October 2010 rads
Comments
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I was told by a male friend...whose old girlfiend from years ago...was told to use Emu Oil....I have looked it up....I think it's worth trying...
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Hey ladies, I'd like to join this group (well, I'd really rather not! lol!). I start rads next Mon., the 25th. Had my planning session yesterday and got 4 new tattoos! I'm having my left mx side done, and the clavicle(sp?) nodes. My arm hurt so bad being up over my head for so long! Thankfully the actual tx go pretty quickly. I guess I better do some more stretching exercises! I'll have 33 tx, and be done on Dec. 9th.
Rad onc said after chemo and rads my chance for a recurrence is 5-10%, Then he said probably closer to 10% for me--not sure why he said that? Then he said there is a 1% chance of getting cancer from the radiation! It's hard to believe that curing cancer can be so deadly! Sheesh!
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Diamond girl--I want to add my 2 cents and say I agree that no one but the techs (or rad onc) should be in the room when you are lying there half naked! Makes me angry to think about it! My techs are all women and always keep me covered as much as possible. Had radiation on my backside last year for colon cancer, and they were so nice. Told me yesterday that they were so sorry to see me back again.
You definitely should tell someone--do you see your rad doc weekly? Tell him for sure!
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Thought I would check in - 16 down - 18 to go - almost half way. A bit sore - odd because cannot really see anything but I can feel it inside. Here they do 13 regular - now I am into 8 boosts and then the final 13 regular again. Diamond Girl - that is awful what happened to you - I am so lucky I have wonderful techs - they are all women although my sim/tatoos were done by a guy -he was so nice. He is usually on the other machine while I am there. I am tired though - and having finished chemo 5 weeks ago - I really wish I had more hair! Any ideas on how to make it grow faster?????It appears to be coming back on my legs - whopee - how about my head? But others have it much worse than I - I do not have small children etc depending on me each day - I can go to work and then come home and simply sit or sleep if I want to. Myhouse is a mess though - the vacuum cleaner does not hold much appeal after a long day at work.
Tomorrow is Friday - yeah for that and two days off from rads! Everyone have a great day and weekend!
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Tina ~ a warn welcome here. Thanks for reassuring me to report them. My 2 rad techs are snotty, I bring them goodies every Monday (3 times I've brought them food now) althought I had to have the CT and simulation done twice because of 2 weeks wait time to clear an infection.
It didn't matter what I say, they just don't have too much concern for other people which is really sad. Yup, I'm so convinced that the squeaky wheel gets oiled.
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I'm obsessed with my hair. My PT said Rogaine. Which was surprising, I thought he'd be more holistic. But, a thought. Temporarily, to jump start things, why not. Rosemary oil is supposed to help. Huh. Been rubbing away, nada. It's not the beauty thing for me, it's "closing the chemo chapter".
My rad techs are spotty. One I love, my heart always sinks when he's not there. One is surly, but I try to butter her buns. One is just majorly dismissive. I hate how they are such know it alls. When I've brought up shingles and AWS--hardly rare SEs--they reported the latter was sentinel node related (so glad they all have degrees in surgery ; ), and the former was an allergic reaction. Glad I was pushy on that. I worked my butt off to avoid neuropathy, I'm not going to let shingles do me in on that one!!
They did, however, call when I left one of my bags there.
As for shingles, I'm on an anti-viral, and honestly....it's not clearing up. Perhaps one day isn't enough, but at five times a day on meds, I'm sort of wondering if that's actually what it is!
Gosh, the weekends are a joy.
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Just checking in. I feel so fortunate to be having a positive radiation treatment... if that is possible. My rad techs are all women and so caring. I see the nurse and my rad onc every Thursday and they are both wonderful. My rad onc always tells me that I look "maaaarvelous". Unfortunately, I took a big slip down some stone stairs in our house this morning and was pretty sore when I went in for treatment this afternoon. They were so careful helping me on the table, etc. I had to go straight from there to my orthopedic surgeon for a little more radiation. Thank goodness nothing is broke so just lots of Advil and ice and hopefully be back running around soon.
Hair.... I am getting impatient waiting for more hair also. I finished chemo almost 8 weeks ago and all I have so far is fuzz on my head. Geesh! I remember that my hair stylist always said that masaging your scalp is so good for healthy hair growth because it increases blood circulation. I'm trying that alot but not sure it really is helping.
And so it goes.....
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Hi All! Just wanted to drop in and thank all of you for sharing your experiences. I have been reading your thread the past week or two to get ready for radiation. I will be starting Nov 1 and getting 37 treatments to the left breast, clavicular area, and axilla. I should be glowing by Christmas with all this radiation. I told the kids there was no need for a tree this year, I was just going to stand in the corner of the living room and glow!! LOL.
And I agree about the arm hurting TMarina! I thought I was going to die the last 15 minutes of that simulation between my shoulder hurting from my arm being over my head for so long and the back of my head hurting from that hard table!
Anyway, thanks again for sharing, I have learned a lot about what to expect reading what you all had to say.
Debbi
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I've had my tattoos and have another appointment on monday with the radiation oncologist. I have had a lumpectomy 6 mm tumor er+ pr+ her2 neg. onco dx score was 10. No chemo. I'll do the radiation and then on to 5 years of tamoxifen. Do I need to worry about protecting my thyroid during radiation?
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Hi Ladies....Hope everyone is feeling well.
Diamond i feel swolen under my arm too and i am only on day 3. I HATE having my boob hanging out. My tech is a guy and he is nice enough but kinda cold, nothing like the chemo nurses. They are not very concerned with keeping me covered and as you know i can't move. Today the pillowcase covering my right boob was hanging on by my nipple! Yesterday i was so wraped up in my johnny when i got off of the table it feel to the floor. I was so embarassed, i could'nt get out of there fast enough. I'm feeling a little nausea tonight is that to be expected? I thought this was going to be so easy and i hate it already and i won't be done until December 7th.Ugh....Cancer sucks
Betsy
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Hey all~~~I am officially a little more than half-way through my sessions (#18 today)---I think. My RO told me Monday that I was half-way done then with my 25, and I told her that I was told it was 33 sessions. She wondered if the boost did not get added to the info she was sent, so she emailed the other RO who did the planning but did not get a reply when I was there Tuesday. She called and left a message for her to call back and tell the new RO what the number was supposed to be. RO#1 did the planning, RO#2 is who I've seen thus far but she left the clinic effective this past Wednesday so now I have to see a new RO (who is a male) on Monday. I guess maybe he'll tell me then if I am supposed to have 25 or 33. If he doesn't mention it, I certainly will.
A few others have mentioned the shooting pains in their breast. I had that occur only once, but it was very painful. I do feel my breast throbbing often, esp. around my nipple. My breast is still tender and swollen, and I still can't sleep in my usual position (right side) because it's too painful, so I'm still using a body pillow for comfort and support.
Despite being told that there is no real physical basis for fatigue, I have been feeling significantly fatigued for the past two weeks. I'm still working full-time but am honestly finding it hard to make it there on time and to get a lot done. I can't take any time off right now b/c it's such a busy time and I have so much to do. By the time I get home, I am so tired I can barely move. I'm almost too tired to eat most nights, much less fix dinner. I wondered if getting B12 injections would help any. Has anyone found them to help any during/after rads?
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Diamond, speak up! Tell the techs that you would appreciate it if they would keep you covered once you're aligned. One possibility is a blanket over you when they're finished aligning you. My techs cover my chest with a pillowcase before they leave the room. If the cover isn't in a position that makes you feel okay, call them back and ask them to adjust it or put a blanket over you; if they don't come back, sit up. That will get them back in the room, and they'll have to spend more time aligning you all over. Before I sit up, I grab the pillowcase and whatever else I can hold against my body.
We had a similar discussion on the Sept. rads board. Someone reminded us: squeaky wheel gets the grease.
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I think that we were so relieved to be done with chemo that we underestimated the se's from radiation!
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MHP70- Sorry about the shingles. I had a small outbreak but declined the antiviral meds. I don't think the meds clear it up, they just prevent it from being a worse outbreak. Be careful not to touch the area and then your eyes. It is contagious and you can actually transfer the shingles. Hope it clears up soon. About the hair tonics. Check out the May chemo thread. Someone on there mixed up some crazy walnut concoction she knew about from her Romanian grandfather and said it was working!
Tina- Hey sweet lady! It's great to be back together again on this thread. We're getting there, aren't we?
Today my appointment was only 1 hour 45 minutes late. Jeez! This is getting old. I will talk to my doctor about it on Monday. Everyone is very apologetic, blaming it on the orderlies who get the hospital patients there late etc... Give me a break! I told them "we put men on the moon, we can figure this scheduling out"!
I have a question. I asked if they will check my blood as I go through rads. They said no, only the baseline bloodwork is necessary. Can this be right?? Isn't our blood affected by radiation? Isn't that why we feel fatigued?
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Hi All, I met with my radiation oncologist today and have my simulation scheduled for next week. Was told there is are unknowns about why the fatigue, but probably has to do with the energy needed to re-build. Anyway, rads start Nov. 16 for me and end around the end of 2010. Halleluja! I will be having rads along with last chemo tx to get through by year end. Halleluja! My best and most heartfelt best wishes to you all!! ~ Beans
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diamond girl: I'm sorry that you had this ecxperience. And I truly believe you need to be your own advocate. The others who have posted have described some of the best options. The first is really the hospital president-you will be heard and/or the CNO. There is also a supervisor for your area who you might also contact. Also some of the larger hospitals have a pt advocate for you.
I cannot say enough wonderful things about the techs in my area. They are very aware of privacy and have really tried to minimize exposure. When anyone wlse needs to come in the room, as one of physicists who was a male they asked if he could come in and explained why-they were having some concerns about the tx plan and both he and the Dr. needed to come in. They made sure the unaffected side was covered and asked before they entered the room. I hope your facility really listens to you.
I had an axillary node disection and also have the swollen feeling under the arm after tx 2. Feels better with lymphatic drainage and stretching exercises. I am getting CBC drawn every week as around week 2 is apparently when the counts start to drop. I had a problem with low wbc during chemo so they want to watch every week.
Hope you all have a great weekend. Am praying hair will grow soon. I didn't lose all of my hair, but now it seems as though I am losing what little hair was left. Little fuzzy hair is starting though.
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Hi All- I have ten days down on rads, 15 to go. The rads have given me few side effects and I am back to work.
Dmom- I am getting my bood work checked by the rads people. The nurse actually decides when. My first CBC was fine. We will check again next week.
The rads I receive to my "super clav" area has a block on it for my thyroid. This week after looking at some quality assurance xrays they enlarged the block quite a bit to cover more of my thyroid area.
As far as flashing my boob at people. People have pretty much introduced themselves to me as they have come in to the rads room. The first week someone was out sick so I had a rotating group. The only person that makes me uncomfortable is the student who comes in on Thursdays and Tuesdays. They asked me if it OK if she watches and I said yes. The part that makes me uncomfortable is that she is very nervous herself and hates to look at me. I think she is probably about the same age as my son. Also, since both of my boobs are fake and I actually lack alot of feeling in them I am sort of mentally divorced from that part of my body and see them as not really me.
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Good morning (from west coast),
Joan888 - sorry to hear about your fall, hope you are better now.
TMarina, Cindykaw, MPH70, BetsyP, Alca, CT124 and JFV - thanks for backing me up too, I had my regular Thurs meeting with rad onc. Initially he looked surprised (but the tech #2 told me before my session that she had reported it to the doc), as I was telling him what happened, his nurse kept chiming in. My doc actually said in verbatim "they are drs./physicist and it is the norm in the States that they will even follow the doctors inside to check/tweak the machines". I let him finish, let the nurse finish chiming in and then look the doc in the eyes and said "then I propose that I'd be treated differently, if there need to be any tweaking while I'm on the table, I want "off" of it. I do not want to be there while they are tweaking or calibrating the machine. If they need to get something or walk to the control station where the surveillance monitor is, I need to be informed and be "immediately covered". Then I turned and looked at his nurse and said "I know I have my right as a patient, right?". Funny, the incident that happened the day before, no one had apologized. This time the rad onc apologized twice and said that "he forgot how patient feels because he's been treating for such a long time".
Friday - the techs are not really speaking to me, I can sense the coldness. While being zapped yesterday, I could feel some pain at the rays was hitting me. I get 12 zaps coming at an angle from left side, I could feel about 3-4 zaps where is was painful, can't describe it. Like electricity/static hitting you. Then 12 zaps coming from an angle from the right. I fet 2 zaps that was painful. Now the machine was calibrated/fixed 2 days in a row. I sense something is not right.
Then when doc checked my L axilla, at first he dismissed anything wrong thinking it was my subconscious thinking. After telling him that it is not, then he felt the lump and said I could be getting an infection. Will wait and see.
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DiamondGirl - YES!! Way to go!! I'm so glad you spoke up. It must have been really satisfying to have the Rad Onc say he'd forgotten how the patient feels.
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Good for you, Diamond Girl!! I applaud you!
Kathy
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Alca, QCA - thanks.
Has anyone ever felt pain during the zaps?
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Beanius - you and I are again on the same schedule. I get my CT scan on Nov 2nd and I should start rads on Nov 17th. My original scan was supposed to be on Nov 8th, but I moved it to an earlier date for work purposes.
One more chemo treatment!!! YAY!!!
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diamond girl-way to go. I have a feeling that someone in management may have talked to all techs, so you have probably paved the way for others who didnt feel they could speak up. I am only done w 2 sessions, but feel nothing like you described. sometimes get "pain" but I can tell it is muscle spasm that I have had from expander.
what I am having is a really tight feeling around expander and a lot of pressure around expander-alost like I just got another fill. I am seeing RO on tues and then if it still is going on will go back and talk to PS. I dont know if it is from swelling and will go away. also know that capsular contraction is poss w RT. anyone else having expander discomfort etc.
thanks
Deb
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Deb ~ thank you. I have slight swelling on the breast too, I didn't have recon.
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Started rads this morning. I was in the building for 20 minutes. Got home about 65 minutes after I left, and that was with good traffic. Just tired! Didn't sleep well and had to get up way too early (for me)! My arm is still sore from the simulation on Wed., so I took some Tylenol for that and the headache that's starting. Might need a nap soon...
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I wanted to encourage everyone with arm pain and cording that quick PT assessment and management can make all the difference. I'm nearing 1/2 way through my treatment, and my cording is nearly gone. I see at PT once a week, nothing crazy.
Also, if you suspect shingles (very common after or during chemo), get on the anti virals pronto. I got mine under control just great. I'm really pleased.
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Good morning!
Had my first 2 treatments last week, and then the weekend off.
I wonder if anyone else feels as tho the environment for the treatments is similar to being abducted by aliens? (Haha). I really felt like I was being subjected to an alien probe. From the very cold steel atmosphere, to the binding of the feet, the way they draw on you, and use the laser pointer tool..to being exposed and your arms and head positioned. Then they scurry out of the room and the hum and movement of the machine. Really!
I never thought I would react emotionally to these treatments. I was so thankful that I avoided chemo, that I thought this would be a piece of cake. I assume that by the end of this week, after I've completed 5 more treatments, that I will be somewhat desensitized to it...but it really makes me feel creepy. And, I swear, I can feel it entering my body..I know in reality I can't, but it sure feels that way.
Hoping the miaderm cream will be worth it...been using 2x/day for over a week, just in preparation. Also use Tom's natural deodorant...hope that's ok.
At least I'm too old to be implanted with their alien spawn! LOL ;-)
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Designer Mom I get my blood checked every 2 weeks for my WBC. You should look into that
Gingen424 - Yes it is indeed strange but you will get used to it. it also helps when you have a good group of techs. They keep me distracted from what is going on. Hang in there ..it will get easier
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Gingen424 - I totally agree, you feel so alone in there.
Has anyone felt any of the zaps? I did on my #8 tx. 5 out of the 12 from one angle. 2-3 out of 12 from the other angle. I'm really concerned. I never felt it before then.
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MHP70
I completely agree with you. I had cording and lymphedema-both are so much betters with a couple of visits. made a huge difference
Gingen424-looks like we are on same schedule-I had 2 last week, will have 25 total. Yes it does feel like an alien environment, but have to agree w faybu-my techs are great and they pop in after every zap, so I never feel alone more than a few minutes.
diamond girl-I am not as far along as you and have not had that feeling. did you get pain or burning? I almost didn't want to go back today-was a long weekend-felt like rad side was really tight and swollen around the expander, but this am seemed better. I am wondering how next weekend will be after full week of zaps. so much unknown.
one question-have heard a lot about miaderm-is it prescription? I am using aloe and then aquaphor but hate aquaphor.
Thanks
Deb
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