October 2011 Rads
Comments
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5kidsmom, I absolutely know how you feel about the damn pink ribbons - just when I am feeling normal, I sometimes see some pink ribbon or pink water in some fountain or pink products in the store and it makes me feel grumpy. I feel a lot of guilt about being so emotional, because I know I am one of the lucky ones. I don't need chemo and I just had a lumpectomy and DCIS isn't invasive and mine was small and not multifocal. But I do not feel lucky right now, just really sad. And embarrassed because I am very teary, sometimes having to hide it at work. I am dreading rads all out of proportion to what it is, because I know there are some people who don't have much in the way of side effects at all, like katehudson from the Sept group.
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Aw guys, I'm emotional too. Partly from this, it's October...Ellen Degeneres calls it pinktober, and she's starting to annoy me...I watch Bonanza reruns in her time slot now instead. I've just heard enough. I don't want my whole life to be about cancer, unless it's a day that it has to be. Worried that rads will mean every day. Husband is NOT all that supportive, and that makes me really sad (and ANGRY). I'm on Day 5 PFC, so still really down from that. Anxious about mapping tomorrow, port removal on 11/1 (my port has been REALLY problematic from the beginning), just about to run out of sick time, so financial concerns kick in, and I find myself having to be tougher than I really am about working. I just wanna go back to bed today!
But...I'm going on Friday to pick out my new puppy! My animals, 2 dogs and 2 cats, have been my source of comfort and affection through this whole mess, and I'm really looking forward to picking up this new Golden Retriever. He's a gift from a friend, to celebrate finishing chemo...and as a validation that we all believe I'm going to live the 15+ years needed to care for him! I'm thinking of naming him Jasper...Jazz.
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Does anyone know if radiation for breast cancer affects the throat? I'm wondering about whether I'll have a running sore throat. Is the throat usually a bit zapped along with the collar bone?
I'm asking because I think the prohibition on spicy foods and alcohol for radiation therapy may be connected to whether one's throat is going to get zapped.
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No alcohol during rads????!!!! wha??!!!
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Natters, it is a dreadful thought. I got all my first info about my rads from md anderson's booklet and in it it twice says no alcohol during rads. I thought of phoning them up for an explanation, but I quickly realized I didn't want to hear it. It just is not advice I am likely to follow. Suppose they said that Rads would make alcohol appear as toxic fumes that can kill cats! I'd be in a real fix. Better not to know. But then i saw something from the American Cancer something and it said no alcohol if you were going to be zapped in the throat or bladder.
That makes some sense, but it is indicative of md a's attitude to alcohol that no one explained that. As far as I can see, the first three really evil things are the devil, tobacco and alcohol. -
Abatellik - I am not on Tamox yet. My MO said to come see him toward the end of my radiation. Marni - welcome! I'll definitely be posting thru November since my last treatment is scheduled for Nov. 28.5kidsMom - I totally see what you mean. I love work because it can take me completely out of thinking about cancer for a while (unless I check this board on my lunch break, which is what I'm doing now, ha!). Last night I had my first big breakdown in several weeks and blubbered on my husband for a good half-hour. I try really hard to keep my emotions in check, but sometimes they spill over (I started my period yesterday too, so I'm sure that was a factor, LOL). Robyn6463 - I'm so sorry your husband isn't being supportive for you. This is such a hard thing to go through treatment. What a nice gift from your friend. A new puppy sounds like so much fun. I'm off to #6 of 33 in a little while. I'm finding that certain bras don't feel "right" on my skin when I put them on, but so far no redness yet.
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Hi Everyone,
I'm coming in just under the wire - scheduled to have my first radiation tx on 31 Oct (should I show up in costume?). I had the planning/marking session today, and simulation on the 27th. Not sure how many tx I get, but I think she said 6.5 weeks worth? I'll find out on the 31rst.
My radiation oncologist told me that the worst part of tx would be having to come to UCLA each day - for me - not so much. I work literally across the street from the rad onc building, at another UCLA facility. So I consider myself lucky - I'll just be able to pop over during a regular work day.
Today is actually my 2 year cancerversary - I had surgery/chemo 2 years ago, and just recently got a local recurrence on the MX/recon breast. Since I didn't have rads the first time, they're giving it to me now.
Best of luck to those of you that have already started treatments!
Sue
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OK, #5 out of 36 done. No wait today! Woo Hoo! They've done some "adjustments" to the schedule. The hospital I am being treated at is replacing one of its two treatment units, so instead of running the department until 5, they are scheduling later into the evening. My new appointment time is a little later, but I much prefer a REALISTIC appointment time.
Apparently, this week they are accommodating some more intense treatments that take longer and are done twice daily- those 2 patients are getting treatments only this week.
I'm so glad to hear that my experience is unusual- unusually long wait times are definitely unacceptable! The staff is super nice and apologetic. I've been cancelled twice because the machine was down- one treatment is being made up by adding a Saturday, and the other treatment added to the end.
Even though rads are physically easier than chemo, I have been having a much harder time with rads emotionally. I think it's just the culmination of all the treatment since March, and the reality of dealing with cancer every day. I will definitely be ready for celebration and a VACATION when this is all over!
@Teresa- They take my extra pictures once a week to check alignment, so far have not needed any adjustments (but then again have only had 5 treatments) So sorry to hear that you needed more surgery than you thought you would need, I think you're very smart to wait until after rads to make a decision on more surgery. The same thought has crossed my mind, but am waiting until December to see how things are looking.
Yikes, no alcohol? No one has mentioned this to me, and I DO enjoy an occasional cocktail. @Tarry- I am also not sure I want to know the answer to that one!
@Robyn- enjoy the new pup! Sorry you're having such a difficult time. I often refer to my beautiful girl (german shepherd) as our therapy dog- not formally trained as such, but brings us so much joy!
@lovetosail good luck as you start. I get treated in the same hospital I work in, and only a 15 min ride on my day off- that is a definite plus, I know some people have to spend so much time on travel.
Stay well everyone!
Jan
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Hi ladies; hope you are having a reasonably good day with no Rads SEs:-) I am 12 out of 30 rads! So far my appointments have been quick i am in and out in less than 30 mins!! I have scheduled my appt to the end of the day at 4:30pm so that i can go home after. Just like most of you, i feel like Radiations are much harder emotionally!! I feel like i am reminded that i am a "cancer patient" every single day!!! I am starting to experience the fatigue!!! Working Fulltime and having 2 small kids aint helping:-) So far no skin reaction, just a little "bump" on the area/SNB scar, its external, planning to show my RO today (i see him every thurs). I use Miaderm and corn starch ocassinally. I also HATE my commute!!! The center is close to my house (abt 20 mins drive) but i work in the city and live in the burbs, sooo i have to leave work at 3pm catch a train (20mins) then get off take my car, drive for another 30-45mins to the center!!! I literally pass my house on the way:-(
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Mapping, tattoos and CT today. I'm not as bothered by the tattoos as I was afraid, they really are tiny, but they did sting quite a bit...maybe I'm just really sensitive today since final chemo was just last Friday. I really like the RO I met today, the one I met previously has moved on, but I'm happy with them both, and the tech. She was awesome. A little wait for the CT as there was an emergency, but I had some lunch and visited with my SIL who works at the hospital. Not a bad day overall, but I'm glad that it too, is behind me! Now I just wait for them to call with my schedule!
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I meant to say that the RO commented that sometimes radiation can be even harder to deal with than chemo, because it's a part of every single day, and it goes on for weeks, and by now, we've already had cancer for a while, so it's starting to get old. He was pretty cool about it all. I know that six weeks will fly by, especially as holidays approach, so here goes!
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good luck Robyn! I got my tattoos yesterday - yeah they did sting a little!
@Jan - yeah we do have it a lot easier than others since we work where we get our radiation tx!!
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abetellik. I too have worn a bra throughout and have my last rads tomorrow. No problems. Would be more problematic to not be wearing a bra. Particularly while horseback riding
. Like some of the others I have the scrip for Tamox, but MO suggested waiting until after rads to start -- for no particular medical reason, just to have a break.
Marni -- welcome -- I'm barely ER positive (3%), but negative on the rest.
Natters -- It's not just you. I've been more emotional these last couple of months, and reading the various threads, you'll see the same comment from others. Hang in there. Re the heart and lungs -- yes, they're pretty careful. After my initial set up where I was on my back, they decided to redo it with me on my stomach, due to that very issue. Others on this thread have noted other techniques that are being used in their situations. Everyone's situation is different but it it's certainly an issue to raise at your set up next week.
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I start my rads on Monday. 25 with 5 boosts. It's finally hitting home! I'm already stressed over how I'm going to manage this with my work schedule. It's going to be very difficult getting to my appts every day. Anyway, I'm so glad I have this forum for a source of valuable information because it sure hasn't come from my treatment center. You'll probably be hearing alot from me.....
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It's funny how so many of our experiences are different. I had #4 today, will get my tattoos tomorrow or Monday. RO didn't want to do them until they made sure everything was going to be absolutely perfect. I get the bolus every other time, but not for all the zaps, just some of them. Definitely the node near the collar bone doesn't get it but another place doesn't get it either but I'm not sure where that is. My neck is getting very tender to the touch but you can't see anything on it. Not even pink. Just hurts. In my case, because I had an MX, they are trying to get the rads on the skin, so my doctor told me to expect a reaction, he said he could almost guarantee I would get one. I'm still hoping he is wrong!
Nobody said anything to me about not drinking or no spicy foods and it wasn't in any of the paperwork I got either. Which is a good thing because chemo took away all of my "sweet" taste buds and only left me with a taste for spicy food! I don't drink a lot but if I want one, I'm going to have one.
I get x-rays every other day when I get the bolus, takes a few extra minutes but not too bad. I have the first appt of the day at 7:45, am usually done and out the door by 8:15 or 8:20 on the bolus days.
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Ladies, a question for you, does anyone take vitamin D3. I bought some today, 5000 IU, but don't know if that is too high a dose, too low??? Any info will be appreciated.
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Ceeztheday, I have asked about Vitamin D and was told (by 2 different docs) that the amount in a multivitamin is fine to take but not to take more than that. Don't know if it would apply in your situation, but never hurts to ask the doc.
I am having a lot of acid refulx lying on my back for radiation- maybe this has something to do with why they said no spicy foods? I haven't heard that, nor the no alcohol, although I have read that having alcohol 3 or more times per week ups the recurrence rate by like 30%. So that is not a chance I personally want to take.
To those of you starting rads soon, I have only had 6 of 33 so far, but I have found this to be much easier than chemo or surgery (although the 3 hours drive each day is killing me!). The nice thing is that we can count it down and then be done. I too don't like facing the cancer every day. I try not to think about it and just focus on the fact that my cancer is GONE and this is just a precaution...hopefully many of you can say the same.
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Hi all,
I just finished chemo yesterday and will start radiation mid November. I've had an initial visit with my RO and have another with him next week. Anything you would suggest I ask him or talk about? There was no question that I have radiation. I've had a mastectomy as well as the chemo. Though the lines on the tumor were clear and it hadn't spread to any lympnodes, I have metaplastic cancer which is very aggressive and needs a SEAL TEAM 6 approach.
Any tips you have would be great.
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Nans, I also will start rads in November, but am happy to have the October thread to gather what I need to know.
I have so much problem staying still when confined - panic easily - would love to have a water bottle like a camel pack to sip...not much chance of that i'm sure. hope I can be somewhat upright. My incision is at the 11 o'clock site and back away from the nipple - lump was not detactable by any doctor. no nodes, so am hoping it won't be too long and maybe from the top angle. i will find out next week...have already been told over the phone to take sedative for anxiety.Anyone else with claustrophobia and anxietey getting used to it? I pray that I can take it in stride. Best to all for this part of the journey.
Joan
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I don't have claustrophobia, but do have anxiety. I was scared stiff the first time, but am fine with it now. It is easier than some of the tests like MRI's IMO. Had #12 yesterday and am definitely red now. And have a couple tender spots. Still not too bad though, but 16 more to get through. Using aquaphor with lidocaine that the RO nurse mixed up for me. Maybe something else would be better? Or maybe it's just the way it is,.
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Joan811 - Oh yeah, claustrophobia and anxiety are in turbo mode these days! I took an ativan before my planning appointment at 11 yesterday...and by the time I was in the CT machine at 1:30 I was trying to ask the nurse to get another one out of my purse...Fortunately the CT only took a few minutes, and they moved me around enough that I was okay!
Abatellik - my MO recommended 1000 units of vitamin D3 a day, but my nurse midwife said 6000. I'm going with the MO.
So tired, but trying to enjoy this little break between final chemo and radiation. I've only got one drs. appt next week, pre-op for having my port removed on the first. It's going to feel like a vacation!
Today is the day I pick out my puppy!!!!!! So excited!
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Good morning, ladies!
I'm at work, so no time to talk, but I wanted to share this news piece which aired on NBC last night:
http://www.nbc.com/news-sports/msnbc-video/2011/10/radiation-may-cut-breast-cancer-recurrence/
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Marthah thanks for sharing that link... my sister called me last nite to view that story but by the time i turned on the TV it was over:-) am at work too:-)
Good day All!
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Started my rads on Mon 10/17- and today will be 5 of 33. So far so good. The tx have been quick and fairly simple. Starting to get a little itchy- but it's where I had to wear a Holter monitor (heart monitor) patches for a month, so the skin was already irritated from the adhesive. Slathering with aquaphor everyday post tx. Hope everything continues to go well. Thanks for all the good info ladies!
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I was diagnosed with ductal carcinoma in May and have gone through radiation very well. Now it is October and they found a very small site 3 mm on the other breast. Has anyone else had this happen to them. I am on Tamoxifen. Do I have another lumpectomy and radiation? Can I take the Tamoxifen through radiation again. If I cannot take the tamoxifen, will that increase the risk of reaccurrence in the breast that had radiation? Should I just leave it and hope the tamoxifen will keep the new cancer in check? I have so many questions on what to do. If anyone has information on this, I would appreciate it.
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Hey everyone, I hope I can join in, I start radiation on 10/31/11. Had my first visit with the doctor yesterday and a cat scan today. I was under the impression that we couldn't lose or gain any weight while going thru radiation but dr. said it didn't matter and if I wanted to continue to diet I could. Was anyone told differently.
Thanks!
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kk59jk and mccrimmon, welcome! I am at the cancer center waiting to be called back for lucky #13 of 28. kk, my onc wanted me to start tamoxifen now, while doing radiation, but i am havinf side effects fromherceptin si i wopted to wait until i am done. i would choose to get the cancer out if i were you whether that means lumpectomy and rads or something else. take care of it now while it's so tiny.
mccrimmon, are you my buddy from philly? how is everything going?
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Hi Kay, Yes, I am your buddy from Philly. Things are moving along slowly but we're getting there. It hasn't quite been 4 weeks since the end of Chemo but I still check the mirror every hour to see if I've sprouted any hair. So far all I've got is some white fuzz above the ears, makes me look like an old man. LOL. Good luck with lucky # 13, are you having any side effects from this at all?
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I am red, but not dark red and only one small spot that is tender so far. I am 12 weeks pfc and only have about half an inch of hair
No one said anything specific about weight to me.
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kk59jk,
Welcome. It's hard to say without knowing more about your prior diagnosis & treatment, but you really need to put together a team of providers that can care for you -- breast surgeon, medical oncologist and your radiation oncologist Don't be afraid to be your own advocate, request second opinions, and get the tests you think you need.
Is radiation the only treatment you have received? What were the results of your initial biopsy? Did they do an oncogene test?
The two best sites I look to for information are www.cancer.gov (National Cancer Institute's website) and www.cancer.org (American Cancer Society). Watch out for all the quack stuff on the internet, too. Be sure any research you read is from peer-reviewed, professional journals.
I look forward to hearing more about your situation, and wish you all the best!
Martha
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