August 2011 rads

Thanks so much everyone!  And thanks for the balloons and champaigne Janis!  You guys are the best (especially considering I did not receive even an acknowledgement from my bosses). 

MamaV....you are so welcome for the balloons and the champagne.  I think you definitely earned it.  I am so thrilled for you!!  Focus on healing now and think of something fun to do.   Big hugs hon!

Beana, I have not had any trouble with swallowing at all.  That does sound worrisome.  Have you talked to anyone there about it?  I remember someone else mentioned it, but docs said her breast only was being radiated and could not affect the throat.  Do you have a cold or allergies bothering you?  Please talk to your doctor about it!  I can imagine how creepy that must be.  I sure hope you can get an answer for this problem.  So many strange things seem to pop up during radiation. 

@ beana: you mean I will have WORSE hot flashes with Tamoxifen than I do now?? The chemo put me into instant menopause. You would think with as much as I have been sweating, I would lose at least a pound or 2 (instead of gaining 50 like I did!). LOL! Since I am 39, I am a good 10 years away from natural menopause. MY body did not like coming to a screeching hormone halt! LOL!

I also have chronic Vit D deficiency and take 5000 iU of D3 daily. It took several months of taking a prescription of 50,000 iu to get my levels up from 9 to 35.....still not where they'd like it, but much better than 9!!!

beana: I forgot to say that my RO asks me every week if I have any problems swallowing. He said that is very common with breast rads. Hope you got some answers today and it is better!

I don't think there is necessarily a link between vit D and bc. I was 1st tested several years ago and have been tested a couple times a year since. I also have fibromyalgia and there is a connection between low Vit D levels and connective tissue/autoimmune disorders. I know when my levels are very low, I hurt more. It is common for women to have low Vit D levels.

bb226....my MO requested a Vitamin D test for me as well.  He said it is because Tamifoxen and Arimidex can cause bone damage, and they want to make sure your levels are up to prevent bone loss.  I am not taking anything yet for mine.  I have no idea how much to take.  My booklet on radiation says not to take Vitamin D during rads.  It sure would be nice if someone would explain everything to all of us.

beana and sarahbob...nobody has EVER mentioned the swallowing problem to me.  I have not had it, but sure have not heard of it until recently.  I swear these doctors really need to work a lot harder on getting all the necessary information out.  How frustrating this all is with so many unanswered questions.

Kymm if you are reading this, please know I am thnking of you and I care.  I wish I could help.  I know how much you have to be hurting.  I am so sorry.

Irw333....I am sorry you had to end your rads abruptly.  I know how frustrated you had to have been with everything.  When you are having problems and not getting help, it feels terrible.  Hang in there hon, sounds like you will be fine.  Keep us posted and please don't feel you have to hold back here okay?

Irw33:  What an awful experience you have had.  Like julianna51 said, please do not beat yourself up.  It sounds to me like it is the rads center who failed you and you did not fail rads.  Why some RO's and their nurses are so lacking in compassion is beyond me.  I went through surgery and chemo without depression because I had competent and compassionate doctors, nurses, and staff. My RO and nurse, however, were two of the coldest people I ever met in my life and I was very sad all during rads.  I still shudder when I think of them.

Hang in there.  Your MO knows and approves of your decision.  Let the physical and emotional healing continue now.  Sending hugs to you. 

Yay for you Kate!  St. Johns has a great reputation as a cancer center.  My brother wanted me to come down there for treatment, but as you know the daily trips and follow ups with dr.s would have taken me away from my family up north. It did spur me to do a bit of research though, on equipment.

Elizabeth, thanks for your concern.  My husband is now on medications to shrink his prostate for 6 months and then will have a laser procedure to better correct things.   Enough health scares, please??  Now I have to go to the GYN and get things checked before I start the adjuvant therapy.  Not sure what direction to go yet.  Nothing I read makes me confident about any of it.  Just the idea of another test and waiting for results makes me cringe!!

IRW don't worry too much. Research suggests breast rad dose of 45-50 Grays or (45000-50000cGrays) for treatment of breast cancer. I think you had 44000cGrays or 44 Grays. You are right in the ballpark. I opted out of the additional boost. You too. I think you will do fine. More importantly your MO agrees. Celebrate that you are done and you got as far as you got!

You all are wonderful. Thank you so much for the encouragement. bb thanks for explaining makes me feel a lot better.. GiGil I hope you and your better half are feeling better soon... Elizabeth cold is exactly what they were.

Kate have fun in Nashville. I am so glad you are finished. MamaV 9 months? You inspire me. Congrats!!! Get your life back. You deserve it so much.

Pat I am blistered under my breast they would not give me anything but aquafor and Lidocaine. MO said silverdeen cream is not for radiation burn. I am concerned about infection as well. Just be careful and keep watch.

Merilee *Thinking Happy Healing thoughts while suffering. hehe It is enough to drive you crazy...

kymm...Gosh hon I am so terribly sorry for all you are going through.  I want to say congratulations on finsihing rads, but it doesn't seem appropriate right now.  Maybe down the road?  I just wish there was something I could do.  You have been on my mind and I know what hell this is for you.  Please try to post here and talk it out with us.  We love you and want to help!  For you sweetie......

I am finished, done, kaput, and so happy. As most of you know I am alone, my husband of over 20+ years deserted me a few years ago, so I am celebrating alone with a large glass of Chardonnay. The real party will start in Nashville Sunday. Juliana,Gigil,Sab,Irw,Pat01,and Janis thank you all for the good wishes, and Janis the balloons you posted on the Sept. board are so darling. Sab sorry you couldn't come to St. John's, because I would have loved to meet you. St John's hospital, in Santa Monica, Ca. with Dr. Wollman is the best. For those of you who haven't started, my radiation ocologist said that bad side effects could be attributed to outdated radiation equipment. St. John's has the newest and the finest. Have you considered that when you are talking about bad side effects?  Irw don't kick yourself you did 26 or 27 treatments which is definitely enough. Give yourself a pat on the back instead. Kymn I know what you are going through, because it happened to me. God never gives anyone something they can't handle. In a couple of years you will be with someone finer that you deserve, and you will not miss this jerk, and you will be so much stronger because of it. Ladies I do have a rash( doctor says not bad at all) and I am a little red, but that is all no pain, no exhaustion, no blistering, or peeling.Life is good! Hugs to all!

So sorry merilee. Surprised this happened in Lansing. I have been there and to east Lansing and it seemed so safe.

Merilee, that totally sucks! So sorry.

To Kate and to all of you other fine ladies who have crossed the finish line...hooray and hugs!