Starting Radiation April 2017
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Hi Ladies!
I'm back from vacation and checking in for the first time since the 21st. Looks like you all have been busy!
I had my last treatment at 1:15 on the 21st (16 + 4 boosts) and got to ring the bell on my way out. No one was in the waiting room, so it was cool. Got a cute little stuffed teddy bear with a pink ribbon as a parting gift. :-).
Got on a flight to Vegas at 8:45 that night and said goodbye to this ordeal, at least for the time being. I'll start on Arimidex in a week or two and hope not to have any issues (will be on the generic). We stay out in Summerlin while in Vegas which is out by Red Rock Canyon. Its a beautiful area and much less hectic than the Strip. We had some good luck while there, but I like to think of it as a reward for the last 5 months of stress. I hit the biggest jackpot of my life on one machine, and one night we got to stay in $5k a night suite because our room wasn't ready. The suite was un-freaking believable! Complete with a bar, pool table, outdoor patio with a huge spa, self flushing/drying/spray your butt clean toilet, automatic everything you can think of. Blessed 7 x70. :-)
As for my boob, it's held up extremely well. The green tea spray I used for my 4 weeks of treatment, plus the Mometasone cream did its job very well. Other than a little tenderness toward the end (mostly at the sentinel node scar), I've had no issues. No sunburn feeling, no blisters, nothing. I've continued using the cream for an extra week on my own and with my RO's approval just to help the healing.
Best wishes and gentle hugs to you all as we continue on this journey that none of us asked for. It's hard, but a positive attitude goes a long way in dealing with this rotten egg we've been handed. :-)
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19/33 today. More than half way there. I'm fair skinned and but my skin is only slightly pink, more so right out of the shower. My breast is more hot to the touch than the non-radiated one. I have a hard time getting out of bed in the morning and get tired if I'm not moving around. But this is going a little better than expected, at least for now. Hope everyone is hanging in there!
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I've been following this thread and finally decided to join in. I had my first treatment yesterday, a week after mapping/simulation a week earlier. Got 5 tattoos--three in a row down the middle of my chest and one on each side (those two hurt!) Never did want tattoos, but now that I do I can add and cross that off my bucket list! The simulation was tough--since my left breast was affected, I am flat on my back with knees bent, both arms straight back holding onto handles, and my head cocked to the right. Holding that position for 45 minute of images and simulation, with the deep breathing was awful. I couldn't feel my arms any more and I had a terrible pain in my neck. Glad I don't have chronic problems like some of you unfortunately do.....mine were sore for a day, but recovered. The first session was longer, too, but not nearly as bad as the sim. Today was a piece of cake! My breast feels hot and like I have a slight sunburn---worst under the arm, actually, and it's a little pink, especially around the nipple. Has anyone tried pure emu oil? I have Aquafor and Medline Remedy Phytoplex and they seem to be ok at this early stage, but they both have a lot of ingredients, and I prefer to use more natural stuff. I am eligible for the short course--16 treatments and will not need a boost. I like my whole treatment team---they've all been kind, considerate, and good-natured. At this point, I'm actually happy to having this underway. I thought I was in great health until my routine mammogram on Jan 23rd. Since then everything seems to have gone in slow-motion and the constant waiting and wondering has brought out an impatience in me I've never really known before and the shock of actually having cancer.....ugh. I have lots of support, but it's great to have this group of people going through treatment at the same time. Thanks for being here!
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Just finished 17 out of 30. The rash over my clavicle, upper breast area and on my upper back seems worse now. Not intolerable, though. I am using triamcinolone ointment on it (OK'd by RO) to keep the itching at bay. The nurse told me to liberally apply the Miaderm over the weekend, and to do so frequently. I think the fatigue is starting to set in. The 1.5 hour drive home seemed to go on forever. Went for my walk despite feeling more like napping than walking. I hope all of you are doing well!
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hey all!
I finished!!!! 44 rounds- twice a day! Yesterday was my last treatment and it felt good to ring the finished bell at MD Anderson!
My skin is ok so far with the exception of a huge oozing blister in my armpit- has anybody had success with wrapping this area of their body
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hi ladies! Yay for you Norcalteach! 🎉🎉. Your underarm sounds sore, though!! Not sure what to suggest for that.
Like some of you other gals, I have some redness going on...a whole square area around the entire breast and half my armpit and along the upper ribs. Def more noticeable after showering, and def more noticeable at the end of this week as opposed to last week. Boob is tender to the touch, and it's hot......reminds me of when I used to nurse my boys and my milk came in (hot, swollen, sore). It's def swollen too, this is my bigger boob naturally anyways, and now it's kinda like wow! But I only have 3 whole breast treatments left, followed by 3 boosts. I've been using Miaderm right after treatment, once home I use coconut oil and aloe alternately, and I use aquaphor while I'm sleeping. I'm starting to get a bit itchy now too. (I really really can't wait till I can shave my armpit again!!!
Enjoy the weekend ladies!
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Welcome Fallswalker, you will get a lot of love and support from all the gals here. I finished my treatments 4 weeks ago but I drop in to help encourage everyone to hang in there and offer any help that I can. I had a very rough time of it towards the end but I came through with flying colors and so shall you. You got this!
Norcaltech, I had my whole armpit skin peel off. I got some Curad non-stick adhesive pads and placed them up under my arm after applying my cream. I also got some white t-shirts to wear during the most active part of my treatment. I folded a white wash cloth up and stuck it up into my armpit to help hold the Curad pad in place. It was ackward at first but seemed to get easier as time went on. Do not use any kind of tape to hold the pad in place as It will rip your skin off! After a while I was putting the pads all the way across my foob to keep my shirt from rubbing it. The white t-shirt helped to absorb some of the oozing fluid. I hope this helps.
Bdagirl, I lost all of the hair under my treated arm. If what my RO says is true I may never have to shave that armpit again. Keeping fingers crossed! The skin there is as smooth as a babies butt at this point. No redness left at all, it looks totally normal again. Praying no one has to go through that kind of pain during your treatments. OUCH!
You'veGot This!
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The delay from mapping till the actual first radiation treatment is not anyone's choice. I am in Canada and it is just the process everyone goes through which could be up to 2 weeks later I sill don't know why I have to wait that long. Only takes a few days for the Radiologist to work out your mapping scans on the computer to deterain how to give you your radiation.
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Erin, the delay for me was 2 weeks also. We had to wait for my insurance approval before starting. Some people have to wait for someone else to finish their rads before being added to the schedule. At the Radiation Center I went to all the patients wanted afternoon appointments. I wanted mornings so I actually got in as soon as my insurance approved my treatments or I would have had to wait my turn. The clinic I went to only has 3 treatment rooms so that may have made scheduling a little tight for them.
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Hello, to all and gentle hugs.
fallswalker - Had the same experience/issues with the mapping/positioning as you had. Treatments are actually easier. You may have a couple of longer sessions when they do xrays to check positioning or if they are setting up for boosts. You can do this!
On the # of treatments - I had 2 different RO consults and both "prescribed" the same course of 16 plus 4 boosts. Did not ask in depth as to why this many since there were other ladies (like WenchLori) on the blogs who had more treatments, so considered total of 20 was "good".
Wishing all of you healing thoughts!
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erin28 - I have friends from Canada who have shared the long wait for medical care. I know you're anxious to get started. Generally, I was told that radiation can begin 6 to 8 weeks after surgery and as long as you're healed. Hope you get started soon.
NorCal - 44 treatments twice a day! You are an inspiration. Hope you rang that bell loud and proud.
Bdagal - I'm seeing redness now and some warmth. Still manageable. Using aloe, coconut oil, and hydrocortisone. Feeling tired but not debilitating. Forcing myself to exercise.
WenchLori - always good to hear from you and sharing your experiences.
Fallswalker - Welcome! You may want to ask your RO if you can use Shea Moisture coconut oil. It's pure, no additives, and working well for me.
To all - you inspire me to keep on truckin'.
Much love and the most gentlest of hugs.
Two more to go.
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erin28 - I''m in Ottawa, Ontario. I had to wait a month between chemo and radiation treatments to give my body time to heal. My mapping appointment was midway though that break so 2 weeks before my radiation treatment started.
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Physically, I think my body is handling the radiation treatment ok (I've just completed 4 weeks and am supposed to do 2 more; 1 week of regular treatments and 1 week of boost treatments). But mentally, I'm close to quitting radiation with no notice. Just no longer showing up.
I understand that people have jobs to do and no one at my treatment center is mean, but I think some health professionals lose common sense and empathy (not all of them). I haven't been following this thread, so maybe I could have realized it sooner, but it took almost 2 weeks before I realized that it wasn't necessary for my entire breast to be exposed during radiation (I could at least cover the nipple with the gown). They just needed to be able to see the dots/tattoos to line me up under the machine. And of all people, it was a young, male on the staff that I found this out from. Why would no one mention this? Who voluntarily wants to expose their breasts to strangers while laid out on some table in a weird position? Or to have pictures taken of them this way?
Also, I had a CT scan on this past Friday where there were 4 people in the room (including on older man) standing over me while the radiologist poked and prodded my breast (trying to test a theory for changing my breast position for boost treatments). And I guess my face must have shown something b/c the radiologist asked me if I was ok with everything, my response was a lackluster, and unconvincing "I guess." She said they could stop if I wasn't and I asked if she could at least cover me some. She seemed to suddenly realize the situation might be embarrassing and said sure, as she covered my nipple. But why would this not occur to her sooner? I had obviously positioned the gown to cover that specific area. But she just came in the room, as casually as you please, and uncovered the whole thing.
Honestly, I'm just over it. Maybe I'm just in my emotions (I'm in chemical menopause, but I think the regular monthly hormones may be affecting me still). Either way, I'm seriously contemplating saying "f-it" I've had enough radiation and not showing up for the final treatments. I had to remind myself that I'm in charge of my healthcare and don't have to go back if I don't want to.
I know I just dropped into the thread to do a lot of complaining (sorry about that), but thank you to everyone who bothered to read it anyway.
P.S.
Thank you to all of those people who welcomed me back after my last sporadic post. You guys are the best! I don't know what I'd do if I couldn't vent my feelings to people I know would understand.
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Fightingthefight - Too bad about what you've experienced. I have found that the RT's are very compassionate at the hospital that I'm going to as they are very quick to cover my breast after they have lined me up by the tattoos. When I am getting the radiation, I am fully covered!
I don't understand your feelings about just forgetting about the rest of the treatments. My RO didn't even bother to see me yesterday at our weekly visit, just sent her resident to talk to me. I seem to be on an emotional roller coaster right now. It sure doesn't take much to make me cry..... I have only done 9 of 29 so will try to stick out! I really shouldn't complain as the only SE that I have experienced so far is extreme fatigue.
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hey there fightingthefight......sorry to hear the space you're in right now. It's a rollercoaster ride for sure. During my treatments, there is one young guy tech who is consistently at my appointments...the ladies seem to change more often. He's the nicest of all of them....always asks how I'm feeling that day, and then will ask about my daily plans etc during the positioning. My breast is fully uncovered during my treatment....they always pull the gown over so that my mid-tattoo is showing and they leave it pulled over. I'm not bothered by it at all.....but I recognize thatnot everyone will be comfortable. Hang in there!
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Thank you for your responses. I know it seems like such a silly thing for me to say I'm considering quitting (and over something as seemingly trivial as a little embarrassment). But I had a lot of emotional things happen to me in the months before being diagnosed (including losing my mother, who was my best friend, and getting into an accident and totaling my car). I'm a strong person and mostly positive and optimistic. I've especially tried to be positive to avoid scaring my family. But the flip side of that is that I think it's harder for me to let negative emotions out a little at a time. So I don't think I realized how close I was to the edge emotionally, and now I'm struggling not to go over (and make a decision I'll regret).
I just want things to be done. I feel like I'm out of control and just want to regain control over something in my life.
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Fightingthefight - I feel exactly the same way, trying to stay positive for my family but feeling emotional inside. I also have said exactly your last 2 sentences above to my DH many times these past months. What keeps me going and not wanting to quit is that i want to know that I've done all I can to beat this!! No regrets or what ifs after I'm done treatments.
hang in there and know you are good company!
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Fightingthefight - I won't try to pretend I know how you're feeling. But, I do know that each of us have endured loss and heartache. I can say that for many of us there's been times that we didn't think we had the strength to carry on. Miraculously, we do. This is a safe place for you to express and share your fears. Please know that even in our darkest hour this too shall pass. Please reconsider and continue with your treatments. A life changing book for me is The Power of Now by Eckart Tolle. It provides great comfort for me . I hope you consider reading it. I'm sending positive energy your way with love. You've written that you are a strong and positive person. You can do this!
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I truly appreciate the kind words and positive thoughts towards me (esp. since we're all technically strangers). As I was writing here, I also texted some people to pray for me (wasn't up to talking), and I prayed also. I'm not exactly smiling, but I do feel comforted. I had to remind myself it's ok to have faith but also sometimes to be weak and feel sad.
I didn't want to bring the mood of the thread down (and am happy it seems like I haven't), but feel better for getting my honest emotions out. I prayed about it and I'm not going to quit (unless I physically think it's not worth it to keep going), but am going to try to make my needs clearer to the RO and other people treating me. And if I'm seen as the "troublesome" or "finicky" patient, oh well. I can live with that. But I need to be able to get through this with as much of my dignity in tact as possible. Even if I have to remind some people that they're not treating a mannequin, but a person with feelings and emotions.
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Yes! A very wise man gave me this great advice. Women need to advocate for themselves by pretending we are advocating for a good friend or for our daughters and sons. His point being that often we are raised to be good little girls and don't stand up for ourselves. If we "pretend" to advocate for others we can find our own voices. I hope this makes sense.
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FightingTheFight - Adding my voice to that of others and sending encouraging and healing thoughts your way. Were I your age going through this BC journey, modesty during treatment would have been an issue for me, also. Please share your moods, emotions here freely - that's what we are here for - to listen, encourage, and help one another. Making your needs clear to the RO and treatment staff sounds like a great idea - believe we all need to empower ourselves to be our own advocates. You go, girl!
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Wow, Butterfly1234. I really like that concept and have never thought about things that way. I have no problem speaking up for others I care about, and it makes sense that I should be able to do at least as much for me. And you're 100% right that wanting to be a "good girl" or easygoing patient can allow us to feel run over. And when I don't advocate for myself I feel more mad at me, than the other person.
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You're fighting the fight. As we all are. That says it all. Hugs to all!
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Fightingthefight, you can come here and rant and complain all you need to! We're here for you! I totally agree with all the gals here. Don't give up and please make your comfort level known to everyone involved in your treatment. I had a young man help with me a few times, he was very courteous and was the first to cover me up. My situation is different from others here as I had a DBMX so no breast tissue or nipple to show. I did feel like a freak at first, I mean scars running from under my arms to the center of my chest was frankenstenish to me. He said my scars were beautiful. You can do this! Hang in there we've all got your back! Easier said than done I know. Your RO team better straighten up! They don't want me to come there and straighten them out! I will add you to my prayer list as well.
Blessings to All
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I'm so happy to be able to read about the women here who are going through similar treatments as mine both positive and negative. I have been very happy with my RO team. However, this week (week 2) a guy has been there helping getting me situated on the table. For some reason it has made me uncomfortable. I'm a little surprised by this because I use to have a male OB/GYN. At all my appointments both of my breasts are exposed and only my left breast is being radiated. I'm wondering if this is unnecessary ?
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For some of you, modesty seems to become less important as we go down this road, but for me, it seems the older I get, the more uncomfortable I seem to get with the lack of covering for various procedures. On Friday I had to have a CT for positioning prior to the boosts. I entered the CT room and saw two male techs in an adjacent room with a window overlooking the scanner. For some reason, this really bothered me, knowing they could watch me in a very awkward position as I lay on my left side, waiting for the RO to come in and check positioning. I just felt so vulnerable and embarrassed. And once, during one of my early radiation treatments, I was not given a gown to wear to cover myself, another time when I just felt awful and out of control. (It turned out the gowns were in a drawer nearby and the techs assumed I knew where they were). It would certainly be easier if I didn't have this attitude. But I have always been a modest person. I really wish health care workers would be more aware of the need for some women/men to be given more dignity in all of this. Some of them are very good about it, others less so.
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hi giginb- do you wear a gown into the treatment room? I know every place is different, and some gals actually sound like they wear their own clothes in and have made tops for themselves that open in the back, etc. When I go, I go into a dressing room....I put on 2 gowns (removing only my top and bra).....first, one with the opening to the back, and then one on top with the opening to the front (so ladies aren't sitting in the waiting room with a gaping back). When I go into the treatment room, I remove the outer robe. I lay on the table with the other robe on, and then just pull my right arm out as I'm laying on the table. And they just pull it over enough so they can see the mid tattoo. They lift up the left side for the positioning check with that tattoo but that's it. Maybe when you go in next you should say: I'd like to be a bit more covered up, is that ok?
Wenchlori - so guess what I noticed yesterday!! My underarm hair in the treatment area has disappeared!! Poof! Just like that!! One day it was there and the next...gone. I ain't complaining!
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Bdagal - That's exactly what I do with the double gowns.
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hi ladies - does radiation affect your iron levels? So this morning I went to the loo, had my morning pee....and was like holy cow, what's going on with that color?! Looked quite pink/red....and I know my nans has looked like this when she's had a UTI. But I'm pretty sure I dont have a uti. So I googled 'blood in urine'.....follow a trail of posts to one post about 'beeturia' - when your body is lacking iron and you eat beets this can happen. And funnily enough, I just had a salad with beets last night! So does rads affect your iron levels and if so...how/why? Are any of you taking multivitamins
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I always pee pink after beets. And my daughter even puts a little note in the bathroom so she doesn't freak out!
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