How are people with liver mets doing?
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Love the family photos - so cool to put faces to names! My oldest is home next weekend, I'm going to try to get a photo of both sons and will post.
Springwatch, I'm sure you are having a tension-filled weekend waiting for results. Scanxiety is the worst. I hope they call you first thing tomorrow with results and an action plan that will bring you comfort.
And Leah, wow. Hopefully that was just a fluke. Funny story for you - apparently I was delivered a Shelach Manot bag from my synagogue but it was accidentally delivered to my next door neighbors...who greatly enjoyed the 'hamentashen' cookies and other treats and thought it was very kind of them to give them that! She told me about it and I just told her how happy I am she enjoyed it!
Love to all,
Laura.
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Hello all,
This is my first time posting but I have been reading posts for many months and find great comfort in the support this site brings. I was originally diagnosed with Stage III BC 12 years ago. During my routine scan in May 2014 they discovered several small metastasis to my liver. I was immediately put on anti-hormone therapies and my cancer progressed. I had a good few months with Xeloda, but my scans on Monday showed aggressive progression in my liver and lungs and now I have fluid around my lungs. My onc wants to start me on Docetaxel ASAP. Throughout this whole process I have had very few symptoms. My onc makes it seem IV chemo is the last resort. I am getting a second opinion from another hospital as I am hoping to get in a clinical trial. I am scared about my quality of life as my onc said I would need to be on this forever. I am just still so shocked as I feel completely normal! Has anyone been told to go straight to IV chemo after the first oral chemo stops working?
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Infinitorthefoght03,
Sorry you had to join this thread, but welcome as you will see you will find plenty of support and kindness here. You mentionned you had after twelve 12 years seen liver spots and were started right away on anto hormonal. Was a biopsy performed on the liver in 2012? If not then this is all wrong , a biopsy should be performed to identify if the liver is consistent with your primary tumor 12 years ago , if it has changed or if it is another type of cancer all together. You are stage IV cancer and yes stage four unfortunately we are continously in treatment. It is crucial that you have biopsy performed on both liver and lungs to corrolate with your first cancer and see if it is the same or stauts has changed in term of ER ,PR, or HER2 or if it is totally a different cancer. Some of us started in stage four on chemo and others on anti hormonal , some on both some on other therapies. The main prpose of the therapiesare ti conain the disease or to stop progression , in very rare case to cure. It is along process and patienc is the key word. A lot of us lead almost a normal life. With some ups and downs of course.i urge to make sure you are well diagnosed and this includes biopsies so they can treat you properly. Chemo is a big part of treatment if this fails then you are put on trial medicat. i Hope this helped.
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The biopsy results show the HER2 changed from +1 to +2 (equivocal). So now there will be a FISH test to see if Herceptin will help. I sure hope so because it seems nothing else has.
I started the Navelbine last week. Not too difficult - sure hope it helps.
Leah
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Hi Leah longtime, i am glad you started nevalbine and happier it seems easy , it has good response usually , i hope it will do the same for you.,
About the HER2 status , i want to tell you i had the same results in my biopsy the first time it was equivocal and the FISH was done by roche and it came back negative, and did the test again on the same sample in beirut at the american hospital it showed +3 and seen by three different pathologists and because of the negative FISH they redid the FISH also and it came bacl negative. So i sent ot for an intelligent genomic test in Germany where they performed a CISH test and genetic testing it came back fully HER2 postive and my treatmen worked. I am ILC and ILC is never her2 + except for a very few numbers around the world. But the doctor in germany said the same sample could be depending on how it is sliced both her2- and from the Other positive it is called hetergenous cancer. I hope this helps you.
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Penny and freebird, I love your family photos. Freebird, your grandkids are so cute and Penny, your daughter looks stunning. Green really suits her.
Leah, I hope the navelbine continues to treat you gently and you plenty of energy after your infusions in the future, even if those spells of energy seem to be so unpredictable. It seems strange to be saying this but I hope your FISH test comes back +3. You will then have another treatment to try and which will hopefully keep you stable or NED.
Benjnate, Hope you enjoy your upcoming weekend with your eldest. My eldest daughter just went back home today. She has been here looking after me. My younger daughter takes over responsibility from this evening.
initforthefight, First of all welcome. As woody has suggested, you must insist on a biopsy of your mets especially as such a long time has elapsed between your primary diagnosis and finding the mets in your liver. They could have changed status. If you haven;t got it already email Bestbird and ask her to send you a copy of her Insider's guide to MBC. It has a lot of useful info. https://community.breastcancer.org/forum/8/topic/8...
I would not be too alarmed at having to switch from oral to IV chemo. Chemo is chemo, whether you have it fed into a vein or take a tablet. IV chemos are not the last resort as your oncologist portrayed them. I started out on IV chemo (taxol) then switched to Xeloda (oral) which failed and like you I had significant progression, especially in my liver. I am now on gemzar/carboplatin, another IV chemo, which was working well at my last scans. Most oncologists would treat with hormone therapy or herceptin, a targeted therapy first if your cancer responded to either of these treatments but many oncologists will start with IV chemo and then switch to hormone or targeted therapy after. There are no hard and fast rules. Treatment for mets is a forever thing. There are very few cures when you reach this stage. Maybe 1% or 2% and they are usually those who have ogliometastatic disease, a subset of cancer patients who have maybe two or three mets which can be removed or agressively treated. A very few people who are HER2+ have also been able to get a total remission of their disease.
Don't be too despondent at this time. There are plenty more treatments out there which can keep your cancer under control.
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OK. Update on my leg surgery.
It still hasn't taken place. My oncologist vetoed the proximal femoral replacement and we are doing the hardware replacement operation instead - femoral nail exchange. They are removing the old broken hardware and refitting me with a wider rod and screws. There is no guarantee the problem won't happen again but I am keeping my fingers crossed. I can't have any surgery until after the 23rd when I have my next whole body MRI to see how the chemo is working. The reason is the one I mentioned before; no MRIs within 6 wks having new metal work put in. My surgeon is leaving for a conference on the 22nd and won't be back until the beginning of April. This means I am booked in provisionally for the 10th of next month. In the meantime, I am to stay as 'non-ambulatory' as possible and under strict instructions not to fall over. I am taking a lot of tramadol which is keeping the pain under control and spending too much time in bed which is frustrating as I feel otherwise well. I am going to complete my 6th cycle of gem/carbo before my next scans and the surgery later. Until I have the operation, my daughters are taking it in turns to run around after me while I sit back and do nothing.
I went to X-ray yesterday to have a port check - it keeps refusing to let anyone do a blood draw, except on rare occasions. The radiologist gave it quick flush with saline and it gave blood at the first time of asking. It is a very temperamental port! The radiologist is happy for the port to be used still despite it's misbehaviour, which saves me having a new one put in. I couldn't have faced that with so much else going on.
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Leah
Praying for you that the Navelbine works and that you can get Herceptin.
I have been Her2nu+ from my original diagnosis in 1997. When my onc wanted to biopsy my bone mets in 2011 to see if I was still ER+/PR+ my results came back that yes I was still highly positive, but what a shock that my Her2nu came back negative. My onc said that is ridiculous that he was sure I was still Her2nu+ and that it sometimes doesn't show up in bone mets, but more likely in organs. I am not familiar with the FISH test, so really don't know how the testing was done. Luckily, however, I was able to still get the Perjeta and Herceptin since he used my original report from 1997 to request the Perjeta. And the Perjeta did help keep me stable, so I am sure that I am still Her2nu+ even though my bone mets didn't show this.
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Woody, thank you for the info on the further testing if the FISH test is negative. I'll talk to my onc about it after we get the results. The test is being done at Hadassah Hospital.
Springwatch, best of luck with the surgery. And thank goodness your port is working again!
Leah
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Springwatch, good luck on your surgery even thugh i think they are making you wait with all this pain. At leadt tramadol will relieve some of it. Meanwhile rest since you will have plenty to be busy about later. Hugs.
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L
Leah, you are welcome and i do hope it has changed in status as it will give you plenty of options and maybe NED. For me it gave me a new extention on life i hope it does the same for you. Keep us informed.
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I love your picture OBXK! You go girl. Good luck tomorrow. Susie
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apackoftwo, I am very sorry but OBXK, Karen, passed away on 29 December 2013. She was one of the original posters on this thread who sadly is no longer with us.
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I saw my onc for a few minutes today when I went for my tx (not a regular visit, a passing-in-the-hall talk. I told him I was dealing with the bureaucratic stuff for the FISH test. I also told him he was fishing for answers on this.
I love being a brat.
Leah
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Hehehehe good for you Leah sometimes being a brat can save your life ! They run away when they see me and they think twice before talking to me
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Leah, Very funny. Keep on being bratty.
Woody, Surely they don't run away when they see you?! You are their favorite patient! My mother made was a real pain in the A when she was in hosp after falling and breakng her shoulder. Rude and never saying thank you because the nurses had to help her - it was their job. By the time she left 6 wks later she had earned the dubious accolade of 'the patient we would most like to see go home'. I am sure you are not as bad as that!
Had my gem/carbo this morning and will have the gem only part of my cycle next week. Then scans to see if the chemo is still working. I will be getting 4 wks off treatment to prepare and recover from the operation at the beginning of April.
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Lollll Springwatch, i am telling you they run away but not because i am rude but because i don't let them get away with anything. So everytime i am there they have to prepare to answer all my questions and i do question everything they say , decide or do. Nothing passes without my consent , i found out this is the best way to make sure theydo not make mistakes and also to keep remonding them that i am alive and kicking lollll.
I hope your scans will give you good results and i am happy you get to rest before going to surgery. Keep us informed. My prayers are with you always.
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Woody, I thought maybe they ran away because they thought you were a difficult person, like my mother. Good to know that it is just because you are being your own advocate and making sure that no stone is left unturned!
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Lollll i know what you thought Sprinwatch this is why I explained lolll. However, my father is like your mom nobody wants to treat him he is very difficult and yells at everyone.:))))
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Woody, My mother passed away a few years ago but it would have been interesting to have put the your Dad and my mother together. Some people are not happy unless they have something to complain about.
I do pester my onc with questions, too but so far he has been patient with me.
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Hi Leah. I had my liver biopsy the same week as you to determine whether my liver mets were HER2. They have not responded at all to the last 3 chemo's.
I am still waiting for the results. Meanwhile I have had various tests ready for drug trial due to start 31st March.
I am desperately trying to regain my strength and appetite from a course of Halaven. It has been a month since my last shot and I am still feeling weak.
I will be interested to see what happens next for both of us.
X
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Oh my...talking about parents being ill! My mom was a pistol...I hung up on her a few times. We knew she wasn't well, not being herself & then she was dx w/lung/liver C, given 5 days to live. I said I knew 5 months earlier she was not well, because she was not happy at my DD's wedding. So when the whole family converged to spend her last days together, our SIL walked in and she said, "Sorry I was a bitch at your wedding!" We were all shocked...and my dear SIL said, "You were absolutely beautiful!" What a prince. She lived 17 days & taught us all how to say goodbye with grace, peace & faith.
Anyhoo...Spring!!! Sending my love & prayers for successful surgery...a strong leg w/no pain!!!!
Leah...glad you're feisty...that's a good sign & hoping the fish test comes out +. It's so amazing how helpful sisters are! As different as this stupid disease is for each of us, there are also many similarities & it helps so much to be in this together! I need to catch up...but love to you all!
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Finally some good news after blowing through 2 chemos since August & beginning Halaven in February. After only 2 rounds of Halaven, the liver mets are responding favorably! They are smaller and no new liver mets!! Thank goodness!! It's been so long since I had any good news. So far, since 2010, the only treatments I've responded to are femara, taxol & now Halaven. Scary, risky & weird, if you ask me. Consider myself lucky to be alive to tell about it!
Now if the back pain/spasms can only be figured out. Going on 3 weeks of pain. Little better, but not much - even hurts to drive. Had a MRI of whole spine, although every vertebrae has mets, no worse than the MRI in January. Having bone scan next week just to be sure no new mets in rib/scapula area. Otherwise, trying titrating dose of steroids to see if the inflammation will calm down. I still think it's the chemo - a side effect. My theory is the chemo makes the muscles so sensitive that the least little thing sets them off, because goodness knows, I didn't do anything strenuous!
Anyway, it's nice to have some weight off my shoulders, for now. It's been such a long time! Although I don't minimize the support friends give me and the hand they often extend, bottom line, it's hard doing this when you are dealing with it alone, on a daily basis. So glad you ladies & these boards are here!! Thank you.
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Spring, i am sorry about your mom passing away but humbled she dod ot gracefully. And yes it would have been interesting to put her together woth my dad , i believe there would have been a mutany at the hospital
). I hope you are emotionally preparing yourself for the op , god be with you.0 -
Mutherflush, i hope your biopsy results comes back with a new hope for a new treatment and that you regain your strength before a new treatment. Hugs and prayers.
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RonnieKay, may your mother's soul rest in peace , you always habe so much in common with all of us it is eerie lollll. You are right having each other here on BCO and sharing our experiences really does help us to understand and deal more with our disease. Xoxoxoxoxox
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Syrmom,
Yayyyyyyyyyy, finally some good news, i a, thrilled you are respnding to halaven and most importantly glad you have this boost emotionally so you can keep fighting as you always did. I agree with you chemo does cause bone and muscle pain , i had the same when i was on chemo alone and kept having bone scans and CTs which never explained the pain. I hope the steroids will help with the pain and calm down the flare. Hugs and prayers that you will continue to do well on this regimen.
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I'm chiming in with Woody, SyrMom, hooray for Halaven kicking liver mets! Hoping the bone scan shows nothing new. It's hard to deal w/unexplained pain...physically & emotionally...and there's so much of it when chemo is killing good cells with dreaded bad cells. I hope the back pain/spasms subside soon!
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SyrMom - thanks be to God! Yay! :-) Penny
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SyrMom, At last something that is working on those liver mets! I hope it continues for some time to come. I think the pain is probably related to the chemo. Muscle and joint pain has been reported as a side effect of halaven.
Motherflush, Good luck with the results of your liver biopsy and the drug trial starting on the 31st of March. It is scary when you are starting something new and hoping.
Woody, There probably would be a mutiny at the hospital if your Dad and my mother were there at the same time. My mother was no saint, far from it. It wasn't just the medical people that had a bad time with her. She often threatened to kill me and told her friends and doctors that I didn't look after her properly and was a very poor carer. The first time my sister took her to an appt., the doctor asked if this was her other daughter. My mother responded, "yes.... unfortunately". You get the picture.
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