Winter 2015-16 RADS

LiDu

Gosh that's kind of worrying, Creativevintage. I've just started week three and I'm already red and splotchy. My RO prescribed silvadene cream yesterday. I'm working full-time again, and I don't have much wiggle room with taking time off. I'm also getting herceptin treatments and PT twice a week (in addition to PT at home daily). So far, my energy has been pretty good as long as I take it easy in the evening and get plenty of rest. Still, I'm concerned that my skin is so red after just 12 treatments. My OR says I should have 25-31 treatments.

mapagail

Uugh! Went to appointment, RO wants to give me another week, incision hasn't closed up all the way. She said if we starts rads, incision will not heal.

HappyHammer

LiDu- sorry about your skin. Confused about the Silvadene though- can it be used during rads? Know some use it afterwards for burns but since it's "silver" will it not cause issues?

Mapagail- know you are frustrated. Sending you a hug and healing mercies for that incision!

Cubbie2015

I have now had 8 treatments. I'm a little pink, but nothing too notable. Other than that, I don't have any other side effects. I still do not have a regular appointment time, or had much luck scheduling beyond one week at a time - in fact, all my appointments for this week got changed again on Monday. I think I am going to have a different time next week, but I need to confirm that.

Mapagail, I had to wait an extra three weeks for my mastectomy incision to heal further. One week isn't too bad, but I know how you feel about wanting to get started.

octogirl

I've just finished number ten of 16....seems like the time is flying by. Just four this week, and just four next week as well as they are closed for New Year's and I have to skip Monday as well due to a work commitment. I've also had some scheduling issues....but since I am not working this week it is easier to go with the flow. I did ask for an early appointment on New Year's eve as we are going out of town for the weekend: got 7:45 am. Sigh. Be careful what you ask for....

So far, skin problems have been minimal, just a little pink for me as well. I had to have chemo delayed for healing of my lx incision, so I know the feeling mapagail...it is best to be healed first, but frustrating not to get it just started and then over with...

Hugs;

Octogirl

lindab142

Patty, I'm glad you got to rad and back safely. The wintry mix added a white-knuckled ride home for me Monday. I worked from home today before I was scared to drive again.

mapagail - sorry to hear that incision isn't closed. I had an issue with redness and swelling after my surgery, so my radiation was delayed too, but I'm thinking it works out in the end. Praying for you to heal.

I'm having an anxiety attack. I'm pretty nervous during radiation and seem to tear up after on the way home; want to cry. Today, I did a visualization exercise after that helped earlier- soothing blue gentle raindrops healing my skin and body, to take away the heat I feel (on the inside).

Glad to say I'm not red, just a little pink. Rad nurse asked Dr. and I can continue to use anti-inflammatory cream that surgeon gave me. I asked about aloe and calendula and she said RO said I can use aloe calendula, so now I'm thinking someone got signals crossed and am scared to try something else because of irritation I had that delayed rads for 1 week.

Meet w/RO tomorrow, so find out how many sessions and more about lotion.

Thurs. my appointment is at 7:30 am so I have to work from home and take a very early lunch.

3 of our cats are lining up in the bed meaning that I have to sleep in a different spot. Plus, being anxious doesn't do much for sleeping. Hope I can relax and sleep so I can work tomorrow.

Octogirl, good for you ... going strong and just a little pink.

Linda

ivy2

Thanks for the welcome! I saw the RO today and she said I'll have 16 sessions and 5 boosts. Probably start the end of January as they like to wait a minimum of 4 weeks after surgery and I still have to see the MO to discuss endocrine therapy. She totally nixed the idea of paddling or kayaking or any swimming, no water or sun! Ugh, well I can go in up to my knees if there are no waves and I'm wearing a muumuu

Cardinal

good morning and hugs to you all - treatment 7 of 20 yesterday; definitely seeing some colour changes, sensitivity (greatest on nipple area) and now misshapen with a definite enlargement on the treated side (swelling?) which I hope is just a temporary thing. Lived it up in the hot tub in early treatment days - now will just gaze longingly to future return feeling a bit sluggish, but managing to keep up with hour long hikes daily - the time outside in nature really calming and restorative. Very grateful to have this time off work (physical job) and overall, so far, so good - techs are great, and I'm trying hard not to stress about the overdue MO consult Jan 8, with its unknown further treatment.

The strength of this group is so supportive - warmestwishes to all of you!

Creativevintage

LiDu, don't worry, my RO expected a much worse skin reaction for me as my skin is paper white and very senstitive and that is no exaggeration! The Mepelex dressings have helped so much that I was able to get a good night's rest last night. I did not realize how much I was waking up because I was itchy or my nightgown was irritating those areas. It is wonderful to feel so rested. Of course it is also good because I have a full day today. I had my treatment this morning and I have a port draw in an hour and then I meet with my MO then I get my Herceptin infusion this afternoon. I will definitely need a nap when I get home!

StefLove

19 of 31 done! starting a day or two ago I started noticing the 'tan line' by my collarbone. my nipple area and upper chest area are starting to get itchy and I'm noticing little red dots all over (which I was told are my hair follicles being angry). Ready to be DONE! 6 more 'normal' rads and then onto boosts, which I'm hoping don't cause too many additional side effects. I'm still going to the gym when I can but I'm worried that my sports bra will start to irritate me more and more soon.

octogirl

Ivy2: one of the hardest parts of this whole process, for me, has been staying out of water! I am an octo(pus) girl, water is where I live! :-) Alas, BS, MO and RO all agreed: no pools or hot tubs during chemo or rads.

I am going to cheat just a bit this weekend (shhh....don't tell). In honor of the New Year's I am going to jump into the Pacific with some dive friends. However, as a concession to both bc and the water temps, I will be wearing a drysuit. A drysuit does just what it sounds like: keeps you dry. The only part of me that will get wet is my head and face (will have a hood, but it doesn't keep the head dry). So, not too much of a cheat. Can't wait! (won't be diving; just swimming around with a mask or snorkel to get the feel of the water...)

I did want to mention one strange thing that happened yesterday: I started to feel a high level of anxiety right in the middle of the tx. My heart started pounding, and it took every bit of my self control not to jump off the table. For some reason, I didn't feel 'right' in terms of placement. Haven't had that problem at all before, hope it isn't an issue today. Going to try visualization also.

Hugs to all;

Octogirl

keepwalking

Mary - Finally I am ready to go! I begin treatments on Jan. 6. I am having 16 whole breast + 5 boosts. Unless we miss a day (snow in Jerusalem anyone?) my last day should be Feb. 3.

I had my simulation today and it was so much easier than I expected! The sweet young woman got me all situated as comfortable as it could get - then put a nice heated blanket on me - and into the CT I went. Since I was a good girl and didn't tweak a muscle, the CT only took about 15 minutes (Justmaximom - mine was also just CT and no tattoos.)

Then came the fun part (hint: I now look like I am painted up and ready for Mardis Gras!). She drew all over me with a red sharpie-like pen, then traced over with what looked like black tar and smelled like a strong paint! So now I have red and black warpaint on BOTH breasts (only one will be radiated, but she said the other was so that they could see that I was symmetrically aligned).

I only have a specific time the first treatment; for the rest I can come anywhere between 7 and noon. I do see the RO once a week. I will see the nurse after the first treatment to tell me all about the side effects and what to do and not do. But the technician did confirm what the nurse navigator had told me - no creams or lotions to the irradiated area throughout the treatment! (I assume that means unless prescribed by RO as a result of side effects.)

octogirl

Rina, while I have never been to Jerusalem, I was once in Amman, Jordan when it snowed about two or three inches. A magical day.

I like the idea of coming anytime between 7 and noon. Given how messed up scheduling has been, I wonder if that wouldn't work better for other offices: just come, get a number, wait your turn....I bet it is actually just as efficient though I suppose it could mean a longer wait time if everyone decides to come at the same time one day. OTOH, while I didn't have a wait yesterday, the day before they got behind and I ended up waiting an hour and a half past my scheduled time! Was very glad to have my e-reader....can't imagine the system that your office uses being any worse, but will be interested to hear your experience.

Octogirl

justmaximom15

Had my first treatment today and it went pretty smooth. Traffic in St. Louis is crazy right now due to all the flooding so I was almost late and that stresses me out. I popped a xanax as soon I got there so I was pretty calm during treatment.

They took x-rays and marked me up a lot, honestly I didn't even know when I was getting the treatment. 1 down, 32 to go!

keepwalking

Octogirl - Sorry to hear you got an attack of anxiety in the middle of the rads! It is great that you were able to overcome it - that should give you encouragement that you are the one in control and you are strong!!! I was afraid that was going to happen during the CT, but I just started singing to myself (in my head) and it helped.

Yeah, I also thought that there could be an upside and downside to the 'come as you want' method. I hope that I will be able to find a time that is not as popular and won't have many people. I'll let you know how it goes.

Last year we had TWO snows! They didn't hang around long, but were beautiful. We actually have a chance of snow this Friday!

Enjoy your (shh!) adventure this weekend!

tshire

Starting my first treatment today... nervous.

I picked up the aloe gel from Trader Joe's as well as Miaderm. Should I alternate their use morning and night, or is there a better way?

Wish me and my lily white skin luck!

keepwalking

Tiffany - Hoping your skin is saved just like your hair was during chemo!

So, I am very fair-skinned as well and most of these parts have not seen the sun! Does anyone know for sure whether there actually is a correlation between fair skin and radiation damage? It seems to me that it wouldn't necessarily correlate because it is not a burn from the outside, but damage to the skin producing cells. Unless maybe the same genes that give you fair skin also make you more susceptible to the rad damage? Has anyone asked this question?

Peachy2

Tiffany, you can do this! Sending you good thoughts. I haven't used aloe, but used the regular Aveeno at night and after treatment for the first two weeks. I switched to heavy-duty Aquafor on week 3. As silly as it sounds, I put on a bunch of cream then stick a flat Kleenex over it so that it doesn't get on my bra or top. Then get dressed as usual. I've been itchy, and using the hydrocortisone that the nurse suggested has helped a lot.

Keepwalking, I am also very fair skinned. (If I'm buying foundation makeup, it's always the lightest shade or the second one to it.) All of the techs, nurses, and doctor told me to expect to have what amounts to worse than a sunburn because of my skin tone. Today was treatment #25 and doctor exam day. Before examining my skin he said it should be at its worst now. I'm flushed and look like I forgot my sunscreen. Seeing it, he said that it doesn't look bad and could still get a little worse.

JerseyGirl22

Hi, I'm joining this thread if it's ok... I have my staging for rads on Monday, Jan 4th, then the simulation the following week, so I'll be starting my 6 weeks on Jan. 18th. I'm a bit nervous, but feeling good about moving forward and getting this part done. I've been having anxiety attacks lately, but I think it's just everything hitting me... I had my chem, did BMX, no recon, and now onto rads and Herceptin through July... The surgeons say they got everything, rads will mop up, and soon I'll be on my way...

So, my plan is start date Jan. 18th, 5 days/week for 6 weeks... radiation to breast and lymph area, with the final week consisting of boosts to the breast area only.

Thank you for being out here!

octogirl

on the question of correlation of skin color/tone and SEs: I had actually read somewhere (I think it was on one of these boards) that the opposite of what you'd expect from sunburn is true, and that dark skinned women tend to do *worse* than those who are very pale. I have no idea which is actually the case (if either) but I can tell you all that I have relatively dark skin (for a white girl :-)) that doesn't easily burn, and before rads started my RO was very concerned about SEs, and told me I was at high risk. He didn't really fully explain why, but I did have healing issues after the Lx surgery which was a factor. and so far, so good. RO said my skin looked 'wonderful' when he did his exam on Monday....

My guess is that it could be like everything else we experience: very individual. Tiffany, good luck! Just remember how nervous you were before chemo, and how that turned out relatively well.

Octogirl

Shopgal2

JerseyGirl22 I also have my rad sim next week, but on Tuesday. I have to go the week after for port films (don't know yet what that is), then start rads Jan 18th. We are rad buddies. I also have 30 treatments.

Octo glad to read your skin is doing well.

HappyHammer

JGirl and Shopgal- With all you/we have gone through, I think anxiety is often part of it. It's hard not to worry about what might happen and the think about what HAS happened that has been so life altering. I take part of an Ativan before each session. 17 down and 13 to go- last 7 will be boosts. Sounds like we are all on the same rads schedule. Glad y'all can be "rads buddies"!

Octo- think you are right about it all being individ responses....glad you are doing well!

Jabe

octogirl: I had the same panicky feeling one day a week or two ago during rads. Good news is it hasn't happened again. I too talked myself down and listening to the music helps. Are you in Chemopause? If so that can increase our anxiety...

PattyMeg

Hi ladies, I was worried about my skin too; fair Irish skin, so I looked into it a little and the effects can be worse for fair skinned women. I don't know why, because like keep walking pointed out, it's not actually a sunburn. I had treatment 7 today of 16 and 6 boosts, and already my skin is really pink, with red dots, itchy, and stings a little. I just got some Benedryll, just in case. My RO said he was going to try the 16 treatments (higher dose), but didn't know if my skin could take it, so he might alter treatment midway to a lower dose and more sessions. I guess if any of you with fair skin, get too harsh a reaction, your RO will do something similar. Has anyone used cornstarch for itchy skin? I thought I read that somewhere. Tiffany, good luck with your first treatment, and the rest of you lovely ladies as well. Patty

octogirl

Hi Jabe:

No, not in chemopause....I am almost 62 and that ship sailed for me a long time ago, before chemo....but today i had no problem, other than that my arm got a bit more sore being above my head than it usually does. but otherwise, I was fine, no panicky feeling like I had yesterday. Go figure. For some reason it all felt a bit, or more than a bit 'off' yesterday.....But with only five left after today, I feel like I can do this! (Honestly, compared to chemo, it feels like a piece of cake...but again, we are all different.)

Hugs to all;

Octogirl

sos1125

Had lumpectomy on 12/7 and am scheduled for a radiation oncology consult on 1/12 (during which I hope to get the actual therapy dates).

Question for the group, especially those who have already started therapy: Did anybody have to get a mammogram before starting therapy? Out of the blue I just got notice that I am scheduled for a "film consult" next Monday at which time the radiologist will go over my prior mammogram and MRI films and "see whether additional imaging is needed." I asked whether that meant mammography and the appointment coordinator couldn't answer that. Seems pretty awful to contemplate that my healing breast may be squashed between two plates short of a month past surgery, really hoping the "imaging" is an MRI or ultrasound.

octogirl

Hi Sos...I had CT scans at time of sim, which I think is common...apparently it is part of the planning process to figure out the correct dosage, how to aim it, etc. I think looking over prior images is also part of that process (my RO did ask for and review all my records). But a mammogram, I didn't have, and I suspect that isn't what was meant......let us know though....

Hugs;

Octogirl

Thr_yet

I am joining this group - oncologist appt in January and the preliminary radiation consult a week later. I have very fair skin (Danish heritage) and am worried about this - always was sunburned when I was a child. Partial and SNB last week so I'm finished with that part and blessed with negative results from pathology. I started Femara before surgery and worry because I already have osteopenia. Onco type ordered and hopefully the results will be in before the onco appt. I truly think I'm still in shock over the diagnosis and now all the appointments that I am making. We live over 50 miles from the nearest radiation therapy facility so I will also be facing some drive time and winter road conditions. I am trying to research what to expect, but so many articles are just that - stats and details. Wish I could crawl under a shell and find that this was a bad dream but I know that's not going to happen.

Moderators

Thr_yet-

We want to welcome you to BCO. We're sorry for the circumstances that bring you here, but we're glad you've found us, and hope you find the support you need as you begin treatment!

You'll read stories and hear from so many of our members about how they handled their rads, and what you might expect. The first-hand knowledge is so valuable when you're facing something you've never faced! Hopefully you're able to find answers to some of your questions here, and calm some of your fears.

The Mods

sos1125

Thanks, octogirl, really wishing the appointment person could have clarified, I may just call back and ask to speak to someone who could give me a better idea of what "additional imaging" would entail. I didn't get the impression this appointment is my sim. I can't imagine having a mammogram in my current state. When I had the mammo for wire localization two months after a stereotactic biopsy, that hurt like mad despite lidocaine injections. Don't even want to think what mammo less than a month after actual surgery would feel like. Plus I have a hematoma. I did read online (made the mistake of googling) that some radiologists like to get a mammo before RT, maybe I will just insist on MRI if "imaging" has to be done. Guess this is the least of my worries, still, worrying anyway.