SEPTEMBER 2009 RADS

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited February 2011

    Hi all - I haven't posted here for a while. Are you all still out there. I hope every one has moved on.

    Here is what has happened over the past year for me. All year I worked on trying to get my truncal (flaming red boob) down. It took until the spring to get things relatively under control. But I seemed to have a flare up about every 6 weeks and I would have to start PT all over. By Dec. my LE PT specialist recommended acupuncture. I started and it began to work almost immediately. BUT THEN....stupid is, as stupid does!!!! I cleaned my shower on 1/1/11...caused my arm to flare up, it caused cording and golfers elbow. I have now moved from just a compression bra to a sleeve and gauntlet. I truly feel bound up most of the time. Things seem to be improving VERY SLOWLY.

    So that's it for me. A shout out to the rest of you.

    Betsy

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  • peg119
    peg119 Member Posts: 281
    edited February 2011

    BetsyBuzz - sorry to hear about your troubles.  I have been keeping up with the tamoxifen thread that moves so quickly it is hard to keep up.  I get occasional sharp pains on the side I had radiation but the rad/onc doesn't think is related.  It only last a few seconds and doesn't happen often.  Hope you continue to improve.

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  • kawee
    kawee Member Posts: 324
    edited February 2011

    Betsy and Peg - I check in once in awhile to see if anyone has any news to report.  Sounds, Betsy, like the rest of us, you just get to feeling well, and then we overdo.  Glad tho overall, your both doing fairly well.

    My adrenals failed partially due to prednisone use, even tho unusual.  They think the the cold turkey removal of estrogen had alot to do with it.  That's why i was so tired all the time.  Trying to get that straightened out.  All Dr. agreed, Onco. BS, PCP, Endo, Gyno (been seeing everyone about this) that I need to go back on a low dose estrogen.  Onco put me back on very low dose.  Started last week.  I'm scared, but boy do I feel better.

     Hope everyone else is doing well. 

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  • Titan
    Titan Member Posts: 2,956
    edited February 2011

    Hi everyone..just checking in!  Hope everyone is doing well!  I'm waiting for spring to come to Ohio and I'm thinking it may be awhile.

    Just had an onc appt. last week..everything is fine..mammogram coming up in May..plus onc and bs appt...2 1/2 months of freedom..YAY!

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  • echosalvaje
    echosalvaje Member Posts: 191
    edited March 2011

    Hey Everyone, I've been absent for a while too. I find that if I wander around on the discussion boards I get too wrapped up in others' processes and then get scared, so I just stay away with the idea that I'm getting my life back...BUT....

    Here I am at the two year mark of my diagnosis physically feeling pretty good but have been under a weird depression for about 6 months. It's not the sad weepy kind of depression, it's the "I don't give a shit about anything" kind of depression. And I really don't! I know I'm supposed to be out LIVING and I don't care about doing anything...ever. I thought spending 3 weeks in Mexico last month would jump start my attitude, NOPE. Is it the Tamoxefin? Is it the lack of estrogen? Is anyone else having this experience?

    Betsy, the lymphedema thing is such a pain isn't it? Mine was pretty minimal until last summer when I broke three ribs getting bucked off my horse. Ever since, my arm is much larger than before. I use the compression sleeve when I go to yoga or do anything else. I'm trying to force myself to be left handed so I don't aggravate the swollen side. On a more positive note, my husband has become the vacuum-er ;)

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  • kawee
    kawee Member Posts: 324
    edited March 2011

    ECHO, I totally have to jump in on this one.  I can so relate.  Didn't care about anything, didn't want to do anything.  Then once my adrenals failed, had tons of horrible feelings.  Anyway, they all agree removing me from estrogen is a major factor.  I am back on it (gulp) just because I had so many side effects from not having it.  You know my sister in law got off her estrogen and she told me the same thing.  She had no interest in anything.  She's back on hers also.  I think it's the tamoxifen, but I'm no expert, I just know that not having any estrogen was ruining my life.  I've been back on it  (lowest dose made) and I am already feeling better.  I'm back quilting, went back to my sewing class (had stopped all of it).  When I get up in the morning,  I look forward to the day now, instead of sitting in my recliner just thinking YUK, another day.  My Drs. all agreed I'm  low risk and it would be the best for me.  As a couple of them said, our lives should be quality, not quantity.

    Gosh, I hope you start feeling better.  It is such a miserable feeling.

       

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2011

    Aloha all... just back from a week in Maui. I am pleased to report other than the flight over and back I mostly went sleeveless! Talk about FREEDOM!!!!! It felt sooooo good. I went swimming 2-3 x a day. I think my arm loved it. I was very careful, except when a wave & I collided and I had a boogy board in my affected hand...Anyway...the wave won...I hurt my thumb (bruised & swollen) had to wear the gauntlet every night but my arm was ok. TG. I've decided I need to start swimming as my exercise of choice. I think the stretching is very helpful.

    Echo & Kawee...sorry to hear you are feeling down. I do think it's hormone based. That's the one front I'm feeling fortunate about, I don't seem to be having many problems other than regular night sweats and the occasional hot flashes. My sister had a total hysterectomy and she had a terrible time after it until she started with the low dose of estrogen. It is scary tho.

    Peg & Titan...glad you all are still out there! MTG....do you ever come to this board? How is your sister?

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  • Titan
    Titan Member Posts: 2,956
    edited March 2011

    If it helps I don't give a shit about alot of things either!  It's not like I don't care..but then..I really don't care!  But I do care about you guys!  Really..as much as I can!

    I think cancer does things to our emotions... it's hard to feel really emotional about anything..its like if you feel too happy about anything you will get shot down..or if you feel too sad about anything..well..not going to go there...

    I haven't had a good cry for a couple of years..and I used to be good at it.

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  • kawee
    kawee Member Posts: 324
    edited April 2011

    Well, if anyone's out there, I got a clean mammogram yesterday.  As the time approaches, I get very nervous.  I'm very thankful I get to see the Radiologist immediately after the mammo for the results.  What a relief to hear him say there are no changes. 

    TITAN - Sorry, but I understand.  Hope you're feeling better.

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  • peg119
    peg119 Member Posts: 281
    edited April 2011

    Kawee - glad to hear that.  I am not sure they get any easier after the first one.  There is always that question.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited May 2011

    Hey rads sisters!

    I know you all only check here once in a while...just stopping by to say hello.  I'm doing good, cancer-free til they tell me otherwise.  I only see my MedOnc every six mos for bloodwork and a groping.  Kind of just alternating that with the 6 mo. mammo visits now.  I had to cut out some doctors in order to get back to "normal" and not feel "cancer-y" all the time.

    I do have those same issue on my treatment side that some of you have reported.  The sharp pain out of nowhere, ribs still sore to pressure, and my back muscles seem more pulled on that side too.  I think there is a little shrinkage (I call it micro-scarring) on our rads side, and I think that may be at the root of the tight back muscles.  I'm on the Tamox. too, with joint pain that may or may not be from that.  I'm about ready to take a break for a couple weeks just to see if the joint pain will improve.  If it's just from lack of estrogen, then wouldn't just about every woman in menopause have achey joints?

    It's been a month since someone posted, but if any look in, then I hope all are feeling good and  getting ready to enjoy summer.  

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  • peg119
    peg119 Member Posts: 281
    edited May 2011

    Elimar - glad to hear you are cancer free still.  Hopefully we will all stay that way.  I think what you said about the micro scarring makes a lot of sense.  I am also on Tamox and will say it definitely causes joint pain.  I am on the Bottle O Tamoxifen thread and many of the women complain of joint pain among other things.

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  • Titan
    Titan Member Posts: 2,956
    edited August 2011

    Hey..how is everyone doing in our 9/09 group?  Two years for us from the start of rads.

    I'm hanging in there...at the last BS appt in May he told me that my "bad" breast look remarkable for having going through rads...It looks just like the other one..so I guess (I'm 51) that saggy is a good thing.

    Hope everyone is doing well..just checking in with you.

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  • peg119
    peg119 Member Posts: 281
    edited August 2011

    I am doing pretty good.  Still slightly discolored from rads and occasional sharp pain but not too bad.  Mostly just dealing with side effects of tamox.

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  • echosalvaje
    echosalvaje Member Posts: 191
    edited September 2011

    Hey all you RADical sisters! Just giving a shout out in honor of our two year start up with this part of treatment. Thinking back to this time two years ago, I was terrified, still sick from chemo and sore from bilat mx. Now I am happy to report no longer sick from treatment, or sore from surgery and only terrified every 3 months when I go for labs and check up. I rarely check these boards because I am out living (the addition of Wellbutrin really helped)! I hope you are all well and living in the moment. Cheers to all of us! OXO, Mary

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited October 2011

    Hi all...update on me. I was dx with endrometrial cancer on monday of this week. SE from tamox. Now, I look forward to a hysterectomy + removal of ovaries and fallopian tubes.

    My truncal LE has really improved. The arm LE flares up occasionally but not bad. I plan to draw on my LE arm No IV and No BP in permanent marker before surgery so they don't screw up while I'm asleep. Wish I had better news but that's where I'm at.

    More later. Miss you guys.

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  • kawee
    kawee Member Posts: 324
    edited November 2011

    Oh, Betsy, just now receiving your post.  Don't check in much anymore.  So sorry to hear about this.  Is it a side effect of tamox?  When is your surgery?  Please keep in touch, let us know how it goes.   I'll check back more often. 

    I'll pray for you.

    Karen

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited November 2011

    Karen,

    They don't know for sure but endometral cancer is one of the SE's of tamoxifen. Healing from surgery, glad that's over with and ready to finally get healthy. It's been a long process for me.

    Happy Turkey Day! Hope everyone is doing well.

    Betsy

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