What Kind of Chemo for Triple Negative
Comments
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After two tests on my original biopsy that came back ER+ and PR+ and now two tests on my lumpectomy that have come back TN it looks like chemo is in my future. Sloan's pathology on my lumpectomy was TN and now I just back my Oncotype results. It came back TN with a score of 47.
I have an appt. with my Sloan oncologist next week to discuss treatment. Originally he said he would recommend the ACT course but now he is looking at some new study about CMF that says it may benefit TN just as well as ACT. Has anyone heard about this?
As for the chemo, either way, I'm concerned about the fatigue factor. And I'm very concerned about being susceptible to getting sick. I work in an elementary school (A hot bed of germs!). This CMF treatment is over 6 months. Will I be able to work? Will I ever feel like me again? I'm scared...
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Hi again Workmother,
I don't know much about CMF, but hopefully someone will be along with more info. As for the fatigue, is there any chance you could take a day or two off each cycle? For me with the AC, I scheduled my infusions for Thursdays so I could get my Neulasta shot on Friday and I'd have the weekend to help recover. Lots of people do continue to work through it all, but if you could take a few days it would probably be easier.
The Neulasta shot is pretty standard - it basically puts your body's white cell production into overdrive so you are better able to fight off infection. Especially being around young kids, it helps a lot. Also, kids like to feel helpful, so definitely enlist their help and understanding about the importance of hand washing/sanitizing, coughing into elbows, etc.
I was told to expect about a year of nothing but breast cancer focus, and I thought it was exaggerated, but honestly at the 1-year mark, I really did start to feel like I was slowly coming back to some sort of "normal" life. You will too. You'll find strength you didn't know you had. Be sure to accept all offers of help and don't hesitate to be specific about exactly what/when you need things done. People really do want to help.
Hang in there and ask lots of questions here. There's tons of great info here!
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Hi all,
Great info in this thread. My story:
Dx in January 08, see my info below. Had lumpectomy with what my surgeon termed excellent margins, no node involvement, no known mets. Had A/C chemo every 3 weeks X 4 doses. Then had 33 doses of radiation. Tolerated all very well. Very ready to move on!
Recurrence: Sadly, in Dec. 08 I found a new lump in same area as lumpectomy, after biopsy I got the dx in Jan. 09 that it was a true local recurrence, all the same markers as prior dx. BS strongly recommended mastectomy. I had a unilateral mast and tried for an immediate SGAP reconstruction, which failed due to poor vascular conditions in the flap.
Started A/T chemo about 6 weeks after surgery, every 3 weeks X 4 doses and also 4 Neulasta shots, one after each chemo. The Neulast was supposed to increase my white blood counts and help fight possible infection. I did get an infection in my mastectomy site about a week after the first infusion, this delayed, by about 2 weeks, my second infusion. The infected tissue didn't heal until well after I finished chemo :-(. Before chemo I had MRI on the remaining breast, bone, brain and abdominal scans all showing no suspicious activity.
My onc apoloogized several times for not recommending Taxol the first time. She explained that it's not usually the protocol with negative nodes and no mets.
I have been NED since completion of chemo in August 09.
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I am starting chemo next week on Wednesday. Dose dense AC/T for 8 rounds total (every other week). I can't believe I'm going down this road! In 3 weeks I'll be bald - wow!!!
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Maybe not, kittycat. I've been doing chemo since mid February, and I still have thin fuzzy hair (I had a pixie cut). I always wear a hat or scarf out, because I look a bit like a baby chicken, but can't bring myself to actually shave it.
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I can't stand the thought of watching my hair fall out! I'm going to get it buzzed at 2 weeks. That's when the shedding will begin. I'm glad you didn't lose all your hair, though!
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One doctor told me it might be genetics when I told him my Dad didn't lose all his hair when he got chemo for lung cancer. At the time, we thought it meant Dad's chemo wasn't working, but this oncologist told me there's no correlation between severity of SEs and the effectiveness of the chemo. Which is good, because I think mine has been a LOT less rough than I had feared it would be!
Hang in there, it'll be done before you know it.
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Kittycat, I hope your oncology department has a chemo class available. Mine did and it was wonderful. All the things I never thought about were discussed, and then some. A friend of mine is going through chemo and she wasn't told anything. The number one suggestion I have is to drink lots of water. You want to get chemo through your system and out. If water starts to taste bad, mix up 16 oz bottles of Crystal Light in different flavors and keep in the fridge. You can switch flavors as your taste changes and still get fluids.
I cut my hair short before chemo started, then had it buzzed when it started falling out. I finally had my husband shave the stubs off when they got all over the house.
My first chemo was a mix of emotions. I was glad to be doing something aggressive but scared of the unknown possible side effects. Remember to breathe....
Linda
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Hi Everyone,
I start chemo next Friday. I will have a total of 8 treatments, one every two weeks. The first 4 will be adriamyicin & cytoxin and the last 4 will be taxol. I am pretty nervous about it and have been having anxiety come and go. I like to be prepared for things and like to have control of what I do with my life. TNBC has come into my life and taken that control from me and that is what has me all messed up.
I had the bilateral, in the process of getting fills in the tissue expanders (which suck! and hurt most of the time), I'm back at work, I did all the research I can do on wigs, hats, etc. to help myself be as normal as I can through this journey. Now let the battle begin!
I 2nd the "I will be bald in 3 weeks, wow!" I too will shave my head, I bought 3 wigs in 3 different colors and will try to make the best of them. So silly, hair is probably the least important thing in the world but it makes all of us feel so much better.
Good luck to all of you and God bless
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So sorry your cancer came back. I am triple neg and the first time I had 4 adrimycin/cytoxan and then 4 taxols after my double maste. No radiation needed, nodes negative etc. stage 2 a...Within my first year, It spread to my lungs. that time, we went with carboplatin, taxol and avastin. It obliterated my tumor. anyway, I really think my tumor wasn't that reponsive to the AC combo. taxol is usually great for tnegs. but the latest findings are carboplatin/cisplatin as being great for TNBC. the only problem with taking those 2 drugs now is it can eliiminate you from trials with the parp inhibitors which are also showing promise for triple negs. The good news on that is that the parps should soon be released out of trials. Hoping I can add that to my avastin. I have been on avastin for 2 years this month and it has gotten somewhat better. mostly fatigue and joint pain/body aches for me. Good luck to you!
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As far as everything tasting bland, I found that citrus flavors come through great, along with mustard, vinegar, and pepper. If you can incorporate some of those in your food, it can really help with everything tasting like cardboard or tasting metallic.
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Hopedown-under
I have sent you a PM.
jezza
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Christi, you are my new hero!!! How long were you on your chemo combo before you acchived (sp?) NED??? How many lung mets did you have? I have been fighting TB mets (sternum and lymph nodes surrounding it) since November 2009. I got 4 1/2 years before my cancer came back. Anyway....I am currently on Abraxane, Gemzar and Avastin. We are hoping to see NED at the next scan in two weeks and then take a break from chemo, but am really curious to know how long you have been on just avastin and zometa? That was something that was suggested to us by the doctor we saw at the mayo clinic in rochester. the abraxane is giving me some hard side effects and I am really tired of it....but am on a clinical trial with these 3 drugs so I can't just ask them to stop them all together! Anyway....since reading your post, you have given me hope that NED can be achieved in TN!!!! PM anytime.....would love to talk!!!
Cathi
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kittycat: who did you see in Sloan..I go there as well. had my surgerty there too. I am also getting a/c and Taxol.. 4 treatments dose dense every other week and then 4 treatments of taxol as well.
my onc. suggested not to get a port..her feeling was why do more surgery if you don't have to and also a port can get infected. I was insistent on getting one but changed my mind the day before chemo. I am going on treatment #3 this upcoming wednesday and so far so good. I feel If I need one it can be done in 20 minutes if need by. Just something for you to think about.
btw.. Sloane is overwhelming isn't it? although the waiting rooms are nice and they offer great snacks and beverages (lol)
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Hi Kittykat,
I had TC chemo. My Dr chose NOT to use Adriamycin because it is hard on the heart and can also cause leukemia. My Surgeon in FL told me if I had a BMX I wouldn't need radiation. Then becauase of the TN bit, "I" decided to go to Dr HJurvitz at UCLA Jonnsson Cancer center becauase of her special interest in TN. Based on what they thought to be no nodes involved, and 1-3 cm cancer, stage I. After Oct 7, 09 lumpectomy, 5/6 nodes involved and cancer over 5 cm now stage III. Then did, 6 cycles of Chemo, then 5 mar. a mastectomy, am now starting 6th weerk of a 7 week course of radiation. Then home to FL and to the Moffitt cancer center to have a mastectomy on right breast as I have a papillooma in that one plus I found a small BB size lump last Tuesday and tomorrow I will find out what that is! What did your lump along the scar feel like? My chest is now deep red, the way the radiologist likes to see it, means it is working. Pretty itchy! NO tiredness yet. For the next two weeks, they are concentrating on the scar, before that it was the drain area, and the area of the original cancer. .My cancer grew FAST. From Aug 25th 1 cm to over 5 cm by Oct 7. My advice is MOVE FAST with TN, and do anything you can to fight it.
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Workmother... you may not get sick at all! I did not get nauceous, no fevers, no infections, no sickness. I did get tired after the 4th and 5th cycle, and food didn't taste very good because of a metal taste in my mouth, inside of my mouth would be rough for about 5 days after each cycle, my eyes watered, and about the 4 day of each cycle, my muscles would ach, like I had the flu , but then that would go away. They gave me meds for nausea, to help me sleep, for pain, for diahrrea you name it. It depends on the person on how sick you get, each person is different. Have a POSITIVE attitude most important! You will do great!
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I had Taxotere and cytoxan, every 3 weeks, three times following my lumpectomy, and prior to my mastectomy. Then after I had my bilateral mast, I was given another 2 rounds of TC. I did have a bad reaction to the Nuelasta, each time got worse. After my forth injection, I wound up in the ER, so it had to be discontinued for my next infusement.
My onc would not give me adriamycin, fearing heart problems
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njbhwgirl - I saw Dr Diana Lake. She gave me the same advice as my onco here (Dr Allison). I really like Dr Allison a lot. I was a little disappointed that they hadn't reviewed my slides and information prior to my visit at Sloan. I FedEx'd them the week prior. I saw Cara, the nutrionist there. I would highly recommend her. She was great!
I was supposed to get an echocardiogram last week, but the tech couldn't see my heard because of the implants. So, I have to get a nuclear test. They can use my port for that test. I'm so glad I don't have to get an IV anymore. I have horrible veins.
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Well, I was ready for chemo yesterday. They drew my blood and my husband and I were ready to go back to the chemo suite. Then, the nurse pulled me aside and said they aren't going to give me chemo and I had to go home. I had a MUGA scan the day before. My ejection fraction was 46.5%, which is lower than what they want for Adriamycin. 50-70% is the norm. The onco wasn't there and the other onco wouldn't make the call. I got a hold of the cardiologist. I'm seeing him on Monday. They might change my chemo. The onco is on vacation this week, so we'll see what happens when she gets back on Monday. I was so disappointed. I just wanted to get this started.
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Make sure to tell the cardio guy that the tech who did the MUGA scan seemed uncertain, and ask about a follow-up with a heart MRI. Feel free to relate my experience if you think it might help. It never hurts to ask, and your ejection fraction may actually be fine.
My apologies for continuing a conversation started in the Calling All TNs thread.
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I don't know if I can get an MRI. The nurse at the onco's office told me yesterday that my onco doesn't want her patients to have an MRI when they have a port. Of course, I could have heard her wrong. I was under some serious stress thinking I was going to have chemo (then got more stressed to find out I wasn't)!! I am going to tell the cardio that the tech was very unsure (to say the least)!!!!
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I have a port.
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hmmmm.....
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Sorry your chemo was put off Kittycat. You must be so frustrated!
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Sorry to hear your chemo was put off - once you've got it in your mind to start you're ready..... I didn't have an MRI with my port, but I did have an MRI recently and saw a notation on the form that said to notify the tech if you have a port. I'm guessing they can work around it.
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I'm getting another MUGA scan tomorrow at another facility. Hopefully it turns out to be okay.
I really want to start chemo right away. I know it sounds sick to say that, but the sooner it starts, the sooner it's over!!!
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I had taxotere and gemzar x 4 then adramycin and cytoxan x 4. Had complete reaction with no trace of initial tumor but did have in another area dcis. but waiting to see if i have recurrence now. soild mass in left axilla biopsy monday.
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rsben - I will think positive thoughts for you on the biopsy. Waiting is the worst! Keep us posted!
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After an appt with my onc at Sloan on LI and then a second opinion appt at LIJ/North Shore it looks like I am going with AC-T. That was the first choice for both oncs. My onc at Sloan's second choice was CMF but he really thought AC-T was better. The secondopinion onc practically begged me not to do CMF and thought that was just the wrong thing to do.
I never even thought I was going to need chemo in the beginning, with Stage 1 and no nodes! Got my Oncotype back and it was high. So here we go. I was hoping to do the CMF since its milder but I've decided I should go with what they both really agreed is the best. I am scheduled for the Mugascan on Friday morning. Hopefully that will go OK. I just recently (the month before the BC)was diagnosed with VERY high blood pressure. I'm on BP meds now and its totally under control but I'm concerned with the heart issue on Adriamycin. And the second opinion dr. did mention the leukemia thing. Hope I'm making the right choice. Trying to figure out the wig thing now too. Will go read those boards for advice!
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workmother - good luck on the MUGA scan. I have very low blood pressure and mine came back slightly less than normal. So, you never know! By the way, what is CMF?
So, speaking of MUGA... I got scan #2 today. The tech could see my heart, even though I have an implant. I was really excited and was anxious to get results. I called the onco twice. Her nurse finally called me back. She said it would take a couple days to get my results back. I am getting so tired of this waiting game. LET'S GET THIS SHOW ON THE ROAD!!!
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