Fall Rads 2014

PontiacPeggy

Jeanelle, I had checked out silvadene as it had been mentioned here. When I saw "sulfa" I made sure to tell my RO that I would not use it. I just used Aquaphor. And had no issues. I think I was lucky. Sorry the silvadene screwed you up HUGS!

lilyrose53

Hi all! I see many of you are having skin issues. My RO recommended emu oil. That was all I used until the final boosts, then I added Benadryl cream for itchiness. I finished rads last Wednesday, and can report that I feel great! Maybe I was just lucky, but I think the emu oil worked great. I bought it locally, but I know Amazon carries it. If you purchase it, make sure you buy the pure emu oil.

Wishing you all well, lilyrose

hubermel

Oh jeanelle, I'm soooo sorry you have to taken another break.

I'm sure you want to get this done!


Yeah, they told me the same thing about the silvadene.

And the hydorcortisone only works for me for a while before it triggers a flare with my sensitive skin.

Are you finding creams that work?


I've been looking through some patent information and upcoming products for radiation dermatitis.

It looks like at least one uses hydrogenated vegetable oil in their ingredients.

So I guess it's not terribly weird that I'm using it on its own (crisco) with good luck.

To me it breathes much better than aquaphor.


For a breast levitation device I keep thinking about using those neck wrap cooler things, with a bit of wire in the middle of them so they can be bent into a u shape to put under the breasts to cool and maybe lift up a bit.

PontiacPeggy

Hubermel - design your levitation device and go on Shark Tank!! I have a hair wrap I got from QVC years ago that has a wire of some sort in it that makes it hold bends and kinds (you use it to make a bun). Combined with that neck cooler idea and I think you have something there!

BTW, who cares if Crisco sounds weird? it works for you! That's the most important thing.

hubermel

Thanks PontiacPeggy!

Yes, those bun wrap things crossed with the neck cooler wraps are the inspiration for the design!

I'll need to make a couple and try them out while I'm still in pain to see if I can get it to work.

QUESTION ... Are (did) folks mostly having skin problems with the area under the breast or are there other trouble areas?

PontiacPeggy

Hubemel, I didn't have much of any problems from my rads. One possible reason is that my girls are small. Also my lumpy was on the bottom of my breast so not much there to droop

I'm so glad you knew what I was talking about with the bun wraps. Mine are about 2 feet long and a couple inches wide. I think you're awfully smart to try to find a solution to your problem. Good luck!!!

jeanelle

Hi everyone! Well the RO did not put me on another break from the radiation but did spread them out a bit more. I will finish my 4 whole breasts treatments this week (M-TH) and get a 3 day break over the weekend. Next week I'll have my first 3 boosts with a 4 day break over the holiday weekend and then my last 2 boosts the following Monday and Tuesday. I'm happy with that. Even though I think it looks terrible under my breast and now my nipple area is peeling, the nurse and doctor say it looks great. The itching I was having which I thought was a reaction to the cream is healing they say. All the dry dead skin is falling off and leaving very raw red skin which they say is the new skin.

I am still all for the breast levitation device. My skin issues are the worse under my breast and then around my nipple. I also noticed a small spot around my SNB scar that is starting to peel. One of the women who was going through radiation at the same time had problems with the skin under her arm.

It was a bit sad for me yesterday. There were 4 of us going through radiation at the same time, all a bit staggered in when we actually started. We decided that we were going to put our handprints in a circle like we were all holding hands. Yesterday when I went in I saw that the third of us had finished hers last week and I missed it.

Today it is off to see the MO to find out about the next step which i assume will be Tamoxifen. After that appointment I'm off to radiation. I was going to go back to work but I think I may just head home afterwards.

Thank you all for being so supportive here!

*hugs*

Jeanelle

PontiacPeggy

Jeanelle, hang in there! Glad your remaining rads are spaced out. That should help. Definitely take care of yourself first. You can't work if you are not well! Let us know what your MO says. I'm so relieved that we have so many things we can do to kill and prevent more BC. HUGS!!!

willowreed84

Hello,

I am down to 2 full rads and 5 boosts.  My skin is super sore under my arm.  I guess the under boob area is good because the te keeps it from rubbing other skin areas.

My rad techs gave me a sample of cream called Desert Harvest Releveum.  It is outrageously expense... $54 for 4oz!  It numbed my sore skin for a few hours.  It is a mixture of lidocaine, aloe and calendula.  Too pricey for me but maybe some one else can usd it.  It is on the internet for purchase.

jeanelle

Number 23 down! Only 2 more full breast and my 5 boosts left. With how they are spreading them out, my last day should be Dec. 2nd (not that I'm counting or anything). I saw the MO today and got my prescription for tamoxifen. I am to start it the day after I finish the rads. I go to see her in 6 weeks and she'll go over any side effects I may have from it. She wanted to exam my breast, took one look at it and said "ummm we will wait until next time to give you a breast exam. I don't want to touch that." LOL She also gave me my official Oncotype DX testing results. Nothing was surprising, my score really was a 4 and the tumor was extremely estrogen and progesterone positive. She wants me to lose weight as fat cells make estrogen. I knew that was coming too so a diet and exercise regime will start after the holidays.

I keep Peggy's mantra going in my head, "This is killing all the cancer cells." I will be very glad when I can go back to some sort of normal again.

PontiacPeggy

Jeanelle, please do keep that mantra in your head. It is valid! You'll do fine on Tamoxifen! Love your Oncotype score. That's wonderful. I'm sure normal is out there. Hope I find it some time soon HUGS!!!

clarrn

My worst spot is definitely over my collarbone, hurts to move my head BUT anything seems bearable because tomorrow I ring that bell Significant swelling underarm but I have truncal LE so no surprise there. I know it is supposed to get worse for the next 2 weeks but so far I have found it very manageable More irritating than anything else! Good luck to everyone starting out!

Gilesmt

jean else, I switched it up at the end, I did 5 boost then back to 4 regular, and I did great, under the breast healled, the. The last four days, I felt day three after the treatment and one last one and now I am on the mend again since last Friday. No new openings, only one small area under the armpit that is raw but does not hurt.

Anyone with info on walfrin and tamoxifen, they do not mix but both doctors are not communicating, one says you must stay on walfrin till march, the other is saying you must start tamoxifen dec 10, right before the wedding. Info says I could have severe bleeding and lots of problems, I don't want to be out of state when things happen. Anyone, please

Gilesmt

jeanelle good luck with the diet. I have been in the gym for over 6 weeks daily. Back to work three weeks now, and happy to say I have gained 2 pounds on rads. Which is an improvement since I gained 34 pounds total since I was diagnosed and I was sicker than most on here. I am so frustrated with the weight gain mainly because I can't figure it out

PontiacPeggy

Gilesmt, I don't think you should be out of town when you start warfarin either. Until the dosage is correct for YOU, you should be tested at least weekly. My husband wasn't and had really bad problems with being overdosed. Finally we got a home testing kit and that made it easy for ME to regulate his dose. After all I was watching what he ate and could tweak things. DH's cardiologist was more than happy to have me do all the regulating since I was doing such a good job of it. Good luck.

BTW, it is not that tamoxifen and warfarin don't mix. It's more that you have to adjust the warfarin dosage down since tamoxifen enhances it. Many other things effect warfarin. It works well, but it is tricky to begin with.

Susug

Jeanelle, so glad to hear you are getting brakes in betweenthat should help you a lot . I'm finished so far I'm doing good it keeps getting darker and a little tender with a few shooting pains. I'm finished but still like keeping up with everyone.

Does anyone know how long I will still be having affects from the treatments it's gotten very dark since I finshed last week?

PontiacPeggy

Susug, my RO said that my skin will likely keep "healing" for up to a year. Whatever it looks like at the end of a year, is how it is going to be forever. I wasn't concerned. Most of my "tan" on my chest has faded. My nipple is still extremely dark in places and I'm still rather tanned under my breast (which is where my cancer and lumpy were/are). I figured it would all clear up in a month so was surprised when it didn't. There's nothing going on that actually bothers me, just curiosity. He did tell me to keep on using Aquaphor for another couple months. So I am - at night only. And it does keep my skin from drying out. We'll look great eventually!

Gilesmt

if been on walfrin for several months, since chemo gave me blood clots in my lungs. Walfrin stops blood clots. Tamoxifen causes them. Also the two are known to have severe life threatening effects together. Internal bleeding and such. Tamoxifin also causes walfrin to drop the levels to low real fast. Has anyone else been forced to take them both. Anyone ever hold off on tamoxifen until you are off walfrin, I should be off in March

HomeMom

I have 10 more treatments and I'm red to dark pinkish most of the times. Itchy and sore in spots, especially at the top of my breast and under it. I use the auqaphor after treatment and before bed. I think I'm having boosts because the techs asked me if the RO had told me about them yet. Dec 2nd is supposed to be my last one. Ahhh

Blownaway

Still not understanding why I'm doing 24 full breast and 12 boosts for stage 1, no node involvement, 2 less than 1 cm tumors after having completed 4 TCH infusions (was supposed to have 6 but my doc was over ruled by a stand in doc while he was out of the offfice). Seems like too much. My breast is almost purple on the side and looks like a hot iron was held to it. Six more boosts to go and starting to worry about future problems.

Susug

Hey Blownaway, that does seem like a lot of radiation. It looks like we have the same diagnosis. I had 33 treatments the last 5 of the 33 were boost.

clarrn

Giles- I will be on warfarin and tamoxifen for 10 years after my radiation is done.

jeanelle

Susug, I don't know how long it will last after rads are done but right now my breast looks like it has been cooked. It is all pink, red, bright red,brown, purple and even black in some spots. They have really baked me well. All the dead skin is peeling off now and leaving nice raw pink skin. That area keeps growing larger but the doctor and nurse say it is a sign of it healing so I'll live with that. It hurts but not as bad as the blisters. Anyways, only 2 more whole breasts to go. The boosts will be by my incision which is just barely above my nipple so my nipple will get hit then but at least it is only 5 treatments and the underside and under my arm will have time to heal.

Homemom, we finish on the same day now. No bell here but I'll get a certificate and put my handprint up on the wall.

Also, am I the only one that feels like all we do is go to doctor appointments? I live relatively close to the hospital (20 minutes). I don't know how some you ladies do it driving an hour or more for treatment.

PontiacPeggy

Jeanelle, all my doctor appointments seem to have slowed down. About 1 a month now for awhile. I'm so lucky that I like ALL THREE of my oncs. They are marvelous. And I trust them! I've had to find a new PCP and I think she's going be a good one, too. All my doctors are within 10 minutes of home. Like you, I don't know how the ladies living further from their doctors manage it; must be awfully hard. Hugs to everyone. Stay warm and heal well!

jeanelle

Peggy, I know they will slow down once radiation and PT is over. This week has just been brutal with appointments. PT 3 days a week, Rads 4 days and then throw in an MO appt and I think my car could drive to the cancer center on its own. I know I'll have a follow-up with the RO once radiation is done (I think 2 weeks after) and I know I'll meet with my MO every 3 months for the next couple of years. I also have to find a PCP. I've only lived here a year and just haven't been sick to need one. The Nurse Navigator gave a name yesterday so I'll try to call and get an appointment with her within the next few weeks.

*hugs* to everyone out there.

PontiacPeggy

Jeanelle, It is really hard with going to rads daily. I had my first follow-up with the RO a month after my rads ended. My MO 2 weeks after that (and 2 weeks after starting my Arimidex). BS next month.

It's so hard to find a PCP! Good luck!

Susug

Jeannell, Yes it does seem like all I do is see my Drs. When I had my last treatment ( last wed)I was so looking forward to not having to go to BC center BUT then my husband said Susan you have appt with BS.. I must have lost my ever loving mind to make appt the day after rads.Then I get a call from my MD the next day for my regular 6 month check up. REALLY! I told the recptionist pleasedon't make me come to that apt all I've done is see docs. I take meds so I HAD TO GO. I'm sure any day the heart doc will call and say it's time to see him. You know one day your just enjoying life and WAM! The rug gets pulled out from under your feet. I know there a many women on this site that have gone through and are going through so much more the me. My point is life can take turn in a instant. I can say the one positve thing that has come out of this is all the wonderful women I have meet and feel like I know on this site tall have been great. I have a great husband and wonderful friends BUT they really cant relate to what we are going through. Not like y'all. Big Hugs to all Sus

Gilesmt

Clarm, are they giving you the same thing, don't worry, 2 different docs that don't talk. They say the risk is low. Where have I heard that, the risk for BC was low, the risk of lymphedema was low if doing a sentinial node, the risk of blood clots was low in BC, the risk of rads frying my thyroid was low, yet I got all that. Did they save me just to cause my death with walfrin and tamoxifen

Blownaway

Gilesmt - The first rad, I asked if there was a lead apron like the dentist covers you with to cover my thyroid/throat area but they acted like I was crazy.

Blownaway

Susung - Well I guess since our diagnosis is so similar, 24 full breast and 12 boosts isn't too different from what you are doing.

Jeanelle - Sounds like you're describing my breast. I asked the rad tech and my doctor if it was ok to for my breast to look this bad and still have 5 more boosts to go and they both acted like "Lady, that's nothing..."

I feel better now.  I'm in good company.