Summer 2015 Rads

klanders

Feeling bummed right now. Because of my boosts they've added 3 more days to my schedule. So instead of 30 I'm going for 33. To the normal person not in the middle of radiation that doesn't seem like a big deal, but to me it's huge. I know you'all understand! I'm living away from home during the week because of treatment so it's also that much longer away from home. And that much more skin damage. I finally found the blue CVS aloe with lidocaine (out of stock online and at the first store I went to) so I'm giving that a try. My skin is dark and rashy looking and I've had some lymphedema swelling occur so I'm seeing someone for that. MO agreed to let me start hormonal meds during radiation. It's gone well so far - except that I weighed in 3 pounds heavier in just the first week. Ugh. Wonder if this nightmare will ever end. 22 down, 11 to go.

Davis... we can vent together!

CAMommy

Oh I hear you. They only added 1 extra session to mine (21 instead of 20) and I wanted to cry. I ended up doing 2 in one day to make up so I could still finish on the same day because we were moving the very next day. My skin is so fried. 8 days out and still it is painful, weeping and raw. My underarm is better.

This is such a nightmare. I fully did not understand the amount of burn damage I would have after rads were over. ((cry)). I do feel like I am on the up swing and things are slowly getting better.

My RO said to wait a month after rads before starting tamoxifen. I'm not sure why but I'm not complaining. I am starting to feel depression about this whole thing. It's like now that treatment is over, and I'm so badly burned, I feel like all of this is real. And I'm starting to stress about my future health a little. I feel bloated and fat and need to work out but I hurt so bad that isn't happening until I'm healed.

ugh... all of this sucks. venting here. Doesn't help we just moved across country. Have no furniture until Monday are are sleeping on air mattresses on the floor.

queenmomcat

Klanders: my sympathies! I didn't have to live away from home during my treatment, and I'm getting the short protocol, but even so, three more tacked onto the end of my treatment would have sent me into a meltdown.

KBeee

Stupid question... For anyone else who gets (or got..... Most of you are done) drawn on with a Sharpie every day. Do they use that marker just on you or is it used on numerous patients ? Just wondering how they would avoid bacterial transmission

wrmbrownie

Where I go, they have 'my' sharpies in a Ziploc bag which they put in my 'cubbie' with my mold that I fit into every day. (That suddenly makes it sound like I'm in kindergarten, lol!) Everyone has their own.

JellyShoes

I just finished the breath hold part of my treatment (just 7 boosts til I'm done).....

They gave me my sharpies to take home. I have a little stack of treatment souvenirs upstairs, awaiting some sort of creative destruction when I'm done.

That's my long-winded answer to your sharpie question. Those are just used on you!!

littleblueflowers

Huh. Good question Kbeee- I think mine use the same pen on everybody. Its like a paint pen, though, not a sharpie. I'm gonna ask for sure on monday! Ewwwwwwww!!!! Cooties!!!!!!

queenmomcat

o-0. Group sharpies? feeling a little better about the tattoos.

littleblueflowers

Queenmom, I have tatoos and get sharpied...don't know why.

queenmomcat

Shrug. IDK. No idea then.

KBeee

I also have tattoos and get sharpied also. I have an "X" drawn with a sharpie that has to stay all the time (if not they do x-rays to redraw it) and then they use their laser things and trace he upper line of he bolus area with a dotted line before each treatment. I am sure it'll be fun in a week or 2 when the area is more raw. Today the tech pulled hte sharpie from their pocket. Once my skin is more raw, I will ask them.

BT828

Great question on the Sharpie! I have tattoos but they used a Sharpie to outline my 2 boost areas for RO to approve. By that time I was red & raw. The tech was totally gentle but I didn't think about whether it was new or used! Eewwww.

queenmomcat

(scratches head) Difference in practice? or difference in treatment?

DavisD

klanders and CAmommy-I'm sorry you're in the same boat I'm in but at least I don't feel so alone. I rang the bell today yea! 28 plus 5 boosts and very raw and sore. I totally understand about underestimating the extent of damage from rads. I went into it thinking this was going to be so much easier than chemo/some ways it was but the pain has been 24/7 since about two weeks in? They kept telling me it was normal but I'm starting to wonder just how many who made that assessment had even seen a nipple and skin sparing mastectomy w/implant?? Kbeee I think you mentioned someone telling you it would be tough because the skin is thin?

Anyway, I'm going to try to stay positive and never walk through those radiation doors again! thanks for sharing all and good point about the sharpie kbeee. I don't even remember, they didn't draw every time after midway.

KBeee

Diane, Congrats on being done. My PS mentioned that he was concerned about rads because my skin was so thin. I am concerned too. Keep me posted on how yours fares. I believe keeping it well moisturized longafter rads is important.

CAMommy

I have tats and they sharpied me everyday. I don't think it was my sharpie but I never asked. Where they drew never got red and raw.

I so hate the goop that oozes out. It feels gross and gets on my cami and just uck.

I've had a little bleeding to add to this too. I sent an email with pic to the RO nurse and she says everything looks good. No worries. Let her know if it doesn't get better in a week. Sigh. Another week of this.

My pain is a little better. But more and more skin keeps rubbing off.

My arm pit almost looks better. Just painful when I move my arm.

AndreaC

I have tattoos but have never been Sharpied. Interesting. I am at 24/28 now - hooray! Only one more week of staying with my mom! My skin is holding up well...supraclavicular and chest areas are fine, just pink. And a bit of a pinpoint rash on my chest. My underarm is quite red, hot and sore. No open areas though.

Congrats on finishing Davis!!!

Andrea

DavisD

Feeling better today just knowing I don't have to go back to radiation. Been extra vigilant putting on the cream-I'm using Silver Sulfadiazine 1% and it seems to give me the most comfort Kbeee

Still not sleeping well. I'm wondering if it's the Herceptin?

CAMommy

how long does it take to grow new skin over these open oozing areas

meezers3

CAMommy I hope everything heals quickly!

ChicagoReader

CAMommy -- for me, the answer was between 2 and 3 weeks. I also noticed quicker healing once I started using silver wound gel. (I used the Curad brand from Amazon.) It's now been a little over 3 weeks and the red, oozing stuff is all gone except for one tiny little patch.

It's really miserable when your skin is open and weeping, so I feel for you and hope yours gets better soon!

Keys-Plez

Audrea...I was supposed to be at 24/28, but the machine ET was down Friday. So I'm a day behind you now. But at least I got 3 days off from rads. BTW,what's a saline soak? It'd be kinda hard to get my armpit in a bowl of water. 😊

I swear it feels like they didn't align me properly on Thursday. All of a sudden I have fresh burn patterns where it was previously good skin. Ouch.

I really doubt that's the case, but it sure feels like it. Or maybe that's the way it works. You're cruising along with just a steady decline and then BOOM, the bottom falls out. Did anyone else have a similar experience? If that's the case, I'm in for a bad week for my final five. And we're going to be very busy at work with out of state visitors that will require a lot of moving about from different buildings. Floppy tatas and all. 😩

Keys-Plez

OK to all you veterans. I currently meet with my RO once a week. After rads are done, what is a typical follow up schedule or are we yet again passed off to another doctor? At what point is the primary care physician brought back into the mix?

Well I do meet with my MO Oct 1 to probably start AIs. But who does the follow up on the rads?

DavisD

CAmommy- I'm so sorry your having weeping. I thought mine was bad but at least it didn't do that. I think because my skin is so thin over the implant, no breast tissue, maybe it was extra sensitive? Sending you a soft virtual hug:)

Keys-Plez I'm supposed to follow up in three months with the RO. I'm not sure why unless I still have problems with my skin. I never felt she was that involved in my care to be truthful but yours might be different.

ChicagoReader

Keys: At the hospital where I'm being treated, I received a follow-up call from my RO's nurse 10 days after my last treatment. I have a follow-up appt with the RO booked for one month out. I will receive a written summary of my treatment at that appt.

I've already seen the MO and filled the prescription for generic Arimidex. I had a baseline bone density scan one week after ending rads and will start taking the pills if the scan is normal (haven't discussed results with dr yet; think she's on vacation or attending a conference).

I'll see the MO and BS every 6 months for the first two years. The nurse navigator said to schedule the appts so that they alternate. I think (not sure) that I'll be getting mammograms and ultrasounds every 6 months for the first 2 years.

Not sure how often I see the RO, but I think there will be some follow-up beyond the next appt.

The nurse navigator is terrific and I plan to go see her and ask her to walk me through all the follow-up I should be doing. I think it transitions to my PCP at two years out.

I'd be curious to hear what others are doing, too.

fltchr

I see my RO tomorrow, which is two weeks since finishing. She told her I'd be with her for a long time. She said it's her job to make sure I don't get reoccurrence in the breast and the MO makes sure it doesn't reoccur somewhere else in the body. She said each of them will track me. I guess I'll find out my plan tomorrow.

Keys-Plez

As soon as I was diagnosed my PCP scheduled an appt with a BS at UF (Florida). It's almost 3rd world medicine down here. He said go to the mainland. I stayed with DD while I had my lumpectomy at UF. I had an RO up there too for intrabeam radiation. The last time I saw my BS was 3 weeks after surgery with no planned follow-ups. Im doing my rads down here cause I couldn't take anymore time off work. I connected with an MO and RO down here too. Even though my MO and RO work in the same office they obviously don't discuss their patient's care with a team approach.

My RO at UF did schedule me for a followup in January. I am in a study for the intrabeam radiation.

I guess that's why I'm asking. I'm my own Nurse Navigator. And not really qualified for that.

Keys-Plez

fitchr...That's an interesting strategy. I'll see my RO tomorrow. Since this I my last week of rads, I need to have a good list of questions to ask her. It's always confusing when you finish one phase and are moving on to the next one. Or at least think you are.???

ORknitter

I had surgery 5/20, finished rad 8/14. I saw my RO weekly and his wonderful nurse whenever I felt the need. I started taking exesmestane 8/28 after a bone density test that showed "only" osteopenia. I have follow up with the MO this week along with RO and PCP (and just to make the week more exciting I see the dentist!). I see the surgeon next month for a 6-month followup.

My surgeon said she wants someone to look at my breast monthly, either her or the MO for the first year. I will continue to do yearly mammograms.

I know that everyone has different schedules but so far that's mine.

CAMommy

Since I moved the day after I finished rads I have to get new DRs. RO told me to follow up with a MO in a month. the MO will decide what to do next and who I need to see. RO said to wait a month at least before starting tamoxifen.