Starting Radiation October 2021
Comments
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Thank you so much Serendipity for the tips. I am headed to Amazon now to get some of the film and cream.
I had weird tightening and sensation under my scar. It is my understanding that they can control dosing and are likely to deliver more radiation to that area as it is a common site of recurrence. So I guess it is understandable LW422.
And Serendipity it does give me comfort to read I am not the only person who is having these symptoms.
My techs had no advice for how to remove the stickers other than they will eventually fall off. So clearly they don't plan to help with any of that. Not slighting them, they have a huge patient load and the shifts are grueling. But I definitely do not want to wait for these things to fall off so will call the nurse to see what they suggest. No one has offered me anything in the way of creams or supplies except for a very strange gift of medical disposable panties. I was told I could cut the crotch out and wear them like a tube top. But why?? I never did figure that one out! The fabric did not feel at all nice on the skin so I didn't experiment.
One thing I did this whole time is I either arrived early and took a walk or took one right after treatment. There are some beautiful walking areas around this treatment center which I realize is not always the case, but the weather has been nice and it just put me into such a great frame of mind I am really happy I did it.
Today I went to a restaurant that has great Mediterranean food for lunch. It is the first time I have eaten a meal other than what I prepare myself in months. They had nice outdoor seating and I arrived early hoping to snag one of those tables. The hostess was pretty harried and wanted to stick me on a banquet inside within arms distance of people on either side. I might as well have asked to share a table with them. I don't know that I am immune compromised but I sure don't need a break through case of covid right now so I asked if I could sit elsewhere. She explained all the other tables were being held for "regulars." So I asked to sit at the bar. I was pretty cheerful about the whole thing, worst case would have been ordering take out, but I didn't feel exactly welcome. She was irritated with me and yet they had signs everywhere exhorting people to not spend excessive time at their tables and to stay masked when not eating etc. I told her I was receiving some medical treatments and needed to be cautious and happily took a seat at the (empty) bar. She must of felt bad because an outside table magically opened up and I had a really nice meal. That or she didn't want me giving them something. I didn't specify what I was being treated for
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Ruby - last one today!! HOORAY!
I'm so surprised that your RO's office didn't give you much of anything to help with the SE's. Mine was more than happy to supply me with whatever I needed and as much I need. The nurse told me from the beginning, "we are not stingy with any of these products." I was given a surgical bra that is the same material of those panties and I wear it as much as possible as it is not constricting and it's very lightweight, feels like I have nothing on, but holds the pads in place. You may change your mind next week when you don't want anything touching your skin.
My techs were great, very busy, but always took the time to answer my questions. If I had a spot I was concerned about they would take the time to look at it and recommend how to care for the area. A couple of times after my session was done they came to me and would look at something they noticed as I was laying on the table and would give me a head's up of a blister that may have been developing or something else. My RO/and his nurse saw me the last day of rads and had I had stickers/sharpie marks the nurse would've remove. I hope that is the case for you.
I always parked in the parking structure furthest from the center and never took the elevator. I would walk the campus to ensure I would get my steps in. I also would end of going grocery shopping or window shopping right after my appointment just to get some exercise. Last week I didn't do much as the fatigue was too much, this week I started talking short walks again.
I understand that restaurants are understaffed everywhere, but luckily I haven't encountered that issue with not being able to be seated safely/socially distanced or an "attitudy" staff. I'm glad she changed her tune with you. Honestly, I'm surprised that I haven't encountered it, but grateful. If I do go somewhere where I'm seated a little to close for my comfort, I explain that I have a medical condition and they very nicely move me elsewhere.
I hope today gives you some peace in knowing that this part is done and that you are able to relax over the weekend. I hope and pray that things start to get better, however, as I'm sure the RO"s office will tell, SE's could possibly continue. My advice is to slather your skin with the Aquaphor, drink A LOT of water, take it easy and try not to overdo things; be very gentle with yourself for at least the next week or two.
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It has been a bit surreal as far as the support for side effects or even basic questions. Techs answer no questions and defer to the doctor. The nurse refers to the doctor. And the doctor is super busy. I at least now know, thanks to you, Serendipity, why I was given the "panty hose" tube top. I am finished with treatments, thank goodness, but as I type this I can feel burning in my arm pit that I never had before. So I suspect I am not done with side effects. I have ordered the cream and the metipel knock off film you recommended. Am going to hit the road tomorrow so I can at least collapse in the comfort of my own house
.I am super grateful to have done as well as I have. I am also grateful to have had the opportunity to go to a top rated treatment center. Generally the staff and team are super supportive so it is odd to me that they are not forthcoming about side effects and how to manage or willing to even answer basic question like how do I remove the stickers?? I am going to call.
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Ruby - so glad you are done! So sorry you have to pull teeth to get answers though. Glad I could help somewhat. Sounds like your experience has been similar to mine and I am here for whatever questions to have.
I had the burning in the armpit, but it started the week before my last treatment and did not hurt me much as I really don't have much feeling. It may get worse before it gets better, but I pray it doesn't. The skin in my armpit became very dark, dry and rough and when it peeled it felt about an inch thick. I have all new skin coming in now.
Have a safe drive home.I'm sure it will feel so good to be home!
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Serendipity, you have been more than a little helpful. You have been very helpful!! As has everyone in the October group. The moral support was huge along with the shared experience, tips and advice. I am going to check back in to see how everyone is doing. I did call the nurse and first she said try alcohol pads. Then she said let me check, and the advice was vasoline and warm soapy water. So I will start with the latter. My MO called me tonight after clinic hours and sounded genuinely happy to hear that I had completed therapy and will begin hormone therapy (I am not sure that is what to call it, in my case it is Tamoxifen) in a month. I hope everyone has a good weekend, get plenty of rest.
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OMG, Ruby... ALCOHOL??? I'm glad you're going with the vaseline and warm soapy water!! Congrats on being done and have a safe trip home.
Y'all will appreciate this. Today's featured 'music to radiate by' was Johnny Cash singing "Ring of Fire." HAHAHAHAHAHA I was expecting next up to be "Burn Baby Burn."
My skin is beginning to look pink. ARGH. But at least I'm done with week 3... just 3 more to go!!
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Happy Saturday everyone! I am enjoying the 2 day 'break" from going to treatment. I am glad Serendipity and Ruby are done with treatment, pamper and spend this time for healing. You guys have been through so much!
LW422-The throat solution doesn't taste bad at all, cherry flavored. I took it for two days and throat all better. The solution lasts for two weeks and was $31.00, if I don't need it anymore, I am glad just having it on hand in case I need it again. He gave me refills also. Getting kind of itchy and more red, I keep using the Aloe Vera Gel and at night, calendula cream.
13 more treatments, I'll be done November 10, heading to mountains in North Carolina to celebrate and rest for a long weekend. Hope I am not too sore and burned up, told my husband that he might be doing all the driving!
Everyone enjoy the weekend, rest up and do something you really take pleasure in!
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While some of you are ending your treatments (Congrats!), my radiation therapy is finally starting, pretty late for surgery in early August. Covid-19 has caused backlogs in my small town. I had simulation and tattoo markers yesterday. I am getting hypo-fractionated radiation, the 16 treatments to start next Wednesday. I feel very fortunate to get the short sessions.
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Hi Pam! I hope that all goes well for you during your treatments. We're here if you need us. Keep us posted on how everything is going!
LW the music...to funny! Do you have 3 more weeks or 3 more treatments to go. Sorry, don't remember.
Nature - enjoy your ride up to the mountains, I bet it's beautiful this time of year. Glad your throat is feeling better.
Ruby - alcohol pads?! That's crazy! But glad to hear they told you to use vaseline instead.
Have a great Saturday!
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NatureYogi--thanks for the info. My throat thing only lasted a couple of days so hopefully it won't return. Glad to know the medicine isn't disgusting, though.
PamEP--we'll be here for you as long as it takes. I have about the same number of treatments REMAINING as you have, and I've been doing this for 3 weeks.
Serendipity--I have three WEEKS left. Ack. How are you feeling today?
Ruby--are you home yet? How are you doing?
Hope everyone is having a nice weekend.
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LW - Hi! Hope you are enjoying this weekend and the break from rads. 3 weeks done, 3 to go! You've got this! I'm here with you and the rest of you til the end.
I'm getting better everyday. Decided to go grocery shopping and to a local Harvest Festival not too far from home, just to look around. Got home and I'm exhausted. I keep pushing myself past my limit.
Yesterday and today I have what feel s like an "electrical storm" in my breast, those zings are vey bothersome and at times painful for me.
Skin is on the med, the chest area and now moving more into the breast is starting to pink up. Everywhere else is still red and underneath still feels raw, but not as bad, thank God. I think I'm past the worst of it.
Ruby - hope you made it home ok and are relaxing.
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Hello everyone! How are you doing? Today I started Week 3 and I hope these remaining 3 will go by as fast as the first ones did. I'm still feeling pretty good... no significant SEs thankfully. I haven't had the "lump in the throat" thing anymore and I hope it doesn't return.
My appointment today was for 11 a.m., but I woke up about 8 with an upset stomach. I was so bummed; I didn't want to miss a treatment but I couldn't get too far from the bathroom and an hour in the car was out of the question. So I called and got rescheduled for 4:30 this afternoon, hoping I'd feel good enough by then. Well, I made it so woo hoo!! I am determined to get this done and over with.
Serendipity--I hope you have turned that corner and are on your way to feeling good again.
Ruby--how are you and did you get home safely? Check in when you can.
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LW - so happy that you didn't miss your appointment. I was the same way; there was nothing that was going to make me miss any appointments. I had upset stomach 2-3x a week throughout rads and once I thought I would have to miss it, Thank God I did not!
I pray that you continue to get through with no serious SE's.
I think I've turned the corner; skin is healing. I have small bright red spots all over the breast where the new skin is starting to come in. I'm super itchy, but doing everything I can to not scratch, my weapon of choice is Aquaphor. I'm peeling something fierce. Under my breast feels so much better, which was the worst part for me, as you all very well know. I'm still getting the electric twinges, but not as bad as thy were Saturday.
I actually have a sense of relief as I know that I'm finally on the other side of this.
Ruby - hope you're feeling ok!
Keeping you all in my thoughts and prayers.
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Hi Everyone. I re-read all the posts in this thread. Serendipity, I followed your skin burns. Yeow! You have given a lot of good advice. I am glad to hear that you have turned the corner and are out the door and on the mend. NatureYogi and LW422: What is with the throat and swallowing issues? Are these typical SE's?
My first rads session is tomorrow afternoon. I read Esther01's early posts, which were helpful re creams and maybe about showering. Is there anything I should do to prepare before and after the session? Shower or no shower; moisturize the breast area or no; apply some sort of cream or aloe vera gel after each session or wait until there is some sort of side effect?
I practice yoga almost daily and will be going to the radiation clinic afterwards. I thought I would shower after my practice, but now I wonder if it is not a good idea.
I look forward to ending this SOC procedure, like some of you have done, and getting back to my life with as little damage as possible. Thanks!
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Hi Pam! Wishing you the best tomorrow and throughout rads. I hope you have no SE's and if you do, may they be minimal.
I learned quite a bit from Esther in the August group while she was going through rads. She was so helpful, all of the ladies were.
I was moisturizing more then usual leading up to starting rads.. My RO gave me Miaderm, which contains Calendula, at my first visit with him (3rd session). I applied it liberally right after every single treatment, once in the afternoon and right before bed from that day forward. I switched to BeeCure (Amazon) when I ran out of Miaderm, after having finished rads. I started using Aloe Vera at that point too, but my RO did not want me using it; other RO's are ok with it.
As far showering, it's going to be a personal choice. If you choose to shower right before I would say to not use soap in the area in which you are getting treatment, but you can ask your tech about that tomorrow.
Drink A LOT of water to keep your skin supple.
My best friends throughout treatment were Miaderm (Calendula) and water. After rads, and still, Aquaphor and water.
Keep us posted as to how it goes.
Sending warm thoughts and much love!
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Hey Pam. Yes, I believe the "lump in the throat" sensation is fairly common for those of us having supraclavicle nodes radiated (base of neck). I had the sensation for a couple of days but it wasn't painful or too bothersome. Just noticeable when I swallowed.
You'll do great with the treatments; usually the techs are very kind and helpful. I shower every day because that is one thing I look forward to. My RO never suggested any cream at all unless I was having discomfort, but she gave me a tube of stuff so I use it once a day after my shower (at night). I imagine your RO will advise you about what they recommend and will likely provide it for you.
Good luck tomorrow!
Serendipity--so happy to hear that you're doing better. Hugs!
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Hi everyone--
Welcome Pam EP. I had a 3 week hypofractionated course and knock on wood, tolerated it pretty well. Just finished last Friday. Like you I felt fortunate to have the shorter course. But the dose is higher on a daily basis so be sure to take good care of your skin.
Nature Yogi, those weekend breaks are a huge blessing. I used them for serious rest and recuperation and I think that made a big difference. I have a tendency to want to get everything done right away and basically gave myself permission to concentrate solely on my health.
LW422--let's hope the music is not reflective of what is to come!!
Serendipity--I ordered and got the BeeCure cream today. It is marvelous!! It is so creamy and smells wonderful. I put some on tonight and it is truly soothing. I have also read that Manuka honey has wound healing properties and am thinking of getting some of that as well. But I am thrilled with BeeCure
I got home late Saturday. Spent a day unpacking and then yesterday was back in the thick of things. I saw my PT today for the first time since all this started. My chest muscles and skin feel really tight and I am worried I will end up with restricted motion in my shoulder. I am doing stretches, but like Serendipity am having some weird sensations (can relate to the description of electrical storms) and also some pins and needles feeling in the hand on my affected side. I also can't quite turn my head the way I could prior to therapy, and I have an area of my rib cage that was not even in the treatment field that is swollen and tender. When I do stretches I feel like I am causing micro tears if that makes any sense and am irritating things, so am hesitant to get very aggressive. She wants me to treat the rads dermatitis first, and we are going to start next week. Says she can't manipulate the chest wall muscles until the blisters subside. She also, to my surprise, encouraged me to wear a prothesis for at least part of the day once healed. Said if I am not going to have a bilateral mastectomy that I am going to throw myself off balance and it will affect my back muscles. I think there is some truth in that because I do feel sort of off center. I was a 34 C, so not hugely endowed, but thanks to Covid pounds am a 36 D! I have been using a lightweight poof just to fill out my bra. I wasn't even going to get fitted for a prosthesis but went ahead and did it before I started rads so I could still wear my dressier clothes. I am glad I did, because they have come light years from what was on offer back in the day (like for my mom) plus the bras were actually quite pretty--they are regular lingerie with pockets sewn in by alterations. With the bra and prothesis, no one can tell I have had surgery-even undressed. And insurance is picking up the bill. The PT thought I was doing super well given the two surgeries and other bodily insults I have endured, so that was a boost. I don't know if anyone is experiencing any issues with their shoulder, but if so, I really recommend seeing a PT. My situation was compounded by the mastectomy, but radiation alone can sometimes affect range of motion. My PT is not a lymphedema expert, but I don't have that issue. I only had two nodes removed for biopsy. But I think this will help me avoid any fibrosis and restrictions.
Best to all!
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LW - thank you! It's a big relief for me.
Ruby - I'm glad you like the BeeCure. I love it! If you decide to get the Manuka homey let us know how it works.
I hope things heal quickly for you and that you can get going with PT. I'm struggling with my ROM, but I never had it back to 100% after my BMX. It was better than what it is now, I feel like I'm back where I was a year ago. Like you, my chest and skin are very tight along with my underarm. My biceps are really bothering me too, but on both sides. I had this last year after my BMX too. I know what you mean about the micro tears as that is happening to me, but on the lower part of my breast. I haven't been given the all clear for PT. My RO wants to see me on 11/15 and then clear me. That seems like a long ways. He says that internally things became very inflamed and need time to heal before starting any type of stretching and cording. I will start massages tomorrow as I need some type of relief in my neck, shoulder and arms.
Pam - hope all goes well today!
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PamEP--I was told to shower daily and to let warm soapy water run over the area. No scrubbing, gently pat or blot dry. I would then moisturize because the pores are open after a shower and it felt good. Moisturize at least twice a day. I used Aloe with no alcohol during the day because it wasn't greasy and I could discretely apply under my shirt without staining. I used Eucerin and Aquaphor before retiring at night. I also began using OTC cortisone cream at the very end to manage some itchy dermatitis and I applied neosporin to a couple of bumps that were getting infected. I was very fortunate, and even though I had bolus treatments where the effect is intended to intensify in the skin, I have mostly emerged unscathed. At Serendipity's suggestion I got BeeCure radiation therapy cream and have to admit it calmed the inflamed bumpy area on my chest right down. Honey is also a natural antibiotic and has been used in wound care for a zillion years. My RO said that the dermatitis is best helped by keeping the area moist. They didn't recommend any films over that area because they didn't feel I needed them, but I bought the equivalent of Mepitel anyway. But I would not wait until I had dermatitis to apply moisturizers. I did apply stuff to my skin before and after treatments--at least three hours ahead of time. I think the admonition not to do that is so that techs are not dealing with greasy chests and breasts, not because it interferes in any way. The RO didn't think it was an issue. BUT that advice was for me so always best to check it out with your treatment team.
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Rubytoos: Thank you for the advice. For now, or until my RO and techs advise otherwise, I will shower sometime before my treatments and apply a light moisturizer like aloe vera gel, and then I was thinking of calendula cream right after the treatment. I hope not to need Aquaphor, but I know about it. Mepitel is new to me. I will ask the staff about radiation dermatitis and other SE's. I am hoping, like you, to emerge mostly unscathed, given the shorter treatment period.
Thank you for the send off, Serendipity. Love your name, btw.
I appreciate all the caring input.
Pam
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As far as creams and lotions, I'd just go with what the RO recommends. I was talking to another patient in the waiting area today and she asked what my doctor recommended; I told her "nothing." She was relieved because her RO also recommended that she not use any creams unless she was having some discomfort. Apparently the MD Anderson radiation docs are not advocating use of creams unless they are needed for soothing.
I'm still not having any skin issues (thank goodness) and I've not been using anything; I had my 18th treatment today. (12 to go... woohoo!!)
Hope everyone is having a good week. Thinking of you today, Pam!!
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I forgot to add that I got an order for PT and will be going in for a consultation. Not sure if they will perform any actual PT until I'm done with rads, though.
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I just returned from my first session. The doc is a Richard Dreyfuss doppelganger without being funny or ironic.
So, he gave me a couple of sheets (no samples) re Aloe Vera Gel and Calendula Cream and said to apply 2-3x per day. I already have the aloe vera and stopped on my way home to get Boiron Calendula Cream (hey Esther01!) at my local Walgreens. The customer rep stayed with me for quite some time to find it.
LW422, your comment about doing nothing if no SE's are manifest was interesting. Since you have had no skin adverse effects, maybe you are doing what we should all be doing. My RO said that I would have adverse skin reaction.
I felt the first treatment slightly. The whole thing was other-worldly. I am looking forward to the last.
Love to you all.
Pam
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Glad your first treatment went OK, Pam. I imagine I will have skin effects before all is said and done. I just hope it isn't too awful since I'm still whiney about tightness and nerve pain from my mastectomy. I just want to feel NORMAL again and I wonder if that's ever going to happen. (I'm feeling kind of low tonight.)
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LW - I hope the skin SE's stay away for you! Wish I would've been so blessed, but I am gratefun that it is over and muy skin is healing so well. Skin is still red in some areas, couple of raw patches and some peeling is all I have right now. I'm sorry you are feeling low tonight and it's understandable, you are entitled. I hope tomorrow is better for you.
I pleaded with the RO today via email to see if I could get in to PT and he said no. I really need it. I'm concerned that if I don't get some cording done soon I'm going to be have very restricted ROM permanently. I guess I need to trust what he's doing. SIGH
Pam - funny you say your RO looks like Richard Dreyfuss; my RO looks like George Clooney. It was an ongoing conversation in the August thread.
Glad your session went well today. My RO told me from the beginning I was going to have skin issues and he was right, that is why I was very consistent with my creams.
Hope you all have a restful night!
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Hello all, 10 more to go! I am super red and a little itchy, but the throat thing went away. Tech said that the RO may back off with using the bolus every time, I hope so because I was pretty miserable at work today! The Boiron Calendula cream helps at night, I am still using Aloe several times during the day. Hope everyone continues to do well. I figure I can do 2 more this week, get a weekend break, do 5 more, beak then the last 3. Whew!
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At least my hair is coming back in fast....and curly!
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Nature - you've got this! Keep applying the calendula to that area that is getting itchy.
So you have 11 session left?
YaY to the hair coming in!!!
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Hey y'all. Hope everyone is feeling OK. I got scheduled for PT tomorrow after my rads treatment. I'm having so much tightness and under-arm swelling since my mastectomy that I'm really getting beat down from it. I never expected that unpleasantness to last this long (9 weeks since surgery.)
After tomorrow I'll only have TWO WEEKS of rads to go!!! So happy about that.
Nature-Yogi--I'm getting my hair back, too. I'm thrilled to have some fluff and not see my shiny scalp any longer!!
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Ruby - someone in the August thread posted today that she is using Manuka and that it is very soothing and that it even helps with pain. I wish I would've known about it before, but just might buy some.
LW - WOOHOOO about the hair and two weeks to go! I hope PT helps. I know exactly what you are going through. I had a massage at the cancer clinic today and the nurse would not go anywhere near where I had rads or the exit point, which is my shoulder blade, which is very tense. I started crying when she told me she couldn't touch the area. I've been going to her since March and she cried with me lol (we've become friends) . Nonetheless, she did my arms (not the underside of the radiated side), top of shoulders and neck and it felt wonderful. My neuropathy has been pretty aggressive as of late and she did ny hands and feet too. She was the one who helped me get most of my ROM back along with PT.
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