January 2018 RADS group
Comments
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sorry vl22 it stinks that you had one plan in your mind and now have to absorb a new one
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VL22, so sorry to hear that ... I would have reacted the exact same way.
Finished 4/30 today. Had some prickly skin last night and saw the nurse today. She said avoid scratching, and if I can't, use hydrocortisone (they gave me a tube). We chatted a bit about how "everyone else" is using lotions and potions, but she reinforced keeping it clean and dry and using the hyrdrocortisone as a last resort/sparingly.
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VL22, Sorry for your disappointment. Hopefully, these weeks will pass by so quickly for you and you can endure.
4/33 today. It will feel good to finish a whole week and have the weekend break. Jen, we are on same day schedule, but it looks like you will end before me. I think it was no more than 3 minutes today. And, 3 technicians were in there, about to walk out, and I asked, "Don't I need to turn my head to the left? They all looked at the screen and said, "Yes." Wow. Glad I thought of that. Also, I suggested politely that they get gowns that are easier to deal with. I asked if most of their radiation patients had BC, of which they agreed. I then said most of us have had surgery(ies) and have a hard time making the arm work to tie the thing, so velcro or snaps might be helpful. "Great idea," the only guy said. My neuropathy from chemo is doing lots better, but it's still not 100% gone in my fingertips, thus making it a challenge to even put on my necklaces still. That's my vent for the day.
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When I received my tour of the treatment center, the technician told me that they had received numerous complaints from patients about using hospital gowns. So they got approval and ordered soft, plushy robes like the health spas have. Patients wear the same robe Monday-Friday and leave it on Friday after treatment for laundering over the weekend. It is a kind, respectful touch to an otherwise impersonal experience.
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Hershey Kiss, Plushy robes, fabulous!
I also turn my head slightly but when I was mapped they made an upper body mold of me that I would lay in each time and so my head fit in the same slightly turned position each time. Made lining me up take only a few seconds.
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Hershey, THAT is an AMAZING idea. I can only imagine how much this is costing my insurance (no bills yet), and I think that is a fabulous idea. Love it!
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VL22, I know how frustrated can be, 4 weeks would be so much nicer. The Canadian always have 20 sessions and we have 30.
I have been dealing with insurance and doctor office regarding schedule and approval on my scans, it is very frustrating and I put on hold all the time. I hate it!
Hershey other clinics and hospitals should do that, it is going green.
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kim- I have to admit I am more nervous about radiation then chemo or surgery..I analyzed it for a while and I think maybe it is because chemo and surgery more more tangible for me..chemo I could SEE the fluid entering my body and week after week had side effects and could FEELthe umor shrinking..surgery was definitely tangible in that I no longer had breasts..radiation is like this invisible treatment..you can't really feel it and who knows what the heck it is doing to us..I close my eyes as well and try to envision a lead sack of sorts all around my body with just a small area where they radiate open lol...one thing I notice is my muscles cramp up very easily..my back, neck, even my feet...weird...anyway had 5 out of 30 today so 25 more to go..good luck ladies
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Hello, All! I can't tell you how much this group has helped me through this life changing BS, I mean BC ;0). Thank you all! Today was 20/20!!! I m so glad to be finished! I did a shorter course of radiation therapy at a higher dose. 15 to the entire pectoral area and 5 focused to the surgery bed/site.
The side effects were not worth mentioning until the last week, when my skin started to rebel; red, rashy and an insane amount of itchiness. Also my energy dipped and my muscles started aching. For my skin the RO team turned me on to Calmoseptine. I can't tell you how much this ointment has saved me from going insane from the intense itching. So if anyone else is suffering from the itch grab some Calmosertine. It wasn't easy to find in stores but Amazon has it, of course. -
congrats jeniphur & CindyNY you both did it amazing - woot woot woot!!! Im sure you both cried happy tears of happiness to be done!!!!!
Hershey that's a great idea, my hospital where i was doing rads just implemented wrap around gowns that where awesome, no flashing anyone while you were waiting to be zapped lol
VL22 i know it must be frustrating especially after they told you something then change it without even notifying you, i would have been angry too.
You ladies are awesome continue kicking butt, continue to put moisturizer on your skin. I would close my eyes & count the zaps until it was done, that would make me less nervous as i knew when the last one was coming & it was ending. Last day of zaps tomm ladies then your skin gets to rest
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VL22- I think shorter courses of rads are dependent on where your organs are placed. When I wanted the 16 rads, RO explained they wouldn't know until after my CT scan. To cause the least amount of damage to lungs, heart, whatever organs - they need to see where things lay. They should have explained it all to you. You did nothing wrong.
Smwusaf- I'll be doing some hormone therapy but won't know which one until I see MO on 2/6. I'm 58, post menopausal, so an AI but unknown. I've read some other posts on side effects, using brand name over generic, Eagle Pharmacy use, but until 2/6 its all just research on my part.
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okay, somehow I wasn't counting right and thought that yesterday was 10/20.... it was 11/20 Yay! I don't know how I did that, geez.
So I was talking with the techs because I've been reading about others watching the machines and counting zaps, etc and I can't do either, the machine I'm on has bright lights and I'm zapped twice for about 10-14 seconds each while i take a big breath and hold it. She said that there are several different types of machines and the one she trained on in NY didn't have the lights. I have to hold my breath to lift the area away from my heart so it doesn't get zapped.
I am starting to feel some fatigue and muscle soreness. Thank you all for reminding me to stretch. I look forward to the weekend break for sure.
Cindy, I'll be taking an AI too (I'm 54, post menopausal). My MO wants to try Arimidex first but she said we can try others if it doesn't sit well with me (SE). I'm praying for minimal SE. I already have osteopenia, I don't need any more bone loss.... I need to research more and check out other posts on here about the next step.
Happy Friday all!
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THanks all for your sympathies- after a good cry I feel better. I will talk to the RO on Monday. I believe the reasoning behind the change is for cosmetic reasons and my age pertaining to location of my tumor - lower inner quadrant on the right breast. I appreciate caution and changes, but to not be informed...if I didn’t look in my portal at appointments, when would I have found out?
Glad to see that it seems most are doing well. I too feel fatigue. #5 today!
Rest up over the weekend!!
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Hello everyone, how happy are we that it is Fri-nally Friday?
Congrats jeniphur & CindyNY I am so happy that you are finished with your RADS. I can only imagine how good that must feel. My breast surgeon told me I might be sad when I finish but I don't think so. The women who administer my daily for my treatments are pretty much all business, not what I expected, for them it is a job and I don't feel much emotion to/from them.
Hershey, we also have robes that we wear over our hospital gowns. I get my RADS on my stomach and the whole getting up on the table is very awkward. I leave my robe on the chair and then have to slip my arms out of the gown and the whole thing leaves me feeling very exposed as I awkwardly climb onto the table with the gown draped on my shoulders. I mentioned that there should be a better way, but no one there really responded. So it is what it is.
VL22 sorry for the disappointment and frustration at the plan being changed. I can really relate. Hugs.
I am so proud of all of you. This is very challenging and I am glad we have this place to share our real feelings. I feel so much pressure to put a positive spin on everything in my life right now, that having this place to express ourselves is important. I don't post much, I don't have the energy, but I read your posts and find them comforting. This was a week from hell, because the rest of our lives don't stop just because we have Breast Cancer, but its drawing to a close and I am trying to figure out what I need this weekend to restore myself. I might just spend the weekend pondering that and not coming up with any answers. LOL.
You are all warriors! Big Hugs!
One more thing: I have started to feel a prickling sensation on my chest especially above my breast and told the technologists. They said first step was to use Hydrocortisone cream over the weekend (in addition to the Eucerin Lotion) and then discuss with the RO on Monday. Just wondering if other people experienced this? Thanks in advance.
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Congrats jeniphur & CindyNY 🎉🎉🎉🎉🎉 Woot Woot!!!
Towards, my collarbone turned bright red now, other part of my body are red but not as red as my collarbone. My nipple is very tender and peeling also.
Going for my #29/30, I’m counting the number now. Last two boosts!
Happy Friday to everyone..... time goes by fast.
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Towards, yes I get that prickly feeling internally. Almost feels like when you're nursing and the milk lets down but a bit pricklier. Not sure if I'm describing that well....
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Towards, yes I was told to use the hydrocortizone cream when I started feeling that prickly/itchy feeling.
I was treated with IMRT therapy which stands for Intensity Modulated Radiation Therapy. There is no breath holding, the room was dimmed and there were no bright lights. I was laying on my back and after lining me up with the tattoos, they covered me with a warm blanket and put warmed sleeves on both my arms. I was never exposed. If it wasn't for the sound, I don't think I would know I was being radiated. I enjoyed watch the machine and could see inside it when it was overhead.
Here is more info about this type of radiation if anyone is interested (I am a nerd about understanding this kind of stuff!)
IMRT can be understood as a sophisticated form of 3D planning. The main difference between 3D and IMRT lies in what is occurring on the level of each individual radiation beam. In 3D planning, each beam is given a shape that attempts to match the outline of the tumor, or target, as seen from the beam's perspective (or 'beam's eye view'). The beam is then turned on and all of the radiation from that beam is delivered in that 'shape' toward its target. When the treatment is complete, the beam is turned off. If a piece of film were placed in the beam's path, a solid white shape in the exact shape of the beam would be exposed on the film, surrounded by black. IMRT, by contrast, allows us to create shades of gray in the exposed area instead of all black, or all white.
To do so, in IMRT, each individual beam is further subdivided by small 'leaves' that move across the beam's path at different speeds and patterns while the beam is on. Therefore, parts of the radiation beam are selectively blocked for a portion of the treatment time. As a result, certain regions of the radiation beam deliver a high dose, while other regions deliver a low dose. In other words, the intensity across the beam can be modulated–hence intensity modulated radiation therapy. Combining up to seven to nine such beams oriented around the patient, each aiming at the target from a different angle, can create even more sophisticated distributions of radiation within the body. The end result is a dose of radiation that can be higher in certain regions, lower in others, and even curve around nearby organs.
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Jeniphur, Hooray! Way to go! Sorry about the itchiness, but it sounds like there is a treatment. I don't like itching. I itch some, but I think mine is just from winter's dryness!
huey, I do feel ya. I try not to think about what it could be doing too much. I was really tired today--before and after. Can't imagine after only 5 treatments it's related. My right leg cramps badly on that very hard table I have to lie on. I am so glad it's just a few minutes. It's just not a fun experience at all. Have to remember all that we've been through prior to this. One week down feels good!
Towards..., I get some prickly feeings, too. I call them zingers. I never had children, so I cannot know the breast-feeding comparison. They are short-lived, so I just hope it's a sign the bad cells are being annihilated!
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Hi all, #16/20 today. Only 4 boosts left next week!!! I have been tired the last two weeks and I think just sick of it all. Kimpossible, I am getting the "zingers" too. Congratulations to Jeniphur and CindyNY! You must be so happy!! I do wonder what it will feel like when I finish. It will feel strange to not see some sort of medical person every day/week!
Towardshealth, I am sorry that your techs are so business like. I have to say, the techs where I go are amazing. I had to lay on that table for about 25 minutes today because they had to take xrays and I wasn't lining up correctly and they were all so apologetic. I have been fortunate that I have only met one person who was not nice through this whole ordeal. Surprisingly enough, that person was in the "cancer salon" that they have at the hospital where I go. She was just miserable.
I hope everyone can rest up and give their skin a rest this weekend! We got this!!!!!!
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Congrats jeniphur & CindyNY on finishing!! Such a great milestone
#17/30 today for me so YAY over halfway done. I do the turn to the side thing too - looking left as they zap my right side. It's to stretch out my upper torso a bit more. They also sometimes tape from just above (below?) my underarm towards my wrist to help get rid of the skin folds there too. Interesting enough. I am definitely getting more red/tan. Red around my nipple and under my breast, and tan under my arm. It's weird to look at for sure but they keep telling me that my skin is still looking pretty good compared to other people so that's good I guess. I'm still counting during my treatment. The last week my treatment changed from two zaps to three. One is still 13 seconds and the other two are 9 and 22. Am I weird that I have to know this? LoL. I have to go in for a longer appointment nx week as they are changing my treatment a little and want to make sure I am all set up ok for the last 2 weeks. I am definitely noticing more hair growing post-chemo, which is a bit of a relief. I was really getting worried there for a bit that nothing was happening of any significance. It's been 2 weeks on 10,000 mcg of B7 (Biotin) so I think that is making a difference. Of course, in addition to my head, I started growing hair everywhere else too. Sigh... Last but not least, I started back to work today too. Pretty uneventful, but glad to have started the process of getting back into work. I think my biggest challenge is going to be getting up earlier in the morning. I've been waking up at 8a for the most part which is super late. 6:30 is going to hurt next week.
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Jeniphur- congrats on finishing! I don't know how I missed that we both finished at the same time. I'm mixing aloe, hydrocortisone and Aquaphor - messy. Sometimes the "itch" is worse than other times. Can't wait for good skin!
Lewhy- 4 more treatments, you got this!
PauletteK- 2 more, easy peasy, you also got this!
Smwusaf- you're right behind these ladies.
Take the weekend to slather on the lotions and enjoy no rads on weekends!
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One more to go ..... glad to have a weekend off! Boost is not that bad, but skin still hot, and red especially on my collarbone. I asked my techs she explained whenever there is skin folded it will be more Intense. I got little bit of folding under my neck so it turned more red.
I have very little itch so I still haven’t use any cortisone cream.
I count my zap also scaligirl, I have 4 zaps for boost, they are about 10 scones long, one is about 15 sec. I think that calm me down when I do that. Also I pray once they walked out the door,
Happy Friday to all of you, time to rest up our skin.
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This is how red the skin on my collarbone
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Hello Ladies,I'm going to be starting my Radiation treatments Monday at 3:00. I went yesterday for the simulation & wow,it was scarey!! I don't know what I was expecting, but this seems to cause me more anxiety than all the other stuff I've been through.Maybe after talking with you all I will be more relaxed about entering this phase of my treatment.I've been trying to tell myself that it is just like going to the tanning bed.
Thanks for being there for me.....Dianne
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Oh Paulette, I hope you are not in too much pain. I'm glad the collarbone area is not itching you. You are so very close to finishing your treatments! Be well and stay strong!
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Hugs Chips,
I was where you were two weeks ago. I think everything we have been through the last few months accumulates physically and emotionally. The biopsies and surgery were early on when we were still numb in a way. We are here to support you. You can do this, one day at a time.
I have good days and days where it all feels too much. So grateful that I can come to this forum and know I am not alone. What we have to go through is daunting but we can get through it, step by step!!
💗🎀🌸🤗
Sue
9 ⬇️ 12 to go (7 whole breast, 5 boosts)
TGI Saturday!
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VL22, I understand your need for good communication and commiserate with your distress when your plan changed. There are many others here who had the "long course" and I'm sure you'll make it through like the warrior you are! I feel like I'm the queen of changed plans, and I'll hopefully be doing RD with you soon.
Jeniphur and CindyNY, WAY TO GO GIRLS!! I am celebrating with you. Life was too crazy for me to log on and congratulate you yesterday, but hopefully my belated good wishes will get to you today. I am so happy for you both!
Paulette, I am hoping that as you cross the finish line next week (yeah!) that your body and skin will breathe a sigh of relief and heal quickly. I've been taking notes on how you have cared for yourself through all this and thanks for being so strong for all of us.
Chips, welcome to you and I hope Monday is easier than you expect it to be. Keep us posted on how you are feeling through all of this. Looking at your Dx and dates, can you share how the timing of your treatment was decided? Are you planning on hormone treatment after RD? I'm guessing your nodes were clear (hallelujah!)?
Congrats to all of you who have made it through your first week
I'm praying for little/no/improved SE's for all of you this rad free weekend. -
Chips welcome to this group, we all were scared when we started then we learned to stand up to that machine and fight against cancer.
One more boost on Monday and that will be it. For the boost it is not treating my collarbone area so I think it hit the worse now. I’m putting cream on whenever I feel uncomfortable. Please don’t let me scare you, it is not too bad.
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Yikes Paulette! I am so glad you are at the end
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Since I feel like I've been so complaining and rather low lately, I wanted to report that it was a gorgeous day here and I took the kids skating/rollerblading and we had a wonderful day. So I'm feeling refreshed and ready for the coming week. Praying for a good day tomorrow as I'll be working in order to make up for missing Wednesday for my upcoming MRI Bx. Rest well, warriors, and wishing you all the best!
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