Chemotherapy for Stage IV
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Some of you wonder why some places use PET scans and others don't. The NCI does not recommend PET scan in their protocals. But PET scans are very effective tools. They show how active a tumor is. Tumors that have a score above 8 are active the range I believe in 1 to 20. ASo you could have a large tumor that is not active or a small tumor that is more active and yes, more lethal. It is essential for stage 4 women to get PET scans and have tumor markers done, because we need to conserve our chemotherapy options. I went to an MD at fist that did neither but did CT scan every 3 months. This was at City of Hope were they did not use them , and in my opinion is dated. Most hospital contract a service that parks their Pet Scan outside in a trailer.
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Hi,
4/10 finished AC+T chemo. Lung nodules found (PET&CT) only a couple weeks later as well as lumps in recon breast -- both need biopsy, to take place in the next weeks.
Regarding the lungs my onc said that if it were mets my treatment would be no different than what I'm already doing, which is ovarian ablation & Arimidex (can't do Tamoxifen) -- she said no chemo.
Is she saying no chemo because I just did it and (if mets) it clearly didn't work? Are there any other chemo drugs to do in addition to hormone treatments for lung mets?
Thank you, and blessings to all...
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kayleigh3843
I think she meant no more ACT. I've already been on AC, Taxol/Herceptin, Taxotere/Carboplatin. I'm on abraxane/avastin for liver and lung mets, but my dr hasn't said anything about a biopsy or PET scan. Thanks.And God Bless us all.
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Dear Maybe -
Thank you for your detailed discussion of your condition. I can relate and I was most interested in your side effects from Abraxane and Avastin. I was first diagnosed with BC in July 1995 -- I was 51 years old. I had a mastectomy and 4 rounds of Adriamycin/Cytoxan. I was cancer free for 13 years until August 2008, when I had a recurrence. The cancer had metastasized to my bones - ribs and spine. I had radiation to zap out the tumors in my vertebrae and one in my rib. After radiation, which took 15 days, my Oncologist put me on Faslodex and Zometa --which was working very well-- 6 months into treatment my PET Scan revealed all was resolved -- no cancer. Now, two years on Faslodex and Zometa, my last PET Scan on August 5, revealed cancer cells in my spine, hip, and ribs. My Oncologist wants to put me on Abraxane and Avastin and keep me on the Zometa to get me back into remission. I'm very concerned about that regimen -- I'm now 66 years old, I shrunk 3 1/2 inches-- I went from 5'4" to 5' because when the tumor in my vertebrae was zapped it compressed my vertebrae and I only weigh 113 pounds. I'm no longer the healthy, physically robust woman I was in 1995. And after reading what you went through on that regimen, I'm having serious concerns. The side effects from the treatment really scare me because, basically, I'm not sure my body could handle it.
Has anyone else experienced side effects with Abraxane and Avasin?
Good health to everyone!!!
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Thanks august012001...
I'm pretty sure she really meant no chemo -- like I can't take Avastin because I have genetic mutations that make me more susceptable to blood clotting...am HER2- so Herceptin won't do me any good...and not sure about Carboplatin. When I did AC&T a few months ago my "T" was Taxotere, not Taxol, just a personal choice. Either way, since they are both in the taxane family and these nodules potentially grew while I was on that regimen I'm thinking they wouldn't give me any more....unless that's the only way you can take Carboplatin and that's still an option? Not sure.
She said that the treatment for me if I do have lung mets is exactly what I'm already doing, ovarian ablation & Arimidex. It makes me feel so helpless.
My lung biopsy is finally scheduled, Aug 31.
Thanks again for answering me
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Ann, Don't make a decision based on my SEs....I just seemed to get them all on that particular combo and the onco at MDA said I exhibited extreme toxicity to it.....I had an allergic reaction (hives) to avastin the lst time I got it so they would give me steroids and something else in the premeds to prevent that. The SEs didn't get really bad until about treatment 13....I think with all chemo the SEs are cumulative. Yet, there are others who tolerate it quite well. There is an older lady and by older I mean maybe 75 and she did not lose her hair and did not get the funky nails or anything like I did....about her only SE is fatique. I do not know what her dosage is, but I do know she isn't getting it every week like I did. There is a abraxane/avastin thread on these boards and I know not everyone had the SEs I did....maybe some of them, but not all of them...and my eye specialist tellls me the problem I have with the eyelashes growing in the wrong direction are not something he has seen with chemo before. August who posted right before you is doing this combo so can share her experiences with it with you. The abraxane did shrink my tumors so it worked, but I just didn't feel I could handle any more. I did 22. Now I am doing navelbine and it was working or seemed to be.....took my tumor markers down, but this last time they had gone up 198 points. So far they have not ordered new scans for me and those are what will tell the true story. All I know is I am feeling good . I have sort of come to the conclusion that unless I have SEs from chemo, it isn't working for me. We just have to weigh the pros and cons. One thing I was told by the onco at MDAnderson and have since read is that they have Not proved chemo to be more affective with avastin which is why they prescribe it.
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Anne-M
I'm on Abraxane every week and avastin every other week and I have found this to be the easiest chemo combo of all. I started with Taxotere/Carboplatin/Herceptin. In the beginning of the second infusion, the taxotere caused me to have a severe allergic reaction and I refused to take it again.What I didn't know then was that my liver had 18 tumors on it! And they were HER-PR-ER- and the Herceptin was making it worse. I stopped chemo, had surgery, then went on adriamycin/cytoxan with bad SE. 4 treatments then onto taxol/herceptin. again the tumors started growing. Stopped that and after reading one of Marybe's posts', I told my doctor about avastin/abraxane. He thought it was a good idea (glad he thought of it) and I've been on it every week since July 12. I felt immediate relief in the beginning. Dr. says my liver is not as enlarged, but I don't know yet if it's working on my lung mets. SE for me are sleepiness, draining of my sinuses which means alot of nose blowing, and my hair is growing back. So I'm happy with this combo. Hope it's working.Good Luck to you.
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Oh August, I am so happy it is working for you....as I said it did for me, but for me it is very important to be able to work and at the end there, right before I said Enough, I was having a tough time working. The neuropathy was not only in my feet, but starting in my hands and because of my fingernails I had to have the dental assistants do simple little things for me like take the foil covering off of the prophy paste and put the disposable tips in and take them out of the air water syringe. Thank God, I could still grasp and use the instruments and I kept my gloves on at all times so patients would not know what was going on with my nails. My tumor markers were down to 37 after treatment #22, the lowest they had been for a long time and the tumor in my liver shrunk over 1 cm. They are not seeing evidence in my lungs now so it took care of that also. It's like I said what is tolerable for one, may not be for another and they is why we have to keep trying new treatments when we are on one that doesn't work or has SEs that we can't handle. I am sure the sinus and nose blowing if from the Avastin....I also got nose bleeds with it. Again, I am thrilled the combo is working for you. As I said it is working well with minimal SEs for that older woman I mentioned ( whenever I use this term, Mrs.Robinson comes to mind) and she has been on it for over 2 years. I will be checking in here periodically to let you all know what is going on with my navelbine.
In your original diagnosis it says ER,PR+ and Her2+....but you said in your liver the tumors were negative......can this change?
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Marybe,
Thanks for writing. It did change from positive to negative in my liver. I didn't know that could happen. My new dr uses tumor markers so i'll see how they are next week. Take care.
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I was diagnosed before menopause, in May of 2003, I was stage II then.
In Feb of 2004, I my doctor put me on Lupron injections, which put me into menopause, so I was in a drug induced menopause when my cancer returned as stage IV early in 2007.
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Femara or Xeloda? My onc is having me decide! Frustrating. My breast cancer in the bones is showing negative for estrogen, but onc says it still could be positive (initial inflammatory BC +estrogen). So I'm starting Xeloda tomorrow. I had eight years of remission. Doc only mentioned stem cell transplant past Xeloda. It is very interesting to hear about all these different treatments!
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how long have you stayed on chemo until you've gotten a "vacation"? what were the reasonings and how long? i have been on chemo since March of this year - Xeloda and now Abraxane. Just curious on othes experiences. Thanks!
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I've been on CMF chemo since April; I just found out today that my oncologist wants me to take a 2 month "holiday"; he just wants to give my body a chance to rest, and he says it's hard on the bone marrow too. He alway wants to do another bone scan; depending on those results, I may not have to do any more chemo, or I might have to do a different kind of chemo. I am having the bone scan done on Thursday.
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Marybe,
May I ask how long you were on hormonals before they quit working? I was diagnosed in 2/97, then had 12 years before metastasis in 2/09. Have been on Femara and Zometa since then, and am currently NED. Guess I'm waiting for the "ball to drop." I have my 6-mo. scan in 2 weeks.
Thanks,
Lane
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LWD, Sorry, I have not been on here to answer your post before now....I did hormonals from 98 til 2008 Started with tamoxifen,then arimidex briefly, aromasin and faslodex. We trying aromasin again this past year since the onco at MDAnderson thought it might work again, but alas I am afraid it's on chemo from here on . They were able to treat me with hormonal drugs since I did not have them as preventative.
My cell search came back zeor so I am staying on Navelbine until I have scans in the fall and then if it shows things are progressing we will probably try something else or maybe add something.
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Hi Marybe,
Thanks for your response. Well, the hormonals worked a long time for you, sounds like. I was never on Tamoxifen, only lumpectomy and rads in '97, because it was so tiny. Ha, ha. But it had escaped somehow anyway! Then mets to sternum and lung pleura after 12 years. Just hoping to predict how long the hormonals will last for me (as if that's possible). But, you know how we get thinking about it. Trying to plan the rest of my life (as if THAT'S possible)! Trying to learn to take one day at a time. But, really, I'm enjoying these days when I feel pretty darned good! All my best to you,
Lane
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Hi, Ann- M,
Those recurrences after so many years are hard to take, aren't they? Mine was after 12 years. Mine was so teensy they predicted about a 2% chance it would ever come back. I am grateful, though, that I had those 12 extra years, and that I've seen my kids grow up. There are so many that are much younger than we are, with little kids. I hope with all my heart there will be more help for the younger generations. Having been on hormonals only so far, I am very nervous thinking of possible chemo in the future. Not sure at this point whether I'll go that route or just let nature take its course. But guess we never know until we get there. I'm 60 and have had a wonderful life. I would like to see my kids settle down and would like to be a grandma, but maybe it's not to be. I have my 6-mo. PET scan on Sept. 7. We'll see how that goes.
Wishing the best to you.
Lane
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Lane, My mets were to sternum and lung like yours and also my liver. So I have been Stage lV for over 12 years now and there is no reason to think that you still won't live to see grandchildren. I am 60 also and am sure we both still have a lot of living to do in spite of breast cancer. The good thing about hormonal treatments is that there are a lot of them. Good luck on your PET scan.
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Marybe,
I just read through this whole thread and I was really interested in your experiences with Navelbine as I am looking at starting on Navelbine. Did I understand your posting right, that your CTC test was zero and that is why you are staying on Navelbine? My current oncologist doesn't believe in the CTC test but my doctor at MD Anderson had a lot of faith in it and would change treatment based on it.
I am also interested in your treatment regime which is once a week for two weeks and then two weeks off, is that right? My oncologist mentioned every 3 weeks but I think a smaller dose for two weeks in a row would be better in my case because my cancer has been relatively slow growing. Do you happen to know how much you receive every week?
I have this unusual type of cancer that was dxd triple negative but has been in my bone only for 3.5 years. I went to MD Anderson for 3 years and they tried me on anti-hormonals after 2.5 years because they said my cancer "didn't act like" triple negative, but Arimidex didn't work for me so my only options are chemo. The cancer has been relatively slow growing but has been progressing quicker this last year. I don't know if this is typical. It is a scary thought that over time the chemo stops working at all.
You can see in my signature that I have had FEC, Taxol, Xeloda, Abraxane, and Arimadex. I don't remember how many rounds of Abraxane I had, it was around 5 months, but I also quit that because the side effects were so bad. Most recently I have been on Xeloda for the 2nd time and my kidneys were in extreme pain and I started throwing up the Xeloda and tumor markers were also going up so it seemed that Xeloda was done for me too.
Your postings are giving me some hope for Navelbine.
Terry
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Marybe,
You are my hope and my inspiration....to steal someone else's words! What a trooper for so many years!
Lane
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Hi ladies, I'm pretty new to this entire website and am brand new to this forum but I was hoping I could ask one question. My dear step-mother of twenty years was diagnosed with breast cancer three weeks ago, told she had to have a double mastecomy, went to the Twin Cities for a second opinion last week and was told she had to immediately start chemo because it looked like the cancer had spread. Her initial tumor is 3.7 cm, she's hormone-sensitive, MO, N1, and T4 because the cancer has spread to her chest wall. Her brain MRI this week showed no cancer, which was good news, but either her PET or CAT scan showed possible cancer spots on her spine and in her liver. So, as of yesterday, she is officially Stage IV. As you can imagine, it's been some very rough weeks, especially when the doctors were discussing next steps IF she survived her first four months of chemo. She started chemo (AC&T) on Monday, with an immunity booster so that she can have chemo every two weeks. The one bright spot in all of this is that she's handled this first week of chemo very well - she's slept a lot but hasn't had a lot of pain or loss of appetite. Anyway, she and my dad aren't the best at asking a lot of questions (I've told her she should join this group) and I have one big question right now - will they do another PET or CAT scan at some point during this chemo regimen to see if it's having any effect on the tumors? Or will we have to wait until after the full 16 weeks to see what's happening?
Thanks in advance for any answers - and thanks to all of you for sharing your struggles. Your bravery and compassion in the face of such adversity is just incredible.
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Hi, I was dx with stage iv breast cancer with liver mets oes + her 2 + in dec 2005. I had 6 AC and 4 taxatre with herceptin, I have been on herceptin and femera since 2006. The liver tumors shrunk and have been controlled since then. The liver tumors began to shrink as soon as herceptin was started I will stay on herceptin indefinately. I was 42 when dx with an 8 year old daughter, onc gave me 5 years so reading these boards has given me Hope for a long life.
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Thanks, Marybe for giving us so much inspiration and hope. Whatever you post, I mention to my onc.
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Well, I won't be getting that "chemo holiday" after all. Bone scan showed the areas in my hips and spine are stable or unchanged, but I have new spots on the ribs, which may or may not be mets, I have to have another bone scan in 2 months.
So, he wants to keep going with the CMF, so I start that again next Tuesday, after Labor Day. I was scheduled to get my Zometa today, but he said I can wait and do that next week. I have had a busy week so far, and with a dentist appointment Thursday, and meeting a friend on Friday to go to a used book sale and a city wide yard sale, I am glad to not to have to have the Zometa this week.
No additional tests scheduled for now, but I did ask about a bone density test, since my last one was 6 years ago. I got to thinking about that because of my hip pain, and was wondering if some of it could be thinning in the bones there from all the cancer drugs and from having radiation there twice. He agreed and said it was a good idea. I'm waiting for a call back with the appt. time, it couldn't be scheduled while I was there in the office because the hospital's computers were down.
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August, I bet your onco really loves that when you quote things I have written on here. My onco does not like the message boards....and another woman in the treatment room once told me she doubts if he likes the fact we all sit and share our experiences and thoughts in the treatment room....Not that my oncologist thinks he is God or anything, but I have learned that he doesn't like it when you question what he is doing. One time I asked about a treatment someone was doing on here with success and he asked me where I had heard about that and I said oh on the breast cancer message boards and he asked Why do you talk to "Those People"?....like you are poisoning my mind or something. My answer to him was Because they give me hope, that's why.
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Marybe, I know what you mean. I have had two oncs get downright nasty about the boards. (one was a second opinion at one of the "big 4 cancer centers". I love your response..".Because they give me hope." I have been off the boards for the summer, mostly because no access to internet where I have been staying. (hard to believe such a place still exists) I am here because the two aforementioned oncs watched my tumor markers march up steadily and because scans were only showing slight progression to my bone only disease, they kept me on Aromasin and then Faslodex much too long. When the markers hit 600 from 25 in 9 months, I went back to my original onc in VT. (we were in process of moving south when I was dx with stage 4 so had to find new onc) She was horrified (markers now up to 700) and took me off faslodex, did ct scans and sure enough, my lovely "bone only disease" is now in liver. I was responding well to Femera (first hormonal, prescribed in August 2008), no elevation in TM but scan showed slight progress in one rib so Tn onc took me off it. Because of that, Vt onc is trying femera again for 1 month, hoping for slow down in markers. I know that is not much time...but I responded quickly first time around. If it does not work, I am chemo bound. Sorry, what a mouthful. She mentioned xeloda, but have been reading your posts and wonder why we should not jump right to Abraxene. (I am also a long remission gal...original dx in 1992) Also, since I have only one lesion in liver right now is cyberknife an option? I know they do it for colon CA mets to liver.
Thank you all for letting me ramble on and on. I have missed the boards. They do so much for all of us. Education, humor, words of encouragement and sadness, but most of all "Hope".
And thank you Marybe in advance, if you have the time to respond to my questions.
Jackie
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I think oncologists need to understand too, that while they know how and why certain treatments work, they don't know how it actually feels to have to go through them. There are some things that only another person that is going through the same thing will truly understand how it feels.
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Jackie, I don't know much about cyber knife....there is probably a thread about it. I went to see an onco in my hometown to find out about radiofrequency ablation and something that I think was called IMRT. I wanted it done to get it out of my liver....my onco and the one I saw at MDA both felt it would not work since I am Stage lV and my cancer is systemic...said it could get rid of it, but it could also come back. Abraxane? I guess you know that was the one I really had a miserable time with. But check with August....she's doing it now and seemed to be tolerating it well. It did not get bad for me until after maybe 12 or 12 treatments. Now that I am on the navelbine and it appears to be working (at lst they went down a lot, but now tumor markers are back up almost to the 659 we started at now) and I was wondering Why didn't they put me on this one before doing abraxane? There is always a method to their madness, but they don't always tell us what it is and sometimes I think I have selective hearing....think I know what they said, but find out later I had misunderstood. We watched my tumor markers go up for a long time when I was on tamoxifen, but my scans were showing no change then finally when they were in the 500's he changed me to arimidex, but only for a brief time because he has heard aromasin got more dramatic results and it sure did for me....took me down to 18. I don't know what to think about my tumor markers, but am happy my cell search was zero. Today I got my regular old premeds and navelbine and my blood counts were all good. Next week I get zometa. I truly think the zometa not only helped get rid of the bone pain, it also kept the cancer from moving around in my bones and not going elsewhere. I sat next to a woman today doing taxol and carboplatin ( is that correct?) and then there was another one who does avastin, xeloda and something that begins with an I think( I am going to look up cancer treatment because I know if I see it, I will recognize it) .....she's doing very well and has been in remission for quite some time. There are just so many different combinations. Gemzar seems to be one that a lot of women get. Sorry, I don't have any real answers for you, but let me tell you this, having it in your liver does not mean it's the end.....yes, you are Stage lV, but I am living proof, that you can live a long time. Femara is one they never had me try. One thing that did not work for me at all was oral cytoxin and methotrexate....I think it is called meganomic or megametric therapy or something like that, but I only found that out from these boards....my onco just told me it was oral chemo and at the time he tried me on it, it was rather new. Unfortunately it did not work for me as it was a pretty easy treatment. Hang tough and keep me posted. Marybe
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Mom2acat, What does your onco say about dental treatment when doing chemo?
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Jessica73:I am sorry about your step mom. Poor lady. How nice that you are here trying to get info for her. I don't know how often scans are ordered and I think it depends on the oncologist. I have seen some postings that their oncologists did NOT have Stage IV patients getting scans which certainly seems questionable. My oncologist wanted me to wait until I had completed 4 chemo rounds of taxotere & cytoxin (getting it once every 3 weeks) before the first Pet Scan after diagnosis. He felt we would then have a better look at what was happening. Which I believe we did. But I've also seen posts where after 3 treatments doctors order scans. Probably depends on the patient's individual situation and the oncologist. Be sure and ask the oncologist when he plans to do a scan on your step mom.I wish you both the best.JudieOrig. Diag: 12/2000 IDC ER+ 9 out of 18 nodes positive.Mets Diag: 04/2010 Scalp, bones & Liver.0
