SEPTEMBER 2008 rads group

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  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited September 2008

    Hi Ladies, hey Roxi,

    I am following a few ladies from the May chemo board, i am 2 weeks out from my last chemo.          I just got back from my simulation and tattoos yesterday and will head to radiation on Sept. 15. Will be leaving the family at home for 4 weeks (husband , 12 yr old daughter...my boys are 21 & 19 and on their own)  as the place i get radiation is 4 hours away over a few mountain passes.  They will come and visit on weekends ....i'm hoping !      I checked out the place i will be staying, it's a hotel not far from the hospital,  it has a kitchenette, separated bedroom and pull out couch for guests so it should work out just fine and there is a mall across the street with everything i should need.  

    Compared to chemo this should be an easier rode, not to minimize anyone who has SE or issues with their radiation ! But for me this doesn't have the fear factor that chemo had. I'ts just one more adventure on this detour i have taken in the last 6 months, but i do see the flag person up ahead who will direct me back onto the road i should be on Smile

    Looking forward to sharing experiences with all of you. Innocent

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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    Well, 4 down...

    Hi, Mary! Glad to see you in the group! Rads are definitely easier than chemo. The only bother, so far, is that they're every day for a month or more, so you have to plan to work it into your day EVERYDAY. That can mean disrupting work, an extra commute, or finding childcare. So it's more a problem of logisitics.

    The actual treatment is nothing as quality-of-life changing as chemo. There's no dramatic hair loss, taste changes, or neuropathy. You do have to watch for burns and becareful caring for your skin. Most treatment centers have their special ointments they recommend or provide. 

    Midsum, I don't know if anyone here is doing Mammosite. I don't know what Contura is, but it sounds interesting.

    Stephanie and Rose, I bought some Aloe Vera gel to alternate with the calnedula ointment. I saw the Nature's Earth at teh grocery stor, and yes, it was with the sunscreens. And even though it saida 100%, there were several other ingredients listed on the back. So I ended up buy another product that said it was 99% Aloe Vera and actually had fewer ingredients on the back. I figured they sounded more "truthful." It was in the organic skin care section (my grocery store is very specialized, LOL). Lily of the Desert is the brand.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    NancyD - was one of the ingredients DMDM Hydantoin on the Lily of the Desert Brand? I noticed on the aloe vera Fruit of the Earth it had this ingredient and when I looked it up I found this http://www.orlandoskindoc.com/test.dmdm%20hydantoin.htm I know there have been good results with the aloe vera but I think I've changed my mind on trying it. I'm sure it's in lots of stuff I use but I don't want it on my skin now.


     

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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    Rose, here are the ingredients in the Lily of the Desert 99% Aloe Vera Gelly [sic]:

    Certified Organic Aloe Vera Gel

    PEG-33 (and) PEG-8 Dimethicone (and) PEG-14   [odd, but that's the way they list it with the parens]

    Retinyl Palmitate (Vitamin A)

    Tocopheryl Acetate (Vitamin E)

    Ascorbic Acid (Vitamin C)

    Acylates/C10-20 Alkyl Acrylate Crosspolymer

    Disodium EDTA

    Chlorphenesin

    Butylene Glycol (and) Iodpropynyl Butylcarbamate

    Phenooxyethanol (and) Caprylyl Glycol (and) Sorbic Acid

    Sodium Hydroxide

    ******* 

    It says it "99% Certified Orgainc Ingredients" so I wonder just how much of the 1% on the list are not orgainc. Funny how they can make the vitamins sound like they're something weird with their chemical names. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Good, I must of looked on the wrong product. All those ingredient look great. I'll try but I  doubt I can find it here. I just wanted to have something else on hand.

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  • Boo307
    Boo307 Member Posts: 222
    edited September 2008

    I was really confused about all my tattoos, 12 for bilateral treatment of four fields, so I asked the techs.  I couldn't imagine what they were all used for. 

    The techs were so nice and patient in explaining each one.  They said the ones half way down my sides are the "leveling" tattoos.  Lights come in from each side of the room and they line up the tattoo on my sides so I am at exactly lined up on the table. 

    Then they put a Styrofoam block on the table where I lay and I saw all the lights hitting it!  They line one light from the machine up with my chest center dot, and then slide the machine over and center the machine on the tattoo in the middle of my breast by the nipple.  Then they shine the lights on the radiation field and line it up with the two chest center tattoos and the two on the upper side of my chest.  With that they hit exactly the same area every time.

    I thought the tattoos where to outline the radiation field, for treatment use and future reference.  I couldn't figure out why I had them elsewhere as well.  Once I saw the Styrofoam lit up it all made sense!

    I hope everyone has a comfortable week.

    Betsy

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  • Boo307
    Boo307 Member Posts: 222
    edited September 2008

    I found in my closet aloe that I had bought a while ago, Aloe 99.  It is 99% Aloe Vera.  I can't find it locally, but it is available various places online.

    Betsy

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    Here we go, into another week! Hope it's a good one for us all.

     Ace 

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  • Looneymom
    Looneymom Member Posts: 144
    edited September 2008

    I am joining the Sept group.  I have bi-mast with expanders, long story - have a 40-70% chance of losing my expanders or later after implant trade out due to rads - so I am not really happy about the rads.  But here I go.  My first treatment of the six weeks is today at 2:pm.(central)  I am glad to have some rad buddies.  I am a little afraid -  but when I saw the  other ladies that had already went thru chemo and now doing rads during simulation ink markings last week I  felt guilty (about being afraid and feeling sorry for my self). For some reason I am having problems dealing with this treatment - more than the bi-mast. and 3 other breast surgeries I have had in the last 90 days.  Maybe this is just part of the process of dealing with BC. You all have a very positive attitude and  I want to be more optimistic my treatment and outcome. I will FU after my fist treatment.    

    Holly     
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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    Looneymom, did you do chemo after your surgery?  One of the reasons I did not go with implant recon is that I had mostly neoadjuvant chemo and knew I would only be having two chemo doses after surgery...and that would not be enough time to complete fills and exchange for final implants before radiation.

    The rad tx itself is not hard, but I feel for you possibly losing your implants. It's a difficult thing to go through only to have them pulled for one reason or anoher. Do you have a back-up plan? I decided early on, based on my tx plan, that I would try for a DIEP sometime next year.

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    Just came back from my first treatment.  They first took some xrays to be sure everything was lined up properly, made some markings, then proceeded with the radiation.  Two short doses in one field, then they moved the machine around to the second field and gave two more short doses.  Each one only about ten seconds.  The machine buzzed, but I didn't feel anything.  The tech then tattooed four more dots in addition to the three I got in simulation.  The new dots outline the radiation area, and the first three I got were reference points to line me up properly.  They told me not to put any creams on this first week.  The nurse will give me something next week to start applying and I'll get instructions at that time.  She did say I could use the Tom's of Maine deodorant if I applied it at least two hours before treatment, otherwise wait til after treatment.  I now have an 11:45AM standing appointment so I'll put it on right after my shower in the morning.  I went without today and felt not so fresh when I arrived for my 1:30 setup.  Ha!

     Anyway, it was not bad.  About 30 minutes total including dressing time.  Should be shorter going forward.  It's hard not to be anxious, as I've had trouble sleeping all week with the anticipation.  But, I think I'll sleep much better tonight having the first one out of the way.  Now, only 34 more to go! 

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    Hi Everyone,

    Had my simulation today but still no date for the actual radiation.  I was told the 15th but the techs were not to sure that would happen. Like everyone said it didn't take that long. Felt drained when I got home and I'm not sure why.  It's been just over 3 weeks since my last chemo and was starting to feel pretty good.  Maybe it was just having to go back to the cancer clinic - the break was nice.

    Hope everyone has a great week and it's been great reading how others are doing.  It made going in today pretty easy.  Knowing what to expect really helps with the stress. 

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  • TexanCupig
    TexanCupig Member Posts: 1,539
    edited September 2008

    Hey y'all...I have a silly question to ask, only because I haven't started radiation yet...how long does it take to have everything set up before the first treatment?

    I'll tell ya what, I sure don't want to have to be away from my home for six weeks!  I've been getting emotional about leaving, but like my other half says, it's for the best?!? Cry

    I'm still a bit scared like I was before I had my first chemo treatment, but I have faith that all will be allright, ya know?

    I hope y'all have a great week!

    Sharon Laughing

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    Holly, I hope everything goes (went?) well for you. It sounds as if you've been through the wringer. No wonder you're tired and anxious. Please don't feel guilty! I didn't have a mastectomy or chemo, and it's still been hard for me, anxiety and energy-wise.

    Texan--My CT appointment took about a half-hour to 45 min. I then had another appointment that took a while because they did several xrays and marked me up all over (again--they'd done that at the CT appointment) and wrote on me for quite a while, lining the machine up exactly. Then they did the first treatment. After that, they tattooed me and wiped off the other marks as best they could. That appointment took about an hour and 15 minutes. I think some people get their tattoos or marks sometime before the first treatment in a separate visit. But I got mine the same day I had the first zap. Hope all goes well for you.

     I also wanted to mention to everyone that I found some aloe gel that has only 3 ingredients: aloe, sodium carbamer, and methyl parabens. It's called George's Always Active Aloe, and I got it at the health-food store. The website is www.georgesaloe.com

    Cheers! 

     

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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    Sharon, depending on how your rad clinic does it, it will probably be between 30 minutes and an hour. Maybe a little more if they have you see a dr or nurse practitioner before the treatment. The hardest part is holding the position for so long. After the first treatment, they set up very quickly and you don't have to hold the pose for more than a few minutes.

    I started on a Tuesday and they willl have someone (either dr or np) see me every Tuesday. Measurements will be checked for lymphodema every two weeks, skin will be checked, weight, etc. Also x-rays will again be taken every Tuesday to see that things are still lined up.

    Ace, the aloe sounds good, except for the methyl parabens. Isn't that questionable?

    I thought I'd use my Lily of the Desert Aloe Vera Gelly in the morning after my shower and just use the calendula ointment at night, because the ointment wasn't being absorbed and left my skin very greasy. The rad techs were having a hard time marking it up with the permanent marker even in the late afternoon. But when I thought about it some more and mulled over the ingredients, I decided that since Vitamin C is anti-oxidant, and we're supposed to avoid anti-oxidants during rads, I won't use it. Now I'm on a serach for another aloe product that has NOTHING added. Maybe I should just buy an aloe plant and sacrafice a leaf everyday to my skin Smile

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  • jsutter629
    jsutter629 Member Posts: 13
    edited September 2008

    Hi Everyone!

    I think I will pick up a plant today too Nancy :).

    I had my first rad yesterday evening and last night was fatigued and a bit spacy. I also seemed to have hot flashes and chills in the middle of the night. I also have a headache which has continued today.   I have discomfort ongoing related to the implant but do feel more sensitivity under my arm today. What is a boost by the way?

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  • Looneymom
    Looneymom Member Posts: 144
    edited September 2008

    FYI - my simullation took about 1  hours, I think it depends on your treatment area?  

    Thanks for the support girls (and RedheadAce1 Laughing) I made it thru the first treatment - it was really easy compared to some of the other things I have been thru.  I guess it was a mental thing. Nancy D. answer to your ques.  I was dia with DCIS.  Most with this (98-99%) do not need rads after mastectomy.  So before  bi- mast (after lumpectomy) choose implants over tram flap because I had never had any surgery and wanted quick recovery.  (So much for that wish) But after the mast.  it took a weeks to get path reports reviewed by new doctors. Because of the large amt of DCIS - and some micro invasion  and close margins I am in the weird gray area.  I have had 1 tumor board from Meth. Hosp and MD. Anderson group of doctors look at my slides (not just path reports) and decided I needed it as back up.  I have Grade 3 DCIS and other not so good descrip. of my BC.   I am 11 out 12 for it coming back.  Some doctors may even consider it invasive but because of size - it was not in my 3 lympnodes they removed.  I have had 1 oncol. 1 breast oncol.  and 3 rad oncol.  for 2nd opinions to make sure of this dia. and treatment. I also got infection on cancer side they took out expander, put back in 10 days later.  So I am going to try to keep them  as I started this on June 3. My back up is tram surgery  if I have to later. Sorry so long.    

    Now going to my 2nd rad treatment this afternoon  - after reading all things on rad threads I came home put on aloe vera gel, then later vit. E. lotion.  Opps, it took off most of my new markings (red marker) I still have purple ink dye but I think I may be in trouble today because of this.     I did feel some tingling during treatment.  The tech's so I should not but I know I felt it, so I am doing stretch exercises, and vitamin for radiation treatment (they do not know this I know it is controversial) trying to save my skin and muscle that is stretch tight across these expanders.    Gotta run - looks like I am writing a novel.  I will be back tomorrow.  Thanks you all.  Holly

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  • pattyk
    pattyk Member Posts: 25
    edited September 2008

    I go for my first rad treatment in about 45 minutes.  Nervous a little.  Will feel better after I know exactly what to expect.  They tell me I will need 6 weeks of radiation and then on to hormone blocking therapy.  No chemo, so that's good news.  I have my moments, but usually am pretty positive.  Hard to talk about all this with someone who doesn't have cancer.  Here's hoping we all do well.

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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    Holly,  my rad techs said not to worry if the marker came off or faded. They use them to help line up the radiation head, but are careful to remeasure every time. If you didn't have tatts, there might be more of a need to keep them visible, but they'd cover them with some clear plastic in that case.

    Off for rad #6 shortly. I have a weird receptionist I have to deal with. For the last two treatments, she's "forgotten" to sign me in and let the rad techs know I'm there. So I sat there reading for over an hour past my appt time until a rad tech came looking for me. Any suggestions for how to deal with that?

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  • Estepp
    Estepp Member Posts: 6,416
    edited September 2008

    Hi ladies,

    I am not a sept. rads gal but I have a question if I may.

    If you had 100% of your chemo before your mast., and it killed all the cancer in the nodes ( I have 1-3 poss...) would you still do rads? I am 40 and I am responding very well to chemo. Lump in breast is 50% down after AC and the nodes cannot be felt anymore.

    I know everyone has this hard decision to make. They wanted me to do chemo first to shrink or eliminate cancer before surgery and they think I can do a lumpectomy.. I do not want that, I will have a mast.

    Any any input would be helpful to me.

    TY!

    Laura

    ps.. I have not met with a rads onco yet as that is so far into the futher for me now. Surgery in Jan.

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  • enjoylife
    enjoylife Member Posts: 578
    edited September 2008

    I jsut got done with my last of 6 chemos 12 days ago just starging to get the feeling back in my mouth and I start Rad on 9/23/ I am hoping my hair will still be able to come back. I am very lucky my hosp is only about 2.5 miles away so I shouldn't t have to loose allot of work, does anyone suggest anything for the fatigue or does anyone know if it will affect the way things taste like chemo its been awful ... I am excited to start this and get it over girls. I have been pretty lonesome I have sons but they don't want to listen you know how guys are so this place has been my best friend .....

    We are all Sept ladies.....I should be done in Nov for my 57th young birthday and I want my shape and hair back ...

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  • enjoylife
    enjoylife Member Posts: 578
    edited September 2008

    Oh yes Patty I have 3 best friends but none of them have a clue one friend says I know when I tell her how tired I am and how so many things taste like poop or if its something you always loved you hate now but you are so right. I didnt join any support groups because like most of us I live in the real world too and only have so much time and energy for work if someone tells me one more time I love your wig I will pull it off and say you wear it and I am normally positive but like you said after months of it your done.... oh yes my 17 year old thinks becasue mom stopped chemo she should be good ole mom again I will but now its Rad. he said you wont be tired you will be fine ha I will ....

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  • Makratz
    Makratz Member Posts: 12,678
    edited September 2008

    You ladies are all Awesome!  I just had my second treatment and so far so good.  No pain or burning yet but it is really nice to know what to expect.  I have learned so much from all of you.   Good luck to all and good health!

    Patty, I hope your first treatment went well.

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  • pattyk
    pattyk Member Posts: 25
    edited September 2008

    My first treatment is over!  Was on the table for about an hour for some films that needed to be taken, so the only thing that hurts is my back.  Leave to me to have BC and have a sore back.  Now that I know what to expect I feel better....one down and 34 more to go.  Good thoughts to everyone...we're going to make it.

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  • pattyk
    pattyk Member Posts: 25
    edited September 2008

    I really think that until you get the diagnosis no one has a clue as to the emotional stuff that goes on.  I hope your strength, hair and anything else you want comes back.  My daughters, both married, can't deal with what's going on.  One is a cheerleader telling me I'm fine and the other scolds me if I sound sad.  I know they mean well, but sometimes I get tired of being "strong".  It's good to have a place to be me.

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  • sharpie
    sharpie Member Posts: 13
    edited September 2008

    I go tomorrow for my second x-ray and first treatment. It's at a local facility, not the hospital where I had surgery. I was fine while during all the visits to the hosptial, but I can't seem to get relaxed at this new place.

    Had I been able to travel to the hospital to get treatments (2 hrs. away), it would have been 18 treatments (15 with 3 boosts), but at the new place, their standard is 33 treaments (30 with 3 boosts).  I haven't been able to mentally accept the difference in length.

    I can seem to hold it together until I get in the car. I'm hoping it will get easier.

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  • Looneymom
    Looneymom Member Posts: 144
    edited September 2008

    I am back from my 2nd treatment - they did not get mad because my new marks were gone - gave me 3 or 4  "freckle tattoos"  - that ok because I already have lots of freckles.  They also put purple ink marks on me that last longer.  They did not say anything about my aloe vera and vit. E lotion or not to use!.  Smile  Hey Sharpie, I am no expert on rads, but I have visited 3 rad oncol. in the last few months - and they all from different hospitals - they may have been a little different in opinion and maybe treatment area for rads - but all of them had same number of treatment and were close on the boosts.  Going from 15 to 30 seems strange to me.- They are doing new trials on less/shorter  treatments.  I think I would at least make them explain the reason why their standard treatments  are twice as long? We are our strongest advocates.  I have learned the hard way,  doctors and hosptitals can and do make mistakes.   We just have to to stick together & help each other and educate our selves. 

      Gotta run and do middle school open house and be the football practice  taxi mom.  Talk to you ladies later.   Holly

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    enjoylife, I didn't have chemo, but everyone on here who has says the rads is a piece of cake compared to the chemo.  I haven't seen any mentions of rads affecting taste, just some sunburn and fatigue.  My techs said the fatigue and sunburn don't happen to everyone, so I hope you skate through rads without too much problem.  Good luck!

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  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2008

    Hi everybody - thanks for all your posts - they really help me to get through all this.    Just finished number 12 - believe I'm probably the "oldest" in here in terms of number of treatments finished.   Everything is going ok - no burning yet but I do have fatigue pretty bad - pretty much have to take a nap every day and I'm sleeping almost 12 hours every night.   That is sooooooo not like me at all.    For those whose radiation field is going up your neck - I HAVE had a really bad sore throat - hard to swallow - especially food - feels like something is blocking the food from going down.    Talked to my doctor - he said there was NO WAY it was the radiation - too soon for that to happen - he gave me some stuff to swallow 15 minutes before I eat - it pretty much numbs my esophagus - helps - but still hurts.    Today one of my radiation techs asked how I was doing - told her about the throat problem - she said that it WAS more than likely from the radiation because they are putting the beam right up next to the esophagus.    They did somemore films (which is done once a week anyway) and did a slight adjustment to the field and they are hoping that will help.    They said for me to try my best to turn my head as far to the side as I can during treatments - to keep the beam away from the esophagus.    I only mention this for those who are having this done so they can be aware.    My doctor is excellent but I was pretty upset by his dismissal of my side affects - but thank goodness the sweet techs understood and hopefully have helped me out.    I'll keep you posted on what happens with that.

    Everybody hang in there - you're all doing great!!!   Laughing

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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    ARGH, twice now I have written a post only to have it disappear for one reason or another.  Let's try again.

    Maura, welcome to the September Rads group! Don't let the 17 yo get away with making you "all better" if you don't feel that way. I have an almost-17 yo daughter and I know how they will try. Rads are easier than chemo, at least in the beginning. Burning and fatigue may be side effects towards the end. Maybe give him the dinner chores if you find yourself too tired. If he's hungry...he'll cook or order take out!

    Stephanie, thanks for the tip! I'm having my clavicle radiated, and was getting kind of lazy about keeping my head turned as far as they had positioned it. But from now on, I will stretch it out of the way as far as I can.

    Rad #6 done!   24 to go!

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