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Old 09-23-2011, 06:01 AM   #1
chekmark
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Herceptin hangover

OK ladies and gents need some advice. Yesterday was my 15th of 18 herceptin treatments and today I feel like I was hit by a mac truck. When I stood up to leave yesterday after treatment my joint pain was the worst it has ever been. I have been having the joint pain for several months but thought it was the femara. Have a headache and just feel like I have a hangover. (At least what I remember of a hangover many many years ago). Anyone else experience this? I have some swollen fingers as well. My blood pressure which has always been normal is starting to go up. Femara related I am told. Just was wondering if anyone noticed that as time goes on the herceptin gets alittle more uncomfortable, although tolerable. Thanks in advance for your replies.
God bless. Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 09-23-2011, 09:47 AM   #2
NEDenise
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Re: Herceptin hangover

Hmmm...
Darlene, this is interesting. I've been having trouble with swollen fingers and joint pain, and I am NOT on Femara. I'm not on anything except Herceptin.
My doc tells me that my pain is left over from Taxol.
It will be interesting to see who else replies to your post.
Are you taking anything for the pain and swelling?
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-23-2011, 10:49 AM   #3
ElaineM
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Wink Re: Herceptin hangover

Yes. Herceptin can cause increasing tiredness, joint pains and affect blood pressure the longer one is on it.
It is funny that when Herceptin came out doctors thought the only possible side effect was a possible reduction in the LVF. You might want to go to
www.herceptin.com and look up the side effects or call Genetech and speak to a pharmacist/scientist. Most drug companies, including Genetech have people to talk to patients about possible side effects and problems. They often know more than doctors and nurses know.
Look for the toll free phone number on the Herceptin or the Genetech website.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
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Old 09-23-2011, 10:54 AM   #4
NEDenise
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Re: Herceptin hangover

Elaine
Thanks for the tip. I think I'll do that!
Have a great day!!
Be well!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-23-2011, 12:23 PM   #5
Kellennea
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Re: Herceptin hangover

I have 2 more herceptin treatment left (yay) and my fingers usually swell up for about 2 -3 days after. I also have joint pain, but I am told that it is either left over from chemo or from Tamoxifen. I recently started doing yoga again to try and loosen by body up a bit... it's pretty painful to do but I feel like if I don't the pain will just get worse.
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10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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Old 09-23-2011, 03:09 PM   #6
Becky
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Re: Herceptin hangover

I had Herceptin alone and I started about 4.5 months after chemo was concluded. The first infusion I had such a headache the next day - just dreadful. I did get headaches with subsequent treatments but they weren't as bad. I didn't have finger swelling but my nails were off - not quite right.
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Kind regards

Becky

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
Zometa every 6 months for osteopenia

NED 13 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 09-24-2011, 07:58 AM   #7
NEDenise
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Re: Herceptin hangover

Hello, again, Everyone,
I called the "Herceptin Help Line".
The lovely nurse, Elizabeth, spent nearly a half hour chatting with me and searching through the clinical trial data. The only thing she could find was "swelling of extremities" in about 4% of the trial participants. There was no specific mention of pain being associated with the swelling, but that doesn't mean it wasn't present.
So...I don't think we're any further along in our quest for an answer.
In the meantime, the increased dose of Neurontin seems to be helping me.
I hope you all find something that helps you too.
Stay strong!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-25-2011, 08:21 AM   #8
chekmark
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Re: Herceptin hangover

Thanks Denise for making that phone call. I felt really good saturday and then all at once was very tired. This didn't even really happen to me while on chemo.I am just hoping that it is just from the the changes my body has had to endure this past year and nothing serious. I have done some reading on the femara and it sounds like alot of it could be from that. There has a been alot of added stress with a newphew passing away at 32 and had to put 2 dogs down in 3 months. Maybe my body is just telling me to slow down and not push myself so hard. I just try to live like I never had cancer and maybe I should take a day and say ok you had cancer so take it easy today. Key word, HAD cancer. Keep me posted on how you are doing. Stay strong. God bless. Darlene
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 09-25-2011, 09:14 AM   #9
NEDenise
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Location: Philly Suburbs
Posts: 1,709
Re: Herceptin hangover

Darlene,
I'm so sorry for the losses you've suffered. Sort of puts cancer treatment in perspective, doesn't it.
I'll be praying that your happy memories will help soothe the sorrow you must be feeling.
Rest when you need it...be good to yourself.
You are certainly a survivor, in the truest sense of the word!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-25-2011, 08:12 PM   #10
Pray
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Re: Herceptin hangover

Darlene,

I also am so sorry for your loss! Gods blessings to you and your family. Please know that you are in my prayers.

Your friend,

Nancy
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 02-28-2013, 01:00 PM   #11
stayingstrong
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Re: Herceptin hangover

I know this is an old thread but I was somewhat happy to see it considering I have been feeling so much of what you ladies mention. In addition to feeling tired, joint and bone pain, starting to have what appears to be arthritis in one finger (I'm only 46 and never had any signs of arthritis or bone and joint issues) and stomach issues with each successive herceptin infusion (I have had 13 so far), I've noticed that I'm just more down and not myself for the week following, then I start feeling a bit better as the next two weeks progress just to have another treatment and start it over again. Does anyone else experience that?
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Old 05-12-2013, 01:05 AM   #12
Relieved
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Smile Re: Herceptin hangover

Hello
This is my first posting, but have been reading the site for months looking for an answer to the terrible joint pain I have been experiencing. I finished chemo 10 months ago, then finished my ongoing 3 weekly Herceptin 3 months ago. Over the last 6 months I have been having increasing joint pain, and associated swelling of joints...particularly the small joints in my fingers. My oncologists swore it was not the Herceptin causing the pain, and I was repeatedly tested for arthritis and similar problems ,all returning negative. One physiotherapist, and my pharmacist both mentioned the possibility that it could be Oestrogen deficiency, and although my Oncologist agreed that was a possibility, I was told there was "no way" I could go back on Hormone replacement therapy.
After reaching the stage that I thought I would need to have a regular carer come to my home ( I was so "disabled" ) the doctors finally agreed to recommencing HRT. One month later I am almost back to normal.

My cancer was very early HER2+. When I was diagnosed my general practitioner took me straight off HRT, and I started chemo immediately (Taxotere, Carboplatin,) with Herceptin every 3 weeks. Apparently the problem was the combination of coming off HRT and having chemo at the same time.
I am so very happy now that I am getting back to normal, and i thought I would let others know, that for me there was (at last) an answer (with a slightly increased risk of another cancer).
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