Any April/May 2012 rad girls out there?

Anonymous

I start April 11, with 33 rounds of rads.  I'm wondering if there are any others who start in April so that we can help each other through this, together.

I'm a litle nervous and mostly worried about increased risk of lymphedema since I have to have a boost at the end...although my RO said my risk was about 15% overall.

Hope to hear from some of you starting in April!

Claire in Az

fredntan

Hi, I start march 28. thats next wed! kind of excited to get last phase of treatment started. I get 25 zaps. I have torture expander and am fair skinned so we'll see how it goes. just now starting to feel better from chemo.

luvmygoats

Hi Claireinazand fredntan

Been hoping someone would start an April rads group.  I go on Friday to meet/talk with RO so don't think I could start before very end of March.  Good to meet everyone here.  Can't post during the day due to work but will join in in evenings.  Looking forward to helping each other through this.

luvmygoats

Was so hoping this would be an active topic.

Joanne_53

Hi Clair, fredintan and luvmygoats --

I am an April rad girl myself - start on April 10th with 16 rounds --

went on Monday for the CT scan/simulation and tattoos and I am ready to go.

I have been checking in on the March group too.

Joanne

luvmygoats

Joanne_53

OK, now we are a band of 4.  I'm ready to go, too.  Had my LX on Feb 21 so I'm a  little behind others I think.  Started back to work 1/2 days last week and full time this week.  Just now getting the majority of the Dermabond off my incision.  Glad to meet you on here. I have been checking on the March group as well.

fredntan

hey does anyone know like what kind of soap to wash with? isn't it maybe dove? something gentle. I've allready got my aloe vera gel from that medical store. at least I think thats what it is. what is everyone planning on using?

hey luvmygoats-do you have goats? do you make goat cheese? your picture is cute

Dianarose

I start in 3 weeks. I am really not looking forward to it. I had radiation on the other side in 2005 and it really kicked my butt. I was so tired after week 3. I need to find out if there is something I can take this time to help with the tiredness. I was supposed to have the mammosite and did all my research and was excited until I woke up from surgery to dam positive nodes.

Joanne- why only 16 rounds. I was told it would be the same as last time, 33 rounds. Have things changed as far as how many since 2005? I would be so happy if it were only 16.

fredntan

Diana-how long before your energy returned? Its taken me three weeks to get my energy back from chemo. went for big walk today. tried to do another one later and my legs were screaming.

Joanne_53

Dianarose, I am not sure why 16 -- surprised me too - thought it an odd number -- I was told either 16 or 25 depending on the CT scan and they came up with 16.

this is the link for skin care from here

http://www.breastcancer.org/treatment/radiation/skin/care.jsp

My RO told me to use Glaxol base so I have a big jar of that -- going to start putting it on now so that my skin is in good condition before I start. I also have to buy an electric razor --

Any other ideas --

luvmygoats

I'm waiting to buy anything until I meet with my RO.  I think aloe vera gel without alcohol is hard to find but seems to be the standard I've seen mentioned the most.  Actually started a file of bookmarks of radiation creams everytime I see a different one on here.

Fredntan - You got your's at a medical supply store?  Never thought of that.  Looked at Wally World tonight; again only with alcohol.  Found Vitamin E oil at local grocery but lots of additives and alcohol too.   I think the soap is Dove Unscented.  Hubby uses that for his eczema.  Or I think Purpose soap is OK, too.  I read no washcloths on rad side but darn it I still need some super soft ones.  I finally resorted (with BS approval for - Ick - Vaseline) last night to baby oil/aloe vera gel to loosen the Dermabond. Can't imagine what trouble Vaseline would have been to get off and didn't get a lot of baby oil off.  But it has been working all day and more is loose.

Yes, I have a herd of 15 Nigerian Dwarf Dairy Goats.  No, unfortunately no time to milk and work though I do have one doe bred for late April.  Planned and bred b4 BC diagnosis.  Oh, well, it's not her first time more like her 4th so I'm sure she will do fine.  I drive about 45 minutes into work.  I'm outside of Fort Worth.

My MO said 33 tx but I know he's not in charge of rads.  Got a female RO, the one I've heard good things about.

fredntan

 stopped by mylocal medical supply store for something else and my friend that works there pointed this stuff out that I'd need.

I'm looking at bottle now. Its called Alra  therapy lotion. says its 100% aloe vera gel. vitamin E, collagen, allantoin-says this is to soothe and prmote new tissue growth, and lanolin. its unscented and alcohol free. I can smell the lanolin

I've seen alcohol free aloe vera at whole foods

4oz bottle was 12$. I've got a male RO, nice eye candy. but he's good. went to harvard, specializes in breast RO. doesn't hurt to have something nice to look at

Joanne_53

silly question -- where do you find a medical supply store  --

luvmygoats

Oh, there is a Sprouts near my office.  I'll try that.  Central Market here too but I think that is Texas only.  The only Whole Foods near me is in Arlington near halfway to Dallas.

I have a couple of friends in my circle who have had BC.  Never think of Fort Worth as being that big but we have had different MOs and ROs though out of the same gigantic onco practice.  I picked by reputation though my MO I was acquainted with from working with him a little.  BS was picked by my gyn though I did/do like her; part of his practice group and I really appreciated that between him, my internist and BS the importance of electronic health records that they all shared records.  I did not get my medical clearance for my LX until the Friday b4 Tuesday surgery because of extra heart tests and BS could see all of them online.

Cindyl

I go in Friday to "get started" not sure exactly what that means... We'll see I guess.

luvmygoats

OH my gosh.  Reading on another thread about copays for rads.  Anyone know about that?  Insurance I know is very individualized.  Spoke with financial counselor at onco office with 1st appt and she thought no copay but did not sound confident.  Sounds like this will be the year we hit the % on medical on income tax.

luvmygoats

Talk or "for real" start?  Mine goes in stages.  Friday for me will only be talk/questions.  Gosh really for 1 1/2 to 2 hours???  I don't have that many questioins.  Sure I know exam in there somewhere, what's new about that.  As others have said,  what's undressing again.  Went today for bone density as I know I will be on Arimidex.  Drove by it once and no cars.  Drove by again , no cars and just walked in.  No other patients.  It was walk in anyway no appt.  Gave up putting drivers license in that window thingy.  Wrestled too many times with it these last few weeks.  Now in a nice little slot like credit cards easy to get to.

Cindyl

yikes.  I don't know if there's a co-pay or not.  Hope not, but I think I've just about reached my out of pocket max for the year.  But I guess it doesn't matter...  Just have to do it

luvmygoats

Cindyl   Oh yeah.  Reached and exceeded out of pocket max.  Oh yes - will just have to do it to it!!!  Kick that BC out of here/there.

LovesDogs

I do CT simulation 3/29 and start 28 rounds on April 2.  Anyone out there doing rads with tissue expanders in place?

fredntan

Joanne you can maybe google search for one try also medical pharmacy. Your RO people may also know where to get the creams. I've also seen radiation cream in those stores that sells the mastectomy bras

I hope I don't have to pay a thirty $ copay for all 25 visits. Think I will just wait until next week for copay news

luvmygoats

I've read RO will give you some samples of their preferred cream.

Joanne - Google medical supply or medical equipment.  I would telephone b4 going.  Save you some time/gas money.  Don't know if y'all in Canada would call it something else.  I did the same for FW and got stores I'm familiar with.  Sorry - didn't see your question earlier.  Working online at the same time for job.

LovesDogs - No TEs.  Only LX and SNB.

Claire_in_Seattle

Hi.....

You ladies are about 2 years behind me.  Group Health here in Seattle uses Chantal Aloe Vera Gel in their changing rooms (so you can apply immediately post zap).  They sell it in their pharmacy downstairs (~$5 per bottle, and one bottle was enough).  So was really easy to get.  I supplemented with Bag Balm.....I knew from growing up on a dairy farm that it really helped chapped udders/teats, and it worked just fine on my own personal udder.  I knew our cows weren't fibbing.

Hauled out the can last night when my hot water bottle got a split and scalded my right hand.  So iced it, and then Bag Balm.  Only minor redness today.

As for the zapped area, only minor peeling.  I did slather on both the Aloe and Bag Balm though.

One other tip.  I found the hardest staying motionless for several minutes.  Then, I got the great idea to take myself to that amazing space post mind-blowing sex where you are extremely calm.  Worked great most of the time, but backfired a couple when I got an attack of major horniness.

Then, I was climbing the walls.  (But still had to remain motionless.)

Congrats on being at this stage. - The other Claire

Moderators

Hi April/May gang,

Popping in here to share some helpful info on the main Breastcancer.org site on Radiation Therapy, including types of radiation therapy, what to expect, and how to manage side effects.

Hope this helps!

--Your Mods

luvmygoats

Went to Central Market today.  It is a Texas chain from HEB stores.  Lots of Vitamin Es, Calendula creams and Aloe Vera. OH OH and the prices to go with them. Forgot to look at soaps but bet there are some mild unscented ones.

Fredntan -  100% Aloe with vitamin E, collagen, allantoin.  Hum - I think I saw Aloe real close to that.  Guess when I heard 100% Aloe I thought it meant without anything else.  But I don't see alcohol in it so that's good. 

Nervous about tomorrow.  Have to be there at 7:30 am for appt with RO.

Cindyl  - I'll be thinking about you tomorrow, too.  Best of luck!

Hope to see others join in here too.

Joanne_53

I am going to Florida for vacation tomorrow so will look in some of the stores there to see if I can find different lotions, creams then I can get at home (Canada).

Fredntan - in Canada we don't pay copays -- our insurance covers everything ....

Good luck tomorrow Luvmygoats - where in Texas are you?  My parents used to live in Gilmer and then went south to near McAllen. 

Cindyl

I had my cat scan and got my tatoos today.  I go in on next Wen. for the "dry run" then start radiation on Thursday.

luvmygoats

Had my talk with RO yesterday.  Liked her.  Has me doing stretching exercises I guess in preparation for simulation.  Go Wed. 3/28 for CT planning.  Gave me samples of Aquaphor (yuk).  I've used that for basal CA removal.  Can't imagine the staining of my scrubs with that and trying to wash it off.   Application is optional.  Also received samples of Xclair her preferred cream.  My insurance is charging $50/tube nonformulary.  Nurse says most pts use 2 tubes sometimes 3.  If I order 2 tubes and then need a third tube it goes to I think $150/tube.  Guess I'll call and check on.  RX called in to my pharm. to I'll see what price it ended up being.  Central Market did have some good sounding Calendula creams.  Might be the ticket for post rad care.  My instructions say to not apply anything 2 hours before treatment.  The Xclair is supposed to absorb great.  Aquaphor is greasy and I can't imagine tx with that still hanging around on there.  Did find out that left over Dermabond is not a problem which might be useful for others.  Mine is 95% off.

She_Is_Virgo

Hi,  I just started rad to my lymph nodes and neck.  I'm scheduled to have 25, with 3 boosts for a total of 28.  I have no surgeries and right now I'm getting radiation to help shrink the pain on right side lymph nodes.  I am also on chemo. I have had 3 treatments this week.   I'll be happy to be a part of this group. 

She_Is_Virgo

I found Lindie Cold Paks.  www.lindie.com which can help with the reactions to rad.  I also got a tube of Glaxo, I think that's name, will double check when I get home.  I have the cold paks in the freezer which I will wrap in small towel and use when I need.  So far so good.

luvmygoats

She_Is_Virgo - Read your profile.  You have been on quite a ride, girl.  Glad to have you here but sorry that's needed.  So you're on rads for pain control, right.  Read that you're in Tulsa.  I'm in North Central Texas.  We'll keep up together!