Anyone getting ready to start Radiation in Fall 2016?
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I've had some swelling from lymphedema, but it wasn't this noticeable. I received my sleeve and glove right before rads started. I put them on after treatment.
Hope your fatigue isn't too bad so you can work. Make sure you're eating foods with magnesium and potassium in addition to protein.
Sorry to hear the port removal is painful now. Feel better soon!
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Hi, all! I start Oct 10. I had my consult and sim on Friday. It was such a disaster, they were all probably cursing me all the way out the door, since I was cursing at them during. *sigh* I just don't do well with surprises and I work really hard to prepare so that I avoid them. I had spent every day at the hospital and had filed a 30 page brief the day before. My stress level was pretty high. I really didn't expect to blow a gasket, though. I had a list of questions, but the stuff that would freak me out I thought I already knew, most of the skin changes... But then the resident started telling me they were going to do radiation to areas with healthy lymph nodes. I developed LE just about immediately, so I was really concerned with rads aggravating my arm LE. When I heard *that* truncal LE started flying all over my head, I couldn't get real answers, and if I had been a cartoon, my head would have exploded.
And because the field was different, I hadn't been moisturizing a large enough area. I mean, yes, I use lotion probably every day, but not the super intensive stuff. Total freakout fest. Then there was the magic marker party covered with tape that I was supposed to keep for a week? Ummm, it's gone. I took my shirt off and lost it.
Monday luckily I saw my super fabulous PTs, and they brought me back to reality. *They* answered my questions, told me what to expect, what they had seen, what they hadn't seen, etc. They were rolling on the floor laughing..."Our sweet, Frill. I wish I could have been a fly on the wall. I never would think you would curse at a doctor, much less throw something." At least I was entertainment for someone!!!!!!
So I'll probably bring donuts or something on Monday.
I'm trying to keep my chin up. I want to think positive, skin healing, skin building thoughts this week.....and live in a tub of lanolin, coconut oil, and everything else skin good. Oh, and drink tons and tons and tons of water. Tons.
One question for the pros - the 60g of protein recommendation, how are y'all fitting that in? I tried to ask the nurse about protein. Her response was along the lines of, "Eat three servings a day, a handful of nuts, some chicken, you know." Umm, you are not coinciding with my research. Just move on with your unhelpful speech.
I truly did not start off a jerk. I guess after a year I'm more bitter and wayyyyyyy less patient. And my body issues were just red, raw, and screaming that day.
I think I can, I think I can, I think I can. This is the last of the treatment part.
No one told me about not losing more weight. I've lost 30+ pounds since FAC started. Today I actually hit "normal" - which has been great for my LE - for the first time in 5 years. If I could do another 20 during the next 6 weeks, I wouldn't complain.
Imkopy2: You and me - we're going to rock this!
LifeAloft: Hi!!!!!!! I made a career change at 42. It was the best decision ever. It's a little weird just being 6 years into my new job, but I don't regret it at all.
LoveMyVizla: Another familiar face!
How is the seroma doing? How are you doing? Were you able to finish?0 -
Hey Frill! I should find out tomorrow if I'm able to get my boosts. I'm having an issue related to my seroma, but I don't want to freak anyone here out by describing it. I will say that if your nipple gets really sore, this stuff works to take away the pain. RO recommended.
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Frill, I was so scared before rads but it's turned out to be pretty easy, even with the snorkel. I'm a little pink but no burns. Using Miaderm twice a day. I have 5 more to go out of 21 and then 5 boosts. I would SO love to lose some of the weight I gained over this last year from not exercising but I'm trying to let myself continue taking it easy without too much guilt. Easier said than done, especially when none of my pants fit. So thankful for elastic waistbands on longskirts and oversized Tees.
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serenity ~ glad you mentioned the sleeve. I need to get myself to the local place to get fitted for one. Did insurance pay for yours?
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Hi, ladies; Sorry Frill, that you had such bad experience at your sim.For what I heard that is the longest visit to RT area. As you, I still have my doubts and my head will explode if they don't give me answers which satisfy my brain about RT procedures and the dosage. The more I read the more I get scared. Besides, the professional team know they are working with sick and tired people who have been battered by the medical system and they must be patient.
I was supposed to begin tx on September after I paid the hospital $1,267.14 as the 10% deductible fee. (I received from my RO the cost of the tx including the special CT and all the stuff they usually include in the tx (such as X-rays, other CTs, rads tx (28), the boosts are separated). After the initial explosion, I told the secretary to take me out of the list. She then gave me a list of places I can get donations to cover my expenses which I won't even consider. I just checked every one of the items. I kept reading and reading, and couldn't sleep. LE risks increased in 40% as well as the damage to the implants. And she didn't care to send me to a LE specialist. I am so mad with this lady RO. I thought she was more empathic b/c she was female but I was totally wrong.
I am looking for a new RO but she is on vacation and I will have my appointment with her on November. I will go to see this female doctor and ask her if she will reduce the dose (she is giving me the full dose of radiation for my all entire life without considering that I will have to keep receiving mammograms, X rays, MRI and CT in the future), stop the machine so that normal area is not irradiated and she promises me that she will not radiate the axilla b/c I am starting to show some LE signs and I need my right hand to keep on working. I don't want full flare of LE.
Check with your RO the new guidelines to see if you fall in the revised criteria. I reach almost all the criteria. But for me I won't expose myself to such an amount of radiation because the risks outweigh the benefits. I am using hormone therapy and that shrank the tumor to half the size in three weeks. I am still using it. My CA 15-3 was high and it descended to normal limits. I just got the results of the mutation test and mine came negative. So, I will skip it if I can and if the RO does not agree with me on my conditions.
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I meet my radiologist on 10/11 and plan to start shortly afterwards. (Not sure how long they start after first appointment
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s1d1c1u1 been thinking of you... hope you felt better after some rest!
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Welcome Snowflake. They generally need a week after your sim to plan your radiation.
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LoveMyVizsla - OMG, I was just going to post asking if anyone's nipples were getting sore! My RO is on vacay, and I was going to have to talk to a doc I'm not really crazy about today.Thank You! (I've been thinking of you a lot, trying to send you positive thoughts what with all the long drives, esp now that it's been rainy here in Seattle! Blarg! I hope the other issues are able to be dealt with so you can finish your treatment! {HUGS})
Started week 5, getting red... :^/ Been slathering on the Miaderm 4-5 times a day now and going braless as soon as I get home. The combo does seem to reduce the redness, well til the next days zap...
Hugs to all you lovely ladies! I have been so busy running to rads, I just haven't had a chance to post as much, but I think about so many of you during the day, and esp as I lie there on that cold, hard table with my snorkeling gear! Helps me to relax.
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what's SIM
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thereisnodespair thanks, dear! I feel so much better today. Took another pain med last night and actually slept through entire night! I can't remember last time that happened. Never had sleep issues until I started cancer treatments. I had no problems putting my arms above my head for rads this morning, which the techs thought I would.
Snowflake67 Sim= simulation. Where you do a cat scan and map out the fields that are to be radiated. you will then either be marked with sharpie or get some tiny (blue freckle) tattoos that the techs will use to line you up correctly for each radiation treatment. the hardest part of sim is keeping your hands above your head for 40 minutes! My hands and arms were completely numb.
Sabrina
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Sabrina is that done on my first appointment ?
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First I met with my radiologist oncologist who walked me through my treatment plan, side effects, pros and cons and such. A few days later I went in for sim. Took no more than an hour. Then a week later went in for a practice run. It's exactly like your radiation treatment without the actual radiation. It's just to make sure that everything is lined up properly and then I began radiation the very next day.
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B"H
s1d1c1u1 u slept through an entire night! that sounds like heaven.... i too just can't sleep, no matter when i go to bed and how exhausted i am - comes two or two thirty a.m. and i am up.... keep saying i am doing fine (i really am) but somehow it must be getting to me if i can't ever get through the night!!!! hope next time for you will not be because of meds but because you have finished the rads and OVER all this!!!!
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hi ladies,
Just stared my rads Monday. 3 treatments done of 33. Have to be on the snokle and wondered if anyone else gets a metal taste in their mouth after treatment? It does not go away for hours. Yuck!
My rad time is so nice and considerate during treatment, feeling lucky to have a good team after seeing some stories of not so nice techs.
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I don't do the snorkel thing, I'm just asked to hold my breath during each zap, but I always have a metallic taste. It doesn't go away for me. Doesn't even bother me anymore.
I'm so lucky, my techs are amazing. However, I'm not terribly impressed with my RO. He's such a scatter brain and never can recall anything about my treatment. Last time I saw him he was sure I had only had 6 treatments when I had just completed 15 and he couldn't remember if we were treating my auxiliary (we weren't). I went from having the most amazing oncologist to having this scatter-brain for an RO. I am not at all happy with him, but I only have to deal with him 1 day a week.
Sabrina
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good to know I am not the only one with this symptom. I asked my RO and he said it does happen to some patients and should go away as I get fort her through my treatment or I will just get use to it.
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TNPotato, thanks for the shoutout and good thoughts. That ointment totally takes away the nipple pain. Look for that pain killing ingredient, praxomine. We have been spending two nights a week in town, last week, this week and next week-the final week. Helps break things up. Went to Kerry Park the other night for the city view, went to the Museum of Flight today.
For the newbies, I asked to have my initial RO meeting and sim all in one day, since I don't live close to my cancer center.
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ayr1016 - My insurance covered most of it. They did require a prescription that my BS provided.
thereisnodespair - I take melatonin to sleep. My MO suggested it during chemo.
12/~20. Only 30 mins on the table again. No trainee today. I'm getting some spots that feel a little sensitive. A spot treatment of Miaderm makes that feeling go away. Otherwise, I apply Miaderm twice a day.
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Lovemyvizla - how did the CT go
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Hi all- I've been so busy driving back and forth and finally have a chance to read through all these posts. Just finished day 11/30. I'm a teacher and just couldn't work through this, so I'm on leave. I feel for those of you working a stressful job while doing this. I was unable to work with the drive so my days are completely about the radiation now as it's about a 5 hour trip with driving and appt. I don't get to Seattle much normally, so my mom and I have been breaking the day up with visiting great coffee places or shopping. My daughter and I made made a long chain with 30 rings on it and we wrapped a picture of a different bible verse in each one. Each day when I come home we break another ring and I say that verse through the breath holds the next day-it is what gets me through. I live each day to break the next ring. Who knew that chain would become so important
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Oh, and I just wanted to say I'm so sorry to all of you experiencing a lack of support. The Twilight Zone is such a great way to describe it. I have one sister and 4 brothers. My sister has called me once (since my diagnosis in May) and I have two brothers whose wives have contacted me a few times. Only one of my brothers has reached out and called me. Some of my closest friends went MIA and I just have one very close friend in CA who I speak with probably once/week. I have a few other friends who text me here and there and ask how I'm doing. Thankfully, my mom has been there for me and my husband has been OK. My colleagues sent me a beautiful card and some gift cards for gas, which has been so wonderful-but overall- It has been such a hurtful experience. I try to forgive, because I know they don't want to hear about it over and over and also I think they just don't want to think about cancer, but it has been enlightening who has been there for me and who has not. I sort of thought this was only happening to me, but after reading your posts, it seems I'm, not alone. I'm so sorry cancer is so hard and seems to be lonely too!
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I have little support-
. I try to tell myself maybe it's because it's only a stage 1. Again people have their own life to live and it's not about me and what I'm going through.Spouse this week was more concerned about getting grades in than listen to me, go to an appt or read my pathology report. (He is a teacher) He says he has his own issues to be concerned with-
4 siblings-2 no contact and 2 limited. Mother is more emotionally abusive than helpful. (In nursing home)
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Just a general question - is it hard to wear even a shelf cami towards the end? I've resigned myself to living the uniboob life during this, and got camisoles. I'm wondering even that band under the boobs, if I had a really bad sunburn, I wouldn't like that either. I was just wondering how y'all were handling this. I wish I could just go topless. Lol. I prolly will as much as possible. More goop, more absorbing.
Mariangel43: You just gave me a whole new list of questions. My RO is just going to loveeeeeeeeee me. I never thought to ask about the amount of radiation vs. total amount over my lifetime. And I truly did not trust *anything* she had to say to me about LE. Not that I think she was lying, I think that unfortunately she may be woefully underinformed and underexposed. I asked my PT to go to the big doctor planning meeting and she said she would. She said sometimes she goes to them. She doesn't understand a lot ot the technical stuff, but she can speak to the LE issues and pressure them about my specific issues.
Myraknits: I have Miaderm, too. I was pronouncing the name wrong, lol, my RO told me, because *she* went to school with the inventor. *eyeroll* I am definitely going to be slathering that stuff on in between the lanolin. As much stuff as my skin will absorb it w
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CT was done in no time. RO came in and said she thought it had shrunken (the tumor bed). Yesterday she gave me comparison pictures and she was right. So, she is taking two whole breast treatments off, and adding them to the boosts. So I will get 60 gray, total. I read that most patients get 45-60 Gray.
As for lifetime dosage, it's my understanding that each body part has a lifetime dose. So you could get 45-60 on one breast, and the same amount on the other breast.
I think the nerves to my nipple are finally regenerating. I still have numbness on the underside though, which is where my incisions are. I can't feel the cold of the lotion when I put it on there.
I'm sorry for those who aren't getting the support you need. I've been keeping a cancer blog, and have over 30 friends who subscribe to it. I don't get comments from even half that many, but my close friends have been very supportive. My photography friends are ready to drop whatever they are doing to go out and shoot with me when I feel up to it. My husband has been supportive to the point of annoying sometimes. My mom and sister took turns with me for a week each when my husband went out of town. Everyone handles the stress of cancer differently.
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Although I am fond of the "Twilight Zone" concept, I am also starting to see cancer as a gigantic light shining on each one of my relationships and parts of myself. A light that revealed who people really are underneath the surface niceties, politeness and the everyday.
I see parts of myself the same way--when the light turned toward me, it revealed strength I never knew I possessed but also revealed my tendencies to allow behavior in others I should have set better boundaries with. So going forward, I'm letting the light lead me.
To those who saw fit to ignore my illness, they will be treated accordingly--with a polite distance. For myself, I won't be a doormat for the people in my life who don't treat me with respect. I endured cancer treatment to save my life--a life worth living, not a life that contains people who don't treat me with love and respect. How can I return to a "BC" (before cancer) mentality, since cancer in its wisdom has shown me the light?
I cannot.
Love, caring and strength to all,
Marcella
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B"H
MarcellaPa - yes! so beautifully stated! in many ways the BC is a gift, and when people talk about getting back to "normal" i think that there has to be a purpose to all this "difficulty", i want to grow from it, learn and be a better person
i absolutely agree it is just as you describe, a big light that reveals a lot - light is GOOD so we can take it to a good place, a place where we can better connect and support the amazing people who chose to help us through, a place where we are not burdened by relationships that when a bit of darkness appeared chose not to shine at all....
surely the wisdom gained from BC is to value each day, and to look for the positive experiences and values and people that can enrich those days...
thanks MarcellaPa for your insight. in the begining i was so overwhelmed by the friends as expressed here MIA that it felt that was upsetting more than the DX itself... but now i am learning just to focus on the good and distance from me the negative... and to strive to be the kind of person who can go beyond myself for the needs of the people i care about.
hope you and all of us find those special people who will shine very brightly
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Marcella!!! I love it, beautifully written!!
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