TRIPLE POSITIVE GROUP
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Congrats Football !!!!!
Vivian
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So happy you are done!!! You are just adorable, Footballnut!
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hi ladies, would love to know if blood test is mandatory with each herceptin cycle... do you have your blood taken for basic haematology results each time you go for herceptin?
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yen. I had TCH 5 today and I asked about that and was told no and also won't see the dr each time like I do now. She said about every 3months I would have a echo of my heart!
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Thanks Agent99. i had TCH too.. am really questioning the necessity of the routine blood test with each herceptin session in the hospital i'm using at the moment.. since my blood levels have normalised after the chemo.. doesn't seem necessary.. and finding that different people seem to have their blood tests at different intervals when it comes to Herceptin.
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Yen,
I have Herceptin weekly. I just completed #40. I also receive echos every 3 months, I see my MO every 2 months now and they do a CBC once a month now. Things slowed down a bit for me after I finished chemo (while on chemo I was tested weekly and saw MO monthly).
You MO may do things differently, just ask how often tests are done and why they are needed if you think it's too often.
Take care,
V
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I have been having mine checked, but my WBC's and Neutrophils tanked on the tri weekly dose. Back to weekly Herceptin and Neutrophil count is back to normal and WBC's are close. Will not have weekly CBC done anymore, most likely every 2 to 3 weeks until stabilized then once a month. My MO's office generally does not do CBC's with Herceptin only treatment as they see more cases of anemia vs. neutropenia and feel that the extra blood draws in those cases are more detrimental than helpful.
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I have only herceptin I see MO or. NP each time and labs every week.
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Once I finished chemo I had NO blood tests on Herceptin only. I had one during rads, ordered by the rad onc. I requested lab work at one Herceptin session because I wanted to know if I was still anemic, and they did run it for me, but the oncologist never ordered any lab work after chemo.
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Once I finished chemo no more blood tests and didn't see my NP or MO till my scheduled visit. Had one MUGA before treatment and that's it… which doesn't seem to be the norm.
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woo hooo footballnut!! and YAY football season!! I tried to watch last nights game but fell asleep at the end of the first quarter. I really have a hard time making it past 9 pm now lol.
yensmiles - I still have a cbc on treatment day (every 3 weeks) and see my MO every other herceptin treatment. I am also still having a CMP and that will continue until my liver enzymes return to normal. My CBC on tuesday was totally normal so not sure if that will continue now or not.
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I see the MO every 9 weeks and have blood drawn then for review. Herceptin every three weeks. Muga every 3 months. Only 7 more Herceptin visits!! YAY me!
Congrats FBN!
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Congratulations FBN!!!! You always exude such joy! I know it's hard to keep it up, but you do a great job of it!!
Welcome, and sorry you have to be here, to all of the newbies.
Congrats on FOUR years dancing with NEW Lago!
Congrats on the weightloss Pbrain!
I know I haven't been around a lot lately, and I've missed some {a lot} of things, but I have been reading!!! I currently have a good excuse for my lack of attention though as I am totally loopy after my EXCHANGE SURGERY yesterday!! Everything went as well as it could, so I just hope that the healing continues and I can feel like this is a good time to "move on" a bit from all of the fear and uncertainty. Just yesterday one of my sweet friends who had lymphoma got a call that she relapsed and another good friend is having major issues with her recon. Sometimes it's all just too much and too heavy, so for a while, I feel like I need to just support my girls and try and focus on the fact that I am currently healthy and hopeful that it stays that way for a good long time. I'm still waiting for the day where cancer doesn't cross my mind...
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awesome news FBN. !
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FBN, congrats a million times! You are definitely a joyful person and I'm so happy you survived the 6 taxols. I'm like you the taxotere just did me in. Knocked me on my giant white heine. So glad you are done!
And YAY Moon! You know I was like you with so many detours on the treatment path, so I'm so glad to hear the Mg2+ has finally leveled off and chilled out. It is so weird how our bodies work. Not sure if I ever told the group this, but when I got out of the hospital after my first and only TCH treatment, I went to the Kroger to get some food because I knew I had to have something to eat. As soon as I got in there, with no appetite at all, I realized all I really wanted was molasses cookies, spice cake, gingerbread...anything with friggin molasses in it. I bought some cookies, gingerbread cake and ginger ale. I never want these foods, and I'm not a sweet eater. And one of my good friends made me a homemade ginger bread loaf and some homemade molasses cookies and I wolfed them down even though I still didn't want food.
So I go to my next chemo and the nurses tell me my potassium is super, duper low. They give me a list that they give to those low potassium patients of the foods they should eat, in order of concentration. At the top is treacle. I ask my nurse what the heck is treacle. They all start chatting and pondering, and one googles it. Yes, it is molasses. To this day, I believe in food cravings.
Yen, this leads into my answer. I had my blood drawn at every herceptin because I was still low on potassium and I had gotten very anemic on taxol. So they were just checking me. If you have normal results after chemo or a few months later, they'll stop testing you. I didn't have normal blood work until a year after my final chemo, so they were checking me out for quite a bit.
FBN, GO COLTS! tee hee!
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That's so interesting, PBrain. I guess my potassium was super-low in the hospital. I wasn't able to keep anything down - the anesthesia and pain killers made me so nauseous. A new nurse decided to give me a potassium pill - OMG, up it came in seconds and it took an hour for me to stop throwing up. I'm anemic, too. They gave me four units of blood. I don't know why I am writing all this, but I guess I need to research what I need to be doing to help fix all this!
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Thanks so much for sharing on the blood tests for herceptin Vivian, RobinLk, princessrn, PatinMN, lago, Linda, pbrain, ddgm1003!
Pbrain, your potassium experience is making me question why am i craving potato chips now!!!?? well..everything in my blood test is normal.. so lol, i think i just want comfort (junk) food!
and Lago, LOL, i wonder if you looked as energetic as you do in your profile picture all throughout treatment then, and hence the doctors think the MUGA unnecessary! I went to see a cardiologist in July when the TCH regime seemed to give me some strange side effects.. now attributed to heartburn (and not heart attack), and after an ECHO, stress test, blood test, he told me for my age and health, unnecessary to even do it every three months.. and to go back at year end or early next year instead.
Minivan, my surgeon (very experienced and most reputed in my country) stopped short of insisting on chemo when she got to know my HEr2 and also KIP67 results.. though she rolled her eyes when sensing my hesitance on chemo (i tend to ask the same question, in many different ways, hoping the answer would be different when it's not what i want to hear). All 4 oncologist i consulted also recommended chemo, only one in a government hospital didn't and left the decision to me (which i suspect is more due to budget and more pressing cases than mine). And all said if budget is a constraint, to drop herceptin and not chemo!
have a good day everyone!
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minivan Why are you getting your ovaries removed? Are you BRCA positive? If not then there is more than one approach to getting ovaries removed, on not. What is the is the rational. Your age? You can surpress ovaries with drugs like Luprin so you can take one of the AIs. Typically I would think this would be your MOs call not your surgeon. Ideally we should all get 2nd opinions especially when it comes to surgery. If you have doubts then 2nd and even 3rd opinion might be required… but be sure they give you the reason so you can understand and make the proper decision… otherwise you will go with what you want to hear.
yensmiles I pretty much looked like the healthiest person in the chemo waiting room… and that included patient friends and family. LOL. Makeup including little powder bronzer and blush helped but I also didn't feel bad most of the time. I was working out through most of chemo. It really helps with energy. The would ask me about shortness of breath etc. When I told them I was power walking for 50-60 minutes outside in the cold winter they didn't seem to be concerned about heart issues with me.
Unless you have a very small tumor (I think under .5mm) they recommend chemo and herceptin for us HER2+ gals. Also the younger you are regardless of HER2+ the more likely they will recommend chemo.
For you newbies: For most of us Chemo didn't make us feel like crap every day. Many of us were functioning, working, making dinner, caring for kids, driving our car, taking the bus and working out. We were a bit more tired, bald and had some other issues but most of us were not flat out on our backs or in constant pain. The trick is to get the SE under control. Exercise will help with your energy if you keep up with it. Walking is fine. I'm not saying some women didn't have a rough time… they did but most of us did OK. Granted some chemo combos are a bit more challenging then others. It's not like you see on TV. My personal experience was chemo was annoying as all hell. By TX 5 & 6 I wanted to be out of the sandbox but really I was 2/3 of the way through by then.
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good morning all!
Tx so much for your kind words!!!! I so appreciate it!!
Football has started. Woo hoo! May sound nuts but I had been so looking forward to this since starting chemo April 30. I always knew that when football started chemo would be done!
So happy to see PEYTON best the colts - sorry pbrain. I still like the colts but can't cheer for them again until PEYTON retires!!
:-)
I have what I consider to be a discomfort on my left side near my lower ribs. It's been off and on for 3 weeks. Feels a bit like a pull - when I lie on it at night I can feel some sort of pressure and then within 15 minutes of waking up it is there. Not a pain. More like a dull ache. Called my nurse today to see of dr might want to see me. I don't think that it's anything serious but just curious why it's there. Hubby suspects a pull or maybe chemo liked that spot. I have a few aches left from taxol but this is the only consistent
Newbies I agree with lago. I tried to exercise all through chemo and it truly helped. It reduced fatigue and side effects. Now that I'm nearly a week done I feel some added fatigue but keep trying to push myself. If I don't hit they gym I try to walk outside or do weights at the very least. Helped with tummy issues too.
Now for brekkie, gym and practice the geetar!! Rock and roll!
Have a great day all!!
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I begin chemo on Monday. Taxotere, Carboplatin, and Herceptin. I enjoy exercise, and my biggest fear is fatigue and lacking the ability to exercise.
Do you recall the days which felt the best to exercise? I know I will have some rough days and feel VERY unwell..
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Hi VioletKali,
I get what you're going to get, plus Perjeta. It's different for everyone, but after the first week I definitely felt up to going for walks. If I hadn't had two migraines 5-7 days after my infusion (unrelated to chemo, just something I get anyway) I might have felt better sooner. I'm 12 days post-infusion now and feel pretty good overall.
I hope the same is true for you.
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Welcome Violet Kali!
My TCH cocktail included taxol as opposed to taxotere . Each of us has a different reaction to the treatments . You will be given steroids prior to/ & or during and after treatment to prevent nausea and other side effects . I felt fine during after for 3 or 4 days post treatment. I was on a steroid " high " with lots of energy. The steroids , however, caused a constipation problem ( never had it before or after ) and that plus various fatigue, aches , pains, funny tastes , insomnia( it varies among us) kicked in around day 4. The new nausea meds are great. No nausea whatsoever! The next 4 maybe 5 days were uncomfortable but absolutely manageable for me. I had no desire to workout then but could have. After that it was mostly steady improvement till the next chemo at 3 week intervals.
Very important to hydrate and report any unusual or worrisome events to your doctors!
Best wishes as you go through treatments. We'll be here with you!
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violet... I was unable to train. I was able to work full time and care for my kids. After chemo about 3 weeks I started again. I'm about 4.5 months pfc and am running 4 days and biking 2 strength 4. I weight about 10#less now then when I started. I gained weight in chemo but lot was swelling for me so went away with strict diet after.
Don't worry about it. Do what you're able to do. Good luck
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Someone on another thread posted info on this vaccine trial. Any thoughts?
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mommato3-SpecialK and I are both in a vaccine trial. For us, whether we were in the Ae37 (which is me) or GP2 (which I think is her) depended on whether your blood was HLA positive or negative (I think-i didn't go pull out my study). We have been hearing a lot about the AE37 stuff, but not so much about the GP2 (if i am not giving out totally wrong info, lol), so that would be good news. I have travelled to Winston Salem roughly 17 times in the last three years. I go my last two times in October. One for the vaccine, and three weeks later for the followup bloodwork. The first 6 months i had to go down there every three weeks, I believe. SpecialK goes to the Washington D.C. site. My late oncologist thinks vaccines are the future for early stagers.
Speaking of my oncologist, I received a letter today from his wife (a non practicing pediatric oncologist). She is organizing a memorial celebration for all of his patients this Saturday. In the letter she said that she wanted to meet with the patients that meant so much to him and to celebrate his life with all of us. I thought that was pretty special of her too. Too bad she isn't an oncologist for adults. I would have my next doc all set up. For my October check up, I am keeping one of the doctors they assign to me. He has a decent reputation. I requested a 30 minute meeting as I told them I planned to interview him, just like I did with Dr. V, so he should be prepared.
If you had to find a new ONC three years out from your diagnosis, what would you want to ask? I'd appreciate any input. Maybe I should start a new thread addressing that.
I've been away for a week or so,, as my 87 year old mom fell and broke her femur near the knee (which was a replacement from 1997.) She has a new hinged replacement, and is in rehab. She is still very with it, but the facility keeps calling me on her insurance, etc. I tell them I do not have POA. They freak. I have had this conversation with her before, however, I think this might be a good time to revisit it since she is confined. She says she is not giving me control of her finances.
First of all, she has very little savings, as my drug addict brother bankrupted her, unbeknownst to us until it was way too late. Second, I am not sure what she thinks is going to happen at 87 years old. The woman drives me out of my mind. So, I nicely gave her the pen, notebook and told her that she could work with whatever needs to be done for medicare, banking, etc and that I hoped she liked making phone calls and waiting on line for a long time (she does not). It will be interesting, but I think I am going to stick to my guns until she is so frustrated that she gives in, lol. We are both very stubborn.
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Thanks for the comments from my last post. I am wondering how dramatically, if at all, people changed their diets after their diagnosis. There is so much info about diet and cancer, but some of it differs. Any input?
Dx July 2014 Stage 2B Invasive Ductal Carcinoma (8.4 cm but nodes clean on US) on the left
Cycle One 8/8 Taxotere, Herceptin, and Perjeta
Cycle Two 8/29 Taxotere, Carboplatin, Herceptin, and Perjeta
4 more cycles to go and then surgery for Bil Mastectomy and Reconstruction on 12/17
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fluff, we have very similar mothers. but then, i do think i inherited some of her stubborness, and sometimes i think it serves me well. other times i feel sorry for people who must deal with me- i am working on it. that bad brother! WTF!! i know people that are using really have no idea of the harm they are causing, and then the things the do do make them ashamed, and then they have to use more- it really is an awful downward spiraling circle, i hope he finds the help he needs some day. its so awesome that your onc's wife is doing that for his patients, how nice of her to think of that.
but what is HLA positive?
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Momma - fluff is correct - I am in the GP2 arm of the vaccine trial. We are sorted in this trial by tissue typing. If you have any questions, ask away.
kathec - HLA is tissue typing just like is done for organ transplants. Half the population is HLA A2 pos and half neg, the A2 pos people get the GP2 peptide vaccine, the A2 neg people get the AE37 vaccine.
fluff - sorry about your mom and the fall - being stubborn is a mixed bag - sometimes it serves us well, other times not so much! I think your approach sounds like a good one.
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Chrissy.. I changed very much. Nuts fruits green smoothie. Organic. I feel very good overall. And I consistently get the comment that I look terrific!
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I had been hearing some good stuff about the AE37 trials but this is the first time I heard about GP2. The link I posted showed some real positive news but the number of participants was pretty low. They said all that received the GP2 after Herception were recurrence free. I'm going to cross my fingers that it's something that will be available end of summer next year. I think I understand the general concept. It uses my own immune system to fight the Her2/neu cells that are attacking me. Is that right?
I'm at my second weekly Taxol treatment. Last week I received Taxol and loading doses of Herceptin and Perjeta. I'll be receiving the last two every 3 weeks. The only side effect I had were 2 nose bleeds. I'm attributing that to the Herceptin and no nose hairs. Otherwise I felt great. Thursday and Friday I had to put all the baseboard back up on main floor after replacing flooring, putting up cabinet doors in kitchen after refinishing them, painted the living room/up stairs/hall and did 5 loads of laundry. I never expected to feel so good. I'm hoping it continues to last.
I added Perjeta to my treatments even though I'm doing adjuvant therapy. MO said most insurance companies aren't putting up much of a fight about it. I wasn't sure but my MO said the info in the neoadjuvant studies showed good results. There is a fine line we have to walk with under and over treating. I just want to be around to watch my kids grow up and grow old with my wonderful hubby!
Welcome to all the newbies (if I didn't say it b4)!! I'm sorry to see new ones being added but this is a great place to be.
I hope everyone enjoyed their summer. Looking forward to the cooler weather. I LOVE the fall!! Now comes the snow!!
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