July 2009 rads group

nwood450

MsDebS...  I have been experiencing dizziness and nausea/heartburn.  The dizziness was so bad two days ago ... staggering and bumping into walls dizzy.  Nausea today after rads (#10) and mild dizziness. The techs and nurse all insist that "it's not their fault".  I'm not looking to blame anyone, I just want my physical feelings, which are VERY REAL, to be validated.  I guess that's a little too much to ask for.  I have not experienced vomitting ... hang in there! 

Nancy

rlnew

Went today for my first session. My appt was at 9:15. Unfortunately one of the three machines was down. So, one woman with an 8:15 appt was still waiting along with all of those with appts after her and before me. Finally at 10:00 they came and told me that as I was only getting x-rays today to make sure the planning looks ok that I could go and they would just do the x-rays and my first treatment tomorrow. The wait when I left was close to 1 1/2 hours. Starting in August, my time moves to 4:15. Wonder what the waits will be then. The other ladies did say that there often are no waits so hopefully that will be true.

princessmarnie

I used RadiaPlex RX Gel - worked wonders - 5-1/2yrs ago, only have a light tan area now on exterior, have tons of scar tissue and nerve damage on the inside though.

Leah_S

I'm sorry to hear about the nausea and dizziness some of you are feeling. nwood, I know what you mean about having your feelings validated.

 Maybe the next time we have an se and are told it's "not from the rads" we should just smile sweetly and say, "Yes it is". They'll probably keel over frm the shock.

dhancock, are you sure you were told 1-2 GALLONS of water? Maybe it was 1-2 QUARTS? If you drank 2 gallons of water a day, you wouldn't have time for rads - you'd be spending all your time peeing. I was told 2 liters - a liter is slightly more than a quart

Yesterday when I was waiting for just under an hour, I looked at the list and saw I was next. YIPPEE thought I. The lady who was in having her treatment was having her FIRST treatment. We all know what that means. Sigh.

Yesterday I noticed that the side of my neck was slightly pink and felt sunburned. I put aloe vera on it, and asked the tech today how far up on my neck the rads got. Yup, right where I saw pink. The rest of my chest wall and underarm don't show anything yet. I guess the aloe vera must be working, since I didn't know about the neck. Today I had that on the BACK of my neck. Exit burn. Aloe vera there too now. Hope it helps. I am NOT delighted that a skin reaction is starting to show up after only 6 treatments.

carpediemocc, I know what you mean about being freaked out & not knowing what to expect. The lung/heart thing is my main worry. I am a religious person, so during the time I am getting the zaps I pray that they will do what they are supposed to do and not do damage. For me it helps.

Leah

rreynolds1

Hi Everyone,

I just discovered a great bra for those of us who had lumpectomies or partial mastectomies.  It is the Barely There bra which I found a Kohl's.  It doesn't give much support but 17 treatments in I am more concerned about comfort than perkie breasts.  It truly is "barely there."

Roseann

hrf

I have had 7 tx so far - 18 more to go. I am starting to feel increased fatigue and definitely feel tightening in the area of my arm where I had all those lymph nodes removed .. feels like the cording again. I better start doing the walk walking and stretching again.

carollynn79

I had my fifth treatment today and am tired, my arm hurts and my breast is pink, the onc says I am large breasted and fair haired so will have more issues, he also likes to see the red, says it is working.  He also told me as we progress if I follow his plan it will look nasty but won't feel nasty so hope he is right I am using the aloe the nurse knows onc does not.  As far as the bra goes, after lumpectomy all said where your bra 24/7 once rads begins they say give it air, do any of you still where bra to bed or only during the day, I am a D cup.  I stopped at night, breast is a littel sore but could be the rads too!!  Thanks for your input.  Well since I have to have another SIM and no more treatemnts this week, after SIM tomorrow hubby and I are flying the coop for a few days, going to the Meijer Gardens in Grand Rapids and where ever else the road takes us for 2 days!  Doc says enjoy wine tasting not drinking, all in moderation!

tara35

Did you get chemo also. My surgeon was telling me once you have few positive nodes you will have to get chemo.

dkhancock1948

Leah:  It was 1-2 gallons.  I made of page with formulas on it in Excel and had a glass that I knew was 10 ounces to a certain line, so every time I drank a glass of water (or anything when I was getting chemo) I put down 10 ouces.  The Excel program added it up automatically, so I knew how many ounces I drank.  Before I started drinking a gallon, I had major problems with my mouth.  The water seemed to help.  Also, it helped my indigestion. And, yes, I peed a lot.  Now that I am doing rads, I am doing good to drink 60-70 ounces a day.  My doc who gave me the chemo said that about the water and so did my chiropractor (she also did my acupunture).

15th out of 33 today.  I was given another cream to put on and told not to use the Aquaphor now.  They gave me RadiaPlex RX Gel.  It states on the tube it is for "irradiated skin".  It is to be put on 3 times a day, with 1 time being done immediately after rad.  I think it has some numbing ingredients in it. I also bought 99% Aloe Vera gel today.  I am starting to feel the soreness of the skin.  After this week, just 3 more weeks.YEA

I haven't worn a bra since my mx, but am getting anxious about getting one.  I asked yesterday about getting a prescription.  The nurse told me they really don't want bras worn until 3 weeks after the rads.  That puts me to where school starts again and I really would like to have a bra to wear and whatever I need to go with it.  I am not too self conscious about wearing no bra, but I am very, very self-conscious when I hug someone.  Since I am a widow, I haven't had a full hug since before my mx.  It just feels weird not wearing a bra and only 1 boob.  Has anybody else felt this way?

CarolLynn:  Have fun and relax.  Enjoy yourself!!!

Helen: What does cording feel like?  How many lymph nodes were removed?  Were any positive?

PrincessMarnie:  I see where you used the same ointment that I received today.  Did you use it the whole time?  Does it take care of the little blisters?

Debbie

Leah_S

Debbie, I can't IMAGINE drinking that much! Even before chemo my sphincter was a bit weak (after 6 kids wht else could I expect) and then Taxol weakened my muscles even more. If I drank that much I'd LIVE in the bathroom. Um, yes, I know tht's one of the things to deal with after tx for bc finicshes. Not looking forward to it. I am goiing to wait until I figure my muscles are back to normal (I've also noticed a difference in my legs, my hands and when I sing).

About the bra thng - I had a mx (Nov. 24) but haven't gotten a prosthesis yet. I'm small (AA cup) so stuffing my regular bra with cotton is how I've gotten away with it. The nurse said when the skin gets red no bra, but on me it's not really noticeable, especially if I wear a t-shirt or shell with a shirt or jacket on top.

tara35 - I had chemo, 4 DD A/C and 4 DD Taxol. The 2 best things about chemo:

1. I did not have to shave my legs for 6 months.

2. It's over now.

Leah

Leah_S

p.s. I also jinxed myself about the nausea. About an hour after I posted I started feeling it. I had hardly any nausea with the Taxol and none with the A/C. I guess my turn has come.

 At least when I got nauseous when I was pregnant I got a baby at the end.

Sigh.

Leah

survivorsal

Well ladies, I just had my 7th rad and it was all I could do to drive home.  Luckily it is only about 20 minutes.  I slept for about 2 hours and now I think I know what they mean by "fatigue".  I really hope it doesn't get any worse than this but I'm not too optimistic at the moment.  Gotta hang in there...

dkhancock1948

Leah:  You want to hear something funny.  My GP had prescribed me Hyzaar - as my bp was high after my husband passed away.  When I went for my first physical in 4 years last October, I told her about having to go to the bathroom so much.  I wear Poise all the time, because I wasn't able to make it to the bathroom on time.  She prescribed me Detrol, so I wouldn't have all the urges.  It was working great, then I found out I had cancer and had chemo.  It was like Detrol didn't even exist in my system when chemo started.  I just thought it was ironic that Hyzaar is also diuretic.  So I was taking a diuretic and another pill to stop the urges.  Oh, well, the fun of getting older.  Actually, I started noticing a difference after I had a complete hysterectomy and it continued to get worse.

6 kids.  Wow!  What are their ages?

MsDebS

Nancy,

Today was good.  No dizziness or nausea.  But I agree....my symptons are real and the techs and nurses said that it was not from the rads but I think it has to be.  Hope tomorrow is good also.....3 down 30 to go

Deb

tara35

I have a positive attitute about life, but yet I heard of stories about people having chemo and having a very bad reaction towards it.  Do you of anyone having chemo treatment and was able to still go to work?????? I have to meet with my surgeon this Friday to discuss more details of the removal of my lumph nodes, Hoe many of them were positive 7/9/09. My doctor was telling me I will have to get a very strong dose of chemo. My onc. will discuss all the treatments with me. I'm only 35yrs old  and I will like to know of any sides later on in my life.

dkhancock1948

I had a/c 4xs and taxol 4xs, both were every two weeks.  I was very fortunate.  I was not nauseated.  I continued to work the whole time.  I am a kindergarten teacher.  I did stop dancing around and jumping during my music time.  My aid took over my music everyday.  I walked really slow and my feet hurt from the neuropathy from taxol, but I worked.  The doctors asked in the beginning if I was going to stay home.  I told him no.  I was a one-salary family since I am a widow.  Then they asked what I did.  I told them I was a kindergarten teacher.  They said oh, no.  But, you know what, I made it.  I did get a few colds, but I made it. They told me that I was on an agressive regimen.  I found out later that they were giving me 325 ml of taxol and had it going into my body in less than 3 hours.  I am 60.  My neuropathy is now just in the toes of both feet and my thumb, index and middle fingers on my left hand.  It is so much better.  I am getting my strength back.  My chemo was from 12/5 - 3/19, mx on 5/19 (I had shingles around the entire left side of my body 2 days after my last chemo - so surgeon delayed surgery a month) and finished my 16th rad today with 17 more to go.

Everyone is different, we react differently to each treatment. No two treatments are alike.  They can give you generalizations about what will happen (like losing your hair with some chemos) and what could happen (like neuropathy from taxol).  Some people get no side effects.  Others may get one or two and others get more. You just need to keep your doctor informed about everything that happens to you.

I am new to this compared to a lot of the ladies on these threads.  You have come to a very good place to discuss your feelings. I pray that you get the info you need and are comfortable with your decisions.

Debbie

carpediemocc

That's funny that they say it's not the radiation. My doc told me drink plenty of water to avoid nausea. I know that when I did chemo they prescribed three differnt pills looking for one to curb my nausea and finally settled on Lorazepam. It helped with nausea and anxiety.

As far as now, after my third treatment today. Skin a little pink. I can feel a burning sensation. No other side effects. I am very fair skinned so who knows what will happen,

hrf

dkhancock....they removed 6 nodes and 4 of them were malignant....the cording feels and looks like a rope pulling tight in your body...from forarm through torso....they advise lots of stretching

dkhancock1948

Helen:  That sounds really painful.  Can they do anything for it? Do they say what causes it?

Carpediemocc:  They told me to drink plenty of water, too.  I am olive complexion, but now am deep pink with 4 or 5 spots of rashes.  I only have 17 more times of rads.  YEA.  3 more weeks after Friday!

MsDebS:  I am glad to hear it went better today!

Survivorsal:  Hope tomorrow is better for you.  Thank goodness for the weekend, so you can recoup.

goldenlover

I'm one third of the way through now, 11 out of 33. I love the whole radiation isn't causing that logic. I started coughing last Friday and was coughing hard all weekend through Tuesday. The radiation oncologist said it couldn't be caused by anything that they were doing. I then met with my allergist. He said that it wasn't my asthma. He felt that the radiation irritated my lungs. Bottom line, medicine is not an exact science and most of the time docs are just making educated guesses.

 I have been using Walgreens pure aloe vera gel with no fragrance or alcohol. It is cheap, two tubes for five dollars. So far I don't have any burning or redness. My Dr. told me that there is no official proof that aloe vera prevents burns but he has seen a lot of anecdotal evidence that it works in his office. I will continue to slather myself up. I usually come home from treatment and slather it on and lay on bed and wait for it to dry. My two teenage daughters think it his hysterical that mom is laying around topless.

I'm having my older daughter's high school graduation  on Saturday. It should be interesting since I'm having a hard to getting real motivated to do everything...

dkhancock1948

My rad doc said that the radiation they are giving me will go 1-2 cm into my ribs, top and bottom parts of my lung, 5% of my heart and I am now pink from my neck slanting down over my right breast to under my arm on the left side.  She told me my ribs will be weaken on that side and that it could cause lung infection.  Every time I cough or have to clear my throat more than normal, I wonder if this is the start of the lung infection.  She told me they will be able to take care of it, if that happens.  I found out 2 days ago that since they are radiating above y clavicle bone, the rad is coming out the top of my back on the left side.  They explained that the rad coming out is more intense in dosage than the dosage going into the front.

I know all of our tx are as different as we are, but it would be nice if they all understood that we are the ones who feel the difference in our bodies after tx are started.  And, like someone else has said, it would be nice if they would validate our concerns and acknowledge that we might know a little bit about how our bodies work and when we feel the difference after we started the rads - whether it is the dizziness, the nausea, the coughing or the pains we feel inside - that were not there before tx started.

Debbie

TwillNW

I had my 14th of 28 full breast rads today - halfway done with that program! I don't know if I will be getting boosts so will ask the rads onc on "doctor day" tomorrow. 

Roseann, I picked up a couple of Barely There bras after my surgery (lumpectomy) and agree they are a good choice - enough to feel like you have something but very light and comfortable. 

My main se from rads so far has been tightness in the armpit area, and I am finding that the slight compression of a sports type bra seems to help with the tight/sore feeling. 

 Goldenlover, I am using Walgreens aloe vera too - alternating it with Keri Advanced which is also on my center's list of approved products.  So far, so good.  I am also working hard on hydration - but will be spending a lot of the next few days out in the heat at our county fair so will have to work extra hard on both hydration and blocking the sun.   I'll be busy - too much to do to even think about fatigue!

Tricia

jdeking

Helen (hrf) - I also had problems with cording, and they say that it gets worse during rads. I had a horrible cord that ran from armpit down into my hand around my last chemo tx, and stretched daily. Luckily it went away right before rads started. Now I am trying to stretch and exercise to keep that arm moving well. Good luck with yours!

Tara - I had chemo, 6 rounds of TAC. I managed to work full time the whole time. I work 4 10-hour days, so would have chemos on my day off (Friday), then take the following Monday off. It was hard sometimes, but manageable. You will have to see how your body reacts, as everyone is different. It is very important to rest when needed! (I am 34 yo by the way). I advise you join a chemo thread as it is wonderful to be able to 'talk' to other women who are going through the same thing as you!

kim40

I had 3 treatments so far and so far so good.  Today is number 4.  No problems yet with fatigue or redness so I guess we'll see what  happens next week.  3 down and 13 to go!

Leah_S

What's with the waiting where I get rads? I can't get away from it. When I got there today - only 2 people in front of me.

Then the machine went down. Sigh.

So far hardly any pink, except for the area I didn't realize was getting rads. I take that to mean the aloe vera is working, and  I keep slathering it on. I got a gel that's 97% aloe vera, the rest gelling agents (no parabens). I remember using aloe vera for my kids' diaper rash, straight fomr the leaf. If I used it straight from the leaf for the rads I would use up our plant before this is over!

My terrific kids are 31, 27, 25, 23, 17, and 15. I also have 4 grandchildren, and in October will have 5.

Leah

Irishred

I had a lot of swelling also, went back to surgeon, and it was fluid buildup (felt like a softball under my arm) he drained it several times, instant relief, didnt hurt a bit.  about 16 oz first time less each time after that.  Go back to your surgeon, you will get relief.

nwood450

Leah ... I took your advice.  Today was my doctor day and when I told her of my SE (nausea, dizziness, heartburn) she dismissed it as not a SE of rads.  I said ... very sweetly ... I disagree with you.  My body is telling me something is happening and it's only been happening since the radiation.  I said please validate my feelings.  She didn't know what to say.  She stumbled around for words and then apologized.  We are going to try some Zantac for the heartburn.  I'm not trying to be disrespectful in any way, but my physical feelings are very real .... maybe it's anxieity.  God knows there's a lot to be anxious about.  But just validate me.  The one thing I can say about my radiation experience is that I have never had to wait more the 10 -15 minutes.  Things always run very smoothly and for that I'm grateful.  Another piece of good news ; I found out today that I will be getting 28 tx not 33 as first expected. That was like a little gift.  I'm more than 1/3 of the way through!  Hugs to all...

hrf

dkhancock ....just as jdeking says....cording is common folloiwing surgery when all the lymph nodes are removed. It had gotten better with stretching but the rads do irritate it so I have to make sure I do the stretching again. I was surprised that it started so soon into tx...felt it within 5 sessions. So far the Glaxal cream is working on the radiated area - it's just a little bit pink. I have stopped wearing my bra and prostheses and gone back to the cotton camisole with soft inserts - hoping that this will be more gentle.....8 down and 17 to go. The waiting hasn't been a problem - sometimes they are even early but mostly almost on time - within 5 to 10 minutes.

PackerFan

I recently bought a Barely There bra at Kohl's as well.  It feels extremely comfortable, as my radiation tech told me no more underwires for awhile.  I only have 6 treatments left and can hardly stand wearing a bra at all (don't around the house) but going out I'm a little uncomfortable letting the girls free   Our radiation department is very on time, and the longest I've ever had to wait is 15 minutes beyond scheduled time.  They are very attentive to my feelings, my skin and my mind...I see the radiation oncologist once a week and the nurse once a week.  I did ask about the pain between my shoulder blades and was told it wasn't from radiation, but after reading some of the posts, it may be exit pain?

Leah_S

nwood, I'm SO glad it worked! I have generally found that getting angry doesn't help, while quiet insistence gets better results.

Sunday is doc day for me. Since yesterday evening I've been almost constantly nauseous - mild but there, so I'll see what happens. In the facility I use we see the doc once a week (unless there's a problem and you need a doc in between) and can go in to see a nurse any time you want to.

This "rads don't cause that se" is a new thing for me. I had my chemo at a different hospital, and the nurses there were alway saying that se's are individual, and would help with whatever we needed for them. I sometimes felt that if I said "I've been getting an unquenchable urge to giggle every morning at 10AM they would have said, "Well, that's a new se but it could happen" .

My weekend has already started. Yippee! 

Leah