If you are not Stage IV but have questions, you may post here

ShetlandPony

Any new herbs, alcohol, or supplements, Rocket? Do you have any upper right quadrant pain if you press under your ribs or on your side? Maybe ask for an ultrasound or CT for peace of mind?

Rocket

The only thing I can even remotely fathom that could increase it would be Doxepin which I started two weeks prior to labwork. I was only taking a very little bit .6 ml. My doctor prescribed it for sleep. I was just taking that tiny dose at night before bed. It is metabolized in the liver, so I suppose it is possible. I had taken that medication a few years back and I don’t remember it ever increasing my liver function tests. I have not stopped or started taking anything new other than that one drug.

My doctor was supposed to call me on Friday with what we are going to do next regarding the increase in my labs. They never called. I guarantee they will be getting a call from me on Monday morning.

I never drink alcohol and never have. The only thing I drink is water. I keep myself hydrated and I exercise.

I’m not finding a lot on the web for all three of those values being increased. I have been vaccinated against hepatitis A and B. And I was tested for hep C months ago and it was normal. I am just praying it’s the medication. I have stopped taking it and will insist that they test my blood again. The waiting is what is hard. Thank you for responding

Rocket

I neglected to mention that I have no abdominal pain

Rambros

I hope your next text results come back lower, I know how horrible the anxiety can be. I’m December my ALT and AST were elevated (53 and 65). I had them retested (with a full liver specific panel) a month later and they were both 17. I was so worried the whole month in between and it ruined my Christmas. I was sick about 3 weeks before my December blood work (thought I had covid but tested negative) which I guess caused the problem. Have you been sick recently? Hope all goes well for you.

Rocket

About 6 weeks prior to the lab tests I had food poisoning and unreal diarrhea. Then about two weeks after that I began taking the Doxepin. Then I had the first set of labs which showed the elevated alk phos and ALT. After a couple of weeks labs were repeated and my levels of ALT and AST increased. The alk phos went down two points but still too high.

This stuff scares me! Why couldn’t the doctor or his nurse just call me back with a plan? It drives me crazy!

Thanks for sharing your experience with me.

Castigame

went thru two lifetime worth of beatings a few yrs ago. Asked for scan due to zingers in my chest area. Got a MRI of lumbar spine done Thursday. MrI report mentions stag 4 intial work up twice. I can recite every word in the finding section. It says benign, no mention of mass or suspicious or follow up. Degenerative disc disease multiple times. . The last line of report is no evidence of malignancy. Meeting with Onco on Monday. Hope and pray I don't hear stage4. I am freaking out.

jenjenl

Hi Ladies - I'm here to ask about liver mets. I'm having dull pain on my right upper side of abdomen for the last 3 days. It doesn't hurt to press on it and can hurt either standing or sitting. It comes and goes. I don't believe its swollen. I'm not seeing a pattern of pain based on eating. Of course this is happening in btwn jobs, although I do have cobra for 60 days.

Can you share your experiences with liver mets pain?

LW422

Mimi--I just saw your post and no recent update from you. I hope you didn't hear 'those words' at your meeting with the MO. Hugs.

jenjenl--I don't have liver mets but I did have similar pains and was sent for scans. They didn't find anything and never could say what caused the pain, which eventually went away. I hope someone will see your post who can offer more info, and good luck to you.

Merkmurf

Hi Ladies,

Thank you so much for creating this forum. Here is some background (not sure what will show below), ERPR + Her2- both boobs ILC stage 3a dmx did not get clear margins, IDC stage 1 right side. I had all the normal treatments and now I’m on arimidex and verzenio.

I had a bone scan last week which doc initially said it came back fine. Met with him yesterday and he said there was some inflammation in the area that they didn’t get clear margins. He is ordering a CT scan to be done in 6 months. He is also going to start pulling tumor markers.

Does anyone have a crystal ball? 😅 one one and I’m grateful that he is so proactive, on the other I wish I had more info. I am active duty and can retire in July 2023. I haven’t been planning on retiring yet, but if I’m stage 4…I’ll be forced to. I just want to know how to plan.

Can anyone relate? Does anyone have any insights? Why would he order tumor markers? Last time I asked him about tumor markers he said they were unnecessary and unreliable. (I’m glad he did order them! Just wondering why.

KBL

mekrmurf, I am de novo Stage IV ILC. It can be such a sneaky cancer. I think doing tumor markers as a baseline is a good idea. That way if they check them again, you can see what’s going on. They work for some and not for others. They do work for me. On a side note, PET and CT scans would have you believe I have no cancer anywhere, when it’s actually throughout all bone marrow and bones from skull to femurs and stomach. MRI is the only thing that shows the cancer in my spine. Endoscopy the only thing that shows it in my stomach. This is not meant to scare but for your knowledge. Please let us know what you decide.

Merkmurf

Thanks for your insights Kbl. I left the appointment happy and feeling good, so happy I have a proactive oncologist, then at about 8 pm I started to replay our conversations and got worried. In the end, I’ve accepted I need to be happy for each day I’m given.

We (me and my oncologist) are most worried about the dirty margins. I’m not sure how the spread will happen if it happens. Locally or distant. I’m tender in the area of the tumor (where they didn’t get clear margins), but that could be from rads. It’s hard to tell if something has changed or is lumpy because everything is lumpy there 🤣 everything just feels different, so I do t know what is “normal” anymore. I just want that crystal ball. Do I have 1 year or 20?

KBL

I totally understand where you’re coming from. It’s something, sadly, we think about every day, but I am feeling decent, so I accept each day I’m given with appreciation and even more so when I’m feeling okay. I’m sorry you’re having pain. Each pain brings us to that place we don’t want to be in our heads. After I started having the symptoms in my stomach, it took six months before we figured out what it was. The cancer has never been found in my breast, so I haven’t had any surgery.

Anx789

Hi Kbl, what wer the symptoms your were having in your stomach?

KBL

anx789, hi! In October of 2018, I started feeling full after just a few bites. I lost 17 pounds without trying in a matter of months. I went below my pre pregnancy weight of 30 years ago. I was nauseous every time I put something in my mouth. Thankfully, my primary told me to have an endoscopy. They found the cancer in biopsies in three parts of my stomach, the angularis, antrum, and body. To note, when the gastro took the biopsies, he literally said my stomach looked normal. He was completely shocked it came back cancer. Mine was a missed diagnosis from 2013, so I had six years with no meds. I was on Ibrance but switched to Xeloda when the not being able to eat and weight loss started again. I've been on it since September. Just had my yearly endoscopy. They only find the cancer in the stomach body right now. It's stable in my whole spine, including bone marrow. I’m still loaded with it there.

jenjenl

quick update - They performed a chest, abdomen and pelvis CT scan which came back normal. To be safe, they are ordering a bone scan too. Would a CT be able to see lesions?

KBL

jenjenl, I think CT scans do work much better for those with IDC. I have lobular, and CT doesn't pick up any of the cancer I have. I hope your pain is better. That’s great that nothing was found. It’s always perplexing when we have pain and don’t know why.

jenjenl

The pain is not better and I'm taking Tylenol regularly now. The bone scan is on Tues so I should know more on Wednesday. I don't have a good feeling. Sadly, to me the probability is more its mets than other back problems normal people have. We leave for Hawaii in 2 weeks for 2 weeks.

jenjenl

bone scan came back clear. I went to a spine specialist this week and he indicated there is something going on with my back and/or nerves. When he did a series of reflex tests, my body did not react. I'll have an MRI when I get back from Hawaii. Back pain is so painful.

KBL

Jenjen, I’m sorry you’re in pain. When we don’t have the answer as to why, it’s just so frustrating. I hope you can enjoy Hawaii

orangeflower

Is there anyone here who started out with hormone receptor positive, stage 1, lymph node negative breast cancer and went on to develop stage 4?

I feel like this has been asked somewhere on the boards before but I couldn't find any previous posts about this.