September 2010 Rads
Comments
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Bubbalu - real sorry to hear about your issue. No, you shouldn't have to deal with yet another problem, just want to give you a gentle {{{hug}}}. I was thinking if it would be an idea to call some other cancer treatment centers like Mayo Clinic or some Radiology teaching hospital and pick the professors' brain? For some reason, I think that if you were to ask around in your own group of rad oncologist, they are not likely to point out something went wrong (it could become a liability if they talked too much)? So call around the Nation (use 411.com) and find rad onc and see if they will talk to you? I know it is a long shot, but worth a try just to get to the bottom of it.
About the Aquafor, do you use anything to cover the breast since it is so greasy? I don't want to ruin my t-shirts. I had to purchase new t-shirts because of the map that they drew on me. I look like Ms. Frankenstein.
Sespebadger - regarding the blue tat that you have in the middle of chest. My m-i-l had her eye brows tattooed and was not happy that it was way too thick. Another salon that she went to was able to tatoo the flesh color on her brow to do the correction, and you can't even tell the flaw now. So that's food for thought
Do you ladies have your Rad. Onc supervise any of the simulation or dry runs? Mine never showed up and felt like one of my tech was a pure "Greenhorn" ! - need your input please.
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Are the tattoos they do different for a lumpectomy as opposed to a mastectomy? I had a LMX, and I have 5 tattoo marks - they are more like a pinhead (or less) - and what's "mapping"??????
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Hi Bubbalu, A friend of mine gave me a copy of the AntiCancer book...wasn't that nice? I've looked at it briefly so far (just got it). Luckily, chemo made coffee taste terrible to me and green tea tasted O.K. (jasmine Green tea from Trader Joe's or Peet's doesn't taste like grass like regular green tea does to me), so I'm on a green tea kick. I Will ask the rad docs about red wine if I really start drinking up a storm!! As for clinical trials I have no knowledge. I do know that if I were in your shoes (where radiation isn't working for you) and if there is some other way to reduce your risk of recurrance, I would do it. I would do practically anything to kill this cancer and to make sure as best I could that it not come back. My chemo shrunk the cancer in by breast (compared pathology report afterward to original pathology and MRI report), so I am a believer.
My rad onc was certainly there during the simulation....doesn't sound right that he not be there.I got the impression that he was looking at my previous MRI and then deciding whre to x-ray and what area they should look into for the CT scan. Basically getting the right pictures so that the radiation plan would be most effective. He also came into my rad session today after it was over. He was drawing on me where the boosts will be aimed. Then the tech traced what the rad onc had drawn and made a template to use to focus the boosts.
As far as shaving pits....I was told not to shave in the treated area. My treated area starts about in the middle of one arm pit, so I don't shave there at all. And I occassionally remember to shave the other side. I remind myself that I will likely never see these techs again and they see so many patients they couldn't care less.
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I was eligible for a clinical trial at Dana-Farber due to my Oncotype score, but declined. It added on a lot of extra chemo and I just didn't have the energy for it. I was also going to do radiation and it all brought my recurrence rate down to 10%, so I figured I would just stick with standard treatment. If you are eligible and are unable to complete some other part of treatment, I would recommend doing it. They monitor you very carefully.
My rad onc was present for part of my simulation. I never saw her, but she was in the other room going over the films, or whatever it was, and checking over where they drew the dots before the tattoos.
I was also told not to shave in the treated area.
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Diamondgirl: You know I thought about the same thing - about asking in my own group. There are 2 radoncs and they stick tightly together. My first thought when this happened the first time was - something went wrong. Then when it happened a second time I gave up that idea. I got an apt. at the University of PA Abramson Cancer Center for next Tues. It's 5 hours away from here. I'm consulting with a radonc who specializes in BC. Meantime I'm going to do that call around thing you suggested. I didn't even know about 411.com. Surely someone on this planet has seen this before and knows what to do. I still have my suspicions here on this end, know what I mean?
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Thanks ladies, huh, my rad onc goes to different offices in a day and I was sure he was not physically there that day. It's worrisome that this medical group is running their practice that way, they just acquired this facility not long ago.
Also, about Jasmine tea, I go to Asian Groceries, they have them in tea bags (box of 100 tea bags) and they taste great (I give them away to my clients and they love them). The brand that I get is called : Asian Taste, they also make Green tea and it taste great also. These are the Jasmine tea from China or Hong Kong. I've also tried the Japanese green tea and I couldn't drink it, it tasted like grass.
I started a thread sometime ago called "Starving Cancer", it is about Anti-Angiogenesis
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Yes, most definitely bubbalu. You know about my issues also, there's a cloud over it too
Good luck on your search and researh on your tx. I won't be satisfied if they can't come up with a decent explanation, anything. God Bless - I'll say a prayer that you will get to the bottom of it.
Paula
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MelBell07
Have been off for a few days-bad rx to chemo which is why my rad start was delayed. I have expanders and will have surgery sometime after rads. I saw my PS a couple of weeks ago and he wants to expand quite a bit more before rad-his last chance to do this. so ab 2 weeks ago he put another 250 on each side and wants to do it again the last week of sept before I have the simulation etc done. I have never been this big but apparently tissue can shrink auring rad. Who Knew? He told me that I will prob have a diff incision for the replacement, however, scars can be fixed at that time if I need it. He also said that things will depend on how tissue reacts to rads, so while I wish I had clear answers, it looks like everything will also depend on tx. Did you need to have fluid removed during rad. I am also concerned ab that. also have a little swelling in my hand after last expansion but seems to be slowly getting better. Am worried ab lymphadema-have not seen anyone reporting this. Is anyone having problems??
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DiamondGirl - I had one session, mapping, where I had CT scans and was marked up with nine marks, Xs and lines; my RadOnc came in briefly. I had a second session another day that they called simulation; it was on a different machine - the machine that I would always go to for treatment. There, they took x-rays and added one more mark. I have an X on either side, above my waist, which they use to line me up; and 8 marks around my breast.The tech said my Dr. would be by during simulation but I didn't see him; he may have gone into their safety bunker to see the computer. He said he'd see me once a week during treatment.
sespebadger - I had radiation tattoos removed; that's always an option. Mine were cut out and the scars show; but I understand that with laser removal you won't have a scar.
I got through my first treatment today. I have told only close family and friends about my cancer; that's what's comfortable for me. I pulled into the parking lot of Rad Onc today and saw an acquaintance go into the building. I left. I phoned from another parking lot and told them I'd come back or wait but I wouldn't go in while she was there. A tech called me back shortly and said she'd left; she'd finished treatment that morning and was dropping off cookies.
I have aloe plants in my garden. After treatment, I sliced one and slide it around my breast; it dried pretty quickly. Is that how I'm supposed to apply it? How often?
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Cindykaw
I do am delayed until the middle of Oct and orig thought would be there by now. I too have found so much info to help w the process. Oct is right around the corner.
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Janet,
I had dose dense chemo and it does not always make you lose all hair-everyone reacts differently. I actually kept some head hair, and then slowly lost hair on the rest of the body. Axillary hair and leg hair were the last to go for me-my daughter and I were laughing that I still need to shave. I will say that for me when I started to lose head hair, that was one of my worst days. I hadn't cried til then, so I think sometimes things hit harder on different days for different reasons. This is a lousy disease, but without the stories and support of the people on these boards, I would be at a different place. I have found incredible women and support here and hope u will also
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I went today for my simulation. Here they give you a "goodie" bag with products but they also give you a list of things you can use - you do not HAVE to only use what they give you. I was marked up a bit - and got two tatoos - one right int hemiddle of my chest - and one more under my arm. Not painful. As to male/female techs - I had a male - young enough to be my son - LOL I will be 50 next month - but he was the nicest and kindest person - everyone there has been so far. Always trying to keep me covered as much as he could, etc and asking if I was ok - I am not used to being fussed over. My Rad Onc was there - he did some of the markings. Had some Xrays and a CT scan - they will call me next week and hopefully I will get started about the 1st of Oct - probably should start an Oct thread but have learned alot from this one. Onward I go.....now if I could just get my strength back -
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Cindykaw, Glad to hear today went well. I think it is good that you won't start until Oct so you have some time to heal and gain your strength back. Try to exercise some each day and that will help with getting back some energy. Hang in there,girl!!!
Bubbalou, I am so sorry for all you are going through with the rads. My sister went to Mayo in MN and got great care and says they have a hotline that you can call and talk to their specialist and asks questions. I would think that would be a good place to start. Good luck and hope something pans out for you.
Good luck to all and I am praying for us daily.
LOL, GINNY IN SC -
I am new posting on this thread but have been reading and learning alot. Thanks to all you ladies for sharing. I am sure that I will have lots of questions as I go through this next treatment journey. I had my first visit with the rad onc yesterday. I go back on thursday for my CT and markings, etc. Can't even remember if my sim will be the same day or another. I just finished my chemo on August 31st and they don't want me to start rads until 4 weeks from then. I am feeling good and just want to get started ASAP and get done ASAP. Looks like I am in for 28 rads. Our son is getting married on December 11th so want to have plenty of time to get my energy back, etc.
Cindykaw- maybe it is time to start an October thread.
Joan
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CT124 - Yes, I was over-expanded on my R side b/c I was told rads shrink the skin/tissue. So my R breast is bigger than my L one (had a bilat mast). Did you get sore when they inject the saline? I always did. I did not have to have any saline removed. So far I've had 14 rads and haven't had any issues with "shrinkage." My skin has been pretty good so far too, just a little tender. I have not had any problems with lymphedema.
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Mel, you sound as if you started around Sept 1 too? Today was my 14th treatment, and I'm running a little experiment. Yesterday I did the treatment, came home lathered it up with lotion then went out and mowed the lawn. It's 1.3 acres, so time consuming, and it's still in the 80's. When I finished, the skin over the upper right side of that breast had a red bumpy rash...almost looked like sun poisoning--gone this morning. Today so far it is fine (2:45 after a 1 PM appt)...I'm going to see if it comes back later, and if not, I'm declaring myself a lawnmower free zone until the end of treatment. LOL
bubbalu, I hope you get an answer at your appt next week. That's a heck of a drive but if they know something that will help, it will be so worth it!. Let us know, OK? I was so hoping you could get through it this time. Did you get pictures of your reaction to bring with you? Is it still burned looking?
DMS, Jersey Boys was fantastic! What terrific music that was and oddly, I hadn't forgotten a word of those songs in all these years. There is nothing better for the spirit than getting totally away from this mess, and we did, playing tourist in our own town with a nice hotel that night, and fun breakfast in Southtown the next morning. Did us both a world of good! Yes to the celebration! We'll all throw virtual confetti when this is over!
sespebadger, it sounds as if you are almost done if you are getting mapped for boosts! How is your skin doing and has the big tiredness hit? I'm sure that last day will be a happy day!
Hope everyone is doing OK and welcome to everyone who joined in recently. I'm afraid to go back and look for names as I'm afraid I'd lose this post. breastcancer.org's website doesn't seem to be Firefox friendly, as I can't cut, paste, or copy anything. It's my luck to write something long then lose it if I move off this page!!
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gin2ca: Thanks for the tip, I will try the Mayo hotline. I'll have to find the number on their website. Thanks
BocaCiegaBabe: Yes, it's a long 5 hour drive but after the apt. we are heading for Stone Harbor on the Jersey shore for a couple days of R & R. Our home away from home. Boy do we need it.
Actually Phila wants all my records, films, scans, reports, rad mapping, chemo logs, everything from the last year brought with me and yes I have photos. We have to go into Pgh to Magee tomorrow and pickup what's there.
My neck is healed up now. My radonc told me today that he can't treat me with these issues and I told him what I'm intending to do. You can read it in an earlier post.
Wish me luck............I'll post when I know.
Did anyone here ever take Biotin? My hair is being sooooo slow. No reactions?
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gin2ca: Thanks for the tip, I will try the Mayo hotline. I'll have to find the number on their website. Thanks
BocaCiegaBabe: Yes, it's a long 5 hour drive but after the apt. we are heading for Stone Harbor on the Jersey shore for a couple days of R & R. Our home away from home. Boy do we need it.
Actually Phila wants all my records, films, scans, reports, rad mapping, chemo logs, everything from the last year brought with me and yes I have photos. We have to go into Pgh to Magee tomorrow and pickup what's there.
My neck is healed up now. My radonc told me today that he can't treat me with these issues and I told him what I'm intending to do. You can read it in an earlier post.
Wish me luck............I'll post when I know.
Did anyone here ever take Biotin? My hair is being sooooo slow. No reactions?
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Had treatment #21 of 33 today...but just realized that only 28 treatments will be to whole area and the final 5 will be to incision area only....Yay! This is good news because the two areas that are getting a bit painful are my lymphectomy scar under my arm and an area right in the middle of my chest about 2 inches down from my collar bones (sorry I don't have the real name for that!), and neither of them are in the boost area which is just my RMX incision straight across my chest at the level where my nipples used to be. The incision is not a problem area so far, I'm guessing because it never saw the sun ;-). I use aloe gel 3 -4 times a day and my docs keep asking if I need anything more for pain relief, but so far I don't.
I am not too tired yet. I am fortunate not to be employed now, but keep very busy driving to and attending my daughter's high school volleyball games (about 3 per week), doing lots of cooking and cleaning and of course driving back and forth to radiation!
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gin2ca: no luck on the website for the hotliine number!
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Bubbalu ~
Mayo Clinic 24 Hr. Nurse Hotline is 1-877-351-9900. Just found it online. Try it out, good luck!!!
Paula
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Bless you Dianmond Girl!
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Hey ladies! No time to write much now, but glad to see you back Janet and thinking about all the rest of you ladies!
Today is treatment # 10 out of 36 for me. I'll also be getting tatoos today. Hope they don't hurt too bad.
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I have been reading thru all of the threads here & I love that I can come to this and always get a boost of great energy! I have completed 9 of 30 rad treatments, had a minor infection but with 2 shots & antibiotics it looks like it is slowly going away, thankfully I only had to take a 2 day break from rads, I was very worried about that interfering with my treatments. Hope the next 4 weeks goes quickly as I am very tired, I get up at 5am to drive 35 miles for treatments then another 40miles to work and then 15 miles home.....ugh, lord pleaaaaaaaaase help me get thru this!
Also wanted to see if anyone else has experienced back pain after rads started? I have been getting low & mid back aches that come & go and of course the shooting pains in my breast which I know is normal in the healing process.
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nwshannon: I've been having some low back pains off and on since starting rads also. It's not that I never had them before, but it's been several times in these few weeks, so I've been wondering. Advil seems to be enough to take care of it. I have my weekly doctor visit after tomorrow's rads, so I'm going to ask about it. I'm wondering if it's just a reflection of my fatigue, like how sometimes I get a headache if I'm tired. Now that I think about it, I've been getting headaches more lately also. Since you're having to do so much driving, that's probably not helping either.
I hope our docs can tell us it's just a normal SE that will pass.
Karen
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jsmiley...I'm happy you're getting to be a tattooed lady too. They didn't hurt much at all--just a little pin prick for each, then you are done...hope yours are the same. That should make things easier for you--I don't know how they'd line me up every day if it weren't for them. I was talking with a gal today that just has drawings on her, and each day they re-do them. I'd have ruined all my clothes by this time!!
Me too! Glad janet is back.
nwshannon, I'm SO glad the infection issue has cleared up and you are back on track to getting this over and done with! Poor you with those awful drives!! 90 miles a day would make anyone beyond tired! No back pains here, by the way.
Stone Harbor is JUST what the doctor ordered, bubbalu. Enjoy your R&R! I miss the water So much (moved here from FL).
15 down now, 18 to go. Yay, almost half way!
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Hi Ladies, just finished treatment number 13 today....now I'm finding that I have a very sore nipple....is anyone else having this issue? Boca I think you're getting rads in the same fashion as me? 2 zaps from outside low and inside higher up? Rad Onc told me to use Polysporin...hope it helps
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shygal, no, I haven't had a problem with that. We are getting the same "shots", and certainly the nipple area is more exposed. I've found that I'm more comfortable bra-less, as it seems like the one area that is reacting (just above my breast) feels better with nothing possibly rubbing it, and being a B/A cup, I can pull that off for the most part. To tell the truth, when I get home from my appt, I reapply the lotion they gave me, put some Aquaphor on the area I mentioned, and just go topless for the rest of the afternoon. No one is around, so that works and is very comfortable!
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Well the tatoos didn't hurt too bad. I could only feel 3 out of 6 as I am numb in 3 of the spots. Well got 11 of 36 done today! Hey is anybody feeling tired - like physically? My legs feel kind of weak also. Ugh! I had horrible fatigue with the chemo and was so hoping I wouldn't get radiation fatigue. Does anybody else have it and if so what is your experience like?
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Hi! jsmiley60,
Today I had 9th radiation treatment, and continue to take a nap when return home. I am still getting stronger with end of chemo going on 6 weeks. Today I met a radiation patient who has rare mastoid bone cancer. Breast radiation treatment is a walk in the park compared to mastoid bone radiation treatment. Side effects include sores in mouth, sore throat, and anything that could be ear or general head misery. I so hate mouth, throat, and ear pain.
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