TRIPLE POSITIVE GROUP
Comments
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Thanks for posting about your experiences on shorter vs longer Herceptin infusion time. I will definitely be raising this issue with my MO at my next appointment. She hasn't previously given much weight to my anecdote-based arguments but she does try to be open-minded and flexible if possible.
TonLee: I'm kind of with you on landing on a diet of moderation - I only really liked the juicing because I wasn't eating my vegetables otherwise! I'm doing better lately with eating lots more vegetables (when I was a kid, having vegetables meant frozen corn or peas so maybe that didn't start me down the right path!) as well as lots of protein, and way less wheat- and other grain-based products.
I take melatonin every night as well, since I've read that modern-day lighting really messes with our natural sleep cycles. I don't know that I'll have an uninterrupted night for the foreseeable future though, since Miss Chloe has little regard for "day" and "night" so far... But she has really amped up her smiling this week so I'm not too upset about that.
I am 4 days past taxol #2 (tri-weekly) and feeling pretty good. My hair is definitely confused though - it just all fell out last week and this week my scalp is already stubbly again...!
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Arlene- the Cardo guy is LaMothe, Jacques J. Aint dat a sexy name. And he is REALLY easy to look at...heehee...plus, very easy to talk to. Sits and listens, rather than the quick n and out as with some docs. Boy...even that last sentence sounds risque...heehee. Guess I'm full of it tonite eh?
LeeA - Very close...his name is Baxter and he is a Malshi. His dad is Maltese and his mom is Shitzu(sp). He will be 2 years old on April 20....I rescued him sight unseen mostly cuz of his b-day. I also got his sister from a different litter. She looks more shitzu. Vivid pooch dreams...wow...do you have any pooches?
Baxter is on the right and Bella is on the left. TonLee - OMG....so glad you found all this out. I don't have thyroid issues...but do tend to do the 'moderation' in my diet. Good Luck to you....and we are NOT laughing at you...honest!
Moonflower - LOL...we got it..miffed. My hair too grew in curly. But longer it gets, the more that aspect is fading, but I did like it and really intend to keep my hair short. And I still have some, not quite so filled in, spots on my head too. But I have enuf now to cover those areas.
Lago - never thot I wud be here but I have gained soooo much so finally got hooked up to Myfitnesspal.com. Free. But I was amazed at what I was eating. Bottom line....I don't 'give up' anything...but cut back strongly on several things. Seeing it in print everyday...really has helped me. This and with my walking...am down 8 pounds in 7 weeks.
Marlene - Chloe is just tooo precious!! Good luck to you!!
Well, DH home...time to cook!
Love, prayers, positive thoughts...always!
Sue
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TonLee, do you know if it is just raw spinach and kale that decreases thyroid function? Is better for you if you eat it cooked?
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TonLee, I am glad you found it out and that the results are going away. It's always something. Man can you imagine me if I juiced? Low mag, indeed! LOL. BTW, also leading to low mag are meds like omeprozole, and good old arimedix.plus I'm sure other things. Another reason I dont juice, I'm diabetic. Adding the fruit to make it palatable uses too many grams of carbs. I guess I'd rather eat it, than drink it. That's my story and I'm sticking to it! LOL
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Shore,
IT is most cruciferous vegetables. You can google the list. It's pretty big. There are plenty of Vegan/fruit-and-nut -die hards who say it isn't true...but they don't have a single study to back it up. The China Study doesn't even address it. (I'm almost through the book.)
So, yes, for best vitamin/mineral absorption, it is recommended to cook and consume with some sort of fat. At least everything I've read with science behind it says so....
I'm still eating my mint chocolate chip "ice cream" everyday...that involves 4-6 ounces of raw baby spinach, but I will adjust my meds...I'm not giving it up! lol
Lago,
This wasn't a diet, or anything extreme. I just hoped to add a little nutritional punch to my diet. Turns out, I had a pretty good diet to begin with! lol
Jenn, I can't wait to try that when watermelons come in!! I plan to juice a lot of fresh fruit to serve over summer instead of kool-aid, tea, etc. My sons LOOOOOOVE watermelon.
Ok, I am sorry for taking this so far afield for those of you in tx right now. However, I will say this. If you'd like to juice, check with your Onc first. I say that because most don't want anyone taking supplements, and juicing, food, is powerful medicine. I'm not kidding when I say I had a near death experience with beet juice! lol
It really could have been BAD if I were in chemo.
The problem is, there is a bunch of theories, anecdotal evidence, and people claiming to be healed by diet alone. Maybe it worked for them. I dunno. All I know is it made me sick..really horrifically ill. I think my body knows best
At least for the moment, that's my theory! lol
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Biopsy done...now we wait. I took ativan before and practically slept the day away. I should have results by Friday, but I am sure I will start jumping when ever the phone rings beginning on Monday. I still can't believe I am back in this loop again.
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Sue your fur budies are so cute.
vballmom my fingers are crossed for b9
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SpecialK, thanks for sharing that melatonin link. I recently started taking it and have been sleeping better, but was worried a little about adding yet another supplement to my dialy regime.
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TonLee,
Thanks for sharing your experience regarding giving up meat and dairy for two weeks and with your juicing and smoothie experiences. I am making fruit smoothies and eating lots of raw carrots ( I like them) and prunes, but I tried a veggie drink and just really did not enjoy it much. I know, I could try a zillion recipes, and I am certain I would like some of them, but the reality is that as I move further away from the completion of my chemo (4 months ago) and radiation dates (finished end of Jan., 2013),I, too, am adopting an attitude where I will eat a balanced diet, exercise moderately, stop obsessing ('cause I was surely obsessed
) about trying to control all "variables" and read all BC-related info. I realize I am tense, anxiety-ridden and not enjoying the moments of each day. IMHO, I think this realization comes with the passage of time, for others who maybe do not yet feel this way or who now feel presently how I once felt myself. Cabernet, here I come tonight, honey!!0 -
Sue, they are both adorable! We are currently without a pet and we made a vow to remain that way but during the "dark" days of chemo I'm always looking through Craigslist (just for fun) for a new furry friend. Thanks for posting the other photo!
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Gratitude,
Yes, I think it is healthy to move-on. I kinda wanted the smoothie thing to work...lol. Some days it is hard to get in 7 servings of fruits and vegetables....oh well....I never really believed my cancer was diet related...mostly because my cousin got the same cancer, same place, etc and she is the healthiest woman I've ever met!
Oh well. Enjoy the Cabernet! I'm having dark chocolate chips for snack tonight...oh yeah!!!
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Vball,
Keeping you lifted up! Stay strong sister.
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Good morning to all!
I'm never on the same topic as y'all so please forgive me! Im alittle impatient, I see my breast surgeon on Wednesday to go over the path report. Questions keep running through my mind though, so I've brought them to the high court!....lol!
Question #1....since I had a bilateral mastectomy with clear nodes, do I get out of radiation ?
Question #2 will my chemo be reduced ?
Question #3 should I still ask for pet scan, ct scan and whatever other scans?
I think that's all for now Thank you for being such wonderful women and helping me through this hard time! Btw....these drains hurt like Hell, other than the pain and not much arm range, I think I'm going to make it
Have a wonderful day everyone!
Angie0 -
Barber chic,
Surprised you didn't have any of those scans...I had them when I was diagnosed..yes the drains do hurt but not to scare you they werent pleasant coming out..are you going to be taking herceptin as well..0 -
Barberchic..
Depending on the location of your tumor I believe you will get a pass on rads.
Because of the agressive nature I believe most of us her2 ladies get the full chemo protocol if our bodies are able to handle it. Surgery,chemo, radiation and hormonal therapies are layers of treatments that hopefully will prevent recurrence and / or mets.0 -
Sherry67.....I only had a breast MRI a week before surgery. Which showed 2 more tumors besides the main lump in left breast, 1 small suspicious nodule in right breast. Yes, I've heard they hurt pretty bad coming out too
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I'm not sure, my MO requested a fish test for my her2....because they only did an immunostain test. It showed an overexpression +2. She, my MO wants to know just how positive i am. That makes a difference in taking Herceptin, right?
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Barberchic there are so many things that go into the decisions of rads. Size and location are two of them. Typically though women who get mx or bmx only get rads if their tumors over 5cm. I'm sure if they can't get clear margins or if too close to the chest you might get rads too. In my case I did have a tumor over 5cm. My BS thought I would get rads (he also thought I would have micromets in nodes). But I ended up with clear nodes and a pass on rads… but I was in a gray area. The rads call is the rad onc.
I know women stage I and stage III that are HER2+ that all had the same chemo cocktail I did. I think with HER2+ the chemo with Herceptin is pretty much what it is. If anything, the higher stage might get more. If you are not HER2+ then maybe you might get less but that depends on your family history, age, and a bunch of other stuff. These are all questions for your oncologist.
I got scans before surgery because my BS said there was so much time (6 weeks). He always does breast MRI and that's how he found the LCIS in the other breast… ended up with the BMX instead of MX. I'm not sure if my onc would have ordered them but given the size of my tumor it would have made sense. I did not have a brain scan. Just bone and pelvic area. Before the surgery they usually do a chest x-ray and blood test. I got that too. I also got a MUGA before Herceptin to be sure my heart was healthy enough.
If you tested 2+ on the other test that's unequivical (borderline) and that test isn't as accurate as the FISH. You are considered HER2+ if you are 3+ or if the FISH test gives you a positive rating. www.breastcancer.org/symptoms/diagnosis/her2
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Thank you Lago! I knew I could count on y'all for some knowledge to prepare me for Wednesday! Thank you all for your input!
Angie0 -
Camille congrats on just pain. And no bc
My hair is falling and I bought 2 wigs and a hat
Everyone loves my hat but I feel very self conscious wearing it since I never wore hats before. Tomorrow I have round 2 of tch. I have been eating 2 eggs every morning I since my appetite came back for the protein and iron. I have my pain pills ready this time. And plan to avoid the er this time. I had Herceptin day 8 & day 15 and found I was tired after both. Not like the chemo but still drained. I'm also drinking beef broth for protein. I figure I can't due vegetarian and chemo together and will re think my diet after the chemo is over. I stopped my fruit shakes. They didn't taste right during chemo. Unfortunately I'm eating more carbs these days. But haven't gained weight Will see. Good luck to everyone0 -
Vball - Will say some extra prayers that you get good news!!
LeeA - We lost my rotti in Sept '11 right after I finished TCH. We also vowed not to get another furry baby. But since I lost my mom on same day as my dx and Baxter was born on same day...I thot it was a sign. It's been a blessing, so glad we got him and his sister.
TonLee - good advice about the juicing/supplements. CTCA does encourage supplements but they CAREFULLY prescribe based on dx, tx, and overall health issues.
Barberchic - I too am surprised at only an MRI and no other scans. I agree with Lago about the Herceptin. Can't comment on rads as I have not had surgery. They did tell me that if I did do the bmx, they wud do rads on my chestwall...They kno it spread to ribs/spine because they did a Bone and PET scan b4 I started treatment. Good Luck and stay as positive as you can.
Shasha - I too bought 1 wig, several scarf/hats and bangs. Had the wig thinned at a salon. Wore it one other time. The bang with the scarf looked cute...but only wore it once. The hats I wore the most. This was summer time and being that I was having 'hot flashes' every 30 mins/1hr...I could take the hat off til it passed, but the wig/bang/scarf too much trouble for the off/on again. My self-consciousness took a back seat to my comfort...I even got kinda proud of my baldness. Friends wud bring in ribbons too, like those you'd tape to an infants head. I learned to have a good deal of fun with it. But that's just me. Hoping you find your comfort zone soon!
Happy St Pat's day everyone!!
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"May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand."0 -
barber - I only had MRI prior to surgery, and it did not show the ALH and ADH in the non-cancer breast or the positive nodes. All of that was a surprise on post-op pathology. I did have a pre-chemo "nose to toes" PET scan and another post-chemo, and another post-Herceptin. I also did not have rads after BMX/chemo, but I did have a complete axillary node dissection. I asked the MO and BS twice each if I needed rads - both said definitely no. The Her2+ clinical trial I did from June to Dec. of '12 is now recruiting lower expressing Her2 people if you are interested. They have found that if you are histologically A2- even if you express lower amounts of Her2 you can potentially derive benefit for recurrence prevention from the AE37 vaccine. Of course, you take the chance of enrolling and getting the placebo - but it is sargramostim, which also boosts the immune system. Here is a study about Herceptin for lower expressing Her2 patients also:
http://www.cancer.gov/clinicaltrials/featured/trials/NSABP-B-47
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Vbal, I am praying for you too.
Barberchic, I had a BMX and no RADS. Only a mammo, and ultrasound preop. I have a pacemaker, so no MRI for me. no scans other than a bone density. A couple of MUGAs for heart issues. I had the BMX by my request, although they would have been ok with a lumpectomy. But glad I did it because my postop path was an invasive 1.6 in the breast they would not have looked at. So, good choice for me. But you have to know that my family history was the same story for my mom, and my two maternal aunts. so I wasn't about to take a chance. My Mom will be gone twenty years in May, I had all that time to think about how I would handle it.
You will do what you need to do to make you feel you are in control. That's how you do it, day by day. Much love.0 -
Thanks again to more replies! I guess I'll just have to see what I'm told on Wednesday! I'm also getting a feeling of pagets disease since I had a tumor on each side right under my nipples!......too much thinking, I will definitely inform y'all as soon as I know my pathology report! Much love to everyone and Happy St. pattys day!
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Barberc, just dont Dr Google yourself to much, its not worth the stress.
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Moonflwr912.....y'all are my google!...lol!
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Sue, what a dreadful day that must have been for you and your family. I can see why Baxter's birthdate was so significant. It sounds like he was meant to come into your life! I was googling photos of Malshis after reading your post yesterday! They are so cute. Less Wookie (Star Wars) than a straight Shih Tzu. A really great combination.
barberchic, my oncologist had the FISH test done as well just to make certain I was definitely Her2/neu positive (I was - and just as strong as had been indicated on the original biopsy report). He acted like this was good news, well, good news taken in the context that after all, it's breast cancer. He had mentioned a trial for Herceptin (probably the one SpecialK linked to) in the event the test didn't indicate a strong enough Her2 score and he was very happy it didn't have to be given on a trial basis. Because of the delay in starting chemotherapy he had me start with a loading dose of Herceptin three weeks before starting TCH. He even called me back the day after the loading dose to see how I was doing on what he calls "the wonder drug."
Re: Paget's - my tumor (left breast) was very close to the nipple as well but it wasn't Paget's. In fact, the nipple area complex (I think that's what they call it) was apparently cancer-free.
Shasha, I bought a halo wig to wear under hats. I like it and it was reasonably priced and I feel less "cancer patient-ish" when I wear it under a ski cap (it works under a baseball cap or scarf or any headcovering).
The hair thing is such an added annoyance (? - not really the word I want but can't think of anything better at the moment) to deal with on top of feeling like crap on chemo. I'm starting to get used to it but was pretty horrified by the process of losing it when it started happening. I had an omelet with spinach for breakfast because I recently found out my hemoglogin is at 9.3; however, I was reading up on another thread about chemo related anemia and now I'm not sure if food even has an impact on that type of anemia but hey, I figure it can't hurt.
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vballmom, praying for you!
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Barberchic,
I had a bmx and chemo and due to the size and location of my tumor, I didn't need rads. The only scan (not counting the echo heart scans) I've gotten so far has been a pre surgery MRI. I was told no imaging or diagnostic scans unless I have pain or other symptoms.
The drains are a pain, but they didn't hurt coming out....and I had 8 of them!!!
Good luck!
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