TRIPLE POSITIVE GROUP

FlaviaRose, You have come to the right place.  We all have been in your shoes, and wish you the best of luck as you process all this information and decide on a treatment protocol.  Alot of us have done the TCH regimen and it is doable!!

Lago, you always have great advice!  

To all those ladies who have finished their treatment, I want to say a heartfelt thank you for sticking around on these boards.  You provide much so much knowledge and guidance and offer a warm shoulder to vent to!  THANKS!!

Hi Flaviarose--U are in the best possible place for info and care on this thread--There is so much knowledge and comfort here u will not be sorry asking or readin all this info. I'm sorry u are going thru such a hard time so quickly, but take deep breathes and as was said watch Dr. Google--not a good idea. Honestly the ladies here know more than the computer can tell u and they explain it better. Of corse u'r decision is u'r decision and no one else can make if for u and when u do decide u will know what's best for u'rself--it's a feeling that u get without question and go from their. U have to feel good with u'r team if u don't get more opinions ---once u get the feeling of trust and comfort u will make all the right decisions.

BTW I know I have said this before, but my sister is /stage IV and we were diagnosed within a couple of months of each other, she;s still working full time, will be retiring soon anyway.Inmy theory and u all know I have way out theories when u'r older I don't think it moves as quickly. it's like it's old too and it slowly gets energy--I know that sounds stupid bit as Long as my sister and I both believe it we're doing OK according to the DDrs. LOL I know u probably think that I take cancer lightly---I take none of u'r cancer lightly and I worry too when I read how scary it is for u and u'r decisions and the fear u might have with chemo etc. I take my cancer lightly I did the first time 15 yrs ago and this time too because u do what u think is right and trust and have faith and it is what it is-For the next generation amazing things are happening and I'm happy for them, most won't go thru what we have been thru. Like I said i'm quirky but always have been.

Iago, thank you so much for taking the time to give me such good advice and information.  I'm so glad I asked my questions, I realize that I just have to have faith in the doctors and let them do what they need to do to get me well.  Thanks again.

Thank you, Dana.  You are so soon after surgery and sounding good!  That gives me hope!

Flaviarose,

Regarding all your naturepathic supplements...if you decide to go the conventional route, you must discuss all supplements, herbal remedies etc with your medical teams. Actually, you should discuss it with them regardless. There are serious contraindications to these and even OTC meds when you are treating cancer.

kayb,

Your post is straightforward encouraging anecdotal information, like mine.

Prior to doing CAF, my MO agreed to my request to reduce my dose of CAF by 10%. I also refused blood boosters during treatment, prolonging my misery of treatment by 1 1/2 months, but avoiding a blood booster that later was pulled from the market. Although I would probably choose to do trastuzumab instead of chemo today as a stage 1, grade 3. I never did trastuzumab treatment because it was still in trials at the time I was diagnosed and my "specialist" was oblivious or unconvinced about its effectiveness.  I did 1 year of tamoxifen at full dose and 3/4 yr at half dose, and then quit the tamoxifen due to the information that I (rather than any of my cancer specialists) provided to them about the 1/3 of HER2 positive patients who did worse on tamoxifen. I freely state my age at time of dx, to help others see me in light of the major differences that occur with aging and full menopause, because the outcomes differ proportionately between those who are under age 55 at time of diagnosis and those who are over 55 in terms of libido, recovery, etc. Because doing chemo results in particularly predictably difficult SE's that occur after completion of treatment, I feel it is important to include those results and not just the good news that it is "doable" at the immediate time of treatment. I try to make it clear that doing chemo, for MOST patients who are treated with it, results in considerable difficulties with changes in libido and physical abliity to participate in enjoyment of sexual relations. Not everyone who asks wants to hear it all, but for those who are genuinely wanting to hear the plusses and the minuses before deciding what to do, I think it is best to say it like it is. I hope they come to a comfortable decision for themselves whether or not it is what I would do in their place.

A.A.

Thank you, Ashla.  I'm starting to realize this.  When I had my biopsies, I bled more than expected.  Turns out that turmeric, fish oil, digestive enzymes, etc. are all blood thinners.   I'm stopping everything to get ready for the big surgery.

Lago, I agree, each person's experience is just anecdotal, and age/postmenopausal status is quite important.

Here is some objective information about VVA in postmenopausal bc patients vs premenopausal bc patients. (The vast majority of bc patients are diagnosed over the age of 50, so the incidence in the total group of bc patients is generally high.)

"The prevalence of VVA in some subgroups of women can be much higher. In a cohort of breast cancer survivors, vaginal dryness was present in 23.4% of the premenopausal patients and in 61.5% of the postmenopausal patients."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800285/

On the brighter side... there may be hope for the future....

The drug ospemifene has been approved for use for VVA by women with no history of breast cancer. In addition, this study shows the results for the use of ospemifene and 4-hydroxyospemifene in mice with breast cancer:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3246110/ 

Flavia, I am one that has to read everything about a topic. i do not trust the doctors implicitly and argue with mine regularly. After doing extensive research on diagnosis, to the point of obsessiveness, I felt that i had researched three thesis papers, one on my pathology, one on reconstruction, and one on treatment. I then developed a panic disorder, lost weight, couldn't eat, couldn't sleep, heart palpitations, normal BP went up. Had to take an anti anxiety drug for awhile, but I would not have done it differently. I interviewed four oncologists, two breast specialists, and had planned on three PS, but liked the first one so well, I stopped. At each interview, I faxed over my list of questions the day before so he/she could be prepared. (that only marginally worked, which really annoyed me). I taped every conversation so I could review it. I had this time since it took three biopsies to find the invasive component....also frustrating. 

Like you, I researched the natural alternatives also. I finally decided to take the medical route, which for me was 12 weekly doses of Taxol, with herceptin, followed by herceptin alone after my BMX, and then work on the natural things and supplements to complement my treatment. I was religious about it for eighteen months and have loosened up in the last six.

On chemo before or after....if the main reason is to see if you respond to chemo, wouldn't you think that they might try a dose or two, see if you respond, then do the surgery, and then finish the chemo, or would your immune system be too compromised to do it that way?

Immune systems....I made it through chemo and herceptin never needing any boosters. My counts were just squeeking by at the end of chemo, but they came back up reasonably quickly. I definitely feel like I don't have the same stamina, but I keep pushing it. Weird thing is that I have gone two years without a cold, no flu, no sinus infection (which I seemed to get once or twice a year before). Cant say I feel better than ever, but i have not been sick.

Tamoxifen and AI...if I am going to have to take something for ten years, which i am actually kind of ok with, then I want to stay on tamoxifen for 5 and go to AI for 5. Like Cypher, I have "recurrence hypochondria", no matter how many seat belt speeches I read, Lago, lol, and feel like the additional time will add protection. I am paranoid that the AI will cause my hair to thin, and I really like my hair right now. It came in thicker and a little different in texture and i can do more with it.

Plus, I can't wrap my head around the fact that after we finish treatment, and it is out of our system, what protects our cells from going down to the wrong side of the tracks with the other bad kids? Seems like we should keep something going.

Cypher...I am still not convinced that the scapula area pain which they believe is some cervical arthritis is that, lol. I focus on every pain. I also feel like I need to do as many bucket list things as I can. Currently planning a cruise to Alaska with friends this summer. I have decided if I make it to a little old lady, I will be sitting in a trailor park in florida as I will have blown all my money. I will have great memories and good pictures though!

And finally, LIBIDO...mine is a fair amount lower, but I have used KY intense and the scream cream. Both are vasodialotors. They do not help with pain, but yowza, pretty good for enhancing. I need that lidocaine gel. My ob/gyn wouldn't prescribe it as he said he needed more info. My nurse practitioner friend was concerned that if there was s ome kind of injury you wouldn't realize it. (pretty sure that is unlikely), but i think she is going to prescribe it for me to try.

Tonlee...still laughing at your comment. I took it a step further hearing our DH's said...what are you doing, I can't feel a thing. LMAO.

Does anyone remember who had their process for weaning off effexor by emptying the capsules? I am weaning off my low dose to see if I can tell a difference in the level of hot flashes, and am to the point that I need to start doing that.

camillegal I've heard many gals say that mosquitos don't like you when your have chemo in your system.

Choosing my medical teams and treatment centers were some of my most difficult decisions. I finally went with a smallhospital locally based ..albeit world famous BS and the MOs he was affilated with. My family met with him and all agreed. I had dealt with a major cancer hospital in the past with family and found it too impersonal. My alternative would have been Memorial Sloan Kettering. If I should recur or have mets...that's where I'll go because they have access to all kinds of trials.

Go with your gut instincts.

Flaviarose,

Welcome to this thread!  You have received a great deal of useful information and personal commentary. I hope it helps you make your decision. FWIW, as several ladies have stated, so many of us were freaked out of our minds when we were given the BC diagnosis, especially being told about the presence of the HER-2 protein molecule which makes the cancer aggressive in nature. Many of us lead healthy,active lives, so the shock for some of us was even more profound. However, once one gets over the shock, you have to be your best advocate. It is your body, use your intellect and access to info., here, as well as online and by interviewing your treatment team members--if they are resistant to it, then walk away, as I have bombarded my team members with intelligent questions based on reading copious amounts of academic journal postings relating to the BC I have--so that you can make as good a decision as is possible. AlaskaAngel is correct in stating that, at the end of the day, no one on this planet has all the answers to our questions, so there is a leap of faith that is required. I, too, was so appalled, initially, at the thought of assaulting my body with chemo, radiation (left side, they had me hold my breath to move my heart lower in the chest cavity so as not to radiate it outright---Ashla has written about the fact that now they are getting patients to lie face down as that seems to protect the heart more---ask your radiologist about it, if you go that route), Herceptin and now Tamoxifen; however, all thee reading I did (plus interviewing two naturopaths and one homeopath) led me to decide to go the traditional route. I will be one year with NED on May 28 of this year, and I have recovered well from the treatments. Yes, one's libido is altered, especially during treatment, but I am in lago's camp in that it has come back to a decent level, and organic coconut oil is my secret!!! I also drink one tablespoon of 100% virgin olive oil daily, as recommended by my MO for many different reasons.  I was 49 when I was diagnosed in April 2012.     

Good news for those who have or worry about lymphedema....accupuncture !

http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/5/news_id/3702

PatinMN,

Making the choices is hard, but it is so good that you feel yours was the right decision for you.

I do think it is sort of pathetic medical practice, though, that statistics won't be available that would show whether or not the use of trastuzumab alone (without chemo) works for small tumors.

For some, the difference would be truly worth knowing.... those who can't afford the added expenses of the extensive treatments and support drugs and labs that go along with chemotherapy, but not necessarily with trastuzumab when it is used alone... or those who are self-employed so have to keep working whether they are able or not through the combination, or those who have no one to help with eldercare or other people they care for that they already are responsible for dealing with. But the medical world just turns as if the hardships involved for many complicated situations just do not matter enough to pursue the question.

Do you use the coconut oil as a lubricant?  It is also good to eat a spoon or two a day....