Chemotherapy for Stage IV
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Debbie, Thanks, I will try Kiwis. A lot of us are going to be on chemo the rest of our lives, but the good thing is, we have lives and face it, we gotta do what needs to be done. I was one who always said Never, No chemo for me, but I have sort of changed my tune since I am in no way ready for the alternative yet. Glad the Xeloda is working for you....that may be my next one.
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Hi Ma111,
I had 3 cycles of FEC for first diagnosis that had no result or side effects whatsoever except hair falling out. With the recurrence I'm now doing six cycles of Carboplatin and Taxotere (I went to NYC and found an onc there who recommended this - New Zealand onc said it was only used for ovarian cancer).
The first cycle worked really well for the inflammation. The next two cycles didn't seem to do anything but the fourth cycle worked again. Surgeon jumped in at this stage and I'm now recovering from mastectomy and skin graft and having final two chemo's. It's not much fun.
Hi Marybe,
Regarding constipation (insult to injury, I reckon!), I was recommended psyllium husks. I drink 1t in a glass of water three times a day and they work really well. I tried prune juice, magnesium and lots of others but psyllium husks are the only thing that have worked for me.
Thanks for this thread, nice to connect with others in same boat.
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Yeah with the being on chemo for the rest of my life. I know as soon as I go off it, its party party for the little cancer cells in my liver and breast. So I now know what that is like and I become very tired - like doing the dishes is like climbing Mt Everest - but Xeloda is great. I am very positive and hey my insurance company has paid out my life insurance - anyone else would think Darn, but I am so happy as now I can buy the house (that has probably caused the stress which has caused the cancer in the first place) and am happy as I have a 16 year old daughter who I want to make sure is set up if the worst should happen. It is funny though, I read Lance Armstrong's book and in it he made reference to a person who emailed him and said "You do not know it yet but cancer is a blessing" or something along those lines and truely I have been blessed with finding out who my true friends are, and having insurance companies wanting to pay me out left, right and center. I worked in Australia in the last 3 years and they have automatic insurance policies with their super funds and I am entitled to more money from them. Not that its all about the money but lets face it, it certainly helps. I am also reading spiritual books and have a friend that introduced me to that side of life about 12 years ago - I was a non-believer but when the music goes up unexplained when a song is played that her husband liked who died of MND not long before and other things it helps a non-believer like me to start thinking there is something to this.
So I am very positive and in some ways having this cancer has made me a better person. Sounds bizare I know and don't get me wrong I went though the Why me stage. But I am at peace with what is happening - albeit I am fine at the moment - I liken it to jumping off a 100 storey building, I have been to the 50th floor and am back on the 75th floor now a bit like a yoyo, and I am sure when I get to the 5th floor I will be thinking Yikes but until then I am alive and fighting but not to my detriment. Like I said I am positive and you just have to look at those positives. I don't work anymore so get to spend time with my daughter without the stress of a working day, just get to pamper her and look after her. I have a great support team and am happy. Anyway just saying it as it is. I admire you Marybe as you have survived a long time and are so positive and helpful in answering newbies on this thread. I hope all is going well for you and everyone else who writes here. It is hard to talk to friends without them getting all emotional so I really appreciate being able to say how I feel to others who I know will understand. Hope the kiwis work. Probably cost a bomb over there. But believe me much nicer than taking other stuff and a nice natural way.
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So I have been dismissed from chemo and on to surgery and radiation though I stay on Zometa for two years at least. I guess what I take from that is my doc thinks I have at least two years and that's a good thing! Scans show spine mets nearly gone though I am not fooling myself, I know that I will be back to chemo one day and nearly gone does not mean all gone. But hey, we feast on the good days, right?
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Anyone on Taxotere or been on Taxotere? I have been on Taxotere since May 2010. Started on traditional dosage plan and now on a a weekly dose (3 weeks on and 1 week off) with a reduced dosage level as the SE's have been a pain. I am not coming off of it because it is working very well on my liver and bone mets.
My question is has anyone had pleural effusion or ascites caused by taxotere? I have both of these and it seems to be caused by the taxotere. No malignancy in pleural effusion. My ascites is very mild but don't seem to be because of the liver because liver mets are way down and liver enzymes are fine. Just want to feel like I am not the only one to get all the rare side effects.
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Debbie, I was a newbie myself at one time and believe it or not some things are still new to me and whenever they start me on a new treatment I come on here and ask if anyone is on such and such and what can I expect, even though I already know not all of us get the same SE's. I loved what you had to say....I pretty much feel the same way and also know some people think I am crazy, but cancer by far is not the worst thing that even happened to me and I also feel it has made me a better person. I appreciate life way more than I used to. I used to just take it all for granted, now if I wake up in the morning and don't have any aches or pains and the sheets feel so nice and soft against my skin and it feels good to stretch, I think Wow, I really feel good today. I used to take the days I felt good for granted and never gave them a second thought. And I now love doing things for people....it just makes me feel really good and I am ashamed to say it used to be Me, Me, Me. Kiwis are not that expensive here....actually I have been on a fruit kick lately....love, absolutely love oranges, and also have found the fresh pineapple to be really good that they have in the groceries now.
I have never been on taxotere, Kelly, but my friend Lee was....hers was part of the ACT( or maybe it was taxol) regime and then she has rads....she actually did very well with it, said it was easier than the adriamycin. Once I had pleural effusions in my lung, but don't think they were caused by any treatment and now they are gone. Sorry I can't offer any info on taxotere, but Wow, you are from Liberty Twsp?....I actually think that is where my friend lives....I am terrible on directions and areas, but know how to get there....go via Vine St. I live in Pleasant Ridge so if you live where I think you live, it is not far at all. PQ2, Zometa is good stuff in spite of all the things they tell you about possible osteonecrosis and things( if people read all the info with any med they would be afraid to take an aspirin!)......I was on it for at least 10 years and am now on xgeva which is another biophosphonate (? spell? ).
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Marybe - I live pretty close to you. Small world.
I think most people tolerate taxotere and taxol pretty well. I think I am one of those rare cases. It is just so scary to say I have had enough of the SE's because it is working very well and my onc said I am a chemo only girl. I was on tamoxifen when 4 was diagnosed so my onc says the anti-hormonals are out for me. So I feel like I have fewer options from the start and don't want to get off of one too fast. But the peural effusions are getting old. I have to get both lungs drained every 3 months which I know isn't bad compared to others but I am getting sick of it....
Hope you all are having a good day.
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Hey I live in Seven Mile which is only about 20 minutes from Liberty Township. I have not ventured onto the stage IV boards yet but it is time I got started. Today I switched to a new oncolgist and i am so excited. I have left the UC cancer center and moved to a private practice. I have learned more in 1 hour today than I have in 5 weeks at the other place.
I am Stage IV from intial diagnosis with mets to liver and lungs. Large breast tumour embedded in the chest wall. The 1rst onc started me on neoadjuvant TCH before he knew about the mets. After the Pet results he decided to continue as I have had little or no SEs. They are going to scan after the 3rd treatment to see if everything is responding.
new guys says Stage IV chemo is looked at entirely different. Old onc said they would take out a big piece of liver and lung in May and at that point I woud be "curable". New guys says I have chronic systemic very advanced cancer and would probably be on something the rest of my life. He said to talk about any surgery this early in the game is crazy. He said both those surgeries are horrific recovery times and I would have to be off chemo the entire time. Also the fact that I have malignant nodes in my trachea area makes it bad news also. None of it was easy to hear but at least he was straight with me.
He has 2 clinical trial in mind for me that are running locally. He said he wants to think about it over the weekend and let me know monday. I am a big ole sturdy girl healthy as a horse and just starting treatment so he says there is always a place for people like that. 1rst onc wouldn't even consider itfor me.
Also new guy was shocked they had run no tumour marker tests. he is sad he will have no baseline to compare to. 1rst guy says they place little faith in it so they don't do it. In my lurking I see evrybody listing their numbers so i will have to find that thread to get a better understanding.
I feel more calm and confident after 1 visit with this guy-he is young and engaged and LISTENED to me. the other guy just seemed to dismiss most everything I asked. i have worked hard to educate myself and it bothered me that he was so skeptical of everything I asked. it is scary to change oncs in mid course but from what I have been reading on here I knew I wasn't getting what I needed.
Hope to continue to learn as I still consider myself a newbie
He a
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Lilylady, Your new onco is right....it should be treated systemically as a chronic disease because face it Stage lV is not something we are going to get rid of. I have been Stage lV for 13 yrs now and am still learning things and getting new information from this board.
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Oh Marybe,
I hope to live as long as you have.. I know it is not easy, but you are my hero...
please continue to give us hope and encouragement...
Thank you,
Hattie
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Hello ladies,
I have just started chemo after a year on Femara (very sad to say goodbye to my Femara QOL). Anyway, I am on weekly Taxol. I started last Friday and I have had no side effects so far. In fact, in the interim stage while I was weaning off Femara, I became very tired, and the chemo steroids are giving me more energy than I've had in ages!
I was so naive at the outset of this- I did not realise that stage iv patients are not really given an end date for chemo, only a lot of talk about how well it is tolerated. That really shocked me.
Will just go back and have a look at this thread now.
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Southside, When I go for my treatment on Wed. mornings I always look forward to seeing the women who are on the same schedule that I am on as we yap and compare notes and have a nice visit while doing treatment. There are a group of us there who refer to ourselves as Lifers. There was a new woman who asked me How long are you going to be doing your treatment? and this other gal piped in and said Oh, she's a lifer like me. When you stop and think about the term, I sure would rather be a lifer than thinking of myself as dying.
Thank you for the compliment, Hattie.
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Hi everyone - I'm a newbie posting from New Zealand. Just finished my 4th chemo - FEC/taxol when I was first diagnosed in 2006, xeloda in 2010, and weekly vinorelbine three weeks ago. I like the term 'lifer', it is so true. Just got my scan results today and onc has said vinorelbine only zapped some of the liver cells, unfortunately there are some left. So I'm on a treatment holiday for about 2 months, before I start weekly taxol. I'm pleased to have a bit of a break before I start again. Xeloda finished pretty disasterously for me in 2010 with an enlarged heart - ended up having a pericardal effusion with fluid of the lungs. But vinorelbine has been great with very few side effects and has improved my lung capacity. It is great posting on such an active web site. We have Sweet Louise in New Zealand, but with such a small population not many ladies post their news, good and bad. So thank you for sharing all your experiences, it really helps.
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Hey everyone,
Just to throw in my technique in constipation management. The days following Chemo I will do a daily coffee enema. It helps me feel soooo much better and helps to remove the dying cells from my body quickly. You will be amazed try it!
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Hey folks - I could use some experienced advice re: mouth sores. I am currently taking Xeloda (14 days on, 7 days off) in combination with Tykerb. Have only gone thru one cycle so far. I've had really good luck with the side effects 'till now, maybe because I started treating for them before I started the meds - a bit of GI stuff, a bit of indigestion, a tiny bit of hand/foot stuff, a rash - but completely managable. Have been swishing mouth with baking soda and water rinse 4 times a day since before starting meds and wasn't having too much trouble, but the sores are sneaking up on me now. Anything I can do to help beat them back? Is it likely that they will calm down during my "off" week? Thanks everyone - so glad that you are out there. SUE
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Dear Sueopp---
Magic mouthwash numbs mouthsores. It is a combination of lidocaine. maalox, and "Q-dry". Ask doc for prescription. It seems to tide me over but its not a cure. They say avoid spicy aciditic foods. Duh!
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Sueopp-
I second the magic mouthwash. It helps a lot. I also was a big fan of smoothies from Panera during that time as my mouth sores spread into the throat. Good Luck!
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Hello Ladies,
It's been awhile since I post message here, been pretty busy with my 11 months old baby, and planning her first bday next month :-)....
I had my chemo cocktail # 2 this morning (FEC)......chemo has a weird effect on me.....specially the first week....i feel good and I feel like more normal while on CHEMO.....couldn't feel any pain.
I have good news and bad news to share......well for me it's not so bad....I take it more of a challenge...and I know will get through this...
Yesterday went to see my Oncologist, and said that looks like first round of chemo works.... 3 masses (tumor) in my liver almost gone..(YEHEY)...(left and right liver has 2.5cm of tumor)....liver enzymes went to normal level. I am doing the HAPPY DANCE now.....hehehehe.....
Bad news is tumor in my bones...I just had my first bone scan 2 weeks ago.....Deng!!! Bone scan results lights like a Christmas tree...(lol)..it's in my spine, left shoulder, both hips, and skull....I hope these are all gone by the time I am done with chemo no. 3...(will repeat bone scan after chemo no. 3)....I can't wait till I am done with my first 3 rounds of FEC....I am feeling this is going to work...and keeping the positive attitude.....
Hugsss...
Jen
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Wow! What a great post! Your positive attitude and willingness to take up the challenge gives me (and us) hope and some real joy. Congrats to you, now go ahead and beat those bone mets into nothing! SUE
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Hi my name is Lindy, i am 29. I was first diagnosed with stage 2B breast cancer 5 years ago. I underent the normal chemo treatment, bilateral mastectomies, implants, radiation and finally felt that part of my life was over. I scanned every 6 months and always clean scans. My last was Oct 2008. I started anaesthesia school and got pregnant with my third, first since breast cancer. I was considered Cured. Then 7 months into my pregnancy I discovered a rather large lump on my chest that continued to grow. I was certain it was cancer but kept quite to all because my sons health was all that mattered. I delivered a healthy baby boy jan 6, 2011. Week later had ct scan that showed mets to my lungs, chest wall, 3rd rib and lots of lymph nodes. Iv had every test known to man and everything else is well. I did 6 doses of abraxain and gemzar with zometa. had another set of scans and it shrunk 40%. so i have continued to sta on this regamind while Im trying to get approved for mass dose chemo with stem cell transplant. I know this research is unclear but some women did get cureed just the not majority. But lets face it a 1% cure rate is worth trying for. If i dont do this I will be on chemo forever because I am tripple negative. I have looked at all of the research and lets face it it sucks for us stage 4 woman, but I refuse to die. I am going to somehow find the cure. But its hard. Its hard to deal with the emotions of all this. I have a 7, 5, and 4 month old. they are my life and deserve a mother. Im not scared to die I am scared for them, I dont want this for them. I was just wanting to know what others are on, what their response has been. Also how to deal with the though I may die soon. I am completley healthy looking and feeling besides the chemo. I also was five years out and it came back, so fair.
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It does suck to be Stage lV, but it is not an automatic death sentence. I have been doing this since 1998 and when I started with this onco he told me, we needed to treat it as a chronic illness and that is what we have been doing. For me the A1's were very tolerable and they worked, put me in remission for many years....then it was on to chemo and I have done many of those, some easy, some rough. The one I was just on failed and I have not only an increase in size in my liver mets, I have new ones. Plus the MRI of my head showed a solitary sclerotic metastases in my skull....something my onco is not too concerned with since he says I have had bone mets for years and they are now stable, but the fact is to my knowledge, it was not there before. So on May 4, I am going to be starting on Halvalen in hopes we will get those liver mets under control again and I am to keep getting the Xgeva monthly. One thing for sure, this time I am not going to wear a wig....it's going to be scarves and bandannas.
Don't even think about dying Lindy....you have to watch those kids grow up
They were right in telling you Magic Mouthwash....I work in a dental office and that is what they prescribe.
Sweetangel, Great news about your liver....the way I look at it bone mets are not good, but you can live with them until they find something to get them under control....the liver, now that is a different story or so my onco tells me....says this is serious and we have to really go after it. As if I didn't already realize that!
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I am starting a trail that I found through clinicaltrails.gov. It's the vaccine with low dose taxotere. I am very postive about it in that, less side effects and longer life. The trail I am in helps with expenses of hotels and transportation.
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Is your trial in Baltimore?. JustJudy is in one there. I would not be elegible for that since I have new mets and am not stable, but I am hoping the Halaven works for me.
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I am sitting here in the Chemo chair. Friday's are always
depressing. Meeting with my oncologist who tells me
that my prgnosis is poor. How I miss the Fridays's or any day
when I felt light. Now when ever I am with my husband or childernK
I just cry. It is such a bummer to spend what time I have left
with them crying. My doctor to me to take an antidepressant.
So last week I finally decided to start taking effexor. I have found if
I am active I can keep my mind off dying. The days I am sick
it is hard to pretend/forget. This Easter weekend should be of comfort
as I remember the mercy and grace I have been given.
I know many many others have suffered
so much more. I need to find a way to turn off my
mind and feel the blessing of the moment.
You all know how hard this is to do.
I pray for all of us, for our spouses, for our children, our families and our
dear friends. That we would show each other the love, grace
and mercy that we so badly need. God let us take our eyes off
our ownselves and look to you!0 -
Oh Waves, I am sorry you are having such a rough time of it What chemo are you getting? I myself did not like effexor, but if it makes you feel better, by all means stay on it. Do you have things to keep you busy....or are you too wiped out by chemo to do much? If you are not totally wiped out, try to stay busy and do things to keep your mind off cancer, things you enjoy.
My liver mets have grown in size and I have new ones and my onco says it is serious and we need to get more aggressive, but never does he tell me the prognosis is poor....I don't believe they should sugarcoat things, but at the same time they should not take away our hope. My onco always says he does not have a crystal ball. We are all different, respond differently and sure the docs know more than we do , but they are not always right. My onco is now telling me he does not think I will be able to carry on and work the way I have been once I start Halaven, but I plan on proving him wrong. They dont know everything. Do you like and trust this onco? Maybe you need one with a bit more optimistic outlook. Try to have a Happy Easter .
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Marybe,
Thank you for your response. I do trust my oncologist. He is accomplished and compassionate. That is what make it even harder when I see him. Since November I have been taking Abrxene and avastin. I have been looking into a procedure which puts radioactive pellets into the liver so have only had abrxene for the past month. I do not believe in sugar coating either and I am sure doctors are searching for better treatments for us. My doctor always comes back to "Has this been shown to extend life?". I am in such a corner that I am willing to go experimental routes. What do I really have to lose? I do have times of enjoyment. But boy do I get down. Is Halaven suppose to be harsh? Blessed Easter to you. ((((hugs))))
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Waves, I think it was only approved in Nov of last year and from what I have read on the thread about Halaven here on BCO, it really is not all that harsh. But it is different for everyone. Maybe my onco was just trying to prepare me for the worst when he said he did not think I would be able to carry on my routine as I have been. The abraxane, avastin for me was the hardest chemo I have done so far....I had every side effect listed and more....my nails are still not quite back to normal and I quit taking the abraxane at the end of July 2009. However, it did work.....shrunk the tumors in my liver, kept the bone mets stable and took my tumor markers down. Is the abraxane working for you. I know that there are many chemos out there. I investigated RFA as well as chemo embolization for my liver, but since I had mets in so many places they decided it would not really benefit me. Have you checked into either of these? AmyJo spoke of the procedure you are talking about I believe...said they are doing it at Duke. As long as they keep coming up with new treatments there is always hope that one day they will find a cure. I will keep you in my prayers.
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I am getting the Neulasta shot today and recall seeing that some people took Claritin AD for a few days before and after to reduce the pain associated with the Neulasta. Any feedback -- Has anyone taken the Claritin and did it help?
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I honestly do not even know if I want to do this chemo....each day I am feeling better now that I have not been getting any chemo....got my Xgeva shot last week, but it's been three weeks since chemo now. I am sleeping just fine, am going to the bathroom every morning after I have my cup of coffee just as I used to, and amazinging enough my chronic back pain is gone. So I am asking myself do I want to feel like crap because I am doing a chemo that my onco isn't even sure is going to work for me.....he's confident, but he's been confident before. And I was not even worried about the neulasta shot until some of you started talking about it.....but you know some women complained about faslodex shots being painful and those did not bother me and I also never had any problems with the zometa so maybe I just am lucky when it come to SEs, but I still am having a lot of doubts about starting a new chemo. I know it would be insane not to do some form of treatment, but I have to admit I am really enjoying my time off.
How are you doing Waves? And how are you Jen, and Suop and everyone else doing? Are you doing that trial Ma111?
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Marybe,
It is in Bethesda under the National Institute of Health. I have new mets and that's what makes me eligible. It's low dose Taxotere and 50% get vaccine. If I progress, than I get put on the vaccine only.
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