TRIPLE POSITIVE GROUP
Comments
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My onc didn't want me to change anything. She was the one who added the Calcium once she saw I was osteopenic. Also tested my D again to make sure the levels were correct. Here's what I was taking.
• calcium 1200
• Vitamin D 400 IU (included in calcium)
• Vitamin D3 1000 IU
• Vita-Acidophilus 1.5 billion cells
• Biotin 5 mg
• Multivitamin/Multi-mineral CentrumI did add
• Acetyl-L-Carnitine 500 mg
but not with my oncs blessing. That's another story. My NP said no. Not sure if she ever asked my onc and I was haveing nueropathy, tingling in my left hand as well as numb heel. Once I started taking it I never had tingling in my left hand again.0 -
I can see I'm out numbered here with the high does Vitamin C
I will say that just like everybody, I have to live with my decision re: my treatment. I have a father who is very eastern medicine (Chinese heritage) and did not want me to even have surgery. Even taking into consideration my age (33) and the size of the tumor, he prefered I go to Sanoviv or one of the alternative medical facilities located outside of the country. I could not afford this type of treatment nor am I a committed believer in its efficacy. I was not and am not ready to put all my eggs in that basket.With that said, I chose surgery as well as to seek out a board certified naturopathic oncologist to work with my MO. I just met with him today and he went over all the documentation as well as studies that I read (but forgot) prior to deciding to go this route.
High dose vitamin C studies in the past were based on oral administration. Your body cannot absorb the amounts it needs to effectively treat and fight cancer. When administrered orally, vitamin C acts as an antioxident. I think everybody would agree. When administered via IV in high dose, it has a pro-oxident effect and does not act the same way in the body. If you Google high dose IV vitamin C and pro-oxident you will find some information. It also, in my humble opinion, will help with the SE of chemo and it has, for me, so far. I am still fatigued, I have headaches, my taste buds are off but I can function just fine throughout my day. I am on the 2nd of 15 treatments, however... So this may change. Time will tell.
I am more open to naturopathic methods, most likely, because of how I grew up. With a father that heavily bases his health and relies on chinese medicine. So far, it has worked for him. He looks great, is 62, healthy and has revolved his life around this way of thinking. I grew up here in the United States, however. I grew up with the Western world so I am not as committed as he. I have found a place for both worlds in my treatment.
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LeeA - I did not develop lymphedema until half way through chemo when I had a sudden body-wide swelling event. I may have developed it anyway down the line but it was the cause for me - I had instant axillary web and a lot of pain in the arm. It had been almost 6 months since the ALND at that point.
fluff - I am not completely giving up the Spanx either - funny! I am just excited that I don't have to sleep in them anymore. I figure my poor abs are non-existent so I will wear compression when I go back to the gym on Monday.
dizzy - funny - I referred to myself as Goldilocks - muh like your Princess and the Pea thing - for me it has to be "just right", lol!
My only comment on the Vit C thing is that someone from BCO that is local to me did the Thermagram and Vit C thing to treat a small cancer only to have the thing progress rapidly and leave her with a 3C diagnosis, which she treated conventionally. An anecdotal reference to be sure, but scary. It might have happened anyway and this is true with conventional treatment too.
Macho - your choices are yours to make, and you need to do what YOU are comfortable with. Not all of us on this thread have chosen the same treatment, even with similar diagnoses. I hope that nobody here will give you grief for your choices, we respect that these are your treatment decisions and we support your right to make them without judgement. We wish only the best for you.
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special K - i have this cording thing under my arm, is that what you are talking about? is this a precurser to lymphadema???
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Rozem I had cording in my non LE arm but non in the LE arm so go figure. It can be a precursor but not necessarily. You should go to PT and get it gradually stretched out. I did and never got it back.
Macho-Mouse you seemed to have done your research. Like I said my onc never mentioned anything about staying away from citris. I was told I could eat anything.
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thanks lago - how often did you do PT ? I am doing it once a week and yes, she is stretching that area out
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Hmm, avoid citrus while just on herceptin? I don’t eat grapefruit but I do enjoy oranges.
Machomouse, I see your points but I still wouldn’t risk it. I think the amount in a regular multivitamin is fine (or so my medical team said), but I just wouldn’t risk it. I don’t see the upside to it. A lot of us had fairly mild chemo experiences, myself included. I did take a bunch of supplements but not antioxidants. Even if I had a horrible chemo experience, it’s still just 4 months, even if it’s 4 miserable months. You can do alternative stuff up the yin yang when you’re done. That’s certainly my plan. You’re early stage and there’s no reason the conventional route won’t totally kill the beast. The vit C infusions after you’re done with chemo might be really helpful to prevent a recurrence – I have no opinion about that either way. At that point I don’t think there’s any harm to it. Many of us, myself included, did a lot of research and questioning when we were told chemo was in the cards for us. I know that it undermines my body’s ability to heal itself. But I researched it, even met with Dr. Slamon, and at the end of the day, I felt like I had to trust the research.
Personally, I'm a little iffy on naturopaths. I met a woman at a support group who didn't understand much about her diagnosis, but her oncologist was telling her he recommended a BMX and chemo. She said, on the other hand, she had a friend who was a naturopathic doctor who said she coudl find everything she needed to cure her at the health food store. I feel like I'm repeating myself here .... ? Anyway please excuse me if so. I thought htat was really irresponsible. I TOTALLY undersatnd that you're naturopath is NOT saying that, so that is just a general comment.
But I concur with SpecialK – you have to go with what you’re comfortable with, and we all just want the best for you and the other women on this board.
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Hi all...been awhile. Had my lumpectomy and snb today so glad this is over. Not nearly as bad has I thought. I have never had surgery and did not know what to expect. It was fine. I am sore tonight but do not need the pain pills. Have them at the ready if I do. Having the symphony test by Agendia done as a second path test and looking forward to finding out the results of that. I feel cancer free tonight and it feels pretty good!
lago, Hawaii was amazing you are right! Enjoyed every dang second of it, cancer or not! Thank you for the encouragement to go!
Ok wish me luck on pain free sleep tonight. XO0 -
Hmmm...now that you mentioned it, I remember my onc said no grapefruit also during chemo, and then it was on some sheet I received for tamoxifen. Not a big deal, as my husband is on a cholesterol medication and you can't have grapefruit with that either. There wasnt any restriction on oranges.
Macho...I agree with the others in that each person has to make their own choices. I read several books before starting chemo that recommended if vitamin c as it made the chemo more effective. Bottom line is they don't know if it does or doesn't. I just decided that since they didnt know if it helped, I would go three months without it. I actually was just considering IV vitamin c again. I called the natural office I went to once and they told me I had to get my ONC's ok. He says I don't need it and it isn't necessary, so I haven't pursued it.
Gratitude ...I wanted a sexy, shaggy Farrah Fawcett style wig in the WORST way. Took my daughter with me once, and my husband another time. Tried them on. Poor things, they knew I was already stressed beyond my tolerance level anyway, so when I looked at them to see what they thought (and I looked really stupid), they were trying their best to nicely say they just didn't think it looked like me. Then my daughter lost it and was howling she was laughing so hard. She ended by saying she was not going out in public with me looking like that. I told her I could pick up a mini skirt and tank top and take my shaggy hair to a street corner.
Had a big shock tonight. Was driving home after a movie (surprised husband and took him to the Die Hard movie-dont go, not that good), in the dark. Suddenly I see this large black movement. I swerved the car and missed barely, only to realize it was a cow sauntering in the middle of a busy city street. A big, solid black cow. After my near heart attack, I went to call 911, but someone had pulled up and was getting out to deal with the situation.0 -
For those who were talking about comedo necrosis, this is from this (breastcancer.org) website:ComedoLarger Version High-grade DCIS is sometimes described as "comedo" or "comedo necrosis." Comedo refers to areas of dead (necrotic) cancer cells, which build up inside the tumor. When cancer cells grow quickly, some cells don’t get enough nourishment. These starved cells can die off, leaving areas of necrosis.0
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When the radiologist and breast surgeon showed me MRI images of my tumor there was necrosis inside.
I had already seen it in the images I had on the DVD from the hospital that performed the biopsy. I fooled around with the color on one of the shots and could clearly see it but didn't know exactly what it was at the time.
This is a screenshot from the ultrasound. I had eight weeks between my mammogram/ultrasound and biopsy to fret and stew over these images (on DVD) that I probably shouldn't have even been looking at. The necrosis looked very similar on the MRI images but those were in black/gray shades. This ultrasound was originally in black/gray shades as well but when I adjusted the color I saw the black area and had a really sick feeling that this wasn't something that was benign. And it wasn't.
Note: I hope this doesn't creep anyone out... I can remove the photo if it does. The tilted oval part is the actual tumor.
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Thanks for the kind words about my blog, everyone! Writing it is very therapeutic.
I had some necrosis, I don't remember how much, but my nuclear grade was only 1 and my cells are well-to-moderately differentiated, making me a grade 2 overall. A bit strange, since I'm also HER2+. Well, whatever, I'm getting the chemo either way. T-minus 13 hours until my pre-chemo haircut!
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Rozem Right after my BMX when I had cording and no LE I was going 2x a week but I also didn't have my range back yet.
Lsl327 I had the BMX with snb one side and 10 nodes on the other. Never took a pain pill or used the pain pump. It was my first surgery too. Lot easier than I though… not that I would want to do it again. Hope you're sleeping better than I am tonight.
Fluff only in the Midwest would you find a black cow in the middle of a city street. I prefer the ones made with ice cream.
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Jennt28,
LOL! He was creating his fantasy woman. Now you're ruining it all.
I do wonder what these men think about looking @ boobs and other even more private stuff all day long.0 -
ashla a long time ago I was a video game designer. Some how my group got the licence for Playboy and even though I was hired to design games for women & children I ended up at playboy scanning all the photos then correcting the images. Finally I they gave the job to a guy on my team. Even he said after a week it all seems the same. Just working on pixels. You don't even look anymore just want to get the job done.
So probably we are just flesh/canvas/pixels to our PS.
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Hello ladies! Once again I need to ask for your help. Just at my last appt I decided to ask about my levels of estrogen and progestrone from my pathology report in the biopsy wayyy back in August (I know! Takes me awhile!) and my MO said it looked like I was only intermediately estrogen positive - moderate but not low - but very positive on progesterone. Very high. What does this mean? Is there already another thread for just that?
Edited to add: I mean is there anything that talks about being more progesterone positive than estrogen...are there things that work more or less effectively for progesterone than estrogen? Will Tamoxifen work any better or worse (that is what MO wants me to start on soon).
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Forever,
I asked my Onc about why I can never find anything about PR+. He said, they have no idea what it means for cancer when a woman has high PR+, so for the time being, they just ignore it.
Macho-Mouse,
Please don't feel ganged up on. The ladies on this thread will absolutely not hold back, will tell you the truth and give their opinions. We need that kind of honesty.
However, if this is the route you choose.... Then I support you, and am here if you need anything. And since you've chosen the Vit C IV with chemo, you can educate us as to the SEs. Information is what this entire site is about, information and support.
So, please do share if you think its helping (like you did)..and if you ever think it's hurting or just have general information. The women who come after you that want to try it will want those details.
I'd like to know about it frankly. Where do you go to get it? Do they use your port? How long is the infusion? How much does it cost? Is there a medical reason for having Vitamin C in an IV bag? I mean outside of cancer?
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OK, so I have another bra issue
I was running today and my jogging bra was rubbing against my port to the point of rubbing it raw. I guess I will try covering the port with some sort of bandage when I run unless any of you have any better ideas? Pushing the strap off my shoulder isn't an option as this is my natural side (not the ziplock bag!) and I definitely need the support when I run.In other news, there was a pretty significant covering of hair on the shower floor today. So two weeks to the day of my first infusion, it's starting to come out.
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Dizzymom,
Have you tried the genie bra...and my hair was falling out to at about the 2nd week..I decided to go to my hairdresser and have her shave it down to a 6 and just wore my scarfs afterwards..I know it devastating at least to me it ws because I went bald twice but it will grow back and I bought a wig that looked just like my haircut I had so some really didn't now...good luck0 -
I just checked out that on their website and it doesn't look like they have adjustable straps which are very necessary for me right now. On the left, I have a rock hard, very high TE and on the right, I have a gravity stricken natural DD that needs a crane's touch to get anywhere near parallel with leftie
But thanks for the suggestion!0 -
Macho-Mouse please note that Tonlee and I had a few differences of opinion regarding treatment a few years ago. We still enjoy playing in the same sandbox.
Dizzymom I used to put one of those round make up remover flat cotton pads over my port when I wore the bras that had rubbing straps. I wasn't a runner but I am a power walker. It helped.
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I have to quit going away for a few days because there is way too much to catch up on when I return.
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Dizzy, the nurse at the port surgeon's office recommended one of those square 4" x 4" bandages. I never had to use any of them while it was healing but I had a box on hand just in case.
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Checking in before I read all of the posts on this fast-moving board. I went for my 11th taxol/herceptin treatment today and all went well. Blood tests and MUGA scan were in the normal range except for my hemoglobin/hematocrit. I'm still pretty anemic.
But the weirdest thing of all--my nurse practioner asked me if I felt like my hair was growing back. I had a buff on so she couldn't see my scalp and I said I didn't think so...she said sometimes on taxol the follicles just say "screw it" and start producing hair. I'm sitting here with steroid-induced insomnia and I'm rubbing my head and YES! My hair is growing back!!!
I'm so pumped!
Ok, let me go back and read the board and contribute to the discussion instead of making it all about me
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Dizzy, all my hair fell out (or I pulled it out--it was super weird!) on Thanksgiving day of last year. I had tugged on a clump of hair the night before because I knew Thanksgiving would be day 14 after my first chemo. It seemed firmly stuck to my head, so I went to bed.
Next morning I did my ablutions, walked my dog and fed my cat. Went into the bathroom to see if my hair was falling out yet, tugged and the entire clump came off in my hand. I just spent the next 30 minutes pulling all of the hair out of my head.
I had planned a head shaving party with my wonderful hair dresser and a bunch of my buddies, but they were all out of town for the holiday. Turns out I didn't need them. I was officially bald by about 10 a.m. Weird, but an experience I'll never forget. I wasn't even bald as an infant!!
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Oh, and on the topic of grapefruit--unlike other citrus fruits, grapefruit has components that have to be metabolized by a very common pathway in the liver (cytochrome P450 system). The CYP enzymes that metabolize grapefruit are also some of the main ones that metabolize certain drugs. So if you take a statin and then drink some grapefruit juice, your statin won't get metabolized to the active form.
Grapefruit can cause the drug you take that needs a metabolic transformation to not get absorbed, so you can end up with circulating drug that isn't usable.
It kind of sucks because I just love grapefruits!!
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Hi there,
I am new to this site and just wanted to say hello and thank you for allowing me to join so I can read and learn and talk ...
I have not had the opportunity to speak with other triple positive women before and it is great to hear all the positive feedback.
I hope I did this right ???
Thanks again
Tina0 -
Welcome Tina---sorry u'r here for the reason u'r here--but these ladies are amazing and u not only will learn u'll have comfort too. So keep on reading and posting and u won't be sorry.
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Hi Tina. Welcome to the TP gang
. We are honored to get you first post. Just a quick question. Did you just do Taxotere & Heceptin followed by Tamox? I think I've seen a few others that just did Taxotere and not another chemo. So many things have changed since 2.5 years ago.0 -
Oh PBrain, I don't think I could do that! When it gets bad enough, my husband will shave it off. It's very weird though to run my hand though my hair and come out with a furry paw.
Thanks for the port coverage suggestions. I will try them. I hope this big scab is gone by Friday when I go for my 2nd infusion.
Happy weekend everybody!
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