Spring 2015 Radiation Sisters

nurse66

Anyone had Proton treatments?

Aeon

Bw49 - I have been pink since my 2nd treatment (I'm headed to #7 soon). It's also swollen (I can see the hair follicles and it's warm), and my skin and especially nipple/areola are kind of a weird pinkish orangish color. You can clearly see the outline of treatment. I have never tanned my chest before, so maybe this is just the color I turn ha. Doc doesn't seem concerned and said to pay special attention to underneath, which I guess is most likely to have problems (maybe because I'm large chested?)

It all clears up mostly by morning, but progresses again throughout the day and night after treatment. So far it is tolerable. I use the radiaplex several times a day to keep my skin from drying out.

I haven't been tired yet beyond the 1st day. Actually, I've been kind of energetic. I'm sure it will all come crashing down. I am making a point of doing some exercise every day because that is supposed to help, even if it's just random lunges and squats throughout the day.

knittingPT

thank you to everyone who shared about your work! It sounds like, for a lot of people, any problems tend to arise late in the treatment plan. I'm definitely going to discuss with my doctors and will have to make a decision soon. I used to be so good at making decisions. Now I feel like my brain just rattles around on my head!

bw49

What is radioplex and where did you get it- they told me Remedy skin- I am pink from th e first one on the bottom of the breast and sore at the nipple- hope that goes away

ElaineTherese

Radiaplex is a cream that you can only obtain via prescription. My RO prescribes it, and it says on the tube that it is for management of "skin irritations, partial and full thickness wounds, 1st and 2nd degree burns, and cuts and abrasions." According to the Radiology Therapists, its main function is skin repair; it does not prevent skin changes. In fact, they don't think it does anything for you until after you've turned pink. I just use it in the morning, after radiation, and at night before I go to bed. I'm pink but not peeling.

bw49

ok thanks!!! I will wait until I am pinker and ask for it- they seem to think the other should work for a while-

MombieZombie

bw49--yep, I looked sunburned from day one. It continued to become a pretty dark red. The line was super visible. I didn't have lots of peeling however.

labbieb

MombieZombie, thanks for the good wishes. Sorry you had such a hard time of it too. I think I'm starting to turn the corner on healing and should be good by next week. Two more to go!!

lisa9101 - it's great that your doc gave you mepilex. From what I've read that stuff works really well. I wish my doc would have given me a script for that.

Florida2015- Re: where to buy Calendula cream, you can check this link:

http://www.boironcalendula.com/wheretobuy/

In my area it's available at Target and CVS Pharmacy (and I understand also at Whole Foods). Or as someone else mentioned, it's available on Amazon.

BC2015

Has anyone missed treatments due to 'machine not working'.  This is the second day, out of 10 that I received a call that the machine is not working.  I asked what this means to my overall treatment as I was told to "cancel any vacations and not missed any days".  I was told it was okay but this was not from a doctor.  I asked if there was a back up plan in case the machine was not working tomorrow and got an evasive answer.  My treatment is being done at a large hospital cancer center  I am not feeling too confident right now.  The entire radiation experience has been less than optimal and yesterday I started crying on the table.  I feel like I am on a factory assembly line.  I am also very tired from the treatments.  More so than I expected.  It hit me with #8. 

 

MombieZombie

BC2015--So sorry you are having such trouble. The whole rads process was a nightmare for me, so I really sympathize. I cried in a corner of my dressing room almost every day. It's just not a nice thing to go through...AT ALL. And I know that assembly line feeling all too well! Keep remembering what Jean says though--she lays on that table and thinks, "This is saving my life." They don't want you to miss days, but I know missing is OK. It didn't happen to me, but I saw others who had to wait due to machine failure or to heal from too much skin damage. There are even gals that miss some days for a small, unavoidable trip. I'm sorry you are so tired so soon. I was super tired from day one, until I started some vitamins prescribed by my naturopath. My energy picked up for a time. I got tired again at the end though. You can get through this! Don't give up! Hugs

BC2015

MombireZombie - thanks! Sometimes I think it should be a requirement for the healthcare staff to have had their own BC experience. Then maybe they would be a little more empathetic. We'll see what tomorrow brings... Right now it's 8:58 and my pillow is calling me!

MombieZombie

BC2015--I agree. I'd love to see how they feel if I make them take their shirt off and allow me to draw on them in a cold room on a cold table every day. May tomorrow be better. Sweet dreams, friend!

florida2015

thank u yes I was told today that I could find it at Fairway or Target. I wS also told that the Cand. Cream has an odor and to smell it first since it doesn't agree with everyone. I was told I could just buy Euricin or aquafor etc.

I just had one treatment today Feel a little itchy but it's not bad

florida2015

yes is isn't that the truth and I have the added pleasure of having to hold my breath and also today having male technicians instead of female. It's a new normal I can't believe I am in. However I see I am lucky compared to some of the other ladies in there with me

Tomorrow I am making sure to go to gym before I go to treatment. I had told them I wanted am appointments and hope that changes next week

MombieZombie

I wouldn't let them give me male techs. That would have sent me completely over the edge with the PTSD. I made them keep my breasts covered whenever possible too.

I had to hold my breath too. Hold breath for each Xray--2 to 4 of them. Then hold breath longer for the 4 treatment angles. Then I got to hold my breath for the 2 boost angles. Even my boosts were odd. Fun times! Fun times! So glad it's over. I know that "I can't believe this is really happening" feeling well. I still get anxiety thinking back, but I've been writing it all down lately and I think it's helping. I got invited to participate in a book project that is being written by a couple of survivor gals who are collecting women's BC stories. That helped me start writing everything down and this helped save me from a downward spiral that I wasn't sure I was going to pull out of.

I am praying for all of you ladies. (I hope you don't mind that. I read in another thread that some are uncomfortable with offers of prayer.) I wish there was more I could do to help make things better for my sisters here. Hugs

cbooklvr

Hey, today was #7, my skin is ok so far just a small irritated area right above my ribs. I am using cornstarch 5x a day as instructed.

My techs are really nice, but I still feel like a slab of meat as they move me around and draw on me. At least it goes pretty quickly.

I also worked during chemo and am working full time now. Going fine so far.

Cherice

florida2015

thanks for writing that. I didn't know I could request just females. I would prefer that but don't know if it would slow process up. They were running behind yesterday. I don't work but volunteer exercise and have other things going on and two daughter coming home in middle of treatment. I had had one treatment and already feel a little itchy

I hate the breathing part as mentioned. It slows things up because if I don't hold my breath they way they want They have to redo it It does do a mind trip Feeling as someone mentioned like a slab of meat. I told them at simulation I feel like a science experiment. Also found out from techs they can go to a 2 year program to become one!

I am not a spiritual person. Don't meditate etc and am wound tight. A friend suggested trying an outside meditation group other than having to do with BC.

Any suggestions that some of you have done that has helped your mindset?

I am pushing them to change my schedule to mornings and hope that works because early afternoon ends up taking long and by the time I am done and speak to a nurse 2 hours have gone by

cbaird99

Florida2015, re the meditation, I use the Headspace app, you can try a ten day session for free, I LOVE the guy that started this, it is easy and very helpful. I have since subscribed to it monthly, I do it most days and have used the sessions for stress, focus etc. and found them super helpful.

zjrosenthal

Florida, yoga breathing doesn't need to be spiritual. Just focus on your breathing slowly in and out while picturing a calm scene like a beach or river or whatever works for you. Also during treatment I repeat in my mind..." this is saving my life" and mentally direct the radiation to seek and destroy any live cancer cells. I don't know if it works on a physical level but it surely calms me. Love, Jean

MombieZombie

Florida--I did have to put up with a few things with my no men policy. There were four ROs in the practice--two women and two men. They rotate who sees you each week but I refused to see the male ROs, so I had to put up with seeing the female docs when they were available. It was rocky at first, but they figured out how to make it work for me. With the techs, I just had to be willing to take the appointment time slot that worked--but I suspect they just adjusted the tech schedule to accomodate things because once they gave me a time that would accomodate my wishes, it remained the same.

I'll mention again, in case it's not too late to matter for some, there is a radiation top you can buy for treatment. It helps you be warm and modest for treatment and has a snap-away window in it for the techs to do what they need to do and then cover you again. Wish I had known about it myself. Would have saved me some of the trauma. Here is the link http://www.thefliptop.com/

I agree about the yoga breathing. I use meditation and breathing for calming all the time. It can be very effective. Without it I probably wouldn't have been able to let the techs touch me. As it was, I had to ask them to not help me undress or help me onto the table. I asked them to minimize the touching. I know I'm an over-the-top case though.

PeggyG6020

rekidal- I am still not sure if I had the Candian protocol. I had 16 treatments, and 5 boosts. I am pretty sure they were higher doses than the 6 week protocol. I did not have any burning, just pink skin, even after the boost. The 5 boosts were targeted. I have very fair skin, but was able to get through with no burning by using calendula, and moisturizer three times a day. I was using moisturizer daily during chemo, and after chemo, right up until radiation, that may have helped to get my skin ready.

Florida2015- you can buy calendula at a health food store, whole foods, or maybe a walgreens. Just be sure it doesn't have a lot of additives. The brand I use is Boiron. I did order calendula spray (Hylands), and I only used it once because it stained my clothes, although it did come out with pre wash spray, I was not willing to take a chance, since the stains were brown. So, I would not recommend the spray.

bw49-I did get a little bit of pink skin when I missed an area in my arm pit with the calendula, but after 2 days of the calendula, it was gone.

I don't want to sound like the calendula is a cure all, I know that some things work for some people, and not others. I think keeping the skin moisturized really helps. My RO gave me vanicream to moisturize, but another RO told me about the calendula. So, good luck, I feel for all of you who are having burning. I hope you find some relief soon.

Iowawoman

Mombie, I'm impressed with how you took charge and dealt with your issues. Way to go!

I just had #8. I have pinkness and a tiny bit of itchiness, but nothing bad so far. I'm using Miaderm lotion that we ordered from Amazon, three times a day.

Looking forward to it being Friday tomorrow. I teach 4th grade and have 27 days of school left. I'm hoping not to need to take time off because writing sub plans is a pain. But I will listen to my body and do what I need to.

MombieZombie

Iowawoman--thanks I think they all thought I was crazy, but I was in survival mode. I'm impressed with you and all of those who have been trying to work during all of this. I hope you get your wish and can finish the school year.

peggy is right--calendula really is great stuff. Some of you may want to consider it.

JJOntario

Today is the half way point for me....I'm really tired partly just from the hour drive there and back. I have tiny pin dot scabs mainly around my aerola and the swelling is making this boob look bigger than the good boob. DD just came home from university...it will be so nice to have her chatter and company today

cbaird99

Well 4 weeks down two to go. Just now starting to feel a bit tired, not normal for me so it seems weird but trying not to fight it too much. Started burning/itching more this week, little dot-like pimple things upper inside corner of breast, may need to get some cortisone cream this weekend. Ready for this next two weeks to be done!

Tapanga

Good morning! Just thought I'd update: 17/28 rads done. Skin really started to show redness last week and it is itchy in a couple of places but other than that, all is well. No fatigue, no blisters, no peeling... although I understand that this could come in the last couple weeks of treatments. I really like the doctor and the technicians that are working with me. I have been exercising regularly and adjusted my diet to include more homemade vegetable juices, more plant-based protein (not tofu) and cut out 98% dairy (I was vegetarian to begin with). My husband has been really supportive, even when I smell like carrot juice, haha.

Have a great day and weekend!

amylsp

30 of 33 treatments done. Only 3 more boosts to go! The skin is red and a little itchy. Inner breast tissue is sore and getting occasional zings, but otherwise not too bad.

I use the Boiron Calendula Ointment. Got it on Amazon. It only has Calendula in a white petrolatum base. The Calendula cream, lotion and gel all have more additives, including alcohol.

Have a great weekend everyone!

ElaineTherese

Lots of ladies finishing up here; lots of ladies making progress!

I had the last of my boosts on Wednesday. The staff gave me a "Certificate of Achievement," signed by the ROs and the Radiation Therapists! That was sweet, but I don't feel like I did anything other than just show up. Happy to be done, but lacking in energy.

nurse66, they don't offer proton treatments at my cancer management center. But, they do in a nearby city. My radiation therapists said that proton therapy is used more often in prostate, brain, and pediatric cancers than in breast cancer.

florida2015

thanks for al the replies. So far I have been using just Euricin with no redness at all I was told to use that. Just dealing with guy looking at me. I also had a woman today. I don't work bit hate my early midday schedule because it cuts into my day and prevents me doing certain things. Do try to exercise before or after

zjrosenthal

Hope all here have a blessed restful weekend. I FINISHED RADS today! Hallelulia! Done with surgery, chemo and now rads. Love, Jean