November 2011 Rads

Hi everyone,

I had my mapping/simulation on October 20th and started rads on October 25th. If I keep to the schedule, I calculate that my last treatment will be December 9th. So I'm joining the November group. Just sorry it took me until now to find you. I met with a nurse after my first treatment and was given very specific instructions: Aquaphor (or the store brand), Xclair or Biafine only three times a day but not within 4 hours of treatment; a cotton bra with no underwire and somewhat loose (they recommended Grenier and a store where I could buy them); no antioxidants, no soy products; Tom's of Maine deodorant or cornstarch; Dove for sensitive skin. The nurse meets with me every Monday and the RO every Friday. Treatments are on time and I'm usually out within 20 minutes of arriving. I feel very well taken care of! My biggest complaint at the moment (today is my 13th treatment) is nipple soreness. I also started Tamoxifen two weeks ago, but that's a different thread. I've got 25 people coming for a pre-Thanksgiving Thanksgiving on November 20th, so I hope the fatigue doesn't set in too hard!

We can do this! 

Yes I agree, it's frustrating not to have one set of advice everyone should follow. I think you're right that we all experience it differently depending on our bodies, our specific cancer and the way they set up the radiation. 

A couple of you are talking about fatigue - I'll share my experience since I had a lot of questions about that when I first started rads. My RO said that I should plan to do anything I would normally do but to NOT do anything above and beyond my normal activities. I found that I started feeling more tired than normal at about week 2 (I'm having #22 of 33 today). Not fatigued, exactly, but definitely not at my mental or physical best. So I am doing all the work that's expected of me at the office, but I am not taking on any additional projects. I'm also doing my best to stay focused on my work and not get too involved in other people's work or whatever office drama is going on. At home, I am getting more lazy and letting my kids watch TV more at night, and my cooking is often just something from the freezer. 

The other advice I had from my RO is to have no guilt about working a halfday or taking a full day off if I needed it. He said he'd be happy to write a letter to my boss if I wanted him to. So far it hasn't gotten to that point but it's nice to have that option in case I need it.  

Hi all,

 Glad to see this thread.  I finished chemo last month.  Four rounds of A/C and 12 of  Taxol.  I'm scheduled to start radiation treatments next Wednesdays.  I go for my markings and simulation tomorrow.  It's great to see all of your advice.  I'm interested if anyone else was told not to drink green tea as I saw posted by someone (can't remember who now )  I drink at least 3 cups of this a day.  I'm planning on asking my RO but wondered what you all experienced.  

Since I'm still dealing with fatigue from chemo I'm worried about adding the fatigue from radiation.  My RO nurse told me that exercise helps a lot with this.  I'm having a hard time getting motivated since I haven't really done anything other than take my dog for a short walk since my mx in April.  It is inspiring to listen to so many of you who are running and preparing for marathons.  Hopefully, it will help me to get back to exercising too. 

Lots of prayers for each of you to heal quickly and get back to your normal life.

Good evening all,

Today I had the surgery to implant the balloons and tubes for the Brachytherapy.  All went well, 

Now tomorrow the next step, see the RO again and he will check to be sure the paramaters are all correct, and  the "hot shot" (my term) radiation will start Monday morning with 2 treatements a day 6 hours apart for 5 days.  Then the RO will deflate the balloon (it is filled with saline solution) and remove it and I am to see the surgeon again the 22nd.  

PET scan was clean..... still waiting for the OconoT test results...

Vicks

Hi November ladies,

I have been following the October Rads and got lots of help over there....but my appointments were so far apart that I won't be starting rads for another week.
Hi to Natters, Lilylady, and Dawmson from the other threads.  And I look forward to getting to know the Nov. group.
I had my planning session today.  I was prepared for the worst since I am so claustrophobic and have bad allergies and poor air intake at times.  I developed a med combo to get me in shape and it worked.  So, all I needed today was a lot of Xanax to help me be still.
Natters, it was your post that made me just go ahead and bring my iPod shuffle. I taped up the cords and clipped it on my hair and showed them that it was not a problem - they tried to convince me to listen to their music but I got to keep my iPod on the whole time - I left one ear free to listen to their instructions.
Planning wasn't terrible - it was difficult.  I am prone, which I am so happy about.  I had to grip straight ahead with one arm and keep the other at my side.  I was slightly rotated on my left ribs so my lungs weren't so compressed.  I, too, had to wait for the R.O. to approve and was not allowed to move during that time. Grrrr.  I know I will have several more long sessions, but I hope I can cut out the xanax so I can self-drive.  It's 31 miles from my house one way, and 13 miles from my job so it will be time consuming.  I do not have my schedule yet.
I am looking forward to this week of no appointments and less stress while my computer program is being prepared.  I am on Arimidex but may stop for rads....not sure...nobody seems to care.  Least of all my M.O. who has spoken to me only once since I first saw her.
It's a late night - I slept all afternoon after my appointment.  Insomnia is my specialty.
Best wishes to all,
Joan811

Mandala...I think that the most common comment we get from the radiation staff is that whatever symptom you are having is normal but doesn't usually happen that early. I know when I told them I was seeing redness and small blisters with itching after my third treatment, those were the exact same words they used. I find that a lot of the symptoms that I see shortly after radiation are better the next morning. Swelling included.

Hope the rest of your treatment goes without incident!

Greetings from Miami Beach - I am really glad I get a 3-day weekend because my breast and especially my nipple were killing me yesterday. I was a lame-o and ate crappy room service food last night, just so I could take my bra off and give my skin a break. It was hard to sleep last night, too, because I like to sleep on my stomach. I have only done 8/30 tx. 

Mandalala, my radiated breast is very swollen. It was smaller than my healthy breast before BC and lumpectomy, so it was hard for the rads people to see, but it now matches or even surpasses the healthy breast. And it started happening earlier for me, too, after just a few tx. I think that there is just a lot of variation in SEs. I had a feeling I might have skin problems because I tend to blister and chafe easily.

Joan - congratulations!!! You got through it! I am so proud of you, and so happy that you were inspired to bring your ipod. I am thinking you'll be able to use it for all your tx from here on out, now that they know it won't interfere. And there should only be one longer appt per week, where they take the Xrays. That plus maybe another longer appt where you aren't laying still longer, but you have to stick around and see the nurse and RO. Now that I know that I will spend more time there 2 days a week, I am hoping I will be less bummed about it. i am jealous that you are prone and glad you made a decision about the longer tx that you are comforable with. Plus, we'll get to keep you here longer on our rads journey with us Hope you had a beautiful Veteran's Day with your DH. 

Hi everyone --

Posted the below in my August chemo forum, but wanted to post here as well. Hope everyone has a great weekend!

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Hi Everyone!

I've had 8 RADS treatments already -- only 22 more to go!! I only started last Tuesday and last Friday, they had to cancel all appointments as they were doing a machine overhall.

Someone wondered  about the head turning -- I know for me, it's to make sure the airway is clear and out of the way. For one of my zaps, the radiation machine is very close to the left side of my face as it comes in on an angle to zap the breast. One of my tattoos is near the midline chest area and the airway has to be clear. Everyday, after I get in on that freaking hard-ass table, I have to clasp my hands over my head and hold two stationary rods and I lift my chin all the way up and turn drastically to the left.  

I have zaps on the left, right and middle of the breast -- I'm being radiated also in the lymph area and clavical area.  Doesn't take long at all, but too hold that positon during the simulations and films was unbearable (about an hour!).  

My drive is 50mins (without traffic) and I can say it's already exhausting. I also have pangs, twinges and electric-like pain in my breast at times that lasts a few short seconds.

I'm using Keri Sensitive Skin Lotion (the center gave me this) and Aquafor.  Was told to wash with Dove Senistive Skin body wash and use Deodorant without any aluminum (ie: Toms of Maine or Trader Joe's brand or something natural from Whole Foods).

I will meet with my RO every Monday after treatment, and did see him for the first time this week. I get a full BP, and Temperature Check as well as a physical to look over the breast. 

I hope everyone is doing good! Can't wait for this to be all over with! 

Natters,
So jealous - you got away!  Thanks for the cheers - you heard my whining in "Oct" !  Well, I'll have to work with the new techs in the rads area about the iPod.  It should work - I can even hide it  since I have my hair (no chemo).  I remember after lumpectomy my left breast was a huge water boob.  It took 5 weeks to subside and is about normal now.  It could swell again; but I am C+ so it doesn't usually look obvious. 
I found the softest long cami at Kohls and went back to get 2 more - with $20 gift cards and the 20% off deal, they were free.  I get out of the bra as soon as I get home from work each day; and if I wear layers to work, which is easy in winter, I can wear camis.
Chrys23, that is a tough position for you.  I guess you are on your back, reaching up behind you?    I had sim and was prone; left arm grabbing the post in front, head on table, turned to side, and right arm lying at my right side.   It was hard enough hanging on for an hour that way.  I can't imagine what you had to endure on the long sessions. My breast of interest is below the table so I didn't see what they did to it and I hope I don't see the machine.  I will close my eyes no matter what.   I am sure this could all be done in a comfy lounge chair with a flat screen TV and a Camelpak for martinis.   
But for now, I guess we shouldn't be saying "hang in there" on this thread! 
Good week end to all,
Joan
PS -  DH and I did take Vets day off and went hiking in 30 mph wind on a bluff overlooking the ocean with crazy surfers in the cold water.  I sucked in every precious moment of fresh air, sunshine and freedom. BC changes my outlook.

Need to clarify that I did not get a mild case of the flu, but had a normal body response to the shots. (sore, achy, headache, fever.) It is not a live virus that is in the vaccines so you do not get the illness itself, just may experience some reactions as your immune system is responding to the vaccine. It feels like you have a mild case of the flu, but it is not actually the flu. Don't want to mislead anyone into thinking that if they get the shot they will get the illness itself. Here's a good link with more info on flu vaccines. http://www.cdc.gov/flu/protect/keyfacts.htm  

Jennifer, That is the first I've heard of anyone taking Arimidex during rads. Thanks for explaining.  I am not having any adverse side effects right now so I'd like to stay on.  I was told by 3 drs. that I would stop it during rads.  I will ask them about the benefits.  I got such a late start on treatment that I don't want to stop.  I think I don't have side effects right now because of steroids for allergies.
Speaking of flu shot - I wish I had done it - I still have a week.  But today I came down with a scratchy throat and worse sinuses. I'm not sure about getting the shot while I am already feeling ill.   One day at a time - hope you feel better by your next appointment.
Natters - I never thought about flying with all the Rx bottles I now carry in my bag.  It's crazy - I've never been a sick person or a pill person.  But it is a good tip to carry the original container or photocopies of the original Rx. 
So glad it is the week end!
Joan

I have 7 treatments left, which I am thankful for.  But today and yesterday have been bad days for for me.  I have been depressed, and in bed alot.  I have to make a decision about tamoxifen.  My husband doesn't want me to take it.  But I would like to be around to see my son be married and have kids!  Gee, cancer does suck.

Lilylady, I know what you mean....I haven't gotten my call back for my practice run.  I did the math, and it is going to be after New Years for me to finish.  Every year I go to DC the day after Christmas for my 2 grandsons' birthdays and our Christmas celebration with my daughter.  By the time I get there, they will be back to school and work; and who knows how I'll feel....but I look at it this way - this is a one time deal for me to finish the rads and then I never want to see BC or my R.O. again.
Lily, you've been through so much.  I hope you can find the strength and peace of mind to get through this ordeal of rads.  I'll be thinking of you as I'll be on a schedule like yours.  At least we get Thanksgiving off. Christmas is a Sunday though.  Anyway, we'll be done soon after.
Suzanne - yes, ca sux.  We who are ER+ have this option to take the oral meds.  And it is an important decision.  I'm 62 and I feel like I may never really know how I would have been w/o the Arimidex (which I started 5 weeks ago).  I am grateful that there is a treatment, but it is stressful.
Hugs for you!

Joan

Jpan811 I know what you mean about the oral meds. I am starting on aromasin and I'm 65. I just want to give it the best shot as long as my body will tolerate the meds. Since they are taking two days off for Thanksgiving and Friday and Monday off for Christmeas I won't be finished until the end of December which puts a crimp in holiday plans.

huh, Mandalala. I always leave my bag with my iPad and iPhone in the room with me when I go in for rads, and they have never warned me - maybe it's far enough away from the machine? it IS a big room, where I go for rads. but I do worry about how close that machine is to my head, not to mention my heart, lungs and some of my favorite (most useful) muscles.

paula - how are you feeling today? Better, I hope! Will they let you start rads?

I start my first 5-day week today. I'm still emotionally wobbly - got teary as I got off the plane and walked back into my Normal Life- the one where I must go to the hospital every day to get my boob burned at least I still have a boob, right? I am going to try and think more positively. After tomorrow, I will be 1/3 done and that is a positive thing for me. I was lazy and did laundry before work, rather than a workout, but tomorrow morning I am going to push myself back into the game.

Nat