Starting Radiation October 2021
Hello! Wanted to get a thread started for October radiation, I've met with my Radiation Oncologist and I'll be receiving 30 treatments. I also had my simulation this week and have my markers in place. Technically I start September 30, but what's one more day!
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Hi NatureYogi,
Glad you've started this thread! How great that you're already past your simulation. You will find a lot of wonderful support as you go through this. I am almost done. I've finished 31 of 33 treatments, so I have the last two coming up this week. The love and support from others going through it at the same time made such a difference for me and I know it will for you, too. We are able to share our experiences and resources and just be there for each other. I joined the August group which has turned into the September group since most everyone is still going through the radiation. The September group will lift you up, too.
Will you be having physical therapy to your arm during radiation? I had 11 nodes removed so I have some cording to resolve but it showed up even before radiation. I have kept myself moving and walking a ton throughout radiation to stay ahead of fatigue. I am eating healthy with a ton of protein and drinking a ton of water, but I did not have chemo immediately before radiation so that truly may account for the lack of fatigue. My skin is fine (so far) after 31 treatments. The nipple became sensitive after #25 but nothing hurts. I just have the world's deepest tan.
I hope you will do extremely well and will sail through your rads.
Love,
Esther
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Hey NatureYogi. I'm pretty sure I'll be having radiation in October; I meet with my RO next Wednesday. To say that I am dreading radiation is putting it mildly... I'm terrified. I'm 3 1/2 weeks out from my mastectomy and lymph node removal and still quite sensitive/tight from surgery. I hope the ROM exercises I'm doing will allow me to get into place for rads without too much discomfort.
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Esther01-I had nodes removed as well, been to therapy and my ROM is good. My arm/hand kind of fell asleep during simulation, but other than that all is well. Was there anything in particular that you put on your skin for healing? Glad you are doing well and that you are almost complete! I'll be having my supraclavicular nodes radiated also, they said my throat might get irritated. I'm going to go through the September thread and read up, this site really does help!
LW422-4th/5th week you will feel a lot better, keep doing exercises. I've got most of my feeling back, just a little numbness under armpit and part of incision. I've learned how to dress, but with radiation, I know I'll be going without bra at one point. I'll use scarves to camouflage my chest area. Bought some men's tank tshirts. Simulation not bad, you just have to lay still for a good amount of time.
I have my markers, just have to keep them from falling off for the next two weeks, they did say if they get my 'plan" into place earlier than September 30 I can start sooner!
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NatureYogi--I had surgery August 23 so it appears I'm about a month behind you recovery-wise. I'm not sure exactly when my radiation will start but I guess I'll find out on Thursday. I didn't expect my surgical recovery to be so difficult with tightness and sensitivity, so that has had me down in the dumps. I keep thinking that when I start to feel better physically my mental outlook is bound to improve.
Ugh, the thought of supraclavicular nodes radiated terrifies me. One poster on the IBC thread had a stroke after radiation damaged the vein in her neck. Why does all this crap have to be so terrifying??? I just hate this SO MUCH.
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That is really scary about the stroke! Next time I go back, I'm going to see what they say. It is so hard that we don't have any control, I worry about the cancer coming back too. Are you getting the supraclavicular nodes radiated too? I guess we will be a nervous wreck together. I go back to MO for check up October 1, she wants to discuss possibly taking Xeloda, even though I got pCR.
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I don't know anything about my radiation plan yet, but since I have IBC I'm sure they'll radiate everything. I also had pCR and no nodes positive though they removed 32 of them. That still makes me mad; why do they have to put me at risk for lymphedema by doing that. I'm sure my armpit will never be the same so one more thing to endure.
I see my MO on Tuesday and I'm wondering if he'll try to talk me into more "treatment" (like xeloda) but at this point I'm not feeling like I will agree to more chemicals. I just want to feel normal again. (My cancer was PR+ but I have been treated as TN.)
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Hi there! I started rads on Sept. 7th (25 days). I joined the August group as I was supposed start in August. It's a great group. I didn't see a September group so decided to check in with you all as my last session is scheduled for Oct. 11th. I'm 8 sessions in and just want to get this done with.
My rads was brought on by a tumor that reared it's face after I finished ACT & Carbo, a BMX and a few cycles of Xeloda. I had "blemish" that was excised during my exchange surgery and, well, here I am...having rads and preparing myself psychologically to begin Xeloda again once I'm finished being zapped.
Hi Esther!!
Hoping you all have a wonderful night!
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Hi Serendipity; glad you could join us to finish up your rads. So sorry you had a second DX so soon.
I'm wondering how the determination is made on whether Xeloda is recommended for a TN. I see my MO tomorrow and I'm afraid he will "recommend" that I take it. At this point I am so freakin' sick of feeling awful; I just want to be done with treatment. Plus after reading about Xeloda SEs I have to say that I would be really afraid of that stuff. I hope the Xeloda is easier for you this next time.
I can feel my anxiety level building up as I anticipate my RO appointment on Thursday. I wish I could get my mind in a positive place but I'm just so tired of cancer treatment.
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Good morning. Thank you, NatureYogi, for starting this thread. I am not due to start rads until the end of October or early November. I have had 9 of 12 weekly Taxol treatments and have been blessed with minimum SE's. I am tired the day of treatment, but minor fatigue otherwise. I am curious if anyone who has had the 12 weekly Taxol followed by rads if their fatigue was worse with rads or chemo. I have been following several of the rads forums and it seems like fatigue is a big issue. Thank you for any insight you can give me.
Blessings to all!
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LW422 - For me, when I was prescribed Xeloda a year ago, my MO described it as precautionary measure because I was/am triple negative and the cancer did not respond to the taxol and spread to my lymph nodes; maintenance of sorts, and I was only supposed do to do 8 cycles. I barely got through 3 cycles. My SE's though, were different, I didn't suffer from hand and foot, Thank God, but I was in so much pain, again, I was only 10 weeks out from having my last chemo infusion, so it just could've been the lasting SE's and the Xeloda on top of it. UGH! I don't even want to think about taking it again. I hope you get good news at your appointment today!
Hi swimgal!
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Thanks, Serendipity. I saw my MO yesterday for followup and he said I wouldn't be receiving any further treatment. So no Xeloda for me! He indicated that since I had "pCR" that it would not serve any purpose, so I was glad to hear it.
Hi Swimgal. Sorry I can't answer your question about fatigue since I haven't started rads yet. You could probably get more information from one of the rads threads that have been going on for a while.
Has anyone had their simulation yet? Mine is tomorrow and I'm a nervous wreck. Not sure how long it will be between the simulation and my rads beginning. Argh.
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LW422 - simulation takes about an hour. I was a wreck too, but it wasn't bad at all. Worse part was having to have my arms above my head that whole time. I started rads fours days after my mapping was done.
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Thanks, Serendipity. I need to work on my mental outlook and decide that the sooner I get started with this, the sooner I will be FINISHED with it!! I'm going to ask about getting my appointments in mid-day if possible. I'll have to travel 45 minutes in Houston traffic to get to the medical center each day and I'd really like to avoid rush hour if at all possible. Rush hour will add significantly more travel time...ugh.
In other news, I'm finally getting some actual hair on my head!! I'm so excited so see growth and not "shiny bald head" in the mirror.
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LW422 - That was my mind set; I was so frustrated with my RO and my PS when they wouldn't let me start back in August. My experience is that it seems to be going quickly.
My appointments are at 10:45am per my request, but I only have a 15 minute drive. It literally takes me longer to get there then the actual appointment. I hope everything goes well for you tomorrow.
Yay for the hair starting to return.
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The simulation isn't bad, just like Serendipity said, you have your arms above your head for quite a while. One of my hands went to sleep! Other than that it was fine and they tell you what to expect during treatment. I'm with you, the sooner we start the radiation we can get this over with and get back to our lives!
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I had my consultation and simulation with the RO earlier today. It was no big deal and I was glad I have sufficient range of motion in my surgical side which made it easy. They made my body mold and marked all over me with markers; they don't do tatoos. My treatment starts October 4 and will be every day for 6 weeks. I hope I can keep from washing the marker off for the next week or so!!
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Starting 25 treatments sometime in October.
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Hello there RHBarker and welcome. Let us know when you get started; we can all compare how we're holding up!
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Congratulations on the weekend OFF! Yay, no rads!
Hi RHBarker and Hi Serendipity
I'm going to make a note of your final day - October 11- so I can send you some virtual hugs, flowers and balloons. I wish I could send some to you all. I know this is hugely stressful. I'm finally done with rads as of Tuesday and already do NOT miss that yucky daily commute. I forgot to bring the gift I made for the rad techs on my final day, and after it was done, I sprinted out of there so fast that I forgot to make my follow-up appt for two weeks - I'll wait and bring my gift then. Not sure if I mentioned it here- I was so nervous about the "boosts" and tried half-heartedly to negotiate my way out of them (no dice) and it turns out, that last week was the home stretch of treatment because no more breath holds and it was only to one area and went really fast. During the last week I was able to ditch all of the sticky markers and that felt good.
NatureYogi, I'm so glad you got your mapping out of the way and that it wasn't so bad. The arms falling asleep is kind of the worst part. At the end of each rad session, they would say, "You can move your arms now," and I would say, "Uh, no, actually, I can't." I'd have to reach up and over and physically pick up my sleeping arm with the other half-asleep hand and bring it down.
You asked about creams... I ended up just using Calendula cream by Boiron. I couldn't handle the greasiness of Aquafor. I even sent away for Radiaplex because there was a study that it helped reduce radiation dermatitis, but that was kind of a big fail for me. I didn't see a difference so I went back to the calendula only which I like because it's creamy and soothing. I also drank a lot of water and ate extra protein to help my tissues and skin but I guess I was already doing that anyway.
I was so nervous about the supraclavicular nodes! But, I didn't get red up there at all. Just a huge rectangle of reddish tan across my left breast/chest and upper back. They did say that the left side of my throat might get red but it never did. I am still lotioning it for a few more weeks anyway. I hope everyone sails through without any supra node issues. This stuff is hard enough without the extra anxiety we go through the more we learn about it.
LW422, I'm glad you didn't need tattoos. Are they covering your markings with stickers? I was so worried the stickers would come off in the shower that I would put my hand over them so the water wouldn't hit them directly. I did get one waterlogged by accident but managed to keep it on until they could replace it the next day.
Something just occurred to me... and this is only anecdotal... My doctor was saying recently that we don't need to shower every day because hot water and frequent showers strips the protective oils from our skin and dries it out. She said showering is only important for three bacteria-haven areas - the groin, the armpits and the feet. So throughout rads, I showered only once a week. I am wondering now if that little experiment is what helped my skin stay intact. I did notice that the lotion would build up, but I kind of liked being chronically lubed up because that way it didn't get dry and sensitive. Just a thought!
Hope each of you are having a beautiful rads-free weekend!
Love,
Esther
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Hello!
Thank you for starting this thread. It was so helpful to have a chemo group on here, so I am glad that we will have each other to help get through radiation. I had my planning simulation appointment yesterday and had the tattoos placed. I will need a total of 6 weeks of radiation. 5 weeks of whole breast/surrounding lymph nodes and then the last week of boost radiation. Waiting to hear back to be able to schedule my first, but looking like it's going to be in about 1 week or so. I am so looking forward to getting through this and putting it behind me. We're nearing the end of active treatment!
Did anyone else on here have TC chemotherapy? For those that did, have you had any hair regrowth yet? I had my last treatment earlier this month and cannot wait for my hair to grow back!
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Hi Esther. Yes, I have the clear tape stuff over my sharpie markings... very fashionable!! I'm nervous about them coming loose in the shower but so far, so good. Girl, I can't imagine showering only once a week; I LIVE for my nightly shower... it's the best part of my day. Seems like they would want the skin cleaned of any lotion residue for the treatments??
Hey Maura1. Sounds like your plan is the same as mine... 5 weeks then one week of boosts. Hopefully we'll sail right through them. I start on Monday... YIKES!!
I didn't have TC chemo (I had AC/T), and my last chemo was July 29. I started seeing little "peach fuzz" on my head about 4 weeks after chemo ended. Right now I have pretty good growth going but it's going to take time. I'm just happy to see some growth up there!
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Maura I can't help answer your hair question as my last chemo infusion was Aug 2020 but today I completed day 17 of 25 of rads. I hope your hair begins to grow soon!
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Serendipity--Wow, you are getting close to the end! Good job! How are you holding up? I hope you're not having any awful SEs to deal with.
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LW - at my first visit they told me to expect to start feeling fatigue and possible SE's week 2/3. I had pain and a lot of discomfort right off the bat, but it seemed to subside somewhat. I'm in week 3.5 right now and it hit me like a ton of bricks; the fatigue, the "sunburn," itchiness, sleeplessness, tightness in the armpit and nausea, it all hit me hard this week, but it's all more tolerable than chemo was, for me at least. My RO asked me yesterday if I wanted to lower my rads dose, I said no. I want this beast zapped to high hell (my apologies if I offend anyone with that expression).
You start Monday, correct?
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Sorry you got hit hard with SEs this week, Serendipity. I totally agree (and am NOT offended) with "hitting it to high hell". I have IBC and I really want those boosts on my scar... I want them to boost the hell out of it! As I understand it, we get one chance at radiation in a given area, so let's make it good. The good news is that you are getting close to the finish line, so hang tight, girl. Are you able to do any stretching to help the tightness? Ugh, I dread that... my mastectomy scar is already tight and uncomfortable and I'm hoping the rads won't make it worse.
Yep; Monday's the day!! I'm happy that my rads team has been able to schedule me most days between 10 a.m. and 1 p.m. so I won't be traveling in Houston's awful rush hour every day. I'm ready to get this show on the road!
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Hello all!
I had my radiation consult yesterday, simulation is scheduled for next Tuesday, then should start a week or so after. I’m going to try and wait till the 18th as I have a few appts already scheduled the week of the 11th. I will have 20 total sessions, with the last few being boosts.
Luckily the hospital that all of my appts are at is only about 5 miles away. The hardest part is going to be scheduling since I work 7:30-4:30 everyday and their latest appt is around 3/3:30.
I am nervous about all of it…the skin reactions, the fatigue, the discomfort in my arm (which is still so tight), but know that it needs to happen.
Glad to read the updates from those of you that have finished or are almost finished…great reminder that there is a light at the end of the tunnel!
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Today was the first day of treatment, was a little longer since they had to double check everything. Other than that, it was quick. I got the Calendula cream and will use aloe also. 29 treatments left!
Hope everyone is doing well with their treatments!
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Hello everyone! I've learned so much from this community since my diagnosis in August. Finally posting for the first time.
My simulation is scheduled for next week, and I'm a bit nervous, because I just started OT for cording. I can lift my arm straight over my head, but I can't fully extend my elbow. Raising my arm straight out to the side is really the biggest issue. I'm hoping one more week of OT and exercises will for sure get me where I need to be. I will be SOOO bummed if I can't have the simulation as scheduled due to ROM issues.
My lumpectomy was only on the 13th, so it makes sense that I still have a ways to go with healing. My RO wants to quickly go straight into treatment, and I'm definitely not against it. I have some commitments in December that I really want to keep, so finishing in November is ideal. But I also wonder if everyone is expecting a bit too much too soon from my body. My weekend plans are basically exercises and massage of the cords. We'll see what happens!
Hope everyone continues to do well with treatment!
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NatureYogi--woohoo!! One down! I hope it goes smoothly without bad SEs for you.
Maryoe--howdy and welcome. Sorry that you have to be here but you're in good company! I understand your concerns about range of motion; I was nervous about that, too. Thankfully mine has improved dramatically but I'm a lot farther out from surgery than you are. Just keep up the exercises a couple of times a day. The radiation techs can help support your arm and body if you need it; they were very gentle with me. Let us know how it goes and when your treatment starts.
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LW - thank you! Luckily tomorrow is Friday and I have the weekend off. I started PT in January because my ROM was so poor after my BMX. MY RO had me stop PT when I started rads so as not to allow for any shifting of tissue and screw up the areas needing to be radiated. I can't wait to get back and have some cording done. The armpit bothers me most as my breast is numb. My scar does not seem to have been affected so far; praying it stays that way.
Glad you were able to get appointments that keep you out of traffic. Who needs that on top of everything else! I had a sense of relief once I started. It's not fun, but at least something was finally being done.
Aklynna - I was very scared at first. I had a complete meltdown when I went in for my mapping session. For me, it was the anxiety and anticipation leading up to it. It was all so overwhelming and intimidating. Hoping you feel a bit more at ease after your simulation(I think you will).
NatureYogi - YAY for starting today! I'm glad it went well for you.
Maryoe - Sending you positive vibes that all goes well with your simulation. I agree with LW, keep up the daily stretches; it really does help.
I'll be here cheering you all on as we go through this together.
Have a great night!
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