TRIPLE POSITIVE GROUP

Hi all,

I had my port removed finally - yay - it’s been about 10 days and I still have a small lump where the port was (it looks like my port only smaller) - I’m guessing it’s scar tissue but did any of you have this and did it get better? I will not be happy if it stays like this 😕 Grrrrr

hapa, Taco196, MACTAZ, Kat22, SpecialK, ElaineTherese, Princess_meg and all:

Thanks so much again for sharing your experiences regarding the post treatment schedule.

Sububs and Wheatscapes:

I would like to share my wife's scan experiences here, it really got a lot of emotions involved at least.

We used to mention to the BS, two MOs and RO a few times about if my wife needs a scan and they all said no. The BS even said it is simply waste of time and money. However, my wife's vision got worse during the TCHP and was not getting better a couple of months PFC. We were very concerned about that and during one of the visits for HP infusion we asked the MO about the scan again and she said if that is the really what you want for the peace of mind she could order that but she expected nothing will show up. She then ordered both "CT Chest/Abdomen/Pelvis W/Contrast" and "MRI Brain W/WO Contrast". The MRI Brain(which we were concerned most) did come up without anything. However, the CT Chest came out with "Right lower lobe pulmonary nodule measuring up to 1 cm, suspicious for metastasis given the known history of breast cancer. Recommend correlation with PET/CT or tissue sampling". We were so freaked out by the result. The MO said since the radiologist did not necessarily know my wife's history, the impression they concluded is not accurate and the nodule is really small so we should not be too concerned about it. She also said we can wait for six months to get another scan and see if there is any changes. However, a couple of days later she contacted us again that, after they discussed in the tumor board meeting, it is better to know what the nodule is and if there is any activity from that nodule. So she ordered a PET/CT. We did and were hoping this would finally clear out everything. To our huge surprise, the PET/CT result said "Posterior right lung nodule with intermediate activity. This should be regarded with suspicion. It would be amenable to CT-guided biopsy." I spent quite some time to understand what the PET/CT report meant and what the SUV is. Although I did notice that the "intermediate activity" for the lung nodule corresponds to a SUV of 2.6, which is equal to what the liver's SUV (a reference value) and is not exceptionally high, It did not bring the peace of mind as we hoped!!! Instead, we both were extremely scared. To make things even worse, the BS (the chief of breast surgery in the Division of Surgical Oncology) said to us that, when the tumor board meeting discussed my wife's again, they were all surprised by my wife's PET/CT results and he believe it is 90% of chances of a lung mets. I was stunned like crazy when he said that. I asked how he concluded that and he said based on the radiologist's report and demo. Then I pointed to him that the SUV for the lung nodule is not super high, would that need to be taken into considerations as well and the chance of a lung mets can be lower? He seemed to be a little surprised by that and said if that is the case, he would change the chance to 50%, which is still not small to us at all. Anyway, the MO said she is not compelled to have my wife to do the biopsy but the only way to make sure what the nodule really is to do it and she ordered that again. A few days later, the biopsy result said "negative for carcinoma". What a relief!!! The biopsy also said the nodule was caused by an infection. My wife then saw an infectious decease Dr for that, she is taking medications now. A fully recovery is expected in a couple of months

My scan story is similar to Lily's but without the resolution at the end. I had three very small lung nodules that were too small to biopsy: 4mm, and 2 at 1mm. We scanned them again after chemo and only the biggest one came up, at 3mm this time. Scanned again after radiation and now the radiation fibrosis is obscuring them so who knows. So far I can still breathe, so I just try not to think about it.

MACTAZ - good luck with your reconstruction revision. I had one about a month ago and feel so much better now! I didn't get a brain scan, but I did have a head and neck MRI about seven years ago that showed a very small tumor in my pituitary. Doc at the time told me not to worry about it. It's never been checked again. I'm perfectly happy to just stick my head in the sand with these things since there's really no better option.

MACTAZ, thanks so much for your warm words, we really appreciate that.

hapa: since your nodules are so small, they should not be a problem. Do not worry about it.

Kimm - Thanks for heads-up on Nortriptilyne (sp?) for cervical pain. Will remember that if I need it during chemo.

Lily, Mac, hapa, Angels - Thanks for sharing your scan experiences. Never a fun issue, from what I gather. My NN calls it “Scanxiety.” I can see why! 😬🥴

My MO made it back to work this week and said I’m all good on the lung nodules. I’m not going to press the issue; I’m not terrified anymore and want to stay that way.

Happy 4th of July to everyone in the US!

Hi Jkeet!

((Hugs)) Sorry you had to join our club.

Your particular treatment plan may vary depending on:

1) the size of your tumor;

2) whether or not any nodes are cancerous;

3) what country you live in; and

4) your doctors' preferences.

Most breast cancer patients with triple positive get surgery, chemo + targeted therapy (e.g., Herceptin and/or Perjeta), and a year of targeted therapy by itself (without chemo). Many also end up doing radiation. Some go on to take a medication after targeted therapy called Nerlynx (pills). All are prescribed hormonal therapy (a pill), though some find the side-effects debilitating.

I found it easiest just to take things one step at a time. I did chemo first (large tumor), then surgery, then began hormonal therapy during radiation and my year of targeted therapy. I'm still doing hormonal therapy. It is definitely a marathon and not a sprint, but most of us make it.

Jkeet, sorry you are here but know you have a group of people in this forum with a wealth of knowledge that can help you ask the right questions to your medical team. It is a long journey but we are here for you. Mine started 10 months ago and almost 1 year to the day I will have my last infusion. I had neoadjunct therapy first (chemo- taxotere and carboplatin for 6 infusions every three weeks along with herceptin and Perjeta), surgery, than 11 additional infusions of herceptin and Perjeta. I'm also n hormone therapy for at least 5 years. The good news was I got a PCR or pathological complete response meaning no remaining cancer cells. So while it is a tough journey there is light at the end of the tunnel. Thinking of you.

Oh shelabela. I'm so sorry to read that you have had further health issues. I hope you do find the answer, and that your doctors can treat your symptoms so that you can function at your best. And Happy 4th to you too (and all of you triple positive ladies)!

Julia,

Personally, I worked through chemo, radiation, and targeted therapy. I also went back to work the day after my lumpectomy (for a half-day). But, everyone is different. It may depend on how your body responds to chemo. Also, you may need more time off from work if you choose a mastectomy and reconstruction (can require multiple surgeries in some cases).

Once you know your plan, you can talk to your supervisors at work about how you plan to fit treatment into your work schedule. I asked my supervisor to reduce some of my responsibilities during chemo, which he supported. Also, I was able to reduce my hours on campus. I was in the office two days a week (Tuesdays and Thursdays). I did my chemo on Wednesday, and worked at home on Mondays and Fridays. That worked for me because the chemo side-effects would hit on Friday, and I could work in bed (and close to a bathroom -- diarrhea!) with a laptop.

It helps if your employer offers short-term disability. Now is the time to figure out what your employer offers in that regard. You could use it for chemo or save it for surgery/post-surgery. Also, don't forget FMLA. If you've been at your employer for more than a year, and your employer has more than 50 employees, you can take 12 work weeks of unpaid leave to recover from a serious illness. ((Hugs))

Hi, haven’t posted in awhile but finished 12 weeks of T+H at the end of April, with cold capping that kept 60-70% of my hair. I’m now on balance of year of H, and although I was treated in the US I’m assigned in Europe and have returned and started SQ herceptin. Coming to a theatre near you in the US soon! There is no question I think given the cost of infusion bays and the ease that it will become the norm if possible with most patients.

I thought this group might want some quick views/considerations on it:

1. Speed. Shot takes 5-7 mins max. Wow!

2. Experience. This is not a flu jab. The needle has been to be placed sub q and the nurse pushes the contents for a little while. The push time feels fine. The insertion and removal of the needle are the nasty bit. It stings both ways and you really feel it. The good news is it’s pretty fast. Grit your teeth and remember it’s done fast overall.

3. Bloodwork. With H alone I don’t get bloodwork every time but when you do, you are still using your port or getting a draw at some of your H visits. So a needle plus port access or 2nd stick.

4. Port care. If you keep the port for any instance where maybe you might be away from an SQ herceptin facility (ie while it still gets rolled out in the US or for me, when I travel back), you need to keep it and have it flushed anyway.

5. Effectiveness. All the studies I’ve discussed with multiple MO’s have no concern with non-inferiority or with switching back and forth from SQ to intravenous as needed - helpful for travelers or someone who moves etc while SQ is not standard in the US.

6. Side effects. The biggest SE I had from stand-alone infused H was nausea, which surprised everyone as I was fine through T+H - but I got anti nausea then and the first H alone I got nothing and was ill. Subsequent infused H with Kytril I was fine. And now, SQ H - no anti nausea meds needed at all! No bump or residual pain at the injection site (thighs). Still the runny and bit bloody nose I’ve gotten used to though. Better than T+H but not gone now if ever til H is finished.

As for the rest, hair has started to bounce back and I’ve followed the no heat/products etc post chemo as directed, but can set it on rollers like Mad Men and the chemo curl effect holds the look for days. I use powder root cover to soften the grays hair color used to keep from my view. I also had reconstruction end of May and given everything I’m pretty happy with the results at this stage. So much better than TE’s!

Hope that helps anyone looking for SQ H info as it rolls out in the US or for post cold cap etc experiences.

Hang in there - summer bonus tip - at least for me, mosquitoes either avoid me completely or the idiot ones who even try literally die mid bite - so chemo and/or H must be doing something! I was always a mosquito magnet and my husband is the popular one for the first time in 28 years. Big price to pay, but small victories have meant a lot as have humorous moments amidst the chaos!

I’m curious how many of you have shortcut your profile diagnosis so it isn’t so long. I’ve looked all over where it could add an abbreviated version but can’t find a way to do this.

My wife had the last HP infusion this morning. It has been a (long) year and I am so glad it is over..

So happy for you and your wife LilyCh!!!!

Thank you LaughingGull, I will see if I can figure it out. Mine is getting to long

Hi, what is AI? I am new as well, haven’t even seen an oncologist yet, just diagnosed as triple positive. Also, does everyone get a Nuelesta shot after chemo? Thanks.