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Old 03-30-2007, 08:47 PM   #1
Mary Anne in TX
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Shingles anyone?

I got the anti viral med upped a bit when I visited the onc. today! I have pain pills too and ladocaine patches, but the itching is still nerve racking. If you've had shingles, can you put anything on the spots to stop the itching? It's a pain, but is only temporary! thanks for any input for the itching! ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 03-30-2007, 08:49 PM   #2
tousled1
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I had shingles shorlty after I had a lumbar spine fusion. I know the pain you are experiencing!! You can put calamine lotion on it but I found rulygel worked much better. Hope the shingles clear up soon.
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Kate
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 03-30-2007, 09:10 PM   #3
Mary Anne in TX
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thanks Kate! Do I just get rulygel at the drugstore or do I need a prescription?
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 03-30-2007, 09:48 PM   #4
caya
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Hi Mary Anne,

I had shingles on my lower left chin and neck this past November '06 - came out about a week after my cancer diagnosis. I got on the antiviral drugs within the critical 48 - 72 hours after the first lesion came out.
I got relief from the itching from clear pure aloe vera gel. I think it also helped to minimize any potential red scarring. But my lesions weren't too bad because the antiviral meds really knocked them out for me.

Hope you are feeling better, like we don't have enough to deal with?

Caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 03-30-2007, 10:41 PM   #5
Sherryg683
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Please don't mention that word. I broke out with shingles in 3 pathways (my doctor said he had never seen that before, it usually travels down one) at the beginning of February. It was excrutiating, the rash is gone but I am still having TERRIBLE lingering pain from it, I was told that a small percentage of people will have these pains that linger and that it could last up to a year. I wake up every morning in pain and go to bed with pain, and wake up in my sleep because the pain has migrated to my scalp and it feels like I am sleeping on thorns. When I get stressed, the pain gets worse...to put it lightly..I am miserable right now. The lidocain patches did absolutely nothing. I have been put on neurotin which seems to help some and makes life somewhat bearable but it also makes me feel drugged and tired and I can't quite figure out when to take it to minimize my pain but not interupt with my life. I also have to take loritab for the pain. I went to a neurologist who told there wasn't much that could be done for the lingering pain but take my pain pills and neurotin and wait for it to clear itself up, again..it could be a year. I forgot to say that I had another flare of the rash about 3 weeks ago on my surgery arm and breast. I was put on the anti viral medicine immediately on both occaisions but it didn't help these lingering pains. I pray that you do not have pains that last this long. I really feel worse now than I did while on chemo...sherryg683
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Sherry

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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Old 03-31-2007, 01:06 AM   #6
hutchibk
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What causes shingles?
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-31-2007, 02:31 AM   #7
Mary Anne in TX
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Shingles lie dormant from chicken pox until you're older (usually over 60) and your immune system is compromised and you are under much stress! While I know that radiation did compromise my immune system a bit, I think the stress really came from doing taxes! Next year I'll have them done a quarter at a time and hand them over to someone else to get stressed!!!

Sherry, my doctor told me that there was a chance that this pain could linger. He mentioned some med for that, but I didn't a listen since I'll see him again in 3 weeks. Bet it's what you take though! I'm so sorry to hear you have this pain on going! I can't imagine! You are so right about the head pains! Ugh! I am taking hydrocodone 5MG/500MG tabs - 2 every 4 - 6 hours and it knocks out the head pain for me. It was the kind you want to jump off a bridge, so I do know what you mean. Don't know if that would work for you, but both my rad onc. and onc. said it takes something really strong.
Best wishes to you on the pain subsiding. And thank you for sharing! ma

p.s. I'm now covered in Caladryl from the top of my arm to the wrist. I'll find some of the other stuff in the morning!
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 03-31-2007, 09:28 AM   #8
Sherryg683
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Hi Mary Anne, I am taking hydrocodine for the pain..it does work. I am just so not a pill take and I wait till I am in terrible pain to take it. I guess my fear is that I will get addicted to pain pills. My doctors have told me that is foolish and to take the dang pills..lol..sherry
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Sherry

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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Old 03-31-2007, 10:43 AM   #9
Mary Anne in TX
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Sherry! I know exactly what you mean about taking pills. I have never wanted to nor done many ever, BUT my rad onc is a young woman who takes so much time to explain so much when she sees me. She explained how they work to me and I learned that every time I wait too long, I have to "load up" my body again to get the full effect. I waited over 6 hours last night because I kept falling asleep and didn't want to get up, but I won't do that again. I have learned the hard way how right she is! So I take them faithfully and relieve the pain so that my immune system won't be under so much stress. If I understand correctly, that is what triggers it and we have so much stress with cancer stuff, I figure I have to work hard to allieviate some of the other. Who knows. I'm just doing my best. Thank you Sherry and have a wonderful day! We've got rain to make all the little flowers and palm trees grow in south texas. ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 04-11-2007, 01:14 AM   #10
shelli
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Wink Shingles

I'm brand new at this but hope this will be helpful. I have now had Shingles
5 times. Mostly get in same nerve track down leg, but also got it about
2 inches away from initial breast biopsy site a few days later. Got it again
during chemo. Usually take Valtrex immediately when 1st. signs appear and
it decreases the severity and length of time of outbreak. I have post herpetic
neuralgia. A newer med. similar to neurontin is Lyrica specifically for the pain from shingles. You may want to try it if the pain continues. It is prescription only and fairly expensive. I have not tried it yet but Iv'e heard
its often helpful. I usually just grin & bear the associated pain because I hate
taking more meds. I also have a very screwed up immune system with many autoimmune diseases prior to my cancer.

THE "SHINGLES QUEEN"
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Old 04-11-2007, 05:38 AM   #11
Mary Anne in TX
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Hi Shelli! Thanks ever so much for your reply. It was so helpful. And are you ever right about the Valtrex - really stopped the spread in it's tracks. I do still have pain, but nothing like before. I've gone from every 4 hours for pain pills to 3 times a day. I see the rad onc tomorrow and my reg onc a week from Friday to talk to them about further pain treatment if necessary. I'll ask about the Lyrica then. I think that the shingles has kicked in lympedema in my right arm or vice versa. Shingles is teaching me to treasure the good days! And to understand how everything I do, eat, drink, exercise, etc impacts my fight against cancer. And most of all to make the very most of each and every day! Thank you so much for taking time to respond!

I can't believe that you have done this 5 times! Whoa!!!! God bless your battle and your life. May it be filled with blessings. ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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