00. It's the first time in a while I couldn't get back to sleep quickly. I am on my on week of Xeloda.0 -
kbl...last night I woke at 12 and 3. And then finally up at 5. I need more sleep!
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kbl, I was just reading your original July 2020 post that started this thread. When I went for a second opinion at MSK last month, that doc felt sure the spot in my shoulder that moved me to stage 4 had been there since my original diagnosis. And the spinal met too. I went metastatic fairly soon after initial stage 1a BC. I guess it doesn’t change much for me at this point, but I do wonder how many de novo are missed as many early stagers are not scanned. I did read in one article that the practice of taking sentinel nodes only probably leads to a good amount of under diagnosis.
(and can very much relate to the sleep challenges. I’ve tried so many things!0 -
Sorry for the delay in response. I've had my grandson for four days, and he's kept me hopping. I'm feeling it, for sure. He's very active, so I'm definitely on the move when he's here. We went strawberry picking today. It was fun, but I must say that after four days, I'm exhausted. He is full of questions, which is awesome because he is learning so much.
Denny123, boy, I hope you sleep better tonight. I woke up two nights this week so far and was up for two hours each time. I have to admit, I was a tad grumpy today.
Believe60, I will never know the answer because the cancer has never been found in my breasts. It's sad that so many have the cancer staged lower, only to find out it's Stage IV right out of the gate. I'm sorry that happened for you. I hope you're tolerating the treatment. I was on Ibrance and Letrozole for two years, but some get many more years out of the targeted therapy.
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kbl...I did sleep well last night, TG.
Believe...so true. When I was dx'd in 2002, a spot was seen in my liver. I had 3 biopsies, all of which missed the spot. So it was assumed that it was just a lesion. It wasn't a lesion.
They took 37 nodes from my left and 18 from my right. 2 on each side were positive, but only micropically involved. So it was assumed that my BC had not spread. It did spread..
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Speaking of insomnia...here is a clinical trial I was matched with through MBCconnect.org
https://clinicaltrials.gov/ct2/show/NCT05233800
There was also a website link given to the Sleep Foundation's website regarding Cognitive Behavioral Therapy for insomnia
https://www.sleepfoundation.org/insomnia/treatment...
I won't be applying for this study because thankfully, my insomnia has resolved itself.
I did use melatonin supplements for a long time, some other supplements that helped me were HTP-5, Kava Kava and Valerian. Even though these are 'natural' and available over the counter, they can have side effects so please do not take this as medical advice.
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Denny123, so glad you slept. My husband and I are camping for our first time in our new RV. I have to say although the mattress was a little more hard, I slept pretty good. I did get up to pee a few times but pretty much fell right back to sleep. I told my husband at 4:00 I was ready to get up, as I went to bed on the early side, 8:30, and then I promptly fell right back to sleep until 7:00. Lol.
Thank you for the links. Olma61. I’ll check them out.
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