TRIPLE POSITIVE GROUP
Comments
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Hi All, Lago I am too having Fat Grafting.. Darnit, now my my mother has to stay with me for 6 weeks! Special K, I already have aches still from the knees down Yay more fun stuff. Just got hme from H. headed to bed..
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Hi, I have been thinking about the 'cross-talk' between tamoxifen and HER2. I don't really understand it very well but I am thinking that since I am HER2+ perhaps I shouldn't participate the in the clinical trial that I was interested in. They are comparing tam+DIM vs tam+placebo on recurrence and breast density. It goes for 20 months. The trouble is that if I make a committment to the trial I wouldn't be able to switch to an AI. From what I have been reading the AI sounds like it is more effective than tam for HER2+. Anyone have some words of wisdom for me? I am supposed to meet with the trial folks on Monday but she is calling Sunday night and I could 'opt out' at that time.0
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I think that the AI is more effective for ER+/PR+ post-menopausal women than the Tamoxifen, irregardless of HER2 +/-
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Omaz I would check with your onc. I did read once that Tamox might not be as effective in HER2+ but that was just one study. Also it might be because HER2+ women aren't usually as highly ER/PR+. In general the AIs are a little better than Tamox for post meno women but not huge. I think more oncs prescribe AIs not because they work better but because the SE might be less severe (no risk of uterine cancer or blood clots) not because the work better.0
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Thanks Linda and lago
Edited to add - I decided NOT to do the study. From what I have read I think the AIs seem to have a slight advantage over the tamoxifen for HER2+. It's not exactly clear from the literature but it's my impression. Plus my onc's original plan was about 1 year without periods on tam from the end of chemo to confirm menopause and then switch to Femara. I think I want to stick with that plan.
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Hey guys,
Just got in from a wonderful trip to San Diego...and wanted to share something I learned since we discussed it before here....
Guess who I met on the last leg back home? A female flight attendant two years out of MX and chemo!! Why is this important? Well, she had the MX, and also had over TEN lymph nodes removed. She flies 5 days a week (Sometimes more) and doesn't wear a LE sleeve.
When I asked her about LE, she said she didn't have it .. hoped not to get it and was told by an LE specialist NOT TO WEAR A SLEEVE while flying unless she has LE....because it can aggravate/cause it.
She's been flying for about 18 months give or take ... sounds like she worked right through chemo! (I can't imagine doing that...planes are GERM HAVENS...I have a really bad cold right now and I am attributing it to the plane for various reasons...)
Anyway, just wanted to share that...thought it was interesting since we discussed it right before I left for Dallas....
More later!
T
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Oh, my, I would think the same thing about airplanes. Good for her for getting through chemo on them.
I was told the same thing by the lymphedema therapist I went to. I don't have lymphedema, but I was having tightness in my arm. I had lymph nodes with cancer. I hadn't had surgery yet when I saw her. Just had the surgery Wed. and just got home today. But she did tell me, if you HAVE lymphedema, you must wear the sleeve when flying. But if you don't you should not wear one. Wearing one when you don't have lymphedema could actually cause it. She has been a lymphedema therapist for a lot of years and really seemed to know her stuff.
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Hey gals, I know the Herceptin will have to continue for another year .. but how frequent? Every 3 weeks like my chemo??
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hi aimska,
usually every three weeks for one year 17 or 18 cycles, first with chemo and later alone .
best
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Have you ladies heard that new research is supposed to report at a San Antonio oncology conference in December that will state that 6 months of Herceptin is just as effective as 12 months?
My onc said that if it reports as it is expected to, I would stop Herceptin in December rather than in February.I'm not quite sure how to feel about that...
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I agree pejkug, I am not sure how I feel about that either. I think at this point, I want to do the Herceptin for a year. I hope if that report does come out that the insurance cos. won't force that on us.
This is a really informative thread. I am going to ask my onc about the tamoxifin vs. AI for Her2 next time I see her. I'm 48 and wasn't in menopause when I started chemo, but got a period once after starting and nothing else. And the hot flashes and lack of periods returning seem to indicate that I am post menopause now. My onc is going on the assumption that I am premenopausal and going to put me on tamoxifin, but I think there is a blood test that would tell that for sure? Maybe I would naturally be post menopause now with or without the chemo. And if the AI's are better than Tamox that would seem to be important to know. Thanks for the info.
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pejkug - I have been wondering about those results, thanks for the update.
kay - I am a little older but was pre-meno and had one period after starting chemo then no more. I am on tam since April. I am going to talk to them about the tam vs ai tomorrow at my LAST (#18) herceptin.
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ugh so the port has to stay in for a year???????
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Sorry to tell you, but yes, it has to stay in for a year. And the aggravating part is there have been so many times when they won't fr*cking use it. They always pricked my finger to test white counts before I would get chemo. (But that finished three weeks ago. Yay!) And they won't use it for some CT's or MRI's. And they wouldn't use it when I was just in the hospital for MX and DIEP. I had two different lines for IV's then and an unused port. Ugh! But I just got home from the hospital from that yesterday, so life is good.
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But if I am getting herceptin as treatment rather than preventative and it is working, I will be on it for as long as it works, right? I only say this because I often sit next to another woman who is Stage lV and she has been getting herceptin for 8 yrs. Since I only recently changed from being HER2 - to HER2+, I don't know that much about it. I am set up for every three weeks, but they are going to have to alter this since I will be out of town for two weeks in Sept. The PA told me that was the beauty of the drug, that they could do it every week, every two or every three....all that changes is the amount of time with the infusion to go according to the dosage.
I wear my sleeve when I fly even though I don't have lymphedema and I also wear it when I am doing heavy yard work or lifting or doing things that might aggravate my arm....I get my swelling in that stupid pouch-like thing I have under my arm that the PS was going to correct when I had the exchange, but he didn't do it. So far this has worked for me so I am going to continue to do it, just as I wear my surgical support hose when I fly to prevent blood clots which I seem to get sometimes even though I am on warfarin.
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Yes, Marybe, that's my understanding. Your ins. co. should be good with your Herceptin txs for as long as the doc prescribes it. I'm stage 3 and the cancer is hopefully gone with the sx and chemo I went through, so they would not allow the Herceptin beyond one year for me. But since you have cancer that the Herceptin is working on, the ins. co. should not have any problem with you keeping up your txs. I wouldn't be concerned about it.
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Kay1963 I have a power port and when CT refused to use it, I refused the CT. They called the supervisor and the Radiologist, apparently there is a rule on the books that they have to be able to pull blood before they can use it and you have to have two forms with evidence of it being a power port. I have my card and the surgical paper to give them with me at all times. They did use the port, but let me know they were very unhappy about it. Still I'm a very hard stick and where are you going to put a peripherial IV on a bilateral mastectomy with axillary node dissection.
The Port is there for a reason, insist that they use it, trust me the LE they can cause by not using it is simply not worth it.
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aimska I do my Herceptin every 3 weeks just like chemo. I have my last (17th) in 2 weeks. It goes by faster than you think. My onc wants me to keep my port in for 2 more years after finishing Herceptin (3 years total). The reason is the 2 years after Herceptin is our highest risk of recurrence. If the port is removed it can't go in the same place. It needs to be flushed every 3 months. You can choose to take it out but I'm keeping mine for2 more years.
pejkug it really depends on how big the study is. It may only indicate that another bigger study is needed.
Marybe you are correct. I know a woman at my center that's been on it for 10 years. As long as it's working you will be on it. BTW I'm so excited this is working for you!!!
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omg congratulations lago!!! ugh 3 years with the port??!?! grrr >:(
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aimska - my onc doesn't require the 3 years with the port. Depends on the onc I think.
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Lago - Where did you get the info that the port can't go in the same place? I haven't been able to find that anywhere. Also, reading the port literature it says that it should be flushed every 4 weeks. Maybe that varies like everything else?0
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My onc told me every 3 months flush. My chemo nurse said it can't go in the same place. I also have a friend with cystic fibrosis that just had her 12 year old port removed. They told her too that it can't go in the same place. Granted she (my friend) would agree that is should be flushed more often.
Check with your onc
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Omaz, if I keep mine, it has to be flushed every 3-4 weeks....it is one of the main reasons I'm leaning toward taking it out asap.
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Just had my last herceptin 2 weeks ago. I was told mine had to be flushed every six weeks. (they even made the appt for me) Isn't it funny the different opinions:)
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Just had my last herceptin 2 weeks ago. I was told mine had to be flushed every six weeks. (they even made the appt for me) Isn't it funny the different opinions:)
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They need to be flushed every 30 days. I'm not sure about them not being put in the same place... I had mine removed before finishing Herceptin... not keeping that horrid thing for the what ifs in life...
And, as someone else stated... you have to insist that your hospital use your port... it has to be a power port if you are getting contrast dye power injected... but as for surgery... the nurses there are not use to accessing ports and do not LIKE to do so, but are perfectly capable of doing so... I had to insist that they use my port for MX, and ended up having to talk to the doctor who ultimately made the decision. Most people in a hospital believe that a port in someone with cancer is 'dedicated' for chemo... and that is not true!!
Keeping or not keeping it is a personal decision... I don't believe that is even your doctors choice. JMHO
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My port had to be flushed every 3 weeks...so funny all the variances! It was a pain, and I HATE that chemical taste I'd get in my mouth when they did it.
I got all kinds of blood draws, IV vitamin infusions, etc...and no one would ever use my port. One nurse explained that the risk of infection is super high with them if not properly accessed...so they like to leave it to the chemo nurses.
I got my port out after my last herceptin. My onc suggested it, which surprised me since she is usually about as positive as eeyore. I am so happy with it out, it makes me feel like chemo is done....forever. And I like that feeling.0 -
geewhiz - LOL 'as positive as eeyore'!0
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When I had my colonoscopy the nurse wasn't allowed (hospital rules) to access my foot for the IV. When I told her I had a port she was pleased because she could use that. When I had my exchange they used my foot though. They for some reason said it was better in the foot then the port. I really don't care as long as they don't stick my arms. LE on the left (10 nodes) and 4 nodes on the right. I don't need LE in both arms!
I'm going to have to do more research on this flush every 3 months. No way to I want to keep this in only to get infected or clogged etc. and have to get it removed anyway.
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FYI So remember a few weeks ago when I posted about my hands being numb when I sleep? Well, I'm receiving Herceptin today so I asked about it and here's the answer in case anyone else is having a similar problem. Keep in mind that I had no issues at all with neuropathy during chemo and this problem didn't start until almost 2 months PFC and only happens when I sleep. The doc is saying that chemo can cause nerve damage to varying degrees and that in my case it may have been slight to the degree that it "sensitized" the nerves so that when I sleep on my side and put pressure on them it's enough to lead to the numbness. She also said that it could be the onset of actual neuropathy but we will hope not and time will tell. As with all nerve damage from chemo, she says it will likely improve over time. It certainly seems like a plausible explanation and I suppose all of these things can occur from mild to severe...0
