TRIPLE POSITIVE GROUP
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J92 also remember those stats are either old, don't consider the 10 year out stats with Herceptin since Heceptin has only been used as standard care for early stage since 2006. Also those stats include all people diagnosed…
1. those who do all the treatment
2. those who do some of the treatment
3. those who don't do any.Your mom's stats are much higher than what you read even on the American Cancer Society's site since she is doing all the treatment. (I asked and they said those stats included everyone) Ask her onc for that information.
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J92, I just finished radiation in April and my collar bone and pretty much everything in that area hurt. My skin was as red as a fire truck and blistered along my incision line. It hurt soooo bad! Silvadene cream and dermaplast spray and lots of pain pills got me though it. The week after I was done was the worst actually, that's when everything started to blister. It sucks, but as long as she takes care of the burns it will heal quickly. I still seem to have a perma-tan in that area, but everything is healed up and I feel so much better. It sucks, but it will be over soon and she will be healed up in no time!
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Thank you so much Camillegal and Ashla. I can't even imagine what it's like to be the patient but being the caregiver is a lot to take on and it's been very overwhelming. My mom doesn't expect it from me or force me to come to appointments and stuff, I do it because I want to and I don't have the heart to make her go alone because I can't imagine how scary it must be. We come from a very small family. My grandparents don't speak English very well and I have a younger brother. My parents aren't together (however my dad has been an amazing support for my mom), so basically I'm the only one who goes to appointments with her...I haven't missed one since the day of her diagnosis. As scary and overwhelming as its been I am trying to put my big girl pants on to be there for my mom, which I have been doing but it takes a lot of balls...lol....balls I never thought I could have. I'm also in the dental profession so I understand a lot of the medical terms they use and I usually am able to remember and explain things to my mom more since sometimes she forgets what they say. Anyhow I am not totally neglecting myself but I am definitely putting my mom first and I wouldn't have it any other way because I will do anything to make sure she is okay. I think I am feeling this way because its been non stop since the day of diagnosis, everything happened so quick and now that treatment is close to an end (besides herceptin) I think it's hitting me.
Iago, thank you. Geeze they should really update those statistics since there is such a wide range! Those statistics they have really suck!
Bethcon1, thank you so much for sharing your personal experience. So was your skin raw and the bone itself felt tender like a bruise aswell? That's what my mom is feeling. For her skin she's been applying lots of aloe and moisturizers and doing saline soaks, I know the skin will heal its just the bone tenderness in that area that freaks me out
Also on Tuesday we have an appointment with the oncologist and I am starting to get so anxious. Is it normal to be extremely nervous because of onc appointments especially at the beginning of the end of treatment ?
You ladies are all so amazing, thanks so much for being so positive and giving me hope. It really means a lot. This site has been a huge help for me.
Jessica0 -
Jessica..
I had immigrant parents as well so I understand your role very well .
Being cut loose from our medical team is scary for the vast majority if us. This winter was the first time I had gone more than 2 weeks without seeing a doctor since dx.
It is very normal . You will learn to deal with it and so will your mom . I'm still working on it. They are only a phone call away.0 -
Cypher, i've decided today that I have fulminant liver failure because I got a nose bleed yesterday
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Oh, on rads, avoid the silver cream until done. My RO says it intensifies the radiation due to the metal atoms. He (and his nurses) told me that is one giant mistake that patients make and that's why they keep asking what we are using during tx.
J92, welcome and I agree, you are the amazing one. Take a deep breath and take Lago's advice about not using google. Use this site for information. Herceptin is miraculous!
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Good Morning all---We;; PBrain I think of a nose bleed as more of a stroke thing for me or I'm going to need at least 3 blood transfusians, so I guess we still have our issues to deal with. U know when I was going to HS we had health class and ne of the quesrions on a test was how mublood is lost during a period00Of course my answer was at least a gallon , maybe more cuz that how it seemed to me--so drama has always been part of my life --oh I failed the test but she did write I had a beautiful handwriting (?Catholic school)
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PBrain - stop making me laugh. I just had my gall bladder out and you're killing me.
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Pbrain, stop with the Dr. Google! You're scaring ME! LOL
JESSICA. YOU TOO! Lago is right, Dr Google is wonderful, if you can filter out the good from the bad sites. It is amazing to me how much the picture for triple positives has changed since Herceptin. So if you see studies done before 2006, you can take them with a grain of salt. I didn't have radiation, but my DMIL did, over 20 years ago. She just died in Dec, at the age of 90+. She had no recurrence. So, signs are great for your mom. Hang in there, come here to vent, or to get info. I am sure more people that had radar will check in to answer your questions. One thing that helped her. Was a shirt that buttoned in front so she didn't have to put on anything over her head.. Much love.0 -
Thank you Pbrain and Moonflwr912...it's so great to hear all of these positive things...the internet can be very scary. Moonflwr912 I'm very sorry about your DMIL's passing. That's so wonderful that she lived the rest of her life with no BC recurrence! Did she undergo chemotherapy?
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J92, stick with us. We'll take you under our wings. This site and thread has helped me so very much. I've asked the stupidest questions and have vented all my fears.
So new question--does anyone know what percentage of women with breast cancer who undergo chemo? Is it a small number? I find some of the survivors I'm talking to at work are surprised that I had chemo, plus I was looking at a large study on breast cancer patients and bone meds a week ago, and only ~20% had chemo. I know my boss told me she cried when she learned she needed chemo. I just thought it was a given at my diagnosis, even before the receptor results had come in.
vballmom, it is safe to read this. I'm being serious.
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Thank you. You ladies are so great
... So my mom's collar bone is blistering...we saw the radiation oncologist today...he's awesome...he reassured us again that the collarbone pain is due to radiation. So I am feeling a little better. I just wish I can find a little bit more information on that! Oh well. She's in the best hands and she's being treated at one of the best cancer hospitals in the world. So I'm confident in her doctors, we are so happy with them. I'm just nervous for this coming Tuesday when we meet with the Medical Oncologist. She is amazing, so positive and encouraging but for some reason as much as I love her I get so nervous and paranoid at those appointments. All of the worst case (sometimes unrealistic) scenarios run through my head. I almost find that I am more nervous now than I was when my mom was doing chemo. Does that make any sense? lol0 -
Hi, ladies-
Well, I found the amazing breastcancer.org website when I was diagnosed exactly 1 month and 1 day ago from today. I honestly do not know what I would have done without this support forum; it has been a Godsend for me. Even though this officially marks my first post, I have been on the site navigating around multiple times a day, everyday since May 24, 2013, the day the changed my life forever. I find myself Triple Positive. I had my bi-lateral mastectomy one week ago and will be going in for a re-excision to get cleaner margins tomorrow morning at 9:00 AM.
As my username states, I am 32 years old. I am a middle school English teacher, wife (been married 8 years to a wonderful man) and mom to two little girls , ages 6 and 4. If cancer had to come into my life, I wish it would have come when I was 42, 52, or 62, when my girls were older, but I plan to treat this cancer aggressively and beat the crap out of this disease.
I am looking forward to connecting with others who find themselves on this incredible journey; I will be here every step of the way.0 -
DXat32,
I hope everything goes well for you tomorrow. I will be praying for you and your family. ((Hugs))0 -
Thank you, J92! You seem to be a super daughter; your mom is lucky to have all of your support;) My mom is 70 yrs old and has pretty much been here at our house helping out ever since I was diagnosed. There is no love like a mother daughter love, that is for sure!
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Thank you, you're sweet. You are 100% right, there definitely is no love like a mother daughter love. I would say one of the best things that has come out of this is that before cancer I never really thought my mom and I could get any closer, since we have always been so close, however since her diagnosis we have developed a really special bond that's hard to explain, but it's beautiful. I am sure you will notice that with your own mom, if you haven't already
It's wonderful that your mom has been helping you so much. My grandmother has also been at our house helping out every day since my mom's diagnosis. She has been a life saver. I can't imagine how difficult this must be for you with two small children, but you WILL beat the crap out of this disease, especially with the love and support of your family. 0 -
Oh DX sorry u'r here and especially at u'r age--This all sucks==but this is a wonderful site for info all the ladies on here are very knowledgable so don't use google use this.
PBrain 28% don't get chemo. Sounds good right.
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DX - hope your surgery today goes well! I'm a few years older than you, and have boys - but otherwise we're similar! So sorry you're going through this, but since you are I'm glad you're here!
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Welcome J92 (and your mom) and DX@32!. I am so sorry that you have to be here at your young ages. This is a wonderful group, very supportive and encouraging. So ask your questions, vent and share your triumphs, we're here for you.
Pbrain - Not sure about the percentages, but I did not have chemo the first time around (stage 0) and did this time (Stage 2b), so I am guessing it has to do with your stage and the type of cancer it is. I am sure someone with more knowledge will come along and clarify it.
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J92 & dx@32 , Marlene , to all of you younger girls and in fact to everyone who sadly has to be here.
I believe there is an upside to this terrible ordeal . There are always lessons to be learned and the worst experiences teach us the most valuable ones. I spent my entire life living as if there was no end in sight...living it mostly in reaction people and events . I can't recall the last time I thought about what I had really wanted out of my life until I started on this journey. I wasted so much time and effort on people and things that were not worth the effort.
I wish that I had realized this sooner. I wish that I had lived my life as if each day were my last. Seize the day and as Norah Ephron said " wear the tiara" .... Every day if you like.0 -
Progress.....
"
NCI Director Harold Varmus
WIKIMEDIA, NCI
The National Cancer Institute (NCI) this week announced plans for a new initiative to find a way to target a group of notorious cancer-driving proteins, known as RAS proteins, that have hitherto proven impossible to inhibit with drugs, reported ScienceInsider.
With $10 million redirected from other projects at the NCI’s National Laboratory for Cancer Research (NLCR) in Frederick, Maryland, the RAS project—which will be carried out at a dedicated lab on the same site, but will also work with outside researchers—has a clear goal: “Finally after 30 years of knowing how important RAS is in cancer, [the aim is] to actually produce some outcomes that are helpful to patients,” said NCI Director Harold Varmus at a joint meeting of the National Cancer Advisory Board and the NCI’s Board of Scientific Advisors.
A family of proteins found in all human cells, RAS proteins play a key role in signaling pathways that control cell growth, differentiation, and survival. Mutated RAS proteins that are permanently activated are found in a third of all cancers, and in 95 percent of pancreatic tumors. But scientists are yet to identify an obvious binding region on RAS proteins that could be targeted with a drug to inhibit their activity."
http://www.the-scientist.com/?articles.view/articleNo/36183/title/NCI-Plans-Wide-Collaboration/0 -
More progress...
http://healthland.time.com/2013/06/26/no-more-chemo-doctors-say-its-not-so-far-fetched/
There’s a revolution occurring in cancer treatment, and it could mean the end of chemotherapy.
When it comes to taming tumors, the strategy has always been fairly straightforward. Remove the offending and abnormal growth by any means, in the most effective way possible. And the standard treatments used today reflect this single-minded approach — surgery physically cuts out malignant lesions, chemotherapy agents dissolve them from within, and radiation seeks and destroys abnormally dividing cells.
There is no denying that such methods work; deaths from cancer have dropped by around 20% in the U.S. over the past two decades. But as effective as they are, these interventions can be just as brutal on the patient as they are on a tumor. So researchers were especially excited by a pair of studies published in the New England Journal of Medicine last week that showed a new type of anticancer drug, which works in an entirely different way from chemotherapy, helped leukemia patients tally up to an 83% survival rate after being treated for two years."http://healthland.time.com/2013/06/26/no-more-chemo-doctors-say-its-not-so-far-fetched/0 -
WOW Ashla wonderful.
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Fantastic news Ashla! I have a friend who had a double mastectomy (with her second recurrence of BC) and did not have chemo. She didn't feel her body could deal with it. She's close to 3 years now since surgery.
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Actually I know a few women that didn't have it cuz they chose not to and I can understand why and they are doing OK, better than most.
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Not to burst your bubble, ladies, but my mom was one who had just a bmx, was told she didn't need chemo or rads. And died of metatastic cancer 7 years later. So I take this info under advisement, and with a box of salt. And that is why if chemo wasn't recommended for me, I would have fought to have it.
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Breast cancer trials....
https://www.breastcancertrials.org/bct_nation/home.seam0 -
Thanks for all the replies. I love reading everyone's posts. My feet and hands are still tingling, but thankfully I only have one more taxotere. It is next Wed. Then 2 Cytoxan and I'm done with chemo ! Can't wait. Herceptin till next June and hopefully nothing else through this hateful port after that.
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Moon I never disagreed about chemo for myself I was OK let's start---so I'm with u but I can honestly say I don't understand all or any of any reasons for decisions for the most part. I'm not saying I'm right at alk- but I figure if a dr. say do it then do it. It's still all cloudy whe get it again, or never again who didn;t get chemo and they do well and who did and not so well. So that's why I just go along with their decisions. Figuring they went to schoo, I didn't
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I'm just trying this ...maybe someone else can weigh in on the subject. Seems all of us could benefit.
"Mindfulness meditation is having a moment in the West, and with it some compelling reasons to understand and try it"
http://www.theatlantic.com/health/archive/2013/06/how-meditation-works/277275/0
