Summer Rads 2014

count_it_all_joy

just realized I said "real stuff" when I mentioned the aloe plant - the other is real, just meant fresh.

3rdtimenow

Hi Issysmom and Sunshineink, your replies helped, I will remember that after the first day, which includes the tattoos, the other days will be much shorter in that painful position. I will also keep the injections in mind, if it gets too bad.        

   Hi count it all, I also live in Az. and I can remember during chemo, I had a lot of trouble sleeping, but I think it was mostly due to going so abruptly into menopause. Living in the hottest place on earth, LOL doesn't help. The night sweats were the worst for me. Are you on any hormone therapy? They can interfere with sleep also for the same reason. I was just starting to sleep a little better,and now I will be back on hormone therapy again after my rads are done. The fun just never ends, but I do like your sentiment, it's less tiring to be optimistic, I am a work in progress. I will be out shopping for corn starch and an aloe plant tomorrow. Thanks, Stephanie

                                                                                                             

Sunshineinky

Stephanie did you ever find a cure for the night sweats? Mine are drenching! My other side effects are currently gone so right now I'm feeling really blessed!

3rdtimenow

Sunshineink, unfortunately no cure, I just found whatever nightwear I could in terry cloth, so at least it would absorb and I didn't have to change several times a night, slept with the fan on all night and kept ice water near the bed. No fun, terry is hard to find, but I found some coverup type things in the swim suit department. As they say on my Alzheimers caregiver board, we're all in the same boat and the damn thing leaks. Hope this helps a little.

Brwneyedgirl

it was nice to have 3 days off early in treatment. It is good to hear  that most are getting through without too much of a problem.  I have 12 whole breast and 4 boosts to go. My boss says we are ringing the bell at work when I am done with this.  

Debster

Hello everyone, I will start RADS on Wed. of this coming week. I have had a hard time getting myself mentally where I need to be lately but I have been on here almost everyday reading your posts and just knowing others are going through this as well helps. Thank you all for sharing. I have to have a bone density test Monday and then  biopsy the following Monday to be sure I don't have anything else going on because I had one monthly cycle during chemo and I have not had one in 2 years. I have to say it truly messed with me and my ability to focus and do what I have to. Any ways just wanted to say thanks for sharing and I am ready to start Wed. so I can get this part done. I have 30 to go.... Have a great week everybody!!!

jbokland

debster

Hi five,sister! I have my dry run Wednesday, first treatment onThursday.  You and I will do this together.  

When you find yourself going through hell...keep going!  

Crazywabbit

dedster.  The time will go by faster then you know it. 

My only problem now is the intense itching over my collar bone area.  Tried everything including cutting fresh aloe leaf and scooping out the flesh. I need to ask for a steroid cream this morning, OTC hydrocortisone did not help. 

Rosiesride

hi ladies!  Well we all had a nice 3 day break so hope our bodies are up for the trek to rads!

3rdtime...the simulation is so much longer...treatment is not!  My neck issues are ongoing (c-5 vertebrae) and for me it's turning my head and not having support under neck...so today I fixed a nice basket of goodies for the techs for a happy Monday...and I will ask them about a warm towel under my neck...hahaa ...they are a good team but a little schmoozing may help!! 

I am also 5 weeks PFC And may still be recovering physically from that...all my muscles seem weak and legs, arms are achy...so holding them up for a short time effects me...I think I have been doing too much too fast...exercising and doing a lot of bending down this weekend at the beach looking for treasures after our storm!  I think I will slow down this week and see if my aches subside...6 months laying around turned me to mush!!!

I am doing the aloe, cornstarch and cetaphil  right now but I am going to look for the other creams...miaderm, Elta lite and My Girls creme...I see my RO today ...my dd gets 4 teeth extracted at 11...she is 20 but I am a nervous wreck about it!! I can do this cancer stuff ok but don't ask me to be a nurse to anyone!!  Sheesh...calling my sisters and hubby in for caregiving!! Lol...Rosie 

jbokland

Rosie

Me too. I feel like flubber. I am 4 weeks PFC and just when I think I'm back to normal, I am challenged by a hill or set if stairs that leaves my heart pounding and me huffing and puffing.  The Florida heat is incredible right now, hard to get motivated to get out and walk! 

Sam2U

Although I wouldn't wish the se's on anyone, I am so glad to see that I am not the only one that still feels the effects of chemo even after it's over!!  

Sunshine--did you need a referral to the wound care people?  I have an open sore on my leg that has been there for 7 weeks, the infectious disease people of confirmed no infection but the thing will not heal, it's about the size of a dime and about an eighth of inch deep and I think I need help getting it to heal.

Does anyone have any little dark brown/black spots in the treatment area?  I have several that have popped up since the last treatment and wondering if it is normal?

Crazywabbit

saw the RO today and got a prescription for a steroid cream to use on the collar bone area where it is itching and driving me crazy, I will pick it up in about 30 min.  Since I saw him today it counts as my weekly doc visit, even though I just saw him on Thur last week.  I guess it will be my last one since I finish on Wed and my doc visits are Thurs usually.   No sim. for the boost, he said it is all done on the computer.

7 more to go, no more to the SC area as of today

Rosiesride

sam2u...yes!  I just saw a group of little brown dots on Chest that jut popped up after 9 th rad...guess I miss my doc visit today since I had to cancel as machine is being repaired...will call about that though and hope to see someone tomorrow 

Jbokland...I feel like a Mac truck hit me !  Kind of like the days of chemo when you thought you were good and BAM!!  I am going to lay off my little workouts to see if it's too much strain...so achy all over!!

Good luck girls! Rosie

Sunshineinky

Sam they brought the wound care people to me.  My center is connected to our hospital so they consulted with them.  I'm sure your PCP would give you a recommendation or ask your RO.  

I have splotches, dots, and a variety of other things on my chest Sam! 

Jbok and Rosie I hope you catch the elusive energy monster!! 

mripp

jbok and debster- looks like we'll be about on the same rad cycle so we'll follow and touch base a well as get pointers and info from our summer rad group. I'm having my CT planning sim tomorrow. Seems like this is still a bad dream, but I am staying positive and with my DH and family/friends will get through this and hope it is gone FOREVER!

DeeC

My first RO appointment is July 21.  How soon do you usually start from first appointment?  Anyone else starting around that time?

Dee

mripp

DeeC- here's how my schedule is going

6/3 lumpectomy for DCIS (left) and SNB (3 removed; all negative!!)

6/9 post op check with BS

6/19 met with MO discussed DCIS, oncology report from surgery, treatment plan, follow up over the next year, diet, exercise (I'm on the mediterranean diet and no dairy or very limited)

6/24 met with RO for consult, appmt was 1-1/2 hrs

7/2 had a mammo post op (all good!)

7/8 will have my CT scan and planning session aka simulation; they said about 1 hour appmt

Next will be my start date for rad (probably in the next week, maybe sooner or ???).  Looks like we'll be rad buddies!  We can check in and discuss our progress and symptoms.  ((((Hugs))))

aff

Just got back from the BS. I've had inner arm pain from my armpit down past my elbow. I thought it would resolve so I let it go for about a week. It did not resolve and has gotten worse so I called the BS...cording! Ugh! She wrote a prescription for physical therapy. Hope the pain does not affect my first rads appointment on Thu. I now have the start and, more important, end date set in my head and do not want to delay. 

Crazywabbit

aff, can you feel the cording, thickening  or just pain?  i have tenderness in the same area but only 1/2 way to the elbow. very tender to press the area but I do not feel any fullness or thickening.   I still have good range of motion and no lymphedema, hope that holds post Rads. Hope the PT can help you.

ktlearn

Just reporting on my experience so far...

Today was Day 20 of 25 whole (left) breast radiation. My 25th day will be on Monday, July 14. I will then be given a three-week break (in order to travel out-of-state) and will have 5 days of boost to the lumpectomy spot (above the nipple) from Aug.4 - 8.

My RO was right on with what to expect. I saw nothing the first two weeks. During the third week, my breast area was a little pink. Last week it was more so. I am just now feeling uncomfortable and having a little trouble sleeping at night. (I wake up when I roll onto sensitive areas.) At each treatment, I am receiving a 30 second blast at about 2 o'clock on the clock dial (irradiates the inside right section of the breast, and then the machine moves to about 9 o'clock to do another 30-second blast at my underarm/ left side of the breast. The areas where I am most uncomfortable are under my arm (also where the incision is from my SNB), under the breast, and especially the inside/upper part of the breast. That part stings and kind of itches because the skin is reacting to the radiation because of previous sun exposure over the years. My RO prescribed a steroid cream today for me to apply twice a day to that area.

My doctor had recommended a lotion called Remedy which I use three to four times a day. (I bought two big bottles on Amazon.) Our hospital also has it available in the treatment room to be used after treatment. When I met with my RO last week, she said that we probably were going to need to switch to Aquafor and that she thinks I will peel. (I am fair-skinned.)

What I have been doing at night: I had some pain pills left over from surgery, so two nights ago, I started taking one at bedtime. When I wake up during the night, it has helped to put a cool, damp washcloth across the affected area. I also find that when I lay on my right side, and the inside part of my left breast lies against the right breast, it hurts, so I roll up a soft dry washcloth and insert it between the breasts. I also have a bottle of pure aloe (100% alcohol-free) on the night stand and will lube up with that during the night. I also have a fan blowing on me from the side of the bed. 

All these things seem to help.

I really haven't felt an overwhelming amount of fatigue. I go to bed early but always have.

3rdtimenow

Can I join you ladies, mriff and aff? my first treatment is Tues. the 8th. Stephanie

Crazywabbit

Karen, sounds like you are getting a handle on the SEs.   a 3 week break, unusual but nice to be able to do your trip.

I saw the RO today and got a prescription for triamcinolone steroid cream. I have used it 3 times already today and it finally seems to be calming down the intense itching. Nothing I tried all weekend worked, other then ice but could not stand that for long.

ktlearn

Barbara (Crazywabbit), that's the same prescription I got.

I had the same problem as you over the holiday weekend...which felt VERY long!

I've applied it once so far, but really glad to hear it is working for you.

Crazywabbit

Karen, my RO said the Rx says four times a day but he said to use it as much as needed. Yes it was a LONG weekend of unconfortableness.  Thankfully today was my last RT to the supraclavicular area snd I refused to call the on call doc for itchiness. Just 7 more to go.

aff

crazywabbit - I feel a small "cord" in my armpit. I cannot feel it extend down my arm. My BS told me "it's not bad at all". I beg to differ. My arm is painful to the touch and hurts when I stretch it. It does not bother me at all if I am at rest but with a 12 and 11 year old there is not much rest in the summer. My BS said that it would resolve itself within 10 to 12 weeks without PT so I hope PT will help it resolve faster.

3rdtimenow - jbokland is starting Thursday also so the 4 of us will be on the same schedule. It will be nice to be able to compare notes. Good luck tomorrow. I'll be joining you on Thursday.

rettemich

Barbara and Karen, I know the itching. The tapes on me are starting to drive me crazy. All the Dr.'s are on vacation this week. With the exception of a few, to cover. I met with the NP for another issue. Was telling her about the itching and the spot that was burning where one of the tapes came off along with the skin. She recommended Domeboro solution. it's OTC thought yeah this isn't going to work. Well I ate my words. after the soak and cream, all I can say is AHHHHHH

Those of you that read my post about the the pain I was having, I feel validated. I saw the NP. She was Great!!!! After a quick exam she said that I was defiantly inflamed. She told me to take 2 Motrin 2xday for inflammation and some pain pills so I can sleep.  And she actually wants to see me again next week.

Between the meds and the soaks, I might just make my last two. 

It sounds like those of you that are just beginning, are planning well for your adventure. It does go by fast, really as you get into a routine. Good Luck for those just starting.

About 38 1/2 hours until DONE!! But who's counting.

Rosiesride

aff...I also have chording...docs don't talk much about this!  If I lift my arm, I can sometimes see an actual ligament , like a guitar string you can pluck!,  luckily, I also have good range of motion but I have been raising my arm a lot to help with range of motion....I started pt and she gave me exercises... Real simple quick ones that help with the chording...mine comes and goes...I need to do better with exercises!  Pt will definitely help with that!  Good luck! Rosie

Debster

Hello ladies, Glad to know that there are 4 of us starting this at the same time and can be in each others pockets.

Yay! for those of you who are finishing up.

Hope everyone has a good evening and great day tomorrow!

3rdtimenow

Congrats to all who are almost done, and thanks ladies, we can do this!

lyzzysmom

Rosie, The machine was broken here too! I arrived for my 9:20 but the computer was broken so I went home and then back for a 2:50 afternoon appt. instead. It was 30 miles of driving but I didn't want to miss a day so 9 down 24 to go.

Tomorrow they are going to do another simulation ahead of time for the boosts so I will take an Aleve or something before I go. I am a little confused because they mentioned 3. I thought there would be 5 but I am sure they will figure it out by then. Its funny, they positioned me just slightly differently today and the shoulder was o.k.

When I had dermatitis at the end of March which lead to the discovery of the ILC (Yeah for dermatitis! Kind of..) the doctor gave me a corticosteroid cream that worked well so I think I will take it with me and ask if that is suitable down the road or if they want a different Rx. The Domebro sounds good too.

KT, It sounds similar to what I was told to expect, nothing much until around day 12.

Rettemich, only about 37 now!

DeeC, I had my initial meeting on 6/12 and started on 6/24 but they could have started sooner if I could have managed so I think it varies.

Everybody, have a great day tomorrow!