Fall Rads 2014

Hi!  First time posting...  Have a question.  I have received 15/25 radiation treatments so far and I am having difficulty swallowing & pain in my throat.  Anyone else experiencing this?  Anything I can do to make it better?  This is my second battle - didn't have radiation the first time.  It was in my lymph nodes this time, so getting radiation of the breast, armpit & neck.  I'm so close to the finish line but worried about this!  Any suggestions or advice would be appreciated.  Thanks!

Kwhitmo,

I'm finishing rads tomorrow. My RO had me positioned so that my head was turned to the left and my right hand rested on top of my head -- typical for aiming at both the chest and lymph areas. The right side of my throat was often sore and I had trouble swallowing. My RO suggested Magic Mouthwash which didn't help, though it did help a couple of others I've met. What worked for me was avoiding anything too hot or too cold when drinking or eating. I did also notice that if I basically rested my throat, it wasn't as bothersome. As soon as my boost started my throat issues stopped completely. One side effect that didn't linger.  

bride

Gilesmt -  gggrrr.... what a gongshow this disease can be!!  I too got every SE under the sun  I hope your machine starts to work, and that the rest of your rads go smoothly!  

Gilesmt....sounds like you have been through the wringer multiple times!!! Rant on...I would be!!! My RO never mentioned anything about the thyroid he did tell me about long term side effect that could happen to the lung but that could not be helped. I just hope they went that high because it was necessary and not a mistake in their calculations...hopefully my level will go down gradually with the meds.

Oh and yes I have done some reading about it and don't like what I have been seeing....

Way to go, Jeanelle!  Hope the SEs go away quickly.  Hugs!

charusa - I've been taking Armour thyroid for years and I was worried that the radiation scatter would make my hypothyroidism worse so asked the rad/onco if there was a - for lack of a better word "lead apron" like you wear at the dentist to cover my throat with and protect my thyroid gland.  She acted like I was nuts!

On another note, low thyroid can make your hair thinner and so does too much thyroid so it's a delicate balance. You have to start out with a very low dose and gradually increase it until your thyroid levels are good.  I had to cut the pills in half in order to do increases more gradually due to sensitivity to the meds (can cause anxiety/racing heart if increased to fast).  Synthroid did not work for me because my body does not convert T4 into T3 so hence the Armour thyroid which has both. I've used Rograin for about 15 years (about the time of menopause) so I've never been able to pinpoint if I had hair loss from low thyroid or from taking Armour.....

Gilesmt, sorry you're having such a rough time. My machine has broken 3 times as well. The first time it was down 4 days so they set up a rad plan for me on their other machine and then worked on Saturday so I could at least get 3 tx in that week. The next time it broke they were able to do me on the other machine because I already had a plan set up.  Now I'm on my last week  5 boosts that should have started yesterday. I got there just as the machine broke again. But because my boost plan is new and only set up for 1 machine  I'm behind again. I had plans to go to see my sister this weekend and stay for 9 days, I may have to put that on hold.......damn! These machines are so specialized and complicated with many moving parts it's no wonder they break down.  I'm hoping I can have 2 tx on Friday 1 early am and 1 late pm so I can still go see my sis. Well, try to have a good week.

I had one delay, the little red light bulb burned out, only set things back an hour. So glad I didn't have any breakdowns that changed my whole schedule up.

Blownaway: I had Lew take my photo with my hand on the bell rope BEFORE my last rads just in case I totally lost it afterwards - wanted at least one photo with the bell where I didn't have red eyes and tear stained face. Turned out I held it together through the bell ringing photos afterwards, where I got teary was all the rad staff hugging me.

hey girls, need some help. I have not read of anyone having huge purple patches, under the arm or under the breast, the stupid nurses who know I am blind are suppose to check, but my mom and daughter say I have under my arm deep deep deep purple, the size of large sticky note and a deep deep deep purple line about 1/2 in thick under the whole breast. I am trying to figure out it it is from walfrin and blood clots, or rads. And the machine broke down again today, I was pissed. I started boost, 5 minutes promise, I left after 45 minutes, I am so done with this shit. Anyone have deep deep deep purple, that feels like your skin is splitting in two.

MarieBernice, the boosts are targeted to the area of the breast (and wherever else) where the cancer was found to make sure it is killed.  The rest of the rads are done all over the breast (and/or lymph nodes).  You won't notice anything different except the tx may go faster than it had been.

Good morning friends.  I haven't posted in a while, I finished rads on 10/10; had minimal skin issues, was a little red and itchy by the time it was over.  However, and I'm so glad my RO warned me, it got worse before it got better.  Itchy, peeling, sore, brown, purple, itchy, hot, you get the picture!  Then, as quickly as it got bad, it got better.  I had about a week of actual pain/discomfort, I just rolled with it and one morning woke up and thought, "wow, that looks better!

I continue to slather on the aquaphor, I'm wearing a tight cotton t-shirt under my clothes - cut the collar and sleeves so it doesn't show.  I've not been wearing a bra, the tighter the tshirt, the better as it gives me some degree of compression. I hate these tissue expanders, cannot wait for exchange which I am sure won't be before April.

Getting back into running, slowly. Can't get myself to do any other kind of workout though, I'm still blue and having trouble getting up in the am.  On nights where I feel good and I'm tired I try to skip the ativan but end up having a lousy night so I've been taking one or two of them whether I think I need it or not.  My MO told me not to worry about it yet that although treatment is "over", I have a long way to go.  

I'm a little tired of feeling blue and getting teary so often. But I'm trying to take it in stride, knowing that there is an end to it somewhere down the line. I'm taking advantage of the social worker at the Cancer center and I've made an appointment with a naturopath.....trying to change my diet, etc. I feel very lucky to have an über supportive husband who lets me cry and let's me take time off from typical mom-responsibilities if I have to.  Yesterday am he told me I have until the end of 2014 to "not know what's wrong" every time he asks me when I burst into tears for no apparent reason.  He was kidding of course, and that pretty much stopped that episode in its tracks and I ended up laughing.  The ups and downs are  crazy.

I guess, overall, I'd rate myself a 6 on a scale of 1-10 as far as mental health and well being. Aiming for an 8....giving myself that extra 2 until after my exchange surgery! LOL!

At least my hair is growing.

Have a great day!

Jen

I finally have something to add to this very informative topic! I had my pre-treatments consultation with my RO and simulation yesterday.  I was able to bring a list of questions for him because of all the experience and information this group has provided.  I feel very prepared for what is ahead of me. Of course, I understand everyone has their own experience and mine will be too. Thank you very much for all of that.  We were able to discuss the thyroid issues, implant damage, skin damage, fatigue, accelerated treatment plans and, of course, what's right for me. We also discussed how my case will be used in future cancer board discussions about whether radiation therapy should be recommended for women with a similar dx.  I hope my experience will help other women avoid a recurrence in the future.

My plan is for 28 treatments without any boosts. It will focus on the lymph nodes rather than full breast area. My doctor did not feel that I was the best candidate for one of the more accelerated programs.  Quick synopsis of my situation: bmx in 2012 (chemo, no rads) with TE's and silicone implants in 2013; recurrent lymph involvement discovered last May with surgery and chemo (completed 2 weeks ago) My treatments will by using TomoTherapy equipment.  I'm sure every clinic feels their equipment is the best available, but I certainly know my RO is excited about this one.  It is one of the image guided machines. 

I had an interesting experience during my visit.  When I was getting ready to head into the dressing room, the Tech told me that I needed to remove my jewelry and did I know that I was missing an earring?  I was wearing a pair of fairly large peridot stud earrings.  We back tracked to the places I had been in the clinic and my DH found the earring in the check in area, but the butterfly back was not found.  I felt lucky to have the peridot!  I changed into the gown and went to the CT room.  The Tech, who had been in of the gem search, and another woman put me on the table and started marking me up.  The Tech said that he needed to line up my belly button so he moved my belt buckle and laughed.  He found the back of my earring in my belly button! The other tech said, "Oh, I thought you had a belly button ring!"  I just know this is going to a clinic story for a long time.

Coyote, what a great story.  You're definitely at the right place.  Good luck!

Charusa: I've been on synthroid for several years and do the same thing, have a mug of water by my bed and one pill taken out of the bottle sitting in a little dish, have my alarm set with 2 alarms, the time to reach over and take my pill and go back to sleep, and an alarm for when I want to get up. I rescheduled all my vitamins and calcium pill for supper time so it's no where near my synthroid. Also, hadn't had any trouble with thin hair from it.