TRIPLE POSITIVE GROUP
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Coach Vicky,
I did chemo before surgery for two reasons. First, my lump was big (5 cm+), and the surgeon hoped that chemo would shrink it and give me more surgical options. Secondly, the easiest way to get Perjeta (the relatively new targeted therapy for HER2+) is to do chemo before surgery. If your HER2+ lump is bigger than 2 cm, national guidelines recommend Perjeta as part of the neoadjuvant regimen. Because my MO was following the national guidelines, we had no problem getting insurance to approve it.
Now, there are many HER2+ breast care patients who have managed to get Perjeta as part of their post-surgery (adjuvant) treatment as well. Their medical oncologists were able to convince insurance to approve it. So, there's that.
A final benefit to neoadjuvant chemo is that you can see if it worked for your particular cancer. In my case, we did pre-chemo MRI and PET scans, and then post-chemo MRI and PET scans. Since the post-chemo scans showed no active cancer, I was able to choose a lumpectomy and forego a mastectomy.
Hope this helps!
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Yes, ElaineThere, this is very helpful.
I will ask my MO about Perjeta again. I have a nagging feeling my chemo is not aggressive enough.
Because my DCIS was invasive and without clear margins from my June lumpectomy, I knew I would lose my left breast from the beginning. I opted for the bilateral because my Surgeon and Plastic Surgeon said symmetry would be impossible and my percentages for recurrence in the right breast was high. When a 4cm lobular carcinoma was found via MRI in the right breast, that one was a "goner" too!
I am unsure why I am so reflective on this some 10 months later. I long for a day when I never think about this again. I wonder will that day ever come.
Coach Vicky
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kae - I would wait a couple of months minimum before doing a PET post-chemo to give any inflamed tissues the time to calm down.
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ok ladies has anyone in this group experienced nipple necrosis??? I'm freaking the hell out! I've posted in the surgery boards and well I get ignored grrr!!!! Please help! I had surgery on 5/8. I'm willing to pm pics. Please someone talk to me who may have experiences this
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Hi beautifully broken! I don't have any experience but I hope someone responds with their experience soon. Sending hugs your way!
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Hi Hapb - I pray your recovery from surgery is going well.
My BS provided the same reasoning for bilateral i.e. evidence does not indicate better survival by taking healthy breast. She did say it was a personal choice and about 50% of her patients opt for bilateral if they are overally anxious about getting cancer in the other breast. I had to have mastectomy because I had multiple tumors and it was safest option to ensure not even one cancer cell would be left behind. My BS said that was the critical factor against HER2 triple recurrence.
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I'm doing a clinical trial using Herceptin and Perjeta every 3 weeks for one full year. I am stage 1 with multiple tumors. My situation may be different as this is not standard of care at the moment. I just had DIEP recon surgery last week and start up HP infusions again this Wednesday. I only have 7 left. I did 11 treatments before surgery. I have to give the HP combo credit for my all clear results but since I didn't do any other treatment how do we really know which combo works.
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Beautifully-I'm sorry you didn't get a response. I don't know what it is and they couldn't save my nipple (cancer cells were too close). I hope someone can answer your questions soon. Hang in there
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coachVicky, I hear you and can relate. Draw a line at 2 cm and some get perjeta and some don't. Go the perjeta neoadjuvant route, delay surgery. Perjeta is the carrot.
Some know their node status early. Some wait for surgery. Some get ct scans, pet scans, and MRIs. Some don't.
The guidelines and their application seem arbitrary and inconsistent. Then we read articles saying we are being over treated.
I'm not surprised that you are looking back. I think it takes a big leap of faith in the early going and that means there is no time to consider.
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Thanks Hapb, it's a slow process for sure - I'm not used to moving at this speed lol.
Sending prayers your way as well for the best possible path results 👍0 -
I agree- so much inconsistency with HER2 treatments. Makes it really tough for newbies to know which route to take. Thank God for this board, it helps to know we're not alone
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Beautifully, I am so sorry to hear this and what a frightening thing to happen. I'm sure Special K will post here soon or someone else who knows about this.
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beautifully, so sorry. I didnt have that surgery, but call your PS. You can send him a pic. If there is some pink skin anywhere, they can probably save it. But im sure he will get the page and he can give you a number to send him pics . Or he will wait til tbe morning. But calm down and as long as youre not running a fever youll be ok. Take a deep breath. Hugs and much love
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beautifully - I had a lot of necrosis bi-laterally after BMX. While most of the necrotic skin was on the front of each side, I had a small amount of involvement with both (I had skin and nipple sparing surgery) nipples. I used Silvadene cream (a silver based Rx), but others here on BCO have used nitroglycerin ointment specifically on necrotic nipples or skin, often almost immediately after nipple sparing surgery to encourage formation of blood supply. I did not lose either nipple, but the healing took a long time
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Love you post coachvicky, I love your sweet potato friend....don't we all need someone like that in our life? You are blessed.
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I planted my garden this morning with hubby's help.
It felt normal.
Coach Vicky
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coach vicky, woo hoo! thanks for posting your sunshine news, it lets the rest of us know that our normal is up ahead. enjoy the day
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Yay CoachVicky! Applause!
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Hi Ladies, I had my first chemo today (TCH-P). Everything leading up to this point has been a whirlwind. I had my mediport put in yesterday, boy am I sore from that. I'm not feeling to bad from the chemo so far.... a little tired, mild headache. I will go every 3 weeks for 6 cycles then and additional 12 cycles of Herceptin. I am fortunate my MO infuses me with Benadryl, two anti-nausea meds (Emend & palonosetron) and Dexamethasone before each treatment. I was also able to get the Neulasta auto injector applied so I do not have to return to MO office to receive it. I am aware that the more treatments, the worse the side effects: nausea, vomiting, diarrhea, mouth sores, dehydration and of course hair loss. I cut my hair short Monday and from what I have read here and been told that the hair will be falling out by weeks 2-3. I have so much love, support and encouragement, I feel very blessed. I have been very open about my DX, humor has helped a lot. However, I am scared, angry, overwhelmed and worry for my family and how they are doing. I would love to hear from others in all stages of treatment/post treatment with words of wisdom and advice. When to expect certain things. I will not have surgery until after I finish the 6 cycles of TCH-P. I had to stop my Estrogen hormone patch cold turkey. I am taking Relizen and it helps some. does the TCH-P make the hot flashes, not sweats, etc. worse? Sorry for the long post.
Best wishes to all!
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Hello kmac! I'm scheduled to begin chemo May 30th and will be on the exact same regimen that you are. So I will be watching your posts with interest.
As for side effects, are you icing your hands and feet with the taxotere infusion? Are you chewing on ice chips to prevent mouth sores while you're getting your infusion? Are you taking Claritin with the neulasta?
Ask for your family, a friend gave me some wonderful advice. Your family, and everyone, is going to take their cues from you. If you are okay, then your family will be okay. I can watch my husband and son visibly relax when they see me at the breakfast and I am calm and positive. That's not to say that I am going to be fake or hide. But the presentation will be as positive and uplifting as I can make it. I was a nine year old when my mother got sick and 14 when she died of breast cancer. I am determined to not put my family through what she did.
I will be thinking of you in the next few days and prayers for you not to have side effects.
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Hello Upheld, I actually forgot about icing my feet and hands until you just reminded me. I will put that on my list. I haven't chewed on ice chips because I have been drinking something all day long. My MO told me to mix 1 cup warm water, 1/4 teaspoon baking soda and 1/8 teaspoon salt: take small sips swish and when done rinse with just water to help reduce ulcers in the mouth, can do every 3 hours. I have also read that Biotene mouthwash is good as well. I took a Claritin today will take again tomorrow before my Neulasta pump injects. Probably my biggest issue right now is that my headache is getting worse and of course tired. I think my family is doing pretty well. Like I said, a lot of humor. I would say I have only had 3 big breakdowns and they didn't last long. I'll be thinking about you on the 30th. Let me know how you do.
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Kmac68, I just finished TCHP number 6 today and like you will have another 12 rounds of H only. Congratulations on making it through. The first one is the most difficult as it takes a bit longer and the fear of the unknown drives up the anxiety.
About hot flashes, this regimen puts one in instant menopause. I have experienced hot flashes only since starting with the TCHP, though they are infrequent and do not last very long. Everyone is different.
On neulasta, there are many proponents of pre dosing with claritin to minimize the side effects (bone pain) of the neulasta. You can ask your oncologist. Most dose a day or two before infusion. I follow a chemo group which has been very helpful.
The neoadjuvant route leaves lots of time to consider your options for surgery and looking back at testing for staging. I have struggled with these topics.
There are a few uber experts on this triple positive board that touch down like a helicopter and drop the information you need in no time. Ask all your questions.
Triple positives are special. Welcome to the club.
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Suburbs, thank you! I have been taking HRT for 6 years as I already went through menopause 6 years ago. I've been having some since I stopped my HRT 2.5 weeks ago and I know that has something to do with it as well. My MO did say to take Claritin for the bone pain. How long was it until your hair started falling out? I have also heard cycles 4,5 & 6 are the hardest because the chemo is cumulative and just keeps building up. I will go back and read some of your previous post. Congratulations on the completion of TCH-P!
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Hi KMac68. I had hair a few inches below my shoulders and it started falling out in massive clumps after week two. I eventually had it all buzzed off. I have about 6 wigs in a guest bedroom. I walk in there and ask out loud things like "Who wants to do a movie and dinner out tonight?" This is a recent occurrence. It took me a few months to laugh about anything hair related.
I felt really stiff from pain from the port but it went away after a few days. The post op instructions were priceless. "Avoid sedatives and alcohol for the next 24 hours". We really laughed at that. As if...
I've never taken anti-depressants. A few days ago, I had to start. When asked how I am doing, I reply that I'm taking Prozac and chasing it with Valium until it starts working. So I am doing great. If the anxiety or depression get to be too much or the pressure of wearing your party face for everyone else becomes to much, you might consider asking for something.
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Hey kmac68 and Upheld! I just wanted to let you guys know that I will be sending positive vibes your way as you start your treatment. I finished my six cycles of TCHP on 3/30 and just had my bilateral mastectomy on 5/9. You will get through this! The meds for nausea do their job VERY effectively. I was given Zofran and Compezine and never even took the Zofran because the Compezine was enough! I worked full time through chemo as well. I didn't ice my hands or feet during infusions but I wish I had because my fingernails look awful! I did suck on ice chips though, and didn't get any mouth sores. I shaved my head before starting chemo and just rocked the bald. Now I have fuzzies growing in so I look like an overgrown kiwi
I don't have much advice to give with the neulasta since I only got one with my very last infusion. I can say that I didn't take claritin with it and experienced bone pain. It wasn't the worst pain ever, but it lingered for several days, so that sucked. If Claritin is suppose to help, then by all means take it!The absolute WORST was the "Big D" (diarrhea). Invest in Imodium-once the poo typhoon begins, it can be a challenge to control. STAY HYDRATED!!!
I did go through what is called chemopause. I haven't had a period since January and I did (and still do) experience hot flashes. I'm hoping my symptoms don't get worse once I start Tamoxifen. But all in all, chemo is doable. I was scared to death of chemo and I made it through and so will you. Upheld gave some really good advice regarding your family. A week after my infusions I would return to work and you could feel the calm take over the house because Mom was better and all was right with the world.
PM me if you have any questions or would like to chat!
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oheitsdeedee, great post. I admire your attitude. Sound like you just keep moving forward and working with the hand you've been dealt. Welcome to the triple positive group. :
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Hi Kmac and upheld, just under three years ago (started Treatment 7/10/14) I was where you were. Same treatment regimen. First chemo was the toughest, I think they upped the dose to hit it hard and then dialled back. I won't lie and tell you it was easy, it wasn't but each step of the way is closer to getting back to normal. And you will. You will look back at this is a very large bump in the road. Good news, as I am sure you've been told, the drugs for HER2 are a godsend for a positive outcome. Take it one day at a time and look forward. Btw, I didn't get mouth sores at all though I did lose my taste which was difficult. Upside, I lost quite a bit of weight (except I've now gained it back!). Be gentle with yourself and let your family be there for you. It's okay to give into the grief of being diagnosed with BC. You'll be surprised how quickly the next three years goes. Hugs (btw, surgery and radiation were a cakewalk for me).
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DeeDee, it's so great to hear from you! You sound very positive and in control. We have similar dx, same time frame but I had to switch from TCHP to AC plus Taxol. Getting Herceptin now too, weekly until December. I had a BMX, between AC and Taxol, which was no big deal, easier than chemo, for sure! Anyway, it's only now, six months down the road from dx, that I'm startg to feel like I'm managing my treatment, and my life. My hair fell out early on, but started growing immediately and has continued to grow during Taxol (#5 tomorrow) Not fast, or thick, but my scalp is almost covered. Of course, it may all still fall out again and I'm prepared for that. I'm getting back to running, ever mindful that Herceptin can cause heart damage. Now if I could only shed the eight pounds gained over last few months
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Not tough so much as mean and stubborn!
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Suburbs, I love your humor with the wigs! I haven't decided if I want to get one, living in Texas the summers are very hot and I'm pretty sure I would want to wear one, especially every day. I've had my port for 2 days and it's already feeling less sore but very itchy with it healing. Luckily I already take an antidepressant and my Dr. gave me Xanax the day of my diagnosis which I only use if I really need it.
OhHeyItsDeeDee, Thank you for the positive vibes, they are greatly appreciated. I will make sure that I get the cold packs for my feet & hands. My Neulasta injected tonight, I took my Claritin today and advil a while ago. So we will see how I feel in the morning. I am dreading the "Big D", I have IBS as it is and this is just going to make it worse. I am drinking water and Gatorade all day long. You said you worked through chemo. Did you stay home the first week after chemo? I went today and felt exhausted by the end of the day and I am going to take tomorrow off. I just don't know what to expect and when. Thank you for all of the great info.
Rufhew, I keep telling myself one day at a time, one chemo treatment at a time. With all of the things a Triple Positive brings, I feel fortunate to have this at this time with all of the targeted therapies that work so well. I know I need to let myself go through whatever stages I need to as far as grief. As with most women and as a Registered Nurse, I am the one who takes care of everyone else and it is hard to let go of that. Thank you for your words of encouragement. Hugs
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