TRIPLE POSITIVE GROUP
Comments
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Omaz I read that when I was first researching treament. I was ready to give that info to my onc if she recommended Adriamycin or Cytoxan as my chemo regiment. I had Taxotere/Carboplatin so I was more at ease.0
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Lago - My onc was also very much in favor of taxotere/carboplatin because of the potential heart problems with AC plus herceptin.0
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I do notice many of the women who are node positive (especially more than 1 node) tend to have Adriamycin. Just an observation I have no information why.
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Yes... AC here (1 node +)... but my onc did 12 of taxol/herceptin FIRST, then DD AC... then back to herceptin. TTE still with very good cardiac output... monitored every 3 months. I can exercise my heart so I don't worry about cardiac impairment... it's the damn cancer that I didn't know how to treat!!!! ((HUGS))
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Lago:
That's interesting because I have a positive node and am being treated with TCH. Do you think I should question my onc about this????
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KrisKat, I have 4 positive nodes and am getting TCH. Though the original plan was for DD AC...there was some sort of Adrimyacin shortage and my Onc suggested TCH. I researched it, and jumped on it.
The research I found showed little statistically significant differences between women treated wit TCH and Adry.
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kriskat - The BCIRG006 trial which used TCH had node positive women and high risk node-negative women in it. Link
Of the women in that study who got TCH 29% were node neg, 39% 1-3+ nodes, 23% 4-10+ nodes and 10% >10+ nodes (slide 10). It appears that TCH is very similar in effectiveness compared to AC->TH for disease free survival at 72 months for the node positive women (slide 22).
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kriskat as you can see no need to panic. I said I noticed that many not all women with nodes are getting Adriamycin. You can ask about it but I'm sure you are doing the correct course as is TonLee. There are many things to consider besides a few nodes when deciding on treatment.
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When I went to the Mayo Clinic, they recommended a chemo regimen with AC x 4 biweekly then Taxol x 12 weekly.
My local onc recommended TCH x 6. I asked him why and he said that the administration of AC is regional in part. Different parts of the country prefer different drugs. He was recommending TCH because of the reduced risk of long term heart damage and/or leukemia. I'm 35 and he said that the minimal increase in effective rate wasn't worth the risk to him.
He did say that if I really wanted AC, he would give it to me.
I didn't push the issue.
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In my mind and after "studying" the boards I felt like with Herceptin most were giving us TCH. Since Herceptin has potential for heart problems it seemed like A was not being paired with it so often. As far as the chemo choice I trust my oncologist. libraylil0
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I had my 8th Herceptin yesterday and was given 2 benadryl before again since last time I had what they think was a mild allergic reaction. The night after my infusion I was incredibly itchy in my port area and then was red in a 1x3 inchish splotch by my port. I was avoiding benadryl b/c I'm on Tamoxifen, but when it wasn't cleared up for a week I called my onc's nurse. She told me to take benadryl and that cleared it up within 2 days. Has anyone else had this reaction? My nurse said it was strange since I hadn't reacted before and that usually if you have an allergic reaction to the Herceptin the rash forms over your entire chest.
Another question...(I posted it in another thread but haven't had any responses yet).
For those of you who are done with Herceptin when did you have your port removed? I had an appt. with my breast surgeon yesterday and they want to take it out 1 month after my Herceptin is finished. I thought I would be super excited to have it out, but it has become a bit of a security blanket, especially now that I have mild lymphedema in my right arm, and I just wonder what they would do if I had a recurrence. Would/can they put a new port in? Also if you've had it done what is the procedure like/recovery like? I am planning to get married weeks after the removal and cancer has already made me sacrifice quite a bit as far as the wedding goes, and I really don't want my pictures to have a horrible sore incision that is super noticeable. I had my port in with my BMX and I remember it taking a while to heal.
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Smile-on -
I am wondering about the port removal too. Has anyone ever removed it after chemo and done the rest of the herceptin through their veins. My port sticks out like I have an oreo under my skin....
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Sime_on Congrats on your up-coming wedding. My surgeon said that he would remove the port in the office. Dont know what that entails, if he actually makes another icision, but I would think he would have to. I dont know if I want it removed too soon though, like you said, just in case there is a re occurance do I want to have it put back in? I dont know how long you can keep it. But I do know if its not being used you have to at least go in and have it flushed every so often to keep it open.
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I'm curious about port removal as well. Mine still bothers me and it's been in since August. Lately it actually hurts. Anyone have that problem? I'd love to get it out, but not sure how Herceptin is to the veins.
As for MUGA scans, you definitely need one before starting on TCH so they have a baseline to judge if your heart function has decreased during treatment. Then every 3 months throughout.
I've had 3 so far. 67, 66 and now 62. If it gets close to 50, my doctor said that would be a concern. I considered 62 close to 50! ha. I've noticed in the last month that I'm more winded and my heart beats faster. The side effects of these Cancer drugs are just not fun.
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smile - I wonder if you are reacting to the heparin that they put in to 'lock' the port.0
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Smile_On. I have mild LE in my left arm and my right arm is at risk. They can give chemo through the foot, I've seen them do that at my place when they couldn't access a vein from this older woman in her arm. Also I would assume if someone needed to do chemo again they would just place a new port. I should be interesting with me because I'm not letting anyone stick my arms for blood tests in the future… they better have someone who knows how to do it from the foot are it's not going to happen!
Anniemomofthree my port sticks out too but at least I have a juvenile port. Yeah, I was so small I had to get the kiddie size. More like a Reeces mini. I've decided I'm not going to worry about it sticking out. I'm not going to cover it up this summer. People want to know what it is I'll tell they its Agent Smith (Matrix) or some odd story about the government/Alien tracking device. I'm sure they will stop asking questions and walk away… very quickly with those stories
Do a search on this forum. Lots of women have had their port removed. From what I read it was very uneventful.
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Concerning AC vs TC for node positive, my onc explained that it was a regional thing as well. She felt strongly that TC is much better when paired with Herceptin to avoid heart issues.
Has anyone researched the "super" herceptin? I know it is still in trials, but wanted to learn more about it. Something to keep in the files as a just in case.
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Port removal is very easy... small incision and they pull it out, and yes, they can place a new one if you need one later... but we're not thinking like that!!!!
As for the port... I just tell people I have Alzheimer's and it's a microchip because I get lost alot... what can I say... I hate the sad stares when I say I had cancer... and then to try to explain biological therapy to people... wow!!! It's easier this way!
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For those worried about port removal, mine was a piece of cake. It was an office procedure with local anesthetic and all I felt was a little tugging. That was July 2009, two days after my last Herceptin. I now have a faded, 1 inch scar under my bra strap line that doesn't show in any of my clothes. As far as AC vs TC goes practice has changed since I was treated 2 yrs ago with more oncs going for the TC it seems. I did dose dense ACTH with no residual side effects, cardiac or other, and am doing well on Tamoxifen. There IS a light at the end of this tunnel.
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I was about 15 minutes into Taxotere, then had the reaction. They gave me lots more Benadryl and steroids, waited about 30 minutes and tried to infuse slowly. After about 10 minutes, I had reaction again. Stopped Taxotere completely, then started Carboplatin, 5 minutes into it, another reaction. Stopped Carboplatin completely and said Herceptin wouldn't cause any reaction, 5 minutes, another reaction. Ended up in ER for tachacardia. Onc called the next day and wants me to come in for a visit before my next chemo on March 9. Don't have any idea what they want to try next.
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Oh, achpurpel, such a bummer. Let us know how your onco visit goes.
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Lago when you say "juvenile port" does it look like this? (This is my port, the one they punctured my lung while placing. It is a powerport but I don't know if it is normal or juvenile.)
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achpurple - Yes, please let us know how it goes!0
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Tonlee I dont see the incision where they put yours in. I have and incision inthe folds of my armpit that is about and inch long. the nurses in onc tell me that mine is very deep and they use the 1in. needle to get all the way in, can hardly see a bump, but I am also chubby..ha ha I noticed on the elderly with thin skin that it really sticks out.
Achpurple, sorry about the reactions VERY SCARY keep us up to date about your progress. I know they will figure out alternatives for you.
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Hi, TonLee. Thanks for inviting me to the triple positive forum.I am very new to all things related to breast cancer, since I just got my diagnosis in January and I just had surgery (uni-MX) last week. I have done enough research to know the meaning of the +'s, and I certainly know there is herceptin in my future.
I am less sure about the interaction and long-term situation with the E+ and its treatment, and whether it is good or bad to have E+/PR+ when you alreaady have HR+. Is there a post (or a book or a website) that sort of "summarizes" the state of research, prognosis, and treatment for women with triple positive bc?
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welcome windlass libray lil
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Carberry,
The incision is horizontal right above the top. I don't have a lot of fat on top so it sticks out a bit, and is always sore after chemo for a few days (and after I do pushups).
Welcome Windlass. I'm sorry you have to be here, but glad you found us.
I don't know of any one source on being triple positive that gives good summary info. It is one of the reasons I started this thread.
When I was diagnosed my surgeon actually said, "the good news is, you are ER + and HER2+, both of which have treatment." Of course he didn't go into details, I learned all that later...and I wouldn't call it good news, heh.
There are various different treatments (as you will likely read) when it comes to being triple pos.
When do you start chemo? Do you know what chemo you will be taking?
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TonLee: My bs wants me to do radiation ASAP, and chemo after that. I don't have a radiation oncologist yet, but hope to by the end of next week.
Any clue why they do rads first?
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Welcome windlass! It totally sucks to have breast cancer but the 'nice' thing about being triple positive it that they have at least four avenues of attack for us - radiation, chemotherapy, anti-hormone therapy and targeted therapy (herceptin). While these treatments can be challenging they all improve our odds. It feels good to get started and get settled with your medical group. Ask any questions that come up for you. Best wishes for smooth treatments.
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Windlass,
I haven't heard of anyone getting a MX, Rads, THEN chemo. Though I do have a friend who did chemo, lumpectomy, rads.
Hmmm.
Maybe it is because you have so many positive nodes? Radiation may work faster in killing the cancer in that area than chemo. Do you have your lab results? Was there more info than the # of positive lymphs? Were they macromets? Micromets? (This generally refers to the size of the cancer cells found in the lymph nodes.) There is a discussion here about lymph node involvement..
http://community.breastcancer.org/forum/71/topic/764770?page=2#idx_60
I'm sorry I can't offer you more substantial input at this point....I'm coming down off a Tues. treatment and my brain is not clicking...
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