TRIPLE POSITIVE GROUP

deni1661

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.

bareclaws

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.

Wellshoot

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.

Jstarling

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

Wellshoot

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

bareclaws

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.

Blownaway

HapB - Just to confirm, I appreciate your posts as you and I have some similar issues.

KimCee

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.

ElaineTherese

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.

KimCee

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.

KimCee

This is my wig... I went red and straight for a huge change lol...just figured out how to post a picture...

KimCee

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.

Photogirl81

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.

PoseyGirl

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!

Jstarling

Wowsers! Love that wig

KimCee

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!

Tess111

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.

Magari

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.

Tresjoli2

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.

BBwithBC45

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.

Blownaway

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.

red332

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....

Photogirl81

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.

Bartley

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.

bareclaws

Bartley, thank you so much for posting about your treatment and seven years NED!! Something that everyone here wants to hear.

Gudrun

so thankful for your posting dear Bartley.

May I just ask you one question on your profile:

You mention 6 nodes. I suppose they had just been removed and were negative?

Thx in advance, G

Bartley

Hello Gudrun

Nope. 6 positive nodes out of 18 removed. They weren't extra capsular or anything like that. Even so it was a scarey result at the time. I can't do anything other than be grateful for the treatments and the fantastic care I received from the medical professionals.

Gudrun

This had indeed been a heavy dx then. I so fully unterstand you being so greatful for treatments and support.

You made my day. Thanks a lot and best wishes. G

Tess111

Congratulations Bartley, 7 years NED! (I want to be you, in 5 1/2 years!) Thank you for posting "hope" for the rest of us.

In the matter of Nerlynx, the benefits were definitely mixed. Clearly Hormone positive and those with 4 or more positive nodes got more of a positive result than the group as a whole. If I were interested in Nerlynx, I would ask my Onc to see who got the most benefit in the 5 year results. Even then, if I did not fit the profile for the most benefit, and I felt, in my gut, that I needed to take it, I would still consider pursuing the option.

For me personally, the cost and side effects are enough of a barrier that I have decided not to pursue it, but I support anyone who decides that it is the right course of action for them. In any case, it is another arrow in the Her2 fighting quiver.

One further note, I lurk on a number of forums where HER2 individuals post. Puma, the company that makes Nerlynx, had allowed compassionate use of their drug (allowing someone not in a trial to have access to their drug before FDA approval) in an effort to slow the progression of Her2 cancer for at least one patient. I have read that most pharmaceutical companies do not do this.

Jstarling

Bartley, you give us all hope and inspiration! Friday the surgeon turned me over to the oncologist who I visit tomorrow. So the next step begins for me. Thanks for checking in with us