AUGUST 2009 RADS

annadou

 Hi Everyone

Was hoping to see an August thread.I go for simulation on the 3rd and start I hope the next day .

I will be in Athens ,Greece.

Have started smothering my "area" with aloe vera-am very white so heres hoping I dont get burnt

Anna

jancie

Anna - you brought back memories of my traveling through Greece and Turkey back in the 1970's.  Loved both countries so much!

I am also very fair skinned so I am worried about burning. 

ccbaby

Flowerpower...Yes, I finish my chemo with herceptin (TCH) on July 6 and then had my first Herceptin only treatment last Monday. I will continue on with that every 3 weeks until March. Seems like there is so much to do with bc.

Anxiousmama

Hello all,

I had my simulation today and will start on Monday. Those of you who have already had a tx, how long did the first one (they said first one took longer and I forgot to ask how long..) take?  I may not have anyone to watch my 2 kiddos Mon. morning and had planned on them sitting in the waiting room with their Nintendos for the 10 min. I was told the treatments would take. Trying to figure out if I need to start calling around again for someone to watch them if it's going to be more than about 30 mins?  (they are 10 and 7, so not too too young)

Becky613

Anxiousmama:  I have just completed 26 out of 35 treatments.  The first treatment for me was about 30 minutes.  They rechecked alignment and positioning.  They had said the first treatment would take 45 minutes so they were quick I thought.  Good luck. 

drmel

I was told to use X Clair radiation cream right after radiation, and then again at night. It's costly - i paid 75.00 and my insurance covered very little, although after chatting one day when the machine broke, I found others were paying a little less. The nurse also told me that when i'm further along, she has an aloe plant that she uses. I started on July 9 and have completed 16 out of 33 days.

fmakj

Anxiousmama - I went for 1st tx - should have taken no more than 45 minutes, but they wanted me to go for another simulation and I then started the next day which did take 45 minutes.  The original day I was in tx room for 45 mins and then had to go to simulation room for 1 1/2 hours!  Just to be safe and so that you are relaxed, I would try to have someone be with your kids for your first tx.  Tomorrow will be # 3 of 33 for me.  Today's appointment took only 15 minutes, but we did have a little chat prior to tx as my breast was already getting red and hot from yesterday's treatment.  It is no worse yet after today's treatment but was told to get "Glaxal Base" moisturizer (at Costco in Canada) and they showed me the total area being treated so I know where to put the cream.

O3132W

To anyone:     I am 72 years old with some back problems and I find it very hard to extend both of my arms above my head.  How in the world can I get through a simulation if it lasts for such a long time with me being motionless with my arms and back hurting????  My simulation is scheduled for Aug 4 and I am worried about it.  I read in this thread and others that some women have their arms fall aseelp.  No one has told me that it is painful but I worry.    Thanks for helping me get through all that I have already gotten through.  Any comments please!!!!!!!!!

jancie

03132W - I would suggest you take a valium so that you can relax because if you are stressed out then your back might start hurting.  Or if you have any pain meds, go ahead and take a couple before your appointment.

I am planning on taking a valium to calm my anxiety issues for the first treatment.  I will start next Thursday and that is going to be the long appointment as that is when they will do the tattoos, etc.

O3132W

Thanks Jancie, good suggestions.    For the last week I have been trying to do some excercises by reaching up with my arms to get ready for the simulation but have only made those muscles sore.  I have some Celebrex which I am now taking to reduce my current soreness and swelling.  . Other than that I have tylenol 3 that they gave me for post surgery.  I could take that.   Thanks again.

charmd

Hi Everyone:

I'd like to join this thread even though I'm a couple of treatments into my series.  I was diagnosed in Jan.  Completed 6 rounds of chemo in May, bilat mx in June.  I have decided to not have reconstruction.  I had a second opinion with a PS, and it just seems to not be the right option for me.  My cancer included skin involvement and I had a problem with necrosis after my bilat, so the docs do not think that tissue expanders are possible on the cancer side. My simulation was a couple of weeks ago, and I started rads this past Tuesday.  I have 35 sessions.  So far, so good.  Each session has been quick - 10 -15 mins.  My techs are really sweet and very efficient.  The simulation took about an hour, and they made a mold that I lie in each time I go in now.  I got the tattoos,  and honestly they are so tiny that unless I told someone what they were, you would think they were a freckle.  My techs said to use a good lotion like Lubiderm day and night to keep the skin moist. 

I wish you each the best and look forward to getting to know each other as we take this journey together.

God bless you.

Charmaine 

fmakj

The first simulation I had took only about 1/2 hour.. The problem, was that I was not expecting to have the simulation that day (they squeezed me in due to living 1 hour away).  I was told that in the first simulation I must not have let myself relax so needed another simulation.  It took 1 1/2 hours as they had to recalculate using the permanent tatoos.  My advice - take a deep cleansing breath as soon as you are on the table, make sure you are firmly pressing against the table and let your muscles turn to mush (Especially every time they move you - just relax)!  If you already have pain, make sure you take your pain medication prior to the appointment. 

Titan

fmakj:  No chemo is definitely NOT fun...but it is/was doable..As far as you not having to have it..that is good news!  Maybe it was my tumor size..I was over 1 cm but less than 2 cm. no node involvement either, good margins but they still recommended chemo...said it was an "insurance" policy that would bring my reoccurence rate down to 12% for getting breast cancer.

Reading about all of you getting your tats and preparing for radiation makes me very jealous.  I have one more chemo then rads in a couple of weeks..I am so READY for this. 

Oh well..I'll keep myself busy hearing your experiences and watching my hair grow!

fmakj

Well # 3 down only 30 more to go YIPPEE!  Since Monday is a holiday here in Ontario, I do not have to go back until Tuesday.  So far radiation tx is not bad - 10 mins usually - my only problem is that I live 1 hour away so it sort of takes 2 1/2 hours in all!  But the positive side is that I don't have to follow any snow plows and worry about drifting snow!! LOL  Take care all and have a great weekend!

jancie

Titan - I have never been one to look into a mirror unless I was apply make up which was maybe at the most 10 times a year.  I can't stop looking in a mirror now as I watch my hair grow!  At least 2-3 times a day I check out my hair!

I can't believe how much hair I have - just wish it was longer than 1/2".  I take 10,000 mcg of Biotin per day and I am using Mane and Tail shampoo.  My husband keeps telling me that he is shocked at how fast my hair is growing.  Well dear hubby.....not fast enough for me.

I haven't met with my radiologist since the clinic I went to when I was first diagnosed.  Some gals do 5 weeks, others 6 weeks.  What determines the regimen of radiation?

fmakj - Oh my gosh - what a long drive!!  I have to deal with the snow also in winter so I am glad that I am having this treatment now instead of in November/December. 

Lizzy90

hi Ladies,

 My simulation appointment is on tuesday aug. 4th and will talk more to the radiologist.

I was told I will be getting rads 5 weeks and the 6th week boosts in prone position with my breast hanging under/over an opening of the table and they will do whole breast radiation. I am not 100% decided and will have 2nd opinion on monday morning.( i couldnt get in to see this specific doctor earlier)

I am treated at Memorial Sloane in NYC and I am 65 years old and otherwise healthy person working out 5 days a week.

I was seriously thinking to avoid radiation especially after the oncotype test that revealed 9% recurrence in 10 years..but then again this devil might haunt me 1-2 years later again...it is such a gamble either way..

Like to know from others about side effects years later...rads side effects??

 thanks to all who give their time and their heart and soul to educate others and truly help lots of us over some rough time...we all need a shoulder occasionally...even if we strong and go all the way.

best health to all

lizzy

elimar86861

lizzy90 - Hanging down makes sense, and seems like it could avoid getting your chest wall and lung radiated, if lump wasn't near the chest anyway.  I'll see if my cancer  center will treat in this position.  Put more posts on if you begin this treatment.

I'm undecided on all my post-surgery options.  I began a thread about having a lumpectomy, skipping radiation, then doing hormone therapy (specifically Tamox.) but so far no responses from anyone doing exactly that.  I'm really wondering!

Alyad

I just got a call yesterday- my first treatment is monday. I thought I'd get stuck with some awkward time in the middle of the day , but I'm going in after work for the first week. The tomotherapy machine seems to be scheduled tightly. Both times I have been there was a sign saying it was running xx minutes behind. I wonder how behind it might be at the end of the day!

I have a few samples of My Girls radiation creme- ccbaby- do you still have the link to request those? I see what they reccomend I use when I go in this week. I am very fair skinned.

ccbaby

yes Dayla....the email address to request samples is     theresa@radiationcream.com

Good luck on Monday! Tell us all about it too.

SueInOhio

  So glad to have found this group. Going to radiation oncologist tomorrow for consult...and they have me scheduled for simulation right after that.

  My BC diagnosis was June 29. Lumpectomy on July 2. Grade 1. 1 small spot in one sentinal node resulted in axillary disection with nothing found. Stage 2. Oncotype DX :18

Decision was made that chemo would not be that beneficial. (YAY!!!)

Other than a very sore under arm and some weepy moments, I am very lucky.

So glad to have read here what I can expect for appt tomorrow . You all are the best! It will be wonderful to have some friends (who understand) on this radiation ride..

Hugs to all,

Sue

fmakj

Welcome to group Sue.  I too am not having chemo and so far the rads are not bad only #3 of 33 done though!  A little tired but take naps when you can.  The whole process is quite an emotional ride, but reading others stories does help and you know that you are not alone in this!! Good luck tomorrow!

charmd

Sue,

 Good luck at your apt. today and Godspeed in your recovery.

Charmaine 

annadou

Hi Everyone

Simulation today and something else tomorow then the real thing on Wed. It was hard to stay with my arm above my head for so long -someone suggested painkillers before-a good idea.

Was told after the20th things would get difficult -just how I didnt ask -probably going to get burnt.

My hair is still falling out  (20 days out of chemo so i suppose its early yet )

Nails are disgusting-thats going to take a long time.

Good evening to you all

Anna

Anxiousmama

Well, I was supposed to start today but did not.  They had to redo my simulation b/c when the dr. came to look at the machine my other breast was getting in the way of the rays, so they moved me around and elevated me to prevent that. 

I am feeling very frustrated with the dr.office, so wish me luck tomorrow. In addition to the above issue, they told me one time for the appointment but marked me down for a different time. I was told  9:30 and they wrote it on a card and gave it to me, but when I got there, the receptionist *insisted* that I was wrong and the appointment wasn't until 11:30 even when I showed her the card. She wouldn't let me go back until I burst into tears (b/c I had an appointment for my son elsewhere at 11:30 today) and people in the waiting room started watching what was happening she took me back to a room and I went out and found the dr's nurse to sort it out. I still don't know exactly why they changed the appointment time and didn't tell me, but they went ahead and saw me and redid the simulation. Now I just hope they told me the right time for tomorrow. <sigh>  I really am dreading dealing with this hateful woman for the next 7 weeks!

Sue and fmakj:  I did not have chemo either. They said it would not be beneficial in my case - my numbers were almost identical to Sue's. My tumor was 2.6 cm., but there was no node involvement, oncotype dx score was also 18.

flowerpower

Just wanted to stop by & say hello to all & welcome new ladies! I did #4 tx today & I have to say it does get easier once you get the routine down.

Anna~  I know what you mean about your nails. Mine are still splitting, peeling, & very thin. I finished chemo July 1st, but am still on Herceptin (every 3 wks) & I think that is why mine continue to be bad. My hair is starting to grow back, but I am loosing my eyebrows & lashes again for the second time!!! SO FRUSTRATING!!!

Good luck everyone with your simulation & start of rads!

Kristen

flowerpower

Sorry you had to deal with this today Anxiousmama. I don't understand how these people can get away with treating others that way! I have a receptionist that is very rude where I go too.  Don't they understand that we are going through enough w/o them treating us like that?  I just don't get how they can even keep their jobs! If she treats you any different tomorrow,  I would ask to speak to her boss.  This is just unacceptable treatment!!!

Wishing you a better day tomorrow,

((((HUGS))))

Kristen

O3132W

So sorry anxiousmomma that you had such a terrible experience.  I know how nervous you had to be without the added inefficient office staff member with an attitute.    Most physicians have an office manager which you might approach first.  After you get home, call back in and ask to speak to the office manager.  If there is no office manager then it is time to have a very private talk with the rad. onc. (THE BOSS)    This is his/her office and he/she needs to know if his/her staff is satisfying his/her patients.  My guess is that he/she will be grateful for you for trusting him/her to correct the problems of the staff.    I am the type of patient that will speak out, if not for me, for the hundreds of patients who find it, for thousands of reasons, impossible to speak out.  We need to help each other through this mire of insurance companies, labs, consultants, surgeons, hospitals etc, etc, etc.  This interaction can be overwhelming to people who are new to the medical world.. On its best day this whole thing is confusing to the layman who is unfamiliar with how to navigate.  Good luck    Cathey from Indiana

Blake1960

Hi ladies.... I am new to this group and glad to have found it! I had my simulation last week Wed. and then found out that my insurance company denied the IMRT treatment that the Dr. wants for me. They view it as exploratory. ? It is now being appealed. We'll see what happens. I was supposed to start treatment today and we have now postponed it until Wed. Hopefully we hear something by then. If it is denied, I can appeal again or just have the 3D treatent. What kind of treatment is everyone getting?

Kathleen

charmd

Welcome to the new ladies.  

Anna sorry to hear about your bad day at the doc office.  Hope next time is better, and I concur about talking with the office manager or head doc.  As for dealing with that woman, just kill her with kindness.  If she has a sliver of heart and compassion, it will only make her feel worse.  She may have felt like total crap about what happened and if you are kind to her it may give her a chance to make amends.  Or, she may just be a mean person, and mean people suck! and the head doc needs to know about it.

Hugs to all.

Charmaine 

SueInOhio

Hi all!

anxiousmama....So very sorry about your bad office experience. I agree with the others in that you should tell someone if it happens again. Even if she was having a rotten day...she should not have taken it out on you. I agree with Charmaine on the "kindness" tactic. I had an experience like that many years ago...I showed up the next time with one of those inexpensive potted flowers you can get at the grocery store....plopped it down on her desk...smiled...and sincerely said (NOT sarcastically!!) "Hope this makes your day brighter". I'm not even sure she remembered how rotten she was before...but she was always nice to me after receiving the dumb flowerpot! 

And on a funny note...I smiled when you said your other breast got in the way. I had simulation today...and I was concerned about mine being saggy/droopy and not being in the same position when I go for the radiation treatments! There is no way my other 57 year old breast will get in the way!

flowerpower:So glad to hear it gets easier at #4. I start on Thursday with re-check, then #1 on Friday. I do so want this over with! I think you and fmakj are on the same schedule!

anna:I also read where someone said to take a painkiller before the simulation...like you, I wish I had done so. It does not matter what meds you are taking when you do the simulation. A mild painkiller would have helped me to relax. quick note: There wasn't anything painful (except those quick tattoo "bites"). It is just uncomfortable being still on that hard board for so long.

Hugs to all,

Sue