July 2009 rads group

Leah_S

nwood, I know what you mean about the eyebrows and eyelashes. I was DEVASTATED when they fell out. The funny thing is, they were the first to come back. I finished chemo April 30, and still have only a very thin layer of fuzz on my head.

The good news is, I still don't have to shave my legs. There has to be SOMETHING good about this.

Leah

dkhancock1948

Good evening to all:  I had A/C 4x and Taxol 4x.  I lost my hair  about the 3rd week after my 1st chemo.  I lost my eyelashes after the 2nd taxol.  I was completely done with my chemo treatments and a month later I lost my eyebrows, but then my eyebrows were back the next week - not like they are now, but back.  I think that bothered me the most.  Something else we had to deal with. I had a complete hysterectomy in 1990.  At that time, all my body hair basically disappeared.  I only had to shave my legs and underarms about once every two months.  That was great.  I don't know what chemo does to your body completely, but I now have hair on my legs that I have to shave more frequently that I have in years, plus I feel like the starting of a bearded lady.  I now have facial hair on my cheeks.  I had to pluck chin hair for years, but this is more than I ever dreamed of having.

I can't imagine having that machine to stop working when you are laying there.  You seem to handle it better than I would.  I guess there is nothing you can do.  I will be glad when they are over.  Today was my 11th out of 33.

Eileen:  My shoulders and back were normally tight before all of this.  Now they are really tight.  I did go for half an hour thereputic massage last week and today.  He is working on the muscles to get them to losen up.  My neck is extremely tight. He said there is no way he could have his arms up in the position that we have to have and then to keep your head turned the whole time.  My sternum hurts, too.  The tech said it is probably from the muscles stretching.  And they told me when I had my mastectomy that since they didn't "cut" the muscles, I shouldn't have much trouble.  (They had to get my lymph nodes from somewhere). Now I know why they give you exercises for your shoulders and neck after the surgery.  We will all get through this.  It seems like a very long time. 

Debbie 

nwood450

Hi Leah ... thanks for the reply.  I, too, am enjoying the "luxury" of not having to shave my legs.  That is definitely a plus (along with no armpit hair)!   Encouraging to know that eyebrows grow back quickly.  The peach fuzz on the head is another issue!  =  )

ibjennifer125

Losing the eyebrows and lashes was hard. I missed them so much, but after chemo was done in mid April they came back pretty fast. My hair looks like one of those pixie cuts or maybe Annie Lennox and is coming back in darker. I wear my ballcap most of the time now as I'm not sensitive about my head now, but when we go out to movie/dinner etc or elsewhere when I wear makeup I still wear my wig.  My wig and my bra with a velcro insert in the right side so I can look normal. It's hard not to have moments of anger over what this disease has done to mephysically.  I can honestly say though, with all the people I've met on this forum...at the cancer center I go to....my chemo nurses and rad techs and my team of Doctors my life has been also been enriched by this disease.

TwillNW

Hi all - I think it's time for me to chime in.  I had rad #9 of 28 planned full breast rads today - I don't know yet about boosts.  In reading some of your posts, I am realizing how lucky I have been with my treatment center - knock on wood, but it seems to run like clockwork, and I am in and out in 15-20 minutes unless it is doctor or nurse day.  The techs offer a blanket every day and have forms for the arm that has to be raised plus the resting arm.  I do drive for about 40 minutes to get there but based on what I'm reading about other places, I'm thinking it's worth the drive!

I am working through rads, I go to work as normal in the morning and then leave about 12:45 for my 1:45 appointment.  That gets me back home before peak afternoon traffic.  I'm using sick time for the hours I'm away from work in the afternoon, but since I'm usually getting home about an hour earlier than I would normally get off work, I feel like I have gained an hour in my day. 

So far, I am not seeing much skin reaction though I am feeling some tightness/fullness in the armpit and on my side.  Also feeling a little bit of reflux but I think that's from the med I started for the bisphosphonates trial on Tuesday.      

We're past "hump day"  for this week - only two days until the week-end. 

charmd

Hi Leah and Nancy,

My last chemo was May 21st, and I'm just staring to get stubble on my head (barely) but no eyelashes or eyebrows.  For me the worst part of hair loss was something no one told me about -- I kept getting these horribly drippy to runny nose.  Everywhere I went I had to have a tissue in my hand.  I said something to my Onc and he pointed out that I had also lost my nose hair.  I know TMI -- but then it made sense.  I thought I was just suffering through the worst allergies on top of everything else.

Helen and Leah,  Wishing you better and quicker treatments to come.  I hate it when I feel powerless of people, places and things.  Your experiences would have made me want to pull my hair out, if I still had any.

Wishing y'all a good day.

Charmaine 

Snappygoddess

Hi all!

I started my rads last month.. was supposed to be done by the end of this month but have had some delays. First they had to redo my sim and I will be on a slant board for the rest of my treatments. Finished round #12 Tuesday.. they called yesterday and said the machine was down so no rads.. and told me to call today before coming to make sure it's back up.

I have a wonderful cancer treatment center.. it's about 4 mins from my house which is really awesome and everyone has been so nice and helpful. When I get rads, they ask me if I want a blanket.. and put pillows under my arms to give them support and they don't hurt near as bad.

I was told I could use any body wash I desired, deoderant or powder... as long as I did not put them on 2 hrs prior to rad treatment. They gave me som Aquafour and told me I could use Aloe Vera as long as it was 100%......I haven't been able to find pure aloe vera gel anywhere. I am presently using Aloe-Esta.. a cream that I slather on after each treatment and then at night, after I bathe. Also.. my naturopath gave me a remedy to use.....it's called calendula tea therapy....I bought the calendula flowers from health food store.. they were very cheap....you boil some water in a pan.. add handful of flowers and cover tightly and let seep for 30 mins....strain out flowers...use an old terrycloth towel(the tea will stain) get it wet but not dripping.. place on entire radiated area for 10 mins twice a day. Place unused tea in glass container in fridge... warm just enough to use next time. Tea should be replaced every 3 days.  She says this tea therapy has great results.. will aid in the burning, less peeling and less irratation. So I am trying it to see.

So far, I haven't had any adverse side effects.. but I am not even quite half way done with my 33 rounds.. so we shall see!! 

I am sorry to hear of some of you not being treated right....I am so fortunate to have great doctors and techs. Best of luck to you all.. wherever you are in your treatments.

If I keep having delays, I am going to start thinking maybe I shouldnt have radiation at all!!

~Belinda~

jdeking

Leah  - so sorry about your experience! I can commiserate since mine was similar, minus the machine breaking down mid-way through. Hope today is much better for you, but it sounds like the waiting may last for awhile.

My 2nd was much better than the 1st, was in and out in 15 min or so.

Charmaine - I had the same problem with lack of nose hairs! I work in a lab and often could not wipe my nose so was always runny. My coworkers were always teasing me. I am almost 6 weeks post chemo and I just realized as I read your post that my nose hasn't been drippy for the last few days !!!! Woohoo - maybe the hair is returning. Still waiting for head, legs, underarms.

 Debbie - is massage helping? I was thinking of trying that, or maybe accupuncture.

I forget who was having nausea/heartburn - I have been feeling that as well, but not sure if it is from rads or from taking Colace?? I stopped the Colace so we'll see if that clears it up.

Have a great day ladies!

LoriL

I finished my 3rd of 30 treatments yesterday. The cancer center is only 5 blocks from my work, so that is nice! They are REALLY efficient with their time, too. I walk up there over my noon hour, get zapped, walk back. The whole round trip takes only 1/2 hour! Woohoo!

All is well so far EXCEPT for one thing..... I noticed a few weeks ago that there was an enlarged lymph node (about the size of a marble) in my underarm. I attributed it to my recent bilat mast 6 weeks ago, and that is what my Oncologist thinks, too. BUT he is sending me to my surgeon today for a fine needle biopsy. HELP! Now I'm really worried! My Sentinel nodes (3 of them) were negative. What are the chances that this is cancer? Did anybody else have an enlarged lymph node after surgery that was normal???

nwood450

Hi All,

I had a very disheartening visit at radiation yesterday.  I've been experiencing nausea and heartburn and when I broached the subject with the rads nurse she said, "That's impossible.  You are probably coming down with something or it's just anxiety."  Wow ... way to be empathetic.  I know what and how I am feeling. I had all of my surgeries and chemo in Boston at the Dana Farber and they were always very professional and compassionate.  I chose to do the rads closer to home since Boston is an hour and a half drive (each way) from my home.  A little disappointed with my experience so far.  I did call my medical onc in Boston.  She was much more sympathetic and told me that the mucous membranes of my stomach and esophagus are still sensiitive from the chemo and to try Prilosec or Zantac. 

Charmaine - I had a runny nose too!  Never attributed it to lack of nose hair!  It all makes sense now!  It is comforting to have all of your perspectives.  This can be such a lonely experience!

Nancy

donnamariem

I just finished my 3rd session.  A little disappointed ... they said it would be pretty quick every day, but I have had to wait 30 - 45 minutes.  Oh well.  I don't know what's wrong with me, but since I got back to work, I just want to go somewhere and cry.  If one more person asks me how I am I may snap.

Leah_S

nwood, on other threads I have seen a lot of women say they had nausea with the rads. I don't know if they are post-chemo or not, but it is a possible side effect. From what I've heard, rad oncs and rad nurses need to pass a course where they learn a special mantra. "That's not a side effect iof rads. That's not a side effect of rads." You get the picture. Until not so many years ago, they didn't even acknowledge that fatigue was a side effect of rads.

Had my second trestment today. I watied for 2 1/2 hours. This is driving me nuts! The treatment itself went smoothly, and fortunately the techs I had today were a lot nicer. One of them was surprised that my arm was sore at the end of thetreatment since it was shorter today. I told her it was a result of the surgery, and it seemed she'd never thought of that. Talk about specializing ONLY in what you do!

I brought along a pair of knee socks with the toes cut open and used them as sleeves to keep my arms warm. The tech thought it was a great idea. I'm thinking of donating a few pairs!

By the way, I had the same drippy nose due to no hair, but everyone reacts to things differently. It cracks me up.

Leah

carollynn79

First Rads today in and out in 40 minutes the Techs and my nurse wer very nice, went to see the Medical Onc too, he looked at a lump on the right side of my throat and orderd a ultra sound on the lymph node and thyroid, hopefully nothing but we will see.  I will start the Tamox as soon as it comes from the mail order pharmacy.  One down and 32 to go!

dkhancock1948

I am fortunate, too.  I have great techs.  I also have a form to rest my arms in.  I can't imagine what a strain it is for those who have to hold onto a bar or something while doing this.  I have a hard enough time bringing my arms back down because of the soreness through my shoulders.  I see where some are having chemo and rads at the same time.  How does that work?!

JDEKING:  Yes, the massage is helping.  I can turn my head much farther now, which really helps when driving.  My shoulders don't feel like someone is trying to drive a knife through them or pulling my shoulders blades together.  If I can, I am going to try to get one at least every other week after he gets me to where I can do that.  He says his other clients call him Dr. Pain.  I believe him.  He finds the spots that are really sore and works with those to relax them. 

What I love when you tell someone in the doctor's office whether it is the doctor, nurse or tech or maybe a family member or friend of problems you are having, you know you are having and that you didn't have it before the rads is for them to say, radiation shouldn't do that to you.  No it is not from the radiation.  I keep thinking, how do they know!  They are not in this position in their life right now where your body has been subjected to so much.  How do they know that it is not our body saying I am really tired of this so I will let you know you have hurt me. Everyone is different.  Every treatment is different.  I haven't been able to sleep well since starting the rads.  Everyone tells me that it shouldn't be the rads, but guess what, it started when I started my rads.  Sometimes I just stop saying anything to them.  I don't think they know.  Leah said they should learn to say something different.  I agree with you.

I have been fortunate through all of this.  I was nausea free through my chemo.  I was able to work.  I was exhausted.  I am also alone, with my husband dying on Thanksgiving 3 years ago.  I am 60.  I do not have little children at home.  I didn't have to come home and fix meals, so I was able to do some things that maybe I couldn't have done if circumstances were different. 

Today I am a third of the way through - #11 out of 33. YEA! My skin is red, but I am allowed to put Aquafour on twice a day.  My rad doc says just not after 4 hours before rads.  I am looking for aloe vera, too.  They said I could use that, make sure it is 98% pure.  I was also okayed to use the Essential Oil of Lavendar.  I use that on the weekends. They said they also have other creams to use if I need them.

To all:  Have a good evening.  Only one more treatment this week and then we can rest up for next week.  Wish me luck making 9 dozen of deviled eggs.  My son is getting remarried this Saturday and he and his wife-to-be decided to do everything themselves.  I said at least let me help with something - maybe the deviled eggs.  My son finally said okay. 

Isn't is strange how every doctor is different.  You would think they would be on the same page.

dkhancock1948

Was there someone on this thread that found an enlarged lymph node after surgery was done and rads were done? There is this lady that posted this and has had no response.  She is really anxious.

LoriL wrote:

Hello ladies!

I had bilateral mast 5/28/09 with a negative Sentinel node biopsy at that time. About 2-3 weeks ago I noticed an enlarged lymph node (a little smaller than the size of a marble) but reasoned that it was from the recent surgery. I started rads 3 days ago since my margins were close, and mentioned the lymph node to my Radiation Oncologist today. He believes it is likely from the surgery, but wants it biopsied just to be on the safe side. Now I'm REALLY worried! 

My surgeon was certain that he had identified the correct Sentinel node, but I know that they are not 100% accurate. Has anyone out there had a negative Sentinel node biopsy but then found to have cancer in other nodes???

I was able to get in to see my surgeon tomorrow- I'm hoping he will do a needle biopsy right then in the office. I swear, this is almost worrying me more than I was before the initial cancer diagnosis! I have been breathing a sigh of relief as my Oncotype Dx was low and therefore chemo wasn't needed. But, now, my mind is just racing! Help! 

MBCR

Hi everyone! I've been away from the computer for a while. I finished my rads on 6/30. The week after I was done I felt as if the fatigue hit me like a ton of bricks, I was sleeping much later than normal & feeling tired upon awakening And I was dragging thru the day. Now I feel  a bit funny cognitively.Could these brain "farts"  be coming from rads or tamoxifen?

MsDebS

I had my sim yesterday.  The machines were down for a check of the power at the hospital and when they came back up the water pressure in the cooling mechanism wouldnt come up so they were behind so I came home with stickers all over my breast and not the rest of the tatooing.  I start Monday.  They moved some retired folks so that I could get in at 7:30 am  and be at work on time.

And what is it with men and the dressing gowns?  There were 3 in the waiting room with no pants on holding their gowns closed with their hands behind their backs so that their heinies didnt show.  I put one gown on open in the back and one over that opening in the front.....viola! complete coverage.  It was too funny. 

My hair is coming in and it is pure white and fuzzy....I look like a Chia head.  Lashes and brows are coming back too.  I was blonde by choice...Onco says I am too young for white hair...I should call it silver blonde....what a flirt.  Looks like it is going to be a long hot summer with the rads.  Hope yesterday was not a preview of what I am in for....hurry up and wait.

Deb

MsDebS

Debbie,

I got aloe at Wal-mart..Fruit of the Earth 100% no color/fragrance free.  Havent used it yet as I start on Monday, but that is the only place that I found it.

Deb

flyinggirl

Hi

I have just finished my 9th treatment and the beginning of this week, I have started to feel a little ligh headedness.  I spoke with the nurse, and like others have posted previously, was told this was not a side effect of radiation.  However, since I have done nothing differently with my life but take radiation, I doubt this can be correct.  Has anyone else experienced light headedness or the feeling that you are just a bit off center.

After reading the posts on the troubles others are having, I consider myself very fortunate.  The rad techs are just the best, kind and considerate and I usually get in and out in about 30 minutes.

I just can't believe that some the centers do not have forms to stablize the arms.  The cost of the forms is minimal and it would go along way to making people feel comfortable. 

Kathy

ibjennifer125

The nose drip..OMG I had it and complained all the time and come to think of it I know 3 other women getting chemo right now and they complain about that too. I knew it HAD to be a chemo thing but had no clue what until you shared this Charmd.. I learn so much from all the gals on here .Needless to say I identify with most too.

Happy for all you whose hair is coming back in...Mine is too ( last chemo mid April ) but it's darker and a lot of gray. I kept my medium brown hair highlighted, cut in a bob, so I probably had the gray. Only my hairdresser knew for sure!  Love having my eyebrows and lashed back....

9 rads down.....25 to go! 

nanabolini

flyinggirl.  Yes I've had lightheadenness.  I've had 7 rads.  Also, last night I was sick like I was getting the flu, really bad.  And I am soooo tired.  Today I'm some better but wonder and worry - if I'm this bad off how am I going to get throught this?

Has anyone else noticed how people tell you it's all fine, you're going to be ok, rah rah rah and it's not that bad etc. etc.?  Of course these are people who have never had radiation and really don't have a clue.  Easy for them to say.. I suppose they mean well but at times it really gets on my nerves.

nwood450

nanabolini ...  I, too, am sick of the cheer leaders.  Someone said to me the other day.  "You're done with chemo right?  Shouldn't you be feeling better?".  Ya right.  They just don't get it.  I've had 7 rad treatments and last night I was so tired could hardly put one foot in front of the other.  I never fully recovered from the chem and now I'm getting zapped with rads.  It's not a walk in the park.  Some days are better than others and you take those days as a gift and run with them.  Weekend is here so enjoy the respite from rads!!!

 Nancy

Rabbit_fan

Well I'm done with #7 so far and it has gotten a lot better.  I think I had a variety of weird factors after my first few treatments - I had an allergic reaction to the Tom's deodorant I bought, which I think really aggravated my underarm swelling, and at the same time I had my first period after starting Tamoxifen and I think that made it worse.  I haven't had bad mood swings with my period for years, and I think the Tamoxifen had to have something to do with it.  I was really worried having so many problems after only 2-3 treatments, but it's getting better for me. 

Debbie - I hope you have a great day Saturday for your son's re-marriage!

LoriL - I have my fingers crossed and hoping for good news with your biopsy.  Let us know how it turns out. 

hrf

I had my first 5 rads this week .... 20 more to go. So far I'm doing ok. Sorry to hear that many of you have already started feeling SEs. Unfortunately, this is my second time doing rads...  had bc on my other breast 4 years ago.....so far the experience is similar. I recall the last 2 weeks being more difficult. Good luck everyone. Enjoyyour weekend and the brief rest from rads.

Susantc

Does anyone here do yoga? If not, what other things are you doing for yourself? I was really tired last night and this morning after my first week. I dragged myself to yoga class and about half way through, my energy came back. I'm feeling much better now. Hopefully I can keep doing my classes. Five more weeks of this stuff. Hope you are all having a relaxing weekend. Good luck next week.

Becky613

I have had a couple of times that I had some lightheadness but thought it was from the heat.  We just retired and moved to Arkansas from New England.  Hard to know too if some fatigue in the afternoon is from rads or the heat.  Do many people have nausea?  Every week the nuses askes if I have any nausea/vomiting/fatigue.  Rad onc didn't mention nausea just mild fatigue if that.  I've only had 12 out of 35 treatments so have a ways to go.

 I feel fortunate with my center.  I have to drive about 50 minutes each way but I'm in and out quickly.  Rarely wait.  The techs are very nice but wish they were females.  They do have a form for my arm and the coolness of the room is a relief from the 90+ degree weather.  Only problem I've really had has been sweating the marks off my chest.  The initial ones lasted only 2 days and the ones around the tattoo sweat off daily.  They finally put a small clear bandage over the marks and so far they have stayed.

Becky613

I went to a yoga class on Monday and intended to go back Wed and Fri but didn't.  Other things came up but next week I'm making it a priority.  The time is tough because I have to leave shortly after class to travel to the center.  I felt great after and felt it was a better workout than the 2 other exercise classes I had tried. 

 I also walk about 3 miles 4-5 days a week since starting rads on June 23.  I also try to eat as healthy as possible. 

Susantc

Wow, Becky! You are an inspiration. I think part of why I was so tired yesterday was because my sister and I went for a long walk in the afternoon. It was a good tired though - the kind where you know you are going to go right to sleep and not think about all of this.

LoriL

Eileen45- Thanks- I'll keep you guys posted. Keeping my fingers crossed that it is enlarged just from surgery itself.

Susantc- I like yoga, but hadn't gone since my bilat mast as I wasn't sure how the Downward Facing Dog would go! :-)  But, I think I'm ready to get back into that. I'm a runner and cyclist, and so far I've been able to keep up with my usual routine of a 5-7 mile run or a 25-35 mile ride everyday. I didn't do chemo, though, so I came into the radiation with a lot more energy than a lot of you have. I sorta feel a bit guilty about that- like I got off easier than some of you dear folks. Bless you all!

I have been reading about how Calendula is so good for treating burns, and came across this great cream that I'm going to try. It's called California Baby Calendula Cream and comes in a 2 ounce jar. Saw it online and found it at my local Target in the baby section. Calendula is the first ingredient, aloe is the 3rd, and it doesn't have a lot of greasy fillers. I've been using Aloe Vera gel after each treatment and after showering, but am going to start using this cream at night as well. I don't have any skin issues yet, but I'm try to be proactive in preventing them! I'll let you know how it works. Has anybody else tried it?  

Leah_S

Well, my weird reaction is a slight shakiness/weakness in my legs. I get it about 5-10 minutes after treatment. Not sure how long it lasts since we then get in the car! However, I had it today without a treatment, so I don't know how this will be.

What a difference Friday was! Here in Israel, normal work week is Sunday to Thursday, with Friday a half day, so treatments are scheduled for Sunday-Thursday. If you have your first treatment late in the week, they like you to come in that first week on Friday (they only do them between 7-9 AM that day). I only waited about 15 minutes! The good thing about this is that if you miss a treatment one day (machine down, skin problems or something like that) then instead of te extra day being added on at the end of treatment, it's added on that week on Friday. I've been told they expect the pressure and long waits to ease off within a week to 10 days. I'll believe it when I see it.

I also have an arm rest instead of a bar to hold. My arm is still sore at the end, but I think the bar would be worse. I don't have to have my other arm up - I rest it at my waist. That's REALLY helpful, since the shoulder on that side is sore. I've been doing all my carrying of heavy stuff on that side (I DO NOT want lymphedema) and that arm wasn't in the greatest shape before this started.

The rad nurse said exercise will help to ward off the fatigue, so that's probably why the yoga was so helpful. I'm starting to walk for exercise, so I'll see how that goes. I'm just getting out of the chemo fatigue  (just in time for the rad fatigue) so my usual walking stopped months ago. Before that, I went for an exercise walk with a friend every evening .Unfortunately, my Taxol legs are still sometimes sore, and I can't feel the bottom of my feet.

Well, you all have tomorrow off, but I go for another zap in the morning. Enjoy the rest of your weekend.

Leah