TRIPLE POSITIVE GROUP
Comments
-
Thanks for the -- -- makes me feel better to know -- guess I am moving around a lot-- thank you for sharing -- helps to know what is going on with your body and that other people have gone through it too-- thank you
-- really appreciate your taking the time to reply 0 -
Sportsmom
I found my drainage record sheet that shows dates from 12 July thru 19 July 2016. I had a PS appointment on 20 July and I think that is when the first two were were removed. I think the last two were removed 29 July.
I remember having them for so long that I thought I should name the dang things!
My PS was adamant about me keeping my arms down, tight and to my sides. I drank coffee from a straw so I would not lift my arms. I bought a TV pillow and slept sleeping upright for a long time.
For weeks it seemed my PS would only let me walk for 20 minutes in a controlled environment. No sweating.
I know life can get boring but take it as easy as you can. You are at the start of this journey and (for me) going slow at first made it easier to go fast now.
Words of wisdom .... I don't know if I have any wisdom words. I would just offer that you take care of you. It is OK to ask for help.
I had a lumpectomy on my left reconstructed breast 13 April. I was at the grocery store Saturday (yesterday) and asked for help getting a case of water into my basket. It was too heavy and would put a strain on my newest incision. It really is OK to ask for help. This was hard for me to do at first and learn to do. I discovered people like helping others.
Coach Vicky
0 -
I don't know about that "not moving around" thing. I started range-of-motion exercises the day after BMX, walking outside for 2.5 miles three days after surgery and generally tried to be active. Drains came out at eight days. Your mileage may vary. Maybe I'm just not very "juicy".
0 -
Hi everyone..I had left mastectomy last Thursday and they only removed 2 nodes, both cancer free! Targeted therapy before surgery seems to be very promising, I will get full pathology by end of this week. So far things are going better than I expected. Pain is quite manageable, drain is annoying but I'm getting used to it. Bare claws you have inspired me to get active and coachvicky I will make sure to ask for help (that is hard for me!). I believe recovery is an individual experience and you have to listen to your body. I have reconstruction surgery on May 9th, I'm ready to get all the surgery stuff done with and get back to normal whatever that is
For those of you having surgery in the future, I highly recommend joining one of the surgery boards. I found many of the tips and suggestions very helpful. I felt well prepared mentally knowing what to expect before, during and after surgery plus the support gave me extra confidence when my fears crept in. I am in the April 2017 surgery group but I'm sure there are May and June groups out there too.
0 -
deni1661,
Best wishes on getting to your normal.
Good advice on the surgery boards!
Coach Vicky
0 -
deni1661, very good to hear your surgery was successful and that you are resting comfortably. Sending best wishes for a good report card from the lab and the next step in your reconstruction. Excellent news. Thank you for keeping us posted
0 -
thanks for the well wishes! I received good news on the pathology today - clear margins and only a few cancer cells in the breast tissue. While not a pCR, my MO is giving me a 99% response to treatment. The cancer is officially out of my body, yay!! I feel this is very promising for the other patients in my clinical trial and others doing neoadjuvant treatment. It seems HP shuts down the growth of HER2+++, which is the primary objective of the clinical trial I'm in. I pray everyone with surgery coming up experiences the same great results.
Now that I won't need radiation or chemo I can proceed to the DIEP recon next week. I feel better each day - went for a 20 minute walk today. Luckily my husband is watching me like a hawk and won't let me doing anything otherwise I would do some spring cleaning lol
Praying everyone is feeling good this week and recent surgery graduates are healing nicely 😊
0 -
Great news, Deni! Hopefully, future HER2+ BC patients will be able to skip the taxane chemos because of your study! Awesome results!
If I have to get further surgery in the future, I'd think about DIEP recon surgery, too. Plenty of subcutaneous fat in the tummy area -- it would be like getting new boobs + a tummy tuck.
0 -
Thanks Elaine! I tried to contain my excitement about the bonus tummy tuck myself lol
0 -
Deni1661,
I am leaning towards that surgery also. Added bonus is what I thought. If I have to go through all this then I might as well try to get a better body! LOL. My PS told me I am a good candidate for that. He also said something about Fat grafting to get the size I want. Even a better idea.
Good luck! Glad you got good news
0 -
So I know it's been a while since I kinda checked in with everyone. Besides two lovely ladies whom I text with. My posts are usually rants or looking for advice. Sometime support. My update is......
On last Friday. A week ago today I did in fact meet with and got a 3rd opinion from a plastic surgeon. I have to say she was wonderful. She was so informative right down to drawing illustrations of what will be happening. Her bedside manner was amazing. I feel fortunate and comfortable with my Plastic Surgeon, as well as my General Surgeon completing my double nipple sparring mastectomy. I feel blessed they are willing to go it a go.
On the down side. Depression hit hard and it hit quick after meeting with the first Plastic Surgeon to the point of me calling a doctor and being put on an antidepressant to help cope with this awful time. It's crazy to say I'd rather keep doing chemo than to ever face this surgery, hair loss and all. With not much time to prepare, as my surgery is this coming Monday 5/8/17, I'm praying to the Lord above to have this weekend go by so slowing almost as if time is moving backwards. I'm not at all prepared mentally/emotionally for what lies ahead. I want to break down and cry so often, yet hold it in on too many occasions as to shield my daughters from seeing my fear and they are already so scared. I'm so scared too and feel like I'm dying inside 😓. I want nothing more to save my life and I refuse to let cancer take me. I hate the fact that at the age of 28, I had a partial hysterectomy due to medical reasons. Now here at 33, in just a few days I will loose my breasts to cancer. I've tried to talk to some friends very few about what lies ahead and my feelings. Yet they don't get it. I truly wish they could. Wish me luck ladies as I go under the knife this coming Monday to loose another piece of my womenhood. Then 28 rounds of radiation to follow with continued herceptin treatments every 3 weeks....
I kind of hate life right now, and wish with all of my heart that I was not dealt this hand for myself or any of us.
Private message replies as I'm not on the boards often.
0 -
I am a newly diagnosed with invasive ductal carcinoma with a positive lymph node. I have at least three tumors in my breast and am triple positive/HER2+. I am having a PET scan, MRI next week.
Oncologist said if he doesn't find cancer anywhere else, his plan is for 6 cycles of TCHP before surgery.
Please tell me about triple positive diagnosis. Is it worse to be triple +? What can I expect from this chemo regimen? Any education you can provide would be so appreciated as I am trying to process this. Thank you so much!
0 -
Upheld,
About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (Herceptin and Perjeta [if tumor is bigger than 2 cm]) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.
In the past, testing positive for an overexpression of HER2 was a bad thing. Only 40% of BC patients who had HER2+ cancer were still alive, five years after diagnosis. However, with the development of targeted therapy (Herceptin and now Perjeta), the survival rates of BC patients who are HER2+ are about the same as for other BC patients. That is to say that over 90% of HER2+ cancer patients who were diagnosed at Stages I and 2 are still alive after five years, and that over 75% of HER2+ cancer patients who were diagnosed at Stage III are still alive after five years.
The big difference between the HER2+ and HER2- crowds is the length of active treatment. For example, I had five months of chemo (AC + THP) and then a year of Herceptin after that. It's a marathon, not a sprint.
TCHP (Taxotere + Carboplatin + Herceptin + Perjeta) is a very common chemo regimen for triple positive breast cancer. Since I had Adriamycin + Cytoxin and then Taxol + Herceptin + Perjeta, I don't have personal experience with this regimen. But, it is gentler on the heart than AC + THP. I do know that Taxotere can cause gastrointestinal issues like diarrhea and acid reflux and the like. I had Taxotere's (supposedly) gentler cousin, Taxol, and it gave me mild diarrhea which I manged with Imodium. There is also a very very very very very small chance of permanent hair loss with Taxotere which some patients maintain that they were not warned about in advance. (Indeed. there are some women at BCO.org who have had this rare side effect.)
Hoping that your PET scan shows no cancer spread! I've always found PET scans to be more relaxing than MRIs. ((Hugs))
0 -
Upheld,
I am Trip+ and just went through 12 weeks of Taxol, with herceptin and perjeta every 3 weeks. And i am now doing AC
So I don't have much advice.
But I can support other ways.
Wth herceptin and perjeta I had have a runny nose the week after. With just the Taxol I was able to work every day except the day of treatment.
Sorry you found yourself here but we offer a ton of support here. Welcome
0 -
Elainethere, thank you so much for the thorough explanation! Shelabela, thank you for your kindness. I am one of those who likes to know what to expect so I can prepare myself. That being said, I know I am not in control and I can't prepare for every contingency. But education does relieve some of the stress. What are there side effects of taking Herceptin for a year? What about also taking Neulasta? What are the side effects and how crucial is it in preventing neutropenia?
0 -
Upheld,
Anyone getting Herceptin (either as part of TCHP or otherwise) should have their heart monitored because it can cause (usually reversible) heart damage. Prior to starting chemo and Herceptin, I got my first heart scan, which served as a baseline. Then, I got a heart scan every four months until I finished Herceptin. I was one of the lucky ones; Herceptin had no effect on my heart.
I didn't get many side effects from Herceptin alone. I think it gave me a runny nose, but I always seem to have one of those anyways.
I got Neulasta shots after each of my AC infusions; they did indeed help me maintain an acceptable level of white blood cells. Some women do have reactions to Neulasta; many BC patients here take Claritin to avoid the side effects of Neulasta. I never really got side effects to Neulasta so I skipped the Claritin.
No matter what, you should remember that everyone experiences chemo and targeted therapy differently. One thing that is very helpful is to keep a journal of your side effects so you can anticipate future side effects. For example, I would get my THP on Wednesdays but it wouldn't really kick in until Friday when the steroids wore off. By Friday, I would be experiencing mild diarrhea. So, I made sure to take my Imodium on Friday morning and to know bathroom locations. (I now know where all the bathrooms are in the grocery stores in my town.)
Another thing that is very helpful is to join the chemo board of the month when you'll be starting chemo. I joined the July 2014 chemo board, and I still stay in touch with some of the ladies there.
No, no one is "in control," really. It is just another part of life that -- as the Serenity Prayer puts it -- leads us to seek serenity to accept the things we cannot change. ((Hugs))
0 -
ElaineThere, what can you tell me about the port they put in to administer the chemo? Does it hurt when they access it? What does it feel like in your body - does it irritate you or do you hardly know its there? Can they draw your blood for lab work from this port or is only for infusion?
0 -
Upheld,
I still have my port! I'm keeping it until I pass the 5 year mark. Some BC patients experience pain during port access; you can ask for lidocaine or Emla cream if you like. The nurses at my clinic use some kind of cold spray to numb it up. But, personally, port access isn't painful for me, so I don't ask for anything. My port doesn't bother me, though it is visibly apparent if you look hard enough when I wear certain clothes. Some women hate it; I don't have a problem with it. Yes, it can be used for blood work. I have also used it for PET scans and heart scans and the like. I could not use it for an MRI because in breast MRIs, you're lying chest down.
0 -
Thank you again for your reply! So. what are the top five things you would want me to know about what's next?
0 -
Hmmm....
1. Don't be too proud to accept help. Keep a list of practical things that others can do to help you out, and then when someone asks, you have a suggestion. For example, a friend of mine set up a Lots-a-Helping hands page for me, where I could make requests for help. People helped me out by picking up my daughter from softball practice or basketball games. Others brought me dinner on Wednesdays, when my husband was teaching a night class. And so forth.
2. Plan ahead for hair loss. I had my wig ready for hair loss. As soon as my hair started coming out in clumps, I decided it was time to get a crew cut and move to the wig. Or, if you prefer, you could research the cold caps alternative.
3. Neoadjuvant chemo gives you more time to think about your surgical options. So, now is the time to research. My chemo ended up wiping out the active cancer in my breast and compromised node. Moreover, I had tested negative for BRCA cancer, so I decided that a lumpectomy was fine for me. But if you're thinking mastectomy or double mastectomy, neoadjuvant chemo will give you the time to decide whether you want to be "flat and fabulous" or to reconstruct, as well as to research the different reconstruction alternatives.
4. As I noted above, treating triple positive cancer is a marathon not a sprint. The road can look so long, it is easy to despair. Just take it one step at a time, and don't look too far ahead. Before you know it, you will be done with active treatment.
5. Don't forget to breathe. It is easy to get numb from all the appointments, treatment, and side effects. So, don't forget that life is still out there to be lived, if at a slower pace perhaps. Take care of yourself and spend quality time with family and friends. Cancer is a reminder of the fragility of life and how we should savor it.
I'm sure others will have suggestions, too!
0 -
Aren't Taxol and Taxotere two different drugs? I'll also be taking Carboplatin. Then the Herceptin and Perjeta. Is all of that possible by IV?
0 -
Yes, Taxol and Taxotere are different drugs, but they are both taxane chemos (so they are similar). Yes, TCHP is all possible via IV.
0 -
Upheld, sorry you have to be here but you're in the right place. As you can see from the great responses you've received so far, there is a lot of information and support in the group! I was terribly scared about my triple positive diagnosis and especially opposed to doing chemo. I had 2 tumors far apart and enhancements in the outer quadrant of my left breast. I sought a second opinion and met a forward thinking oncologist who has been researching better treatment options for HER2. He presented me with the opportunity to participate in a neoadjuvant clinical trial taking Herceptin and Perjeta only every 3 weeks (no chemo). I started in Sept 2016 and I also take Arimidix daily. I had no obvious side effects from HP but had a runny nose, muscle aches and fatigue from the Arimidix. I did not lose my hair although it did get thinner. Within 3 months the tumors and enhancements were not visible on MRI. I worked full time throughout treatment although there were days that I had to work from home because of the fatigue. I had to have a port because I have terrible veins; the only issue with the port for me is I can't sleep on that side. I was not eligible for a lumpectomy because the tumors were too far apart. I just had a left breast mastectomy on April 27. They removed 2 lymph nodes which were clear, margins were clear and there were only a few cancer cells left in the breast. They declared I had a 99% response to the HP treatment. I am healing nicely from the MX and have reconstruction surgery next Tuesday May 9. I will resume HP treatments in a few weeks for 7 more cycles to finish out the clinical trial.
My situation is unique in that I did not have chemo but I still had excellent results. All the other women in the trial are having similar results; I was the first to have surgery. My hope is the FDA approves this treatment to be standard of care in the future for HER2 triples!
As Elaine mentioned, neoadjuvant allows you time to research surgical options. I chose DIEP because my plastic surgeon said it was the safest and there would be no need for revisions. My desire was to have as few surgeries as possible so fingers crossed. Neoadjuvant also shuts down the HER2 receptors so the cancer doesn't have a chance to spread. I changed my diet dramatically and lost 40 pounds and continued to work out 4-5 times a week throughout treatments. I removed many stress triggers from my life and started meditation. My MO felt the lifestyle changes contributed to the good response I had.
The process is long but have faith you will beat this. While I would never wish cancer on anyone, I have grown as a person from this experience. I appreciate all of God's daily gifts and have the greatest admiration for every woman who has battled BC before me. I consider all the women in this group to be friends and find comfort in their support. You will never be alone on your journey! Do not be afraid, be positive and you will be triumphant!
Welcome to our group. I wish you the very best!
0 -
Dear Upheld
I am sorry you find yourself here. I am also happy that your are finding others to answer your questions.
Here is my 2 cents.
This site has great easy to read articles specific to your diagnosis. Use this research to understand your cancer and treatment.
I got the port. It sure made my treatments easier. You will get a cream to put generously on it 30 minutes before treatment. Use Glad Press and Seal over it so it won't get our your shirt.
Go to the Rapunzel Project and see if you can control your hair loss. I only loss maybe 40% of my hair.
You can also control your exercise. The best advice I got from a Survivor was to walk. KB870 comment about her swim group and feeling normal is wise advice.
You don't have to move or act like the woman in the Neulasta commercial. ElaineThere is so right. This is a marathon and you can control your pace. I took the shot returning to my treatment center the day after. I found the chat with the nurse very valuable in her checking on me and giving advice.
She is also right about savor life. Stay open to the lessons this journey will teach you.
Before cancer I could easily see a 1/2 empty glass. The cancer journey has taught me to see the smallest drop making the glass 1/2 full and find something positive. Frankly, I owed it to my husband to stay positive. He has worked his butt off to care for me and keep our business going. He became my inspiration to do better each day as to how I handled this.
I did hire someone to help with the housekeeping each day of treatment which was every 21 days. When I came home from treatment the house was cleaned. That did a lot for me being able to come home and not see "work" to do or ask my husband to clean the house.
Some people will come forward and help you in ways you will not expect. A friend harvested100 pounds of sweet potatoes from the garden I planted just before diagnosis. She cleaned them and wrapped them for the winter. She called everyday after I had a surgery on her way to the grocery store to see if we needed anything. I never knew she cared that deeply.
Sadly, some people will leave your life. They won't know what to say or do so they say nothing and do nothing. Stay focused on those who surround you with their love.
Best wishes. Stay strong.
Coach Vicky
0 -
Upheld,
I've responded to your private message. I just wanted you to know.
0 -
deni1661
That was a great post!
Coach Vicky
0 -
Yes it was! And so was yours Coach Vicky! I am overwhelmed by the kindness on this board. My question for Deni1661 is, did you have a positive lymph node on biopsy? I have three tumors visible and then a mass that they are doing an MRI on next week. I'm wondering if the regimen you described with no chemo would be possible with a positive lymph node and multiple tumors.
0 -
Hi Upheld,
Another triple positive gal here...
I am guessing you'll be strongly encouraged to do chemo. Whenever HER2 is involved and it's stage 2 or more, I think they want to go with chemo. But of course, it's ultimately up to you.
I am finished all treatment except Herceptin every three weeks...this week is number 13. I do get a few symptoms from Herceptin, but most people don't. In the beginning, I got chills all the time. I also got a tiny rash (or just isolated and itchy spots). The spots don't happen any longer and the chills are minimal. I get a few aches and pains but they dissipate quickly too. Some people get headaches (they'll give you Tylenol prior to your treatment usually).
Good luck with your treatment...Oh, and Iost my port 4 chemo treatments in! It actually eroded through my skin and they took it out. But that happens rarely, so you won't have that. I just think I'm very slight of build on top, so there wasn't a lot of tissue to work with.
I was fortunate that not many people 'disappeared' from my life, but there was one friend who I was very surprised about. She managed to say something about a week after I posted on Facebook, but then basically disappeared. We chatted a couple months ago when I reached out to her, but I was quite surprised. And I faced a few people who said really stupid things because they don't know what to do and are trying to make some kind of connection. But for the most part, I have been surrounded by the same loyalty and beautiful people I have always known. My credo now is that if someone is upsetting you, you tell them exactly how you feel and what you need
.Beautifully, best wishes for your surgery. Really, no one but those who are in our shoes can really understand what this whole trip is like. It strips us down and we have to build ourselves up brick by brick again. I cried constantly for several months. I am almost one year in, and I still cry a few times a week. We are grieving the loss of things we took for granted before - like our hair, like not thinking of every ache and pain, like not looking at scars on our chests in the mirror, like sudden menopause (I had an oophorectomy end of March and now I have some symptoms and am wondering what the h-LL they are. It just adds up, so a good cry is important, not to mention reaching out to tell people who are close to you that you are struggling. I find that really helps.
I have a friend who just emerged from breast reconstruction last week and she's doing great. I am sure you will too. It's a huge step and another reminder of all you've been through - all we've all been through. Your feelings are natural and I think you will move through that stage soon once you get recovery well underway...best (or breast) wishes...
0 -
Hi HapB!
Doctors advise all patients with triple positive cancer to get chemo + Herceptin. (See p. 1019 for my explanation of triple positive cancer, provided in a response to a post to Upheld.) However, some like deni1661 are part of studies where different regimens are explored. Deni1661 only got targeted therapy (Herceptin + Perjeta) and had excellent results.
You don't give us your stats here (size of tumor, e.g.), but it seems like your tumor is small or you wouldn't be doing 12 weeks of Taxol (the only taxane which would prescribed in weekly doses). Taxol + Herceptin is a relatively gentle chemo regimen. I had it after four doses of Adriamycin and Cytoxin, and it was OK. It gave me mild diarrhea.
I'm sorry you find yourself here. Cancer is no fun, and getting it twice sucks. If you want to learn more about deni1661's study, why don't you send her a personal message? Then you can talk to your doctors about whether or not you might qualify for that option. ((Hugs))
0 -
HapB
I have my treatments at Clearview Cancer Imstitute in Huntsville, Al.
Getting chemo was a pretty easy decision. My husband asked my Oncologist what would happen if I decided not to take chemo. He said "She doesn't have to take chemo. But when her cancer returns and it will return without treatment, it will be lethal."
I said, "Can I start Monday?"
This conversation is etched in stone in my mind. It makes the treatments easier.
Coach Vicky
0
