TRIPLE POSITIVE GROUP

SpecialK

keepmovin - the sequence of events will likely be lumpectomy, a short wait for healing - and within the month start chemo and targeted therapy. For a stage 1 patient that would likely be Taxol and Herceptin. When done with the chemo portion and a short recovery time, but still receiving Herceptin, you would start radiation. Either after rads, or concurrently depending on your doc, you would start anti-hormonal therapy. There are lots of us on this thread who have been down this road so if you have specific questions ask away. Want you to know that you can do this! It is scary, but we are here to help.

Taco1946

Keepmoving - If you are over 60, ask about brachytherapy. Mine was started 8 days after surgery. Basically the radiation is internal rather than external and uses the surgical cavity. Twice a day but only for week. I was done with rads before the lab results for HER2 came in. I had a little breakthrough during chemo but I'm a big fan of it.

This journey is less anxiety producing once you have a plan in place and as Inger points out, have some benchmarks penciled in on your calendar. Stay close and keep asking questions. The ladies on these boards all have experiences to share.

keepmovin

Thanks. I appreciate the insights and support

lg10

I just got a call from a nurse letting me know that they have scheduled a CT of my abdomen because I have high liver enzymes. Of course, I am terrified and was wondering if anyone else has any experience with this? I had a full body ct scan and bone scan before I started chemo and they were both clear. I've finished AC and I have 5 taxols left. Could it be possible to have mets so quickly and while on treatment?

Cowgirl13

lg10, I think you will find this link on elevated liver enzymes very helpful.

https://community.breastcancer.org/forum/105/topics/802249

hapa

I also have high liver enzymes atm but was told that was a side effect of chemotherapy. I don't know how high yours are. I'd be surprised if you progressed while on chemo, that's almost unheard of. I think they are just showing an abundance of caution here.

SpecialK

lg - make sure you're not using any pain meds - such as Tylenol - that present any additional challenge to your liver if your function tests currently indicate higher numbers. I agree that this is likely due to the chemo drugs themselves - after all, the liver's function is to clear toxins, but glad you are having this checked.

lg10

Thanks, everyone. I will be so nervous until I find out the results, but I am trying to stay as positive as I can. I feel like nurses I've never met with shouldn't be the ones calling in these situations. I didn't really get any details about my levels, etc. What a rollercoaster.

wabals

High enzymes probably from chemo.

twiggyOR

lg10, my alt and ast steadily increased and peaked one month after chemo ended. Hopefully your results are just normal chemo side effects.

coachvicky

keepmovin... Glad you are going for a second opinion. I think it can bring peace of mind and you may find the second opinion Medical Team is more suited to you.

Best Wishes,

Vicky

Blownaway

Are we supposed to have occasional pet scans, colonoscopies more often than every 5 years, or any tests other than annual mammograms after treatment is completed? What is recommended for b/c survivors to keep an eye out for mets?

SpecialK

blownaway - the level of surveillance is dependent on each individual oncologist and their philosophy, their practice protocols, and where you fall on the spectrum of the disease. Some docs do tumor markers and blood tests, periodic scans, and some don’t. If you’ve had a lumpectomy I have seen alternating mammo and MRI, but not everyone does that. The organizations responsible for advising on this don’t really endorse regular monitoring in the absence of symptoms for early stage patients. This goes for colonoscopies - more often than 5 years if you have a diagnostic need, otherwise no.

Jstarling

I have just had tomorrow’s TCH (#5 of 6) postponed because of low (51) platelets. This is the second time this has happened. I am worried that these postponements will make my treatments less effective. Has this happened to anyone else

moodyblues

Jstarling, that happened one time to me and my oncologist said that it happens and not to worry. I was told that it was much too dangerous to have a treatment on top of such low platelets. It all eventually evened out and I was able to resume my treatments.

Jstarling

This is depressing. Not only did they postpone chemo until next week but have suspended Herceptin because of last week’s MUGA test results. Do I have a chance to go back to Herceptin? How do they decide? I have a doctor visit the week after chemo (next Tuesday if the platelets rebound).

moodyblues

I'm not sure of the answer to that Jstarling. There was a lady who had to postpone H (took a small break) and then resumed. I'm not sure what happened after she resumed....I think she was able to tolerate it the second go round. Perhaps Specialk can help with this answer.

Ingerp

Hey ladies--question for those who are/have been on Herceptin only following Taxol. I know SEs tend to be minimal, and that you don't get any pre-meds. I'm actually looking to book a weekend away shortly after I finish the T. In that three-week cycle for the H, is there a time you felt better/worse? Is the first couple of days <potentially> rough, like with chemo? Do you think it'd be smarter to look to travel right after an H infusion? Wait until right before one? Doesn't matter??

moodyblues

Ingerp. Are you saying you are only having Herceptin now? If so, when I did the H only, I was fine. I did at one point have flu like symptoms the third day out BUT it only lasted one day. I personally found the H quite easy. I know Hapb had some issues but I breezed through it.

Ingerp

moodyblues--not yet. I have six more Taxols but I do like to plan things. :-) I've heard about the flu-like symptoms, but you think like a week past infusion would be okay? So sweet spot maybe a week after up to the next infusion? (FWIW--I'm looking at special offers at WDW!)

hapa

Jstarling - I think if the heart recovers they usually restart the herceptin and continue to monitor it. If not, then they don't. Hopefully your LVEF will go back up but I've heard it takes a while. As for having the chemo delayed, if you read the monthly chemo threads, a lot of posters had delays of a week or two due to blood counts so I don't think it's abnormal.

Cowgirl13

Jstarling, I had my 5th chemo TCH postponed because of low platelets. It just happens to some people and at that time I didn't know enough to be concerned about the postponement affecting the efficacy of treatment. They might have given me herceptin that time but I can't remember...it was 9 years ago!

SpecialK

jstarling - for your situation and concern about treatment delay and efficacy, it is important to remember that you are receiving adjuvant chemo and targeted therapy. Your known cancer has been removed and you are not relying on systemic treatment to eradicate a tumor, it is being given as an insurance policy. You had a small grade tumor and were node negative - those things work in your favor. A delay is unlikely to be a problem, and is more common than you might think. For the MUGA result and suspension of Herceptin, they are looking for a rebound back to a normal LVEF range before resuming.

Ingerp - I had no issues with H only infusions that would have made a difference in scheduling anything.

Ingerp

Thanks, SpecialK—good to know.

LaughingGull

Ingerp

I will have my three Herceptin + Perjeta infusion tomorrow and in the two prior ones I didn't notice any side effects on any day. Nothing at all.

LaughingGull

Homemadesalsa

Same here- no side effects from Herceptin and Perjeta except for the "herceptin drip," that makes your nose run. No big deal.

deni1661

Ingerp - I traveled a lot for work throughout my HP treatments and didnt have any issues other than fatigue. I rested the day after infusions but was good to go by the next day. I felt the best at the half way point in between infusions so a week or so after your H treatment sounds perfect. Good for you that you are planning a weekend get away 😊

Ingerp

Laughing/Homemade/deni--thanks so much for the responses. I am getting a little antsy to get through the T phase--just so I can lock in future treatment dates. I still have a weird fear of being told I can't get tx on a particular day after the bloodwork comes back, although I get that that is rare (-ish). One weekend I'm looking at would be two weeks after H, which I gotta think should be absolutely groovy.

If anybody wants to weigh in--I'm also curious how long after T you felt like it was out of your system? I should be done first week in August. I feel like a couple of weeks after that, life <pretty much> gets back to normal.

Ingerp

And shit! I literally keep forgetting I have rads coming up. I check in with my MO this Friday for the first time since starting tx and my questions will all be about timing of everything I've got left.

tld2017

I have searched online for an answer to this but can't find one so I'm coming to where I know someone might have some insight on this! Tuesday, two weeks ago, I had a mammogram just to check on things after chemo was over and before rads start (tomorrow!). The very next day, I had my radiation simulation for Accuboost, which was a major squish for about 5 minutes (makes the mammogram seem like a walk in the park). I am still so sore under and around that breast. Can this be normal after 2 weeks? I called my breast surgeon's office and spoke with the nurse and she "thought" it was normal but I'm not sure... I've never been sore for long after previous mammos but, of course, now I've had a lumpectomy on that breast 5 months before and additionally had the accuboost simulation, which was quite painful. I know that I am being paranoid and thinking that there is something wrong, and the mammo did come back clear, thank goodness. But I've just never heard of being sore this long after a mammogram. What do you ladies think?