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June 2020 radiation group

12467…12

Comments

  • toria1212
    toria1212 Member Posts: 71

    Today was day 6, much, much better than yesterday...except that the radio on in the treatment room seems to play more talking commercials than music. Like I said, it takes "two songs" and today it was jibberish and half a song. I try to pray during, but honestly I have anxiety and even my prayers(Our Father, etc) get jumbled up in my head.

    I also had to give 8 tubes of blood(later in the day, I had to drive back for lab appointment) and she could not find a vein, so first used a pediatric vein as it's more narrow, then did my hand. She was sweet and talked with me the entire time. I do not like my MO, so I am glad I did not run into her during that, but I think I heard her voice once-she's abrupt and no nonsense.

    Yesterday I was simply a. hot. mess. Today I ran errands with my teen-age daughter, bookstore, natural market for supplements and carry out mexican from organic mexican place. Then we popped in on my oldest daughter and 4 year old granddaughter for a bit.

    I am either completely obsessed with researching, or I am busy doing other mom stuff. I need to balance out my mind, so that I don't lose it.

    I need to write a long description of my two zoom appointments with my integrative oncologist. But I am too wound up to sit still to do it.

    The sweet thing is that my two daughters have surprised me three times this week with a little gift bag on my bed with a card with a Bible verse written on it. I have received a journal(for writing my meals, meds and exercise), cute paper plates and coasters, and today a cute pink stuffed owl. My heart is full.

    I pray for all of us daily...you're all in my heart xx

  • grdngrl505
    grdngrl505 Member Posts: 33

    I'm on treatment 9 of 25 and I go in at 8 am. I had the bolus on today. I asked the tech why I wasn't doing breath holds today and she said it wasn't on my treatment plan. I asked the RO and he said I should have been doing deep inspiration breathing so he's going to speak with the tech.

    I had a good appt with the RO today. I asked about getting a copy of my treatment plan since I feel like I'm in the dark about what's going on. They'll have a copy for me tomorrow when I go in. He explained why they were using the bolus and it's mainly to target where my mastectomy scar is because the likelihood of a recurrence there is higher. I promptly forgot the other things he mentioned about the bolus and the use of tangents to target to the treatment. I started having underarm tightness, too so he mentioned doing child's pose in yoga and also walking my arm up against a wall and leaning into it to get a stretch. Asked for a referral to PT from my BS office.

    cyathea, I'm not having IMRT either, but having 3D CRT also. The RO said he's seen better results with it than IMRT even though IMRT is a newer technology. It's also less expensive.

    Hang in there everyone!

  • Ohthatcat
    Ohthatcat Member Posts: 16

    hi all, I left for my radiation appointment early because my kid was driving me nuts 🤣🤣so there’s that!

    So I know some people may be wondering about imrt vs the standard kind. I asked my RO because I was changed. For me, I guess I have a freakishly long torso for my height hahah (I’m 5’3 with an inseam of 27 if that helps lmao) so they had to change up the treatment plan. My lungs would have received over 50% of the recommended dose of radiation so clearly that’s not good lol. It’s the same exact dose, treatment area, etc. just a more expensive and complex procedure.

    I can’t remember if I already explained this or not. My brain doesn’t work anymore so I’m sorry if I did!

    Quarantine in NJ started RIGHT as I was finally recovering from surgery. Like I said, I had an extremely protracted recovery. By the time it healed, they told us to stay inside. Wonderful lol.


    I admire those of you who force yourself through daily living. I have just wanted to hypersleep through this and have just been paralyzed. I can’t wait for this to be over. Radiation is my last step.

    Thank you for listening

  • BCat40
    BCat40 Member Posts: 121

    I stand corrected and found out I am having 3D Conformational as well, not IMRT. I saw the moving metal leaves in my machine and thought it was IMRT, but apparently both types use the leaves. https://www.oncolink.org/cancer-treatment/radiation/introduction-to-radiation-therapy/radiation-therapy-which-type-is-right-for-me

    Ohthatcat, I am in NJ too and barely squeaked into my surgery before they essentially stopped cancer surgeries. Then I had an 8-9 week break before starting rads, which was about the same lockdown period before hospitals re-opened for non-emergency treatments. Due to Covid I lost my job so I don't have to push myself through work during all of this. Which is sort of good but bad for my bank account. I am doing some job applications as required to collect unemployment but am not really pounding the pavement for a new job until I'm done. I think it would have been a real hardship to fit in the daily rads treatments and r/t travel with a full time work schedule.

  • toria1212
    toria1212 Member Posts: 71

    Hi friends,

    Number 7 in the books for me. Today it was about THREE MINUTES. (two half songs...) lol, and I asked her why so short? She said they did not do x-rays today, s they do them twice a week. My first thought, was "WTeverluvinF?" WHY do they need x-rays=MORE radiation? I will ask on Monday with meeting with RO, but does anyone know?

    I am totally babying myself, as I sleep poorly(five hours last night but straight through, even though I know I'll be dragging) I watched 7am daily Mass, put a pot roast in, and am doing self-care today-ie, window shopping on the Net, and feet up.

    My integrative oncologist and I spoke yesterday-she recommended raw manuka honey in hot lemon water 45 minutes prior to radiation, and 15minutes(or asap) after to coat the esophagus to prevent short term reflux issues. I did it today and quite liked it actually. Was soothing and tasty. I drink more water now than ever. I have a very weak bladder(had bladder surgery a few years ago. I attribute most to having BIG babies, 2 well over 10lbs, first one close to 10). And she recommended NO DYE, NO FRAGRANCE soap which I grabbed at the natural health market yesterday. Shower before AND after, using tepid water after. Then a concoction of vitamin E oil, pure aloe and radioflex(need a script) so I am using CamWell(recommended here, very pricey though) and I put all three in a little glass bowl then mix up with my finger and put all over breast up to clavicle and into armpit. Praying it keeps me from burning.

    I am having shoulder blade pain, my legs are very dry, and I am fatigued. But yesterday my spirits lifted and today I am not an emotional wreck just yet.

    I send all of you BIG (((hugs))) and think of y'all so often throughout my day. Sure wish we all lived on a stretch of beach together...would be much easier to have understanding hearts nearby.

    Blessings on your day, friends....xx

  • cyathea
    cyathea Member Posts: 340

    BCat40 I hope that you can find a job when the time is right. ((Hugs)) I’m definitely finding that it is hard to work in the afternoon. My energy level and ability to focus is much more challenging later in day and by 6 pm, I’m done. This is week 3 for me and I wish I only had to work in the mornings.

    I just had my simulation done for my spine. The procedure is different than my breast simulation. It’s like a whole body hug. There is a whole body bag under you and then they put plastic on top and suck the air out of the body bag and the clear plastic. This is to keep me from moving or breathing too deeply when they do the radiation.

    My simulation took less than an hour but the tech told me that it can easily take two hours in some cases.

    I’m glad I’m not claustrophobic as I imagine this “Foodsaver” treatment could be difficult for some. For me, it felt pretty good, a little like being in a massage chair. The only thing that felt a little annoying was that I have neuropathy in my feet From chemo and it doesn’t feel very good to have the tightness there. But my toes are mostly numb so it wasn’t too bad.

    Hey sisters! It’s almost Friday. 🙂. Hang tough

  • Ohthatcat
    Ohthatcat Member Posts: 16

    food saver hahaha 🤣


    actually, I get X-rays every freaking time. I mean...isn’t that dangerous, too??? Cancer treatments are so confusing!

    I’ve also been eating like crap this go around I mean. Ice cream for dinner every night has calcium, right???

  • BCat40
    BCat40 Member Posts: 121

    cyathea, wow, what an interesting contraption for the spine treatments! Good to know they are doing everything possible to get the radiation to the correct area without harming surrounding tissues.

    The x-rays people are having are called port films and they are to double check the radiation is going to the correct spot. The amount of radiation you get from the x-rays is supposed to be calculated into your total treatment dose. I have only had 2 sets of films so far in 3 weeks. I guess the frequency will depend on how often your doctor thinks there might be changes to the tissue.

    https://www.verywellhealth.com/understanding-radiation-therapy-port-films-430382

    Ohthatcat, you deserve the ice cream. I have decided that I am entitled to cupcakes from the bakery near the hospital at least once a week during treatments. :)

  • cm2020
    cm2020 Member Posts: 530

    Ohthatcat. I'm with you, if I could just sleep until this is over I would. So far I have been able to push through but it is getting harder by the day. Yep, I am daily x-rays too....sigh.

    toria1212. Did you RO say it was safe to shower twice a day? Mine specifically says to only shower/bathe once a day. My RO also gave those same recommendations for soap. I miss my good smelling soap. I get daily x-rays so my time on the slab has increased quite a bit. My marks keep coming off so they have to use x-rays to find the correct placement for radiation.



  • cm2020
    cm2020 Member Posts: 530

    BCat40. Thanks for the link about port films. I hope they re-calculated my radiation now that I need x-rays every darn day. Cupcakes....yummy.

  • BCat40
    BCat40 Member Posts: 121

    cm2020, that seems so inefficient to have x-rays every day. Did they give you the option of tattoo markings? I initially didn't like the idea but they are super tiny, they don't bother me at all. I get lined up by the tattoos for every treatment.

  • cm2020
    cm2020 Member Posts: 530

    BCat40..No, they didn't offer me tattoos. They don't offer them where I go. It wouldn't bother me so much to have the daily x-rays but it comes with a lecture on not letting the marks fade. This morning I just started crying when they started in on me (they are nice about it but i am over it). Every single damn day I tell them that I am careful, don't put lotion on them, don't rub the wash rag on them, and further more that I sleep on my stomach and have hot flashes all night long. This is beyond my control. The one guy tech wasn't in the room this morning when I cried and went over it AGAIN (seriously, every single day I tell them ALL of this), and as I was leaving he told me to be more careful to not lose the marks. I almost lost my mind. When I get super frustrated I have 2 reactions........cry or scream. Since I won't scream there, I am down to crying every time they bring this up and treat me like a naughty child.

    Seriously, radiation can't end soon enough. I hate every single thing about it (except the super cozy heavy awesome robes they have for me to wear and warm blankets....but neither are worth it).

  • BCat40
    BCat40 Member Posts: 121

    cm, wow that is so frustrating! If it were me I would probably email my RO and tell him/her this and that you are sick of the lectures. There must be a better way if they're not going to do the tattoos.

  • ajminn3
    ajminn3 Member Posts: 284

    cm2020- My place doesn’t do tattoos either, but they told me not to worry if the marks get washed off everyday. I’m sorry they lecture you. That’s so frustrating. Dealing with cancer treatment is enough. We don’t need lectures on top of it

  • cyathea
    cyathea Member Posts: 340

    cm2020, I am so sad that you have to deal with lectures. You shouldn’t need to endure that. I had stickers over my Sharpie marks for 5 weeks before they decided to replace them this week (only one under my arm was coming a bit loose.) I put lotion on mine, I have hot flashes at night, I use Dove soap in the shower and they still stay on. I think you should tell them to find a new supplier for their stickers. You are not the problem in this situation. Maybe the stickers are from an old supply and they are losing their adherence or maybe the product is cheap and they should buy something that works

  • cm2020
    cm2020 Member Posts: 530

    Thanks for the support over the marks coming off and the reaction of the radiology techs to it. I appreciate it very much. It is so nice to have a place where people get it and understand exactly what we are all going through. I have tried to explain to my husband, but, well, he just doesn't understand (though he tries). You guys made me feel better and also made me feel heard. That helps more than anything.

  • toria1212
    toria1212 Member Posts: 71

    @cm2020.....I am sorry! Like you, I hate my 2 hours every morning devoted to radiation. UGH. I have had marker marks on my sides(looks almost like a flower design) and they washed away at some point, but no one said anything to me. I do have the tats though. My one tech, Sherry, is the sweetest, and I tell her so every day. LOVE her. The blond(don't know her name) is quick with me. Why? Why?

    I blew my healthy eating today, all at once with homemade chocolate chip cookies, then pizza, after eating very healthy all day. Back on the horse tomorrow...

    (((hugs))) to my radiation pals. Praying for us all xx

  • grdngrl505
    grdngrl505 Member Posts: 33

    Hi, does anyone's treatment area feel like it's on fire? And has anyone experienced skin reddening or darkening very suddenly? I've been moisturizing a lot. My acupuncturist put arnica cream on my underarm and had me apply some on my treated breast because of the redness.

    Thanks!

  • Ohthatcat
    Ohthatcat Member Posts: 16

    I’m here for my 5th tx, wrapping up my first week. I love reading these posts. I am starting to get tired, and my shoulder has intermittent cold sunburn pain off and on. It’s starting to turn pink under my arm.

    Luckily, my center is only 7 mins from my house! The farthest I’ve had to travel is 15 minutes. I mean, if I had to pick a place to get cancer I guess this would be it hahah.

    I have 8 tats and keep asking when they’ll do more, but instead I keep having stupid paint on me.

    I have four treatment fields. Does anyone else

  • Ohthatcat
    Ohthatcat Member Posts: 16

    ugh. Today was like almost six songs :( those xrays and being marked each time despite tattoos sucks! Today was also bolus day. I get it every other day. I’m not sure why. Does anyone else? I may have asked but forgot...that happens so much anymore!


    so this wraps up my first week. I am getting so tired. I told the nurses and they said “yeahhh that’ll happen unfortunately.” So at least I know I’m not crazy!


    how’d you all do? Looking forward to hearing from you.

  • cyathea
    cyathea Member Posts: 340

    toria1212, I hear you. There have been a few days when I can’t resist having pizza or chocolate, so I eat it....then I try to do better the next day. Lately, I’ve been tracking my food with an online tool just to keep me mindful. It helps. I try not to blame myself (too much!) when I go over my calorie goal. I try to focus on the weekly average being where I need it to be, especially trying to keep my protein intake high enough to help fight fatigue.

    grdngrl505, yes, my treatment area sometimes feels hot (especially right after treatment so I put refrigerated aloe vera gel on the area immediately to cool it). I also get burning pain, which is related to nerve damage caused by the radiation forming scar tissue on the nerves. My physical therapist does massage on my arms and that really helps (as do the stretching exercises). Having completed treatment #15, my skin is very red and my nipple is much darker compared to the non-radiated left side.

    Ohthatcat, so happy for you finishing your first week. I’m dancing right along with you!

    Today I learned that I only have 1 more photon treatment to do. (Yay!). Starting on Tuesday they will do 4 electron radiation treatments that focus on the tissue near my mastectomy scar. It is done on the same machine that is doing my current treatment. The tech said that the electron treatment is not as “deep” as the photon treatment. Is anyone else having this done?

    I don’t know how many fields I am having done, but today I counted my beam “buzzes” (one one-thousand, two one-thousand). It went something like this: 16-3-2-2-12-14-2-2-3-2-3-12. Counting and trying to remember the sequence definitely took my mind off the treatment. I’m not sure I remembered it correctly (that’s a lot of numbers even without chemo brain!). LOL

    I hope everyone has a great weekend

  • toria1212
    toria1212 Member Posts: 71

    Hi my precious rady pals,

    It's interesting reading about the nuances that make are treatments a wee bit different at times. There was a major traffic jam(I am 21 miles from hospital) and so I got anxious and called and nurse said "no problem", I arrived only several minutes late. Today-90 seconds!!! I swear start to finish I was on the table 3 minutes. She said usually xrays Mondays and Wednesdays(strange that they don't share those things with you, the patient) My nipple HURTs hurts, like wounded. Anyone else? It hurt before rads tho....also, breast is definitely a little pink, but it was anyway.

    I finally found my surgical pathology online, so much research etc. I try to have 'bc free' days where I just am a mom, and a Victoria :) The brain gets CONSUMED with all of the information.

    My youngest two(14 and 16) went to their dad's, hopefully til Sunday. That means peace, quite and a clean house! I am grateful

    Always praying for y'all and praying for blessings for your weekend, my friends xx

  • cm2020
    cm2020 Member Posts: 530

    I completed day 8 today. My breast is tender and getting tan (nipple getting darker too)but not red. However, a couple hours after I got home the fatigue hit me like a brick wall. I can't hold my head up and even thinking is hard. This is not like anything I have felt before. Today is my youngest child's 16th birthday. I blew my whole food plant based clean eating right out of the water. Though I didn't eat as much as I typically could....truly radiation has zapped my appetite (which I admit I am not complaining, I desperately am trying to lose weight), I still ate way too much and feel like crap from it--on top of the crushing fatigue.

    Thank goodness it is Friday. I am very much looking forward to not having to go to radiation for 2 days. Oh, someone said their place is close, mine is too. It takes less than 10 min to get there. Tuesday I have another CT scan for mapping for the boost I will get after whole breast radiation is done.

    I like reading your stories and hearing how you are doing. Enjoy radiation free weekend! I hope everyone can rest and take it easy.

  • toria1212
    toria1212 Member Posts: 71

    @cm2020- In addition to healthy eating, (I'm trying fervently to change my ways), I blew it two days in a row, so I feel ya sister. Cookies yesterday and today, even ice cream today. I'm dying for a glass of wine, too... happy birthday to your baby. How special!

    I have had a little more energy the last three days. Hoping the weekend break feels GOOD for all of us.

  • grdngrl505
    grdngrl505 Member Posts: 33

    cyathea, thanks for the tip about the aloe vera gel. I will go pick some up. I start PT this week. It was on hold because of COVID so I'm looking forward to having some more range of motion. I can't count my breaths and hold my breath at the same time. LOL, so I don't know how many seconds I hold my breath for.

    cm2020, I've been bad about keeping to my whole foods plant-based diet the last few weeks. I went and picked up chicken enchiladas and a chicken burrito yesterday. They were delicious.

    Wishing everyone a great weekend! Hope we can all get a little rest. I know how tiring it is.


  • toria1212
    toria1212 Member Posts: 71

    @grdngrl505 Enchiladas and burritos sound yummy! I am mixing aloe vera gel, pure vitamin E oil and creme given by doc's office-only 8 treatments in but so far ok.

    I tried my best to sleep in, in and out of sleep more like it. But having a languid morning. It's too warm here to do anything outdoors!(90+)

    Love to all xx

  • ldowns99
    ldowns99 Member Posts: 5

    Hi All. Just had my simulation appt. yesterday with field verification and first treatment scheduled for July 2 (4 wks./20 treatments). Today, I'm getting these weird "zingers" of brief discomfort/pain on both sides that feel like it's happening under my rib cage. Has anyone else experienced this? Not sure if it's from laying on the hard table for so long during the CT scan and other prep or from doing all of the weird breathing I'm not used to (I have to use the SDX device/breathing technique for being treated on my left side). Never felt this before, so I'm assuming it's from something that happened yesterday. Any ideas? Thank you!

  • grdngrl505
    grdngrl505 Member Posts: 33

    ldowns99, sorry to hear that your simulation appointment left you in such pain. Haven't experienced any rib pain. Hope you're starting to feel better.

  • Ohthatcat
    Ohthatcat Member Posts: 16

    hey all. 6th treatment down. I just met a lady who completed her radiation with no side effects! How?!?


    The one thing I’ve had is a constant burning feeling in my trapezius area. It’s like that cold sunburn I described earlier, but inside the skin I’d that makes sense. It’s really uncomfortable. Has anyone else had this?

    Hope you all are doing okay

  • toria1212
    toria1212 Member Posts: 71

    Hi all,

    I had an upset stomach from 6am today on. When I called early, we rescheduled for this afternoon, but I am still feeling wonky so no treatment today. Just add another on at the end... I had a kale,brussel sprout, broccoli, asparagus salade with salmon last night. Me thinks it was all of the roughage? Otherwise, I'm fine.

    Hope everyone relaxed over the weekend!

    Welcome to @ldowns99. I'm sorry you are suffering. Hoping your first treatment goes well for you.

    xx

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