DCIS girls starting radiation June and July?

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    julz4 -- yup, I know that waiting game, I was ready for that possibilty too.  It would not have been the end of the world, and I was sort of prepared for it, but I am happy with the way things have turned out.  I am lopsided, but hey - I figure it gives me "character".  What I hated the most was not having a plan -- the waiting around drove me crazy!  

    Infobabe, didn't you have an appointment today?? Or am I mixing up appointments? 

  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    BLinthedesert

    Yes I did.  They were very cooperative and I am going to have the 2nd path done by Dr. Lagios in CA.  I talked to his office and I will be faxing some forms tomorrow.  

    So, I  will do what he suggests.  First time I did not run into headwinds.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012
    Outstanding!  It must be kizmet Smile
  • achubb
    achubb Member Posts: 12
    edited June 2012

    Simulation on June 27th

    Possibly start treatments on June 28th

    Receive 33 treatments

    That is all I have for now, will give you more info when I get it on Wednesday.

  • mnkid
    mnkid Member Posts: 33
    edited June 2012

    I had my simulation this morning.  I'll start treatments on July 9th.  I'm also getting 33 treatments.  I was able to get a time slot that shouldn't interfere too much with my work schedule so I'm happy about that.

    The Medical Oncologist told me I never had cancer.  I just about bopped him in the schnozz.  I know it's not the horrible stuff he's used to dealing with but don't be smug, Doc.  I can't take Tamoxifen because I'm on an antidepressant medication that would block its effects.  But since I never had cancer I guess I don't need it anyway.    He also asked me to be part of a study on Herceptin use in HER2 + DCIS patients.  I said yes and then read about the side effects and changed my mind.  I have enough to deal with just getting through radiation.  It's been quite a week.

  • achubb
    achubb Member Posts: 12
    edited June 2012

    I started treatments 2 days ago, not too bad. Only 31 to go. Trying to keep a positive attitude can be tuff but it is doable. I bought some Palmers lotion right after surgery and plan to get some aloe to use during treatments. I find that soft tshirts turned inside out so the seam doesn't rub across surgery site or tender areas is very comfortable. Another idea (from another forum) its to buy oversized soft tshirts from thrift stores so when you 'lotion/cream' up, you can throw the tshirts away when they get icky. My most tender area is under the arm from the SLN dissection/removal. So hard to shave. But from what I hear, after some rad treatments there, it won't be an issue any longer (silver lining?) I am trying to work as well as MNKID above so good luck to you!  I went thru a little anxiety right at the beginning when I had my simulation but I think I ok now. What is the average time you ladies are getting the rad? Mine is about 2 minutes on the breast and 2 minutes under the arm.

  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    My BRCA testing came back negative! So now I go in this Monday July 2 for my simulation & signed up for the RADS Trial. Some gene variant that they also test for came back not conclusive. It has more to do with other health history within the family. More paper work & testing possibly to do. But the MO wants the RADS started ASAP! Looks like this is a go! Nerves anyone! Tomorrow night I am back to work ( night shift ). 6 out of 7! I hope I can get some sleep as I'm home by 7 am back out the door at 9:45 for blood work. Then on to my Simulation at 11:30! Crazy week! I know the fatigue is gonna hit me bad....I just have this feeling!

  • agrp1
    agrp1 Member Posts: 37
    edited July 2012
    I've had 3 of 28 treatments. So far the worst effect on me has been economic--there's a Hobby Lobby right across the street. Laughing I was really nervous going into it, but after the 1st treatment the nerves are gone. They zap me for 18 seconds from the top and 15 seconds on the side. (And it takes 50 minutes to get there and I'm relying on various friends to take care of my kids every day for 28 days. I will have spent more time poring over the childcare calendar than I will actually getting zapped!)
  • mnkid
    mnkid Member Posts: 33
    edited July 2012

    One down, only thirty-two to go!  I got all lined up and my dots put on.  They gave me the magic cream/gel to put on twice a day.  The actual treatment goes fast but it is kind of spookly lying there and wondering what's going on inside my breast and what's going to happen as we progress.  It's a very vulnerable position with my arms over my head and all hanging out.  In a few days it will be habit, I hope. 

    And it's my birthday today. 

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Mnkid....We did it!  One down & 32 to go!  Your so right it is very eerie & so very vulnerable!  I almost expected beams to come out of the machine! Surprised  I know that wasn't gonna happen!  Felt like a Si-FYI movie!  Beam me up Scottie!

    I hope you did something extra special!

  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2012

    I am halfway through my radiation. I have some burning starting, but not bad enough that I cannot wear a bra, but some clothes do bother me. I avoid heavy knits, stiff cottons or a seam that crosses the area. My sports bras bother me more than my regular bra, but that may be just me. I use my cream faithfully and use sunscreen if I'm going to be outside (always covered), but I have very sensitive skin. The area involved was just on my chest below my collar bone to my cleavage, but now has begun to redden under my breast as well. They have given me Silvadeen cream for the itching, but I think I will need something else by the week's end. The treatments have made the area around my surgical site sore again (apparently it aggravates the nerve endings), but nothing Ibuprofen doesn't alleviate. Also I have a dry mouth and am very sensitive to heat. Not good since it has been in the 90's and 100's here lately. The fatigue has begun as well, but it is not overwhelming. I just have to pace myself. I drive myself to and from treatments. All things considered, it has not been that bad.

  • achubb
    achubb Member Posts: 12
    edited July 2012

    Happee birfdai!! Hope you had a nice one, considering. I have had 7 and it does seem to get easier each time.

  • mnkid
    mnkid Member Posts: 33
    edited July 2012

    Thanks for the birthday greetings, julz4 and achubb.  NLee, I hope you get something that's effective for the itching.  I have found sports bras to be more uncomfortable than regular bras, too. 

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Second one done. Not doing well at all! I went into work last night after about a hour & a half I started getting really nauseated! Felt really green all night & still do. No other symptoms, no bugs going around in the family. It puzzled the nurse as she said it's too early for that. So I'm guessing sometimes you can get nausea with RADS. I have some anti nausea meds at home the nurse told me to take them & let her know how I feel tomorrow. Trying not to worry as I ended up in the ER in February with same symptoms. Total heart workup! Everything was ok, but still I have the risk! Nausea meds are taking the edge off. I'm gonna sleep now. I will catch up later or tomorrow!

  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2012

    I get nauseated sometmies too, but I wasn't sure if it was the rads, the medication or a combination of the two. Some days I'm fine and some days I get light headed and nauseated. I'm glad I"m not working right now. I'm sorry you're having problems. I hope you get some relief from your meds.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited July 2012

    Hi Ladies,  I felt a little nauseated from rads too.  It hit me pretty early -- RO and nursing staff said, "it is not from RADs".  Luckily, it did not get any worse through treatment.  

    I think it might have been partly stress and partly dehydration.  I did take B12 supplements and made sure I got electrolytes (sport drinks and water).  All of that said, I ran every day, and worked full-time up until the last week ... it wasn't as bad as I had imagined.  Two weeks since finishing and I am almost back to normal!

    Good luck!! 

  • Bar65
    Bar65 Member Posts: 20
    edited July 2012

    I started AccuBoost this week for a week and a half followed by the other type of radiation for another 5 1/2 weeks.  Anyways, I've only had three sessions and I feel fatigued and my brain feels foggy afterwards until I drink coffee, and then I feel okay.  Because I'm getting my boosts first, do you think this is normal to feel this way? 

  • mnkid
    mnkid Member Posts: 33
    edited July 2012

    One week down!  Only 5.5 weeks to go!  Idon't know if it's my imagination but my breast started feeling a bit tender around the areola last evening.  My skin is extremely fair and I was told my skin may react more because of this.  I'll just keep putting on the magic cream and see how it does.  I'm glad to have the first week behind me. 

    I sure wish it wasn't so hot.  It just makes it more tiring to run back and forth everyday.  Oh well.

  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2012

    mnkid - My skin is sensitive too. My skin has developed a large pink square on it. I have found that aloe is a big help along with the Rx cream and the lotions. Use them liberally and often. It really does help. I also cannot be outside in this heat. I don't know if the radiation or other medication but I get over heated easily. My doc said the radiation irritates the nerve endings which is why my incisions and breast and chest cavity in general have started to hurt again, although this seems to be easing up as I'm nearing the end of my radiation. Thankfully all the side effects are supposed to stop a few weeks after the radiation ends. :-)

  • mnkid
    mnkid Member Posts: 33
    edited July 2012

    Thanks, Mini1.  I do have some aloe vera gel.  I'm going to use that in between the Rx cream applications.

  • mnkid
    mnkid Member Posts: 33
    edited August 2012

    Looks like this thread has gone kaput.  I have 2.5 weeks left of treatment.  Having some skin issues and the fatigue is real.  Hope everybody else is doing ok. 

  • Mini1
    Mini1 Member Posts: 1,836
    edited August 2012

    I think a lot of ladies have gone on to other threads. Or hopefully they are busy. :-) I'm done, but still tired and a litttle down. From what i read that's normal. Kind of like the post holiday let down. Eveything is very structured in treatment and now it's not and i haven't gone back to work yet.

    How is your skin holding up? Mine is pretty much back to normal with the exception of one area that is still a bit itchy. Not hard or leathery, yet anyway, as some posters experienced, although I didn't have chemo, so that may be why. My skin actually feels pretty good. A little tan, but I use the tanning lotions and that evens things out. 

    Only 2.5 weeks left. That's awesome. I found the SE's to ease up quite equickly. Hope the same is for you.

    HAPPY SATURDAY!

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

    mnkid

    It went kuput because I opted out of rads altogether.  However, I would be very interested on how you have done.  You say skin issues and fatigue.  

    The fatigue is to be expected, I guess.  Some say diet and exercise helps with that.  I hope your skin issues don't get any worse.  

    Sign back in here if you wish as you go along.

  • julz4
    julz4 Member Posts: 2,490
    edited August 2012

    Hi Infobabe....I'm hanging in there.  Same as the girls above.  Except I have had some other not so norm issue's.  I won't call them SE's as my RO said they aren't.  My new Gastro Dr. says she sees my stomach blahhh issues like me often & says they are SE's!  Well I got nausea from the get go.  I have GERD & am feeling better as I am now on double the nexium.  I have to go for another Endosopy when this is all over in October as I am having other GERD issues, trying to swallow.   Never ending other health stuff.  I am gaining the weight I lost back making my RO happy.  I have a sore throat & a cough too.  Sore throat still, cough is better & I'm glad cuz I would have know idea how to stay still through the last 13 rounds of RADS I have left.  I wish I didn't have to work the rest of this as I drag myself up & down the Halls at work at times.  Wishing I was in the beds of the patients I take care of ....sleeping too!    

  • mnkid
    mnkid Member Posts: 33
    edited August 2012

    Thanks for posting, jlz4.  I'm so sorry you are having other effects and monsterous fatigue.  Sometimes I just put my head down on my desk.  Well, just this morning an area in the crease under my breast opened up and is bleeding.  I'm kind of freaked out.  I'll see my RO tomorrow and I'll mention it to the nurse before treatment.  I've been using the cream they gave me and an over the counter steroid cream.  I have a gauze pad on it.  Hopefully they will have some ideas. 

  • julz4
    julz4 Member Posts: 2,490
    edited August 2012

    Mmkid I don't blame you for being freaked out!!! That would scare me too. In fact if my skin opens up or anything like that I won't work till I'm done & healed. I don't want to catch anything at work. Besides it's so physical & I know I would knock it. Its all I can do not to hit my sore lefty all the time now. Be prepared they may stop your treatments for a few days. To get it to heal up a little. I will tell you this gauze pads are a little ruff & may scratch. Might I suggest site pads by Curad. I got them at Wal-mart for after my biopsy & surgery. They are thick pads used after surgery on incisions. We in the medical field refer to them as ABD pads. They cushion & are soft absorbent. I just layed them in my bra didn't use any tape as I had an issue with my steri strips after my biopsy. They really felt great. See what your RO wants to do tomorrow before you have your treatment. Let us know how things go!!!! Rest keep your hands super clean when touching & applying your creams!

  • Mini1
    Mini1 Member Posts: 1,836
    edited August 2012

    I also had a sore throat and a dry cough, but that eased up pretty quicky. Sorry you are experiencing the skin opening. They likely will stop your rads because it will not heal with radiation. Mine was delayed because was on my surgery incisions took a long time to heal and the doctor said it would not heal if I was getting radiation as radiation prevents the skin from rebuilding itself, which is what wound healing is.

    Hang in there. This too shall pass. Even though it doesn't feel like it right now. 

  • achubb
    achubb Member Posts: 12
    edited August 2012

    Sounds like most of you on this post are strong and positive about this journey

     My skin is becoming red and very sensitve, the stickers are leaving my skin raw wheh they fall off ( mild case of adhesive allergies). I can only use Aquaphor 2 times a day and it is getting really hard to wear a sports bra or any bra for that matter. I have about 9 treatments left. But like everyone I have read on this post and other posts, the fatigue is terrible. It is a different kind of tired than I have ever experienced. I am eating protein bars as soon as I finish the treatment each day and it helps a little.

    Stay strong and be brave, the fight is almost over.

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

    julz4 

    I can't compliment you enough on carrying through, going to work with what is going on.  It is so hard, I don't know how you do it.

    I do believe the abdomen and throat issues are SEs.  I have been told they are due to poor positioning.  The rays are hitting areas other than the target.  I hesitate to interfere with you RO but that is what I think.  I don't know if the SEs are long lasting though. 

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

    Mini1 

    I read on this web site to generously use corn starch baby powder.  

    Almost immediately, I found a weeping sore under my good breast caused I think by the heat and sweating.  It is so hot here this year.  

    So I got the baby powder with Vit. E and aloe and started applying it generously.  It did cure it but I have to keep at it.  Still do. 

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