TRIPLE POSITIVE GROUP

beingpresent - coachvicky has not signed on to this site since July so she may not see your message. FWIW my daughter has ADD and has taken Adderall as an adult, which is definitely a focus drug for those with that diagnosis, and others with metastatic disease do take it to help with fatigue. Adderall is amphetamine salts, a stimulant, if you read the contraindications and potential side effects it could actually make PTSD worse. Not saying that is universal, but I would advise using it under the guidance of a provider with a specialty in this type of medication.

emily - who ordered the MRI? Were you able to let the ordering physician know about the discomfort you are having in that area? Has the area been examined by the ordering physician? Is there an instruction to the imaging center to make sure to include that area, if possible, in the breast MRI? It is possible that your ribs on that side may be included in the regular field of view in the breast MRI, but I feel it would be a good idea if the imaging center is notified ahead of time to please concentrate there in addition to the breast, if at all possible. Additional imaging for bone is usually a nuclear bone scan or PET/CT, and could be utilized if something is spotted during the breast MRI, or if the pain persists and nothing shows on the MRI.

Hello. I signed up a few days ago and am completely unsure about any of this. My adoptive mom has been diagnosed with triple positive. It was bit of a shock since we expected estrogen positive due to Long term HRT use and her age (82)

She saw the surgeon before the markers were identified. Her cancer is 4.9 cm in her right breast just under the nipple and he can’t save that. She also has a 1.1 cm lymph node that showed on the ultrasound and the biopsy confirmed it’s also cancer.

At the surgery appointment, he said she would not get chemo just radiation. Again, this was before the triple positive was identified. He said they don’t use chemo on people over 80 and he is confident he can get all the tumor. Does anyone have any experience with triple positive in this age group? Everything I’ve read said chemo for this cancer and this was just the surgeon, she hasn’t seen an oncologist and won’t before surgery. She has a PET on in a couple weeks, 2 days before her surgery

Despite her age, she has nothing else wrong with her. Her only medication is thyroid hormones for hypothyroid.

Any help would be appreciated. Thanks!!

I agree that this is the oncologist's call, not the surgeon. And it's your mother's! Now that you know her positivity status, see if you can move up the MO appointment so you have some additional clarity about a plan. You're right. Standard treatment for TP includes chemo. The chemo regimen is determined by tumor size and characteristics but I think we've all had chemo. A lot of women are now getting chemo pre-surgery. There is.a term for it but I am too old to remember!

I'm certain there is at least one person on this thread who was over 80 at diagnosis but can't remember who. Hope she chimes in. There is also a thread for "older women" - it's a small group but we are pretty chatty.

Most of us are surprised by a cancer diagnosis and it is an extremely stressful time. Covid hasn't helped as you may not be able to accompany her to appointments. Since most offices are now set up to Zoom consultations, she may want to inquire whether you can join her that way. I know DH always had lots of questions that I didn't think of when he wasn't with me.

Questions are always welcome here so come back often.

Lovemyyorkies - So happy to see you post today. I've been thinking about you but obviously we've been on different threads. I stopped Taxol after 8 sessions because of very painful neuropathy in my feet. I had Herceptin, not Kanjinti, but had NO problems. I was comfortably getting the infusion in 30 minutes. If you aren't, you can have them slow it down.

The AI's. More trouble. Very much another menopause. Achy joints, hot flashes, thinning hair, mood swings. I was angry a lot. While all the AI's do have some SE's, work with your MO to find the one that has the fewest FOR YOU. Mine didn't but some doctors have you take a smaller dose - half a pill or a pill every day - for a few weeks. Pay attention to the manufacturer. That too sometimes makes a difference. There's a thread called "doing well on AI's" which I recommend. Remember that people who are doing well are less likely to post than those who aren't.

Haven’t been on here for a bit, but wanted to follow up and share that we did decide to go with the Taxol+Herceptin for 12 weeks, etc. The final deciding factor was the high nature of my HER2+ (97%) and both MO’s said that was the kicker.

It was good to have all 3 of us in agreement. Ready to get this over with.

My port will go in on 11/10/2020 and the first THP round is on 11/12/2020.

Trying to keep myself busy and get some things in order. Any tips on things to have on the ready? I know everyone responds differently but I feel better if I think I might be able to plan for something ... appeases my controlling side. LOL!

Hapa, SpecialK, Taco1946, AnnatheBrave, Cowgirl13 thank you for all your Earlier feedback and comments.

GG202. - glad you are comfortable with your decision. I only had Taxol so can't help you with what to expect. I'm certain that there is a thread just for that - there is for everything else.

GG, as others have said, it isn’t as bad as you might expect! I just finished last Thursday. My treatment is different from yours so I won’t comment on my particular experience in terms of what to expect but I think it’s important to hear that it probably won’t be as bad as you might expect! Someone on these boards told me that before I started and she was right and it really helped me approach the experience with confidence. Make sure you stay in touch with your care team when you experience side effects or weird symptoms bc they will often have a solution or suggestion to offer.

Hi tld,

I had double mastectomy so I don't deal with mammograms, but I totally understand your fear -I recently had a bone pain scare, got a bone scan (which thankfully came back clear) and I was surprised by the intensity of the anxiety, terror and panic that I experienced during the period heading to the scan and later while waiting for the results.

My conclusion is that I need to get better at living with this fear. Learn to better recognize it, acknowledge it, face it, manage it. I am in a meditation group, which helps. If you look at your chances of recurrence, they are low. Your cancer was slow growing, from what I see in your signature. I ended treatment with Herceptin-Perjeta on March 2019, and Nerlynx on April 2020, and since then, additional data on the long-term benefit of both drugs was published, which is very, very encouraging. You have many reasons to feel hopeful. I encourage you to take a good look at the numbers and take reassurance in the fact that you got very good treatment that is likely to keep your cancer at bay.

Also, one of the reasons I got a second, prophylactic mastectomy, is that I didnt want to deal with mammograms. My breasts were extremely dense and cancer never showed in my mammograms, so they were only going to cause me worry. I did this second mastectomy a year after the first surgery. You can change your mind down the road and get a mastectomy if you think it will give you peace of mind.

Best to you, take care,

LaughingGull

Covid really has made an already complicated situation infinitely more challenging, from the absence of tangible support from family and friends due to their need to remain distant to the childcare challenges presented by virtual learning to, of course, the increased health risks and the accompanying stress. It’s so hard and frustrating.

I just finished TCHP and am about to have my first HP-only infusion before surgery (after which I’ll either remain on HP or switch to Kadcyla). I was wondering if anyone experienced a worsening of lowerGI symptoms after switching just to HP? I had diarrhea, albeit relatively mildly, my first round of TCHP, but each round after I was actually pretty constipated and never had diarrhea again. I’m wondering if maybe the combo of carboplatin and zofran might’ve counteracted the effects of Perjeta and if the diarrhea might return. Anyone experience anything similar?

Anna I had pretty bad diarrhea on TCHP. I had 1 dose of solo HP and didn't have diarrhea. I'm on Kadcyla now and, constipation is the main SE (for me)

Anna: I had horrible constipation on TCHP, which didn't improve much on HP, then H, and now Kadcyla. At least now the laxatives are working better though. I am sorry!

Hello everyone..

I was diagnosed with ER+ IDC in Sept 2020. I had my lumpectomy Surgery end of Oct 2020. All along the Her2 status was negative with the initial breast biopsy and surgical pathology had come up as 2+ equivocal and today FISH came out as positive. So that would make me TP. This is a new twist to me and I am not sure how the treatment plan is going to be. MO will call me tomorrow so will know more as we were planning to start chemo next week or ding these results.

How have things been different for you from other Her2- cancers? What additional treatments do you go through? What do you have to look out for? Is this type of cancer hard to treat and more aggressive? Any info would be greatly helpful. Please let me know how you have done since diagnosis.

Thank you!!

Pretty much what ElaineTherese said. There's a lot of treatments and it's longer. You'll get Chemo proper + HP (targeted therapies). These treatments (HP) will go on after you complete Chemo until you get to 18 infusions/cycles (basically 1 year). Beyond that, you will get Hormone therapy (Tamoxifen or AI) and, maybe Nerlynx (preventative pills for HER2+) which you would take for 1 year, only after competing a year of Herceptin.

I'm sorry you had to deal with this twist.

Hi!

I feel good! I'm a little creaky, thanks to the hormonal therapy (Zoladex + Aromasin), but I'll be off of that in a year or so.

Chemo before surgery is a relatively recent phenomenon for TPs. For the most part, it was a response to the development of Perjeta, as this targeted therapy was only recommended for pre-surgical treatment in TP patients who had tumors that were two centimeters or larger. Yes, neoadjuvant chemo does give you some idea as to whether chemo was an effective treatment for your particular cancer. However, plenty of TPs have done just fine with a surgery-first treatment protocol. In my case, the best thing about doing chemo first is that it wiped out the active cancer in my breast and compromised lymph node so I could opt for a lumpectomy.

I'm not sure what you mean by protecting your right side. Chemo + targeted therapy is systemic -- it is designed to kill cancer cells that may have broken off from your tumor and are circulating in your body, looking to find a new home. Chemo is particularly effective against Grade 3 cancer because it is designed to destroy rapidly-dividing cells.

Yes, recurrence can still happen with TP cancer, but, thanks to targeted therapies, it is no more likely to recur than ER+ cancer.

RE: side effects from targeted therapies -- some TPs claim that Perjeta gave them diarrhea while they were doing either Taxotere + Carboplatin + Herceptin + Perjeta or Taxol + Herceptin + Perjeta. My oncologist says that the diarrhea could also be from Taxotere or Taxol as the taxanes generally cause gastrointestinal distress. I did have diarrhea after my Taxol + Herceptin + Perjeta infusions, but I could manage it with Imodium.

I did Herceptin alone after chemo; TPs these days often do Herceptin + Perjeta after chemo. I had no side effects from Herceptin alone, but not everyone is so lucky. Herceptin can cause heart damage (which is often temporary). Anyone receiving Herceptin should have regular heart scans to make sure that the heart is still functioning properly. In my case, Herceptin alone was WAY better than chemo.

Good luck! Hope you have a good meeting with your oncologist.