MARCH 2010 Rads Group

3monstmama

Hi all.  Still recovering from radiation pneumonitis---coughing hasn't reappeared but exhaustion is back after what I would consider to be minimal exertion.  Such a DRAG.....

Am wondering if anyone else experienced any delayed side effects off their treatment but hoping everyone is well and getting set to enjoy their summer...........

MarieK

Sorry to hear about your radiation pneumonitis 3monstmama. 

I'm still coughing on and off but it's not from radiation but from a cold I had at the end of May.

I will keep on top of it though just in case it turns into something else or is masking something else.

We have to stay vigilant and on top of these things!

YramAL

No cough here, but almost 12 weeks out from radiation, my breast still feels a bit tender-sort of like premenstrual tenderness. My onco says that could last for up to a year. My radiated side feels a little fatigued around my ribs and underarm area. I went to a lymphedema therapist for tips on how to avoid lymphedema, and she did a test on my range of motion of my arm on my affected side. I've lost a little bit of range of motion of my arm-perhaps due to my sentinel node biopsy, perhaps due to rads. I'm doing exercises now to break up the scar tissue, whatever it is from. 

I've been on Tamoxifen for almost 12 weeks as well, with minimal side effects. Some hot flashes(but I was having them anyway) and my periods have become irregular-sometimes every 3 1/2 weeks, sometimes every 6 weeks....... I can virtually guarantee I will have my period next week while I'm on a cruise!

Sometimes I wonder if I will ever feel "normal" again.

Mary 

AndreaS97057

Jenn,  Today I had a normally busy work day where I wasn't thinking about my still swollen boob (physical therapy appointment next week for that one), and life just seemed normally busy and hectic.  I get home and my chin is hanging in my dinner plate and I want to fall into bed at 7pm.  This seems to be happening quite a bit right now, and I no longer have my travel schedule to blame.  I don't feel abnormally stressed, don't feel like I'm worried about recurrence, just get waves of exhaustion when I'm home.  I sure hope that I'm still just catching up after the six-month whirlwind that I've been on, but I'd hate for the new normal me to be in bed at 7pm every night - that sounds a little dull (especially since summer has FINALLY sort-of arrived for us Pacific NW'ers).

YramAL

Andrea and Jenn-I'm a Pacific NW'er as well.(Shoreline) Isn't it great that summer has finally arrived?

I still go to bed around 9 PM-I wonder how long that will last and how much I can chalk up to age(50) and how much to chalk up to rads?

Mary 

Raili

Jenn, so sorry about your lingering pneumonitis!!  I hope the exhaustion lets up soon!

 I was all paranoid that I had breast lymphedema (due to my treated breast still being BIGGER than the other, when one would think it would be smaller, after having tissue removed from it 3 times), but I had my check-up with the rad. onc. - a female one who was subbing for the usual rad. onc., yay for me!!! - and she said it's normal and the swelling might just take a few more months to go away.  That's okay with me.  

Sometimes my incision itches, sometimes my breast is sore when I sleep on my stomach, sometimes I still get that weird rib pain... but I think everything is within the normal range.  I'm pleased that my burned skin has completely healed.  The rad. onc. sub looked at my breasts and said that if it weren't for the incision, she wouldn't be able to tell which breast was treated!  That was good to hear.

3monstmama

Hi all.  I'd have responded sooner but I was falling asleep   

AndreaS, like you I find I am completely wiped at the end of the day and sometimes in the middle.  Heck, I can't even find the energy to call to meet up for the coffee!   At this point, I don't know if its the pneumonitis or the lingering rads or a combination but whatever it is, it still stinks.  Prestupidbreastcancer, I regularly went to bed at 10:30 or 11 and popped up again at 6:15.  Now I go to bed at 10:00 or 10:30 and crawl out of bed at 8.  Even with extra sleep, there doesn't seem to be enough coffee to get me through the way I used to.  YramAL  I am closer to 50 than I usually like to remind myself and was a fairly high energy person until this so I am inclined to think it is more the zaps than the age.  My therapist told me I needed to cut myself more slack and that healing/recovery from zaps took longer than I wanted it too.

Per advice of my three doctors---pulmonary guy, oncologist and therapist-- I am back to taking an hour off each day so I can sleep in and not feel stressed.  I even called in sick last Friday and just stayed home to rest a bit more.  All that seems to do is stress me more because I feel like I am not doing enough at work [I'm part of a team for a project and if we were on that silly show that used to run, the host would be yelling "YOU ARE THE WEAKEST LINK! GOODBYE!" before they shot me out of a cannon, no, wait, that was the Doctor Who version but still. . . . ]  I keep wanting to ride my bike more thinking more exercise will help but on the days that I haven't --which are most of them--by the time I walk the block up the hill to the bus to go home, I am zonked and thinking omygod, how could I possibly bike home feeling like this?

The fact that everything has healed perfectly makes me feel more frustrated with myself.  I think it something looked "wrong" I would cut myself more slack but since it looks great, I expect me to be back to normal superwoman.  grrrrrrrrrrrrrrrrrrrrrrrrrr.

Raili,   so glad you found out the swelling was just swelling.   I am also having some discomfort sleeping on the incision side and the occassional zapping pain but its pretty much what I expected. 

yargh.  Okay the weakest link better get herself back to business or soon I will be feeling worse.

happy hump day!

Claire_in_Seattle

I actually started rads at the end of April but will respond here as think might be helpful.

First thing is that nothing in this whole experience changed the fact that I am Type A, so have major problems cutting myself any slack at all.  However, I also realize my breast needs to heal.  Radiation is a lot more subtle than surgery because no obvious scar, but the underlying tissue has to recover.  I have a relatively large incision, so guess what with the boosts.

That said, I was unprepared for how wiped out I would feel for about three weeks.  One of these was the week following last boost (6-10 days out) where I made things worse by doing a 45 mile bicycle event (Flying Wheels) on Day 4.  WOW!!!  But I got out anyway, and did 45 miles of LIVESTRONG on Day 12.  Yes, I was tired after that (weather was rainy and miserable), but not nearly as much as the prior week.

Right now, I think getting in my cycling really helps as I get much deeper sleep afterwards.  I have to do this as training for the Seattle-to-Portland in 2 1/2 weeks.

I have a bit of a break in the action with my consulting work, so taking this time to cover the essentials and regroup.  Today (Day 22), I feel like I have my edge back.

This is probably because I have reached a certain milestone with think healing as swelling is going down on that side.  Less sore too.  Based on past sports injuries, I expect this process to take several months.

However, I get the "nothing obvious is wrong" part.  Need to remind myself how that was true of my right shoulder a year ago (and left one two years ago!) and it took more than six months before I stopped seeing stars if I moved it the wrong way.

But as I said in the beginning, it's hard for me to take that view.

3monstmama

Hey all,

Thanks for the encouraging words---its nice not feeling I'm the only zonked person out there..  Well, not nice that others are zonked too but you get my meaning.

Happy 4 o' July Holiday to all the US citizens out there and happy weekend to the rest of the world.......

jenn

Sugar77

I, too, am really zonked.  I think radiation wore me out worse than chemo...or maybe it was a culmulative effect.  Anyway, I am so tired these days but feel I'm starting to come out of the fog. Have a wonderful 4th of July to all the ladies in the USA!

Sherri 

MaryNY

I finished rads on April 9 and it's only in the last couple of weeks that I really have my energy back. I wonder too if it was the cumulative effect of rads on top of chemo as I think I was really tired the first week or two of rads, then things got a bit better, then I was struck by the kind of exhaustion where I could sleep standing up. Now it's just like Sherri said, as though a fog has lifted.

Raili

I didn't have chemo.  The rads exhausted me for approximately the last week of treatment then the following 2 weeks, and then my energy returned.  My energy was great for the next month or so... then, hello Tamoxifen.  It's day 18 of Tamoxifen and I slept for 10.5 hours last night, even though I had not been sleep-deprived nor had I done anything taxing during the day... there's no reason I should be falling asleep 3 hours earlier than my normal bedtime... Ugh.

3monstmama

Raili,

and see, I'm not sure it is Tamox--it may be the zaps.  The first week I was sore from the burns but not zonked.  The zonked part started well after I expected it to and I still don't have tamox.  I am thinking it is the radiation and that it takes a lot longer to recover--because there is "stuff" going on inside--than I expect.

oh well, too much unknowns and too much to do to prepare for guests.  Hope everyone is having fun--must go see if boys are actually mowing lawn or just mowing down my sad little lavender plant.

Happy weekend!

Sugar77

3monstmama - I think you're right about it being the rads that's making you tired.  I am triple negative so no Tamoxifen for me and I started getting really tired toward the end of rads and then weeks afterward.  The tiredness is actually worse than when I went through chemo. 

I want my old life back!!!!

Happy 4th of July to the ladies in the US.

Sherri 

3monstmama

hey all,

Happy 2 months post Zaps to Me!  Happy 2 months post Zaps to me!  Happy Two months post Zapssssssssssssssssss, Happy 2 months post Zaps to me. . . . and many mooooorrrrrrreeeeee

Now for something slightly serious.  In the shower today I noticed that zapped boobie is still peeling.  Not all over but around the nipple or at least, where the nipple attaches to bad boobie.  Also there seems to be, for lack of better term, seepage from the nipple.  Not a lot more like that kind you get sometimes around your period when one gets wacky hormonal [or maybe that was just me . . .] though I can't imagine why I am getting that as my hormones have purportedly all gone to sleep since the oncologist says I'm post menopausal but anyrate.  We aren't talking a lot, just I noticed when I was using a q-tip to rub off the peeling part.

Is  anyone else still noticing a bit of peeling or other signs of something "going on" in there?  I know the radiation oncologist said to expect the healing from the zapping to go on for some time but I confess, despite the occassional zap in the boobie [about which I was also forewarned], I didn't really think he meant it would be something I could see.

Other than that, it is a beautiful sunny day and will be the same tomorrow and I will be off tomorrow to enjoy it. Hope everyone is able to enjoy their summer too.

AndreaS97057

Bleech.. I don't know if you all remember, but I complained a lot about swelling throughout radiation, but now it seems that many of us have it.  My rad onc warned me about that when fluid pools in the breast that it might leak out the nipple.  It didn't happen when I felt like I was going to explode during radiation, but I now have this yellow crustiness around the nipple.  I went to a physical therapist last week, and she said that its lymph fluid and that I should be watchful for lymphedema even though I had no lymph nodes removed, not even a SNB (zaps hit some of the lymph system and it can get damaged).  I didn't know enough to ask whether this was a long or short term issue.  So, yes, Jenn... I also have some weird effects that are on-going and visible.  Radiation.. the gift that keeps on giving.

On the positive side, I went to a family event over the 4th and at the end, a relative asked in a very caring manner how I was doing.  Since my hayfever was causing me to sneeze and itch, I told her I needed another kleenex.  A couple hours later I realized she wasn't talking about my snotty nose and that BC wasn't anywhere in my head for at least those few hours.. yipee! 

I hope you all had great long weekends.. I sure did.  I need more of those in my life!  - Andrea

3monstmama

hi all,

 here in Seattle it has been atypically hot the last couple of days.  Tonight when I went to wash face etc, I noticed my zap marks were back.  They were completely gone and all the skin was the same color but now the zap marks are back.  By "zap marks" I mean that distinctive sun tan that marked where they zapped me, particularly under my arm.

I have not been wandering around topless or even in a sleeveless top: I've just been hot and muggy and sweaty.

Has anyone else noticed anything similiar?  If not, perhaps this is a heads up so no one is startled if it happens later to them.

happy weekend!

 jenn

Sotiredofthis

Is (or has) any one else experiencing limited range in the arm on the side the breast cancer was in?  Almost like the chest muscles feel shorter and it is painful to stretch them.  Any recommendations for making it better?

Thanks for sharing info you have!

Sugar77

Sotiredofthis - yes, I had very tight muscles at the side of my breast after radiation. I go to a cancer exercise program run by a physiotherapist who specializes in lymphedema and cancer programs. She says the tightness I was feeling was due to the radiation. She has worked with me to stretch it out and it feels much better.

Sherri 

YramAL

I, too, have had very tight muscles in my chest on the side of my radiation. I have been to a physical therapist who measured my range of motion on that side as compared to my other side, and I had lost about 5% of my range of motion. She gave me some exercises to do, and last time I saw her, I was greatly improved. 

My muscles around the ribs on that side are still kind of tender, though. It doesn't keep me from doing anything-I'm just aware of it occasionally. My skin on my radiated breast is still extremely dry as well. I use Aquaphor on it every night, but not during the day because I don't want to ruin my bras!

Sherri-I like your new picture-your hair is cute!

Mary 

3monstmama

I've also noticed some tightness in the Zap Zone.  I tend to sleep with one arm folded under my head and when I tried to do it with my left arm, it felt different.  but it hasn't bothered me enough to seek any therapist support.

There is a little tenderness in the Zap zone but its not something I notice unless I push on it.  Mostly things are back to normal, especially now that the pneumonitis has cleared up.

June2268

Hi ladies hope you are all doing well.......Sherri I love the new hair, BEAUTIFUL!!!!!!!

 I too have noticed the tightness in the radiated area, especially lifting my arm back over my head or to reach for something high up on the counter.......what exercises did they tell you to do to stretch the muscles and will we regain full mobility?

I am having the best summer ever!!!!  I hope you are all doing well and I miss our weekly chats!!!

MarieK

Hi All!

Yes I'm tight too but I noticed mine started long before Rads - about a month after surgery (left side Mast). 

I had cording under my arm and a tightness down the ribs on the same side.  I saw a PT and she worked it out for me with exercise and massage.

After Rads my upper chest and scar area was tight.  Lots of moisturizer and daily massage has helped to alleviate that.

I'm seeing an osteopath now who is helping me "loosen" up before my TE surgery (in Sept).

Every morning - before I stretch out - I feel like that whole side of my body has retracted and I have to start all over again.

Don' t know if I'll ever be "loose" again.

YramAL

June-

The exercises that I do are basically what you describe doing in your daily life-reaching up over my head as high as I can. I stretch my arm up to the ceiling, and then I stretch it back as far as I can, and stretch it to the opposite side(across the top of my head) as far as I can. 

I had lost about 5% of my range of motion of that arm when measured against the range of my good arm. After doing these exercises for a month, my range of motion is the same as my good arm.

I still feel tight-I'm hoping that will go away with time.

Mary 

June2268

Thank you Mary I will start stretching more right away......I have been doing little stretches like that but nothing on a consistent basis.......time to get to work......

Any of you ladies on tamox?  I had my 1st pelvic ultrasound today as I am having alot of pressure and discomfort in my pelvic area......I just ended my period at the time this started, wondering if this is all connected or another problem to face.......I am well into month 4 of the pill.......just wondering if I am the only one with this problem......I am awaiting the results and only time will tell......

Tex17

Well it's nice to see that everyone is still in touch. I haven't signed on for awhile because I really needed a break from breast cancer. It is unfortunately a part of my life now and I was reminded at the end of 7 mile hike in Maine. It was difficult climbing in some spots and I hurt either my ribs of the muscles around them in the area of radiation. It's two weeks later and just beginning to feel better. 

June, I have had little trouble with the tamoxifen but there are some new feelings in the pelvic area at strange times. Again I've just been trying to feel normal. I believe it's making our bodies have a new normal. I hope your test turns out fine.  

Sotiredofthis

Thank you all so much for making me feel normal.  I had my first follow-up mamogram and visit with the oncologist since I finished radiation and didn't even think to ask her (duhhh).  The good news was all look good!

schipmom

Hi Everyone,

Went for my 6-month follow-up mammogram today and got the "all clear" news....thank goodness!  However, they only mammoed my radiated breast...they didn't do the other one.  I was under the impression they were going to do both sides and when I questioned the tech, she double-checked and came back and said no, they were only supposed to be doing the "sick boobie" side.  I have my follow-up appointment with my BS on Aug. 30th and will question him about it, but I was just wondering if those of you who have done your 6-month check have only had your radiated side done. 

Hope everyone is doing well and you are all enjoying your summer!

Deb 

June2268

Hi Deb.....I had a 3 month follow up from my 2nd surgery and they only did the "sick boobie" as well........In November I will get both done and be on a regular schedule going forward......Congrats on the good news.......YAY!!!

MaryNY

Deb: At my six month mammo, I only had the bad boob done. I have my 12 month imaging on Friday - 12 months since lumpectomy and six months since last mammo. This time they will do a bilateral ultrasound and a left side (bad boob) mammo. This is what my Rx says, but I was under the impression that they alternated mammos and ultrasounds. Not sure what my future schedule will be - I'm guessing that I'll have to go back again in six months.