TRIPLE POSITIVE GROUP
Comments
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I was told by 2 local docs and 2 major University Cancer Centers when I called to inquire about making an appointment that 'surgery is ALWAYS first'. They never asked if I was HER2+ or any other details of my case - but I don't believe it's become a new 'standard' yet - at least it hasn't affected the scheduling desks! It wasn't until my BS took my case to the Tumor Board, that they decided chemo first.
Note that I did have an excisional biopsy (not quite a lumpectomy but more than a core needle biopsy) so I think I'm still considered neoadjuvant? I don't think it would have changed the opinion of the Tumor Board though even if I hadn't already had the tumor excised. Dunno and it's irrelevant now...I will be getting Perjeta added to my regimen and that's what I feel is important!
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mini - I had chemo in 2011, so Perjeta had not yet been approved. Also important to note that the size cut-off for Perjeta is supposed to be 2.0cm or larger, although some have been able to get it for smaller masses. Oncologists seem to be able to administer Perjeta for smaller masses, and add it to adjuvant chemo, if they do a peer to peer with insurance companies. I have not seen posts from anyone who has tried to get Perjeta and been turned down by their insurance, it has mostly been a case that they were unaware of it, or their oncologist did not yet have experience prescribing it.
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Peeps! I'm so far behind and have to catch up on my beloved board!!! I miss you and I want to hear all about the newbies, so I'll get to reading. I finally took a vacation day. I've been involved with "the most visible project" at work and have been pulling out my beautiful, healthy, happy hair.
Fluff, did you ever hear from Dr. Bhatia? If you want to PM me, I can give you the contact info of his NP. He is fantastic, but very busy.
Ok, lots of short messages from me coming up as I read. I miss you gals so much! And I'm doing great! Sleep issues with Arimidex, but the neuropathy in my feet is getting way better. And if anyone needs some info on a natural product for hemorrhoids, I have become their new spokesperson tee hee, JK, but it is great stuff!
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Debiann, if you are on arimidex for 4 months with no SEs you are a blessed, lucky woman. I started in June, and by Christmas, I was barely able to hobble up the steps of the SEPTA train to travel to the airport. My poor Mom was in tears watching me go. Over January, I started to think about getting a cane (at 54 years of age). By March, I was back to my old self. So I think you are out of the danger zone, GF. Congratulations! Now, I really have no problems with arimidex, just some zits and some wanting to sleep through my alarm clock every morning...tee hee, pisses my boss off, but his wife is a survivor too with the same issues.
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Special K, you are such a great and amazing supportive guru on this board! I love your amazing knowledge about these new drugs!! Thank you!. :-)
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Mommato3 & formydaugher My MO told me that adjuventonline is alive and cancer free. I would be surprised if the others weren't the same.
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The Predict website just said x number of women are alive so I assumed that meant alive whether it was with a recurrence or not. I certainly like seeing alive and cancer free!
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pbrain - what a nice compliment, especially considering what you do at work!
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hey pbrain! I did finally gets through to Bhatias office. However, I met with Keith Logie this week and was very impressed with both his intelligence and compassion. I just decided to cancel my other two appointments and stay with him.
He spent over an hour just talking with me, and was answering questions before I even had to ask them. My worry is that he is 61, but I made him swear he would be around at least 5 years.
To all those asking about percentages, he placed me at less than ten. Told him my theory of zero or 100 and he laughed saying there was some truth to that.
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Hahahaha! Fluff, you crack me up! You remind me of myself watching pilots eat in the airport. If they are putting Brewer's yeast on their vegetarian meal, I want them flying my plane!
I'm so glad you've found someone you feel good about. I hear Community South is now MD Anderson affiliated, so you are in good hands!
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Hi Pbrain, I'd be interested to hear of your natural product for hemorrhoids. I used to use preparation H, but after reading the label I stopped because it is full of parabens.
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I have found the best solution for hemorrhoids is sitting in a warm bath.
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Pbrain, unfortunately I am no longer with the Community Network.
However, my late oncologist and my BS both laughed and rolled their eyes about the MD anderson affiiation. They say it doesnt mean much. Just looks good to patients. My oncologist actually said he had no need for that as he was better trained at organizations with better reputations. I think he did a lot of his work at the national cancer institute or whatever it is called. Both said it was more marketing than anything else.
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I haven't had an echo so I don't know how the Muga compares. Basically you lay on this narrow table and they place a strap across chest to hold your arms so they don't drop below the table. Then the table moves under the machine. They take 3-4 different pictures of your heart and it takes about 20 minutes or so. The machine takes a picture on the left side, straight above and the right side of your body. It does get really close to your face when it is directly above you but there aren't any sides on it so it isn't like being enclosed. I'll admit it was a little weird when the machine kept getting closer and closer but I just closed my eyes until it stopped moving. I've had four Muga's done and it doesn't bother me at all now.
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minivan-
I only had echos, so can't help you there, however, if I knew there was going to be some sort of blood drawn, I would always run by my ONC's office. They would access it and then then cover it so it was kept protected. I always did this before my surgeries.
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minivan -- RE: MUGA -- There is blood drawn which is then mixed with a tracer and shot back into you. I always use my port. The most time-consuming part of the process is waiting for the tracer blood to get back into circulation (20-30 minutes). At least at my hospital, the scanning only takes 5 -- 10 minutes, and my tech likes to do it in the dark (some light in the room because the door is open).
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Minivan, Muga scan is not as bad as it sounds. They didn't use my port either. They inject you intravenously with radioactive isotopes or something like that. It's a tracer that shows up on the scan to see how your ticker is pumping. After you're injected you wait about 30 minutes to give it time to circulate.
I'm very claustrophobic and can't tolerate mri at all, but I'm fine with muga. You lay still on a very skinny table. They do 3 scans, 2 are 5 minutes each and the last one is 10 minutes. There is a flat screen that hoovers over your body, but its open on the sides so you don't fell closed in. For one of the scans its kind of close to your face. Its not noisy like mri. I actually feel asleep last time. So that's it, in and out in less than an hour and you don't really need a driver. Good luck to you!
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Mini, MUGAs are no big thing, and this is coming to you from a major claustrophobic. My biggest fear once digesting the BC diagnosis was "how can I do this without crapping my pants in teeny tiny tubes?" You'll be fine, but I'm sad they won't use your port. They used mine and it made things so much easier.
Fluff, so you're saying the MD Anderson thing is "fluff"? Tee hee! I suspected it was for Marketing mainly, but it does make us unwilling victims feel better somehow. But yeap, I knew my docs were doing what they normally do. The only difference that I saw (maybe?) at Community North is that they had a bigger access to their tumor boards. I know I was a tough case, stage 1a, no nodes, but a pretty big tumor for 1a at 1.6 cm. I know I was up in front of tumor board a bunch.
Flavia, the site is Nolly's Naturals and the product is Hem B Gone (gotta love the name!). I have not taken it as directed (3 pills 3 times a day_ but instead take 3 at night. It is oral witch hazel extract and it seriously, seriously has worked for me! I can't say enough good about it!
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Thanks, pbrain!
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pbrain...that is a great name for a drug, lol
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minivan, I had MUGA s done and echos.my first time my left arm had to be above my head and it was only 2 weeks after my BMX! Can you say ouch?. I t took 20 min. Then they did it again on the new machine. The Radonc was comparing all the old readings to the new machine. Luckily the new one only took 8 min. By the time i was one i was shaking and crying. But they were very nice. They also did not use my port and tried to find a vein for a while finally found one yea. LOL the MUGA is more costly than an echo but is considered to be the gold standard.
Much love to all.
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For all of my sisters who are suffering from LE, I hope you were able to watch Kathy Bates on The Doctors. She is a high profile celebrity who is choosing to come forward with her struggle with LE after BC and to try to educate others. Thank you Kathy Bates!
Here is the link. http://www.thedoctorstv.com/articles/2953-kathy-ba...
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Has anyone had an ECHO done with expanders in? I had one yesterday and the tech had a horrible time doing this and this ECHO says my EF has dropped so I am not sure if it was the poor pictures or a true drop. Has anyone had this experience? Are ECHOs easier to do once expanders are exchanged? Is this why a MUGA scan would be more appropriate? Anyone know?0 -
I had an echo with expanders in. They had a lot of trouble getting what they needed around them. And it hurt a lot! I couldn't stop crying the whole time. I was pretty close post BMX at the time. No drop in results though. And no MUGA experience. But the echos were much easier after my exchange.
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With all of this good discussion on Mugas , I have a question. What risks are associated with a MUGA scan? I have had 9 MUGA scans since all of this stuff started. I'm scheduled for my 10th next week and I'm thinking of canceling. The reason I've had soooo many is because I'm in a clinical trial that requires MUGA scans a lot!
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My first echo was with expanders, it was around 65, I think. then I had to have them removed due to a pseudomona infection, so second one was with nothing, but it wasnt comfortable either. Third one the expanders were back in. Uncomfortable and fourth and fifth, final one was with the implants. Not painful, but weird, as they have to move them around a lot. All of this was while I was on herceptin. Mine dropped to 50 on the fourth one, which was the end of herceptin. the fifth one was to check it three months after and it was back up again.
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Formydaughter and Fluffqueen-thanks for the info. I thought it was painful when they were taking pictures from below my expanders-my ribs felt like they were on fire. I am not looking forward to the next ones because I will still have expanders in for all the while I am on Herceptin.
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Yeah, it wasnt fun, lol. They tried to be really gentle and did a pretty good job. I went a lot smaller in size than I was, so they didn't have to work too hard to get to where they needed, but it definately wasnt comfortable. Not to makeyou worry, but it was less comfortable as they got bigger because it was a lot tighter. Take a pain pill before you go. My onc said he would order a muga if the counts were dropping and looking suspicious, but I only got close to the edge on my last infusion.
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@PMR, so many messages to get through but i was scheduled for 6 rounds of TCHP but stopped TC after my 5th due to SEs and completed the HP on my 6th.. i had a complete pathologic response as well!! truthfully, if the chemo is working and they find that it is gone in a MRI after the 4th or 5th.. maybe you don't need 6 sessions.
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Girlstrong I do believe MUGAs expose you to less radiation than CT scans.
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