PacNW or anyone else close to starting rads in 2013?

CarolynVM

What is a bollus?  I looked it up and none of the definitions seem to fit with radiation setup. 

SwgeeWi

Pacools, I bought some Amoena "Frances" style bras. They are 95% cotton , front close, and they have pockets for forms (which I don't happen to need). I bought them through my hospital's Carewear store and they billed my insurance directly. I think they were $34.00. I probably wouldn't have paid that much if it hadn't been covered. They are very comfortable. I just wish I'd bought three instead of two . I sleep in one and use the others for daytime when I'm not quite as lubed up. I'm a DD cup and didn't really think cotton would be supportive enough, but I really like these!

Robin_Brooke

Carolyn, I think I'm spelling it wrong and I looked for it too, but I know that's what they call it. Looks like a mesh rectangle that covers the area to be treated so it gets super radiated. It was explained to me as to how it works, but when I go back Tuesday I will try to remember to ask about the spelling.

My RO did tell me yesterday to be sure and use the aloe behind my shoulder as far as I could reach because there will likely be exit burns eventually from the clavicle area being radiated...passes right through. Lovely stuff!

pacools

SwgeeWi thank you I will look online for these but will inquire at university of Michigan first good to know insurance might cover it. Also I think I will take you advice on 3.

dbm75

I also am a 2013 radiation person, so thought I'd join in on this forum. Had my lumpectomy and snb on 1/15, then took a few weeks to meet with two RO's and two MO's for 2nd opinions on what type of treatment they'd recommend. Wanted to make sure I made the right decision on the chemo or no chemo question, and got definitive "no's" from both MO's (also got "no's" from my two RO's and my breast surgeon, tho they were quick to say it is the MO who should have the final say and whose opinion should carry the most weight because that is an MO's area of expertise). So on to rads I move with much more confidence in my decision to skip chemo. Had my consult last week with my RO, and my planning session tomorrow (Tuesday 2/19). I guess that's when I'll get all the prelims taken care of, then it'll be about a week or so, and I'll get a "dress rehearsal" to be sure all is as it should be, then I'm good to go. So I'm guessing I'll be starting the first of 33 (which includes boosts at the end) the first week of March. I've been told to expect it not to be too bad in the beginning, that it's cumulative, and will see more SE's as time goes on. This forum and the others on radiation have been very helpful in giving us newbies an idea of what to expect. My RO, thank God, is only a few minutes from my house, work, and across the street from my kids' high school, so I'm very thankful for that, given how much I'll be there over the next 6 1/2 weeks! That is the reason I chose this RO over the other....all things being equal with both....the other was a much further distance. Other than the distance factor, I liked them both a lot. Now I'm hoping I can get a decent time slot for my daily visit, since I plan on working through these as long as I can. I've been told that can vary, depending on how fatigued, etc., you feel towards the end. Since I work in a school, I'm hoping to be able to do this after school each day, but that'll probably be a long shot since I'm guessing all the later-in-the-day slots are the first to be filled. But we'll see. I'll have to keep reading up on this to see how things are going for everyone else and to get tips on bras, creams, etc. My RO suggested the Aahh Bra, or something like that (may have the spelling wrong), which is available at Walmart, and not even as pricey as my own regular bras, which I can no longer wear once I start rads since they are underwires, which are no-no's. So I look forward to keeping up with you all as we start this radiation journey together!

shianne29

I guess each dr and person is different. My RO told me no bra as much as possible, I'm only a A-B anyway so no big deal for me. Also he told me " Lubriderm sensitive, lanoline free" or "Glaxol Base" creams. I've been lubing up for the last week with "Impruv" 5-6 times a day hoping to have the softest tissue possible going in. I've also been using "Bio-Oil" since my stitches healed to help heal the scar. I'm worried about the recon holding up well. My BS and PS were adamant not to do immediate recon until my post chemo MRI came back NED. BS said no rads would be needed and went ahead with diep. Well, my path report came back with. 7x7.5 cm tumour with focal margins :-( so now I need 25 rads. I start on February 26 which will only be 6 weeks post op. my breast tissue hasn't completely settled yet and I'm afraid the rads won't help that any, that my breast will remain as firm and high as it is. Anyone have any experience with this?

Robin_Brooke

Sorry Shianne, that has to be feeling very stressful. Hopefully they will be good at monitoring your skin but it sounds like you're doing everything you can to prepare.

I asked my rad team about the bolus again. In regular medicine a bolus is a delivery system for medicine. What the term means at SCCA is a little different. She told me that radiation likes to penetrate to a certain depth, by laying the bolus over me it "tricks" the radiation into staying more surface. So it's laid on me during my first two zaps and then taken off when they do my collar bone area. As an example, if radiation would normally penetrate two inches with the bolus it penetrates 1/3 of that distance.

CarolynVM

Thanks, Robin.  I couldn't imagine what bolus meant!  Now I know.  Either my RO does't use them or I don't need them. 

Robin_Brooke

I think it may be specific to SCCA and using the Calypso system they pioneered. They also use GPS sensors on my chest during the treatment to monitor my breath hold.

new2bc

shianne29,

I have a question. I had BMX 5 weeks ago. I still have some of sticky remains of glue and mesh close to my stitches. How were you able to clean this mess? Do you put anything on the stitches? I am going through radiation and was wondering if you put anything directly on the cuts. Thank you for your help.

CarolynVM

I didn't have sticky stuff from my lumpectomy but I have had it from other incidents in my life.  Petroleum jelly is good for removing adhesive residue.  Skin lotion can work too.  Nobody talked to you about caring for your incision during radiation?  I thought the incision was supposed to be healed before radiation began but I don't really know.

new2bc

CarolynVM,

Thanks for your response. I have already finished one week of radiation. My BMX was on jan 15. My RO examined me before I started the radiation and did not mention that I need to wait longer. I am just worried by the end of radiation, my scars will be worse because of radiation. I will try to get more sticky stuff off the scars this weekend with vaseline. What are you using to protect your skin from radiation?

Anyone knows of a good scar lotion?

CarolynVM

I'm currently using a BOGO aloe vera lotion from CVS.  My RO said she worked at Johns Hopkins for many years before coming to Titusville to head the RO department at Space Coast Cancer Center.  She said sales reps were constantly trying to get them to recommend their products so they left boatloads of samples.  She said Johns Hopkins set up small tests to see if one lotion/gel/cream worked better than another.  She said they never discovered a constant variation.  She said the inexpensive Walmart lotions had just as much success as the $100 a jar creams.  She said start cheap and if it doesn't work, try something else.  Get something alcohol-free without fragrance.  She said any form of aloe -- including fresh-squeezed from a leaf -- is best in her opinion but don't feel limited.  Experiment and use what works.  I was reading about side-effects of radiation on the NIH website and read that only 1/3 of women get significant skin damage from breast radiation.  That's not to say there won't be some soreness or skin discoloration but it is apt to be quite tolerable.  If you're one of the unlucky third, work with your RO.  I've had treatment 14 out of 33 and I've got a sense of tightness in the skin and my breast is swollen and feels hard.  None of it is even 1/4 as bad as the time I sprained my ankle and not even 1/10th as bad as the time I broke my little toe and then went to a wedding in high heels.  We've gotten through lots of annoyances in our lives and we have a good chance of not having much more than an annoyance from the rads.  I AM tired a lot, though that could just as likely be emotional as physical.  I had lots of emotional "reactions" at first.  "My skin is burning!"  (Uh, no it wasn't.)  "My rib hurts."  (Of course it hurts.  I didn't use the footstool to reach the top shelf.)  I scrutinized everything that happened trying to match it up with some side effect or another.  Where there's a will there's a way and I did just great.  I finally realized I'm most likely one of the lucky 2/3 as are my real life friends who went through radiation.  If I do have a bad complication I haven't seen it yet so it won't be lasting more than three weeks.  I once had a colicky baby who allowed me four hours of sleep daily for three months.  I'll take three weeks of soreness over that any day!

CarolynVM

I'm currently using a BOGO aloe vera lotion from CVS.  My RO said she worked at Johns Hopkins for many years before coming to Titusville to head the RO department at Space Coast Cancer Center.  She said sales reps were constantly trying to get them to recommend their products so they left boatloads of samples.  She said Johns Hopkins set up small tests to see if one lotion/gel/cream worked better than another.  She said they never discovered a constant variation.  She said the inexpensive Walmart lotions had just as much success as the $100 a jar creams.  She said start cheap and if it doesn't work, try something else.  Get something alcohol-free without fragrance.  She said any form of aloe -- including fresh-squeezed from a leaf -- is best in her opinion but don't feel limited.  Experiment and use what works.  I was reading about side-effects of radiation on the NIH website and read that only 1/3 of women get significant skin damage from breast radiation.  That's not to say there won't be some soreness or skin discoloration but it is apt to be quite tolerable.  If you're one of the unlucky third, work with your RO.  I've had treatment 14 out of 33 and I've got a sense of tightness in the skin and my breast is swollen and feels hard.  None of it is even 1/4 as bad as the time I sprained my ankle and not even 1/10th as bad as the time I broke my little toe and then went to a wedding in high heels.  We've gotten through lots of annoyances in our lives and we have a good chance of not having much more than an annoyance from the rads.  I AM tired a lot, though that could just as likely be emotional as physical.  I had lots of emotional "reactions" at first.  "My skin is burning!"  (Uh, no it wasn't.)  "My rib hurts."  (Of course it hurts.  I didn't use the footstool to reach the top shelf.)  I scrutinized everything that happened trying to match it up with some side effect or another.  Where there's a will there's a way and I did just great.  I finally realized I'm most likely one of the lucky 2/3 as are my real life friends who went through radiation.  If I do have a bad complication I haven't seen it yet so it won't be lasting more than three weeks.  I once had a colicky baby who allowed me four hours of sleep daily for three months.  I'll take three weeks of soreness over that any day!

Annette47

Just wanted to agree with the aloe recommendation.   I'm through all of my regular (24/30) treatments, starting boosts on Monday.   I've been using a 98% aloe that I found in the organic section at Wegman's.   (My RO recommends anything 95-100% aloe).   My skin has barely even turned the tiniest bit pink and I've had zero problems.   Now part of that is just pure luck, but I do think the aloe helps quite a bit.   I put it on first thing in the morning, shower it off after my workout around 11:30, have treatment at 12:30 and put more on in the changing area afterwards.   Then again at bedtime.  My RO says that none of the creams, gels, etc will prevent damage; all they do is soothe it after it happens.   

Now I have had a lot of fatigue the last couple weeks, but nothing that has kept me from functioning - as I said to a friend "it's not so bad I can't function, but bad enough that I'm not enjoying functioning", LOL.    My RO says that one theory on fatigue is that the body is diverting a lot of energy to repair the damage to healthy tissue.   Perhaps mine is doing such a good job on that (hence the no skin problems) that it's sucking all the energy out!

Robin_Brooke

I was given 100% aloe by my RO and so far so good at 9/28 treatments. Can't beat free. Carolyn I had to laugh at the SE paranoia, I've had/got it too, lol. Sometimes I just need to breathe and relax and quit psyching myself out!

numbersinger

I start my radiation on Tuesday, Feb.26. The hard part now is not knowing what to expect. I just want this to be over as I have to be away from home for 5-6 weeks. How do they decide the

Length of radiation that is needed?

SusanHG123

Hi Ladies. I have a CT and bone scan Tuesday with plans to start radiation the first week in march. Finished all chemo except the 52 weeks of Herceptin 5 weeks ago. Started in July with a short break for a left mastectomy in December. Long rough road. My RO did not give me any cream to start using now. Just said to buy mens all cotton undershirts and wear them next to my skin with a bra over and use Toms deoderant. Will ask her Tuesday when I go for the CT and bone scan. Glad to find this group.

susan

Destina

andy7,

I'm also going to receive the 3 weeks accelerated rads. My rad onc said a lot of what you wrote, and I researched it as well, so I didn't see a reason not to go for the shorter treatment. I'll start within a week. I also talked with my rad onc about brachytherapy and she did offer it as an option. But, I felt less comfortable with that.

Sita505

Hi there. I am new to this forum. I started Rads 1/31, have 11 more to do. I am very small breasted w/ the cancer on my left side and worried about my heart and lungs. My Doc said when I asked about heart protection that I may have to do breath holds, but then did not say I needed them. I am sort of trying to do a little breath hold anyway, just because I have lost fullness in that breast and am so worried about my heart. I have had a low grade temp and nausea too. Additionally, I have had very low iron and had to have blood and iron transfusions possibly from a bowel resectioning this summer. It has been hard. I am single and some of my friends are I guess burned out from the summer. This is an informative board.

shahmad22

I will also be starting Rads next week Mar. 4th. I am also seeing a homeopathic doctor. She suggested using Calendula cream for any irritation and another cream if I get any blistering or oozing. She is also giving me 2 kinds of homeopathic remedies, one to take during radiation and the other to take if I experience any burning or blistering. My RO also recommened Calendula cream to be applied right after radiation and before bedtime as well. I was pleasantly surprised she recommened this as you don't often see traditional and alternative doctors agreeing on things. Anyways, we'll see how it goes. By the way, how do you get all the diagnostic lingo at the bottom? Is there anyone out there who is also using complimentary therapy? I am 49 yrs. old until next week when I hit the big 50. I was diagnosed in Sept. 2012, had lumpectomy in Nov. then re-excision in Dec. The tumour was about 1.3cm, ER+ PR+ HER2NEU- and Lymph Node Negative. My ONCOTYPE DX score was 10. My MO suggested hormone therapy: 2&1/2 years on Tamoxifen followed by 2&1/2 years on Arimidex. I have decided to wait until after radiation is done to start. I am afraid when I read the SE of Tamoxifen, but I will give it a try. My sister was also diagnosed at age 52 and she is on her third year of Arimidex. She seems to be ok, but there is some bone loss although it is stable for now. Does anyone have any suggestions or advice for me?

Sita505

Hi

Can you tell me what the homeopath recommended for skin breakdown? Both the cream and the remedy? I am using Calendula during the day and Aquafor at night. I have 11 sessions left, six full area and five targeted breast only. My skin is breaking down badly under my arm . I don't know what to do for the breakdown. I used wound dressing last night, but the challenge is keeping the dressing in place w/o irritating the underarm area. My clinic nurse gave me a net that stretched over my torso, but it slips under my arms. I just need to get thru the next six sessions and then the underarm area can start to heal.

I had a very hard time when I first started Rads, then I was told to visualize healing beams of light. That has helped me. Good luck with your Rads, you will get through it! Sita

carpe_diem

Shahmad22,

I've sampled some complementary therapies like acupuncture and massage and I do take some supplements (after checking with MO) like turmeric and omega-3 fish oil, but I feel the most useful additions to my treatment have been lifestyle changes in diet and exercise.  I've eliminated red meat, processed foods, and dairy and eat a mostly vegan diet with small amounts of wild-caught fish and organic poultry.  I walk and bike with my incredibly supportive DH and have exercise classes with other cancer survivors 3x a week provided free by my cancer center. 

About getting all that info at the bottom: Start by clicking "My Profile" at the top of the page and you will see four gray boxes (My Articles, My Diagnoses, My Treatment, Settings).  You can fill in the information in My Diagnoses and My Treatments and then go to Settings to complete your Profile and designate what information is public.  There is a signature line in Settings that let's you include a quote or more info.  "My Articles" lets you specify categories that you'd like articles about. Then if you click the box at below the "Post a Reply" box, everything you have designated as public will show up.

I hope this helps.

Robin_Brooke

Right now I'm at 12/28 rads and only using aloe vera 3x a day and getting pretty pink. I try not to wear any sort of bra and use a cami with shelf bra when needed. I'm a D so it's not the best arrangement but I don't like the rubbing against the skin where the rads are hitting. Does calendula help take some of the heat out? Whats the purpose behind it?

Sita, I am left side as well. Breath hold is especially helpful for us to pull the heart down and out of the way. If they didn't teach you how to do it ask. I take a super deep breath and hold it while the machine runs then let it out and repeat for the next one. It doesn't spare your heart completely but does lessen how much gets hit. I hope this helps.

Sita505

Thanks Robin. My Rad doc said that if necessary they would have me hold my breath when I asked about damage to my heart. Then he said nothing more about it. I am s little concerned that I am changing the position if the markings when I try to hold my breath? Any thoughts on that? I have 8 sessions to go and my skin is really breaking down. I started Silvedene for the broken skin and use Aquafor at night and Calendula during the day. I welcome any suggestions. Thanks, Sita

laurascott1016

I am starting rads on 3/4, a month after my last surgery. My RO looked at the surgical site and wasn't concerned, saying it looked good. My hospital network has a group of breast health navigators; telling me that the norm is 3-6 weeks after surgery to the start of radiation therapy. I thought I was more concerned about the decision to take or not take tamoxifen. My decision to start rads was kind of a no brainer for me. Though, I have read recently about "shrinkage", and not the kind that George got from being in the pool. After a month of looking at my smaller (post lumpectomy) breast,complete with large incision site, I thought, I can definitely get used to this. But if I'm going to be smaller yet, I may be rethinking future options for "evening the girls up". Anyone have info on this possible SE of rads? I am going to a treatment center five mins from my office, preparing to work through this 6-1/2 week process. I start Monday with 1 of 33. My RO said they'll give me what I will need to apply for comfort, so I am curious, after reading posts here, what that will be. I am approaching this part of treatment as I have approached my treatment since the day of my diagnosis. That is to not worry until there is something to worry about. I feel I am in good hands and one day at a time will get me through. Good luck and good thoughts to all in our winter 2013 rads group.

Robin_Brooke

Sita, I was told not to use anything with alcohol in it and as great as it is Aquaphor has alcohol. I was given 100% aloe gel to use and if things go south they will give me a steroid cream to use. I think the Aloe is by Nature's Garden brand but I'm sure there are others available. You should ask your rad techs about breath hold, mine do the markings during one before they start so they know when I am correctly matched up and they can start the beam. Mine is dose dense too though, maybe yours isn't and that's why they weren't as concerned?

Sita505

Thanks Robin. I am now using prescription Silvadene and it seems to be helping. I will ask the techs about breath holds. I am now really tight under my left arm and terrified about Lymphodena. I get an iron transfusion today; they still don't know why I am so seriously anemic. Having cancer impacted my denial mechanism. I never believed I would have cancer! Since I did I now am afraid of everything. I just want to be healthy again as I know we all do!

Sita

SwgeeWi

shahmad22, Congrats on turning 50!! Our stories are pretty similar. I was diagnosed 10 days before my 50th. Had my lumpectomy 11/29 and just finished 31 rads yesterday. I will start my Tamoxifen in two weeks and will switch to AI when they're certain I haven't had a period for one year. A friend of mine has been on Tamoxifen for two and a half years and has only had issues with hot flashes. I've heard great things about organic apple cider preventing hot flashes. (Bragg's vinegar) Ask your homeopathic about it. You can also look it up on the web. The claims for what apple cider vinegar can do are amazing. My mom always used aloe straight from the plant on minor burns we'd have as kids, and apple cider vinegar on sunburns to take away the pain.



i hope you have a grand celebration for your birthday!! My sister came to Wi from Ohio for mine and we saw Pat Benetar and Journey in Milwaukee on my birthday!! It was soooooo fun and greatly needed stress release for me. This whole experience has made me realize how much I take for granted in my life and to appreciate life and to live it more fully. My daughter just texted me from college and told me the Zac Brown Band will be in Wi in June. I told her it's a date! Good luck with rads and stay positive! Prayers to all of my BC sisters!