Winter 2015-16 RADS
Comments
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Boost #1 down! We had a massive rain storm this morning, so it took me almost an hour to gt to the center, waited only 10 minutes... took them 5 minutes to put the bolus on and line up the boost, boost took 30 seconds. It took longer for the radiation doors to open and close than it did for the actual treatment... 2 more this week and two next week...then done!
Then its on to Arimidex. MO thinks I'm in permanent menopause since chemo, and at 47... so, that's what she wants to start me on... I'm still on the proverbial fence with any hormonals, but working through it. I see an Integrative Onc at our center next Monday, maybe he'll have some thoughts about the hormonal drug. This one comes with joint pain as it's # one side effect, along with others.. I'm already having that, so not looking forward to adding to it.
Warrior On!!!!
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Hi Amy!
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Hi guys. Quick question. How do you prevent the underarm chaffing. I am only 2 treatments in and I can tell that is going to bother me. Slight stinging sensation.
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mairew: A couple of things that you can do to help with the underarm chafing...use a cornstarch powder (they recommend no powder with talc), or just plain cornstarch. Put it in a tied nylon and just kind of blot it on. Or, find a comfortable 100% cotton tee shirt (I got a pack of men's undershirts) and make sure the armpit area of the sleeves are not real loose. Just having that soft material between the skins that rub help out. Make sure that you are also applying your creams in the armpit area, too.
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@Kate - I'll take one of your smoothies! Thanks for the yogurt reminder. I was sort of living off it for a while on chemo, but now that bread tastes good again, I had reentered carb land. I know my body won't let me stay as skinny as I got during chemo, but don't want to gain it all back in one month!
I'll second the undershirts. I wear a super soft tank/undershirt all the time, no bra, and tuck it under implants where it hurts at the BMX scars. At night I sleep I in the undershirt and lather on Miaderm and Aquafor and just let it be messy. In the morning, the undershirt goes in the dirty clothes, and I rinse off for my 7:30 appointment with the cold hard table. Kind of adds up in the laundry pile, but I'm warm and comfy.
Four more only...
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Marijen - a maintenance man entering the room while you are on the table is completely intolerable and I hope you raise heck about that. I have no problem with male techs/doctors but that's a completely different issue.
I'm one week post rads and all the pink I had from the whole breast rads has turned to tan but the area where I received the boost is still pretty red and weeping. Tomorrow, I get the port out which is going to be huge for me. It's the last big cancer reminder, not that I could ever forget this but I know y'all understand.
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justmaximom15, so happy for you about the port coming out!! I dream of the day!!!
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just maximum, I was sitting in the exam room with a gown on and my hoodies over that. Felt it was pure stupidity on his part. Next time I ask for the door to be completely closed or do it myself. What happened to patient privacy is what I wonder. They also come through the open waiting room where we are all in our gowns. At the hospital for surgery they parked me in the waiting room with all the relatives to look me over in a gown with IV and wheel chair. I made them face me to the wall
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Geez, time flies...have been so busy working in-between running to the radiation place every day. Already finished #10 out of 21 zapping wide area; the boob, clavicle, pit area. Like the chemo, they're doing this before surgery. So far notice no effects from radiation yet but some occasional itching and mild inflammation of the target boob. All the nasty effects I'm feeling are from that hated Herceptin. - sore stiff joints (the abrupt estrogen suppression & body struggling to acclimate to that), rashes on my back not related to rads, and on and on. Mean stuff....:-/
Am using aloe oil & penetrex & ASEA gel on the rad treated skin, feels refreshing that odd new-agey combo.
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Happy Soggy Hump Day All ... done #18 skin pink to red in areas, very itchy and raised on collarbone but holding.. Agree on armpit skin - very weird .. good reminder on the cornstarch!
Welcome AmyBeader - so sorry you have to be here but glad you found our awesome group! Totally normal I think to be feeling the way you are - I think most of us are either right there with you or have been at some point.. I had more anxiety going into Rads than going into chemo - once you get started and in the groove hope it goes fast for you! I am suffering from horrible sudden chemopause hot flashes too and I got a Gel'O Cool Pillow Mat on Amazon that you can put on top of your pillow to cool down quicker during the night .. they work great and stay cool for awhile when laying on them ..
Suzanne - my RO gave me a prescription cream for the red itchy areas - can't say it is better but it is not worse so I will take it. The name of the cream is Betamethasone Valerate 0.1% - 2-3 times per day.. hope the pace picks up for you!!
Peabrain - wow no Ibuprofen - did not know - I have been using it for my shoulder .. UGH! Tylenol does not work! And I am 46 going on 90 with ya - Right hip will not move at times it is hilarious - WooHoo for you so close to the end! And Yes to hungry all the time and for things I should not be eating like M&M's and Cheetos (not together) -I think because everything tasted so lousy for so long I now want to taste everything LOL
Marijen - I so agree with everyone - completely unacceptable for maintenance man to come into your exam room .. and I am so sorry the nausea is still with you - Ativan not helping?? Maybe try the Zofran or Compazine but keep the Miralax on hand .. just in case! Really hope it gets better for you!
Duzy - sorry you still have The Cold that I think is way worse than a normal cold - have to go find the truck that hit me!! Glad your skin is holding - my SIM for Boosts is next Thursday
Diane - funny I just realized our last day is IRISH Day - and I am 100% Irish - can't wait to celebrate... for some reason I put my last day as the 16th... For the Acupuncture - did your insurance cover any of it - I called a place my Cancer Center recommended and they immediately told me not covered and standard is 5 treatments and it's $150 per session - YIKES!
Scotland - good luck with your Boost sim - let me know how long arms up in the air - hoping it is shorter than 1st sim - my shoulder is just barely hanging in there!!
Brimton - agree and I think and this may sound corny but I think it is like grieving for our old selves when we were "normal" and not treated differently. I am finding that people (friends/family/work) look at me differently still and act differently - maybe just me but just can't wait til the day this behind me and not the center of my world and everyone around me - love the support but sometimes too much .. not sure I am making sense here!
KateB - thanks for sharing Protein Smoothie - will have to try one! Good luck with the Snow - we are getting rain here but it would normally be snow..
JerseyGirl - WooHoo on Boost #1 and so with you on the fence with Arimidex and additional Bone/Joint Pain - can't imagine what I have now being worse ..
WooHoo justmaximom with Port Removal tomorrow - had mine out before starting rads and have to say the feeling is almost as great as the last day of chemo ... good luck tomorrow
Have a great night all!!
Mary
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@justmaximom congrats on getting the port out!
For those of you who had a second sim for boosts, how did it compare to the first one? Is it as long/annoying? I have mine tomorrow after treatment and wondering how it will be...
25 down. 3 whole breast, 5 boost to go...
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Hi Everyone
MY ipad my sister gave me took a dive. UGH just one more thing. Justmaximom WAY TO GO! on the port. Marijen We are exposed enough. I am sorry you have to deal with that too! I have a two male techs and they are pretty good. They try to keep me covered at all times. I was joking with them today. Just gotta laugh. Yesterday they did film, didn't line me up right and had to do them all over. I got a kick out of it because they asked me if I thought I was a bit higher on the metal bed. When I said I don't think so. They said it was off a millimeter. How am I supposed to feel that??? I have also been trying to down 30 oz of water before I go at 8:40am so I was laying there having to pee... They are pretty good though setting up my classic rock, so I can dance in my head and picture the death ray to cancer DNA. Of course I always think of all of you and say a quick positive thought for you.
Today I was supposed to see RO I had my list of questions and they tell me. Oh we are busy today so she is going to see you tomorrow. UGH Just roll with it.
I must say all of you that are working and going through this I am impressed. I don't think I could have done it with my stressful job. You are amazing!
Read up about wine and reoccurrence. I think red is ok...
I forgot to tell you I got a bill for my Onocotype. The insurance didn't pay any of it! i called up the insurance casemanager and gave her an earful. She has done nothing for me so now is your chance. She called back later and said YES they will pay. WONDERFUL as it was $4,000.
I also had a talk with my husband who thinks this is just something "to check off the list". I made some work comparisons and I think he actually gets it.
Have a great night everyone sleep well and don't forget your cream, like you would.
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mdoc - Ativan helps but she only gave me five days worth. She's In denial that it could be the radiation, even though she said it could I guess she meant only for a couple of days. So....I was sent for lab work so's we can blame it on something else. Problem is my labs got all skewed up when I did them right after MRI, PetScan, Ultrasounds and CT scan. So bottom line is doctors continue to be freaked out about prescribing drugs. Let us suffer instead. I must have done a bad thing to get cancer, right?
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It is so interesting hearing everyone's different experiences. I guess that joint issues are either leftover from chemo (which I didn't have) or from the hormonal treatment (which I will have but not yet). I'll report on the state of my naturally creaky joints as I progress with rads.
I get xrays every day too, but no blood work. I love my RO! He spent extra time talking with me today to explain exactly where I was getting radiated. They can produce any convoluted field shape, not just a circle or rectangle. This means they can selectively radiate only the breast tissue. They've probably never had a patient who asks as many questions as I do!
Yesterday was my first treatment. They drew on me with a red marker. Later, after I applied Miaderm, the marker bled onto my bra. Wish they would have warned me - bras are not cheap!! Today they said that was a one-time only thing and any other marks will be small and covered by a sticker.
Diane, good for you for speaking up about the linen vendor in the rads area. That's just not right!
Martini, I too won't be starting hormone treatment until after rads. My MO said they want to keep the SE's separate.
Hang in there, everyone. The end is in sight!
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Junipercat - 6 weeks before any deep tissue massage. She was not to keen on the idea though since I have tissue expanders. She didn't want the massage therapist to accidentally move them out of their pockets. She recommended that I ask my plastic surgeon first.
I can go in and get lymphatic massage right after rads or even during. I got a referral for acupuncture for the tissue scarring and relief, they have a girl that does it right there at the same location. 8 more to go!
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El Tigre, thank you for the update!! That's wonderful that your center has an on site acupuncturist!
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Mary & Twnkltoz: Report from the boost sim! It took about 5 minutes, and the only reason it took that long was because they were training someone. The RO drew the field outline yesterday. They told me that instead of the 5 different fields/machine positions I have now, there will be only one and I won't have to hold my breath. Piece of cake
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mdoc my acupuncture is $85 per session see if you can shop around....and I have the world's worst insurance it doesn't cover anything . ..I'm self employed so it was slim pickins..and I'm afraid to change for price hikes...thanks Obama 😣
We just had big storm blow through and I have dripping in my living so I came upstairs ..I just can't take one more thing that needs fixing right now ...feel overwhelmed
Good night all...
Diane
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today I finished rads; 25 whole breast and 5 boosts. I had skin break open under my breast last week and under my arm yesterday. I finally got to ring the bell and I celebrated with cupcakes for my rad team. Feels weird to be done with active treatment but glad to be done. It was a long road from dx 10 months ago to today. I have lost 25lbs, down 2 dress sizes, and am eating clean and working out 2x a week. I am triple neg so I hope it was enough
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Yay, Shopgal, for being done with rads!
Take care of that skin. From what everyone says, it heals pretty quickly once we stop zapping it.
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Congratulations Shopgal! I'm enveous of the ladies who got to ring the bell. There wasn't one at my rads center!
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DiDel....sorry about the leaking....stupid storm. Hoping you can relax and get some sleep...tomorrow is another day!
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Shop- YAY ANd CANGRATS! Keep applying the stuff- my skin continued to fry for about a week or two after rads and then started recovering...pretty quickly once past the bad time!
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Hello Ladies ! Tomorrow is number 26 and then 9 boosts ! I can't believe the end is coming soon....boob is now red and itchy, still using Miaderm and Aquaphor....but I think the whole bra thing is over....just to confining, and with the undershirts, I can really lather up with lotions....the fatigue is BAD these days, but I am also dealing with shingles....and on so much medication, I amazed I can function at work each day....I go in at 7 and leave after treatments at 2:30.....I dont think they are going to Sim me for the boosts ? I asked today and they said no they didnt need to...I will ask RO tomorrow at my appt.....so for tonight ladies....sleep well, rest,rest,rest........I am so happy to have found all of you on this forum...this had become a comfort place for me......good night....
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Today I asked about an x-ray and that is how they start each of my treatments to have me in the correct placement. Ugh! Each night when I come home I soak my feet in a bath of epsom salts for in my mind I think it helps to detox. I am not sure. I have ten left so far no skin changes.
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Yeah Shopgal for being finished - keep putting on the lotion and rest up
JerseyGirl22 and MissV123 so happy for you to be done with regular treatment and on to the final step of boosts. They say those are much easier on your skin so hope that holds for you as well. So sorry Miss V you are having to deal with shingles that is so painful.
Hope everyone else can get lots of rest and keep your strength up to get through - 2 more days than 2 days off. We have gotten a snow storm so hope I can make it to treatment in the morning and not delay my end date. Everyone is so positive and encouraging.
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16 down, 9 to go.
I traveled through LOTS of snow today to get my zaps. . . The techs were all really slap-happy this morning, so we played a fun little game with the breath-gating computer. By that, I mean they started the zap before I was holding my breath, so I took a deep breath, they stopped the zap, and then we started over. Two weeks ago, I would have worried about this; now I just sort of think it's funny.
Time to shovel the driveway! I feel a nap in my future. . . .
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Yea Shop!
10 left for me! Underarm is raw, but dr. is not putting me on a break, so I will keep on going and slathering. I was told that it will take 2 weeks for skin to grow back after last zap. Just keep swimming just keep swimming.....is going through my head. A glass of wine might be an evening addition. I'm reading about the weight loss from some of you and am envious. I know we are all unique, but I've had 15 lb gain since December and feeling blah about it. I'm hoping to exercise and eat better after last zap.
Was really hoping for a snow day or 2 hour delay today, but we are too far south.
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Birdysmom - great to see you hanging in there at your hallway point!!
Marijen - so ridiculous they only gave you 5 .. should be a bottle of 30 with refills!! Hope it gets better and so not your fault or anything you did to get cancer - hugs!
Scotland - thanks for the Boost Sim report - yeah for the 5 minutes !! Hope mine is the same - my shoulder is going to fall off before this is all done !!
WooHoo Shopgal - Congrats and hope all heals well and fast! Know what you mean about long road - I was dx on 4/22/15 and never dreamed I would still be in tx almost a year later!!
MissV - UGH and Hugs to you still dealing with Shingles on top of Rads - hope it is not a bad case and that you will get some relief soon! Good luck with boosts and glad the end is near for you!
Kate - you are simply hilarious! Your breathing fun game with the techs made me laugh - thanks!
Tessio - love love love your Dori reference - I use that one often! I lost 25 lb's in the 1st 8 weeks of chemo -so brutal - and then the last 12 rounds was on high dose steroids and gained 15 lbs back so I am with you on trying to find the energy to get back in the swing of eating right and exercising!!
Heading to #19 now .. Happy Throwback All!! So looking forward to this weekend's break
Mary
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mdoc, maybe it's the teaching hospital culture - they're scared into over prescribing. I'm so tired of this but nothing I can do. In the beginning here I said that it makes me feel like a beggar. We'll see today. #12. There is a place on line where you can check the doctors and how much they prescribe. If anyone interested I'll find the link.
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