Dec 12, 2018 01:41PM Wised wrote:
Newhomes and Joy, best of luck today! I hope it all goes smoothly for you.
Hugs to you, Dani!
What to expect from treatment and ways to cope with side effects.
Posted on: Nov 20, 2018 04:28PM
I don’t think anyone has started this group yet, so here goes. Anyone else doing this over Christmas?
Posts 151 - 180 (516 total)
Dec 12, 2018 01:41PM Wised wrote:
Newhomes and Joy, best of luck today! I hope it all goes smoothly for you.
Hugs to you, Dani!
Dec 12, 2018 02:35PM - edited Dec 12, 2018 02:41PM by egregious
Hi Pebbles, WOOHOO! Way to GO! You did it! Congratulations on finishing your rads. Hope the path ahead is smooth for you.
Spoonie, hope you're feeling better soon. You've had a difficult time.
Salamandra, I had a little nausea as soon as rads started. Comes and goes. I feel better eating a few crackers, just to keep something in my stomach.
Joytxs, good luck with your first rad today! You can do this! It gets much shorter after the first day. Re the TV in the waiting room, sometimes those TVs mysteriously get the volume turned down whenever I'm around. Can't hurt to try.
Newhomes, how did it go today? It's scary at first and then it will become more routine. You'll be in our Don't Want To Do This club, but it will feel more normal.
Welcome, librarygirl! Hope things go well for you. Hope the PT makes your shoulder better.
Ghostie, how was it seeing your granddaughter?
Wised - what's it like to be finished? Hoping your skin is holding up ok.
Hugs and good wishes for everyone here. We can do this.
Dec 12, 2018 04:01PM Nomaddd wrote:
Hey ladies, my first time posting here as well. I will be starting my radiation therapy this Friday on the 14th for a total of 20 treatments. I do orange theory classes 4x a week, not sure if I will be able to continue that rigorous of a regime with radiation. I will try my best to continue as usual but we will see how my body reacts. Is anyone here still able to continue with their regular exercise regimen?
Never in a million years I would think this is how I would be spending my xmas and NYE holidays this year. I had a great diving vacation planned mid December that of course had to be postponed. I go between deep gratitude for having an early stage diagnosis and anger and sadness of being diagnosed at all, especially at an age where my friends are still having lots of fun, get to drink, socialize after work, and so on. I feel like I got to hit the break on living however I wanted to too soon. Thanks for letting me share 😘
Dec 12, 2018 04:34PM Dani444 wrote:
Nomadd, welcome to the thread! I understand the roller coaster of emotions, and it does suck being here at all. I am grateful for this forum and all of the support on here!
I also wanted to hop back on and say I have found the dreamiest camisole. My coobie bra was irritating the heck out of my drain path scar and it gets more irritated after rads. I treated myself to an Ana Ono camisole with a shelf bra. It is super soft, and no seams. The shelf bra sits on the outside with a pretty lace trim so it does not rub on my scar. I went up a size for comfort during rads. They are pocketed as well for a prosthesis, and could be reimbursed by insurance if you have your RX. It also has adjustable straps so I can give my natural breast a little extra boost up :)
Dec 12, 2018 04:40PM Nomaddd wrote:
Thanks Dani444! I do love this forum and the thread as well. Having a group of awesome women making the best lemonade out of the lemons we've been given really lifts me up.
Nice on the camisole!:)
Dec 12, 2018 04:46PM Wised wrote:
Hi nomadd, I wore cheap cotton camisoles for the duration and it really helped keeping the irritation at bay. I found that the most challenging part of radiation wasn't the SE's but the way I felt about being exposed every day to strangers. It was emotionally difficult. I really dislike being vulnerable, it has nothing to do with modesty. Keep reaching out to us and others for support, we're here and we get it!
Dec 12, 2018 05:06PM DeeBB wrote:
I hear ya Nomaddd. Sorry you have to be here. I work out regularly typically bike or treadmill and some weights every other day but nothing rigorous. It seems to help me, I have some fatigue now (I just finished 8 of 20 treatments) I just do it when I get home from work, while my husband is making dinner. I really haven't changed too much of my schedule, luckily for me my appointments are first thing in the morning and I'm usually in and out in 15 minutes or so, then I head to work. Honestly the first few days were the hardest for me because I just couldn't believe I was having to do this. My dad came down for the first week and that made things easier. Even though this is only my second week, it hasn't been to hard to fit in with my schedule. Are you close or do you have to drive quite a distances?
Dec 12, 2018 05:12PM - edited Dec 12, 2018 05:15PM by egregious
Re exercise, I had been walking 1.5 miles a day, and most days am still able to get most of that (maybe 1.3, then too tired to do much more). But I'm a lot older than you are. Maybe you could do most or all of your regular routine. Try and see how you feel.
It would really help if I only had to do one hard thing every day - the walk and the rads on the same day seems excessive :)
It is important to do your shoulder and neck stretches especially on the side of your treatment. Wishing you good luck with the path ahead.
Dec 12, 2018 05:27PM AliceBastable wrote:
Men's tank-style undershirts are comfortable and you don't have to worry about getting Aquaphor or other moisturizer stains on them - just use them for rags afterwards.
Dec 12, 2018 05:52PM Nomaddd wrote:
Great idea on the men's undershirts for comfort. I take the subway to Memorial Sloan Kettering. 15 min walk each way from the last stop to the rads place and back so automatically I will be getting min half hour brisk walk a day👍💪😀 They are usually in the morning, am hoping to do my OT classes at noon before I potentially get tired in the afternoon. I changed my lifestyle significantly after dx. Much more exercise, much less wine, much more broccoli and kale and such and mostly plant based foods. Protein from fish and lentils, etc. I actually feel amazing with all these changes, too bad it came with cancer:) Sucks.
Dec 12, 2018 06:26PM ghostie13 wrote:
Had a really fun afternoon book shopping and then a Mexican restaurant for lunch. My wallet is a whole lot emptier now...lol....but I don't mind. We always end up with a stack of books and some odds and ends we think we can't do without plus I did find a few things for Christmas gifts...
Salamander.....I hear ya on the stomach issues. I have had heartburn since day 1. So far Zantac is keeping it under control, but I probably shouldn't make the Mexican food a habit. I also seem to get full right away and then just feel too tired to eat in the evenings. The fatigue seems to kick in around suppertime which doesn't help.....
Is anyone else starting AI's in January?? I'm dreading it like there's no tomorrow..... We should start a thread when it gets closer so we can all stay in touch and see how the next phase of treatment goes.
Dec 12, 2018 07:32PM PurpleCat wrote:
Hi Nomad - I can relate to the emotions you described. So thankful it was caught at an early stage, but it's such a disruption. I just want my old life back.
Not AIs, but tamoxifen. Also dreading it, but trying to be positive.
8 done out of 20. My skin is definitely starting to turn pink.
Dec 12, 2018 07:58PM PebblesV wrote:
ghostie13, salamandra, purplecat, egregious, dani444 - thank you for the congrats! You ladies are AWESOME and make that final days of rads so much more celebratory!
ghostie / purplecat - yup, I'm starting tamoxifen next and dreading it as much as you ladies. I like the idea of starting a thread to help us through it! I meet with the oncologist on Friday so I'll know more about timing then, but likely will start in January - slight delay because we are going to do one more cycle of pulling eggs. So going through that too.
I'm with you where I'm trying to be positive about it, and hopeful that I can minimize the SEs like I did with radiation, but I'm frankly more worried about SEs with this one. I think because I have skin that tans easily, I knew the odds were in my favor on getting through radiation with little to no SEs and I did that. However, there are so many variations of what could happen on the hormone therapy and honestly I change my mind daily about whether I want to do it or not! I think I will have to for the sake of my family... but still...
cherryi3 - OMG love that the screen name is related to your "ugly cute" dog.
dani444 - I'm amazed that you are doing 12 hour shifts after radiation! I am working too, but working from home. Oh, and you would get a kick out of the fact that what am I watching in the background while I work from home? Hallmark Christmas movies! LOLOLOL
nomadd - I'm the exact same age as you. I 100% understand how you're feeling, I feel very "young" to be going through all this now, and these boards have been incredibly helpful to find other women in the same scenario, at the same age range. Right now I'm finding ways to keep up my social, happy life even while going through this, although I have made diet/lifestyle changes - no drinking, no red meat, no dairy, no processed foods. BUT I'm discovering ways to do it and still enjoy - it's not going to stop me from going to see a holiday boat parade with my friends, or do a weekend overnight trip to visit my sis (we get weekends off from rads), and for Thanksgiving I cooked a gluten-free dairy-free pumpkin pie that was actually quite delicious! So there are ways to still enjoy while maintaining a semblance of normality. Since you're so early stage, I think you can strike that balance even more.
Oh and working out is a good way to avoid the fatigue from radiation. Keep it up if you can! For me, doing workouts before my radiation treatment was always better vs. after.
alicebastab - thanks for letting me know re: break before tamoxifen. We will see what my onc says for me. How have you been doing on it? Like PurpleCat and Nomad, I'm worried about SEs, almost more worried about that than I was about radiation.
lplibrarygirl - welcome! I feel the same that I was hoping this would be a bump in the road and it's turned into a much bigger thing. My new motto is how can I maintain my normal life and sense of self while going through all this?
wised - Domino says dogs are great and thinks you should get one. Granted she's hugely biased BUT...
DeeBB, Joytxs, librarygirl, nomadd, dani, cherry, ghostie, purplecat and others still going through treatment - there's a light at the end of the tunnel, promise! The good news about daily treatments is that you can check it off fast.
Here is today's paw family pup update - Domino and Tucker out for a walk with their paw-mom because I did not have to drive to radiation treatment today! So Tucker makes an appearance too. And yes, it's sunny, I'm in southern CA. It's high 60's low 70's and we wear our winter jackets, I know, we are wusses here when it comes to weather! ;-P
Dec 12, 2018 08:04PM egregious wrote:
Six more to go. I am SO TIRED of doing this. Gotta keep going. They said my skin was holding up pretty well. Looks red but could be worse. I feel something deep inside, bone?
Dec 12, 2018 09:43PM - edited Dec 12, 2018 09:45PM by PurpleCat
Hi Highlyblessed, I am sorry you need to join this thread but I'm glad that you found it! My radiation is on the left side too. I am guessing that you'll have to hold your breath, like I do, to sort of raise the breast high enough to get it away from the heart and prevent damage. That sounded pretty intimidating at first, but at my very first appointment they showed me all the equipment without having to try it on. Then I got to practice with it at the simulation appointments. I have a favorite hymn that I sing to myself in my head while holding my breath, and usually the breath holding is done before I get to the end of the song. Or sometimes I just concentrate on my breathing. The sessions go super fast, and the individual zaps probably don't last more than 20 seconds each. You can do this! Think of all that you have been through already, and how strong you must be to have gotten through it.
Dec 12, 2018 10:51PM - edited Dec 12, 2018 10:54PM by Joytxs
Today was my first treatment. I had to push them to get me in today as it is really busy right now. More scans were done prior to treatment -- an hour with my arms over my head not moving. My shoulders were killing me! Finally they got everything to line up. First treatment was about 10 minutes and I have to hold my breath because of the left side and I managed to do it with no problem. The tattoo didn't get done today and will be done tomorrow. My BP was checked afterwards and it was high. Geez I can't imagine why...
The nurse gave me a sack of Regenecare and RadiaplexRx along with Aquaphor to put on morning, after RAD and at night. Anyone else use Regenecare and RadiaplexRx?
I'm glad the first one is over and I'm that much closer to being done. Now only 32 to go...
My fur kids that help me get through this, Walter and Mabel.
Dec 12, 2018 11:07PM Moderators wrote:
Welcome, Highlyblessed! We hope you find this community to be a source of support as you begin your radiation treatment. It's totally normal to be scared, but you can do this! Ask a lot of questions about your concerns at your first appointment. And you'll get lots of guidance here.
Dec 12, 2018 11:21PM Salamandra wrote:
I am loving all these dog pictures. Pebbles, there is a fancy housing development project I go past on my way to treatment. It's called Domino, with big ads in lots of places. Now I think of your Domino and it makes me smile!
Nomadd, I'm also at MSK! My appointment is at 10:20 but I'm never in a rush. I'd be glad to meet up if you'd like. PM me and we can coordinate. But no pressure :)
Thank you all for the sympathy and support on the heartburn. Starting the drugs tomorrow. Hopefully won't take too long to kick in.
I started the tamoxifen already - since I'm off work I wanted to get as many new side effects out of the way as possible. The doc said it can take a while to feel all the effects since it takes a while for it to get your estrogen really suppresed. I'm at 3 weeks now. So far it hasn't been bad! I had a couple of days of joint pain (my old ankle injury mostly, acting way the hell up) but it seems to have receded. A couple of days of dryness right at the beginning, but also got better. That's it so far. I bought a bunch of ultra moisturizing skin care products for cosmetic effects.
Dec 12, 2018 11:37PM AliceBastable wrote:
Last day of rads tomorrow!!! Then a short break until starting Tamoxifin right after Christmas. Hmm, I see some people have joint pain with it? It's one reason why I picked it over an AI; those SEs sound much nastier on the joints and bones. Guess I'll find out soon.
Dec 12, 2018 11:51PM - edited Dec 12, 2018 11:53PM by PebblesV
Salamandra that is AWESOME re: the Domino project. I'm so glad it's something to make you smile on the drive! They called Domino "the Domino effect" at the hospital where I was being treated LOL. What is it like when you get joint pain? It's actually helpful that a lot of us who all went through rads together are going to be starting the AI or tamoxifen together too.
Joytxs - what cuties! Domino and Tucker definitely helped me stay positive during the whole thing.
Highlyblessed - somewhere earlier on this thread I posted what I've been doing to minimize side effects as much as possible and it worked for me. I went through a whopping 30 radiation sessions and my skin is FINE, my movement is FINE, my level of energy is FINE. It's very true SE's can happen and it's hard to know which side of the coin you would land on, but please be reassured that a lot of us do get through with minimal SEs (some I've heard have had none at all, I still got a blister and a couple scratches). 100% pure aloe vera gel, miaderm, aquaphor, lotioning immediately after radiation treatment and staying hydrated is the summary of what worked for me.
Here's a fun little bonus for everyone... this is Domino when she was a little puppy! OMG look at that hamster, I had no idea she would grow up so pretty.
Dec 13, 2018 11:04AM Nomaddd wrote:
Salamandra - Definitely. I will PM you. Mine is I think around 9:10am so we can certainly coordinate. Tomorrow is the first one at 2:45pm. My parents will come visit me for the holidays during radiation so that will be both lots of fun and interesting I am sure:) That much time with parents!😀
My MO also wanted me to get a colonoscopy at MSK even though I am 43 so she can start being on top of that too. My gene test came with an unknown variant at CHK2 gene, thus the colonoscopy. On top of that, I am seeing a hematologist next week to check my Factor V Liden gene for blood clot potential. 23andme had shown i had that variant which makes Tamox too dangerous for me. Thus starting sometime in January, most likely I will be on Lupron+AI. Bye bye my periods and youth:( I am quite an active person who loves to exercise so the potential bone loss and joint paints are making me quite anxious. Albeit I guess vit D supplements and lots of exercise help slow degradation.
Any 40ies here that are on AI?
Dec 13, 2018 11:48AM Spoonie77 wrote:
Nomadd - 23AndMe was able to tell you about ability to take Tamoxifen? Could you explain a bit how they determine that? I would be SUPER interested in knowing this. You would think that every single ONC would run this kind of test before they gave us Tamoxifen in the first place! Yikes! So glad you are on top of all of these issues and your team is helping you coordinate through them all. That's so wonderful. :) Wishing you the best as you continue on your journey.
Dec 13, 2018 01:59PM AliceBastable wrote:
Longest damn seven weeks of my life.
Dec 13, 2018 02:21PM - edited Dec 13, 2018 02:24PM by egregious
Dec 13, 2018 03:17PM Nomaddd wrote:
Congrats Alice! What a wonderful xmas present 💕
Spoony 77 - 23andme was able to tell you some risks for variaous diseases before 2010, but then I think regulation caught up with them and now I think they mostly tell you about your ancestry. Check out their websites if they still do health risk assessment. For example I knew already I didnt have the brca1 gene due to 23andme test I had taken in 2006. When I had that test done, it turned out I had a pretty elevated risk for DVT and blot clots because of a variant in my Factor V liden. When i told this to my MO, she definitely wanted me to see a hematologist to check and verify. Since tamox can cause blood clots, they have to make sure.
Thing is noone in my family had any clot issues, neither have I. So other than 23andme, I would have had no idea! So I agree with you re testing everyone before giving tamox. Blood clots are pretty serious.
Dec 13, 2018 03:30PM Dani444 wrote:
Joytx- Man, that is a long time to have your hands over your head. Glad you got that out of the way! Love your pups and their names are awesome! The cream the center gave me is called resta lite, but I have yet too use it. I have been using the "my girls" cream and aquaphor. I was also using 100% aloe, I would put it on and let it soak in before using my other cream. But I went in to put the other cream on and had big welts , I guess from the aloe! Kinda panicked me but my skin calmed down after a bit.
Pebbles, Cracking up that you were watching the Hallmark channel while working. Again today, they still have it tuned in to that channel. Maybe I will mysteriously change the channel.....I don't usually have to wait long but it might become my mission :)
Salamndra, I hope the meds do kick in quickly and resolve the heartburn.
Highlyblessed, welcome, it is definitely scary at first. It helped me to actually see my plan and have it explained in detail what the impact would be on surrounding structures.
Nomad, that is very interesting about the 23 and me information impacting your treatment choice. I hope for you to have little SE with the AI.
A coworker gave me the most hilarious gift, an adult swear word coloring book for cancer survivors. I REALLY want to share a page with you guys (this particular page doe not have any swear words) but not sure if it would violate any rules ;)
Dec 13, 2018 04:40PM PurpleCat wrote:
Yay, Alice!!! So glad for you!
Dec 13, 2018 04:40PM Wised wrote:
Dec 13, 2018 04:43PM Wised wrote:
Nomadd, did you find a hematologist? My MO is a hematologist.