Spring 2015 Radiation Sisters
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Day 1 done! I have more sharpie on me now, but they said I can wash the outline off.
They gave me Radiaplex gel. I plan to use it religiously. My mom said the 2nd time she had rads, she used the stuff they gave her and had no issues. Fingers crossed!
I know I shouldn't really expect any SEs after day one, so I wonder why I'm so tired today. I yawned continuously on the way home. I took a walk later and was wiped after I got home. Maybe it's the release of stress (finally starting this, instead of anticipating).
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Congrats to all those who are finishing up!
Aeon, my doctor gave me Radiaplex, too. I use it when I wake up, after rads, and before I go to sleep. I'm on my boosts now, and I'm pink but not peeling. Only six more boosts to go!
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I had my first treatment today, and it went well. The DH was having a harder time today than I was. I get treatment prone, and it's a little weird as they are getting me into position. They talk to me, of course, but there are a lot of little light touches and pushes. I know who's touching me, but I don't know exactly who is touching me where, since my head is in the head rest. I wonder if I'll get better at recognizing them by voice. (That head rest is disconcertingly similar to a massage head rest. Where is my masseuse?)
My treatment center also said I didn't need to put lotion on until I saw a need, but it seems smart to try to treat it from the start. I have Miaderm and 100% aloe.
Lisa
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Elaine - Glad to hear the gel is working for you! I'll keep at it and hope for similar. Good luck in your last week-ish!
Iowa - I'm prone, too. They did a mold around my arms and head during sim. My head is turned sideways, which is kind of uncomfortable on my neck. Do you have a donut like massage tables? That was what I thought (hoped) it would be.
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Hi everyone. I thought I had all my emotions in check, when out of the blue I started crying while getting my treatment this morning. It only lasted a minute or two and I was able to pull myself together before treatment was over. Thankfully, my treatments are done in the prone position so the techs didn't notice. As I sit here now, tears are falling. I didn't realize how sore and tired I am. The BS and the RO have both told me with the amount of tissue removed it is going to take time to recover. At my meeting yesterday, with my RO, he told again that my body went through a lot of surgery in less than a month's time and that I need to rest and give myself time to heal. Easier said than done with working two jobs, and my daughters activities. I guess I am just frustrated because the pain had subsided some prior to radiation and now it is a different pain. I have this strange burning/stingy feeling all the time, and my breast is overly sensitive. Wearing a bra is uncomfortable, but my breast are large and not wearing one is just as uncomfortable. I have tried different sports bras, cami's etc. trying to find the right one. I started using cornstarch yesterday in the fold which seems to help and I am also alternating between aquaphor and aloe. I am very pink already, and I have a rash over my upper chest, not the breast. RO said that can happen and not to worry about it. So I won't. I am hoping that since I am having the accelerated treatment that I will start feeling better soon. Everyone says how great I am doing and that I have such a positive attitude. If they only knew. I only have 11 treatments left and I just want to be done. Once I am done, my MO wants me to start on Tamoxifen right away. I don't know if I can even think about taking it anytime soon. Thanks for letting me express myself here, it helps.
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Going tomorrow for my Sim. A little nervous but ready to get on with it. Still don't have total mobility with my left arm and hoping I won't be in too much pain with having to have it up for so long. Did anybody take anything before your sims? Valium? Pain meds?
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I was scheduled for 25 treatments then 5 boosts. After today, only 2 more full breast, supra and sub clavicular and axilla treatments. Next week is 5 boosts to the tumor site then DONE! I am pink and very tender with some stinging and occasional flashes of sharp pain for a few seconds. Altogether there it cold be a lot worse. I've used Aquaphor from the beginning and got a scrip for a steroid last week. I also use cornstarch under the fold. I was told nothing on the area for 6 hrs before treatment as it can interfere with the radiation. This does go pretty quickly once you start. Love, Jean
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Brown, I took an Ativan before my first treatment.
Jean, you're getting close!
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NurseShark - I am at my 1/2 way point right now - have completed 15/30 treatments. The first 3 treatments were very stressful, lots of anxiety, didn't like the machines close to me, stressed about not really knowing what was happening next, etc. I practice and teach yoga but still had that fear factor streaming in. I found that simply focusing on my breaths helped a lot. Repeated to myself "breathing in, breathing out". I noticed that my breath slowed down when I did that and I felt more relaxed. After that, I paid more attention to exactly what was happening and when. For me the fear of the unknown is a big trigger. So knowing that they do the exact same thing every time helps me to feel more comfortable. I count my breaths when the the rads are beaming and I'm done in no time. I hope this helps some, it could be that after a few treatments you will be used to the routine. You can also ask them to play a cd for you if that's available. Hope today is a better day for you. ((HUGS)) -
For all of you just starting out, getting into a routine definitely does help with the anxiety.
I completed #23 of 33 today. Only 5 more full breast/ 5 Boosts left to go! Like Jean, I'm starting to get pretty pink/red and the inner breast tissue is sore and giving me occasional zingers, but it's not anything too bad or overwhelming. I've started upping my Aloe/ Calendula/ Aquaphor treatment though to keep the skin as healthy as possible. I also had to start treating some redness on my upper back where the radiation for the nodes in my clavicular region exits through the back. I wasn't expecting the back to be involved, but I guess it all depends on the trajectory of the radiation beam. And I have four different fields that they are treating. -
Had my first round today. 1 down 32 to go. Thank you all for sharing your stories!
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I think you are feeling things with a greater depth, one of the blessings of facing an illness such as cancer. Embrace feelings, it is not a bad thing to cry - it is a gret release. We are taught to not show emotion, but that is what makes us so humane. the way I cope with my extremes is looking for what I am suppose to be learning. you will triumph in this challenge also, and cry with joy. Keep going! -
I completed 17 of 30 treatments today...I still get anxious beforehand. I've been taking a very small dose of xanax before treatment (.25mg).I find it takes the edge off for me and if that's what I need to get through this, so be it. I feel like I should be emotionally stronger but I'm not!
So tomorrow I have a second sim for the boosts. Has anyone had a second sim and what can I expect?
Also, I use Lindi cream. Anyone else? Seems to work well. No real skin issues yet.
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Hello everyone,
I finished this week 20 rounds of radiation it left my breast a little sore with a rash. Overall, it wasn't too bad for me. Worst part was two days after I finished, I caught a bad cold from Typhoid Mary,My coworker . I haven't been this ill in years 😞Please be careful being around someone with a cold, we get hit harder because our immune systems may be compromised during and after this treatment. Good luck to all and God bless.
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My dr wants me in right away so I'm having my sim tomorrow. Thank you all so much for sharing - it helps alot!
Florida2015 - how did your sim go?
RosyWorld - congratulation on your grandson! Holding that precious bundle will help immensely! I'm very luck to have my grandson living with me (along with my daughter and son-in-law). Throughout this challenging time, his smile and laugh keep me in positive spirits.
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Been running to the bathroom a lot since last night. I'm very weak. I took some immodium and managed to get to rads with hubby riding shotgun. Just resting, hoping I can make it to the last 2 full rads treatments then next week is just boosts. I had half a babanna,, some rice and going to have a bit of applesauce later. Scared to have anything else. Hope the rest of you are having a better day. Love, Jean
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So glad to have found this thread. Been carefully reading all the posts and trying to get prepared. My RO said I was one of her most knowledgeable patients (thanks to all of you ladies). I went for my initial scan to map my anatomy this morning and will start my 30 treatments on 4/29. I will be getting 4 areas radiated (left side, clavicle, axillary and posterior)- hoping I come though with minimal SE. Have already ordered Calendula cream and they gave me samples of aquaphor. Again - all of your tips and suggestions will definitely make this phase of the journey better. My main concern seems to center around what I will wear to work if I find I must ditch my bra. I know it is such a minor concern, but something I keep thinking about. Crazy I know..... Hoping everyone gets through with minimal problems. Sending out hugs, Candy
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Hi Candy,
I wore a cotton Fruit of the Loom, sports bra that I purchased at Walmart. It is very comfy and looks decent under dress clothes. I wore a beige and a black one. Best of luck to you.
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Katluck13 - thanks I will definitely check it out. Someone also suggested the genie bra - again at Walmart. Trying to be as prepared as possible.!
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Jean--sorry to hear about the intestinal issues and so glad you don't have much longer to go. Keeping you in my thoughts.
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It got easier for me, emotionally, as time went by. The first few were much harder. In the beginning, I had a hard time even looking at the machinery. By the end, I was able to express gratitude that the technology existed to try and help me. I cried several times, both toward the beginning and toward the end. Cancer is big stuff, and it's normal to have big emotions around it.
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Woot, woot! My Sim is tomorrow, bright and early! I'm still incredibly sore from my lump, but am ready for the next step. Rads start on Monday.
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Aww Jean, sorry about your gut issues. I saw a nutritionist at my cancer center for issues with weight loss and D. She suggested a good probiotic yogurt 2x/day for 5 days. It did seem to make a difference. I still tend to see-saw between C & D, but the severe stuff seems to be improving. I am glad you are almost done!
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curlykat, I start on Monday too! How long are you going for? I have 6.5 weeks. My Sim went better than expected. I was really freaked out but doing better now. I was reading another thread about how bad some skin issues have been and now I'm terrified! I thought I was getting the lesser of the two evils by dodging chemo! But some of those stories are scary!
Talking about big emotions I have to share what a friend sent me! It really has impacted me! She wrote "...you are likely finding you are stronger than you ever knew and maybe even weaker than you imagined you can bear. Honor every emotion. You are being crafted into a new amazing you!" I think this is so true. We all change after this dx. We are never the same! Hugs to you all!
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Browncjht - Not sure now that I'll start on Monday like he originally planned. The tech said that they've had some emergencies drop into their schedule, but hopefully I'll get a call before the end of the day Friday to get that scheduled. I am really trying not to worry about the future. All that does is puts us in a less strong place. I figure, IF I have skin problems, I'll work with my doctor. Still, it will be better than chemo - which I've seen my mom go thru twice.
Your friend is very wise. We do need to honor all of our emotions. And this is certainly a transformational journey. I think it's just important to try not to allow ourselves to get weighed down in the negative emotions and fears. I realize that depends on one's diagnosis, but I'm a strong and positive person, so I know I'll get thru this, even if it's hard. So far, my success rate at getting thru hard things is 100%!
My simulation went well. For those who haven't been thru that yet, here's my experience:
The table for the CT machine was elevated at the head, so I had to lay back on this blue bag of pellets that would become a mold for my future treatments. The tech got me situated, arms crossed over my head, head turned slightly to the side, and then sucked some of the air out to help it form to me. That will help ensure that I'm in the right position for treatments. My arms did start to fall asleep from the shoulder impingement, but I won't ever be in that position as long again. The room was cool, but not cold.
They did a few CT scans, came out and put long strips of stickers on me (I couldn't see them well, but they seemed to have evenly spaced markings on them. They scanned again, and then came out and put ink marks on me lined up with the field of treatment. Covered those up with tape so that I don't have to worry about them rubbing off too much. I'm not sure how the tape will work if my skin starts getting fragile.
I'll get a call from Scheduling to find out when I start. The first appointment will be long as they'll do the radiation and then I'll meet with the nurse for education. After that, I'll have a regular time and most of the time it will be a quick in and out. The RO will pop in to check on me about once a week, unless I have questions or there are problems. He said that because of the narrow margin, we'd do between 34-37 treatments. I think he had said 37 before, so that wasn't new info.
I also got to look at my CT scan. I told him that the surgeon said he took out 1/2 the tissue and he disagreed with that. The area is starting to fill in with fluid, so it's kind of hard to see the area where it was removed now. They can tell, but it's not as clear to me. One good thing is that he showed me the vertical and horizontal scans and it looks like my scoliosis is gone! :-)
Still sore all the time. He suggested (again) Advil and Tylenol. I have been taking naproxin morning and night, along with some natural anti-inflammatories, so I need to remember Tylenol to help with the pain, but it's just going to take time to heal.
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I won't go into all the details again, but I cried every single day. It got harder and harder for me to go in each day. But I got through it. You will too. Sorry to hear others are feeling teary at treatment. Feeling for you.
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Greetings, from a fellow Titty-Toaster! I've got 19 of 28 done, then 6 boosts...and so far am thrilled that this fair-skinned redhead is barely pink. The docs are surprised too! At my center it's allowed to put a cream on 2 hrs before a session, so I've been putting on calendula cream upon waking at 5:30 am (rads at 8:30...3 hrs later)...put Aquaphor immediatly after rads, then the calendula cream again at bed time. Perhaps I'll add the cornstarch at bed time, but this regime is working for me.
I'm going for 2nd sim tomorrow (to map out boost area) but am really bummed that I'll get a 2nd set of tattoos and have to be on my back or side, having been going prone so far. No fatigue yet either, but I had a nice long break after chemo, as I requested my port be removed before rads cuz I didn't want to lay on it . Last chemo was 1/15....1st rad was March 23rd.
Just wanted to post my positive experience for the newbies who are anxious. Have to say tho, my blood pressure is always very high at the rad onc office....it's fine all week at home....so I must be anxious after all 😜. Hang in there....literally...( my boobs have been hanging without a bra for weeks !!). Ginn
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My diarrhea seems better today. Made it to rads. One more full breast treatment tomorrow then 5 boosts next week. I've had 24 treatments so far and am only pink and feeling a bit like a sunburn. Newbies, this is scary in the beginning but not really bad at all. I lie on the rads table and think "this is saving my life" as they do the treatments. Love, Jean
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Thanks for confirming about the tenderness, Mombie. Today it's not my lumpectomy site but the sentinel node site that is really tender. I will ask tomorrow when I go in. I'm guessing it's just the way things go, but I agree--it seems always a good idea to check.
Thinking of those who are just starting. I'm only a few days ahead of you, and so get the weeping!
I realized I've been too busy to process and let this be what it is. Sometimes too busy to take as good care of myself as I should. I know it's healthy to slow and listen to my heart and let the tears and prayers come, and to pay attention to what my body needs too. To pace--even in the midst of family emergencies. I'm watching for that big sigh in my schedule when I can take some time to swing in a hammock.
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Any suggestions out there for large-cupped wireless bras? I've tried Lane Bryant's offerings (they offer up to size H), but I am afraid there are too many seams in their few wireless upper size options, and the ones that used to fit are feeling pretty tight now.
The Walmart cheapies won't cut it for me and my good sports bras all have wires.
I've been wearing soft, stretchy tank tops and just tucking the fabric underneath, but I need more support because gravity sucks.
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