Starting Chemo, November 2013 Group
Comments
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bec, quirky: Thanks for the feedback on post rads SE.
Lisa: No worries! Everybody is different so you may not experience the same SE. And radiating hair sounds nice!
Ellen: Your curls are impressive and stylish! I love it! How far are you PFC?
I tried to dye my hair today with all natural henna based product. The idea was to colour the white hair dark brown. After an hour of keeping the thick paste on my head I washed it off only to find out that my white hair actually turned.... Wait for it.....ORANGE!!!
Thank goodness this stuff is only temporary and will wash off.
As far as my rads skin, I noticed after 8 days PFR that the little grainy blisters are turning into a dry, itchy, peeling skin. The underarm area feels like an abrasion. Yay! Some progress!!!
Here is a pic of my hair creation.
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Amazon, you can now call yourself a "ginger", as a friend of mine who is a natural redhead does.
I am 5 months out PFC, 3 months from finishing rads, probably the first one here to finish up. Hopefully my pics give others encouragement and hope for the future. -- Ellen
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ellen: Lol. I never thought I would be a ginger one day! You have been shining your light since the beginning!
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I know they say that blondes have more fun, but I've been a blonde and a ginger at various times in my life, and I can definitely say I had more fun as a ginger.
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Amazon, what is chaga tea? What does it taste like? Also, love the goner hair! My daughter is a red head.
Ellen, yiurmhairmlooks great, and it grows,fast!
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Amazon? For my rash I used viscopaste and it instantly start to work. You need help to wrap it twice in the affected area. I got a net vest instead of using bandage I wear that. I highly recommend people who had rads to use it if you have burnlike rash. It's excellent. You have to get prescription from your doctor I like your hair even Ellen's.
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this is my hair, it's growing fast. My hair used to be brown but now it's pitched black
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Amazon - I looked into turkey tail mushrooms after I heard that women use it for breast cancer. Here's a small study that shows it raises lymphocytes and natural killer cells Study. I can't find the original study that prompted me to take it, I think it was done in Japan.
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inks: Thanks soooo much for sharing the study.
What are/ will be your daily doses for all your supplements?
Smrlvr: Chaga tea is a medicinal mushroom with one of the highest antioxidant properties. It is also anti-tumour. It tastes like light coffee and can be re brewed several times to get the max benefit.
I drink it daily throughout the day.
Phebe: Wow! Great hair! I wish mine came out as black as yours.
My hubby commented on my hair length a couple of days ago saying that I don't have 'fly hair' any more, but a 'WW2 Japanese soldier hair' style.
There is some progress!!! Lol
I am 9 days PFR and my skin started to peel. So my patchy looking hair is matched by my patchy looking radiated skin. Actually the colour of my skin ranges from pink to red to more purple. I feel like I am blotchy all over:,from my partially regrown lashes and brows, through partially regrown scalp hair, to partially regrowing skin.
Yay!
I am PARTIALLY REGROWN !!!
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Amazon, thanks for the info. Where do you get your chaga tea?
Inks, do yountakemthe turkey tail mushrooms as a supplement?
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smrlvr: I ordered mine from a Canadian company from New Brunswick.
Here is the link:
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I'm taking multivitamins and inno-cal-mac complex (promotes healthy bones) after rads. I ask my oncologist he said it was ok to take them. The latter one a person shouldn't take it if you have estrogen -dependent cancer
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smrlvr - yes, I take the turkey tail mushroom in capsules as a supplement (the dose they used in the study would be at least 8 capsules a day but I do not take that much). But I also read somewhere that eating white button mushrooms once a week would be beneficial with breast cancer, but I have no study to back that one up.
I have been working outside on our rentals for last 2 days and I finally feel like a human again. It's great to feel the wind blow through my brand new hair.
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I am 12 days PFR and my skin looks angrier than before. It feels hot, inflamed, raw and grainy. Two days ago my skin started to peel and I developed a few small weepy blisters in the axilla. Also the skin under the armpit has a greyish, rough, elephant skin appearance.
I had 25 rads of 50 Gys to the chest, axilla and supraclavicular areas with bolus every day.
Has anyone had similar?
What did you use to treat it with?
What was your recovery like?
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Amazon, mine didn't look quite as red, and I didn't get the greyish hue, but I had the same 50 Gys as you. Both my RO and MO seemed astonished at how good my skin looked, so I think the expectation was that it should look like yours. You're still so early PFR, that I bet it will start healing up rapidly in the next week or so. I hope so!
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Well, here is my weekly hair growth update.
My hubby even gave me thumbs up for being ready to go 'topless'.
I think that my hair is still a bit too short, so I end up wearing summer hats when going outside. It's also a good sun protection for my radiated skin.
I am 14 days PFR and my skin appears less red. It's dry, peely and feels leathery and tight.
In the areas where the old skin came off new pink skin is growing underneath. I am still tender and puffy, but was able to wear a sports bra for the first time since I finished rads. Yay! Some progress!
I saw a PS today and he said that the only option for recon is latissmus dorsi flap because I don't have enough tummy fat and a regular TE would not work because of the damage to the skin and tissue by RT. Oh well, something to think about for the next 9 months. That's the time he recommended before any surgery.
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If I could give you some of my tummy fat, I would. I don't want reconstruction myself, but I don't really want my tummy fat, either.
Now there's an advance they should look into: Tummy fat transplants!
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My hubby offered his tummy fat as well. Unfortunately, the fat has to be autologous.
I wish, there was a way to receive donor fat!
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ACK! Lymphedema....maybe???????
So here are the details: The skin on my left side (mastectomy and axillary dissection side ) has been "tingly" for a couple of weeks. It doesn't hurt, but it's a bit sensitive to the touch. Some parts close to my armpit are still numb, but the tingly area reaches from my front around to my spine. All at the same time, I've been trying to rebuild my upper body strength....nothing major, just some push-ups against the kitchen sink, lifting 5-8 lb. weights. I've also been painting the kitchen and polishing the cupboards. I've been feeling a fullness, tightness, sometimes achiness on my left side, but I've attributed that entirely to what I've been doing. After all, I sat on my duff not lifting a finger for months, now I'm acting like a normal human. I figured the skin tingling was the nerves waking up.
Well, the night before last, when I finally sat down on the couch to watch TV, I noticed my bra felt tight. Visually, things looked the same. I consulted Dr. Google ("truncal lymphedema"), and I saw a reco to wear the swell spot pad I have at night. So, I did a chest measurement and wore the swell spot thing to bed. By morning, my "circumference" was over a 1/2" smaller...and more comfortable. I could even see the swelling I still have over one drain scar reduced.
I called my lymphedema PT yesterday morning and relayed all this to her. She says that it sounds like my lymphatic system is getting worked with my additional activity, that it's figuring out its new normal. She wasn't concerned, but she also kindly reminded me to to the manual lymphatic drainage twice a day and to wear my compression sleeve.
Here comes the whiney part.....I DON'T want to live with the achiness/soreness/tightness/fullness, and I HATE doing the stupid MLD and I HATE even more wearing that compression sleeve.
That's it. I realize there's nothing here that's going to make me happy. BAHHHHHHHHHHHHH!!!!!!
P.S. Amazon, I love your red hair!!! I wish mine were your color!
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Amazon -- I love the middle picture. There is just something spunky about the short hair, the jacket, the hand on hip. Watch out world, here comes Amazon!
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Agreed! Very sassy! Bec, glad you are venting. Sorry you have to deal with the issues necessitating it.
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Bec, it seems you have done too much and your body is saying nooooo! It totally sucks, but MLD is the only thing we can do for lymphedema. I hate wearing the sleeve too, especially in the hot weather. This whole thing just sucks.
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Ellen, quirky:
Bec: So sorry to hear that you have to deal with swelling. Perhaps, you need to take it easy on yourself as you may have been overdoing it. It's not fun that you may need to wear the sleave. I understand that you would be tired of wearing it. Yet another thing!
Please, vent as much as you need. We are here and listening!
I am 15 days PFR and this rads gift seems to keep on giving. Today, for instance my skin became very tight, leathery, super dry, peely and it feels foreign as if I had a thin transparent film stuck all over it. Also, I have some shooting pains radiating down to my finger tips with a warm sensation in my hand and a sore, swollen spot near my axilla.
When I am attending to my badly burnt chest I am reminded of the biblical Job who after being struck with many disasters like losing his children, property and servants brakes out with sores. He then sits by the garbage dump, takes out a piece of broken pottery to scape them.
When will this end?
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Smrlvr/all, do you wear your sleeve all the time, or just when you're doing more than usual?
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Bec65: are you doing the exercise the surgeon give you to do after operation? I got a book that I tried to follow daily. Like you say our arms have been resting and need to slowly work our way up. I'm seeing a physio therapist twice a week. I'm learning how to exercise properly and to keep it up. Different movements. My right arm where they insert the port needs to be worked on. I find it so frustrating to continue with exercises but I have to do it if I want my right arm to be able to move same movements as the other arm where I got the operation. Hope your arm gets better soon.
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Bec, PT said to,wear it,whenever my body temperature will be elevated.
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Smrlvr, all I can say to that is sh*t, that is NOT what I wanted to hear!
But, I'm going to try to be a big girl. I didn't like flossing when I was told about fifteen years ago that I'd better do it twice a day if I wanted to help my gums keep my teeth in my head. Now I can't stand it when I don't floss. I will try to put TFS (its new name until I develop an affection for it) on before I go out for a walk tomorrow morning. Argh.
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My husband also volunteered his belly fat for my reconstruction.My surgeon's medical assistant said that if that would work, then she would be volunteering for every patient.
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bigt: LOL
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I am six weeks finished with rads and today I notice my radiated side is "puffer" than the ore side. Not like a lump but the entire radiated field. Have any of you experienced this?
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