TRIPLE POSITIVE GROUP
Comments
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Oops...forgot to add (for Footballnut)...loved see my man, Peyton Manning win his first game. I'm also sorry Pbrain, but I can't support the Colts since they released the best player!!
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Regarding food - I had already been a very healthy eater before, so not much has changed there so far. I was vegetarian at home ( might eat chicken while out to dinner) but am finding turkey sandwiches are appealing, so I've been buying some turkey to have on hand. Back in January I started making a green smoothie every day (this site got me started) and I really think that helped get me into a more nutritionally sound state. Now I'm trying to make sure that I make the most of my calories so that my weight stays stable and I don't lose muscle mass. I'm on the low end of normal as it is, and I dropped a few pounds that first week or so of chemo, so I need to watch out for that.
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More on the Her2 cancer vaccine.. Looks promising at this point. Thanks to our girls Special K and Fluff for being part of trials!!!
Early Data for HER2 Breast Ca Vax Promising
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The AE37 and GP2 vaccine are the same trial - AE37 got more play at one point because it was determined that people who expressed Her2 at lower levels, too low to qualify for Herceptin, could benefit from the vaccine. The trial fluff and I are in just stopped recruiting for phase 2. Phase 3 has not started recruiting and then there are more FDA hoops to jump through after that. I seriously doubt that this vaccine will be available anytime soon, so I would not get your hopes up for that.
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VioletKali-I have completed 2 neoadjuvant cycles and was able to walk everyday-maybe not as fast on days 4-5 post infusions. By the second week post infusion, I could run.
Chrissie29-Stage 2B (8.4 cm IDC/DCIS on left with nodes looking clear on US) ER/PR/HER2+
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Ah shucks guys, you don't know how much Indianapolis misses Peyton. He's here a lot, still has a home base because he has Peyton Manning Children's Hospital. I love that guy and actually did want to see Denver win last week. I want him to beat his brother at Super Bowl rings!
Fluff, would you head up to the North side? Dr. Bhatia is fantastic, super smart, and very well respected. He doesn't run any yoga sessions though, but I'd highly recommend him. He kept a close eye on me during chemo, and as a clinical pathologist, I was mighty impressed with all the odd blood tests he chose to run on me. He found out I had very high ferritin with very low RBC count, so he tested me genetically for hemochromatosis. I know I carry one gene from my father, but he wanted to make sure I wasn't storing iron out of control with a second gene from my mother.
Chrissie, I didn't change my diet too much, just went organic much more than I used to, especially diary. I don't want any added hormones. I don't eat much meat, but if you do, again, go organic if you can afford it. The modern farms load animals up with hormones and estrogen (which is a fat) survives cooking and fuels our breast cancer. I also avoid soy like tofu, or as a filler like in peanut butter...it is everywhere and it contains phytoestrogens which are plant estrogen. Again, fuels the cancer.
And I am working on losing weight. I have about 25 more pounds to go to have a "normal" BMI, so I'm working on that. I think being overweight also increases estrogen because fat tissue makes it too, not just the ovaries.
Small peep here...go Colts!
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Pbrain, I would go north. My ob/gyn is there. I honestly didn't expect to stay south in the first place, lol. I am going to meet with the doc (Dr. Greg Smith) down here in October, just because I don't have the energy to try to interview and change everything in the next three weeks (and throw in a trip to NYC), but as soon as that is over, I'm checking things out. I loved Kathy Miller at IU Med Center also, who had the same protocol for treatment as the onc I chose, but he was close and easy, and the Simon Cancer is just so big.
On the diet, I eat almost everything organic when possible. I have gained fifteen pounds, seven of which has to be due to the Arimidex. I swear, I just look at food and gain weight now. I work out about four times a week, maybe more, including two miles of treadmill work at a fifteen-16 mile pace. Not speedy, but my legs really start hurting since i have been on the AI, and I feel like I have no impetus to do anything . Actually, everything kind of hurts. I plan to discuss that at my appointment. And I have a low grade headache at some point everyday. I am trying to push through it to see if it will even out, but i am on month five.
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And on the AE37 vaccine-they seem to be determining it helps triple negs a lot, and low expressing HER2. I'm hoping that doesn't mean that it isn't helping me, just helping others a lot also, but who knows. SpecialK, makes me wish I was the the other HLA! I'm glad you came along to answer the questions.
Momma-the Phase II didn't have a ton of people in it. At the Winston Salem site, I think she said they had 19 people. When we talked about it a lot last year (she sits in the room with me for the whole hour when I am vaccinated and observed, so we have become very good friends), she said she had two recurrences, but they weren't totally sure it was a true recurrence or that it had been there all along. It was pretty early in the process.
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fluff - if you are having trouble losing you might consider an anti-inflammatory diet. It was the only thing that worked for me.
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Hey everyone, just catching up. I've been on vacation this week. I am like everyone else, hoping fall gets here in a hurry. Nothing worse than football in the heat. For all you Peyton fans...rock on!!! I hated him when he was a Tenn Volunteer in college. I live in Arkansas now, and there is no one but the Razorbacks to root for locally. But, I grew up in Colorado and I am a die hard Bronco fan!!! So of course now I must embrace him.
I am gearing up for Race for the Cure. I have raised nearly $900 so far. One of my friends knit a beautiful scarf for me to raffle off. She just finished it today and sent a pic. Here is my link if anyone wants to donate. Hugs to all !! arkansas.info-komen.org/site/TR/RacefortheCure/LIT_ArkansasAffiliate?px=13312689&pg=personal&fr_id=4505
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Hi all - just stopping by to say Hi. I am doing pretty good. Most of the chemo SE's are gone - 10 weeks PFC. Having minimal SE's from the herceptin. Exchange surgery is this coming Friday - so looking forward to it. I hope I get to have it - have preop on Tuesday and hope my bloodwork is okay on the liver enzymes bases - if not it may delay my surgery until the cause is determined. I saw a GI doc this past Monday - he thinks that since I have gallstones that I may have sludge in my bile duct. He says if the enzymes aren't down on the preop blood test that he will do an MRI to see. I am supposed to be taking the arimidex right now but I am not starting it until after my blood work results. I just don't want anything else messing with those results.
SpecialK - haven't made a buc's game yet - those late afternoon ones are too hard for us as we don't get home until after 10 pm and need to work the next day. My daughter has used our tickets so far and is using them again this week.
Fluff - the weight just fell off me when I changed my diet for type 2 diabetes. I lost 60 lbs in about 4 months and it has stayed off. I didn't gain any during chemo but I also tried to remain on my diet when possible. My diet is alot like an anti-inflammatory diet like what SpecialK does. I really just minimize carbs though - get most all of my carbs from veggies. I also do not have any sugar - I use stevia as my sweetner for things.
Hope everyone else is doing good!! SpecialK - when is your surgery?
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Happy to hear you are feeling good Linda, hope ypur surgery happens as scheduled and all goes well. I'm 2 1/2 weeks pfc and feeling pretty good, but still fatigued. My brain wants to do more than my body can keep up with, lol.
I'm scheduled for bmx & DIEP recon Sept. 29, although I'm told that could change based on my bloodwork next week. My mo made it sound like its no big deal to change a surgery date, don't think he understands how disappointing it would be to delay.
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I think I'm getting my period after over 2 1/2 almost 3 years later. I spotted last Dec or Jan . As quick as it came it was gone and never spotted again. Well tonight I have more then spotting. Sorry I know( TMI ) I am taking my Tamox. should I be concerned? Should I call my Oncologist ? Is this normal ? Still was getting hot flashes up till the other day it started to get colder out so I thought nothing of it. Any info or opinion would be great.0 -
ang, don't be paranoid, but call your ob/gyn. That could be a sign you may have some side effects from tamoxifen. Make sure you tell them when you call so they get you I quickly. I just recently had to switch to an AI, after a suspicious Pap smear. I did not have spotting but was told if any should show up to get in immediately.
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Ok Thanks Fluff I think I will call come Monday morning.0 -
on the diet-I am disappointed in myself. I had lost fifteen pounds before diagnosis, giving up white sugar and flour. Then lost another 15 really fast during diagnosis, when I put myself into a panic disorder. I kept it off for 18 months then it slowly started creeping back on. I have gained 22 back. Funny though I look better than I did at this weight before. I think some of it is that I still work out regularly.
I did fall off my no sugar/no white flower. Slowly working my way back with slip ups along the way. I'll look into that anti inflammatory diet. My husband is pre diabetic, so we do try to watch it pretty closely. Unfortunately, I am the one who likes sweets not him, lol.
The memorial organized by my oncologists wife was really special today. She stood up and said she needed help in healing and dealing with his loss and thought that if she met his patients that he loved so much. It would help. There were 300ish people there. Several people spoke. What was truly amazing was the number of people who said oncologists had told them 6 months, and yet Dr V had them alive and in remission 3-9 years later. I spoke with her on the way out and she said how much it helped. She is an oncologist but hasn't practiced for a while as they ahead a late in life baby. I would go to her In a heartbeat if she came back In To practice. I think it helped everyone. Except they did force an enormous piece of cake down my throat, lol.
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ang7894 what Fluff said. Tamox can have these SE.
Fluff I lost switching to Exemestane. Right now I'm back down to where I was 3 years ago. Hoping the last 3-4lbs are not from the new job stress and it stays.
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fluff, I really enjoyed hearing about the memorial. Thank you for sharing that. It sounds like both your late oncologist and his wife were/are special people.
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Lago,I've been tracking side effects and plan to have the discussion when I see the oncologist in October. I pity that guy...not only is he going to get my questions for current issues, but grilling on why I should use him as an oncologist, lol.
He will probably be begging me to leave.
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An MD that doesn't respect the patient who wants to be involved like you like to be involved isn't going to be a good match for you or for most of us on this thread. While he will never be able to replace your last MO don't assume he isn't open to you.
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all the nursing staff came to the memorial. It was interesting. I truly don't believe they have much respect for any of the four. One of them came up, took my hand, and said I am going to find you a great doctor and will stay in touch with you. Three of the four told me to not go with the one that my physician friend had heard of at least, and suggested one of the others for the first appointment. They have to tread very carefully, but it was clear they had definite thoughts on things.
When I asked he wife if she was considering going back onto practice, and if so, if she worked with adults instead of kids I would be her first patient, all the staff turned around and said, we will be there with you.
Some of it, I think, is due to the fact that there have been huge changes, that started before he passed away. He was a small office on his own, but was the south version of this hospital's program for the most part, to be best of my knowledge. There were a few other things. Then, the hospital on other sides of town, had signed on to an MD Anderson affiliation. The Southside couldn't be a part until they met criteria. They built a big new cancer center, are moving a radiation group, my breast surgeon, etc all on the premises. My ONC's offices are now huge. We used to see everyone the second you walked in the door. Now, you hardly see anybody unless you wander around. Infusion roo. Is down on the first floor. So I don't even see the nurses there. It's a big culture change for everyone. I'm not sure I am crazy about it, not yet at least. It was one reason why I didn't choose the IU med Center. I think they just don't feel the same type of family group.
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fluffqueen all treatment places are moving in this direction. This is the new healthcare. Doctors are not starting their own practices anymore. Healthcare is changing. They are now big business and looking more at profits and how they can treat as many patients as possible. Keep that billing contant.
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Hi all, has anyone on here received their Herceptin via IV, not the port. I'm 2.5 weeks PFC and headed into my first Herception only infusion this week. I HATE my port and want to have it removed during my breast surgery on the 30th. My oncologist is on board with having it removed, I just don't want to set myself up for complications down the road. Anyone go this route?
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GinGin, here is a thread about that! Herceptin port vs IV
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GinGin- All my treatments were IV. I never had a port. No problems at all. Best wishes..0 -
I may talk to my MO about getting my port out a little early. I can't have the reduction on my left breast until it comes out. I would probably have about 7-8 Herceptin treatments left if I have my exchange surgery the end of Feb. I really want the TE out as soon as I can (mid to late Jan), but I would love to have one surgery instead of two.
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Fluff, Community North is big, but has a great family feel. I walked in one day to sign in at reception and one of the women to the side who books appointments called my name. She had my sunglasses I'd left at the last herceptin appointment, knew I was coming in, and gave them to me. I just laughed. They look like Dolce and Gabana, but they are total knock offs!
And, they decorate their fish tank for the holidays. I almost died laughing when I went in there right before Memorial Day and the fish were swimming around race flags and little Indy cars!
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pbrain! you took a new pic of you! you do have a high wattage smile!
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pbrain, ours is beautiful, but I think still too new for the little stuff. There is a social worker now (or if she existed before, she must have been in the hospital). Really great. Came to yoga a few times and wants to get it going again. They don't have the breast surgeon's office moved in yet, or my PS, etc. you walk in and wander around until you run onto someone. First time I went, the signs weren't up. I couldn't even figure out what floor his office was on, lol. Had to call them from the first floor.
Gingin....while my port bugged me generally, when my bra strap rubbed it, I thought it was the best thing ever for the infusions. I kept mine through the herceptin and then had it removed shortly after during some fat grafting surgery.
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OMG that fish tank thing sounds hysterical.
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