July 2009 rads group

Regawhatever

I'm in. I have my simulation Wednesday, and I think they are going to start treatment Monday. I started Tamox last Friday. So far, so good. There goes my summer, but at least it feels good to be doing something.

Good luck everyone.

-Tricia

Susantc

Just got home from my first treatment. I was supposed to start last Thursday, but the machine went down so they offered to do my simulation and first treatment at the same appointment today in order to let me stay on my schedule. Other than having to lay for a long time with my arms over my head while the film was analyzed, it was pretty easy. The technician was wonderful. He stayed and talked to me while the rest of the team went and looked at my x-rays. It helped a lot. I visualized a white healing beam entering me during my treatment.

My nurse said my Aloe gel was fine to use. She also gave me Jean's cream but said I could use calendula ointment when I showed her that. I read about it on another thread here on bc.org, and it sounds good. I think I will slather myself more often than she said to (once a day for the first week). My skin is fair and my boobs are small - could be an interesting combination.

Good luck to all of you as your start this phase.

carollynn79

I start Thursday and started using Aloe Vera already, I have been told it is not neccesary but I would rather be pro active, makes me feel like I am anyway!  What kind, brand of Aloe Vera does everyone use, just wondering, I am using Fruit of the Earth 100% gel.

carollynn79

Regawhatever- I too am to start Tamox this week with the radiation it will be nice to compare with someone who is starting both when I am.  It sounds like there are only an handful who do both at the same time.

Good Luck

Carol

hudsonrivergirl

Hi all--I thought I'd join in here--had my simulation today and my first treatment is on Thursday. I joined the June group because I thought I was going to start in June, but had to delay a month. So now I'm ready to go. I got the tattoos today...I thought they would look horrible but they are really not that bad. I'm having 20 treatments--the Canadian 3 week protocol plus 5 boosts. Lucky me, the last treatment falls on my birthday!

Good luck everyone!

D

ibjennifer125

I'll join as I have 4 out of 34 rads behind me. I don't have all the info everyone seems to have on their posts. All I know is I was diagnosed with IBC last October and  after 8 rounds of very tough chemo and a mastectomy of the right breast I am now doing radiation. My surgeon did downgrade my stage from Stage 4 to Stage 3 ( Thank you God ) and the tumor is gone - thanks to chemo. In looking at my pathology report I do see  ER+/PD+/ and HER2. All this has been explained to me as my daughter and husband were my "ears" when we saw the Drs. but I'm still not sure about all of it.

I just know for sure my oncologist and surgeon was jumping for joy the way I responded to treatment

I was a blubbering idiot through much of the first few months. Getting stronger though.

Leah_S

ibjennifer, I was nice and strong through surgery and chemo. Now with radiation I'm turning into a blubbering idiot.

I think we're taking turns.

Leah

LoriRR

Hi Everyone from Minnesota. I would like to join this group too. I met with my Oncologist today to go over my Oncotype score. I had a 19 so I could go either way with chemo and rad or just rad. I teach kindergarten and she said that if "we" chose chemo and rad that she would strongly suggest I take a semester off-due to fatigue and not wanting to around all the germs of a normal kindergarten. She was fine with what ever a chose-and after a long discussion with hubby and Dr. I decided to go for radiation and Arimidex( which I had started in May) My first consult with radiologist is next Monday and I am hoping I can get started ASAP after that. My Onco Dr. also mentioned that it may be possible to participate in a new double dose a day therapy??? I guess you receive radiation in the AM AND PM every day M-F for 3 weeks?? Has any one heard of this or have done it? It would be nice to be done BEFORE school starts mid August. I look forward to talking to all of you! 

hrf

I had my first treatment today. It went smoothly. I was told to use Glaxal cream. ...so one down and 24 to go.

nanabolini

Is anyone here getting IMRT?  And if so, do you know why?  I asked my radiologist today why I'm not getting IMRT and he said "it is more complicated and more expensive." ??? This makes no sense, and now I'm mad at myself for not telling him so.

hrf

What is IMRT?

charmd

Hi Everyone,  Sign me up for the group.  I finished 6 rounds of chemo on May 19th, had Bilat MX on June 19th, with follow-up procedure on June 26th.  Seeing my Rad Onc next Tuesday and will start treatments after that (5x/week - 6 week duration).  I responded well to the chemo and am glad to have the MX behind me.  Eager to get through the rest of this summer and hopefully be done with this before my kids are too far into the next school year.  Best wishes to all.  God bless you and keep you.

Charmaine 

Canine-Treasures-RescueArizona

Hi Nana and and HRT,

I do believe that I am getting IMRT. I know my onc said that he was one of the first doctors to use it when even the university hospitals didn't have it yet. He said that I would not just get this everywhere. So maybe they don't do that type where you are Nana?

Intensity Modulated Radiation Therapy (IMRT) is frequently used to treat prostate, head and neck, and brain tumors, but can be used to treat a variety of other areas. Using computer-controlled accelerators, IMRT will focus a higher radiation dose to the tumor while minimizing radiation exposure to surrounding normal tissues.

Image Guided Radiation Therapy using X-ray Volume Imaging and 4D Adaptive Technology
Image Guided Radiation Therapy (IGRT) provides real-time high quality images to allow monitoring and correction of individual patient positioning. This ensures efficient, accurate treatments and minimizes side effects and radiation to healthy tissue.

I don't know what your cost is Nana but the Center that I go to charges a little over 1K per session and my insurance has an agreement to pay approximately 750 per session.

I don't know that I am getting less SE than anyone else, but we don't know what we don't know. I have heart burn that I didn't have before, fatigue, (but under a lot of stress that could cause that) dizzy sometimes, getting pretty pink under the arm and side and will have treatment 21 out of 33 today  (last 5 in treatment are the boosts). I know that he was going to have to radiate a sliver from lung that he said I wouldn't miss (that sliver of lung will not participate with the rest of my lung when this is done) He said it would miss my heart.

Maybe someone else can come up with more benefits for IMRT that I am not aware of. Being new to this I have limited information.

Take care,

Suzanne

LoriL

Carollynn- I'm using Fruit of The Earth aloe gel, too. It's the only one that I could find that had Aloe as the first ingrediant, no alcohol and no added color. Hope it works! I'm applying it after the rad treatment and after I shower.

Nana-I'm getting "standard" 3D rads- not IMRT. They told me that they use the IMRT more for tumors in the head and abdomen

ibjennifer125

Not having any problems yet but I've only had 5 .....29 to go!

jdeking

First real zap today. It took about an hour, and was painful as I have trouble holding my arm over my head that long. The techs got impatient with me, but they ensure me that it will be much shorter after today.

 Gosh they keep it cold in there! Hard to hold still when your teeth are chattering! lol.

 1 down, 32 to go.

Leah_S

I start tomorrow morning with my first treatment. I am, too put it mildly, not dealing well with this.

My appointment is at 11:00 AM, which is 4:00 AM on the east coast so if you are awake at that time (not too likely, I know!) send some good thoughts for me. Otherwise, do what was requested by Mama Cass - dream a little dream of me.

Leah

ibjennifer125

Leah....you will do fine and you will be in my prayers as well as I'm sure all the other sisters prayers on here.

I'm the one that hasn't looked at my surgical site since my surgery in May. We all have our hurdles and you will get over yours just fine! 

ibjennifer125

Jdeking.... my arms just about killed me in the beginning ( 5 treatments ago ) but it's getting better. I lie there and shiver too. I moved once because my arms just gave out, plus I was still sore from my mastectomy and my tech wasn't real happy. She is about 25, has her perky boobs, and head full of luxurious hair,  so ask me if I care that she got irritated? I know irritated........Last October 30th when they told me I had something called IBC. Now THAT' S irritating!

 5 down and 29 to go.

ibjennifer125

My skin seems to be itchy since I started radiation and not necessarily the where I'm getting the rad. Has anyone else had this?

dkhancock1948

I am in the June rads.  My 11th time is tomorrow.  My tech asks me everytime if I want a blanket. For any of you that are cold, maybe you could ask for one.  I asked today what happens if I sneeze.  She told me not to move my arms, but she would adjust me if I did sneeze.  I think that was in case I sneezed while the radiation was being given.  My sternum is sore and has been since the rads started.  I asked my tech about that today, she said it was probably because of my arms over my head with my neck turning to the left.  Thank goodness for the forms they make so you can put your head and arms in the same place.  All they do then for me is move the sheet that is under me.  I just have to remember not to help.  My shoulders and top of my back have been so tight and sore.  I had a shoulder massage last week for half and hour.  I am going again tomorrow for another half an hour.  Thank goodness it doesn't take long!  As soon as my tech comes back through the door when I am done, she says you can bring your arms down - then she says if you can.  She knows it hurts us, but there is not much that can been down right now.  Just know it will be over soon!  Debbie

survivorsal

Had my first rad today.  I already have left shoulder pain and it was hard to keep my arm up over my head and not move.  I managed though but did need to do a little positive visualization and self-talk.  My nurses said the first day is the hardest because it takes so long (45 minutes).  Don't know if it was the pre-first-time-stress or what, but I am exhausted.  I'm hoping I'll feel better tomorrow when I get to go to work and do this all over again.  Thank heavens for this July rads group.  We can all do it together!

nanabolini

Canine-Trea.  Yes, that's exactly why I wanted the IMRT - more intense rads to the cancer area and less to surrounding tissue. You mention a sliver of lung getting the rad and that is something worries me a lot , although apparently you get it even with IMRT. Wow it is expensive.  Thank you so much for responding.  I'm happy for you that you're getting that IMRT.  Hoping you'll come back tell us if your side effects are different.

jdeking

ibjennifer - right on! My tech was also a young woman (actually probably my age, 34) and I had the horrible thought "what if this was your family member on the table???" I know today should be better since I won't have to be on the table as long. It would help if my place had the forms, we just have to be positioned and hold it, no support or forms available!

I haven't been itchy yet, but I'll see what happens in a few days!

surviorsal - great job on hanging in there for 45 minutes!

Is anyone else working while doing rads? How long are you gone from work for your appt? I had to use an hour of sick time yesterday, and am hoping that was just a one-time thing.

 LoriRR - never heard of getting rads 2x a day, but if it makes treatment end that much sooner, then awesome! Let us know if that is how you are going to do it.

Have a great day all!

Janine

rreynolds1

I'm lucky that my techs are older and very kind.  I had a partial mastectomy so I'm not having issues raising my arms.  I had my 12th treatment this morning and it feels itchy and burns slightly.  I travel with my aloe so it feels OK.  One day at a time, right ladies?

Roseann

Rabbit_fan

I had my 5th rad today.  I haven't checked the board in a while because I've been feeling discouraged that even though the radiologist acts like this is easy, my arm and shoulder have been achy and sore.  I've been feeling very whiny and thought I was the only one who couldn't handle it!  I'm sorry any of us have a hard time with it, but it's nice to know that maybe it's normal not to feel like it's a piece of cake.

My scar is around my nipple even though that's not exactly where my tumor was, and my nipple is very sore already.  This is a drag! 

I'm still working but as hard as this has felt so far, I'm thinking about using vacation time for my last 3 weeks of radiation, then maybe a week sick time to recover.  I have to keep reminding myself that I'm not the only one who works here and somebody else is going to have to step up and be the Girl Scout because I can't do it right now.

MsDebS

I have my sim tomorrow and then start on 7/13.  I have to go to work after the sessions and the nurse was kind enough to move some retired folks to a later time to accommodate me at 7:30 am and then to reschedule when I have chemo every 3 weeks.  I am very apprehensive.  I bought some surgical camisols and some sports bras ( I had a lumpectomy but am still a D cup) I need to wear something under my clothes.  My Dr told me to plan to be topless most of the summer as much as possible.  I am hoping not to burn badly....my neighbor just got done at Fox Chase and had terrible burning and blistering starting with the first week. 

Leah_S

Had the first treatment today. Boy is this going to take long. There is a new machine they are just starting to use, so not only does it still need the kinks ironed out, but also there are a lot of people (me included) whose rads started much later than they would have (I thought I wuld start mid-June) because of the work being done in the department. The past few days people have waited more than an hour, sometimes up to two, for treatment, and they figure it will continue like that for at least another week or two. What fun.

My treatment was over half an hour today - partly because of x-rays they said they have to take first time, partly because machine need fixing IN THE MIDDLE OF MY SESSION!!!!!!!!!!!!!! so the techs covered me with a sheet and let me take my arm down (AAHHHH!!!!) while a machine tech worked his magic.

I had to ask for a sheet to cover me when I started. Now, the way it works is that you don't get into a hospital gown beforehand - there is a curtained-off area in the treatment room where you take off your blouse, bra, etc., then go on the table. I asked for a sheet to cover myself, and the male tech asked why I needed it, pointing out that I had a sheet on the treatment table. DUH! The female tech eventually got it, but that wasn't dumb/thoughtless, that was my Hebrew, which is barely adequate, and her Hebrew (she's from Russia) which isn't much better. Unfortunately, when I asked for something to cover my arms because I was so cold, they didn't have anything. I'm bringing something myself from now on. They kept telling me to lie still, I kept telling them I couldn't control my arms because I was shivering so much. A good time was NOT had by all.

I also met with the rad nurse, who gave me all the usual advice about skin care. One thing that surprised me was that she said not to even use Dove soap. Her instructions were only baby soap (Johnson& Johnson or similar). The rad onc had said it would be OK to use aloe vera gel from the beginning - he said he doesn't know if it would really help with prevention but if I wanted to it was ok. She said not to use anything. Aloe vera for me.

I am NOT looking forward to the rest of this. Hope the road is not so rocky for the rest of you.

Leah

hrf

Leah, during my first treatment on Monday the machine broke down while I was lying there so I had to pick up all my stuff and move to a different machine. They also took the xrays so it took about an hour. The second day the machine was working but apparently none of the xrays came out so they had to do them all over but there was one they couldn't do. So today - for the 3rd session - they finally got the final xray done. I'm  hoping tomorrow will be faster. I was told I could use Dove soap for sensitive skin......they all seem to have different opinions. I was told only Glaxal cream or plain Lubriderm.

nwood450

Hi Everyone ... would like to join you.  I began radiation on July 1st.  5 treatments completed ... 30 to go.  Can't believe I finally made it to this point.  It was a very long winter but chemo and mastectomy are behind me now.  I don't know if anyone else has experienced nausea after radiation.  I spoke with my rads oncology nurse and she totally dismissed it.  said it was "impossible".  I know what I'm feeling and it is nausea and heartburn.  Also ... lost my hair during chemo (A/C) and finished last round on 6/3.  Last week lost my eyebrows and eyelashes - that was a huge loss..   The ups and downs of this are driving my crazy.  Trying to remain positive.  My skin is holding up during thie early stages of rads so that's good!

Nancy