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Limner

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Pathfinder Angel
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Reply with quote  #1 

So what about the .".....risk [of] damage to my lungs, heart, or a future cancer that rads can though rare[ly] cause....."  What about your thyroid, Gina?  Any herb I can eat that will protect me from all evil while still allowing cancer cell death?  It seems the surgeon did take a layer of muscle of the chest wall (clear margins) in a "partial mastectomy" procedure, and the radiation is standard after that (3N).  Just wondering what I am in for next, and how to best protect myself for the long haul.  Thanks for your thoughts on this next chapter - M    


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nosurrender

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Reply with quote  #2 
Hello Mary,
I have had radiation twice- once for each side.

I had my lung scarred and it contributed to "radiation induced asthma" which is well controlled now with Singulair and the occassional puffer on really moldy days.

My thryoid went hypo and I take synthroid. No side effects at all except it makes it easier to lose weight. A bonus I dig!

I think the biggest thing to worry about is not being given the proper cream to protect yourself during rads.
So I will start my chant now:
GET BIAFINE RE CREAM AND USE IT FROM DAY ONE.
It really WORKS! It helps PREVENT burns.

Now, they will tell you all you need is aloe vera.  Um, no.
Or they will say use aquaphore. Hell no.

I learned this the hard way so if your radonc won't give it to you then ask your onc, if he won't give it to you then ask your PCP......!

I had rads to the chest wall, under the arm, side of my neck and collar bone. I am OK. Just get the Biafine!!!

Love
g


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Limner

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Reply with quote  #3 

Thank you for that, Gina.  I take it the Biafine is a prescription lotion?  Too bad, I have aloe by my front door.  But I saw a study a while ago that compared rads with and without the aloe, and concluded the aloe did not help.  I know from my own experience with a hot radiator water burn on my arm that aloe did help with that scald.  It alleviated the pain, and I had no blisters or scarring.  I slit a whole leaf spear and taped it to my arm.  Maybe I should eat the aloe  by my door.  :-)  M


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Calico

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Reply with quote  #4 
Hi Mary,
I used Vit. C Creme by Bioesse with a bottle of halyronacid (or however that stuff is spelled lol), expensive stuff my PS recommended.
I got a permanent tan, no blisters, but some peeling and ITCHINESS for a while.
My thyroid is also not to happy.
My values aren't high according to the old labs which cut off at 4.8 for TSH (Endocrine Association says 3.0).....oh well



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coco

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Reply with quote  #5 
Hi Mary,

I started to burn suddenly after two weeks. I tried a bunch of stuff (aloe, calendula, aquaphor, etc, etc.) with little effect, but towards the end of treatment the nurses gave me Silvadene and that did seem to turn things around. But I wish I had known about Gina's recommendation of Biafine back when. I'd say do whatever you can to get your hands on the stuff and use it from the get-go.

Best wishes...

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Indigoblue

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Reply with quote  #6 

Hi Mary,

The information here is fantastic!  I wish I'd known what to expect before beginning Radiation Treatment.  I knew about Biafine from using it for a severe burn.  It's by prescription only, and the Radiologist Oncologist didn't write anyone prescriptions for anything.  I remember thinking, how odd.

If you wanted a prescription you had to go the Chemo Onc, the Surgeon, or your PCP.  I begged for the Biafine, and was told to use the Aquafor.  I used it, but didn't like the Petroleum Base.  It probably wouldn't hurt to use all of the above~ better safe than sorry later...

I purchased Lilly of the Desert 99% Pure Aloe Gel, and also a gallon of the juice.  After Rads, I took a cool shower, bathed in the juice, applied the gel over that, and before going to sleep.  I used Aquafor twice, and didn't like it.  I kept the Aloe products in the fridge, and it was extremely soothing.  It also helped to eliminate a rash I developed during the Taxol Treatment.  
It's great stuff.  Working with molten metal, glass, and welding, I've seen Aloe work miracles on burns.  It's the only product that eliminated sunburn misery.  The trick is to keep it refrigerated; the cool gel also eliminates itching. 
 I've been considering drinking the juice.  I read it helps to return a disrupted digestive system back to normal.  I'm looking for some advice, as to whether or not it's safe and/or effective to take internally.  

I didn't have any Radiation burns, and my skin was not effected in the least. They zapped the armpit, chest, collar bone, and went pretty deep because the tumor was 2 mm from the chest wall.  
 
The important thing to remember is to NOT apply anything BEFORE Radiation Treatments.  Always, AFTER.  The fatigue can sneak up on patients;  I never knew what fatigue was, and Radiation Treatments can cause it.  Driving long distance to receive the Rads was exhausting.  After it was over, accumulative effects bothered me for about 5 or 6 months. 

Nobody told me what to expect, or anything at all.  I had to find out myself, as others here at No Surrender say:  the hard way.  Be certain to drink lots of water, eat nutritiously, and get plenty of rest.  Very important!!!

Hope it goes as easy for you as it did for me...I actually enjoyed it.  The people were wonderful, and it was interesting to talk with all of the Scientists, Physiologists, Docemetrists, and Techies who worked behind the scenes. 

Love,
Indi 

Limner

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Reply with quote  #7 
Indie, You are no doubt the Aquarian, talking to all the different specialists while you are having your radiation!  Keeps things interesting and helps us to get a wider perspective, I wager.  Thanks for all of your advice.  You seem to have fair skin, too - I am surprised you did not burn. It is generally fine to drink pure aloe vera juice, and I was adding to my smoothies for a while.   So many good things I could do for myself, and instead I want key lime pie....
 
Does the thyroid take a direct hit, or is it affected by dealing with the radiation fallout?  Many thanks, Coco, Calico & Gina.  I wll be ready with some healing balms.  How long do these sessions take?  Lunchtime?   - M    

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coco

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Reply with quote  #8 
Hi Mary,
I think I remember the sessions taking about 15 minutes, once things got started. The wait for your turn, however, can be a little unpredictable. Sometimes, at my facility, they need to stop for maintenance and occasionally work with only one machine. That could slow things up a bit, but usually it all went pretty quickly. Good luck to you!

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Karen1956

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Reply with quote  #9 
Mary,
Rads were relatively quick at my clinic.  I was the last appt of the day and often I barely got to sit down before I was called back.  Then it was change clothes, wait another minute or two, get set up at the machine and be zapped.  All in all, I was there 20 min or so and never longer than 1/2 hour.  I was lucky as the machine was never down.  I hope rads go smoothly for you.
Limner

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Reply with quote  #10 

Thank you CoCo & Karen - Isn't it wonderful that we can just post all these questions and quandries and get responses from each other?  It has been such a temendous blessing for me physically and mentally and emotionally and and (how many parts do I have?)  every which way.


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wedsnthings

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Reply with quote  #11 
Hi All,

I start rads tomorrow and I am equipped with my Biafine ointment but I'm not looking forward to the fatigue. I'm still tired from chemo. Does this ever end and when it does then what??? Sorry about the whine but I'm just tired of being tired.

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NATALIE
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Reply with quote  #12 
Hey Natalie! Sorry I missed this.
You started your rads... Start the Biafine right now- every day. Just don't use it before your treatments.

About fatigue- you can combat rads fatigue by eating a high protein diet. It really helps! And remember it is cumulative. You won't feel it for a while and you can ease it with the diet.

About a month after you are done with everything you start to feel better. REALLY!!

Big hugs and Love to you
g


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wedsnthings

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Reply with quote  #13 
Hi G,

I have to tell this story. I had a waterproof bandage on over the spot were the port was removed. The rad tech could not locate one of the freckles that they placed on me for the field marker. I was asked to remove the bandage which was really stuck to me. They then proceeded with the treatment. By the time I got home the area that had been covered with the adhesive was itching and irritated. I used the creme and it sooth it for awhile but that area was raised and pink so I saw the Dr. today and told her that I know there should have been no reaction this quickly. She agreed and wanted to know if I was allergic which I'm not. We canceled for today and she told me to see how I feel tomorrow but also told me she would like to get at least 3 treatments in this week. What do you think of the scenario???

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NATALIE
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Reply with quote  #14 
I just wanted to chime in here and say that I had radiation after a lumpectomy 6 years ago, and had a relatively good experience. 

I have super fair skin, and I turned red, but it was not an angry red with irritation.  I just slathered up with Vaseline Intesive Care everyday and patted myself dry in that area after a shower instead of rubbing a towel roughly to dry it.  Sometimes it felt like it was 200 degrees inside my shirt, so I would put an ice pack on my breast for a couple of minutes.

The fatigue was big some days, and I was not above taking an afternoon nap.  I also ate small meals more frequently to keep my energy up.  It took a good month or two before the fatigue went away.

Also, my appointments were always fairly quick and I never had to wait long.

My breast was a different color for a long time, but now 6 years out my breasts look equal in color.  The only thing different is that my radiated breast shrunk a bit in size and my nipple is a different color.

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Limner

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Reply with quote  #15 

Well, I met with my newest care-person, the radiologist from Russia - She is a very warm and engaging person, and I felt she was very professional yet open until I brought up the BIAFINE.  She said she found in her experience that it did nothing, and gave me a recipe for blender aloe gel.  She even suggested I drink it, Indie -
 
I know she thinks she has the answer, so I now I have to "cross" her.  She gave me a coupon for Aquafor.  I also do not like putting petroleum product on my skin - hey, I think I have two kinds of cancer from using petro-chemicals. 
 
Gina - does Edge have anything to say about the Biafine?  I need some ammo.  Radiation is another offense entirely.  Tatoos????

Wedsnthings- the bandage adhesive is nasty stuff - your skin may have been reacting to it, as mine does.  What is wrong in this picture? 
 
Radically yours - Mary 



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nosurrender

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Reply with quote  #16 
I don't know about Edge with the biafine but I can tell you as a two time breast cancer survivor- I have done rads TWICE. I KNOW FIRST HAND that it works.
Everyone I have told this to has been happy. And those who didn't use it have come back saying they wish they had.

Ask that person if SHE HAS DONE RADS. "in her experience" is great- it doesn't count if you have never walked in our shoes, no matter how much they think they know. Go over her head and ask the rad onc or your PCP or even your Gyn. 
 IT WORKS.
It was invented for the military originally to protect against radiation burns in the field.

 Just insist. Tell her thank you for your input but I REALLY WANT THE RX FOR BIAFINE.

Be a squeaky wheel. I had to the second time. I said- "yeah yeah yeah aloe vera- very nice. Give me Biafine."

Love to you
g


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nosurrender

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Reply with quote  #17 
Natalie, I get that every time people don't use paper tape on me. I get like poison ivy from adhesive on bandages.
Put some Aveeno with cortisone for itching skin on the bumps. It is the only thing that helps.

this wasn't from the rads, it was from the bandages.
I am so sorry you have this too!
Love to you
g


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Limner

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Reply with quote  #18 
We are such delicate creatures - Hey, we are!  We have to act like solid kyptonite, but we are finely and wonderfully made.  One nurse put some kind of oil on me before the port bandage - a protectant.  The adhesive still stuck, but it was a nice thought. 
 
Gina. thanks for the emphatic statements on Biafine, and I will quote you.  Since my skin is reacting to everything right now, I have no reason to think the radiation will be any exception.  I will get it from one of my many Drs.  Now I need a nice islander to rub it on me....

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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
wedsnthings

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Reply with quote  #19 
good evening all,

I started with the biafine right away and the itching went away after a day. Thanks for the shout outs of support. I think this part is going to be a lot smoother than chemo. (I hope) 

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NATALIE
nosurrender

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Reply with quote  #20 
Natalie! Oh yes it will be smoother!!  I am SO HAPPY you got the Biafine and it works!

Mary, you fight girl! Get your Biafine! See what Natalie said??

The funny part is they all told me that I wouldn't burn because I am dark skinned.
That was the biggest load of poop I ever heard.  I had severe burns.
So you fight this one baby!!!


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