TRIPLE POSITIVE GROUP

ashla

Kthielen

Kathy....

So sorry to read of the progression! Yes, truly..we are all in this together.

I wish you...and your family... great strength in dealing with the challenges this diagnosis brings.

I am a voracious reader and try to stay informed on all the latest medical news especially with regard to triple positive Breast cancer. I used to post the latest research but the new research and progress being made has just exploded in the past 2 years. Each clinical trial brings us a step closer to more personalized treatment for what they now know is a disease that even within the triple positive subgroup is very different individually.

Much love....

KateB79

lago, thanks for the speeches (again). They work. I still haven't won the lottery, either.

And yes, my doc has it right, and "you're okay until you're not okay" is my mantra. It really, really helps.

For those of you still in the throes, or just diagnosed: I'm six months out of chemo, and I'm getting my life back. Physically, I feel fine, other than the damned hot flashes and some residual tightness from chest-wall radiation. Psychologically, there's work to do. But doing that work pays off. I'm thinking of all of you. Cancer--and its treatments, which force medical professionals to walk a fine, fine line along "first, do no harm"--blows. There's no way around it; only through. Hang in there.

I see my MO this week, and I'm fairly certain she's going to want to shoot me with Lupron or Zoladex. I'm still on the fence. I read the SOFT study, and I'm not convinced that ovarian suppression is right for me. Anyone have thoughts on the matter? FWIW, I'm 37 and haven't had a period since my first TCHP infusion. There are no signs that my period is ever going to return, but my MO isn't a fan of hormone testing. Maybe I'll ask her to explain that one a bit more thoroughly, since I'm not a fan of giant needles and/or messing with my hormones more than we already have.

ElaineTherese

Kate,

I'm on Zoladex and Aromasin. But, I'm 11 years older than you, and I'm hoping that I will only be on Zoladex for a few years until menopause can be confirmed. Lupron is more convenient, as you get the shot less frequently.

I really don't mind the Zoladex shots and YES, the needles are BIG. I have all sorts of subcutaneous fat in some skin folds left over from a twin pregnancy. (No, after carrying 14 pounds of baby, my stomach never did just snap back.) I barely feel a thing. The nurses are all so apologetic; none of them really want to do it.

Side effects -- hard to distinguish them from the Aromasin. I got hot flashes and moodiness; I control the moodiness with Celexa, and the hot flashes have waned over the year of this regimen.

Do I think the OS + AI is worth it? I have no idea. I live very close to my MO, and every month, I get to say "Hi!" to my chemo nurses. I also get to say "Hi!" to MO's nurse and discuss my meds/prescription refills/overall health. So, I feel like I get mini-check-ups when I go in for my shots.

Good luck, making your decision!

Karenbo

Thanks for the sage advice Lago! Love it!!!

lago

Karenbo, KateB79 and others.

SpecialK I have been thinking of you, the surgery queen. I have no idea how you do it. You are one strong lady.

roziekat

I was diagnosed with mucinous breast cancer stage 1.her2 neu 3. 1 lymph node removed and clean. Lumpectomy with clean margins. Chemo scheduled docetaxel,carboplatin,trastuzumab. Then radiation.I keep reading that mucinous cancer is mostly her negitive....any help on this post will be appriciated...

fightergirl711

Sorry about your diagnosis roziekat. The tumor I had removed in December had mucinous features, yet it was grade 3 (not slow growing), and triple positive. My point is that it's possible.

Tresjoli2

KateB79 I am on lupron and tamoxifen. My MO thought it was really important that my body have no estrogen at all. I take the shot every three months. I'm still on tamoxifen because at 41, and having been on the pill for years, she thought the side effects of tamoxifen might be easier on me, and she was worried about bone loss on an AI. Honestly the one physical thing cancer gave me that I'm happy about is no more periods. Works for me!

SpecialK

lago - thanks for thinking of me! After a bit of a hurdle in the form of an allergic reaction, I am on the mend! So happy to have two of the same things in both sides of my chest for the first time in two years! Yay! Sadly, I'm in Maryland at the moment, funeral for an old friend, we were young military wives together, yup, another sister lost to this disease. So unfair.Flight was good - DH had to sherpa the bags. I'm being careful but needed to be here today.

Pdrchick

Roziekat - my tumor was mucinous as well and triple positive (grade 3).   It is unusual, but there are a few of us out there.  My treatment is the same as your except i'm also getting Perjeta.  Might want to ask your MO about it. It's new that it can be considered post surgery in cases that are have not metasticized and are not recurrent.   My doc was very excited to include it in my regime.  She had to battle the insurance company a little, but she got it approved.   Not sure how big your tumor was - I think it may need to be >2cms for Perjeta, but it certainly can't hurt to do some research and ask about it!  I'm halfway through my treatment - 3 down, 3 to go.  Feel free to PM me if you have any questions.   Good luck to you!

Konakona

SpecialK, is there a web where can I look for current clinical trials for her2I live in Europe, military wife😀

lago

Konakona not sure if this will help: https://www.clinicaltrialsregister.eu/ctr-search/s...

momallthetime

Special K I read about your scare! So glad you have good people lookg after you. Hope you are coming along.

Smlowry7 WOWOW what you went through. Some ppl might have just ignored it. Just so you know, my daughter was just mid 20's breastfeeding 2^nd baby, saw a nice size olive like thingy in her breast, went to GYNO and he refused to send her for a mammo, he said she was too young to have anything, did a sono in some office and believer it or not they said it's a fibroadenoma NO mammo, of course we took action, and as soon as we got this report which took like 10 days, we paid out of pocket to a private Radiologist, and in the same day saw a BS, and she had a lumpectomy by the end of the wk. And the rest is HX, unfortunately, after 2 yrs she got mets.

But, this business of denying that young ppl could have BC, is very real. UNBELIAVABLE.She had a oophorectomy after awhile, I understand you, she does have 2 children, but this estrogen business is tricky. Who knows?? Keep healthy. At least, they have so many more options than just a few yrs back. There is so much more for Triple Positive now.

Regarding having 2 types, all I know is that Dani is on Herceptin, Tykerb and Ibrance/Letrozole. Yep, bcs she was having much progression with all the HER2+TX even thou a bone biopsy and blood biopsy showed she is Her2+ after being dx yrs ago at the start with Er+PR+Her2-I will send you an interesting link, and something I learned from the good people in these threads, that Her2 has many pathways so it could get complicated, and certain tx close certain pathways.

https://www.youtube.com/watch?v=vS1mA2qvPe8

Ashla thx for the link to Dr. Salwitz, but I really liked someone Liz commenting. She was biting him. Ppl thought she is a bitch, I thought she was pretty much nailing it.

Fluff you know, before my daughter had METS I had a convo with a gal that had METS and she told me she came up with headaches or pain in the spine, so to be able to get PETs bcs her Onco did not do it enough. I did not understand at the time, but I think she was right on. She did what she had to. It's extremely emotionally stressful.

Everyone warm hugs, I have been so behind in all the threads, so much going on, and I like to go back to where I stopped, may not be such a good idea.

Konakona

thanks lago

NicoleIsASurvivor

I am way behind on this thread and can not find where I left off. Since my last post I have switched oncologist with the same outcome..so I have been trying to get in a totally different oncology center, but they do not accept my insurance. I have decided to stop the herceptin at my 8 month mark which will be my next treatment next Tuesday the 7th. My side effects on herceptin seem to be just as when I was on chemo, but a lil less severe. I can not continue with no help from my oncologist, even after switching. They say the have NEVER heard of these side effects. I find that hard to believe after doing my own research. I hope all of you are doing well. God bless each and everyone of you.

ashla

Babygurlwarren

Whoa! I've missed so many pages here and your whole story.

Finding a good medical team is of utmost importance. I would urge you to hang in there before quitting Herceptin until you have found a supportive MO. The side effects are different for everyone but thankfully most of us have found solutions that have helped us get through those difficult periods with the help of our doctors and nurses.

What are the side effects you are experiencing? Maybe someone here can give you some suggestions.

mltdd

Babygurlwarren - I've found that the MO only thinks about the SE that most of their patients experience, they forget about the small percentage of patients that experience uncommon (10-29%) SE. These boards and the nurses in the oncology departments have helped me. The nurses see patients everyday and have heard about all the SE. I've had the same experiences as you with herceptin, it was much easier than chemo, but I still had some of the same SE. My has told me repeatedly that herceptin would not cause neausa, insomnia, etc. I just refer her to the chemocare.com fact sheet that she gave me before I started treatment.

Songbird143

Wow I missed so much these past few weeks!

Herceptin alone is soooo much better than 5 bag chemo- good riddance Taxotere, Carboplatin, Perjeta & Happy bag!!!

I started Tamoxifen today & going in for chest pictures & tattooing for radiation on Monday (33 rounds of Radiation starting this month).

After that I'm likely getting my ovaries out to stop the Estrogen & give me more options instead of 5 years of Tamoxifen.

Did anyone else get recommendation to remove ovaries to be proactive?

I'm so ready to be done with treatment but I have to keep going until January 2017.

lago

Babygurlwarren and mltdd Part of the reason some MOs don't know about the less common SE is

• People don't report them
• No one is keeping a record and sharing the information about the less common
• The some drug companies don't list them although required.

Heathet

songbirg143- my BS and MO both recommended that I get my ovaries removed because I am 95% ER+ and 80% PR+. They also said I can take certain medications to shut my ovaries off. If I opt for the surgery, which I probably will, it would be next spring when I'mdone with treatment and my body has recovered.

ElaineTherese

songbird,

I'm doing ovulation suppression (OS) rather than ovary removal even though I'm 95%ER+/PR+. My OB/GYN doesn't like to take out ovaries unless there are problems with them (e.g., painful cysts). He says that women who keep their ovaries live longer than those who have them removed. OS hasn't been that bad, just a little inconvenient.

Tresjoli2

I'm with Elaine. I do OS and tamoxifen. My OB does not want my ovaries out at all. He said they provide many benefits and insisted I keep them. So I take Lupron every three months to keep things silent.

KateB79

It looks like I'm going to start Zoladex in three weeks, assuming that my insurance company will pay for it (they will). My MO wants to keep me on Tamoxifen for at least another six months, along with the Zoladex, before talking about an AI. She's worried about SEs from an AI; I'm more concerned with long-term heart and bone health. My only SE on tamoxifen, other than tamoxi-rage, is hot flashes.

The SOFT study, it would seem, has reached the ranks.

Only two Herceptin infusions to go. I hear y'all on Herceptin and the whole "there are no SEs" thing, which many of us know is BS. I get a headache and feel generally run-down and flu-like for a couple of days; I've also been getting myalgia in my legs for a few days after infusion. My MO's response is that I should take ibuprofen. My infusion nurses think it's a hydration thing, though, so maybe I'll stay for the rest of the bag of fluids next time, since nothing beats sitting in the infusion room for an extra 45 minutes (lol).

Heathet

thanks songbird - that's good to know! I'm thinking I'll keep my ovaries!

amylsp

If you're under 50, it's best to keep your ovaries if possible. I just had mine removed along with the tubes, but I'll be 55 this year and we were 95% certain I was in permanent menopause since the chemo stopped my periods 19 months ago.

Jlb2016

amylsp- what was your MO's opinion on the removal of your ovaries? I had full hysterectomy when I was 47 and my ovaries were left. I am now 49 and I've asked my MO abt surgical removal of ovaries and she said I don't have to. I stopped having my period immediately after my hysterectomy

amylsp

Both my MO and Gynecologist were fine with the removal of my ovaries. My age and the fact that I was already acclimated to a menopausal state ( and had, in fact, gone through several years of peri-menopause before the cancer diagnosis) reduced the risks of ovary removal significantly. I researched this issue for a year before making my decision. The long term risks of removing your ovaries are greater the younger and farther away from natural menopause you are. Imo, it's not something a woman under 50 should consider unless medically necessary. But as with all cancer treatment decisions, it's a personal one, and you need to do what makes sense for you.

ashla

Several of us in this forum have been involved with clinical trials. Sadly, there have been few that specialized in metastatic Breast cancer where we need the most work.

There is a relatively new project called the Metastatic Breast Cancer Project that is devoted solely to this. It is through The Broad Institute and Dana Farber Cancer Institute of Harvard University Medical School.

I sincerely hope none of you or anyone you know finds yourself/themself in this place but ask that you/they consider registering your tumor sample here if you/they do.

Help transform our understanding of metastatic breast cancer.

If you have metastatic breast cancer, join a nationwide movement of patients, doctors, and scientists by sharing your tumor samples, your medical information, and your voice. Together, we can speed the development of future therapies.

https://www.mbcproject.org

SpecialK

lago - thanks for helping Kona with the trial info - was relying on my phone to check in and never seemed to be in the right place to keep it charged while I was traveling. Back home now, tired but doing OK. Had last post-op with PS - she is super happy with how things look, allergic reaction fully under control. It is interesting, I stopped taking Femara a couple of weeks prior to surgery, so it has now been a month since I have taken any - can't believe how much less pain I am in! Also, now that I have an implant more than 200ccs smaller in the right side I have no more pain there either. Realize now that coping with chronic pain was wearing me out. I am going to go back on Femara shortly, different manufacturer, but if I develop the level of pain I had previously, I am stopping - I have done my five years and the BCI showed low benefit anyway. Are you noticing any change since you stopped? Pathology report done on the biopsies done during this recent surgery, predicated on the abnormal PET done a week before surgery, showed all kinds of granulomas/inflammations/fibrosis/metaplasia over where the cancer originally was.

ashla - thanks for that sweet post!

lago

Yeah been almost a month of exemestane for me. Seems I'll be plucking eyebrows again.