AUGUST 2009 RADS
Comments
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I had tx 9 of 25 today- the treatments themselves are getting easier to endure- I'm having the IMRT which takes longer cause I get a CT scan each time and then the treatment time itself is about 14 minutes. But I actually fell asleep briefly during treatment yesterday!
I'm already feeling really tired. I called into work yesterday. the whole process is just wearing on me- this cancer stuff got old a really really long time ago. I am going to try to rest up this weekend, but if I still feel this tired I will probably see if I can take a half month of disability for the rest of the treatments.
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Wow - lots of newbies in this thread! Welcome!
I start my first rad treatment tomorrow. This one will probably take longer as they will make sure the tattoos are in the right place. After tomorrow only 29 to go
I am reading all of this information regarding the special creams everyone is using. The only thing I bought was 100% aloe gel and was hoping to get by just using that. I guess I will know pretty quickly if I need to get some other special cream.
My oncologist called today. He has never called me in the past. My response was "Oh....ok" in a very scared voice. I was pretty sure he was going to tell me something bad. He responded "I usually don't get that response when I call people" Me "I figure if my oncologist calls or the horse barn manager calls, then it is never good news"
My oncologist laughed and said he was calling me to tell me that my BRAC testing came out negative and so that was good news. That was nice for him to call, he could have had an assistant call me instead.
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Welcome to the new ladies.
Yesterday the machine was down again. They called me while I was in the car on my way to the appt. Actually, I was sort of relived. I had been feeling pretty nauseous all day, and was glad to just turn the car around and go back home.
Kristen: I am right there with you on the breakdown. Last week, I ran into my daughter's 4th grade teacher from 3 years ago. I bumped into her at the grocery store. She asked how I was doing, and I did the same thing. I started to say fine, and then before I knew it the tears started. Right in the middle of the store, and with someone I hadn't seen or talked with in years. Keeping you in my thoughts & prayers.
Hugs to everyone.
Charmaine
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Yesterday I finally had my simulation and will have another on Aug. 21, then start for real on Aug. 24. I am getting a total of 33 treatments, 26 + 7. I believe I am getting the 3-D Conformal kind. The simulation took about an hour, but that included a 10 minute discussion about the merits of tatoos vs. Sharpie markers. Condensed version: Tatoos are better and I don't want any. I have green Sharpie lines and circles all over my chest now. The lines do seem to smudge some in just one days time, so I'll have to be careful. (If only they used the "niteclub ink" from my youth...Those handstamps could last for days.) Will have to see how the Sharpies hold up when it comes time to start slathering on the creams.
I don't feel at peace with my choice to do the radiation, just too scared not to do it. The plus side is the cancer center is 10 minutes from my house and everyone at my Rad-Onc office is very nice. I was up there earlier this summer when my mom had radiation for lung cancer. It's kind of ironic that I am now back as a patient a few short weeks later. Fun summer!
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Hi all hope everyone is doing well--another week down for many of you and another week closer to starting for many of us(I will start Aug 31) simulation and Ct scan next monday--then having my port taken out a week later then the rads--
ELimar--I feel the same way you do about the radiation--not quite at peace but too scared not to--hope all goes well --what is the 3-kD conformal kind?? is that the tomography -- I didnt go to a second place for a second opinion on types and know there are a couple of options IMRT and regular and tomography--my rad onc said I didnt need the IMRT although to me it is more localized I still have the option of doing nodes or just the breast but since I had 2 positive nodes with lymphatic invasion and a small tumor I guess i will go with the whole thing--again too scared not to --I also did double mastecomy
Well good luck to everyone for the up coming week and have a great weekend off!! Enjoy!!
Laura
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Hi everyone. I haven't posted in awhile. Just had #9 of 33 and so far so good. No redness to speak of. I've been using Curel cream for now - drr. said I could put any type of lotion I wanted so long as I did it more than 6 hours before treatment. I have treatments in the a.m., so I put some on right after treatment and some just before bed.
I'm very tired, but I don't know if that's the radiation or everything else in my life - car broke down Sunday, Air conditioner has been out all week (during a wave of 100+ highs) and kids are crazy with the last 2 weeks of summer vacation. I've been having to take my younger one with me this week and they've been very nice about it. Well, everyone but the mean receptionist. I heard her complaining to the nurse that I had him there, so the next day the nurse caught me on my way in and said she was so sorry that they were no trouble and if I wanted they could come sit in a chair by her workstation while I was in the treatment room.
Ed. to add that I am having some issues with my markings wearing off. I'm a little frustrated b/c they tattooed the dots so I wouldn't have to worry about it (we go out to the lake alot in the summer), but now also hhave to have a big X across my aerola which isn't tattooed, so I still have to worry about it. Any tips on keeping it "fresh"? I swear it rubs off every day.
Right now I'm at an inflatable playland while the kids play so I can just sit for awhile. Good to hear most everyone is doing well. It may be another week before I find time to check in here.
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# 12 of 33 done! Love that it is Friday! I also am getting more tired after tx. Also have developed some "stabbing" pain (sometimes) in radiated breast mainly along incision that unfortunately I am told is normal! Enjoy the Week-end!
Be Well All!
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Dayla- I just went back through this thread and thought I had responded to your mohawk pics....but I didn't. Wow...I guess I had a chemo moment. You looked awesome! I think you pulled it off way better than I did.
Sorry to hear you are experiencing such fatigue. Sounds like others are experiencing it too...
Just got back from my onc appointment. He gave me a choice to start Tamoxifen right now or wait until I finish with rads. I'm leaning toward starting it right away. What have others done?
For those of you that had a lumpectomy...are you wearing bras through rads?
Thanks for any input.
Have a great weekend.
Betsy
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Betsy - So far I am able to wear a bra, sometimes though I switch to a light-weight sports bra and it is so comfortble! Right now we are experience good summer weather, so i prefer to stay with a normal bra as it is airier!! LOL I know that I may get rash and itchiness, but so far so good - just a little pink and some pimple looking dots. When (IF!) the rash starts, i will be switching to the sports bra as it is softer on the skin! Be Well.
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Hi everyone,
I'm joining you from the May chemo starters (many of us are starting rads now--others are still with the chemo...). Glad to see this thread! Thanks to Alyad for starting it.
I just finished #3 of 32 (23 whole breast, 9 boost). I had lumpectomy 4/3 then 4 rounds of T/C (my oncotype was 22 so they recommended chemo) -- finished chemo 7/20. So happy to be on the other side of the chemo that I'm a bit in denial of the radiation! I LOVE the mohawk pictures-- you guys look amazing!
Betsy, I was given a prescription for 2 bras and a camisole (which looks to me like a super soft sports bra)-- they had said no bra was preferable, but I teach so I said I could not that! I was pretty happy about free bras.
So far the radiation has been quick-- in and out in 15 minutes or so. I use aquaphor at night (yucky and greasy but it was what they preferred) and 100% aloe in the morning as it is not greasy and it dries evenly. I actually put it on my lovely peach fuzz as I read somewhere that aloe stimulates hair growth... I can only hope.
Hugs and happy weekend to everyone
Helen
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Helen,
Where did you get the bras?? I am assuming a specialty store since you had a prescription. I find my regular bra too rough (even for my incision) and my sports bras are tighter. Was wondering what kind of bras they are selling for people with lumpectomies going through rads.
My rad onc also only give aquaphor. I get rads in the AM. I use the aquaphor at night, but not sure when to use it the next day...not before treatment and not sure how long to wait after before putting it on. I think I will try the aloe so it is not so greasy.
Take care,
Chris
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Alyad, I was told after I posted Is anyone familiar with this treatment which I was questioning IMRT and radiofrequency ablation, that you are the person I needed to talk to. I quit my Abraxane/ Avastin treatments last month, after 22 because of SEs......the neuropathy starting in my hands was what really made my decision for me. My onco said we could take a break, but that I need to be on some form or chemo since the cancer is not going to go away and will only get larger. I only heard about these other methods of treatment ( have had rads to my sacrum the conventional way) last week when I heard a radiology/ onco speak. I am going to ask my onco if I would be a candidate for this treatment when I see him Wed. and get my faslodex and zometa. I have good ins (retired fed employee through my husband) but when you said you get a Cat scan every treatment, think they might balk at paying for that. Also, it seems like whenever I take info or articles on treatments to my onco he always says it wouldn't work for me and I do think he knows what he is doing since I have been Stage lV since 98 with bone, lung and liver involved. However, I would love to try just about anything other than more chemo. Hope you or someone else on here who has actually done this treatment can give me some personal accounts on just how it works, feels, etc. I did not get tired with the conventional rads and did them on my lunch hour.....also kept working full time on the Abraxane, but know this other method takes much more time and is more intense.. I wish you all the very best success with your treatments.
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any one out there have a mastecomy with 20 to 30 nodes removed and had rads--is your arm ok--any lympedema yet--scared that I will get it because of the amount of nodes I had removed--the possibility is on the high side--only had 2 positive but they feel it should be done to axilla since I had lymphatic invasion--just wondering if anyone else affected--Thanks Laura
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Laura: I had a lumpectomy with full dissection. I had a positve node prior to surgery so did chemo first. On the table the snb came back negative, but doc's gut feeling was to do full dissection...I had lymphatic invasion as well. Path. came back with micromets in 2 nodes, but that was AFTER chemo. I am doing 35 rads now (2 down). I see the PT on Thurs. I still have what feels like a softball under my arm. Everyone kept saying it was swelling and would go away. PT thinks it is the start of LE. I'll keep you up to date with what she says on Thurs.
Chris
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Marybe- I sent you a PM. I've been out of town all weekend and hadn't seen your post here yet. I had a case manager (hired by my insurance compnay to manage costs- but also supposed to advocate for me). When I told her they wanted me to do IMRT, she said- "I was afraid of that". She said it costs twice as much cause they have to pay for the machine! I'm not really sure what it costs- I hit my yearly out of pocket a long time ago. But the case manager also said the IMRT was justified in my case. Some places/companies might give you more trouble. It can't hurt to ask your onc if it would be right for you.
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Greetings ladies...I have been a bit AWOL again!
anxiousmama: I cannot believe that receptionist is still giving you problems...whatever is her problem?
chrisC: Someone told me about some front closing bras at a plus size store called Catherines. You do not have to be plus size...they had all sizes. Brand: Serenada 90 percent poly/10% spandex No underwire, kind of silky soft. They fit rather like a sports bra but I love the front clasps. I got a size larger than I would normally wear. Seems more comfortable that way with the swollen breast and axillary dissection.
Friday was #6 of 33. I was pink at #2. Rad therapists said no way was that radiation. It wasn't. Lucky me has an inflammation in the lumpectomy cavity. I'm now on Keflex for 10 days. But it doesn't stop the rad treatments! I am very lucky. My rad people could not be nicer!
Hugs to all, Sue
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I am small breasted and have not worn a bra for many years so this is not a problem for me. I latter up twice a day with Biafin Topical Emulsion (prescribed by rad onc) and then wear a soft camesole. I just finished my 4th treatment and so far so good. I have seen that Walmart has low cost front closer sports bras up to a size 40 for less than $10.
Funny true story: Once worked in an office with a disagreeable co-worker to everyone. One day someone during the lunch break put a large box of X-lax on her desk with four words. "Hopes this helps you" signed the company name. Creative huh? Good luck
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Hello again everybody -
I had #10 of 38 on Friday. Now I've got "ink" marks with tape on top, not tatoos - which I prefer - except I've had a tough time keeping them on over the weekend. Anyone else experience this?
No serious problems yet, although now I can tell there's stuff going on. I'm getting a slight "tan" in the rad area. I've also had some tenderness on and off for a couple days - but it might have something to do with PMS, as I frequently get tender around this time - or a combination.
Anyway, all my best to each of you who are also on this journey. This road will come to an end - eventually.
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Sue: I went to Walmart and got a front closing 'sports' bra. I got it in a size 40, usually wear a 34-36! It feels good. I also got a few camisoles that have the built in bra. They are even more comfortable. My breast is very tender...feels like a slight sunburn already..only 2 treatments. It felt that way since my surgery.
My rad onc, surgeon, and onc doc all looked at the swelling under my armpit and said it was swelling and would go down. The PT said it should have gone away by now and is probably LE starting. She said she would work it out...advised pain meds before visit!!
I am scheduled for 7:15 am all week....so off to bed!
Chris
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Chris: That swelling is soooo annoying. Mine finally did go down about week 5 after surgery. I have wonderful co-workers. One guy said that he knew I was feeling better because I did not have my "chicken wing" sticking out. (Guys... you gotta love them!) So, we should think of each other in the mornings...my treatments are at 7:24 am EVERY SINGLE DAY EXCEPT WEEKENDS AND HOLIDAYS!
I'll check out those bras at Walmart!
Hugs, Sue
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Sue: Did you do anything special to reduce the swelling? I love the chicken wing comment...that is what it is like. I can't stand my arm down because the skin rubs together or I feel like a softball is stuck in there!! I hate the 7:15 time. I am off for the summer and getting up that early is not going over well, but I figured it would be out of the way and give me an excuse to get my butt out of bed! I stop at Planet Fitness after for about an hour. If I didn't schedule it this way...nothing would get done! I will schedule them for 4:00 once school starts.
Set that alarm...goodnight,
Chris
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Suggest that they mark you with paint pens. The are available at craft stores. The thicker tip works the best, and the blue lasts the longest.
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There are really no reliable products to prevent the skin reaction. If you are able to see skin marks while you have your dress on, the skin reaction will be visible. If you have tattoes, ask the therapists to use a sharpie pen to mark the area being treated. It might be wise to get a dress that covers the area so you aren't self-concious for the wedding photos.
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I have green Sharpie marks instead of tattoos, and they gave me the pen to keep them inked up over the weekends. Oh, they wanted me to get tattoos, and laid it on real thick that I can't let the marking rub off otherwise they would spank me or something. It's no big deal to draw the markings on about once a day to keep them fresh. (God, give me a steady hand!) I wanted so much to "just say no" to the radiation entirely, but out of fear I am going to get 33 tx. It just FEELS GOOD to say no to one tiny little part (the tats) at least. I'm funny that way. Hee hee (maniacial laughter!)
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Well had my marks put on today too--ct scan and all--have to go back on friday for the tattoos--hope they are tiny like they said ti would be--pretty marked up with ink today--i am still confused as to how many treatments --one doc said 6 weeks with 3 boosts another said 5 weeks--the 5 weeks is at a higher dose daily and the 6 weeks is at a lower dose daily with 3 boosts she suggested the 6 weeks if ihad the time it might be a little better in the long run-- but she gave me numbers that now are not adding up right--i am so confused --I thought i got it while i was there but now it doesnt add up to what she said--and looks like i will be getting more radiation than she said--i have had so many questions that if i need more clarification i think they will think I am nuts but I have to get this straight--i am so scared of the whole damn thing and it is now sinking in i hope i am doing the right thing--will need to clarify this whole thing when i go in on firiday--sorry for going on and on--hope everyone is ok out there--Laura
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I am going in for my simulation tomorrow and I really don't want the tattoos. I am going to ask if I can just get marked with the pen instead.
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The Sharpie marks DO rub off on your bra. Wear a black bra -- hides the marker color. When the times comes that the bra gets irritating, I'll go to dark t-shirts. I did get a white cami to wear later.and that's going to get sacrificed to the green Sharpie, oh well.
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Underwent my planning session yesterday and i have a question. The techs said no eye protection is necessary during whole breast radiation. (Not having mammosite) Is this true?
My breast is so near to my face as i recline, i cannot help but question the safety for my eyes.
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Had my first radiation treatment today. Dr. moved the margins a bit so I have to go tomorrow for another line-up and treatment. I got more tatoos today. I don't find them that bad--just the size of a freckle and I won't be wearing a bikini anymore in this lifetime so they really don't bother me. Had a lumpectomy 6/25; stage 0 clear margins. The surgeon said I didn't need radiation but the oncologist recommended to prevent (so to speak) cancer from reoccurring. I had reservations about getting it but felt if I didn't I wouldn't have done everything I could have. Now, after reading the side affects I'm wondering if I made they right decision. Very scary stuff. Not looking forward to any of it. Peace to all.~
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CAPHAN: Ask your surgeon and or rad onc if you are a candidate for the shortened 3 week radiation treatment plan. I choose this plan as I am a candidate. Small breasts, clear margins, small tumor, and lymph nodes negative. Talk to them about this plan, it might be a good one for you. I was told that re occurance percent after surgery was 30% and after radiation down to 5%.
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