SEPTEMBER 2009 RADS

MTG

Spent the long weekend at my best friends home in DC, School starts tomorrow for her 16 year old son, my godson. He keeps saying he's not ready, doesn't want to go, and we can't make him. As I listen to him, with my start date slowly approaching, I confess, I feel the exact same way,  I fantasize about saying screw this, I'm not ready, dont want to go, can't make me !

O3132W

dsgirl:  Wish you lived in Indiana.  I found a foundation that provides $500.00 for b/c Indiana women to be used to help them while going through radiation treatments.  There is a list of things the money can be used for like childcare, petcare, yardcare, and I choose to receive gas cards.  I got two gas cards for $100.00 each and I got one gift card for $100.00 for Steak and Shake.  I still have $200.00 left and it is good for six months.  Check out their site www.iwinfoundation.org   If you dont live in Indiana maybe there is a foundation like this where you live.  A nurse at the radiation center told me about it.  Cathey from Indiana

Titan

MTG...I know exactly what you are saying..but your godson will go to school and you will go to radation!  I have had only 4 zaps and they were absolutely nothing to deal with at all...

BetsyBuzz

Good morning ladies...I agree starting back this week is harder mentally than I expected. We too went away for a lovely weekend at the beach. The weather was nice...stormy at night but sunny during the day. Funny, I didn't miss my hair being in tangles from the wind but my fuzzy head did get a little cold.

It' decided I'm looking at Rads week by week. Besides there are only four tx this week and I will reach the half way point on Friday. YIPEE! Time seems to be flying by. Thankfully, I've had little or no reaction up to this point. Good luck this week to everyone starting.

O3132W- what a great program. I hope dsgirl has access to a program similar.

brookside

Hi guys

I am going to do the sims thing in about an hour and I am just freaking out.  It really isn't the process, it's the fact I don't have insurance.  I found out it will cost around $50000 and that added to the $36000 already accrued is just insurmountable....don't ask, I've tried all avenues for help and there isn't any for someone who makes a decent salary.

A little story.  When I first went after my lumpectomy to see the radiologist here in town, I was told I had clean margins and was a perfect candidate for this new thing called xoft.  (like mammosite - 5 days, twice daily).  I was also freaking out then and asking about the cost of all this, telling this fella I didn't have insurance.  Next thing I know, three days later, I get a call from the rad's nurse telling me 'your margins were not clear (which they weren't so they lied to me in the consult) and that 'good news, you just need a mastectomy".  Also a clinic in another town had a great surgeon who really knew how do do a good mastectomy.  So stunned I saw her and she told me they just missed the margins and she could clean up the margins (which she did) but then she turned me back to these fellas in town for radiation.  I am sure they will be so glad to see me.  I am just freaking out and anxious out of my mind right now.   Thanks for letting me vent!!!  I just need some bucking up.  I really am freaked out though cuz I'm afraid how I will ever pay for all this. 

Your neurotic friend,

Becky

brookside

PS

Regarding that Xoft thing they wanted initiallyy to do on me, this is new and I spoke to one of the receptionists at a gathering and I asked her how that xoft thing was doing and she told me they had not even done it on anyone yet...I would have been the first one, a guinea pig so I'm glad that thing fell through because the surgeon who flubbed my first surgery would have been the person who did this.  YIKES!  So I just get tomotherapy instead and I sure hope that isn't too new to be effective either. 

Love, Neurotic Becky

kawee

 My sister has insurance that paid 80% but couldn't pay the rest.  They wrote it off.  She just talked to her Rad Onc.  They even arranged to have her picked  up and took her home  because she lived 45 minutes one way and has a big pickup and couldn't afford the gas.  This was in Las Vegas.  Surely, there is something.  Are there other rad places.  A girl at my Rad place told me they give big discounts for people that have to pay cash.  Please, keep checking.   

brookside

Hi guys.

I just got back from the sims thing.  Does everybody get a body cast?  Does every body get a CT before each treatment??  Or is this just the tomotherapy protocol.  I am a bit confused.  The tattoos are okay AND it didn't hurt too much at all...just a slight prick.  I have freckles and so now I have 3 black freckles.  That is just fine. 

Since I am not an emergency, I now have to wait 2-3 more weeks to be scheduled in for the 28 treatments.  That sure seems like a long wait.  But they told me I am just getting this as a preventative measure so that is why the wait is so long because there are more serious cases that need attention. Dang  I WANT THIS DONE so I can go on with my little life.  Oh well. 

Kawee...I DO get a whopping 8 per cent discount because I will have to pay this on my own.  I have 6 people I have to pay (surgeon, 2 hospitals, radiology, anesthesiology, surgeon) so I will just divide that into the $300 a month I can afford to pay and hope for the best.  The one hospital that did the reexcision will get the most because they did the best on me.  My local hospital is the most but they are the poopiest ones so they'll just get $100.  I sometimes just lie in bed and pray that it just goes away but I know it wont.  That's what I get for not being able to afford health insurance.  Oh well. At least I won't be spending that money on friviolous things like food or entertainment or stuff like that.

Love, your fat little buddy with 3 little tatoos.

Becky

dsgirl

Hello Ineia,

I am new here too, and wont be starting radiation for another week, so I am not much help yet, but I did want to welcome you and tell you from what I read it takes a long time for the simulation and get you all ready, then when you go for the actual treatment it is short term, someone said it takes longer to undress and get in there, than the actual radiation. Another wrote hers took 10 minutes. Don't know if pain meds are allowed, but you could ask, and explain why you need them. Good luck, come back and tell us how it went.

dsgirl

sly20

I had my simulation last Monday and got the tatoos.  It was not bad.  They scheduled me to start Last Thursday then called and told me to not come until Tuesday.  Yesterday they called and said don't come today.  The PS and the Oncologist need to consult and they can't seem to get together.  So, I am just hanging out (actually working)  waiting for those two to get it together and get me going so I can get this part over with.  I will have an hour drive each way every day.  And thank goodness I have good insurance and I even have a small cancer policy that will pay for my trips back and forth. 

Sherry

dsgirl

O3132W  Thanks for the information on driving expenses, I checked the website, then googles to see if anything came up for my state, TX, and did not find anything yet.

I am hoping as I get started with the treatment to maybe find another fellow either bc or other cancer survivor who comes from my town and maybe we can share rides once in a while. I think just the monotomy of the daily drive is a little daunting, seems like I aleady know every field and every thing that is planted in those fields along the highway, every farm or ranch house, and who sells veggies and eggs, and who have kids for sale, lol, when I first moved here I was floored, turned out they meant goat kids, lol.

Since I dont have to work (outside the home and yard) I was wondering what time of day to have the radiation, I was thinking late afternoon, so I could get a day "in" before the tratment, I am expecting to feel somewhat tired from it, but don't know of course, any ideas ??

dsgirl

kawee

dsgirl - I don't know.  I just changed mine from 12:00 to 10:00.  Seems to not break up the day so much.  If you're a morning person, seems the earlier the better.  I know for myself, I'm a little more tired later in the day.  Besides, when I first went, they assigned my time because they are really busy.  It is my fourth week now and I was just able to change it.  Good luck!!!

Cake - Today is #17!!!!! Almost half way thru!!!!

BrendaSharon

YEAH!!! for you :-) I hope I have boring cancer as well. My diagnosis so far is about the same. I had the lump for a 2.5cm mass on Sept. 3rd. They removed three guardian nodes and all where negative. I go this Friday for my post-op. So, I'll know my treatment then for sure, I HOPE. I think they said radiation for sure and hormone blockers. What is the "Tomo" therapy?

I am blessed to have it so easy so to speak & happy you where blessed as well!!!!!

Mosie8137

Hello,

I'm a newbie! Had my sim last Monday, everything went well, got 5 tats. Went for my first treatment yesterday and was disappointed as they had to cancel the treatment as the Dr. was not happy with the "numbers". They have to re-calculate my entire treatment and I will go tomorrow for my first treatment. Has this happened to anyone? I wish you all the best! 

brookside

Hi Brenda

Ya, lucky me.  Having any CA is just crummy in my book.

I had to look up what tomotherapy really was!  The hospital just touts on tv but I never really figured out what it is technically.  It is a linear accelerator that integrates computerized tomography (CT) to acquire 3d images of the area being radiated.  It is more precise than conventional radiation as it accomodates patient movement and any change in area being radiated.  It allows continuous radiation from all angles around the patient, thereby minimizing damage to healthy tissue.  There are decreased side effects and a shorter time of treatment. 

I didn't think that up from my head, I had to read about it.  I just know our little podunk of a town (18000) petitioned for tomotherapy as we are sort of a cancer mecca.  This is a paper mill town and it seems like EVERY one here, especially the mill workers all get some form of cancer by the time they are 60.  We were mentioned in some study as the worst county (wood county wisconsin)  in america for cancer.  Lucky me. I wasn't born here, I actually chose to live here.  What was I thinking!  There were 3 kids in one class in high school who had osteosacromas and 2 kids in another class with brain tumors.  These cancers were 1 in a million chances of occurrence and to have more than one kid in the same class is pretty crazy. 

I don't drink the water here but some nights it smells like a truck full of dead rotting animals parked outside my window.  Otherwise, it is a quaint and lovely place.  Like I said, lucky me.

ccbaby

This may sound corny, but I just realized and I just had radiation #9 on 9-9-09! I saw the doc afterward and he said my skin is looking normal for the amount of treatments I have had. It is a little bit pink and the center of my chest is pinker than the rest. 

elimar86861

Yeah, I have a pink rectangle tan line now, but holding up o.k. after having 12 Tx.  My darkest area is the part that would show if I had a tank top on.  I'm past 1/3 of the way finished now.

kawee

Well, I just finished #17 and boy and I really getting those red bumps.  Now they are on my chest running down over the top and the inside of my breast.  Rest of breast looks good.  Dr. said one week ago they were inflammed hair follicles.  But it's getting alot worse.  I'll ask him tomorrow.  Doesn't seem like overall redness, just red bumps. 

windshift

Whoops - I just posted to August Rads and meand to post to September.  Hopefully I'll get this right this time.

I'd like to jump into this group since I'm having Rads throughout the month of September. I had #11 today and am now 1/3 through the treatments. I have just started getting a little redness, oddly enough it seemed to occur directly after todays' session (either that or I'm just not that observant). My Rad Onc gave me two small tubes of Aquafor and said "a little goes a long way." She said that the two tiny tubes could probably last through the remainder of the rads. I find that if I put it on while damp it seems to work pretty well. (It actually makes a pretty nice handcream.)

 Q - Does anyone still have a Seroma, and if so have you been told that you will probably need an additional Sim?  Also, I'm almost embarrassed to admit it but I don't really understand the bra thing. I have been wearing my regular bra which is not an underwire but should I expect to have a problem with it?

sly20

I saw the PC today and they have discussed what to do with me.  We are going ahead with the radfiation and start tomorrow.  I am very fortunate to get a 4:30 time slot so I can leave from work and go down in time for appt.  Finally, we are going to get this started.  By being so late in the afternoon and driving so far, I won't have to cook supper for the next six weeks.  There is always a positive side to everything.  (obviously I don't like cooking)  A bowl of cereal is good enough for me but my sweet husband likes a meal.  He is a pretty good cook.  Thanks for all the information from all.  I don't even know what I need to ask yet but I bet i figure it out pretty quick.  Good luck to all.

kawee

Sly20 - you'll do great!!  Good luck to you.  It goes by quick.  I can't believe I'm half way done.

BetsyBuzz

Windshift - if your bra is working..why mess with a good thing?

I have a seroma just below my scar. I did not have to do another sims. It seems to have gotten harder since I started rads. My rads onc has not been concerned about it. He said if it caused me problems I should go back to my surgeon and have it drained. They do an x-ray every week, if it starts causing problems I'm sure they will see it there first. My perspective...it fills the divot created by my lumpectomy making me more "balanced" (at least physically, mentally now that's another story)!!!

Today is number #16 of 33 for me. Tomorrow is the half way point, or technically .5 over - why don't they make the appointments in even increments so we can divide easier? Or maybe they can only do one half the rad, I digress... Anyway, Kawee congrats on making the half way point, the end is in sight!

Titan

I just finished #8 today...I may be speaking too soon but I can't believe how easy this is...I can see the chemo area when I leave the rads area and I can't believe it has been 5 weeks since I was sitting there for hours and hours and hours...believe it or not I feel lucky!  Just think...our hair is coming back, eyelashes, eyebrows (does anyone's eyebrows itch?  Mine drive me nuts..I have asked this before but no one else seems to this issue?)  and maybe our brains are finally getting back to normal...except for Betsys!  HEE HEE!  Anyway, my chemo brain is still lurking..I lost my ONLY eye brow pencil the other day..I just put it down and it was gone.

 Then I lost the cat's purple pooper scooper!!  How in the heck do I lose this huge purple thing?  I guess the only good thing is is that I remember to buy another eye brow pencil and a pooper scooper! That's a good sign

aris

Hi everyone,

I can finally join in here! I had my first treatment today. It was long, but I expected that. Nothing to report other than continuing to obsess about what sort of cream to use. I was disappointed when my nurse told me I should stay away from deoderant other than the "natural" ones.

One down and only 32 to go!

Pam

elimar86861

I'm actually doing better this week, my third week, than I was last week.  It's like I reached a certain low level of soreness and have not moved beyond that point.  I'm a couple shades darker in my Tx area, but my skin does not burn or itch yet. I'm on #13/33 so maybe it is early yet. 

Lmflynn

Hi everyone --  Can't believe it's Friday tomorrow -- this week has flown.  I'm down 7 and I'm embarrassed to say I don't know how many txs I have scheduled.  I think 33.  I'll have to ask the RadOnc next week when I see him.  No SE yet -- few twinges here and there around the scar -- but am tired and short of breath.  Using Caldera Gel every day -- anyone else?

Sounds as if everyone is doing pretty well - also I am so impressed with everyone's (basically) positive attitudes! 

kawee

Aris - Crystal is a good deodorant.  Believe it or not it really works, who knew??

lollys

hi everyone--well it is 8 down for me and 25 to go but who is counting!!  

Titan --I know it has has been 6 weeks since chemo and it seems like a blur although everything seems like a bit of a blur--

I am still using Biafin and Sweene cream --the teck said she usually sees skin changes after 3rd week--hoping not--will keep using the cream often --she also said to put wet washcloths in the refrig if skin gets red and hot --it helps with the heat and redness along with aloe in the refrig--hoping my implant wont be afftected but just dont know yet --I have an implant not TE and they say it can be a problem--we will see-- hair is still fuzz salt and pepper I think although I have been blonde most of my life (highlighted and slightly bleached) so never realized how dark my hair is--lovely--no eyebrows or lashes yet--look like a deer in headllights--lovely-- anyway this too shall pass--Toms deoderant is good also--most drugstores and trader joes and whole foods have it--

hope everyone continues to have a good week and look forward to the weekend--time for my nap--if I dont take at least 45 minutes I get really achey and non functional--oh well onward we go--stay strong eveyone--Laura 

BetsyBuzz

Hi  all,

I had an amazing day today. I'm taking Thursday's off through the duration of rads because everyone keeps saying how tired I'm suppose to be, but I'm not feeling it. I feel like rads is a walk in the park, at least so far...Ee Gadds! I hope I just didn't jinx myself.

The weather was fabulous today, so I cleaned our patio, hacked back my mammoth artichoke plants, mowed the lawn and felt great afterward. ENERGY has returned... at least for today. I even filled the bird feeder...those poor little buggers have been on their own for the last few months.

Speaking of birds...yesterday, I was proudly showing off all my recent hair growth. I was talking about the next stage being the Gerber baby look etc., when my co-worker turns to me and says "well your look is more like the tweetie bird look". LOL Hey...I just confirmed tweetie bird did have a few hairs.

Titan - Did you looked for your eye brow pencil in the cat box? If you find it...I'd toss it! See my brain is being to work again too!

Lesleyanne67

I had my consult yesterday and go in for mappong CT scan 9/22/09 so  not sure if I should be joining the Sept or Oct group.  I will be having rads all the way until Nov it looks like.  33 treatments.  I am EXCITED though I had full axilla dissection and since only 1/29 nodes was positive and it was encapsulated they are not going to give rads to the axilla as the Dr said it was fully dissected all we would do at this popint is increase lymphadema risk.  I am 41 already had 4 months dose dense AC and Taxol and bi-lateral Aug 20 so cannot wait to finish rads.  I know I know I have not even had the first dose yet.  Still have to have my ovaries out and have that consult 9/15.....

Best of luck to all of you.  Quick shoult out to a couple of my pals from April Chemo group!!!  : )

Lesley