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June 2020 radiation group

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Comments

  • BCat40
    BCat40 Member Posts: 121
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    JDB, sorry you have such an insensitive RO. Did they give you a hard time when you wanted to stop early and at least offer a different doctor?

    I am halfway through my treatments and am definitely having the low grade throbbing. My RO said not typical but I'm glad to know I'm not the only one. I had a seroma drained which helped a bit but the throbbing is still there.


  • grdngrl505
    grdngrl505 Member Posts: 33
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    JDB1965, sorry to hear that your you RO is such a jerk. Your post encapsulated everything about how invasive this process can be and why I've been feeling so emotional.

    Toria1212, hope you have a fun date night. I went straight from short term disability after my surgery to working from home so I've basically been in sweats and yoga pants since February. I miss dressing up once in awhile. I haven't gone completely plant based. I still eat chicken and seafood, but am trying to cut back.

    cm2020, one of the radiation therapists (techs) at the cancer center advised that the radiation comes out of my back and there is also some targeted radiation to my back. She said some of the patients are surprised when they see redness on their backs and haven't been applying lotion there. It's not in the radiation aftercare instructions to apply lotion to the back only to start after the first appt, but one of the tech mentioned it at my first appt. The instructions everyone receives are inconsistent. At my next appt with my RO, I'll ask more about my treatment plan and where they're targeting the radiation.

    I'm trying to switch to a plant-based diet, do you recommend any cookbooks? The recipes I found on Pinterest are hit or miss. I watched, Forks Over Knives and What the Health and am trying to do what I can to prevent a recurrence.

  • JDB1965
    JDB1965 Member Posts: 4
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    BCat40, so sorry to hear you are dealing with the throbbing too. Yes, I've been told it isn't a "normal" side effect, but is at least recognized as a side effect. They did not want me to stop treatment, but I was 2/3 of the way through and I was stopping regardless of the advice from RO. That last week when they did my right side with the whole breast radiation it felt like an electric shock right through the nipple. It was painful! And all I kept being told was how "unusual" that was, because radiation was not painful. I've been to a patient advocate and I can change doctors, but my surgeon thinks this guy is the best. He is certainly a "senior statesman" of MDA since he has been there over 30 years. I will see him again in August, after he has ran a multitude of tests on me, I will see what he has to say and then we will part ways. I will not be getting undressed, nor negotiating in any form with him. Sometimes the smart ones are just jerks.

  • cm2020
    cm2020 Member Posts: 530
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    grdngrl505. Thank you for the explanation about why to put lotion on your back. That is interesting. For plant based eating here is what I recommend: https://www.wholesomellc.com/blog (cancer nutritionist), https://linktr.ee/wholesomellc (same person but this is a different link that may give you more info), https://www.theveganzebra.com/. Not plant based, but vegan: https://ohsheglows.com/. I hope this helps you some. If you want more vegan blogs, just let me know.

    JDB1965. You have done a great job of standing up for yourself. I hope you last appointment with him goes well. I am a nurse and completely agree with you...sometimes the smart ones are jerks.


  • grandmaadams
    grandmaadams Member Posts: 39
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    LADIES!!! I just read JDB1965's post. YOU HAVE THE ABSOLUTE RIGHT TO REFUSE TO HAVE "EXTRAS" IN THE ROOM FOR ANYTHING … TREATMENT, EXAMS, ANYTHING!!! I have asked "students" to leave, I have refused to have the person following the doctor around in the room, I have signed hospital documents refusing to have "observers" in the room for anything including surgery. Unless you object, those consent forms allow them to use those pictures of you (including video taken during surgery) for anything they want to. READ the consent forms. You can revoke line item consent anytime. They will tell you it's a consent for treatment but the paperwork includes consent for a lot more they don't discuss with you. Just because the doctors and nurses act like it is "protocol" doesn't mean you have to agree. You have the right to refuse photographs, you have the right to refuse tattoos, you have the right to have another female with you and you have the right to personal privacy as well as medical privacy. I was very fortunate that the rad techs were very kind when I broke down in terrified tears, after suffering a PTSD attack, and told them I was a sexual assault survivor. Stand up for yourself and your comfort zone. This sounds like a terrible rant but when I stood up for myself I was polite but firm. EVERY time my wishes were honored with acceptance and grace. I took some medical people by surprise but they accepted my rights.


  • Ohthatcat
    Ohthatcat Member Posts: 16
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    thanks for all the support! I read some of you only have it take “two songs.” You are so lucky. Friday was mapping and today was treatment and I just twitch and hate the arms falling asleep over my head thing, which gives me more anxiety! I pull out all my mindfulness exercises but it is so hard. I’m more like “an entire CD.”

    Do you eventually get used to it?

  • mac5
    mac5 Member Posts: 85
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    JDB1965

    I’m so very sorry you had to endure that! Just my opinion but it takes a special kind of individual to work in Oncology. If they can’t empathize they need to find another field!!! And even if the Patient Advocate at MD Anderson thinks you need to continue with the RO, doesn’t mean you don’t have the Right to refuse! Tell the PA to make your follow-up appointment with the Department Head instead. MD Anderson Staff should know better. Wish I could remember the name of the Head of the Department 9 years ago. He was a huge black teddy bear and held my hand many times.

    CM2020

    Thanks for the well wishes. I’m into my Second Week. One of my friends reminded me the only way to eat an elephant is one bite at a time. This elephant will take me 36 bites! I’m also having IMRT and have been tender and hurting since day one. Trying to convince myself it’s just something to endure.

    Does anyone else count the longest burst of exposure you have during Treatment? So far the longest I’ve counted is 16 seconds in one position

  • cm2020
    cm2020 Member Posts: 530
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    Ohthatcat. Well even though radiation takes just under 2 songs, my entire time on the table is taking longer. The marker lines they draw on me keep coming off before the next day so I am having daily x-rays now. It is frustrating, but there is nothing I can do about it. I am careful with the creams and try not to rub them in the shower, but they are pale to begin with and then I sleep on my stomach (and have hot flashes all night), the stupid lines are going to come off! The stickers they put on top of some of the markers keep coming off too. Then, a couple of times they have pulled the stickers off my lumpectomy breast to apply new ones, but when they take them off they hurt so bad that I tear up.

    mac5. I was very sore and my breast felt heavy the first day. It got better after that until today (just finished day 4). My breast is very tender, heavy, and also I just don't feel as good. My arms even feel tired and heavy. Since treatment this morning I can feel the shift and the side effects have definitely begun. It is so early in treatment that I am a bit worried about the pain and fatigue that may be coming my way. My skin is fine so far though. I have not counted the exposure burst, but may tomorrow if I think of it.

    Question (that I could google but am lazy)...what are the tattoos that I have seen mentioned on the board? How exactly do you get them? My radiation center just draws all over me with sharpie and markers and puts clear stickers on top of some of the marks (they come off...my dog ate one!).


  • Momgr5
    Momgr5 Member Posts: 13
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    I understand the feeling being so opening exposed during that. I went through the same thing. Once I started radiation I felt a little more at ease having woman but I hated it with the men everyday was different who would be in the room. I felt a little better asking for a blanket. It didn’t help covering my breast but it made me feel a little more secure. Each day gets a bit better. Good luck.

  • Momgr5
    Momgr5 Member Posts: 13
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    I am finished with RAD now. But I used so much lotion to keep everything soft. I never peeled but did get rad burn Two days after finishing rad I broke out with full blown hives. Oncologist said he never heard of someone getting hives. I really didn’t believe him. But all going well now. My arm and chest are tight with movement. May need some physical thera

  • Momgr5
    Momgr5 Member Posts: 13
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    mac5. In my cases they actually used pin size needle with very small dot of ink for tatoo. Under my arm I can’t see it but the one in front I see everyday. Looks like a blue pen dot

  • cm2020
    cm2020 Member Posts: 530
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    Momgr5. Oh my word...I already have chronic hives and reading that you broke out in them after radiation is unsettling. I'm glad you mentioned it though. I feel the same way about the warm blankets. I always request them for just that reason. There is only one guy in my radiation center (only one that assists with radiation...there are definitely lots more men) and I am not thrilled with it. I just focus on myself and my breathing and try to pretend he isn't there. I like it much better when it is only the women with me. Gosh I will be so happy when this is over with.

  • Ohthatcat
    Ohthatcat Member Posts: 16
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    @cm2020, yes. I can’t use tapes or adhesives and the marker takes forever. Am I to assume I’ll have to have the marker on and redrawn each time?!? Ugh! It was like 40 mins!

    I had about 8 tattoos with more coming. No idea why so many. There’s even one down my abdomen. I got the UV ones but now I wish I’d gotten the dark ones, as they’d blend it with my freckles better haha

  • grdngrl505
    grdngrl505 Member Posts: 33
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    cm2020, thanks for the plant-based and vegan blog links.

    I have tattoos, too. They put them on two weeks after my simulation before the first treatment. I had to sign a consent form. They are little dots and for the most part blend in with my moles. I have 7 of them and they're so tiny that that techs have to make them darker with a sharpie.

    Ohthatcat, they don't play music where I get my treatments, but mine go by quickly on the days that they're not doing x-rays. My arms fell asleep on the day before first treatment, but they haven't since. Some cancer centers have arms rests so you don't get fatigued, but I have to hold on to handlebars above my head where I go. One of the techs suggested that I not grip them so hard and that helped.

  • missmom79
    missmom79 Member Posts: 90
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    hi cm2020 I started rads the 9th of June so we aren’t too far apart. I too cried and had a hard time.

  • Momgr5
    Momgr5 Member Posts: 13
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    I never had tattoos but I have 2 now

  • toria1212
    toria1212 Member Posts: 71
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    Hi @Missmom79, I just had my 5th(out of 20) treatment this a.m. so I am 1/4 of the way finished. How are you feeling?

    @cm2020 How was treatment? Do you go in the morning as I do? Mine was pushed back 15 minutes(I was told yesterday) today, and it was quick, in and out. Fiance drove me today which was good, as I had a terrible night last night. I took 3mg of melatonin. Went to sleep before 1am, was wide awake from 2-4am. My mouth and eyes felt so dry-I pray, I think, think, think, I ponder, I could have easily cried all night but held back. I feel like I am on a freefall down a rabbit hole. My emotions are not good, and I am fatigued all day. I have pushed through and walked the last three nights, for only 30-35 minutes though due to my wonky hip problem, and I am monitoring my diet/food intake a lot. I simply feel SPENT, and very sad, and anxious. Not so much afraid, as I feel violated-like my life has been invaded by this unseen force, and it feels relentlessly against me.

    I keep investigating alternatives to anastrozole and that's causing me anxiety as well. I've already ordered lunch salade, and food for the kids as I know I don't have the energy to grocery shop and cook today.

    I'm sorry I am whining-I do know you understand. I feel myself sinking, not into depression, but just in feeling overwhelmed by all of this.

    Healing (((hugs))) to everyone today xx

  • ajminn3
    ajminn3 Member Posts: 284
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    I had my first radiation round yesterday. It was longer than usual due to it being my first. So far no side effects. They also told me they don’t do tattoos anymore at my clinic, which was a welcomed surprise. They’ll be doing the wet towel (called a bolus I think?) every other day I have treatment to help bring the radiation closer to the skin. They also gave me the option to keep my mask on or take it off since I’m doing the breath hold. I chose to keep it on since I’m just 2 weeks out of chemo and being super precautious still. It didn’t bother me. I am fortunate that I really like my RO and treatment team. My RO always answers all of my questions and explains things thoroughly, plus he has a good sense of humor, which I appreciate. They gave me some special lotion to use, so I’m hoping that helps my skin. I’ll be curious to see if radiation does anything to my implant on that side.

  • cm2020
    cm2020 Member Posts: 530
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    Ohthatcat. Hopefully some of the marks they put on your will stay (and they will mark them to keep them dark enough) so it won't take nearly as long each day as it did to begin with. Just be real careful where you put lotion so it doesn't help wipe the marks off. It is such a pain in the butt to work around all the marks!

    grdngrl505. My center has arm rests...I can't believe not every place does! My arms don't fall asleep (i have them both over my head and my hands are clasped together) and they even put warm sheets over them when they put the warm blanket over my legs. It is the little things that make a difference. I am sorry your center doesn't have the arm rests. They need to fix that!

    Missmom79. Hugs...this is just so hard isn't it? Has it gotten easier for you? You are one day ahead of me...lucky! Even one day is a lot at this point.

    toria1212. Yes, my treatments are in the mornings. Like you, I am now 1/4 of the way done. I hate everything about radiation! It is SO violating and SO humiliating. It hasn't gotten easier. It just feels awful. I leave feeling like a victim. Everyone is nice and does their best to make it as easy as possible, but nothing about it is easy, and it all sucks.

    ajminn3. Your RO sounds wonderful! Congratulations on finishing chemo. It is nice that they offered you the opportunity to remove your mask. I hope radiation doesn't mess up your implant. My center doesn't do tattoos either. I hope radiation goes smoothly for you with very little (better yet none!) side effects.

  • Ohthatcat
    Ohthatcat Member Posts: 16
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    omg! It’s only my second day of IMRT and my skin is already feeling sunburned. Wtf! Am I going crazy?! It wasn’t supposed to happen this soon. At the same time, I wasn’t supposed to get nauseated from chemo the first day either... :/


    It feels like when your skin was in the sun too long and it gets that cold/hot feeling. Does that make sense?

  • toria1212
    toria1212 Member Posts: 71
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    @Ohthatcat Oh sweetie, I am sorry! I just complete day 5 and my breast is warm.....all of the time. I read somewhere just a few minutes ago to lotion the entire area up to the clavicle(which I have not been doing, I've been doing the breast) so put something on it. I am using aloe the dr. gave to me, and neosporin on my incision(because it was seeping a wee bit) I also purchased CamWell(Super expensive) that someone mentioned here, but I am very fair, and my son had a baseball game once in Ohio, in early April, there was still snow on the ground! And we were in winter coats, and my face got sooo sunburned. So I am sensitive like you.

    I can't tell you what a tough day it has been for me-exhausted! Napped-ish on the couch, and carry out for lunch AND dinner...Oh well. Hope to get my 35 minute walk in later when it cools down and sun starts to set. I am actually afraid to get sun exposure due to my fairness and this radiation stuff.

    I hope your evening is relaxing. Water-LOTS. I am feeling quite dry and dehydrated already. I can't believe it! (((hugs)))

  • cm2020
    cm2020 Member Posts: 530
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    Ohthatcat. Well that stinks! I am so sorry. Your description was so good that it helps me know what it will be like when it starts happening to me. I have not had any skin issues yet, though I had pain the first day (and techs said that doesn't happen...well it did to me so I completely get where you are coming from). Did your RO give you anything to use? I use 100% aloe vera and calendula cream. Go ahead and put something on your skin and do it several times a day. Also make sure your RO knows. II am very fair skinned so I am kind of surprised I haven't had skin issues yet. My pain has increased (no more stomach sleeping) and I am tired, plus I just don't feel very good. Also, a side effect that I don't see mentioned, but I definitely have, is decreased appetite and things just don't taste as good or the same.

    toria1212....Yes to the fatigue! Rest when you need to, that is what I am doing. Are you having pain? We are 1/4 of the way done....

  • Ohthatcat
    Ohthatcat Member Posts: 16
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    I don’t know how to link people, but thank you for sharing and encouraging. Maybe I’m weird but their timelines area always off. The funny thing is I am asian and have nice tan skin, but he said that doesn’t matter I also have resilient skin but apparently that doesn’t matter either. He said young women (I’m 35) take more time to experience side effects but here we are.

    Is it safe to use an ice pack on it?


    about sun exposure...I was outside with my son today because it was so nice, but I think I’m gonna have to stick to the shade.

    Get some rest and thank you for your support!!!!! Enjoy your evening

  • grdngrl505
    grdngrl505 Member Posts: 33
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    ajminn3, thanks for bringing up the bolus. I didn't know what it was called. One of the radiation therapists said that it was used to mimic skin, but didn't explain much more. I can ask my RO when I see him tomorrow.

    I have an implant, too. I'm taking Singulair, which is supposed to help prevent CC and am supposed to start taking Trental and vitamin E after my radiation treatment ends. I read about it in the Kristi Funk breast book. My RO hadn't heard of it, but was willing to prescribe it to me if I wanted to try it after he reviewed the study, which referenced Singulair. My BS said that Singulair is more frequently prescribed for breast augmentation surgery. My insurance didn't cover the Trental, but the pharmacy tech suggested I use Good Rx to download a coupon and it reduced the price significantly. My RO has prescribed Trental before to prevent CC. My acupuncturist also has me taking arnica pellets 4x/day.


    Ohthatcat, my radiation instructions said not to put anything hot or cold (heating pads, ice packs, etc.) on the irradiated skin and to use sunscreen up to a year after on the treatment area. I moisturize 4x/day and have tan skin. Hope this helps!

  • cyathea
    cyathea Member Posts: 330
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    My RO also used a bolus on me for almost the first two weeks of treatment. It felt like a weighted plastic blanket. The techs put it on for the first part of the radiation treatment and took it off for the second part.

    It was new but smelled awful— like mildew or mold. The techs told me that the purpose of the bolus was to concentrate the radiation on the skin. I didn’t ask the technical reason why the skin needs this, but it was interesting to me that my RO directed the techs to cut a hole in the plastic material so that it would not effect the opening that I had from a stitch that didn’t heal properly. (The wound is healed now.) Due to the smell, I’m glad that part of my treatment is done.

    I have vertical bars that I hold above my head during treatment. There is a custom form that cradles my right arm so that it is in the same place each time. My RO said that when I have the treatment on my spine at the end of the treatment that there will be a custom form for my entire spine/trunk area so that I can’t move. The spine radiation will be different as it will be more precise than standard IMRT

  • ajminn3
    ajminn3 Member Posts: 284
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    toria1212- my RO told me to put lotion (they gave me Radiaplex to use) over my collar bone, down over the breast, over the arm pit all the way to my back.

    grdngrl505- I’ll have to ask my RO about singulair and vitamins. I’d really like to avoid CC. Everyone on my treatment team hasn’t been concerned about my implants and radiation, but all I seem to read about are others who either get CC or were told by their plastic surgeon to wait for implants until after rads.


  • cyathea
    cyathea Member Posts: 330
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    To clarify my earlier info on the bolus, the tech today further explained that it focuses the radiation on the skin with the purpose of preventing the radiation from going too deep. So, because I am flat, perhaps it was also used to protect my lungs.

    I counted my longest treatment segment as being about 15-16 seconds. I have that first and then a series of shorter segments. Then I have a few segments that are about 10-12 seconds.

    I also found out today that I’m currently receiving 3D external beam radiation treatment (3DCRT, EBRT) and not IMRT (intensity-modulated radiotherapy). What are the rest of you getting?

  • Ohthatcat
    Ohthatcat Member Posts: 16
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    I just got home from my third treatment and was going to ask about the bolus. Mine is a warm wet towel. I apparently only get it every other day, and it’s only for two different treatment fields (I have four...is that standard?).

    I am confused. They told me it’s to simulate thicker skin, but I don’t understand entirely why only two fields would need it and only every other day. I understand that the dosage is the same, but I guess I’m still unclear on its purpose.

    Other than that, I’m thrilled my time spent there is shorter and shorter each day!


    How is everyone else doing? Does anyone else get their treatments around 10-10:15?

    Also, my info in my signature isn’t up to date so whenever I have a chance I’ll fix it.


    take care all and stay well!

  • cm2020
    cm2020 Member Posts: 530
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    My treatment time every day is 8:45. Get it out of the way early.

    I have no idea the details of my treatment...absolutely no clue.

    I wish I could say it is getting easier, but it isn't. This is just hard and I don't like it at all. But I will continue to show up every day and will be thrilled when it is over.

    Skin is holding up (but it is early), my breast is super tender, and fatigue is about the same.

    I would love to hear how all of you are doing.

    6/20 completed.

  • BCat40
    BCat40 Member Posts: 121
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    I'm down 12 out of 21. BUT I only have 4 "regular" treatments left, then it's just 5 boosts to a small circular area. Some ladies in another BC group told me when they moved on to boosts the rest of their skin already starting healing. I am a little pink but no other skin reactions yet; I have been keeping the mepitel film on 24/7 and patching when needed. I am still having some throbbing/tightness. My RO told me after looking at my 2nd/last planning CT that the seroma I had drained last week has gotten smaller but there is still fluid there. At this point I am not going to drain again. She thinks the pain/inflammation will clear up when I finish treatment. I am telling myself, "just push through this week," then I have 2 last full treatments Mon/Tues and I start boosts on Weds.

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