MARCH 2018 starting RADIATION

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  • kaywrite
    kaywrite Member Posts: 219
    edited March 2018

    Hi Billb - traffic is the worst! I live in Brookhaven, so can take the train into town to avoid the I-85 crawl - I'm sure Gwinnett presents its own challenges. This new radiation schedule has me driving from Druid Hills to Emory every day at 1:30 p.m. I have not been sent to physical therapy, but I'll look up Turning Point. Thanks for the tip! Good luck with your remaining treatments and keep us posted!

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited March 2018

    Hello all. Am catching up on everyone's experience after having granddaughter here for her spring break from college. I've had 10/24--16 hypofractionated treatments and 8 boosts planned. 3 "extra" boosts because previously unidentified DCIS was found in surgical specimen and the RO felt the margins were not adequate. At this point I think extra boosts are preferable to more surgery.

    Using aloe gel right after tx and aquaphor 3 or 4 times the rest of the day, including at bedtime. Washing the entire area with Dove soap and tepid water before going for tx. Have not found a cotton bra that works for me(too lopsided) so no bra (had to do this when I had shingles a few years ago) and wearing pima cotton shirts. So far only some light tanning. However, some breast pain. RO says likely inflammation from rads and to take anti inflammatory such as ibuprofen or celebrex. Yes, the aquaphor is greasy but it washes off of me and out of my clothing. It may be in my head but I feel my skin is better protected by the aquaphor. The aloe gel is great after tx because it absorbs so quickly that I don't have greasy fingers for putting on my clothing.I

    Wishing a great weekend for all.

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  • DKK
    DKK Member Posts: 58
    edited March 2018

    Hello everyone,

    Monday will be 10/33 for me and it has not been bad at all. I remember some of you from my

    "Weekly Taxol" group.

    I have the tattoos, they X-ray and I see my RO once a week, and I don't do the deep breath during treatments. I have been using Aquaphor and Calendula lotions. Before I go to bed I slather on the Aqua poor and wear an old loose Cotten shirt. By morning it is absorbed and any redness or stinging is gone. I try to go braless when ever I can,because when I do wear even a soft or sports bra , I get a little redness under my breasts and armpit. I have been looking for clothes to coverup any jingle from my boobs when I wear a camisole . They are so comfortable, but I am kinda large busted and I don,t like the jiggle. Lol!

    I work part time, do my rad. Treatments then visit my mom in a nursing home. She has cervical cancer (even though she had a total hysterectomy). We were both diagnosed last last summer. I do get fatigue but I am trying to stay active. I don't do any other excersise because I am usually pooped by the time I get home, get dinner and clean up.

    Treatments have been going very quickly. Some days I feel like I am running on a treadmill and don,t have time to think about fatigue, but when I crash I am out!

    Two weeks ago I was in the ER with severe stomach pain. Found out I have gall stones. I still have stomach pain daily but not as severe.Having CT scan Tues. to rule out any cancer down there.............Always something, feel like it's never ending..

    So glad to hear many of you are finishing. Best wishes ❤️


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  • Nancy116
    Nancy116 Member Posts: 53
    edited March 2018

    Kaywrite, I'm so glad your second treatment was easier. Those recipes sound really good, thanks. I noticed you were using Aquarphor. Here is a link for a $2 off coupon for the spray.

    aquaphor-spray-coupon $2 off Coupon for Aquaphor spray ladies.

    Veeder, Glad you finally get to sleep in your own bed this weekend. It has got to be so hard to live that far. Enjoy your time home.

    Enjoy your weekend everyone!

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  • Billb464
    Billb464 Member Posts: 62
    edited March 2018

    Praying and hoping everyone has a healing weekend:). I have a thing of aquaphor but haven’t used it yet. I started with the calendula lotion and salve plus what they gave me. I hate to introduce something else at this point😂. One of the ladies that I used to work with said she got burned on the front and her back,😳. I thought about getting some cami’s, but hate to shell out more $$. My daughter said to buy some petals and go braless, lol 😆 I would only need one , since I haven’t finished reconstruction yet. I also have noticed some pains, they’ve been sporadic, plus the swelling , which the RO said was from the reconstruction (alledgelly). I guess like chemo we can count the days down and know the end is in sight. I’m not getting any boosts with my treatments

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  • kaywrite
    kaywrite Member Posts: 219
    edited March 2018

    Nancy - thank you! Take care

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  • Meg101
    Meg101 Member Posts: 175
    edited March 2018

    Kaywrite - Thanks for the quinoa recipe. It sounds healthy and delicious. I think I'll try it for lunch today.

    Veeder - You are such a trooper. All of these cancer treatments are tough enough without having to drive so far, fight traffic, sleep in a motel, and then deal with SEs. It almost seems like they should be paying us instead of the other way around.

    DKK - So sorry you have to deal with gall stones on top of everything else. The fact they found gall stones may mean you can eliminate the pain being from mets. Let us know how the tests go, and especially the results. Praying for you ... and your mom.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited March 2018

    Thanks Meg101,

    I'm all packed (clothing and food) for this coming week! It looks like the weather is clearing up which will make the drive less of a hassle. Another wrinkle though-my mom fell and broke her hip a week ago, had surgery, now she's in a SNF but it's 4 hours away from the Cancer Center/Hotel, and 2 hours away from our house. So, I won't be able to visit for at least a couple of weeks. My brother and sister are there taking care of things.

    I hope everyone has a good week and no skin problems.

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  • Paco
    Paco Member Posts: 208
    edited March 2018

    Hang in there Veeder. Prayers for your mom and you, too.


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  • Veeder14
    Veeder14 Member Posts: 880
    edited March 2018

    Thanks Paco.

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  • FelineMum
    FelineMum Member Posts: 141
    edited March 2018

    Veeder,

    Positive healing vibes for you and your Mom.

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  • flowergal
    flowergal Member Posts: 167
    edited March 2018

    Good thoughts are sent your way for you and your Mom Veeder. Safe travels this week and hope your week goes without any more stress!

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  • Veeder14
    Veeder14 Member Posts: 880
    edited March 2018

    Thanks flowergal and I hope your week goes smoothly

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  • Nancy116
    Nancy116 Member Posts: 53
    edited March 2018

    Veeder, Safe travels and a speedy recovery for your mother.

    DKK, Sorry about the gall stones those are not fun especially with all you are going though already. Hope all goes well with your mother.

    Have a great Monday everyone!

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  • kaywrite
    kaywrite Member Posts: 219
    edited March 2018

    Hi everyone - I'm off to 3/21 today and just wanted to wish you all a good day. Hang in there, Veeder - I'm glad you have siblings to help out with your mom, that's got to be some relief. Now if we could just do something about travel and your own bed!!!! Soon, though. <hugs>

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  • mjb1018
    mjb1018 Member Posts: 170
    edited March 2018

    Hey everyone...Just checking in on this tread for the first time. I had my simulation appointment on 3/13 and start treatment this afternoon. I have been so positive and upbeat about everything since being diagnosed. It's been a roller coaster, for sure, but I'm usually pretty agreeable . :) Last night, I just started to feel kind of apprehensive and anxious. I have no idea why...I guess the thought of going for treatment every single day is daunting. Plus, I'm just coming up on 5 of 12 Taxol treatments...The Taxol has been harder on my than I expected. I expected it to be "easy" compared to everything else so far....Ha ha.

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  • Meg101
    Meg101 Member Posts: 175
    edited March 2018

    Hi mjb - Welcome to our March rads group. I would be nervous too if I were going through chemo and radiation at the same time. Maybe I read your post incorrectly. Anyway, when you start radiation it's not bad at all the first couple of weeks. Chemo is much worse than rads for the most part. I had Taxotere and Adriamycin so I cannot speak from experience about Taxol. I've heard Taxol and Taxotere are similar because they are both taxanes. Personally, Taxotere hit me harder than Adriamycin (aka Red Devil because it's a tough drug), but we all have different reactions to various drugs. Did you doctor prescribe good anti nausea meds and steroids to cope with SEs? Most of us end up dancing between diarrhea & constipation. And then there's the fatigue, brain fog, and taste buds that seem to last longer than the other SEs. Let us know more about how you're feeling on Taxol so we can give you suggestions, and of course sympathize with you. I'm sure you have seen the thread on Taxol. If not, take a look at it. Anyway, I'm glad you found this thread because you're starting the rads journey with us. Are you planning to have 33 radiation treatments or the 21 treatment protocol?

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  • mjb1018
    mjb1018 Member Posts: 170
    edited March 2018

    Thank you Meg! Yes, I've already gone through Adriamycin and Cytoxan, 4 cycles. Since I expected to feel bad during AC, it was easier to go with the flow. I guess I just thought I'd breeze right through this Taxol phase. I'm getting Herceptin, too. 12 weeks in a row of this, then will just drop off to Herceptin every 3 weeks for the rest of the year...My MO did say that my skin will be more prone to SE since I'm on Taxol at the same time as radiation. My rads will be 5 days a week for 6 weeks. I thought I only had to be prepared for skin issues, but now know that ongoing fatigue may be a SE of rads, too. One day at a time! :)

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  • Nancy116
    Nancy116 Member Posts: 53
    edited March 2018

    Well I'm on 5/30 and feeling some burn today, which I really didn't expect until at least week 2 or 3. The only redness is on my incision area but it doesn't burn there, which is weird. I put some aloe on straight from the plant and sprayed my aquarphor and it has calmed the burning. 25 more to go. Hope everyone is having a good day.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited March 2018

    Thanks kaywrite and Nancy116,

    Thanks for your replies. We traveled 1.5 round trip from home to another location so I could see my regular ENT. Got treated with nostril injections to open up my sinuses, these allergies are driving me crazy. Plus windy weather is blowing around the flower petals, pretty but not great for seasonal allergies. Then our usual drive to the hospital. I was so exhausted when we arrived I sat in a chair and slept since our hotel room wasn't available. I know these treatments may cause fatigue but I would guess if I was being treated without leaving town I wouldn't be real tired.

    Today was 13/21 and real easy and fast. Tegaderms replaced again because they come off so easily. I guess it's the lotions and not being able to use hot water to wash with so they don't stick to my skin long.

    Nancy116,

    Does your skin feel warm? I haven't noticed warmth yet but my skin seems to get darker hours after the treatment, not right away. I continue to put on calendula cream 4/day. I'm waiting to see if I get burned but so far just pinkish except a little red on my nipple area. It seems like the key is to keep putting on the lotions even if your skin doesn't seem dry.



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  • Meg101
    Meg101 Member Posts: 175
    edited March 2018

    mjb - There is definitely a cumulative effect with chemo. With each round it may take longer to bounce back. You are being hit with a lot of chemo so that might add to the impact. It appears you are staying positive and staying the course. That is admirable. Adding to all of that, you're starting rads. If you aren't feeling fatigue after all this, you must be the bionic woman.

    Be sure to increase your protein intake while going through radiation. That advice came from some of my chemo buddies who were a month ahead of me with treatment. So far I have not experienced fatigue with rads, but it's still early in the process. Today was my #8 of #21, and I feel great, not tired at all. Your mileage may vary especially because you are doing chemo and rads at the same time.

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  • Meg101
    Meg101 Member Posts: 175
    edited March 2018

    Nancy - I've heard that the aloe from the actual plant is the best because it doesn't contain other chemicals. I'm glad your doing well so far. You mentioned you are a little pink from today's treatment. So am I. It doesn't feel warm yet, but maybe it will later this evening.

    Veeder - I'm glad you got some relief for your sinuses. Allergies can be such a beast. They can make you ache all over, not just the sinuses. You probably wouldn't be so tired if you didn't have such a long drive and could sleep in your own bed. Add that to your allergies, it's no wonder you haven't felt well. And then there's your mom...

    kaywrite, FelineMum, Paco - You all seem to be doing OK. Keep on keeping on ;-)

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  • FelineMum
    FelineMum Member Posts: 141
    edited March 2018

    Nancy116: I had 4/25 yesterday and last night I noticed a faint tan. I went to look because my skin in that area felt warm. No redness or pain, but it was surreal seeing the area I'd asked a tech to point out for me (so I'd moisturize the right place) looking different. I hope it's not permanent because it goes up to my shoulder and across above my collar bone. There are worse things, of course, but I'd rather worry about the trivial ones.

    I wanted to use spray Aquaphor, but the ingredients include alcohol (butane?) and when I've used it, somehow my bathroom floor gets more slippery than an ice rink. I'm using emu oil, aloe vera and regular Aquaphor. I bring the aloe to the treatment center and slather it on in the dressing room afterward. It absorbs much faster than the other two.

    Mjb1018: Wow! That's an intense regimen. One day at a time ... good advice too.

    I've been upbeat through this too. When I've had moments where I feel overwhelmed, most of the time I didn't know why. Like, there's nothing new so what's going on? But getting ready to start rads put me in a funk. I worked through it. Making my own "hospital gowns" helped. They're just T-shirts with the back cut open and ribbons sewed on for ties. But they're so much more comfy than the gowns at my center and the techs seem to like them, even saying they try to guess which shirt I'll wear each day. They may just be being nice, but it's something to talk about.

    Meg101: How are you doing? I hope well!

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  • metoo2018
    metoo2018 Member Posts: 64
    edited March 2018

    You are all amazing trailblazers. I had my simulation yesterday - it went well. Got 4 tattoo's and only one sticker where they said adjustments may be made later. Much better for washing than all the stickers from the planning session. The techs were great. Today starts the real thing, I only seem to get anxious whenever I am near a machine - been very positive and appreciative that my journey has been much easier than many. I don't feel nervous at all (ever) until the machine comes close and I begin breathing very quickly. I'm sure I will get used to it all - it happened every step of the way since the MRI machine. It could be much worse so today I will make friends with the machine once and for all!

    Continued good wishes and hugs for all of you on this journey - hoping it is a better week for all of you!


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  • Paco
    Paco Member Posts: 208
    edited March 2018

    Had my "dress rehearsal" today, more x-rays, more manual manipulation on the table. I did not have a mold made especially for me so I guess every single time will entail the tugging and gentle prodding to get me positioned. The enormous radiation machines are intimidating but I can tell already that the women there for their therapy at the same time as me will be my sisters and that is very reassuring. All my marks washed off, leaving only dot tattoos but the tech made a quick swipe with the green Sharpie and got them back on.

    Good luck today Metoo! Tomorrow is day one for me. I can't wait.

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  • kaywrite
    kaywrite Member Posts: 219
    edited March 2018

    Paco - Good luck tomorrow! I told my team yesterday the radiation machine looked like the Starship Enterprise. It makes me dizzy, moving all around me while the table is also moving, so I close my eyes.

    metoo - Good luck today! It gets easier. On the rads machine, I close my eyes, they tell me when to hold my breath, when to release, I count the # of "shots" I get (five), then it's over!

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  • Nancy116
    Nancy116 Member Posts: 53
    edited March 2018

    Veeder, Felinemum,Meg101, Thank you. I used my aloe plant and by the end of the night it felt way better. Today it's just a little sting on the front of the armpit. Felinemum, If the tan stays just think of it as a battle scar from a fight you've won. I also love your t-shirt gown idea. However I would use velcro, it's to hard to tie the strings some days.

    We all have our complaints (which we have every right to) but in the end we are all still here. I feel very thankful for all you on these threads, we have each others backs like no one else can. I have been very fortunate not to have chemo but for all of you that have to go through both chemo and rads, you are Warriors in my book!

    Metoo, Good luck today!

    Paco, Good luck tomorrow!

    Hope everyone has a pain free day! Gentle hugs

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  • mjb1018
    mjb1018 Member Posts: 170
    edited March 2018

    Metoo and Paco...Good luck on your first session! My simulation appointment was easier than round one! I was there for an hour and a half for my first treatment yesterday. They said it would be long...Just to make sure the plan all lined up. Ha ha. Then, of course, I got an itchy nose! That was the worst. #2 today was easy. In and out. Paco, I did have the mold made, but the techs still shift me around to get everything just right. I got 3 tattoos at simulation and one more yesterday. Plus, all the sharpie road mapping. I got dressed this morning with a scoop neck T...Hmmm...that'll never do for a while. The marks go up my neck. I just turned my shirt around and was good to go. Hugs to all!

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  • Veeder14
    Veeder14 Member Posts: 880
    edited March 2018

    Nancy116,

    Your welcome. I met someone who had the radiation tan and said eventually it fades many months later, or at least it did for them.

    I'm finding several women are just wearing sweat shirts that unzip all the way or shirts that unzip all the way instead of putting on a gown. I think I'll try that tomorrow. The Radiation Clinic is in the basement of the building and it's really cold so want something on my arms while waiting for my app't.

    Had a meeting with the doctor who said my skin was just the right redness for number 14/21. It does feel hot or painful. He said to lotion up 5-6 times per day. Wed and Thur are regular treatments, Fri is a holiday!! 5 boosts next week. I'm finally not stressing out everyday before I go in the treatment room.

    I met quite a few ladies this morning waiting in the locker room. Very thankful that I am only having 21 treatments and only to the breast. With some patients with very aggressive cancer they use something like a mirror with the treatments that the radiation bounces off of to make it even more powerful. That woman said her skin is a mess and she's very miserable. Then another woman went through standard radiation treatments and is scheduled for another month long round at a different hospital that only has a specific machine that our hospital doesn't have. Also, met a lady this morning having radiation to the belly button area who had cervical cancer that spread to other organs and the doctors couldn't remove it all especially from the liver, etc., which was scraped. An extension of the tumor that is now in her belly button area and she can't have anymore surgery. Plus has been having radiation and Chemo for the past 4 years with no end in sight. The most heart breaking is a 2 year old that has treatments (in a different area of the Unit) but is there everyday with his parents. UGH. So glad my situation is uncomplicated.

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  • petey111
    petey111 Member Posts: 183
    edited March 2018

    mjb1018 - I totally feel you! I got really nervous after my initial consult too! And to be honest....when I got to treatment #5 of Taxol, I kind of had several bad days. I felt ticked off at all the people who said Taxol would be easier when it wasn't...at least not for me. I was really sort of down by the time I finished Taxol - and I stopped 3 treatments early because of the neuropathy. That added to my stress of starting radiation. So don't worry about your feelings...they are so very normal! Hang in there. I know it's hard, but there will be an end to it!!

    It's is much harder to keep up with this thread than chemo! You are all so busy! :-) I do read everything, even if I don't respond to it all.

    I see the doctor tomorrow. I am hoping when I say I'm starting to get just a bit sore, they will give me aquaphor samples and I won't have to buy any! LOL I'm so cheap. I did some research on getting some pure Aloe. It's hard to get pure aloe in a gel, but I found one that was a good compromise between mostly pure and not too expensive. It seems to help a bit with the stinging.

    7 down, 26 to go!

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