TRIPLE POSITIVE GROUP
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astyanax66, Just-in-It, and Jstarling - welcome to the place none of us wanted or planned to be. It is scary and way too much information comes at us to be able to really process it. Once a treatment plan is in place, it does seem as there is a little more control. You can also drop in on other threads on this site as your diagnosis and treatment plan is clearer. I strongly recommend those related to your specific treatment plan and diagnosis. For instance, I started in the "lumpectomy lounge" , then was told about the HER2 so I came here. I still drop into "weekly taxol" although I stopped mine last March after 8 doses. I have gotten fantastic support from my "starting chemo Feb. 2017" group (and I know there is a thread of "starting rads on..."). We even set up a private facebook group. And now I read the Arimideix and Femera posts.
Sorry, about the mixed messages and confusing information you are getting, Just-in-it. ElaineThere outlined who's on first. But it's important to remember that you can change providers if you don't feel acknowledged or your questions answered. Some programs have a "nurse navigator" or someone with a similar title who can also help you coordinate your care.
Most TP get chemo (what and how much depends on diagnosis) with herceptin. You probably won't be put on hormone suppressors until you finish chemo and rads and which one you get is related to whether you are menopausal or not. I had no trouble with the herceptin although painful neuropathy on Taxol. I have minimal complaints about my AI but it is my second one. Your MO should work with you on that when it is time.
I'm glad I had a port (just had it removed last month) as I'm not an easy blood draw either. Do try to have some time - I had 10 days - from the time it is put in until your first chemo.
Sorry this got so long. Happy weekend everyone.
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Hello Hap, if I am on your list of people you'd like to block (don't think that's possible here), to clarify:
1. I agree that diet and lifestyle matter. Many studies show the importance of adopting as healthy a lifestyle as possible and I have made changes. I don't believe that “some women" here are sticking their heads in the sand
2. I have never said - personally - that I disagree with asking about risks and benefits of treatments. I am not sure anyone else has disagreed with this, either.
3. I have stated a few times that I respect your personal journey a great deal and appreciate your individual experience and why it's been so difficult to determine which way to go. I don't believe anyone else has debated that point, either.
My ONLY concern has been that the tenor of many of your posts has been swerving toward anti treatment and has been moving more and more towards “treatment won't help you; it will in fact hurt you" as well as “don't trust the system; it's evil". When commentary starts to live in this place more and more, it just seems that it's a discussion better suited to a thread that wants to explore that topic more. I don't believe a single person here does not want to hear ideas on diet and lifestyle, or encouragement to ask their MO's questions.
My impression - and I speak fully for myself - is that you might not be understanding the nature of a few peoples' reactions here. It may not be fun for some entering treatment to log in and keep reading about all the ways treatment will fail. In that vein, I will rigorously try to offer balance. For instance, in the article you have linked to, nowhere does it offer any conclusion about diet and it’s role in cancer reversal. I’ve not read one study that concludes diet as a weapon against cancer in any definitive way. But prevention? Sure, yes! I wholeheartedly agree it plays a role. So again, it’s just a balance thing for me, because a) I believe some of your conclusions about treatments are skewed, and b) many of us - as you have said - do not walk your path and may not have the choice but to take every bit of treatment they can. You have said several times that you have a low possibility of recurrence. Welllll, I have different numbers than you. As do others. So just please note that for many, treatment is what we need to live.
I come here for information, support, and encouragement given the path I have taken. I don't know about others. I try my very hardest to always respect others and a comment such as how some women have their heads stuck in the sand was - quite honestly - antagonizing for myself as a reader. You were angry and felt ostracized when you wrote that, I am sure. And I am sorry you felt that way. But I truly feel that as a community, we need to try and offer an emvironment that the majority of posters want and need. If I happen to be in the minority with my views here, then I will respect everyone and either vacate or just shush myself.
Sorry for the long post, but I wanted to clarify what is specifically troubling to me personally. I don't want to foster any animosity whatsoever. I just don't want one kind of view to overpower and frighten others.
You’re so right that we can agree to disagree.Have a lovely weekend, everyone!
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astyanax66 - My Surgeon asked me to sit in the sun in a topped strap swim suit. I got enough of a tan line to see where in most clothes my port and the scar afterwards would not show. He also placed it somewhat low. Pretty smart guy, wasn't he?
Still-In-It… - See if your center / treatment place has a Patient Advocate or Ombudsman. Meet that person and get your records straight. Cherry is right ... it is going to be OK.
Cherry - Remember when you first joined us? Look at you now! I am so proud of how you have made this journey and are now helping others.
Vicky
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Happy Saturday ladies! Ok let's see if i can hit everyone. Lol
Hapb, please don't feel as though you should leave the thread. We are all adults, if i start reading a post and disagree i just skip that one, we all should do that.
Welcome Astyanax66, Just-in-it, jstarling----- sorry you have to join the group but you are in a great place for info. Such a scary time when your first diagnosed. Some things that helped me, Take notes, ask questions, accept help!
Suburbs, hope your infection gets better.
Cherry, i always knew you were strong and would kick a** in this.
Special, vicky, taco and all you other lovely ladies hope you are doing great.
Thursday i had my "survivorship " clinic appointment. It was interesting. I did get a referral for acupuncture, ( my MO thinks it will help with my joint pain and hot flashes) heck i will try it. I talked to a counselor about emotional health. She says I'm doing incredible (i blame you ladies for that). I also got info on diet, drinking and exercises to do. (She gave me the ok to have my occasional beer or wine😀) yay. Confirmed that i couldn't of prevented my cancer.
i seen my MO yesterday about the horrible SE I've started to get. After 2 hours of talking this is what we have decided to do.
Take 2 weeks off to give my body a rest. Yay , but what's 2 weeks gonna do?
Report back if my massive hot flashes subside, and joint pain, and headaches, and vaginal discharge.
If they settle down then when i start back up i will take effexor? (Sp) and then tamoxifen butt she recommended splitting the pill. 10 mg in the Am and 10 mg at night. I know this has been brought up before on here so i mentioned it. She says she's done that in the past and found no problems.
Hope all you wonderful ladies are having a great weekend
Geez i think this could be the longest post I've done.
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People come to this topic because they’ve been diagnosed with triple positive and want to know what it means, how it’s treated, how to move forward. They don’t need to be blamed for their cancer.
I, for one, would like to hear if anyone is planning on starting Nerlynx/Neratinib after Herceptin. It’s so new that there is little discussion online about it. There’s a dedicated topic here but it’s not very active, I assume because so few are taking it. Or they can’t crawl to the keyboard to enter their thoughts about it. Sign me, Worried.
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Astanaex66, still-in-it, jstarling welcome to our group. You will find amazing support, inspiration, encouragement and helpful information.
Astanaex66 - I got a port because I have terrible veins. I thought the surgery was easy and I had my first infusion the same day. I don't think that was a good idea but I did OK. The recovery took me longer because I had a torn rotator cuff muscle on the same side they placed the port. I LOVE how coach's doctor placed her port lower. Mine is pretty high but I have a halter top swim suit which covers it just fine. My opinion on the AI is, according to my MO it is a must have for triple positive so I take mine religiously. I had to switch because of terrible pain but now my side effects are very tolerable. Make sure to tell your MO of any issues you have and they will provide solutions. I am big into acupuncture, massage and essential oils to help with pain - each of us has to figure out what works for our individual bodies. Good luck at your planning meeting next Tuesday and ask lots of questions!
Still-in-it: all I can say is get a second opinion. You really must trust and feel good about your medical team. I was not comfortable with my original team; some were great and others were just lacking. So I went for a second opinion and immediately felt the right connection. I have a care management team - maybe you have someone similar that you can talk to? My medical team made the whole cancer journey less frightening. I actually looked forward to going to my treatments because of the wonderful care I received (my husband thought I was nuts). I pray you find peace as you begin treatment. Please tap into this community for support whenever you need it!0 -
Shelabela - sorry you're having so many side effects and pain. I have done acupuncture for many years and found it helpful. My main guy is a traditional practicing Chinese doctor and I have had great results for pain and a number of other issues. I had a few sessions with the acupuncturist at the cancer center (it was free) and she had a different method; I didn't get any relief with those sessions. I'm not sure if the method makes a difference but I think this is one of those things where it might work for some but not others. I hope it works for you and you get relief soon.0
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My MO initially was not recommending Neratinib/Nerlynx initially, but she has agreed that I am in the subset that could see the most benefit, up to 5% according to this article: https://jnccn360.org/breast/jnccn-spotlights/neratinib/. She has agreed that I should try it. I’d like to hear from others who ARE taking it or who PLAN to take it.
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I’m on my sixth month of nerlynx and have had very few issues with side effects. There is a very active Facebook page for nerlynx users.
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I am glad your voice will be here. We can all agree that we need to take good care of ourselves, each in our own way. I am just taking all of this one step at a time
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yes, I am also on anastrozole. I know that there is debate about who should take nerlynx and it is an individual decision. I do recommend joining the Facebook group to learn more about other experiences. My insurance does pay for it
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I'm not on Facebook, so I ask here.
As of now, myMedicare RX lowers the copay to about 3K per month, which can then be further erased or mitigated by foundations. I’ve been approved for the first month and then some, but then will be chasing funding for this drug. Some private insurance is covering it. People who have no insurance at all can get it covered by Puma, the manufacturer.
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HapB - Just to confirm, I appreciate your posts as you and I have some similar issues.
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Wow, I've been out of the loop. Forgive me for not responding individually to some of you as I can't remember who posted what now that I'm writing, lol.
Shebela, I was lucky when I took Tamoxifen 18 years ago. The only awful side effect was weight gain. I had many friends from the old WebMD Bosom Buddies site that had to stop Tamoxifen for major side effects. Hopefully, the break is just what you need.
HapB, please do not stop posting, as Shebela said, if we don't want to read a post, we just won't. And that's all I'm going to say about that "Forrest Gump"
Cherry, wow, you sure have come a long way, as another poster said. And your wig is rockin!
Those who wrote about Nerlynx - I am advised to take it also. I am on the Facebook page dedicated to Nerlynx. I am super afraid. My chemo infusion nurse at my cancer center is on it too. But...she has a bathroom nearby. I am a home care nurse and will not have access to a bathroom within minutes. My family tells me to wear depends and bring extra clothes in the car...that's just gross, I can't. I am not one who ends up with a lot of side effects, I am super lucky, but that doesn't mean I won't get a lot of diarrhea. Seems all MOs think differently. I was Stage 1, no nodes, and just past equivocal on Her2. But...it's the blood brain barrier that makes me want to take it. So very unsure.
As far as AIs go, my MO is suggesting Aromasin. Most of you seem to be on something else. I took Femara for 6 years 18 years ago and had zero side effects. He will not put me back on it because he said it was a fail. Aromasin scares me too due to the steroid aspect. Would love to hear from those on Aromasin. I just don't get it, ovaries removed in 2006, complete hysterectomy 2015, 100% ER positive tumor 2017...ugh!!!
Suburbs, that infection has been going on for quite some time. What are the doctors doing for you now? How are you doing on Nerlynx? Praying for you to get rid of that infection once and for all.
I get these stinken expanders out 3/15. My friend from back home in NJ just got hers out this past Friday. She said she feels so much better. How bizarre that she got the same implants that my BS in Florida is putting in me? I could not believe that.
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KimCee,
I'm on Aromasin. It's OK; I don't have any major joint pain on it. It did make me moody (just as hormonal changes during pregnancy and my period did), which means I'm on Celexa. It also gave me osteoporosis in two years, so now I'm on Prolia. I don't really notice the steroids.
My MO isn't a fan of Nerlynx. Plus, I was too far out from my last Herceptin infusion to qualify. It is the case that my chemo did not cross the blood-brain barrier, and that a good percentage of triple positive women who develop metastatic breast cancer end up with brain mets. But, my MO wasn't very impressed with the minor impact of Nerlynx on the women who received it in the primary study of its effectiveness.
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ElaineTherese, I agree regarding the stats for Nerlynx. If I read it correctly, seemed like a 2% difference. I am so on the fence. Some days I say "just do it" and other days I say "no way". Thank you for the info on Aromasin. He wanted to start me over a month ago but I was quite depressed and he didn't want to add to that. I got osteoporosis after a few years on Femara, I have had 3 Prolia injections so far
HapB...I never thought of that. I do not know why we get chemobrain...good point. Yes, nerlynx crosses the blood brain barrier.
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This is my wig... I went red and straight for a huge change lol...just figured out how to post a picture...
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HapB, that is horrible that you spent so much. It is synthetic and is is by Gabor. I got it at my cancer center boutique for $195. I have 3 others that look awful on me. Everyone prefers this to my natural yucky hair. Can you get yours cut or styled so that you are happy with it? I had the bangs cut on this one.
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hello Ladies,
KimCee, wow, that wig looks great on you! And it does not look like a wig at all.And you have beautiful eyes!
I had two wigs, the second one I liked a lot more than the first. It was "Drew" by Jon Renau, a Heat Defiant synthetic. It was $299. Also, their roll-on glue is amazing, a true game changer.
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KimCee, your wig is beautiful!!!!
I found this link about chemo brain. It’s real, but they don’t really understand why.
https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
On the topic of diet and lifestyle, I do recommend that you key into Dr. Lisa Schwartz. She’s not only an oncologist with 20+ years, but she did two years study in Chinese medicine and then 2 years of integrative medicine. She supports treatment (obviously), but knows that the medical system does nothing for women once treatment is over in terms of nutritional and other wellness treatment. I get her emails...just putting that out there!
I’m off to Punta Cana tomorrow and got my horrid nails done lol.
Hapb, I’m happy you’re here too. I respect your situation and was just concerned about new people feeling some despair. We can skip emails, yes, for sure. But it’s hard to unsee stuff when you’re new and reading everything. You’ve done a great job clarifying what you mean and I know you’re supportive of everyone!
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Wowsers! Love that wig
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Thank you Photogirl and Posey.
I will look up that wig Photo. This one is getting ratty on the underside. Gets knotty but I do need to wear a wig for a while yet. I also read that with every day use they only last about three months. I am just about at 4 months so time for a new one. Thank you, this is no eyebrows, no eyelashes. They are just beginning to grow.
Posey, have an awesome time in Punta Cana. Sorry you had nail issues. Thank you for the link and I will check out Dr Schwartz. I am awful with diet, love the poor choices!
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KimCee, you look beautiful in your wig!
Posey enjoy Punta Cana.
FYI: I had done some research on Nerlynx (neratinib) myself. The FDA has a PDF file for information on Prescribing Nerlynx (neratinib). Here is the link: https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/208051s000lbl.pdf
They give the results for the ExteNET trial under Table 8 and 9. (Very deep into file. It also gives side-effect information.) The demographics are as follows:
"Patient demographics and tumor characteristics were generally balanced between treatment arms. Patients had a median age of 52 years (range 23 to 83) and 12% of patients were 65 or older. The majority of patients were White (81%), and most patients (99.7%) had an ECOG performance status of 0 or 1. Fifty-seven percent (57%) had hormone receptor positive disease (defined as ER-positive and/or PgR-positive), 24% were node negative, 47% had one to three positive nodes and 30% had four or more positive nodes. Ten percent (10%) of patients had Stage I disease, 41% had Stage II disease and 31% had Stage III disease. The majority of patients (81%) were enrolled within one year of completion of trastuzumab treatment. Median time from the last adjuvant trastuzumab treatment to randomization was 4.4 months in the NERLYNX arm vs. 4.6 months in the placebo arm. Median duration of treatment was 11.6 months in the NERLYNX arm vs. 11.8 months in the placebo arm."
Invasive disease-free survival (iDFS) at 24 months Nerlynx 94.2, Placebo 91.9
However, in Table 9, they break the information down further.
Hormone Receptor Positive iDFS at 24 months Nerlynx 95.6, Placebo 91.5
Hormone Receptor Negative iDFS at 24 months Nerlynx 92.2, Placebo 92.4
Negative Nodal Status iDFS at 24 months Nerlynx 97.2, Placebo 96.5
1-3 Positive Nodes iDFS at 24 months Nerlynx 94.4, Placebo 92.4
4 or more Positive Nodes iDFS at 24 months Nerlynx 91.4, Placebo 87.3
The Lancelot published an article (which I do not have access to) that gives a 5-year Analysis as: "The 5-year invasive disease-free survival was 90.2% (95% CI 88.3–91.8) in the neratinib group and 87.7% (85.7–89.4) in the placebo group." Without access to the tables it is difficult to know if the benefits followed along the same lines as the 2-year analysis.
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KimCee - Love that wig on you! Is it by any chance the "Premium" by Gabor? I got one in that style at no cost following the "Look Good Feel Better" workshop I attended (they let you try on donated wigs, many of which have never been worn) and wore it to a memorial last month. Unfortunately, it turns out that I have a *tiny* head and the cap on it was just too big for me, even using the "It Stays" roll-on water soluble glue. A petite cap Jon Renau that I tried was also much too loose and was sliding all over the place. A tiny bit of "Simply Styling" silicone sprayed onto hands and run through the ends of the wig hair may help with the knotting you're having on the underside, or you can also trim off the ends a little.
I ended up buying a similar style - the Tatum by Amore, since that brand is designed for people with little or no hair and the cap is sized to be snug. (I still have about 50% of my hair due to cold capping but since my head is so small the cap fits me well.) It's delivered with a center part and full fringe, but can be parted as desired and when I wear it I style it with side-swept bangs.
For anyone wig shopping, I highly recommend Cysterwigs as both an information resource and a great place to shop. https://cysterwigs.com/ They have a great Knowledge Base for info about wig care, sizing, color, etc., super helpful Client Care Desk that will answer specific questions via e-mail, client photos and video/blog reviews of virtually every style they carry (so great to see things on real people in addition to the models), offer 30% off most products every day with code INHOUSE + free shipping & exchanges. It's also a small, woman-owned business!
I'm very interested in the discussion here about Nerlynx; thanks all! It's something I asked my MO about before I even started chemo and she seemed a bit on the fence about it at the time. I have my final chemo tomorrow (!!) and will then have 8 months of Herceptin/Perjeta, so I'm still a long way from being in the right time frame for it, but I'll ask again and start educating myself.
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looking good kimcee!
My MO said no way on Nerlynx. She said the side effects are horrific and the gain minimal at best. I see her in April. Wonder if she will feel.the same way.
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Regarding Nerlynx, my MO said that everyone in their group was surprised that FDA had approved it. He didn't think it would be beneficial for me. He was especially worried about liver toxicity.
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HapB - yes, my heart improved almost back to my own low normal. I still get winded when I ride my bike up a slight incline or against the wind. Fast walking is fine, though. Insist on more echoes than every 2-3 months, I feelthat my problem could have been avoided with more monitoring.
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Can't believe I'm asking this question....but has anyone lost weight while on Herceptin only? I lost a couple of pounds while on Taxol/Herceptin together, but my last Taxol was 6 weeks ago and I am still losing weight. I was a few pounds over my normal weight when I was diagnosed, and now about 10 pounds lighter. Losing weight without trying is NOT normal for me. Should I be concerned? Or is it likely the Herceptin (at a higher dose now). I feel like I still eat, and while I am trying to make healthier choices, there's been no radical change in either the amount or type of foods that I eat. I found an old thread that mentioned weight loss as a possible side effect, but I don't really see it in the official literature. I would like to be armed with as much info as possible for when I see my oncologist in 2 weeks bc she thinks I worry too much about everything, which is super frustrating, bc this belief leads her to underreact. But that's a story for another time....
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KimCee,
The heat defiant wig I mentioned was an amazing thing to wear, but it does need constant caring. Partly because it is long, so it rubs agsinst your back. But, the HD wigs are also easy to bring back to life. You just need spray a special JonRenau liquid on them (forgot the name), and iron them, and they're like new again. and you'll see many videos about that, but I especially liked Miss Patty's youtube tutorials on how to bring back very worn wigs to life.
Also they say steam can do wonders to non HD wigs, I have never tried that. But: if it is about to be thrown away anyways, it is worth a try.
Red,
Unfortunately I have only been gaining weight, all the hormones are messing with me. I hope as good weather comes I will become more active and lose some, cause I truly hate myself like this. But always ask your doctor, no matter what she might think about your questions.
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I have been following this forum ( reading only) since my diagnosis in 2011. The recent discussions re. treatments versus lifestyle choices/ alternative therapies caught my interest and prompted me to post for the first time. I'm definitely in the treatment camp. I remember being told that I had 5 treatment options. I said," Yes, bring it on". I had a mastectomy - a very tough change for any woman. A prosthesis and good fitting bras helped a great deal. Then 6 rounds of chemo. I lost my lovely shiny brunette hair but, "Guess what?" - it grew back again. I almost gave up on the chemo at round 5. I found it very tough. But if you can, you just keep going and persevere with gritted teeth and before you know it, you've done round 6 as well. Then radiotherapy. 15 rounds I think ( I've actually forgotten - yay!). Easier than I thought but a bit surreal in a space- age kind of way. I also had 18 rounds of Herceptin which was " a walk in the park" compared to the chemo. The veins in my left arm are not easy now for inserting needles if blood tests are needed for any reason but there's always a way around things and I consider it a small price to pay. I'd already started with daily Letrozole( Femera). Definitely some aches and pains in hands and feet but nothing that stops me getting on with life. The Letrozole was extended from 5 years to 7 years. A Dexa scan after 3 years showed a slight decrease in bone mineral density- osteopoenia. I started a once weekly oral bisphosphonate (Risedronate). It's a nuisance. It gives me diahorrea sometimes. You have to remain sitting upright and eat nothing for at least 30 mins after taking it. But a recent Dexa scan showed an increase in bone minertal density - so once again- worth persevering with. 3 years after my mastectomy I decided to have a DIEP reconstruction- one of the best decisions ive ever made. The recovery time was long and arduous but well worth the end result. I havent changed anything in my lifestyle other than than I now drink very little alcohol. My ONC says, "Everything in moderation". I've always eaten a healthy enough diet but I enjoy a biscuit or scone with my morning coffee and Christmas was the usual choc fest. I take moderate exercise.
I understand that everybody dealing with triple positive BC has a different starting point and that everybody is operating in a different family/ social/ financial / health context. I can only speak from my experience which is mine alone. I feel extremely grateful to have had the treatment opportunities offered to me. It was a grim treatment journey at times but I'm now 7 years NED and enjoying life. There really can be light at the end of the BC tunnel. I have a very close family member who told me at the time of my diagnosis that carrot juice is the answer. She also believes the big pharma conspiracy idea. It's a good job I love her!
DX: 5/ 2011 IDC 1.9 cms Grade 2 6 nodes Er+ Pr+ HER pos.
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