How are people with liver mets doing?
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its not official yet but I’ve had progression while on xeloda. They will be doing a MRI on Tuesday to confirm the possibility of a 2cm lesion in my liver.
My mo wanted to start me on some type of chemio, but since I'm still resistant to that possibility, he's enrolling me in a stage one clinical trial where I would be taking a sigle medication that suppresses a protein.
He explained that cancer patients have had a good response without suffering from side effects. He told me what I wanted to hear. I'm meeting the doctor running the trial next week....he thinks I qualify for another three trials that unfortunately don't have any open slots at the moment
I'll keep you posted on what I find out...MSK is running it
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leee: I have been on carbo/gemzar for 21 months. I have tolerated the regimen well. Side effects for me: fatigue (but not overwhelming, just feel tired on some days), constipation, low wbc (on neulasta), some nausea (controlled with zofran and Ativan), back skin sensitivity 3 days after infusion that last 24 hours. We all react differently from the chemos. You have the options to try more aggressive and switch to other if too many unwanted side effects.
Tricia
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any help I can get regarding Y90? I started a thread about it. Any response there would be greatly appreciated.
Sunset
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ABeautifulSunset - I hope this thread can get you started while you are waiting for others to chime in. ~Kar
https://community.breastcancer.org/forum/8/topics/832767?page=21#idx_613~Kar
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Leee - I am on gem/carbo and find I handle it quite well. A little nauseous and tired the day after and then I bounce back pretty quickly. Light neuropathy. My blood counts have held up just fine. I think I've had 24 infusions of it now.
It's hard to predict which drugs will have bad SEs and which ones won't - it's so personal. Good luck with you decision!
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Interested in knowing how other folks are doing taking Kadcycla for advanced mets. Arr you having side effects?
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Miao, I am sorry to hear about your progression. I am curious what protein will be blocked in the trial. Would love to hear more about it.
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My biggest fear right now is that I will have some secondary condition needing a treatment or medication that could get me thrown out of my immunotherapy trial, so of course, that's what has cropped up. Last week, I started getting a sore spot under my chin that has gotten progressively worse and swollen - very painful to the touch. My lymph nodes are not swollen, I'm not running a fever, and my blood work the day before this started was great. I'm not having any issues swallowing, but that may not be true by tomorrow. I woke up every couple of hours last night because of discomfort.
Two weeks ago I had four days of soreness under my tongue, lower gum aches and swollen glands. I went to my oral surgeon because I thought this might be related to my ONJ - osteonecrosis of the jaw - that I've been dealing with since February, but he said my mouth looked good, healing was progressing etc. and the issues cleared up on their own. Weird.
I have restrictions about what I can take and procedures that are allowed on my clinical trial, so I'm thinking I should go the the MD Anderson ER today, so I will be in the same system and can coordinate with my clinical studies team while they determine what is happening - blocked salivary gland, maybe? There are so many moving parts, otherwise I would just go to a doc in the box or free-standing ER today.
Does this sound reasonable? I am normally a real under-reactor who waits too long to get treated for things, so I'm trying to look out for myself, while feeling a little silly considering going to the MDA ER since this isn't life-threatening.
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Kathy - how responsive are your doctors in the trial? Can you go to them first to get an opinion? When my sister had a strange bump in a personal area, her MO took a first look. It was just a pimple but they would have advised her if otherwise. Otherwise, going to the ER seems to make sense so that your records are all in one place. Fingers crossed it is something simple.
My sister has officially had a partial response to her clinical trial! So lesions have decreased by 30%. Radiologist says edges are now so diffuse it's hard to measure - her main lesion is now estimated to be 12mm X 15mm. All going in the right direction.
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That is great news about your sister; I'm so happy for her!!!
As far as contacting my study doctor, I've never had to call them about something new. The swelling has gotten more pronounced overnight and I'm afraid to wait until Monday.
What will probably happen if I go to the ER at MDA is that I will be there 10 hours mainly sitting, but maybe an ultrasound will reveal what this is and I can go home with some approved meds. A trip to the local stand-alone ER might take a couple of hours...
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That is great news about your sister; I'm so happy for her!!!
As far as contacting my study doctor, I've never had to call them about something new. The swelling has gotten more pronounced overnight and I'm afraid to wait until Monday.
What will probably happen if I go to the ER at MDA is that I will be there 10 hours mainly sitting, but maybe an ultrasound will reveal what this is and I can go home with some approved meds. A trip to the local stand-alone ER might take a couple of hours... I'm going back and forth about what to do.
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Took my first dose of Xeloda this morning!!!! Am very nervous!!!
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JFL, I have a meeting on Friday with the folks running the trial, hopefully I get enough facts to make an informed decision, I will let you know. One thing is clear already: this therapy is for all sorts of cancers, and I happen to believe that is the correct way to treat cancers. Not so much on their locations, but on the type, which could then lead to a particular carcinogen or carcinogens.
I did ask my MO if he would consider prescribing testosterone, but he was totally unaware of the results from that clinical trial and dismissed it outright. He was aware instead of therapies where testosterone was removed....it’s all so frkng confusing.
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Kattysmith, I'm so sorry to read about your predicament....I would go to MDA with a good book or something to take your mind off things while you wait, since they would be able to access all your medical records, and more likely to come up with an accurate assessment. I hope it's nothing serious.
Gracie don’t be nervous....the SE from Xeloda are cumulative....just pray it works for you for many years. It’s a very gentle drug, although I progressed while on it.....but I got 9 months of feeling normal, so I’m grateful...
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Thanks MiaoMix, I have decided to do just that. Better safe than sorry and yes they will be able to coordinate care much better there!
And, I am so sorry to hear about your progression, but glad that you're getting into a trial!
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Miaomix-i had a consult from MO #2 that has been studying MBC for over 30 years and also recommended straight estrogen before more chemo. It was encouraging but current MO dismissed it right away.
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Leee...I guess we are the only one interested in figuring out what would work for us based on what we learn from each other on these boards...but we all react differently to the same medications...making any decision fraught with uncertainty.
I've noticed that MOs tend to follow a very strict protocol that's the same in ALL hospitals big and small. When they have exhausted that list, some, are brave enough to think outside the box....while others just give up. We have to advocate for ourselves, but I won't deny I really don't know what's best for me.
There are so many conflicting medical advices on diet alone....
Yesterday my dear MO stated that he should be prescribing chemotherapy, but found a clinical trial that He thought I would like and benefit from because it comes with minor side effects....I was grateful for his efforts in accommodating my needs. But I don't have the details of that trial yet....and who the hell knows what I'll be getting myself into.
Im trying to stay positive as I try to get rid of a numbing sensation in my spine that clearly indicates there's progression. The pain in my flank around the liver area, however, has abated for now. What any of this means ...I don't know...MRI on Tuesday should shed some light
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My liver is literally covered in tumor. Doc says without intervention... 3-4 months. The last two chemos failed. I haven't given up. We are gonna do Y90 to hopefully get the Mets under control...then probably Abraxane. I've been living with metastatic breast cancer for EIGHT years. I realistically can't go on much longer. Doc says two more years is optimistic. So .... there it is. My expiration date. In 8 years he has never said this. Doctor Postive has always said I'm gonna live a long time. Now that it's taken over my liver...he's not so positive anymore.
I also have an appointment with Dr Nagourney next week. I remember Z mentioned possibly giving him a try. I don't think she did. I am lucky to live near his facility and my husband actually knows him personally. He's very unconventional, but he has been known to bring a few people back from the brink. So, we'll see about that too.
I do have some insider information on something happening at City of Hope. They have been conducting research for years on an oncolytic virus (one that attacks only cancer cells) and it looks like it may be ready for trial in about 8 months or so. If I make it that long, that just might be my Hail Mary
A Beautiful Sunset
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Thinking of everyone and sending love your way. We all deserve a weekend of peace and relaxation.
JFL - Darn, I hoped your trial would work. I'm glad your doctor is starting you with a different treatment option right away. You're always so generous with sharing your knowledge and supporting us with liver mets. I've learned so much from you. I believe your liver & bones will once again respond.
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ABeautifulSunset, my heart goes out to you, but not because you are expiring, on the contrary, to encourage you not to give up... So much is happening in terms of treatment, if we can just hold out for a few more steps we will find our bus ride out of this crap shoot is ready for us! Focus on the Y90, try the unorthodox doc and get to City of Hope... Write your Oncologist's prediction on a piece of paper and then burn it to ashes. And if you can, read a book called The Anatomy of Hope, written by a MD about his cancer patients who had beaten the odds.. They all had one thing in common.. Hope. My friend who is being treated for colon cancer read it, she found it incredibly encouraging and helpful. I will read it soon.
Remember, one step at a time
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abeautifulsunset....thinking about you and wishing you well as you embark on the next phase of treatments. Be strong and remain focused on all your options. I agree you should consult with doctor Nagourney and undergo the Y90 that has helped Grannax and JFL. I hope the next treatment makes all the difference. My heart goes out to you..
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KarPC, thanks for your kind message.
Miaomix, your trial sounds interesting. I do like the idea that trials are approaching cancer in different ways, given that the ways it has been addressed to date haven't cut it at the end of the day. I hope you do really well in this one and will look forward to hearing more details. My current MO does think outside the box. I do appreciate it as my last MO was straight line, no veering off course. If don't do testosterone now, I will do it later . . . and maybe try to coordinate some exercise goals/personal bests at the same time if I am going to be "juiced" up anyway
Abeautifulsunset, I am sorry to hear about your current struggles. I recommend you pursuing the Y90 route first (not wait for something else to fail) and pushing the IR's office to move as quickly as possible. IRs prefer candidates who are generally in good health with decent liver markers (I recall hearing below 5 x upper limit of normal or something like that) and stable disease elsewhere. These are not hard-fast rules though. The liver needs some remaining strength to clean up all the dying mets and heal from the Y90, particularly if you have a heavy tumor burden in the right lobe, given that lobe's large size. The left lobe is so small, relatively, it doesn't require the same recovery, in my experience, even if you have a heavy tumor burden in that lobe. It takes a bit of time to get everything set up with registration, IR appointment, mapping procedure, etc. You may need a washout period of a few weeks as well. I think it took me 4 weeks to get to my 1st Y90 with me pushing everything to move quickly. Most people wait 4 weeks between Y90s for each lobe. My IR made me wait 8 weeks given the large tumor burden in my right lobe, which was done first. I believe you will have a lot of success with Y90 to really get out in front of those beastly liver mets that are always so many steps ahead of us.
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abeautifulsunset - I'm glad to hear you have an appointment with Dr. Nagourney. I've heard great things, and he's on my short list of people to see when I am at a juncture in the future.
thinking of everyone who has posted. so many people at decision points, which can feel so unsettling until you are headed on your new path.
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thank you JFL. That's exactly what I needed to hear. We are moving quickly. But first I have to get some tissue for Nagourney. After that we should start the mapping later next week or early May. I have an important wedding on May 11, so procedure 1 will be right after. (By then I'll have been off treatment for 6 weeks). He said only a week between the first and second procedure.. then onto Abraxane (oh fun). Not the summer I planned, but what can ya do.
I will also go to the thread that you and KarPC recommended and read the history.
Mia and Daywalker, thank you for your kind thoughts.
AB Sunset
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I also posted this on the Ibrance Thread. But I wanted to cross post since I posted before here about my concerns that there may be a new liver lesion.
Morning all. I went to the hospital lab today for my monthly bloodwork. So I stopped by the Medical Records Dept. I had my every 3 month CT done last Wednesday and had not heard anything. I see the MO tomorrow for my appt, but I wanted to be prepared and know the CT results before I see the doc. I have posted here that the last CT showed somethin somethin new in the liver--artifact or starting of a new lesion. Well..... This CT shows nothing new !!!!! "Stable lesion inferiorly in lateral segment of left hepatic lobe lesion consistent with known metastatic disease having similar appearance to Jan 2019. Questioned metastatic lesion left lateral aspect of left hepatic lobe on prior image not confirmed today with this felt to have represented artifact as previously suspected." Woohoo.
I thanked the Lord all the way home. And I am very glad things are stable. I post here sometimes with a negative view, but I am thankful. But.... I just always wonder when the shoe will drop. Did the CT miss something like in Jaylea's situation with the esophageal met. I do have a lot of heartburn issues. Or, as I have posted before, could something be growing in the brain and not showing symptoms yet since we do not do brain scans routinely. Will I be one of those that lives with MBC for years or will I progress at any time and not make it to the 5 year mark, or even 3 year mark---I am at 1.5 years. I am trying to have a good outlook, but I live with a dark cloud over me. I know you all can empathize and know what I mean. No one truly understands like this group.
Off I go for the day--groceries and getting the vehicle fixed.
Hugs.
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Candy enjoy the good news. I'm so happy for you!'
What you've experienced is what we all pray for....That they have made a mistake and things will be stable for at least another 3 months. or that we're diagnosed NED.
.....let's face it though ...cancer treatments are mysterious and unpredictable....there's nothing 'scientific 'about what we go through....thats why we all have to rely on each other for guidance or pray to God for miracle, because that's exactly what it takes...
Even when some of us succeed in staying alive we don't really know why...but today we celebrate you Candy! Good for you! May the good news keep on coming for years on end....
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I follow this thread pretty regularly and I learn so much from all of you. I so appreciate that you so graciously share your knowledge and experience. It seems that there are several folks struggling right now with progression and trying to figure out the next steps forward. I am thinking of you all and hoping for the best for all of us. I like what Daywalker shared about Hope. It's hard to keep the hope sometime but it does seem to be an important ingredient to living life to the fullest and managing this hideous disease.
TerrySB, I wanted to let you know that I have been on TDM-1 (Kadcyla) for nearly three years now. I don't have too many side effects now though it seems like there were more when I first started. I guess my body has adapted to the drug though I do experience super dry skin, fatigue (I try to take a little afternoon siesta whenever possible) and I get headaches, usually just during the first few days after an infusion. There is a Kadcyla thread on this board but it isn't super active so feel free to PM me if you have questions etc. Overall, TDM-1 has been pretty good to me - I hope it works well for you too!
-Margarita0 -
Tomorrow is Scan Day..bone and CT.
I am prepping tonight by eating coffee flavored peanut M&Ms and a glass of Chardonnay for dinner.
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Sandibeach57: Hope it goes well. I have just been diagnosed Stage IV, liver mets and just starting chemo. I look to you and shetlandpony, JFL for a glimmer of hope. I just want a few decent years of QOL. NEAD right now is so far beyond my greatest hopes.
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Elderberry, when I was diagnosed with liver mets, I was beyond terrified and had no one to talk to in my similar situation. My hospital does not have a support group for Breast Cancer Stage IVers. I decided to come back to BCO to seek out others. (I was on BCO with first dx in 2006). Before hearing from the women and men on this online community, I was lost in sadness, confusion and fright. My Palliative Care RN was also helpful, but I really needed to hear from folks like me.
Keep posting. You will find yourself again. You will be different..thanks to the drug side effects, but you will be okay. You are on a good drug Herceptin.
When I was at my worst ( and trust me, I still have some off days), I tried to complete one task..even if it was a shower or read a magazine or fix a bowl of soup. Just to feel I could do something. Gradually work yourself up to 3 things...then more. Pretty soon, you will be taking walks, going to a movie or joining a book club. (You didn't say if you have children at home..that will be your total focus and maybe, the reason to get up..)
I am sorry you have this disease and truly understand your sadness. Take each day, okay? It will get better.
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