How are people with liver mets doing?
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Benjnate,
Even though it is a trying time for you , i am glad you are moving close to your familiy and doctors. I hope your body whole scan will show at least stable results. Keep us posted . I hope the move will be beneficial for you. Keep us posted.
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Maybe you've seen this button before, but it's my first time. I thought it was cute, so I'm sharing:
:-) Penny
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Spring...I'm glad you're feeling better (with JUST hip pain & chemo fatigue...that would put most people over the edge!). Ugh..what does this new finding mean? I just pray surgery begins a new healing process so you can be free of that pain & move about any way you want!
Benjnate...I'm hoping the house sells quickly...maybe today!!! Being closer to family & good doctoring will surely be wonderful support! I hope the boys are excited...although I moved teens & every now and then (20 yrs later), I hear about it! Prayers for your scan to go well. I never had Red Devil...no lymph nodes involved with first 2 dx (so thanks capillaries...for taking pesky cells to my liver!)...but I know it's tough stuff.
My head is spinning. So much going on. I've been Gma in a big way the last few weeks, helped DD clean a very "not clean" house (she is the breadwinner & works long hours, DH is an artist...would be starving artist if not for DD), babysitting...which I love, preparing for DS's family visit Easter week, tx, dentist, etc. It's all so good and not a day goes by that I don't thank God & family & YOU, and meds...but I have a headache that won't leave me. I'm finding myself much more forgetful and grasping for words/thoughts lately. It's very strange...now that I've been off Navelbine for 5 months. So Penny....I love your button!
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Lolllll Penny cute button , i love it !
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RonnieKay,
You seem to be busy on different fronts , god bless you ! But i am worried about your persistent headache specially if you are grasping for words. If it persists check with your doctor, don't be a champ. Big hugs .
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Hello ladies,
My biopsy finally scheduled for next Tuesday, 24 with possible RFA (Radiation Frequency Ablation?), did anybody had that done, whats your experience/advice, any input please, will appreciate it very much.
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Ella - I had it done twice. Sometimes the IR (Interventional Radiologist) will use ultrasound to guide the stereotactic needle, but mine were done using CT scans. The liver area is numbed up and you're given twilight sedation. They wake you up periodically to breathe so they can locate/burn the area. Depending upon the size/number of mets determines the amount of time it takes, but I think @45 minutes is the average. Recovery is easy. They keep you in a room for about 4 hours before sending you home. The IR will probably scan you about a month afterwards to see how well it worked. I did not have a lot of pain at all. God bless you. All will be well. Keep us posted.
:-) Penny
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Thank you Penny!
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Ella,
Good luck on your RFA I hope the outcome will be beneficial to you. God bless. Keep us posted.
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Wow, so much activity on this board, welcome to all the new folks. Sorry you find yourself here, but believe me, it will give you hope and support, no matter what else.
Been so busy with scans, that lost track for a bit. In past week had CT Chest/Pelvis, MRI whole spine, Bone Scan (still waiting on results), chemo, PT .... you know the drill. Known extensive mets throughout spine & skeletal, but question is is there something new causing this new onset of pain I've been experiencing. MRI indicated edema throughout, suggestive of sprain throughout; only thing is I didn't do anything! Going on 4th week of pain, somewhat better with titrating dose of steroid. I still feel in my gut it has to do with the chemo & what it does to the tissues, muscles, etc. Just haven't been able to figure out a way to try and offset it & no one seems to have a clue either.
Spring - sacral break!! Oh, my, so glad your ortho saw it b4 surgery & despite all of this you say you have been feeling well, thank goodness!! Hope your scans showed positive results as well. At least heading into better weather should help with navigating, rather than dealing with ice and snow! Pls. keep us posted.
Laura - Hope your full body scan was uneventful and some answers are at your disposal by now. I understand the pain factor and how scary it is, especially a fast onset. Also, the tumor marker rise, mine is always an indication if it's a constant trend up month after month - ugh! Had first decrease this last week, after an increase 2 weeks ago! Usually only run once a month, but since the CT showed some regression it wasn't adding up, so I'm glad to know at least for now they dropped some. Not in "normal range" yet, but I'll take what I can get. I, too, hated adria & was not sorry to see it go, just freaked that that it was another chemo I blew through within a couple of months and considered one of the best for breast ca since the early days. However, never felt good on it no matter how hard I tried. I still maintain the chemos are at the base of my pain, but I'm repeating myself, sorry, chemo brain defin. at work too!
Ronnie, pls follow with your provider re the headaches, etc. I get word find issues now from chemo brain, but with a new symptom of headache, don't delay - I know it's scary & I hate pursuing these things, but as you know, the sooner there's some kind of explanation, the better. For me not knowing is worse than the knowing.
hydeskate, I am so glad you told your story!! Wow! NED since 2009!! That is just something else & to have started with mult areas of mets, liver, lung, etc. You defin. will be a source of hope and inspiration to me that it's possible to get NED or at least stable. I would be over the top if these liver critters would disappear!! Felt I was almost there when taxol stopped working - just crushed me as it was 2 weeks b4 my daughters wedding in August! From August till last month, NOTHING had touched them & progression - now I'm getting a positive response from Halaven!! Thank goodness, but it was a long time progressing & my liver has more progression than ever, but there's at least hope back.
To the newer folks to liver mets. Yes, its a shock! I began Stage IV right from the start with mult bone mets & later moved into liver. However, don't let anyone give you an expiration date!! You can see from this board and others like it, there's no way to know. As far as no second opinion because you are on a chemo, I think that is craziness myself. Of course you will be on chemo or some other treatment, you have Stage IV!! I would suggest seeking out a cancer facility, especially one that may specialize in breast cancer. They are all over & I don't know them all, but I did have several second opinions & will continue to, depending on what's going on. One of them was at Dana Farber in Boston. I wanted to see an oncologist who had spent their whole career with breast only. Another one is Sloan Kettering, in NYC - but they are all over the country. I'm sure someone could help point you to one on your side of the country.
In terms of dealing with side effects from chemo - there are many meds to help with the nausea/vomiting, etc. Do not keep silent - you need to find the right combination for yourself. The premeds they give IV b4 chemo are important & can often offset many of these symptoms. Then there's the possible constipation or diarrhea issues that can come - there are many ways to handle that as well - many solutions on these boards. Same with neuropathy, dealing with hair loss/wigs/etc., cold capping, on & on. So hand in there & stay close & keep us updated - I know everyone here will either have a suggestion or a place to point you to for the assistance you may need. I've been doing this since 2010 & there's quite the learning curve involved as most are mainly aware of the lower stage "curable" breast cancers & have no idea how this is different & ongoing. So down the road you will get a lot of questions as to when your treatment ends & all that kind of thing & a blank look (sometimes as if you are lying) should you indicate treatment is ongoing. I remember when my tax person thought I was making it all up because I "looked so good." Really hurt my feelings, but I understood on one level. Then, sadly, 2 years later ended up with lymphoma himself - doing well though - but he "looks good" too! Needless to say, he was very apologetic.
Anyway, enough from me. Hoping to hear good scan results from everyone as well as my own! Happy Spring, (still in 20's here!)
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Great info SyrMom...stage 4 is a daunting place to be, but you've definitely paved a road for our new sisters. I'm sorry you're still having such pain. As far as scans not showing a definitive cause...I think you're right that chemo can makes us susceptible to injury/pain with the slightest movements...ones that, in the past, seemed normal. I was always on hypertime....constantly taking a mental note of how I felt-whole body-wise, trying to regulate life according to how I felt doing everything. Is it possible you've overdone activity without considering it stressful to your body? I think the horribly cold weather can't help but add to the soreness...20 degrees in March is not right! Thinking of you!
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Oh yes, Woody...it's been too busy & I don't see it getting too much easier. Now, I add a new dental crown. I'm losing my cobra ins (dental/vision) after 18 months so dentist is replacing an ancient crown. Since ins ends 3/31, I need 2 appts til then...but at least my teeth/gums are healthy! I think headaches are allergies..but recall does stink! Vision is blurry...allergies??? I don't see the onc for a few weeks but dexa is 4/1. Don't think scans til May. I saw Bestbird posted of a webinar tomorrow. I wanted to listen but busy during eastern time. I did watch the VICE show...so glad you told me about it. My onc keeps talking about a vaccine....hopeful always!!!
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Syrmom,
Great info for all those who sadly joined us lately , but what a wonderfu and hopeful way you put it! I am so happy you are geeling like yourself again and happier with your news. I hope you soon finf out what is causing you this pain, i happen to agree with you about chemo and pain.
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Ronnie,
I am glad you are that busy, but please do not over do it and tire yourself. Evem though your headache may be due to allergy , still i would inform my doctor when i see him
. I am so happy you found VICE. As hopeful as i saw it, even though they do not mention BC. Still plenty of hope to a lot of people with incurable diseases. I am going to lebanon for my perjeta , i leave saturday and come back on the 30th. The funny thing is after i made all the arrangements, they called me next day to tell me it is now available lolll. But since my hear was set on seeing my son , so i am going
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Im new here in this group, recommended by penny. I was dx with mets to the liver on Tuesday and oncologist wants me to have cyberknife ASAP. He thinks that can eradicate the two small lesions, but the cancer will always be in my body since it spread???
Has anyone else had Cyberknife? I'd like to know what to expect....
My full pathology came back today and I'm no longer estrogen positive. My oncologist did say that they are retesting HER2 (not sure why), other than that, he thinks I'm triple negative now and told me it's no longer necessary to keep taking my Aromasin.
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Hi bonski!
Go for the cyberknife! I haven't had it but would in a heart beat if it was offered to me. I hope and pray that is is very effective for you, especially as your mets are still small. Your onc is right. Once the horse has bolted he is more difficult to deal with. Only about 1% are cured once they get to stage IV but many, many here have lived with liver mets for years. You only have to read through the forum to see this has happened more times than you would expect.
Your dx sounds similar to mine. ER+ at primary at primary diagnosis and TNC when I had my bone biopsied for my stage IV mets. I took arimadex (anastrozole) for three years and was told I should discontinue once we knew the ER status has changed. It clearly wasn't influencing my cancer or I wouldn't have gone onto develop mets.
Your onc is retesting for HER2 as it can change status from negative to positive and visa versa. I have read that this particularly true with liver mets, occurring in about 25% of cases. Being Her2 +ve can open up a whole new lines of therapy which has been shown to be very effective.
Good luck and please let us know what the cyberknife was like.
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Benjnate,
How did the viewings on your property go? Have you had the results of your whole body scan come back yet?
I think you are doing the right thing moving nearer your family and doctors, particularly if the winter weather is bad.
Ronnie, You are so busy! I would check with your drs about the blurry vision. If you have had it before from allergies than it likely to be the same cause again. My eyes have been very dry and itchy. 80% is probably pollen allergy and 20% chemo, I think. It does make my vision blurry at times. With all our concerns of cancer, we can lose site of the fact that we can still get the run of the mill illnesses, such as cold, flu and allergies. You mentioned zero lymph from your previous biopsies. Researchers are looking into this. The theory is that having lymph nodes is a positive. Lymph nodes are doing their job catching these rogue cells before they spread. So now they have started to ask what is special about the cancer cells from people who have stage iv but no lymph node involvement and if they find the reason, could it become a new way of treating the disease?
SyrMom, Are they going to do anything for you apart from the titrated steroids? Sorry you are suffering.
I saw my orthopaedic surgeon yesterday. He wants me to have a CT scan of the fracture in my pelvis. The radiologist's report said it could be a fracture or it could be a recurrence of the cancer in that area (inflammation). It was a known met site when I was first diagnosed. The surgeon is pretty sure it is an insufficiency fracture from the disease and previous radiotherapy to the area and the radiologist is just covering himself by suggesting the CT to get a differential. The MRI of my femur showed NED so that lends weight to the fracture hypothesis. I probably won't get the result until after the weekend. He is in OR all this afternoon and evening.
Anyway, I now have a whole 5 wks off treatment. Next week is the normal week off in my cycle. Then two weeks off before surgery to let my bloods recover in preparation. Another two weeks off after for a bit of healing. it is the longest I have been off treatment! I have a whole body MRI on Monday to see how the gem/carbo is working but as I feel reasonably well, I am hopeful. My eldest is coming for a visit next week and staying until after Easter. She has morning sickness and is really suffering with it. They sent her home from work twice this week. Running around after my 3 yo grandson isn't helping matters when he is not in nursery and she needs to rest. I am trying to be sympathetic but I may not be doing a good job. I am getting excited by the prospect of a new grandchild.
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I didn't get my Navelbine yesterday - neutrophils were low (not overwhelmingly low but too chancy for tx). So I don't like the fact that I had to miss a tx. On the other hand, I'll have more energy for stuff that I need to do. Our holiday of Passover is coming up, and in preparation we clean the house of EVERY CRUMB of leavened food - think spring cleaning on steroids. I've hired someone to help me but there's a lot I do also.
Sppringwatch, enjoy your tx break. And enjoy your grandson and the anticipation of another one! Grandchildren are THE BEST.
Leah
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Hello All - Well I am leaving the Adriamycin world and onto the Halavan (Eribulin) world. I was only on the Red Devil for 10 weeks (of hell, can I just say!!) but I'm sorry that I blew through another one so fast. SyrMom, I see you posting on the Halavan page and you give me inspiration! If we could just get those cancer buggers out of your bones, you wouldn't be doing too bad at all - and I absolutely agree that the Adria caused more harm than good in terms of pain/weakness...
I am getting a 3 week break before I start the Eribulin. That will give me time to really start packing for my move. Of course, it creeps me out as to what my body is going to decide to do with those 3 weeks - oh please, behave my dear liver! I am getting a liver biopsy next Friday so hopefully that will provide some insight as to what is going on. Oh yes, getting a little radiation to my upper thigh and pelvis due to pain. The party just never ends...
It's snowing like crazy here dear ladies, and I've got to get to the grocery store. And not just for bread and milk - the older son is coming home for the first time in 2 months so I need REAL groceries! Have a lovely weekend!
Laura
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Bonski88 - Anne, who used to come on this site, had a procedure to her liver met call SBRT (Stereotactic Body Radiation Therapy) and believes she is now cured. Is SBRT the same as cyberknife? Check out her website: http://www.butdoctorihatepink.com. Maybe she has a "contact me" link and you can ask her. I've had 2 RFA's (radio frequency ablations) and 1 series of Sir-spheres (Y-90). I will find out how the spheres did at my scan this Wednesday. God Bless you.
- Penny
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Laura, sounds like a good plan in place. I think compared to the Adria, you will find Halaven a bit more tolerable. For me, just getting my appetite back and enjoying food is a huge plus. Of course, we are all different.
Bone scan results showed lots of progression in area of ribs, so in for RO consult - still not convinced that's the cause of pain though, but will see & go through the motions. I'm not giving up Halaven for radiation, though.
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thanks to those who have replied....I'm new to this so I'm thankful for every bit of information
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Benjnate,
Sorry to hear that you blew through Adria and I hope Halaven works and is more tolerable. I had epirubicin when I was treated for my primary and hated it. As epirubcin is supposed to be more tolerable than doxorubicin, I can understand why you found it hellish. Take it easy with all the packing! Try and enjoy your short break before you start Halaven. Good luck with the liver biopsy on Friday. I hope the liver mets behave themselves while you are off treatment. Fingers crossed you get pain relief from some additional radiotherapy to your pelvis and femur.
SyrMom, Sorry that your bone scan showed progression in your ribs. What do you mean when you say give up Halaven for radiation? Do they make you stop chemo for rads? My onc has had me doing both simultaneously.
The CT scan of my pelvis ordered by my orthopaedic surgeon showed met activity at the site of the fracture. I have a whole body MRI later this morning ordered by oncologist to see how well the gem/carbo is working. The surgeon and onc have already spoken to each other. My onc wants to see what the MRI shows. The radiologist who read the CT is a generalist and doesn't see that many cancers, whereas the the radiologist who will read today's MRI is a specialist in reading MRIs for cancer, so we shall see. If it is cancer, the onc will arrange some more RT to my pelvis. The surgery is still booked about two weeks from now no matter what. Although I am apprehensive about the op, I am more frightened knowing that I am moving around on a leg which has a newly opened femoral fracture and is only being held together by a rod which we know is bent or broken! For now, I just need to get through today and the usual scanxiety.
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Springwatch - I can feel your tension right through my computer. Let's just get this done and you'll feel so much better knowing what's going on and if the original plan needs to be adjusted. Cyber hugs for you today, dear friend. Deep relaxing breathes and just go to your happy place...(for me that's remembering my little ones running in and out of ocean waves. Even the techs will catch me smiling sometimes)
Bonski68 - I know this will sound crazy for all of the emotions you are going through, but you are fortunate that your mets were caught early and they can ablate the liver. This wasn't offered until the past 2 years or so or I would have had it in a second. I was diagnosed in 2009 and honestly it is a whole new world for us and you have many opportunities that some of us with mets longer don't. I wish I could reach through the computer and hug you too, you're going to be fine. A whole new world? Ah yes, nothing will be the same. It's just a new normal.
Thanks everyone else for the kind words. I've shown my house 4 times already. Older son is home from college for a few days and i'ts looking pretty disheveled, hoping the realtor doesn't call to show the house for a few days. Interesting how when I get stressed about major things like high school son graduating and off to college, older son moving to Denmark to study this summer, selling house, moving 2 hours away, then the liver decides to act up. Hmmm....Even good stress is stress to this body.
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I was initially diagnosed stage 3B - did dense dose chemo, surgery, and radiation - 3 weeks after radiation I got scan results showing spread to my spine - now spine, pelvis, and alas, liver. But my reason for posting - at that time I decided to get a second opinion - I called myself directly to Stanford Breast Cancer Center and also UC San Francisco Women's Cancer Center. They were both willing to make an appointment for me and all they wanted was for me to sign a release so they could get my records. I do have medicare with AARP Plan F, which is good insurance, but I cannot imagine that any insurer would prohibit a 2nd opinion. Do you have a major med school/university near you? Not only were they willing to see me but they gave me appointments within a week of when I called. Someone else suggested you go through your primary care doc, and that might be a good idea. All of this is so stressful without having to fight to be seen or to gather the information you need to make informed decisions.
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Dear apackoftwo,
Those records are yours, you have a right to do with it as you please, and you are entitled for a second opinion. Nobody can deny it for you. Sign a release, let them worry about it, but you don't, you must to concentrate on healing. hugs and be strong.
Going for a biopsy/RFA tomorrow, wish me luck
Cheers,
~E
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Hi, all! Haven't been on in a bit and see lots is going on. I was given a month off from Navelbine because I started having cardiac artery spasms again. Thought that I would start to regain my strength and try again. Unfortunately, I had another artery spasm and another trip by ambulance. My poor husband is at his wits end, too. All of my cardiac tests have been good, so that's a good thing...echocardiogram is good and no damage to heart. Now we just have to figure out why they keep happening. I've started using Ativan and deep breathing when I first start feeling "wierd" and that is working for now. They think I may now be having panic attacks cause I'm so scared I'm going to have another spasm. Saw onc today and he agreed another month off from chemo will do me more good than harm and I am slowly trying to get my life back. I refuse to let this fear take over everything!!!!
A bright spot is that my brother has come all the way to Texas from Maine to spend a month with me (course the warm weather may be a little extra incentive! lol) and my other brother whom I have not seen in 30 years is coming this week, too. I am so excited to have the both of them here!!! I'm going to stay on my ativan, pain meds and amlodopine that they gave me in hopes of preventing the spasms, and try to just enjoy the time I have with them.
My love and best wishes to all...I will catch up on reading up as to how everyone is doing tomorrow...in the meantime, sending hugs and prayers to you all!!
Debbie
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Chichi, sorry to hear about your artery spasms, dang! Frustrating indeed!! Glad to hear despite it all you are feeling good, though. Hang in there & enjoy your family time & warm weather. Still snowing in upstate NY!!
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Thanks, Syrmom...my brother from Maine is soooo happy to be away from the 6 foot drifts and below zero temps...wishing you Spring!!!
Penny - sending prayers that your results are good after the Sir Spheres
Springwatch - Hope you are enjoying your break from tx...and a new gandbaby! Woohoo!! Excited for you!
Bonski8 - welcome to our club. You will love all these ladies and learn alot. I, too, became triple negative with the biopsy on my liver mets and went off anastrazole. Am taking Navelbine and it is working really well on the tumors...I wish the same for you.
Woody - So glad you are going to be able to spend some time with your son. Can't wait to hear back from you.
I know I have gotten to everyone, so I'll just send my hopes and prayers to all of you for a blessed week and good results for us all!
Debbie
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Had a scan this morning. The left lobe of my liver looks good, thanks be to God! That is the side that the radioactive spheres were put into @ 3 months ago (12/23/14). The right side is still hard to read due to it only being a few weeks out from the procedure. The doctor said that's normal and he will know more at my next scan in May, however, he thinks he sees little lesions that weren't there before, but again, it's hard to tell at this point. Next week I meet with my oncologist to see what she wants to do. I feel like I'll never make it to NED (No Evidence of Disease) and that "mixed results" or "progression" will always be my scan results. Not trying to be negative or pessimistic. I've been at this for almost 5 years now and realize that my cancer is quite combative, not that not all cancers aren't. It's just that mine happens to be made up of particularly aggressive stuff. I am so grateful to God for His Strength to carry me through this long. He has made good things happen from a bad situation. Praise Him!
:-) Penny
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