Fall Rads 2014
Comments
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Thank you so much, Peggy!
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Peggy, with all your challenges, you manage to maintain a delicious sense of humor ("6-pack abs" "HUGS!!! (gentle ones at that!).") If anyone should have stress headaches, it should be you. Humor is great medicine for most everything. Hope you are able to get some outside help with your caregiving and get some care for yourself!
MomMom, thanks for all the great information. I wish I were a 'gym rat'. I'm carrying MANY extra pounds and even walking 45 NY blocks isn't hitting that. Did make me feel 'empowered' though, and with everything we face, feeling empowered is a great thing!
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How many times a week are you ladies getting x rays ?? I am getting them twice a week and it seems like a lot.
5 down with 28 to go.
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hello fellow fall rads-ies,
I am moving over from my chemo board a little late...life happens right? I have read quite a lot of the posts tonight, and first want to say thanks for all of your insight, questions and support of each other...I already feel at home.
Hindsfeet, you are in my thoughts & prayers. Good luck to you.
So, here's my BC shtick: for Christmas Eve 2013, I became a citizen in CancerLand...
I had a lumpectomy and did not get a clear margin on the right side. So i started chemo knowing I would have a 2nd surgery 3 weeks after completion. I had 4 DD AC, and 12 weekly Taxol with Herceptin.I had a bit of a rough go with my liver during chemo and a respiratory infection, which set me back several weeks. But I finally finished June 26th. I have had a heart issue with Herceptin, but they are keeping me on it & I started a new heart med.
For my 2nd surgery, after much deliberation and tons of reading, I decided to do a BMX instead of another lumpectomy. I had that done on July 23rd. It turned out to be a good choice, as I had some other bad crap going on in both breasts that while not cancer, raised my risk of a new cancer significantly. I am not having recon until 6 to 9 months after reads...so that is a 2015 adventure.
I started rads on August 21st, so today was actually #21. I did pretty well until #15 when the RT mentioned how good my skin was doing. He jinxed me, the next day the middle of my chest broke into this incredibly itchy area. So far the rest keeps getting angry red, but no additional skin breakdown. I am using aloe gel, 2.5% hydrocortisone cream & aquaphor several times a day. I decide which to use depending on what I am wearing for work that day & what will get on my clothes. Ugh..
I am not sure how you ladies with breasts do it. I can only wear the very softest of my cotton shirts and cannot imagine wearing a bra! I am not sure about fatigue, almost everything we do for BC causes fatigue, so for me, who knows why, I just know I am tired.
In positive news, only 7 regular sessions left, then 5 boosts. My hair is a little over 1/2 inch long. I am back to work full time and I am finally feeling like I am getting my life back a little.
I am hoping you all have a good weekend. Thank you again for sharing your stories.
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Thanks, Mortmain. DH will be going to a rehab facility for 4-6 weeks and that will give me a huge break (first gotta get him out of the hospital and he's sick right now - he just can't win).
Jaimieh, I go for my rads 5 days a week (weekends off). 14 down, 19 to go (including boosts). So far so good - knock on wood.
SmartAssSmurf, I go braless most of the time. Although I do have a cotton bra that is fairly comfy. While I like the Genie bras, they tend to ride up on me and my incision in from 6 o'clock to just below my nipple. It's not tender but that riding up is annoying. Your poor chest has really been assaulted so I'm not surprised only the softest of fabrics work for you. What an awful decision you had to make and how wise it turned out for you to have the BMX. Yippee for hair! I'm impressed that you're back to full time work. You're amazing. You're doing damn good - keep it up!! HUGS!
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First week of rads complete and so far so good. Only negative thing I found out this week was that with my esophagus situated to the left of my spine, my esophagus is getting radiated and will get irritated. So the RO said to expect some mucus build up and a cough/sore throat. In preparation for this, he sent in a Rx for Mary's Magic Mouthwash for me, but the formulation he prescribed was not covered by my insurance, and would cost me ~$60 every 2 weeks out of pocket, so I asked him to see if he could find a different formulation that IS covered by my insurance. I'll find out Monday what they can do.
mortmain - Sorry for the slow response. I've been away from this board since Wednesday. My RO also said Tom's of Maine deodorant would be ok for the NON-RADIATED side only and to use nothing or just cornstarch on the radiated side. But I really haven't need deodorant at all recently. Ever since I started Chemo back in April, my sweat doesn't smell at all. I guess the chemo killed all the bacteria? I'm monitoring myself to see if that changes, since chemo is over with, and have a Tom's stick ready in the cabinet to use if needed.
As far as the rad-blasts, I recounted yesterday and got 11. On Thursday, I counted 12. Either I can't count or they've been changing it daily! They come from all different directions. Yesterday, I paid attention to where the blasts were originating and found that 3 come from my right side above the table, 5 from my left side above the table, and 3 from my left side below the table. They are blasted sequentially as the gantry rotates around me from one position to the next. The RO said that by doing this, they can avoid my heart and lungs for the most part, although the heart still gets some low dose radiation, and the top part of my left lung is getting hit too. It's the best they can do with IMRT (Intensity Modulated Radiation Therapy).
jhodro - You're not alone in having problems with memory. I just recently noticed that I am struggling more with remembering things, like names or even just words. I guess chemo brain is what it is! This morning, I saw one of my friends who had his daughter with him and I just could not remember her name! Good luck with your job hunting. What's "hydrogel?" Is that Rx or OTC?
Puffin2014 - Congrats on finishing chemo! Woo hoo! Happy day!
Bow1965 - Welcome! I have the same fear as you that they'll radiate the wrong place! I guess we just have to trust they they know what they're doing, since they've been doing it for long time. We're on the same schedule almost. I just started rads Monday and will be done the Wednesday before Halloween.
Jaimieh - I get x-rays daily on the table right before each rad treatment. I told my rad techs that was a lot of x-rays, and they said that combined in total, the 33 x-rays will give me less radiation than one regular chest xray.
PontiacPeggy - Glad to hear you will get a little break soon to help you rest and recover.
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Hello all
Haven't been on here in a while ... am 6-1/2 weeks PFC and have done 17/30 RADS. Will have 23 whole breast RADS, then 7 boosts.
Am always amazed at how different every doc and center seems to be in terms of what they do and what they tell their patients!
For me, I am on a ramp from the waist up. Head turned to the right (left side is being radiated). No bars to hold onto, just clasp my fingers on the rest they have there. Have a bolster under my knees. I am getting radiation arc therapy ... the gantry passes over 6 times and I get a constant beam of radiation the whole time. There are dozens and dozens of little "fingers" in there, leaves they call them, and they constantly move to custom shape the beam of radiation to my body to avoid heart and lungs as it passes over and this is all determined by the CT scan that I had on set up. They also retake xrays once per week to compare to set up to ensure that everything is still in the same position. I got 4 pinpoint tattoos at set up, and another after the first treatment, and two area where they used sharpie markers with clear, round stickers on top of those. One of them came off each and every day and they had to redraw it every day. After 5 treatments, they just put another pinpoint tattoo there. That makes 6 little pinpoint tattoos of which I can't even see 2 of them without looking into a mirror :-)
My RO showed me the scans ... found it quite interesting as it shows the heart and lungs all in 3D and then shows the radiation field.
My appointment is at 11am and I am back in my car ready to leave by 11:17 to 11:22 (digital clock in the car <g>), so it takes no time at all. I meet with the RO on Mondays after treatment, so that day takes longer. I go every day, Monday through Friday. I will be finished on October 8 assuming they don't have a machine breakdown and my skin continues to hold up!
So far, so good (keeping fingers crossed!!!) Had some itchiness on my upper chest where the skin is the thinnest and has been exposed to the sun the most in the past. They gave me hydrocortisone cream and that seemed to help a lot.
They also told me to moisturize, moisturize, moisturize! 3 to 4 times per day at a minimum. And moisturize inside and out, so have to continue fluid intake which I find the hardest thing to do!
Still don't have a cotton bra. I had more time right after set up, but the seroma was leaking, so didn't want to try any bras on at that point in time. After that, had less time but I couldn't find one that fit in the store and haven't had a chance to go to the store at our hospital where they can custom fit me for one. The whole radiation field feels warm for about an hour after rads (RO said that is normal) but it does seem a little sensitive sometimes as well, so I go braless when I can. That is also when I slather on the Aquaphor and wear an old shirt that I don't care about :-)
Had seeping from a recurring seroma off and on since July, but continued with rads. I have also seen a lymphedema therapist 3 times since starting rads and she was WONDERFUL getting the excess fluid from the seroma to just "leave" Whole area finally feels better. Am being very proactive when it comes to lymphedema!
Only started to feel fatigue at treatment #15 on Wednesday. Different than chemo where doing any little thing meant I had to have a nap. Now, it is more like I ran errands all day and need to rest with my feet up. I do take a nap as it helps, but it really isn't the same as the chemo fatigue .. .thank goodness!!
Was also told I might get a sore throat as the radiation field will clip the esophagus a bit. I had lymph nodes involved so am being radiated from above the collar bone, under the arm pit down to below the breast and over to the center of my chest. But, nothing noticable so far.
Had a horrible time with chemo ... was in the hospital once, 2 blood tranfusions, reacted to the Taxol once, white counts down to next to nothing while on Adriamycin ... so am enjoying it that nothing major (so far) is going on with rads!
Also had another echo done 2 weeks ago (3rd one so far during all of this) and heart is showing no changes despite the Adria and after that the Herceptin.
MO had me do a bunch of blood tests ... that will determine where I am for menopause ... 57 years old and still had my period even while on chemo at the beginning! Results will tells us whether I will go on Tamox. or an AI right away. Won't start that until after rads are done.
Won't get a mammo until 6 months after rads are done according to the RO. However, since mammos did not show my original tumor (I found it myself) we probably won't even do that. Either US or MRI or both. We'll see. Just taking this one step at a time and getting through rads first. THEN I will start eating better to lose some of this weight and also will increase my activity once the rad fatigue is gone. Am signed up for a free Cancer Fit program through a local health club offered through my hospital but that doesn't start until January.
What a novel!!
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I thought my final week would never get here but it is, only 3 more boosts to go and I am done. My skin held up ok, I do have a bad area on my clavicle/ neck/ chest area which turned a very dark color and is now very dry and peeling even with all the different creams and the prescription they gave me and 1 area under my arm pit right over the scar from the the node removal incision that is almost brown. The rest of the area is just very red and tender. I have worn nothing but a cotton camisole, no bra, the entire time and lathered, hydrated, and slept when tired. Everyone will be to some degree different but everyone seems to get through it alright and they said the healing process is very quick. I saw my oncologist last week and don't need to see her again until November...that is when it finally hit me....ON WEDNESDAY I AM GOING TO BE FINISHED ALL MY TREATMENTS....when it sank into my brain I was a bit terrified yet so happy....now what do I do? Since last November I had some kind of appointment/ treatment/or dealing with SE's and recovery every week....now the door is open and I feel like that bird...do I stay or do I fly?? Funny feeling....but a great one!!!! To those of you suffering from the fatigue, my got a bit better last week but it is easy for me to take naps since I don't work or have children or a husband to take care of. Listen to your bodies...if you are thirsty; drink....if you are tired; rest...if you are hungry; eat....our bodies have been in the combat zone and are working on overtime mode to get stronger and repair the damages. So onward and upward sisters and we will get through another week and be another week closer to the finish line!!!
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Congratulations, Charusa, on looking forward to your rad finish line in a week. What is next, now that your dance card won't be filled with dates w/ treatments or doctors? Almost everything else will be better than that.
All your advice is great. For me, I must go about drinking purposely, as I've never been in the habit of having liquid by me. So I chug several cups of water over the course of the day whether thirsty or not.
Jamieh, I get 'photos' twice a week, taken by the same machine that zaps me. Are those x-rays?
SmartAssSmurf, so sorry you got this hand, but I hope you find the same support I have felt just by having this community as a resource. To your comment about soft fabrics and bras, I haven't got much tissue to support, but I find my nipple is so sore from the rads that a T-shirt square held in place by a bra is more comfortable than going commando in the softest shift. (It also protects me when my kittens jump on my chest in bed )
MommyQ, your radiation treatment sounds so intricate and sophisticated. At some level, I find the technology fascinating. Are we lucky to be living in these times? I wonder how these innovations in treatment will be regarded in a generation or two.
MakeLemonade, you've been through so much! I've been spared the chemo that so many here have suffered and salute the fortitude you all show.
Your 'novel' is instructive. It is interesting to read about the variations in treatment and recommendations from our doctors. The more information I have the more 'empowered' I feel.
I find myself humbled by all our stories, the hurdles, aches, pains, fearful challenges from our afflictions and sometimes from other parts of our lives. This forum is a place to air fears and woes and complaints, information and humor. This condition is my new obsession, and I feel stronger with this cyber community to turn to.
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I'm so glad to see that others were more anxious about radiation than surgery and chemo. It really bothered me that I'm feeling this way, especially since people/docs were cheering me on saying this was my last big step (not including hormonal therapy). I couldn't understand why I was so scared. I totally agree with writinghelps, I was very "tender, emotionally and physically, and so very gun shy at this point". The setups for radiation were also surprisingly hard for me, I think that was because the medical professionals I've encountered so far have been very caring and patient (with lots of hugs) where my radiation techs have been very technical and not very nurturing. After my second setup with them, I got to my car and cried for a long time, which was the first time I've really cried during this journey. I considered changing hospitals but I like the radiation oncologist and her staff at this hospital. So I'm just going to tough it out, 5 sessions down 16 sessions to go.
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Hello momof5nc, and welcome to Breastcancer.org. We're sorry to hear of your not-so-nurturing experience with the radiation techs, but so glad you've found this community. We're certain that here you will find a more supportive, nurturing, safe place where you can share your frustrations and hear from others who have gone through similar experiences.
We wish you all the best as you continue with your 16 remaining sessions.
The Mods
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Momof5NC, so sorry that you've had such a rotten time with radiation. My experience with the radiation therapists has been totally opposite of yours. They are caring and nurturing. My DH is hospitalized right now and they ask how he is doing and how I'm doing. You might want to mention to your RO that you don't find them as good as you thought they should be. He/she may not realize they are not being warm and fuzzy - which we definitely need. You've been through so much. This step should be easy for you. We're always willing to listen and extend loads of HUGS to you. Take care!
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Mpmof5NC= My first couple of visits the actual techs were not as friendly as the rest of the staff. Once all the "technical" work was done and I started going in for my treatments they became very friendly and caring, asking me how I was doing, offering me warm blankets, telling me my skin looked good and even showed me the pictures each time my field was changed. May be they are serious at first to get everything aligned right and being on point. I warmed up to them as time went on and now it is almost time to say our good byes. Hope it gets better for you also.
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momof5nc- I have only had my simulation so far but I did feel, like you, that the techs were not as warm and I also cried all the way home. Hoping like some have mentioned that it is just the seriousness of getting things set up right at the beginning.
Question: I signed up for a cancer retreat that will run over the weekend after 5-8 of my radiation sessions. It has some yoga and light hiking. Do you think I will be okay physically to do those things? I am currently walking 3-4 kms every day and will be up to five by then.
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I had a panic attack during my sim.... I found the set up to be almost unbearable, and then the sim I thought would be easy, but it wasn't. I'm two weeks in (10 down, 15 to go) and the set up and sim seem so long ago... I teased the tech the other day about not remembering my birthday - as we have been "dating" for two weeks and he asks me every day! .... my point being that it gets easier. (at least until it gets harder...which I'm fearing it will as I get more tired....and then it will be OVER.
Big hugs everyone!
Jen
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I just had my sim on Thursday. I, too, was very disappointed with the rad tech. I was told that my appt would last 90 minutes including the RO appt. I got there and apparently someone double booked the rad tech. She was clearly not happy about having that happen and felt the need to mention it several times like it was my fault. Because of that she did not take the time to explain anything that she was doing. I just laid there as she worked on and around me and all of a sudden after just 15 minutes I was done. The time I was there including RO appt was less than 35 mins. I sure hope, in all her hurry and frustration that she got the field and markings right!!! I'm not real sure how comfortable I am about going there now. Anyway, I guess I'll go to my first treatment and see how it goes.... Hope everyone is doing well this weekend. Hugs to everyone.
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Generation3 - that's terrible. Mine was the total opposite. Everything was explained and the therapists asked if I had any questions along the way. And they've been nothing but fantastic from the first minute. Couldn't have a better experience. I've completed 14 of 33.
JenWith4Kids - so sorry you had a panic attack during your sims. You've been through so much it is quite understandable. At least it seems that all is going much better now.
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mortmain - I hope in a generation or 2, they'll have this figured out where all a patient has to do is swallow a pill and it'll kill all the cancer cells but not any healthy cells. That would be awesome.
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hi ladies,
Jumping in. Seeing some familiar names from the chemo and surgery boards! Had my first rad today. I'm getting IMRT with a skin bolus. Anyone else with either one?
One other thing, anyone else have their tattoo changed? They went over the tats with a sharpie today and I noticed when I got home that one of the sharpie marks was about an inch away from the tat. Going to ask tomorrow just curious to know if this happened yo anyone else
Love and hugs to all you wonderful ladies!!
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Hi all,
Had my first rad tx today. What a difference a day makes. This tech took his time and explained every single step and didn't do anything until I told him I understood. He was even warm and fuzzy! I feel like I am in competent, caring hands. What a relief!
Pontiac Peggy, How's your DH doing? While he's in the hospital and rehab you should take time for yourself and get plenty of rest. Sometimes I wish we all lived close together so we could help each other out on our good days. Wendy
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Jules_NY, I'm having IMRT radiation. But no skin bolus. I've completed 15 and, knock on wood, no problems at all. I had 3 tats done in a straight line: one on each side of my rib cage and one in the middle. They haven't changed a thing - no sharpies here
Wendy, DH is still quite sick but I think he may have turned the corner. His pneumonia is not going away. He had a kidney with a cancerous growth on it removed and that's doing well - they were able to do a small incision of only 3-1/2". I am definitely hoping to do some of the things I have not been able to do in several years while he is in rehab. Sleep, nap, have lunch with friends, shop, even watch tv programs as the are broadcast. It would nice if we lived closer. Just to hold hands for a bit every once in awhile. So glad your rad went well today. I don't have "techs" at my center, they are called "therapists." Makes for a slightly different expectation I think.
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Jenwithkids- I suffer from panic/anxiety disorder and it really has been awful trying to get through each and every step of this journey. The only thing I haven't been able to get through at all was the MRI. I got through the PET/CAT and so far everything else has been alright. I do have medication for it and a few "tricks" that I have created to get me through things. Peppermints help a lot making my airways open so I feel I am breathing alright is 1 of them. I have been fortunate to have doctors that somewhat understood what panic/anxiety is. I kept my eyes closed the entire time and pretended I was floating on my back in the water...that is what I did to have natural childbirth so it relaxes my body somewhat.
My sims did not take as long as they said it could have. I was in and out even seeing the RO in about 30 mins. Each visit gets shorter and shorter. I started with 4 fields then 2 and now 1. I lay down, 1 quick zap and I am up and out the door. I do have the same techs each time I go. I have only 2 more to go and I am done. I remember the first full treatment and then again on the boosts they called in the RO to double check the area and I was always good to go. They know their stuff although some of them need to learn better patient skills but we all have a bad day but then again that is no excuse. They should understand that we are scared and we have been through hell and a little compassion goes a long way. I think radiation and scans are the hardest thing b/c we can't have someone hold our hand or sit next to us like we did during chemo. We are alone, half naked, laying on a table with a huge machine moving around us and we feel vulnerable.
I forget who posted they were going on a trip/retreat during rads, you will be fine especially since you are already active. Just protect your skin from the sun.
I started counting my days down 33, 32. 31....then I started counting how many treatments left 12, 11, 10...then I just stopped counting and before I knew it I am almost there with just 2 to go. I went today and spent more time talking to my nurse and getting vitals then talking to the doctor...He asked how I was feeling, looked at my skin, then said I would have a follow up in 2-4 weeks....less than 5 minutes!!!
This process is over before you know it, for me I think it was #20-25 that I started having any real skin issues but that cleared up very quickly. They reminded me today how fast your skin heals once you are done. Somedays the fatigue gets to me other days not so bad but at least with fatigue all you have to do is rest and drink a bottle of water and you are up on your feet again. Good luck everyone and hang in there!!!
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charusa- I'm the retreat one. Thanks so much for the input....I really want to go!
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Sorry for my late response!
The hydrogel is Rx and it numbs the area that it's placed on, basically. You can keep it in the fridge, you cut it into the size you need like you would stickers (does that make sense?) and you remove the plastic cover and stick it on. I use it over my nipple with a bra when the sensitivity is worst (when I'm most active). I got these from the RN. You can only use it up to 4 hours a day, but I've found it's very helpful. I got two 'packs' it's like a square, maybe 4x4, and it has lasted me a couple weeks - but I don't need it every day.
Hope this helps. Now, I'll take more time to catch up...and for numbers' sake: I'm 26 rads down, 1 whole girl to go, 8 boosts, starting Thursday. If all goes well, they'll spring me from rads jail on 10/6!! Cannot wait!!
Good luck everyone!!!
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jhodro- Ohhhhh, I was thinking that Hydrogel was an ointment that comes in a tube - but you are describing something more like a specialized bandage. No wonder I couldn't find it at my local CVS. About the Aquaphor that various people are recommending, there are several different ones, some in a tub and some in a tube, do you know if they are all the same?
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blownaway - aquaphor is the same whether it's in a tube or a tub. I bought the tub -- I am using a TON of it!! It's very greasy - I've been wearing old t-shirts as much as I can.
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Thanks to everyone for all your replies, I feel so much better. I did mention to my doc how I was having a hard time and she was great and asked if I wanted to talk to the cancer center counselor. I did and they had her come right in. After confiding in her, she helped me with coping strategies. Truly thanks again
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Momof5nc, so glad you found someone to talk to. While my experience has been different, it is hard to find someone who understands all the stress you are going through. Keep talking to the counselor. And remember we all care very much and want to help in any way we can. HUGS!!!
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Hi everyone! I feel like I am among friends with so many of you from the April chemo board!
I am still in decision mode on rads. I thought I was off the hook until a few weeks ago when my MO asked that I go for additional opinions. u of M yesterday said I was in the gray zone. I am not worried about the treatment itself but more the lasting side effects and impact to recon vs benefit. I need to make my decision by end of next week so I can tell my PS since I am scheduled for exchange in October. He will be irritated for sure since he asked me every visit if I was having rads and I always answered NO!
Any advice or words of wisdom on how you made your decision? Thanks all!
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Rad#8/33 today. I'm 25% done! My husband bought me a bouquet of flowers to celebrate.
I still feel pretty good and skin looks normal, although it feels just a tiny bit more sensitive on the rad side. I'm continuing to moisturize daily with my Body Shop aloe body butter immediately after showering using Dove bar soap.My chest muscles feel super tight across my TEs. Anyone else experiencing this? I asked my RO about it today, and he said that rads shouldn't cause that at this point, although after rads are done, some scarring could occur and cause some of the muscles to feel tight.
Jules_NY - I too am having IMRT with a bolus (which is really just a wet towel they place on top of my chest). They explained that the bolus would help them be able to radiate closer to my skin.
mmtagirl - That's a tough decision on whether or not to have radiation. I didn't have a choice. My MO basically said I needed it based on my diagnosis. I think back in the April Chemo board, someone posted an article about how radiation was being recommended more now for folks with lymph node involvement...but I'm not positive. I just did a quick search to try and find it, but couldn't. Instead I found this post, which DOES say that rads benefited folks with 1-3 lymph nodes involved:
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- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
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- 591 Pain
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- 109 Welcome to Breastcancer.org
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