Spring 2014 Rads

Welcome ladies-

I am in starting my second week Monday and I have only slight pinkness, so far.  No itching or peeling.  I wash with Aveeno moisturizing liquid soap and use unburn once when I get back from tx before putting on Aquafore.  I apply Aquafore a couple of times before I go to bed to make sure the skin stays moist.  You don't have to gob it on, just a thin coat.  The main side effect I get is breast gets warm for a few hours afterward and I get the chills for about four hours like when you get a sunburn.  By the next morning the skin returns to almost normal except for tanned a little more and I feel good. We are here for you.  The biggest complaint I have is those damn majik marker pen marks all over the breast instead of tats.  I would much rather have three dots than eight inch markings all over my breast.  They told me I can touch it up myself on the weekend if it wears off.  Well, I am not gonna do that.  It's their job and responsibility to get those markings accurate and I am not about to relinquish them of their duty.  I am wondering what those chemicals are doing to my skin being applied day after day for six weeks.  Ok I am done--just sayin  Enjoy the two days off I felt great today had boundless energy.  Got caught up on house cleaning/chores.

Hi ladies, I have a question for you.  I went back to work last week; I am a teacher, so I am on my feet a lot.  I can't believe how tired my body is.  All my muscles ache and I feel really old every morning when I wake up.  Before miming back to work I walk walking 3.5 miles a day and was fine.  Now that same walk makes my legs tired.  I am not used to wearing shoes every day and carrying bags with papers and books.  So my shoulders are tired too.  This never used to bother me.  Are any of you achy?

Hi all. Glad I found this thread - thank you for starting it and keeping it going. I had my last chemo a little over a week ago and am meeting with RO Monday to get the plan together, so am just trying to get my thoughts together to deal with this next "adventure."  

My chemo nurse told me to start applying aloe (from the plant, not a store bough gel) right away and do it 2x day through radiation. I have been doing it so far but Of course I will now hear what RO has to say about that  

I don't really have any questions or helpful tips (yet) but wanted to say hello and wish all of you the best through this journey. My New Years resolution for 2013 was to do something outside my comfort zone every week. Little did I know then how far that could go!

I also read about the butterfly tattoos - I love the idea. I don't have any tattoos yet but thought I might get one when this is done - and be inspired by a connect-the-dots concept. But a butterfly would be a great symbol. And our yard is a Certified Butterfly garden so it would be appropriate.  

I thought I might also go rent a Harley after I get my radiation tattoos - while I am still bald and often wear a bandana - seems like yet another "look"/adventure  

Best to all!

Cindy

Hi everyone, 

Would you believe I still have not gotten a start date on my Rads? It's been more than 4weeks since the CT and markings. All they will tell me is that they are still working on it. I have no idea if that is good or bad. Anyway, I finally told them on Thurs that I don't want to start this week. I have been sitting here for over a month waiting for their call. I could have been visiting my kids and grandkids in Fl. So I am going to drive over to Charlotte, NC to spend a few days with my 9 mo old granddaughter. Not crazy about driving that far by myself( it's about 3 1/2 hrs), but it's the only way to get there. I have driven it several times before with no problems, but not since dx and surgery. I'll only be there for a few days, they are having company next weekend, and for several weeks after that. I figure I will not be able to travel for at least 7 weeks once the Rads start, and I will feel a lot better after seeing the baby. 

welcome newbies!

I got a call from RO on Saturday, which freaked me out at first...thought something was wrong, since it was Saturday! But, just going over my planning...I am hoping to get a call by tomorrow to schedule my rads...seems like it's taking forever. Found out RO was on a vacation in between and that's what was holding things up. He was talking about "hot spots" and I should've asked him, but didn't think about it til we hung up. Does anyone know what that means? Anyway, he said I could  do the short regimen, but I am just over the guidelines, so will be doing the longer one... bc I have too much tissue...big boob, I guess is what he means! LOL. I will be glad to get it started anyway. Port removal on the 11th. Let's get this show on the road already! RO said NO lotions prior; will treat as needed.

I hope you all that are having SE's feel better soon. My stamina is still not what it should be, but has improved. I have been trying to walk daily. Maybe that's helping. Definitely not as fast as I used to, but it's movement! I also need to lose a few pounds and deter my bone loss.

Anne, enjoy your family time!

Happy Monday everyone~

Hi Ladies,

I finished 30/33 txs with the last 7 being boosts this morning. I was overwhelmed and scared at the beginning also.  There are still times when I feel like my heart is racing when I think too much about what I have been through and what the future may hold.  But, my treatment team and my support system have been phenomenal.  My best advice to those of you who are starting out - give yourself a few moments to acknowledge your thoughts and feel the emotions (without getting stuck in a negative place) while you are going through treatment.  Locking it all away is not healthy or helpful.  If you need to, find someone you can talk to about.  Cancer is real and scary but you can and will make it through this

I started noticing pinkness and heat on my radiated breast after the first treatment.  I was already starting to swell after the third treatment.  I found that those SEs lessened over the weekends and returned again after Mondays treatments.  I also found that I was having mild fatigue on and off throughout the day after the first week.   I had been managing these minor SEs well, but last week was tough.  The fatigue seems to be catching up with me, even though I have been able to keep it minimal by continuing to exercise.  I feel tired enough now that ever day life issues make me want to scream and run.  Oh, and I have been getting teary-eyed very easily too.  I also developed a chaffed area in the under arm on the side that is being treated.  It was from my damp sports bra during a 6 mile run (that hasn't been an issue until last Wed).  The nurse gave me a hydrogel pack, said to continue to use the Radiagel twice a day and to use 1% hydrocortisone cream (a mild steroid) three times a day.  It was really sore Thurs and Fri, but I managed to get my 10 mile run in without any extra irritation on Sat and it finally started scabbing over yesterday afternoon.  The best news is that the area is not part of the treatment area for my boosts, so it can just continue to heal.  

I have been careful to drink plenty of water, follow all of the instructions my team has given, continued to exercise and refrained from trying anything that my team doesn't recommend or says to avoid.  I have been told by the nurse and the doctor, that although my treated breast has been hot, blotchy red and itchy for a few weeks, my skin has held up extremely well and so have I.  I was glad the boosts started when they, because my nipple was extremely sensitive at that point.  It has not gotten worse, but it is very slow to feel better, even with aquaphor.

I have a one month follow up scheduled with the doctor and have been told to continue the Radiagel and other prescribed treatments until all signs of the treatment have gone away.  I have also been told that I should use a 15 SPF on the entire treated area religiously for a full year after the treatment ends.  Radiated skin reacts poor to sunlight and I do not want to experience that.  I have also been told that I will be getting a mammogram every 6 months as part of "being watched closely".  I am also scheduled to resume Tamoxifen on April 7.

Stay strong, be well and kick cancers butt!

Hi Everyone! I start on 4/9. Dr has scheduled 37 sessions. Due to my oncotype score of 9 I was able to skip chemo. Hope I made the right choice. But, I feel confident. PET scan was clear. Thank you all for being here!

Finally got the call that I will start rads tomorrow!!!

I cut the rest of my pre-chemo hair, that endured the chemo, today, to match my stubbles. I kind of like it, actually!

well tired of the majik markers aquafore takes them off. Anyone else having trouble keeping the markings? They asked me if I want tattoos. Can anyone give me advice I have 27 more to go.  How many tats did you get? Suggestions on how to keep marks on?  thanks

Good Afternoon Ladies,

I've finished 25/31 today. Tomorrow I start the first of six boosts and I'm finished. I've had severe fatigue and some comprehension and memory problems, but my RO has determined that it isn't rad related. I also suffer from RA. My skin is holding up wonderfully. I haven't used anything on my skin other than Aloe Vera Gel once in awhile when I'm feeling sore. My underarm is tan but not red, and I have just a slight redness under my breast area. Hopefully that will continue. I will check in when finished with rads. Good luck to all that are starting, and congratulations to all that have finished!

Lonnie:  Radiation to the lymph node area does increase the chance of LE or of LE worsening.  I do not know by how much, but I do know that it is not a given SE.  Speak with your dr about your fears. 

I had tattoos and I cannot even find them now that I am so damn red.  We have no option here.  But honestly, mine are as tiny as a pen point dot.  Like a very tiny black head pimple.  Freckles are much more noticeable.  But before you get them, if it is an option for you, ask to see what their tattoos look like.  I have heard different stories.  My RO had them on his arm to show me

My skin held up until after the radiation ended.  Skin definitely can continue to worsen.  I am so sore right now.  Advil does relieve it, but I try to take only one a day or so.  And of course, now I decide to go back to work.  I have not had any fatigue though.  This is the worst possible sunburn ever that just keeps on getting worse!  Should stop soon and I cannot wait.    

I agree with the description of hot spots above as my under arm is the worst. 

Hi, Lonnie

I have not started radiation yet- it's been over 4 weeks since my CT and markings. But I do have LE. It stared after the biopsies. After chemo and surgery, I was sent to a therapist who massaged the arm, wrapped me from mid-finger to shoulder, then ordered compression garments. You might want to check with your Onc to see if that might help. I have been told tha LE worsens with rads. BTW, there is a thread on here about LE. I have gotten some very helpful info there- most important is that LE is different for everyone, and what works for one may not work for someone else. Good luck

Anne

Thanks ladies for all your responses to my posting.  I am no going to get tats just gonna live with it.  They said they will put the stickers on for the weekend to help preserve them. I guess I will wash less, but it seems he aquafore is the culprit.  Had dr visit today he said all looks good.  Glad to hear said I probably won't have a rough time with skin and rashes.  That would be nice.  26 more to go. Keep it moisturized, using cornstarch underarm and under breast for friction. I apply it after I get home from tx and after unburn and aquafore is applied.

Good afternoon everyone!

Well, treatment #2 behind me, only 28 more to go!  The nurse went to put my bracelet ID on my right wrist and I stopped her and said I needed it on my left wrist so I could use my right hand to cut it off.  She said - - Oh, just stop by and I can cut it off for you before you leave.....I said NO NO NO.  After treatment #30, all of my "bracelets" are going in a BONFIRE!  It will be smelly due to the plastic but hey, THEY ARE GOING TO BURN! 

So, last week was so stinking emotional for me but by Thursday on the drive home from work, I just let it all out and sobbed and allowed some self pity in and I have to say, I have felt so much better since Friday!  A girl's gotta cry, right?  Any way, Sunday night I was a little anxious for my first treatment on Monday but all is well, even though I am only going into treatment #3 tomorrow.

My big brother from Nashville arrives on Friday and will be with us for 10 days so I am looking forward to that!  Taking next Wed/Thurs off but need to work Mon/Tues and Fri; lots going on at work.

I asked about Aquafor lotion, etc and was told to hold off until I had side effects??????  I am one of those preventative people, what do you all think?

Looks like everyone is holding on and getting through without too much pain so far.  Tomorrow is 9 of 33 tx, awake because I had some deep pain un the muscle on the outer breast edge/ underarm. Took a Tylenol waiting for it to kick in. Can't wait for Fri to be over to get that two day break.  Skin still looking good, some splotchiness but still moist.  Using aquafore only and unburn when I first get home before I apply the aquafore.  Hang in there ladies - we can do this!