Winter 2013-2014 Rads

LanaM,  I have terrible itching.  The hydrocortisone cream helps a bit but am also needing to take benedryl capsules and that at least helps me get through the night. They make me too sleepy to take during the day though.

Lesliecusana, I also have olive complexion and have been red since day one. I only have 3 more treatments and am now dark red, bumpy and itchy.  RO has never been concerned with redness and said the only concern that would change treatment would be broken skin and thankfully haven't experienced that. Take everything the rad techs say with a grain of salt.  They aren't doctors, just trained to use radiation machines. 

Thanks for this forum!  I am just finishing my first week of radiation, started Monday Jan 6th.  4 1/2 weeks to go- 28 rads total.  So far so good, of course.  I am very anxious abut potential and probable burning and can use all the advice I can get.  I started creaming the area right away using my oncologist's list of recommended products.  Would love to hear what those of you ahead of me are doing and how it is going for you!

Everyone using creams just remember water base creams are better than greasy formulas (cause most people know you don't put butter on a burn). No alcohol cause it drys up skin. Fragrance free cause some fragrances can irritate. I've heard that using the actual aloe Vera leaf is good to use ( don't use if already allergic) and its natural

Haven't posted in awhile because I was trying to forget that I was going to have to do radiation.  I am dreading it more than I did the chemo or even my BMX.  I have had my simulation and a practice run yesterday where I had to have my arms up for 45 min.  I was in misery.  In addition they made a bolus ( not sure about spelling) but basically this is a mold they put over your breast ( in my case my fake breast) to trick the machine that it hits your skin earlier than it does so that the beam is at 100% power when it hits your skin.  My RO explained I had to have this done because the cancer was so close to the skin that they saved.  Well when they were fitting the mold there was a lot of prodding at my breast and armpit which was extremely painful.  The techs and doc tried to be as gentle as possible but they had to do their job.  By the end I was in tears.  I was a reck yesterday.  Getting on the website today has helped.  I start my treatments on Monday 1/13.  

Very worried about burning, destroying my skin, and losing my TEs.  Already started using miaderm and thinking about getting Emu oil too.  Oh and also plan on moving my desk at work temporarily to a lab in our building that is at 90% humidity!  It's like a sauna in there and should keep my skin hydrated at least while at work.   I am also taking vitamin D and drinking lots of water.  Need to drink more though.  

Jfl...although I am worried about radiation and all it's SEs, I am more worried about recurrence.  I can't imagine not doing rads because I had 4 nodes positive.  I am only 43 and have two young kids to think about that want me to be around for awhile.  I am getting rads on the left but am doing gated breathing so the heart moves out of the way during treatment.  I also had AC chemo and am currently on Herceptin....both of which can impact the heart.  I do get Muga scans every 3 mo to check my heart and feel they are watching it carefully.  It is all about risk and statistics.  If the doctors felt radiation was more risky to cause other problems than the risk of recurrence then they wouldn't have it in the protocol.   It is good to ask questions though because all of us are different.  Bring your concerns to your doctor and challenge them.  I did that last summer when they wanted me to take Aranesp for my low hemoglobin.  In the end I ended up taking 1 dose of the drug which got me through my chemo but refused subsequent doses when my hemoglobin got above 10.  Good luck with whatever decision you make.  

Jfl- There are so many decisions and dilemmas when beginning this journey.  Every one is a personal decision and I certainly respect yours re radiation, whatever you finally decide to do.  My first decision was a double mastectomy or not and I made that one easily before my surgeon even recommended a double.  My left side was totally clear, but I had no intention of worrying about it for the rest of my life.   I am in my early 70s and didn't want any reconstruction, so that too was an easy one.  One surgery was enough for me.  My right side was Stage IIB, nodes removed showed only 1/10, the sentinel node, with cancer cells.  I also was HER2 positive, so am doing Herceptin for a year.

Was deciding to have radiation 'overkill'?  I guess I'll never know, but was afraid to take the chance of not doing it.  I have just finished my first week, so can't speak to side effects yet, but 5 1/2 weeks of radiation can't be worse than 3 1/2 months of chemo.  One of my sons is a doctor, so I am lucky to have not only his opinion in addition to my doctors where I live, but that of the oncologist in his practice also who has seen all my tests and records.  All advised I do the complete double mastectomy, taxotere/carboplatin, Herceptin, and radiation plan.  Again, a very personal decision for all of us, but I felt if I trusted my doctors, and especially my son, I would go with their advice.  The radiation to me is like supplementary insurance and I wouldn't want to regret not doing something that might prevent trouble down the road.   .

I met one woman while being fitted for bras after my surgery who scoffed at me for doing chemo much less radiation.  She had chosen to go total homeopathic with only surgery, no chemo/no radiation.  The interesting thing was how defensive and abrasive she was to me.  I in no way judged her decision, asked her to explain her treatment so I could learn more about it, etc., and couldn't have been more pleasant and encouraging to her.  She virtually attacked me verbally that most people thought she was crazy blah, blah, blah, but she knew none of the chemo/radiation would do anything to get rid of her cancer but vitamins would.  I got the feeling she made a decision she was afraid she might regret and had to defend herself to herself, certainly not to me as she was doing. 

Wonderful days ahead to you no matter what you decide to do.

Just finished treatment #7 out of total 25. I'm starting to have some
swelling/soreness. My nipple is especially very sore and swollen. I
started wearing undershirts instead of a bra! The only thing that makes
this all bearable are the very nice people in the radiation department
where I'm going. They all try to make the experience as pleasant as
possible.

Holeinone, I also didn't have a mold made. Last time I was there I asked them how they know I'm in the correct position every time. They showed me the lasers that come out of the walls, one on the right and one on the left, that they line up with the tattoos they put on each side of my body near my ribcage. I was wondering why I had tattoos down there!

Bondsy, thanks for explanation, my place has those lasers, and it is all fairly new. As much as the disease, treatment, expense, losing all we have lost...really sucks, the technology of the treatment is certainly interesting. Wished I could of just watched it all on a cute You-tube video though...

Sally:  thanks for your question and for everyone's answers.  My MO took me off Vit E and Omega 3 fish oil, but said OK to stay on Centrum Silver, Citracal, Vit D, Vit B-6 and Vit B-12 for the entire chemo journey.  Hope you feel more peaceful after your Mexican dinner.  Maybe a Margarita?

Margarita? Man that sounds good. I'm not a drinker but that sounds really good. Are we allowed to drink?

No margarita but the grilled chicken with avocado and fresh salsa was delicious.  Of course, I had to sample the chips.  Thanks for all your info from your docs.

Hi, all.  I'm in a similar position to JackieAK, meaning I'm in the chemo phase right now and rad decisions are down the road.  But I'm not clear on how strongly rads would benefit me over and above the BMX, aggressive chemo, and hormone treatment.  Can anyone help with that?  

My 11 positive nodes were discovered after the BMX so I was not able to take that into consideration when making surgery and recon decisions.  My tumor was small, and that degree of lymph node involvement was unexpected.  The MO thinks maybe I just got unlucky with tumor location and it grew close to a vessel.  

The downsides as I see them are the immediate SE's from the treatment, the continued disruption for another 6-7 weeks after 20 weeks of chemo, a delay of 3, 6, maybe 12 months in addition to those 6-7 weeks before being able to exchange the TE's for implants, and much higher complication rate for the implant reconstruction, plus cardiotoxicity risk (in the case of chest wall rad) on top of what I'm already incurring from the Adriamycin, lymphedema risk (in the case of ax nodes rad) in addition to what already exists from my ALND, and possibly the risk of radiation generating new primaries being increased because I'm BRCA positive.  This combination is creating a lot of distress for me in anticipation.  

Are rads truly likely to decrease distant recurrence risk over and above my chemo and hormone treatment?  It's hard for me to see this benefit.  I'm not HER2+ or ER- and the Grade 3 cells are supposed to be particularly responsive to the chemo.  The dirty lymph nodes are out and the CT didn't show any reason to believe there was additional node involvement currently.  Why wouldn't chemo clean up any micromets in the remaining nodes?  

II'm actually willing to live with a certain amount of locoregional recurrence risk, since that should be greatly reduced by the BMX and fairly straightforward to treat, especially if I haven't already played my radiation card.  Already I have to live with a 15% distant recurrence risk even with the chemo and hormone blockers.  If there won't be a big decrease in distant recurrence risk, right now rads feels like overkill to me.  

I realize folks on the forums are not physicians and I need to have a heart-to-heart with an RO, but I would appreciate any insights you can share, articles or other research, etc. based on your experiences to date.  Thanks in advance!  

I got my warrior princess toes on and I'm ready for battle - bring on that lumpectomy and the IORT!