March 2011 Rads

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  • pumela115
    pumela115 Member Posts: 231
    edited March 2011

    Lestwin yay for you!!! I can't wait to be done. Lucky number 13 today and it's hurting under my arm. I also am soooooo tired, i can hardly keep my eyes open to type this. Thanks for listening to me whine. Hope everyone is doing well this evening. It's nap time for me, again!

                                             Pam

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  • Maureen813
    Maureen813 Member Posts: 2,893
    edited March 2011

    Congrads to ladies finishing their rads.  I'm suppose to start rads on Monday March 22nd however the office just called and I have a question:

      Suppose to do dry run for rads on Monday.  Get a call 1st thing this AM from rads place.  They want to do x=rays and diagnostic CAT scan because of the results of the routine CAT scan.  They won't provide anymore information,  my first question was, did you find something?  They replied, we're on a fact finding mission.  What the hell does that mean?  I kept questioning them but doc is off today, have no further information, etc....  My first thought: they found something, my second thought, they want to differentiate good from bad of what they found, my third thought, this is a problem.  Any of the above is freaking me out.   Need help here, has anyone had a dx. CAT vs. routine before rads? 

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  • libraylil
    libraylil Member Posts: 528
    edited March 2011

    River cat. I too am working through rads. The only time I have really bad was the day of rads and herceptin. I do come home after the rads and nap. I'm only up to 6 however. I had neoadjuvant chemotherapy and finished around thanksgiving,then lumpectomy. Never dawned on me but most of you are going from chemotherapy to rads. My body had several months to heal. Cannot imagine going from chemotherapy to the everyday rads. We can do this! Libraylil

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  • kal_1865
    kal_1865 Member Posts: 176
    edited March 2011
    Maureen813 I had my consult on the 9th, simulation on the 16th and now waiting for the date of my dry run.  They would not even see me for the consult without a PETscan.  I had not had any scans/tests since before my surgery so I'm sure the RO just wanted to check my status.  At least this confirmed that a suspicious cyst on my t-spine was b9.  I know they told me that they would be monitoring the progress of the rads with x-ray and CTscans.  Was your "routine" CT originally scheduled by the RO or a result of other treatment?
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  • Maureen813
    Maureen813 Member Posts: 2,893
    edited March 2011

    Original "routine CT" was scheduled by the RO.  I had all the scans done before my chemo started and had B9 cysts and DJD in joints.  That's why I'm worried.  Were they not B9?  Sorry to rant, just sick of every light at the end of the tunnel being an on coming train :(

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  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    Libralil - I came off chemo Feb 2 and started rads Mar 2.  It's not too bad.  I had such a hard time with chemo that rads is a relief and seems so easy (does that sound crazy??).  I actually like that it forces me to get up, dressed and out of the house everyday.  So far so good, very little skin reaction if any.

    I noticed this week that I am pretty wiped out when I have Herceptin and rads .... I slept all afternoon, then fell asleep for over an hour after supper as well ... and still slept thru the night!

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  • libraylil
    libraylil Member Posts: 528
    edited March 2011

    Marjie. Ok at least i know I am not crazy. First herceptin/rad did same as you. came home and slept hard for a couple of hours. Tough to wake up libraylil

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  • LovemyLife12
    LovemyLife12 Member Posts: 43
    edited March 2011

    Maureen813- Don't know what to tell you.  I would feel the same as you. Hopefully it is nothing. I had a PT scan before I started rads (which showed a luteal cyst on my ovary)  It was B9, but that did not stop me from worrying until the US proved it.  Will be thinking of you..Can you ask to see another Dr.  The PAs and Docs keep reminding me "we are here for you"

    Marjie- I'm pretty wiped out too.  I could sleep all day I feel like.  But I do feel better if I have plans.  I am a stay at home mom.  So I try to plan things to do a couple of hours before dd gets out of school. 

    Hope everyone has a great weekend.  Today I made it over the "hump/halfway" mark. 

    18/35 DONE!!!!

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited March 2011

    Maureen813: Waiting is our own personal hell.  I don't think there is anything anyone can say until you hear from the docs.  The techs can't say anything and won't say anything. Just know and believe that they are doing it for the right reasons.  Currently I have to wait to discuss the results of an ultrasound that found a complex cyst on my ovary.  And of course my research has lead me down the path that I may have another cancer.  Blech!  My appt with the specialist is 25th.  And after I meet I'm probably going to have to wait for the results of tests or surgery.  I know the fact that I am waiting too is in no way a prize to you, but maybe it will bring you some consolation. There's someone else in your miserable boat.  I think they should call this process of cancer the "Hurry Up and Wait" Game.  Sometimes I feel like someone is testing me to see how deep or how shallow or how non existing my breathing is and how my heart responds to my breathing.  The only way I've found to cope with the waiting is that I think there is a portion of my brain that takes over so that I am comfortable with being a lunatic.  So breathe deep.  I wish I could say something prophetic like "live each day like it was your last" and have it actually mean something to you, but F that!  Live for tomorrow so you can find out what the F is going on and then Kick Its A$$!

    15/33!!!!! I just woke up from a nap and I'm feeling feisty!

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  • Maureen813
    Maureen813 Member Posts: 2,893
    edited March 2011

    Thanks, for talking me down off the ledge and you ladies are right, monday will come soon enough.

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  • thrmine
    thrmine Member Posts: 98
    edited March 2011

    Hey Herceptin gals, your scaring me, not a lot, just a little.  My Herceptin day is next Wed.  7:40am rads, 8am Herceptin, 9am RO appt.  yippee.

    Finished chemo in November, "black Friday" to be exact and I too loved the break I got in February.

    I had big skin issues on Lapatinib with chemo, so I was very glad to put distance between chemo and rads.   I must say, I am really not liking rads because I am so concerned about the lymphedema starting in my arm.  Will be soooo glad to have this milestone behind me. 

    9/33 done today.  No redness etc.  TGIF for real. 

    Have a good weekend all. 

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  • shooshoo23
    shooshoo23 Member Posts: 96
    edited March 2011

    One week down! Five and a half more to go!

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  • libraylil
    libraylil Member Posts: 528
    edited March 2011
    thrmine   the Herceptin/Rad dual happy hour just made me tired that afternoon.. Probably because I had to leave work at lunch to get the Rad that day then Herceptin in the afternoon. Personally, I love Herceptin and what it does, but the smell after reminds me of chemo.  I was fine the next day.  Probably just me trying to milk it when DH came home.  Also I am trying to lose weight so I did not avail myself of the infusion center snacks.  Next time I'm going to make sure I something on my tummy.  You are 2 rads ahead of me...whoopee! (I call it the radium spa) My regular dr was on vaca this week so I saw another RO.  He was cute and very nice, but a little GQ "pretty" for me.     libraylil
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  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    Herceptin/Rad Dual Happy Hour  - LOL Love it Wink

    After all I have been thru I can definitely deal with one tired day for sure!  Herceptin has been no problem so far - an extra nap never hurt anything.

    thrmine - how many nodes did you have removed?  I only had two out with SNB and my RO assured me today that I would have no problems at all.  Gotta say though that one of the ladies on my dragon boat team only had 3 out and has to wear a sleeve because of lymphedema.

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  • Lee7
    Lee7 Member Posts: 657
    edited March 2011

    First week done....Yay

    Hope everyone has a good weekend!!!

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  • GrandmaBubba
    GrandmaBubba Member Posts: 111
    edited March 2011

    11/28 Three more and I'll be at the half way mark. I've worked through this whole process except after surgery (mandatory to be off). This is actually harder for me than chemo was. Now it could be the weather. I did chemo last summer. Maybe the surgery took more out of me than I thought. If I don't or can't sleep when I need to I really regret it the next day. DH is great, but starting a new business and very busy. Good thing is if the business does good I'll be able to be a stay at home Grandma and that would be great. Poor guy had to take the kids to Lowes with him tonight because I came home and straight to bed. I have to learn to take better care of myself. Whole life has been about taking care of others. Can I get an amen? :)

    I named my machine this week - Burnie. The tech liked it. Today was the first time my foob was really painful after rads. Glad its Friday.

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  • Angelice
    Angelice Member Posts: 1,739
    edited March 2011

    hello ladies, i also starting this march on the 23rd Wednesday, my first rads i have 33 /  6 weeks hope it will be easier than chemo  good luck to you all too :)

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  • shooshoo23
    shooshoo23 Member Posts: 96
    edited March 2011
    Amen GrandmaBubba!! That's been one of the hardest parts of all of this. My boys are 15 and 10 and it kills me that I can't be the fun, energetic mom who takes care of everything! I'm usually the go to person at work if anyone needs anything and everyone's been leaving me alone :(  When I do things for myself I feel guilty too.  It's a learning process I guess.
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  • GirlFriday
    GirlFriday Member Posts: 461
    edited March 2011

    Had a long talk with my rads nurse last night.  There's an herbalist in Maine that makes a salve for radiation treatments.  She was inspired through her sister's struggle.  We went over the list of ingredients, and then he said...There is no science to support that what you put on your skin protects you from the radiation.  Your skin is going to react the way it's going to react.  You can't stop it, but you can make yourself burn worse by what you put on it.  Absolutely no lanolin ever, and no oils...So in other words nothing helps you heal, but something can help you burn.  He said they recommend 100% aloe because it doesn't have oils or alcohol that will hurt your skin.  And it helps to soothe what's been burnt, but it won't heal it. Only time heals it.  He said "Always come in with clean skin, and you will limit skin burns"  He did say in his twelve years the worst burns he ever saw were on a man being treated for throat cancer, and the man was using emu oil.  He's read how much people believe it helps, but he said he would never ever recommend it. 

    I'm not sure whether this is consoling or frustrating, but I thought I'd contribute it to the group process.

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  • sjames59
    sjames59 Member Posts: 22
    edited March 2011
    I've been reading this forum but usually post on the Feb 2011 forum since I started txs last month, but it's pretty quiet over there these days. I've completed 22 out of 26 whole breast rads... lots of red, soreness, itching & burning, but skin is still holding up o.k. The RO Nurse started me on saline soaks a few weeks ago, and they really help to draw the heat out. I will start the boosts on Friday, and REALLY hope that gives the rest of the breast some respite. Did the sim for them this week and got two new tattoos... the one on the shoulder blade really HURT!!! I'm working part-time from home now, which is a big help in dealing with the fatigue and skin care.
     
    GrandmaBubba, Burnie, that's hilarious!
     
    GirlFriday, yikes - I have been using the emu oil periodically but maybe will just use on Friday/Sat when it will be all gone before next tx on Monday. I also use the 100% aloe but don't like the way it makes my cotton tank top stick to my skin when it dries. I tend to alternate with calendula gel, calendula cream, and Miaderm... just depends on what sounds the most helpful at the moment.  And of course globs of aquaphor on the very tender, sore, and irritated nipple :-(

    Happy Weekend!

    Sharon
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  • shooshoo23
    shooshoo23 Member Posts: 96
    edited March 2011

    Ok ladies, I have a question. I've been using aloe and aquaphor which my RO told me to use. After reading these posts I looked at the igredients in aquaphor and it contains lanolin alchohol?!?!?! Of course that was after I already put it on today. The aquaphor actually feels better than the aloe. But I guess I should stop using it? Why would my RO suggest it? Freaking out!!

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  • sandymess
    sandymess Member Posts: 299
    edited March 2011

    shooshoo: My RO recommends Aquaphor and/or Aloe Vera--even gave me some Aquaphor samples. I have been unable to find Aloe that has no dye or fragrance in it, which is what was specified. They did tell me not to put anything on within 3 hours of a rads tx. It can all be so overwhelming and confusing, can't it?



    girlfriday: Where did you find your Aloe? Is it dye and fragrance free? Also, I read the label on the baby Aveeno stuff and there is at least one type of paraben in it, so I didn't get it. Jeez, it's so hard figuring all this out.



    I've done 3 out of 33 as of yesterday! Couldn't sign in here because I couldn't remember my password! Chemo brain still?? I also still have lots of chills and hot flashes. My body seems to have no inner thermostat at the moment. And I am still so damned tired! I'm looking forward to June. By then all the SE's should be done and maybe I'll even have a little hair to style!



    Hope you're all having a wonderful weekend!

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  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    sandymess - Chemo brain, yes.  Chills, hot flashes, check.  Tired, yep.  Actually my hot flashes had settled down a bit but they have really ramped up in the last week or two, not only at night now but during the day as well.

    Have completed 13/33 and am noticing that my underarm looks nicely tanned.

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  • shooshoo23
    shooshoo23 Member Posts: 96
    edited March 2011
    sandymess- I got my aloe at CVS of all places! Dye free, fragrance free and alcohol free. I also got a couple of large aloe leaves or stalks at Fiesta. I don't know if you have Fiesta grocery stores where u are but they were only .88 and I know there's nothing artificial in them! I think I'm going to get some calendula too, It's crazy confusing!! I see my RO Monday so I'm going to ask about the lanolin alcohol in the aquaphor.
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  • libraylil
    libraylil Member Posts: 528
    edited March 2011

    Maureen the waiting is the worst! Ihad reexcision to get clean margins in feb. Was so glad,and surprised, that my bs called me with the results rather than having me wait for my appt. Of course I am also suspicious when they call me. BC makes ua suspicious. the RO wanted some fluid drained and my imagination ran away with me. Goes back to my mammo in July,called me back to redo,nothing of concern. wish they had just told me upfront there was an area of concern. I have found that the ROs are very anal and precise because they work with radiation. Now I pretty much overanalyze what they tell me and look everything up.







    Lotion. My RO gave me a script for Radia plex. Noticed it does contain lanolin. HE does not feel the aloe moisturizes enough. They are all so different, unless I have a problem, I will just stick with what Dr. cute recommends.



    Beautiful weather and thanks to all for your positives as I have number 7 under my belt. Lib ray lil





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  • GirlFriday
    GirlFriday Member Posts: 461
    edited March 2011

    It is all so confusing. I asked the RO on duty about the lanolin alcohol a week ago...and he said, yes but it's a very small amount.  (He's also creepy and has weird eyes, it's like he's stoned all of the time)  I haven't seen my actual RO since the first appointment. She's at a different facility, but I couldn't get a morning time at that facility, so I'm at the main hospital.  She was all about aloe at the beginning and aquaphor in the later stages.  She's also a melanoma survivor, so I give her words more credence. 

    After all of the posts, and all of the advice here's what I think it all comes down to:  Use what you like...aquaphor is Petrolateum:  which traps moisture in...Glycerine: (which is also an oil)  draws moisture out of the skin.  We're probably better off with Petro products than glycerine products.  Aloe is great because it is neither, and has no fragrance.  It's cool and it soothes.  The most important part is don't have anything on your skin at the appointment.  My RO said 4 hours. I would err to the side of caution...My appointment is 730am so I shower and go, and then lube after.  I would think the aloe would be the safest if you have several hours before your appointment.

     I"m putting aloe 3-5 times a day...because mentally it just makes me feel better...and it's the oral supplement not the Fruit of the Earth gel ( I put that one after my appointment).  I don't know that it does a thing for me physically but at 15/33 my nip is burning! At night I use the generic baby aveeno (Equate brand) and it didn't have paraben's in it...I read the labels of everything on the shelf at walmart until my eyes were bleeding. 

    Obviously this is all what I do, and what makes me feel better.  I don't have the science to back it up, and I don't know what is really right!  It's just what I've watered down from all the advice to be my routine.  I'm looking for the Boiron calendula products but no one in my area seams to carry them.  And I want to re-state, this is what makes me feel better in MY world of crazy...because it's all about me...and it's all about you, but not unless it's all about me. :D  And I think this place is great because I get to hear about when it's all about all of YOU and then my kind of crazy just seems a lil bit more normal.

    In summary, go in clean and then lube, lube. lube lube! :)

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  • sandymess
    sandymess Member Posts: 299
    edited March 2011

    GirlFriday: I have to tell you I enjoy reading your posts. You have a very down-to-earth writing style with lots of humor--not crazy, at all! (Not in my mind, anyway.) You also have lots of good advice, grasshopper!! ;)

    I think we all just have to figure out what works or is right for our own bodies. It sounds like there is no tried and true lotion or cream. Otherwise, we'd all be hearing the same thing from our ROs, nurses and techs. All I know is, I don't want to burn! And you are right, go in clean and lube, lube, LUBE! 

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  • Maureen813
    Maureen813 Member Posts: 2,893
    edited March 2011

    Has anyone on this thread received a CAT scan at start of treatment then a CAT with dye prior to starting radiation?

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited March 2011
    Maureen813: Wish I could direct you to someone, but I can't think of anyone with this combo off of the top of my head...I do know that some have had CAT's throughout the process...just can't think of names.  Posting here is an excellent place to start the search for that question.  You could make your own post too!  Maybe some that have had this prior to Feb and March!
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  • Ween62
    Ween62 Member Posts: 10
    edited March 2011

    Hi All

    I look forward everyday to reading everyone's posts. It helps me get through the day. I am 15/15 halfway through YEAH! I wanted to share with all of you, on Friday my RO told me about a cream made by RO's for RO patients. its called Miaderm. I purchased a tube in the hospital pharmacy.I am in CT. I do not believe it is available in retail pharmacies. The 4oz tube cost me $25.00 but I didnt care. I purchased it right away, because I had alot of concern about "alcohol" being an ingredient in all of the creams suggested and hated the look of the Aqaphor. Miaderm does not contain any alcohol and a little goes along way. You can purcahse online from Miaderm.com or check with your local hospital pharmacy. Its not greasy at all. I dont typically post alot but as I said I look forward to seeing how all of you are doing and for your support and laughs every day. Know i think of all you each day and pray for the best for all!

    Lisa

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