Winter 2015-16 RADS

Sunnyone22

Thanks Barbe, Disneygirl and Moondust - yet it IS nice to have that extra couple hours back! Well, it is so far - today was my first 'free' day.

Disneygirl, it seemed like the treatments were going by fast, but the last 5 kind of dragged for me. I'm the impatient type and things weren't moving fast enough for me!! I didn't have to drive far and everything was incredibly efficient at the rad center - in and out in a few minutes. But as I said in a previous post, being reminded every day of BC is not my favorite thing.

Moondust - good luck on your AI. Which one are you taking? I just started week 4 of Letrozole (Femara) and so far so good. No SE's. I know SE's can start later though so I'm staying vigilant. I read your explanation for wanting to pursue chemo treatment in recent and previous posts because I, too, was interested in your logic. I'll be interested in hearing what the San Fran. onco recommends for you. My tumor was 100% ER positive but very weak PR positive (only 5%). Low PR is a concern and is likely a factor in why my OncoDX is intermediate (20) and not lower. I was advised against chemo because the relative benefit was minimal and neither my MO nor the second opinion MO supported it. Also, my BC was ILC which tends to be less responsive to chemo. It was tough to decline chemo because I wanted to throw the kitchen sink at this BC. Instead I'll focus on healthy eating and exercise (AND the AI, of course.) Whatever you end up deciding, I know it'll be the right thing for you.

Barbe - I hate to hear that you fell through the cracks with your first diagnosis. You deserve so much better. It's nice to know you've got the Arimidex working for you now.

Duzy

Sunnyone22 congrats on finishing. I remember seeing your post with all of your flutes full. Must of felt great to see them all empty. Rest and take care of your skin as it continues to get worse before getting better.

Connie

Twnkltoz

congrats, @sunnyone!

I was relieved on the last day of treatment and did not do the "now what?" dance. I already had the "note what" all lined up! However, the past few days I've struggled with feelings of bitterness and sadness. It's finally sunk in how unfair this disease is and how much it took from me. I lost nine months of my life, and it'll take at least that long to get back to where I was, physically.

I'm horribly achy in my joints, and my shoulder muscles are just awful. It's so depressing.

Moondust

My skin is getting better and I have finally quit using the Miaderm.

Sunnyone, I have started taking a generic for Arimidex. Tonight will be my third pill.

Twinkl, sorry to hear how achy you are Just keep doing as much as you can - exercise is supposed to help. My shoulder is finally feeling 80% better but not quite normal.

Findaway

I have a question or 2 for you all about boosts. I had 5 weeks of whole breast and 1 week of boosts to my surgery site (about 12-1 o'clock). I never had any skin color changes around the area of the suture site BUT my axillary area got tan during whole breast and bright red and lymphedema after boosts. I never had any swelling after surgery (2 sentinel nodes removed) and this was not a treatment area. I also have rib soreness.

Soooo my question is when you got your boosts did you have skin redness over the surgery site? Did anyone have a similar treatment of whole breast and surgery site BUT have a lot of tan/redness in axillary as a "spillover radiation? Lymph issues?

I know everyone is different in all ways but I can't make sense of these "symptoms". I was very happy to have no lymph issues after surgery (and I should not have had with only the 2 nodes taken out) and since you can't feel radiation all I have is skin changes in strange areas that confuse me. Makes me wonder where the radiation went. Thank you for your time.

Moondust

Findaway, my surgical site got red during boosts and the week after boosts. Until then it was not red. The skin reaction can be one or two weeks delayed from the actual radiation on the area, I have heard. Lymphedema can occur any time after surgery, so it is very hard to say that yours was due to radiation. Unless they are deliberately radiating your nodes, you should not have any extra risk of lymphedema from whole-breast radiation treatment. My RO said that lymphedema can be a delayed reaction because after surgery it takes a few months for scar tissue in the lymph system to harden up and become a problem. I had some redness and tanning under my arm, but my RO showed me exactly where my lymph nodes were, and the field missed them by at least an inch. Don't be afraid to ask your RO for clarification.

barbe1958

DONE!!! I banged that gong so loud they heard it up in reception!!! No techs stood around except one who was passing. I had different techs every time so never really bonded with anyone.

I will stick around here for a while as I speedily heal. I have areas that are raw and some black areas too. The head guy this morning said I wasn't doing too badly "considering what we put into you!"

6feetover

Congrats, barbe1958!!! *BIG (gentle) HUGS*!!!

Sunnyone22

Duzy - Thanks!! Yes, I was happy to chew up that last pink gumball and down my 4th and final glass of champagne! I'm very lucky to have no real skin SE's from rads - Today is only day 5 after finishing and my 'tan' is substantially faded. No open skin or sores during entire time. But the post-rad fatigue is pretty significant. I started getting fatigued about week 4 but it really hit me about 2-3 days after treatment ended. Bad today too but I'm honoring it by hanging out on the couch in my fuzzy bathrobe.

Twnkltoz - So sorry you're feeling so sad and bitter. Are you seeing a counselor or have you considered it? If there's ever a time in life when you deserve profession help to regain a positive outlook, it's after BC. You're right, of course about losing 9 months of your life but you did what you had to do with strength and grace. I hope you can find it in yourself to look forward again.

Moondust - good luck with Arimidex. MO said that if SE's develop from AI's, they often go away after about 6 months so if you get any SE's, hope you can hang in there. I'm close to 4 weeks on Letrozole (Femara) and so far so good. Just some tiny, short, hot flashes. .

Findaway - Good questions. I can't speak to the boosts (I had mine during surgery) but as to the whole breast rads and tanning in the axillary area, I got that too. In fact, its the only part of the entire radiation field where the skin turned a little leathery. My RO said it was like that because of the friction from arm rubbing skin of that area. She advises her patients to "walk with attitude" - in other words, with that hand on the hip to avoid underarm friction (and look a little bad-ass!) And I agree with Moondust about lymphedema not being caused by rads.

Barbe1958 - CONGRATS!! I heard that gong all the way down here in southern California!!! Well done!

Duzy

Barb1958 - Congrats on finishing. Such a great feeling to have one more step complete.

Moondust

Barbe, congrats on being done!!! I'm so happy to hear that you are through!

DisneyGirl16

Congrats, Barbe!!! I'm half-way there and so far so good. Can't wait to be done, though.

KarenR0618

Congratulations Barbe, I bet it felt great to hit that gong.

I am just starting to feel not as tired and I have been done with rads for 2 weeks. Skin looks better. I never had open sores but I had rough itchy skin. I noticed my nipple had gotten bigger on the rad side. Looks really weird. I sure hope it doesn't stay that way.

barbe1958

Thanks ladies! I slept for 14 hours over the last 24....nice to not have to get up early. I've gained 2 hours of my day back!!!!

edwsmom

Congrats Barbe!

I'm right behind you. I have 4 treatments left.

There's no gong at my hospital but I sure can't wait to be finished!

I start Tamoxifen tomorrow - nervous!

barbe1958

I went back on Arimidex about 2 weeks ago and I seem to be doing fine with it this time. Good luck! You can GONG here.

Kkubsky

Yay Barbe1958! I didn't have a gong but I would have whacked that sucker hard too!!!!

Sunnyone22

edwsmom and barbe1958 - good luck on your Tamox and Arimidex. Although side effects of these meds are very real for some of our ladies here, others use them with few problems. Today will be the start of week 5 for me on Letrozole (Femara) and I've had no problems with it. I THINK I might have an occasional hot flash but they are so mild, I usually don't even know if I just had one or if I'm just hot from overexertion. I started using Femara when I was only two weeks into my rads (with my onco's blessing) and so far, so good. I hope you have similarly uneventful experiences going forward. (Barbe, second time is a charm, I hope!)

Twnkltoz

congrats, barbe!

I'm doing better emotionally. I am not seeing a counselor, but after talking it out with a couple awesome and insightful people who validated me and let me vent, I got past it. I'm sure I'll have more bad spells, but for now I'm good. Two more sleeps until vacation!

barbe1958

Twnkltoz, I think it's just the vacation you need!!!! Envious here....... do us all proud and have a WONDERFUL time!!

StefLove

Hey ladies! I haven't been able to keep up with the thread as much as I want to but I do read as much as I can!

I'm about 3 months out of radiation. Does anyone else thats a few months out still have a tender radiated boob? Most of the time it's ok but once in awhile it's tender. And if I'm poking around and pushing harder (feeling for any weird lumps etc), it definitely HURTS when I hit some spots. I see my MO in two weeks so I'll let her know but wanted to see if anyone else had this too?

Moondust

StefLove, I am almost 4 weeks out. My boob does not hurt, but then again, I don't poke at it very much. I do have lumps, but I know that they are either scar tissue or small encapsulated seromas which will eventually resolve. I'm giving it at least til my next BS appointment in August to just let it mellow.

barbe1958

I have black skin. My surgical wound is festering with pus. I have huge raw areas that weep. Am I doing okay????

Moondust

Barbe, my surgical site got much redder the week after boosts. But the pus you have is disturbing. I would definitely give the office a call about it! Silvadeen seems to be what a lot of women have used for weeping areas. Good luck and keep us posted!!

JuniperCat

Barbe, you may want to put a call in to your RO & make an appointment right away to check your skin.

barbe1958

I've got Flamizine or something that is an anti-biotic that I put on the raw skin. Thinking I'll pop in to the cancer centre while I'm in Windsor on Monday getting my pacemaker checked out after rads! thanks.

shiny

good! Good idea Barbe!

X

Shiny ( sorry ladies for piping in!)

Be good to you all.

Bestestest wishes,

Shiny

Sunnyone22

Moondust - Any updates from your 2nd opinion on chemo? Have you had the appointment yet?

I noticed from your profile that you started AI on 4/22. If you do chemo, will you stop AI during treatment? I read somewhere in my research that standard practice is not to do chemo and AI at the same time as chemo is more effective on rapidly growing estrogen-positive cancer cells whereas ER+ cancer cells exposed to AI don't reproduce as fast (if at all) due to the absence of estrogen, the production of which is blocked by AI.

If you don't mind sharing, please keep us posted on what you learn from your second opinion.

Moondust

Sunnyone, I am happy to share anything I know! The second opinion paperwork, which has been transmitted to UCSF on the 20th, got "lost in the mail", which I didn't discover until I finally reached a live person at UCSF on Thursday the 28th. Leaving messages didn't work. My MO's office faxed everything to them again Friday morning. I think everything is back on track now. I had a voicemail from UCSF to call them on Monday. I hope they will see me soon, but I don't know until I call tomorrow. I am very curious about what UCSF will say about my case, and I will let you know!

I started the AI just in case the second opinion agrees with my MO about not having chemo. I specifically asked her if I could start and then stop if I was going to have chemo, and she said yes. She said it would take about 2 weeks for the effects to wear off so that the benefit of chemo was not impacted by the AI. I am feeling pretty good so far, but I've only been on the AI for a week.

Sunnyone22

Moondust - the part about stopping AI makes perfect sense. The part about losing the paperwork - frustrating!! We all want to 'get on with it' when facing treatments and lost paperwork = treatment delay. Sounds like things are back on track tho.

I think you were smart to start AI when you did - It's an effective systemic med and it's nice to have that working for you while you wait to hear chemo advice. Good to know you're feeling good on AI so far. I'm a month into Letrozole (Femora) and don't really have any big problems either.

Thanks for the update! Let us know what UCSF says.