Chemotherapy for Stage IV
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Some people start losing their hair around day 10 or 14.
I am going to be getting Avastin/Taxol -- I had a horrible experience at my 1st chemo when the billing/insurance person came in and told me that my insurance company (Anthem) had disapproved my Avastin.
My onc had set me to get Gemzar/Navalbine/Avastin every two weeks for 12 weeks for this chemo. The insurance company approved the Gemzar/Navalbine but disallowed the Avastin.
They tried to appeal and went to the wall for me! But Anthem would not budge. The only way they would approve Avastin would be as an Avastin/Taxol combo.
So. . . my onc punted. He gave me the Gemzar/Navelbine yesterday. And rescheduled all my next treatments to give me taxol next week, Gemzar/Avastin/Taxol the following week, Taxol the next week, then Gemzar/Navelbine/Avastin after that like he intended!
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Exscrillbe,
Sorry about your insurance snafu. I've had a couple of those myself, like when at my initial diagnosis my insurance wouldn't pay for Neulasta and I had 12-13 UTIs and as many prescriptions and needed catscan because my bladder cells were looking pre-cancerous.
I know that for some reason the oncs really believe in Avastin, but it seems to add an advantage in the 23-27% so I am not sure how crucial it is and the SEs are the worst of all. But maybe you 'll get yours anyway. I feel like total crap today and I think its mostly the Avastin and I'm not sure how much I really like the crap.
I think your Gemzar Taxol Avastin is going to work like magic, I hope mine works that way. But if I have a lot more days like this I dunno...don't want to live to feel like sh*t. I keep telling myself it's temporary
L
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bo, it is temporary.
Well, I'll take the 23-27% considering my cancer, in less than a year, has flipped from ER+/PR+ to triple negative. Not sure what the odds on that are, but given it rules out a ton of additional drugs for me, I'll take every little percentage I can get!
Oh well. I hate that you are feeling like crap. Cyberhugs and lots of love to you.
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Hi all, haven't written much on this forum, but just wanted to pass this news on to you. Maybe this will give some of you hope. I was first diagnosed with breast cancer in 2006, i had spots on both breasts and some lymph nodes on right side. I went thru big red, and taxol then, and had quite a few radiation treatments. I went into remission for about 4 years and then i started having some fluid build up in abdoment this year. Found out that the breast cancer had spread to one of my ovaries. They went in and removed everything, (hysterectomy) looked everywhere, couldn't find anymore so they closed me up. I have done 4 treatments of taxotere and had a ct and pet scans done. I am now officially in remission again as it seems to be gone. Of course, never know how long it will last, but considering I was in stage 4, I will take what I can get. Doc told me I was a statistic as most people do not go into remission with stage 4 cancer. It is possible to beat it, at least for awhile, so please do not let cancer get u down and stay positive. I know that is easier said then done sometimes, but it is imperative that you don't let it get to you. Just make up your mind that you aren't ready to go anywhere and try to go on with life as best you can. I wish you all good things and also remember God is with you no matter what.
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Oh and my cancer started out as HER positive, but this last time was negative. I had elected, after the first time, NOT to do the tamoxifen as it caused me alot of pain and I couldn't work. I am now confident that I made the right decision at that time. Whatever they want to do, just remember that there are no cures for this, everything is done by what has been done in the past. It doesn't mean that it will work for you any better or worse. Decide for yourself, do research on the internet. My doctor is wonderful in that he suggests things to me, but doesn't get mad if I decide to go another route. And so far my decisions seemed to be working for me.
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I do think it is possible to be in remission when you are Stage lV....at least that is what they always called it when I would have my scans and there were no changes at all...it means everything is under control and stable .....at least I think that is what it means. I know some women on here have said they were NED who were Stage lV...that one I questioned and keep forgetting to ask my oncologist. It is amazing how much I still don't know about cancer, but I do know that it is something you can live with...isn't always easy, but it is doable. I have been Stage lV for over 12 years now and think I will shoot for at least 20....providing I can stand all the changes I am having with my body. Being 60 ain't all that pretty, but it beats the alternative.
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Crap's gone this AM..took a few doses of tylenol and ativan last night and washed all that evil toxicity out of my body and down the drain. Just feeling a little tired, and 5 lbs lighter!! Hope you are feeling well today too.
Cybernmf, congratulations on your long period of stability; that is unusual when a second area of cancer just can be surgically removed like that. Marybe, you continue to be an inspiration to all of us!
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Hi everyone
I firstly wanted to thank you all for the information and hope I get from your posts. I have been reading them over the last year and have not until now decided to post myself.
My mum was diagnosed with breast cancer in 97 but after surgery chemo and radiation she was given the all clear. The last year in Oct 09 she went to the doctors with and upset stomach and heartburn and they found the breast cancer was back (she is 56). It has spread to her stomach lining, bones and liver. She was very poorly at first, her stomach swelled up like a balloon and she looked terrible.
For the past year she has been on hormone treatment and was doing really well. The only real noticable thing was that her joints were very stiff. I got married in August and thankfully she was really well. Last month she went for her check up and they found taht the hormone treatment had failed. She had begun to get very short of breath. They found that she has a blood clot in a vein that leads from her bowel to her liver (has anyone lese got any experience with blood clots?). They put her on a blood thinner and started her on Taxol weekly - 3 on, one off. She was injecting the blood thinner in her tummy herself and then began to bleed heavily and bruise with no injury. back to the hospital where they stopped the blood thinner. We were devestated as the clot in her liver is making her feel so ill. She is so tired all she does is lay in bed or on the sofa. Her liver is swollen and very painful. Her urine is brown.
When we went again last week for her Taxol they said to start the blood thinner again but at a half dose which she has been doing. She has had 2 taxol and it is making her feel so terrible. Ive never seen my mum like this she is such a strong woman and always very active. She is so tired and has the most awful pain in her legs and feet. The breathlessness is the worse as she can't even get dressed without getting breathless - they say this is to do with the bllod clot? Her lungs were clear when they scanned her.
She went for her third Taxol today and has been told she can not have it - she will have to wait for 10 days. Does this happen a lot that bloods do not recover? I thought the wekly Taxol was not so bad? Do you think its also to do with her liver clot? If she has to keep having breaks will the chemo not work as well? She has sores and boils come up in her mouth they are so sore - has anyone else suffered with this? She is also having terrible trouble sleeping - not sure if it is stress or because she is so inactive during the day - any experience of this?
I like to offer my love to all of you. I hate to watch my mum go through this. i have suggested she comes on these boards herself however at the moment she does not seem interested in anything.
I hate to ask thedoctors too much in front of my mum as i feel she should ask only what she wants to know. This is hard though as i am the type of person that would prefer to know all details - i cope better with things that way so its been great to learn so much from you all.
Please contact me if you have similar experiences.
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Hi Marybe,
My onc has used the term remission with me and also has said that my PET/CT report says no evidence of active disease. So, maybe the terms can sometimes be used interchangeably? Not sure. I know that the cancer is still there even if it doesn't show on the PET. There just isn't enough to be detectable by PET. Does remission mean it's totally gone? Although my onc has used both terms when discussing my condition, he still indicates I'm not cured. My cancer is only being controlled at this point. In my mind "remission" sounds more positive than "NED". I have no idea why!! I've also read that most BC oncologists do not like to use the term "remission." Let us know what your onc has to say about all of this. The words we would all love to hear are "COMPLETELY CURED". Now, wouldn't that be great???
Love and hugs,
Lane
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I've had a bad lung infection most of September...lots of congestion, coughing. I went from running a couple miles, biking 12 miles several times a week, to not even being able to walk up a hill. I want to get some lung capacity back but if the Avastin is preventing the capillaries from growing I am wondering if I should be on it. I still cannot take a deep breath after finishing my zPac.0
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Hi Marybe,
I also am being told NED (from the last three sets of scans April, June, and September) by the docs at MD Anderson. I am definitely Stage IV, with spread to the vascular system. The last surgery did not show any clear margins on the specimens - fully infiltrated.
Completed the "red devil" set FEC, and started the Tykerb and Herceptin and made it to the April NED. I begged to stop the Tykerb (HATE the SE!); and they just looked at me like I had a third eye and stated, "why would you consider stopping something that is keeping you alive?".
So I guess we can be NED and be Stage IV. Still scared to death everyday, every ache, every pain - trying to deal with that.
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Hello, I'm new to this Board, but have read with interest many of the postings here. I am Stage IV, Grade 3 TNBC-er. Two weeks ago, I was given the NED news from my PET scan - Great news!
But with that news, I was told I'd be on chemo "forever", because of the stage and aggressive nature of the cancer, although I could take "chemo holidays" from time to time. (Currently I'm on Taxol & Avastin, every other week.)Is anyone else on this kind of "forever" treatment? How does it go? Are there more severe SEs as time goes by? I'm kinda flummoxed by this, and just wanted to better understand what this means to me. (BTW, I was told the news by the PA - I get to see the onc next Wednesday, which will be the first time I'm seeing him since scan results came in.)
Thanks for your feedback!
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I've heard of very low dose chemos --metronome?--that might work. Does the avastin really have to part of it? I think it's the worst part.
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I am thrilled for all of you who are NED and even though I have been doing this for a long time, I do not claim to know everything. One thing for sure MDA knows a lot more about this than I do. I think metronome was the oral combo I was getting cytoxin/methotrexate, but can't swear to that. Avastin could very well be a big part of your congestion Bopeep....when I was on it, I got really sick of people asking me, Do you have a cold?..I was always snuffing and snorting and sometimes coughing. There have been some tests that show chemo is just as effective without avastin....but I have found it depends on what YOUR onco thinks...
Sue, How is your mother doing? I had a PE, several clots in my legs and also a TIA so will always be on a blood thinner. I did the shots, lovenox and Arixtra I think....but now I just take warfarin which is generic coumadin. Once her clotting factor gets to what they call theraputic , they will most likely change her to an oral blood thinner. She gets this tested with a test called INR....can be done with just a fingerpick these days. Maybe they didn't do the taxol because her white count was low. Please let us know how she is doing.
TNBC, I know some SEs are cumulative...like neuropathy....but also some chemos seem to hit you hardest when you lst go on them....like make you sicker than a dog and soooo very tired, but they seem to be a little less rough each treatment. Finding premeds that work are the key to combating this. It all depends on the person and the chemo. And sadly, I think many treatments are forever.....with me, we just stick to one until it is proved it is not working or I decide I can't handle it.
I only see a PA tomorrow, but hopefully I will remember to ask her to clarify NED, Remission and Stable for me.....the old memory isn't what it used to be.
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Bo, I think you might mean Metronomic chemo. I googled it and "Cancer Treatment Centers Of America" has an information page about it online. They offer it there. The idea is to give treatments more often, but at a much lower dose.
Peggy
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I am on Velban, also called Vinblastine; it's supposed to be a more "gentle" chemo. I still have side effects to deal with from it, thinning hair, a flare up of my acid reflux, fatigue, and constipation, but it is not as hard on my blood counts as my CMF chemo was.
It's hard to find information on it though, I think because it's one of the older treatments not a lot of oncologist are using. Sure, I can Google and find all kinds of medical information, but what I can't find is any information from patients who have actually used it, and what it is like for them. I set up a Google Alert for it, but all I get mostly are sites where you can "buy it cheap"; not at all what I am interested in! I've posted on different support groups about it, and also on the MBC mailing lists, but so far, haven't found even one person that has been on this treatment. I really feel like an "odd duck" in this.
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Marybe,I haven't checked this thread for a while but I read your post and I think you are entirely right about the Avastin. I was miserable last week. Coughing my lungs out, no energy, no quality of life, I was actually thinking about hospice. I also had some pretty copious rectal bleeding toward the end of the week and that clinched it. My onc is very pro-avastin and ballyhooed any idea it was causing my lung problems but she doesn't think I should take it if I am having bleeding.I took my taxol yesterday and it was like nothing. I have no SEs at all. No tumor flares. My liver enzymes were way down from my first treatment (with Avastin) showing that the Taxol/Avastin treatment was effective. I am a little nervous about the lack of tumor flares and want to see how the numbers look next week before I give up on Avastin entirely.Bo0
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Bo, The onco I saw at MDAnderson told me it was approved for use with chemo for some reason even though there was NO actual proof that it enhanced the effects of chemo....I think that is what he said,although it seems strange to use enhance with chemo. He did not think it was necessary at all for success, in fact just as well may have said he thought it pretty useless, but my onco was very pro avastin and at one time I know just about every women in the treatment room was getting it.....now I think that has changed. All, I know is I hated it and was so glad to stop it and it took over 6 months for my sinuses to get back to normal.
The PA told me I am right, I will never be NED because I am Stage lV. She said even if the bone mets improve, they will always show up on scans and that is evidence so I can't be No Evidence Detected. I guess I should add my sternum is pretty well shot....no way could it even totally heal up and not show up on my scans. But she said some oncos may use the term NED if things are stable or improving and no progression is noted. I would just be thrilled to get back into remission some day.
I am really beat and have to go to bed....fly to MO early tomorrow morning with my father. I for sure will be wearing my trusty sleeve.
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Hi TNBC-er -- It's great news that you are NED!!!!! Let's hope you stay NED for a very long time.
I'm on the chemo forever program. Even though I'm ER and Her2 positive, the hormonal and Her2 treatments didn't work for me. Soooooo, I keep on a chemo until I can't stand it, get too toxic, or it stops working.
Taxol and Avastin are tough chemos but they're good. I had good results with Taxol but the aches were terrible!! Since long term chemo can wreak havoc on one's liver and other body parts, oncs tend to use the harshest chemos first and then often move into gentler ones. It won't always be bad. And then, once you're NED for a while you can look forward to a chemo break.
Good luck!
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Hi Lane, Thanks for your good wishes. No reason that you should not also be fortunate on hormonal treatment. I was on Femara for 4 years, then Faslodex injections, then Aromasin and there are others. Even if they beconme ineffective there are oral chemos and sometimes one can go back on hormonal with good results.
Greta
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I just finished 3 - 8 week (weekly) chemo treatments of Abraxane (weekly), Avastin (every other week) and Zometa. Had partial masectomy in March, only 1 node positive but PET showed it had spread to liver and a spot on spine. PET after 1st 8 weeks treatment showed great results , much less in liver and nothing showing in spine. had CAT scan after 2nd series, showed reduction too. Now just got results from recent PET following 3rd series of chemo and results not as good. Looks like cancer coming back in liver though isn't near as bad as it was on first PET scan. Dr says this shows it is getting resistant to previous chemo and is going to put me on Cytoxan and Taxofere which I will get in combo 3 weeks apart ( twice) and then he will scan again to see results. Anyone had this before and can give comments or advice?
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Thanks for the feedback, Konakat and all. (Been a bit hectic at tehoffice, so wasn't able to check in for a while.)
Saw the oncologist last week, and he confirmed that I will be on the Taxo/Avastin every other week regimen until the end of the year. (Apparently 6 months of Taxol is thelongest time recommended before SEs become too severe.) At that time, he will do a scan to see if anything has changed, and then decide on the next regimen for the new year.
When I got the NED news, I thought that would be the end of it, except for regular check ups. So it was a surprise (and I'm still trying to process it), that I will be on some form and frequency of chemo from now on. Wasn't prepared for that.... but if that's the only way to go, then so be it.
Thanks again, all.
Take Care.
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I would like to know the answer to that question alos. i have heard that cancer feeds off of sugar. Imagine if the solution was that easy...just no sugar in our diet??
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Monday I start chemo Abraxane/Avastin, plus Zometa for bones (once a week for three weeks, one week off). I have a slam-dunk recurrence 2 yrs out with mets to bones, liver, and lung. Lovely stuff.
I didn't change anything the first time around, kept eating the crap, working the stressful job......you get the pic. I have been doing considerable research about diet over the past few months.........anti-cancer diet. Completely cut sugar out of diet, no processed foods, no dairy, no meat.....lotsa whole grains, veggies, and fruits.....oh, and enough Green Tea to drown a person. Several herbs are highly recommended (rosemary and thyme to name a few)......and the spice turmeric that is in curry has major cancer fighting powers. Garlic, garlic, and some more garlic. I've just added some fish to diet, after hard core vegan for a month.
It's not easy, especially a sweet freak like me (I went into a trance the other night watching Top Chef Just Desserts), but I am determined to really do all I can do in addition to the traditional treatments. Even though I can't get my onc. to acknowledge the power of diet (which really pisses me off).........I honestly think they are discouraged from encouraging any course other than DRUGS. I guess it is up to us to do the research and make sure all the bases are covered.
Enough, about my food arsenal. I will check in with SE's, already prepared to do the pre-hair loss buzz..........
Take care ladies, and keep fighting the good fight......
Shan
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All I can tell you is that Abraxane/Avastin with the mothly zometa worked for me.....but after 22 straight weeks of it I quit. Was this a good choice?, I will never know. However, it DID WORK. I think if I had started in on something else rather than going back to trying hormonal drugs which at one time also worked, we may have been able to keep things where they were when I stopped the abraxane....think my tumor markers were all the way down to 39 then and also the tumors in my liver had shrunk a lot. Then things went the other direction and I am now doing navelbine weekly and zometa (but only every other month now ) The navelbine is keeping the bone mets the same, but we need to find something else to do with my liver and are going to discuss this at my appt on Wed. I think it is different for each one of us....what works for one, doesn't always work for another, but at this Stage of the game (no pun meant there) all we can do is try what is available and pray that this is the one. I think about all of you and keep you in my prayers. Just keep in mind we are people, not stats or numbers, and there is always hope regardless of what doctors or books may say....getting info on these boards and being my own advocate have kept me going. Oh re food.....I have been eating more healthy than I ever have in my life for the past 9 months....started WW when I went on the Megace since it increases the appetite and is used to help people gain weight.....I was on vacation last week and ate things I had not have forever, like grilled cheese, mac and cheese, fries, icecream with chocolate syrup, creme brulee' and coconut cream pie.....sort of like the ultimate pigout....It was wonderful. Now I am back on the wagon with food, but I think it is good to satisfy our cravings every once in awhile.
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Well, one treatment down..............so far so good, no SE's just slep 14 hours (my mom took care of the babe, bless her)! Had Abraxane and Zometa, no Avastin yet. Have to have port put in Mon (had it removed after first round, implants had shifted it considerably and very uncomfortable). I won't be able to get the Avastin for a couple of weeks after placement as it can negatively impact healing healing.
Still kicking.........did the punk do for fun, till it falls out. Thinking about doing some fuschia tips just for good measure! My little boy woke up the next morning and said........"Oh, mama," quiet mournfully. Bless his heart, he's adjusting, I told him I would be bald soon, he just keeps kissing my head. The love of my life, that one! Keeps me fighting.
Hope everyone else is holding up well, with little to no SE's. I have read the Avastin can be a bit rough, but as long as it does it's job, I can deal with it!
Hugs and kisses!
Shan
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Shan, You can do it....I have faith in you....and as I said it did work for me, but I was a woosie and quit after 22....however it really went after those tumors and that is what you need. Have they given you a time frame on treatments? Sounds like you have a wonderful reason to live....how old is he? The avastin will be every other time once you get back on it.....runny nose, being stopped up, possible nosebleeds....at least that was the extent of the SEs for that one for me. People thought I had allergies.
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Marybe..........you are no woosie, it takes strength to last through any of this...........22 treatments is a lot. I'm sure with time the toll on your body can get a bit much!
My sweetie is 2 1/2, talking a mile a minute, and makes me feel like a new woman just looking at him. He's always giving me kisses and hugs, it's wonderful!
They haven't given me any time frame, I guess they will wait and see what kind of results they see. I am prepared for the long haul. I've got to be around to chase the girls off!
I actually had to take a quick run to my dr. Thank goodness she comes to a local clinic a couple of days a week (bout ten min away). I was turning bright red and my mom sorta freaked and called them. They wanted to see me, just as a precaution. My onc. said just take Benedryl and call and if I had any changes. They are a very caring bunch, that makes you feel better. The nurse who gave me my chemo yesterday came out to the waiting room to make sure I was okay.
Just a mild reaction, I just look very, very embarrassed! Ha! Goes great with my newly platinum mohawk!
Take care and my thoughts and prayers are with all of you!
Shan
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I'm new to this site and I just want to post my story for anyone to read. I'll get to the discussion of "remission" later. I was diagnosed with BC (1.5cm against my chest wall) in Oct 2007. After the diagnosis a double breast MRI located a second tumor (<1cm) in my right breast under the nipple. After consulting with an oncologist and several surgeons, I decided to go with a mastectomy and reconstruction of my right breast with an implant. The day before my surgery in December 2007, my oncologist called me with the shocking news that the PET scan I had days earlier revealed 5 large tumors in my liver. I went ahead with the mastectomy and tissue expander for a future implant. The liver was biopsied by my surgeon during the mastectomy surgery. After the mastectomy, I learned that 6 of 20 lymph nodes were involved, but the axilla nodes were clear (none of which really matters since the cancer was already in my liver.) From January to the end of May 2008, I had 8 rounds of Abraxane chemo with a shot of Neulasta the day after. I also had my tissue expander filled on the day of the 3 week chemo schedule since my plastic surgeon and oncologist were in the same medical building. In June of 2008 I started taking 2.5mgs of Femara daily. Since I was premenopausal prior to chemo, I also received monthly shots of Zoladex to keep me in menopause. In July 2008 and October 2008 I had 2 surgeries to reconstruct my right breast and reduce my left breast (which by the way is still larger than my right breast silicon implant). In September 2008, PET and bone scans showed significant reductions in the size and SUVs of the liver mets, but I had many new bone mets in the L vertabra, pelvis and ribs. I started Zometa infusions every 4 weeks. In March 2009 I had my ovaries removed (bilateral oopherectomy) because I was tired of the monthly Zoladex shots. I continue to have PET scans every March and September with an abdominal CT scan every June and December. The March 2010 pet scan and the June 2010 abdominal CT scan indicate that all the liver tumors have disappeared. My oncologist now says I am in "limited remission". I asked him what this means and he said that he hesitates to call it "full remission" as an MBC patient is rarely cured. I told him he could call it what he wants, but I told everyone I am in remission! I plan on continuing with the Femara and the Zometa regimen for the next 3 years since it, combined with the previous Abraxane chemo, seems to be working for me. </p>
Hugs and Prayers to everyone on this site.
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Shan, I was actually allergic to Avastin and got a red rash when I lst had it....my neck felt itchy and I asked one of the nurses if my neck looked any different and said it itched and she said just a min and went and got another nurse and the next thing I knew they stopped my IV and went off and came back and said I had hives and my onco said I had to get benedryl or we couldn't continue the treatment. I begged for something else since I had to go to work from there and they gave me a steroid I think instead....from then on I always got a premed before the avastin because I was allergic to it. Benedryl knocks me out.
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