TRIPLE POSITIVE GROUP

oh HapB, I'm sorry if my post offended you. I wasn't trying to hit a nerve. I was just trying to point out that driving yourself to treatment was doable if you give up the benadryl. I'm really sorry.

There are some resources out there to help you. The American Cancer society is terrific. They can arrange rides for you, they can help you with getting a wig. There are even people who will come and clean your house for you if you are sick. But if you call ACS they can help you get pointed in the right direction.

Lots of hugs to you. This journey is so hard and I'm sorry you had to join us here..

Love,

Pamela

hello kmac, been good here now that i am in my 2nd year with clean results. The claritan helped alot, if you get joint or bone pain, take it day before treatment and several days after. Did not get perjeta, her diahrea is a side effect, but deends ob your diet. Crackers and peanut butter helped alot. Stay positive and lots of water, water, water.

I received my port Friday.  Said to keep large bandage on for 48 hours and then take it off, to tell you the truth I was high as a kite and remember very little of what they said.  Instructions say 48 hours remove bandage.  Weird that I worry about this bandage more than the bandages on other more sensitive places AFTER MASTECTOMY.  I cried several days b4 the port , as I knew this meant the chemo will start soon.  You all have made me smile and laugh, I love the humor and bluntness off the posts.  I seriously don't know what I would do with out you. 

Thank you for all of the info.

Yep, those infusions are expensive. That's why Perjeta is less available in countries with public health care systems. So, we shouldn't take them for granted.

Thank you everyone for your support and comments. My apologies for the late response. I couldnt figure out how to get back to this thread. It's quite comforting knowing that I am not alone and that there are strangers willing to give their time and advice. I will look into the gelcaps. Is that the same as the coldcaps? I looked into clinical trials and saw none for triple postive. I really do think that having a great support system is key. My family, friends, few coworkers (that know) and my church family have been soooo supportive. Sometimes I get tired of the how you doing calls/texts, but I know that they mean well. Lol I tell them to act like everything is normal. If we only spoke once a week prior to the diagnosis lets leave it that way. Lol not to be mean but for me to keep some normalcy.

So far I do like my team. Everyone seems knowledgeable and nice. I started chemo about a week ago. The 7 hours flew by. Sounds weird but it really did lol. My side effects are pretty much bearable except for this rash. Im thinking its from the perjeta, but Im being told its probably not. Its surrounds my neck, its on my hands and some spots on my arms. Oh and tonight I see that its on my tongue as well. Benadryl and hydrocortisone does not alleviate the itch or the visuals. I am quite concerned. Has anyone heard of this happening?

BC squad I thank you again. For welcoming me and adding a sense of comfort to hectic situation. You all are so knoweledgeable. I have to look up some of the acronyms, but its really like we have our own language.

New and strong, I had a skin reaction as well. I was prescribed steroids day 5 after infusion 1 and continued to take them until infusion 4 when my MO urged me to try to tough it out without them due to concern about long-term use. After that Benadryl worked to make it tolerable. Topical Benadryl gel and Benadryl at night worked better than the steroids and topical cortisone. Hang in there.

Hello New - I am participating in a clinical trial for HER2 triple positive and just had excellent results from my surgery. Details about the trial can be found in the link below or you can private message me for more info.

https://clinicaltrials.gov/ct2/show/NCT02689921?te...

Your positivity will get you through this. Take care, sending hugs

deni1661 participated in a trial where she just did Herceptin and Perjeta, plus hormonal therapy. See deni's recent posts above for information about that trial. You might ask your doctors about whether or not you might qualify for that study.

Yes, even if you're stage 1, chemo is typically recommended to triple positive BC patients. If your tumor was smaller than 1 centimeter, your doctors might have recommended "chemo lite" or Taxol + Herceptin. However, since your tumor is bigger than 1 cm., I suspect that your doctors will either recommend Taxotere + Carboplatin + Herceptin or Adriamycin + Cytoxin and then Taxol + Herceptin. ((Hugs))

Hi HapB!

If your cancer was invasive, it was probably sustained by a blood supply, which means that cancer cells can be floating through your blood stream now. Furthermore, just because your nodes were clear doesn't mean that cancer cells haven't made their way into the lymphatic system. Cancer doesn't spread like a stain on your dress; it is a systemic disease that can float around in your bloodstream and in your lymphatic system, looking for a new home like your lungs, liver, bones, and brain. Chemo and hormonal therapy are systemic treatments that attack cancer cells throughout your body, not just those in your breast.

Actually, most women with triple negative cancer get chemo even for stage 1. Moreover, women with ER+/PR+ may not do chemo because their oncotype scores are low, but they are all advised to do hormonal therapy, which is a systemic treatment.

So, no, your doctors will not view surgery as enough for HER2+ cancer, even if it is stage 1. Before Herceptin, only 40% of women with HER2+ cancer were still alive after five years. Since women are typically given Herceptin and/or Perjeta with a Taxane chemo, I'm sure that your doctors will recommend chemo for you unless you opt for a study or trial that doesn't require it. ((Hugs))

Hi Hapb - congrats on the great path results. I can relate to your angst regarding the need for chemo, rad, and HP. It's especially hard to understand the need when the cancer is not present. I was fortunate to participate in a neoadjuvant clinical trial without chemo (HP only 6 months before surgery and 6 months post). Tumors were not visible 3 months into treatment! I was expecting to have a lumpectomy because if the tumors weren't visible why would they need to remove the whole breast, right? My MO and BS said that HER2 triple is so aggressive that even 1 cancer cell left behind can turn into a recurrence. My MO said treating HER2 with the current standard of care protocol provides the best possible survival rates and lowers the chance of recurrence. I am so glad my doctors insisted on the mastectomy because they did find a few single cancer cells left behind. They would not have found those cells if I had the lumpectomy. I have since learned to trust whatever my MO recommends.

I'm not sure if you would qualify for the HP no chemo trial since you already had surgery. You might want to discuss the option with your MO to get his/her opinion on the no chemo approach.The clinical trial info is listed below. My MO has had several BC patients outside the trial that chose not to have chemo and did well with HP only. I think the outcome depends on the individual as our bodies are all different and responses are also different. As Elaine mentioned in her post, treatment options for triple positive may vary and that can add confusion when determining which is best for you.

I think it is very wise that you are questioning your treatment options. I did the same when first diagnosed which prompted me to get a second opinion. That second opinion led me to my MO and the clinical trial. I am grateful for my results and credit my doctors and the cancer center's treatment philosophy.

Good luck with your decision. Feel free to PM me if you want more info 😊

https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=1

HapB,

There are a number of online calculators that might help you decide. See, for example,

http://www.lifemath.net/cancer/breastcancer/outcome/index.ph

Be sure to ask your medical oncologist (MO) to calculate the risks of going without chemo as well. You could also ask your MO about Herceptin alone or "chemo lite," (Taxol + Herceptin). Just remember that before Herceptin, only 40% of HER2+ BC patients were still alive after 5 years. Today, though, HER2+ BC patients have survival rates similar to other BC patients. Over 95% of Stage 1 patients are still alive after 5 years. ((Hugs)) It sounds like you've been through a lot in recent years, but you might still have 20+ good years ahead of you.

I thought my five months of chemo would never end, but they did. There are many Stage IV ladies on this board who are living active and fulfilling lives, but I would rather not join them. Their treatments really will never end; it is about stabilizing their cancer, not (potentially) curing it. Best wishes in making decisions!

Hapb  So sorry that you are feeling this way.  I felt the same way as you (didn't want to do anything after MX) and before I could ask my ONCO, he gave me stats that weren't too promising.  He said the HER2 was ugly and it wouldn't be good for me to do nothing.  I thought if I ate right, exercised, stayed away from colorings and preservatives and said my prayers, I could beat it.  I am starting Chemo the 31st.  TCH.  It really sucks but, I am going to fight it tooth and nail

Well, I don't know if "they" call it chemo lite; I call it that because it is a less aggressive, less severe chemo regimen that is often prescribed for women who have small cancer lesions.

Taxol is Taxotere's gentler cousin. It (supposedly) produces fewer side effects than Taxotere + Carboplatin, though I did get mild diarrhea on it. I initially had Adriamycin + Cytoxin, which hit me like a truck. Its impact on the immune system is such that my oncologist had me do Neulasta shots after each infusion. (Neulasta helps your white blood cells recover from chemo.) In contrast, Neulasta typically isn't given after Taxol, though some women do suffer from low counts after Taxol infusions.

I felt mentally alert on Taxol whereas I suffered more from chemo brain while on AC. I had more energy, and performed better at the office.That isn't to say that Taxol is easy for everyone or that it is side-effect free. Like Taxotere, it can contribute to neuropathy in your extremities. To this day, I have mild neuropathy in my fingertips (it's difficult to button small buttons). Unlike Taxotere, I've never heard of anyone suffering permanent hair loss while on Taxol.

My MO told me that more women tolerate Taxol than Taxotere + Carboplatin, and that's why she likes to prescribe it. She'd rather have her patients finish their treatment if at all possible.

I went to Chapel Hill yesterday where the Lineberger Breast Center is located. This hospitals is renowned for breast cancer treatment. I say that so that you will know where the following information came from. I met with a surgeon, a radiation oncologist, and a medical oncologist. They had all reviewed my case, including the original pathology slides and the actual test themselves, not just the reports. They then had a plan before I met with each of them individually. It was a wonderful experience. I'd like to share some things that I learned in the hopes that it may help someone else.

I see above a lot of conversation about projeta. The plan for me was to be on Herceptin alone for a total of a year. That would include the time that I receive it during the next four months while I get my chemo. The Perjeta is a drug that has, according to the medical board joy there, revolutionized the treatment outcomes for patients with triple positive cancers. In fact, there will be a paper presented at the ASCO (American Society of Clinical Oncologists) conference covering all of the trials and results as well as recommendations for this drug. He advised that I should add the Prejeta to the Herceptin and take both for one year.

I asked him about whether or not to take the Zofran prophylactically or just wait until I had symptoms. He told me to take it immediately after I get home, every eight hours. He said that it won't hurt me, except for constipation, and that psychologically, it's better to head off the nausea then go through it one time and then fear having it at every treatment.

He said that patients on my regimen, TCHP, typically get diarrhea or constipation. For the diarrhea, he said to take two tablets at the first episode, not one. . He said to take one tablet after each loose stool until the diarrhea abate's. So a positive from the Zofran is that the constipation side effect may be helped with the diarrhea.

If constipation is an issue, he says that Power Pudding is the key. There are recipes you can find for it on Google. You mix up a batch and put it in the refrigerator. Every morning, you take 2 tablespoons. He and his nurse swear by it.

I discussed icing with him with him during Taxetere. The clinical name for neuropathy is CIPN ( chemo-induced peripheral neuropathy) you can use that acronym and impress your doc! Anyway, if you Google it you will find clinical information and trials that have been completed regarding icing and Taxotere. I asked him about taking vitamin B6 and he said that there has not been any evidence showing that it helps to prevent or improve neuropathy. He said that he does encourage his patients to ice their feet and hands as there are no side effects and if it is effective, it would be well worth it.

The radiation oncologist felt strongly that any breast reconstruction or work after the mastectomy should be put off until after radiation is completed. She said the goal is for a cure and you do not want anything making it difficult for the radiation to be effective. On the other hand, radiated skin is harder for a plastic surgeon to work with. Personal choice.

When I asked what the 3 most important things to do during chemo, they said to drink a minimum of 100 oz of water a day, keep moving, and make sure you are getting your rest. They talked about exercising in some way every day. That it also really makes a difference with neuropathy.

They also stressed speaking up with any side effects or any issues. I have a hard time asking for help or bothering anyone, but this is not the time to be quiet!

The rest of the info I got pertained specifically to my case. I hope this information will help someone else!