TRIPLE POSITIVE GROUP

BucsGirl

Vicky,

Congratulations of your last Herceptin treatment! I still have 3 more to go. I'm counting the days.

That's interesting about the Nerlynx. I'm not sure I'd want all those side effects either for such a small percentage.

Thanks for that info!

coachvicky

Thank you TampaBBGirl

I never thought the end would come!

Vick

coachvicky

Thank you deni166.

WOW 99.3 is awesome.

Vicky

BucsGirl

I hear you loud and clear. It has been a very long journey.

The odds are in your favor based on your non recurrence number. Thank goodness! Have a Happy Monday!

Jumpship

I was told Mammaprint wasn't for triple positives. Maybe it's just my doctor

Tresjoli2

having a bit of a pity party for myself tonight. I have had three goals since my treatment. 1) keep the cancer from coming back 2) lose the huge amount of weight I gained during treatment 3) deal with some worsening depression. The problem is these goals conflict! Lupron causes depression and weight gain. Tamoxifen prevents me from taking most anti depressants and weight loss medications. I stop Lupron, which improves my joint pain and migraines, but prevents me from switching to an AI so I can find an antidepressant. ( Effexor and celexa were awful). And never mind the vaginal atrophy at 42! Ahhhhhhhhhh

Ok. Vent over. Pity party finished. I just needed a moment with those who would understand.

Love to all!

SpecialK

OncotypeDx is definitely not for TP patients, but Mammaprint includes identification of both Luminal B and ERBB2 (Her2+) molecular subtypes, so it is appropriate for TP. In fact, not all who test positive for Her2 are ERBB2, some are indeed Luminal B, and Mammaprint has delineated this with the type of assay done. There is some thought that those who test as Luminal B benefit from the addition of neoadjuvent Perjeta

shelabela

Yay Coach Vicky! So exciting your done with herceptin!

ElaineTherese

Tres,

I'm trying to lose weight, too, and it's hard because Aromasin has made my insomnia worse. So, I'm thinking about Ambien. Plus, Aromasin + Zoladex has given me full-blown osteoporosis, so I now have to take Fosamax. Ugh. Cancer is truly the gift that keeps on giving!

Hope your situation improves soon!

SpecialK

hap - it is a combo of receptors, her2 status, tumor size/nodal status, and sometimes age, that determine the systemic treatment recommendations with Her2+. Microinvasion, usually not - and less then .5cm (5mm) is a judgement call. Anything 6mm or above usually gets a recommendation for chemo and Herceptin. 2cm and larger, or smaller but node positive, will get all that plus Perjeta. Many oncologists don't use assays for Her2+ patients because chemo and targeted therapies are somewhat foregone conclusions - you are correct. I had Mammaprint testing way back in 2010, but that was because my oncological breast surgeon was participating in a study with Agendia, and it was a biopsy sample that was sent in to them, and that the assay was performed on. I'm not sure if he had known ahead of time that I was Her2+ if he would have sent it. I had a 2.6cm tumor with two positive nodes so I was definitely doing chemo and Herceptin regardless. OncotypeDx is not appropriate for known Her2+ patients, so you don't see done for TP

kae_md99

Elaine Therese,

what is the difference between prolia and fosamax ?i ask because i am already osteopenic based on baseline dexa scan and i will be doing zoladex plus AI. i wonder if i could start on something already... thanks

ElaineTherese

kae,

Fosamax is a biophophosonate, whereas Prolia is amonoclonal antibody. (Monoclonal antibodies are made to target and destroy only certain cells in the body.) My insurance company will only pay for Prolia if Fosamax doesn't work. Unfortunately, my insurance company only pays for a dexascan every two years.

kae_md99

thanks Elaine!

LTWJ

ok, just found this group, I've been posting on the started chemo 6/17 group, I need some advice or any help. I had my 4/6 tchp a week ago last Friday. I have experienced bad diarrhea this cycle, bad enough that I'm not eating either. On 3/6 cycle my onc gave me Zyprexa to help with nausea. It worked great and I actually had 2 weeks of feeling really good. At my 4/6 chemo I took tne Zyprexa that morning. Just before they started my chemo I got really groggy and started slurring everything. They got my onc and he said we had to discontinue to Zyprexa and throw I think out. I had crazy antsy legs during my chemo but it all wore off. But i have had extreme nausea and diarrhea with this cycle now. I have been taking lomtil 2x a day since day 1 of chemo but this cycle I'm up to 4x a day. My precsip says only 2 a day but I just read to take 2 at a time at first so I just tried that now, we'll see how long it lasts. No matter what I do, brat diet, anything, it's diarrhea, these pills just give me a few hours of not having to run. I'm very weak right now because eating is awful- texture and taste are so bad. I tried an ensure this morning but then those make the diarrhea much worse. My husband wants to look in cb oil? Or whatever that is. Anyone have any other solutions or things they've tried? I bought ginger bites but they burned my mouth and the diarrhea seemed to be worse. I've had through every cycle 1 bad week, 1 ok week and the third feeling pretty good. Now I just want to stay in bed and I keep telling my husband wake me on Oct 1! Thank you for any help 😊

Suburbs

Hi LTWJ. TCHP can be brutal. You might consider having your MO provide IV fluids a few times before your next infusion. For infusion 6, Benadryl predose helped me greatly. For some, Benadryl predose is standard.

I was completely wiped out after infusions 5 and 6. I moved from the couch to the bed for 6 weeks and stopped working. What you describe could be considered normal. Everyone is different. The cumulative effect can can be debilitating.

October is just around the corner. Hang in there.

Gigilala

LTWJ: I had same chemo TCHP and I had a bad diarrhea TCHP is very hard

Call your doctor and ask for fluids

Good luck

deni1661

Tres, I'm so sorry you're going through a tough time. You are entitled to vent as we all are! I agree with Hapb, quality of life is very important and your MO should be offering solutions to offset the SEs. It may take some experimenting to get the right combo so hang in there. My MO has me see the naturopath for SEs - I'm taking Bosswilla for pain and Curcumin for inflammation (helping somewhat), I take L-Lysine for stress, and vitamin D to build up my immune system. He suggested I drink a shot of wheatgrass around noon to help with fatigue. I'm still playing around with that one. Coconut oil works really well on the lady parts. I also use it on my extremely brittle hair and it's been helping to reduce breakage. Losing/maintaining weight is a tough one; I struggle with that too. I know it sounds weird but the way I'm able to stick with a mostly plant based diet is I tell myself "that food will make my cancer grow". I am literally afraid to eat certain foods especially sugar, alcohol and dairy. I do allow myself treat days but I feel yucky after eating those foods because my body is used to the healthy stuff.

I wish you the best in finding solutions that make the SEs more tolerable. Take care

deni1661

Thanks specialk for the explanation on the Mamma and Onco tests; I never did have a good understanding. My MO uses Mammaprint to determine whether chemo would benefit his patients. He is unique in that regard because he doesn't automatically offer chemo for all his HER2pos patients but instead does the Mammaprint and offers several options based on results. The Mammaprint test was required as part of the clinical trial

My hometown MO offered standard of care and when I asked about taking the Onco test she said it wasn't necessary and dismissed me. She gave me one course of treatment and wouldn't even discuss alternatives which is why I went for a second opinion.

Juli24

LTWJ, I had the same horrible diarrhea and inability to eat with TCHP. Doc tried everything. Finally went to a double dose of Lomotil to begin, 4 hours later 2 Imodium next dose was the Lomotil & if needed returning to the Imodium. Granted, this was an army of treatment which only made the symptom tolerable but much better than they were. The day after chemo I went in for a Neulasta shot along with a fluid IV. Two days later another bag of fluids. This was so enormously helpful I just cannot tell you. The trick for me was to not give up & to keep trying. I ate whatever I could get down regardless of whether it was good for me. Sometimes it was a Lara bar and Fritos....anything to get something in my stomach. I learned soup with chicken in it went down ok. Things I used to love turned my stomach but I just kept trying. Keep asking your onc what else you can try and experiment with foods. Don't worry about what you eat - you can improve your diet when this part of treatment is over - if a donut sounds like something you can tolerate I say eat it!! By no means is my formula right for everyone except the "keep trying" part. Good luck to you & I will be praying for your comfort, julie

CCNC

LTWJ

I also had horrible diarrhea during treatment. I found cutting out all dairy products during chemo improved things tremendously. It was a complete fluke. I had watched the documentary forks over knives after my third treatment, which is what caused me to stop the dairy. I was very suprised the gastro issues improved to the point where I did not take a single immodium during the rest of the treatment. I think the ensure drinks contain dairy. It would be worth trying to see if it helps. Later I read that chemo can cause some people to become temporarily lactose intolerant. Hang in there.

LTWJ

Juli24, thanks for your help. I did take 2 lomitil at 2 today and I haven't had to go since then but I'm really dizzy. I keep drinking water and I'm calling tne dr in tne morning to get fluids and whatever. I've lost 20 lbs already since chemo started. Usually during my 3rd week I'm able to eat more so I put some weight back on. I'm sticking to the brat diet today but will try more tomorrow. I was eating spoonfuls of maple syrup earlier and it actually tasted good . I have found that any of tne boost or ensure drinks make the diarrhea worse so no more of those.

Lita19901

This was published back in March so you are all probably aware of it already, but just in case, here goes!

Shorter Herceptin Treatment Cheaper, Better for HER2-Positive Breast Cancer Patients

https://breastcancer-news.com/2017/03/06/shorter-herceptin-breast-cancer-treatment-may-produce-better-results/

sfar

Lita, thank you for sharing the study. I can't imagine how I missed it. It actually makes me feel slightly better due to the fact that I had to stop Herceptin after 8 treatments because of heart damage symptoms. I am not sure how I feel about the study being attached to government cost savings or drug companies profiting from our treatments (yikes). Both make me uncomfortable and suspicious.

I did recently receive $800 from the company that makes Herceptin to help with my out of pocket costs. If you haven't looked into the program, you should. My treatment center brought it to my attention and handled the paperwork.

Lita19901

sfar and Hap - I thought the article was an interesting potential piece of the puzzle, although I don't really expect it to alter standard of treatment here in the U.S.

I don't necessarily believe that studies are being manipulated to benefit pharmaceutical companies but I do find it so very, very frustrating that the data from studies is not being mined to the fullest degree.

sfar

HapB- It was part of a program called Genetech BioOncology Co-pay Card. I didn't fill out or sign anything. My oncology office financial person contacted me to tell me that it was available and would I like her to apply for me. I checked with my insurance company to make sure there were no issues with me accepting money. Genetech sent the check to the office and they applied it to my account. Unfortunately, I had just paid the bill so it took awhile, but eventually the doctor's office sent me a check.

My cardiologist has been treating me to get my LVEF back to the normal range. It dropped to 40% from 53%(which was low-normal to start) My oncologist put the Herceptin on hold for 6 weeks and it was not coming back. We waited another 6 weeks and it was slightly better, but she said she didn't want to take any more risks. I have been on heart meds and my cardiologist feels that things will be back to normal in September after an ECHO. If not I will have an MRI. Let's just keep our fingers crossed.

Taco1946

For all of you who are writing about the cost of drugs -

I recently got a second package of "stuff" from Genentech, the makers of herceptin. I wish they would lower the costs instead but both packages had some helpful information. The first was a cookbook - organized for symptoms or times of chemo cycle and the second more general info. (I think I got them in the wrong order but oh well.)

"Genentech Access Solutions" has two programs - one a co-pay card and the second a Care Foundation for people who don't have insurance or can't afford the co-pay. Info at 888-249-4918 or Genentech-Access.com/Herceptin.

A friend of mine also got help from a private foundation (wish I'd asked for more specifics before she died) for her drugs over a number of years. She heard about it from her MO. Worth asking yours if you need it. Or your nurse navigator might have the contact if she is better than mine.

Have to admit that I am inclined to get on my political soapbox when I read about those of you who have been denied the best treatment by insurance companies. Just got off the AI forum and there is concern about the cost of those drugs too.

coachvicky

All,

It is over. I rang the bell yesterday at Clearview Cancer Institute.

I am finished with infusion treatment. I cried a lot yesterday. It is such a relief to have this behind us. I say "us" because my husband has been by my side with each step. I know I am fortunate.

Just Arimidex left for 4 years, 8 months or 9 years, 8 months.

My Nurse Practitioner said she thought triple+ was the hardest because it took so long to finish. She asked if it felt like this year would go on and on and not end. I did not know how to answer, In some ways, I don't remember life before diagnosis. In other ways, it feels rushed as if it all started last week.

We talked about some other topics that I believe she will take forward in cancer care. Those topics included PTSD in 80% of BC patients, the need for a holistic approach (mind, body, spirit), the need for fitness / exercise / diet, the increased presence role of the Social Worker in early care and immediately after diagnosis, and how a bilateral mastectomy limits the body and takes a long time to recover. She seemed surprised that it has only been in the last couple of months I can empty the dishwasher and put 3 plates at a time over my head into a cabinet. My initial surgery was 12 July 2016 and reconstruction 20 January 2017. The February hysterectomy did limit my lifting for another 8 weeks.

I had sent her a copy of the prune study. She agreed with the findings and asked me if I could eat 10 prunes a day. I can get down 1 a day! LOL. She shared she tried 10 dates a day when she was pregnant. The thrilled lasted about 4 days for her.

Anyway, hang in there everyone. I never thought I could finish and I did. We are all stronger than we know!

Vicky

SpecialK

coachvicky - excellent!

ElaineTherese

Congrats, coachvicky! Your MO sounds like a keeper.

kae_md99

coach vicky,

what is the prune study?