How are people with liver mets doing?
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Robin- pneumonitis sound rough. You must feel so ripped off by that flipping trial. I don't blame you for feeling apprehensive about changing treatments. I dread the whole hair issue, which I know will be revisited in my future. Not sure I'll have the courage or patience enough for cold caps.
Kaayborg-thinking of you! Visions of increased RBCs dancing in my head!
Kaylynne-I live in Maine- a far cry from OKC. My sister lived there for a while as her husband was in the airforce. I salute you for working. I retired when I was diagnosed with MBC at age 58. I get SSDI supplemented with my 401K. DH is older and had retired previously. We also have military health insurance. I am very fortunate in this. Some gals have combined SSDI with long term disability, if that helps.
Sending love and strength to all of my MBC sisters. MJH
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Robin- pneumonitis sound rough. You must feel so ripped off by that flipping trial. I don't blame you for feeling apprehensive about changing treatments. I dread the whole hair issue, which I know will be revisited in my future. Not sure I'll have the courage or patience enough for cold caps.
Kaayborg-thinking of you! Visions of increased RBCs dancing in my head!
Kaylynne-I live in Maine- a far cry from OKC. My sister lived there for a while as her husband was in the airforce. I salute you for working. I retired when I was diagnosed with MBC at age 58. I get SSDI supplemented with my 401K. DH is older and had retired previously. We also have military health insurance. I am very fortunate in this. Some gals have combined SSDI with long term disability, if that helps.
Sending love and strength to all of my MBC sisters. MJH
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Hi ladies,
After 5 1/2 mos on A-train and despite lowest TMs in nearly a year, there was progression in bone (skull met and dura) that requires 3 weeks of head radiation in a horrible Jason/Halloween mask bolted down over my face (xanax stat) and liver SUV uptake is now on both sides - still micro mets. I will be moving to Xeloda asap - likely during rads. Otherwise stable. Thank god it is not in my brain. Expecting to do well on xeloda as many ladies get long runs on it. Any xeloda advice? I'm having a spine MRI on Wed. to rule out any C cells sneaking around, then see the radiologist on Friday. I will start the head microwave soon and worst news is that since it's dura, the rays hit my hair folicles and there goes all the hair I saved on cold caps.
I do not like this trespasser at all. Z, SP, Cure-ious - any thoughts? Onc said too small/early for TACE or Y90. Just xeloda. If the skull/dura met was not present, we would have moved to xeloda anyway. X Team here I come!
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lalady- PM me. I was on Xeloda for 5 years. It kept me NED fir almost all of these 5 years.
There is a great Xeloda thread on these boards. You should look it up. Great people, great advise.
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Candy, I am sure I do annoy my MO from time to time. However, he is very open and patient with me and is great at letting me be part of my care. However, I did have to push him for nearly a year to get him on fully on board with my scan preference. He initially would do it one time and try to go back to his initial recommendation. Now, he doesn't question it so long as my insurance keeps covering PETS. My prior MO was the opposite and everything bruised his ego. If I find myself worrying about what my MO or any of the staff think of me, I remind myself I have Stage 4 BC and the stakes are much higher for me than for them. This is my life. They clock out at the end of the day and go home to their families while I go home and still have Stage 4 BC.
LA, what a punch in the gut about losing an area of hair due to the rads. Is it something the halo would cover? That mask will kick the jaw mets back into submission. Even if you have a small amount of activity in the liver, the fact that you are still dealing with micromets is great. Xeloda is such a great med. It is one that can work for years.
Grannax, my report had the same thing with ERBB2. It was thing only item listed that was a negative. Everything else mentioned was because it was a mutation/amplification. Since it is associated with HER2, something that is always tested on basic tumor profiling, perhaps they list it here and always give the results for ERBB2 (even if negative).
Z, thanks for the play by play of your SBRT experience. It is very helpful to have that info.
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Hi all-
I’ve had MBC for over 4 years now and my mets are in my stomach/peritoneal cavity. In the last few weeks I’ve been feeling pressure, no pain, directly under my rib cage on the mid to right side, which I mostly notice when I’m sitting up in bed iron the couch (partially lying down.) I’m concerned about it spreading next to my liver and it’s been 6 months since I’ve had a CT scan. I’ll see my MO this week but I was wondering what your symptoms were, if any, when you were diagnosed with liver mets. My bloodwork for liver enzymes has been normal.
Thanks so much,
Southern
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Southern survivor: I found widespread liver mets by accident from CT scan of lungs. Blood work showed elevation of liver enzymes, but not T Bil. No pain in liver area.
Thinking of you..new pains are always scarey.
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Z: I just had whole brain radiation and have a coughing fit from swallowing the wrong way one time. It was hell. For sinuses the only thing I thought of was a netipot right before. Might help. Might hurt. by may be worth a shot since you tried everything else.
Candy: I am that girl. I understand that the bone mets are certainly less important than the liver mets (I have both too) but I say that I need to know. I have weird pain Here, here and here and I NEED TO KNOW. I apologize, I say I know I'm a pain but I insist I need to know.
Southern Survivor: Get a scan. Google the symptoms you need to say you have to get one. I have pushed for scans 'too soon' and gotten bad news. You need the bad news sooner rather than later. AND it might be even be good news. Your onc does not care about your life as much as you do. Liver enzymes are not always definitive and they weren't for me.
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Thanks, Sandibeach and incognitomom, for the input.
I will put the CT scan on the list to talk to my MO about at my appointment on Wednesday. Shouldn’t be a problem to get one the following week. Then the scanxiety will start.....
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Southernsurvivor-
I agree with the other posts. You need a CT scan. I found my liver mets by accident- a CT for a blood clot. My liver enzymes was, and still are, normal. I did not have any pain or other symptoms there was anything wrong. Praying yours will be good news.
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JFL and incogintomom--
Amen. We can understand each other. I hate I am in this Stage 4 club, but love I found this site of women that truly understand.
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Ok Ladies. I have yet another question. Bear with me. I bombard this site with questions.
So, I have mets to liver and bone. Diagnosed in Sept 2017 so I am fairly new at this. Was diagnosed with CT of abdomen and I had a PET scan of body and MRI of brain in Sept to get a baseline. My MO states his protocol is CT every 3 months. He has not said to do PET or MRI brain again. But how do you all check for OTHER mets?? Such as, God forbid, traveling to lung, brain, etc. I know the CT would see the lungs along with the liver, but how about the brain. Do we not routinely check unless symptoms occur?
Can the liver lesions be controlled on the meds, but new sites appear elsewhere?? If so, and we check only the CT and see no change in the liver would we be under false impression cancer is controlled when it is not?
Sorry, I really need to ask my MO these questions.
Do any of you feel as insecure and unsure as I do??
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I had rads to sternum and rads to the liver as well as my first Zometa infusion and Faslodex shots at the Mayo Clinic in Rochester on Friday. Anxious to get back home to Los Alamos, I had booked the first flight out Saturday morning. I left for the airport at the onset of severe flu-like symptoms. The primary intent of two of the four treatments is an immune response. When my RO called Saturday PM, he was thrilled to hear I was feeling miserable ... "No Tylenol or Advil, you don't want to suppress the immune response!" I knew that. I hadn't taken any.
As a result, the walk from Terminal D to Terminal A during the transfer at Dallas was the longest walk of my life. By that time I had a fever. I found a random wheelchair near my arrival gate. I needed it to stabilize myself. I was also too weak to carry my bags. Interestingly, luggage carts are not allowed on elevators but wheelchairs are, even if they are being used as luggage carts. There are are many elevators on the road from Terminal D to Terminal A in DFW. It is clear to me that an angel intervened with a serendipitous wheelchair.
You are thinking that I should have asked for assistance. I knew that but I did not have the brain function to request assistance. I landed in ABQ at 3pm, checked into a hotel, and shook and drank electrolyte sports drinks until this morning. Eventually things improved enough that I could slowly drive, with lots of stops, 100 miles to my home.
36 hours after the treatments, the flu symptoms are mostly gone. I am tired but no fever or chills. In terms of treatment outcomes I would have preferred a higher fever and a longer period of flu symptoms but I'll take what I can get. We'll find out with TM's and scans if it was a reaction to the drugs or an immune response that took out some mets. In any case, I am home with my cats and my family and doing much better.
LALady!!. Holy Crapitoa!!! No way. I am devastated to emerge from my fevered state and find you have progressed on Abraxane. Here are some initial thoughts. I really don't think the skull/dura mets are a big deal. My RO at Mayo said that the treatment he did to my sternum is effective 99% of the time. I would, however, get a second opinion at a facility that does proton beam therapy, especially for a met on the surface of the body with a very sensitive organ behind it (The Brain). Proton beams stop (somehow, magically) right at the met. They don't pass through the body. SBRT is a higher dose of radiation per treatment, but less treatments. I am wondering if SBRT would work on a skull met with proton therapy. Something to ask about.
Facilities that don't have proton beams don't suggest proton therapy. It doesn't bring them business. You've gotta get to a facility with a proton beam. One of the first best/facilities in the country is in Loma Linda. I was extremely impressed with the Mayo RO group and my radiation oncologist at Mayo, Dr. Sean Park. He is one of the rare physicians I would never second guess. Brilliant. But Loma Linda and Mayo are in the same league, and it's right there.
The mask is not a big deal with a sedative and clear sinuses. I would do it again in a minute. I would do the mask 15, 30 times if I had to, now that I know what is involved and how to prepare. I had bad luck with post-nasal drip. I also get very frightened in a hospital environment and I don't ask enough questions about what to expect. My brain shuts down. But with SBRT I only needed one treatment. Typically SBRT is 1-3 treatments. My main concern with 10-15 treatments is taking Ativan every day during waking hours. You will be a zombie for 3 weeks.
The other problem with photons is that you can't repeat them as many times as proton therapy. My RO's thinking is that we'll do 1 SBRT treatment to the sternum and check in 3 months. If I find myself in the 1% that doesn't get the met completely treated on the first treatment, we'll do it again. You can repeat proton therapy may more times. We're going to be zapping mets for many years into the future, so we have to be very concerned about the amount of radiation we get.
I don't know much about Xeloda except that many people respond for a very long time. I expect you to be in that group. The plan sounds solid to me.
Candy - can you fill in your diagnosis and treatment plan? Go to My Profile in the upper right. You also have to go settings in the menu on the left to make it public. It helps us to have context for your questions.
I was diagnosed 2 years ago and I have never had a scan of my brain until last week. It depends on the type of cancer whether that is likely or not. It depends on your diagnosis whether you need brain scans regularly, but most people don't. You do want a full knees to nose scan regularly. They don't generally do MRIs knees to nose because it is a very very long time in the machine and expensive. As a monitoring tool, MRI's have some weaknesses since they show size but not activity. You get similar information for less cost and time in the machine with CT with contrast, if you are monitoring for size and presence of tumors you'll get a nose to toes CT with contrast. PET scans find activity, which is important since tumors can wake up without growing. Many doctors just order PET scans. It makes sense since we're really only worried about activity. You get very little radiation from a PET, close to zero (what you get from an MRI). Monitoring with PET is the Mayo clinic protocol, and they are good.
In my case the PET scan missed progression ... somehow the tumors took over 20% of my liver without being hot in a PET scan. I ask for a nose to toes PET and an MRI of my liver. I would also agree to a PET/CT with contrast. PET scans are done with CT's but, if it is just a PET scan, the CT pieces is without contrast and very low dose and low resolution. The purpose of the CT in regular PET scan is to orient the PET results in space, not for diagnosis. You have to ask for a PET/CT with contrast if you want to get a report the evaluates both activity and size.
If your doctors are recommending a nose to toes CT with contrast and a bone scan, that is another standard and well supported protocol.
The advice on scanning method varies a lot because the different scanning methods have different sensitivities. It depends what you are looking for. The thing to consider is that you will always have cancer. What you are looking for is change.
>Z<
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Laladay was so good for a while no? Wow, so you have plan B? How are you feeling? Xeloda is a good tx. Gotta watch your blood count. So sorry about the hair issues, you worked so hard to protect it.
Candy-678 I don't know if we could answer with total certainty, one might say different docs order different scans. But just a thought, of course Onco is worried about the liver, so are you, but having active mets in the bones as much is not a priority it cannot be ignored. There are many discussions which scans are better, for some reason bone scans don't always show active mets. Pet scans are more reliable I think. You could say you hear so many stories you'd like to be more aggressive about it. Most MO's I think only want to order scans for the brain if there are complaints. In my DD case, when her mets started going crazy I got advice from BCO caring gals, that she should insist on MRI and she did and lo and behold she had already mets to the Dura. She did have then the first rads to the area then.
Granna it's a dilemma, if you feel comfortable asking straight out would help you understand what MO's thought process is. Dani has ERBB2 ESR1 the whole thing and many more, and nothing takes for her. Go figure. Abraxane/Halevan Carbo/Gemazar, afinitor, you name it, she's had it, all the new ones also aside from Immunotherapy. Even Herceptin did not get her to a decent place. Herceptin/TDM1/ Perjeta just go through it all. Very weird.
Zar what an incredible force you are. Well done. So sorry it was a rough go for a while, but you showed C who is the Boss! WOW what an incredible story. And you do all this on your own?? How did you do it? Love your explanation about the scans. You know we are always debating this over here. I always wonder if it's the dcos covering themselves with the Insurance companies, or they really believe what's best for the person.Is there anyone else out there that takes control of their own situation as yourself?? Just too incredible.
JFL you are so right that you get to stay with the trespasser. They are in this office tom and then one day they are somewhere else.
Hi Southern sorry to see you here. You are always so helpful, I haven't gone to that thread, my energy is not the same. Dani did not have elevated enzymes until much later, but the liver mets grew exponentially in no time, so why not have scans and then you'll know where you are at.
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Fulvestrant. Z I see you are on this. After reading F1 report it sounds like it might be a good TX with Ibrance, for me if I progress on IL. What are the SE. MOMatt has Dani had this one?
I read about it in regard to ESR1 alteration.
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LA, did you and your MO talk about the possibility that the cooling caps caused the skull met/dura met? I had always heard warnings that anyone with mets on the skull or skin on the head should not use cooling caps as they essentially prevent the Abraxane (or whatever other chemo one is taking) from treating the area . . . maybe it wasn't actually Abraxane that failed . . . . ?
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Grannax I am on fulvestrant with Ibrance since August. For me the main side effects are hot flashes ((more than I had with anastrozole and joint pain which I had with prior treatment. My nurses have been good about warming it before shots and I go walking after to try and get it moving through my body. I may be having a bit more reaction from my Thursday injection as I’ve had irritable bowel issues and this evening felt nauseous. But could be from last days of Ibrance cycle, something I ate or flu, hard to tell.
Southern I didn’t and still don’t have elevated liver enzymes. My liver mets were discovered by chance on a chest CT done because of pain on my left side and I had no symptoms.
Lalady so sorry to hear about you progression. How frustrating to be facing hair loss after all you did to preserve it with cold caps.
My MO is doing 3 month follow ups with a chest CT and MRI’s with contrast of abdomen and pelvis. My original bone scan was clear and the plan was for another in 12 months unless I have symptoms. My insurance denied her original request for a PET scan and she now says the MRI’s are better for follow up. I did not have a brain scan and she said that should be done if I have any symptoms.
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Yes Grannax she had it a while ago, and MO said she is resistant to Hormonals. But then at the end of last year she had it in combination with Neratinib - did nothing for her.
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Also posting to other threads
I received a PM from Aurora (Auroaya) today. She wanted me to pass along a message from her. As some of you know, she recently had progression to her brain, and she has not had a good response to treatment. Her MBC continues to spread. It has become difficult for her to manage by herself, and she is meeting with hospice tomorrow. Although she hasn't posted here as much lately, I know that many of youwill remember her kind, encouraging, supportive posts. Please keep her in your prayers.
Hugs and prayers from, Lynne
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Robin - I do hope the pneumonitis is cleared by now. I was through radiation in Spring and got pneumonitis which lasted for months. What got me is you said your MO gave you two kinds of antibiotics plus 5 days of prednisone. My MO and RO did not. I have a bad reaction to steroids, to say the least. And since it was pneumonitis and not pneumonia, I was not given antibiotics at all. augh!!!!!! I have left them behind so will not revisit and stress but augh!!!!!!! That said it was horrible, the coughing that doesn't end, yes it goes on and on my friend, somebody started doing and ......... i forget the rest of the words except the end which doesn't end.
Had to jump 3 pages to get to the last post, missed a lot. I will read more later. Palliative care nurse has arrived.
Diane
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Thank you Lynne - Aurora is in my thoughts and my heart. I am so sorry to hear this.
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thank you Lynne, praying for Aurora
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Lynne thank you so much. She is such a nice person. Please let her know we are here with her and for her.
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hi ladies, After 9 months stable on ibrance/faslodex liver mets have been confirmed on PET. They are ill defined defuse areas. I feel good and had no symptoms. Bone is stable. I was firing lots if questions about y90 and ablation but he said systemic treatment. Possibly weekly taxol. They are going to do liver biopsy and liver specialist will discuss options with him. He said just because people do other options doesn't mean it's right not in an arrogant way. He said they dont usually do ablation if there is disease anywhere else? Maybe I have too many tiny dots to target? Has anyone had success on weekly taxol? Are diffuse much worse that actual tumours. Couldnt be seen on mri or ct with contrast, just looked shadowy. Pet picked up activity
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Lynne- thank you. The news about Aurora just makes me so sad to hear. Please tell her I am praying for her.
Babs
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Lillymillie. So sorry to hear about liver mets.😢 I don't know how you'll get answers to all your questions about y90, unless you get an evaluation from an interventional radiologist who specializes in this procedure. My mets were well defined, not diffuse. I do know that you can have y90 even if you have mets in other areas. I have mets in lung and chest.
But, it does sound like your MO is going to consult with liver specialist. That's good. I'm sure there are some situations when y90 is not better than starting systemic treatment, at least for now.
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Lynne, I also responded on the Abraxane post. This is so hard to hear about Aurora and she is in my thoughts and prayers.
Lilly, I also have a lot of diffuse mets and had wondered about whether that will be an issue for Y90. I know it can be done with more widespread disease (larger number of tumors)but am hoping it works with diffuse mets as well. I haven’t received an answer on that yet.
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I have a question regarding skin mets. Does anyone have this and can you explain how it looked or started. I have an area on my forearm that about a week ago had several bumps and was itching like crazy. The next day the area was red, dark brownish/red, and hurt like the dickens. I was very concerned that is might be cellulitis but none of the usually symptoms. The swelling has gone down but it has dry crusty like patches. Looks a bit like the area around the original surgical site that ironically gets worse when my treatments fail. Worried that this might be skin mets. Don't see the doctor until Feb. 22nd but my tumor makers have dropped down into the normal range and the CT scans I had last week show stable disease. Maybe I am just be hyper sensitive.
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where do new threads show up? I'm trying to start one on Genomics Alterations Testing. I submitted it but don't see it?
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If you assigned it to the Stage IV and Metastatic Breast Cancer ONLY forum, it will appear here.
And it does ...
https://community.breastcancer.org/forum/8/topics/...
Make it a favorite it appears on your favorites list ... easiest way to find it. Thanks for starting the thread ... lots of discussion of this topic, it would be good to consolidate it in that thread.
>Z<
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