Fall 2013 Rads

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  • carla53
    carla53 Member Posts: 264
    edited September 2013

    CarkaK -There are some nice areas around Sacramento. Actually there are a lot of beautiful and nice places in California. Take care.



    Carla

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  • lpc
    lpc Member Posts: 303
    edited September 2013

    Off to simulation this morning. Woke up with sinus headache and full ears. Hopefully will be able to see PA when I go for bloodwork and port flush later this afternoon.



    Lisa

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  • lpc
    lpc Member Posts: 303
    edited September 2013

    Lisasp



    Hit submit too fast. Where are you in Maryland?

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  • Mermaidia
    Mermaidia Member Posts: 18
    edited September 2013

    I start rads tomorrow, not sure how many exactly the ro said 5 1/2 weeks....  I'm a little nervous, but not as much as when I was starting chemo.  The thing I'm the most unhappy about it that my ps said he wants to wait a year after rads to finish my reconstruction.  I have in TE and it's full but he says to wait a year until he switches it out.  Has anyone else been told that?

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  • LisaSp
    LisaSp Member Posts: 253
    edited September 2013

    Lisa: I live in Germantown but my treatment team is in Bethesda at Suburban Hospital. Where are you?



    Hope your simulation went well!

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  • carla53
    carla53 Member Posts: 264
    edited September 2013

    Mermaidia-my RO said to wait 6 months before finishing reconstruction. I was surprised even with that. It had sounded like my PS was thinking a couple months after radiation. The RO said that if I completed to soon it could shift up to about 6 months and what started out to be a beauty could get distorted. Haven't heard of waiting for a full year.



    Carla

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  • LisaSp
    LisaSp Member Posts: 253
    edited September 2013

    Mermaidia: When I went in for a consult with my PS about reconstruction for the large 'divot' left from my lumpectomy, he said he would wait a year after rads also. He explained that the final SEs often do not show up for a year. Not everyone can have them, but they can including lumpiness (peau d'orange is the term he used) and further skin tightening.



    He felt doing surgery before can potentially be premature. He has 27 years of cancer related reconstruction experience and I really trust him.

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  • lpc
    lpc Member Posts: 303
    edited September 2013

    Lisa I am in sykesville and go to Sinai for tx. Simulation went well. I will start rads on Sept 24th. Will have 28 treatments. Still tired from chemo expecting rads to add to the fatigue. Blah!



    Lisa

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  • canuck46
    canuck46 Member Posts: 93
    edited September 2013

    I saw my RO yesterday and had my mapping and got my "tatts" (Who ever thought I'd get tattoos - LOL!)  She also said no reconstruction for 1 year after RADS,  I have my simulation on Sept. 30th then 1st Rad on Oct. 1st.  Very nervous about all this but reading everyones comments and helpful hints has been helping.  Good luck to all starting now.  You are all in my thoughts.  Hugs, M

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  • Mermaidia
    Mermaidia Member Posts: 18
    edited September 2013

    Thanks LisaSp and Carla53.  I've been told that my ps is very conservative, but also he's very well known in our area and has a great reputation so I figured he was right...just don't like having to wait.  It's so weird to be lopsided...I will be having the other breast done too, just have to see when.

    Today is my first rads...trying not to be too nervous.

    I hope everyone has a great day!!

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited September 2013

    I had my first rads today. I have been given Radiaderm as my cream. It has a cooling gel and then lotion.

    Has everyone been told not to use antiperspirant? I was not told this and forgot to ask this morning if it was OK. I just didn't use any to be safe.

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  • lpc
    lpc Member Posts: 303
    edited September 2013

    Twohobbies my ro said I can use deoderant just not to put on thickly and not right before appt. I will be going after work so deoderant is a must for me. Ro said she doesn't like stinky patients lol

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  • Jo6202
    Jo6202 Member Posts: 372
    edited September 2013

    Two hobbies,

    Met with RO for the first time today and he said no deodorant and no shaving underarm on side receiving radiation. He said there are two herbal deodorants that are expensive

    that can be purchased from pharmacy. One is called Alra and the other is called Crystal. He said I could also use cornstarch under the arm and under the breast to absorb perspiration.

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  • Fephna
    Fephna Member Posts: 55
    edited September 2013

    I have my simulation 9/23 then tx the next day. Mapping was done 8/29. I've had to wait longer for the incisions to heal more. On my last appt with ro she said I can't use anything on my left. No creams, lotions, cool packs and no deodorant. She said I could get an all natural deo but not to use it 2 hours before or 2 hours after tx. I tried it and it did not work well at all for me. She said I could shave but with an electric razor which I have been since snb incision closed. The skin under my arm is still numb. I've been reading so much about rads and some ro will let you use some sorta lotion to keep skin moisturized. I'm worried cause I have very sensitive skin. I was hoping to use vit e on the scars but seems like its gonna have to wait till tx is over.

    Hugs :)

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  • cider8
    cider8 Member Posts: 832
    edited September 2013

    This sounds weird, but Milk of Magnesia works as a deodorant. It was recommended to me on this message board when nothing worked after my BMX and right ALND. I just smooth on a layer of the liquid. The People's Pharmacy has some info on this.



    Anyone going into rads with a seroma? I had surgery almost a month ago and pulled my drain a few days ago. My surgeon says hopefully the body will absorb. I'm more concerned what my RO thinks of it. I have simulation next week but I will probably email him tomorrow.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited September 2013

    Hi ladies,  I got this quote (below)  from the ACS Web site.  I think the question that you may want to ask your RO or the techs is exactly when you cannot use lotions, powders, deodorants and antiperspirants and are there any products that you need to avoid altoghether.  It would also matter if you are having radiation to the axilla.  My RO wants me to use fragrance free soap, no direct spray of water on the affected breast, no deodorant or shaving, and only aquaphor on the breast/axilla and aquaphor only after the radiation treatment, not before.  Luckily I have my treatment at 7:30AM, so I shower at home, then I moisturize and "grease up" after my treatment and also at bedtime.  When I met with my RO, he said that it wasn't necessary and not necessarily helpful to use aquaphor until I start seeing skin changes.  But even though it probably won't help....I am still lubing up.  Had treatment # 9/34 today.  Still no skin or breast changes.  Unfortunately it seems all RO's are different.

    "Lotions, powders, deodorants, and antiperspirants can interfere with external beam radiation therapy, so your health care team may tell you not to use them until treatments are complete."

    Sandra

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  • karibari
    karibari Member Posts: 12
    edited September 2013

    Hello Ladies - Thank you for starting this thread - I was looking for it when I finished chemo in August... I have my simulation Monday and then start radiation 1 October.  Looks like I need to order some aloe without alcohol and aquaphor since my skin is very sensitive all over (got blisters from the adhesive bandages after my partial mastectomy). So thankful to read the tips and suggestions from you all!

    I'm worried about fatigue like some of you - I'm already so tired from the chemo and usually take a morning and afternoon nap.  I work full time & live alone so keeping up with chores has been tough!  Thank you all for your courage and honesty - I couldn't make it through this without you!

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  • LisaSp
    LisaSp Member Posts: 253
    edited September 2013

    Had my initial meeting with the RO and she was all for lotions and agrees with emu oil. She said that fatigue is mild; particularly for her pts that have had chemo because they are getting better from chemo and generally fatigue is much less with rads. I have my simulation Nov. 1. All ready to be done with chemo and onto the next phase!

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  • canuck46
    canuck46 Member Posts: 93
    edited September 2013

    TwoHobbies- my RO said deodorant fine at least 2 hours prior to RAD.  She said I could use any kind I prefer.

    Karibari- We start Rads same date.  I also got rash from adhesive and am worried about skin reactions.  We will be in each others pockets thru this.  Hugs, M

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  • encyclias
    encyclias Member Posts: 302
    edited September 2013

    cider, I went into rads in June with a seroma from my LX in April. Didn't seem to do any damage; the seroma was slowly being absorbed both before and through rads.  Much smaller now, hope to see it gone by the New Year.

    Good luck,

    Carol

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  • graceforme
    graceforme Member Posts: 70
    edited September 2013

    Hello ladies, I had 21/33 today and the fatigue seems to be improving some and just starting to "tan". The lindi skin cooling pad has been very helpful in cooling and soothing the skin. Using miaderm during the day and emu oil at night.

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  • cider8
    cider8 Member Posts: 832
    edited September 2013

    Thanks, Carol. Good to know.

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  • Mermaidia
    Mermaidia Member Posts: 18
    edited September 2013

    Hi all - hope everyone is doing well.  Heading off to 3/28 today - so far the worst part is that it takes about an hour each was just to get there.

    About deo and lotions...my ro said to use either alcohol free aloe or calendula cream (found in the homeopathic meds area).  Also recommended Tom's deo (no aluminum) and said I could use it whenever.  About lotions, I can use as long as it's soaked in and not glistening on the skin at time of treatment.

    I may have a seroma also...seeing my ps today to check it out...

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited September 2013

    Thanks all for your reply on the deodorant. I still forgot to ask but for now haven't needed it. I do rads early morning so its not a problem to forego using it before the treatment. I might want to use it after when I go back to work.



    It's good to hear that everyone seems to be doing ok so far.

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  • karibari
    karibari Member Posts: 12
    edited September 2013

    Canuck46 - thanks & hugs back!  I think I'm skin sensitive on the inside too since I got an unidentifiable port infection after round 4 of chemo.  The silver lining from that was it delayed round 5 a week (4 different antibiotics later), then they removed the port altogether & skipped round 6 of chemo.  I still have a huge vertical lump where the infection along the port tract was.  I told my surgeon he'd better double-check the ultrasound because it feels like somebody put a curling iron in there - Tongue Out  I'm hoping radiation therapy is less eventful for my skin.  It puts my mind at ease to read that those a couple weeks ahead of us are doing well so far.  Yay!!

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  • vwbordelon
    vwbordelon Member Posts: 58
    edited September 2013

    Hi Ladies,

    Finished 9/28 today.  So glad to be in the "teens" (19 left).  The tech's there are great - I am in and out in 20 minutes.  Using my lotions/oils religiously and no problems so far.  My RO is not doing a boost on me - is this unusual?  He says becuase I was on the edge of needing rads and that I want reconstruction, the cost/benefit was not worth it.  My PS says he can do reconstruction 2 months after I finish rads.  That really surprised me.  I am going to meet with MO on Wednesday and see what his opinion is.  Also, wondering if any others are experiencing "social" anxiety.  I have always been a VERY outgoing person, and since my diagnosis I prefer to stay home in my "cocoon" and suprise company throws me off!  I started a mild anti-depressant 2 months ago and it has helped with the emotions without really changing my personality.  Just hope that once I have hair maybe I won't feel as anxious about being around non-family members. 

    Hope everyone has a great weekend!

    Geaux Tigers!!!!!!!!!!

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited September 2013

    Hi vwbordelon,   I am having 28 regular treatments and 6 boosts for a total of 34 treatments.  I had a lumpectomy and the boost is targeted to the tumor bed.  I am not sure where they direct the boost with mastectomy though.  Maybe one of the other ladies can help with that.

    As far as social anxiety goes....I have referred to it as PTSD and maybe we all call it by something different and it manifests itself differently for each of us.   I think it is fair to say that being in treatment forces us to be at home more, and the various chemicals that we are taking pretty much take a toll on our personality.  Bundle that all with the shock of the diagnosis and the awareness that our lives have changed.  I know my personality has changed and I have decided to get through my treatment and heal physically, before I decide if I like the new me.   Love yourself!!

    Sandra

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  • graceforme
    graceforme Member Posts: 70
    edited September 2013

    Hi ladies. I had 24/33 today. My skin looks red and feels tight & hot. My fatigue is getting worse. My last 5 treatments will be boosts to my mastectomy scar.



    I definitely have social anxiety. I'm very self conscious of my appearance and don't care to be around anyone besides close family. I hope it gets better. I can't imagine being like this forever.

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  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited September 2013

    Can I jump on this train too? I read through the whole thread today. Thank you all for starting it and getting it off and running. Everyone on these boards has something valuable to offer that helps someone else.



    I had my mapping yesterday. No tattoos but they drew all over me. Has anyone had a custom Bolus made? It is like a cast for my Foob! I told them in the end I wanted everyone to sign it for me! I do the dry run and first treatment on 9/30.



    My RO approved my fills before radiation so that we expanded while skin was more pliable instead of after cooking. Had my left prophy MX a couple days ago and that one I can't fill much until after rads so it doesn't get in the way!



    My doc and lymphedema prevention therapist say Miaderm is good but mainly recommended Life Flo melatonin cream That you can get from amazon. Mine came today. It is supposedmto be very similar to something they use in Germany with very good results. Of course not FDA approved here yet! They also give aloe gel. Therapist said a good trick is to take an old t-shirt or soft cotton flannel, soak it in aloe gel or juice and drape it on. No rubbing that way if you are already sore. For some reason they don't do Aquaphor because they said it is petroleum based.



    It amazes me how different all the docs protocols are?



    My PS said I could do my swap in 4-6 weeks if everything goes smoothly. Today they scheduled that for 12/30 so I can get in on this years already maxed out out of pocket insurance! Very thankful for that.



    Some ladies on another thread I follow have been very happy with Deodomom deodorant. I have tried a couple of organic aluminum free type ones and don't like them at all. Going to look into some of the suggestions here.



    I think that covers most everything you brave ladies have been discussing. Mthanks for all the great hints, tips and updates. We will all be on the other side of this in no time? Thanks for letting me jump on for the ride :0)



    Hope you all have a great weekend!

    Lynne

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  • tuffenough
    tuffenough Member Posts: 13
    edited September 2013

    Hello Ladies!

    I don't know when I'll start rads, but wanted to review some posts on this thread beforehand.  I had my lumpectomy on 9-9 and am healing well.  I have my post-op appointment with the surgeon on 9-25.  I am assuming I'll get more info from him then.

    fiddledeede... looks like we're on the same timeframe in all this!  Hope all goes well for you!

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