Winter 2015-16 RADS
Comments
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Kate! I'm giggling over here... My techs always say, "OK, here we go!" and I think of the "Here we go/Peter Pan" voice from the opening of every Disney movie... I expect to see Tinkerbell perched on the machine somewhere waving at me... You're right, it's the little things
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Hi All - never heard of Bolus until this thread and I am post BMX too - 1st tx is Monday so will have to ask and hoping for the cold gel LOL ..
PattyMeg - Thanks for the recipe - I am so not a juicer and got a NutriBullet as a gift from a friend and looking for ideas and recipes. Good luck with Tamoxifen..
TallnTerrific - Love Love Love your pic of your beautiful Grandkids - definitely what it's all about!!
theearthlaughsinflowers - at my last RO appt I made her touch me everywhere the radiation would hit - all lymph nodes included. I had 2 lymph nodes positive and they were the only 2 taken out so I am nervous about the rest and wanted to be sure all included. I did not specifically ask about boosts but plan to..
Twnkltoz - thanks for sharing your blog details on Sim and 1st tx and agree - sometimes I find myself obsessing with other survivor stories and when read or hear of one where it returned always wonder if that will be me some day - then just try and focus on one day at a time and count blessings it was found in time ..
justmaximom15 - Thanks for sharing about working thru tx .. I worked thru AC and Taxol crushed me - hospital admission, reactions etc .. I am scheduled to go back to work full time on 2/15 and will have 10 of 34 treatments down - hoping to be OK ..
Catfurr - hope your skin heals quick - hugs to you!
Zelda33 - hope the rash/blisters get better for you and that you find relief from the heartburn and cold sores - both not fun! I had to go on Valtrex for sores and suggestion for heartburn - Omeprazole 1x per day in morning and Pepcid during day
phoebe58 - thanks for sharing your work info .. I might consider going back part-time to start ..
Duzy - we are starting on same day 2/1 and on similar plan ..
StefLove - Congrats - love the pic - you look beautiful!
KateB & JerseyGirl - Dr Evil and Peter Pan - love it!! Hilarious!
All- found very interesting and somewhat scary article on a possible link between taking antioxidants and cancer recurrence - thought I would share
https://www.washingtonpost.com/news/to-your-health/wp/2015/10/14/antioxidants-may-give-a-boost-to-cancer-cells-making-them-spread-faster-study-suggests/Hugs to all
Mary
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Kate and Jerseygirl22 - love the visuals of what I will receive when I get the bolus. I will let you know. All they said was they put something on the area every other day. Should be interesting.
Mdoc524 we will need to compare notes as we go along. You have done a great job of keeping everything on this thread up to date and has helped with all the great tips.
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The bolus here is a plastic gel sheet. The only problem with it is that it is cold! The techs try to warm it up first, but it doesn't help much.
Jerseygirl, the techs here say "Here we go", too. They must teach that in radiation school.
Tomorrow is my last treatment. I haven't done too bad, except I've had some incredible itching in my armpit for a couple of days last week. I would wake up at three in the morning and not be able to go back to sleep for all the itching. The RO nurse and people I work with suggested a bunch of things, but the funny thing is that what worked best was taking a day off of putting anything on my skin. I can't imagine my RO would recommend it, and I don't know if it would work for anyone else, but letting it dry out for a day helped a lot.
Otherwise, I have some peeling around the edges of my armpit, and the armpit itself is lighter. It seems like the peeling skin sort of wears off from the friction in the armpit.
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mdoc, I got pushed back another week due to my last (third) incision not healing from Dec. New start date is Feb. 9. Soon I will be in the Spring Rads group if this keeps up. I expected to start Dec. 1! originally. Saw the dermatologist today, she says hair follicles go to sleep and that's why my hair is falling out. They take a break! : ) Due to surgeries, medication (letrozole) and radiation. And the good news is the hair does grow back when that's all it is. She suggested Rogaine if I want to make it thicker but I don't know - I think it has bad chemicals in it. I'll see if I can do without. Tatoos are 1/2 the size of a freckle - worth it. It was quick and easy. I have my calendula, aloe, Vaseline, aquafor. Ready to go and get this over with.
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TallnTerrific & Mdoc: I had my first boost today and because my tumor was in the "tail" of my breast it is very close to my lymph nodes involved so the good news is that they are getting the boost like I wanted. My first 25 visits were whole Breast and also included the other node areas (tired now so can't think of their names)- under my arm, along my collarbone and between my breasts. I will be getting 8 boosts
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I should clarify- I had all my axiallaryy lymph nodes removed. So they aren't getting boosts because they are gone😊 But the area is getting boosts!
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Twnklotz: YES. Sharks with freakin' lasers on their heads! You just gave me the mental image I'm taking with me into rads--thank you!
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I realized today that the main machine looks like the captain's wheel in the movie, WALL-E... I had to stop myself from giggling over it.... it's the little things... 8 down, 22 to go!
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Marijen - sorry you got pushed back again - hope the 9th holds true for you
theearthaughsinflowers - glad you got some answers and are comfortable with your boost areas .. I plan to ask about mine -thanks for sharing!!
Cubbie - glad you are hanging in there and WooHoo for your last treatment! Congrats!
JerseyGirl - Love Love Love Wall-E and so miss my boys being little and watching all the fun movies! They are 9 now and look at me like I am crazy if I even suggest watching a little kids movie - Star Wars and Goosebumps is what we are watching now - miss Wall-E, Nemo, Toy Story, Cars, etc .. "Just Keep Swimming" - love Dori
Mary
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cubbie - i get a bolus tomorrow at my #2 treatment. Had #1 today... went smooth. 1 down 27 to go!
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Hi, I've been following this thread for a while and had my first radiation treatment today. Thank you to everyone that has shared their experiences!
I'm not getting a good feeling about my doctor so far, but I wonder if I am being overly sensitive. I saw him right after surgery in July and really liked him at that time. I had my CT scan a few weeks ago and sim last week. The doctor stepped into the room for a moment each time and looked under the cloth with a brief comment about checking to see if everything was lined up. I don't believe he said hello or goodbye either time. He wasn't unpleasant, but not friendly either. But I didn't expect anything since I knew it wasn't an official doctor visit.
I was told that Wednesdays will be the day I see the doctor weekly and since today was my first treatment, I was taken to an exam room and had vitals taken, then given a gown to change into and told the doctor would be right in. The doctor didn't come, but a tech came and told me to gather my belongings and then she took me to the treatment room. They started by taking X-rays and said they would do the radiation after that. While I was on the table the doctor came in and said he was going to check my position. Then he lifted the cloth and checked. He said, "How are you?" I replied, "Fine." He then said, "Your X-rays look fine. We'll get started." And then left the room. No hello or goodbye. At this point I assumed I would be seeing him after the treatment.
I was given the treatment and it went fine. Then a male tech came in and said I was done and moved the table down. I got up and the tech left the room. I didn't know whether to get dressed or not, so I followed him out and asked if I would still be seeing the doctor. He said, "Sorry, no, he already saw you. You can get dressed" I replied, "Oh." He then followed with, "If you have questions, I can take you to a room and have the nurse come talk to you." I was feeling kinda pissy at that point and just said, "No thanks. I'll just check online." So I got dressed. When I walked out the doctor was in the hallway and told me they needed to get my vitals. I replied that they already had. He then asked how it went and I said, "Fine, fine." and kept walking. I was upset and just wanted out of there at that point. Also, I was pretty sure the only reason he was talking to me is because he either overheard the conversation with the tech, or the tech told him I seemed upset.
Is this normal for RO's? Did you get any kind of "education" like for chemo? When I saw him back in July he was informative. But since then, he hasn't gone over my treatment plan with me or explained how he arrived at it. I was told over the phone that I would have 30 regular treatments and 6 boosts. Nor have I been told what to expect or if there is anything I should be doing differently from normal. Maybe since he had a consult with me 6 months ago, he doesn't think I need any additional info.
Thanks for any feedback.
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Yesterday was my "sim"? day. My RO whom I like a lot, met me in the room when I was on the table just like you. I see you had several opportunities to ask questions, you could have asked a general question like what do I need to know about radiation doctor? But instead you said fine and no thanks! ?? You could have said I expected more information before we started but you didn't. It looks to me like you helped the situation along, on the other hand, they didn't seem to friendly to begin with. Nothing bad happened so you can give it another chance tomorrow? That's my feedback, because you asked.
My "radiation therapist" was quite friendly and we'll probably end up being good friends by the end of six weeks. I feel grateful for that. We talked about her yardwork, her husband, my yardwork, etc.
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Thanks, Marijen. Yes, I did help the situation along by not asking questions when he came in. I was given to expect I would be seeing him in the exam room, so I thought it got switched to after the treatment. I never imagined that a simple "how are you?" qualified as a normal appt. But I'm glad to hear that is more the normal doc visit. So I guess I just need to be more prepared for my weekly doctor visits to take place while I am actually being given treatments.
The techs are all polite, but not informative. I ask questions, but it doesn't prompt them to be more forthcoming with what to expect. I think having to draw every bit of information out of them has made me more sensitive during the appointments. I think I need to just simmer down. I got used to friendly staff at the chemo place that always let me know what they were doing and why.
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I hear you on having to "drag" the information out, and for me that applies to doctors and family members alike. Techs and nurses are mostly afraid and I think trained not to respond and give information that may cause further questions and problems. It is exhausting. Somedays you are up for it, somedays not. One thing to remember is everything you say will probably be entered into your electronic file, like reading you your rights. Non-compliance, moodiness, anger, all that will be judged. If you are sad they may say you are depressed. Or not. Where I go they add a neuro psycho evaluation. Really? Are they all shrinks? It's just not fun. So I try to be as amenable as I can. Going off the track here, I know.
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Congratulations to everyone on your progress, starting or finishing. Had 12 of 33 today. All is doing well for me, just starting to pink up a bit. Chest above the breast is starting to get a little itchy. Trying very hard not to scratch. Breast and rib area seem a little tender.
My husband says when I am done he won't need a nightlight, I should be glowing. Would love to find some kind of glow in the dark cream to really scare him. He is such a joker and tries so hard to keep my spirits up. Would love to see his face if I did glow in the dark.....
I think my techs take a cue from the patients if I go in quiet they don't say much. If I go in and comment then they seem to feel at ease and carry on a conversation. I think it has to be a tough job I am sure many of their patients are really sick. It could be a depressing job for them at times.
Thankful for the good weather and roads we have had. Praying that winter holds off.
Helen
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I like my RO quite a bit...(of course, I am done with Rads, so easier to say that in hindsight, I suspect). My consultations with him were as follows: met with him for an initial consultation where we discussed the treatment plan. Then, during sim, he came in, said hello, looked at what they were doing, asked if I had any questions, and confirmed the number of treatments I'd be having and that he'd see me weekly during treatments. Then, on Monday (the day I saw him each week), they took me into an exam room, took vitals and updated my medical history, and then he came in, looked at the breast/treatment area, told me about my weekly X-rays, reminded me to keep putting aloe on it, and asked if I had questions. Honestly, everything went well and there wasn't much to ask him, but he did say hello, goodbye, made sure I had no questions, and even said 'Happy New Year' on New Year's eve.. :-)
I will see him one more time, in a little over a week, for a one month follow up.
Honestly, though there were occasional scheduling hassles, the techs were so nice and helpful and rads so uneventful for me that it probably wouldn't have bothered me if he hadn't been approachable, but he was (I did have some fairly significant skin issues/burning and peeling, but they didn't start till after Rads were done....I never bothered to call RO's office about the issues however, since I am healing quickly. Will probably be mostly healed by the time of follow up apt.
That said, I think it is worth speaking up if you do have questions.
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Thanks for the feedback. I'm glad to hear your rads went so well, Octogirl and glad things are going well for you, Helen. I have a list of questions, so I'll try to get them answered or leave them with the techs for him to answer. I was just so rattled by things today. I'm sure it will be fine.
Marijen, that is interesting and a good point.
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tam-iam I don't think you did anything wrong. You just finished very strong chemo and that's tough I know. I would be persistent and say something next time. Don't let anyone treat you badly or as a number not a person. Docs should heal the person not the disease.
I had a student that works with my ro be rude and condescending towards me at my sim. I told my ro's nurse, and emailed my ro. Ro called me to talk and was great. Needless to say that student isn't getting anywhere near me again. And my ro is wonderful. I actually like her better than my mo.
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Tam-iam, Your weekly visit with the RO should have taken place in one of the exam rooms. This is a very tough time and you have every right to feel the way you do. Some of us are more sensitive and feel more vulnerable from time to time. I happen to be one of them. Marijen made some good points about speaking up. I always had a list of questions for my RO, but you weren't really given that chance. I have found,from time to time, that doctors, no matter how good they are, forget to relay important information to patients and you feel like you just slipped through the cracks. I learned this the hard way two years ago when I had a revision surgery. It has made me tougher and I speak up more for myself. Before your next RO visit Let the nurse know what happened and how this made you feel. Make sure she also knows that you didn't get any pre treatment education. I'm sure she will relay your concerns to the doctor. Good luck!
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I found my ROs office to be a little disorganized when it came to patient education. Several times people would say to me after weeks of treatment, "Did someone tell you about (item)?" And no one had. I didn't know about the other skin creams they recommended, etc. Stuff like that. I thought that maybe it was because my entry to their office was a bit disjointed because after my initial visit I had a wait for healing of my surgical incisions, then another wait for a second opinion. I thought maybe they put off talking to me about these things because I wasn't going to start right away, and then later when we got started, they assumed they had already talked to me since I'd been in a couple of times before. But maybe RO offices just aren't very good at patient orientation sometimes.
Today was my final day. I guess the good news is that I should finally see an end to this itching in another week or so. It sure is going to be odd to not have to go there every day.
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yay for finishing Cubbie! Happy Dance....
Octogirl
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Cubbie....woo-hoo. Congrats for being done with rads....it IS a big deal!
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yippity yay Cubbie ! congrats on finishing a milestone
Tam-iam I initially found the rad side way less personable, and had to wait til tx started to get info, and felt that I was just one of many on a treadmill, unlike chemo. New RO seems uber busy and stood in doorway clutching doorjamb asking if I have any questions or side effects yet... my other RO went off on maternity leave, so he is now doing extra..... sigh. But he did answer questions when I said I had some. Rad techs are great though.
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Thanks, everyone, for the comforting words.
Cubbie, congrats on finishing! That's wonderful.
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congrats, cubbie!
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Yay Cubbie!!!! Let the healing begin!
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my RO is great--he replies to my emails and takes time with me in the exam room. That said, I've still learned more on this board about practical ways to manage RT than I have from him/his office. This is a long-winded way of me saying that I'm very grateful for all if you, your stories, and your tips. Thank you.
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I found my RO office was organized with a nurse to speak to me along with handouts and my RO will even return my messages with a phone call. BUT the first treatment it did seem like it was a lil disorganized with the nurses and techs, but i'm sure it will all work itself out.
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