Radiation January 2019
Comments
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Hello all - Happy January 10th. Two more days of radiation for me. Phew!
Dani444-thank you for your support!
Egregious - I've not tried miaderm - my doctor recommended regenecare with lidocaine and it's not worked as well as I'd hoped.
With only two left, I'm not sure if I should try to find miaderm or not although they say that the skin can get worse after treatment stops. I'm really hoping that does not happen to me! Do you get miaderm via rx or just over the counter?Suzyshackle - I've heard Vega One is a really good brand of protein shake!
Salamandra - uh oh on the lanolin! I have told my doctor and he said great, use it! I hope it's not the cause of any issues for me. Maybe I'll stop using or research some more. Definitely no fragrance, they told me that too. Sorry you are so tired. For me, I was tired at first but I think I've gotten used to it as I have more energy now than in the beginning. I love what you said about if you can't be a slacker with breast cancer, when can you be!? I also debated on taking time off. My job is stressful and I just didn't think I could handle both at the same time so I have taken 4 weeks off. I go back next Thursday. I felt guilty for it, still sort of do, but I am really glad I did. I only took one week off after my lumpectomy and that wasn't long enough. Trying to learn to be better to myself.
CHB87-I have not experienced chills - I hope it gets better for you. I have found I have more energy now than when I first began treatments so hopefully you might find the same!
Prissy - I'm new here too. This is my 2nd post but I wish I'd found it earlier. Best wishes for you - i'm glad your path report came back good, mine did too and it helped my worry tremendously! Good luck with your appt. It was surreal for me but now it's just old hat!
Kerlyn - it's amazing you are more patient now - good job!
Joytxs - for itching I've been using Aveeno 1% hydrocortisone. It's helped although it just keeps coming back!
Faceforward - love your story, thank you so much for sharing.
HPFull - I took 4 weeks off during radiation - I go back next week. I worked the first week of radiation and have 5 days without it before I go back. It is amazing that many of us feel guilty for taking time off. I knew I could push through and work but I also knew that my health was my most important priority to me and I would not be able to focus on it as much while working. I am so glad I took time off although I do still feel a bit guilty. It's crazy. Love what Salamandra said - if we can't put ourselves first after being diagnosed with breast cancer, when can we!?
Heather - I think you will be able to work out but you may have to scale back what you do...just do what feels good to you!
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Morning! I’m starting in January also. Have my CT appt on January 14. I’m going for 6 weeks, so 30 treatments. I’m coming back to life after 5 months of chemo (finished 2 weeks ago) so I’m not looking forward to being tired all over again. I’ve been practicing holding my breath since I’m left sided. Anyone try CBD oil or lotion on their skin and if so how how did it work?
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Have any of you ladies with lumpectomy had to have liquid drained after surgery? My surgery was 12/27 and I was aspirated Tues and go tomorrow to have it done with ultrasound? Just curious if anyone else had liquid build up
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FaceForward- What a sweet story, it brought tears to my eyes. I had a similar story with a complete stranger, of all things it was someone from my insurance company! She ended up asking if she could pray for me at the end of the call. I cried like a baby. She even volunteered to make phone calls and advocate for me with the situation I was dealing with.
Prissy- hope your planning appointment went well!
HPFULL- My RO offered to write me off work but I am single and needed to go back. I had just been off 6 weeks after my UMX. Going back was definitely rough. I work 12 hour shifts and the fatigue is kicking my butt. If you feel better taking off do it, and don't feel guilty about taking time to heal. I had a good shift the other week but it was short lived sadly, I am dead on my feet by the end of my shift. My skin is pretty irritated, especially under my arm so it makes working pretty uncomfortable. Everyone is different so please do not compare yourself to others. Do what is best for YOU. I did file for intermittent FMLA for just in case.
10 more to go for me!!
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I survived today's simulation! For some reason, I woke up this morning feeling very apprehensive about it but it went very well. The tattoos were more of a poke than I thought they would be though. Makes me wonder how people can stand to get large areas of their bodies done. Ouch! My 1st real treatment is next Wednesday. I'll have 16 regular sessions and the last 4 will be boosts. 20 Trips to the hospital means I'm going to be on a short leash for the next month. Maybe I'll print out some kind of calendar for the fridge so I can have a visual of my progress and stay positive. As I was leaving there today, I heard lots of cheering in the hallway. When I rounded the corner there was a woman there surrounded by several of the techs and I got to see her ring the bell. That was a great visual and gives me something to look forward to. Right before I left today, my tech handed me a big yellow card to place on the dash of my car. It allows me to park in the close-up, reserved area for cancer patients. This probably sounds strange but until that very moment, I had never thought of myself that way. Somehow, my brain was perfectly fine rationalizing that I use to have a cancerous tumor that was removed. I never thought of myself as "a cancer patient". Weird. 😉
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Thanks for the kind words and insight Salamandra, Carebearzzz, and Dani 444. I a have been off works so far for a month for LICAP Flap on the right side. I still have lots of nerve pain that I hope subsides. I do need to get over the guilt. I am so stuck on I should just be able to power through. I think this diagnosis will help me to start learning to take care of myself.
Facefoward I remember feeling the similar. I think I planned so much for my leave at work and was just trying to get everything "handled" prior to surgery. It wasn't until I was stepping onto the elevator leaving the Oncologists office for the first time that I thought "Oh my God I have Cancer!" I had a good cry. I also loved your Walgreens story it made me cry.
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Hello all, today I hit the half way mark and so far my SE have been manageable. I really didn't have a choice but to work through radiation. I scheduled my appointments for the afternoon so I could go from work to treatment and then straight home. The first couple of days after treatment I came home and got straight into my PJ, but after putting on 8 pounds since surgery this week I have been coming home and going for a short walk - I feel like I need to start geting back into a fitness routine, not only because of the amount of weight I have put on but also because it helps me to clear my head and relax.
We are all different and I would encourage you all to do what feels right for you, be that working or taking time off. Don't feel guilty or allow anyone to make you feel guilty about working or taking time off - do what is best for you.
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Congrats on your half way mark TC73! I bet you are relieved to be half way done
I put on close to 10 lbs after surgery ugh. I walked the dog today and kept going all the way to the beach. Looking at the ocean always clears my head and fills my heart. Also went to go see Bohemian Rhapsody so good! Hope you all have great night
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FaceForward and Hpfull, I had the same experience. I think I hardly felt anything before surgery- it was all just logistics and planning and things to do. It wasn't until I stepped into the MO office the first time a week after surgery that I got hit by "OMG. I'm a cancer patient." That was the first day I actually cried about any of this. Going in for radiation setup last week was the same sort of experience. I'd put the cancer thoughts away for the holidays and got totally overwhelmed by all the feelings again after I left. Actual treatment starts on Monday. Still have a lot of tenderness around my lumpectomy incision, so hoping radiation doesn't make it too much worse.
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Hello all! I went today for my CT scan and tattoos. Will go for my simulation next week. I have to say that today was very emotional for me. Even though I have had a double mastecomy and going through a recontruction, I guess I haven't really seen the mastectomy as a cancer treatment but more as a surgery but today it hit me hard that this really is a cancer treatment...I have/had (what is the correct tense?) cancer. I also returned back to work this week (I am a teacher and I've been off since before Thanksgiving), so I think the emotions plus the exhaustion just hit me hard today...so here's to so laser beams and cancer free ladies!
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Jen2Mom, one of the best things about this site is that no matter what I post, there's always others here who have had the same experiences and understand completely. Like everyone else here, from the moment I received my diagnosis, everything became a whirlwind of appointments, tests, surgery, treatments, new experiences, etc. You don't really getmuch absorption time to contemplate how it affects your life. I think I'll always have trouble thinking of myself as a "cancer patient". They found a cancerous tumor in me that was removed so technically, I guess I HAD cancer. In the grand scheme of my life though, this part of it has been just a small blip of time. Now, I'm doing rads to prevent a recurrence. In my mind, I'm still not a cancer patient. Maybe it's my subconscious trying to ease me into reality or my psyche trying to re-write the story. For me, I know part of it is that when I see others in the oncology waiting room I don't feel (for lack of a better word here) "worthy" to say I'm a cancer patient. Some of those people are true heroes. Even on these forums, I see bravery here every day. You are warriors, all!
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Week two is officially a wrap-roooski
I had a sneaking suspicion that yesterdays fatigue had to do with my breakfast choice. I was kinda rushed and out of almond milk so I had a gluten free bagel (I have a gluten sensitivity) with cream cheese.
Sure enough, this AM I had my standard hard boiled egg, cereal with fruit and almond milk. Super energized today. This whole radiation thing may get my in the best shape of my life, between the eating right and working out constantly to keep my energy up.
FaceForward and Jen2Mom- Don't worry, I am covered in tattoos and still found the simulation tattoos a lot more painful than any other tattoo I have ever gotten...maybe because I didn't want these ones? Also in reference to the whole cancer patient thing, I FEEL YOU 100% Up until radiation, I thought of it that way. I had cancer, they took it out....going to radiation every day is a not so friendly reminder that I am a "cancer patient" (not that it is a bad thing...just a tough label to assign to yourself ). I go first thing in the morning so it's not always the best way to start the morning. I started getting really really into glam makeup. Watching youtube tutorials on how to do makeup, lots of trips to Sephora and the Morphe website. It makes me feel normal in the morning. Instead of getting up and thinking "ok, off to my cancer treatment" I think "Oh what look can I create today, what pallet can I use today, What product can I try". I even signed up for those Ipsy glam bags (you get a new sample size of makeup every month) so I have something to look forward to even after my treatment is finished. Find something to remind you that you are still you. No matter what that little yellow paper says
(Bonus: every time I go into radiation, the nurses/techs are always so impressed with my makeup so it even switches the conversation from cancer to makeup right before I lay on the table. I never thought I would be walking into treatment so upbeat and with a smile on my face)
Someone had mentioned IBprofin increased their swelling. that is so strange. I have been using Aleve to control it (2 in the morning right before treatment, one at night before bed). I also incorporated some gentle massage and the swelling has reduced a great deal. Have a wonderful radiation-free weekend everyone!
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hi all,
This is my first post ever. It touched me when you mentioned "marking the days off the calendar" because that's exactly what I do! I just finished my fourth week of radiation and yes, it's becoming a very draining process! I often remind myself that it's not as hard as chemo was and try to remind myself how far I've come! Does anyone experience people in your life kind-of "forgetting" that you're still in treatment even though chemo is over. I find it frustrating sometimes because even though I'm looking healthier on the outside, I'm still tired and definitely not myself.
So thankful for all the women who are walking this path and "understand". We are strong, amazing and resilient!
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Hello to group
I will start 3 weeks of radiation on Monday. I’m still exhausted from Chemotherapy. I’m hoping radiation will not be as tiring. I will be glad when I can feel better not so weak and tire.
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Welcome afp and asknomore!
Hope you find a lot of support and encouragement here.
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I had my first appointment with RO today. I need 6 week RADS to whole breast and Axillary nodes. The nodes surprised me because my BS said it want enough to count. I kind felt like I was going to cry for a se when the nurse was telling me about all
The resources and that they have a counselor that is good to utilize as sometimes it can be hard pretending we are okay all the time with friends and family, I guess I didn’t realize/think about that until she brought it up. I Putting in to take the time off work during rads but if I end up feeling OK during it I’ll go back. The RO said I probably wouldn’t feel anything for the first three weeks but progressively get more tired and red
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KerLyn that was the SWEETEST story about your daughter and husband💕 I got all choked up reading it
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Hello everyone. I just found this site last night. Sure wish I would have found it earlier but maybe it was good I didn't. I tried to stay away from all types of groups because I am a worrier and I didn't want to add to the what ifs, etc. while waiting for endless test results. I started radiation treatment yesterday. I will have 20 treatments. No idea about dosage or anything, they don't say and I don't know what to ask. I just know that I fell into a category for qualified me for hypofractionated radiation. Doc said I could do internal radiation for 5 days twice a day, that was a no for me. I am a little behind in research, I just saw the rad doc for the first time last Wednesday, had planning Thursday and started yesterday. I was super busy last weekend and then I have had a really bad flare up this week of my Rhuematoid Arthritis, haven't been able to use my hands. Trying to figure out if I should be on a special diet (other than make sure I eat protein daily), etc. Right now exercise is out of the question. I have been off my RA meds for three months and the only thing I am on for it right now is the dreaded prednisone so I am flaring up for days at a time. Right now it is my hands, wrists and hip. Keeping my arms above my head for treatment is not helping with the shoulder flare ups either. I can only guess that will continue the entire time. How much water should I be drinking daily?
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Welcome labmom so sorry your are having RA flares ups on top of all this. I hope it subsides soon. I think 8 glasses a day is standard but I keep reading anoutbstayimg very hydrated so I would think more than 8 if possible
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Welcome labmom, to the club nobody wants to be in! Hope you find comfort and support here among us.
Regarding water, I was dehydrated for a couple of days during rads when I was so tired I forgot to get my usual cups of drinking water. It was enough to make my mouth and lips dry. Usually I'm all about the 8 glasses a day. There is such a thing as drinking too much fluid, so happy medium in there somewhere.
Am three weeks post rads and turning from fire engine red/dark brown to lighter brown. Still itchy and going through tubes of miaderm and cortisone and still spraying with refrigerated liquid aloe. It's exasperating to have side effects linger this long, but honestly things are inching better each day. In particular my nipple has stopped hurting like the blue blazes. The crease under my armpit isn't killing me anymore, and the big red spot on my upper breast is fading and peeling like a sunburn.
This too shall pass. Greetings to all, old and new! We can get through this together!
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Thank you, Salamandra!! Very helpful!
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egregious I like the spray aloe idea. My nipple is already ultra sensitive from surgery. Was your sensitive prior to radiation?
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Hey HPFULL,
The refrigerated aloe spray is great for moments of desperate itching. I don't even have to undress (am at home obv), lift my shirt, lift the top of the bra, and spray on relief.
No I hadn't been super sensitive before all this started. My surgery was right at the bottom of my nipple. They gave me a month and a half between surgery and rads so I had some time to heal.
Maybe it would be helpful to get a little treatment holiday before starting my AI. Also as an older person I need to get my second shingrix shot. Don't want to have cancer *and* shingles. There's a shortage but the doctor's office put both of us on the call list for when the next batch comes in. Husband also has cancer, CLL. We're very competitive like that.
Hello to all and sending out warm thoughts, virtual cocoa, and good wishes for healing and happiness!
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egregious, I had to giggle “lift up my shirt (at home obv)” I’m so used to walking in and taking off everything from the waist up in every doctors office, I’m afraid I may put on a show unintentionally at the dentist! I walk around my house looking like Tarzan....lift the one side of the shirt and bra, apply the Miaderm and let it soak in while I fold laundry, start dinner prep...i just remind myself there are windows
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Thanks for the laugh Kerlyn and ergregious :)I was a bit down today and Tarzan in the kitchen and (at home obv) made me giggle. I already can't wait to get home and take my shirt off. I wonder how RADS will be?. The cancer got in my nipple so I had thought they had taken it all. They last time I saw PS and BS I still had bandages on and I think they thought they took it all too, but I still have the have about 1/2 of the actual nipple there (no areola) but the nipple in now flush with the breast tissue and I can't stand for anything to touch as I have so much nerve pain. I have to put silicone tape over it. Hopefully it won't be too bad. I am grateful for this thread so I can get tips for your ladies
Happy Sunday! Hope you have a great week
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Wanted to say hi and cyber-introduce myself. I may be starting radiation this month (still need to make my final decision. I’d love to hear stories of dealing with side effects and also any homeopathy anyone has added in. I, like all of you, are feeling a bit overwhelming and fearful. We’re in this together. ❤️
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Has anyone else already started or about to finish the 3 week/16 day treatment? If so, how is it going? My RO said this would be the plan for me. Shortening it to 3 weeks sounds great, but the extra dosage per day doesn't sound so great to me. It seems the RO and nurse did their best to try and minimize the potential side effects. I am supposed to go for CT simulation this week...still trying to convince myself this is all really necessary with my tumor stats.
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Hello to you! I’m also curious about the CBD lotion. I’ve been using the oil orally. Can’thurt, right?
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Hello everyone. I wish you all the very best in your treatments.
I am wondering about the utilization of the ASCO 2018 guidelines as well.
Due to my age (38), I was first offered to go through 25+8 boosts (50 grey + boosts) conventional scheme of radiation (in line with ASCO 2011 guidelines). When I asked about the recent guidelines, radiation oncologists have discussed the issue on the board and agreed to give me the 16+4 boosts (42,5 grey + boosts). Is there anyone around my age and profile that went along with the shorter hypo fractioned radiation therapy? I would really appreciate your input as the treatment is supposed to start tomorrow in the afternoon . Yet I still do not have a peace of mind whether I am doing the right course or not since there are not many studies on the late side effects of this scheme on young breast cancer patients under 40.
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Dolcevita I'm supposed to do 15 treatments but had my boost during surgery with Intraoperative Radiation to the tumor bed. I'm waiting on a call for my setup, not sure on the gray number yet.
Parrhesia I've read that 42.5 is the new standard. I'm not sure what I will be getting but as I mentioned I'm only doing 15 rounds, at least that is what was discussed. Good luck.
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