SEPTEMBER 2008 rads group

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

    Hi y'all!  Thanks for your responses!  It's been a rough couple of days for me, because I don't want to be away from here for six weeks, but I know I have to do it!

    Once I get to Anchorage, I'll let y'all know what's going on...we'll be leaving here in the morning and should be in ANC in the mid-afternoon sometime...

    I'm REALLY glad this thread was started! Laughing

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    I got my markings today and start rads on Tuesday (9/16) - puts me finished on Oct 30 if no delays. I had to hold that horrible position for 48 minutes without moving and thought I was going to collapse- and I have been working out since my surgery in March- I cant imagine how other people who dont have full range of motion get through that simulation. My tech and the doc did say they try to be very precise in the measurements and maybe that is why it took so long. It was a 2 hour appointment with the simulation and CT scan.

    tchmuzik - thanks for the tip on turning the head- I have markings up part of my neck so I bet that will apply to me! Sounds like I better get the soup recipes out if I am going to have a sore throat for a while.

    Kristy

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  • searching4
    searching4 Member Posts: 55
    edited September 2008

    Well, I was all set to go for the Mammosite or Contura partial breast but my surgeon vetoed it.  My cavity extends to right below the skin.  So I went for my planning--   I only got 4 tatoos!--  and start next week with a sim and then the treatments. 

     tchmusik:  was your tumor in one of the upper quadrants?  Hope that adjustment helps you.  My tech did have me turn my head away from the breast in question.

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

    Hi everyone. Rad #7 was quick and easy, even with them taking their weekly x-rays. I was in and out within half an hour.

    However, my skin is starting to get pink. I'm going to slather on the calendula ointment tonight and hope for the best. 

    Midsum, the regular rads aren't too bad, but it seems they run longer; on an average of 5-7 weeks.

    Sharon, have a safe trip and check in when you get to ANC. 

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

    Hi Ladies,

    Well this was # 7 for me too. I met with the dr.and nurse yesterday. I know it's a no no but I've lost weight but dr. didn't say anything so I guess it wasn't enough to be concerned about.  I was given a prescr. for steroid cream - to apply it morning and night. I put it on last night and this morning and my breast was sore all day. I'm going to skip the cream tonight - because I just have a feeling it is sore because of the steroid cream. The tech. said that it wasn't the cream but I can tell in the morning.

    Good to hear from everyone !!

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited September 2008

    Hi all, I go tomorrow for my markings and MRI. Will keep you all posted. Had my herceptin solo today. I'll have this until June. Talk to you then.

    Mary 

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  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2008

    Midsum - my tumor was in the lower quadrant but cancer cells were located throughout my breast - and when the surgeon removed lymph nodes - 13 of 15 were cancerous.    I believe THAT more than anything is why they are going after the lymph nodes in my neck   The surgeon and the onc. both feel that they got everything but of course you want to do everything else possible to make sure you wipe out stray cells.   The PET scan I had before chemo and surgery did not show any cancer anywhere else in my body but in the breast and lymph nodes so I feel good about that.     Oncologist wants to do another PET scan right after radiation.    I will be holding my breath for those results.     My throat has been REALLY sore today so think for a few days I will just eat liquids or very soft foods and see if that helps.    13 treatments and still no burning.

    I tell you - reading where some of you are having to leave your families for treatment really humbles me - I will never fuss anymore about having to drive my hour there and hour back every day.   Hang in there!!

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    NancyD and Rose--Looks like we're on the same timetable. I had 7 today and started to get pink yesterday. I've been sore for a while but it sort of comes and goes. Hang in there everyone, the weekend's coming!

     Rose--What is the name of your cream? 

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  • SonCallsMeEarl
    SonCallsMeEarl Member Posts: 76
    edited September 2008

    We are all doing great!!!!   Every one of us are "strong"....that's the way the Lord meant for women to be, and don't you forget it.

     I will not be afraid to walk this path, because I know He means it to end on another one.

    God Bless you all

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    I turned here for encouragement this morning and received it. I'm 3 weeks post bi-lat (1 modified radical 1 simple), I had 16 does of chemo before surgery. Now I'm looking at 30 radiation treatments. I go through my simulation tomorrow but won't actually start until 9/29 because I agreed to be in a clinical trial. I really want to help the cause for the next person but not happy that my treatment is delayed.

    I give you all much credit. I have not gone back to work and I don't think I will until after radiation. My self esteem is at zero. I wasn't sure how I felt about reconstruction but when I learned on Monday that it might not be an option for me, I realized how much it truly meant to me. They will be radiating the area where I had a breast.

    I'm so sad. Maybe I should go back to work. I'm 50 and have worked my entire life. My children are all gone. I never minded being an empty nester but that is perhaps becasue I never stayed around the nest much.

    Thanks for letting me vent.

    Jane

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

    Dear Janloy,

    You are not alone.  You have been through hell.  Now you need to continue to take care of yourself.  I know you can do it!  Sometimes its helpful to go back to work simply to put your mind somewhere else.  You need to decide what is best for you.  I have found reading this website to help me alot.  You realize you are not alone.  Others can give great advice too. I will pray for your peace!  Hang in there!!!!

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  • LorenaB
    LorenaB Member Posts: 937
    edited September 2008

    Jane - in my case, working through radiation has really helped me to feel like my life is getting back to normal.  It is much easier than chemo, for me anyway, and until the 5th week I felt almost fine.  As for the reconstruction -- I had a unilateral mastectomy and I'm having radiation to the chest wall as well. I was told that I am a candidate for reconstruction after the skin heals from radiation.  Maybe not implants, but the flap surgeries are definitely options.  I'm planning to have a DIEP flap reconstruction in the spring.  So if they tell you no, look for a second opinion!

    I will be DONE with rads tomorrow -- hooray!  My skin is finally feeling the effects of this, it's peeling and red and uncomfortable, but I still think this is easier to handle than the overall yuckiness that came from chemo.  And I have hair again -- everything is easier to deal with when you are not bald.  Tongue out

    Have a good day everyone!

    Lauren

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Thanks. Maybe I'm just having a bad day.

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

    Hi Everyone,

    I just finished my 4th treatment today.  Still no problems yet.  I just keep applying aloe to stay ahead of the game.  I have a question regarding boosts.  I need 25 radiations and 8-10 boosts.  Can someone who's done the boosts tell me how they are different the regular rads?  Are there more side effects? Last longer? Painful?  Any help is greatly appreciated.  THANK YOU!

    Linda

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  • tomatojuice
    tomatojuice Member Posts: 382
    edited September 2008

    Just back from my first of 29 rads. I told the tech I hated it. Also told him I thought I could smell it. He asked me what it smelled like, and I said burning flesh. He said no way. I don't think it is really possible that I smelled it. Definately must be pychological. After I left I walked over to Sloan Memorial kettering seeking breast cancer support services. I couldn't find the right building, so I will go back tomorrow. I know its fast, and it doesn't hurt,but wow it really bothers me. I hate it so much. The tech did tell me though that I was an easy patient. When I was finished I just wanted to run out of there. Hoping it gets easier !

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Hi Everyone,

     Tomatojuice - I feel for you- I hit a real wall during chemo and told the nurse just about the same thing- she reassured me it was normal and then asked if I thought I needed antidepressants LOL- I said NO I just needed chemo to be over with. It is so hard to be so sick when many of us NEVER felt bad at all before diagnosis!

    I found a shirt with a slightly higher neckline than yesterday but my tatoos still show and I really dont like it- I have dots on my neck too. I didnt realize that until I left the simulation yesterday and I wish I would have asked if my neck is also being radiated. I wish I had more hair too- I really dont like the lack of hair and having tatoos showing!

    I am back to work and enjoying it- makes me feel more normal and a lot more productive than the 3 days a week during chemo. However, I do notice more fatigue some days and I worry about that once rads start next week.

    Better get back to work- wishing everyone a great weekend- ours will be rainy thanks to the hurricane in the Gulf- it is supposed to pass through East Texas this weekend.

    Kristy 

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  • tomatojuice
    tomatojuice Member Posts: 382
    edited September 2008

    Gee Kristyann I sure hope I didn't scare you, being you will start next week. Most people here describe rads as a walk in the park compared to chemo. And it is really easy. I am just a nervous wreck kind of person, have always been that way. I think dealing with this for 7 months now is getting to me. Thats why for the first time since dx I'm looking for some help.I also was offered an anti-depressant, but turned it down. Today was my 1st day of rads, I know I will feel better about it tomorrow. Doing something you enjoy is a key factor. You will do fine.

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    Lauren - hurray on the hair and almost being finished rads.  I still don't have my start date and was hoping it would be next week.

    I was told because I hadn't made up my mind about reconstruction that he would make my treatment longer (with a lower dose per treatment) that would be less damaging on the skin.  I wanted that option open in case I want to do it down the road.  

    Tomatojuice - I found just being at the cancer clinic really ruffled me.  I had my chemo at a small hospital here and then have to go to a bigger cancer clinic for my radiation.  I think part of it was not having to deal with the cancer stuff for a few weeks.  

    I was back at work for bit during chemo but just got to exhausted and nauseous the last two treatments.  I've been off since and trying to build my strength back up so I'm not run down to start the rads.  I think everyone is different and you have to do what feels right for you.  I want to go back during rads as it was really positive but I don't want to be totally exhausted every day.  I also have two kids (4 & 9) so I really have to think where I want to exert my energy.

    I still have a really dry mouth since chemo and that is driving me nuts.  I thought by now that would be gone. 

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

    tomato juice...where are you having your rads?  I'm having mine at the NYU Cancer Center on 34th Street. I'm having #8 today and haven't smelled any burning, yet. Since I'm naturally very fair skinned, I thought it might be a problem, but apparently it doesn't matter. Did you put anything on that has lanolin in it? I've been told that sheep/lamb smells very much like burning skin, and lanolin comes from sheep...so there's a possibility.

    Lauren, can you explain the boosts for us?  I know you're having some. 

    KristyAnn, the rads are trying in their own way. But the difference between them and the chemo is more a matter of logistics. Having to go for the rads every weekday for six weeks is going to be my biggest challenge. I'm working fulltime and just leave a little early in the afternoon to make my appointment. I guess it will just be becoming routine feeling about the time they will end. There's no sick side effects like with chemo...no bad taste in my mouth...and my hair's growing back. But I will probably have to take work home with me a few nights in order to keep up. How are you scheduling things?

    Jane, from my understanding, as Lauren says the autologous flap methods (TRAM, DIEP,SGAP IGAP) are all still possible for most women after radiation. The areas of the body that donate the needed skin, fat, and muscle aren't part of the radiated area so they don't have the same concerns as trying to stretch radiated chest muscle with an expander would. (If you're very lean, it might be a problem, though.) Definitely seek out a second opinion from a dr who is an expert in one of those methods.

    Roberta, I'm having that dry mouth, too. I've found chewing gum seems to help.

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  • tomatojuice
    tomatojuice Member Posts: 382
    edited September 2008

    Hi Roberta I had alot of dry mouth from chemo. I found sucking on peppermints really helped alot. You know like the ones that come in little tins(deltoids, or neumans own organics).

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  • revkat
    revkat Member Posts: 763
    edited September 2008

    I finished rads a week ago and just wanted to say to tomatojuice that while it was physically sooooo much easier than chemo, the first week of rads was, for me, much harder emotionally. I had to focus on breathing and relaxing, because the only thing that kept me from jumping off the table and running out was the thought of accidentally radiating some other part of my body! (Like my nose or something). And I am/was firmly convinced that rads were an important and necessary part of my treatment so my reaction didn't make sense, it just was.

    There's just something weird about being alone with that machine. It did get easier after that first week to make myself go. And the techs were always so nice and encouraging. I didn't have any burning until the last week and then during boosts. By now the un-boosted part of my skin is normal (but tan) and the boost area has started healing up well. I have felt more tired this past week than any time during rads, but I think that has to do with the whole "finishing treatment" emotional changes.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Nancy,

     I originally tried to get my appointments at 8 AM and wanted to go on my way to work but they did not have any openings between 8 - 9:30 AM so I am starting with a 2:50 PM time slot. After talking to my boss (who is wonderful)- we decided that was probably better since mornings I have to check on several computer programs that run during the night time. My plan is to work 8-2:30 and leave for radiation- just eat at my desk etc and not take a long break- whatever is unfinished goes home with me- which will be normal for Tues and Wed. I am an IT person for the HR group at my company and Tues and Wed are payroll processing days - I will probably work some on those evenings and not worry too much about the other nights unless there is a heavy workload.

    Kristy 

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

    KristyAnn - Thank goodness for understanding bosses! I normally work until 4:30, but during the rad treatments I will be leaving 3:45 - 4:00 to make a standing 4:15 appt. The center is just a 10 minute walk away. To offset that, I will get in a little early and work through, eating lunch at my desk, too. But like tonight, I may have to check my work email from home to see the status of some things that happened after I left today. Since we have flex hours and offices in other time zones, there might be email coming in for a few hours after I leave.

    Rad tx #8 down! Wow, I'm almost a third of the way through! Skin still holding up good. 

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

    Good Evening Ladies,

     Well I stopped the steroid cream and it feels much better. Redheadace1 - do you mean the steroid cream? The name is Betamethasone Dipropionate 0.05%.

    I paid for the Miaderm so I'm going to stick with it. I use the Aquaphor at night too. I'm somewhat sore but not pink yet. Me too seems the soreness comes and goes. I was told by the nurse too that skin tone has nothing to do with burning/blistering.

    KristyAnn -If you have the tattoos like I do the techs still put marker dots on top of them - after treatment they give me an alcohol pad to remove the dots - so no one is the wiser.

    Can't remember where I read this - to keep putting on your gels etc 2 weeks after treatments.

    Janloy - We all have those days - we know how you feel. Hugs!!!!!  

    TGIF (tomorrow) Smile

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  • LorenaB
    LorenaB Member Posts: 937
    edited September 2008

    Nancy, the boosts are radiation to just the scar area.  Instead of radiating the chest wall and remaining lymph nodes, I believe it is more superficial and meant to reduce risk of recurrence in/near the skin (someone please correct me if I am off-base).  I had 28 regular treatments, during which I was zapped three times in three different areas -- underneath where my breast was, under the arm, and the superclavicular region where there are lymph nodes that weren't removed in surgery.  Those three areas are very sore and red now.  Monday was my last regular tx.  Starting Tuesday, they have just been zapping me once right in the middle of my chest, with a bolus (sp?) to increase skin coverage I think.  So far I'm not red at all in that area, just a bit tan. 

    I had two tx today and tomorrow a.m. I will be DONE - hooray!!!!  The skin reaction really just started to bother me last week -- it's been pretty uncomfortable this week but it's certainly bearable.  Today I was soooo tired, I felt like I pulled an all-nighter but I actually slept 7+ hours last night.  Tomorrow I'm working from home so I should be able to rest more.  Saturday I'm driving 3+ hours to NYwith my son -- we have a family wedding to go to on Sunday.  So, as you can tell, I'm functioning pretty normally even at this point, which is supposedly the hardest part of rads.  I feel pretty lucky that I've tolerated it so well.

    I hope all of you are lucky as well!  :-)

     Lauren

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Hi Ladies: Lots of good information.

    Lauren, my reconstruction information has not come from the plastic surgeon. I have an appointment with him on the 29th. I was going to cancel since they told me I cannot even consider it for another 7 or 8 months but I think I'll go just go I have a clearer understanding of my options.

    TomatoeJuice: I'm with you. I'm just tired of cancer and its treatment being the center of my life for the last 7-8 months. I'm ready for it to be over and I'm really not close. Hopefully finish rad's in November. Keep up with Herceptin till June and God willing have reconstruction sometime next summer.

    Still struggeling with what to do about work. I'm about 40 minutes away from University of Michigan where I receive treatment. Work is 40 minutes in the other direction. I have my simulation today. Wish me luck. I don't want to go. I don't want to do this. I'm taking all of you with me in spirit because I just cannot do it alone. I think I'm going to need some help getting through this. I guess I should look into that. Everyone thinks I'm so strong and so tough. Guess what? I'm not.

    Jane

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

    Jane don't cancel. Sometimes, PS's get so booked (especially if they are really good ones), that you might have trouble getting to see him down the road, so better to start a relationship with him now and get some answers to your questions.

    And we're with you, too. Here's something that helped a friend who was going through a difficult divorce. When she had to go to court and see her ex, she would write the names of her divorce support friends on the palm of her hand and draw a heart around them. She said it really helped because more than other friends, we knew what she was going through.

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  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2008

    Lauren - you are correct about the boosts - I'm having those at the end too and that's what I was told - just more intense treatment to the incision or breast area - I was told that the primary concern for someone like me is of the cancer reacurring in the chest wall - sooooo they want to make extra sure that any stray cells are "zapped".     Congrats on being done!!!!

    Jane - I just called today to get an appointment with a PS - I know there is nothing they can do for a while but I just wanted to see what I will be able to consider - what my options are - I like being prepared and see no reason NOT to go ahead and find out.    Remember this - just because you TALK to a PS doesn't mean you have to use him/her.    You need to really research PS - find out how many of the  procedure you will have done THEY have done - etc before choosing them.  

    TomatoJuice - when I started chemo - I thought my husband was going to have to PUSH me through the door of the clinic - LITERALLY!!   There was something so foreign and so NOT RIGHT about going in there - ya know?   Even now - when I have to see the Onc. there I have to take a deep breath before I enter.    Radiation was different for me - I was ok going to the clinic but then when I got on the table - that was sooooooo lonely - it all hits you WHAT you are doing there - what is going on and the severity of it all.   After 15 treatments I still get that feeling - even though the techs are sweet as they can be - make me feel comfortable, etc.    Hang in there - it is passing quickly for me.

    Lorena - Congrats on being finished - please let us know if you start healing right away - I have heard that sometimes the effects take a while to go away.    I am so hopeful my skin will do well through this - so far so good - no redness at all - using only Aloe Vera gel.

    Everyone have a nice weekend - talk to you next week.     Stephanie

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    Well I'm pretty mad right now to find out today that because my file ended up in the wrong cancer center my treatment will be delayed by two weeks.  I figured because someone obviously made a human error that they would do what it took to rectify the situation.  I was told by my oncologist that I would start on the 15th and unfortunately he is away this week so I can't even get any answers.  I know it might not seem a big deal to some but I just really want to get on with this treatment stuff and get back to having a somewhat normal life without appointments.  After 18 weeks of chemo and then having to wait an additional 5 weeks to start radiation it is just taking way more time than it should. Plus the oncologist assured me that they would work around my schedule and when I went for my CT simulation they told me they need a 4 hour time frame to work with.  I really don't want to hang around for a couple of hours after work to get treatment.  I'm an hours drive from both work and treatment so going home isn't even an option.

     Okay I think I feel better now?? 

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Rose47 - I dont have tatoos just all the sharpie marks and some plant based dye. I am allergic to cobalt which is usually in tatoo dye so rather than try to determine whether it was in the dye at the center, the rad doc decided that I would not be tatooed.

    Hurricane Ike is headed our way- I live in East Texas so we will be a ways inland but it is still expected to be a stormy weekend. As long as the power does not go out, I am going to cook- probably bake- put it in the freezer for those rads weeks. CREAM the sugar, BEAT the eggs, WHIP the butter- it is definite cancer stress relief and my kids enjoy the lowering of my stress level!

    Kristy

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