TRIPLE POSITIVE GROUP

MissouriCatLady

Morrigan, keep us updated on the Nerlynx. My doctor talked to me about that back when I finished HP and I didn't do it. I've come back here occasionally and see there are folks that make it thru it okay. I'm trying to get thru my anastrozole, I'm almost thru year 3.

Beary, I did chemo first and it shrank it so much it wasn't there when I had surgery. I know everybody is different, and you may hear that so much you get sick of hearing that, but it's true. And don't write anything down in pen. I had to skip two chemo treatments because my counts were too low - it is not the end of the world (although you may think that when it happens). Try and eat well because your body needs those nutrients to keep your counts up. It's hard to eat when everything feels like it makes you sick, so use small portions so you can eat something.

I read this on here, when I first came here, and saved it in case I need it later: "I will never be grateful for cancer. But I am thankful for the lessons I have learned. For those just beginning your journey hold on. Reach out. Be tough. Be weak when needed. And know it gets better."

Nsbrown54

Has anyone had a full body scan? Just wondering about the process. I had my 6 month checkup with my oncologist NP recently and asked about scans. I wasn't sure she was going to request one for me. We discussed scheduling my DEX scan in August. Got a phone call this morning to schedule the injection and then the scan. It'll be good to have a baseline and hopefully reassurance.

SpecialK

nsbrown - like a chin to knees PET? I have had several - pre-chemo, post-chemo, then one at 5 years.

Nsbrown54

SpecialK - it’s a full body bone scan. Does a PET scan look at bone or just tissue and organs?

SpecialK

The PET I have had is with a CT overlay so it is looking at tissue, organs and bone, but is limited to the physical area scanned. I believe a nuclear bone scan looks at more of the whole body - if ordered that way, while the scans I have had did not include the head or below the knees.

Phelps128

Hi morrigan_25… How is the vaccine trial going? I should be having surgery beginning of April, so I am hoping there is still space (if I don’t have a PCR). I will push for Nerlynx too when I get there. I hope it goes okay for you!

Hi All! I am getting my butt kicked from TCHP cycle # 5. Last one is on 3/2! Any advice on BMX versus just lumpectomy (had one confirmed lymph node)?

Thanks again for being here! I check often:)

morrigan_2575

hi @phelps - the trial is going well. I go for my final booster 3/22 and, then it's just monitoring/check ins. I believe I have to go in for a 30 day checkup and after that they said it would be calls/emails for 2 years.

As far as I know there are still spots available.

My Chemo Brain is so bad. I've been bitching to everyone that my MO hasn't responded to my email 2 weeks ago to linae up Nerlynx treatment starting in March. I just logged into the Portal today to poke them and I NEVER sent the email 🤦🏻

YesIamaDragon

Last night I had a spine MRI to follow up on something that showed up on bone scan done for back pain.

That spot shows something "likely inflammatory or infectious" BUT they did twice as many images (yuck) AFTER the radiologist looked at the first images, and there is something that looks like lung mets or possibly pneumonia.

CT tomorrow. I am ... not doing great.

morrigan_2575

hugs Yeslama I'm sorry you're going through this, I hope it turns out to be pneumonia (scars)

SpecialK

yeslama - I have had three scares over the last eleven years - all thankfully benign findings - but I totally get what you're feeling right now. Sending positive thoughts that this is radiation fibrosis, benign nodules, or some other incidentaloma finding. We are here for you.

YesIamaDragon

CT this afternoon, and results just came back -- they did upload the images from my local hospital of CT from 2 years ago for comparison -- the pleural nodule on the MRI is stable, and from lung surgery I had 30 years ago, in college. The mets vs pneumonia" seems to be post-radiation changes, most likely.

A huge wave of relief!

morrigan_2575

So happy to hear and glad they got back to you so quickly. Sorry for the added stress but, glad it turned out to be a non issue

SpecialK

yeslama - excellent news, so glad to hear!

Joules44

Hello all! I'm not sure if this has been discussed previously on this particular thread, but I'm wondering if any of you have used/are using estrogen cream to make all things better sexually. I've heard that the small amount of estrogen locally applied has not been shown to increase estrogen in the blood stream. But since we are triple positive, we're obviously at greatest risk for any estrogen at all. I'm just wondering if it's possible to use the cream while on AIs since they effectively shut down estrogen in the body anyway. My oncologist is certainly not recommending I do this but he also understands that quality of life is important too. Just wanted to get your experiences and thoughts on this.

Nsbrown54

Hi Joules44 - when I was diagnosed, my breast surgeon had me discontinue estrace. She said I should no longer use it, that the risk was too high for me, even at small amounts. Perhaps it's based on my specific diagnosis (stage, tumor size, etc) and post-menopausal status.

hapa

Joules - my oncologist prescribed the cream to me. He said there's a lot of differing opinions on whether or not its ok for BC patients, but he thinks the estrogen in the cream remains local and very little if any of it makes it into the blood stream. My estrogen levels have remained undetectable. Most people only need to use it regularly for a couple months, then you can use it sporadically. Even with my MO's blessing, I don't feel terribly comfortable about using it. But I also think there's no point in surviving the cancer if the cure ruins your life.

morrigan_2575

This maybe overkill and, I may come to regret it but, I will be starting Nerlynx 3/22. After a quick trip to Vegas. 😂

It looks like my Safari is back on this year so I shall have to reduce dose or take a 2-3 week break in August.

Joules44

thank you so much for sharing your experience. My gynaecologist, a breast cancer survivor herself is the first person to tell me about the estrogen creams. Her doctors at Emory feel they are safe. Who knows? Everything we do and put in our bodies has consequences good and bad. Thank you again. :

SpecialK

joules - in a conversation with my MO about recurrent UTIs, while on letrozole, he indicated he would be willing to prescribe an estrogen cream, as it has been shown to help. My urologist was not willing to go that route - his wife is an OB/GYN and breast cancer patient as well, and he gave that idea a nope. It turned out that my issue was an anatomical one that I was born with, had corrected when I was in college, which had recurred. The urologist was able to correct it again and the problem was solved so I never did return to the estrogen cream option - all this to say, it was ok with my MO!

Joules44

Thank you SpecialK! I’ve really had to grieve the loss of my old sex life. It has been one of the hardest parts of the breast cancer experience for me. There is so much wrapped up in it and I always thought I would end up being one of those elderly people with an active sex life. I have been trying to come to terms with where I am now and what my body is and isn’t but it’s been tough if I’m being honest.

Laura7770

Finally I've decided to post. Diagnosed 11/24/21with stage 1 TPBC. Mass was 1.5 x 1.6 x 1.3cm and after 6 treatments of Taxol, Herceptin and Perjeta it was measured at 0.8 x 0.9 x 0.3cm. No lymph node or lymphovascular invasion present. My genetic panel came back for CHEK2-157t which is a low penetrance variant. Two genetics counselors recommended bilateral mastectomy and colonoscopy every 5 years. This Thursday I am having my 12th and final Taxol. Mammogram and ultrasound on 3/7. Bilateral mastectomies are scheduled for 3/23 with expanders and eventually implants. If all goes well with pathology I'll finish off with Herceptin and Perjeta for the year. I'm seeing my MO this Thursday and I really want to push for an AI (I'm 44) and eventually a oopherectomy if not hysterectomy. Physically I feel pretty good. I've tolerated treatment well so far. My mind is my biggest enemy. I research too much and my anxiety is really bad. I cry way too much and I know I'm depressed. I'm finally seeking out help. My MO told me my situation is “highly treatable and highly curable" but I just can't shake the fear….I have to give HUGE props to SpecialK for being a guiding light behind the scenes for me. 💕 I'll be having skin sparring mastectomies so any and all advice would be welcomed regarding ALL the things with this journey. I'm 95% ER 95% PR and +++. Blessings to all of you. 💕

1946Taco

Laura - you've had to deal with a lot and make a lot of decisions in just 3 months. Try to be kind to yourself. Many of us need professional help to deal with the PTSD that comes with all this. Sounds like you have a good team to support and advise you. SpecialK is the expert but in my opinion, the discovery of HER2 and Herceptin have been game changers as far as outcomes are concerned. I had a hysterectomy at age 37, way before BC and have never been sorry. My daughter is older than you are and has been worrying about what she will do when she needs to have her Mirana (sp?) removed later this spring. But that is a decision you don't need to make right now. Get the breast surgery out of the way first.

barbojoy

Hey @Laura7770, I too was told by ONC team that my cancer is highly treatable and curable. And, like you--- it doesn't make me feel less vulnerable to all of the risks we face as cancer patients. My genetic panel was negative, so I don't share that particular risk or concern.

I had a skin sparing bilateral mastectomy, but I wasn't able to keep my nipples because I had paget's disease and the skin/nipple on my left breast had cancer. I did surgery first, then chemo, and currently doing radiation. My plastic surgeon placed tissue expanders at the time of my mastectomy and I had planned on reconstruction. However, for me-- the pain of the expanders was too much. They pinched and caused a lot pain when I bent over or stood/sat. So much so, that I had him remove them and do a flat closure before I started chemo. I didn't want to go through the pain of reconstruction along with chemo/radiation. My flat closure wasn't done well and I have what they call "dog ears" (excess skin/fat on the sides of my chest). It is uncomfortable and I may have a corrective surgery to fix that, but for now- I am focused on getting clear of all cancer first. I share this to help you think of questions or discussions you may want to have with your surgeons as you consider your mastectomy and reconstruction plans.

Regarding the fear, I must confess that something inside of me is confident that the cancer has already spread. I am skeptical about what doctors and nurses don't say until it's too late. In my experience, they focus on the positive and on the strong evidence that the treatment plan will be effective. They downplay oddities on scans, for example. My bone scan showed "nonspecific small focus of increased update with the manubrium corresponding to sclerotic lesion on outside CT exam. Could represent fibrous dysplasia however early osseous metastatic disease is a consideration"-- that scan was 09/09/21 and my Onc said she does not believe it is mets and that it is likely from an old injury to my chest. Okay.. I had to just let that go and move on because this was right before chemo and I just had to focus on getting well. However, this is one example of why the inner-voice inside me says that I should be scared and that nothing is certain in cancer care. I hope the fact that I'm scared and skeptical helps you feel less alone. I think that so many of us spend time worrying about how our cancer story will end and it's totally normal. During active treatment, it is obviously front of mind but from what I understand, even once treatment ends the thoughts aren't ever far below the surface.

I hope you have an excellent doctor and that your concerns and questions are carefully considered by them and competently answered/explained to your satisfaction. Best of luck!

Laura7770

Hi @1946Taco It has been a good deal of stress dealing with going from no medical problems to this. I already have anxiety so that factor doesn't help. I agree, seeking out help is crucial, I can't make it through a year like this. My MO also stressed how strides were and continue to be made in treating our diagnosis. It seems I'm the only one that has the doubts/fears when he and I talk. The internet is a double edge sword and I find myself down that rabbit hole and stirs up the doubt. I mean inreality I'm blessed being diagnosed at stage 1a and not later on. I feel at times I need to pull up my big girl pants and get on but I'm struggling. My MO agrees with you, hysterectomy in time, let's deal with the here and now first. Thank you for your words!

Laura7770

Hi @barbojoy The thing is I’m a nurse and I have complete and total faith in my medical team. I don’t feel they are hiding anything from me or sugarcoating but it’s my own mind that’s dragging me down. I know that my MO would be straight forward with me if he felt different and wouldn’t choose the words “treatable/curable” if he felt otherwise. I too am losing my nipples. I have read about the expanders and know that it’s not going to be a walk in the park. All I can is try like you did! In my heart I want to refuse to live in constant fear. In my mind that barricade is still up and I hate it. I have an amazing husband and family and I cannot fathom not being here with them. I fight for them but that son of a b*tch doubt just keeps tracking me down. With surgery coming up in the next few weeks I’m both anxious and terrified. All I keep repeating is clear margins/PCR…this is all too much the majority of the time and I just want to be okay, that’s it! I thank you for sharing your story and I pray we both can find that fork in the road where doubt and fear can be overcome with hope and optimism.

SpecialK

laura7770 - hey girl! Good to see you here! Yay for being almost done with the T portion of your chemo - that is great! Take each step as it comes, it is super easy to go down the rabbit hole, but no purpose is served by worry. It changes nothing and saps today's happiness, energy, and focus. I know that is easier said than done, and I don't always follow my own advice, but I will still offer it as a recommendation.

You guys are sweet - thank you for that compliment - encouraging those that have come after me honors the people who did that for me when I first came on this site!

1946Taco

Laura - see if you can not be the nurse and just be the patient. You have confidence in your medical team and that helps a lot. They will answer your questions and help you make informed decisions. You said you are 1A, your tumors have already shrunk and you have no lymph node involvement. All very encouraging signs for a long life with your wonderful-sounding family. Most of us who still post well into recovery is because we remember the fear and have made it to the other side and want to be here for you. We are. Stay close but set WEBMD aside for a while.

LuvPups0611

Hi all,

My first post, hoping to find some support. Age 37 found lump 11/11/21 appointment with GP to get referral to breast clinic was 11/19. First ever mammogram and ultrasound was 11/23. Radiologist said highly suspicious. Biopsy 11/24 results came via mychart online day after thanksgiving IDC grade 3

The following Monday nurses called to schedule appointments with surgeon/plastic surgeon and oncology. Triple positive 1.7cm.

Surgery scheduled 12/29/21, postponed and rescheduled 3 times due to Covid. BMX finally takes place 1/25/22 sent home same day due to lack of bed space re: covid. No lymph node involvement. Tumor grew to 2.4 cm making me a stage 2.

Oncology appointment on Friday the 4th of March Taxotere/carboplatin/herceptin. Really feeling down hoping I’d have weekly taxol + herceptin.

Please can anyone give me your insight, side effects, anything regarding this regimen. I’m flat out terrified.

Lots of love, hope and faith, Jess

ElaineTherese

Jess,

I did Adriamycin + Cytoxan and then Taxol + Herceptin + Perjeta, so I can't really shed light on the TCHP regimen. I just wanted to wish you the best. I know that I was terrified about chemo, and it turned out to be tolerable. Also, don't assume that your tumor grew; imaging isn't always accurate when it comes to sizing. ((Hugs))

Laura7770

1946Taco- you are so right. I actually get angry with myself for having so much doubt when my MO himself told me my situation is very optimistic. I need to step back from being the nurse and just breathe. Thank you for your reply and your encouraging words! You all are a blessing! Stepping back from WebMD is fantastic advice!