TRIPLE POSITIVE GROUP

momallthetime

It's still very interesting to see that so many ladies opt for mastectomies. In reading Dr Google about studies, and speaking to 3 different BS in NY, they tend to lean towards breast conservation. They say it's an old fashioned thought about the mastectomies. They say it's not proven that it actually makes a difference in longetivity or metastasis. Of course, let's be cautious here, and I didn't think they meant it or neither am I thinking this is the same process across the board. Everyone has their stories.

My daughter was very young, and they really pushed us not to do it. I will never know if it did matter. She did have a very aggressive grade and Oncotype and the whole thing, age, and all from the get go. I do always wonder. Best of luck on such difficult decision.

kae_md99

did you guys get PET/CT even if MRI showed no node involvement? or did you get it because MRI or ultrasound showed node involvement? my MRI showed no chest wall, no nipple, no node involvement.2 ultrasounds done also showed clear nodes. my BS and PS both think i don't need PET/CT plus they are sure that insurance will deny it based on my MRI. we did get an approval for CT scan of pelvis, abdomen and thorax because of a pelvic cyst that is benign ( endometriosis). results were clear. i still wonder abut it sometimes, it would have been great if i got one. i thought about paying for it buy it is very expensive (1400 usd). i wonder if insurance will approve it as a once a year thing after i have done my chemo and surgery to check for recurrence... thanks so much.

ElaineTherese

Kae,

I got a PET scan after the ultrasound and MRI showed that one node was compromised. Also, the MRI suggested that my tumor might have had a satellite tumor, and that my lump was bigger than it appeared on my ultrasound. Yes, insurance companies are not too enthusiastic about paying for PET scans, so yours may very well refuse to pay for one.

One problem with PET scans are that they produce lots of false positives which can lead to unnecessary worry and more scans. Three PET scans showed something on my left femoral neck (hip). MO didn't THINK it was a met, but I nevertheless had to have a CT scan and an MRI. Neither of them showed anything going on with my hip, so MO considers it to be a false positive.

Since then, I have had no more PET scans to check for recurrence. I just go for mammograms every six months to check for a local recurrence.

kae_md99

thanks as always Elaine..

Teriad

Hi This is my first time posting and would like some advice/input. I was diagnosed with idc in my right breast in August. I was told that I had a grade 3 tumor and was triple positive. After the mri showed some enlarged lymph nodes they opted to do a biopsy on one of the nodes. It was negative so I did not have the sentinel node biopsy that they originally scheduled. My oncologist had me do neoadjunct therapy. Fast forward I finished my 6 cycles of chemo (carboplatin,taxotere,herceptin and perjeta) in January. I'm 3 weeks post op from surgery. I had a lumpectomy with a reduction and 12 lymph nodes removed. Pathology came back NED. I saw my oncologist today for my first followup with him since my surgery. He was very happy with the results. I start radiation in 2 weeks and will stay on herceptin until October. I originally was told I would have hormonal therapy after I finished with the herceptin. Today my oncologist didn't feel that it would be necessary since I got such positive results after surgery and chemo. I'm not strongly er+/pr+. I also had a hysterectomy 3 years ago. My question is do most women take the hormones for the er/pr? Does the her2+ have anything do do with taking the hormone therapy. I know how thrilled I should be with my tests results but I'm terrified of recurrence. I want them to hit me with everything because I want to lessen my chances of having to go through this again. I know there are no guarantees. The Dr thinks they risks of taking the pills might not outweigh the benefits. So I guess I'd like anybody's opinion who have been through this. He told me if I felt that strongly he would put me on them. I'm afraid to make the wrong decision. Are there many side effects. Also did anyone have extreme itching on their arm from the herceptin? It's unbearable. I've tried everything and it doesn't help. I was just prescribed gabapentin to take. I hoping it helps I can't sleep at night it gets so bad. Thanks for listening to my long winded post.

dx 8/16 idc right 2.7cm grade 3 triple +

chemo-carboplatin,taxotere,herceptin and perjeta

surgery- lumpectomy 12 nodes removed

targeted therapy-(herceptin every 3 wks)

Suburbs

Hi teriad. Welcome. I am getting ready for TCHP round 3 of 6. I had an MRI from which a suspicious node was deemed ok prior to round 1. Since then I have had no PET or CT scans but would like to at some point before surgery just because I need to sleep at night.

I have that same rash you describe though thankfully it has remained in my arms as initially my face and trunk were involved and that was not fun. Steroids are keeping it under control and keeping me sleepless and anxiety ridden. I was told that the rash was from the Perjeta, not the Herceptin. If it is the Herceptin then I am in for a world of hurt and this year will be even more interesting. I hope yours resolves or a least lessens over time. I am also taking Allegra and sometimes using topical cortisone as well as Benadryl cream and spray when the itch is really bad.

Question for you and the group... after infusion 6 of TCHP, how long did you have to wait for surgery? I do worry about healing after taking steroids. Without them, I could not tolerate this protocol.

ElaineTherese

Teriad,

You say that you're not strongly ER+/PR+ -- how weak is weak? I WAS strongly ER+/PR+ (95% for both), so I am doing hormonal therapy. No, hormonal therapy is unrelated to HER2+.

What kind of hormonal therapy was your MO thinking about for you? I'm doing an AI (Aromasin); many women complain about the side effects, though I find them mild.

Suburbs,

The doctors usually want you to wait about 4-6 weeks after chemo before surgery so your body can heal. I finished chemo in December 2014 and had surgery in early January 2015,

Tunegrrl

Teriad, there is a detailed article i came across reviewing the state of knowledge about triple positive breast cancer. Seriously deep, but satisfying if you want to dive in: http://www.sciencedirect.com/science/article/pii/S...

Since you are very motivated to do everything you can to prevent recurrance, you might also enjoy the best nutrition resource i've found. It is the ****Ultimate**** nutrition guide for breast cancer gals. Reads like a naturopath's hymn sheet. 92 detailed pages of evidence-based goodness. Even includes differentiation by immunohistochemistry: http://cancer.ucsf.edu/_docs/crc/nutrition_breast....

Congrats on the pCR! That is rad.

Herceptin is the easiest part of triple-positive breast cancer treatment, in my experience. Only side effect for most people is an occasionally runny nose. When i go to the chemo treatment unit for my herceptin infusion, it is almost like a spa treatment. I just sit there and gloat that i've conquered chemo already. Being only mildly HR+, the herceptin treatment is even more effective (and more important) for you than it is for strongly HR+ gals like me. It is a great time to be alive. Best of luck.

bcbarbie10

Hi all! Just dropping by after a long while to tell everyone that I am five years NED today! This group kept me sane and informed through that turbulent first year and I know it still does that to a whole lot of us to this date. Thank you for being a part of my recovery! All of you knowledgeable ladies keep up the good work

Suburbs

Tunegrrl, great links. The nutrition guide is getting paper treatment. This will be my BFF for some time. Between your input and that of Specialk, we could have an excellent triple positive ask the patient q and a forum, like Hopkins does with medical professional volunteers.

ElaineThere, thanks for some perspective on pet scans. We all know every test has some limitation and expensive tests are always going to be a more difficult road. I keep thinking about breakthroughs in diagnostics and have to imagine that patients insisting on more and better are part of moving standards forward. So everyone who fights for a test is in a small way fighting for the next person in line.

Bcbarbie10, bravo and thanks for stopping by. Your feedback helps. Continued PCR and NED foreverer!

shelabela

I have gotten the results of my ECO that I had. I guess I have a heart murmur and a bicuspid valve. My blood pressure had been 113/65 for years, now after starting Herceptin it stays at about 185/100. 😔 So I get to add a blood pressure med to mix up cocktail of Morning Meds. I also go from having an ECO every 3 months to monthly! And I was sent home with a Blood pressure cuff to take my BP daily.

Ladies I am seriously getting overwhelmed!

wabals

Shelabela my bp and pulse were high on treatment too. Was put on a beta blocker and it came down. It returned to normal after treatment

deni1661

Hi teriad, welcome! I am 6 months into a clinical trial with Herceptin and Perjeta only; cancer is no longer visible on MRI. I have not experienced side effects from either. I take Arimidix daily, side effects include fatigue, hair thinning, dry skin, constant runny nose and muscle/joint pain. All annoying but tolerable. I asked my MO if I really needed to be on hormonal therapy for full 5 years considering the great results from HP. He felt hormonal therapy was critical to avoiding recurrence and said stopping Arimidix would not be a good idea. My assumption is the need for hormonal therapy is based on stage, grade, etc. I have the same desire as you to hit this hard and do everything possible now to avoid recurrence. I agree with tunegrrl that nutrition should be part of the prevention plan. I wish you the best in making a decision that's right for you.

Thanks tunegrrl for the helpful links, I'm going to check them out!

deni1661

shelabela- I'm sorry to hear about your heart issues! My blood pressure has been slowing going up as well but so far ECO has been ok. Sending up prayers that you don't experience additional side effects. Take care

deni1661

congrats bcbarbie10 - thanks for sharing your awesome news! It gives us all hope that we too will reach the same milestone

Suburbs

Are there any neoadjuvant TCHP for 6 cyclers then H for a year out there who could please comment on when your hair returned after infusion 6?

Kicking myself on not trying the cold caps. Seemed like not a big deal in the grand scheme of things initially.

If I had my hair I think I could at least feel somewhat normal. It's the only time I cry, when I look in the mirror.

It's not lost on me that beating the cancer is more important but my emotions are really no longer my own. They are now like a hail storm fueled by drugs to kill the side effects of the drugs to kill the cancer.

cjs9473

Suburbs, my doctor reduced my TC a little after my third treatment because I was having a lot of issues with diarrhea. I just completed my 6th treatment last week. I've noticed that my hair is already starting to come in quicker. My husband notices too. The hair that I have is about an inch long but baby fine. I'm hoping that I start getting more coverage. I'm hoping that I will be comfortable to be without my wig in two months or so.

SpecialK

suburbs - the hair return would be the same for either neo or adjuvant, so I am linking the member lago's hair timeline for you (she was TCH, No P) - the dates are in the corner of each picture. Look for her post on Dec. 19, then click the link in her post.

https://community.breastcancer.org/forum/69/topics/707348?page=591#post_3343807

My hair came back slowly initially but I ditched my wig at 13 weeks PFC.

kae_md99

hi all, you probably know about my insurance issues. well, it has been agreed that i go to the hospital for chemo. yesterday, my admission was denied. apparently it was not a medical necessity according to my medical group.( i have HMO). so my MO decided to admit me thru ER which took 3 hours. got up in my room at 6 pm. i did not have chemo as originally scheduled ( there is no more pharmacist capable to mix the drugs, that is the reason they told me).. so now i am gonna get it today, 1 day late. my MO mentioned that if its gonna be like this all the time, being denied always, she might just decide to do surgery on me. i cried when she said this. i want to finish the TCHP x 6. i think it is very promising in my case because after first treatment, i could hardly feel my lump anymore so it is most likely shrinking the tumor ( my Mo said the same thing when she examined me yesterday). this is all frustrating for me. i cried and cried yesterday. i cried again when my MO said that worse case scenario is cutting short neoadjuvant chemo and proceed with surgery ( she did say, she was just thinking of the next step should this denial happens again).. i am just so frustrated. i want to get my complete treatment then surgery then 12 more Herceptin as originally planned.my BP went up to 170/100 because of all the stress.i am just so tired of fighting the insurance.i am now in contact with my husband's Human Resources as i get my insurance from his work. and i was told that the broker is already involved and some higher ups.as a backround, i am not allowed to go to the infusion center because they "buy and bill" the chemo drugs as what other infusion centers do and my specialty pharmacy is not willing to do that ( they want to get the drugs themselves because of course they do get discounts).. i hope being one day late wont be a big deal for me...thank you for listening..

ElaineTherese

Oh kae....

How frustrating for you! No, being one day late is not a big deal. You're fine in that regard.

I really don't understand your DH's HMO. This is CANCER. It is aggressive, HER2+ cancer that is often treated neoadjuvantly. Your protocol is very common and follows national guidelines! It's not like you're asking for some untested, experimental protocol.

In any case, I hope your infusion goes well today, and that you are able to get things straightened out with the insurance company. But, just for today, focus on YOU and getting your infusion.

((Hugs))

ElaineTherese

My problems pale compared to Kae's, but I just wanted to vent.

My MO's office and infusion center are snake-bit. It is a satellite office of a bigger cancer center in the city, and serves my town and many rural towns nearby. About six months ago, the maintenance staff discovered mold in the office building, and the office moved to a new place. It was crowded and not as comfy as the original office, but the office staff made it work. Well, last weekend, pipes burst on the third floor of the new building, and the entire building was ruined (MO's office was on the second floor so it got a direct hit). So, this week, I had my appointment at the central hospital, about 45 minutes from where I live.

Now, I've just read in the newspaper that "some" of the clinic's doctors have resigned from the non-profit corporation that runs the office and the bigger cancer center. The article doesn't name names, but I'm praying that my doctor is still in the system and hopes to re-open an office in my town. I originally went to my MO because her office was covered by insurance and was close to my home. But, now I've developed a relationship with her and her staff, and I'd hate to have to find a new MO. I know it sounds crazy to care so much about a medical professional, but she has seen me through some of the worst months of my life. I thought she'd always be with me. Sigh.

kae_md99

Elaine, i know what you mean.. i have been with my MO for 2 cycles and i feel comfortable with her already ( we have been thru a lot and she always try her best to get my infusions on time despite my insurance issues). i also like her staff.well, there is one who does not return my calls but she is only the "bad" one so far.. plus my MO and BS are under the same center so its a one stop shop for me.i hope your MO stays..

Taco1946

KAE, Every time I write a letter to my members of Congress about healthcare, I think of you. Given that it's so hard for many to get what they need now, what will it be like in 4 years? Wish I could be your fairy godmother and fix it for you.

kae_md99

Thanks Taco. i will appeal to my DHs HR this coming Monday. i hope i can get into the infusion center because apart from 4 more TCHP after today, i will still get Herceptin for a long time and i don't think i can do this anymore..the stress of worrying if i get authorized for an admission is too much and stress and anxiety might be the downfall of me.. it would be nice if i could just take care of my 8 y/o twins and go to the infusion center when its time and not to worry about something else that insurance is supposed to provide for me.

Suburbs

kae, thinking of you and understanding your reaction completely. It is harrowing to face the treatments let alone an administrative melt down. Your doctor sounds like a problem solver and very determined. For what it's worth. https://www.genentech-access.com/ The drug company has a patient access line for perjeta with a weekday call in number. Perhaps someone on your medical team could apppeal directly to the drug company as it relates to perjeta. Just a thought and ouch, another step which just is daunting.

On the neulasta/WBC issue, yes, before infusion, the standard pre chemo blood panels are conducted. My infusions don't happen unless my counts are good. So far, I have been ok. 5.7. I'm doing what I can to help the chemo work and protect my health - treadmill and organic whole food. Like everything, the rest is out of my hands.

Triple positive. Fasten your seat belt. Fighting.

kae_md99

wow Suburbs you are really good with your WBC count after 2 cycles!

Jumpship

Just want to report that I made my "little" girl's dream happened. I took an extra job to make some money, found 26 hours off of work, picked up the little one and her sister Thursday at lunch and drove to Disney. They were totally shocked. I had enough energy for the drive and the 12 hours at the park. I sat down once at the parade and had trouble getting back up but that was it.

Of course today, two days later, my body hurts a lot. I'm drinking that spinach juice, vowing to eat better and hoping that this fatigue that I had for more than 20 months, that left in January, will leave again soon.

It was good to see the girls laugh and enjoy the day.

kae_md99

Jumpship, that was a beautiful thing to do. i will pray that the fatigue will go away.God bless you.

shelabela

So to those on Herceptin.. Did your periods stop the whole time you were getting this? I had a period in January and a very light one the first week I had Chemo ( had Herceptin, Prejeta and Taxol) And have been very regular and so far this month I have not had one or cramps of any kind. Just wondering, The MO said I may have one or I may not. They were not much help there.

Thanks

TizzyLish

I had a period the day of my first chemo and didn't have another one again. I had a hysterectomy three months after I finished chemo, while still on Herceptin, and my period had not returned. I think the docs really don't know if it will come back or not.

Edited to add that I was 43 when I started chemo. Whether or not your period returns may depend a lot on your age.