December 2010 Rads

Sherryc

I thought since I would be starting rads tomorrow 12/1/2010 that I would start a new group.  I have had many delays and thought for sure I would have started in November, but here I am.  Hopefully there will be others to join in this group and share experiences.  I have learned alot from the November 2010 group of ladies.

I will be receiving 34 total rad treatments (28 reg and 6 boost)

MrsNice

Hi Sherry -

Thanks for starting this thread!  I'm not entirely sure if I will actually start rads in December, but I do have my CT scan this Friday to start the simulation process and get moving.  I hope to start this month as that means it will be over some time in February and I really don't want to drag this out any further!

I'm very curious to know about your experience, SEs, etc., so I'll look forward to updates as you go along.

Kathy

MrsNice

adding to my favorites

Sherryc

Kathy look forward to sharing with you and hearing about your experiences as well.  I had my simulation three weeks ago.  Usually people at my clinic start in 1 1/2 to 2 weeks but they had issues in my plan being to close to my heart and the rad doc made them recalculate it until he was happy with it.

rachel5738

Hi there---I finished chemo last week and will have my CT simulation for rads in a couple of weeks so I will join up here although I may be a crossover into Jan I will be having 25 rads plus 5 boosters. I am worried about my skin as I am very fair (British background) and have always had to wear SPF 60 in the sun to avoid burns. I have read up on the November rads board about creams--so far my Rad Onc just recommended Glaxal Base and that is it. I am also curious about energy levels etc during rads---I am hoping to get energy back after the last few months of chemo. One step at a time (p.s Thanks for starting the group).

Sherryc

rachel welcome.  I am also fair skinned and worry about it as well.  I always use baby spf 50 when in the sun.  My doctor has prescribed xclair cream for me so I will see how that works.  It is suppose to be very good.  I was to start today but just got a call from the tech and they are having some maintenance issues so I guess it will be tomorrow.

michelekb

I will be starting rads next week. I had my ct scan two days ago. I was so glad they didn't want to tatoo me. I would have refused. I have enough marks on my breasts. They used paint pens to mark the spots and covered them with clear stickers. I will have 28 treatments. I have TE which are fully expanded. I am very worried about how radiation will affect them. I really don't want to mess up my recosntruction.

I am also very nervous about skin issues. I am scared about being burnt badly by radiation. I would like to here what everyone is doing as far as skin care. What is being recommened by your RO? I am sorry we have to do through this. Let's pray it will go by quickly for us.

toni30

Hello Ladies:

Happy to be joining this thread.  I finished chemo in September, and had a lumpectomy a month ago.  I will have my CT scan this Friday and am scheduled to begin rads on December 13.  I am scheduled to do 16 with another 5 boosts - 21 total - which means I will finish around January 12. I am still feeling tender near the scar, so I'm a little worried about assaulting my poor boob even more!  I will let you know what creams they recommend.  Toni

Sherryc

welcome Michelekb and tonie30--Looks like we will all be taking this journey together.  My dr. has prescribed xlcair cream for me.  I am suppose to use it three times a day.  It is expensive so I hope it is good.  I have read on the November discussion board that alot of people have used Aloa Vera, Aquaphor and Miaderm.  Michele from what I have read about TE I think people have been pretty successfull with them during rads.  I was on the Nov rads because I thought I was starting 2 weeks ago but had delays.  Was suppose to start today but they were having problems with the machine so hopefully tomorrow I will start.  I ended up with three tatoos, they are really small and don't bother me.  My scar is in a much more obvious place and not sure how I will cover it with a swim suit.  I will have 28 reg rads and 6 boost for a total of 34. I will finish mid Jan.

jo1955

Sherryc - Thanks for starting this thread.  I will finish in Dec and would be more than happy to answer any questions the newbies have and share my experiences.  Rads can be overwhelming and talking about what to expect can relief some of the anxiety.

Sherryc

Jo thanks for joining this thread.  I know you will have some good imput for us. Pray that I do not have any more delays and can start tomorrow.  I will keep you posted.

jo1955

WELCOME NEWBIES - I will be finished with rads in Dec and welcome all questions you may have.  I am also willing to share my experience with rads.  Just ask here or PM me.

Jo

ebann

Sherry C: Thank you for just starting this thread. I was looking for one last night and was thinking tonight I would start one. So this is great.

This is my 2nd time going through rads. My experience with my breast was alright. I did burn lightly and towards the end was very sensitive to everything. I did mine in the summer so it really felt everything. I became very tired and had to rest a lot. It was very draining and gets old going every day. I used Jean's cream. It did a nice job for me. http://www.jeanscream.com/brochure.pdf You put it on 2 hours before treatment and after. I really liked it. I tried the other one that have been mentioned and found they did not work as well. I hope this all helps.

I have a recurrence and now am dealing with bone mets. I started my first rad today. They will be radiating my hips, femurs and my spine. Dr told me that I will experience nasuea, vomiting and diarrhea cause of the location of my bowels. So I am not looking forward to that. Dr. mention this time it will not burn me as bad. I am looking at starting chemo next week.

Looking forward to getting to know you and wish you the best!

michelekb

ebann,

I am sorry to hear that you are going through radiation a second time. I hope that the side effects will not be severe and they can control or shrink your bone mets.

Sherryc.

It is nice to hear that many people do well with TE and radiation. I look forward to getting to know everyone on this thread.

packjen

Hey Michelekb, I have TEs and went through 25 rads treatments -- finished early October -- and really didn't have any issues.  I was really nervous about the whole thing too because even though there is A LOT if breast cancer in my area, neither my PS nor my Rads Onc had ever treated a woman with the TEs-then-rads combo.  I was so worried that I had my Breast Health Coordinator (social worker) call the head of Rads Onc in another area and discuss my situation with him, plus I got a 3rd opinion outside of my network.  Both of those doctors said they would not treat me any differently than if didn't have TEs.  Being fully expanded was the key because you don't want to try to stretch the tissue after rads.

I used Emu Oil 2-3x per day (brought it with me to treatments and applied it in the dressing room too) and even though I am lily white I only ended up with what I would call a mild "sunburn" -- mostly under my arm where I don't really have any feeling any more.  I got the Emu Oil through Amazon and I would highly recommend it.  It was about $25 for a 4 oz. bottle and that lasted my full treatment.  BTW, after I applied the oil to my chest I would run my oily hands over my bald head and now I have really thick hair about 2 inches long (finished chemo in July).  I really think the oil helped with the hair growth too.

Also very important to stay hydrated.  Drink tons of water.

Anyway, all you lovely ladies, you are not alone.  Rely on each other for support and feel free to PM me too if I can be of help.  

Jen

lexyloohoo

Thanks for the info on Rad with TEs.  I have the TEs and they didn't think I would need Rad but thought I should have a consult.  Have had 1 te fill and going for only one more.  Had my first round of chemo today no real side effects so hopefully they will stay at bay.  So with TEs and rad does the ps just wait to do the exchange till rad is complete and does anyone know if you can do herceptan and rad therapy together?  Have 5 more cycles of tC and than the remainder of the year with herceptan.  If I need rad therapy would hate to have to wait an entire year.  thanks for any info 

Tg5471530

Hey everyone!  Like SherryC I was supposed to start Rads in Nov.  But I couldnt lift my arm past 30 degrees because I had a frozen shoulder after my Bilat-Mast/rest of nodes out (already had axillary nodes out in May) with TE.  I had neo-adj chemo from May to Sept 5th and was on Tamoxifen for 3 wks, but was taken off due to my body not tolerating it at all.  Its been kind of scary knowing that the cancer could still be growing in me during my wait.  I went in today for my Mapping/tattoo/bolus making today.  They said that I was a challenging case.  My arm was still very low which made it difficult.  Plus, I have TE in and they need to miss my heart, and get my nodes under my arm and above my breast (i forget what that area is called).  The Rad onc said that I will be getting 28 treatments.  He wants to start me ASAP but need the advise of some other experts to finish the planning.  So for now I am starting on the 15th.  He said that he will try really hard to get i done quickly and get me in sooner.  By the way, how many tatoos or marks did everyone get?  After today I have 10.  And yes they are tattoos and they did hurt.  Hopefully they dont have to give me more when they have the final plan.   At least they were all very nice and willing to do anything to help with the pain.  The mapping alone took 1 hour and a half.  Staying still was soo hard and painful.  I should have taken pain meds and anxiety meds first.  I already had muscle relaxers in me and the Dr prescribed me vicoden for the future.   Good luck everyone!

Tg5471530

I also had my TE filled before I started Rads.  Actually my PS filled them a little bigger than what I wanted to take into consideration the skin tightening during Rads.  My Rads Onc told me that the amount of rads given actually goes down with them compared to without them, or with a lumpectomy.  Its also a little more complicated when it comes to the planning.  If they are filled too much they may have to have some saline taken out.  But that wasnt a prob for me.  I was also told to use Emu Oil.  And a friend of mine who just finished rads gave me her left over samples of Xclair cream.  She said it worked great.  But just make sure you tell your Rads Onc what you are using beforehand.

redninrah

Hi- id love to join this forum. I just finished chemo, Will be having a stimulation in a few weeks. Then 1st rad is jan 4th. Im nervous. We are doing rads because of my age (36) and also the tumour was about a cm from chest wall, and also just in case of any lost cells.

I am hoping my skin doesnt go bad (or if i can get lots of advice to keep it in good shape) as im having DIEP in Sep (if my skin is ok).

SO im getting some EMU oil today Is anyone putting any stuff on right now. Ive had a masectomy already so, any advice? Yes lots of water to stay hydrated...........

Im so nervous!!

redninrah

By the way someone mentioned herceptin and Radiation, i have a port and will continue every 3 weeks until next sep. it doesnt affect it.

jo1955

tammyg - I ended up with 3 tattoos. One on each of my sides and in the middle of my breast line just below the bra line.  These were used to line me up with fixed lasers on the wall and ceiling.  They did additional marks with a sharpie each day and I look like a coloring book.  Those are almost gone since I am doing boosts now.  My lump scar is on the bottom side of my breast and I now have a "bulls eye"  Will finish rads tomorrow.

Nancy91355 - Here is a kitty for you.

 

Sherryc

Wow this board is active, how exciting.  I am like Jo with my tatoos.  Had three they were not painful.  It is 10:40 and I have not heard from the rad clinic so that is a good sign that I am on for today.  They did mark me with sharpies on Tuesday and I am sure will get more marks today. I used my xclair cream this morning so will have to see how it works.  Welcome to ebann, michelekb, packjen, lexyloohoo,tammyg,redninrah.  Glad you all have joined us here.

starling

Yikes! I'm with you Sherryc - This thread has really gotten busy! So glad to see so many of my November sisters here too!

Today I got for number 4! I got 3 tatoos too. Didn't hurt at all. I can't even find them they are so tiny. I don't feel any skin issues so far, just hoping if I keep using my cream it will stay ok.

Hugs to all! Love the ktty pix Jo!

jo1955

Sherryc - I am keeping my fingers crossed.  If your facility is like mine, plan on getting remarked everyday.  Thank goodness it is not swimsuit weather.  They would be hard to hide.

Glad to see this thread busy.  Sorry for the circumstances but we are good for each other.

starling - How many rads are you getting?  You may have said before - don't remember seeing it.  I chalk it up to rad brain. 

michelekb

I have an appointment on Monday at 12:20pm to have my first radiation treatment. I have a pit in my stomach ever since they called this morning. It is nice to hear from others with TE that had no problems with radiation.

I have heard good things about Miaderm and emu oil for radiation skin. I ordered some Miaderm and am getting some emu oil. I don't know which one I should use or can I use both. My RO is no help. I am going to use something on my skin. I am not just going to wait for a problem to develop.

 lexyloohoo,

I am also on herceptin every three weeks. you can continue while getting radiation. My PS said he will wait at least six months after radiation before exchanging TE for implants.

jo1955

michelekb - At first, rads can be overwhelming.  Lots of stuff going on all at once with lots of people around.  After the first couple of treatments, you will settle into a routine and things will go well.  Skin care should be your first priority.

Sit back, take a deep breath and relax.  You will do great.  Let us know how your first appt goes.  

jo1955

LADIES - I'M FLYING OFF TO #29. ONE MORE LEFT

redninrah

i bought some emu oil- i can not believe how expensive it was!

Im using going to get some BIOTIN 5000 mg to help my hair grow.............is this too strong?

MrsNice

Despite the expense, I can vouch for Emu Oil's effectiveness.  My son (blonde, blue-eyed) was very badly sunburned on his entire back a few years ago, resulting in huge blisters and so much pain that he missed a week of school - could not wear a shirt and laid around on his tummy for several days.  The blisters would fill to the point of bursting on their own.  I feared skin cancer right away.  I heard about Emu Oil on a radio commercial so I went and got some.  I had to dilute it and spray it on because he couldn't even stand to have me touch him.  Once the blisters subsided, he healed up just fine without any scars, just eleventy billion freckles.  I have a friend who suffers from severe dry skin and excema, and she uses it in addition to her prescription creams.  I think it's worth the money in severe situations.  My RadOnc told me it was okay if I want to use it, just to be sure there is nothing on my skin before each rad session.  She also gave me an rx for something but I haven't filled it yet and can't remember what it's for.

FireKracker

hello ladies

its time for me to join the Dec.Rads. I joined the Nov.rads but family issues came up and the tx were put off. Now i have an appt. with Rad.Onc. on the 7th. I am supposed to do every day for 6 wks.I hope my body is stron enuf.I hate this bc.

please sign me up.Good luck everyone.

hugggggggggggggggggs

K

DebbieLynn

 Hey ladies hope everyone has minimal side effects . I had Boost # 3 today, I will be finished on Wed. next week . Please keep your skin hydrated with what ever your RO recommends . I was pink after my first treatment and did not have bad side effects until last week . I started the aquaphor late in the first week, applied it only at night because it is so greasy.  Durning the day I used fresh aloe, ( I buy it at the vegetable store, I saw it at stop& shop last night in the veggie section). About three weeks in I needed hydrocortisone for the itch , On Tuesday I had the RO write a rx for silvadene cream . Whatever you do don't apply anything four hours before . I cant wear a bra at all now with out a telfa pad under my boobie.

Jo1955 -this ones for you. Thanks for the sparkle it helped.