TRIPLE POSITIVE GROUP
Comments
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Awesome Jenn!
I didn't see you were from Australia until after I posted that comment. Glad you are getting health care from people who are allowed to respect your decisions!
Let us know how the scan goes!!
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Moni just to add to what Kay said even if you have no nodes and a MX/BMX rads can still be recommended. Matter a fact if your tumor is over 5cm it usually is. Also it depends on the location. If your tumor was close to the chest wall or close margins rads may be recommended. I was in a gray area and got a pass but typically tumors over 5cm do get rads even with mastectomy. My BS assumed I would have rads. This was my rad oncs call though.
Jenn sorry about the news but I do hear that tumor size can go up or down a cm. If it's any consolation chemo does a great job on grade 3 cells. Let us know how the tests go. Wishing you best of luck. I did get my first level nodes out (10 nodes on the left). My nodes were clear. My BS told me my chances of getting LE were low. I was diagnosed with LE after my 4th chemo tx. It's mild but does suck that I have it and my nodes were clear. I'm actually worried about the other arm that had 4 nodes taken. I do feel some heaviness at times.
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Hello everyone! Thanks to all that responded. Overwhelmingly you guys are recommending rads. I hadn't thought about stopping if the side effects start, good idea. The plan was 33 tx's. I also lost 100 lbs through all this and now am way under weight. Finding it very hard to regain any, although the onc would like at least 25. But mostly, it's the fatigue factor. I have about 7 weeks of leave left before returning to 12 hours shifts (RN).
Wishing everyone a happy Yule season and at least some time of diversion from the constant reminder that you are different! Health in the New Year!
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Moni: I was allergic and had my chemo changed, also. I am going to do rads to improve my odds. Plus will have Tamox. Good luck with your decision. Dianenmil: just thinking that it is best to combat Her2+ any way possible. But that's just my choice. I've become reconciled over time to doing whatever they have available for me, that I am able to tolerate, that may enhance my longevity. Each new treatment seems a bit overwhelming, but it really does help me to take it one step at a time.0
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Moni I would agree with what others have said. I chose a lumpectomy and was advised that Rads is imperative. In fact, the recurrence risk for lumpectomy without Rads would be far too high and I don't think I would have even considered it as an option. As with the other treatments, I would think that completing part of the Rads course is better than none and you can definitely stop if necessary.
I can't believe what a terrible time you've had with treatment already. As others have suggested, there is good reason to believe that the amount of chemo and Herceptin you've already received may be enough since our protocols are based on large trials (and are not individually tailored) and they may in fact move to 6 months of Herceptin at some point anyway. You certainly deserve a break so lets hope that the Rads are a piece of cake for you!
Jenn Sorry that the pathology came back worse than expected. Hoping that your scan is clear!
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Hi all! I guess my major deal with rads is the time commitment=6.5 weeks and a 2.5 hr round trip. Secondly, the time lapse since the lumpectomy 6/2/11 to when I would start rads will be over 7 months. Since I didn't find the cancer until it had already spread to at least one node (I also refused to have the axillary disection) nor was a SNB done, I'm wondering if it is too late to hold it there. But the tissue after surgery was NED d/t the pre-surgery chemo.
Jenn hang in there! My pathology report also came back with a much larger mass than I had been told originally. I guess they can only be close.
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After reading your discussions, I am wondering if anyone else triple positive has been taken off their Herceptin. My oncologist yesterday advised me that I can no longer receive Herceptin treatments due to the cardiac damage that I am incurring in my left ventricle. She referred me to a cardiologist that I will see next Wednesday. After only 6 months of treatment, I was devastated with this news. After finishing the chemo with taxotere and carboplatin, 2 surgeries, and now my treatment stops because I cannot handle this medication. I am very afraid of what this means to my long term fight. I know that the chemo and surgery supposedly got it all, but it is not called aggressive cancer without a reason.
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ilboysmom - some women take a high blood pressure medicine and that helps their heart function and they are able to do more herceptin. Also, there are several trials looking at 6 vs 12 months of herceptin - I read on another thread that someone reported from their onc that early results from one trial are showing 6 months equally effective compared to 12 months. Maybe you could do tykerb. Are you taking an anti-estrogen?0
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I started taking Ramipril for high blood pressure at about the halfway mark of my TCH treatments which I had never had an issue with before. Then 8 weeks ago when I finished chemo and started the three week Herceptin therapy, I started Tamoxifen. So far, that seems to be going well. So, I received 24 weeks of Herceptin in total. I will follow the cardiologist orders as it doesn't do me any good to eradicate my cancer and then have a heart attack - just frustrating as I know how important the Herceptin therapy is. I cannot believe that last Christmas my biggest worry was catching a cold, and now I am seeing a "cardiac failure" cardioligist, on blood pressure meds, and fighting the bc. I cannot even tell all of you how helpful it is to know that I am not the only one out there. It is so hard for family and friends to understand how these little hiccups can seem so big to me.
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IlBoysMom,
I had to stop Herceptin as well...started a thread called "Herceptin Heart Attack" you should join us there!.
http://community.breastcancer.org/forum/69/topic/776430?page=4#idx_108
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TonLee - I wonder why they don't offer women who are not able to complete the herceptin the option of finishing the year with tykerb - what do you think?0
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ILBoysMom, I am in the same boat. I am not sure if I can do more of the herceptin or not. I get another echo on Monday and will see if it improved or not. I had 10 txs before discovering the heart issue. There are a couple of others too, come join us on the herceptin heart attack thread. There is a lot of good info there.
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I don't know anything about it Omaz. I couldn't even begin to guess....
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IlBoysMomI sent you a PM
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TonLee - When I was diagnosed I was offered to participate in the ALTTO trail: In addition to chemo -
Trastuzumab alone for 52 weeks
Lapatinib alone for 52 weeks
Trastuzumab for 12 or 18 weeks, followed by a 6-week break, followed by lapatinib for 28 or 34 weeks
Lapatinib in combination with trastuzumab for 52 weeks
But I heard that the Lapatinib alone arm didn't go as well (tykerb) but I am not sure. I didn't join up.
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IlBoysMom: Please be aware that there were never any tests done to determine the amount of time required for Herceptin. The year was just a made up # and nothing scientific. They are now studying it and looking like 6 months is sufficient. I too had to stop after #10. Seems there are more and more of us now. The other blog is great! The SEs are horrific...I also have macrodegeneration. BIG BOO!!!!! and no treatment for it.
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My onco told me while I was still in chemo that they had only done trials on Herceptin for a year - but he said, "who wants to be the one who did 6 months and find out later that it's not enough." I think when we all get put into making all these decisions, that we finally come to realize that the docs are all just doing their "best guess" to what treatment will be right for each person. Some of the studies just aren't there yet like we think in our minds that they are. We realize how much that it's just not "an exact science." After I had my first treatment of TCH and then had a reaction on my second infusion and had to be taken off and switched to AC - the onco said there were just not any studies as to what to do if someone has to switch chemos. The standard of care said 4 treatments of AC, but that's when you just have AC the entire treatment so as my treatment started with AC I thought I would have to get the entire 4 treatments, but after he started talking to my other docs and looking at research, he was comfortable with 3 treatments since I had gotten 1 TCH - that's kind of like making it up as you go along but I was comfortable with that decision. I could have opted for 4, but went on his recommendation and he didn't decide this until the day I went in for my 3rd and final AC so I know he contemplated it a while.
That's why it is so important to continue to do studies because each piece of information helps get a little further. I hope and pray that the studies continue to be done on Herceptin and that a person will soon not have to decide between the best treatment of HER2+ and taking the chance of heart damage. We all continue to hope that they could do it in just one treatment!
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Typical getting different stories from different oncs since mine said there were never any studies on the amount of time required for Herceptin and that the year was just a made up time. I sure don't know.
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Hello everyone,
It's nice to have time to get caught up on my favorite threads is these forums. My drains were finally pulled this past week and now I have another busy week starting tomorrow but at least I feel like treatment has started and I'm not waiting all the time. I had chemo class Friday and the nurse teaching it knew her stuff but reading the experiences of the ladies in this forum I knew everything already. My MO has asked me to do one of the new research drugs that was discussed recently in San Antonio. I see the PS tomorrow for first consult re: reconstruction. I see the vascular surgeon Tues for an armport. At some point this week I'm supposed to meet with the research nurse to go over the new drug trial( I'll write it down so I can share it with everyone). And then towards the end of the week I see the MO who will tell me when chemo starts next week. Along with my family's support and the encouragement I've received from you guys I have a very close friend that has been with me at every appt/ hospitalization that my husband has been unable to attend and Friday she was notified of an abnormal mamo so we have spent this weekend playing the "what if?"game. Tomorrow morning I will be with her and her husband as she goes through the repeat mamo and ultrasound. As I've started this journey every little episode that has been accomplished I've thought "That's not so bad. I can handle this." When I heard about my friends suspicious mamo it's amazing how my mind went right back to the day I got the same news. I so don't want her to have to go thru this. Let's hope that tomorrow all is negative and she doesn't have to do this. Prayers for my friend tomorrow.. Hugs to everyone, D-too. ( I'm d-too because she's D-1)0 -
Went walking because I need to take care of my heart. Why is it hard to get started on something so good for me? But I did it. Achpurple: I was allergic to TC so I had to go off, also, but my onc won't give me adriamycin with Herceptin, so I'm on Navelbine. Are you off Herceptin for now?0
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Good news. My friend's repeat mamo and ultrasound were negative!!!!! What a relief.
Tomorrow I get my arm port. A little nervous. At least it's scheduled for early morning and I don't have worry about it all day.
The research drug that I've consented to is pertuzumab. It's a double blind study.
Going to bed early...hope everyone is ready for the Holidays, at least as best as can be with this dreadful disease....goodnight.0 -
d-too - great news about your friend. Good luck tomorrow. I was a little creeped out thinking about getting a port, but it isn't bad. I wish mine were in my arm. When do you start chemo?
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Good luck D-too. Never heard of a port in the arm. Sleep well!
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Great news and good luck d-too! I have never heard of the port in the arm either, but I also think that would be easier. I think the sx will be easier than you think. I hope so any way. I know you will be glad you have it. Best of luck.
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NancyJill: I had my AC treatments before I could start Herceptin but just got my #13 Herceptin today (4 more to go) Other than having trouble during infusion of Herceptin so far my EF is still within normal range - lower than when started though.
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I've heard of an arm port. There are many locations the arm being one of them.
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So Lago: If we have our ports removed and they can't (if we ever need them again) be placed back in the same location, looks like the arm is another option. Actually the arm sounds weirder to me than the chest....not sure why!
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Yes exactly. There are other locations other than the arm. I don't remember though. My port was placed Oct. 4th 2010. The initial appointment was less than a week before that. I was about 4 weeks out from my BMX. My head was still in a whirl from the diagnosis to getting my boobs lopped off to startng chemo in a week. That seems like such a long time ago. I was so scared and in shock at the same time.
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Judy67,
I start chemo between Xmas and New Years and I didn't get my port today but tomorrow morning at 0600 the port will go in. I misunderstood and thought the port was going in today but it will be tomorrow early. When I spoke with the surgeon today it sounds a lot like a PICC line only the end is attached to the infusaport and placed under the skin. They use the basilus vein. They also make sure it's the one that tolerates the higher pressure injections for like MRI contrast. It's very new in my area so I hope I'm not a guinea pig. Oh what the heck somebody has to try it. I'm also in on a new research drug too. Tomorrow is going to be a long day. Goodnight all.0 -
d-too - hope its quick and painless. I have a power port too but mine goes from my chest up my neck and into my jugular. Sounds creepy doesn't it. But I haven't even noticed or thought about it today. It's been 3 weeks since it was placed. I start chemo tomorrow so we will be on a pretty close timeline. Sleep well and hugs for tomorrow. Judy
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