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Old 12-02-2015, 04:17 PM   #1
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Posts: 52
Unhappy 50 hours post TCH chemo and my body feels like going through withdrawals

I don't know if that's what it is, if it is, if it's withdrawing from steriods, benadryl, etc. I'm so uncomfortable but everything else, knock on wood, has been fine so far. I had my Neulasta auto injector about 23 hours ago. I just don't know what to do to ease myself and settle down. I feel fatigued but can't rest, I feel like I'm 'tweeking', almost itchy. Anyone else had this? Any advice? Please, please help!
6/6/2015-Found a lump in my L breast at 45 years young.
6/12/2015-First u/s
7/2015-Mammogram and 2nd u/s (same day)
8/7/2015-Needle aspiration u/s biopsy. Doctor indicated looked malignant. (thanks doc!! the wait after that sucked)
8/20/2015-Diagnosed w ER+,PR+,HER2+ BC in L breast (now 46 years young.)
9/24/2015-Saw first surgeon, referred by oncologist. Great guy. Office staff not advocates.
10/12/2015-Met w Plastic Surgeon. Amazing doctor. Recommended not immediate due to chemo and 'just get the cancer out first' attitude. Will do recon with him after chemo is complete.
10/12/2015-Called first surgeon's office who told me that it's been too long since the first consult and will need to schedule another consult on 10/24 and then schedule surgery within 2-3 AFTER that date. (BITE ME)
10/12-Found a new surgeon.
10/15-Consulted with new FEMALE surgeon. She was AMAZING! Asked me if I wanted to do the surgery on Monday (in 5 days). Stunned and thrilled!!
10/26/15-Surgery for bilateral mastectomy, port placed, and 3 nodes removed for SNB. 3 drains installed.
10/28/15-home from the hospital to recover.
10/30/2015-Follow up with surgeon. Drains removed. Was told tumor was removed but had more than doubled in size from 1.3 to 2.9cm. 3 nodes removed, all negative. Healthy breast was clear but several suspicious areas on affected left breast. Looks to be Stage 2A. Oncologist appt next week.
11/5/2015-Follow up with oncologist. Planning to start chemotherapy (Herceptin, Taxotere, and Carboplatin together beginning November 30th). Very nervous about side effects, low white blood count, anemia, steriods, etc, etc, etc. I'm not usually one to medicate myself for anything. Not ready for this. Kinda scared.
11/30/2015 - Isaiah 41:10 today for sure. Today was my first day (round) of TCH chemo treatment. Before receiving the cocktail, I saw the doctor who delivered the news that my CT scans (abdomen, chest, and pelvis were all clear). Praise God!! Feeling okay right now after chemo, just a bit sleepy. We'll see how the Neulasta, along with the other effects, rear their lovely heads over the next few days. Prayers please, as always.
12/17/2015-Decided it was time to shave my head and face the music.
1/11/2016-Went in for 3rd treatment. UGG. Spoke to the doctor first. Asked him to reduce the Decadron. Agreed! From 10mg to 4mg dosage. YAY! It still worked and I was able to rest and live. Praise God. I jokingly told him if he felt like dropping some of my treatment, to feel free. Guess what?! He agreed! Agreed to drop my 6th treatment meaning that I now only have 2 left and in March I'll be able to begin the reconstruction process. Additionally, he agreed to schedule me for a brain MRI to just double check for any spread. Anxiously awaiting.
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Old 12-02-2015, 06:46 PM   #2
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

It is probably the steroids ... call the doc's office in the am and tell them what you are experiencing, and if they can give you anything for it. You just overwhelmed your body with poison, and everybody reacts differently. I had horrible indigestion from the taxotere and bone pain from the Neulasta, but I don't remember feeling what you describe. And yes, the steroids would keep me up at night alot.

One down!! YAY Every day is one day closer to the end of chemo!!

Carol Ann
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 12-02-2015, 09:46 PM   #3
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

I think Carol Ann is right about this being from the steroids. My onc have me lorazepam and it took care of the "tweeking" feeling and allowed me to sleep.

Hang in there. One down and on your way to NED!
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 12-03-2015, 04:30 AM   #4
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Join Date: May 2013
Posts: 568
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

I would guess that would be your steroids. I usually can tone that effect down a bit with Ativan. I used to take Claratin the day before and for several days after my neulasta injection. I never had any associated side effects from it using that protocol.

Certainly check in with your team and make note of symptoms so you can be prepared for the next round. Hope you are feeling better soon.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 12-03-2015, 05:44 AM   #5
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Location: Stockton, NJ
Posts: 4,153
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

It's the steroids absolutely. It will pass and then you'll be exhausted from lack of sleep. And I think your description of "withdrawal" is exactly right as you are withdrawing from the steroids.
Kind regards


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

NED 15 years!

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 12-03-2015, 02:58 PM   #6
Donna H
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Join Date: May 2014
Posts: 253
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

After my first TCH I barely slept for 3 nites. Then I crashed - slept and slept some more. It got better with the next treatments. It's a tough road but you are stronger than you know.
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Old 12-03-2015, 03:46 PM   #7
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Location: Iowa
Posts: 4
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

It's the carboplatin. I felt that way too. As if I had to move my legs and arm (especially legs)all the time. Not quite itching but kind of combo of itching/tingling/burning. Felt it in my side's too when laying in side. Went away after 4th day.
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Old 12-03-2015, 08:20 PM   #8
suzan w
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Location: Naples FL
Posts: 1,744
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

I, too, think it is the steroids. I couldn't sleep for days, talked my head off(!) and felt like I was on speed...when I crashed, I couldn't stop crying...felt emotionally drained, and had NO energy. I rode this roller coaster the whole time I was on chemo.
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 12-04-2015, 03:44 PM   #9
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Location: California
Posts: 424
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

This indeed sounds like a side effect of the steroids. I felt exactly what you are expressing. The only thing that helped me was at night I would at doctors orders take 2mg Ativan to help with sleep. At one point I was up for 38 hours straight and it was horrible . Sleeping pills didn't work. As for what to do with it during the day maybe try some soothing music in a quiet room. While I was as on the steroids it was as if my mind was going in 20 different directions at the same time but oh my body just wanted to rest. The frustration of this can become very difficult and depressing to deal with. I wish you the best and please just think this is a temporary problem.
11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
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Old 12-04-2015, 07:13 PM   #10
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Join Date: Jan 2013
Location: 'Burbs of Atlanta, GA
Posts: 167
Re: 50 hours post TCH chemo and my body feels like going through withdrawals

When I was going through chemo (TCH), on around Day 7, I was still an absolute mess - stiffness - felt like I had the flu, nausea, no appetite, etc. I went in and had an IV of fluids- it made the biggest difference in recovering from the chemo. Even though I was trying to drink fluids, having the fluids directly helped tremendously.
[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 7 Years Out!! - December, 2019
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