July 2009 rads group

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  • MsDebS
    MsDebS Member Posts: 36
    edited July 2009

    Actually I meant to say 27 more to go.  By the way....any one in the Clodronate ( Bonefos) clinical trials?  I start this on Wednesday.  The Drs say it may help the cancer not to come back?

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  • Artemis
    Artemis Member Posts: 759
    edited July 2009

    LoriL ~ well, I said I'm not trying to lose weight, but that's not entirely true.  I was quite overweight and had started losing some before all this cancer mess hit in late December.  I'm not doing any particular diet; I just basically quit eating late at night, and the weight started coming off.  

    I believe that I'm still enough overweight that losing a few pounds in the next few weeks isn't going to hurt.  Of course, if the rad onc thinks otherwise, I'll see what I can do.  But until then, I'm not going to start eating peanut butter and jam sandwiches at midnight the way I used to just for the heck of it, lol.
    Tongue out

    I'm halfway finished with rads today ~ WooHoo!

    Hugs to all,
    Artemis

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    nwood, maybe see if you can get pure aloe vera gel. I use a brand called ESI that is imported to here from Italy, but I don't know if it's available in the US. I have seen women on other threads talk about one called Fruit of the Earth, so maybe you can get that. I also saw that some women will put a soft cotton handkerchief in betwwen the band of their bra and the skin so it won't get irritated.

    Zap #11 today. Two more treatments and then they start using the bolus. I asked why they do it that way instead of every other day throughout treatment, and the doc said they've found much less burning using it this way. Sure hope so.

    There is an organization here called Beit Natan, which offers all kinds of support for women with cancer. Yesterday they had their yearly one-day retreat, and it was terrific. I got there late because of the zap, but it was great to be able to go. Just spending the day with other women who are going through the same thing, or who did in the past, is extremely comforting. One of the workshops was on using movement in unusual ways, and it was SO MUCH FUN! The woman leading it and one other woman there both asked me if I danced. YES!! The question made me feel great because it was a reminder that I am still ME. I came home exhausted and I'm still tired today, but believe me it was worth it.

    Leah

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  • nanabolini
    nanabolini Member Posts: 61
    edited July 2009

    #13. The bc breast is swollen. Edema the doc calls it. Hmmm. Wondering if anyone else is having this.

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  • nwood450
    nwood450 Member Posts: 110
    edited July 2009

    nanabolini:  Just had rad #14.  Breast is pink and skin is breaking down in the crease.  It is swollen as well.  Doc called it "inflammation".  Said ibuprofen could help with pain and swelling.

    Leah:  Bought a cami today and placed a small piece of soft gauze under the sore area.,  The dancing sounds wonderful... That's a good kind of tired!

    Nancy 

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  • carollynn79
    carollynn79 Member Posts: 654
    edited July 2009

    I cut up an old soft cotton sweatshirt and place strips around my bra where it irritates or when braless place it in the crease under my breast.  It also works to put under your arm to keep the skin from touching.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    Forgot  to tell a funny story after the Beit Natan day. They gave each of us a small flowering plant as a gift at the end of the day. On my way home I stopped at the drugstore for more aloe vera, and put the plant on the counter as I was paying. The woman behind me read the little note on the pot, mentioned how nice it was (it said "We should pay attention to the flowers that bloom, not the leaves that fall" - I liked that thought) and asked what Beit Natan is. I told her "Support organization ffor women with cancer". She sidled away from me. Did she think it's catching?????

    Then on my way to the bus stop I gave some money to a beggar. She told me to keep the plant in the shade. I gave some money to another beggar, and she proceeded to give me detailed instructions on how to care for the plant. Who knew the beggar ladies in Jerusalem were all gardening experts?

    Leah

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  • CaliforniaKatie
    CaliforniaKatie Member Posts: 3
    edited July 2009

    Hi Ladies!

    I'm getting to the party here awfully late.  Tomorrow I'll have finished my 35, and will graduate.  Radiation was indeed easier than chemo, though I've been plenty tired and cranky.  Sometimes even whiny, and I hate whiny.  But rest assured that it is doable, and this too will pass.

    My doc recommended using aloe under Aquafor, which is one greasy combo so I used it only at night.  During the day I used Body Time's Vitamin A, D & E Extra-Rich Night Cream (actually a face cream) which really did a great job without ruining any clothes (http://www.bodytimeproducts.com/vitdandeexri.html).  Another hot tip:  shelf-bra camisoles.  You will thank yourself.

    Good luck to all. 

             

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  • Irishred
    Irishred Member Posts: 136
    edited July 2009

    Hey ladies,  Irishred back again.  I had my simulation today, Tuesday June 21 and will start radiation on thursday June 23.  Am really glad to get this going so it will be over sooner.  They gave me some Aquaphor samples, I tried some it sure is greasy (reminds me of A & D ointment I used on my kids diaper rash, lol)   I will look up everyones opinion on the best cream to use, But I am leaning toward a pure aloe vera gel.  They also told me I cant go swimming in the pool after I start, darn I will miss the pool this summer.  And I can only use an electric razor to shave the pits while on radiation (have to go buy one, havent used one since I was 13)  They also said to wear crappy tops to radiation, cause the marker ink can get all over everything,  so guess I will dig out the old soft tops stuck in the bottom of my drawer that I didnt wear anymore cause I was tired of them.  But hope all of you are doing well, will keep you posted on the progress.

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  • carollynn79
    carollynn79 Member Posts: 654
    edited July 2009
    I was really tired after treatment #7 today could be the rads or the thyroid issue that has crept up.  A friend will drive with me tomorrow the 4 hour round trip is tiring already and I have 26 to go.  After a nap picked gooseberries, cauliflower, and snap peas for dinner.  Froze most of the gooseberries to make crumbles in the winter.  Watered flowers and picked a beautiful bouquet for the house.  The flowers are really pretty right now.  Remember life is a rose garden, sometimes we get caught up in the "thorns" and forget about the beauty of the bloom. Hope everyone finds some highlights in everyday.  Cool  Does anyone know how to insert photos here?
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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    Irishred, good luck with your treatments. How is the other skin issue you were having (saw it on the other thread)? Hope you have NO ther skin issues.

    Carollyn, thank you for the thought about the roses.

    Hardly any wait today. I COULDN'T believe it. Sure hope it continues this way. Sunday starts (ominous music here - dun ta dun dun) using the bolus. So far no sking issues but I think with the bolus that will change.

    Leah

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  • nanabolini
    nanabolini Member Posts: 61
    edited July 2009

    Leah:  You said you're starting "bolus". What is bolus?

     nwood: Mine isn't sore, it's just big and gross looking.  I wouldn't worry about it if I thought it will clear up after rads.  I'm going to question the doc more closely next week.

    To all: Anyone have a problem with blood pressure during rads?  Mine is much higher since I started but doc insists it is not caused by rads. 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    nanabolini, a bolus is some sort of material (don't know what type yet as haven't seen it) used for rads after a mast to bring the rads up to the skin more since that's the most likely place for recurrence. Most places use it every other day but where I'm doing rads they use it instead every day for the second half of treatment. The onc told me they've found less burning that way. Sure hope so.

    Leah

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  • MsDebS
    MsDebS Member Posts: 36
    edited July 2009

    Hello everyone! Today is day 8.  I was in and out and back home in less than an hour.  Now that is service!  However I get no samples and actually no feedback.  One of the techs told me I might be tired come the last part of treatment but going to bed earlier would take care of it.  That was it.  Everything else I am learning from this site.  The camisole is great and I bought a sports bra that gives me support but doesnt seem to bother anything else.  Off to work now....have a great day!

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  • dkhancock1948
    dkhancock1948 Member Posts: 433
    edited July 2009

    Today will be #21 out of 33.  They have used the "bolus" since day 1 and have used it every day.  They move it, so they use it in two different positions.

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  • LoriL
    LoriL Member Posts: 185
    edited July 2009

    Leah,

    Being a gardener myself, I loved your story about the beggar ladies telling you how to care for your plant! :-) 

    I've been receiving the bolus every other day since I started 13 days ago, and so far so good. My skin has been just slightly pink since day 2 and hasn't really changed since then. The bolus material is a big pad of gel- I actually look forward to it as it feels nice and cool on my skin! Glad things are going more smoothly for you with the time issue. Yesterday I waited 40 minutes, which was unusual. Normally I'm in and out within 15 minutes of arriving.

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  • Irishred
    Irishred Member Posts: 136
    edited July 2009

    Leah,  my skin is still red, but somewhat lighter than before, no one seems to be able to come up with a good explanation.  It isnt sore like a sunburn, just red.  I am verifying , before rads, that I want to know for sure nothing was left inside me during surgery, (ie sponge) and that the marker they put in there at biopsy was removed during surgery.  Once that is verified , I will feel better about it.  Thanks again for all your good advice.

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  • carollynn79
    carollynn79 Member Posts: 654
    edited July 2009

    Irishred-  My breast stayed red after the lumpectomey on the inside part of the breast, they said it was from all the swelling and that is where the blood was pooling until it found its route out again.  It is getting better even with the rads. 

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  • LoriRR
    LoriRR Member Posts: 6
    edited July 2009

    I finally have it straight what kind of radiation treatment I am getting. I am not getting it twice a day-which I thought earlier. My Doctor said that is is the standard "Canadian" treatment. I am getting 16 treatments and 3 boosts all at a higher dose. I believe it replaces the 33-36 treatments? Is anyone else familar with this? Will I experience side effects quicker? Thanks for your help!

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  • O3132W
    O3132W Member Posts: 211
    edited July 2009

    LoriRR;     I also am getting the 3 week shortened plan.  I am scheduled for my simulation tuesday Aug. 4.  My Surgeon told me that this plan gets the same results as the 33-36 treatment plan.  Guess we both will see if it works for us.  Im a little nervous about the simulation and going in the scan  and holding still for so long.  I have some back problems and am afraid it will hurt me.  I try to compare this to what Ive already been through to calm me.  So far my Dx is not too bad.  Im very lucky and I know it.   Cathey

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  • Concierge5
    Concierge5 Member Posts: 3
    edited July 2009

     Hi Everyone,

      Is it to late to join this group? I just had my 3rd today. So far so good. When did you start to feel tired? if at all?

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    From what I understand, the shortened treatment plan gives the same amount of radiation over a shorter period of time - each treatment is a higher dose.

    I asked if I would be able to do it, but I'm getting too much radiation for it to be safe. I'm getting a total of 50 grey, so if it was divided into 15 treatments it would be more than 3 grey each treatment - too much for a body to deal with apparently. At least they did it in 25 treatments, 2 grey a day, since I told him about travelling time (I come from outside the city).

    Welcome Concierge. Hope your treatments go easily. The fatigue, like other side effects, is individual. I'm tired all the time now but don't seem to sleep more. I just have no energy. Which island are you on? I have an aunt who lives in Kauai and she says it's gorgeous there.

    I already had my zap today, so my weekend is starting. For me it's TGIT.

    Leah

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  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited July 2009

    Hi all!  I am doing # 22 today with 11 more to go(5 are boosts) so far my boob has turned red and under the arm is brown. Not a lot of irratation but I have been applying calendula tea after each radiation treatment and then follow that with aquaphor and in the evenings after a bath I slather on ALoe-Esta and it all appears to be working well. Burns a bit under the boob but so far not unbearable! I am having more fatigue...it hits fast and sudden but I feel better after a short nap.

    I have been very fortunate.. I live 4 mins from my cancer center and when I go in every day I just go right down to radiation, they give me a braclet and I go in and change.. go through to the other side and they are always waiting on me. Usually done in 5 mins unless it's my day to see the nurse practioner. I am very lucky to have had an awesome cancer team.. chemo.. radiation...naturapath... onco dr...the whole works.. they have all been great!!

    I'm sorry some of you have been experiencing problems....I can identify with the dizziness...mine is not extreme but I do feel it right after my treatment.. my head just feels "out of sorts".. kind of light headed but not too bad. Radiation is the last leg of my cancer treatment so I am hanging in there.. be glad to be done and back to normal living(whatever that is...LOL)

    Best of luck to all of you wherever you are in your treatments!! Hugs and Prayers

    ~Belinda~

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  • kim40
    kim40 Member Posts: 904
    edited July 2009

    LoriRR

    I am on the same treatment plan as you.  16 versus the 25 or 33.  We are receiving the same amount of radiation as the other two treatments, just in a shorter time.  The 16 treatments, I was told, is for women who have totally made up their mind on not having reconstruction, and I'm not, so I am fine with the 16.

    Going in for number 9 today.   All is good so far.  No tiredness, just a little red.  Will be over before we know it.

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  • O3132W
    O3132W Member Posts: 211
    edited July 2009

    kim40:  Could you please tell me about the simulation.  Was it hard to hold still and how long did it take?  How can they do the mapping on a breast that is not completely healed.  Mine is still a little sensitive and I cant imagine anyone touching it.  Thanks Cathey

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  • connette
    connette Member Posts: 33
    edited July 2009

    Hi Ladies,

    Concierge I just had my third radiation zap today, also.  I am staying with my son while I'm on radiation because my center is 2 1/2 hours away.  I'll go home on the weekends to visit my husband. . .just like college! 

    I don't post very often but I read the messages all the time.  I feel so close to all of you, because you are so wise and full of compassion.  Thank you for all of the ideas.  Connette

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  • LoriL
    LoriL Member Posts: 185
    edited July 2009

    Hello ladies!  14 down, 16 to go! Times really goes by fast- I can't believe that I am already almost half way done! 

    My skin is holding up nicely, but it feels MUCH better to go braless. So, I hit the clearance sales today and bought a bunch of nice soft, tops/blouses that look pretty good when I go "flat." I'm not very self conscious that way. And, I'm pretty thin, so a little gathering around the neckline gives the illusion of little breasts. :-)

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  • LoriRR
    LoriRR Member Posts: 6
    edited July 2009

    Hello Everyone! I also had my third zap today as well! So far, so good! 

    Cathey, My simulation was at 9:45 PM and even though it was four days ago, I can't remember anything uncomfortable about it. I think you are talking about the first time you lay on the table and they check all their measurements on you. I already had my tattoos done and they just took the measurements they needed and they took a few pictures as well. My hubby came into the room with me, only left for the photo zap and I think it was all done in about 20-30 minutes. They young techs were very kind, asking if they could touch me, and then always covering up my non involved body parts! 

    The very worst time was as I was laying on the table one of the techs said, " Mrs. XXXX, is that you? You might not remember me, but I am one of your former kindergarten students"  NOT the moment I wanted to be recognized!!!! It certainly lightened up the mood of the room however. I was now the talk of everyone's favorite teacher memory and I was no longer just the next patient.

    It is so nice that I am not really laying on that table alone=all of you are with me- in my head. THANK YOU!

    Lori 

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  • 7timewinner
    7timewinner Member Posts: 183
    edited July 2009

    Hello all!

    Well, I've had 4 out of 33 rads txs now, and so far so good. Definitely easier than chemo, lol. I did notice however that I am getting sore already at the surgical site. I've been given a tube of "radiation cream" to use, but I'm also using Aquaphor. I'd like to use a pure aloe gel as well...any brands in particular better than others?

    Anyone else notice that awful metallic smell during treatments? I had rads 25 years ago and remember the same smell then, too. I've been putting a dab of peppermint oil under my nose before treatements...seems to help.

    Nadine

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  • 7timewinner
    7timewinner Member Posts: 183
    edited July 2009

    BTW...carollynn79...I also recently had some thyroid scans and very soon a biopsy, since my MRI showed a large cold nodule. I am assured, however, that *if* it is indeed cancer (probably is in my case, with radiation 25 years ago for Hodgkin's Disease), that it is typically an "easy fix."

    Nadine

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