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Old 04-07-2008, 08:59 PM   #1
Sherryg683
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Help..i Itch

This has gotten ridiculous..I feel like a dog with fleas or something. This has been going on for about 3 months now. It will start with my scalp itching, then my whole body just itches. Feels like needles sometimes and if I scrach, it just makes me itch more. I have literally scratched myself till I bleed. It will last about 4 days, then go away for about a week then start up again. I went to the dermatologist and she couldn't find anything, said maybe my skin was dry but I don't think that's what it is. Don't really have any rashes. As some of you know, I had that horrible case of shingles that lasted 8 months but I never recall any itching like this. Although, through my itching..I do feel some residual nerve pain, not terribly bad though like before. I don't even know what type of doctor to go to with this,... a neurologist? Any advise or anyone had the same thing? I'm still on Hercepting but that's about it. No change in soap or laundry detergent. Is it just my nerves? ...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 04-08-2008, 04:07 AM   #2
Mary Jo
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Hi Sherry,

Sorry I can't offer any help on your itching but I hope you find the reason for it. The reason for my post really is to say your new picture is awesome. You look like "one hot momma" Very nice picture.

Make it a great day Sherry.....Hugs to you,

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 04-08-2008, 07:57 AM   #3
Paris
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Hi Sherry,

I have something similar. It started between my second and third rounds of chemo. I would start scratching in one place and then my entire body would itch. The more I scratched the more I itched. Right after my third round of chemo I broke out into hives everywhere except on my head, thank God! I saw a dermatologist who did a skin biopsy that came back inconclusive. I was put on prednisone, zyrtec, attarax, and zantac. It's a year later and I'm on just zyrtec but if I don't take anything for a couple of days I start to itch like crazy. In fact I just went three days without the zyrtec and sure enough last night I was itching again. The weird thing is it starts at the end of the day and like you I hadn't changed anything that would cause an allergic reaction. The dermatologist, who I saw last week, thinks it's an autoimmune weakness. I wish I knew when this was going to go away. I don't know whether to see another doctor or just continue on zyrtec. I guess it could be worse in the grand scheme of things. I just wish I knew what it was!

Let me know if you find out anything interesting.

Good luck!

Jamie
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Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications.
ER-/PR- HER2+++
Bi-lateral masectomy 12/15/06 w/expanders
SNB Node Negative
Chemo Taxotere, Cytoxan 2/07-4/07
Herceptin Started 5/07
Exchange surgery 6/15/07
Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy
On heart meds 'til?
Age 40 at diagnosis
Cancer may have been a defining moment but it does not define me!
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Old 04-08-2008, 08:06 AM   #4
SoCalGal
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ME too

I started itching after I added Avastin into the mix. At first I was itchy without any rash but now I've had a rash that started as a recall rash in my radiated area - then resolved - and now I have a rash on my arms. I use a variety of things to treat topically (baby oil/Egyptian Magic/sarna lotion/lukewarm baths/dove soap/hydracortisone cream).

I also am worse at night but I think it's because I shower and use oil and lotion in the morning. I think it's an allergy to spring in the air for me. At least I hope that's what it is because I'd like it to pass.

Just a note - scratching is the worst thing you can do. Try using an ice pack to calm the skin down. And try only lukewarm baths and Sarna anti itch lotion. For me - none of the antihistamines helped. It seemed to help to drink a TON of water and also get back on my fish oil supplements and multi-vites.

I'm itchy just typing this.
--Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 04-08-2008, 10:15 AM   #5
lkc Gumby
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Hi Sherry.
Me too! I attribute it to being on Herceptin since Nov 06. My skin keeps getting dryer and dryer and my nails are hopeless!
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 04-08-2008, 01:49 PM   #6
John21
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SOme medications cause ithcing. Have you started any new ones. I know Vicodin makes me itch alot.
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Old 04-08-2008, 03:25 PM   #7
rinaina
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I went through terrible itching non shingles related and it took prednisone both times to break the cycle of itching. Nothing else worked. You sound exactly like I did, same thing. I was told it was nerve related and for where it was located, they said it was due to my neck. I had 4 level cervical fusion in 2002 so who knows. good luck!
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 04-08-2008, 09:57 PM   #8
Sherryg683
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I took a benedryl last night and haven't itched near as much today but I'm probably just going on my "itch free" week and then it will start again. I need to go see my GP about it becase it's miserable. Rina, what dose predinisone did they give you? I've always been afraid of taking it because of the whole weight explosion thing. I have had so much problems with nerve endings and pain and stuff since the 8 month long shingles from hell episode. I had to get 3 epidural blocks to get rid of the risidual pain, maybe they are wearing off or something..tks..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 04-09-2008, 04:01 AM   #9
sarah
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hello,
I've had itching and rashes and even open sores (ave scars from that) since when I started chemo and Herceptin. I stopped chemo over 2 years ago, still on Herceptin and I still have periodic itching problems. besides benadryl type medicine when mine is really bad and I know I can't stop myself from scratching, I put calamine lotion on it and almost instantly I stop itching. when it's not bad, I tend to put creams on the skin to keep it moist. ask the pharmacy for some good cream for exzema because it's rather like that.
good luck, it's terrible but won't kill us!
hugs and love
sarah
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Old 04-09-2008, 01:28 PM   #10
rinaina
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Sherry, I was only on 2 mg of prednisone after trying everything else every doctor could think of. This was not enough to cause weight gain now any bad side effects and i wasn't on it that long each time. All I know is it worked and worked fast. I was so miserable before that. Good luck.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 04-14-2008, 08:30 PM   #11
Sherryg683
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Thanks all. My doctor gave me a cortisone shot (for an infection I have) and gave me a prednisone pack. Like I predicted, I'm itchy crazy again. He said this should help. No idea of why. I"ll put it down to stress or medications and hope it goes away quick...sherryg683
__________________
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 04-14-2008, 08:43 PM   #12
Bill
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I'm sorry I can't help with the itching thing. Nikki had some itching from Dexamethasone. Maybe a side effect of steroid meds.? Just wanted to say how much I like your new picture. Best wishes, Bill
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