August 2019 Radiation Starts

MountainMia
MountainMia Member Posts: 1,307

For those of us who are starting radiation treatment this month.

I'll see RO on 8/8 and do the setup CT. Treatment starting around 8/19.


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Comments

  • Farfalla6
    Farfalla6 Member Posts: 105
    edited August 2019

    hi mountainmia;

    I started radiation July 31: had my first three treatments. So far, fine. By the way, I’m also almost exactly 4 weeks from last chemo and no hair yet

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    Hi Farfalla. Thanks for checking in. I'm glad the rads are going fine so far.

    Also, no hair here. Any day now, I'm sure! :)

  • stayingpositive2019
    stayingpositive2019 Member Posts: 31
    edited August 2019

    Hi Mountainmia and Farfalla,

    I am starting radiation on the 13th I will have 21 treatments in total, 16 regular and 5 boosts. I had my planning CT this week.

    I am 6 weeks out from last chemo which was 4 rounds of TC.

    On the hair front, it is growing but only really noticeable in the last week. Still really patchy but growing. Growing more in the back than the front right now lolAnd so far it is pretty white with some darker coming in. But I was about 70 % grey before chemo and regularly dying my hair. I didn’t lose all of my eyelashes and eyebrows, they are just a little thinner than normal

    I am stocking up on cream and sports bras!

    I am ready to get through this.

    Laura

  • flashlight
    flashlight Member Posts: 698
    edited August 2019

    I didn't have to have chemo and my radiation finished last March. Two of the women around my time slot were doing both radiation and chemo I just couldn't believe their strength. Another woman in my group who was so supportive her hair was about 1/4 inch long about 3 weeks later. I used the aveeno intense moisture repair cream in the jar a couple times a day. It wasn't greasy. After my boost I burned pretty bad 2-3 days after the session. Hydrocortisone cream and aloe for sunburn helped a lot. When you see the doctor weekly they check your skin and ask how you are doing. They don't seem to care about weakness and fatigue only that you can still function. If you don't have a grab bar in your bath/shower I would put in one of those suction ones they sell at home depot. The weakness catches up with you and you have been through so much already. As far as the treatment itself it wasn't bad and its fast. Holding my breath was harder as time went on. The staff were very supportive. Best of luck to you both!!


  • loiswb
    loiswb Member Posts: 105
    edited August 2019

    Chiming in here. . I see the RO tomorrow to get things rolling. No dates set yet. Have had lumpectomy x2 (first one with + margins and 3/3 nodes, 2nd one clear margins and 0/9 nodes), and then chemo w AC+T, finished about 4 weeks ago. Have gotten energy back, and hair is growing but not fast enough to suit me and is about 85% white still. I am scheduled to get my port out on Thursday. Will update with more details after tomorrows visit w RO.

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    There are some links that might be helpful, including this on what to have on hand to make radiation more tolerable and comfortable. Mostly if refers to different types of moisturizers, including pure aloe (no alcohol,) Aquaphor, Miaderm, and a few other recommended brands. Also there is some discussion about how to dress both for comfort and to keep greasy salves from ruining clothing and sheets. Suggestions include using men's ribbed sleeveless tank undershirts, and wearing cotton front-hook bras in a size too big. Make sure you get plenty of hydration. Some people comment about getting a headache or slightly queasy after a treatment. That could be dehydration, or stress, or an effect of having to be still in an uncomfortable position.

    Other radiation links can be found here.

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    Also it can be helpful to at least skim through another month's thread on radiation. Here is the link to the July radiation starts.

    https://community.breastcancer.org/forum/70/topics/872296?page=1

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    loiswb, I hope you learn a lot with your RO appt. It's good to hear you have your energy back post-chemo. And hair!

  • godisone
    godisone Member Posts: 100
    edited August 2019

    MountainMia good luck for your treatment. hope it is smooth and you feel come out of it healthy and cancer free. Keep us updated. You are in my thoughts.

  • loiswb
    loiswb Member Posts: 105
    edited August 2019

    Update: had my RO visit today. Will get 33 treatments (28 regular + 5 boosts). Having CT/simulation on Thursday before I get the port out so probably will start either 8/15 or 8/19, but looking like it will go into October, was hoping I could finish by end of September but oh, well. Funny side note: I am 55 years old---RO left room to schedule the simulation and came back saying that a pregnancy test is required on anyone 55 or younger! So, I had my tubes tied with second Csec plus just finished chemo and no period since March---so, he thinks the tubes tied will get me out of it. Sometimes you just have to laugh at the silly rules.

  • Paloma1211
    Paloma1211 Member Posts: 103
    edited August 2019

    Hello ladies! I start my rads tomorrow morning. I'll be having 30 sessions. I'm nervous, but ready for this to be done! Loading up on the aloe, aquaphor and calendula cream. And soft cotton bras.

    I'm 8 weeks out from my last chemo, and my hair really just started growing last week. So far, it looks like it's just the hair that never fell out, and I'm hoping the new growth starts soon. In another thread, the ladies said to expect that around 10 weeks. Here's hoping!

    Wishing all of us an easy go of this. Anything is better than chemo, right? Lol

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    Checking in so far:

    MountainMia treatment starting around 8/19

    Farfalla6 started 7/31

    stayingpositive2019 starting on 8/13

    loiswb starting around 8/15

    Paloma1211 starting 8/6

    Hey Paloma1211, I hope your first one goes easily today. Let us know what you think of the process when you're ready.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited August 2019

    Hello everyone! I will start radiation this month (I hope) I still have no date. I will post when I have more information. Good luck!

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    Hi Yndorian! Welcome to the group.

  • Paloma1211
    Paloma1211 Member Posts: 103
    edited August 2019

    Thanks, MountainMia! First one is done & it wasn’t too bad. The room was cold. The table was hard. Luckily, I only spent about 15 minutes in/on there.

    The majority of the time spent is positioning. Adjusting me, adjusting the table - that took about 10-12 minutes. The treatment itself was painless and fast. A big machine made two circles around me. They didn’t warn me about the flashing light & warning siren - I assume it warns people that radiation is active. I breathed normally throughout. And then it was over.

    I put some calendula cream on before I got dressed. Chatted with the nurse, since this was my first time. She said to be sure to eat plenty of protein & drink plenty of water. Load up on moisturizing lotion. Baby my skin. Do all of my normal activities, unless something is painful.

    One down, 29 to go

  • jenni0102
    jenni0102 Member Posts: 33
    edited August 2019

    Hi everyone! I just started my radiation treatments this week and have had 2 so far. I will have a total of 33. This morning I woke up very nauseous and that lasted for about 4 hours and now I just have a lingering headache. I stay pretty hydrated but I guess maybe I need to up my hydration. Anyone else have anything like this?

    Nothing else to report yet really. I hope everyone has the easiest experience possible with their treatments!

  • ucfknights
    ucfknights Member Posts: 102
    edited August 2019

    hi. Mom will prob start radiation in September but i am wondering. How does the whole set up begin before starting the treatments.

    1st appt for initial consults

    Ct appt??

    Appt w RO for ct results and stimulation

    Then begin rads??

    Help please! I’m very organized and basically need to be in control, of everything it is driving me crazy.

    Thank you again

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    uckfknights, the process is something like what you've listed. Those of us in this group haven't necessarily gone through it yet, since this is August starts. (My RO appt is tomorrow, with CT, and rads beginning later in the month.) But also I suspect that each hospital/clinic will have a slightly different procedure. Your best bet is to call and ask to speak with the RO's nurse. She/he will be able to describe what process your mom's clinic follows.

  • DorothyB
    DorothyB Member Posts: 305
    edited August 2019

    For me:

    had first appt w/ Rad Onc and told her that I wanted to do radiation at that facility; she told me her plan for me (15 regular + 5 boosts)

    They scheduled simulation appt

    At simulation, they positioned and marked me up and took x-rays; I got 6 very small tattoos and some red & blue marker partly covered w/ tape; note that marker will permanently mark your clothes so wear once you don't care about; Rad Onc popped in for just a couple of minutes; they asked me when I wanted to come every day (said late morning or early afternoon); they told me that it would be a bit before they could get me on a consistent schedule and gave me my appts - simulation on Wed and first radiation was the next Mon - the first 6 days of appts were at different times and then all others at 1 PM; "doctor see" appt scheduled for after radiation once a week (on Tuesdays) (this is a 15 min appt for rad onc to look at breast and answer any questions)

    Then started radiation treatments each day - Mon through Fri except holidays or when machine down

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    Thanks, DorothyB. That helps a lot. I hope my treatment appts can be as regular as yours!

  • ucfknights
    ucfknights Member Posts: 102
    edited August 2019

    DorthyB- thanks! Are you not getting a CT?

  • DorothyB
    DorothyB Member Posts: 305
    edited August 2019

    ufc - a CT ? as in a scan type test (not as in chemo therapy)? No, no one offered to do a CT. Do most people get one after radiation?

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    DorothyB, at least some of us will have a CT as part of the set-up. I will do that tomorrow. It's before radiation, not after.

  • roflute
    roflute Member Posts: 7
    edited August 2019

    I had my first radiation yesterday. It went much faster than the initial simulation and setup which were about an hour each and quite uncomfortable. I'm laying on my stomach with one arm stretched uncomfortably over my head with instructions not to move while they did all the measuring, marking and taking pictures. They did suggest to take Tylenol or Advil before the appt. to lessen the pain. The actual radiation wasn't bad at all. I'm scheduled for 20 sessions....16 plus 4 boosts. Let's do this.

  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited August 2019

    Just popped on your thread to wish you all good luck with your rads. I have four boosts to go and then I am done. It passes faster than you think.

    Jenn I had both headache and nausea the first week of rads. I found nibbling on soda crackers 15 mins or so before my treatment and a few more after really helped. It was like reliving morning sickness but it mostly disappeared after the first week or so.

    roflute take the drugs and baby your shoulder (stretch gentle massage) cause although its only a few minutes the daily repetition does mess with your muscles.

  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2019

    Hi all. This morning I met with the RO and had my CT and set-up appointment. For those of you who haven't done it, I'll describe the process I went through.

    First up was basic check-in with weight, blood pressure and temp, review of medications, etc. Then a resident (new in radiation therapy) came in and went over the basics of what will happen (gamma radiation directed from multiple directions for whole breast treatment x16, plus differently directed treatment for the final 4 boosts.) He went over the possible side effects. My husband and I asked a few questions, and then I read and signed the consent form.

    Then my regular doctor came in to see if I had other questions. Then the nurse (Nicole) came in and went over some basic care information, including how to take care of my skin, not to wear underwire bras, how the valet parking works, etc. She left a packet of information for me so I have those things in writing. I can give more info about that another time.

    After that a radiation tech (Barb) came in and gave me an appointment for my simulation. Today was for the set-up, but before my first "real" treatment I'll have a practice or simulation treatment. That will be on 8/19. And the day after that 8/20 I'll have my first real rads.

    The tech Barb took me back to the CT scanner room. I had my jeans and sandals on but had changed on top. No bra or shirt, but with a gown on. I climbed on a platform table for the scanner. It had a support for my knees so they could be bent. It also had arm rests, so both arms would be over my head. Besides the tech who brought me back, there was another tech in the room already, and another one who came in right away. Once I was basically in position they had me sit up. Barb opened a package with a cushion in it, called an Accucushion. They told me it would smell sort of like Elmers glue. She got the cushion wet, and that made it pliable. They put it under me and had me lie back again, and then they pushed it around to create a mold or form, which will hold me in the same position each time I'm there for treatment. Once it dries (which it does quickly) it sets to a shape.

    The other tech had me practice holding my breath to make sure I could do that for 20 seconds. Easy peasy. [EDITED to note, I am doing breath holding because my tumor was on my left. The heart also is positioned slightly left of center. To avoid radiating the heart, breath-holding is done to hold the chest up a bit higher, away from the heart. It helps the angle of radiation to miss the heart and avoid damaging it. If your tumor was on the right, you most likely won't do this.]

    A doctor came in and applied wire stickers around my chest and ribs and upper arm that were going to show in the CT scans. All this time as they're getting me set up, they were covering and uncovering my chest with blankets. It was coolish in there, and have the blankets on helped keep me a comfortable temperature.

    I might be missing some detail in here... After the wire stickers were on, I was moved into the CT for one image with normal breathing. Then moved out. Then moved in again for an image holding my breath. This was all very very fast. But the CT machine is very close to your face. I recommend reminding yourself that it is quick, you don't go all the way in it, and they can bring you out again very fast if needed. Close your eyes and focus on breathing evenly, or on holding your breath when told. I don't have claustrophobia but it still was odd.

    After that a physicist checked the images to make sure they were good, and they were. Then the techs took the wire stickers off and marked lines with a Sharpie marker, and covered the markings with a clear tape. They gave me a Sharpie and more tapes so I can refresh them in needed. [EDITED to note, some clinics tattoo very small dots on rather than using a Sharpie to mark for alignment.]

    Then I was done.

    I've seen elsewhere on the forum some comments from a sexual assault survivor. She recommended making sure your care team knows if you have an assault in your history, because you are lying there with your legs immobilized and your arms over your head. You could feel very helpless, and your care team should know if this will cause problems. ALSO if it will be a problem to have any men working with you when you're in that position, again, your care team needs to know. They want to accommodate you as well as possible so you can get your treatment without more trauma. You have to tell them if you need help in doing that.

    My simulation will be on 8/19, with so long of a gap because I'm going out of town for a few days. Once I start treatment, I'll also see the RO once a week. I asked if there will be any blood tests done and was told no.

    Hope this was helpful to some of you. I'd love to hear if your experiences are similar or different from this.

  • loiswb
    loiswb Member Posts: 105
    edited August 2019

    I had my CT today also. It went similarly to the above description, except that the mold thing was not wet, it was some kind of inflatable cushy thing and then they suck the air out of it somehow and that gives them what they need. I was marked with the sharpie, etc, but then they did 3 "tattoos" which hurt for a brief second. The doctor came in to the monitoring room to check that the scans were correct, but did not come in to where I was. They apparently have 4 different techs (2 were working with me today), all female. I didn't have to practice the breath holding part since mine is on the right side. I haven't gotten any skin care info yet, other than he verbally told me on Monday that he prefers pure aloe. The techs said it will take 7-10 days to figure/calculate everything, and then they will call and set up my schedule. (RO told me it would take a week so we'll see). The whole thing today only took about 15 minutes! After that I got my port removed so I'm happy to be done with that part!

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited August 2019

    Thank you girls for that info! It is very useful. I feel so anxious! Hugs

  • prehistoricmom
    prehistoricmom Member Posts: 63
    edited August 2019

    I'm with Yndorian1, pretty anxious. I really appreciate the blow-by-blow description. Also, congrats GiddyupGirl on only 4 to go. xo

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited August 2019

    I just have received the phone call. My first appointment is next Wednesday. I'm a little worried because I still don't have the full range of motion in my arm. Was that a problem for someone during rads?

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