JUNE 2018 starting RADIATION

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  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 99
    edited June 2018

    I'm throwing in an update here. I finished 15/28 today, and so far, just slight pinkness, I DO slather up three times a day, every day. In the morning and immediately after radiation (I take it with me), I'm using Utter Balm. At night when I don't care what gets on my pjs, I use either calendula oil or emu oil. I'm pretty sure that being regular with the slathering, along with good luck/genes, is why my skin is fine . . . so far. I also realize I have 13 more to go and side effects are cumulative.

    I have been tired and taken naps early on, but now I try to force myself to stay up until 9:00. I don't see how those of you who work manage it! Good luck to us all.

  • Oneof7
    Oneof7 Member Posts: 59
    edited June 2018

    If you had a cboice, how many hours would you work a week while going through radiation? And if you work, how many weeks after surgery did it take for you to get back to work? Im presurgery with current treatment plan being 6 weeks of radiation 5 days a week. I'm hoping I can get back to work in 3 weeks. Reasonable or fantasy?

  • mwaucker
    mwaucker Member Posts: 19
    edited June 2018

    I am happy to report that I think the fatigue I experienced last night was just a precursor to what I would describe as the worst migraine I've ever had! I woke up at 1 AM with my head screaming at me. I took some meds and woke up again at 3:30 AM with all kinds of energy. I've been going strong since then and am feeling good. Yay!

    Oneof7 - I took minimal time off with my lumpectomy. My surgery was on a Friday and I went back to work on Tuesday (I would have gone back on Monday but I couldn't shower until Monday afternoon so I decided it was better to take the day). I was out running errands on Sunday though...the whole thing was much easier than I expected. I had almost no post-surgery pain or discomfort...they seriously just put a bandaid on my incision. HAHA. I remember coming out of sedation and looking at the surgery site expecting to see gauze and tape...the whole nine yards...there was just a bandaid. I looked at the nurse and said “where is the dressing", she said “that's it"! Granted it was a sturdy one, held up to a couple weeks of sweat and showers, but still...a bandaid. I had to wait 2 months post-surgery to start rads so I'm not sure how much time off I would have needed/wanted if I had to jump right into it. Best of luck to you as you figure out your plan!

  • PalBuddy
    PalBuddy Member Posts: 27
    edited June 2018

    Hi Everyone!

    I am doing the June rads and appreciate all your sharing. I am on 8/20 treatments as of today. I think the fatigue has arrived. But, could be stress. I get very achy after treatments. But mine is on the left side where, a year or two ago, I had dislocated shoulder, rhomboid ligament tear and then frozen shoulder...so I have a hard time holding my arm up. I am face down for the treatments. (Is anyone else? Or is everyone else?) And, I think a bit emotional (like some others have mentioned) afterwards, too - but who knows what that's from?

    Also, my doctor said not to use Aloe. That Calendula was best. (Some people were reacting to the lanolin in Aquaphor, a nurse told me...)

  • ChelseaSculler
    ChelseaSculler Member Posts: 73
    edited June 2018

    Today was my first boost, which is lying on my back. Seriously, y'all, I have great ROM and I still don't like holding my arm in mid-air/on the support for that long—big props to those of you who do your entire treatment that way! (Prone with my arms up was super-simple, I could easily have taken a nap) Four to go...I finish the day after Independence Day.

    I went back to work the day after my lumpectomy, Oneof7, and I've worked through radiation. I do have relatively flexible hours, so it has ended up short of a 40-hour week during radiation, but once I realized I hadn't adjusted my bedtime to my early treatment time, the fatigue has been much more manageable this week.

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited June 2018

    Oneof7- I think everyone is different and it depends on the surgery. I had a lumpectomy on both sides along with sentinel node biopsy. Only the right was cancerous. The nipple-ectomy (because of Paget's disease) was a pretty long incision but as mwaucker said I came out with just a big strip of glue across it. It just looked like a really long scratch! In total I had 4 incisions on both sides and went home with the special bra from the hospital. Honestly I could have made it through work the next day if I had needed to. My surgeon recommended two weeks so that's what I took but I bounced back in a day or two and was out and about right away. As far as radiation, I've been able to work full time throughout with no issues. No real fatigue or other symptoms so far and I'm halfway finished but I am also purposely taking it easy in the evenings after work and on the weekends.

    PalBuddy - I'm face up but having radiation on my right. The emotional wave I was having last week seems to be gone this week? It was about 8 when I had it the worst so you seem to be in the same place I was when it hit. This week I seem to be breezing through with no issues. Knock on wood!

  • Sweetcaro79
    Sweetcaro79 Member Posts: 31
    edited June 2018

    I keep getting light headed when I stand up. Just checked my vitals at work and they were fine. I’m hoping I just need to drink more water. Anyone else feeling light headeded? I finished 9/20 of my treatments today

  • pleasantsa
    pleasantsa Member Posts: 18
    edited June 2018

    Hello All,

    This is my first time on this thread. I had a lumpectomy and SNB with IORT (intraoperative radiation therapy) on 5/4. I had hoped the IORT would be it for radiation, but they found unforseen DCIS on my pathology so I'm doing 5 1/2 weeks of rads with no boost (they consider the IORT as the boost). My Oncotype DX score was 9 so no chemo. I just had my 2nd rads treatment and I'm about a week into taking Tamoxifen, so far so good with both.

    I'm on my back for treatment with my hands holding onto a bar over my head. I have to take huge deep breaths and hold my breath while the radiation is being administered so there is no listening to music or books because they tell me through a speaker when to inhale, hold, and exhale. My understanding is that the deep breaths put more space between my breast and heart since it's my left breast. Does anyone else have to do the breathing thing? My breast is already turning pink (I'm light skinned African-American) so I just ordered Miaderm from Amazon. I have rads in the morning before coming to work. If I end up with serious fatigue I'll change to late afternoon treatment and go home after.

    Angela

  • Motherofall6
    Motherofall6 Member Posts: 65
    edited June 2018

    today I did 13/33 so that’s 20 more to go still but it seems to be going quick, I been putting on my cream they provided me with twice a day every day and skin is good so far, next week we will get a Wednesday break for the fourth

  • Homemadesalsa
    Homemadesalsa Member Posts: 153
    edited June 2018

    Hey all- I've been following along. Just started my rads on Monday, June 25, so now I have completed 3/33. Woo-hoo very auspicious number, but into the 20s not 30s, right? Finish on August 9.

    So I too had left mastectomy/ axillary nodes all removed. Am on my back on the table, holding handles above my head, and I take a deep breath and hold during treatments. I am skinny so there is not much room to miss the heart and lungs, so holding the breath keeps me still and brings the tumor bed away from those zones. It isn't hard, just takes "setting my chest" for 20 seconds or so. My RO uses aloe, suggests it 3 times a day, with Aquaphor as second choice. No skin or fatigue issues yet.

    They play my Pandora station (Susan Tedeschi, BTW), and it stops whenever they give an instruction. Incredibly nice techs, very encouraging and patient, thorough. It's pretty wild, though, as the wings of the table rotate around me. I keep my eyes closed and just listen to the music. Not emotional at all, just very reassuring that this procedure makes it less likely that the little bugger will EVER come back.

  • Pattimills2017
    Pattimills2017 Member Posts: 41
    edited July 2018

    1 down 19 to go! I injured my shoulder doing yard work. It would make it easier if my shoulder didn't hurt so bad.

  • Puzzlewoman
    Puzzlewoman Member Posts: 171
    edited June 2018

    All, here in my last week not feeling too well so I hadn’t felt like posting. I cannot wait to be done Monday! Hope all of you are doing well

  • Mrsmcg
    Mrsmcg Member Posts: 67
    edited June 2018

    I didn't read the full article, but is there a reason given for not using aloe?

    I finished my treatments on June 21st (seven days ago). I have used some aloe, but not that much. Aloe doesn't heal radiation burns, it just soothes the burning sensation. Using aloe also seems to dry out my skin. My RO said that it will take about a month or so for my skin to heal. She said that my skin hasn't broken down, but I don't know what that means. My skin definitely has been peeling.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    Welcome pleasantsa. I'm getting rads to the right so no wierd brething for me. :) Earier some were commenting about it, I'm sure they will jump in soon.


    Best.

  • Mrsmcg
    Mrsmcg Member Posts: 67
    edited June 2018

    Hello Oneof7 - I completed 4 weeks of rads last week. I had 16 treatments and 5 boosts. I did all of these treatments while working 8 hour days - 4 days a week. Most of my appointments were done on my lunch hour. My employer wasn't very understanding, so this was the best I could do, since I missed 3 weeks of work due to surgery, which used up all of my sick leave. I was able to manage by drinking a protein drink on the way to my treatments. A couple of times I had someone who had lunch after me pick up something that I could eat at my desk while working. I work with another gal who had chemo, and is now going through 6 weeks of rads. She has continued to work during her rad treatments. I hope this info is helpful for you. Please let me know if you have any questions.

  • TrailDweller
    TrailDweller Member Posts: 51
    edited June 2018

    How long after the simulation did you start rad treatments? I'm told it will be 2 weeks. I'd just like to start so I could get done.

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited June 2018

    TrailDweller - I was told it takes a week to get the machine set up after the simulation. It was right about that for me and they were rushing me as they knew I had dates at the end that would be an issue. If they are overly booked or dealing with vacation schedules it could easily have been two weeks.

    Puzzlewoman - relax and heal up this weekend! ONE MORE!!!

    Pleasanta - Mine is the right as well so no deep breaths for me, no music though either or at least my music. They have some going but I'm barely in there long enough to even notice whats on. I just can't focus on it.

    Lucky 13 for me today! 3 more full and then its all boosts finally! Skin is doing surprisingly well so far. Slightly pink but not painful. My sentinel node scar is red and angry looking but just the scar area which is weird? I don't know its not bad and I have the next two days for it to recoup a little.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    TrailDweller - I think it really depends on the location. I had the first planning session on a Monday, 2nd one on a Wednesday and my first treatment immediatly after.

  • ChelseaSculler
    ChelseaSculler Member Posts: 73
    edited June 2018

    Traildweller, it took about 5 days. And given that there's planning and checking and counter-checking going on, that's not a bad thing. Having multiple sets of eyes on the plan to make sure it's the best possible option for your physiology is a good thing. I made a point of asking to make absolutely certain that multiple people were weighing in!

    Unrelated, the heat has arrived and my skin is beginning to itch. <sigh>

  • missmelissa90
    missmelissa90 Member Posts: 46
    edited June 2018

    I'm at 14 of 30 and turning a little pink on the areas being zapped, but I'm having skin rashes develop in areas that are not in the line of fire (my chest and my lower back). Is anyone else seeing this?

    Mrsmcg-

    Here's the an overview of the article- I think that there is lots of good information to take away about other treatments. I can't tell if they are saying Aloe is bad or that it is simply ineffective. I'm using a prescribed cream, Momentasone, and I put it on right after treatment each morning and it is either working or else I'm just really resilient.

    www.medscape.com

    ASCO Endorses Some Complementary Therapies in Breast Cancer

    Roxanne Nelson, BSN, RN

    June 20, 2018

    Many cancer patients use alternative medicine, including supplements, massage therapy, yoga, and accupuncture, while undergoing conventional cancer care. Such therapies are usually acceptable, but patients must be discuss such therapies with their oncologist, because interactions may occur.

    That appears to be the take-home message from the recent move by the American Society of Clinical Oncology (ASCO) to endorse new guidelines issued by the Society for Integrative Oncology (SIO).

    The ASCO endorsement was published online June 11 in the Journal of Clinical Oncology.

    The SIO had produced an evidence-based guideline on the use of integrative therapies during and after breast cancer treatment for the management of a variety of symptoms and adverse effects. An ASCO expert panel, cochaired by Gary H. Lyman, MD, MPH, codirector of the Hutchinson Institute for Cancer Outcomes Research at the Fred Hutchinson Cancer Research Center in Seattle, Washington, and Lorenzo Cohen, PhD, director of the Integrative Medicine Program at the University of Texas MD Anderson Cancer Center, Houston, reviewed the guidelines.

    The panel determined that the recommendations in the 2017 SIO guideline "are clear, thorough, and based on the most relevant scientific evidence." ASCO endorsed them with a few added discussion points.

    "We know that vast the majority of cancer patients, particularly breast cancer patients, are using some type of alternative medicines," Lyman said in an interview. "They may be taking supplements, doing yoga, getting massage therapy or acupuncture, but most doctors don't talk about it. They don't ask about it, and the patient doesn't offer the information."

    Lyman estimates that 60% to 80% of breast cancer patients use some type of alternative therapy, but such therapies are not entered into the medical record. That generally is not too much a cause of concern, because most of these approaches are relatively safe, he noted. "But occasionally, there may be some interaction with a supplement and standard medicine," he said.

    He told Medscape Medical News, "The biggest fear is that a patient is going to stop using a known effective conventional medicine and use one of the alternative approaches instead.

    "That's why we want to make sure that the doctor and patient are discussing them, the doctor knows what the patient is doing and discusses the subject in a nonjudgmental way, and then encourages the patient to report any problems or side effects they might have," he explained.

    It is also important that oncologists reassure patients that they can continue to receive their regular cancer treatment along with these alternative approaches.

    Review of Recent Literature

    The ASCO guidelines are an endorsement of a guideline from a much smaller organization, explained Lyman. "The SIO had approached ASCO about this, and they had done a really deep review of the available literature on these therapies," he said. "ASCO formed a panel, and we did our own search and added several studies that had come out since the other work had been completed."

    ASCO used a modified version of the US Preventive Services Task Force grading system to assign a grade to each therapy, as applied to a specific clinical outcome. Grades A and B indicate that a therapy is recommended for a particular indication; grade C indicates that more evidence is needed or that the net benefit is small; grades D and H indicate that a therapy is not recommended for a particular indication; and grade I indicates that the evidence is inconclusive.

    Lyman noted that the ASCO panel supported almost all of the recommendations in the SIO guidelines. "Some had sufficient evidence to recommend them, and for some, there wasn't much evidence, but they didn't incur any harm, and some approaches had no evidence," he said.

    Key Recommendations

    Some of their key recommendations are as follows:

    • Acute radiation skin reaction — aloe vera and hyaluronic acid cream should not be recommended for improving acute radiation skin reaction (grade D).
    • Anxiety and stress reduction — meditation (grade A), yoga (grade B), and music therapy (grade B) are recommended for reducing anxiety. Stress management is recommended for reducing anxiety during treatment; longer group programs are likely better than self-administered home programs or shorter programs (grade B). Acupuncture, massage, and relaxation can be considered for reducing anxiety (grade C).
    • Chemotherapy-induced nausea and vomiting — acupressure (grade B), electroacupuncture (grade B), ginger (grade C), and relaxation (grade C) can be considered as an addition to antiemetic drugs to control nausea and vomiting during chemotherapy. Glutamine should not be recommended for improving nausea and vomiting during chemotherapy (grade D).
    • Depression and mood disturbance — meditation, particularly mindfulness-based stress reduction (grade A), relaxation (grade A), and yoga (grade B) are recommended for treating mood disturbance and depressive symptoms. Massage (grade B) and music therapy (grade B) are recommended for improving mood disturbance.
    • Fatigue — hypnosis and ginseng can be considered for improving fatigue during treatment (grade C). Acupuncture and yoga can be considered for improving posttreatment fatigue (grade C). Acetyl-L-carnitine and guarana should not be recommended for improving fatigue during treatment (grade D).
    • Lymphedema — low-level laser therapy, manual lymphatic drainage, and compression bandaging can be considered for improving lymphedema (grade C).
    • Neuropathy — acetyl-L-carnitine is not recommended for the prevention of chemotherapy-induced peripheral neuropathy in patients with breast cancer because of the potential for harm (grade H).
    • Pain — acupuncture, healing touch, hypnosis, and music therapy can be considered for the management of pain (grade C).
    • Quality of Life — meditation (grade A) and yoga (grade B) are recommended for improving quality of life. Acupuncture, mistletoe, qigong, reflexology, and stress management can be considered for improving quality of life (grade C).
    • Sleep Disturbance — gentle yoga can be considered for improving sleep (grade C).
    • Vasomotor/hot flashes — acupuncture can be considered for improving hot flashes (grade C). Soy is not recommended for hot flashes because of lack of effect (grade D).

    "Our hope is that this will help disseminate this good information, break down barriers, and open up dialogs between patient and doctor," Lyman said. "Hopefully, patients will have improvements in their outcomes."

    All funding was provided by ASCO. Dr Lyman has relationships with Generex Biotechnology, Halozyme, G1 Therapeutics, Coherus Biosciences, and Amgen (Inst); several coauthors have also disclosed relationships with industry, as noted in the original article.

    J Clin Oncol. Published online June 11, 2018. Full text

    Medscape Medical News © 2018

    Cite this article: ASCO Endorses Some Complementary Therapies in Breast Cancer - Medscape - Jun 20, 2018.

  • Mrsmcg
    Mrsmcg Member Posts: 67
    edited June 2018

    Mine was supposed to be start 2 weeks after my simulation, but my healing from surgery took longer, so my ps didn't release to start radiation for 2 more weeks. The place thought that they may have to do a new simulation since it has been a month since the original one. The spoke to the dr, and she said a new simulation wasn't needed.

  • Mrsmcg
    Mrsmcg Member Posts: 67
    edited June 2018

    Since the article says Acute radiation skin reaction — aloe vera and hyaluronic acid cream should not be recommended for improving acute radiation skin reaction (grade D). I am wondering what they would recommend using. I don't think aloe does anything but make the area feel cool. When I first started radiation I talked to my RO about what to use on my skin. All she approved for me to use was aloe vera. She stated that she wanted to see my skin turn red. She said that's how she knows the radiation is working. I begged her to prescribe me silvadene, which she finally did, and I discovered gold bold healing therapy cream with some aloe in it that seems to be helping.

    I have heard people mention using green tea. How is that used?

  • Pattimills2017
    Pattimills2017 Member Posts: 41
    edited July 2018

    some aloe has alcohol. The one I got at Wal-Mart does not. It is 100% aloe and alcohol free. I am using emu oil but I'm only 2 treatments in.

  • Pattimills2017
    Pattimills2017 Member Posts: 41
    edited June 2018

    some aloe has alcohol. The one I got at Wal-Mart does not. It is 100% aloe and alcohol free. I am using emu oil but I'm only 2 treatments in.

  • missmelissa90
    missmelissa90 Member Posts: 46
    edited June 2018

    My RO & Nurse have been very specific with me from the beginning that they wanted to make sure that I wasn't taking anything with extra anti-oxidants because it can reduce the efficacy of the treatment and she even made sure that my vitamin supplement didn't have over 100% of Vit. A & D. I've used Cetaphil lotion from the beginning with a thumbs up from my doc, and thought that using Avocado Oil on the outside would be OK, but they gave me the "we don't know if it is helpful or harmful" speech, so I decided to stop until after I'm done. Even though I use lotion pretty liberally all over, I noticed that the skin on my neck, on the non-treatment side, is looking like it wants to peel. I'm wondering that since the skin is an inter-connected organ, even the areas that aren't getting zapped could be experiencing side-effects too? I've never had this happen before, even during chemo!

    Mrsmcg- I would strongly recommend that you get a second opinion about the "getting red to see if it works" when your skin is red it is damaged and I can't believe that can be good for anything! Particularly when there are so many options to help with at least keeping it from becoming painful!

  • Pattimills2017
    Pattimills2017 Member Posts: 41
    edited July 2018

    I was told 2 weeks so calculations could be done. I actually started in 1-1/2 weeks. Thankful.

  • mwaucker
    mwaucker Member Posts: 19
    edited July 2018
    I had my scan on a Monday and my first treatment on Thursday of the same week.
  • Puzzlewoman
    Puzzlewoman Member Posts: 171
    edited July 2018

    I have been in so much pain this week (compared to 1st 3 weeks) on my left side (underarm, next to boob), and this morning I think I figured out why. In the first scans there were no stickers on my underarm, but the last weeks scan I got new stickers which included one there. This morning it fell off in the shower and I looked at it and I have a nasty painful rash (not like the redness/peeling from the radiation). I have fair sensitive skin, so I’m used to getting skin contact rashes from some things, which I have occasionally gotten from bandage glue. I’ve never had anything like that on my underarm though, and all of these other stickers on my boobs and stomach hadn’t caused me any issues, so I hadn’t even thought of this possibility. Now I am putting hydrocortisone on it every few hours, which does help but wears off. Good grief. Only one more, only one more....
  • Valentina4
    Valentina4 Member Posts: 1
    edited July 2018

    I'm 27 of 30 radiations done. When I started ,my radiation oncologist recommended a. deodorant called Native. I bought it online in unscented. It does not have any metal or toxic stuff. I use it on the untreated side for now just because the treated side is so sensitive.I plan to just use this even after treatment done. Good luck!

  • Sweetcaro79
    Sweetcaro79 Member Posts: 31
    edited July 2018

    Pleasantsa,

    I have the same position for my radiation and yes, hold my breath. I dont find it difficult, its only 30 seconds or so, twice. They let me play my iphone music and they also have a big stereo with all kinds of CDs. If you aren't wearing ear buds I dont see what the problem is listening to lusic I can still clearly hear their instructionsand its so much more therapeutic for me!

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