TRIPLE POSITIVE GROUP
Comments
-
Hi ladies,
Thank you for your replies. I am very grateful for this forum.
HapB, you are a true fighter, one can only imagine how much strength it takes to go through such journey. So far I do not know how to deal with this dx except that I have no other choice than go with the flow. In 10 days I have my first appointment with oncologist but I have already been told that there will be chemo, Herceptin, radiation and hormonal therapy afterwards.
AliceAgnes, I will read the thread you have recommended. Of what I have red so far and even on this forum the further life includes a lot of worry and fear. This comes automatically, the joy and new normal one has to find on her own. I wonder how I will be able to do it, I do not have a drop of happiness left in my body. I have been told that mindfullness helps but at the moment I cannot concentrate at all. I am just living through very dull days, feeling like I am sitting in a glass jar watching people going on with their lives, making plans, worring about petty things and I know they find out that I have cancer they will just think oh, how awful, but no one would understand what I am going through. No one except for us and our loved ones.
Sincerely,
Cherr
0 -
Cherry,
Welcome to an unwanted journey. Sorry life finds you here. When you have time you should add the specifics of your cancer to your profile. Make sure you change the setting so we can see it.
I totally understand how you feel about no one understanding, that is what's nice about this site. We do. I have a lot of friends who tell me that this is "just a small blimp in my life" and not to worry. The first time I was told that I about slapped the person. After that I started telling them " your right, losing my hair, my taste, and my boobs is just a small blimp." Then i say "so is losing a friend" and just smile. Lol.
You find out who your real friends are very fast.
Try to stay positive, I know it is hard and there are days I sit in my bedroom and cry but remember "WE ARE WOMEN THAT WILL KICK ASS" we can do this together. Feel free to ask questions so you know what is coming at you. I found the more I knew the better i handled things. I don't sugar coat things either.
Hope today finds you feeling better
0 -
Hi Shelabela,
Exactly to the point, people are telling you: this is not so bad, it is so treatble, you will be fine. This is what a professor at my clinic told me on my first meeting when I came to her right after the ultrasound. I just had to trust them, she told me, but I said that I did not because their other clinic missed this tumor back in January. The professor did not like it at all, I could see that she wanted just to get rid of me. But my husband became extenssively positive, he does not want to read about bc online or listen to me, he just keeps saying that they told us you will be fine. The same with my two best friends, even though one of them has a mother who is twice bc survivor, I guess they just do not realize this feeling that you are trapped in your body and you do not have any control. And even If I previously thought it could happen to anybody, I did not think it could happen to me and not so early in life. I am not telling other people what happened to me, only family and closest friends, my managers at work. I know how they will react If I tell them and knowing that they will pity me and feel good about their lives, I understand that it would be normal but I will miss the life I no longerhave. Eventually people will figure out, but right now I cannot tell anyone. I have enough on my plate I cannot deal with, my children will see their mom during chemo, the constant worry about how it will be in the future. You are right you are only people who understand, maybe surfing daily on this site is a part of my new normal. People are still visiting this site after so many years and I am grateful because this is a proof that survival is a real thing. I have updated my diagnosis, you and I had a surgery on the same day, my treatments are still to come. Thank you for your reply. (Hugs)
Sincerely,
Cherry
0 -
Cherry-SW. Sorry you had to join our club, but you have found a great group of supportive women, a place to ask questions, a place to rant with no judgements. I have similar diagnosis to you, started my journey back in April. I have 2 chemo infusions left, then on to next treatment. It hasn't been easy, but have managed pretty well. We are all here for you.
0 -
What a supportive group! I appreciate hearing all of your encouragement as well. Such wisdom.
Cherry, I also know your feelings of desperation and detachment. I really think that the time around the initial diagnosis is one of the toughest emotionally. Once I met with my oncologist and had a treatment plan, I felt so much better knowing how we were going to take action. Hang in there and come back to these forums for support.
Hugs from Colorado!
0 -
HapB, my eldest girl is 21, she is in university, but my youngest is just 11 and my heart breaks for her. She knows I am not feeling well, I cry often and I have withdrawn myself to the bedroom because when I see her and talk to her I just feel so sad and sorry for everything what happened. She is a daddy's girl and he keeps her busy but I cannot be around her as I used to because it breaks my heart. And I know that I say the same thing in every post and private mesage about how my heartdoes break but I do not have any other words how to express it, it does break and so many time a day that I lost the count. I will try to get some councelling on how to tell her what is going on, but she is so young and I just think of how she will feel that all other mommies are there and picking from school and laughing, being as usual meanwhile her mom is sick, fighting cancer and she is so small to understand it, she will be worried sick, it will leave an imprint for life, I hate that it will change her life like this. I just have to pull myself together and I cannot. I know people will say: well, it is what it is and she will understand but this is not what you wish for your child to go through something like this. I am sorry that I get so emotional, I hardly stand this pressure.
Sincerely,
Cherry
0 -
BJI, T-Sue, in time like this you are all I got, even If I cry and break down a lot, I try to spare my family from how I really feel. I mean I share my fears and the info I get from web but inside I cry all the time and I am doing my best not to do it at loud. So far I have not felt any relief, not after the surgery when they said: well, we got it all out, you know people usually celebrate at this point. I just looked at the surgeon and thought are you people for real? Celebrate what, what is positive about all this? You just told me I have one of the most aggressive sorts and I do not know how I will make it through the treatments, I red on Herceptin and got scared. That it does no break the brain blood barrier and that it can give you a heart failure. Tripple-positive is not that common, I am looking at all studies online to see the outcome. And I am holding on to this site. Hugs from rainy Stockholm.
Sincerely,
Cherry
0 -
After my lab results, they put off my chemo on Wednesday 8/2 until my numbers come back up, also so that I can build up my strength. I will go this Wednesday 8-9-17 to try again. I really did need to get my second wind after #3 so, I will not complain. I had an echo Friday (three months since my first) and hopefully and prayerfully everything will be good there too. I am not the type of person to take naps pre-cancer but now I do, yesterday a 2 hour nap helped me so much and I still fell asleep at 9ish without any problem.
Cherry, I am so sorry you too are having to go through this, I promise you that this is a place where you will gain a wealth of information and support. I learned so much and have met MANY SURVIVORS, which gives me hope! We as triple P's do survive now and have a fighting chance against this cancer. I have days/weeks where I can't even come to breastcancer.org to look anymore because I am overwhelmed with it all but, where else can I go where people actually understand? We all help each other through! Promise me that you will not go to random sites about triple positive breast cancer........they give only horror stories and not hope. Prayers to you. ((hugs))
Bareclaws: Round four watch out, here I come!
Melanie
0 -
Hi Melanie,
We have similar tumors I see, mine is 1,5 cm and then I also have surrounding DCIS component, but the IDC itself is 1,5. I am amazed at all of you ladies, your courrage, strenght and determination. I dread both chemo and Herceptin, and the time afterwards, I cannot let go the life I used to have, this feeling of having so much time ahead of you, being strong and still relatively young. And all this time prior diagnosis I was actually sick, because I had cancer but I didn't know about it. Now they need to make me so sick in order to get me free of this desease and nothing is guaranteed. I have already promised myself not to search the web, but I still do. Thank you for your encourraging words and good luck with round #4. I will need all support I can get, turné out I am not strong at all.Hugs
Sincerely,
Cherry
0 -
Hapb thanks so much for the nutrition tips and smoothie recipe. I gave up dairy a year ago and I feel so much better.
Shelabela, I always smile when I read your posts! So true about the comments from people and finding out who your friends are. As I'm nearing the end of my treatments people have been saying, "won't it be nice to be done". Sure it will be nice to be done with INFUSIONS but they just don't understand we will never be done with this journey. Our bodies will never be the same and we must still deal with SEs from the AIs. We'll forever be hyper vigilant watching for recurrence BUT we are stronger and better for going through this. We have a deeper appreciation for life and our loved ones and we're grateful for all we can do. I too just smile at the comments and move along.
Cherry cw, you will find this community to be a source of strength and understanding in the days ahead. We pray, encourage, cry, get frustrated and fight for one another. I feel blessed to be part of this kinship and you will too! You might not feel strong now but you will become a cancer warrior too and that will be a wonderful example for you to set for your children.
Moodyblues- sending hugs and prayers that round 4 goes well.
Hugs and blessings to all 😊
0 -
Does anyone know of a source / website for information on how the different treatment options are chosen? I'm looking for what factors / characteristics of the tumor / nodes / markers etc. point an oncologist in one direction or another. There seem to be a lot of different options, and I want to know why one MO recommends the works (chemo, rads, HR, etc) when another one doesn't for what appears to be the same dx (type, size, stage, grade, markers, etc.). What questions are they asking to make the recommendations?
0 -
Hi Fleur!
Check out the NCI guidelines:
https://www.cancer.gov/types/breast/hp/breast-treatment-pdq
Oncologists often follow these guidelines because insurance companies are more likely to pay for the prescribed treatments. Good luck with your surgery!
0 -
Elaine, thanks for the well-wishes & for the link! It is frustrating though that the NCI doesn't list triple positive, just ER/PR+, HER2+, or triple negative.
0 -
Thank you Deni and Cherry.
Hapb Any recipe's in that book with DARK chocolate? ? Mmmm
0 -
HapB. Sounds really good, can't wait to try it! Thank you.
0 -
Has anyone had popping in ears as a side effect? I had round #3 which gave me a lot of problems (even had to miss #4 in order to get my numbers up). It has been 4 weeks and 'just' in the last several days I have noticed my one ear has a popping sound inside. It is like a dull pop, very similar to when you're in the mountains and your ears pop due to elevation drop or rise. Happens multiple times a day.
0 -
I haven't noticed the popping sound in my ears, but it really wouldn't surprise me if it was related to treatment. I think that treatments can affect blood flow and pressure.
On the note of sx's, does anyone know if Herceptin tends to lower our resistance to infections (we know chemo does)? I know that Herceptin itself is an immune therapy, but I feel like I'm sick a bit more often. I wrote on here recently about a stomach thing (which seems to have cleared - hopefully won't happen again) and now today I feel a bit ill - flu-ish. Slightly sore throat (well, more in soft palate area of my mouth), slight cough, generally feel crappy.
Just wondering...
0 -
PoseyGirl. My sheet of SE's from doctor noted that one of the SE's from Herceptin is infection and flu-like symptoms. It did say these occur in 10-29 percent of patients.
0 -
Thanks, Moody...I wonder what that means on the list of side effects re: infection...just more susceptibility?
I am wondering if things can start to act up more as we get further into treatment. Usually 'they' say that side effects tend to diminish as treatments of Herceptin go on. But I am questioning that line of logic a bit. For me, some definitely got better (chills, rash), but if my recent things are related to Herceptin, they are brand new and I feel crappy. I have two left..
0 -
Hi Hapb, which isn't good...the swearing and the heart ones? Or just all in general...
0 -
Keep in mind that, as a triple positive, by the time you get to the end of Herceptin you have also had surgery - often more than one, some of us have had radiation, and are taking anti-hormonal therapy, so figuring out what caused what side effect can be a bit of a mystery.
0 -
hap - your response to Herceptin is not the norm, I was actually directing that to other posters here who are deeper into the Herceptin regimen, post-chemo, and also on anti-hormonals simultaneously.
0 -
I have been on Herceptin for almost a year. I had it weekly for 12 weeks with my Taxol, then had it every three weeks since then. Of course I was on it during my radiation. Honestly, I don't think I had many, if any, side effects from the Herceptin. In fact, I do volunteer work at my cancer center on Wednesdays, and every three weeks that falls the day after my Herceptin treatment. I have not had any problems. I am sad that many of you have had problems while on Herceptin.
I think my anastrozole has been giving me unpleasant side effects rather than the Herceptin. I have a treatment tomorrow, then one in a few weeks after which I will get to ring the bell!
M
0 -
Thanks, SpecialK and all... yes, have been through the gamut - that's for sure. I do know that some of my earlier symptoms were Herceptin as they were not widely shared by others, but textbook side effects (rash and chills) and i do suspect that the current ones might be related. But you're quite right that there is a cumulative effect and also late effects Of the prior and present treatments
0 -
Yes, I did read about flu like symptoms but didn't realize that it was experienced by that many!!
I've definitely been symptomatic on it, but nothing that was too intense. I will read this - thanks...
Now, Zometa was a real b**** for me - I felt Awful on the second day. I've only had one infusion of that
0 -
Kae let me know about the zoladex? I feel sooo much better after stopping lupron. I can move my feet again, losing weight etc... but I'm terrified not to have the extra protection. I also see my MO in Sept and I'm really trying to figure out this nerlynx business...
0 -
For me Herceptin was like a walk in the park. I think it was the easiest part of my treatments.
0 -
Me, too, BBwithBC45. But, not everyone is so lucky.
0 -
Tresjoli2,
yes, i will let you know about zoladex. it is now submitted to my insurance.hopefully they will authorize it at once.
0 -
I had a month of just herceptin before I started AI's. I too found herceptin easier than either the taxol or the AI's although SE are getting better. I switched to Teva after my first 90 days and have done better. Thanks to all who suggested it.
0
