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Old 10-23-2007, 03:44 PM   #1
TSund
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All things RADIATION

Well, we are on to the next item on the agenda and I feel pretty awfully unprepared. Please share any wise words re: rads.

I think I read that a boost to the axills not a good idea given no better outcomes and greater lymphedema risk? Could someone send this study? One would think all radiologists would keep up, but since I had to tell the 1st oncologist we consulted about TCH (we changed docs!) I don't have tons of trust.

Supplements? Or not? It seems like continuation of the astragalus and reishi would be good as I'm told blood counts can suffer as a result of rads. Is that WBC and RBC? On the other hand, it's continuous, so there's no "window" like we did for chemo...

What do we look for in a good radiologist and a good radiation tech?
What questions do we ask?
What lotions, what salves, what to avoid, etc etc.

Thanks as always

Terri
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 10-23-2007, 04:25 PM   #2
Grace
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I had a bad burn from radiation, but all women react differently. The only cream that worked for me was silver sulfadiazine, and it was not recommended by my radiation center, but by a friend in the medical profession. Fortunately, my radiologist was open to prescribing it for me, and it worked almost over night. But, again, we all react differently and many women get just very light sunburns. Good luck.
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Old 10-23-2007, 04:55 PM   #3
Margerie
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Terri,

I got boosts, but I believe it was on my scar line. The one thing I wish I knew back when I started rads was the mapping appointment is long, and the room was freezing. I wish I had warm socks, fuzzy pants and a warm hat on my baldie head. Somehow I was in flip flops and a skirt.

I used aquaphor lotion liberally and used a prescription steroid cream when my tissue broke down. I had problems because I was still on chemo, so hopefully that will not be the case for you.
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
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Old 10-23-2007, 07:06 PM   #4
tousled1
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When I had radiation I used aloe for my skin. Toward the end I did start to get extremely burned so I asked my radiation oncologist for a prescription for silver sulfadiazine (spelling??). With radiation you can expect to get tired but I believe that's only because of the fact that you have to go every day. I had no problem with my blood counts during radiation. I also received Herceptin weekly while going through radiation.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 10-23-2007, 07:30 PM   #5
Becky
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First - let them tell you what their rules are. Usually you can use Aloe, Silverdene (the prescription Grace mentioned), Aquafor or Biofene cream but you cannot have anything on during the treatment, just afterwards as it can deflect the beams.

The counts do not get affected very much if at all by rads. The rad oncologists also will not let you take any antioxidant supplements for the same reason as chemo - it could potentially protect cancer cells.

One good question is how much their machine is down for unscheduled maintenance. You really can't be out of commission during rads over and over again. Get a rad onc with a good local reputation. His/her personality and yours don't need to mesh and be soul mates. They aren't in your life that long and even if they want to see you once a year, their job is done forever after 6-7 weeks. Get the best in their field. Ask everybody. Axillary rads are given if one has over 4 nodes affected so I can't comment but there is always some in the field (even though they are so much more targeted now that ever).

I burned bad and I have no idea why as I usually tan otherwise but the sun never shone there is maybe that's why.

Ruth will be tired from rads but not nearly so as with chemo. Its just a day to day thing and really doesn't hit you until the 3rd or 4th week is over. Then you deal 2 more weeks or so and then its all behind you.

Wear cotton cammies or cotton bras inside out (so the underneath band against the skin is the cotton and not the elastic) if she burns. Or wear nothing (I went to work in an office so I felt compelled to wear something). Ask away, we are here for you.
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

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Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 10-23-2007, 09:02 PM   #6
DonnaD
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Hi Terri
Next step coming up. Go Ruth!

I did not have many issues with radiatian. I traveled 55 miles one way for radiation to be at the same teaching hospital where my chemo was.

My rad onc gave me the cream, first an aloe then once into the boost a heavier cream. I did not burn during treatment but did have a delayed reaction after the boost. Had a imprint of the boost area, which was very sensitive. Her nurse was a wound specialist and gave me a wound dressing called Vigilon. It was like a moist gel pack. It felt great and worked like a charm. It healed in two days.

I had only one blood test a week into treatment. Counts were fine and I did not have another blood test.

The mapping does take a while and I did not know that is when you get the tatoos. They are so small it is not a big deal now but that experience was a little unsettling for me. Wasn't that painful just felt like I was marked forever by cancer.

My machine was down twice in 6 weeks. Once I had to go home, 110 miles, without treatment. The second time it was down I waited 6 hours and had a second treatment in the same day. I did not want to go again without a treatment.

I never felt tired and was able to exercise and do all normal activities. But remember everyone is different. Remind Ruth to listen to her body.

Good luck you'll do fine.
Donna
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Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
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Old 10-23-2007, 09:43 PM   #7
Jean
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Hi Terri,
Glad you are moving onward and forward -

Here is my 2 cents worth.
I always made my appointments at the very end of the day. For the
reason if the machine did have a problem I would not be stuck at the
center sitting and waiting.

Also - my hospital where I had my rad treatments had late hours for those who work, the last appt. would be 8:30 PM...and I would take it.
It worked great....the treatment only take a few short min. by the time
you get set up (that takes the most time ) the actual treatment is
so very short.

The other added beneift of the last late appt. I would just go home
get into my PJ's and go to bed. I did not have the fatigue and exhuasted
feelings from radiation. I just went to bed for the night and woke up
refreshed the next morning. I had just one afternoon appt. and I felt
so exhausted for the rest of the day - never repeated that again.

Ruth should not wash the treated area with any soaps. It is best after treatment when Ruth gets home to take off her top and allow the air to reach the area. I was fortunate that I did not have
any burn issues. I did use the cream that the dr. provided.

Wishing you both the very best.
Jean
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Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 10-24-2007, 05:25 AM   #8
Believe51
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Smile Where??

Tsund, quickly refresh my mind to where the radiation will be in case I missed it somewhere.

If PELVIS radiation: There are medicines to help prevent or aid in the problems that could be incurred during pelvis rads. Hubby had problems, some which could have saved him the agony of what he went through. (We went to a seperate hospital for rads, had a fill-in doctor because the one we picked had a baby) This doctor prescribed medicine but left the most important one out.

Update us please. And do not be afraid. Pulling the post up for you.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 10-24-2007, 06:31 AM   #9
TSund
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These are rads to the breast area, nodes, MRM scar, etc. to help prevent spread. Recommended because of the size of original tumor area. Also was assumed she was lymph node postive because of size, however, we may never know given results of pre-surgery chemo and sentinel node procedure.

I'd also be curiousu as to the studies that show results of rads vs no rads vs boost rads esp. on HER2+, Herceptin receiving women.
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 10-25-2007, 10:00 PM   #10
Sherryg683
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Physically radiation was a walk in the park for me. Although I did get a little tired toward the end. The burn was uncomfortable but not unbearable. I found that emotionally it was hard for me. Having to come in to the clinic every day for a whole month was hard. It really made me feel sick, not like I was healthy but it hit home shall we say. By the time it was over, I was completely ready for it to be..sherryg
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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