How are people with liver mets doing?
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No, no, the port was accessed by the nurse at the hospital, the needle left in place and covered with clear film, and a catheter dangling out. So at home we just screw syringes into the cap at the end of the catheter. But it is pretty complicated. I’m deer-in-the-headlights right now. Thank goodness DH is technically inclined.
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Dear Nicole, I am sorry, I misunderstood in another thread that you were oligometastatic but still, if you have confined lesions in your liver and bones, you can be considered as one. Some studies now are trying to expand the term "oligometastatic" because some people with clear confined lesions even in few organs and treatments working, experience amazing results. Not to say I am convinced everyone (I said this many times here) should be treated with curative intent, I think you should be too. So now PET, then good results, then good treatment, then NED and we'll talk about it all in 5 or 10 years. I wish you this scenario from the bottom of my heart. Please keep us posted!
Dear Frisky and others: are you still on FenBen? I see other options emerging, which is very interesting. Thank you for your research! Saulius
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Nicole - just wanted to share a few quick things. After ACT chemo, my mastectomy showed live cancer (ER+), so I went on ibrance/faslodex/lupron. While on that, I became stage 4 (2 liver mets). I switched to Gem/Carbo and had a great response (was NED for quite a while). Now I am on Eribulin. I live a very active life with 2 little kids throughout both of my stage 4 chemo drugs. In fact, I found ibrance more difficult than the chemos. Everyone is different, so I say, don't be scared of chemo
as the others have said, the "drink" at the time of the PET/CT can be used if a "with contrast" CT is ordered. generally, I have PET/CTs without contrast.
the waiting period is always so difficult, as you scan, reassess, and come up with a new plan. hang in there
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Shetland,
YIPPEE!!!
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JFL thank you and Thrivingmom...
Ok ladies...I thank you for the positivity..and I don't want to sound negative here though some might take this that way so have some mercy on me as I am still trying to absorb the fact about having had progression on Ibrance/Let/Faslodex and now terrified of what the PET is going to reveal. With that said...I am seeing a bit of you have Grade 2 cancer....don't you all think a person with Grade 3 like me, situation could be a lot worse than you that are Grade 2 have experienced? I say this because in my PET in Aug 2019 when it showed everything had shrunk and even the bone mets almost completely resolved from then to now only what...2 months a whole other leison have grown ..... rapidly dividing /growing cells/cancer...
I am not going to lie to you all...because I can't and I wont...I am not "feeling" hopeful...I love all your comments and GOD knows I need to hear that you are all hopeful for me...but I just am NOT feeling that.*gosh I didn't want to cry again but here we go** ..I feel like every time I got hopeful it just goes bad. First finding out about the recurrence...got down got hopeful...planned to have reconstruction thought I could have the nipple sparing procedure got hopeful...then couldn't do that...got down...then decided to stay flat...got hopeful again..then do the BMX feeling great hopeful etc...find out Stage 4...liver mets get down get hopeful .then go to NY consult get an MO get a plan all ready to do this...then find out I also now have bone mets...devestated again .get hopeful start Ibrance/Let/Faslodex get hopeful yet again... now..5 months in not working more cancer etc. All of this SH** has happened in 6 months...I just feel defeated...im so sorry...I feel horrible saying that to you all when you have done everything to help me be positive and I am sitting here telling you this and sobbing. Please try to understand....God knows...no one in my real life here can. THEY CANNOT.
On a side note..I went to eat with my DH at this place called CAVA (for those of you on the west coast I think you know this place) we just got one here in VA its so good, very healthy food. anyway..he asked me what you all said...I started to cry....and said.."I have never in my life felt so loved and cared for by complete strangers than I do right now, its crazy".....
Edited to fix typos..cant type right through tears.
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Nicole,
When my first treatment failed(Ibrance/letrozole), it took me about 2 months to accept it. It was scary and difficult. I am on my fifth line of treatment now, going into the fourth year since MBC diagnosis. I have pretty extensive bone, liver, spleen, and adrenal mets. Although each transition is still tricky, i adjust in a matter of hours now. I have learned to mostly live in the moment, which has been my greatest gift to myself and my family. Yes, meltdowns come, but they also go away pretty quickly. Also, all of my treatments so far have been very tolerable, so fortunately, I have remained mostly active. My current treatment is the first one that caused hair loss. I did not have IV chemo until my 4th line of treatment. ( I did have the heavier chemo for 4 mos. in 2014 with Stage I diagnosis.) Sooo, sweet sister, you have a long time remaining to be here with us on this glorious earth!
My best, Mary Jane P.S. It is totally OK to not feel hopeful and be freaked out. Feel what you feel, when you feel it. You've had a lot in a short time.
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Shetland,
Soooo relieved to hear you are home! And that the liver abcess is resolving! Best news! Sending love and best wishes, Mary Jane
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Shetland....wonderful news! I'm so happy antibiotic is taking care of the infection and you’re back home!
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Nicole-- All I can say is, you have a right to feel what you feel. I have not had progression yet and I am now 2 years into diagnosis, so maybe I don't have a right to say anything to you. You have had A LOT to deal with in just 6 months !!!! I am praying for you. That you will feel peace. Hugs.
Yeah Shetland for getting home.
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Shetland I'm so relieved to hear the antibiotic is working and you are at home. Giving yourself antibiotic is scary at first, then it gets easy. If I can do it, anyone can do it. The nurse will walk you through it and won't stop coming until you are comfortable doing it.
Nicole. You have had way too much happen in such a short time. Some of us just don't do what the averages say. I'm one of those, too. Once you've had it happen there's no believing in the averages again. It happened to YOU. Like others have said, we all go through the hopeless times. It's not as much fun to post when you're in the middle of inconsolable grief. But, you did. That's something. Yes, we all get you.
Thriving mama I'm on Gem/Carb but I have no idea if it's working. I won't have a PET till the end of November. How long have you been on it? I'm glad to hear it worked for you. Gives me hope.💞
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Shetland I'm so happy to hear your good news!
Nicole, I understand your fear and I hope that my story will give you some hope. I am Grade 3 with a super-high ki67 and the most aggressive type of breast cancer there is (IBC). I was Stage IV de novo and my cancer grows fast. I had mentioned in another thread that back to back PET scans showed that I had a tumor grow 2cm in two months while I was on a chemo that obviously failed right off the bat. I have been dealing with steady progression for more than 18 months now, my last good scan was January 2018 when I was close to completing my first round of chemo. As soon as we knock it back one place, it either comes right back or it pops up someplace else. BUT I am still doing okay, I am otherwise healthy (somehow), and I still have a good quality of life, especially when compared to what Shetland and some others are going through. I have gone through some really dark times, it's hard not to when week after week, month after month, your doctors have nothing but bad news and you can see the disappointment in their eyes. It's really scary when treatments keep failing immediately and don't work at all. Last February when 3 different treatments did absolutely nothing to slow it down I was in a state of absolute panic. But we finally made some small progress (even though it just popped up someplace else and started spreading like wildfire haha). My only saving grace is that so far we've been able to keep it out of my other organs, instead it's been muscle, soft tissue, skin, that d*mn tumor tangled in my brachial nerves, and now it's in several dozen lymph nodes throughout my body. I'm still doing okay, the cancer hasn't beaten me yet and I just started another chemo yesterday. Hopefully this one will work, at least for a little while because it would be nice to have a chance to catch my breath. I think I'm about due to have a good scan.
I am intimately familiar with your fear. It's okay to feel what you're feeling. let yourself cry and be angry and yell at how unfair it is. It's a lot to deal with, especially for those of us who have setbacks so soon after our Dx. Sometimes I even get angry about people who get years on a treatment and wonder why I can't just have a "normal cancer" like they do. And I don't want my husband to know how afraid I get sometimes because he already has so much to deal with, so I try to hide it and be strong for him. Indulge in some self care and pamper yourself, for me it's usually eating all the ice cream I want while wrapped in a blanket on the sofa, and then spending time with good friends who make me laugh and let me forget about the cancer for a while so I can get back on track. Eventually I dust myself off and find my fight again, and you will too. I always get a burst of cautious optimism when we get a new plan in place and I can find my peace for a while. You are early in to it and you still have many treatments to try, so stay strong. We're all here for you.
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LoriCA- Bless you. I am glad you dust yourself off and continue on even though it must be hard sometimes. Hugs from here.
Question to Lori-- How did you find mets to muscle and soft tissue?? Were there any symptoms? What scan found it? Just wondering. We do CT's to monitor my cancer and the doc just seems interested in the size of the liver mets and if any other site seen on CT (organs mainly). I have only had 1 PET- at diagnosis- and insurance denying another so far. I have felt lumps in my forearms for a long time. Not changing. Don't think I have ever told MO. And MO does not do a head to toe assessment, look at skin, or feel for lumps and bumps.
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Thanks Ladies...and Thanks Lori...hopefully your attitude will rub off on me soon.
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Candy, I would definitely mention the lumps in your forearms to your MO. When I was diagnosed stage 4 in 2015, those were my only symptoms. At first I got a couple of lumps in my forearms which I ignored. Later a couple more appeared on my shoulder and one high up on my right arm near my shoulder that begin growing at an alarming rate. By the time I had them biopsied, another one had popped up on my neck that was growing rapidly.
It was a really unusual presentation, one my oncologist hadn't seen before. They were extremely high grade.
Yours are probably just benign fatty tissue, but do mention them and have them palpated.
Best wishes,
Katty
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Candy, I'm not a typical case so you really can't go by my experience. I know that a lot of people get quarterly PET/CT scans for monitoring purposes, but my MO doesn't believe in scanning just for the heck of it unless I have symptoms or we need to verify whether or not a treatment is working. In my case that means there's never been much time between scans anyway. The longest I've gone is 5 months and that's only because my MO didn't take me seriously the first time I told him it was spreading again because I had just finished that first round of chemo and was on H&P for maintenance. It wasn't supposed to start growing again so soon haha! He's learned to take me seriously now when I say that something is a concern. We primarily do PET/CT scans although occasionally there's reason for an MRI, it all depends on where the area of concern is because different mets show better on different scans. So for this latest round of fun, I had a PET/CT in October due to symptoms. Another PET/CT in December to confirm that chemo wasn't working and in addition to substantial tumor growth in two months, that one also showed the new met in my pec muscle that I would not have suspected. I had several CT scans between January-April to monitor a specific soft tissue tumor during rads because it didn't appear to be responding. In June I had both a PET/CT and MRI to confirm that rads had shrunk that painful tumor (that one in my brachial nerves, barely enough shrinkage to be considered a partial response but great pain relief), and that scan is the one that reported the early activity in my lymph nodes that I otherwise would not have suspected at that time (a couple months later it was obvious when they began noticeably swelling). I think it was July that I had a brain MRI because of symptoms but thankfully that was clear. I had a PET/CT this month (September) because of symptoms that showed significant progression in my lymph nodes, and if we don't quickly see signs that Kadcyla is working after two infusions I'll have another PET/CT probably in November before we can try another chemo. If Kadcyla appears to be working, we won't worry about scanning for a while. Right now my supraclavicular node is hard as a rock and the size of a golf ball, and the nodes under my jaw are enlarged, so we'll be able to easily and quickly judge if there's a response to Kadcyla, assuming that if they are responding then the internal nodes are also responding, and hopefully that tumor tangled in my brachial nerves although it's a resistant little bugger.
My case isn't the norm because many of my problems have been easy to monitor visually or by feel, so we're comfortable with scanning on an as needed basis. As long as I feel good and my quality of life isn't compromised, we don't panic, and I've never been stable long enough to worry about scanning just for the heck of it anyway. With that tumor in my brachial nerves, when it's growing it doesn't take long at all before it's very painful and an obvious lump. But I had extensive skeletal mets that were asymptomatic but were found on my initial Dx PET/CT along with a couple asymptomatic liver mets, so I do understand the worry that it could be spreading and you won't know unless they scan. My bones have mostly healed now and my liver mets have completely resolved (for now?), but like I said it just keeps jumping to other locations, so try to figure that out. And scans aren't foolproof - a PET/CT has never shown my skin mets, and twice so far they've been a problem. I guess the skin doesn't pick up the radioactive sugar for some reason. They don't show on an MRI either, only the skin thickening. So skin mets have been purely visual, easy to identify and confirmed with a biopsy, and when they are acting up it's easy to see if things are getting better or worse when I start a new treatment.
Anyway, it sounds like your MO has decided that CT scans are most appropriate for your situation. I would think that your CT scans would pick up any soft tissue mets because that's what we were using to monitor treatment progress earlier this year for a soft tissue met. Mets in your forearms would be unusual, especially in both arms. And forearms aren't included in the typical PET/CT scan since your arms are over your head and the scan goes to the base of the skull. But if you have a concern you should definitely mention it to your MO because even if isn't mets, it could be another problem. I've been hearing from a lot of people that insurance companies aren't approving PET/CT scans for monitoring purposes, only when there's a reason for one. In my case they have always been done because of symptoms so I haven't had a problem with approvals yet. If your MO has a reason to order a PET/CT, not just to check and see but because you have concerning symptoms, I'm sure your insurance company will approve.
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Thanks Katty and Lori. The "lumps" in my forearms are probably nothing. Nothing seen, just felt. No pain. Not moveable. I noticed them first in the left arm probably a year before being diagnosed with the BC. Now I notice them in the right arm. Probably just fatty cysts. I guess I need to mention to MO. But she will probably think I am being paranoid. The initial PET in Sept 2017 never showed any hot spots in the left forearm. Just wondered what mets to muscle presented as. If muscle mets has symptoms or only seen on scans. You know how it is---every ache, pain, lump, etc is cancer.
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Nicole, you have the right to feel what you feel and be very scared, disappointed, down and hopeless. Don't feel bad about that. We are here to listen and support you. Vent all you want. Many people feel comfortable sharing fears and realities here that either people in their daily life do not understand or do not want to hear.
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Dear Nicole, I am pretty late to post here... we are not you, we will never feel like you but we really know how you feel. And we all want to hug you, be with you, talk to you, help you in anyway we can. Meltdowns... they are constant.Two years ago I was literally loosing my 33 year old wife with 2 year old boy on my hands. De novo, out of nowhere, ki67-70%, grade3... we noticed a small lump and after MRIs and biopsies were over it was already in the liver with main tumor being 7 cm. They could not even give chemo officially because her liver numbers were in hundreds, liver full of dispersed tumors (although she seemed absolutely fine), and then I understood "that was it, it is over"... we had to sign we are going for chemo on our own risk... When watching movies and seeing parents faint when they hear over the phone their child died I thought "how can this be, how can one faint" but here we go... I fainted myself already twice after devastating news. Our life, our future was stolen. There were times I hid and cried for hours, my father usually came to me and I just cried cried on his shoulder. I am on antidepressants and sleeping pills for past two years, I cannot fall asleep, because I think think think, try to find solutions.. I meet a psychologist every two weeks... so meltdowns, panic attacks, they are here. But then I get up, we get up, wipe off tears and go for a fight, and two years are already under our belt... and we march on. And so will you! It is not about hope only, it is about one day at a time, one step at a time. If you feel that that day you feel bad, vulnerable, want to cry, ask someone to be with you, don't be afraid, ask someone to advocate you. Go for chemo, don't be afraid, take it just like another drug. You are strong, you can. There are many myths about chemo, too many in fact. Docetaxel + something, or similar treatment could make wonders. You need good news, you just had too much to endure in a very short time. Big big embraces, Saulius
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Saulius..wow..I am crying...but in a good way. Your story and feelings just touched me so much. Especially when you said "that was it, it was over". That is how I have felt. Your wife Grade 3 Ki-67 70% That is my exact number as well 70% Grade 3. I know I have to fight and have to get my head in the game it's important..I just feel like a child...afraid to have hope or be positive. It sounds stupid, and it is but I know I have to do it. I like what you said about "it's not only about hope, its about 1 day at a time, 1 step at a time". You are right!
I need to get through this PET scan today and GET A PLAN to try and save my life and give me more years with my husband, and to see our son get married next year and eventually to see him have our grand babies.
Thank you all again. Saulius thank you so much your words really meant a lot to me.
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Yes, Nicole, GET A PLAN. Exactly! Forget about others telling you have to be positive. You don't have to be. A person on the street at night assaulted by bunch of idiots is not positive, he/she's fighting for his/her life. How can you be positive during such moments? This "endless positivity" as religion of new ages is nonsense. Hope - yes, it always has to be here. Nothing is lost. Go through PET, get a plan, get treatment, if there's a possibility go for ultrasound additionally now, and ultrasound in a month or so - if treatment woks, results will be easily seen, high ki67 usually react to chemotherapy well, and you are chemotherapy naive, so it has to work. Wish you all the best and please keep us updated. Saulius
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Saulius, truer words were never spoken.
" Forget about others telling you have to be positive. You don't have to be. A person on the street at night assaulted by bunch of idiots is not positive, he/she's fighting for his/her life. How can you be positive during such moments? This "endless positivity" as religion of new ages is nonsense. Hope - yes, it always has to be here. Nothing is lost."
Katty
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Thank Katty, I really say what I believe in and what I feel. Always.
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I just have to say, everyone on here is amazing!
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Grannax - Good question and a reminder that I needed to update my profile. Gem Carbo worked really well in 2018 (Feb-Oct), was NED most of that time, so took a chemo break. Had progression while on the break, so I restarted Gem/Carbo in February of this year. It worked well again until I progressed on Gem/Carbo in June. So, it worked really effectively for ~18 months. I hope your next scan shows it's really effective for you too! Now, I'm on Eribulin.
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Thanks Thriving mama. I NEED to hear all stories of Gem/Carb working.
This thread is deep. We need deep. Where else can we share deep? For me, nowhere else. I live alone and have lots of supportive friends and family. But, several only want to hear positive words. UGH. I share some of the deep stuff, but only bits and pieces. I'm constantly concerned about how much my family can bear to hear.
Today I think my legs have turned into wet noodles. Probably because my HGB is so low. I'm sure it will go up in my off week before chemo on Friday but what do I do about today? Actually, it's been like this all week. I don't think I should call my MO for a blood transfusion and I'm just guessing at how low it might be. It was 8.6 before TX last week. Eight seems to be the cut off for needing a transfusion. I've already had to have one about a month ago.
A day in the life. I'm supposed to go to a two year old bday party and to get RX. Grrr💞
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Grannax- Concerned about you. My suggestion would be place a call into MO. Tell her/him that you feel really weak. See if you can just do some blood work today to check things. Make sure not just HGB but electrolytes are ok. Hate for you to wait and things get too low. Can you just pop to lab and get blood drawn? Then MO can call you if there is a problem.
Hugs.
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Thanks Candy. I might do that. I don't know where my MO would send me. I go to UTSW, our biggest Cancer Center in Dallas. I think they have a lab open on weekends but not sure. My PCP is closed. I'd definitely have to have someone take me, my CC is not close by. But, I do have several minor emergency clinics near by. Good idea.💞
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Grannax- Maybe the emergency clinics would accept orders from your MO and draw the blood.
I guess that is the good thing about being in a rural area. We have 2 hospitals in our small town and my cancer center is owned by one of the hospitals. So my MO would just call the Lab and order the tests she wants and I would go and get it drawn. That is a plus, but lots of minuses being MBC in a small town.
Let us know what happens. Worry about you.
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Struggling with anemia / low hemoglobin is hard, Grannax. If you need one, insist on a transfusion. Usually, the cutoff is 8, like you mentioned. However, most centers will treat for symptoms/based on how you feel and it may be possible to get one in the low 8s as well. I did that last year. The reality is that my hemoglobin was definitely below 8 at that time but I only had it tested every 28 days, when I was fully recovered from my last cycle of Doxil. I have no idea how low my hemoglobin dipped during the 28-day time span. I couldn't function well physically and my brain was so foggy. You can ask your MO if he/she thinks that iron supplementation would help as well. It will for some people with chemo-related low hemoglobin/anemia, depending on whether your iron levels are low in addition to the hemoglobin. Do what you need to do / can do to keep it manageable, to permit you to remain on treatment. That was always my biggest fear when I had a long stretch with low hemoglobin - would I be able to remain on treatment. I have said this before, but definitely look into ashwagandha, which helps boost hemoglobin. It has been nothing short of a miracle for my hemoglobin. I started taking it after I started my current chemo, Navelbine, in April and my hemoglobin started dropping back into the 8s and on the decline. My hemoglobin steadily increased and was in the 11s in 4 or so months time, just short of normal (12 - 16). Without ashwagandha, I don't think I would still be on my current treatment. I was worried I wouldn't be able to take any more chemos and would be out of options completely.
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JFL I totally forgot about A, I'm going to order it today. I think you said Amazon.
I did not go to a lab, my daughter ran my errands for me and I stayed home. This morning I feel the same. Bummer. I didn't have anyone to take me yesterday and I know I don't feel good enough to drive. If I lay low today, I can call MO tomorrow. It didn't seem like something I should call 911 for.
Ordering A now💞
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