SEPTEMBER 2008 rads group
Comments
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Nancy, welcome to the post-nasal-drip/sinus-congestion-during-rads club. If anything you cough up is a color like yellow or green (I know -- Gross-Out!!), get an antibiotic, quick, or you'll start feeling like a truck ran over you.
I'm better, lots of little new pink spots & less itching. The edges of my bra were driving me crazy, though, so I put Puffs Plus tissues in that cup to lap over the edges. AHHHH! Puffs Plus have aloe & camomile & stuff in them, so they're nice & soft & cut down a lot on the clothing irritation. I just have that red, nasty, stingy spot under my armpit left, which I'm amazed hasn't turned into a blister. It's just red-HOT all the time.
Hang in there, sisters. Kathi
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Hi Ladies,
I had my first boost today. Not as bad as I thought it would be. My skin is red and itchy, but no blisters yet. My heart goes out to those of you that have blisters. I can't stand the red and itchy skin, I can only imagine how the blisters feel. I wear cotton t shirts in place of bra's and that seems to help. Keep mositurizing!
I will be starting Tamox in the next week or so. Not looking forward to that. For some reason I have gained a few pounds while going through rads. I want to get rid ogf them. I'm afraid the Tamox will make me gain more weight. I have never been overweight and I can't stand the few extra pounds I'm carrying around with me. Anybody else have this problem??
Good luck to all. Keep us informed.
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My rad onc said I have radiation folliculitis - its up around the base of my neck on the rads side and is just a little red- nothing infected or even itchy so far. I have one itchy tape circle I am going to ask about today- I think I am reacting to the adhesive more than anything.
I will hit the 20's today- number 20 of 33 - have to find those small victories in this battle!
Kristy
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Good morning, y'all! CONGRATS, tchmuzik!
I think...wait, I had a pretty good weekend, as the Texas Longhorns are #1 now! The weather wasn't so favorable for us though, as we now have about 3" of snow on the ground, and we're expecting 1 - 3" today...YEEEEEEEESH!!! I wish I could be in Texas now, but I'm over 1/2 way done with my treatments! I'll have 14 left after this morning.Yesterday, I went to see my onc, and this was the BEST news for me yet...he said I could get my medi-port taken out ANYTIME!!!...YAAAAAAAAAAAAAAHOOOOO!!!
So, I'm hopin' I'll get this thing out before I go home...My onc said he won't have to see me again until next year!As for all this 'staph' infection, the rad onc that was unprofessional with me, when I first started my treatments; she thinks that I MAY not have a staph infection??? What the heck?!? Even my onc didn't see an infection...
As for SEs, my chest has been itching like crazy...the unprofessional doc recommended benadryl cream, since the triamcinolone wasn't working. My armpit has become a red/brown color but doesn't hurt. My chest is a dark pink color, and itches, and now I've noticed my shoulder and the side of my neck are turning a little pink.
Anyway, I hope y'all have a great week!
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Wow, we're really moving along now, aren't we? Almost everyone's at least halfway! That's so great. I seem to have the worst of the s/e's...I wouldn't wish anyone to have worse. But even this is manageable as long as I can justify it as needed to beat the beast!
Last boost is tomorrow. Today they very nicely flushed my port...but it took one of the rad nurses sneaking a flush kit from the oncology dept. Since I didn't have my chemo at the same center, they were in a tizzy at the med onc reception 'cause I didn't have a purple onc folder, only a red folder from the rad dept. I was going to have to go all through registration again to get a purple folder for a five minute flush.
The whole point of asking them to do it was because my med onc's office hours are so inconvenient, I'd have to take off half a day. So while I was talking to the receptionist in their med onc waiting room, the rad nurse who was escorting me slipped into the treatment area and got a flush kit from one of the onc nurses. Then we went back down to the rad dept and she flushed me there. She was laughing all the way. Can't forget flowers for her tomorrow.
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The skin SEs seem to be in full force now. I'm not itchy anymore, just red and burny in spots. Mostly under my left arm and the chest area right across from it. I have two more regular treatments and after the last one Thurs, they will do the setup for the boosts that will start Friday. Dr. thinks I am too red, and she told me to use more of the steroid cream. I think I'm going to start going without the bra at work and see what happens. Over the weekend in just a tee shirt I was really comfortable.
Those who have started the boosts, how long did it take for the redness from the regular radiation to go away. Do you start healing while getting the boosts? How much soreness/redness do the boosts cause? Anyone have their nipple in the boost field? Mine is already so sore.
I've gained maybe 2 or 3 lbs. My appetite is stronger than normal, and I haven't exercised as faithfully. I really need to get back on track before it starts creeping up on me.
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My redness from the regular radiation is almost gone...just a little bit. But I got burned from the boosts. It is big like a saucer..and I got some little blister under the tape...my nipple are still really sensitive....
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Nancy 258-I have 6 boosts left and then I'm done. I feel like the worst part is over and the dr. said that, too. My skin is already starting to heal under the armpit which is where I had all the trouble. I feel there were 2 really bad weeks where wearing a bra was difficult, but now wearing a bra doesn't hurt anymore. I still slather on the Silvadene.
Skye64-it feels like my nipple just peels over and over again. It has changed so many colors throughout all of this.
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Well, this blister of mine has taken me over. It's not on my breast but below my armpit. I don't even know how I will make it to work tomorrow. Need prayers my way please
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Sorry to hear about your blister, Rose47. I will keep you in my prayers....
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I am officially in the 20's now with treatment #20 done. I asked for some more lotions today since aquaphor was not helping with the area of folliculitis. The aquaphor was fine everywhere else but the folluculitis is getting bigger- the techs didnt seem to think anything different would help but they gave me 3 other sample sizes. I tried one and it seems to help better than aquaphor with the itching. I am trying really hard to keep the skin intact and not broken so I wont have to worry as much about infection.
Rose- Prayers going your way!
Kristy
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Kristy,
What is folliculitis?
Thanks.
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Makraz - I was going to ask the same question.
Rose47 - sorry to hear about the blisters.
I'm just over half way done now and starting to get red but its splotchy. Seems to be more around the scar tissue. They use a bolus with each treatment so far and the rad onc said they may stop if I get redder. When did everyone start using the steroid cream - when you started getting red or when there was a problem with itching. Nobody really said anything to me.
NancyD - glad you last boost it tomorrow. How long were you going to keep the port in? My surgeon likes to leave them in but I'm leaning more towards getting it out.
Hope everyone has a good week.
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Makraz,
Folliculitis is an inflammation of the hair follicles in our skin. Radiation infamously overheats & ruptures the hair follicles & makes the hair fall out of them (which has its good points in the armpit!), leaving them open, red & itchy. Then they are vulnerable to infection, like staph & other stuff. So, that's why some of us are told to use an antiflammatory cream like benadryl ointment or a steroidal, and some of us are told to use an antibiotic ointment, like silvadene. Or both. Mine was a tad weepy right away, so I was told to use silvadene from the get-go, which did the trick. Silvadene also feels nice & cool (it's a standard burn treatment) & it's not as goopy as the ubiquitous Aquaphor.
Kathi-pedia
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Kathi,
Thanks so much for the information on folliculitis. I am never going to complain again! Well, I probably will. Still have 9 more boosts to go and that area already seems......I guess tight, sort of a tad bit burnt.
Thanks again for the info.
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Good description KAK - my area is on the side of my neck and extending downward now- almost where a Tshirt neck opening would be. I dont have it in the armpit area currently. Mine is not weepy which is why I think they are recommending the aquaphor and other ointments. I am going to keep a close eye on it and ask for the silvadene if anything looks weepy or worse. I had a septic staph infection during chemo and I dont want to deal with staph again even if it is just on my skin!
Kristy
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I had my last regular treatment yesterday and start my boosts today. My tech tells me the boosts don't have ALL the side effects the regular treatments do. Right now I have a burn under my arm that is red and brown looking. Hard to wear any clothing, but I'm in a sports bra with gauze at the armhole. Yikes, this was harder than I thought but still worth it! Does anyone know if the boosts effect the skin that is already irritated? My boosts will be in my scar area which right now seems to be okay.
Even though I haven't posted much, this site has been a Godsend for me. I pray we will all be laughing about this soon. Breast cancer has been an eye-opener for me. True friends stand by us and the others...well, who cares.
I am actually thinking I will probably miss the nurses and techs who I have seen each day for 7 weeks. They have been wonderful!! Not going to the hospital after work will be a relief. I'm still tired and crabby, but the end of treatment (rads) is in sight. I see the oncologist on the 29th and will start my hormone suppressing meds then. No matter what the side effects I know I can do it..we all can.
Love and prayers to all my friends on the site. hang in there
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I was given the prescription for the steroid cream at treatment #6. I was told to start the emulsion cream immediately and hold on the the steroid. Then a week later at treatment #11 they told me to start the steroid. I've been using it 3-4 times a day since.
I feel for you Rose. I'm particularly miserable today with the burning armpit. But, with the end in sight, it's gotta get better soon.
Has anyone tried massage or acupuncture therapy to help alleviate the radiation SEs? Did it do any good?
By the way I finally uploaded a picture. That's my 7 year old grandson Logan with me.
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NancyD - guess you didn't see my post last week - I finished my rads on Friday - what a relief!! Congrats on finishing today!!! This week has been great - didn't have to get up and drive an hour - get ZAPPED and then drive back an hour. Felt like a bird set free. The burning from the original treatments is sooooooo much better - almost gone actually - the burn from the boosts is not tooooo bad - it hurts but it is bearable. I'm peeling in my armpit - looks funny - it's not exactly a place I've ever gotten sun before - ha ha. I am still REALLY tired - have all this stuff I want to get done and have no energy to do it.
The place that fitted me for a prothesis told me to wait for about a week after radiation to start wearing the "real" prothesis - I've been wearing a different kind through radiation - she said the radiation still in the body could break down the prothesis - that is also why they suggested I NOT wear one during radiation. Gave me a creepy feeling - thinking about the radiation still being IN me - HEY - ha ha - maybe I glow in the dark!! Can't wait to wear the new prothesis - it is amazing - feels just like my REAL breast.
Still having some problems with my vocal cords - voice sounds really raspy - like I've had a cold - hoping this will clear up soon - started after about 8 treatments and has continued - the techs said the radiation was spraying my esophagus some so that is why the raspy stuff. Anybody else out there have this problem??
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Stephanie - yes to the armpit peel being strange. That was "virgin" skin as far a sunburns go. I think I'm on my second or third layer of skin coming off from there. And I have a cough, but no raspy voice. I also have head congestion, so I don't think it is rad related.
ALL DONE! Really, truly, finished! Where's the champagne?
Oh, there it is....bottoms up!
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Hello everyone! Hope this Wednesday finds everyone fine, and healing! I am now in the single digits - 9 to go - 4 regular, then 5 boosts. Doesn't seem possible. My rash is still there, sometimes itchy, sometimes not, and I have the lovely red/brown burn in my left armpit too, like many of you have mentioned.
Went to my onc today, and I will be on Tamoxifen after rads for ~ 2 years, which should place me for sure post meno, then he'll probably switch me. I agree with you PattyK - I can do it!
Congrats to everyone who's recently finished their rads - I can now see the light at the end of the tunnel too.
Prayers, Kim
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Congrats NancyD again!!!
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Yah Kim for being in the single digits. How soon after rads will you be taking tamoxifen? I don't see my oncologist until a week and a half later.
Congrats Nancy on being done!!! I'm sure they can't throw in any more surprises.
tchmuzk - I've been wearing my prosthetic the whole time and no one has said anything. I was thinking of switching to the one I had just after surgery because it's lighter and might feel better against the skin. I would hate to pay all the money I did for the prosthetic and then have it damaged.
I has #16 today and only 12 more to go. It does go quick.
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Congrats NancyD and tchmuzik.!!!!!
It is so a relief not driving there.....to the others: hang in there.....
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Congrats Nancy!! Go Celebrate!
Skye64, I can't wait to NOT drive to rads too. Only 8 more boosts....
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Had #15 today, my skin is starting to get really irritated, mostly around the edges. I have one spot that really itches, and my nipple is pretty sore. While marking the treatments in my calendar, I noticed that this week they coincide with the date - 15th treatment on the 15th - makes it easier to remember, but of course that will not be the case next week. I'm a numbers geek, so I found that interesting.
I was given the prescription for tamoxifen before I started rads, but am not to take it until I am finished - my next appointment with the onc is, I think, the day after my last boost so I don't think I will start until after I go back there anyway, but will get it filled to have on hand to start when I get the go ahead.
I can relate to the driving a distance - when I am at work, it's not so far, but Monday I was off, so I drove 45 minutes, was there for 10 minutes and drove 45 minutes home. Somehow when I have to wait a few minutes to get in it seems like the travel was a little more worth it.
Congrats to those done, and those on the home stretch!
Chris
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Makraz, I have a button someone gave me that says, "The More You Complain, the Longer God Lets You Live," so kvetch away!!
Yay to all our finishers & home stretchers. Oh, yeah, don't miss that 45-60 min drive, especially with the gas prices, even tho' they're down.
NancyD, good description about virgin skin in the armpit! Yeah, that's it. That's still the part that continues to bug me the most.
Nancy258, women on another thread (Breast Reconstruction - Massage thread) have mentioned getting massage/PT all through radiation & that it helped a lot. PT can teach you some good stretches to do, too, to keep your skin from tightening up. I work as a PT, so I'm a little biased maybe (LOL), but shrugs, shoulderblade squeezes & range of motion of the shoulder/arm all help. Also, after rads are done & the skin is not so sore, self-massage in the shower, where the tissue can get all warm & soften up a bit, is helpful.
Wish I could get a way with wearing a T-shirt to work!! Still stuffing Puffs Plus in my bras to keep the edges from rubbing too much on the red side. My colleagues at work are now "checking" my progress every day by peaking at the upper middle corner of the rad field that is visible over the neckline of my scoop-neck tops to see how I'm doing!! They are too cute. One of my buds, a male nurse whose mom-in-law has BC bone mets but is hanging in there, keeps bringing in info for me & a PT colleague bought me a pink-ribbon lanyard to hang my ID tag on.
My favorite thing, tho', is the "smile on a stick" that the speech therapist gave me! Well, she would know why we might need one of those -- she survived stage 3 colon cancer a few years ago!!
Kathi
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I have been quietly reading and taking notes. Due to the change in my plan, I was pushed to a 10/1 start date - so I just finished #11 of 33.
Susan - Thank you for posting your experience with IMRT. It was such a comfort to hear from someone who had been through that form of therapy. What is interesting is that you went 3 weeks, which is consistent with what I researched on-line. I will have to ask why I am still going for 33 treatments. My throat is soooooo sore. They warned me that the radiation would skim my esophagus, the throat is bad. I am taking meds for it & I also have the raspy voice.
Kristy - I forgot to mention that I picked up the rads burps. I never had them during chemo, but I sure do have them now.
Found out my WBC was 1.9 yesterday - they were debating on whether to proceed forward with rads. They gave me a neulasta shot (and flu shot) to help me along. Tired, sore and stiff tonight, going to bed. Thanks to all for the sharing the great information.
Jean
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Jean - Does your rad onc check you blood counts regularly? I don't think they did mine at all...maybe it the very beginning, but not again. I probably could have used the Neulasta this past week. I have a very annoying cold that has me dragging more than the rads ever did.
I never had burbs from rads. In fact, I was really glad to finally get off the Prilosec I was living on during my chemo. Now I just take a few antacids if needed. I'm also getting some needed calcium (killing two birds with one stone...less meds).
I'm impressed with how quickly my skin in healing, now. The worst area, over the center of my chest, is doing so much better. My underarm is peeling at bit still, but is no longer blistering or scabby. A spot on my back where the rads went through is slightly red and itchy, but much less than it was a few days ago.
We'll see how the boost area reacts. I'm expecting any reaction to peak over the weekend.
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Jeano77,
I was very fortunate with my treatment. To be truthful, after reading the posts, ! dreaded rads, because it seemed everyone suffered so. My first treatment, I sobbed and shook, and waited for the searing pain, despite the fact that the techs had already told me that wouldn't happen.
All through treatment I asked about when I would split open (I am very fair, freckles, etc. and used to burn to a crisp every summer!) Well, they were right, it didn't happen, and I'm so thankful!
Perhaps, your treatment is longer due to the size or grade of your tumor. Or, maybe because of the hospital or rads onco...?
But, hugs and best wishes. Hope you are feeling better soon!
Susan
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