APRIL Rads Anyone?

malyssajon

Bette, beautiful wedding pictures!

Jane during your ctsim did they tell you were getting the bolus? I've heard of it I just never knew what it was.  

I start my rads on April 14th, I'm getting 25 trts and I had a mast & chemo so it is interesting how they figure out everyone's dosage. My rad onc said that they do the extra boosts if during surgery they didn't get as clear margins as needed.

Linda

Anonymous

What is a bolus? I've read all the posts and can't figure it out.

I had a mast and chemo, so they will be radiating the chest wall. I have one tattoo between my breasts, one on my upper abdomen and one on each side. Simulation next Tuesday.

Bette 

BrandonMom

Bette, here's a link to the def of bolus http://en.wikipedia.org/wiki/Bolus_(radiation_therapy))  Essentially, it is something put on the skin to fool the rad beam into delivering radiation to the skin.  Normally, rads just pass through the skin. 

Linda, my guess is that you will get bolus treatments since you had a large tumor like me,

marthamm

Hello All -

 So I'm starting Rads tomorrow and will be getting a whopping 38 rounds.  Yikes! I'm ready to get this phase of treatment started and done.  I'm also taking a low dose Chemo pill form to "help" the radiation.  I'm a little worried about how my skin will hang in but I guess I'll find out.  Thank you all for sharing how the rads are going - it really helps to read everything.

kjbell

Bette-your pics are lovely. It looks like you had a fantastic day. I had #8 today, and I am now a little pink. I too get a little numb feeling in my fingertips. The middle of my tongue has a metal taste. I don't know if these are after effects of the chemo or from the rads.

bethaib

Hi. Is it too late to join the April rads group? 

Though I must say I really wish I were not a part of this group nor any others on this site, but I am...so that's life right now.

I started with my appt Monday by getting marked up and getting two tatoos..man did they hurt! I bled for a while and they were worried the ink would bleed out and they would have to re-do them. So they put a couple adhesive things on them and asked me to come back on Tues. I got marked up again...just when I finally got all the marker off lol  and they did some more measurements. I can't believe all the measurements and adjustment they do. I have never been so uncomfortable as I was yesterday having to lie still for so long. My arm and my finges got numb and  I was so cold afterwards. And I got another tatoo!  She said she was going to stick me and she did, but then she did it again. I told her she lied to me! lol  Then I get a call today and they asked me to come back yet again. I was really looking forward to that after how long yesterday was and how much I just wanted to move.  They said it would make Mon go much smoother.  I start with my first treatment Monday....for 6 weeks. So I guess I qualify for the May group too!

I was already given three different creams to try and was told two could be purchased at the store..Aqua something...and Two Cows maybe? The stuff is upstairs, husband asleep, and I just don't remember. And I got a sample of a prescription cream binafina maybe? I am horrible with names. A whole new language when you join the bc group. I was told to use the creams prior to my first rad and to continue using whichever one I liked till a month after. I didn't like the cows one much...weird smell...so tomorrow I'll try something else.

The radiation is a little scary...well ok...more than a little to be honest, but I am more afraid of what could happen if I didn't do it. So I am about to start on my journey, although it is not as extensive as many I am reading about, scary for me just the same. I still will have a breast that will be forever changed, the forever reminders-tatoos, and radiated skin.  Have no idea what I will look like when I am all done.

I usually am spared taking a shower with my husband around as he showers before me, but he was running late today, and where I would have normally jumped in as soon as he got out, I found myself waiting till he left and went downstairs so he didn't see me. My husband hasn't seen me naked since my diagnosis.

I hurt my back almost a year ago pretty bad and we were just starting to get intimate again (back is still not right) and now this. I think ahead to when this is over or at least fast forward somewhat to the future and can't imagine how I will feel when we finally get intimate again with how I will look then. I feel so grateful that I at least have some of me left, but when I look in the mirror I can't help but compare to what I don't look like anymore. It is such a hard thing to wrap your mind around.

And to top it off my menstrual cycle got so screwed up after the surgery last month, I ended up getting horrible bleeding and clots and had an endrometial biopsy to make sure nothing was going on. That all came back negative thank goodness. I guess to look at the bright side for that I will have a baseline to use for keeping track once I start the tamoxifin  after the rads. I chose to wait as I didn't think I could handle doing both right now. Figured I am so stressed out that one thing at a time made sense to me.

 Sorry for the long post...haven't had any close friends since I divorced my ex back in 2001 and just needed to vent someplace I guess. Thanks for listening....

bethaib

Ok here are the right names of the creams lol   Aquaphor, Utterly Smooth (that's the one with the "weird" smell, and Biafine (I at least was close on that one!)

Lainey64

Good morning gals. I took yesterday afternoon off work before I had to go to my rad appt.  I just need a "mental health" day - or half day as it was!  It's was gorgeous outside and staying indoors at my desk was driving me crazy.  I went home and got my dog and headed to the park.  I took my ballcap off and let my bald head soak up the sunshine.  Boy that felt good!!

After 8 treatments I still am not red.  I am feeling a little sore in the area though.  I am continuing to work out at 'Curves' and am going to try and do so til the end of rads. 

The only cream my rad onc wants me to use is Aloe Vera Gel.  He said that is what they like.  I can also use Aquafor if I want but he didn't seem to think that would be better than the gel.  I am bathing with Dove body soap in that area.

Bethaib - Welcome to our group!  Yikes, sorry to hear about the trouble you had with your tattoos.  Those little suckers do hurt though, don't they! 

Bette - I love your wedding pics.  Thanks for sharing with us!  You look very happy.  Your hair looks like it's growing in quite a bit.  How far out from chemo are you?  I wish mine was as long as yours!

Have a great day everyone,

Love, Elaine

Anonymous

Bethaib, I read your post and sent you a private message.

Elaine, I wore my wig for the wedding as my own hair was not long enough to hold the comb for my veil. I would say mine is as long now as a short mens cut. My husband's hair is longer than mine LOL. I am four months out from chemo. It took two months before I had visible hair, and longer for lashes and eyebrows.

I am making plans to return to college this summer to complete the degree that I began before cancer interrupted. I have an appointment with my advisor at 2 PM this afternoon! This is so exciting! Summer session begins a few weeks after I finish rads, so hopefully I will be starting to feel up to the challenge.

When I go to the pharmacy tomorrow I will pick up some Aloe Vera Gel. And Dove body soap.

I will work out after I get back from school this afternoon. I too, am going to try and continue that through rads.

Bette 

susan13

Bette-Great pics, congrats, looks like you all had a great time.  And you are well on your way to a full head of hair!!  What chemo were you on?  I  finished Taxotere 4 wks ago and I can still pull out some clumps:-(

Well ladies, I am not too happy right now.   My onc. said my tumor marker blood test has been slowly going up, during treatment, last test was taken 2 weeks out of treatment, so he wants me to go for restaging to make sure nothing else is going on in my body.  Just great huh?!?  So next week I have ct scans, pet scan, and bone scan for my pleasure, on top of my radiation mapping.  Ugg. Just seems to never end. 

Lainey64

Susan, this really sucks!  Were you aware of this during TX or did he just spring it all on you?  In either case, I'm really sorry. 

BrandonMom

Susan,  my onc never talks about the blood test for tumor markers, so I can't speak to it personally, but I've heard that it isn't unusual for it to go up during treatment, something about the effect of chemo, but again, I really don't know, just repeat somethng I heard along the way.  My onc did say that we wouldn't do another PET scan until awhile after rads because if we didn't it would just give false positives.  The cells growing so much, would really just be the body repairing itself from rads.

EleanorJ

Susan - Sorry you're going through all this right now, but... I asked my onc about the tumor marker test and he says he won't do it. He says "it's a great test, but it's not it's time yet" too many false positive or negative, you can't trust it, he says. Try not to stress too much, I know easier said than done.

busymomof5

Hi. Bethaib I am sorry that you had such a hard time with the planning session and tatoos. I just had mine a couple of hours ago and it went much smoother than I had anticipated. The tatoos hurt,I have 6, but they really did feel like a little "pinch". I had a fingernail removed last Friday, a side effect of Taxol. that really hurt when the local block wore off and it is still sore. I have a test run on the 17th and will start radiation on the 20th. So we will be starting about the same time. Good luck to both of us! Thanks everyone for all of the info. I hope that we all have few complications from this....and they onto a summer without cancer treatment!

Ann 

Anonymous

Susan, I was on dose dense Adriamycin and Cytoxan, followed by two courses of Taxol, then switched to Taxotere every 3 weeks because of side effects. (I kept on finding myself hospitalized in isolation due to low blood counts) My hair fell out in clumps two weeks after I started the AC.

It has taken a long time to grow back. My last chemo was Dec. 17 2009.

Bette 

bethaib

Hi busymom

Six?  And I complained about three? Kudos to you! Sorry to hear about the fingernail side effect, that must really be painful.

We'll have to compare notes as we progress during the radiation. I agree, hopefully we'll all have minimal complications.

I have enjoyed reading all the posts...it feels a bit like a new family....thanks for letting me join in the support.

bethaib

Oh...btw...

 Thought I would share about my picture....last April we (my husband, his two boys, and my daughter and son) all went to Hawaii. Last family trip before the boys (twins) went off to freshman year of college.

 The picture is one of many we took of the sunrise coming up over the mountain, Haleakala National Park, 10,000 ft. It was one of the most beautiful things I have ever seen. Haleakala means house of the sun.

If that does not inspire hope, I don't know what does....

Jane_M

Today was my first full day of work in 7 weeks.  I was surprised that I was actuall tired this afternoon.

Beth - I know what you mean about not wanting to be seen.  I had a radical mastectomy on the left side in September.  In October, I got cellulitis of the chest wall which needed an incision and drainage.  I had to pack my wound with iodophor dressing for over a month.  Needless to say, I felt much less than appealing.  And my husband is a "boob man."  What I have found that makes me comfotable is to wear a "teddy" type top.  I have a semi-sheer short black top that camoflages my imperfections enough to make me comfortable.  

I was told to use Aquaphor, Aloe or Corn starch in the beginning.  As things progressed, my Dr. gave me biafine.  My skin was great until day 24.  It seems like all heck broke lose on day 25.  I have 2nd and 3rd degree burns, places where the skin is actually black like it had been scorched. I am also on an antibiotic. I know they say that the way a person reacts to the radiation is based on how they took care of their skin, but I have never had a sunburn under my pit or in the crease under my breast and that is where my skin is the worst.   I think where my problem arose is from having the cellulitis of my chest wall in October and then also having cellulitis in my right leg in January following a fall.  My OT told me that this predisposes me to getting cellulitis in the future.

Lainey64

Good morning everyone.  Last night I noticed redness and that sunburn look on my breast.  It was a little tender so I put more aloe vera gel all over it.  This morning it looks ok but feels a little sore.  Today will be the end of the 2nd week for me.  I was talking to my rads tech yesterday and she said that a positive attitude will take you a long way with this.  She said she has people coming in with really negative attitudes and they are dragging every day.  I was telling her that I'm going to try and continue to exercise through this and she said that is best thing to do if you can handle it.

Busymom & Bethaib, I got 4 tattoos.  Funny how we all differ.  Luckily I have not lost any finger or toenails after Taxol.  I still have one numb toe on my right foot but the nail is hanging on. 

Jane, of course you're tired!  You're having to adjust to a new schedule.  Sorry to hear about the severity of your burns.  I've never had sunburn under my pit either, so that is a little scary.  I hope the antibiotics will help you.

Have a great day everyone and a rads FREE Happy Easter weekend!  TGIF!

busymomof5

Bethaib,

I have 5 children, not 6. Six would definately put me over the edge...ha! My children are ages 20, two 17 year olds and two 14 year olds. Yes, I have 2 sets of twins so we have more in common than the start of radiation. My oldest daughter is away at college. She is the most help to me so I really miss her. Losing the fingernail was tough but I do feel better the further from chemo that I get. I played golf today with a friend. My finger hurt somewhat but it was soooo great to be out. Anything that I do that I enjoyed prior to my diagnosis really makes me feel great. I really hope that I can continue golf and other exercise as I go through radiation. I need it to stay up.

Have a Happy Easter! Ann 

fleecewood

One week down- and 5 to go!  It went rather fast. All is well so far.

Bethaib- You are at the right place and with a great group of women here for support and life will get better.  This too shall pass and you will be all the stronger for it.  We are building our character. I think you may be underestimating your man.  Although they can't exactly put themselves in our position and understand what we are going thru- I am sure he has an immense amount of respect for you and appreciates the fortitude you have to face this challenge head on. And any true man will still love your body with its battle scars; because it would be much worse for him to lose you. And you know he doesn't want that.        I've been doing alot of reading and research and a book on traditional chinese medicine for bc- said when you are under the machine to think of the radiation not as from the sun but from the moon, because it is weaker, and pretend that there is a layer of water over you to shield you from it.  Take deep breaths and try to relax.

I just give it all to God and ask him for a hedge of protection around me.  You'll find out what works for you.

Say- originially I was told no deoderant or shaving- but now they said it was possible for the crystal spray- anyone else heard that? 

Happy Easter all. Susan

fleecewood

Oh I forgot to add-if anyone wants to see a funny video-- check this out. My son sent it to me.  We have a small hobby farm and raise Merino sheep and australian shepherds - so I can relate- but its worth the wait- most will get a good laugh.

http://www.wimp.com/sheeplight/

mimi07

Can I join you guys?  I had a left mastectomy, 4 rounds of TC and I started radiation this week.  I had 4 treatments and so far so good.  I am getting electrons which doesn't go deep.  I was told I was a good candidate because I am so slender.  Is anybody else getting electrons?

I was also feeling a bit down, because my onc wants to add another field, the clavical area.  I have a big scar on my left chest, a small scar under my collar bone for the port, and now radiation scar that covers my whole left chest area up to the neck area where you can see!

Bethaib:  The surise picture is beautiful!  I dreaded taking a shower after surgery.  I still lock the door when I take a shower.  I don't want my husband to see me.  But, I'm thinking this shall pass too, as I don't dread taking a shower anymore.  I still don't like looking at myself, but I don't dread it now.

fleecewood:  Thank you for the bit about the radiation from the moon and water shielding.  That makes me feel better.  I'm wondering if I kept putting lotion on the skin will hold up better.

Jane M:  I'm sorry to hear about your burns.  Hope they are healing and you're feeling better.

bethaib

Busymom   I was talking about the 6 tatoos, not kids : )    I only have two kids myself..daughter will be 17 next month and my son is 13...that was enough for me. Having five must be a challenge! Although there are six of us when we are all together (husband's kids and mine) they were only here every other weekend and for some vacations so we didn't have them around much. It is usually just the four of us...and when the kids are at their dad's, its pretty quiet around here. I dread my daughter going off to college after next year. I think I will have a hard time with that. She's a great kid and I think we will be good friendsas time goes on. My son is good kid too. He won't know what to do without his sister around when that finally happens. They have a good relationship between them.

Jane  So sorry to hear about the burns, I hope they heal quickly. My doctor said I could use any of the three creams, Aquaphor/Udderly Smooth/Biafine based on which one I liked better. I was also told I could use them all if I wanted, they said some people liked to use the Aquaphor at night and another brand during the day. She did say the Biafine was a precription cream and after 20 minutes of  being switched around at the insurance company I still don't know how much it will cost with my insurance...I finally had to get back in to work. No one at work besides my boss the HR Mgr knows what is going on with me, so I try to keep my conversations away from the workplace. I have never really taken care of my skin so I have to wonder what that will mean with rads for me? Time will tell I guess.

As Jane said my husband is also a "boob" man, so I imagine my changes will have to enter into what he gets his head around about all this too. I haven't avoided my husband on purpose, he just gets up/leave for work so much earlier than I do.  I have already changed into pjs to get more comfy before going to bed and we seldom go to bed at the same time. Because of my back I have been physically unable to do all the things we used to do in bed for so long now, that we have not yet gotten back into a "normal" sex relationship. We had just started to at least have sex a couple times just before all this happenned. So once again all that is on hold...the wacked out mentrual cycle has certainly contributed. Unfortunately the intimacy (you know that stuff we women like instead of sex lol) has seemed to have taken a back road over the past year and I feel so disconnected from him. I guess I don't really know what he is thinking about everything as we haven't really shared between us in quite some time like we used to.

It's a nice day out there today...still a little cool, but sunny..so think I will go read a little in the sunroom and soak up some warmth as I will have to avoid it soon I seem to recall...

 Hope everyone enjoys their Easter...those of you who celebrate it anyway.....I miss the egg hunts when the kids were small.....

bethaib

Welcome mimi...I haven't been here long, but the women here seem to be wonderful caring people....

My doctor didn't even discuss electrons...not sure what they are....

BonnieK

Welcome Mimi.  I joined this great group recently when I found out that my rads will start the last week of this month.  Aside from being told that I'll have 33 treatments, I don't know anything beyond what I I read here, which is a lot of really good information. 

I loved the post about thinking of the moon and water during radiation and plan to try using those thoughts and images.  This week my sciatica flared up again, and between that and neuropathy in my feet and ankles, I have no idea how I will be able to hold still for the planning session on April 23rd.  Time will tell...

~Bonnie

eadsla

Happy Easter weekend everyone.  I completed my third treatment yesterday and nothing to report in terms of reactions,,,but I've only had three.  But can I ask you all how you are all doing emotionally?  I think I have some form of battle fatigue.  I had 4tx of TC, the last one being on March 6, so I'm definitely on the far end of the chemo se curve.  And while rads are going to be easier to hadle than chemo(what wouldn't be?), mentally for the past week or two, I have been all over the map with the result being that I'm just emotionally exhausted.

During chemo, I was able to "keep it together" and was able to find something about the whole experience to laugh about.  The only times I got teary-eyed was when I thought about some of the nice things that people did for me.  That hasn't been the case lately.  Maybe it's the chemopause that I got thrown into, maybe it's the thought of having to have a tx everyday that forces me to get out of the house rather than the one infusion and then home to recover for 21 days.  Maybe it's because I'm single and I'm finding it hard to deal with all of this without having someone "in the room."  I don't know.  I suppose I was so focused on getting through the chemo, that now that it's over, and the easier part of rads is left...well, I'm just sort of spent.  I've always been able to talk myself out of bad moods, but it's been tough lately.  Could this be from the chemopause?  Anyone else here get thrown into premature menopause?  I'm 43 so I'm at an age where it could be permanent, but my onc doesn't think it will be...but still...is this what menopause does to you?

It's just frustrating to feel like I'm physically improving from the chemo, only to be in such an emotional crapper during rads.

 Catherine

fleecewood

oh my gosh ladies- i am so embarrased- i mispelled the site for the sheep with the led lights. its wimp.com/sheeplight = please forgive me. i want to curl up in a ball and hide...put my head in a paperbag--  the real site is great-

Catherine- I've never had to do the chemo- but I had my first major meltdown on the way home from the simulation for rads. I'm 56 and menopause was really no big deal- just occassional hot flashes and waking up in the middle of the night. But my heart is with you-bc just turns your life upside down.  And I know I  wonder if and when  life can go back to normal. Its just one of those jogs in the road, but it will get better, because it has an end point. 

eadsla

fleecewood--I feel ya on the meltdown.  I'm sorry you had to have it, but I am so very empathetic.  I'm curious, when you went through menopause, how long did it last?  Was it months?  My hot flashes are more than occaisional, more like every hour, especially at night.  The thought of living with them for months...crimony.  Men have NO idea.

Coincidentally enough, in the rads waiting area, I was reading an article in one of the Cancer mags about crying and how it's one way we release stress toxins through our tear glands.  So our meltdowns show us how much stress we really are under, but maybe repress a bit until physically we have to let it out.

I'm watching The Ten Commandments on ABC.  Haven't seen it since I was a kid despite it being broadcast every year.  Anne Baxter...wow...

fleecewood

Eadsla-

It lasted about 6 months max for the worst I'd say- and the worst flashes were at night. I did get pudgier around my middle too.  I had just found this great exercise tape where I was beginning to find my waist again- when I got my mammogram results. So I am back on it again.  Its called t-tapp and I highly recommend it.  (t-tapp.com) Theresa Tapp  who is the teacher, had a mom who died of cancer when she was small.  Its a rehabilitation routine that works with your lymph system - and its used by a few hospitals.  A friend of mine who is a massage therapist told me about it. I had been making zero progress for a year on other things, and then started this and lost a pant size in about 2 months. It is really helping with my arm too, especially to alleviate the morning  "blocky" feeling I wake up with from the lymph node removal.