How are people with liver mets doing?
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Carla, check this thread, it may get you the information you need. Prayers and love.
https://community.breastcancer.org/forum/8/topic/7...
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Freebird...I hope Halaven works wonders! I know many have been on it on the boards. Praying for you!
Jaytee...I always got my neulasta shot right after chemo-Navelbine, so no going back the next day. The one time I did neupigen I had to go in for 3 days but never Neulasta. They told me they'd changed protocol since I'd had it in '09...maybe worth asking about?
Still nursing back...better tho. TM's from Wed came back good so...less stress
TGIF...anybody feel like that besides me??? SyrMom...how are you feeling?
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Thanks RonnieKay
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Freebird, I hope that this new med will be very successful. Hope this has eased your mind a little bit. My thoughts will be with you.The nurse navigator called me today and got all my prescription information and I will be getting Xeloda. She had to get in touch with the pharmacy company as it has to come from a special source. Not all pharmacies stock it. I think she said 3 pills twice a day for 2 or 3 weeks,(not sure about that) and then off a week. I found a thread on this site about different ones who have been on it and a lot of information about it. I also found a site with a lot of testimonials and it sounds like it is very successful. Lots of side effects, tho. The main one that most people mentioned is the hand and foot dryness, peeling, redness and general soreness. And, diarrhea was another one. Most of the others were the general s/e of most of the treatments. The diarrhea will be the one that will worry me the most. When I get nervous, I usually will have it. Then, I worry about getting somewhere and having an accident and that starts a vicious circle. LOL Someone mentioned to get in a stock of Immodium. But, the nurse was very nice and said she would go over everything with me when I get the medicine. I also have a transportation problem. But, she also told me that that can be worked out also. I have wonderful family support, but do have a hard time arranging rides to doctor's appointments. Blood work I can have done on Sat. mornings with no problems with getting a ride. My oldest son's wife has her own business and she can get off most of the time, but there are times when it isn't a good time for her during rush times.There is a county bus that I can get at certain times, but doesn't always work out with the scheduling of my appointments. But, my 2 daughter-in-laws have told me that it will all work out. So, I do feel a little less stressed tonight.
The doctor had also mentioned an injection of a bone supplement. And the nurse told me that would be Xegeva. A few years ago, after I was on Zometa for a long time, I got that jaw bone necrosis and that is when I was put on the Faslodex. They had mentioned Xegeva at the time, but it also causes the jaw bone necrosis. So, I mentioned that to the nurse and she said she would have to talk to the doctor and see what he says about that.
I live in Central Maryland, about 30 miles west of Baltimore, and they are calling for more snow tomorrow. Today, it never got out of the teens as far as the temperature goes. They are predicting a pretty good amount of snow. I am so sick of the cold and the snow. My son and I were supposed to go visit my 2 little great-grand daughters this afternoon and take them all out for supper, but it was just too cold to take the girls out and for me, also. I was so disappointed as I have not seen them since Christmas. They live about an hour from me. The oldest one is 2 1/2 and the baby is almost 3 months. They are so cute.
Hope everyone will have a good week end.
Joy
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I started out with xeloda when I was first dx back in April 2014...I had 3 rounds...17 days on 7 days off...until the se of the diarrhea caused me to have a perforated bowel... I almost died from it.. it caused a infection..I have a history of diverticular disease...So I even continued after having 2ft of my colen removed and a colostamy bag...then I refused to due round 4 cuz it was making me feel life less...I felt like i was dead...so I told them to either give me another treatment...cuz I refuse to take this xeloda...it was a very bad experience for me...
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Freebird, I am sorry to hear that you had such a bad experience with Xeloda. My thoughts continue to be with you.Joy
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Hi to all! Been an absentee again for a while, but glad to be back on. Had another scare that I think will turn out alright. Went to a followup with my regular doc and he said "Oh, when you had your chest CT scan from pneumonia, we notice multiple nodules on your thyroid and one of them is 2.6cm." Really???? Geez...so I have had an ultrasound and a fine needle aspiration and am waiting for the results. Always something to add to the fun! Had my scans today to see how the chemo is working on the liver mets and will get results on Monday. I don't have a bad feeling about the thyroid nodules...you know how you get that gut feeling when something is about to go wrong? Don't have it with this, so keeping my fingers crossed and trusting God that this is just something benign. If it gets too big, they will remove so that it won't interfere with talking and swallowing. My onc says it would be super rare for breast cancer to metastasize to the thyroid, so am hanging on to that, too.
Glad to see that others are having such great results..WooHoo!!! We are the warriors fighting this battle with spirit and hope. Love to all...will update on Monday evening after scan results are back!
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Freebird,
I too had a bad experience with Xeloda. I'm one of the few that had a rare reaction. It actually caused my coronary arteries to spasm and cut off flow to my heart. I had three "heart attacks" within a two day period...will never take Xeloda again!!! I know it is working for alot of people, but it's definitely not for me.
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Chichi, i see you have been busy lollll. I am glad you are feeling ok about the thyroid , i believe it is begnin also , and since you have a good feeling about it then it must be nothing. i do hope nevalbine will give you excellent results , it has worked for a lot of people. We missed you here Chichi so do not forget to pop in monday to give us yourscan results . Crossing my fingers they will be good and my prayes are with you. Xoxox
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Joy78,
I took xeloda not long ago , unfortunately i did not work for me. But i did not have a lot if problems while on it. It gave me constipaton instead of diarrhea lollll and my hands and feet were a bit dry but ok . I also take xgeva every 4 weeks till now i have no problem with it either. While xeloda did not work for me completely , i say completely because it has some kind of mix response which my doctors did not like and consiered a failure. But xeloda did wonders to others . You can find a thread here it is called " all about xeloda" whoch will be helpful for you. It is taken twice a day and off one week. They may increase the dose later.wishing you good luck on the new drug and prayers it will do wonders for you.
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Thanks, Woodylb. I have been to the "all about Xeloda" thread. Thanks for mentioning that.I am going to give it a try and see what happens. I have read that most patients do have good results from it. So, we will see how it goes.
I had written a long message and it went out in "cyber space", so I will just get back later.
Joy
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J
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Joy..Your post went to cyber space-mine printed nothing, so I'll try again. :>) I'm so glad you can take xeloda at home & worry only about check ups w/your doctor, since transportation is hard...but I'm glad your DILs have assured you to not worry. Sometimes taking the worry equation out is a huge relief! You can do this...and I send my hope that ses are mild-or non-existent!!! I'll have a bone scan soon to see if I need to add zometa for strengthening & the thought of jaw necrosis scares me a bit. I have very good teeth & I want to keep them!
Chichi...absolutely not what you expect nor want to hear...stupid lumps elsewhere! My DS had uterine c and at her final check up after the hysterectomy, the surgeon told her the same thing...lumps that needed us. She's having her biopsy next week. She's in very bad physical condition so any procedure takes a lot out of her. I know what you mean about having that feeling...I usually had right-on feelings, but bc has messed w/my talents a little bit! Still...praying for good news!
I so wish the blasted cold would ease up on the eastern part of the US! I can imagine you're all welcoming spring....already!!! There are crocus blooming here & loving the early birds. We have a few resident eagles in the neighborhood & I love seeing them.
Have a great weekend all...whether resting, playing, watching tv, cherishing good days! XOXO
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Joy - Just wanted to let you know that I loved Xeloda. I didn't look or feel right for the first couple weeks but once I got used to s/e and my body got used to it, I was on it for a full year. I really hope it works for you as it is one of the meds that patients can go on again down the road. Good Luck.
Good Luck with the new meds, Freebird. I think of you often and really wish for you serenity and strength, both in your personal life and your medical life. This journey sure is not easy, is it?
Being a easterner, I'm used to bad weather...but I'm waving the white flag!! 6-8 inches of snow today, but at least it's a balmy 13 degrees. Better than the below -0- temps we've had the past couple days. Just crazy! Thank Goodness I still have a high school senior at home that can shovel for me...
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Woody,
Thanks...missed you all, too! I promise to update Monday evening.
Joy78...I didn't mean to discourage you about Xeloda. It works very well for lots of people and I pray it will for you, too!
RonnieKay...Thanks for your prayers and my heartfelt ones are going out to your DS. I know when your general health is not good, all this is much tougher. I have emphysema, so the chemo and tests, etc. make it worse. But, we take it as easy as possible and battle on!
Benjnate...hope the warm weather comes soon. My daughters and grandkids are all in the Pittsburgh area and the temps and wind chills have been below zero for so long there. School has been cancelled numerous times...too darn cold. Here's to SPRING!!!
Happy weekend all!
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OMG benjnate...DH and I grew up on the eastern side of WA state...a different world weather-wise from the "balmy" western/Seattle side. We had Weather there..not as extreme as yours but snow & holy crap cold. DH was the youngest in the family and when he was in college, 60 miles away (at Gonzaga, ranked #3 college bsktball, sorry..we're sports nuts...from Seahawks to college ball), his mom would call him on Sat mornings to "get up & come home...your dad can't shovel this snow!" Yep..60 mi drive in snow to shovel snow. So, make sure next year your baby doesn't go too far away so he can come home to shovel snow
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RonnieKayy and benjnate, I thank you for your very encouraging messages. I really do appreciate your comments.I talked to my sister-in-law a little while ago and she always wants to know how I am. I sometimes hesitate to tell her things, as she kind of has a way of making mountains our of molehills, but I decided to let her know about this newest problem. Right away she wanted to know if these new spots were related to "the black spots I had in my mouth a while back". At first I didn't know what she was talking about, but then it hit me, that she meant the jaw bone necrosis. After trying to get through to her that I did not have " black spots in my mouth " and not related to that problem at all. She gets things mixed up a lot, and that is why I am always hesitant to mention anything to her . But, she is so good to me and has always treated me like a "sister" instead of an "in-law" and we are very close. And, this pertains to all of my SIL's. I was an only child, so I married into a big family and we are all close. But, I am closer to this particular "sister". Anyway, I got her straightened out. I know most of my family truly don't understand my whole medical history and it just seems like too much trouble to go into trying to explains everything. Even tho, my family are very supportive, I don't think they fully understand everything. And, I just have a tendency to kind of keep things to myself. Just gets tiring trying to make people understand things. I think the fact that most people, when they hear "CANCER", they right away think the worst.. And, that is sure not the case. We all are just "living with Cancer". The general public just doesn't realize what treatments are available and how far the medical field is advancing every single day. I had a nurse tell me that there are so many new drugs and treatments coming out every day. I remember reading that eventually, cancer will be treated as a chronic disease, just like Diabetes or Heart Disease. I have a great little pamphlet that I picked up in the doctor's office called "Guide to Metastatic Cancer....Moving forward with hope. It is a Health Monitor Network publication. It is just so encouraging to read.
I have rattled on enough. It is still snowing to "beat the band".. At times, I cannot hardly see out the window. Not sure how much we are supposed to get this time. Glad I am staying put, all bundled up in my nice warm, fleece robe. Am reading a good book on my Kindle so will get some lunch and then curl up with my book.
Have a good day.
Joy
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Here is a link to the little pamphlet I mentioned about. Hope it works. You can flip through the pages by clicking on a little tab on the right side of the page.0 -
I have had the BEST week. As I told you, on Monday I had my granddaughter's Prayerbook Party. Well, a few days before that another DD called and said my other first grade granddaughter had hers on Sunday. So of course I went to that, too. The children were adorable, and they are all so excited to have their VERY OWN prayerbook. The retreat I told you about was also wonderful. The hotel spoils us, and the various support sessions and activities were really good.I came home much less anxious and able to face the biopsy (sort of) and the new chemo.
Of course, as a former English major I can tell you that "less" is a comparative term, so "less anxious" doesn't mean not anxious. So I'm calling tomorrow morning to ask if I can take Ativan or Valium before the procedure. Yeah, better living through chemistry.
Leah
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Leah
I asked that question before my first surgery, they said they prefer I take it, they like relaxed patients. Xanax works for me
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Leah...I'm happy you had a wonderful week!!!! Two first grade grandaughter's!!!! Aren't they just so sweet
. Tell them their "aunties" around the world are proud of them! And how nice you were spoiled at your retreat . I'm praying for lots more special events in your life 0 -
Leah, It sounds like you have had a lovely time this past week! What special moments to share with your granddaughters! The retreat sounds like bliss.
My sympathies go out to all those dealing with the adverse weather. I hope it lets up for you soon. We have had a week of good weather here but now it is breaking down. Still mild but lots of heavy showers and high winds in the forecast.
Since yesterday morning I have been having a lot of pain in my hip. I had to phone my daughter to come around as I went upstairs to use the toilet and couldn't get down the stairs again. She was not best pleased as she had a lot of work to do and succeeded in making me feel worse. I wish I didn't have to phone her but I was in trouble. I am going to call my onc tomorrow and speak to him about scheduling a consultation with the surgeon who inserted my femoral rod last year. Just wanted to know if he had anything to add. I am taking paracetamol, naproxen and today I have my final dose of dexamethasone which should help with the inflammation. Also, using stick on heat patches and microwavable heat pads and they seem to be helping. There has been no change to the pain in my back so I am pretty sure this all related to my leg.
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Leah, you sound ,like you had a wonderful time and came back refreshed . Good luck on your biopsy and i hope you will feel less stressed withsome calming medication. Keep us posted. My prayers are with you.
Springwatch, i am sorry you have to deal with bad wheather and pain. Hopefully, you will soon find out what is the problem and get treated to become pain free. Hugs.
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Springwatch, Oh no! I have a two story house too and got sudden hip/upper leg pain about 2 weeks ago. Watching me get up and down the steps was quite comical until I got on meds. Long story short, tumors in that area, but that awful Adriamycin finally started to kick in and I'm feeling a little better. So I guess it's really not that awful
My Onc talked about starting me on radiation and that may still be down the road, but for now I don't need to use the walker anymore so we'll see. Good Luck to you and your hip pain.Can I just say - 30 degrees in Central PA at that moment!! A heat wave, lol! Thanks for all of the shout outs of support!
Leah - When you're lying on that table tomorrow for the biopsy, just keep thinking of those beautiful grandaughter's faces. And if/when anxiety starts to take over, gently push it away and bring those little faces back into your mind and keep them there. You've got this, girl.
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I like that visual for you, Laura. Sending love & hugs for a smooth procedure & helpful news!
Oh Spring...I'm sorry for such pain & I'm glad you'll talk to your dr tomorrow...will wait to hear if they can see you soon. It's all concerning...and that there's no pain relief can wear you out. Is it possible that you're feeling your DD is more frustrated than she is, because you're feeling helpless w/pain? There are some times my kids ask for help & tho there are things I should be doing, I help out. I always try not to show that...but it may be a maturity thing. Think of the years you were your DD's everything...and call her when you need to....and don't feel bad
. Sending XOXO0 -
Kjones-
Beyond thrilled with your scan results!!! That is so amazing!! Doing a little happy dance for you!!!
Hugs-
Lindsey
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On the subject of pain, anyone had a back spasms lasting more than a couple of days? I vacuumed either Tues. or Wed. and on Thurs., wham! Been in utter agony since; can't drive, nothing! Friends stopping by to help with stuff that requires bending, etc. Tried Lidoderm patches, Lortab, Tylenol, nothing helps (can't take ibuprofen cause of chemo); today I remembered I had some baclofen from when I had radiation - that has helped calm things down just a little. Of course my biggest fear is a fx & I hope to goodness not. Back in precancer days I'd load up with anti-inflammatories and eventually be o.k., along with the help of a chiropractor, but can't do either now. My spine is full of mets. Have chemo tomorrow, so I'm sure it will be addressed one way or another. But curious if anyone here has had days of spasms before getting any relief. This really sucks & is scary as h*ll.
Regarding Xeloda, did nothing for me except give me a bad case of hand/foot. However, many women on the Xeloda thread have had very good luck with it and some have taken it for over a year & remained stable!! So you never know!!
Regarding Halaven, there are 2 great threads: "Halaven-Day 1" and "Havalen What to Expect" (yes, Halaven misspelled). I've read it all & it's helped immensely.
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SyrMom...I know on chemo, when I went all out cleaning, I spent days recovering & had spasms mostly in my legs. One time my knees bled from mopping 3 tiny rooms on my knees. I don't have spine mets...but I can imagine how much pressure vacuuming would put on your back. I know you want to do normal things...but prob time to take a break from those jobs. I'm sorry, hope treatment goes ok tomorrow, and they will put your mind at ease that you will recover
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Freebird, Sorry that the adriamycin has not done it's job but I have my fingers crossed that Halaven will turn things around for you. Sorry I have no experience of this chemo but I have been told that it might be in my future.
Regarding you eldest daughter, in your shoes I would try and ignore her behaviour. You have enough to deal with. I am one of three sisters. Our middle sister had a troubled relationship with our mother. Myself and my other sister do not really understand why she became like she did but her treatment of our mother was just awful. She blamed our mother for most of what has gone wrong in her life while taking no responsibility for her own actions. I cannot be sure if that is the situation in your case but if it is try and ignore it. It is not about you.
Jaytee, I hope you are managing your injections OK. There is really nothing to them once you have done a couple yourself.
Joy, Sorry you have had progression with liver mets. If there are two discreet lesions maybe they can do radiotherapy. It is worth asking. In the meantime, I hope the Xeloda works for you. It did nothing for me but I have heard some people get a very good run on it. We had a lady on this side of the Atlantic who got 8 years out of Xeloda following progression to her liver. As I said it doesn't work for everyone, myself included, but for those it does work for it works very well.
Chichi, I hope you get clear results on your thyroid. I had was diagnosed with nodules about 14 years ago. They were all benign thankfully and the doctor said that even if they showed cancer the cure rate for this type of cancer was very high. As that was 14 years ago, I am sure things have much improved since then.
Leah, What can I say but good luck with your biopsy today. I hope it all goes well and possibly gives you another line of treatment to explore.
Benjnate, Well it is 41°F here today so if I do step out the door I won't freeze or fall on any ice or snow. I do hope the weather improves where you are soon. That message goes to everyone else experiencing bad weather at the moment. I am still watching for signs of spring!
It seems a lot of us are suffering with back and leg pain at the moment.
I have an appt to see the surgeon who put in my femoral rod nearly a year ago but not until Thurs. evening. I am seeing my oncologist on Thurs morning so I should be getting any input from him before that appt. My painkillers are not really helping. It hurts to walk on it. This morning I woke up and it looks like I have half of Beyonce's butt stuck to my own backside. Definitely some kind of inflammation, but why?? I hope it is something easily relieved.
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Spring...I think you should try to get in before Thurs...especially if you have that much swelling (envisioning Beyone's skimpily clad behind!). Please
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