How are people with liver mets doing?
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Penny, Hopefully the scan in May will show a good response to the spheres you had put in recently and your meeting with your onc next week goes well. You have the strength to see you through another five years and more.
chichi, Sorry to hear that the arterial spasms have reappeared. Enjoy your extended chemo break and your visit from your brothers. It sounds like it is going to be fun for all of you to get together again.
Ella, Hope your biopsy and RFA went well yesterday!
I finally got my MRI results back which was ordered to see how well the chemo was working. The report came back showing further regression. Bones are stable. There has been more shrinkage in the liver mets; about 40% more. Was so excited I forgot to ask about my lung mets. I will have to check when I get the report but I assume they were unremarkable. The MRI was read by a specialist radiologist and he doesn't think there is active tumor in my pelvis - he thinks it is dead tumor. The orthopaedic surgeon had ordered a CT scan and the results suggested active disease. It is interesting that the two types of scan and the two radiologists didn't agree. I believe the MRI more than the CT. I have always had MRIs to monitor my disease and the same radiologist to read them each time. He is an expert in reading MRIs for cancer. All this means that we can go ahead with the surgery to replace the rod in my leg in about 2 weeks and I am going to carry on with gem/carbo after the operation. So pleased and happy as this is the first chemo that hasn't failed after just 6 cycles, like taxol and Xeloda did. Although to be fair the taxol did work initially. Xeloda did absolutely nothing. It was was fuel at the wild kegger party my liver mets had last year.
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Springwatch - we'll take the MRI over the CT. Yay! Thanks be to God!
Penny
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Springwatch - you cracked me up at the 'wild kegger party' comment you envisioned your liver mets having, as I think that's what mine are doing now being off chemo for three weeks. I am so happy for you that you can get the surgery and hopefully by summer you'll be feeling much better. Chichi, I'm glad you are enjoying your family - that always makes me feel better. Red Wolf, please don't be sad about the elusive NED, I'll be 6 years with stage 4 in June, I never got to meet him and never will. Stability, or close to it, is good enough for me.
Going to get my liver biopsy tomorrow
Have a good weekend everyone!Laura
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Happy Dancing, Spring!!! I would definitely trust the fella/gal that knows what your previous scans looked like!! So happy for good results, so let the surgery & healing begin!
Chichi...I can understand the thought of spasms due to worry about another one! I avoided certain movements on Navelbine because I knew it'd lead to a cramp. These were my hands & feet...not my heart! Enjoy your break & your brothers...what a loving gesture to come see you!
Penny...I'm right there w/the other stable mates! NED won't be in my vocabulary but, I just hope/pray that we all are in this, supporting each other, for many years to come!!!
Laura...your plate is FULL!!! Didn't know son was traveling to Denmark...exciting! Mine just got back from a Hong Kong business trip. He wanted me to go & I politely declined but seeing his pix...oh my! (Still wouldn't have been 16 hrs in a plane!).
My back still hurts, I'm worried as ibup doesn't kick it...and that's rare for my "no pill taker" body. Bone scan next week. I'm a bit concerned about not seeing onc for 12 weeks...does anyone else go that long. Perj/herc every 3 weeks seems like 8 weeks should be ling enough. On chemo it was every 4 weeks. Just a little worried.
Sending cyber hugs & prayers abound for good scans!!!! Late to babysit!!!!
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Penny, your strength and your faith in God are an inspiration to me. Still sounds like most of the news is good with your scan. Can they do the spheres in the right lobe? Seems if it worked so well in the left lobe, that maybe you will achieve ned! That's where I will focus my prayers for you. Thinking of you and all these lovely ladies posting here!
Debbie
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Debbie - I actually had the spheres done in both lobes, one at a time. The right one was done the most recently so the IR says it's typical - all irritated and swollen from the spheres so it's hard to get a good read right now on that side, but he is pretty sure he sees some new little lesions anyway.
:-) Penny
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I posted a couple weeks ago, but I'll summarize and add what's new. I had an abdominal scan last month that showed the lesions in my liver have grown. They both are quite small, 1.4 cm each and the biopsy confirmed Breast cancer mets to the liver. My oncologist's recommendation is cyberknife treatment and I already had my first appointment with my radiation oncologist and now am waiting to have gold seeds implanted into my tumors. My tumors also changed from Estrogen+ to triple negative. My oncologist is not recommending chemo....said that there have been studies that show its not effective and only makes the person suffer. It's not like I'm looking to feel miserable again, but I want to have a better chance to keep the mets from returning if cyberknife is successful.
-Are you told what grade your tumor is or does that only apply to the primary cancer?
-Who has had cyberknife treatment and how effective was it?
-Should I get a second opinion regarding chemo or has someone else been told that chemo isn't effective?
-How do I get a second opinion (if I chose to get one)? Does it cost anything or is it covered by insurance (I have Tricare Prime)
-Has anyone gotten a prognosis? My oncologist said that cyberknife can cure me....I'll still be officially stage IV but it was caught early. I have read multiple times that life expectancy doesn't matter if mets has been found early or if you become symptomatic, a reason why they don't do regular scans.
-For those of you that are NED, do you get regular scans now or is it back when you were 'cured' with your primary and only get scans if you are symptomatic?
-Is anyone aware of a facebook support group? I find fb to be much easier to keep up with.
Sorry for all the questions, I hope someone can help me out with some of them.
Bonnie
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Bonskie68,
I read your post a while ago, and i am glad you are a candidate for a cyberknife procedure. I personally am not. But to answer your question if your cancer is the same as the primary ususally it is the same grade but it might undergo some changes such as becoming hormone negative or HER2+ . If you are triple negative to my know ledge chemo is the only way to combat it. Even if your cyberknife is succesful, the tumor is in the liver which means it is circulating in the blood. Therefore, he should use chemo even if the procedure is successful , but if there some cells lurking around chemo should be able to control them. As i see you only had one line of chemo . Telling you he will not use chemo is very strange. I would advise you to seek urgently a second opnion from a good reputed cancer center as soon as possible.
As for the insurance i cannot help you since i am not from the US but i am sure one of the ladies here can advise. Good luck on your cyberknife and i hope you get good advise so you can be treated properly.
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Spring,
Wonderful news , and with God's speed to your operation and to an early healing process.
Chichi,
Hood to hear from you as usual , sorry for your heart spasms and i hope it is only an anxiety case . So happy for your family reunion , have a grand time with your brothers and come back to tell us about it. I am still back in my country had my session here . I severe issue with diarrhea which prompted me to be hospitlized for three days , but i am well now and spending the rest of the few days i have with my darling son. Enjoy your break and your time ! Xoxoxox
My dear Penny,
I am glad your SIR-spheres worked and hope when the second one heals shows the same results. Your faith and belief in God is an inspiration to us all , and like RonnieKay , i hope we are here for a long time supporting each others for years to come. Hugs.
Laura,
Enjoy your break from chemo while it lasts and your family and have a blast .
I hope your son enjoys his time in Danemark and pray to God to keep hom safe.
RonnieKay,
I went three months without seeing my onc but only when i was in adjuvant therapy but was told by him that if i feel anything i should inform him immediately and he was reachable at all times. I do hope your back is bette rand that ibubrufin is enough i know how much you hate pills. But i also know how busy you are all the time and active so give your back a break so it can rest for a while and if it keeps hurting then check with your doc again and again.
I hope i did not forget anyone, cyber hugs and prayers to all !
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Laura, It took 18 weeks for my liver mets to go from 5% of my liver involved to 40% involvement. So it didn't happen in overnight. I think you will be OK with just 3 weeks off before starting the new chemo. I will keep my fingers crossed that eribulin works for you. In the meantime, I hope you are enjoying have your boys at home. I hope they are helping with the packing!
RonnieKay, I hope you can get some pain relief for your back. I hope that the bone scan shows nothing going on and that the pain in your back is just muscle spasm or something similar. If your son offers to take you to Hong Kong and you feel up for it, you should go. I have been twice. I know someone who lived out there and they described it as 24 hour Disneyland and of course, the Chinese food there is the best.
I see my onc frequently. He has all his chemo patients in on the same day for treatment and comes in to review their blood work and side effects on a weekly basis. He is occasionally away on vacation or attending lectures but the nurses have said that he is always available by phone, if needed.
Bonski, I would get a second opinion on the chemo. Triple negative means the only options you have for treatment are chemo and radiotherapy. I understand that your onc is hoping that the cyberknife will deal with your still small liver mets but I would want the chemo after having cyberknife to mop up any circulating tumor cells before they have a chance to find a home elsewhere. Unless I develop new symptoms, I have MRI scans roughly every 18 weeks. I did not have any scans between finishing treatment for my primary and developing pain with bone mets. I am very fortunate that my oncologist is able to refer my case to the clinical lead at the center where I am treated for a second opinion, if needed. This oncologist has 25 years experience in breast cancer and comes with some impressive credentials, so I trust his advice.
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Bonski - I sent you a PM, hope the info helps. I just didn't want to put names of people on FB 'out there' to the general public.
Penny, I was sorry to read the last sentence of your comment. How I understand the procedure is that you are still a candidate for many other procedures along with different meds, correct? I'm praying for the best for you Penny.
RonnieKay, so glad to hear you're getting your back checked. Good or bad news lets get something done about it so you can continue loving on those grandkids!
Funny you should mention about my plate being full....I went to see my good ol' family doctor one more time before moving and all we did pretty much was talk. He brought up an interesting point about my cancer: (almost) 6 yrs ago when I was first diagnosed, I had left husband, bought house, raising 2 little boys alone, etc etc and the stage 4 came out of nowhere. Here I am now with youngest graduating high school and literally leaving the day after graduation to work in NY before college, my oldest studying in Denmark for 5 months, me selling my house and moving 2 hours away...and my tumors are getting out of control for the first time. He and I both agree that stress doesn't CAUSE cancer, but after it's out, stress can certainly contribute. I don't feel that is correct for everyone, but I do for me. Anyone have any thoughts on that? I would love to hear. Oh and the liver biopsy was uneventful, let's hope it was worth it and we get some good information.
Love you all,
Laura
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I used to think that the theory that stress causes cancer was flawed. Who doesn't have stress? Then my mother passed away - and in the year following my bone mets went from one lesion in my sacrum to lesions in different vertebrae, hip, and rib. Then almost exactly a year after my mother's passing I lost my father. Six months later cancer was found in my liver, and the bone mets went to my other hip, more vertebrae and more ribs. Stress causing cancer? I still doln't think so. But a contributory factor? Hmmm.....
Leah
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I don't think stress causes cancer but I do think it can make things worse. My mets diagnosis came 17 months after my mother died, although I had symptoms of bone mets before then. I know one person who had a very messy divorce and was diagnosed with mets only weeks after completing the paperwork. I don't think a link has ever been proven but the inflammatory response to stress is well known. Maybe along with chemo we should all be taught relaxation techniques.
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Hi Ladies, I am so glad to find this liver mets page. I was recently dx with liver mets. Soooooo scarey! I was first dx in 2010 with grade 3 stage 3. Then stage IV with lung mets and now the liver. Looking for hope, ideas, and support and need to see that you can live with liver mets! My oncologist put my on Faslodex injections. Hoping to find something to kick those liver mets right out! HELP!!!!Cathy
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Welcome Cathy, lots of wonderful people here living active lives with liver mets and lots of information on treatments, strategies to deal with the stress of both finding out and living with the ups and downs. I don't have the same diagnoses as you but my mets, found over a year ago, are for now NED. Seems like there are new ways to attack the beasties so many different treatments for the women here. Sorry you're finding yourself on this thread and hoping for the best for you.
Michele
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Thanks Michele - Really appreciate hearing positive things right now!
Cathy
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Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Seems like lately everything we do, the cancer takes and uses it to have a party. Appointment with oncologist on Wednesday - should find out next plan of action. Praise God I've made it this far!
:-) Penny
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Penny, I'm so very sorry. I know the feeling so well. All I can say is "hang in there," as you just never know
what's around the corner that will make the difference. My heart goes out to you.Also, have you had second opinions by any chance? Sometimes another set of eyes is a good thing. One of the many times I was where you are now, I went to Dana Farber to see an oncologist whose whole career was breast cancer only. You just never know what they might have to offer.
Regardless, cyber hugs to you!
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Sorry to hear Penny. Sighing with you. I too know the feeling of progressionCathy
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Penny , i am so sorry about your latest news, i know how it must feel. I, like you thank the Lord we have made it so far , he is our rock and he guides through all things. I hope your doctors are inspired to tell you what is next for you and may it be the right choice. Like Syrmom , i agree , you really never know with this disease , alll things are possible. My prayers are with you always. Big cyber hugs.
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Penny, I'm so sorry to hear about the progression. I hope your docs come up with a great tx for you.
Leah
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Penny,maybe for a second opinion you need to come to NYC to consult with my oncologist, he is working with Dr. Larry Weisenthal, who is really making a difference and able to treat even patients on hospice.It is about chemo sensitivity.here is the link http://weisenthalcancer.com/Home.html
I had a surgery on Tuesday,home since Friday, he took one tumor out for chemo sensitivity, and the other one he RFAed, there is one more, but its unreachable, sigh, but i need chemo anyway, still in a lot of pain, oxy gave me very bad reaction, so Tylenol it is. if you are interested I am happy to answer all the questions.
~e
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Penny, let's see what your Onc says on Wednesday, thank goodness you don't have to wait too long. Please let us know what the plan is as you have a lot of people on this board that care about you.
Laura
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Bonnie, I saw you inquired about Facebook groups. Not sure if there are any young women in this thread but if so, there is a Facebook group for Stage IV'rs under 40 searchable under "Stage IV Metastatic Breast Cancer Warriors Under 40". A lot of women from the Young Survival Coalition are part of it. It is a closed group but not secret, so people are able to see who is a member but cannot see posts within the group. Wanted to throw it out there in case it applies to anyone here.
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Penny, So sorry to hear about the progression. Your profile doesn't mention which chemo/s you are on or have been on, so I took the time to look it up. How did you do on Navelbine? It has been zapping those liver mets left and right for me.I started 3 weeks on and one week off, but reduced to two on/two off and have been doing better. Because of complications with emphysema/pnuemonia and then those pesky heart spasms, I'm on a two month reprieve from chemo, but will start back on April 30th. You are constantly in my prayers and your great faith is such an inspiration to me I too praise Him that he he has given you this much time and I continue to ask Him for many more years for you. Each day we stay alive, a new treatment is being made available. Please hang in there, my friend. We are all here for you. Don't forget to let us all know what onc says on Wednesday.
Many hug, Debbie
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Woody,
Glad you are able to spend a few more days with your son...our "babies" are such a help to us when things are rough. Sorry you had to have some time in the hospital and praisng God that you are now out and feeling better. I am enjoying time with my brothers...it's the first time the three of us have been together in 30 years! Took a couple days trip to Big Bend National Park...the desert is in bloom and beautiful...neither of my brothers have been, so it was especially nice to share with them. Still have another week to spend with them and are relaxing at home and showing some of the local sites. Thanks for remembering!
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Thanks JFL, but I'm in my mid 40s now and don't want to join a group that is not within my age group. I guess there is a reason they have an 'under 40s' group.
I do appreciate your reply
Bonnie
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Having a hard time after finding out about my liver mets. Took an Ativan at bedtime for first 3 nights, it helped a lot to feel better and get some sleep. However due to it being so highly addictive I just took a Trazodone (non addictive sleeping pill) the next night. That night I was ok but the next day (yesterday) the anxiety was unreal with a touch of depression I think. Last night I took another Trazodone to sleep and was ok till this morning. More issues filing for my appeal of CPP Disability today and that gives me more anxiety issues. Finding it so hard to cope I called my doctor, see him tomorrow. Receptionist will send him a note asking if I'm ok to take another Ativan in the mean time to help till I see him. She will call me back hopefully. Lord! the stress that comes along with this diagnosis! I'm sure I'm not alone here! Feeling the pressure and this is not like me normally!Cathy
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Debbie - besides not working, navelbine landed me in the hospital twice with low counts. Tomorrow's the appointment with the oncologist and I'm very stressed about it, to say the least. I should be focusing on all the milestones God has let me be alive to see and do, but instead all I do is go to that dark place in me where all I can do is think about the end and the suffering and the things I'll miss out on. I am definitely not myself right now. Meds are not working.
Penny
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((((((Penny))))). I am am so sorry that you have had progression with your liver mets.
You mentioned that you had trouble with low counts when you tried navelbine/vinorlelbine. I found the info below about administering a reduced dose of this drug. You could ask your onc if it is possible for you to do this.
Dose Adjustments Based on Granulocyte Counts:
If the granulocyte count on the day of treatment is greater than or equal to 1500 cells/m3, then 100% of the starting dose may be administered.
If the granulocyte count on the day of treatment is 1000 to 1499 cells/m3, then 50% of the starting dose may be administered.
If the granulocyte count on the day of treatment is less than 1000 cells/m3, then do not administer. Repeat granulocyte count in one week. If three consecutive weekly doses are held because granulocyte count is less than 1000 cells/mm3, discontinue vinorelbine.
For patients who, during treatment with vinorelbine experienced fever and/or sepsis while granulocytopenic or had two consecutive weekly doses held due to granulocytopenia, subsequent doses of vinorelbine should be as follows:
If the granulocyte count on the day of treatment is greater than or equal to 1500 cells/m3, then 75% of the starting dose may be administered.
If the granulocyte count on the day of treatment is 1000 to 1499 cells/m3, then 37.5% of the starting dose may be administered.
If the granulocyte count on the day of treatment is less than 1000 cells/m3, then do not administer. Repeat granulocyte count in one week. If three consecutive weekly doses are held because granulocyte count is less than 1000 cells/mm3, discontinue vinorelbine.
Dose Modifications for Concurrent Hematologic Toxicity and Hepatic Insufficiency:
In patients with both hematologic toxicity and hepatic insufficiency, the lower of the doses based on the corresponding starting dose of vinorelbine as determined above.0
