TRIPLE POSITIVE GROUP
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Oh and one hair anecdote from Texas.
My hair grows slow. Has the entirety of my life. Didn't have a full head of the stuff until I was FIVE.
After a few trims, my hair FINALLY was long enough to get a "style" while in Texas.
I went to one of THE premiere places in San Antonio (ie, EXPENSIVE) to have a softer color wash and cut.
The woman recommended a soft color called "Pearl" to give my blond some sparkle. (Soft being defined as no harsh chemicals, just color to put on the hair and rinse out.) Said there wasn't bleach in it, totally safe...used it for years.
THREE HOURS LATER. (And I'm not kidding.) She's sweating and moving fast. Has applied it twice, washed, rinsed, repeated.
I knew when I reached up to touch my hair while still in the shampoo chair I was in trouble. It MELTED in my hand. Just disintegrated.
As she brushed it out, hair fell like rain.
Ultimately what I ended up with looks like a bad root job. My roots are super brassy, and the rest is well....still blond but NOT shiny, and much much thinner from disintegration.
She kept saying...."I don't understand this. I've used this stuff for years. Never ever have I had it turn out like this. Your roots are a completely different color" (not just a different tone of the same color, a completely DIFFERENT color.)
Then she said, "It's like you have two different kinds of hair! Your roots responded completely different than the rest of it."
Then I mentioned chemo.
I think she considered punching me. I'm not kidding.
I don't know anything about color/cut stuff except what I can point to in a picture. But, she assured me that when she was trained she took a class on "chemo" hair. Anyone heard of this stuff?
She said it is different for many women, but they were trained chemo takes about a year to stop being found in the cuticle. After that, the hair holds some of it until trimmed off. Well, I've been out of chemo over a year, about 15 months...
Anyway, she said if a woman's natural hair is strong and thick, chemo cuticle isn't really an issue. However, I've always had very straight fine hair. In my case, she said it was too much for the hair (the melting parts) and the reason the "roots" responded the way they did is because she believes they are chemo free.
She was very nice. Apologetic. Didn't charge me a dime! But I had so much melting she couldn't give me a hair cut either. My husband says he can't even tell....but that's because of the way I fix it...covering the thin spots..with what I call the HELMET.
All I can say is, if this would have happened pre-chemo, I'd have been a wreck. Now, meh, I am deciding if I will shave it back down to the new growth and start over. She's right about one thing though. The new growth is much different in texture and density than the older stuff.....
~sigh~
Here is a pic of me and my most awesome cousin last week in San Antonio.....you can't really see the ugly roots here....but they're there trust me! I'm on the right. She only has two more Herceptin and DONE!!0 -
TonLee I agree about the year thing. My hair grows fast. Wasnt to bad even on Herceptin and I noticed, exactly a year that my hair felt more like hair. I always had strong thick. BTW I think your hair looks great (actually you look great) but I understand what you mean about the shine. My hair still doesn't quite have the shine it used to have.0
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Tonlee....looking good! High and tight as my PS would say. Like the hair too. My foobs are not quite that high. They look almost too normal. I want them to be a little more va va bookish, without the size. I am going to have one more fat grafting at the end of the year and then that will be it. So I am telling him to do everything he needs to do in that last shot. Imwould like them to be fuller on top, however he needs to do that. Lol. Now, I am just being picky.
Jackboot, hope all turns out well. I have a good feeling. After all the surgeries I had last year, and chemo, I have an arsenal of painkillers and ambien. And I can only take about 1/4 of an ambien if I want to function the next day. So, if there are times when I get particularly stressed and can't sleep, I take one then.
Played in a women's golf outing last Tuesday. Benefits a community foundation and is designed to encourage women to golf, so you don't have to be good. Thought I would post a picture. My hair is thicker and a totally different texture than before. I hope it stays this way. I am almost 14 months post chemo. I have a little waviness and it has more body. Well I can't get the picture in here with my iPad. I'll have to try something else.0 -
Just read that uploading photos I to here isn't supported by the iPad so I can't change my avatar. You will have to wait to see the hair picture. Lol.
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Morning everyone:
JackBoo: Glad you are calmer now. Things always seem so much worse at night. Glad you are all scheduled for testing Thursday. I really feel it will be fine. I have a slight dent where my surgery was and guessing it will always be there....she took a LOT of tissue to make sure all the margins were clear. I'm guessing if I noticed a big change, I'd freak out too. I too questioned my decision on the lumpectomy but I'm good with it now and my bs never suggested anything else.
TonLee: Great picture. Your hair looks awesome. Goodness, what a stressful hair situation though.
I need to put up some before and after pics too. I finished chemo 14 months ago.
What starting point is everyone using for their "I'm such and such years" out......is it the diagnosis date, surgery date, end of chemo or raditiation date? Odd one for me.
Hooray, counting down the days until next Monday when I get deported!!!!
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Just diagnosed as Triple Positive IDC, have had PET, CT, BONE SCAN, ULTRA SOUNDS, BX'S, AND THEN BX'S AGAIN... MRI and three mammograms and x=rays since being diagnosed. Surgeon and I have been shooting for a lumpectomy but due to last biopsy that may not be the best route as they found cancer cells in the tissue in my chest wall and lyphatic system there. Was diagnosed June 28th and being doing testing and workups since, now seeing a Dr. at the Radiation clinic for their opinion, they are worried they can not get to the new area with a lumpectomy, and surgeon is afraid of the after result (appearance) since he is gonna have to take so much tissue.
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Welcome Angeleyes: Sorry to have to welcome you here but you've found a great source for information and great ladies. Are you triple +? The initial stage really is the worst IMO...all the tests and decision making. We are here for you!
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soltantio, are you icing your nails during the Taxotere?
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Welcome Angeleyes, sorry we're meeting this way. Wishing you the best in the dx rollercoaster.
Jackboo- Glad to hear they're treating it seriously, and hoping you get to do the silly dance thursday!
TonLee- great picture! You guys look wonderful. Sorry to hear about the hair issue, but you're right, it will come back.
Lago- No, chemo was a given for me. The lymph node that I allowed them to remove was not micro, but a full 'nother tumor. THe surgeon wanted to continue removal, but I said no. Already did the chemo so I am hopeful that anything else was caught. I was given 50% recurrence rate with surgery only, so I still weigh the 15% gain with chemo daily. I hate being a 'glass half empty' person, but I'm realistic.
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moni I was given a 58% chance of cancer returning with no chemo/ESD. But look at it this way… there is a 50% chance that you didn't even need chemo or hormone therapy. With me it was only 40%.
Angeleye This first part is so tough. It really does get better. Sounds like you're in the same boat I was in. By the time they got all the tests in it was 6+ weeks before they could schedule surgery. Too many of these BS and PS go on vacation in July & August. Feel like you're glowing from all the X-rays? Seems like you haven't had your chest X-ray yet
One thing to consider. If you do a lumpectomy agree and sign something that states if your BS finds more issues he can go ahead and do the MX. My neighbor went in for a lumpectomy. BS found more cancer hiding and needed to do the MX but didn't have her permission. He had to close her up then 2 days later bring her back in for the MX.
Dance icing doesn't work for everyone. I really think you need to keep your fingers pretty cold for it to work. I don't think peas keep your fingers cold enough.
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Lago: I did the icing of the hands and feet (along with the cold caps) and it was brutal. I had the ice packet (believe it was the CVS peas) in the dry ice so they were as cold as the caps. It was a tough time during the taxotere and I kept my nails....now having said that, I might have kept them anyhow. You just never know! Now, my eyebrows are a different story - I don't think they are ever coming back.
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I'd like to start by saying a huge thank you to everyone who helped me get through that horrible night. I feel priviliged to chat to such lovely people who are so kind and reassuring.
This is what happened: Firstly I was told off because I just turned up at the Jasmine Centre (breast clinic) without calling. This is because I was so dazed from lack of sleep and fear that I wasn't thinking straight!
Next I was examined lying down, while the doc checked my armpit and breast. She didn't seem to see anything concerning because she asked me to show her the area. To do this I sat up and put my finger over the hard ridge. She then felt the same area and said she couldnt identify a lump just a thickening that seemed like scar tissue.
At this I felt quite reassured because it was the same doc who saw me first time round, whisked me straight for a mammo, US and then biopsies. In Feb 2011, nothing was said but I could tell from her manner that I had BC.
I got dressed and she said she wasnt too concerned but could only rule out a recurrence with a test: a US. Not a mammo as this was in March. So its 9am Thur.
The doc ended by saying that I would be told on Thur but they could only put a treatment plan together next Monday. Yikes that freaked me out. I replied that surely a tx plan for a recurrence would automatically mean a mx but apparantley no.
My DH cannot reassure me but has tried. However it has helped to share this with you ladies. If I get good news then maybe someone else will see my post and avoid pacing around their house like a lunatic at stupid o'clock!!!!
Trying very hard to keep smiling and hoping for more than 2 hours kip tonight.
Liz x
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Hi everyone! It has been so long since I posted! Treatment and toddlers have kept me busy.
Tonlee- your picture is great! I hope to be as fit as you this coming year. You are an inspiration. Also, when I was visiting the snack bar at my herceptin treatment yesterday I realized that they actually give out juven! Hope I spelled it right. I was so surprised. I would have never known what it was until I read your post. The nurses gave me some. But, I have not tried it yet. Wish it did not gave sugar in it...
Also...and this might be tmi...but, did anyone have a long or exaggerated period when starting chemo? Mine has been about two weeks...my onc is stumped. I am a bit scared. Is this a sign that my ovaries need to be shut down? Or that they are shutting down? Also did anyone's breasts change and get textured or lumpy during chemo. My tumor is getting a lot smaller. But, my breasts are changing???
Jackboo-hang in there. Think positive, things will be fine, but, you are right to see a dr and ease your mind. You are in my prayers.0 -
Icing fingers/toes - I put the frozen peas in insulated lunch sacks and they kept the tissue super cold, in fact I had to remove my fingers and toes at times to keep them from going completely numb.0
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It can't HOIT! My cut and pastes and links always look like Japanese but here goes...
"
6 Simple Ways to Protect Your Breasts
It is estimated that over our lifetime women in the US have a one in eight chance of developing breast cancer. There are many risk factors for this disease that include the following: a history of breast cancer in a family member, BRAC1 and 2 mutations, increasing age, early onset of menses, exposure to radiation and pesticides, excessive alcohol (two or more drinks a day), obesity and lack of exercise.
Certain things such as family history and gene mutations we cannot change. However, there are a few simple things that we can do to decrease the chances that we will develop breast cancer. Here is what I have found.
1. Exercise. Just two and a half hours a week of vigorous walking can decrease the risk of breast cancer by almost 20%. Put on your shoes and get out there!
2. Eat a healthy diet that includes ground flax seed. A study done in Canada took 39 women with newly diagnosed breast cancer. For a month they were given either a regular muffin or a muffin made with 25 grams of ground flax. No other treatment was administered. At the end of the month they had another breast biopsy and the activity of the cancer cells was measured. Those who had eaten the daily flax seed muffin had a 31% decrease in the activity of their breast cancer cells. Those with HER-2 oncogenes (a more aggressive form of cancer) showed a 71% decrease in the activity of their cancer cells.
I suggest that you gradually add 2 tablespoons of ground flax into your diet. You can put it in smoothies, salads, and yogurt or in muffins. Make sure you keep it in the refrigerator if it is already ground. Caution: you need to increase the amount gradually or you will be spending a lot of time in the bathroom.
3. Eat mushrooms. Actually it is better if you get medicinal mushrooms in capsules. I recommend a blend of 17 mushrooms called Mycommunity that includes Reishi, Maitaki, Shiitaki, Turkey tail and Lion’s Mane. I also recommend capsules of Turkey Tail mushrooms in addition to the blend. Multiple scientific studies done around the world have found that mushrooms help to prevent breast cancer as well as improve treatment.
Certain types of mushrooms are able to boost the body’s ability to fight cancer cells. The beauty of these mushrooms is that they are food and have virtually no side effects unless of course you are allergic to mushrooms.
4. Drink green tea. Studies of Asian-American women found that those who drank green tea had significantly less breast cancer than those who did not drink it. How much to drink is unclear, but it is healthy and you might want to drink up many a cup.
5. Eat your veggies especially the cruciferous ones such as broccoli, brussel sprouts, and cauliflower. The indol-3-carbinol in the vegetables may reduce the negative effect of estrogen on the breast. Soy in the form of food can also help prevent breast cancer through a similar mechanism.
6. Take your vitamin D and calcium. A recent clinical trial found that supplementing women’s diet with daily calcium (1500 mgs) and vitamin D (1000 IU’s) reduced their overall cancer rate by 60%. Of course it is best to get calcium from the diet. New recommendations have reduced the amount needed to 800 mgs a day but vitamin D is most consistently obtained from a supplement.
Making just a few simple changes to your lifestyle and adding a couple of supplements can have a huge impact on preventing one of the most dreaded diseases for women. You can’t change your parents or your genetic code (yet), but you can be proactive about your health and do what you need to do to make a difference."
http://blog.sharecare.com/2012/08/06/6-simple-ways-to-protect-your-breasts/#cmpid=tw00001
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soltantio - Only iced during the taxotere for the nails - start 15 min before, then during, then 15 minutes afterwards. Just to say at the end of the infusion, with the caps and the lunch sack peas I would be shaking with cold.0
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soltantio my dermatologist put me on it 5 weeks ago to see if it would improve my nails. I finished chemo Jan 2010 and my nails are still lifted, brittle and brown yellowish color with deep vertical ridges. They usually use this stuff for fungal/yeast because that can cause this. But for some reason I tested that I didn't have that.
Usually this resolves but I had a really bad issue with all my nails. Even the first dermo who saw me during chemo said I got it bad… and he didn't even see it at its worst.
The gel is applied like nail polish. You leave it on for an hour but you can't eat with your hands or get in anywhere near your mouth eyes etc. Then you wash it off. You do this 2X a day for 6 months. It's a PITA
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Lago, I didn't use peas, I used crushed ice in baggies inside little coolers. My nails were super cold, too cold at times. It was pretty tough, since like Arlene I was doing the cold caps, and I also was icing my mouth. Like Omaz, I too had to remove my fingers/toes at times b/c they were going numb from the ice. I was always thrilled when the Taxotere infusion was done. My fingers got sore a week or so after my final chemo, but I never noticed any nail changes, thankfully. Who knows if it worked or if I was just lucky, but I wasn't going to not do it and find out the hard way. The brief period of being super cold was worth it to me to try to prevent longer lasting side effects.
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Soltantio - I used elastogel and they didn't fit tight over the entire head and I wasn't able to keep my head cold during the first infusion and I didn't used them for the carboplatin - so I lost about 70-80% of my hair but it came back in really fast. Where the caps fit tightly I lost significantly less hair.0
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I still can't believe you girls have to take frozen veggies to protect your nails - we have special gloves provided by the treatment centre. I think they get them from the Taxotere drug company.
Jackboo - I have a huge dent at my first lumpectomy site - he was a butcher who I have since dumped in favour of a gentle sweet female surgeon - can hardly see the scar from her work.
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Too funny susieq - they aren't the vegetable peas but cold packs called peas. I put my peas inside socks and put hands/feet into them.
Dance: I totally forgot about the ice and popsicles in the mouth too. How did we ever manage all of this!
Omaz: I forgot you too used the ElastoGels. Yep, above the ears it shed a lot and along the base of the neck. Heck, lots of shedding and lots after chemo was over. My biggest shed was right after #1. But it worked and I'm glad I used them too.
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Arlene - LOL - I really thought you took packages of frozen food. The gloves are nice though - I wonder why they don't provide them.
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Susie - I used real frozen peas from the grocery store! Brought in a big cooler. My husband was the cap and pea man.0
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I took real frozen Peas in too. See what good it did me. The ice in the mouth worked great. Got one sore on my tongue the first time but none after that.
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Ok, so I'm not stupid
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I am going to look into those gloves. If the drug company provides them I want to be sure my local hospitals have access.
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geewhiz - I'm pretty sure they were provided by the taxotere people. They are certainly nicer to use than putting your fingers in frozen peas
However, they didn't work, I still lost most of my nails but only 2/3rds of the way down. I think the big secret is to stay out of the sunlight. They do suggest painting your nails black, I tried but made a big mess. Wearing gloves outside is also suggested.0 -
I didn't have the nail issue. Started the frozen peas at the 2nd TCH I think. I didn't stay out of the sun either. I am an avid outsider.....but I DID wear acrylic nails the entire time.....no issues.
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Nail lifting is supposed to be a less common SE
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I kept mine with the shellac manicure and in real frozen peas. I also put the peas into Insulated lunch bags that fit my feet and some for my hands. My nails stayed looking great. I finished chemo in June 2011.
I kept it up during herceptin, even though the once said there is no proof it works with herceptin.
In February, they started to lift some, particularly on the sides, and break. They hurt like crazy, peeled and were so soft I couldn't do anything. my two big toes look yellowy. I am chalking it up to herceptin and tamoxifen combo as nothing bad showed up until 8 months after chemo. I went to a podiatrist who said he thought it was all treatment related but put me on some kind of anti fungal oil thing 2ce a day.
My one thumb that was bad looks a lot better even before the medicine, so I am hoping it was a brief bad stint.
I am not getting manicures or pedicures as I have to keep putting this stuff on. It makes me nuts.0
