TRIPLE POSITIVE GROUP
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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
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Awesome tresjoli!
I just logged in to check on you. Bleeding for a yet to be determined cause is super annoying and disturbing. So glad to see you are in high spirits.
LaughingGull
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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
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Tres - glad to hear you're keeping busy. I am not a doctor but I think the fact that the bleeding has stopped is probably a good thing, maybe your periods have come back with a vengance?
JaBoo - I was vegetarian before BC but ate a lot of cheese, up until I went vegan which was only a few months before dx. I am now somewhat pescatarian for the time being (until my blood levels return to normal). I found this website which quotes a study (which I cannot find online - I like to check original sources) that says there's more hormones in organic than conventional dairy (in the US). However, I also read another study which said exactly the opposite. Both studies agreed that higher fat content correlated to higher levels of hormones, and I've also read that curds contain more hormones than whey. One thing is for certain: the cow wouldn't be lactating unless there were lots of hormones in the body. They are no different from humans or any other mammals in that regard. I eat dairy on rare occasions but have cut it out of my every day life, and am adamant that no butter is in my food, as that seems to have the highest levels of hormones from what I've read.
Just got back from a dive trip in the Caymans yesterday and I have my LAST HERCEPTIN at 12:30 this afternoon!!! I think I'm going to float out of that freaking cancer center! Also, I rescheduled my chest CT to after my next appt with my MO. I'll ask him if there's any point continuing to do them.
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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.
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Tresjoli hang in there.
hapa I must say I'm a little jealous. I actually think that <like the end of chemo> I might burst into tears after my last one.
Nanette--yes, what kind of SEs? I can't say I've experienced none, especially after it seems like everyone told me I wouldn't even notice these infusions. I definitely have the on-going runny nose, and I always feel off the rest of the day. Sometimes just a little tired, but occasionally I feel like I've been knocked on my fanny. One time driving home was a real challenge--like I'd had a lot to drink or something. I think I posted earlier that I got it in my head that I wasn't getting enough protein, so starting a couple of sessions ago I had red meat the two nights before I got the Herceptin. I've felt much better since doing that. I go in this Friday--after that three more. :-)
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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
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Nanette. Be sure you have a Muga/echo scheduled at least every three months to be sure your heart function is acceptable.
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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.
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Yes--I'm guessing you're still feeling the after-effects of chemo. I was a little surprised when I heard my first (triple dose!) Herceptin was just a week after my last Taxol. The every-three-week schedule started after that. And I hate to bring this up but how is your activity level? Getting in a little exercise might help your energy level.
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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
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nanette - what is your hemoglobin? You may be a bit anemic and that can cause shortness of breath also. Usually hemoglobin drops from chemo - annoying, but normal - then recovers during Herceptin only infusions, but it can be a slow process.
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Nanette--the house can wait.
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ergh...still no word. I know that is totally normal...but..just...erghhhh! Tick tock...
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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 😀
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I only did 8 taxol/herceptin. Stopped the taxol due to very painful neuropathy. Took several weeks for that to go away and I assume that any other SE's would take a while to subside. My MO gave me the first every 3 week herceptin the week after the combo. First one was 90 minutes but I tolerated well enough to go to 30 minutes. Ask them to slow it down if you are having trouble, especially during infusion.
Heart problems are a SE of herceptin. I had a baseline Echo before I started chemo and then every 3 months. Last one three months before I finished H only. I think that's pretty standard.
I admire those of you who do, but I haven't been willing to make many diet changes. I have managed to get below my BC weight however. Exercise helps but ease into it. Be sure to stay hydrated.
Tresjoli - hoping for the best. Waiting is the pitts...
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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.
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I have a question, please. I have 2 tumors and a cancerous lymph node, and my ultrasound showed almost nothing yesterday. My surgeon called to give me a good result this morning and that was about all he was going to say. I asked him, does this mean I can have a lumpectomy? He said we could consider a lumpectomy, but he needs to sample the areas to make sure they are not multifocal. I do not know what that means. He said we could talk about this in detail when I meet with him at my appointment in 2 weeks. I asked him if he could sample the areas with a lumpectomy, and he said he could do a wire-guided lumpectomy, and we had talked about this before, I remember that procedure. I meet with the plastic surgeon too, before meeting with my surgeon, and I guess will just ask for basic reconstructive information, since I am not 100% sure which surgery I will be getting. Would anyone be able to help explain multifocal to me, thank you kindly. I have IDC and have finished TCHP chemo, which did the job of shrinking things. Lisa
I should add, I have the cancerous lymph node, and two tumors in my breast, one of which tested benign on biopsy. I am reading a little about multifocal, and think this plays a role in what he is looking for - is that benign tumor really cancerous? The surgeon mentioned when I saw him before this ultrasound that he was concerned that this "benign" nodule shrank with my previous ultrasound in December. Hope this makes sense, thank you.
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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 😭
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Nanette, thank you so much! I am sorry you went from lumpectomy to mastectomy. I have a feeling that may be my path after all is said and done. Many hugs to you. Lisa
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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
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MissouriCat I was just going to say I have no personal experience with this but from what I've read, I *think* it all depends on where the multiple areas are. If they're close to each other, lumpectomy may still be an option. If not, then, . . .
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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
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Anybody planning on talking to their MO about this?
https://www.fda.gov/Drugs/InformationOnDrugs/Appro...
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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?
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Okay I talked to a nurse at my cancer center and she said it just takes a while following FDA approval before it all trickles down to general use. It sounded like there's no way this happens in the next nine weeks (when I'll have my last Herceptin only) but I believe that in the near future women will be getting a shot every three weeks rather than an IV (or port access). Hooray??
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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.
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MACTAZ--I swear that even though it's only a 30-minute infusion I'm usually there for two hours. It's not really the time so much, though--a shot just seems so much less invasive than an IV. I'm also wondering if this will decrease the percentage of women getting ports?
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so true about the time, it always took me over 2 hrs also. For some reason Perjeta is 60 minutes but I just got the herceptin cut to 30 minutes my last infusion so that helps.
I don’t know about the port, I don’t think I could have done the chemo without it. I really haven’t had any issues with it, uncomfortable yes, but for me was easier than the thought of IV in vein.
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Re: ports -- my (first) MO refuses to do AC chemo without a port, so there's that.
I get a monthly injection (Zoladex); it usually takes about 20 minutes with all the paperwork, inputting stuff into the computer, and getting everything together. I'd bet most women would appreciate an injectable Herceptin pill.
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