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After 9 years ... I have been released from Herceptin!
Hello everyone I have not posted in a while but wanted to give an update. My oncologist who has treated me for the last 9 1/2 years abruptly resigned last month. I decided to get another opinion at the University of Michigan and today met with this oncologist. She is the head of clinical research there and I was very…
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TNBC in supraclavicular lymph nodes *only*??
Hi All, My wife recently got NED from stage 4 TNBC that was in her spine. However, her most recent PET showed 3 lymph nodes on either side of her neck with activity, and a biopsy confirmed cancer. What is baffling us is that there's no sign of cancer elsewhere. How does cancer get into the lymph nodes without a tumour…
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CA 27-29 testing
My CA 27-29 keeps on going up. When I was first diagnosed with bc 3 yrs ago it was 65. Now that I have mets it's 880. My Onco told me not to get hung up on the numbers but how could I not? He said it could be inflammation. I've had very severe gastritis and GERD lately. Could that be it? I feel fine. Going for a PET next…
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Anemia from inflammation
I have mets to my bones. I've got severe anemia from it. My hemoglobin is 7.7. My Dr just gave me my first shot of Aranesp. They won't give a transfusion until my hemoglobin is under 7. Does Aranesp work and when? I can't even get the strength to walk to the bathroom.
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"I Could Get Hit By A Bus" Comments
It still amazes me how people are insensitive when you tell them that your cancer is terminal and cannot be cured. After all these years, I still have acquaintances say to me "We all never know when we will die." "I could get hit by a bus tomorrow". Usually the person goes on their merry way, and I am still left with no…
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Colitis
I've had a lot of diarrhea/stomach pain/cramping/nausea and i thought it was due to Verzenio. It's been getting worse so I had an appointment with a gastroenterologist. He did an endoscopy & colonoscopy and it turns out that it's a flare up of collagenous gastritis and colitis. I have inflammation from one end to the…
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Determining progression
Hello, hope you would response to this question: when does your oncologist decide the cancer has progressed from current regimen? 1- A definitive trend in rising tumour's marker such as Ca27.29 or Ca15-3. Note that there are 7-10 benign causes of a jump in marker, although I haven't read any paper with respect to benign…
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INSANE Itchy skin-rash-I need relief
my rash started on Ibrance. I stopped Ibrance now and thought it would go away but it’s not. It started on my upper back and left arm. Stopped there and when to right arm. Stopped there and now it’s on my neck and upper chest. It’s the worst here. So itchy I look like I had radiation. I need to scratch!! I’ve tried…
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Symptoms of lung Mets
Hello everyone; I have Mets to my spine, which according to my last scan we “resolved”. I’ve had this persistent cough lately,with some pain on my upper back and I’m really fearing the worse. There’s no pain when I breath in and out,but my chest feels weird. I had Covid last year and I felt the same way. I don’t think this…
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In Memorium: Lita57
This is Lita's daughter Mica. It is with both relief and sadness that I must report that yesterday morning Lita went home to be with her Lord and Savior. Her long fought cancer battle finally came to a peaceful end surrounded by family and friends. This site was a source of strength and community for my mother, especially…
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What just happend?
I was diagnosed with Invasive lobular carcinoma that metastasized to the lymph nodes eight months ago. I was scheduled for a bilateral mastectomy with nipple sparing reconstruction placement of expanders same day and follow up surgery placing silicone implants surrounded by fatty tissues from my belly. It was agreed to by…
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Ra-223 Clinical Trial
Is anyone in the Ra-223 (radium) clinical trial for bone mets? If so, what have been your results? Any side effects?
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Diagnosed with bone mets
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Let’s gripe!
It’s been one of those days and I’m in the “this stage iv stuff sucks” frame of mind. I’m tired of all of the bloodwork; I’m tired of the monthly Zoladex shots; I’m tired of the constant fatigue; I’m tired of living in 6-month segments in between scans; I’m sick and tired of worrying that while I feel good now, when is it…
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Anyone with Rib mets get pain in back - What do you do?
Hi, I have bone mets and noticed recently the right side in the back and front hurt - like it gets fatigues and then hurts, if I rest with a heating pad its better, but hurts if I am doing things. Does anyone experience and how do you manage it? It can be limiting.
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Swollen glands - Ibrance -Letrozole
hi It's my week off of Ibrance can't turn my head, swallow without pain my jaw also hurts.99.7 temp , chills. Is this a side effect? Anyone have this?
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How many are Stage Iv Lobular?
I'm just checking to see how many are Stage IV Lobular? How long and how are you doing? It's a bit different than ductal.it seems Lobular is harder to find on scans. I’m new so looking to get any advice and tips. TIA
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Poll - How old were you when dx with BC
I am just curious to find out how old all of you were when first being dx'ed with BC (I don't need to know the year, I hate math so I wouldn't try to figure out how old you are now anyway). It just bothers me that they are still promoting waiting until you are 40 to get a mammo. I was 29 when I was first dx with BC, 34…
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De Novo Oligometastic- What treatments have you chosen?
Hi all! I hope there is not already a forum for this. If there is, I couldn't find it! I am newly diagnosed (June 2021) and oligometastic- 1 met on my L4. I also have 3 positive nodes. I am currently on Faslodex and Kisqali. ER+/PR+ HER-. I had my ovaries removed a month ago. I am trying to research the choices of staying…
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Radiation for stage 4 very painful
On the eve of being 10 years cancer free after Stage 2 lobular I am now joining you in the fight of my life. I am on Ibrance and letrozole and started radiation on my back and hip this week. There are innumerous tumors in my spine with the biggest around L2-L4. When I got home yesterday after radiation I thought I would…
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Poll on Mets/Just curious?
I am just curious on how many members have mets? And to what location on the body? Thanks in advance for participating. Rebecca
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Quitting work in my 40's?
Hello all, apologies in advance for such a long post, I was diagnosed stage III back in 2014 at age 34, and had a contralateral axillary recurrence in 2017. That recurrence was considered stage IV since it was on the opposite side as my original cancer (and genetic testing showed that it was almost definitely the same…
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Abraxane (chemotherapy)
I couldn’t find a thread that pertains just to Abraxane, so I started this one. I am on Abraxane since September 2021 (after a horrible 3 months on Piqray that didn’t work). I seem to mostly be tolerating it well, however with bouts of dizziness, constant clogged ears, occasional eye flashes and of course fatigue. Just…
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CT Aid In Dying Bill - Whats Your Take?
I am starting this thread without much research because I just learned that Connecticut is dealing with an Aid In Dying bill. I also just went on the DeathWithDignity.org website and signed a petition to help get the bill through. Right now, I'm not six months away from the end, or am I? Having Stage 4 Denovo since 2008, I…
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Fluctuating Alkaline Phosphatase
My ALP is within normal limits, 105 (40-156), but it fluctuates up and down in the normal range consistently. Last month it was 70 and the month before that it was 100. Is this normal? Every time anything heads in the wrong direction I freak out. You’d think I’d be used to this crap by now. Jackie
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Switching between chemo and hormonals - is this possible?
Hi everyone, would greatly appreciate some advice and thank you for listening and all your expertise. I visit every day, but don’t really post. I’m currently on abraxane, (about to start my 5th cycle)due to go a couple more cycles. I’m wondering if it is possible to be put back on hormonals after this finishes? I have only…
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Both HER2+ and HER2-
Hello everyone! I just received news that I have been taken off my clinical trial that was due to start soon, as the trial lab tested the segment of my tumor as HER2-, whereas my cancer center lab tested it as HER2+. Both labs designated it ER/PR+ still. I am really confused and it's difficult to find information on having…
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Ibrance/Exemestane
I just started Ibrance/Exemestane (only the first month) when is it typical to see results? Is it after 3 months? Thank you, keeping fingers crossed here.
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New De Novo diagnosis
I was just diagnosed yesterday with de novo MBC. The PET scan showed "1. large hypermetabolic left breast mass, consistent with invasive ductal carcinoma. Regional nodal metastatic disease to the left axilla. 2. Numerous lyctic osseous metastases. Many of these are small, but a lesion in the L2 vertebral body show…
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Stage IV MBC with Type 2 Diabetes
I was diagnosed May 21, 2021 with metastatic breast cancer that has spread to my chest. In addition, I have type 2 diabetes. I've noticed that since starting iBrance and Letrozole my blood sugars are running high. I'm curious if anyone else in the same situation has experienced this as well. I'm also in a clinical trial,…