TRIPLE POSITIVE GROUP

You were fortunate Lago. Although I had the powerport, when I went for blood draws and other tests no one would use it. I certainly recommend it for chemo, but for the other stuff I always had to get an arm stick. The only exception was when I had my recon surgery and the IV in my arm was so painful I begged them to use the port and it worked well.

KDTheatre:

Hello - I'm so sorry you are here but I'm hopeful you will find some help and peace.

Wanted to say I feel for you. I had a similar situation. My original core biopsy was HER2- but the final surgical result was HER2+. I think this happens a lot because the tumors can have areas that are both HER2+ and HER2-. In any case, I totally LOST it at the HER2+ news. Crying, hyperventilating, the whole paralyzingly ugly nine yards. I think it was so difficult because everyone had prepared me for what was going to happen assuming that I was HER2-. My nurse navigator kept referring to ER+ /HER2- as the "friendly" cancer. In hindsight, I wish she would have mentioned that not only were we waiting on the final pathology report for the size of the tumor but also the final HER2 status. I had laid out a path of how I was going to survive and then suddenly the path was lost. You will get your bearings again. Herceptin has been around a long time now. It has a great track record and works well. I did see several oncologists before choosing one and they all said that with Herceptin we can likely do just as well as those who are HER2-. .I've only completed #3 of 12 treatments so there are others here with much more experience and knowledge who can help you a lot. BUT I do know you can do this.. please breathe... and remember you are not alone.

As far as your GI concerns, I, too, have another issue that I'm really worried about in terms of the effects of chemo. I was scared that my concerns would be lost on the Oncs because their primary concern is to keep cancer at bay. However, I've found that if you advocate for yourself and keep your concerns in the forefront they will do whatever they can to make you happy and feel safe- whether that's changing the drugs or the timelines,etc. They truly want you to be comfortable so you can complete your protocol.

Hugs to you. Take good care.

Thanks all. Knowing you all are here and going through the same nerves is very helpful. I also posted this w/my friends on Lumpectomy Lounge, but wanted to share what my chemo treatment, etc. will be. FIVE MONTHS OF CHEMO!? Is that normal? That seems super long to me!?

I adore the cancer center so far - not sure how/what I feel about the MO. Dare I say he seems super super old? lol. As long as he is trendy on his treatment, I don't care about his age I guess. So my 1.5 mass was Her2-, but the 1.6 mass was Her2+...go figure. But irregardless, they treat me as triple positive anyway. They found it out via the IHC test (ImmunoHistoChemistry). Do I add something in my signature dx with this? I see several have FISH noted...but I was 3+ on my IHC, so no need to do the FISH test they said. They also said the Her2+ is only in about 20% of breast cancers. great.

• blood test, EKG, and port within the next week or so. Once blood and EKG is clear and port is ready, chemo begins.
• Chemo treatment, Adriomicine & Cytoxin (AC) - once every 2 weeks for 4 sessions.
• Chemo treatment, Taxol - once a week for 12 weeks
• Perjeta & Herceptin start with the Taxol - but once every 3 weeks. Perjeta is only 4 sessions, Herceptin is for a year.
• So basically, chemo for 5 months!
• Once chemo is all done - then radiation and hormone treatment (Tamoxifen)

Kdtheatre - I don't know if these words will help - I hope they do. Your team is there for you - the onco team wants and needs to know how you are doing, challenges, concerns - they will work with you - so don't hold back. I wish I could say you won't have anxious moments again as you progress thru your treatment - it's all new and foreign - it's normal to have anxious moments - but there again, I say to share that with your team - they are truly there to help you. I would also suggest you have activities that help bring peace to you and keep with them as best as you can - yoga, meditation, curling up with the family pet, coloring books - whatever works for you.

Yes, I did AC + T before surgery. Others like Nancy2581 and maidentiredofwaiting have had AC + T after surgery. Some of the other members here did TCH (and sometimes P) after surgery. It's six infusions every other week I believe, so that's more like three months.

kdtheatre - yes same treatment here, only I had 12x Taxol + 4x Herceptin & Perjeta every three weeks FIRST, then the 4x AC every other week, now back on the Herceptin through Feb 2017. Just finished 28x radiation. It is long, I won't lie. But it goes by. Also, I had a lumpecotmy before chemo, and a re-excision after chemo. Despite needing the second surgery, I'm glad in hindsight because they could see that the treatments did their job, I had ugly margins the first time. I would have needed two surgeries no matter what, they initially thought it was a 7mm tumor despite 5 rounds of imaging. So technically, I had surgery first, but it changed my path report. I also worked, just not on treatment days since I had to drive to Boston. While taking the steroids I was extremely productive.

You'll be ok. I found the weekly Taxol very tolerable. AC was harder for me, but then again, I just had three months of chemo, so you are going in nice strong. Once you get over that round of AC those 12 weeks will go by fast you'll see. Also bring a friend if you can, that was the best thing I did during chemo. People wanted to know what they could do, so I had them come with me, we started looking forward to Thursdays.

It will be ok.

kdtheatre,

I think they're assuming that since none of your nodes tested positive for cancer, that there is a very good chance that it hasn't spread elsewhere. So, they're assuming that mammograms will show that your localized cancer is gone and hasn't recurred.

They typically only do PET scans for people with big tumors (5 cm+) and/or nodal involvement.

Kdtheatre - Welcome to the group. I had a similar journey as you have had. I was diagosed April 2015 IDC stage IIA. My initial biopsy was ER/PR+ HER2- I did neoadjuvant Chemo 4 rounds - Adrimycin/Cytoxin and 4 rounds of Taxol (before surgery) then biopsy of tumor after surgery showed I was HER2+ and got the news that I needed to do a year of Herceptin, every 3 weeks. I also had to do 33 rounds of chemo because I had 3 lymph nodes removed that were positive. I will be done with Herceptin in November. I am also on Tamoxifen and my only SE that I've had is the leg cramps (if I don't elevate my legs at night) and my nails are constantly splitting.

Has anyone else had nail problems? What have you used to strengthen your nails? I have one nail that split past my nail bed. I don't like showing my hands to anyone because they look horrible.

lago - how are you? Congrats on your 6 years!! I hope to make it there as well. My 1 year is coming up in October.

Zoziana - thank you SO much for that post. Super helpful! How come you didn't do A-C and just did Taxol? I am jealous! I wonder why I am able to get the Perjeta! I made an appt to see my GI next week - so hoping he can look over all the drugs/meds and tell me how best to prepare my gut. Will def get the GI Sustain you mentioned and probiotics! Do you use the medical cannabis on the day of your chemo treatment or day 2? Is it a pill format?

kdtheatre - I have seen false neg Her2+, but not a false pos. Keep in mind a negative Her2 result can be at anything under 2+, not necessarily at zero, so it is also possible that the areas of the tumor sampled at biopsy were low expressing, or just under the equivocal mark, and werecalled negative. I am guessing your Perjeta approval is due to being multi-focal.

Ktpittston

I have no experience with it and although legalized for medical use in New York it is not easy to obtain. Will be asking my new MO for a script this month. Let's see.

This from a well respected oncologist: Dr James Salwitz

http://sunriserounds.com/medical-marijuana-and-pai...

Kdtheatre- I was originally diagnosed with HER2+ (FISH) and was trying to get into a trial. They retested some samples for the trial and found them to be HER2-. My oncologist said this is more common than is often found that tumors are multi-expressive. I did my chemotherapy neoadjuvantly and had a mixed response to Herceptin, Taxotere and Perjeta. I then did AC which has been extremely effective. I will still get Herceptin for a year as if I am HER2+. But with these mixed tumors, there is just not enough data on the "right" protocol. My oncologist did some MRI's during my treatment in order to see what my response was and charted the course as we went. I actually had an easier time on the AC than I did on THP (even though it was second.) I also knew that I had a positive node (or more) from biopsy so chemo was a given for me either way. I still have surgery upcoming, so we will see what the true chemo response was after that. My oncologist feels that these mixed type tumors should be treated as HER2+ (I go to Dana Farber and its been reviewed by the tumor board there, so I feel pretty good about that approach.) Although if it would make you feel more confident, you can certainly get a second opinion just on your pathology. But my oncologist indicated that depending on how many samples they retest, it may come back one way or the other, but a false positive is usually not the outcome for Her2. Good luck!

kdTheatre: Glad to have helped a bit. Agree with Special K that Perjeta was approved for you because you have two tumors (multi-focal), so even though each is smaller than 2.0, it's typically approved in that situation from what I understand. I think no AC was recommended because of several reasons including that the tumor was still considered small (as under 2), there was no node involvement (though 5 nodes were removed because I had lots of sentinel nodes, as about 10% of people do), it was not necessary to try to shrink the tumors pre-surgery because I was having a BMX regardless due to the family/genetic history, etc. But many do have AC and the Taxol/Herceptin/Perjeta combo. This is why you may want a second opinion: to feel more comfortable with your treatment plan. I was really glad I got a second opinion, which agreed with the plan of TH for me, but also agreed Perjeta could be used, but I simply couldn't get approval and could not pay for it myself (very expensive, still under protected patent drug.) The second opinion--as for my first--thought I should be fine with just the TH, and I'm okay with that now too. Also, suggestion for GI and chemo: invest in big supply of good baby/bathroom wipes. Many have irritating chemicals and skin can get more sensitive in chemo. I like Kinder By Nature brand. I have found them only on Amazon and they aren't cheap, but they are the only ones I can use on a daily basis (and sometimes many times a day during chemo) without developing a rash. (They are imported from Ireland and work well for baby Irish skin like I have!)

Also, agree with Special K (though not as long experienced as she is on this site etc.) that I have not come across any info that suggests there can be a false positive for Her2 positivity and agree with the reasons set forth.

Ktpittston: I had the same experience as KateB79 with medical cannabis, and also used a high CBD oil which was non-psychoactive. I also found medical cannabis helped me with nausea, mild pain, fatigue, anxiety, and insomnia. I also used a THCa oil (also non-psychoactive--this is different than "regular" THC which is the psychoactive component.) I do recommend that if one uses these products that you find a knowledgeable medical professional who is familiar and experienced with not only cannabis but actually oncology, too. Often, folks don't use medical cannabis until later stages of cancer, but recent controlled, mainstream medical studies in Israel and Spain, show it has a very positive effect on actually lessening breast cancer tumor growth etc....but the dosages for that would be different than for managing chemo symptoms and pain. The way the cannabis products are composed--the percentages in each oil, etc. , are important, it's important that a top level manufacturer of the product be found (some are carefully produced in pharmaceutical production and tested by independent labs, and others are more like mixed in a washtub in someone's garage...well, not quite, but you get the idea). A good cannabis MD or Oncology RN can help recommend manufacturers and vendors. (Obviously, if one is in a state where med. cannabis is not legal, using this is probably not a good idea.) I am very grateful it is legal where I live, as it helped a lot. I didn't use it the first 3 weeks of chemo, and when I did (it took a week to build up to the dosage I needed), my "chemo life" improved dramatically and I felt overall much better. Also, I do not like to feel tipsy or "high" or anything like that, and these products did not in any way make me feel that way. I noticed nothing at all except alleviation of the problem symptoms and generally feeling better. And, obviously, you should let your MO know about everything you take, including cannabis products. Mine was fine with it and could have recommended it (and does for later stage patients) but I had already consulted and used someone outside my medical system (more personalized time and attention; I am in a large HMO-type organization), so I just told them my plan and what I was doing.

kdtheatre, I was fortunate because my primary care doctor was willing to write me the prescription. Increasingly, legitimate doctors are coming around to the idea of medical marijuana--among other responses, my MO was fine with it as long as I didn't smoke it--so you might have some luck, there.

The CBD tincture helped me with nausea, anxiety, and the inability to relax I experienced on Decadron (the steroid they had me take for three days with each infusion). I agree with what others have said about asking at your local dispensary--they typically give good advice.

I had a bilateral mastectomy, only I did them one at a time (the cancery one came off last July, followed by her innocent sibling in December). In between the two, I got six rounds of TCHP, and then after the second surgery enough additional Herceptin infusions to get me to a year and 30 rounds of chest-wall rads.

For what it's worth, I was approved for Perjeta after surgery because I had high-grade multifocal disease. My insurance company didn't even bat an eye.

Edited to add this: my experience was that the time leading up to starting chemo was almost unbearable. Once things got started, though, and I knew what to expect, life became easier. You can do this.

kdtheatre - I was diagnosed in March 2016 and had a BMX in April. They thought it was just DCIS but after the surgery we discovered it was invasive and I was triple positive. I wasn't prepared for chemo so I had lot of emotions, fear being the big one. These discussion boards have been so helpful. They put a lot of my fears at ease. I stayed off google because it was to much info and I found this site to be a reliable source.You might want to check out the discussion board titled "anyone stating chemo in June " - I know it's not June anymore but that's one of the discussion boards I'm on and I would recommend starting on page 1 and reading it like a book . It will give you some good information on what to expect with chemo and some of the experiences the ladies have had with chemo . Look for a discussion board for those starting chemo in September .

I have had four treatments of Taxotere, Carboplatin and Herceptin. I have two more treatments to go and I'm done with chemo but I will continue with herceptin for a year. I will also have five weeks of radiation and then some type of hormone therapy depending on my menopause status. Right now the chemo has stopped my periods. We'll see if they start back up after !

My biggest SE with chemo has been fatigue. I've been running a little anemic so my doctor has encouraged me to eat lots of iron rich foods and green leafy vegetables. My nausea is controlled with the medication my MO has provided me, Ativan seems to work the best. I think everyone reacts differently to their chemo to their regimen. Keep your MO posted on all your SEs so they can help you manage them. I know it all seems scary but you will get through it.

I'm also from Michigan. I live in St. Clair Township but I receive my treatment in Macomb Township. If you have any questions PM me.