Chemotherapy for Stage IV
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Hi all,
I was wondering if I could jump in here. I am a chemo for life girl (TNBC) and a BRCA 1.
Up until recently I was using Gemzar as a "maintenance" I get it every other week over 90 minutes. I had a pet/ct scan the 27th and it showed progression in 3 new spots but the rest had remained stable. You are m ore than welcome to read my bio for my full list of chemo's. I have accomplished a lot in almost 2 years. Anyway my onc wants to add Avastin to the Gemzar..I have been politely stalking Avastin users which led me to this thread. Any advice would be greatly apperciated...
Also what do they use for premeds for the Avastin?
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Hi all! I was diagnosed in May with TN. Did the usual 4DDAC, no change. Then 6 out of 12 Taxol. Had slight reduced Tumor after 3 weeks of Taxol then it started growing rapidly over the next 3 weeks. Emergency surgery removed left breast and 14 out of 20 lymphnodes positive. I am a miraculous stage 3 (after clean pet scan 2 weeks ago.) and docs say I should have been stage 4 they had assumed that I had mets. I am starting Gemstar/Carboplatin on wed. I am in a lottery for the parp. Just found this out today. I thought I would automatically get it which is what I had been told. I'm curious as to what SE's I should expect from the Gemstar/Carboplatin. By the way I expect to win the lottery quickly. Lol. Actually I have been mostly optomistic with this whole unexpected mess. I plan on getting through this chemo like the others I'm just curious as to what to expect from SE's. Do they sneak up on you like Taxol. I am still loosing my nails and have slight neropathy from it even though I haven't had any in 4 weeks. I still have one drain in to much fluid to remove yet. I guess they are still eager to start my new chemo and so am I. By the way it was a beautiful day here in Indiana. Looking forward to another tomorrow. I hope you all had a great day too!
Laura
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My wife has stage 4 breast cancer, which has metastacized to her lungs and bones. She was diagnosed in November of last year and started Herceptin and Taxol (sp?) treatment in December. The Herceptin treatment stopped a few months ago but she still gets Taxol and some other drug every 3 weeks. She has also undergone 2 weeks of radiation therapy. Through it all, she keeps getting MUG scans, heart scans, brain scans and every other scan imaginable. The last scan revealed that fluid levels had risen a bit in her lungs. So her doctor wanted to put her on Herceptin again. The Ontario Health Insurance disallowed it! So now my wife's doctor is looking around for an alternative. Is there any member here from Ontario who has had the same problem? What are the alternatives?
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Machiavelo, I don't have any experience with herceptin, but am just posting so this will stay active and someone can give you some info hopefully. I think it is wonderful when husbands get involved the way you are doing. I also think it is a crime when health insurance dictates what treatment you can or cannot have. I will say my prayers for both you and your wife. All I can tell you from my experience is that I have had bone, liver and lung mets since 98 and I am still plugging along. Marybe
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Hi Allison,
Happy that you are doing so well on Xeloda. I am near the end of my third cycle of a week on and a week off. I find my feet so painful that walking around the house is a painful challenge. I am sorely tempted to skip tonight's dose. I am having a big argument with myself!
Greta
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Hi Machiavelo,
Why was your wife taken off Herceptin? If it is thought that it wasn't working you can't go back on it (there's no point if it isn't working). That's probably what OHIP is thinking.
There is a trial at the Ottawa Hospital: An Open-Label Study of Trastuzumab-MCC-DM1 (T-DM1) vs. Capecitabine + Lapatinib in Patients With HER2-Positive Locally Advanced or Metastatic Breast Cancer that might be worth looking into. T-DM1 is the new-and-improved Herceptin. From what you wrote, I think your wife will qualify.
You can search for trials here: http://www.ontario.canadiancancertrials.ca/
Good luck!
Elizabeth
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Marybe ... I've been with my wife every step of the way. She is the only wife I have ... or want. As for the studies, thanks konakat, I've started looking at them. The one you've pointed out sounds good but I think that may be the one that just rejected my wife. She has spots on her brain which may or may not be related???? I will keep looking until I find something. Oh, by the way her oncologist took her off Herceptin because she had been receiving it for about a year and she (the oncologist) felt that it had run its course at that time. Now she feels that more Herceptin would be good. I did talk to her about the other drug, Tykerg but she says that it is still only at the experimental stage.
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Sorry ... adding to my favourites.
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Well, ladies, It is time for a change in treatment for me....probably past time, but my onco felt that the navelbine was containing the bone mets since last scan said no change on them.....it did not say stable or anything like that, just no changes.....however he did start talking about finding something that would work on the liver met. He was talking about chemoembolization and I started a post on this, but did not really find anyone to talk to who has had this done....looked as if two from past posts did, but sadly are no longer with us. I am thinking maybe this was a last effort for them, whereas my onco is just trying to do something before things are really bad.....only think this because when they do the tests, my liver function is still normal and no liver enzymes even elevated. Just my tumor markers....they are at an all time high for me....called today and they are 1,098. Anyway, when I was discussing this embolization procedure with him at my appt last week, I pointed out to him that I do have coagulation issues and am allergic to contrast and it listed both of these factors as reasons a patient would not be agood risk for the treatment. I think he forgot about the allergic reaction I have to the CT dye, which made me a little uneasy. Not that I am this guy's only patient, but surely this should be noted in big fat red letters on my chart just like an allergy to penicillin would be. So then he said he would discuss it with the radiologist and maybe we would do ablation. I said But you told me before the radiologist was not recommending ablation for me because of the location of the tumor in my liver and it would mean going through my lung! So I don't know what we are going to do and obviously neither does my doctor. I myself am ready to try a new chemo....either Gemzar or xeloda. I know he said at one time the hand peeling/ foot issue that could come with xeloda would make it one he wouldn't consider for me because of my job....but I know women on these boards as well as ones in the treatment room who do not have a problem with it. I have an appt Wed at 8:20 so guess I will find out more then. I don't know why, but I am not really upset about the CA 27/29....probably because I still feel good and everyone says I look great. Makes me stop and think at times Is this really happening or is it just a bad dream? Isn't there some new drug they were releasing the end of the month? I am sure someone wrote about it on one of the threads.....am open to suggestions.
Justpayton....did anyone ever answer your question on premeds with avastin? I got aloxi, deca something which was a steroid and I think something along the lines of pepsid or some other antacid....know the deca one was a steroid and I am one of the few who likes steriods.....I was just full of energy until Day 3 and then it was zzzzzzz time. I know the premed was a combo of three.
Hope you all had a nice Thanksgiving. Marybe
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Hi Marybe,
I hope you get better and the treatment works, Hang in there
The drug you say I think is eribulin mesylate (Halaven), approved 11/15 That's the last one I heard of, but maybe you heard of a newer one.
Hugs and lots of love
Happy Thankskiving,
Best Regads,
Carolina
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Carolina, That's it! Thank you so much. BCO message board comes to the rescue once again. I will ask both my onco here and the one at MDA.
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Glad to be of help, you are an inspiraton (truly, If I feel down I read your posts)
We're all here on the same boat, fighting this disease or wanna be informed because someone close who is fighting.
It's supposed to work even on patients that had recieved several types of chemos.
Hugs
Carolina
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My mother is stage 4 breast cancer with mets into bones, lungs, abdomen, and liver. She has been on a number of chemos: 1. Taxol + Avastin about 2 years ago for about 4 months that put her on remission. Then she decided she wanted a break & stopped the treatment. 2. Xeloda: Cancer started progressing in about 3 months & the oncologist put her on Xeloda. She did not give it a full chance because had a hip fracture - she has not finished even the 1st round stopping after 10 days. After she had a hip replacement surgery the oncologist put her on 3.Abraxane (same family as Taxol, so he knew it was working). That worked for a bout 6 months. The last CAT scan showed small progression in the liver. According to her oncologist, her only option left is Ixempra with 20% chance of working. According to him Ixempra will wither work or she will pass away.
I have hard time believing what has been said: after being on Taxol/Avastin, Xeloda (not giving it a full chance), and Abraxane, her only option is Ixempra with 20% chance?
If anyone has any experience of anything else working in such a case, please respond.
Thankfully,
Lena
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Hi Lena,
It may be that it is time for your Mother to get a second opinion? There are so many chemo combination options available, and new ones being tested, so getting another opinion may well be helpful in providing more choices of treatment.
Good luck!
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Justpayton1,
I am on Avastin+Taxol. The premeds I get are indeed Decadron (steroid), Zantac, Benedryl and Aloxi (anti-nausea) - all via infusion before the chemo starts. I usually have my chemo on Thursdays (every other week), feel fine on Fridays (though very red of face from the steroid) so I can go to the office, and then I have to give myself the Neulasta injection for WBC, so I usually crash on Saturday. Start recovering on Sunday and am able to go to the office gain on Monday.
I've had good results so far from this regimen, and hope your treatment does the same for you!
Best of luck.
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Lena, I second it for a second opinion. I do not believe Ixempra is her only option, but then again I am not an oncologist. However, I do know that my oncologist is now researching what to do with me and when I saw him yesterday he was suggesting liver RFA (ablation) which I have not made my mind up about yet....Navelbine is the chemo I am currently on. He also mentioned several other treatments when I was there and the onco at MDA says I should try Xeloda. So since there are options for me, I would think there would also be quite a few for your mother. Go for another opinion.
Carolina, I asked about the Eribulin when I was there.....he said it is a good drug, BUT they don't have it yet (I am not sure if he was talking about his group or in general here in the US) and he said then there would be the matter of getting the insurance co approval. As of now he is keeping me on navelbine....thinks it is working since the cell search has not changed. I question this, but as I said earlier I am not an oncologist and mine told me there is no urgency YET so I get some time to think about treatments and even I may be going for another opinion on this....back to the rad/onco I talked to over a year ago about ablation when my onco did not think it was a good idea. This whole thing is so confusing, but there are many options out there and also hope. Don't any of you give up on that last one. Marybe
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Hi Marybe, yeah it's a really new drug.
We must never lose hope.
Hugs
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I'm 34 years old and was just diagnosed with stage IV- I think.. it started in my breast and spread to my lung.liver and bone.. But they only found about 2 spots on my liver- which are supposedly gone now after 2 treatments and 1 spot on my lung and 2 on my bone. My doctor never staged the cancer.
I have a 22 month old and am scared beyond belief. How do I know if/how much time I have with her? I feel so positive that I will beat this, but I also want to be realistic. I feel great! I've had only 3 treatments now and I believe I have 21 more to go. Anyone out there that can relate??
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Hi Jessica,I am so sorry you have received this ugly diagnosis. But I think you should have started a new thread, because I almost didn't see your post down here at the end of this thread, and I think others may not have either. Anyway, I just want to tell you, I'm sorry, BUT to also welcome you here to this board. There is a lot of good medical info here, as well as compassion and support.I know you must be scared with a baby to care for too. But there is hope. Some of the women on ths board have lived a long time, and with good quality of life, with a Stage 4 diagnosis. Welcome to the community, and yes, we can all relate to your feelings.Judie0
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Just got out of the hospital after 10 days - severe abdominal distension, pain, runs for 2 weeks, couldn't eat, lost 15 lbs. Finally called the ambulance in the middle of the night. My 2 oncologists do not believe it was a reaction to three cycles of Xeloda (4000mg daily). The gastri guys think it was. I had no intestinal infection so it's all a mystery and a miserable one and although home I am still not out of the woods with the runs.
Anyone else have this bloating problem?
Thanks
Greta
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Hi Jessica,
I had a seven-year old when I was diagnosed in 2007. I've been able to enjoy Christmases, birthdays, vacations and the daily challenges of raising a tween. I'm so glad you are feeling great! Your treatment is most likely working. There are no guarantees, but life can still be very good even with our diagnosis.
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Jessica, I had a 23 month old when 1st diagnosed with stage II and just took it and did what I had to do to get done!! Pushed thru with her as my cheerleader. Then when it spread, she was about 3 1/2 and mentally it took a while to wrap my head around the thought of "always being on treatment." It really bothers her when I don't have hair, and we are thankful I have hair at this time. I have been blessed to have been on nothing but avastin since February 09 and still have no evidence of disease. For those who asked about avastin premeds, I just get zofran and IV fluids. no steriods/benadryl etc. I did take both when I took the avastin with taxol/carboplatin. Anyway, learning to appreciate each day, holiday, birthday etc. and try not to take anything for granted but at the same time balance those little fears that pop in my head periodically. The "what ifs." That's been a much harder to do since the FDA is trying to take the avastin away. STRESS! Still praying we (those of us who are doing great on it)get grandfathered in. I still think it should be available to the many of may need it in the future but the FDA seems to feel differently...We will see....Hang in there and "try not to go there...." Christi
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I've completed 6 rounds of Taxotere and now I'm on a 2-week break, then I'm to start up another 6 rounds (once a week/6wks). I can't do it. I called my oncologist yesterday to see if there is something else to try. The good news is that the Taxotere seems to be slowly reducing my CA2729 tumor markers! But, I can't handle the allergic side-effect. My eyelids and cheeks were deep red - almost purple, and hot. My eyes constantly watered. Of course, I lost all my hair (and now question if it will come back at all from other forums I've been reading). The worst symptoms of all is that I've lost my sense of taste. It's unbelieveably depressing. I SMELL everything and food smells wonderful - can't wait to eat! But when I do, it's awful, like the taste of eating cardboard. It doesn't matter how much seasoning I use. Water and milk even taste funny. I'm scard that it won't come back. My tongue feels like "pins and needles" alot of the time, too. I'm just really down in the dumps about the whole thing. Christmas was awful, I felt awful, looked awful, food was awful. I've lost too much weight, and force myself to eat daily. I'm starving, but it's like all I have to eat in cardboard flavored food. I just want my taste and my HAIR back:( Please tell me my taste-buds will return!
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hi, this i4 s sahil i m fron INDIA, Hyderabad.
Recently on may 2010 my mother is a 4th stage breast cancer patient with HER2 Positive got pleural effusion in her right lung and that fuid was removed on may 4th and she was nerved on abraxane and gemcitabine till 6 months 6 cycles of chemotheraphy. knw she is very much stable i.e janurary 6 2011. i m afraid that till when this chemotherapy work and will that plueral effusion comes again and when it comes. Please i need some good suggestions plzz help me for it..
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Herigo, I lost my sense of taste as well as my hair and nails when on Abraxane which is part of the taxol family.....everything came back. I especially missed the sense of taste, but certainly did not lose any weight as I was on a quest looking for something I could taste all the time....found chocolate milkshakes were comforting even though I could not taste them so had a lot of those. Hang in there. Maybe they can reduce the dosage or find an alternative to keep the CA27/29 down.
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Good to hear from you, Marybe. I just found out today that my onc wants to start me on Abraxane next week. From researching it, it sounds like it shouldn't have as many side-effects as the Taxotere. After reading your post, it sound like I still could suffer with some:( I guess we will find out! I think my sense of taste is very slowly, but surely, on it's way back - I hope. I guess I've been expecting to just wake up on day and have it be back - obviously that's not going to happen! I've just been really down in the dumps lately - chemo is so hard and has made me feel so bad. I have to say I also get so tired of hearing my onc talk about my "palliative care" and "some women with my stage of cancer live another 5 or sometimes 10 years" - I don't even want to hear stuff like that:(
Lisa
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Abraxane was hard on me....really hard, but there is a woman I talk to in the treatment room and she has been on abraxane for 2 1/2 years, still has her hair, it did not affect her nails and she seems to be doing just fine. She has pretty much lost her appetite, but I should be so lucky to have a SE like that....not much keeps me from eating. I think dosage and invervals make a difference.....I got it weekly. I will say it did work for me and sometimes I think unless I do have SEs the treatment really isn't working....at least that is the way it has been in looking back at my treatments. So far Gemzar has not made me feel bad at all.....but I have only had one treatment so just have to wait and see.
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I have done what appears to be the typical DD A/C treatments with Neulasta 4X, then moved on to Taxol/Herceptin Weekly 12X. I just had treatment 10 on Thursday. All my chemo has been accompanied by a day 3 bottom. I too picked Thursday so I could crash on Saturday and recover on Sunday. SEs have been manageable, although I hate the weight gain, the searching for something to satisfy the taste issues is true for me too! I think food tastes like a small nugget is wrapped in a huge wad of wax! Definitely gross. I did my rads for my bone met (yes, just one rib with cancer) over 13 treatments while getting my Taxol/Herceptin and it fatigued me a bit more than I expected. Lucky me has a job that will let me work out of the house, so I only made it to work twice in the past 5 weeks (it is an hour commute each way which seems hardly worth it when I am tired, which is amost always). I think the steroids have made my face a perfect circle with a double chin...lol. I am so glad there is light at the end of the tunnel nearing the end of the chemo meds. I will still have to have weekly Herceptin until I've completed a year, but I am told that alone Herceptin is a breeze. It will be time to focus on my running and wait until spring when they can check the bone and hopefully I'll meet NED, every Stage IV girls dream. Meanwhile I'm busy checking every little bit of hair growth on my still bald looking but covered with white peachfuzz head!
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Itzmeshel, Hopefully there is always a light at the end of the tunnel. I remember when my hair was growing in and I had that fuzz, I just couldn't keep my hands off it, found myself rubbing my head all the time. My hair is a lot softer than it was before and for awhile I did have some wave in it, but never got the curly hair they kept saying I would get. I just left mine gray and actually like it a lot. I have always had my treatments on a Wed.....after the steroids I am going great guns until about Friday afternoon, then all I have to do is sit down, and I am asleep sitting up, but boy do I ever get a lot accomplished Wed. night...barely sleep at all and am still pumped up on Thursday, but don't stay up all night like Wed. I am probably one of the few who actually like that feeling of having energy to burn, but not the appetite increase or full face. Just keep thinking, this too shall pass. You will probably get facial hair when the hair first starts coming back. I remember looking in the mirror and thinking Jeeze, what next? Now I am growing a beard. BUT it went away. My friend who just finished chemo a few months ago went through that also and I had forgotten until she called me all upset and said she had hair all over her face and I couldn't help but laugh and assured her it will go away. We learn a lot we never wanted to know going through this, that's for sure.
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hi, this i4 s sahil i m fron INDIA, Hyderabad.
Recently on may 2010 my mother is a 4th stage breast cancer patient with HER2 Positive got pleural effusion in her right lung and that fuid was removed on may 4th and she was nerved on abraxane and gemcitabine till 6 months 6 cycles of chemotheraphy. knw she is very much stable i.e janurary 6 2011. i m afraid that till when this chemotherapy work and will that plueral effusion comes again and when it comes. Please i need some good suggestions plzz help me for it.
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