How are people with liver mets doing?

NicoleRod

Sandi..when I was diagnosed in March with Stage 4 Foundation One was done. It said it responds well to Ibrance... I don't know if she thinks Ibrance or Let...we just talked about Ibrance ..how would we even know? I am already on Faslodex....so thats out....:??

ShetlandPony

Nicole, hugs to you. We know about the fear. But hold on! Ibrance was your first treatment. I’ll put money on some chemo doing wonders for you.

NicoleRod

Shetland...here you are cheering me up...:( and look at what you are going through. I feel horrible to even be here venting with what you and Gumdoc are enduring but I thank you for your caring.

Whats next do I ask for another biopsy and Foundation 1 ?? DO I ask for them to check the HER2 status?? I just don't know....what to ask and what to do...

ShetlandPony

Lol, Nicole, I was just marveling at another BCO sister who just sent me encouragement as she waits for surgery for two broken hips. Vent away! There’s no hierarchy here. All of us have real pain and/or fear, and we all help each other.

Anewbreath

Shetland-glad you are getting answers and praying you begin healing immediately!

Nicole- I feel your sadness in your post and I’m so sorry. Hugs to you💞. Take time to breath and your MO will be coming up with something to wipe those mets out. My first treatment after diagnosis with mets was Carbo/taxol and was very doable. Feel free to reach out with questions whenyou are ready.

candy-678

Nicole- I just gasped when I read your post. I am so sorry. I don't know what advise to give. I too wonder do we retest/rebiopsy F1 or HER2 status with progression. I am not there yet. But I am 2 years in and wonder when it will happen with me. I have a scan due in a couple of weeks and who knows. I guess I would advise you review Bestbirds Guide. Maybe check with Cure-ious. She seems so knowledgeable. Good you are posting here for advise. Do you trust your MO? 2nd opinion on next treatment plan?? I will pray for you.

Rosie24

Hugs to you Nicole. So many of us here are in your pocket as you have your pet scan and find out your next treatment. I hope you can feel the support here. Wrapping you up in a warm blanket

NicoleRod

Thank you for the prayers I need them. Believe it or not I really like this new MO because she is very attentive I mean she called me at home tonight and the other night. I did ask her if she would please consult with my MO at Columbia that I just moved away from last month..and she said she would but after the PET so we know what we are dealing with so I guess that is good. Holli mentioned in the Ibrance thread to ask for a biopsy so I am going to do that to see if the tumor has changed...her's did.

candy-678

Nicole--- I think a re-biopsy would be good. If change in stats then can change treatment plan. Sounds like your MO is good- attentive. This is the place to get some ideas for the next step. Breathe. Make notes. And talk them out with your MO.

ShetlandPony

Hmm, so you’re on Ibrance, letrozole, and Faslodex? The other hormonal therapies would be Afinitor + Aromasin, or maybe one of the newer CDK drugs like Piqray or Verzenio with an anti-estrogen drug. But I would not be surprised if your oncologist suspects the cancer to be resistant to hormonal therapy and suggests a chemo such as Xeloda or Taxol. These decisions are where you need the expertise of your oncologist and possibly your second-opinion oncologist. But the bottom line is there are many possible treatments and there should be one that will work for you. As far as a new biopsy, your onc will have to say whether it makes sense to do one again so soon, whether the cancer could have changed enough. With grade 3, maybe?

NicoleRod

Thank you Shetland...yes on the phone when I said well what options are we talking are left...chemo?? She said "well there is chemo but there also is other hormonal drugs but lets get the PET and see what it shows."..I was told when I first diagnosed by some other BC ladies that the only good thing (if ya wanna call it that) about Grade 3 cancers is that they respond well to chemo... I am just so afraid of chemo. I will do it..but I am afraid my body will give out. I am sure that is a normal fear everyone has...I am no exception...I am just sharing. I do feel confident with her opinion and especially if my MO from Columbia weighs in (I did email her tonight as well)

ShetlandPony

Ok good, you have two good oncologists on the case. Next step is the scan. If you need to do chemo, they will work with you to find the right dose, deal with any side effects, etc. They know this is a marathon, not a sprint, and will keep your quality of life in mind. Chemo is just a word. I had great success with extract of Yew (Taxol) and continued teaching my dance classes while on it. As they say, everyone is different, but chances are you will do just fine.

NicoleRod

I should have mentironed but my biggest fear of all was that she was concerned why the bilirubin is high and that's when she said PET scan so I mean if a tumor grew in 1 month in the liver God only knows where else there might be more

pboi

Nicole,

I read here, but don't post often. But I felt compelled to reply when I saw you mention your fear of chemo. I had the same fears last year when I was diagnosed with extensive liver mets. I have been on Taxol for 13 months now, and while I do have some side effects, some fatigue, little nausea, and a little neuropathy it is all very manageable. I'm able to live a pretty normal life. This morning I went on a 2.5 mile jog, and I am by no means a runner, it was a slow jog : ) Like Shetland pointed out, yes while everyone tolerates it differently, chances are that you too will do fine on it, and chemo can be very effective in knocking back those mets! Prayers that your next treatment will be very successful for you.

PB

NicoleRod

pb....you made me cry..a good cry the fact that you and all the ladies here have reached out to me and actually can feel my tears and feel my fears and anger and ..well fears....lol did I mention fears..lol *through the tears* just makes me feel so loved in a way that I just cannot explain...I just feel so supported my heart is overwhelmed. Thank you .

BSandra

Dear Nicole, these are difficult moments and we are with you. We all know how much strength is needed to endure it all, and especially... waiting for decisions. If your PET is good (which I am sure will be!), for me you sound like oligo-metastatic, and for this condition local treatments should be considered (you said you have 4 confined lesions in the liver - if nowhere else, you are oligometastatic, I hope doctors see you like this, and you must be treated with curative intent). For sure they also have to find systemic treatment that will work. Don't be afraid of chemo. They are newer and easier compared to what was 30 years ago (especially with support options that did not existed then). My wife did 18 Docetaxels (standard is 6 or 8, considered a harsh chemo), and she's here, and she's pretty well... Don't even think about 2 years, think of 10 at least. And after these 10, let's discuss another 10. No false promises, anything can happen, but anything also means you can manage it all very well for years and years. At first things might be overwhelming, I know, but then you'll see there are many options. With all my heart, Saulius

Kattysmith

NicoleRod, I'm so sorry and hope the next tx is a long-term charm.

Shetland, you have been through the mill and then some. I hope you get everything cleared up, so you can go home soon. Hospitals suck!

Katty

NicoleRod

Sualius..thank you.. I am not Oligo...I don't believe I am because I have a Bone Met in the Hip and the Sacrum... I am going to ask about local treatment though.

NicoleRod

Ladies..PET question... every single PET I have had in NY I had to FAST and drink stuff and they inject something. When I called VCU to make the appointment today (which is Friday--prayers please) they said FAST but they do not have you drink anything there..they only inject you ??? I said are you sure?? The lady said yes? Is she wrong?

candy-678

Nicole- I have only had 1 PET so I am no expert, but mine I fasted and they injected. No drink. Other chime in to verify. Praying for Friday.

BevJen

Hopkins protocol is fast, injection when you get there, and drink when you get there.

Bev

Frisky

MSK rules: fast for 6 hours prior to the PET, but they let me drink black coffee while waiting.

Kattysmith

Most of my PETS were with fasting and injection only, but I did have a couple with contrast also. The technician/ engineer , who was also a co-designer of one of the new generation PET machines at MD Anderson , told me that some doctors request contrast because they felt they could read the scans easier.

NicoleRod

Thanks for that info Katy that is interesting, The nurse just called me and confirmed no solution to drink..so its just the injection.

Nkb

Nicole- mine have been: no exercise for 2 days prior, then 24 hours of super low Carbs one day before, basically meat, eggs, nuts and green veggies, then fast for 6 hours prior. They inject a nuclear glucose solution and then a dark room for an hour, no phone, no music , no reading, no DH. Then after an hour pee and have the scan. The scan takes about 20 minutes. ( I carb load afterwards- but, not required).

Good luck!

Shetland- I hope you are feeling better. I don’t like hospitals at all. I feel uncomfortable so I hope you are home soon and feeling renewed.

ShetlandPony

I escaped the hospital last night after six days in captivity!

BevJen

Shetland,

Yay! Good for you. Hope you are feeling better and that they found the right antibiotic solution.

ShetlandPony

The antibiotic appears to be working as the pain is almost gone and the radiologist could not see the abscesswell or at all on ultrasound. So I got out of a biopsy. The med is IV only so a nurse will be coming by daily to administer through my accessed port. I’m afraid I may be expected to learn to do it.

NicoleRod

Shetland YAY you are out and the antibiotic is working!!!! So happy for you!

JFL

Nicole, I am so sorry to hear about your scan results. I hope that once you have a chance to get the scans and develop a plan for your next line of treatment, you will feel a bit better. No, the fear never goes away. As someone who has progressed in the liver numerous times, I know that awful feeling. However, it does improve with a good plan in place and an effective treatment underway. You have a chance to start with a new slate now and many options for powerful treatments to knock back those liver mets for a good long run. Like the others said, most PET-CTs do the CT portion without contrast. When done with contrast, the lesions display better in the CT portion of the PET-CT. You must have been receiving PET-CTs with contrast at your previous treatment center, which would explain why you had to swallow something. I haven't had a PET-CT with contrast but have always wanted one.

Shetland, glad to hear you are out of the hospital and that your abscess seems to be improving. What a relief. Wow, I am surprised they may have you access your own port. That seems more invasive than giving oneself an injection in one's belly fat layer or even in the muscle.