May 2012 radiation

BLinthedesert

Hi Ladies, hope everyone is doing well.  I am in San Diego for a big conference -- I am on the board of directors for professional organization so I have to come out a couple days before the actual conference starts -- but the good news is that it is in San Diego!  And, I am on the 30th floor of the hotel with a spectacular view of the bay and downtown (perk of being on the board is that they give us choice rooms!).  Life is GOOD!  

Thinking good thoughts for all of you! 

julz4

BL just popping in to say have a wonderful time!  Enjoy that view!

mckenna

sb, i live in the steamy midwest, my kids just go to a poor, old catholic school in the city.  still don't see how they are going to start if this 100+ weather keeps up.  how is your skin? any more healing? how is your sister feeling?

BL, hope you have a nice time in sandiego, they have great weather

hope everyone is doing well.  my edema is back ;( i see the RO next week, so i am hoping they have some suggestions for me.  i want to know if/when the cancer boob will ever just feel like a boob and not having something going on that attracts my attention to it

sbelizabeth

Mckenna, I know how you feel!  I'm so looking forward to NOT paying attention to the left side of my chest!

My radiation wounds are gradually healing up, but boy, it's slow.  I'm still wearing soft, old tee shirts and a big, button-up shirt on top.  Everyone at work must think I threw away most of my wardrobe.  Kane's doing fine.  I'm so proud of her.  She threw a scalping party yesterday and all of her four adult kids and their spouses came.  Her husband and three sons shaved their heads to keep her company!  I think she looks beautiful with her gorgeous eyes and pretty head.

BL, I bet San Diego was a nice break from summer in AZ!  Did your conference go well?

Jerry and I were riding our bicycles to church yesterday morning and he crashed.  He pulled off his Camelback to zip up a pocket while he was riding.  The Camelback slipped down his arm and got caught in his spokes.  I love this man madly, but what a doofus!  He broke his scapula--the shoulder blade--and he's just miserable.  His helmet cracked in four spots and the asphault scraped the logo off the top.  What a great testimonial for head protection while cycling!  

Mckenna, is your edema a result of the radiation, or have you had it for longer than that?  Sorry you're having to deal with more discomfort.

Have a great week, everyone!

Neeners815

Hi everyone!

BL - I love San Diego - especially the cute downtown area.  Hope you got to have some fun besides the work!

McKenna - geez you really are going through a lot.  So sorry.  I hope the RO can give you some good help.  My boob is still peely and winking.  I don't think it's ever not going to get my attention, but I'm not thinking about it all the time at least  Baby steps, I guess.

We're planning a weekend away this weekend.  Just two nights, but I can't wait!  In other news, I find out this week if there's anything going on with the thyroid.  It does run in my family so i guess I wouldn't be surprised.

Have a great week, everyone! 

sbelizabeth

Neeners...your boob is winking?  I'm trying to picture this, without much success.

Spokanellie

Thank you, SB! The question we were all wondering but were afraid to ask. 

Susannah - update? 

I'm progressing swimmingly. MO recheck last Thursday - flying colors. Recheck this Thursday with RO's nurse practitioner; expecting good results there, too. I'll have a new baseline mammo at the end of September for Bertha (the somewhat still swollen affected one). 

mckenna

now we have winking boobs  

i had adema that at first the RO and my original BS thought was an infection (original bs said it was a bug bite and i was a nervous cancer patient, which is why he is not longer my surgeon .  when i got a second opinion with my new BS she said it was edema from surgery (can happen after surgery particularly with larger boobs) it got very bad the first 2 weeks of rads but then it went away (i think it was hard to tell because then my boob got red, itchy and angry) but it is back now.  not sure if there is much they can do.  i did not have lymph nodes removed so not sure if a lymphedema specialist woud help  or not.  meet with ro next week and mo and bs in sept so hopefully someone will have an answer. 

spoke glad to hear things are progressing well.  hope everyone else is moving along swimmingly!!!

have a nice day!

Dizzy215

Checked in with my RO today - everything is fine.  She said I will be seen by one of my 3 docs (RO, MO & BS) every 4 months for the next 3 years! New baseline mammo for the right boob in Nov and just heard that my mammo office has now got the tomo machine....so important for those of us with dense breast tissue.  Feeling great!  

Spoke, great to hear you're doing well too! McKenna, I hope your swelling subsides soon. 

Neeners815

Sorry - winking NIPPLE.  Hahaha.  It winks up at me like we have this secret.  

SusannahW

Spokane...thanks for asking! I finished my rads on Friday, felt depressed and anxious, but am doing much better now, no more, or at least fewer tears. My fatigue is lessening, starting to feel like I'm coming back. No skin issues. Still a long way to go emotionally. I see my bs tomorrow, mo on Tuesday. Frightened about starting arimidex.



So good to hear of your steady progress with mo and ro!

nancyjac

McKenna....is your edema generalized or specific "pockets"  I had the latter after surgery and surgeon did an ultrasound and determine they were seromas....pockets filled with serous fluid. She did a needle aspiration but it refilled pretty quickly.  My therapist worked on them when I was getting lymphatic massage and it has gone down considerable but not completeely.

mckenna

nancy, at first it was on the inner under side of the breast (opposite side of lumpectomy scar)  they did an ultrasound initially and saw nothing.  it seemed to be better but now it is back and seems to be in the under/inner side but also on the outer side of the breast under the arm (it feels much warmer in that area too). i have an appt with ro on tuesday so hopefully they can help me sort it out

BLinthedesert

Hi Ladies -- I have missed you -- and your winking neeples, lefty and righty names (I love Bertha, Spokanellie - although the name does conjure up a breast on the larger size, mine are more "compact" and would need 3 letter names I am afraid)!!

Congratulations on finishing rads Susannah!!  YIPPEE! 

The conference went well.  I did not get to attend many sessions (it is a huge conference, about 45 concurrent sessions at a time -- about 6,000 attendees -- and yes, San Diego is recovering from the onslaught of that many geeky statisticians at one time).  I had to go a couple days before the conference started, and during this two day period there was a sales conference in the hotel that I was staying.  It was for a medical device and all the salespeople were tall, attractive 25-somethings year olds, dressed to the nines and partying until the wee hours of the night.  Then, on Saturday "our" conference attendees started to arrive.  It was quite a difference in the lobby I must say.  And while there are many statisticians who also party into the wee hours, the numbers are smaller in magnitude, and they are, for the most part, NOT 25 somethings  dressed to the nines (but rather poorly dressed nerds looking for a free wifi signal ;-) ).

Yikes mckenna!  I hope all this stuff goes away soon ... that is just horrible.  

I am worried because even though my skin looks great, and really I feel a lot better, I have had these problems with shortness of breath on a couple of my runs.  I am sure it is nothing -- maybe I am running too hard too soon or something -- but it freaks me out.  My first follow-up is next week and my first FU mammogram is the week after that, and my first BS follow-up is the week after that -- in my opinion, that is just too many doctor appointments!

So nice to see all of your posts again. 

Neeners815

BL - interesting.  My BS said I don't need to have my next mammo for 6 months from when I finished my rads...?  I do go to have my skin checked my my RO in a couple of weeks, though.

I haven't gone back on my tamoxifen yet.  I spoke to my BS and we're still waiting to see what they find out from my heart.  After that, if it's not an allergic reaction, we're still talking about NOT going on it because of the SE.  It's a hard decisions for me.  I posted about it in the DCIS thread, too, but only one person has responded so far and she's in the same boat as I am and she didn't go on the tamoxifen.  I hate making these decisions. 

BLinthedesert

Neeners, I KNOW!  My RO said she wanted a "new baseline" about 6 weeks after treatment.  My BS scheduled the mammogram originally and called it a "follow-up" mammogram (6 months from my last mammogram).  I think my BS is more worried about my other breast (not "Lea" -- my right one ;-) -- few initials for little breasts).  I have a follow-up MRI in October for something or other that they found in my MRI in March (6 month follow-up).   

jittersmom

my BS said October for a mammogram because my boob had been through so much! My RO appointment is in a couple of weeks and he is letting me know when he wants me to go so i probably will end up going the same time to make everyone happy! I have to tell you i dread that first mammogram!

schatzi14

jitters...me too and it is on the 20th....scared silly.

mckenna

i have my first mammo end of sept, it would be time for my yearly mammo but also time for my 6mo baseline so not sure how they are going to work that.  i get mammo's once a year and see the bs at the same appt.  a mammo did not catch my cancer so i am not as nervous as i am about my yearly mri which should be in march or april.  however, with the way my boob still feels, i am a little nervous the mammo may hurt and i have never really had pain with one before.

hoping everyone's first mammo's go smoothly.

mckenna

neeners, forgot to address your tami issue.  is there another anti hormonal they can try?  i have even heard generic vs name brand can cause different side effects.  God knows i hate this tami, my body just does not feel like me anymore but they are even giving tami to people with adh so i feel like with a DCIS diagnosis, it would be beneficial too.  that being said, heart issues are nothing to mess around with.  such hard decisions. tired of hard decisions

BLinthedesert

I am pretty sensitive too (boob-wise), and not really looking forward to any of these visits. Mine was found on ultrasound and confirmed on mammogram... and I doubt very much that anything will be going on at this point... I don't like the mri's though, so I hope to avoid future ones and hope they are wrong about whatever they think they want to watch growing in my "good" side.

julz4

Seeking info again! I thought I read somewhere, not sure where now, that some have had cough & sore throat. I feel like it might turn into Brohncitis, but the cough isn't real bad. It comes & goes. Feeling really run down. No shortness of breath. Probably heading to Dr. tomorrow just to make sure! I HATE this! Cancer so SUCKS! I haven't nearly been through what most of you have!

BLinthedesert

hi julz ... I know!  I am always worried about every little thing being a side effect.  There are some women who get radiation induced pneumonia - but this occurs somewhere between 1-6 months after radiation.  Lung fibrosis usually doesn't show up for over a year.  Sometimes a cold is just a cold ;-)  (that is "my" mantra).  I hope you stay healthy.  Are you finished with radiation?  If you are, then try a lot of vitamin C ...

what ever happened regarding your Her2 status??

julz4

Hi BL...I am 20/33 now. I wish I could kill it with the C as I have high potency powder to use. What I would give to have a big glass of OJ loaded with the stuff. But I can't due to major GERD issues also rearing it's ugly head with day one of my RADS! Not fun. If just a cold or even bronchitis as I have had this a bunch over many years. The fatigue just compounds it all. I been in bed all last night & most of today. Dragging my but out of bed to go to work tonight. It's my 6 night on week & have already called off once because of the fatigue. My FMLA papers are written so I can only call off every other day. I had off last night. So I should feel rested enough! LOL! Right! Plus it's not in the papers for the cough & sore throat!

Thanks for the info I thought that it something like that. My left lung if definitely getting hit at the outer edge as I have seen the films to prove it. I wasn't too worried as it just feels very upper respiratory. But my mind is a sieve these days & info leaks faster than I can retain it. Sheesh & I'm only 45. Wonder how bad it will be at 55!

sbelizabeth

Julz, I developed a BAD cough about four weeks into rads, and to this day I don't know if it was a cold or something related to radiation cooking a lung.  I didn't have a sore throat or head congestion, so who knows?  I'm 99% over it now, so I'm going to chalk it up to a respiratory infection, but it very well could have been the rads.  Yours really sounds like a cold, though, and I hope you're better very soon.

BL, hope you loved San Diego and that you're running without any shortness of breath!

Anyone doing Femara?  I have developed enormous ankles due to swelling, something I've never before experienced.  It has to be the Femara, I haven't been doing anything else different.  Yuck.

Best wishes for all who are gearing up for mammograms.  I'll get righty "grammed" in a few months, but lefty's in a jar on a shelf somewhere.  If they want to gramm that one, I won't need to be present.

Have a great weekend!

julz4

SB I've had the lower sore throat since 2 weeks ago, some days worse than others.  No head cold stuff.  I just ment in my air way not lungs soreness.  I hope it doesn't get any worse.  You should let your Dr. know about the swelling asap if you haven't already.  I know some of these Meds can cause heart clot risks.   

sbelizabeth

Julz, I posted my ankle swelling concerns on another thread and based on others' experience, I'm pretty sure I'm taking in too much salt.  It's a shame because I love salty stuff, but it's just another discipline I'll have to develop.  No more pretzels for breakfast!

AEM47

I too got a cough about 2 weeks into radiation.  It didn't stop untill about a week + after radiation stopped - It was definitely from radiation for me, I was very inflamed all over on that side....  How could it not be related? 

BLinthedesert

AEM -- the "longer term" lung SEs usually aren't suppose to start for a few weeks after radiation ends -- but heck, there are so many people with issues I can't believe they are not all related somehow.  My guess is for you guys coming off of chemo your immune systems were so low that you are more likely to pick up things (viruses) - especially if it got better once you recovered from radiation.  However, the pleura around the lung most likely DOES get inflammed - so it definitely could be related.

I have to admit that I am not very happy about my exercised-induced shortness-of-breath.  However, I am keeping my fingers crossed that it is going to be temporary.  I see my RO next week, and if she isn't willing to get me an inhaler then I will go see my PCP -- I just want to see if it works.  It is not bad all the time, but if I run a lot of hills it can hit and once it does it is hard to recover (while I am running) -- it really feels like I can't get enough O2 - or take a deep enough breath to get enough O2.  If I did not know any better I would say it sounds like exercise-induced asthma-- but I have NEVER had this issue before -- so, I hope it is temporary.  Plus, I had no problems at all until last week (~5 weeks post radiation).  If I weren't a runner I might not even notice it - it is really because I run.  Anyway - I am still pretty happy with my recovery, this is just another blip.

SB -- have you tried compression socks?  They make some that look just like trouser socks. I have had swelly ankles all of my life - and compression socks (straight from the drug-store or now the sports store since they are all the rage with runners now) have really helped.  That way, maybe you don't have to give up pretzels ;-). 

sbelizabeth

Thanis for the idea, BL, I'll check out the compression socks in the sporting goods store.  I've made a deliberate effort to lay off the salt today and I can see my ankle bones, which was encouraging.  I think spending my working day sitting at my desk for 9 hours non-stop is probably not a good idea, so I'll try to make time for a couple of short walks.

Is your running any more strenuous than usual?  I think it probably takes a few weeks to shake off the radiation fatigue and irritation of the innards, but I understand your concern.  I'm not up to par on my bike, either, and I've been riding all the way through treatment, so it can't be because I'm out of shape. 

Looks like it's a nectarine for an afternoon snack.  No Doritos.