TRIPLE POSITIVE GROUP
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PBrain
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I think a lot of people in Canada and Australia seem to get chemo first. If I recall correctly,.that seems to be the norm there. six of one, half dozen of the other. Much love.
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goutlaw, if your tumor is 6.5 cm, it sounds like you are stage III. However, it might not all be invasive, so you might be an earlier stage. What do they say about cancer in your nodes? What about elsewhere in your body? I must say, your oncologist sounds like she has the worst bedside manner I've ever heard of. Why the hell would she say that to a cancer patient? Even if you had stage IV pancreatic cancer (i.e., a death sentence kind of cancer), you still shouldn't say that. You need another doctor.
Also, just to reiterate what others have said, if your statistic is 70%, focus on the 70, not the 30. And bear in mind that you are going the full 9 yards in terms of treatment and that statistic includes people who don't get adequate treatment, so your statistic is probably higher.
Most of us the women on this board had grade 3 tumors. Don't attach too much weight to that. But seriously, get another oncologist.
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Cyper had all scans done prior to chemo...whole bunch....MRI of chest wall, CT scan of brain, bone scan and MRI of abdominal area plus my echo. All negative so far. Just hoping chemo kill all the little cells that are hiding and I don't find out years later I got it again. I wish cancers of America would take my insurance but they don't...there machines do detect lil cancer cells before they are tumors which you can get treatment right away to knock it out. Yea well....called yesterday... I don't know about nodes just they saw swollen lump nodes when they did MRI. Having chemo first then surgery...then radiation and herceptin and hormone therapy...all I know. I got at least 5 masses left breast with satellite folics. But other ones are smaller...I'll have to post path report here lool
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goutlaw I think I mentioned that most HER2+ gals have grade 3 tumors… not all but most. Also remember my tumor on the MRI was 6.5cm and ended up only 5.5cm was invasive. Still large but I know I felt better about it.
Now when you use this calculator be sure to choose "therapy calculator" then change on the right to "survival curves" or one of the other charts. The "mortality curver" is a bad way to look at the same stats. Also note at the bottom right it will put a disclaimer if you put in large tumors or lots of nodes… basically we are too big for their results
cancermath.net 0 -
OK guess what though mammogram showed one where they marked it 8 cm other site same breast 7cm....just read it...
One at 11 and one at 2:00
Mammo showed0 -
Surgical path reports biospy showed one site estrogen 65-75% progesterone 10-15% and her2-3+
Other site esrogen 60-65%
Progesterone 1-2. Her2-3+0 -
Picked up MRI report one site say 2cm other site says at least 6.5 so gonna just wait and see..all I know is I can't turn back time
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I am started with American Cancer Society
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Hi all,
I'm new on here, diagnosed last week as Stage 3. I'm 36 and went to a breast specialist because I thought my dense tissue got a lot worse in a matter of 3 weeks and found out I had an 8cm tumor. Last week was hell after finding this out and waiting for test results and oncology appt, because I knew I was going to be stage 3 based on the size. I am feeling very positive after having my oncologist appt and finding out that the triple positive actually works in my favor and gives me a much better than expected prognosis. I will be starting a TCH x 6 regimen next Thursday. I just got a pet scan this morning and don't get the results until Tuesday, ugh, so I am still pretty nervous about that. Anyway, just wondering if anyone has any advice before I start my treatments...like do you recommend getting a port, taking Claritin for helping with the neulasta, where to get a nice wig, etc...
So glad I found this forum, I will definitely be spending a lot of time reading older posts.! Not sure if I am using all the right lingo, but I'm sure I will learn it all soon enough.
Any advice is greatly appreciated!
-Kelly0 -
Kelly what is TCH*6?
Why do some only get TCH? Is that as strong as AC/ TH?0 -
Hi Kellybee. Yes you are using the right lingo. My tumor was measure as 7cm on the Mammo/US. The MRI measured 6.5cm Thing is only 5.5cm was invasive and they only go by the invasive part. They don't seem to care about the DCIS part. Yes get a port. You will have a year of infusions. Much easier and won't ruin your veins. My onc wanted me to keep mine in for 2 years because she says that's when most recurrences happen. Got mine out this past fall. Yes take Claritin for Nuelasta, especially the first one. The first one is the worst. I did TCH too. My first 3 tx were pretty easy. Never had any nausea but did get Constipation and heart burn the first round. But some people get Diarrhea. Just remember you won't get all the symptoms.
goutlaw TCH x6 is 6 treatments of Taxotere, Carboplatin, Herceptin every 3 weeks followed by finishing the rest of the year with Herceptin every 3 weeks. AC/TH is slightly better but not by much. Both have their own special risks/SE. Both are typical treatments for us HER2+ gals.
My onc prefers TCH but not because it's more effective. Many on the east coast, Including top places like Dana Farber prefer AC/TH. There is more than one way to treat cancer. Don't worry, we all are getting or got the good stuff with either of these cocktails. This is the strong stuff!
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Kelly, I would kiss the ground my port walked on, if it walked. One of the best decisions I've ever made. Use the lidocaine cream an hour before each infusion and you won't even feel the needle. I'm actually thinking of keeping my port for life!
My advice on chemo, ask questions, talk about any and every side effect no matter how weird (these drugs are systemic), keep your nurses up to date on what is happening to you because things do happen and they can help you get through it. Keep up on your anti-nausea drugs even if you feel fine. Take them anyway, regularly, without fail. I didn't because I don't like taking pills, and I ended up in the hospital (get used to taking pills, it ends when you are done). Get a ton of immodium or senecote (you'll go one way or the other) and buy stock in Preparation H. Be sure to take lots of prilosec, even when you don't think you need it. TCH gave me horrible heart burn.
Be prepared for food to taste crappy, but don't despair. You'll find things that do taste good. Peanut butter, ice cream and diet pepsi tasted delicious to me. So keep scouting around. Give in to cravings. I was totally craving gingerbread and molasses cookies when I got out of the hospital. One of my buddies baked me both and I just chowed and chowed. A few months later, one of the chemo nurses was giving me some advice on foods that are high in potassium because mine was way below normal all the time. She said to me "one of the best sources of potassium ever is treacle. I see it on the top of lists all the time, but I don't know what it is." The other nurse helping with my chemo said it was molasses. Bingo! So cravings are definitely something to listen to.
Try your best to keep your sense of humor and remember they aren't doing this to you, they are doing this for you. And before you know it, it will be over. If you get radiation, I found that to be nothing--just a walk in the park.
And come on here because chances are anything you go through one of us has been through. It so helps to have a team of supporters!
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Oh, and like I said about weird side effects--chemo cured my chronic dry eye so I don't use Restasis anymore. It also improved my vision. I went to the eye doctor last month for my annual check up and she was so puzzled. She said "your vision is vastly improved but I don't know why..." I said "chemo". She said "no way!". I said "way".
And no shredding cuticles like I have every Winter, no chin hairs and I had amazing skin during chemo. I can't say the same now that I'm on the aromatase inhibitor. I'm breaking out like a teenager...
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Well if I got stronger stuff I gotta get 8 treatments.
Does anyone know how you get her2 or why ppl get it? I'm curious. Imean I worked night shift, smoked,had 3 pregnancies that ain't here, had bad diet, hardly excersice and overweight by 75 lbs which I can't seem to lose. I had depo. Shot once, birth control a while back when I was teenager.
Now I joined gym, watch diet more, quit smoking, don't work, wish I could lose weight..
I only take synthroids for hypothyroidism
I just don't want it to come back...The only way it comes back is if chemo or radiation don't kill it all and cells are hiding.
I just think its lifestyle... This is awful.0 -
Pbrain funny but peanut butter and soda tasted bitter to me on chemo.
goutlaw I wasn't overweight, didn't work at night, had no kids. quit smoking almost 9 years ago and not a heavy smoker and non always a smoker, exercised, thin, had no health issues. If they know what caused it they maybe they could figure out how to stop it.
But the best thing you can do is maintain a healthy weight and exercise everyday: linky < note this onc worked with Dr. Slamon on the trails for Herceptin back in the 90's and specializes in HER2+
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Welcome Kelly! IMO, DEFINITELY get a port. I don't think you'll regret it. I had no SEs from the Neulasta and needed nothing for it. Accessing my port never hurt and I didn't need any numbing...I think I was one of the lucky ones.
Hair. Go to the Cold Caps hair blog....you don't have to lose your hair. I didn't use the expensive caps and did lose a lot of hair but never went bald and never needed a scarf or caps. It is a lot of work and some aren't willing to put the time and effort into it but I'm glad I did it.
We are all so different.
You've found a great place here and welcome!
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Wow, thanks for all the info!
Lago & Pbrain- I am pretty sure i will get the port. how exactly is it put in...does it require a surgery or is it a simple procedure?
arleneA- that is great about the cold caps and not losing your hair, but I don't think i want anything else to think about. I'm going to buy myself a wig and some scarves this weekend. Thanks for the port info. I hope I'm as lucky as you with the neulasta!0 -
Welcome Miss Kelly....you are in such good hsnds with this board...all of these woman are totally amazing and full of info.
I am one of the unlucky ones with chemo (TCH) I have experienced all of the common side effects to extreme....but still keep a positive attitude and try to laugh a lot...it really does help!
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PS....get the port Kelly....
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Dana, it is so good to see you drag yourself out of the chemo fog. I so remember that. How many more to go?
Kelly, ports are put in surgically. They place it and then have to go up and hook it to a major vein, usually up in the clavical. I found it kind of creepy at first, but now I love it. My breast surgeon did a fantastic job, and it required very little healing and no pain. Some women on the boards have had troubles though. I know Bren had a collasped lung, but she is still with us. And I have had a bit of issues with going through security at the airport, but they give you a card to carry. Check out American Cancer's Society TLC website for wigs. I got a super cute one in 2 colors. A good piece of advice I got was don't buy real hair. You won't be wearing it that long, and the new fibers look pretty convincing. I found it semi-uncomfortable, but that is probably because I don't like anything on my head including hats and headbands. Someone on here might have some advice on comfort.
Gout, read this and relax about the neo-adjuvant chemo. And the first thing my breast surgeon told me the day after I was diagnosed is that I did not cause this so stop searching :-) Like Lago, no kids for me, I'm about 40 lbs overweight, always athletic, I am a total wino, used to smoke, don't eat much meat, never did drugs, sleep in on the weekends, like to sit in the sun....who knows.
http://breakthroughs.cityofhope.org/molecular-subtyping-chemotherapy/5946/
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Hi Miss P......hopefully one more chemo.only ...then radiation starts...I think I am more freaked out about the radiation.
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OK anyone not smoke and got this lol
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Thxs pbrain for article...made me feel better...I hope for complete response
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Goutlaw-- I quit smoking over 25 yrs ago.My MO said that it was a non factor since I quit so long ago. I never drank at all,was never overweight,had no childred and no one in my family had breast cancer,but I got it... I don't believe that life style causes BC.. Stop beating yourself up. You will never know why you got it,none of us do.. I asked my surgeon how did it get this? She said how does a six year child get cancer? No one knows...
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I am a firm believer it is in our foods. But who knows I asked my doctor as well and she said you just never know.
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Kellybee, I got the power port for no reason, because it’s really large and obtrusive but they never do scans or anything through it, only chemo. If I had realized this, I would have asked for a smaller one.
Chemo – yes, tons of water, tons of protein, ice your finger and toe nails. DO try to exercise throughout – it’s a bit tough at first but just take it slow. You will feel kind of leaden.
Pbrain- yes me too, I am breaking out constantly, its annoying. And my nails are really crappy – never cared about them but they are so frail! I too had great skin all through chemo, and also mosquitos didn’t like me, I had no allergy problems, and I didn’t have any headaches for about 6 months. Don’t’ get me wrong – being on chemo sucks, but it’s not as bad as you probably think. For most of us. Some people inexplicably have a really hard time of it – everyone’s body reacts to these things differently.
I also kept my hair – I did the penguin cold caps. It makes it a lot easier to stay active, stay social, and not look at yourself in the mirror and feel like you’re looking at a cancer patient.
I didn’t have the neulesta shot – they took my blood in between and my counts didn’t drop so low that they wouldn’t recover. I would encourage you to not take it unless you really need to. (Which you may.)
Goutlaw, very few of the women on this board ever smoked. I have been height-weight proportional my whole life, never smoked, not a big drinker, exercised regularly, and had a pretty healthy diet, and still I’m here. Still, statistically all that stuff increases your odds…
ChickaD, glad the end is in sight for you. I HATED rads -- the scheduling drove me nuts (it was all about cancer all the time) and also for some reason it gave me a temporary mood disorder --I became clinically depressed basically the day I started and stayed that way until I was onto the boosts, Then I felt like myself again. But that's unusual. Most people breeze through it.
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KellyBee my port was installed by a surgeon that seems to do only ports although is also listed as doing:
- Cancer surgery, breast
- Hernia repair
- Hernia repair, plug and patch
- Sentinel lymph node biopsy
- Splenectomy
- Vascular access devices for chemotherapy
I had no problems with my port. It was small juvenile one because I guess I'm so small. Anyway I do hear that new ports are much thinner now and don't stick out as much. Although mine was small I'm so thin on top that it did stick out but I didn't care. I just ignored it.
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Ive "never" smoked, have no history of breast cancer on either side of my family, dont drink and yet I find myself here too. Ive never been an avid exerciser with the exception of cleaning house and working. I need to work on that. I went through surgery and chemo, Dr says no rads! I did well thru both! Now doing herceptin only and watery nose and eyes are my biggest complaint and starting to have some indigestion. Did anyone experience back spasms during and after chemo? Is this something I should call my Onco about?
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I have a power port and am thankful for it. I have very small veins. Tough stick, so my port is a God send for me. They do my blood draws from my port also.
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