September 2010 Rads

Yes shygirl, thank goodness treatment is not 7 days a week. I asked my rad. oncologist if 4 days a week of treatment would work as well as 5, in the interest of saving our skin. He said that had been studied, but that getting treatment done in a shorter period, rather than the longer period 4 days a week would require, did a better job. He said that treating patients 7 days a week had been studied and patients hated it. Wonder how long it took them to figure that out?? He was very good natured about me questioning the protocol. I figured it never hurts to ask! 

I'm trying to remember where I put the small pillow I used to protect my chest from the seatbelt when I came home from BMX surgery and for the first two weeks after. As radiation treatments continue, my seatbelt is beginning to annoy me. 

Marie2:  How interesting your post on ACV.  Do you happen to remember the site where you found the information?  I would like to show it to my radonc or the nurses.   

So far I've been using Aquaphor with success but I'm only 7 days in tx.  I slather it on in the dressing room right after tx.  l also found that washcloths irritate too much so I bought some soft flannel fabric (as close to white as possible) and cut that into squares for washing and patting dry the area.  I found the tank tops with the skinny straps the most comfortable.  Sometimes I let down the strap on the affected side for air!  Soft t-shirts (over sized) cut and hemmed down the front over the tank if you choose to cover up once in a while.  The tanks are also comfy for sleeping.  No, no bras during radiation.  If I have to go anywhere to be 'seen' I wear a cotton shirt over top of the tank, sometimes tie at the waist and that makes it puffy.  LMX here.  Cotton, especially organic, has become the fabric of choice here.

Welcome to the Sept rads board, wishing you all the best on this journey.

I officially started radiation on Tuesday so today will be day 3. My doctor prescribed xclair creme to be applied 3x/day during radiation to prevent irritation. I can even wear it before rad. Onc Rad says it is the only topical solution that can be applied to my skin before rad. So far no irritation but I'm sure it is too early. One downside is that insurance does not cover this cream and it is $70 tube. Regarding bras-I got a prescription and complete insurance reimbursement for post surgical/rad bras.  You may want to ask you insurance company if you are covered. I have 2 very soft cotton front opening bras. Cannot recall the brand name. They may not be the prettiest undergarment on the market but they are sure comfortable and not to mention Free.

I'm in the middle of my training for the 3-day walk in November and very concerned about how much I should actually be walking while going thru rad.  I've managed maintain a decent training schedule during chemo and surgery but now the recommended training miles are getting pretty intense.  Last week I walked over 40 miles. I feel ok but I fear that the cumulative effect of rad and walking may take its toll.  The only advice from the rad/onc is do as much as you are able and be prepared that you maynot be able to do the walk.   Has anyone else experienced fatigue from rad?

Hi all..I'm back again.  I had to go to the ER a few days ago for severe pain which I thought was an appendicitis but after spending almost 24 hours there, they sent me home with some more bad news.  In doing the CT scan, my pancreas is showing a hypodense spot which I gather from the ER doctor, can only be one thing.  I have to have some tests done in a couple of weeks.

I was supposed to start radiation last Friday but haven't heard from them to do the simulation.  I'm nervous because of my left breast being affected, they are saying that a portion of the lung will be hit by radiation.  He said that because of this, that my treatment plan will take a bit longer.

I still have NO feeling under my arm from the SNB and part of my arm, shoulder and side.  I still have pinkish hot spots around the nipple as well.  They were saying mild swelling but that everything looks okay.  I'm just so scared to start this radiation because I'm still not fully healed from my surgery which will be 6 weeks out tomorrow.

In reading the threads, I see where everyone says about not being able to wear deodorant.  What is hard for me is not being able to shave under my arm!!  To me that is more gross than to have to lift my arm with a pitful of hair!

Has anyone tried Wen tea tree?  A woman who I spoke to getting treatment said that she used this on her hair, all natural, and used the spray on her breast and never had one problem through radiation.  I bought it so going to try it!   

JanetfromPgh - be careful about what you're putting on your skin....ask the Rad Techs or Rad Onc first.  My Rad oncologist told me nothing else on my skin except what he told me to use (Glaxol  Base in my case) since you can become allergic to something and the radiation heightens the skin's response and you might get into trouble using something not approved.  I even asked about Aloe from my plant and he said "no".

jsmiley60:  I'm just one day ahead of you and I got my tattoos with my CT setup.  They are so very tiny, only 3, that I even have to look for them.  Only felt one because the other two were in areas that were numb at the time from surgery.  It's no big deal, faster that an insect sting and doesn't hurt after either.  I would be more comfortable with tattoos from a treatment standpoint. 

nkrun:  No fatigue yet but then it's still early for me, day 8.  That comes closer to the end, after 3 wks or so I'm hear.

JanetfromPgh:  Been wondering about you.  I'm the one only a short distance from you in Greensburg, surgery at Magee.  So sorry you're facing difficulty.  What I was told about rads over the left side regarding the heart and lung, I was told that it happens only in .05% of patients so it's not a big worry.  That's why they come in at angles, to avoid the heart and lung.  That's why all the mapping is done. As far as the lungs are concerned they said only that if you have a chest xray be sure to tell them that you've had radiation. They will see some changes, not harmful ones. Sending good wishes your way.............I know how hard it is to be delayed in getting on with this business.  I just got back to rads after 4 txs, a 2 wk break.   

I've just began RAD treatment this week and I'm curious to hear if anyone has not had to have the additional 7 boosters at the end of their 6 week RAD treatment cycle or choose to forgo the boosters?  If so, what were your deciding factors?  I asked my rad/onc about the boosters and he said if I were his family member he would recommend the boosters but it was up to me.  I was told the boosters will have a great impact on the cosmetic outcome of my breast that had the lumpectomy.

 I'm going to a highly reputable university for treatment and I don't know if it's me or what.....but sometimes I feel like the doctors and staff don't seem to know who's on first or that they are not that engaged in a 1 on 1 basis with their patients.  Sometimes it seems as if they are just going through the motions.  I am used to a more engaging relationship with my GP; this breed seems to be totally different and not so connected to their patients.

Thanks, all!

DCIS Stage 0 - Grade 2-3 Comedo Type non-invasive no node involvement

tats for me. 5 in total 2 on each side and one in the center of my chest.   Eventhough it was like a quick insect bite,  they were quite painful.

Boca and Julia: Thank you! I'll have to check those out. Boca, I have 4 shots total. Some are shorter than others, but I've come to see the pattern...Long, short, short, really long. 

Sespebadger: I totally agree. Chemo definitely sucked for me, but I at least knew what was going to happen. Not knowing how bad the rads are going to end up being is much worse, I think. I am also starting to be bothered by my seatbelt as well. This woman my aunt knows sewed me 2 little pillows in the shape of hearts for after my surgery, which I also seem to have misplaced. Thank you, chemo brain.

Dutchgirl: During chemo I had a super sensitive nose...but I had never heard of "chemostench." After surgery when I couldn't shave or even lift my arm, or shower because of the drains (10 days was TERRIBLE!!!) I smelled SO BAD! I swear. And now that I can't use my usual deodorant, I'm feeling stinky again...

Jsmiley: I have a total of 6 tattoos, all very small and blue as well. A couple of them can be seen if I wear a low shirt, and I have one up by my collarbone. I didn't have much of a problem with them at all, I actually expected them to hurt much worse than they did. They really do look like freckles.

I had my surgery and chemo through Faulkner Hospital and Dana-Farber in Boston, MA...and they were all so great, I feel like I was spoiled with how much attention and care I got there. I live about an hour away, so doing radiation there was not possible for me, so I have to go to the local hospital (which still takes 30 mins to get to with the traffic). While I feel that the techs and docs are nice...I don't feel like they know what they're doing as well as the other facilities. Some of the techs take more of their time than others...sometimes they ask my birthday and sometimes they don't. I don't like the inconsistency. 

12 down, 23 to go! Time to go slather on the Aquaphor. Only one more day of the week left ladies!!  

Hi All,

Day two of rads is in the books. Wed I thought I was having a simulation, but they were ready to go. They took a bunch of "films" which the Rad Onc checked, then they proceeded with the "therapy". Today they did two more films and then the therapy. All took about 20 minutes from start to finish. I'm getting the IMRT and I like watching the things that look like comb teeth moving around between each zap. It's very interesting. I was told to use 100% aloe or Aquaphor. CVS didn't have the good aloe. They did have their own version of Aquaphor, cheaper, with the same ingredients which seems to be mostly petrolatum. I also got their 4 for $10 cheap T-shirts to wear at night after I put on the Aquaphor since it is so greasy. I'm not too worried about no deodorant since chemo took my pit hair. One good benefit I guess, I haven't shaved in months or really been smelly for awhile. At least I don't so! :P

I'm scheduled for 28 treatments and then a "re-evaluation". Since it's my chest wall, they lay a "bolus" on my chest which simulates the density of skin, I was told, which keeps the radiation shallower so it will not penetrate my lungs. It is sort of like a heavy leather-like square about the size of a washcloth. Is anyone else getting this?

MelBel-Texas has a bit of a wait for fall still haha!  Still in mid 90s with humidity.  I am ready to quit cranking down my air at night!  I am jealous....always wanted to go to MA, especially in the fall, but haven't made it yet.  

hi bubbalu..I don't know if I should put off the rads if I do have a pancreatic tumor??  I'm so confused and just can't add one equation into this mix.  I'm ready for the bridge now.  At least there is the fall season of tv, which I have never watched so much of till this past summer. 

Shygal..we see the same radiologist so I assumed that she had it approved it by him.  She said that he told her to use baby shampoo but that WEN is all natural and safer than baby shampoo.  The spritz is a moisture spray.

I have seen a lot of comments about soy.  My oncologist says that it is okay to take some soy which will help with hot flashes???  I started taking an herb called Breast Health when I was diagnosed which has soy in it.  I'm not taking it or anything else during radiation but he said that I could take it with tamoxofin to help with side effects and will start taking IP-6 & Inositol along with tamoxofin.  Studies show that the two work synergistically. 

JanetfromPgh: You have some time to play with before rads, get the tests then make the decision.  I know they like to do rads ASAP but I had my surgery 7/8 and didn't start rads until 8/23, then I only got 4 in before the reaction when I had to take 2 weeks off.  I did ask after the reaction if I could delay for 3 months to let the chemo clear out and he said no.  They will want to be fully healed from the surgery anyway.

zivagirl: I asked about the boosts but was told that they wouldn't be needed in my case. He said they often do them if more rads are needed at the mastectomy scar, for example, but he didn't think it was necessary for me. So maybe I'm one of the few who doesn't have to do them. I was kind of in the gray area as far as needing rads to begin with--only two positive nodes.

shelleyj43: I also have a bolus used for each tx, and it's on for all the zaps. The only objection I have to it is that it's sometimes a little cold. One of the techs the other day, though, put it on my legs to warm a little while they were getting me into position. Clever! bubbalu, I think they gave me the same explanation for the bolus. I had a bmx and haven't had reconstruction yet, and the rads are on my left side, so I think that's a factor.

I hope everybody has a good Friday and nice weekend away from those machines.

I'm just now catching up on the posts from today.  I have 3 tats in black ink.  They are supposed to be insect sting, but 2 of them hurted. Initially during the CT, I was told the 3 dots were "it".  Not true, when I went for simulation, one of the techs had a field day with the black sharpie.  I ended up having to zip up my hoodie to hide the drawings.  Felt like Ms. Frankenstein.  I do have 1 circle tape. But the large broken up lines drawn on me is what made me feel uncomfortable and with this hot weather here in Vegas, it is hard to cover it up