June 2012 Radiation Rads
Comments
-
Okay, all the talk of headaches, I had one today! #14 Then I realized mine was
from gripping the bars so hard over my head. My neck muscles are all tight. I don't
know why I can't relax and not grip those handles or whatever you call them!
Do you all grip or is it just me?
-
Done 3 of 28 and today is Friday here so will be off for number 4 this afternoon.
My breast and underarm skin has been sensitive since right after number 1 and today my underarm is quite sore. I'm guessing this does not bode well for my journey through rads (which I still do not have peace with anyway) :-/
Since I had axilla involvement and didn't have a clearance I am getting axilla to level II nodes targeted (but not supraclavicular). Today since I can now clearly feel the treatment field I have realised that the inside of my right upper arm, to about a third of the way down to my elbow is being hit. This seems like a LOT of my arm.
The RO did show me the plan quickly on Wednesday but I was worried about seeing how much of my right lung (16% at V20) and heart (4 grey) are being hit and didn't look at that area. Anyone else getting axilla rads and having your arm that involved?
Jenn -
Jen my under arm seemed sore almost from the first week but nothing that I even needed an ibuprofen for an not until the last week of rads did I have major peeling and pain. Itnis now one of the worst parts but really it dis not progress from mild discomfort until the end. There is hope
Good luck to all -
I didn't ask about creams etc. yesterday but the doctor volunteered the information that if the area gets sore the best treatment is to shower with lukewarm water and wash the area with a mild liquid soap. Has anyone else had that advice?
-
So since my skin is so sensitive (I found my breast lump because I felt it hurting where all the docs said they were shocked I could feel it) and after 3 days I can clearly feel the exact area that I'm being "hit" I got concerned this morning when I could feel the field is going down the inside of my arm about 1/3rd of the way to my elbow! I know my axilla is targeted but not that much of my arm!
I think I told you guys that on my first day the tech whipped out tape and taped my arm back to "get it out of the way"? On the second day I said I would not allow them to do that because of the risk of lymphodema from my arm being effectively tourniquetted and the tech got "huffy" and said "well, if you want it that way". Silly me had assumed they would make sure when placing me that the arm would be out of the way...
Yesterday during set-up I mentioned to the (different) techs that the arm rest felt like it was in a different place like for a shorter person and my arm felt like it was scrunched up. They didn't seem concerned and I trusted them...
Today I emailed my RO and said that from my observation my arm seems to be getting hit and I was wondering why. She phoned me and tried to explain that I needed to let the techs tape it or I would have to accept that some of my arm may get hit! Well, did I politely stand up to that. I stated I was not prepared to compromise on either the tape or the arm being hit and I was sure there was some way they could ensure that it wasn't getting hit since other people didn't seem to have that problem.
Anyway, the RO came to the set up today. When I arrived the tech told me "we have moved the arm rest for you". The RO came in and checked and put a pen mark for me so I can see where the field finishes and that my arm is not being hit so much (still a bit further than I like but she assures me that is standard axilla height).
Such an easy "fix" to move the armrest... I think it was just pure laziness. They are a very busy centre, their patients are usually shorter, older and frailer than me (I'm tall and healthy and have a full, but not too full, figure) and they just like to leave the board in a standard "one size fits all" configuration that didn't fit me.
I am now wondering if the RO had assumed the techs had already tried everything possible to my arm out of the field. She was certainly aware of me having said no to taping my arm...
So, trust is not something I'm high on right now. Careful vigilence is what I'm working with... Jenn -
Jenn: Thank you for your observations. I will be honest and say that I have not asked any questions about my rads or what is being "hit" during treatment because I don't understand all of this - it's just way over my head. For some reason, chemo wasn't. But you've made me realize I need to understand what's happening, I need to ask questions, and I need to advocate for myself. Thank you for that encouragement! And good for you for continuing to question and advocate for yourself. I'm glad your RO showed up for treatment - feels like she was taking you seriously.
Peggy: I haven't heard anything about warm showers and mild soap. I'm still continuing to use my favorite body wash, but will ask my RO about that next week. Thanks for the heads-up.
Yesterday was 13 of 30 for me and I've been excited about getting to the half-way mark next Monday. I've been saying that so far everything still looks and feels normal, so I laughed yesterday before tx with my tech that he wasn't actually *doing* anything. Yesterday was "scan" day - every 10 days they do x-rays to ensure that everything is still in the right field and make whatever adjustments are necessary (I assume because rads will make my little booby change shape over time). For some reason, after yesterday's tx my left shoulder is killing me, as is my upper left arm. Both of my scars are tight and sore, too. I came home and worked in the garage (it was 102 degrees here yesterday) and maybe I just overdid it, but my arm is "heavy" this morning and I have pain in the back of my left arm, so I'll talk to the tech this morning. Jenn's post makes me wonder if my arm is getting hit - I don't know. I just want this to be done.
-
Nancy - halfway :-)
I have been having a shower in the evening when I get home. Mostly because I hate the pen marks... I use my organic goats milk soap which is very mild.
My RO really gave no advice on products. I have some papaya and calendula cream that I've been using.
Jenn -
Just finished 20 out of my 25 scheduled rads. My skin looks just fine and I'm not sore. A little red under my arm and on the back of my shoulder. Can't see anything on my neck.
Only 5 left. My pink Champagne is chilling in the fridge just waithing for 7.6.12
<br />
Have a nice weekend! -
Denise....I grip extremely tight to the posts. They have my head turned to the right also, so maybe the headache is from just being in an awkward position and tensing up. I am going to focus again on relaxing today. I still am hoping for some anxiety meds to get me through.
My RO said to use lukewarm water and Jergens soap, aloe Vera and the Radx creams I mentioned.
Jenn....thank you for being so on top of things. I haven't paid that much attention either and realize I should be. I will pay better attention, but I have to get my nerves calmed down first. I'm afraid if I over think it right now I might make it worse.
Hope everyone has a peaceful day .... Off to get more hugs from the machine! -
Rava - can't believe you have 20 down already! WOW!
15 out of 33 down today. Thrilled to have 2 days off and 4th of July off!
Jenn - thanks for letting us know all this technical stuff. I'm like Nancy, Radiation is kind of over my head (no pun intended). With Chemo, I feel like I knew about every detail. I really think I don't want to know which is so unlike my personality.
That arm rest thing is ridiculous! So glad you pushed them on this! GOOD FOR YOU!! And to get the RO in there too. HUGE! And taping your arm - crazy!!
Nancy - someone told me about warm or cool showers, very mild soap (I'm using some baby organic soap), and not to direct the shower spray directly at the area. I back up a little.
-
Hi All,
So glad it's Friday. 8 down today - 8 to go! Skin is looking great, starting to feel a tiny bit itchy though. I'm putting aloe and calendula on 3 times a day now (right after treatment, on my lunch hour and when I get home) then using aquaphor or coconut oil at night. I'm a bit more tired than usual, but haven't slowed down at all.
I was told to use a mild soap and cool water, or no soap at all on the treatment area. I use Dr. Bronners liquid baby soap.
When I feel myself gripping too tight, I say "surrender." It's been my mantra through this all. Not surrender as in give up, surrender as in surrender to all that is and will be - surrender to life. Yoga breathing and meditation have been my saviors throughout this journey. I also offer up my treatment to all who are living with cancer, including several friends of mind. Once I'm lined up I say to myself "let this be healing for all living with cancer."
I've been offered anxiety meds all the way through. Haven't taken any as I wanted to be connected to every experience. That being said, I totally understand why any of you take them. I think we each need to know ourselves and what is right for us. For me, this journey has been about learning to trust my intuition - my ability to make decisions and knowing that I am stronger than I ever thought possible.
Namaste' and blessings to you all.
-
Loveforlife: I was so nervous during my first radiation treatment that I started pranayama breathing, from my belly, slow inhales and exhales...relaxing, finding peace and comfort...
...and because I use a breathing machine to "hold" my breath, I have to actually breathe very fast, and from my lungs (a computer analyzes the breathing pattern, tells the tech when I should take a deep breath and hold it for the treatment). There's a two-minute window in which to do both treatments or they have to "start over" and if I breathe too slowly the window closes. :-) The techs and doctor have said they've never seen anyone breathe so slowly and calmly during radiation.
Yoga has been my center for many years, especially during treatment. I am so grateful for my practice during these difficult times.
-
Nancy. Im in the same situation as you. The techs have a hard time because my breathing is so slow and calm. I have been meditating over the last 4-5 years. I found it very helpful during this rather big "pump" in my life ...
-
Today was much better again....8 down! I was able to calm down more, didn't grip quite as tight and the thought of the machine being Gods Arms and hugging is actually helping. Oh and the best part....no Billy Joel playing....no music at all so maybe that made it better too!
I still want some anxiety meds, primarily because for the first time ever my normal methods of calming myself aren't working. I have always been able to balance a very hectic career and walking a very peaceful, calm, spiritual and structured path in life, but this diagnosis has thrown me for a loop. Now, a lot has happened in the last year for me, a lot of change...after 10 years of urban living in Chicago i moved back to my hometown of about 50k because i fell madly in love with my soulmate, I barely got my closet organized and shoes unpacked when I got this diagnosis, none the less even had figured out how to live in a small town again...a lot of new in a short period of time. I had been super calm and positive in the beginning, but this whole radiation process has and still is just really scary for me. I just need some help temporarily to calm me down to get back on my path. I do journal, medititate, walk 5 miles a day, but I still feel like a jumble of nerves. One thing I have learned on this journey for me is giving myself permission to ask for help and to not be super woman all the time, that's my usual routine, so knowing I need something for anxiety and asking for it is a huge step for me!
Loveforlife and Nancy...I have found a really good yoga instructor, took me a bit to find someone, she is going to start working with me next week. I am grateful to know the yoga will help and I admire both of your peacefulness .... You both have gone through a lot on your journeys with breast cancer and that's very inspiring for me...thank you for the guidance! Do you have any specific yoga practices you would recommend?
I do have a question....Is anyone experiencing a lot of swelling? Speaking with one of the techs today, I was questioning why I am experieincing pain already and if it is my skin or my actual breast, when my skin looks ok, but just a little pink and as we talked through it....my breast is really swollen, which is making it heavy and it seems to be stretching my skin and most likely causing the pain. I am really small breasted so this new heaviness is part of the discomfort and putting tension on my skin. She can't specify why I am swelling so much, could be because I am still healing from the lumpectomy which was not quite 2 months ago and they are hitting that spot pretty hard. -
Well I don't know when it happened, but yeah Riverangel. I've gained 2 inches and a cup size over this whole process, meanwhile, I've lost 13 lbs, and have to choose my jeans carefully or I'll lose them to. I've been don with Rads for a while, and maybe things are a little better, but not enough to get back into my old bras and tops.
I do have a small case of lymphadema going on so that's part of it, but the therapist thinks some of the swelling is from Rads.
-
Evening all,
I am amazed what what we are all able to tolerate on this journey. Taping my arm down, i DON'T THINK SO, Glad you spoke up Jenn.
Billy Joel every AM with Uptown Girl, certainly not!
Ahhh and then there is the actual treatment. I am not fond of my RO tho everyone I have met who used him, loves him, so I guesss it must be me. His techs are great and I am always in and out in 20 minutes from the time I walk in the door til the time I walk out. 'I had # 16 of either 25 or 30 today. RO is somewhat noncommittal about length, I see him on Monday so will insist in a definitive answer. My skin is red and itchy, but cream is working . Feels like a sunburn. I am doing herceptin at the same time. It is once every 3 weeks so today was a day that overlapped . Rads at 8:20 and herceptin at 9:45. What a day!! What a day!
Can't wait to be done with this portion.
Gentle weekend for all
Nel
-
Riverangel, as I was gripping the bars today I thought about YOU!! I informed the staff that I had some issues with anxiety on the "table" and it felt so therapeutic to share this with them. I asked them to play nature music or meditation music, and that helped too. I take my Xanax one hour before treatment and today went really well, even though I was so apprehensive. I use pure Aloe Vera Gel (take the plant leaf with me!!!) right after treatment and then use California Baby Calendula Cream (Target) and Aquaphor . I have no redness yet, but my skin is not very sensitive. I wonder if your headaches are from the Aromasin, it could be. I will have to take Tamoxifen, but not until rads are over.
I am glad you found a cream that helps your pain. There is a lot out there and we are all different, but share this diagnosis with each other. I was so clueless about breast cancer before. If it is not you, it is just there, but I never really realized what women go through.
I am reading a really good book called "Sacred Choices, The gentle art of disarming a disease and reclaiming your Joy!". It is hilarious and a really good read about a woman (Hedy) going through breast cancer and all the choices she makes. And she makes lots of them and touches so many people in doing so. I can recommend it highly.
A happy weekend to all my sisters! You are strong, and you can get through this!!
Hugs, many and to all!
Iniah
-
Riverangel--I finished #10 today and have been having swelling since the end of week 1. It is uncomfortable and my RO just told me to take some over-the-counter meds as needed for now. He also said if the swelling keeps up, they will do another scan before the boosts in a few weeks. Never a dull moment!! Take care.
-
Can someone tell my what the boosts are?
-
Rads and Herceptin at the same time...wow Nel, you are amazing!! You are an inspiration!!
A good weekend to you too!
Iniah
-
Boosts are additional radiation to a specific area. Such as a tumor bed/scar/or infected lymphnode. At my facility they put an extender on the machine that holds a metal plate with a personalized whole cut out of it. That plate directs the rads to a much smaller area instead of continuing to treat the whole breast. Hope that makes sense
-
yep, makes perfect sense, remember reading about that now. Thank you for the explanation.
-
What an inspiring blog Nancy!
Thanks for sharing!
Iniah
-
Iniah....well I was thinking of you too this morning, so it guess we are no longer alone we are each others angels!
. It could be aromasin, I have issues with being on this too, such another story....I have stage 4 invasive endometriosis, so I was in treatments with Lupron 10 years ago and my menses stopped in March (or so we thought), well since they had stopped, I was on the Lupron for so long, my MO put me on Aromasin because I can't be on Tamaxofen because of my endometriosis, but then last week guess what appeared again....so now I have to see my MO to find out what to do. And I am concerned about doing that and rads at the same time. I should mention, I am 44 years old so the idea of me being in menopause was odd, but with my history probable. The irony is the last time I saw my MO, I asked him why we hadn't done bloodworm and he said it wasn't necessary....I think he was wrong.
Thanks for the info on the swelling, will just keep track and I do see my RO each Wednesday and can talk to him next week. It just concerns me because it started so soon or I guess sooner than I expected.
Have a peaceful weekend all! -
Iniah,
Thanks for the book recommendation. I am on amazon shortly. If it is funny at all I am on it!
Slept 12 hours last night. My life for the last couple of weeks has felt like I have been on a treadmill, and then add rads and this week herceptin. I do feel rested this AM.
Hope everyone has a gentle SE free wekeend
Nel
-
River angel, sorry for the space, iPad has a mind of its own.
I haven't had headaches from rads, I've had 13 treatments so far.
I have had diarrhea. I keep looking at side effects and is never listed. Anyone else having the same problem. If its not the radiation, maybe it's the arimidex.
Still waiting to lose my first ounce!
My skin is fine, using all the stuff you all mention. The Gel Pads after the treatments really help a lot.
My techs have been great. Very friendly and caring.
My RO has absolutely no personality at all. I will NOT Miss her at all. -
I've had swelling since the first week as well. My nipple is twice as big as its partner. No upset stomach though. Today will be number 15 and I see the RO tomorrow and get my weekly scan. Since my BC diagnosis I have had abnormal periods. My pap came back last week with abnormal cells so now a biopsy on Thursday. Wonderful. I shouldn't have looked up risk factors and symptoms of uterine cancer...
-
Diana. (((hug))) if it's not one damn thing it's another. Hoping for b9 results for you!
I just had a pap last week and haven't heard anything yet, so hoping no news is good news.
-
Big hugs, Lagata. So sorry you're going through all this crap
-
I live in the Washington DC suburbs and had no power all weekend from the derecho. Thank goodness we finally got it back last night - the temperature in our house was up to 88 degrees, and it was humid and miserable. I slept like a rock last night after not getting much sleep the previous 2 nights.
Getting treatment 16 today. Skin is a little itchy and I might have a bit of a heat rash on my chest. Other than that doing fine - never appreciated A/C so much in my life.
Hope your biopsy goes well, Lagata. So sorry you have to deal with this.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team