TRIPLE POSITIVE GROUP
Comments
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Thanks for the welcome ladies. I got the pink wig to make my teen daughter laugh, but she didn't think it was funny because she was too afraid I was wearing it out and might embarrass her. Geez, she's still in that monster early teen stage, but she'll grow out of it. But I AM wearing it to give out Halloween treats- I don't care if I do embarrass her. Lol.
SpecialK...great that we are in the same city, though I am way out in the country.
Bren... cutest Batman and Robin ever.
This Thursday I am going to visit my BS. I'm hoping she'll set a date for surgery, but maybe I am just optimistic. I haven't seen her since before starting chemo. If you have any advice for this appointment, I would love to hear it.
Leanne
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Leanne - sent you a PM0 -
Hi Ladies- I have a question about all the different brands of Biotin and the difference in price.. I know I am old school in my thinking- I think the more expensive it is the better it is?? There is wide range in price for what appears to be the same product. Can anyone recommend a specific brand or does it really not make a difference?? . Thanks0 -
Eileen - The Nat'l Institutes of Health indicates that there is only preliminary evidence that Biotin works for hair loss, I take it daily but I have not spent a lot of money on it - I use Nature Made 5000mcg, it runs about $8-9 for 50 tiny softgels.0 -
leanne, when my kids were that age, I figured that I embarrassed them simply by my existence. So it didnt matter what I did so I just did what I wanted!!!0 -
Bren - congratulations on finishing Herceptin! I remember when you started but most of all I remember the day you had your port installed. What a long road this has been for all of us (us as in any of us who have ever been diagnosed with BC). Are you planning on keeping your port? This is my current question for anyone and everyone who is still on Herceptin. I know SpecialK still has hers but it's a small one near the collarbone (oh how I wish I could have gotten one like that!).
Marlene, you and your sweet daughter are both adorable!
Pbrain, thanks re: the photo and yes, we're really enjoying Arizona. The air is so much cleaner and exercise no longer feels like a chore - in fact, I look forward to it. We lived very close to a freeway in California and I can see such a difference in the type of dust that accumulates on the furniture here versus there. In retrospect I have to wonder what it was doing to our lungs and car exhaust can also play a part in breast cancer so there's that. I just took a screenshot of your post about vitamin B6 and B12. Thanks for that info.
Hi Leanne. I'm a Lee Ann. :-)
Re: Biotin - I take 5000 mcg a day. I'm not sure if this is of interest to anyone else but I've started noticing the labels on everything including Biotin. Like so many other supplements, Biotin often contains soy oil. I just had a heck of a time finding a multivitamin that doesn't contain soy oil. Also, the vitamin D3 I had been taking from Costco contained soy oil so I switched that as well.0 -
LeeA, MO said I could get the port out anytime I wanted. So of course I am working on getting it ASAP! Probably before Thanksgiving.0 -
SpecialK, your description of self-bandaging using the wall is hilarious! I've always been proudly able to scratch any spot on my back but ever since radiation, my arm doesn't have the same range it used to and that drives ME crazy! I try stretching it but it feels like the there just isn't enough tissue in there anymore. Here's hoping Robin's super-power this year can be healing and ever-improving flexibility.
LeeA, Arizona sounds nice. Do you go out walking or running? I've had to switch to treadmill running in the evening since it's getting dark so early now. And the time change next weekend isn't going to help! Oh, I'm always wary of soy myself - in the few years before my diagnosis, I had actually started eating alot more soy than ever before in my life as I experimented with a vegan diet. That's over now and soy is not my friend anymore. I'll have the chicken please!
Camille, Maxine is a great costume idea!0 -
Bren, whip off that wig and go out there topless. I took mine off way too early...I snuck into work with a baseball cap on and everyone wanted to see my "hair", all 0.25 inches of it. I never put the wig back on again.
Any idea where I can donate them?
Special, your roadmap is what makes you special ;-) You are cracking me up with your bandage application story!!!! And Marlene, you are looking fantastic and that is the cutest bat girl I've ever seen!
Leanne, welcome. Feel free to ask us anything. I've been through so many twists and turns on this journey and so have the others. Nothing is off limits. We get into long detailed discussions about poop at times and Ashla, one of our members, always says "remember when we used to talk about boys?"
Interesting factoid I learned today. I was at herceptin and I asked my nurse Amy if they had a lot of patients on Perjeta. She said they had a few, but will have more with the recent FDA clearance for early stage breast cancer. I asked what the side effects seemed to be and she said none, it was a lot like herceptin. No hair loss, no pre-meds, very easy for nurse and patient. How cool is that? I'm glad to know it is there if I ever need it again.
And LeeA, I read years ago that the majority of dust in our houses (unless we live in OK during the dust bowl) is from car and truck tires on the interstate...wild.0 -
Oh, and Lee A, I have a giant port in the right side and it is kind of visible. I'm torn about keeping it. At Weight Watchers they tell us to give away our big clothes so we don't easily gain the weight back...but at the same time, I had a collapsed lung (or atelectasis) during the surgical placement of the port, which I hear is very common. So I think ah, just keep it. Plus I don't have a vein in my entire body you can access. They are shy. I could never be a heroin addict.
I'd be interested to hear what others think because I'm only 2 herceptins and a few MUGAs away from being pretty much done.0 -
Eileenohio I have been on Biotin since 2005 when my hair started to recede a bit. (a lot of it grew back after chemo, go figure). I have always used this:
http://www.vitaminshoppe.com/p/biotin-5-mg-120-capsules/vs-1869#.UnBq7hAyCVY
Note that the Vitamin Shoppe had bogo (buy1 get one 1/2 price) in April and September. That's when I stock up. I find most of the Vitamin Shoppe brand does not include: "Yeast, Wheat, Gluten, Sugar, Salt, Soy, Dairy,Citrus, Fish, Nut, Artificial Colors or Flavors Added"
My dermatologist that I saw for my nails was please I was taking 5MG of this.0 -
Pbrain and LeeA, I finished Herceptin on September 17 and had my port removed on October 22. Would have done it sooner, but that was the first date available for my surgeon, and I wanted him to do it. I also had second thoughts about removing it (as in, am I jinxing myself), but my MO was all in favor of getting it out asap and he's always so reassuring. Getting it out was interesting - I sort of wish there had been a mirror on the ceiling so I could have watched. (Although my nurse friends say "absolutely not!") Office procedure, local anesthetic, didn't feel anything except some tugging, and then I did feel the catheter being pulled out - not painful, I just felt it. I saw smoke rising from my chest at one point and asked what was going on - he was cauterizing. Steri-strip is still on - thankfully no allergic reactions for me, unlike so many of you!0 -
Marlene: You and your wee one are ADORABLE!!!!!!!0 -
Just popping in to let you all know that I still read here everyday and send healing thoughts to all who need them.
I'm overwhelmed with life changes so just don't get to participate much - changed job to a different challenging positon (I work in the world of clinical trials too); put the house on the market; bought a new house; studying part-time and working full-time; and my mother in New Zealand (3 hour plane ride away) was diagnosed with dementia recently and I had to go over and sort a whole lot of stuff out in 3 days and am now trying to manage everything including her finances and grocery/food deliveries from a different country.
Enough said. Just know I am reading and thinking of you all :-)
Jenn0 -
SpecialK-- I make my own laundry detergent -- it only has 4 ingredients -- minimal lather. I believe the most common ingredient that helps soap to lather is glycerine, the other things are added oils like coconut oil. You might try Ivory which is a pure bar soap (99.9%) and see if you can handle it.
Good luck on finding something "safe" for your body!0 -
Hi Ladies, what kind of shampoo did you use during chemo and Herceptin treatments? Right now I only use baby porducts. Thank you ladies!!!
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SpecialK & Lago- I have been taking Spring Valley 5000 mcg Biotin for a year. It is helping but yesterday I went to CVS and started reading all the different brands of Biotin, they all seem the same,so I thought I would ask you expert gals if one brand was better than another? The price did vary quite a bit. I wondered if more expensive was better? Thanks for your reply. Hugs Eileen0 -
lago - thanks for the good source for better quality Biotin! The one I have been taking is so tiny I figured there can't be much soy in it, but I will make the switch.
6cats - I am actually allergic to cocamidopropyl betaine, it is a coconut derivative that is a surfactant, which causes lather. Because it is a "natural" ingredient it is also in all the products at places like Whole Foods. I use olive oil soap and shampoo from a company called Neolia. I have also used olive oil shampoo from Kiehl's, but it is pricey. For some reason the laundry soap is a lesser issue - maybe because things are rinsed before they touch my skin? I use the perfume and dye free one. With soap and shampoo it was going directly on my skin. Going along with the adhesive issue I was also allergic to my glasses with plastic frames - had little rashes where they touched my face and behind my ear - it is because the plastic has some of the same source materials as the adhesive and my allergy is to epoxy resin. Paint, glue, some other plastics like PVC. The list goes on... Because of this I am sensitive to sawdust (DD had a horse - couldn't escape the sawdust!) and pine cleaning products too.
pbrain - I still have my port, BS said keep it - I think partly because he placed it and likes to admire his work, lol! MO just said in June I could remove it if I want to. Because it is up near my throat I don't want another scar that shows in all clothing - I have a 2" skin cancer removal scar right next to it already, so I have just left it there. I have had 8 BC surgeries, including 6 to the left side with 6 IMF incisions and 3 vertical from the IMF to the nip, 2 incisions to the right, a ALND incision on my right side below the underarm, and little fat-grafting incisions on hips and abdomen. I had a bunch of surgeries before BC - left knee, 2 C-sections, vascular surgery on each leg, a hyst/ooph that was external incision, a Nissen reflux surgery with 5 incisions, a tumor removed from my calf, a tonsillectomy and a vaginal delivery for a fetal demise - at least the scars for those don't show! My PS nicely put the fat-grafting incisions at the edge of the C-section incision and one of the Nissen incisions to hide them, but they retain some darker pigmentation since they are more recent. Add in the more than 20 skin cancer removals - ROADMAP!
soriya - I did not use shampoo when I had no hair - although some say that you should. My hairdresser gave me Bosley products when my hair started to grow. She also said to start the Biotin 3 weeks after my last chemo. My hair came in more slowly than a couple of people in my chemo group that posted pictures but once it got started it has grown fast. It is at least 3" below my shoulders and I have cut it a lot - like 15 times. Here is the link. I initially got them from her at the salon - it is a 4-part product, but you can get it cheaper at Ulta. The first link is the shampoo/conditioner/topical and the second link is the serum.
http://www.ulta.com/ulta/browse/productDetail.jsp?productId=xlsImpprod5370079
http://www.ulta.com/ulta/browse/productDetail.jsp?productId=xlsImpprod53700690 -
6cats.
I make my owns soaps (goat milk and/or glycerine base), scrubs, lotions and potions...
I had hoped to be able to make a bunch for the holidays...just not in the mood. Have to start soon to allow for curing times.
V
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Thank you special K for shampoo info. What about skincare? any recommendation? I am using Lindi right now. i want to kno if I can use some other brand. Thanks!
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soriya - as far as skin care I have tried to use organic, gentle, and as natural as possible. I mostly use Boscia and Korres products. Here is a link to a website that you can look up specific products, or look for the recommendation by type of product - they are ranked from best to worst for ingredients.
http://www.ewg.org/skindeep/?gclid=CIu8ydyHv7oCFejm7AodSWUA5A0 -
hi all! I am hopelessly behind but wanted to share what I believe is an unbelievably beautiful and important art project.
"A visual world few have seen where grace, guts, pain, and femininity all cross paths to expose a deeply moving side of humanity."
-LIFE
"The SCAR Project is a shockingly raw, yet strikingly beautiful, photo series that shows a side of breast cancer we're not used to seeing: the reality."
-Forbes
"An incredibly moving and thought provoking work."
-Psychology Today
"Through his photographs, David Jay shows (finally!) the true reality of cancer."
-Le Post France
"An amazing testament to strength, courage and inner beauty that transcends society's standards of outer beauty. Seriously, brilliant."
-Tina Carroll0 -
Thank you Ashla
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you are welcome Naiviv!0 -
Pbrain, I wanted my port out right away. After all the treatment, plus AI for 5 years, onc said my risk of recurrence is somewhere around 5%, so I went with that. Had it out a week after last Herceptin.0 -
Pbrain. I'm not so sure prejeta has no SEs. I just had my first dose of it with my 4th infusion on the 18th. Before this my SEs were mild. This weekend I had very weird pain in my back/spine.now,I have the big D and am extremely fatigued - struggling to make it through the work day. I slept 12 hrs last night. This is week 2 - I am usually feeling great by now. Oh, well,I hope it is worth it. Hopefully, this will pass soon.
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hi everyone
I've been busy all good. Family wedding ect Anyway, hope everyone is doing well. Just heard from my cardio that the echo is ok (no changes) and I can continue Hercpetin. Yeh!
Special K, thank you for your input on 90 minutes vs 30 with Herceptin. Not sure if that made the difference, but am sticking to it.0 -
October is breast cancer awareness month...get those puppies checked!
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chickad - lol!0 -
LeanneF: glad you joined the group! Thanks for your honesty about your SE's. I am starting my Perjeta/Herceptin combo tomorrow and am a little nervous. I am hosting a football party on Saturday (mostly family thank goodness) and so am praying for no D!!!
Now that I am moving along in this process, I am so happy to learn of products for my hair that is sparse and sad looking. I can't wait to check out the Ulta links. Thanks Special K. I have even checked into getting a full head of extensions. I guess you only need 1-2 inches if growth. Anyone ever done this?
ChickaD: you made me smile with your posted pic. Thank you0
