June 2020 radiation group
Comments
-
I start this week, after an extremely protracted wait between chemo and surgery. Has anyone had IMRT, with no visible cancer left (wish no visible meant none forever lol). Everyone says there’s little side fx but after chemo and surgery and extensive tissue necrosis, I don’t believe them! Haha
0 -
How did it go? I had my 10:15am appointment, was out by 11am. They said tomorrow will go much quicker, 9:30am daily. My fiance/boyfriend(I broke up engagement last year, gave ring back, then we got back together haha) was in the car waiting. He claims he'll take me daily-sweetie! The doc saw me-my breast is red and tender and incision is pink. She said all looks ok. The actual was ok-I had my eyes screwed shut. The techs were very kind. The mask I tried to forget about during!
I swear I am DRAINED. I am sleeping horribly thought but body feels a bit funked. Laundry and easy dinner of ribs and baked potatoes. Otherwise, lying low, drinking water lots, and ordered some Lilly Pulitzer as a reward for surviving this far lol.
I am seeing an integrative oncologist tomorrow, so must compile much information regarding supplements, nutrition, etc. AND, my son's travel baseball team just called a tournament for this weekend. I have a 25 year old son who's going to help.
Twenty never seemed like such a big number but I wrote every treatment in my calendar-19 to go. Big (((hugs))) to you, sweetie. Let me know how you are and how things went. I haven't had my daily cry yet. I'm much more emotionally charged, and drained, than I was before my surgery....strange....
xx
0 -
Did anyone else have some pain, soreness, and tenderness after the first treatment? I wasn't expecting this AT ALL!! I noticed leaving that I was slightly tender....it has gotten worse as the afternoon as worn on and now my breast is starting to feel heavy and definitely more sore.
Another question.....I actually "felt" the radiation hitting my skin. I could "feel" the beams and what it was doing to my body. That seemed weird to. Did anyone else?
I wasn't expecting either of these things.........esp pain on the first day!
0 -
toria1212. I just posted asking some questions....please read it and let me know how if either of those things were what you have dealt with. I'm glad your first time was positive. Mine was too (except for those things I mentioned in the post above). Everyone was so nice. They did the simulation first and then my first dose of radiation. Like you, they said tomorrow would go much faster. After tomorrow I have morning appointments to. I'm marking the days off on the calendar they gave me with all my appointments and dates. July 8th I will be done (you too I assume). Yes, 20 has never been such a big number. Now we are in the teens though.
It is nice your fiance can take you every day. My husband works a lot so I will go myself, but that is actually the way I prefer it. I need time to think and just gather my thoughts after these appointments. I cried again today as they moved the beam closer to me. The techs were so kind and understanding. They even played Elton John for me during the long period of time they were out of the room. Yes, I hear you on being wiped out. I feel like you do, just absolutely drained. I know mine is more mental at this point, but man, this is exhausting.
Have fun this weekend!! I hope you can rest up and feel good for it.
Please let us know how the appointment tomorrow goes. I would love to hear your experience with an integrative oncologist.
0 -
Ohthatcat I’m not sure if I’m getting IMRT or standard external beam radiation treatment. I’ll have to ask my RO. I don’t have any visible cancer since my BMX, but they found microscopic cancer cells in the breast and lymph tissue that they removed. I struggled with the decision to do radiation. ROs downplay SEs and no one seems to value long term quality of life over trying to get to NED. It looks like you joined the forum when I did. I was diagnosed in the Spring of last year and it has been a long road so far as well.
toria1212, I echo your comment about being drained! Work has been hard for me this week.
cm2020 I can’t feel the radiation when I am on the table. But, yes, I felt sore from the very first day—not so much that I needed a painkiller or that I was using lots of lotion, but definitely more sore on the right versus my non-radiated left side. I do feel occasional jolts of pain both on and off the table related to my nerves healing after the surgery
0 -
BCat40
After reading about the film you are using, I discussed it with my RO. We decided I’d be her “guinea pig” for Mepitel film. TEs were placed during MX on May 1. But Reconstruction has been interrupted by high margins and a positive Sentinel Node. I’m 70 this year and other health issues make it unlikely I can do any flap surgery.
Anyway, I had the Simulation done on June 5 and my first RX on June 8. I tried to wear the Mepitel Film over the weekend and that didn’t work. Both sides of the film are tacky to the touch and just bunched up everywhere. The Technicians decided it was just easier to remove/replace them for each Treatment.
I’m not really certain we are using the same material you are. This is kind of gelatinous. Not like Saran wrap. These are thicker and squishy. At any rate even with the film in place, I’m sore after each Rx. I’m blaming the tugging and stretching of the MX scar and the area of the node removal.
I’m really glad you posted about the product. I think using it will give me a fighting chance at Reconstruction
0 -
Sorry to hear that you feel sore-my breast is still recovering from surgery, and last weekend I played tennis twice(way overdid it and my breast became sore, heavy and tender. Have you tried gently massaging your breast, not aggressive AT ALL, but gently all around? My incision is at 6pm and it is quite tender, but I am massaging my breast whenever I think of it.
It's so funny you mention Elton John-I live outside of Detroit(from Pittsburgh originally) and Journey came on, Steve Perry singing, " Just a small town girl, born and raised in south Detroit, she took the midnight train going anywhere" and I thought, "ARE there trains in south Detroit?" So I was analyzing the lyrics during my treatment lol.....80's music forever, hm?
My eyes were squinched tight, and I saw bright light a couple of times but I did not dare open them. You are braver than me to "look"!
I want to compile lots of questions for the Dr. but I am worn out mentally-sometimes I don't 'attack' the bc stuff til I am in pjs and sitting in my bed, 11pm....
I hope your treatment tomorrow goes well! I will be praying for you(and me, and others) so know that you are in my thoughts, sweetie
0 -
Mac5, the stuff is a little tricky to get on but should not be like you describe. This is what you should be using:
https://www.cvs.com/shop/cvs-health-mepitel-film-transparent-film-dressing-3-ct-prodid-2000044
And this shows how it is applied:
https://www.molnlycke.ca/our-knowledge/mepitel-film---radiotherapy-breast-application/
The stuff through the CVS link is the exact product shown in the demonstration photos. You must have that exact product.
Also, the point is to have it on 24/7 and only patch up areas that peel off naturally, which for me happens every few days. You should not be reapplying it for every treatment.
0 -
cyathea. Okay, I do feel better that I am not the only one that is sore on day one. It has gotten progressively more sore and more heavy since I left this afternoon. Like you, I don't need any pain meds or anything, but I am uncomfortable. I have applied aloe vera twice.
toria1212. Oh, I had my eyes shut tight for at least 99% of the time! They made me look as they were showing me everything and that is when I started crying. But when they left me alone, my eyes were squeezed every bit as tight as I am sure yours were. I love that you were analyzing lyrics during treatment! Music is such a wonderful thing and very much a therapy.....I hope they have it every day when I go. I get what you mean about being just so worn out. Ever since leaving today something has changed in me. I thought I was feeling good, but I think it is all just catching up with me, and I am now as physically tired as I am mentally. I feel like I could sleep for a month right now (and I am going to bed very soon as a result). Thank you for the prayers and support......I am sending everyone good healing wishes and so many gentle hugs.
0 -
Ladies who are having pain, definitely speak up to the doctor. I complained about my pain and the RO then decided to tell me I have a large seroma. I emailed BS and she told me to come in and get it drained. Hoping that will mitigate the pain through the end of rads.
0 -
Finished my 4th treatment today. 21 left to go. I'm claustrophobic, but the radiation therapists let me pull my mask down during treatment so I can breathe. They're all wearing N95 masks. I started putting lotion on the treatment area a week before. My acupuncturist also gave me recipe that's 1/4 cup oatmeal, 1 tsp of calendula cream, and 1 tsp of arnica cream that I've been using also. My RO answers all of my questions and will do research if I bring up something that he's unfamiliar with.
I struggled last week when they took the x-rays. It was hard to stay still with my arms raised overhead for so long, but the treatments have gone by quickly.
0 -
BCat40. Thank you for letting me know! I see my RO today (i see him once a week during radiation...is this typical or is he just really on top of things?) and will let him know. This morning the pain is MUCH better. I am a bit tender but nothing like yesterday.
grdngrl505. I have horrible claustrophobia as well. For both the mapping and the simulation (which was also a treatment after the simulation) they let me pull down my mask once they got face shields. I think they felt bad because I immediately start hyperventilating and crying as soon as I lie down and see the machines so close to me. But they let me know loud and clear that for the regular treatments they wouldn't be able to let me. My deep hope is that because the regular treatments are so short it won't be a problem. But oh I feel your pain with it....it is awful isn't it? Thanks for the recipe. Where do you get arnica cream?
0 -
cm, glad the pain is better. I think it’s standard for your RO to meet with you once a week during treatment. That’s what mine does. I actually wonder what they are off doing the rest of the week as it seems they’re only in the clinic checking patients once a week.
0 -
BCat40. You know I just realized today that my RO is only there on Thursdays. What is up with that? I didn't know it was all of them. So weird. I am not nearly as sore/tender/heavy feeling today as I was yesterday. I like that he will see me once a week in case anything comes up. But man I will be happy when this is over. 2 down 18 to go.
0 -
cm, I hope your regular treatments are short and go quickly.
I get the arnica cream at Sprouts, but you can find it at any natural food store. Make sure you get the cream and not the gel. The oatmeal also needs to be cooked. I make a triple batch and store it in the fridge. My acupuncturist advised to wait two hours before applying and leave on for four hours. I use at room temperature. I have a hard time leaving it on for four hours, too and my skin is a little pinkish after I wash it off. Hope it works for you, if you try it. Even at room temp, it has a cooling effect on my skin.
0 -
My day 2 of radiation: Dr's office called at 7:50am and said there was a power outage(we had big storms here yesterday in Michy-over 335K without power, not my immediate area though) and appointment for 9:30am may be delayed. OK. (I started cleaning) Then I called them at 10am to see what/if anything was up, left a message. At 10:50am, nurse called to say all was cancelled for the day. (I kept cleaning) At 11:10am, nurse called to ask me to come at 1:15pm. (I was still cleaning)
UGH-my emotions are sooo in overload lately, so the jolt in the schedule, well, I am just a puddle of anxiety and tears lately. Also my breast was weeping a tiny bit onto my sports bra. At my appointment, I mentioned it to tech #1-she was not too kind(like WHY?) Then tech #2 was very sweet and said Dr would see me after treatment. As I laid down, and she was rolling me back(towards machine), and that's when I SHUT my eyes for dear life, she says, "Oh and there's no music today due to the power outage." UGH. I said, "How long will this be?" She said, "Five minutes". I started to pray.....
Honestly, it felt like less than five minutes. I was SOOOO happy, relieved and praising God. Then waited to see doc, who took a pic and forwarded it to my breast surgeon. Later in the day, my RO called and said antibiotic was called in. My breast is pink(was pink before radiation began). Of course, I am worried and not thrilled. My nipple is soooo tender-anyone else? I put Bactroban ointment on the incision and aloe vera all over. I am praying all stays ok.
Is it 'normal' to feel so emotional? i was much better before surgery-I had this. I was mighty. No worries. I had already conquered it all in my mind. Now, I can't stop thinking about what I must do to be healthy and cancer free.
@grdngrl505 I will look at the arnica cream as well. We have a really nice natural vitamin etc market in our town. I just don't know if it's opened up again yet. Yay on four treatments down! You'll make it to the finish line before me
My mask caused less stress today, but my session seemed so short that I tried my best not to focus on that claustrophic feeling it gives me. (((hugs)))@cm2020 (((Hugs))) for day two!! I am thankful my appointment today was not cancelled. 18 to go! I need a week on a beach....
I have my integrative oncologist appointment on Saturday. I will update, hoping she listens and provides good information. I am researching like mad....(related to the AI)
Love to all xx
0 -
grdngrl505 Thank you! We have Whole Foods and they should have it. There is a sprouts about 30 min from me...I SO wish we had one in my town. I love that store so much.
toria1212 It is really surprising to me how fast the treatments are. The music does make a world of difference though. I'm sorry about the breast infection (?). Hopefully the med will clear it up quickly. My nipple was extra tender/hurt the first day, but my whole breast was feeling the same day, it has been better since. I do hope the antibiotic kicks in quickly.
0 -
I start radiation today. I am doing IMRT. Has anyone else had this? I keep getting conflicting messages about side fx. I’m nervous only because I had a horrible experience with chemo to the point I declined the last four tx, ended up with advanced tissue necrosis after my BM and had a 6 month delayed healing process, am having issues with Lupron lol....I just want some real-world perspectives! Hahah
0 -
ohthatcat, sorry you have had so many difficulties so far! I think most of us are doing IMRT these days--it basically means there are little metal leaves inside the glass on the radiation machine that move around and affect the specific dose of radiation going to a specific location. So basically whatever general side effects you hear about here may occur (skin redness and peeling, fatigue).
Here's a video showing how it works:
0 -
Here’s my “2-weeks done/2 to go “ report: in short, all is good.
My skin is red and my nipple is darker. With aloe and CamWell, the SEs are still very manageable.
My throat is still sore and I have that “lump in the throat” feeling, but nothing has progressed to be worse than it was the first week.
The fatigue continues. Getting up at 6 AM is hard but I can do it. Working in the afternoon is very hard. Some days I can and some days I just have to rest.
I’m thrilled to be half way done! 🙂 (((hugs))) to everyone continuing the journey.
0 -
Ohthatcat. You have a rough time of it. I am so sorry. I do hope radiation comes a bit easier than everything else has.
cyathea. I really appreciate the 2 week report. At what point did you notice the fatigue? I'm so glad your other SE have been manageable and not gotten too bad. Congratulations on being 1/2 way through!!!! I mark off the days on the calendar my radiation office gave me as soon as I get home each day. 3 down 17 to go. Please do keep updating as you go through the next 2 weeks, I find it helpful to have an idea of what is to come.
0 -
Happy Friday,
Finished 6 of 25 today. Feeling a little fatigued today. I had a conference call at 4:30 and could barely keep my eyes open.
cyathea, thanks for sharing that you started feeling more tired on treatment 7.
toria1212, hope today was less stressful for you. I've been feeling emotional, too. I've been using a meditation app that helps a lot, but sometimes I'm ready for all of the treatment to be done. Also, trying to figure out what I need to do to be cancer-free. Kristi Funk mentioned in her book, Breasts: The Owner's Manual to go on a plant based diet. I've been trying to incorporate more fruits and vegetables in my diet and eat less meat. I'm more successful some weeks than others.
BCat40, thanks for sharing the video. It was helpful to watch.
What's everyone using to protect your skin from radiation? I was given samples of Aloe Vesta, Miaderm, Aquaphor, and Eucerin by the oncology nurse. Using Aloe Vesta on my back. Oatmeal with arnica and calendula creams 1x daily, Miaderm 2x daily, calendula cream 1x daily. The radiation therapist mentioned that I should be applying lotion to my back as often as I do to my breasts, but haven't been.
Hope everyone has a good weekend!
0 -
I know how you feel. I completed (well actually quit before I was finished, I had 4 whole breast radiations left and 4 of the boost/targeted ones) radiation in late March and am still struggling with it all. I wake up having nightmares, dreaming I'm on the table, up in the air and exposed. I do not care for my RO and have not since my very first appointment with him when he pulled up someone else's chart (as I immediately told him that was not mychart, her face was in the corner) and he told me he knew, but she had a similar situation that I did on my right side. Second appointment did not go any better, cried through it all, simulation was the single largest moment of humiliation in my life. I struggled through radiation and had it not been the kindness of one of the techs I think I would have gone mad. I had a panic attack the day of my simulation as I was heaving and crying while laying on the table with the RO, two techs and two flunkies following the RO. He asked "what was wrong" and I said to him "why don't you jump up here, pull down your pants, lets all take a good long look at your penis, take photos of it, discuss it, draw on it with a sharpie and oh it is very tender and hyper sensitive and let me know how that works for you." He left the room without saying a word. I still have to see this man in August at my 3 month follow up and I dread it. I have visited with a patient advocate and I have told him I will go do the testing ordered this one time then I will see the "world renowned" RO and (I will not be undressing) let him tell me how brilliant he is and how this all worked and then we shall be done. I go to MDAnderson, best cancer hospital in the world, and have a great team except for this one man.
I also am claustrophobic and the day of my Breast MRI (I was being fully sedated and knew it) my BP was 234/132. I was so freaked out, but I had the kindest nurse who sat with me and just talked to me for about 30 minutes till my BP was down to the 180's where we could continue.
I did request no male techs in radiation and that was honored. One day there was one young man and I asked he leave and he did.
0 -
grdngrl505. I can't imagine how hard it was to get through that conference call when you were so tired. Will you have the option of going home in the afternoons until radiation is over? You are doing much more for your skin than I am. Makes me think I am doing something. wrong. I am only using aloe vera and calendula cream...using each once a day since my skin is fine, so far. Did they tell you why to put it on your back too? This is the first I have heard of it, but if I need to I will.
JDB1965. I am so sorry you have had such a hard time with radiation and your RO. I am not thrilled with mine...but he is nice and smart. I can't quite put my finger on what bugs me about him. I think it is that he is just probably not as good bedside as he is with figuring out radiation stuff behind the scenes. It makes me glad I just see him for radiation and not ongoing treatment like my MO. But he is good at what he does and is nice. So I am not complaining. But when I hear stories like yours it really bothers me, and makes me both sad and mad (smad), because everyone should be treated well and made to be as comfortable as possible through this and (most important) get excellent medical care. Lots of hugs to you.
toria1212...How did your appointments go? How is your breast today?
0 -
@JDB1965 I want to cry from reading your post. Oh, sweetie, I have never been so emotional. A veritable crybaby, and I come home from my 9:30am treatment, and I wear my hair up on top of my head like Pebbles Flintstone(sans the bone) so that I can lay flat on the table, and I bought these loose fitting tops from Kohl's and I kinda look 4 months pregnant, and ugh, I am a mess. I'm so sorry you have suffered. I have three down, and my best friend (wealthy, husband, cleaning lady, never cooks, no children) texted me yesterday, "Seventeen to go! Moving right along" and I wanted to SCREAMMMMMMMMM. So insensitive(at least her remarks have been, she has made other ones that aren't that empathic, imo)
@grdngrl505 I will look into the book. I find that without proteins(chicken, cheese) I am always starving. I am doing pretty well cutting sugar way back and trying to do the intermittent fasting, but today I have a 3pm zoom with the integrative oncologist, and then fiance and I are getting dinner and eating on his deck(I have 3 kids at home) and I don't like his house(bachelor pad, dark energy from his ex-wife), but we can have some 'alone' time. I am dressing up lol
@Ohthatcat Hi there and I hope your treatments go well for you. I'm so sorry about the struggles with chemo. I cannot imagine and am grateful that I did not have it. You are brave!
@cyathea Last night I had terrible gerd for a bit. I already take Nexium but my daughter brought me a tums. I sleep upright-ish(with a wedge and pillows) anyway. Have you tried sleeping more upright? And not drinking anything acidic before bed? Just thinking of ideas to help....
@cm2020 The one tech is totally PRESH, love her. The other kinda b*tchy(why?) but it was soooo quick! If I ever write a book about this bc experience, I am going to title it "Two Songs", because that is how long it took to lie down and have the treatment, start to finish. I was soooo grateful. My breast is still leaking a wee bit, Dr saw me(two days in a row, and I am grateful), and said no tennis, no big, bouncy activities lol. Trying to walk in the glorious weather here in Michy but darn it, I BOUNCE! lol I 'air' my breast out late at night, when house is settled down and kids are in their rooms, for up to an hour. Nothing like fresh air to help heal. I am always tightly wound now-relaxing seems a far off thing. I pray often, and I am drinking more water than ever(I have a very weak bladder, had bladder mesh surgery several years ago) so even drinking water all day is a bit of a pain.
I remain emotional and drained. I pray for all of us, everyday, and hope everyone here has a blessed and lovely weekend. We are having a bonfire tonight and my 4 year old granddaughter will run amok. The simple things. I am blessed.
(((Hugs))) to all xx
0 -
Toria1212...You are right...it is two songs and done! Except x-ray days. Twice a week they take x-rays and then it is longer. Not horrible though...maybe a total of 15 min I guess. I'm glad the dr saw you and gave you guidelines. Yes, I hear you on being emotional and drained. This week felt like 6 months long.........I thought it would never end!
I am vegan and follow whole food plant based diet 99% of the time. I drink a ton of water. I also intermittent fast. I am trying SO hard to lose weight. For 2 weeks now I have been good about working out 4 times a week.
0 -
I was in Houston two weeks ago for some appointments, but do not see my lovely RO until August. Today I have what I think are some effects of radiation lingering, tingling and hyper sensitivity or deadness on right nipple that sometimes feels like a shock going through my nipple and traveling down my arm and leaving my hands and fingers tingling. I have some pain on my right side that sometimes is a low to midgrade ache that is constant and sometimes it is throbbing. As I understand it that can happen sometimes and hopefully it gets better.
0
