Winter rads 2014-2015

Wonderful postings, Birdgirl11 and perfectlyimperfect39! Very encouraging. Pita thanks for the tips. It is good to be warned that the last treatment does not end SEs.

Hi, Cavalier. I believe starting radiation 3-6 weeks after surgery is typical. I went 8 weeks because I had a vacation trip planned before dx, and everyone medical encouraged me to do the trip. They did all the Sim and tats stuff before I left and did the first zap the day after I came home. My insurance changed at one point and it took some extra phone calls with the hospital and doctors but was fairly easily dealt with. Because I delayed radiation a bit, I started Anastrozole before radiation to get something working. Good luck.

jlynn13,

I see that you started your radiation on 12/29...the 29th was my last treatment so I probably wasn't in the waiting room with you lol.

Our smilys are increasing!   I expect that the last of the November and early December starters will be adding them soon.  Hooray! 

 My personal update is that my armpit peeled. Weird.  I'm 2.5 weeks past final rads.  I still have difficulty sleeping on my rad side.  I wake up and readjust my position too frequently to get a decent night's sleep. My energy is surprisingly good anyway.  I think it was so far down, that any improvement is note worthy.  I've been working in my art studio for the last 3 days getting the dust and debris out so I can actually get to work.  I have some requests from my galleries now that they know that I am finished with my treatments.  It's really a nice feeling to get that kind of support.

The "hair" discussion is generally over in the "starting chemo" group, but I'll bet I'm not the only "baldy" here.  Mine is beginning to come home to mama.  I have a 1/4 inch, baby hair soft, and fuzzy white dome.  Give me another 1/2 inch and I'll be very "cool" with it.  Artists can get away with that sort of thing.  Especially "mature" artists who wear tie-dye.  It adds panache.   I'll just keep telling myself that. 

CoyoteNV,

What kind of art do you do? I do a lot of tole painting. I find it sooo relaxing & theraputic.

Hi ladies...today was number 18 of 28, just 10 left to go! The only side effect so far is that my left arm has really been hurting and it feels like there's a huge knot in my armpit. I'm guessing it's swelling from the radiation. Each treatment it's getting harder to hold my arm up for 15 minutes or so. But I can and will do it no matter how much it hurts!

Over the weekend I felt like I was developing a UTI so yesterday I asked to see the nurse after my rad treatment. She was at lunch so the tech left a message for her asking if she would call in a prescription for an antibiotic. The nurse called me and told me I'd have to call my primary dr. because "We are only treating your breast." I was completely blown away...I'm pretty sure the doctor as well as the nurse learned basic medicine in school. Do y'all think I'm over-reacting by being so miffed about this?

When I went for my herceptin infusion today I told the nurse there about it and asked if my MO could write me a prescription...she came back a couple minutes later and asked, "What pharmacy would you like your prescription called into?" Gosh I love my MO

Scmom - I had the same thing with my RO! I had a yeast infection and both he and his nurse simply stated that it is not a side effect of radiation. No offer to help, no understanding, just a look like, "That is not our problem." I was so put off by my RO that by the end I was taking xanax on the days I had to see him because I was so stressed. No personal care at all.

On a side note, I believe my chronic yeast infections, sore throat and dizziness were due to being dehydrated. I was dry everywhere, even though I was drinking water like a fish. That really threw off the balance in other areas of my body. But hey, "that's not a side effect of radiation", right?

Sorry, end rant. I feel better now.

SCMom,

I do think your RO/nurse was correct.

Maybe you do have a UTI and maybe you do not. For that reason I do agree with the response to see your primary physician.

I think it would have been wrong for your RO's office to prescribe any medicine for a possible UTI.

Please note - I wrote possible, and that is my BIG concern.

The basic medicine way to proceed is: a culture of your urine to at least evaluate it prior to starting any medicine. Once you start the antibiotic the culture will be changed and you will never know your baseline.

I am not sure you would have wanted to be placed on the wrong antibiotic.

It is proper medicine to be examined and to at least, at the very least, to have a culture via a urine sample, and the urine sample to be evaluated for # of wbcs, blood, PH, etc.

I would doubt that your RO or the nurse would know what would be the best antibiotic to place you on.

Do they routinely culture urine samples? Do they have an in-house lab to evaluate the urine?

In this current world of super infections, resistant bacteria, and any possible other concerns, I do feel your RO was correct.

It is not so simple, just to call in a prescription.

What is the correct drug? How long should you take it? What dose should you have?

What are they treating? Is it a bacterial infection? Another cause?

Is it a kidney issue? A UTI can be very serious and I do believe you would want the correct approach to actually figure out what you have.

Congrats to the finishers..it's always nice to hear from those at the finish line so to speak.

Im on number whatever.. omg. 18? tomorrow. Was all la la la la la yesterday.. today was a ' thunk' and out of energy. Skins doing well.. sermonas a brat sometimes not the armpit one..but the one on my breast (that only the week before I started was being padded with sanitary towels to catch and keep the fluid away from my skin) hasnt leaked but the skins the worse there. Tolerable though and Ii can forget about it.

My radiologist/oncology guy..is very good. I declared that I was going to use lavender oil in with my aloe gel (which i started doing the very first rads session)..and he's all for that.. to me it just helped with the redness.. Now I am a study.. my boobs are posing for pictures..floozies. (I'm not high btw...I'm just wired after my early 'fatigue') In the week my right rad boob is like all swollen.. I have dubbed it 'porn star boob' (made my oncologist choke)..and the other one.. is 43 year old gravity plus breast fed boob. (more choking).NYWAY..my point being he's watching this to see if it may be beneficial to others.. in that case.. i almost wished that i had left an area 'without it' so there could be a comparison (even if it had been painful) because if it can help someone else..then thats a great thing.

Did you all get the 'radiant' gown? To keep...Rather fetching gown,comes in various colors..at least can get changed at home and then head out..saves time. I was half thinking of burning the thing after I'm done in a ceremony.

Noting what others have said previously.. I started rads 2 weeks after my second incision..seroma and all. Also had auxillary lymph nodes removed so was worried about lymphadema....and that risk was added with radiation but so far so good.

When i started rads.... just a suggestion. I was super nervous of course.. but i made the machine into something else in my head..anything but what it was.. I get on that table. get positioned.. then close my eyes while it's doing its thing.. thinking 'I am fit , I am healthy. I am well'.... then I'm done. I'm a born worrier anyway and know that i had to do 'something' to help myself.

hi Yikes...thank you for your responses. Fortunately I feel confident taking the Cipro that my MO oncologist prescribed (without a urine sample.). He's prescribed this during my chemo (with a sample)...maybe he thought I had UTI's often enough to be pretty sure that's what it was. And Cipro seems to be the go-to antibiotic for this. I don't know if the RO even has cups to take specimens in, much less a lab to culture them in. I see my RO once a week after rads, the nurse has me step on a scale and that's it...no temperature or blood pressure taken.

My alternative to getting a prescription called in would be to go to my primary care doctor, who works in a clinic, as a walk in...I've done this before and have had wait times up to 2.5 hours...not something I wanted to do as the flu has really been going around in my area and I've been lucky enough to dodge that bullet so far...knock on wood.

Call me old, call me old fashioned...I just think that a doctor, regardless of his specialty, is still a doctor and should be able (and willing) to treat basic maladies.

Good evening, Maybe I am old and old fashioned too, but I now have 14 Doctors! I have one for every part that has an issue it seems. I wanted to know my Vitamin D level, and I was told to schedule an appointment to see my GP for that. Ok another Cha Ching in the cash drawer. Then I have heart damage induced by the chemo, Cha Ching off to the Cardiologist. I have a port, big Cha Ching off to the surgery center and the Vascular Surgeon. Then the port surgery was draining so my Oncologist sent me to the ER, and another big Cha Ching for the cash drawer. The ER Doctors did not resolve the issue, so off to the Vascular Surgeon again, and more bills. I had a mastectomy and had blood pressure issues after the surgery so that was 4 days admitted to the hospital. 4 days, I was scheduled as a 23 hour stay. I'm glad I had someone available to feed my fish. So now I have a bigger pile of bills. I have numb feet and hands so I was sent to a Neurologist for arthritis. Really? Maybe neuropathy from Taxol?? So I needed another Doctor to see me and tell me that it was from chemo. Shouldn't my Oncologist know that?? I also have a new Eye Doctor hopefully to correct my blurry vision. Still working on that one. My breast surgeon is shipping me off to the RO on Friday. Cha Ching another big day for the cash drawer. Along the way I acquired a second Cardiologist because my first Cardiologist did not have privileges at the hospital when I was admitted. I also found myself in X-Ray for my feet. The bone pain from the Taxol and Neulasta was unbelievable. It was so bad they thought that I had a broken foot. Report came back degenerative joints, so off to Ortho for a really snazzy moon boot. At least my toenails felt better, it had open toes. At this point, the only person in the building I haven't met is the Janitor!! Now after all that, I see the new RO on Friday.

Sorry my rant went a tad long......My question is why do we need t-shirts etc. for rads? What do I really need for rads? How were the side effects, and when do they appear? Thanks Ladies

Beachbum..

$$ is what I see. I don't know Im having a job with it because im a Brit in the USA (13 years now) wel l'm American. Ive had one dr up until now..and only saw them once a year for the physical...till now.. which ironically has given me a leg to stand on when they try and pass any side effects off as something else.. I really have done a lot of scarlett o hara eyebrow raises when they do that.. and a lot of 'seriously? your going to tell me 'this' or 'that'.. I've never been on medication before other than an occasional tylenol Rads

.. \side effects... * I had a lumpectomy.......I'm only just over half way through so can only comment on what's happened so far.. I have my rads first thing in the morning to get it over with and done..then I'm not waiting on it all day (its not the star attraction!)................ arm gets sore (from holding it above head..after auxillary surgery). swollen boob..gets a bit red too. That goes down over the weekend btw and sometimes by morning it will look better.(deflated balloon)a little bit tender (but i can still sleep on either side)especially the nipple are... sometimes a little stabbing pain now and again (mainly seroma area in my case) but not so it needs any meds..its not horrible.Sometimes it feels itchy..but doesnt last long..esp if i put a bit more aloe on it..its the skin drying out (cell turnover).

I was still in a soft sports bra from the start...avoided anything digging in anywhere..then switched to a kind of cami with a secondary layer on the inside.. I figured the less I had compressing around that area the better..and then nothings getting irritated..your clothes will let you know whats going to work.. my rule of thumb was if it leaves marks on your skin.. take it off. I also make sure this stuff is dark as the marker they put on you or sharpie does rub off on the clothes. I sleep in a loose cotton t shirt just to avoid messing up my decent sheet.........I also TRY to wash my stuff in non perfumed,non irritating detergent just in case..although that doesn't seem to bother me either way.

Fatigue. have to mention that.. was okay the first 2 weeks then i have a great get on with it day.. then a day thats not so well..but it passes.

To rads: I take aloe gel (mix) and a make up brush with some cornstach on it... (for under breast area,)and do that before getting dressed to go home. am wearing the radiant gown to go..get dressed with an undershirt with shelf kind of bra,then sweater. to come home .and really thats it.

oh my radiation techs said don't over apply the aloe.. i made sure it sinks in before I get dressed.. they said try and not get the skin too wet.. but everyones different!

Birdgirl.. I have my moments LOL. It's helping!

Coyote.. LOVEEEEEEE what you do.

Please remove me from the winter rads board. I found out yesterday that I will be having more surgery first. I need an ALND the first week in Feb, 3 weeks after finishing chemo and that has to heal before starting rads. So sorry. Guess I will move to the surgery one. Love, Jean

zjrosenthal - So sorry to hear about the delay and the new procedure being added to you treatment plan. That will probably put you into a Spring start.  You know what they say, "Spring is a new beginning."  Please keep us posted as to how it is going for you.  You are still a Winter Warrior, fighting the same nasty stuff we all are.  You don't have to leave us! Add the new topic to your favorites and be super informed. Sticking with us while you go through your final chemo and surgery will put you a step up on knowing what to expect when you start rads in a couple months.   

Thank you for your nice comments.  I really believe that creation in any form is very healing.  It certainly makes me feel renewed and whole.  When I can't or don't get my hands into something, I really get mentally wonky.  It's been one of the hardest parts of the last few months... I just could not find the will nor did I have the mental wherewithal to do squat, creatively.  I know I am getting better when I start thinking creatively. There is more to this than posting some photos of what I have done.  It's a distance away from doing.   I'm kind of scared to really put my hand to it; hence, several days cleaning the studio.  My tools are all looking really good - all sharp and polished.  At least I'm in there. 

When my Mom was failing with Alzheimer's disease, I kept trying to encourage her into her art (she was an exceptional artist), but she didn't go there.  I understand now that she could not go there.   Hopefully, lesson learned. 

Pita and Carynbrit - Please do put photos up.  Let's encourage each other to keep our creative selves alive. 

The NevadaCoyote's Studio and Den