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Starting Radiation October 2019

kamboka
kamboka Member Posts: 1,049

Is anyone else starting radiation in October? I was supposed to start today but it took them so long to do the x-rays and more markings that they mercifully postponed the treatment until tomorrow--which is October. I will be having 30 treatments over six weeks.

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Comments

  • mocame
    mocame Member Posts: 552

    Hello Kamboka! I am starting radiation next Monday, 10/7. I am doing 30 treatments over six weeks (includes 5 boosts) too!

    I did the cat scans, along with the tattoos and sharpie marks/stickers this past Friday. This Friday I do the simulation/practice session. I'm a little nervous but I guess that is normal.

    Thank you for starting the thread!

  • kamboka
    kamboka Member Posts: 1,049

    Looks like we both will carry over into November. I would love to have fewer sessions but such is life.

    I must admit that I am loving the radiation team. I have two male technicians and a male Radiologist but they make me feel at ease. There is a female Nurse Practitioner and she is the sweetest.

    The simulation was not bad. In fact, it was less painful than I thought. I'm sure you will breeze through it. I am a bit worried about holding my breath. Since I had pneumonia in June, I've not had lung capacity.

    How many tattoos did you get? I had three when I did the CT and today with the other x-rays, they did three more. I told the Technician that after this I'm getting a rope tattoo to connect the dots.

  • mocame
    mocame Member Posts: 552

    I have a young all female radiation crew. They seem very nice but quiet. I am concerned about holding my breath too. I don't know what is normal but it seemed to take me a long time to get consistent breath holding sessions. I would get 2 consistent sessions then either do too much or too little. They said I did well but it seemed like a long time to me! We will see what happens. I'm sure we will get used to doing after a few days. It's good to know the simulations wasn't bad. I didn't know what to expect.

    I got 6 tattoos and then the sharpie marks/stickers where the box goes for the breathing. Getting the tattoos was pretty simple but for awhile I thought I was a human white board with all the marks and things they were drawing on me! LOL!


  • kamboka
    kamboka Member Posts: 1,049

    Yes, today, they did the Sharpies as well as the final tattoos. I had to go to the drug store to buy alcohol to try to get some of it off. At least it was blue and now it looks like I have large veins all over my chest.

    I worry that as the fatigue comes upon me, it will get harder and harder to hold my breath. I practiced for two weeks and only averaged about 22 seconds. My friend said she could hold for 45 seconds. In the simulation, he said we could do smaller sessions of breath holding instead of one long session. I'll see tomorrow how that goes and let you know. I'm scheduled for 8:30 for the entire month. I had wanted later afternoon so I would not have to go back to work. This will make a long day,

  • mocame
    mocame Member Posts: 552

    Kamboka - I hope you have a great 1st session today! I'm working full-time also while doing rads but I was lucky to get a later afternoon spot. My RO nurse said that the fatigue sets in on average about 2 or 3 weeks into it. That's what I'm hoping for! Do you have a good support system to help you at the end of the day when you might be tired? Someone who could bring you a meal or freezer meal so you don't have to cook, or do laundry, grocery shopping, etc.?

    That's what I'm trying to set up now. Plus make an extra meal to put in the freezer and stock up on items that I feel my husband will not be able to find quickly in the grocery store, etc. LOL!

    Best wishes!

  • kamboka
    kamboka Member Posts: 1,049

    Thanks for the advice mocame,

    I live alone and with AC treatment, I just bought a lot of frozen dinners. I was working full time but half the time I was teleworking from home. That really helped. I was hoping for a late afternoon appointment so I could just go home but they don't work late in the afternoon. I'll see how this early morning thing goes and might ask to change.

    I'm leaving now for the first session.

  • kamboka
    kamboka Member Posts: 1,049

    First session went well. They had me positioned quickly and before I knew it I was done. They do three areas so I have to hold my breath three times. I think it's about 20 seconds or less as I reach my lung capacity and want to breath and that usually happens around 22 seconds. They want me to use a prescription cream for two weeks before I start using Aloe. I put it on after dressing in radiology. Then I use another cream at noon while I'm at work. I'll plan to use again around 5pm when I get home and then my mixture of calendula and coconut oil at night.

    The commute to the clinic was so busy this morning that it wore me out so I've asked to move up my time to 0800. I'll see how that goes.

  • mocame
    mocame Member Posts: 552

    I'm glad your first session went well and was quick! It's funny how different hospitals do different things. My RO nurse said the only things they recommend to put on are Aquaphore, Aveeno lotions, and Eucerin lotions. No certain regime except I have to do it at least two times a day and nothing 4 hours before radiation.

    I agree about the commute. To drive to the hospital from work should only take me 25-30 minutes but depending on traffic it can take 45 minutes. I know a lot of people drive even longer than I do and that has to be taken into consideration when the fatigue sets in.

    I hope your second session went just as well. It looks like we are the only two having radiation so far this month!

  • Spoonie77
    Spoonie77 Member Posts: 532

    Hi fellow RADs warriors! Hope you don't mind me stopping in to say hi. I just wanted to stop by and wish you all good luck on your RADS journey. I stated my own RADs journey one year ago today! Though my experience in RADs was a "bit" rough, and I ended up with Fibrosis, LE, and Rib Dysfunction (Costochondritis), many others in our Oct 2018 group did just fine and so have many other members since! The odds are in the favor of y'all having minimal SEs . :)

    I was given many stretches and exercises by my Cancer Rehab PT and RO that helped me to keep from losing range of motion and manage the Breast Lymphedema that developed during my RADs treatments, which I had posted in my RADs group and I'll share here too in case anyone might find them helpful. Two rules of thumb - go slow and gentle and If in doubt, ask your team. Always.

    Oh and before I forget, there's a really great link about What To Expect During Radiation from the Memorial Sloan Kettering Cancer Institute that MissouriCatLady in her June RADs thread and she was right!! it's really full of good stuff, things I wished someone had told me before I started too. Give it a look see, can't hurt.

    Also, if you've not read this thread yet, List of what to do/get/pack to prep for Radiation Therapy, it's also a good place to go for tips and tricks on what helps during the next few weeks.

    Like I said, I hope all of you will sail through treatments with the minimum of SEs. This was our thread Radiation October 2018 and we discussed quite a few things that were very helpful along the way - including different creams, hydration, NAPS, exercise, etc. Maybe it might be helpful to you on your journey.

    My best advice that I can pass on, that helped me is this:

    1) Start using Calendula or other creams 2 weeks prior to treatments on the area of RADs (if one breast, be sure to get up into the armpit and into the ribs as well). This is what my RO asked me to do. Continue as your team directs you, most of ours seemed to say 2- 4 times depending on various SEs.

    2) Drink lots of water.

    3) Walk or move as much as you can, given your own limitations.

    4) Double check with your RO/team about meds you are on, as some on my list were ones I shouldn't take before AND during RADs & after for at least 2 weeks (antioxidants especially).

    5) Everyone is different. Some experience SEs immediately (like me lol), others sail by with very minimal SEs. If you are concerned or experiencing pain/redness/swelling/heavy feeling/etc, don't be afraid to speak up to your team. That's what they are there for! :)

    6) If you do experience SEs, one of the things that SAVED me was "Boob Lasagna" - whuch us a cream called Aloe Vesta that's layered on with special gauze and then wrapped under a compression bra. I think I would have lost my mind the last 2 weeks without it. Ask your team. Also, you can find it on page 6 of the Oct Rads Group.

    Wishing you all the best and quick healing after you get to ring the bell! Good luck Warriors! You got this! <3

  • kamboka
    kamboka Member Posts: 1,049

    Mocame: Today went just as well as day one. I forgot to mention that they do three angles for me. The technician explained that they can do up to four angles depending on where the cancer is--the minimum was two. That means I have to hold my breath three times. I think it's about 15-20 seconds each time but it seems like an eternity. So far, I'm doing okay but only worry about when/if I get fatigued. The NP in the department went over my creams. I told her I was making up this coconut oil/calendula concoction and she said 'okay'. Otherwise, she was recommending the prescription cream for two weeks and aquaphor -- I'm substituting my concoction. She asked me not to use aloe vera for the first two weeks. I have some in the fridge, ready to go.

    Spoon77: Thanks for stopping by. It's nice of you to share your material and your words of wisdom. I've followed some of your messages in other boards. I remember the scanned documents as I read them some time ago. I'll review everything again because I seem to always find something that I missed. I've learned so much by being on this forum.


  • mocame
    mocame Member Posts: 552

    Spoonie77 - Thanks for jumping in and for the great tips and links! I have a few questions for you. Were you given the exercises to do as part of having radiation treatment or just because of LE? I remember doing exercises during my BMX reconstruction and they worked great and I have great range of motion. I want to keep that flexibility.

    Do you know why you can't take Advil or something like that?

    Did they say anything about what type of deodorant/antiperspirant to use or not use? The one I use is kind of thicker going on and I wondered if that would be a problem with radiation even though I'm not having my lymph nodes done, just whole breast area.

    Thank you for all the great information!

  • I started radiation yesterday. I'm having at least 30 treatments. I am wondering if anyone has had experience with a mesh bolus? I'm doing that starting day 13 through 23. I have 2 positive margins, anterior (skin) and posterior (chest wall), maybe that's why? Will that be extra hard on my skin? I have asked my radiation technician folks about different things but they have put me off to “tomorrow" both times. They seem rushed. My entire face time with them isn't even five minutes. I just want to know what is going on with my body.

  • mpv459
    mpv459 Member Posts: 83

    Hello Everyone: I had my surgery in April. Started chemo in May 4AC and 12 Taxol and have a consultation next week with my radiation doctor so I am 99% sure I will be starting in October. So ready to get this part of my treatment over... Wishing everyone well !!!

  • Spoonie77
    Spoonie77 Member Posts: 532

    Mocame -> I was given the first set of images during my set-up and the middle set (about drains even though i never had any) 3 weeks prior to radiation to be proactive in the hopes of maintaining range of motion. The last three (pectoral stretches plus floor) were given to me by my physical therapist after RADs to treat the continuing SEs and also the Lymphedema.

    As far as deodorant I was told Toms Deodorant would be less irritating by my team. However I didn't wear any deodorant in my left armpit pretty much the entire time because I started to develop SEs involving that skin very early on and it hurt too much to apply anything in the way of deodorant thereafter. In my experience personally and from reading these boards it seems to be standard protocol during radiation treatment to ensure that there is no deodorant during radiation. There were a couple times I had forgotten to skip my deodorant prior to treatments in the beginning and Thankfully they had towelettes in the changing rooms along with specific instructions as reminders to remove any deodorant that might be in the area. Same goes for lotions and creams....nothing applied I think 4 hours prior to a treatment.

    I also was told I wouldn't be getting actual radiation to my armpit yet I still turned red sms skin peeled there. Later AFTER I was turning red there and started asking why, I was THEN informed about my axiallary lymph nodes being also treated. <eye roll> After my experience and seeing others have something similar happen as well, my advice to everybody is simply to keep the armpit/rib area hydrated and lotioned up during radiation just in case. It's MUCH better to be safe rather than sorry when the SEs are already baked in so to speak.

    Sorry but I can't remember off-hand about the advil question. I would ask your team.


    DogFacedBoyNamedSue -> I didn't have experience with a bolus but I know there have been several ladies over the spring summer that did. From what I recall, like most cancer treatments, individual results vary. Some seemed to have minimal SEs while others seemed to experience more. Sorry I can't be of more help specifically. Maybe try searching through those monthly rads threads or do a search on the forum for bolus to read more about their experiences? I think this link should take you to a bolus search:

    Bolus @BCO search

  • mocame
    mocame Member Posts: 552

    Kamboka - Glad everything went well again. I haven't heard anything yet about different angles but I have my simulation tomorrow so I might learn more then. Did they tell you why no aloe vera for 2 weeks? That surprised me because I have read so many women on this board using it.

    DogFaceBoyN - Welcome! I hope your radiation treatments go well. It's frustrating when they don't answer your questions. I just keep asking. You have to be your own advocate.

    mpv459 - Welcome! I hope you can get rolling soon with your treatments. You have had a long journey with this and I can understand the need to get it done and back to "normal".

    Spoonie77 - Thank you for the information. I used to use Toms so I will probably switch back over. My team didn't mention not having any deodorant on. Just said to not put any on 4 hours before treatment but I was concerned about the thickness so I might use Toms. I work full-time before each radiation session and don't want to offend anyone at work by going without deodorant. LOL!


  • spratt5
    spratt5 Member Posts: 14

    Hello, After a number of delays, I'm officially scheduled to have 25 treatments on my left side starting on 10/16. I'm a little bummed because my radiation clinic doesn't have a bell or anything - I may have to bring my own, lol! Best wishes to all of you going through this treatment. We are here to support one another during this process.

    Spoonie77 - thank you for stopping in and sharing your experience and information :)

  • Jcscbrown
    Jcscbrown Member Posts: 6

    I started my radiation treatments this past Monday. I have 16 sessions plus 4 boosts. 3 days down so far and my skin looks slightly tan but I have pain on the inside when bending over. Nothing to bad! But it takes me by surprise. Is the pain normal?

  • Spoonie77
    Spoonie77 Member Posts: 532

    Glad to help out if I can! :)

    JcscBrown -> welcome to the "is this normal?" stage of rads! Ugggh the not so fun game we all learn to play. For me, I had pain, tenderness, aching, along with stabbing zingers that would come and go.

    For me, pain with my breast tissue moving became a thing and I was thankful that I still was wearing my front zip compression bras! That seemed to be the only thing that minimized my SEs to a more tolerable pain level during rads.

    So IME totally normal to experience breast pain & symptoms while in different body positions. Be sure to mention it to you team & your RO just so they can keep tabs on what you are experiencing. Perhaps compression might help you too? Wishing you luck!

  • kamboka
    kamboka Member Posts: 1,049

    DogFaceBoyNamedSue: Hope you can get more quality face time with your rad team. It's so important. Hope your treatments are going well, otherwise.

    mpv459: Congrats on finishing chemo and surgery. I think we are all in the home stretch.

    mocame: Not sure why the NP asked me to hold off on the aloe vera for two weeks. I just assumed that she didn't want it to mix with the prescription cream. Could be subliminal but it feels like the affected side is getting warmer. I can imagine that that cold aloe vera will feel really good. Your simulation is tomorrow, right? I started OT/PT about six weeks ago, right after surgery. It has really helped with the cording that I had. I will go every other week during radiation but I have exercises to do at home daily. I highly recommend it as radiation can also cause lymphedema and cording.

    In regards to the deodorant, I was told not to have the aluminum in it. I was using Arm & Hammer and Nivea but actually haven't used any deodorant in about six months since I lost the hair under my arms. Luckily, I don't sweat much and haven't offended anyone yet.

    Spratt6: Glad you are finally scheduled to start. My center doesn't have a bell either but in my head it will be ringing with this is done.

    Spoonie 77: I read some of the 2018 thread. Boy, did you have a rough time. So glad you are able to smile now and be helpful to us 'newbies".

    Jcscbrown: Sorry you are having some early side effects. Hopefully this is the worse it will be. I'm having some muscle pain in my hips but I think it's the table. Other than feeling a bit warm, the breast is okay. They are radiating my clavical area so I worry about my throat being affected.


  • ucfknights
    ucfknights Member Posts: 91

    my mom went in for her simulation Wednesday and the doc wants her to come in Friday? What happens during a simulation? Do they do the markings there too Any reason why??

  • kamboka
    kamboka Member Posts: 1,049

    ucfknights: After my simulation, they did another day of just x-rays. The x-rays took about an hour and I was very tired from laying in the same position. Perhaps, that is what they will be doing. Also, we have to meet with the Radiologist once a week. Maybe it's just to meet with the doctor and discuss the plan.

  • mocame
    mocame Member Posts: 552

    So, I had my simulation today. I found out that I won't be holding my breath for mine. Apparently they look at where your heart and lungs are situated (towards the back or more towards your chest) plus your practice breathing and decide if you benefit from the holding your breath technique. They said I wouldn't benefit from doing it. Because of that, my marks/stickers were taken off for that and were replaced by the bright red marks/stickers for where they will do the radiation. I was surprised how far towards my back and my side, the radiation would be. I'm not having my lymph nodes done. I had to go back to work after the simulation and had a green top on but the bright red marks were showing over top of the neckline of my top. Oops! So I had to put on a sweater on over top and try and wrap it around me as much as possible the rest of the day. LOL!

    Even though the RO nurse didn't say anything specific about what deodorant to use or not use, I asked the technician and she said either no deodorant at all or use deodorant that has no aluminum in it.

    I also FINALLY heard back from my PS office about my ruptured implant. They said I must have the radiation first and then wait at least 6 months until they will even consider exchanging the implants. They also said there is nothing I can do or medication to take to try and prevent capsular contracture.

    My first treatment is on Monday.

  • kamboka
    kamboka Member Posts: 1,049

    mocame: Sounds like the simulation went well. I could feel your pain about going to work with the sharpie ink showing.--LOL I did my appointment in the afternoon so didn't have to worry but I forgot and wore my favorite bra. It now has blue ink stains! I ordered new ones last night. Did you get the tattoos or stickers over washable ink? Did they say how many angles? I am so happy you don't have to do the breath holding. It's not fun for me and I worry about not having the stamina as time goes on. How many sessions are you doing? Did you pick the time of day yet?

    I was supposed to have a breast lift with my lumpectomy but we decided to wait. The Oncoplastic said I'd need to wait at least six months after radiation. She said the treated breast will continue to get small and lift for up to a year afterwards. I am happy now that I'm waiting. You, however, have a different issue and I'm sure you will be happy to have it resolved.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Hi all! Kamboka: I have just finished 23 treatments to my clavical area and, except for the burning esophagus the first few days, I have not had problems again. Today I feel my throat a bit "scratchy" but I think it is because I have a cold. Don't worry about your throat ... my clav area is barely affected ... my boob is red and angry, it receibed 25 sessions, and next monday I will starting 8 boosts to the scar. At least the scar is not near the nipple... Good luck with your treatment, ladies ❤

  • kamboka
    kamboka Member Posts: 1,049

    Yndorian1: I've followed the thread for September radiation and read some of your posts. I was sorry to hear that you had some problems with your throat. I'm so happy to learn that you are at the time to do the boosts. Thanks for sharing that you did not have any problems with the clavicle area. I am trying to stay positive that radiation will be much 'easier' than chemo.

  • mocame
    mocame Member Posts: 552

    Kamboka - I forgot to not wear a good bra too. I had my best white bra on that now has red marks on it. Oh, well. I have both tattoos and red sharpie marks with stickers. The sharpie marks/stickers are to basically show the area that will be radiated. They are at the 4 corners of the area. They said I will have just 2 angles, one coming up from each side. I'm glad I don't have to do the breath holding but then I worry that maybe my heart and lungs aren't far enough back and the breath holding would've still make a difference? I'm a worrier and it seems like a lot of women here are doing it. I asked the technician if most people do the breath holding or not and they said it doesn't benefit most people. I will have 25 sessions and then 5 boosts and I picked towards the end of their day so I could work full-time, then go to radiation, and then go home to rest. My RO nurse said the average person doesn't experience fatigue until about 2 to 3 weeks into it so I'm hoping that's the same with me.

    My radiation techs also mentioned that they will be putting other stickers on me during radiation that will absorb the dose of radiation that I receive. They said it is a quality assurance measure that I am getting the dose that I'm supposed to. Has anyone ever had that done?

    BTW, I had some Tom's deodorant at home so I thought good, I can use that since Tom's is aluminum free...IT'S NOT! I assumed that all of Tom's products are aluminum free and apparently I picked up a Tom's deodorant/anti-perspirant a while back by accident and it contains 22% aluminum! Grrr! So I will have to grab something else before Monday's treatment.

    Yndorian1 - Hopefully your boob will start to get better during your boosts. You are almost done! Yay!


  • kamboka
    kamboka Member Posts: 1,049

    mocame: I am glad you only have two angles and that will make it even quicker. I know some women on this site were upset with the tattoos. I'm okay with them as it just looks like moles. Besides, maybe I'll get a real tattoo on top of some of them later. I was looking online at some radiology shots showing the benefits of breath holding. In the photos, it made a big difference. I suppose it does depending on where your organs are to begin with. That's one reason I'm trying my hardest to keep up with the breath holding. My RO did say at the beginning that if I couldn't do it, there was another way. Not sure if that is the prone position or not. During the treatment, they do put something on a few of my tattoos--might be monitoring stickers. They also put something more heavy on my stomach where a tattoo is. The technician said they would re-take x-rays each week to make sure they have the correct points. That's good to hear.

    I ordered my Arm & Hammer and Nivea aluminum free deodorant online. Now, I don't even use anything. I was going to pick up some more calendula cream at CVS today and thankfully I looked and it contained alcohol. I'm only supposed to use the prescription cream for two weeks, I'll have to order online. I've been putting cream on myself four times a day. I only use the heavy oil coconut/calendula at night.

    So it looks like we both have 25 + 5. I think I'm four days ahead. At least we will be done by Thanksgiving.

  • mocame
    mocame Member Posts: 552

    Not being able to do the breathing technique is troubling me a little bit. The one thing that bothered me during my breathing practice session was that I got 2 consecutive good breathing segments in a row and then we got interrupted by other radiation people coming in and doing measurements and pictures and stuff and then I had to go back and match those 2 breathing segments. I got distracted and had a hard time getting it the same again but they said I did well. In hindsight, could I have gotten 3 in a row if not interrupted and been able to do the breathing technique now? Who knows but I guess there is nothing I can do about it now.

    Is there anyone that didn't use the breathing technique or didn't use the breathing technique and not be in the prone position?

    So what are the rules about no alcohol in the creams and lotions? Only certain types of alcohol? I've only been told what types of lotions/creams my RO staff recommends. They are Aquaphor, Eucerin lotions, and Aveeno lotions. All three contain different types of alcohols that are inactive ingredients in them. Can someone give me an education about what type of alcohol we are supposed to stay away from?

  • Spoonie77
    Spoonie77 Member Posts: 532

    Toms makes an aluminum free version of their deodorant. Mine just said 24-hour order protection natural long lasting deodorant unscented. Says no aluminum on the top of the back)

    Here is what the container look like:

    image

    image


    I don't remember my radiation oncologist or my team saying anything about alcohol in creams per se, however I used the basic calendula cream from Walgreens and that helped tremendously. I don't have a bottle of it laying around to check if it had alcohol in it or not but I'm sure in general they don't want alcohol to be one of the top 10 ingredients in the cream because it acts as a drying agent I would assume and probably can sting If you have open wounds at the time.

    Creams that were suggested by my team were Eucerin, Nivea, Aquaphor, AloeVesta, Mia Derm, or calendula, pure coconut oil as well.

    image


    Also here is a diagram and a couple of pictures my radiation oncologist drew for me and gave me prior to radiation.

    It helps explain why gated breathing treatments are helpful for some people and not for others.

    Also I received rays from four different directions and her image helped me to visualize how they were avoiding treating areas of my lungs ribs and heart Etc. Maybe this will be helpful for someone else too.

    image


    image

    image

    Hope something helps for you guys here. Still cheering you on! May you all enjoy your weekend and your break from RADS!


  • mocame
    mocame Member Posts: 552

    Hey, Spoonie77, thank you for the diagrams. You got so much more details than I did! Okay, so I think what I'm gathering from your pictures and information on the breathing treatments is that my heart may be towards my back farther or my breathing is low in the lungs and doesn't move my heart much out of the way. Hoping it's more towards my back. Side effects to the heart was not one of the side effects mentioned by my RO but she did mention possible side effects to the lungs. She said that the SE to the lungs was a cough that wouldn't go away until treated with medication. She didn't make it sound like it would be a permanent SE.

    So, I was trying to understand the last hand-drawn diagram. I am getting radiation from 2 angles (1 from either side of me), which looks like what the diagram above is showing with the 2 crossed lines? The radiation would then intersect with the other one at a higher angle which may miss more of the heart and lungs? Is that right?

    I used to use Tom's and just stopped for awhile but had bought this other Tom's deodorant/anti-perspirant by accident thinking that all of Tom's products were aluminum free but I guess I learned my lesson to ALWAYS read the labels. :)