TRIPLE POSITIVE GROUP
Comments
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This is such a good page that I've bookmarked it because I'm facing a similar decision in the future.
Once again, thanks to all of you for being so helpful and thanks, Bren58, for asking the question. Wishing you the best whatever you decide to do in the future.
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Hi everyone! I posted this in the chemotherapy section but was told that posting it here too might help get me some advice. Basically, I'm wondering what to expect after my first round of TCH.
My chemo will start on 2/26 and I very much want to attend a close friend's wedding on 3/9. Getting there involves a short plane ride and an overnight stay in a hotel with my boyfriend. I should mention I'm 25 and in excellent health aside from the cancer, so I usually have lots of energy and no problem partying and staying up late. (I imagine chemo will change this a bit.)
I need to decide soon if I want to buy plane tickets and book a hotel room, but I have no idea how I'm going to feel after chemotherapy. Do you think I'll feel well enough after 10 days to board a plane and attend the wedding and have an okay time? I asked my MO, waiting for a response. Any input from those who have been there before would be appreciated, thanks!
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Hi there - and welcome, runner 1987.
Have you cleared it with your oncologist yet?
I would have been fine at that point* but everyone is so different. Even when I'm feeling okay I'm not quite trusting by body between cycles but then again - I'm twice as old as you are (and then some, i.e. 54 to your 25).
I would take anti-nausea meds just in case and I would definitely clear it with your oncologist.
*note, I can only say that re: treatments one and two (I haven't had treatments three through six yet).
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Runner 10 after my 1st chemo I was fine but everyone is different. Actually I was working out the day after chemo. It's really hard to say. I never got nausea either but so many people do. Are you getting the nuelasta shot? If not 10 days after chemo is when your white counts will be their lowest. You are more susceptible to catching things like colds etc. Your oncologist should be able to give you the best advice. S/he has seen so many patients go through this.
But I did go to my niece's Bat Mitvah 11 days after my 4th tx, wig and all. 4th picture from the right is me at the affair: linky
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I like your hair short, lago, but I also like the wig you wore to the Bat Mitzvah.
I have a wig but it drives me batsh*t crazy when I wear it. I'm most comfortable in ski caps.
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The only time I wore my wig was that weekend. It was too big and hot. Also way too shiny. Lookes like doll hair… and I used to be a toy designer so that bothered me. I wore long scarves
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Welcome runner1987 and so sorry we had to meet this way.
As others have said, each of us reacts to chemo differently and you should check with your MO . I was very fortunate in that I never had really debillitating side effects during chemo. Never had nausea or diarrhea which would have made travel more difficult. In addition to chemo, you will be given steroids likely prior to , during and after chemo to prevent nausea and other Se's. I found that the first 2 days after chemo I was on a steroid high ..unable to sleep and hyper. On the third day I developed serious problems with constipation which I'd never had before or since. This became manageable in subsequent chemos with the addition of stool softeners with my pre chemo meds. Took a week to resolve the constipation issues and then I would be on the upswing for the rest of the month. Sleeplessness and fatigue made it a bit more difficult all around toward the end of treatments.
In short, if you reacted like I did...the wedding trip would definitely have been doable. Many others, however, had completely different experiences.0 -
Thanks TonLee for the information. I do not have a problem asking the hard questions of the surgeion. I would rather know up front than after the fact. I know that they don't always like you tell you about those times that they made mistakes, but hopefully I can get honest answers. One appt is tomorrow and the other one is next Tuesday. I will let you know what I find out.
Welcome ruunner1987. I would agree with the other ladies. At 10 days I was feeling much better, if not 100%. If your MO says it's ok, then I would go. Just make sure you take your meds with you.
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Runner,
I went to a wedding after tx 5, about 7 days after....partied/danced all night long...the worst problem I had was my head sweat under my wig! lol
Have fun
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Hey Runner, I just had my first round of TCH on Feb 1 and at 10 days, I was feeling pretty much back to normal and would have been fine with the travel/activity you're considering. Just make sure you allow yourself time to rest if necessary.....and get your doc's OK. At 10 days, you should still have your hair too!
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Dear runner1987,
FWIW, I think you will be fine to attend your friend's wedding. Why do I say so?
(1) You are young and in good shape;
(2) I was double your age, yet in good shape, and my first 3 of 6 chemo rounds were very doable. In fact, after my first one, I only had two days, Days 3 and 4, where I felt a bit under the weather, but for all the other days I worked out and felt quite grand. I did take my anti-nausea meds, as prescribed, and I drank 2-3 litres of water every day, basically, since I have begun this whole treatment plan (began chemo on July 28, '12, and finished on Nov., '09, '12). Radiation was for one month, Dec., 24-Jan., 24, 2013, and I found it to be a piece of cake compared with chemo. I never put soap on my chest area for the 4 weeks, opted for tri-weekly baths, in lieu of showers, which might dry out your skin, and put organic argan oil on the radiated area 2-3 times per day. My skin held up beautifully.
(3) There are 11 days in between your first chemo round and your friend's wedding, so I think you should be fine for that reason as well. You will probably find that as you have more chemo sessions under your belt, your body, being worn down from the chemo cocktails, anti-meds, steroids (if you have to take them), etc., does certainly feel more fatigued than,say, after Chemo #1. Are you going to be injected with Neulasta (white cell promoter drug)? I took it 24 hours after each chemo session. It caused bothersome bone pain 3-4 days after I received the injection, but painkillers can be prescribed. Ask you MO about what you can take/be prescribed, if you are taking Neulasta.
The chemo sessions are doable, not so pleasant, but they are doable. Good luck to you, and as other ladies recommended, please talk with you MO about everything, ask questions and focus on staying healthy and in a positive frame of mind.
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Hey ladies, question about herceptin: I had treatment on Monday and woke up last night with what I think was a herceptin hot flash - drenched in sweat. It was my last chemo (FEC), too. My question is this - the hot flashes don't happen every treatment. It's more intermittent. They happened more often when I was on weekly Taxol and Herceptin, though. Is this something I need to ask my MO? Is that normal? Is anything about cancer normal??
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Foreverchanged,
imo hot flashes become a recurrent part of our lives after chemo......I never noticed a link to herceptin specifically.0 -
Foreverchanged72612 My hot flashes, although pretty minor happened between 2 and 5am during chemo. Once chemo ended they were barely noticeable even on Anastrozole and just doing Herceptin. I'm finishing up my 2nd year of Anastrozole and I find I don't have any. My guess is from the chemo because I don't believe Herceptin damages the ovaries, chemo does.
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Welcome Runner. I'm going to say what the others are saying. I got diarrhea days 5 -10 usually. But began to feel much better after that. (That is a normal SE, but not the usual one, usually its constipation) I would be concerned about your nadir. If you don't get the nuelasta shot or something similar. You really have to be careful about crowds, raw foods, ie, salads , seafood, etc. If you get the shot, a lot of people have taken Clariton, it seems to help with the pain from the shot. Ask your MO if its ok. Good luck, and enjoy the wedding.
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My onc had me on Cipro during every nadir period, just to be safe and ward off catching anything bacterial. For the most part it worked beautifully, but did come down with 2 throat infections even though. Amoxicillan cleared that up quickly though. Maybe something like this would be an option for you seeing you'd be around a lot of people? Best of luck with your upcoming chemo, and have a smashing time at your friend's wedding!
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LeeA - chiming in late here...lol. Tim Horton's coffee is SO absolutely delicious! A large double double is my treat of choice when I go to town.
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Shasha - I'm doing high dose IV vitamin C along with IV nutrient therapy, which consists of vit B, magnesium, calcium, vit K and some other stuff I cant recall right now. My onc approved it as long as I do it 2 days before or after treatment. I'm seeing a board certified naturopathic oncologist who administers it. He keeps in touch with my onc. I've read that high dose vit C hasn't been proven either way to benefit nor interfere with chemo treatment, which is what my onc told me. The IV nutrients bypass the digestive system which ensures I'm getting my vitamins. I've had a poor digestive system in the past, etc. High dose vit C is expensive... I have had 2 treatments with very little SE and in a cpl weeks I will most likely have to 86 the vit c but will keep going with the IV nutrient therapy. Not sure what the right thing is to do considering there are MO out there that do not agree with high dose vit c... For me, considering all that I've read (medical studies vs medical articles), I felt comfortable doing it.
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Im new to sute and just dx with triple positive. I had an mri and pet scan today. My mass is 3inches wide deep and long. Im overwhelmed with all the information im reading. Onc wants to do chemo first then surgery. Im only 43 with 3 kids, ages 14 yrs., 12 yrs., and 16 months. My momjust passed pf triple neg br ca with mets. What am i looking at here? Im no where near ready to go. I need a prognosis! How long am i looking at?
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Mommyof03 This is a great group. We'll get your through this.
I assume you just had a biopsy. I too had a tumor about your size (6.5cm total, 5.5cm IDC with 1cm DCIS). I didn't do chemo first… and I actually asked. I think if I had met with the onc before surgery maybe I would. The nice thing about doing chemo first is they can see if it's working. If not they can change treatment.
So what is your clinical stage? Did they tell you that yet? Usually they stage people after surgery but those who get chemo get a clinical stage meaning the assume what they see in the scans is correct. What that means is things are not always 100% accurate in scans. In my case the scans said my tumor was 7cm. Ended up only 6.5cm and only part of it was invasive.
Also know that you have many more treatment options than your mom did with her triple negative. You not only have chemo but also targeted therapy and hormone therapy. Herceptin is targeted theropy for HER2+ but there have been a few more that have been either approved or in final phases of trials. Yeah you have lots of good options.
Depending on what chemo you get it could be 3.5 months or longer. You probably will get Herceptin and that's usually a year every 3 weeks. Herceptin is NOT chemo. For most of us the side effects are almost non existent.
Keep us posted with any info. The more you tell us the more we can give you guidence on what to ask your doctors.
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Hey ladies! I'm still here and still waiting! You were right lago, about my being on menustral cycle and having the breast MRI! So, I have to wait until the 28th of this month, with surgery the following week on Monday or Thursday! It's really working havoc on my nerves!!! On the upside my daughter and I have been able to talk about it(she's only 12). I think she'll be a big help to me! Thanks again for the advise you all give to one another, it's soooo comforting
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Hey ladies! I'm still here and still waiting! You were right lago, about my being on menustral cycle and having the breast MRI! So, I have to wait until the 28th of this month, with surgery the following week on Monday or Thursday! It's really working havoc on my nerves!!! On the upside my daughter and I have been able to talk about it(she's only 12). I think she'll be a big help to me! Thanks again for the advise you all give to one another, it's soooo comforting
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Welcome mommyof03. I am so sad that you have join us, but there are some wonderful ladies on this board that have been through this before us and have hung around to help the newly diagnosed. They are a wealth of information, encourgement and wisdom.
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Hi mommyof3:... We 're here to help you through this difficult time. It must be so much more difficult for you because of what you went through with your mother.However, Triple postive BC as others have said is very different from triple negative and with the introduction of herceptin to the arsenal in the past ten years the prognosis for us triple positives has gone from one of the worst to one of the best. Many of the most recent discoveries and active trials are piggybacking on herceptin as a delivery system for even more targetted treatments.
I too had chemo first and then a lumpectomy, rads, more herceptin and then hormone therapy. There are several chemo protocols that are commonly used for us and you will find many women here to guide you with each of the various options.
You will certainly face a Tough challenging year and many, many decisions along the way but you ...like us...wil get through it and these great ladies will be here to help you.
As Lago said..right now they are doing what is called staging . Soon you'll have some staging info. I'll try to give you a link.0 -
Mommyof3...staging...hope it works..
http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page20 -
welcome mommyof3 - good advice from the ladies
like ashla i also had chemo first, surgery and rads - a lot of centers like to do it this way for any tumors over a certain size. If you have any questions on neoadjuvant (chemo before surgery) please PM me
just a shout out to all my triple positive peeps - hope everyone is doing well
had my second lupron shot today...i don't know how much longer i can do these before these evil ovaries have to come out, any idea
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Thank you everyone for the warm welcome (thats sounds odd lol) and encouraging words. To answer some questions I will give you all I know. MRI of brain and PET scan done today. They gave me the cd's so of course I looked at them. Unfortunately I'm only a paramedic so although i understood the anatomy and slides i dont know what to look for. My onc wanted these tests to complete staging. He was quite confident they would find mets due the size of my mass 9cm x 8.5 x 8cm and the age of the comedal necrosis. Seems there is one suspicious lymph node under arm of effected breast. I go to see him on friday for results and plan. The luxury i have is my sis in law who is a dr. She is very helpful.
Thats all I got for now ladies. I will update when I have some definitive answers.
Thank you again and God Bless you! I'm sorry we met this way.0 -
Mommyof3...
Seems like you'll be teaching us as much as we'll be informin g you! That is usually the case in this forum. Comedal necrosis.....in all my readings did not rmember that term but I looked it up. Had no idea it was an indicator of possible mets.0 -
I know I had necrosis with associated calcification's but it wasn't called comedal on my path. Never quite understood the difference. I know it indicates more aggressive. I thought it was associated with DCIS (1cm of my tumor was DCIS) as an indicator that the cells were going to become invasive.
Mommyof03 These tumors can sometimes fool the MDs. My BS pretty much thought I would have at least micromets in my nodes although the scans showed nothing and they felt nothing. Ended up I was node negative. The stats I looked at said with a triple positive tumor as big as mine the changes of mets to the nodes was 80%! I beat the odds. Hey someone has to be in that 20% right?! Hope for the same for you.
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Welcome, Mommyof3, to the club no one wants to belong to but since you've been inducted involuntarily - you're in the right place.
Right now is a difficult time because everything is still so up in the air - i.e. surgery dates, chemo before/after surgery, rads - no rads. I found that once I got on a schedule I felt, dare I even mumble the words, more in control.
Thank goodness you have a doctor in the family.
The women on this thread will help you immeasurably. I can't imagine how I would have gone this far without them.
Best wishes to you as you start out on this so-called journey - or as Jenn from Australia prefers to refer to it: experience (I like that word for it much better than journey as well).
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