TRIPLE POSITIVE GROUP
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thanks elaine
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kae, that all sounds like very encouraging news
As for time off, i did four rounds of TC chemo spaced three weeks apart, and had my son stay with his dad for the first week of each round. Weeks two and three were almost ordinary each time. I didn't even need a full week to recover each time, but it was nice to have that time to rest. I'd estimate you would want to ask your husband to take two days off each round, maybe more maybe less. But two days per treatment seems like a reasonable ballpark to me. We are all different in how smoothly it goes, though, and you won't really know until you know.
It is wonderful he can take some time off to help you recover! You are fortunate.
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tunegrrl,
my husband works 12 hour shifts/ 3 times a week... i am trying to figure out the best times for him to schedule himself as they do does self scheduling at work.maybe off on my chemo day and then work on my day 2 and day 3 post chemo, then off on day 4?...i know we all have different reactions so i wont know until i have my first cycle.
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Actually, Day 3 can be pretty bad. By then, the steroids will have worn off. I did my chemo on Wednesdays, and the side-effects would kick on on Friday (Day 3). But, by Monday, things were looking up.
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thanks elaine! will keep that in mind.
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Yes my oncologist told me that for most people days 3,4,5, and 7 are the worst (oddly skipping day six). But for me chemo day itself was smooth sailing then it kicked my ass that night and the next day, easing off from there. Drained and tired by day four but nothing more troublesome than that.
Having what you need to treat the side-effects is the name of the game. Zofran saved my hide after a bad spell in round two. Makes all the difference in the world if you can treat the side-effects.
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Tunegrrl,
did you take Zofran even if you did not feel nauseous?i see you took Lupron?my surgeon mentioned that in our discussion since i have endometriosis and simple ovarian cysts right now...
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Chemo was hard on me. Despite drinking lots of water, I was still severely dehydrated. They said the water I was drinking was going right through me and not reaching the cellar level, or something like that. I started going back to the infusion center on day 4 for extra fluids and that helped a lot. I recommend asking for extra fluids if chemo is really wiping you out.
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Hi everyone. This is my debut on the board. I have been reading your posts, growing stronger, educating myself and learning from you. Thank you.
After 22 years of annual mammograms and call backs, my number finally was called. It has been a whirlwind of appointments and spells of high anxiety. I must say this once. Had I seen the radiologist reports 10 years ago in lieu of the beautiful letter saying all clear, then I probably would have joined you sooner. Shoulda, coulda, woulda. I have a new first class medical team and I am now on that road with you, just had my routeupdated in time.
The month of January was spent attending a IDCDCIS seminar, generally between 2 a.m. and 4 a.m. every night. Yes, "sleep more and don't read stuff on the internet" were two instructions I ignored. Thanks to everyone here, there have been no surprises. My notes are prepared in advance and I don't need to write down what I am being told. I have most of what to expect on paper and understand the terminology and jargon when meeting the team. Confirming my understanding during the staging process appointments worked for me. I focused on new information.
Day 3 of TCHP and I am doing ok. Frankly, I must attribute that to the generous spirit of sharing, plain talk, real talk, comfort talk, serious talk, funny talk, and happy talk I found here. So, please keep talking around this virtual round table. Even if a post receives no reply, I can say with assurance that I am reading or someone else is.
Again, thank you.
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welcome suburbs!! this is a great site to be in at this challenging times... will do neoadjuvant chemo, not sure yet what chemo meds yet but i could be in your shoes in the days to come..
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ladies, i know somebody who's chemo was cut short because of severe neuropathy. may i ask what supplements/preparations you did that helped with chemo induced neuropathy?i am currently taking biotin and vit b complex. i have heard about icing fingers and feet....
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Thank you Kae. Sending lots of positive reinforcements to you during the staging which was 100 times worse than the first chemo so far.
FWIW, During nutritional counseling, I was instructed to take no supplements and avoid soy. For protein powder, hemp powder and rice powder were recommended along with fresh fruit and Greek yogurt for smoothies.
All the best, Suburbs
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Suburbs,
we are diagnosed around the same time but im lagging behind with treatment due to insurance change. i am going to meet with my MO on thursday and then i will know what chemo i will use neoadjuvantly. did you have pet scan? did you have biopsy of LN's? so far my mri is clear but i want a pet scan just to be sure.also, did you have 2 d echo or muga scan? i think i will also request for a nutrition referral.thanks!
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Hi
Recently diagnosed with a 2.6cm, grade 2, ER, PR and HER2 positive tumor. Lined up for chemo, radiotherapy & herceptin. Had 2 surgeries - one to remove the tumor and one re-excision as the margins weren't clear. The HER diagnosis took ages so I had the surgery first. I'm dreading the chemo - how long does it start after the surgery? Getting Taxol for 12 weeks and Herceptin for 12 months and radiotherapy for 7 weeks. Do you get steroids and antibiotics along with the taxol or what drugs do you get? What should I expect - any tips??
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kae - I had surgery first, then TCH. Perjeta had not yet been approved when I was treated. My surgeon ordered BRCA testing and a pre-surgical MRI. After surgery my MO ordered CBC, CMP, CA-27/29 and CEA - which are both tumor markers, and Vitamin D testing. I had a CBC weekly between chemo infusions to monitor my blood counts. My MO continues with that same battery of tests at each appointment and I am 6 years out. I had an echocardiogram (some have MUGA, but I didn't), prior to the start of chemo, then quarterly through the year of Herceptin, and one about 6 months later. I had a pre-chemo PET, a post-chemo PET, one after Herceptin, and one about six months ago. That last PET showed some abnormalities, but I could not have an MRI due to having a tissue expander in place, but had one post-exchange. To ward off neuropathy I took 30g of L-Glutamine and a capsule of B6. I iced fingernails and toenails to keep from losing my nails, but not for anti-neuropathy.
suburbs - welcome!
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day 3 post chemo is definitely THE worst in my humble opinion. I had chemo on Fridays and Mondays sucked...
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I took B6 for neuropathy. Following chemo I was left with mild tingling in my toes, so I continue to take it. I went off it for a few months, but the tingling got worse.
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B6 for me. Not mentioned much but great for getting those blood counts back up - Papaya Leaf tea or extract. Always helped my white cells. Also flax seed oil. So many tips yet you need to find what works for you. I knew I needed to take Zolfran day 2 in the morning before I needed it or I would be in trouble. I also kept Imodium in the house since I experienced extreme diarrhea for a week after infusion. It was so extreme my onc gave me a prescription also. Remember if you experience the big D fluids are an option as well as a good idea. Get them scheduled before you feel too bad. This is kind of gross & embarrassing but I'll pass it on in case it helps someone. The pharmacy sells trial packs of Depends. I had D so badly for a few days that it was iffy whether I would make it to the bathroom and didn't a few times. It just happens to some. I would be so afraid of having an accident. The Depends gave me confidence that an accident wouldn't happen so I went out much sooner than I would have without. Getting out helps with depression so it was a win win
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thanks ladies. special K, that is a very detailed work-up pre and post chemo,Tresjoli, it seems that everybody feels pretty bad on day 3 of chemo, Debiann, i am taking B6 now so its good to know it worked for you.Juli24, yes i read somewhere that taking Zofran in advance helped a lot, too..
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This thread is full of really useful information. I will try the icing and B6 as I already had cytoxan for severe lupus in my 20's and I'm at risk of neuropathy.
Regarding the 3 positives - I understand the ER+ and HER2+ but what does having PR+ mean?
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kae, you asked about lupron and zofran...
I had Lupron injections beginning two weeks pre-chemo to shut down my ovaries, protecting them from chemo. I would like to not be in menopause at the end of all this hell, and with the lupron injections i stand a better chance. I would like to hold on to a wisp of hope of having another child. And i think of myself as a juicy, sparky, pre-menopausal babe and am not yet ready to surrender that.
Lupron and chemo definitely slammed me into chemopause. Hot flashes and parchment-like southern dryness. Worth it for the hope i am looking for. A month after chemo those symptoms faded away, and i felt back to normal (except without periods) for the two months while still on lupron. It can take weeks or months for the effects of the lupron to wear off, apparently, and it was officially active in my system until the end of January. So i am eagerly awaiting clues. Will go for bloodwork in a month.
An upside to NOT using lupron, though, is that there is some evidence that women who are tipped into menopause by chemo do better than women who are not. A permanent reduction in estrogen levels.
As for Zofran, i think it is fair to say you will know if you need it. I had four different anti-nausea medications that i mixed and matched without relief rounds one and two. Round two i had 30 hours of nausea and vomitting, 21 rounds of vomitting, popped a blood vessel in my eye round 19, landed in hospital for iv fluids and tests. Continued vomitting at the hospital until they gave me zofran in my iv. All the difference in the world. After chemo rounds three and four, the wild dogs of upchuck chased me but never caught me. When i no longer felt them on my tail, i eased off on the zofran. Zofran and senekot go very well together. Zofran constipation is no joke. If you can sleep well and have good digestive health, chemo is much much easier to endure.
In retrospect i wish i'd had the zofran rX on hand to fill if/when i needed it.
Best of luck
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suburbs,
My second go round with BC. I was dxone day after you!Now officially triple positive after final path came in.
ER + 98.80%
PR + 77.77%
Her 2 + grade 3
This is after bmx, and hyster/oopher done in 2008
We will be going through this almost on the same track. I start chemo TCH Feb 20, due to having to go back in tomorrow to get some chest wall muscle, I did not get clear margins. Port placement this Thursday
Fun times
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Hello everyone!
Glad to see so many wonderful ladies here. This is my first post! I just completed my 1 year of herceptin and currently taking Anastrozole daily. Sometimes I get tense thinking about recurrence.
Best regards to everyone!
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Hi Danix. We'll be taking the same journey together. Hoping your port placement team treats you very well and your recovery is super quick. I'll be a couple of days ahead of you. Fighting
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Hey ladies. I've done 5/6 chemo's. Finished my 3 FEC, which I got through pretty easily, but the Docetaxel is kicking my butt each round. One more. Can't wait to have it over with.
One question for you...I see a lot of you have/had Herceptin or Herceptin and Perjecta before surgery along with chemo. My hormone receptors weren't discovered until after my surgery so I didn't know I was triple positive then. No Neoadjuvent (sp) for me. Also no perjecta, just herceptin for the next year. That is my only regret, or question, so far through this. Would I have had a higher chance of success, or lower percentages, if I had known beforehand? Would it have changed my choices? I don't know, maybe. I at least may have had a M instead of a lump. I wish I had known that they should have had it from my biopsy so I could have looked at the full picture.
Are my chances of reoccurrance higher because I didn't have neoadjuvent chemo/herceptin/Perjecta?
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tunegrrl, i wondered about the Lupron pre chemo and i will ask my MO about it. i no longer wish to have kids as my twin 8 y/o are more than enough for me!!!lol.plus 1 boy and 1 girl, so i am all good in that department, so maybe an ooprorectomy is something to think about later on.i am estrogen positive so i thought also that Lupron pre chemo will or with chemo will zap my cancer better..plus it will help with my endometriosis which give me pelvic pain...danix, hopefully i will start my neoadjuvant chemo with you at the end of Feb...was diagnosed same day as you!fun times indeed.. Leslie, all i know about Perjeta is that it was approved after herceptin was approved so some people did not get it neoadjuvantly , and that insurance only approves it neoadjuvantly for her 2 (+) people... i dont know if it makes a difference or if there are any studies that show if it helps more if you got it neoadjuvantly versus not getting it. i am sure some ladies will chime in with regards to this .
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Leslie, you are getting Herceptin now so all's well that ends well. Perjeta is not available for us in Ontario yet, except perhaps in advanced BC oncompassionate grounds. Your tumour was tiny and FEC-D is like going at it with all guns blazing. Quite a bit more forceful a chemo regimen than TC which is more common for small tumours like ours. Stage 1A is awesome, i can't imagine how neoadjuvant chemo would have helped you. You didn't need it to shrink the tumour to make lumpectomy an option, and you caught it so early, you have every reason to expect an excellent prognosis. You may wish to check out the Predict breast cancer calculator for reassurance. http://www.predict.nhs.uk/predict_v2.0.html
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kae, my impression is that the question of whether it is worth suppressing or removing ovaries hinges on whether the nodes are involved. Without nodal involvement my people didn't think it would be worth it for me. I was keen to stay on lupron if there would be a measurable survival advantage. As it is, the Predict BC calculator tells me hormone therapy only gives me an additional 1.5% survival advantage at ten years. That would be for taking tamoxifen. Ovarian suppression would augment that somewhat, but not by much. The SOFT trial has details.
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Leslie,
No one knows for sure how Perjeta impacts recurrence. It's too new. There are studies, however, which show that women who do Perjeta as part of neoadjuvant treatment are more likely to achieve PCR -- pathological complete response (no remaining active cancer after chemo). The unproven assumption (adopted by the U.S.), then, is that Perjeta should produce better outcomes because women who achieve PCR are likely to achieve better outcomes. Because there's no direct evidence of Perjeta's impact on recurrence and survival, many Canadian provinces do not provide it as part of their standard treatments.
Also, please note that many of our longer-term surviving sisters did not get Perjeta, and many of them are doing fine.
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Hi Elizabeth7,
Reference your question about chemo ...
My chemo was Herceptin, Carboplatin, Taxotere. Six rounds every 21 days.
I got anti nausea drug for immediate response and a 3 - 4 day delayed response the day of chemo. I also had an oral dissolving pill to take as well (Ondansetron). I still use those because I will not complete Herceptin until August 2017 and the nausea comes and goes.Mine is like mild morning sickness.I also take a prescription Vitamin B complex and I have had some extremity tingling but not much.
The first 2 - 3 days after chemo, I was still energized from all the steroids.
Round 4 was probably my hardest. Rounds 5 and 6 were OK.
I worked out 6 days a week as soon as I could after my double mastectomies and I still do.
Yes, I had side effects but they were not the end of the world. Sure, I was tired and fatigued but I managed to continue my lifestyle. I think the workouts, especially the walking, really helped.Probably the worse for me was giving up coffee the first couple of days.
There are some real up sides to chemo.I haven't shaved my legs or under my arms in months.There is no hair and I sure hope it does not come back! Because I am not spending so much time in the shower I have not been late for any appointments since I started chemo.
My husband used gel cap therapy on my scalp and I never loss all my hair nor had any bald spots.There is a thread on breastcancer.org if you are interested in gel cap therapy.
Here is a blog I wrote about my chemo experience. http://leaderlines.net/my-chemo-rocks/
Everyone will have a different chemo story.I believe it is the unknown of what will happen that is so frightening.How the woman is portrayed in the Neulasta commercial doesn't give chemo a fair representation of how easy it can be.For me, I dressed everyday of treatment with make up just like I did the day after.
I am banking you will do just great.
Coach Vicky
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