SEPTEMBER 2008 rads group

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008

    I really like the idea of the flower petals to count down.  I think I will have my girls create something that we can use to count down too.  They are 15 & 17 and enjoy drawing and coloring now much more then they ever did when they were younger, so that would be right up their alley.

    Nancy, I have been extremely busy at work, my dx came right in the middle of a huge project with a deadline of October 1.  So while I am glad I have had this project to keep me busy, some days it has been hard to concentrate, hopefully all will be ready next week - I have no choice in the matter, so I totally understand the schizophrenia thing.

    Chris

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008

    I really like the idea of the flower petals to count down.  I think I will have my girls create something that we can use to count down too.  They are 15 & 17 and enjoy drawing and coloring now much more then they ever did when they were younger, so that would be right up their alley.

    Nancy, I have been extremely busy at work, my dx came right in the middle of a huge project with a deadline of October 1.  So while I am glad I have had this project to keep me busy, some days it has been hard to concentrate, hopefully all will be ready next week - I have no choice in the matter, so I totally understand the schizophrenia thing.

    Chris

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  • Kleenex
    Kleenex Member Posts: 764
    edited September 2008

    I'm just barely starting this in time to be in the September group - I've had three treatments so far, after a busy week with the planning session and then the dress rehearsal and then right into the zapping. I DID feel like I felt it the first and second days, but not the third day. No burning smell - that would've creeped me out! I'm hard to line up - they're trying to zap the upper part of my left chest/breast, so the angles are steep and I have to be just right on the table or the huge arm that holds the device that delivers the radiation hits the edge of the table and they have to start over. Much time is spent gently rolling me from side to side and then releasing - as though my butt is a beanbag and they're redistributing the beans. Sometimes, they almost have to kick the release on the right side of the table, to get it to work.

    Also - one of the techs went on and on yesterday about the fabulous, newer machine next door.  I assume I was supposed to be impressed with the extra effort and skill that goes into dealing with a "block" that has to be inserted to keep my heart from being radiated, etc. On the OTHER machine, the computer would take care of that, she said. Many other details were provided about that amazing machine next door. I said, "So I'm on the old Chevy Nova machine, and there's a sleek new high-tech vehicle that other people are using right next door?" "Yes," she said, "But that newfangled computerized machine breaks down a lot more, and your machine is nice and reliable." I asked if perhaps I could make a scene to get the newer machine, and she assured me that I could not. I don't need the elaborate things it's capable of, she said, and they need to save that schedule for the people who do. Somehow, I really didn't feel reassured. I'm good with radiation being a tried-and-true treatment. I'm NOT good with thinking it's old or outdated.

    I think the key to radiation must be to not think about it too much. I'm doing my best, but I swear, if I see duct tape anywhere in that room, I'm out of there.

    Coleen

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  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2008

    I had my port out about 3 months after chemo was finished - was having a horrible time with it - hurting, etc and the last time they had tried to get blood out of it - they had a time doing it - sooooooo - my onc said he LIKED to keep them in from 6 - 12 months BUT when it was giving problems he would remove it - sooooo - my breast surgeon removed it - in his office and HOW NICE it has been - that thing is GONE!!   I read in one of my books where a lady asked to KEEP hers - the doctor said - we can't do that - he asked - why would you want to keep the thing - she replied - because I want to take in out in the woods and blow it to hell and back!!!   ha ha ha ha    I'm sure all of you who had one can relate -

    Two more regular treatments and then 8 Boosts.   I can't believe it - just two weeks left and I'm FINISHED!!!    Are any of you doing anything special when you're through?  

    See my regular Onc on Wed - will find out then if he wants to do another PET scan after radiation - part of me wants to go ahead and do it - the other wants to wait - I guess I'm scared they will find something somewhere else.    Those of you who are getting close to finishing - are you noticing that you are getting more weepy?    I am!!    Thought when I got to this point would just be jumping up and down but it seems now I'm worried about after!!    What will happen then?    Hey Nancy - maybe you should start a group for AFTER treatment has ended folks!!  

    Hugs to all!!

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  • princessS
    princessS Member Posts: 45
    edited September 2008

    I am dreading the end of treatment.  That means I'm on to the tamoxifen issue.  I'm fine with my treatment so far, but the tamoxifen, I have very mixed feelings about it.  I'll have to go to the hormonal therapy board.  Plus I like to see the techs everyday, and I love to see my dr. every week.  So I think it is completely normal to feel sad at the end of this.

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  • KAK
    KAK Member Posts: 1,679
    edited September 2008

    Hi, everyone.  Nancy258, thanks for the support.  All of you going through chemo & mastectomy & reconstruction & expanders, I feel like a wimp to be whining about my little ol' nipple!  I know it's all relative, though, & none of us wanted to join this damn club.

    I'm really happy to keep hearing more published reports about the 3-week rads protocol that I've gotten to do myself, even one here on the front page of bc.org.  I just finished my 2nd week & have had no skin issues to speak of.  I hope my luck holds out to the end.  I was really, really tired today, but that may have had to do with rads plus talking to my surgeon yesterday about the way my incision has scarred up.

    Sisters, I am glad to report that my surgeon was a peach about the whole thing.  She was very validating & compassionate & acknowledged that I must be very disappointed about this scarring since it seemed at first to be healing so well.  Nancy258, you're right of course, that there's nothing surgical that can be done for the time being, but I knew that going in.  I did get all my questions answered, though.  There is a good chance that if I keep massaging the incision, using Oragel on the nipple sensitivity & exercising, the adhesions could sort themselves out by the time six months go by, & if they don't, then I'll be able to talk to a PS if I need to.

    I have to say I cried my heart out when I was talking to the surgeon, because she was being so understanding.  I guess I needed to.  We all have to cry once in a while during this "adventure."  And I got hugs from her nurse, who has always been lovely to me, & hugs from my girlfriend who came with me.  So, even tho' the bc adventure still bites, I feel grateful for the compassion that has come my way.

    Kathi

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  • KAK
    KAK Member Posts: 1,679
    edited September 2008

    Just another quickie.  Ace, I'm sorry you're having the burning.  Pure aloe has been recommended by a lot of women on here for that.  Tchmuzik, as it happens, the last day of my rads, I am going to meet up afterward with two of my oldest girlfriends who are taking me out to lunch!  And the weekend after I'm done, there is a special event happening here in Rhode Island, which is called "Waterfire," which is this outdoor thing where they light floating fires all along the Providence River after dusk.  It's really beautiful & this year's last Waterfire, which happens right after I finish rads, is devoted to Breast Cancer Awareness.  They are going to be lighting the Rhode Island Statehouse in pink lights, among other things.  So, of course I & a bunch of friends are going to that, & I can't think of a more perfect way to celebrate the end of radiation.  Here's a link if anyone wants to check out what's happening:  http://www.gloriagemma.org/waterfire_pictures_2008.html

    PrincessS, I confess I'm dreading tamoxifen, too.

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  • SonCallsMeEarl
    SonCallsMeEarl Member Posts: 76
    edited September 2008

      Will this soon be the OCTOBER 2008 rads group  ?????  I have not posted on this thread yet, I don't think, where did my memory go?  But, anyways, I completed rad# 12 yesterday and so far so good. I've enjoyed reading all of the posts, I especially related to the one about the boob shadow on the ceiling..LOL...and then to top that...the song to go with it. LOL

    All of you are just great!

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

     PrincessS - Thanks for explaining boosts.

    Earl - you're right Oct. will be here soon! Sept./Oct Group  - lol

    I hope we all stay in touch !

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

    OK, here's a little comparison for those just starting out or in early days of rads.

    In cooking breakfast this morning, I got a splattered grease burn on my arm (not the cancer side, thankfully). I want you all to know that this doesn't hurt that much, but it hurts wa-a-a-y more than the radiation treated area. The rad skin is red, slightly itchy, slightly prickly, but no burn pain. Not like the grease burn.

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  • Skye64
    Skye64 Member Posts: 109
    edited September 2008

    Hi everyone, I hope I still can join your croup. I am 26 down....8 more...my skin is red but still good. A little bit ichy...I used the emu oil and hydrocortison creme.....

    But I got some nausea, heartburn and my stomach is upset. Did anybody has that too?

    And dry cough...hmm, I really do not know where does that come from.

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

    HI Skye! You're certainly welcome to join us.

    Heartburn, yes but I have had that for years.  I've been off my Prilosec for a couple of weeks now and if I watch my diet, I manage to get through the day without a major incident. I couldn't give it up during chemo...that was just too disruptive, but I vowed to try and wean myself during rads. Nausea/upset stomach...only once, and I just finished #19.

    Dry cough...not really. I do have some nasal congestion, which is most likely not connected to the rads at all, that is causing some post nasal drip and a slight cough from that. I'm chalking mine up to seasonal allergies. But depending on how high up your chest they are radiating, the edge of your esophagus could be on the fringe of a ray. If they're only doing your breast and axilla, then it's probably not related. 

    26 down! Great! I can't wait to get there, too. 

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  • vhqh
    vhqh Member Posts: 535
    edited September 2008

    This will be my last week, all boosts, and then I'm done, MAYBE!!!  Got a bad CT scan, am still waiting on the PET and MRI results to see where we go from here but more radiation is certainly a possibility.  I was also thinking it was going to be weird not going in every day but I would certainly have preferred that to doing more rads. 

    Skin has been much more tender and ouchie this weekend, got zapped Friday morning then they immediately pulled me in for my Herceptin.  I forgot to put my aloe in my pocket before leaving the house but didn't worry thinking I would just put it on as soon as I got home.  Before I got home the PET center called and moved my appointment up so I had to leave immediately to get there.  By time I got home hours later I could tell that not getting the aloe on right after treatment had made a big difference.

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  • jea1013
    jea1013 Member Posts: 52
    edited September 2008

    Skye64,

    I just wanted to say that there is a low level virus going around the creates terrible heartburn, extra fatigue, and stomach cramps/gas.  I would have thought it was me but my husband has the exact same thing. 

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    Makraz, saw the doctor today after my treatment.  She says I'll be getting 36 total treatments, and included in that will be 8 boosts to the lumpectomy site.  She said because I'm larger breasted (36 full C), that's it's better to spread it over more visits as it's easier to control swelling and shrinking and I should get a better cosmetic result.

    Tchmuzik, my friends (4 or 5 couples) and I had planned a trip long before I knew I would be going through this bc stuff.  My last treatment should be Monday, October 27th, and we're all leaving for Costa Rica on Saturday, November 1st, for a week.  It's so nice to have something to look forward to!  However, we're really cutting it close with the treatment, so I hope I'm in good enough shape to enjoy it.  I really want to do the zipline through the jungle.  When I told my friends they may need to carry me around, they said, well it's not like we haven't done that before, ha!

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

    Good afternoon, y'all!  How was everyone's weekend?  The weather was FANTASTIC here!!!  My brother and I went walking around a lake, which is actually a park for dogs and their humans!  Laughing  Our Aunt also had us over to her house Sunday, for bbq moose t-bone steaks!   So, I have to say it was nice to get out, if only for a moment!

    I had my 8th treatment this morning, and I'm starting to feel the tiredness of it all! Frown  25 to go, so hopefully, if the machine doesn't break down, I'll be done with my LAST treatment exactly five weeks from today! Laughing

    Jane, I was just wondering about others and their ports.  I think I'm okay with mine staying in, although I certainly don't want to be flying in and out again, just to get my port flushed!  I'm thankful I don't have a superstitious onc!  BTW, how long did it take before you got your prostheses?  I'm thinking of getting one, but IDK...

    Well, I hope y'all have a great week, and may it go faster for those of us that are still getting treatments?!?

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Number 9 down- I told not to let anything break since I will make double digits tomorrow.

    I have a face now!!!!

    Kristy 

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  • searching4
    searching4 Member Posts: 55
    edited September 2008

    Today was #10 out of 33.  I finish Oct. 31 so yes, many of us will proceed to the October rads group.  Since I finish on Halloween, I'm thinking of dressing up as a radioactive boob for the occasion.

     Nancy, I went to Costa Rica about 4 or 5 years ago and it was FANTASTIC!  So, that should be a great celebration for having finished the rads.  We loved the zip lines, and the volcano at Arenal--  just everything, really,  Congratulations on a great plan to celebrate!

    Love the breast shadow.  I get it too, but not every time.  Looks very perky, much more so than the real thing does at this point!

    I can't figure out what kind of radiation it is.  I know it's photons.  I am curious about this stuff.  I like to know what they're doing to me.  Years ago I had an experience where I didn't do my research, and I paid for it when my gynecologist told me the repercussions would be the exact opposite of what they turned out to be.  So I am always questioning them. 

    Anyone else still have a very swollen lymph node side after over a month?  The tech says it not in the field, thank goodness, because I was afraid it would never heal with the radiation going on,

    Skye, of course you are welcome! 

    Kleenex, I know what you mean about the machine.  Someone made a comment one day about how long it had been around, and my first thought was that maybe I should have gone to a center that had just been renovated or something!  I want the best control possible.  Anyone know if we're having 3D conformal?  I lay on this pad they made, molded to my upper body.  They do a wider and shorter blast each from two different sides. 

    Redhead, you have a great boss!  Something like this can really bring out the best in people, and that was such a sweet idea!

    Here we go on another week-------

    Deb

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  • tkone
    tkone Member Posts: 511
    edited September 2008

    All,

    Treatment 1 today.  No issues to speak of and all in all, pretty easy.  I am thankful for this board so I have some ideas of what to expect as far as skin problems.  Like Nancy, I have a trip planned at the end of rads so I have to hope that nothing goes wrong.  We are going to Hawaii on November 17th and after 28 treatments and 5 boosts, I should be done on November 12.  Keep your fingers crossed!  I am going to be laying on a beach with a drink with an umbrella no matter what!

    Hope everyone is doing well.

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008

    #3 today

    This weekend we had really crappy rainy weather - of course the sun was shining today when I went back to work.  My son has a leaf project due in October, but having learned from when my girls had the same project - we have to get the leaves early.  This weekend was our best shot at getting the leaves he needs, so I walked in the pouring rain around the park identifying and picking leaves for an hour and a half.  I was glad to spend the time with my almost teenaged son, but really why couldn't the weather have been nicer for us?

    Deb, I like your idea of dressing up as a radioactive boob for halloween!

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Hey Everyone:

    Finally, I start rads tomorrow. Wish me luck. I'm a bit nervous although everyone where I treat is so very kind.

    Met w/a plastics guy today. NancyD, you were right, I have a lot more options than I realized. He is also willing to do the surgery as soon as mid-January if I am up to it. I cannot decide which option to go with but I have time.

    Sharon: 7-10 days for my prosthesis.

    Best of luck to everyone this week.

    Love and prayers,

    Jane

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    I had treatment #5 today and my anxiety is lessening a bit.  I didn't go to a big center for my chemo and now I do for the rads and I think that is what is causing the anxiety - seeing how awful this disease is for some people.  

    When did people start feeling tired?  I'm thinking of walking (running is out of the question) the CIBC Run For the Cure this Sunday but by then I will have 9 under my belt and don't want to end up totally exhausted for the rest of the week.  I might have to put the run on hold for another year.  I'm finding I really have to think about where I want to expend my energy.  

    I'm finishing on Oct. 31 also and I'm so glad it's a Friday because it will be a busy night after.   

    At least this week is off to a better start.  On Friday they couldn't get me up on the computer and I was there an extra hour.  Not a place I really want to hang out at.

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

    Roberta, the fatigue comes and goes. I have felt pretty good for the last week or so, but had a weekend when I was really pooped.

    Jane, good luck with your first one. Since it's a little longer than the others (but not as long as your simulation), get in a comfortable position and then let the techs do their push and pull thing to get your tattoos lined up.

    Tracy - One down! 32 to go.

    Dancemom - #3 will soon disappear in a flurry of tx. By the end of theweek you'll be up to 7. and then in double digits before you know it.

    Midsum - you see, you're already in double digits!

    KristyAnn - you're catching up!

    Sharon - you're not too far behind. Double digits by the end of the week!

    Ace - twenty down! Wow, time flies.

    ********

    My techs congratulated me today, saying I was now in my last week of rads, will finish a week from today. I said, Really? I thought I was going until the 13th. I originally thought I would be done on the 6th, but somewhere along the way I got the 13th in my mind. I was WRONG. What a nice surprise for a Monday. 

    SO, I'M OFFICIALLY DOWN TO MY LAST FIVE! And not a moment too soon. My chest is very red and now my underarm is getting sore...the underarm that otherwise has little feeling.

    \

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  • Skye64
    Skye64 Member Posts: 109
    edited September 2008

    jea1013:

    No it is not like a flu, I am the only person in my family who has stomach problems. Now I have it 2 weeks, and it is not getting better.....also I have some metalic taste in my mouth. I really think , that comes from the radiation....I am so glad, cause I see a light at the end of the tunnel......7 left

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

    Good Evening Ladies,

    Well, here we are starting another week - hopefully it will fly by.

    NancyD - how is your hormone treatment going so far? Any side effects?

    Thanks Jane for the prayers Kiss

    Take Care Everyone !!

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited September 2008

    Some of you ladies are so much farther along than I am. I had #6 today.

    Question, my rad tech puts a red plastic strip across my incision on my breast every time. I asked her what it was and she said it adds concentrated radiation to the scar. I see the doctor on Wednesday for the first time since I started last week so she'll measure my arm and hopefully answer some of these questions. They also take picture every few days. I was told this was to ensure I still line up to the first measurements they took and they may need to make some adjustments. I have heard that if bc was to return in the same breast, it usually occurs in the incision site. Does this sound similar to everyone's treatment? I asked about boost and they weren't sure if I would be receiving any.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Mary,

    They drew along my scar line with some red plant ink- I have heard the same about recurrence at the incision site- I will be getting boosts to the incision site at the end of my treatment schedule.

     Ive only had 9 out of 33 so we are close to the same timeline- finish Oct 31 if no delays

    Kristy 

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

    Rose, the Arimidex is going along very well. I don't have any new pains...only the old, regular ones. Hot flashes may be a little more frequent, but that's hard to judge. I was down to only one or two a day anyway, and they're pretty mild so sometimes I don't notice them until they're almost gone. I may be missing them all together if I'm busy.  However, I've only been on it a little over three weeks, so it's early days. I've heard that s/e's can take months to develop.

    Roxi, Kristy, I haven't had any extra markings along my scar, but they do draw a measurement line down my sternum. I don't know if that has any extra power drawn to it. Sometimes it's red; sometimes it's black. But that's the area of my body that has had the strongest reaction. It got pink almost right away and now is very red, itchy, and will probably end up peeling next week. I have my last rad this coming Monday, but I've heard the s/e's carry on for a while as the effected cells work through the radiation.

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    Midsum1107, Costa Rica sounds great, can't wait.  My SNB site was healing very nicely, but now it's in the radiation field and it's pink and has developed a red pimple like thing on it.  My rad oncol told me it might be the remainder of a stitch.

    Tracy, let's keep our fingers crossed, we are cutting it close, but how nice to have something to look forward to.  I loved Hawaii the one time I was there.

    Janloy, good luck today.  As roberta says once you get started, the anxiety does let up a litttle.

    Roberta, my rad oncol encouraged the walking, but discouraged me from running as you need to wear something supportive and the rubbing is not good for your skin.  The first few weeks I didn't get it and did a little running anway (ended up with sore swollen breast), but now that my skin is starting to get pink, rashy and itchy, there's no way I want that friction going on.  The walking actually makes me feel better with the energy.  I just have to do it in the morning now.  In the evening I'm not feeling like it much.

    NancyD and Skye64, awesome, you've got the finish line in site!

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Nancy,

    DId your doctor test you for post-menopause before starting the Arimidex? I was peri before chemo, chemo made me post-menopause but the doc doesnt trust me to stay there so she wants my ovaries out before starting Arimidex. Just wondered how other doctors made the call on which drug to use?

    Kristy 

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