TRIPLE POSITIVE GROUP
Comments
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Mommyof3, ugh. I'm sorry to hear about your diagnosis -- it sounds very frightening. Everyone else is right -- we have a lot more treatment options than do triple negative women. From my very brief Dr. Google search on comedal necrosis, it looks like that's a sign of cancer, but not necessarily mets. Like Lago, I also had a fairly big tumor -- 4.8 cm -- and was totally node negative. I realize that it looks like yorus is larger (thought it might not all be cancerous) -- however, you could still be node negative or have a local invasion, i.e. to your lymph nodes. Which is not the same as mets. Well sending good thoughts your way -- please keep us posted.
runner, I concur that you should be fine re the wedding, but you will be at the nadir of you cycle, so susceptible to illness. Since your immune system could be shot, you need to be careful -- you could end up in the hospital with an infection. I never had to take that neulesta shot -- I think it might have something to do with the fact htat I exercised all the way through. So that would help--since your screen name has the word "runner" in it, that might help you. All that being said, I think you just have to be a lot more cautious than usual -- act like you're a neurotic germophobe and you should be ok. I'd skip the alcohol though, personally.
Macho, my two cents is that i would skip the vitamin C iv. MO said he didn't want me taking more than 1000 mg of Vit C a day, or the rda max, during chemo. RO said same thing during rads. It may or may not interfere with the chemo -- but if you're going to put your body through the chemo, why risk undermining its efficacy? You can always resume the Vit C infusions when you're done with chemo. Vit C is antioxidant, and chemo and rads work in part by being prooxidant, so the idea is that you'd undercut it.
In terms of herceptin SEs, MY NOSE IS RUNNING CONSTANTLY AND IT IS DRIVING ME CRAZY!!! Ok I know if that is the worst thing I have to deal with, it's no big deal. I am puzzled as to why now, 2 weeks into a 3 week cycle (next dose is next friday). I also find it odd and kind of amusing that my nose is literally bright red right now.
And still with the weird smelling pee.
Dizzy, I'm glad to read you're doing so well with your chemo so far.
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runner, also, I assume you know about the cold caps by now -- you can keep your hair! See the cold caps thread for more info. I'm sorry you have to deal with this at such a young age. Well, ever, but you know what i mean.
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I had them run the Herceptin for an hour again today. I used the bathroom before leaving and I did notice a distinctive smell but that might have been all the chemo meds in concert with one another.
cypher, I wonder if you're in one of those cycles of hair loss - not head hair loss but cilia/inner nose hair loss? I've noticed some posts on the hair thread regarding people losing hair, eyelashes, etc. post-chemo. I know you're pretty far post-chemo but thought I would bring it up. Plus, I'm on a steroid high - woo hoo - so I'm more talkative ("typative") than normal - and that's quite a bit even when I'm not on steroids. *sigh* The crash won't be pretty (I'm guessing). BUT - back to your nose: could you have caught a good old-fashioned cold? Someone across the chemo center seemed to have a cold today. She was sitting with a box of tissues on her lap.
re: vitamin C - macho, my onc said no megadoses of Vitamin C. It was on the print out provided by the Disney Center as well; however, I did have a friend who encouraged me to try to find a place who would do vitamin C infusions. I think TonLee (?) may have - at one time - mentioned someone she knew who did vitamin C infusions. Perhaps she'll see this and chime in or perhaps my memory is not serving me correctly.
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LeeA, it's not a cold. I feel totally fine. It's definitely from one of the drugs. I wish it were from pertuzamab (still looking for some sign that I'm not in the placebo group), but I think it's from the herceptin. If you google it it's not an unusual complaint. Not the end of hte world either. So will this be tx3 for you? If so, woo hoo! Almost halfway done!
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Yes, today was treatment three so yes, halfway done but yet again, there are the crash days to come. I've been trying to follow TonLee's example and have been eating us out of house and home with Fage Greek yogurt and trying to get up to 100 grams of protein a day although I don't keep a close count.
I've tried to walk 30 minutes a day but missed four days during the last post-chemo cycle and last week didn't walk two days. All in all, since January 1 I've walked every day but six - 38 out of 44. Who knows what this cycle will bring... that's the mystery of it all - never knowing what our own bodies have in store for us.
The oncologist says I don't have to come in again until my next treatment - unless I'm feeling crappy (his words - note, I do have to go in for a Neulasta shot tomorrow). The plastic surgeon injected more fluid in the ZipLocs (as I think of them) last Friday and I have some perky-ish blobs (ETA: maybe I'll call them bloobs!). Hair, well, not so much. I look a bit like an emu that's gotten its claw stuck in an electrical outlet (I never shaved my head completely).
I hope you're in the "P" arm of that trial!
ETA: Will you ever find out?
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IT sounds like you're doing pretty well -- I do think that the exercise helped me have a fairly mild chemo experience. I know tx3 isn't halfway -- I counted half way about a week after tx3, as the first week is the hardest, the third week I felt pretty normal. My food bills were pretty breathtaking while I was doing chemo, so I can relate.
Thanks! I hope so too.
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Had my MO visit today before Herceptin. For once, I actually took good notes and came in armed with a bunch of questions. He was quite patient with me and even seemed excited to talk. I asked about our ability to metabolize Tamoxifen and he agreed that there is a small percentage of women who do not. He said the blood test is simple and immediately agreed to order it for me. The issue, he said, is what to do with the results which is not quite so black and white. He said there are degrees of which one metabolizes the drug. My line of thinking is...why would I want to be on a drug for five years if my body doesn't metabolize it? We agreed if I am low, we will begin Lupron shots or consider an ooph.
Cypher, my nose runs, too. My MO was surprised when I told him this was a common side effect. That scared me.
Mommyof3, sorry you are here with us, but this is a great place to be. We will hold your hand every step of the way.
Foreverchanged, I sometimes think the night sweats are our bodies flushing our systems of whatever toxins it wants to dump. Helps my mindset.
Runner, have you considered asking your MO to start chemo after the wedding? Many of us have delays to surgery or other complications. I know I wouldn't have wanted to, but I had a positive node and am at a later stage than you are.
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Runner, I had weekly taxol for twelve weeks. I flew to California for my daughters college graduation about 8 weeks in. I flew out the day I had taxol/herceptin, as I knew I would be loaded with steroids and wide awake. Day two, I slept a bunch at the pool and caught up with the time change. After that, I was fine. I took all kinds of meds along with me just in case though.
Lee...your emu comment made me laugh. I didn't shave my hair either. I really managed to get through most of chemo with enough for a baseball cap. Toward the end, I thought I looked like Beetlejuice.
Also on Tim Hortons...my daughter made me eat a muffin from there that she always raved about. Had all kinds of goodness on the inside, but can't remember what now.
Forever...my bad flashes happen during the day. Today was really bad. It helps at night that I keep the window open a little, and have a long, narrow, oscillating fan with a fan that blows gently across. I like it better than my overhead fan. So, if I flash, I throw off the covers and cool down pretty quickly.
A most sincere "sorry you are here" to the new folks. My thoughts in the early stages include...take a tape recorder to your appointments and record the conversation. Helps HUGELY. If you don't love the oncologist, interview another. That is one small thing you have control of. Finally, in hindsight....I sent myself into panic disorder trying to research round the clock, stress over everything I was facing, imagining the worst. It was not nearly as bad as I was convinced it would be. There are a lot of things now that make it much more doable with, hopefully, minimal side effects. This has nothing to do with being brave or courageous.....I had let my mind run wild with all the "worst case scenarios" that I neglected to loom at the "best case." I hope you all end up closer to the best case end of things.0 -
Like vballmom I don't want to be taking Tamoxifen for 5-10 years if it's not working and so I had the CYP2D6 test the other week. Result has just come back to show I am an Intermediate metaboliser. No idea what to do with that info really... It would have been so straight forward if I was a good metaboliser or poor metaboliser! Anyone else been faced with this?
Also, my MO was rushed (as usual) this morning and she gave me my hormone level results and just said they were at levels to stay on Tamoxifen, but now looking at them I think they are showing I am menopausal! Anyone an expert on these and can confirm that an Estradiol level of 22 pmol/L and a FSH level of 224 mIu/L mean menopausal?
I have my last Herceptin tomorrow afternoon and my port comes out next Wednesday! It's becoming really obvious that my MO and I are a mismatch and I'm thinking it's time to move on... I'm involved in a couple of trials so moving to another MO could be a problem if I want to stay on them :-/
Welcome to the new women here. I am so sorry you are having to join us! But, this is a great place for support and knowledge :-)
PS: I have a date of May 7th for surgery to get my "stripper boobs" (cup size DD/E after recon when I wanted B/C like I used to have) reduced. Can't wait to get back to a smaller chest.
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Jenn, congratulations on being so close to the end with Herceptin and port removal.
I had to chuckle at stripper boobs. I just had fills on Friday and I'm starting to have blobs that resemble breasts. I'm sure I'm not the only one who has coined the term "bloobs."
Good luck with the surgery and the winding down on Herceptin (plus port removal).
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Fluffqueen, Beetlejuice has come to my mind as well but I don't have that much length. How long was your hair at the baseball hat stage? Mine is only about an inch long all over but I don't have full coverage. I haphazardly buzzed off some of it about three weeks ago (enough to reduce the scalp pain).
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Meanwhile, hair in "other regions" remains curiously and tenaciously intact. This chemo thing sure is an interesting process. I've also noticed that my cuticles aren't as fast-growing - something I really like (I'm trying to find at least a few silver linings in the chemo process).
My go-to headwear has been a cheap 99 Cent store ski cap (no pom pom). In true OCD fashion I returned to the scene of the find and now have about twelve ski caps in various colors. I don't like to go commando at home so the ski caps work well for around the house - plus, going out to eat in "that damn wig" is just so uncomfortable. A scratchy mop that crawls up with every bite does not a fun excursion make. The other day I switched out while my husband was driving and threw the wig in an enormous ZipLoc bag. Now I know how women must have felt back in the days when they couldn't wait to get home to strip out of those torture-like device girdles.
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Thanks for all the advice! My oncologist gave me the go-ahead to schedule the wedding trip. She said we could easily plan my treatment around it. Personally, I want to get this chemo started ASAP because the sooner I start, the sooner I'm finished. I'm hoping that starting on 2/26, getting Neulasta and taking good care of myself will have me feeling good and not too immunocompromised by 3/9.
I've already had a bit of a delay as I decided to freeze my eggs to preserve my fertility, too. My MO said she wasn't at all concerned about the hormone stimulation even though my tumor was ER+. She said four weeks of elevated hormones is nothing, but supported the fertility doc's recommendation of putting me on Tamoxifen for the duration of the ovarian stimulation, just in case. So I've been on tons of drugs for a few days and feel pretty bloated and icky, ugh. I just want to have the whole thing behind me.
As for my hair, too late! It's getting chopped off on Friday!
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Have a great time when you go, runner.
It sounds like you've got an overall plan on all fronts!
You might want to do a search for some of TonLee's posts (as well as those from others) regarding protein intake while on chemotherapy. I had no idea that increased protein was such an important part of the body's healing process.
Given your age - the Neulasta should do wonders for you. From what I've observed from comments in the chemo threads, younger women often have higher levels of WBC (anyone, please feel free to jump in and correct me if I'm off-base on this!).
My oncologist observed my white blood cell counts for the first treatment cycle and then determined that I would need the shot for my second treatment. I'm 54, i.e. old enough to be your mother so my chemo experience is probably completely different than someone of your age. In fact, it seems everyone has a unique experience on chemotherapy, regardless of age.
Several people suggested using Claritin a few days prior and a few days after the Neulasta shot to help with the long bone pain that some people experience following the Neulasta shot. I followed that protocol and didn't have any bone pain. You can do a search of the word Claritin in the board's search engine and see what comes up (and see what you think). Of course, as is the case with anything - be sure to check with your medical oncologist.
Also, I experienced some heartburn/digestive tract issues and after seeing some people mention Prilosec I decided to try it as well. I picked up the generic brand at CVS and then Costco and I think it helped considerably with the second round. My MO seems to be sold on Tums so I bought some of those as well - plus, he gave the green light for one of my old standards - Pepto Bismol (keeping in mind that Pepto Bismol can be constipating which can become a real problem for some people during chemotherapy). I have read that Miralax is a good stool softener (see Jubby's posts on the January 2013 chemo thread) because it's non-spasmodic. TonLee (this thread) has mentioned having success with magnesium oxide supplementation. I haven't tried it but I may end up getting some as she mentioned it helping with bloating.
Sorry to go on and on! Steroids.
Soon, you will know what that means...
If you find yourself cleaning closets in the middle of the night and typing like a monkey on crack - well, you can blame it on the steroids like I am tonight!
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runner, you seem so have such a great attitude about this whole thing -- you sound so upbeat! I still can't get over the 25 yo part. I might even check out your blog.
Ok, off to bed!
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runner,
Based on what cypher posted (re: your blog) I just looked at your signature line and am reading one of your entries. YOU ARE AN EXCELLENT WRITER. Your timing, phrasing, etc. is impeccable. I plan on bookmarking it for future reading (I have a bookmark section of breast cancer blogs).
Like cypher, I am boggled by your age at diagnosis but after reading one of your entries I can see why you mention things happening for a reason. Seriously, you could be a spokesperson for why this extended program for college students (and a few years beyond) is so very important!
Every time I think I've been inspired to the point of saturation someone like you comes along to push the limits further.
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runner: just checked out your blog as well and I echo LeeA here but you are a great writer! Thanks for giving me something to read while on my steroids sleepless nights!!
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LeeA - I laughed at your reference to girdle-like torture devices - I have been wearing compression for the fat-grafting (can finally stop tomorrow after two months!) and that is exactly how I feel - 24 hours a day of Spanx has gotten old!
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I'm so afraid that my wig experience is going to be the same as yours, LeeA. My husband calls me the "Princess in the Pea" because everything (tags, unnatural fabrics) drive me crazy. I picked up the wig yesterday, but still have all my (very short) hair so I haven't experienced what it's going to feel like against a bald scalp. I know I would feel too self conscious in scarves. I bought a few military style caps and my friend is knitting some cotton ski caps for me so that might be my "look" too! Although, I'm going to have to become pretty confident going commando in public because my four year old pulls hats off anytime I wear them.
Happy Valentines everybody!
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And Runner, Ditto the compliments on your blog! At nearly twice your age, I ran my first half marathon a month before my surgery. Yesterday, I ran two miles at an 11 minute pace and was so happy to be running again any distance, any speed. I'll be bookmarking your blog as well.
Take care!
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cypher I had runny nose and serious bloody noses during chemo/herceptin. Both seemed to get better as I moved further out from last chemo. I think it was because my nose hairs did grow back and my blood wasn't as thin after chemo. Both are not uncommon with Herceptin. My onc knows about this but she did the initial trials with Dr Salmon and continues to research HER2+ so I would expect her to know.
DiZZyMom get a wig liner. I am very sensitive to anything itchy. I've been cutting off all the tags on my clothes for years. Never could wear wool. It really helps.
Jennt28 I now you're probably sleeping now but here's what is says on my results:
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FSH
Male: 1-10 mIU/mLMid-cycle 1-10 mIU/mL
Luteal 7-18 mIU/mL
Post-Meno 23-130 mIU/mL
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ESTRADIOL
Male
Prepurbertal: <10 pg/mL
Adult Male: 10-50 pg/mLFemale
Follicular: 30-140 pg/mL
Preovulatory: 140-365 pg/mL
Luteal: 30-175 pg/mL
-------------------------------------Note my last FSH after chemo was 102.6 and my Estradiol was <10.0 (Prepubertal male reading). My onc put me on Anastrozole from the start assuming I would stay in chemopause.
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Runner,
I think nuelasta needs are really based more on time of year (flu season vs summer), exposure (ie, children in the house, lol) than on age or fitness. I worked out every day of chemo, never stopped...ate well, etc..was "young" and still spent 5 days in the hospital for low WB count. Totally sucked.
Vitamin C. Yes I know a woman who was a nurse, diagnosed stage 2 if I remember correctly. She took IV Vit. C during chemo.
She had a PET scan and brain MRI before tx started and it looked like the only cancer was in the breast. She had it removed and started chemo with Vit C IV. (I think her husband said they paid like $1500 a pop!)
Anyway, long story short. She died with BC mets to brain. Did the chemo just not work? Or was it the Vit C?
Well, her Onc was fairly certain the Vit C kept the chemo from working at all. (I got this info through the husband. My BF from high school is married to him now.) In fact, he told her husband that it was like she NEVER took chemo. Meaning, he had patients (same stage) who took surgery but refused chemo. They died within a short period of time 12-24 months after dx even though their scans were clear at time of surgery.
Her Onc believes the chemo didn't work. He also attributes it directly to Vit C infusions.
This was NOT a trial, or study...just an anecdotal story which should hopefully get you to ask your Onc for clinical research to support/deny supplements during tx. Both types of research are out there. Some Oncs say supplements are fine and some don't. Both use literature to back it up.
However, for me personally, I continued with my supplements because they obviously weren't effective enough to STOP the toxic environment that developed cancer....so I didn't figure they'd hurt one way or another.
My Onc was ok with most of the stuff I took...I did drink gallons of green tea because I couldn't stomach the taste of water. He didn't support that.
I did it anyway.
But I have to live with the consequences (if any) of my decision. And at the time, it kept me hydrated. And really helped lessen the SE from chemo. (Which of course could mean it was diminishing the efficacy!) Oh well...
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Jenn...don't be shocked if you still need a dd bra after exchange. I do and I am markedly smaller. I look like a b. I was in the wrong band size though. Check out the bra sizing thread, and then when things have normalized, go,to Nordstroms or a bra store for a proper fitting. The implants are wider so it takes different types of bras sometimes.
Lee, my hair was shoulder length. When I started to shed, I thought about shaving, but then I could still go out without too much difference, just thinner. So I didn't. I wore wigs almost all the time. I had a snug wicking headband I wore under it that kept it snug, so didnt have much problem there. got it off tlc, I think. The fake hair wig was much hotter than my real hair wig. The real hair one, I picked up for $40 at one of those cheap wig joints in a bad area of town, lol. Pulled up in my black Acura SUV. Figured I looked like a pimp. It was on a head form, looked like it had been colored and hacked on a little. I took a chance, went home washed it and it turned out soft and better. Went to my stylist who messed with it and we loved it! I could do whatever I wanted with it since it was real hair. My rest of my hair, eyelashes, and eyebrows all fell out three weeks after my last chemo. But the latter two were already growing in.
SpecialK...you beat me to the comment on girdles. I was going to say the same thing. And Spanx were soft compared to the thing I wore. It really was actual girdle material, and strangely addicting after awhile. I still throw it on with certain dresses. Looks amazing.
Tonlee...I gave up all vitamins and except, b, d, and Acetyl l glutamine. I did drink a smoothie all the time that had various kinds of fruit and either spinach or kale. Mainly because it was one of the things that tasted good. Generally only cold things were appealing. I tried to eat really well with lots of protein. I figured three months without vitamins shouldn't be a big deal if they stay in your system for a bit.
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Oh, and runner....I read your blog. I have been using chemo brain for any cognitive problems. I figured I might be running out of time for using that excuse. glad I can continue it by blaming Tamoxifen.
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Thanks fluff - no exchange though. This is my free TRAM recon I had done in September. PS got enthusiastic with all the flesh available for transfer I guess...
They are a good shape, just so large and heavy. I don't need to be carrying these around!
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SpecialK, congratulations on being set free from Spanx today!
The lymphatic massage therapist advises that I should wear a tight fitting camisole like Spanx. I have two that aren't Spanx but was thinking of get another one. I checked the styles and didn't think the number of stars (review stars) looked that favorable. Did you get one that was shaped like a traditional tank top?
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One thing I'm going to add here that I've thought to mention before but have forgotten -
The lymphatic massage therapist/physical therapist mentioned that there's a study out there regarding Taxotere possibly causing lymphatic/vascular damage. You all might be aware of this but it's the first I had heard of it. She's not the type to spout nonsense so I'm assuming she is quoting from a reliable source but I've yet to Google that study.
I was reminded of it the other day when a woman (I think it was on the TCH thread) mentioned that chemotherapy had contributed to her lymphedema.
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Fluffqueen, $40 for a real hair wig was a bargain! I'm glad you found one that worked out so well for you! Also, interesting information on the bra/cup sizing post-exchange. I took a screenshot of that for the distant future.
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My LE showed up during chemo treatment… officially diagnosed after tx4. I have read that chemo can cause LE. Still wouldn't have stopped me from doing chemo just like it didn't stop me from having surgery.
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DizzyMom,
FWIW, I looooooooooooove my wig. I was fitted at the Wig/Scarf/Hat Salon at the hospital where I am being treated. The gentleman was an angel sent from God, and I took two really close friends who I knew would tell me truthfully whether or not the wig looked okay--or not!! I buzzed my hair after my second chemo treatment and wore my wig, and as treatments continued (I had 6 chemo sessions in total), my hair thinned out a great deal, yet the wig was never uncomfortable. Most people who know me think it is still my hair, and I have received lots of compliments on it. One lady asked me for my hairdresser's name as she liked the lowlights job done by my hairdresser
.Re: SEs from Herceptin, I have dry skin everywhere-also a SE of chemo-, my nasal passages are very dry, I have a drippy nose which my MO tells me is a very common SE, and I always feel warmer than usual for the first 3 days after I receive Herceptin.
I am with TonLee in recommending very STRONGLY (as was recommended to me by my MO, RO, and the pharmacist with whom I have dealt throughout this experience) that patients receiving chemo not ingest large amounts of antioxidants, esp., as they reduce the effectiveness of chemo drugs and radiation. Different chemo drugs kill cancer cells in different ways. For example, for my first three rounds, I received the FEC combination which oxidizes cancer cells; therefore, to take antioxidants in large quantities would have weakened/nullified the effectiveness of the chemo. Taxotere was given, with Herceptin, for the last three rounds. Taxotere is a plant alkaloid derived from the Pacific Yew tree, and it works by halting cell division, interfering with the translation/transcription processes of either RNA or DNA. If cells can't divide (mitosis), they die. There are three stages for any cell: resting, growing and splitting (dividing or mitosis).
Lago, I was told not to consume grapefruit, pomegranates, starfruit or Seville oranges or any such juices while receiving Taxotere and Herceptin together because SEs would be more severe. My MO has not told me to avoid these products while receiving Herceptin only--but I did not ask him if I should continue the ban. Calling him tomorrow about this query.
Finally, Happy Valentine's day to all of you wonderful ladies. I will be popping my first Tamoxifen tablet tonight. Wish me luck!!
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hmmmm...my oncs ALL said the same thing, no supplements/vitamins during chemo. I figured if i was going through the hell why would i want to weaken/counter-act its effects? My friend (triple positive aswell) was taking vitamins and had to have her chemo delayed twice due to issues (low counts or somehting else cant remember). Her MO told her to STOP the vitamins ASAP as they felt that was a part of the problem. My other friend drank essiac tea during her entire treatment but i was told absolutely not. Geez they made it sound like a blueberry was enough to cause a problem!
i also heard the same thing about grapefruit and tamox - apparently grapefruit interacts with a lot of meds not just tamox, so i just avoid it all together. All citrus fruits? i love mandarins!
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Lago, didn't you say you continued your multi vitamin and biotin during chemo? That's all I'm taking is a multi, I've stopped all of my other supplements, but I thought a good multi-vitamin was ok and my MO said it would be. I have been doing extra C the last couple days because I've got some cold symptoms and that's always my go-to, but I guess I shouldn't? I agree that if I'm going to commit to letting the chemo kill the cancer, I need to stay out of the way with the way I would be supplementing if I wasn't on chemo. I'm on TCH right now plus the neulasta shot.
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