October 2010 rads

ranafazal

Hi Joan, Lorraine,Roberta2 and Heather...good to have you all too as part of my medical team!

I have been taking Tamoxifen since 10 days now, and I double checked the onc. if I should not wait until after rad, but she said it was absolutely OK to start immediately.I start rad. on oct 6th so let's see how it goes, will ask the onc. there about the effects on lung and heart vis a vis the right/left breast question.

DawnKY

I commented on the Sept thread since I started my treatments yesterday, but thought I'd post here as well since the majority will occur during October.  Second treatment today.  I am not sure if it's psychosomatic or not, but my breast is aching somewhat.  I think it's too early for any real SE, so I'm probably imagining it. 

Okay, now I am having shooting sharp pains, and I am NOT imagining these!  :-(

LtotheK

Quiche,

In addition to the heavy legs, I really do still have some queasiness brought on when I eat.  I also find healthy foods wholly unappetizing, and this is of concern to me.  All I want is junk.  Everything, from chicken breast to beans seems gross.  I also still poop out early, and lack my full drive.  Finally, I still have hot sweats.  They aren't as nuts as they were at the beginning, but lost a lot of sleep last night pulling and pushing covers and ripping things off.  I am trying to put a positive spin here--maybe it's a detox every time it happens ; )

My doc was adamant about waiting on the hormonals until after rads.  I know others want it in addition, some studies show it works best during radiation.  For me, I just can't.  I already feel punk, radiation is going to make me tired, and I just won't stand for another set of SEs in addition.  It's too much.

And yes, thank you all for being part of the med team!

fayebu

Hi All

Went for my dry run today and received 2 tattoos . My  tech said they would give me one more Tuesday when I start. I will have 33 treatments lying on my stomach. The good news  is my thyroid biopsy came back negative. Everyone enjoy the a good weekend

1marmalade1

5 down, 20 to go!!!   This week went by crazy fast.  Hope the next 4 weeks do, too.

 Everybody have a great weekend!

AICa

Has anyone been given a reason for avoiding antiperspirants? It's been unseasonably warm here, and I have an outdoor wedding to attend Saturday afternoon. I googled avoiding antiperspirants during radiation and came up with two reports that said there was no basis for that; one suggested that it was thought to increase SE but didn't find it to be true. I asked a tech and she knew the rule but not the reason. So I'm going to use my regular, reliable deodorant/antiperspirant this weekend. I'm looking forward to smelling good.

LtotheK

AICa, the metals in the deodorants can cause radiation scatter, at least that is what my nurse told me.  I have spent years trying to find an alternative, as I don't think aluminum based ones are good.  I have found the LUSH products, particularly the blocks, to be really quite effective and all natural.

DiamondGirl

Hi sistas,

Please count me in for October rads too.  I had my simulation done on Sept 7th and rads to start on Sept 15th, I started an infection that just cleared.  So I will have my 2nd simulation done next Monday morning, assuming they will start the rads on Tuesday.  I'll have 33 txs.  Been reading a lot from the July and September thread and am still worried.  I am thin built and am worried that the rays will damage my lungs.  

I spoke with my BS last Wednesday because I was having 2nd thoughts about radiation.  He said that lumpectomy and radiation is like peanut butter and jelly so I should not skip it.

Got my PET scan result this morning and I am all CLEAR, Yeah!

Have a great weekend.

quiche

Bo: Thanks, that gives me great peace of mind. Sounds like I'm going to have to have a chat with my husband :-) I'll miss you on the board, but will keep in touch. Wishing you the best.

MPH70: I hear ya as far as the legs and fatigue, but only wish my appetite was a little more suppressed. Eating it about the only thing I can do with gusto these days! As far as hormones during rads, my med onc is on the side of getting started right away. My rad onc doesen't have a strong opinion either way although he said if you're having side effects it's easier to figure out what's causing them if you don't have two things working at the same time. I'm still experiencing body aches and bone pain from my last chemo so I've decided to wait a couple of weeks until that all subsides and then I will start on Femara. My own personal compromise :-)

DawnKY: I have sharp pains in my breast too, but have had it for years. I mentioned it to a doc once she just laughed it off. Sometimes it's worse than others and during those times Tylenol seems to settle it down. Let me know if your doc has any thoughts on the cause.

DiamongGirl and fayebu: Whoo hooo! Two negatives do equal a positive. Great news about your test results! 

I had my appt with my rad onc on Thurs and it was an easy one. We reviewed my case and then I had a CAT scan. I was marked up with permanent marker (3 Xs, midchest and both sides) These marks are positioning marks and are covered with waterproof tape.

I will start my rads on Wed, Oct 6th. 31 blasts with the last 6 being boosts which are more direct to the specific tumor areas. I'm going to do both breasts and the lymph nodes on my right. The good news is that if all goes as planned I will be done by Thanksgiving!

Get this, my doc doesn't recommend any lotion at all!! I had never heard that one before. His theory is that there is no preventative lotion so he thinks it best to see what symptoms develop and then treat the symptoms. I'm a little nervous about that, but have a lot of respect for this doc so I plan to give it a try (although I have a big jar of Aqhaphor standing by).

I will be lying on my back, but did ask him about the face down position. He said, "Oh, yea, that's a NY thing". He does have a lot of respect for it, but it's not something that is done at this facility. He assured me they take all precautions blah blah blah. I don't really have much choice really and am OK with moving forward. I was warned that I will probably have some lung damage, but "it will be minimal", whatever that means. He doesn't seemed concerned about my heart at all, I guess that's good.

My next appt will include the tatooing and simulation as well as my first blast. I'm going to enjoy the next few days before getting this party started :-)

Thoughts and hugs to all.

bopeep

Fatique on Rads:  I just spent the last week recovering from 3 weeks of rads, and I had no idea how much it had affected me.  I've been sleeping 12 and 15 hours a day, and it's been doing wonders!  You will get tired, but you will recover!

Anonymous

Please add me to the Oct. group.  I saw my RO and had my CT Scan done on Tue. I'll have 33 txs. I'm hoping to have the simulation done and start treatments this week so I will be finished by Thanksgiving.

quiche-My RO also said no lotions, gels, oils, or deoderants until she tells me so.

1marmalade1

I was told by my rad onc and nurse to apply Glaxal Base, starting on first day of rads, 3-4 times daily.  Their advice was to be pro-active and hope that SE's would be minimal.

DiamondGirl

Hi,

Ranafazal ~ My med onc said to stay on Tamoxifen unless rad onc said otherwise.  When I talked to rad onc, initially he said it's alright to stay on it, but he would prefer that I get off it.  So after I told him what my med onc said, he asked me to stop my Tamoxifen.  The reason being that the rad onc needs to make sure that whatever SE that comes along, they can tell right away what caused it.  If Tamoxifen is in the system, then it will be harder to rule things out.  I stopped my Tamoxifen around Sept 12th.  

Quiche ~ my rad onc suggested Miaderm (www.miaderm.com) and Aquafor.  I am to start using either one after my first treatment.

Kristian

Hey Pomegranate,

I have been looking at the posts on this.  I just finished surgery and think I will start radiation either late October or early November.  I still have to meet with my radiation oncologist.

I read a book last night, "The Intelligent Patient Guide to Breast Cancer (4th edition)".  It is written by Canadian specialists.  It talks about brachytherapy, I am not sure if this is what your sister is getting, but it sounds similar.  Hope that helps, although I am sure she will get all the info she needs when she meets with her RO.

Good luck to everyone getting radiation this month.  I may or may not be in your group.

Take Care.

Kristi

CELinVA

Hi, I just wanted to weigh in on my radiation so far - I've had 13 treatments out of 28 and then will have 5 boosts.  I am a little pink and a little sore, but nothing really troubling.  I'm working full time, so I do notice I get more tired as the week goes on, and last Friday evening had no energy, but slept 10 hours and felt like a new person the next day.  I've had some occasional tightening in my chest, but the nurse says it's maybe lymph nodes that are inflamed as a result of the radiation.  Good luck everybody as we get through this month!

joan888

I am set up for my tatoos and simulator tomorrow, Oct 5th and I am hoping that I can also get my first treatment at that time, but not scheduled to staret until the following day. Quiche... sounds like we are on the same schedule.

Joan

Beanius

Hi, I was wondering if I can join this thread...I don't think I will start rads till mid-November, but I'm meeting with my radiation oncologist on Oct 22 for a second planning meeting. If all goes as planned I will start rads just before my last chemo cycle (6 cycles CMF - cytoxan pill treatment). I'm trying to figure out what will be the best lotions, etc. to get through it as I have very fair skin.

Best wishes to you all,

~Beans

DesignerMom

Beanius-  Come on in, the water's great!  As we are good friends already, we'll get through this next rads madness together!

toni30

Hi Ladies:  I am meeting with the rad onc this week - I may start in October or November, not sure yet. The New England Journal of Med recently reported that for women with certain types of lumpectomies, three weeks of rads is as effective as six weeks.  Has anyone had this conversation with their radiation onc?

LtotheK

Toni30, ugh, that kills me--I haven't heard that, but I am finding that they are really on the verge of a lot of new information:  TailorX, etc.  It is clear to me that I am being overtreated, but that's what the story is until we know for sure.  I read in the NY Times they think the sentinel node biopsy may even be unnecessary!  Sheesh, would have loved to have been spared the lifelong disability from lymphedema threat.

My radiation oncologist is awesome, but these guys are not into negotiating.  What he usually tells me is, yes, that's encouraging, this is what we do until the jury is out.  I'm with an NCI hospital.  It's great on the one hand, very by-the-book on the other.

LtotheK

Where is that study?  On NEJM, can't find it...thanks!

CT124

hmh23

I know how you feel. originally they said prob no radiation, just chemo, then got sent for a consult and will know tom exactly how long-bw 4-6 weeks. I am soo tired of being a patient. Went back to PS and he overexpanded before treatment plan done so am feeling really tight.

Quiche-I am just beginning to feel more normal again after last rnd of TC. Had that heavy leg feeling, soo fatigued and couldn't get rid of the eyelid twitching. I know you said you are getting some lymphadema. I started getting some after last 2 expansions. Don't know if it is related-anyone else have this happening. Have you gome to compression sleeve or are you working with massage and exercises?

I will be starting tamoxifan next but med onc said to wait after rads.

Toni30-I plan to ask rad onc tom about shorter tx. I have seen it referred to as Canadian protocol. Don't know if I can do this. From what I understand, you are getting same dose of rads-a little more with each tx, so don't know if too much of heart and lung tissue will be in rad field. Mine told me that will also determine how many txs. I would ask though. Everyone's treatment is soo different. I kept looking at the chemo protocols that we were all on. Even though we have similar dx, most protocols were different. Can't wait til end of Nov for this to be over, then on to final exchange surg hopefully 3 mo later depending on how skin holds up and heals.

This has been such a long 9 mo and I really can't wait until I am no longer a patient. Thank you all for your thoughts and support. Hearing all of your stories has made this much more bearable.

DesignerMom

toni30-  I'm wondering if you heard about the British/Canadian protocol for rads?  The duration is shorter, but the dose is higher.  My rads Onc said he preferred the longer, lower dose method.  He says the higher dose can cause breast tissue hardening and scarring. He also made the good point that both those countries have government healthcare so it is advantageous to get patients treated faster.   If there is new info, I sure would like to know as I am about to start 6 weeks of rads.

I have not heard that they think the sentinel node biopsy is not necessary.  There is some thought that the full lymph node dissection may not be necessary.  As I understand, those nodes are taken out more for diagnostic staging, not to remove cancer.

LtotheK

When I dig up the NY Times article, I'll post it.  Sentinel node biopsy is now being called into question.  Overall survival rates are same, but I don't understand how they can diagnose without it.  Will report.

Linda603

I'm on my 4th treatment (of 30) and already have a little redness and soreness.  Anyone else have SE's this quickly?  It's nothing that "hurts", I just didn't think it would happen this fast.  I see the doctor Thursday morning and will ask about it then.   

CELinVA

I had pink pretty quickly but I've just now finished my 14th and it hasn't really gotten that much pinker, and it's not uncomfortable at all.  I've just been wearing camisoles, too and no bra.  You'll recover over the weekend quite a bit also.  I've done everything that everybody has said about lots of water, lots of protein, lots of lotion, but the kicker for me has been sleep.  If don't get enough sleep, I get hit by these waves of tiredness throughout the next day; and a walk at the end of the day feels great.

Linda603

CELinVA:   Thanks for sharing your experience.  I hope that my redness and soreness doesn't get much worse until it's supposed to.  I guess I was just surprised at how quickly this came on.  I have no problem wearing a bra, but we'll see in a couple of weeks...  

BetsyP

Hello Ladies,

 I would love to join this thread. I am coming over from the July chemo thread. I finished tcx4 3 weeks ago and am meeting with my rad onco on Friday for what they tell me is a three hour appt. I have broncitus (sic) now so i have to see my onco tommorow to try a different antibiotic did the zpac already and i am still sick. I to still have wicked bone pain in my legs but my onco wants to start weaning me off the pain meds cause i've been on them for over 4 months now. I hope there is not enough pain to warrant pain meds. Has anyone needed to take them yet? I have to do 35 treatments of rads and am ready to get this show on the road. I look forward to talking to all you and i hope to see some of my july friend here i will pass it on.Good luck Ladies. I do believe i see a light at the end of tunnel..

Betsy

cmksocal

Hi,

I would like to join this thread.  I had my lumpectomy last Tuesday and found out today the margins are clear.  I meet with the radiation oncologist next week and will have the CT and simulation/verification done so that radiation treatments will start the week of 10/18.  I am having 5 weeks of whole breast rads with 1 to 1.5 weeks of boosts.  I am looking forward to getting this all behind me before Christmas.

 Colleen

DawnKY

Quiche---the doc said that the pains were typical following surgery and during radiation and were due to nerve regeneration and stimulation.  I've not had them since, but I am having pain extending my right arm.  She said she thought this was again due to surgery (SLN bx--the BS said he had to go deep) and the fact I had a quite large hematoma develop at the site (it had to be drained---85cc of fluid) and there is still swelling there. 

I was given 6 sample tubes of Aquaphor after yesterday's session and advised to put it on after treatment and again before going to bed.  That's all that's been mentioned to me, besides cornstarch (see below) and aloe plant.

I was told no anti-perspirant so I bought some natural deoderant to use (no aluminum, no parabens), but when asked was told no to that as well, for the reasons mentioned (interferes with radiation).  I was told to use pure cornstarch under my arm and also on my breast to help with moisture absorbtion.  I have been using regular anti-per/deoderant on the weekend, but make sure to completely wash it away from that armpit on Mondays.