TRIPLE POSITIVE GROUP

LTWJ, thank you so much for sharing your experience. Yes, the big D is pretty awful. I’m hoping to get it in check a little sooner this round. I’m hoping it won’t get worse. I’m glad this is behind you, and I look forward to one day being on the other side. Thank you again for sharing

Hi Ladies! Feeling the love from this board and it is amazing! I can't really talk to anyone in real life other than the hubby (who has been amazing!), and I have been hiding my horrific bleeding from my kids (it FINALLY stopped - yay!). I was worried I would scare my poor six year old daughter to death. Mission accomplished - I totally kept it from her! I kept myself busy with kids activities this weekend, and I have another crazy packed weekend planned - and work is keeping my busy as well. Still no word yet, but that is to be expected - my doctor said 7 to 10 days - she said I might hear this week, but she didn't sound super hopeful about it. Iron is constipating, but helping me recover my blood loss! If I hear, I will certainly let all of you know.

Mad Props to my online village - I can feel you in my pocket!

-Tres

Good morning ladies! I have a question. Is there anyone here who is or has taken Herceptin alone? I'm on it every 21 days for now until I get cleared after surgery. I have weird SE's and am looking for people to compare notes with.

~Nanette

Tres-still thinking positive thoughts for you. Nanette-what kind of weird s.e? I have been on Herceptin alone since last September. I figure most all the weird stuff going on in my gut stems from all the TCH and colitis that landed me in the hospital last August. I had to have had Herceptin delayed several times to reduced LVR but never felt any different. I only have 3 more Herceptin to go.

I have days where I get so breathless (where the least little thing makes me so tired and leaves me feeling like I can't catch my breath)...I had a 'cold ' that lasted exactly 4 days (it came on suddenly...achy, tired, sneezing, runny nose and terrible cough and then it went away on day 4 after a nap) I have days when I'm just so tired and have no energy. My 1st dose of only Herceptin was March 1st. Is there a cycle to the SEs and the dose? I'm feeling fine now and have energy now but that 10 days after dosing was really rough. Compared to when I was on taxol this is a lot easier but rough

nanette- your first dose of Herceptin only was a triple dose of what you had been receiving with weekly Taxol. This is because you will now be moving to every 21 day dosing. It is possible that the triple dose brought on more intense side effects and that you will feel less of that the further away from chemo you get, and as you adjust to the larger dose. I would advise a slow infusion to help reduce side effects. Many oncologists and their staff discount this idea, but I have read and experienced too much anecdotally to think it doesn’t matter. Minimum of 60 mins, preferably 90.The fatigue may be residual from chemo, but you should have an echo or MUGA to check LVEF/heart function if you haven’t had one within the last quarter - this is a symptom of reduced capacity.

Thank you SpecialK, Ingerp, Jstarling. I am quite active compared to during chemo. I had a reaction with my 1st dose..they had me on a 30 min drip which got changed to a 60 min drip and that's where it'll stay until I'm done.

I have been doing some deep cleaning this past week to make up for what wasn't done during chemo. Plus I've been puttering around the yard too. I'm trying to be careful about being in the sun and I do plan on getting my bike out of the shed and riding in the mornings. Pre-cancer I was up to 9-10 miles 3 times a week. But I'll settle now just for a mile or two.

I'm due to have an echo in the next few weeks. MO said every quarter is the plan. I don't have the breathlessness every day just some days and usually of I do something too strenuous like vacuuming the house. I do take a lot of breaks but it just catches up with me. I've increased my nebulizer from twice daily to 3 times when it gets bad. Started back on it when this started during chemo.

I suppose I just need to be patient with myself as Rome wasn't built in a day and my house won't be cleaned in a day either lol

Nanette--the house can wait.

Tresjoli, thinking of you and sending nice thoughts your way!! 🌼 waiting is the worst

Hapa, thank you so much for your insights and the link regarding dairy. I also found the information that milk fat contains almost all the hormones in dairy. So I have cut out butter, cheese and whole milk. I still eat skyr, greek yoghurt (both about 0,3% fat) and skimmed milk. The info in your link is very useful. The levels of hormones are still quite low, they speak about 20ng a day.... when a small child produces around 40.000ng a day and an adult women 500.000ng. I will stick to non-fat dairy for the time being, mostly because of my osteoporosis. Thank you so much for your valuable insights. I admire your eating habbits! 👍

Nanette, I've had 4 doses of Herceptin only so far. I don't see any SE, esp. when compared to chemo. I have some pains here and there, sometimes a tiny bit of neuropathy remaining from Taxol. So it's very difficult to know if any of these are to blame on Herceptin. And I think you still are not far enough from chemo, you may feel the lasting effects for a few weeks yet. The housework can wait a bit 🙂 I had my Herceptin injection today, came home and slept for 2 hours 😀

Nanette, I have had terrible side effects with Herceptin only. Many of them are the same side effects I had with the Herceptin/Taxol regimen. My immune system launches a spirited attack whenever the Herceptin starts, and I have to take even more pre-meds with Her-only than I did with the Her/Tax combo. I have skin rashes, extreme fatigue, the nonstop runny nose (which is a bloody nose more than half the time thanks to a pre-existing blood clotting disorder that requires lifetime anticoagulation therapy), hyperpigmentation on my hands and splotches of my face, a complete lack of appetite (not as much of an issue when the Taxol was included), worse nausea and dizziness than on Her/Tax weekly, and more.

My MO thinks it is due to some kind of problem with my immune system, which has long been hypersensitive and overreactive. The good news is that she doesn't try to pretend it isn't happening just because it isn't common. The bad news is that there isn't much to be done if I want to continue treatment. All of my docs are of the opinion that it will be an unpleasant year for me. Luckily, about a week and a half after the infusion I feel slightly better until the next one. Exercise helps, but it can be difficult to complete a yoga routine when the room is spinning. 😉

I hope your SEs lessen or disappear soon.

Hi MissouriCatLady,

Multifocal is when 1 lump has company in the same area as the original lump. Mine is multicentric meaning my 1st lump spread to 3 different areas within my breast. Of the new 3 areas only 1 is benign but all were very small... under 1/2 cm and smaller than original lump. It's kind of scary when this happened within 1 month of being diagnosed! Here's an article from the forum I recently read and found very helpful

https://www.breastcancer.org/symptoms/diagnosis/in...

Because my lumps are in different areas I went from lumpectomy to mastectomy 😭

Hi MissouriCat, I also had two tumors and BS said because one was at 6 and the other at 9 she would classify it as multicentric but might also be multifocal. She was willing at that time to do a lumpectomy, 2 weeks later I was diagnosed with DCIS also in the same quadrant. At that time she recommended a mastectomy, reasoning was even with getting good margins because you had multiple cancers there is no guarantee other cells might be present that haven’t been detected. Also cosmetic issue, she said with the placement of the tumors a good cosmetic result would be more difficult to achieve. I did also go for a 2nd opinion on MX or lumpectomy, I talked with my OC and also my PCP - they all agreed with my BS recommendations.

I did go with the mastectomy with TE and have no remorse for my choice. The path report came out with a pathological complete response, even the DCIS was gone. They did however find a scarred node which means more than likely cancer cells had migrated but were also taken care of by the TCHP treatment. I have reconstruction surgery at the end of April and am looking forward to moving forward.

I’m glad you got a good response, I think it really is a personal decision- I just didn’t want to worry about it. I still have one native breast so I still do have to keep tabs. Good luck

MACTAZ, Ingerp, and Nanette, thank you kindly for your comments. I am so thankful for the help I can find here, it means so much to me, thank you. Hugs to you, Lisa

interesting, my next H&P infusion will be 12 of 17. I’m so far in now it probably doesn’t make sense but I wish this was out sooner.

Am I reading this correctly, the subcutaneous H had about 6% better result?

wouldn’t that be good, no sitting in treatment center for an hr or so. I must admit I hate shots more than my infusion, doesn’t make much sense does it.