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08-16-2014, 11:30 AM
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#1
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Member
Join Date: Jul 2014
Posts: 19
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Just Herceptin and Perjeta - side effects
I'm on neo adjuvant TCHP, but some women at my cancer site are being now offered Perjeta along with their Herceptin. Has anyone done this and what are their side effects. Ideally, would be someone who had been on just Herceptin, and now is on Herceptin plus Perjeta, as that would give me an idea what the addition of Perjeta does. Also, yes, I do know what are the documented side effects.
__________________
5/24/14 Found by getting a crumb out of my bra.
5/30/14 Doctor couldn't find it, until I put her finger on it, ordered a Dx Mammo
6/3/14 US core biopsy and marker
6/4/14 Dx IDC 1.5cm
6/5/14 ER+ PR+
6/6/14 met breast surgeon
6/10/14 chest X-ray, clear; blood panel, clear
6/12/14 MRI - now sized at 2-3cm
6/11/14 HER2 overexpression
6/19/14 Saw plastic surgeon, will do skin sparing
6/26/14 BRACA new 2014 guidelines BRACA can be run for adopted
6/20 - 7/7 Lots of different ideas, saw 3 oncologists, changed from mastectomy to Neoadjuvant chemo. with Perjetta
7/16/14 Chemo Cycle 1 of 6; TCHP
12/2/2014 Skin sparing BMx, with TEs, SNB
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08-16-2014, 12:08 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Just Herceptin and Perjeta - side effects
After adding in perjeta, my biggest side effect was diarrhea. I also had flu like symptoms for a few days after infusion ( fatigue, achy, headache )
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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08-16-2014, 08:10 PM
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#3
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Just Herceptin and Perjeta - side effects
I've done Herceptin and Perjeta for a year now. My #1 side effect is it made me NED. 
My #2 side effect is it affects my blood. I'm anemic - my reds can go down to 9.4 and my whites go down too, to about 1.5. They usually go up after 2 weeks or so. My nose runs too but I was on Herceptin alone for a while and that is a common issue for herceptin.
It is VERY easy to take, not like a chemo at all. No baldness, no stomach issues (at least for me and everybody else I know who is on it, but as you can see above, it is not impossible to have an issue. I do get a bit achy but it's mild and certainly not enough to make me complain.
We are all different, but I could live on this combination forever. We'll see what happens in the next year but my oncologist also said he might take me off if I stay NED. Being off everything would make me very nervous after all I've been through but he says it's such a new drug nobody knows long term side effects.
I also get Zometa, once a month. That one is also easy although the first infusion causes bone aches and headaches but it goes away. My first infusion was 4 1/2 years ago.
Congratulations on starting a treatment who has been very, very successful for many people. I hope you are one of them and like me, you become NED.
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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08-19-2014, 07:42 AM
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#4
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: Just Herceptin and Perjeta - side effects
I had one dose of Herceptin and Perjeta alone after I finished chemo a before I had surgery. I had a lot of muscle cr amount and pain coming off of TCHP and when I got that HP dose it made my feel more achey for 24 hours and then it backed off.
I had my first Herceptin dose last week and the only thing I noticed was that the vein where my port enters was irritated, something that I noticed after chemo infusions as well.
CoolBreeze I find you comment about the MABs (monoclonal antibodies) on your blood to be interesting My white blood cells dropped twice in the past 6 weeks since finishing chemo, and my red counts are slowly creeping back. My Chinese medicine doctor switched me off of a blood formula at the end of chemo though so I'm not sure if that is why my counts declined -- during chemo they bumped up after I started these particular herbs after round 2. My MO was a bit concerned about it so I'm going to be watched
A friend of my father who has been practicing in oncology for over 50 years saw my blood labs yesterday and said that takes around 2-3 months for your blood to recover and that most people do. It was freaking me out. We will see...
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08-19-2014, 07:40 PM
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#5
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Just Herceptin and Perjeta - side effects
Quote:
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A friend of my father who has been practicing in oncology for over 50 years saw my blood labs yesterday and said that takes around 2-3 months for your blood to recover and that most people do. It was freaking me out. We will see...
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It seems that if I get three whole weeks between any treatment, my blood does rise although it's always a bit low. But the way I get treatment is I get one every three weeks and one every month, and that means I frequently have periods of weekly treatment, if that makes sense.
Recently I had the three week period and it was actually normal for the first time in five years! My grans were 2.5 and my hemoglobin was 11.5.
But it dropped again with the next tx.
Anemia and low whites is a known side effect of Perjeta so I'm not surprised. With all the treatment I've had it's to be expected.
The only issue is that now the anemia is acute and I get SO tired. I had my therapy two weeks ago Wednesday, and I was feeling okay. Then the following Wednesday I had Zometa and they did a CBC and my blood had dropped an entire point in everything. Now this week, I've spent a couple days in bed, just tired. So I'm guessing it continued to drop and is back down in the 9s again. Having five years of treatment, I'm sure my marrow is quite stressed.
I also haven't had a MUGA since January - just sort of an overlook. SO I should have that soon. Hopefully, this exhaustion is blood and not heart. I think it is blood since I do recover. However, anybody on Perjeta/Herceptin needs to keep track of your heart monitoring. I don't rely on my doctor to do it (because I now am healthy enough to only see him every 2 months) and so I consider the fact that it's gone this far my fault.
Just a tip - nobody will care as much about your health as you do so keep track of these things. Even if your medical team is always on the ball, it is good for you to know.
Hope everybody is doing well. I keep having people writing me and telling me that Perjeta/Herceptin is doing for them what it's done for me - making them NED. It's a very exciting time to be HER2+ - of course, only if you respond to the drugs out there. But they seem to have cracked the code and are coming up with new things all the time.
__________________
http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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08-20-2014, 12:02 PM
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#6
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Just Herceptin and Perjeta - side effects
I've been on just Herceptin and Perjeta. My major side effect is diarrhea. I also get hot flashes, some nose bleeds, occasional pimple-like skin bumps, and cramps in my feet and calves. The cramps could be leftover neuropathy from chemo, though. My nose and eyes have dripped (off and on) the whole time I've been in treatment. I've never had any heart issues.
I find it very easy to take--hardly noticeable. It hasn't been studied without added chemo, so most of the Perjeta side effects you read are actually attributable to whatever chemo drug is being given with it.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-09-2015, 04:44 PM
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#7
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: Just Herceptin and Perjeta - side effects
Has anyone had an allergic reaction to Perjeta? One treatment and I am back to Herceptin only. Had some serious breathing issues and am now going in for a CT of my lungs and a Muga for the heart. My onc says no Perjeta until they figure out what's going on. Just thought I would ask if anyone else had issues with this new drug. Also was allergic to Tykerb but thankfully Herceptin alone has kept me NED for over 5 years now so fingers crossed that it keeps on working :-)
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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04-10-2015, 09:25 AM
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#8
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Just Herceptin and Perjeta - side effects
I've been on Herceptin and Perjeta for a few months - I agree very easy to take. Some diarrhea but nothing Imodium cant handle. Wishing everybody wellness!
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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04-10-2015, 08:13 PM
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#9
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Member
Join Date: Jan 2011
Location: Colorado Springs, Colorado
Posts: 18
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Re: Just Herceptin and Perjeta - side effects
I've been on Herceptin and added Perjeta in January 2015. I've had lung mets since 2011, but it's just in the last three months that I'm coughing a lot and experiencing shortness of breath with mild exertion. PET/CT scan from Jan to March shows progression, so I am going to start Abraxane & see if that wacks back some of the lung tumors.I tolerate the Herceptin & Perjeta combo pretty well. I had a painful muscle spasm this morning in my foot/calf, not sure what that's about..... I'm waiting for treatment that works with immunotherapy as in a vaccine.
__________________
2005: DCIS Stage 0, Right breast, High grade, lumpectomy, radiation, no mastectomy 2009: Diagnosed Her2 new+++, Herceptin only (toxic reaction to Taxotere). Great response to Herceptin 2011 lung mets 2012 tried several targeted chemos- none worked
2013 TDM1- good job resolving some lung mets 2014 Took a treatment break, Oct. Allergic reaction to Doxil 2015 Herceptin & Perjeta
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04-11-2015, 05:06 PM
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#10
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Senior Member
Join Date: Jan 2015
Location: Manhasset NY
Posts: 56
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Re: Just Herceptin and Perjeta - side effects
I take Herceptin and Perjeta. Breaking out like a teenager and oddly enough, I get muscle spasms in my feet almost every night. I thought it was from wearing flats so I started wearing more heels. Then I can't remember if I had them that night. Oy!
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04-11-2015, 06:18 PM
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#11
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: Just Herceptin and Perjeta - side effects
Interesting! I get those cramps too, in my lower legs and sometimes even in my thighs! I thought it's lack of Magnesium, so started taking that but so far no change... Maybe I should try high heels instead of the silly magnesium pills! A lot more enticing than the pills for sure! Will check with my (new) Oncologist whom I should meet end of April (old one went on mat leave...) to see whether he has heard of this before.
__________________
Annette
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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04-12-2015, 11:07 AM
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#12
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Just Herceptin and Perjeta - side effects
My theory on cramps is they're a symptom of neuropathy. A friend told me that the way to stop one is to STAND on the foot/leg that's cramping. I hate getting out of bed to do that, but it's the fastest way to get them to go away and get back to sleep.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-13-2015, 04:44 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Maryland
Posts: 30
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Re: Just Herceptin and Perjeta - side effects
In April 2014, I was started on Herceptin, Perjeta and Taxotere. Taxotere was discontinued in late-September 2014 and I remain on H & P.
Last Friday, my ANCs (under 1000), WBCs, RBCs and platelets were all quite low and I was started on Neupogen injections. Is anyone else having this issue with Herceptin and Perjeta in combination? Please let me know.
Up until last week, the biggest side effect has been diarrhea. Lomotil has been a great help and it has stopped my weight loss. Other side effects include cramping, chills, headaches and pain at the tumor sites. Neuropathy is a big issue, but it is due to having different chemo cocktails since 2004.
__________________
Margo
Diagnosed 08/2004 @ 45; Metaplastic Breast Cancer (MpBC)
Stage IV, HER2 3+, ER-/PR-, Met to Liver
08/2004 - Neo-adjuvant Taxotere/Carboplatin/Herceptin (TCH) - 4 rounds.
09/2004 - Herceptin - Weekly.
11/2004 - Liver RFA, followed w/TCH - 2 rounds.
12/2004 - Lumpectomy, axillary node dissection, followed w/TCH - 2 rounds.
05/2005 - Radiation - Breast, shoulder, neck (left side) - 35X
09/2005 - Developed severe osteoporosis - Boniva - monthly
04/2008 - Herceptin - Every 3 weeks (changed from weekly).
05/2012 - Mets: 3 new liver and 2 lymph nodes.
06/2012 - Start 16 rounds Navelbine and Herceptin weekly.
11/2012 - Liver resection, RFAs (8), lymphadenectomy (2), cholecystectomy.
12/2012 - Herceptin and Letrozole.
05/2014 - Mets: 5 aortocaval nodes & 1 mesenteric.
06/2014 - Herceptin/Perjeta/Taxotere - 6 rounds.
10/2014 - Herceptin / Perjeta - Open ended
04/2015 - Progression: Porta hepatic node, 2 aortocaval nodes.
05/2015 - Exploratory surgery treating progression, 12 nodes removed.
07/2015 - Restart Herceptin / Perjeta
01/2016 - Progression 8 nodes.
02/2016 - Starting T-DM1 (Kadcyla) - Open ended.
07/2017 - Progression.
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04-13-2015, 06:29 PM
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#14
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Member
Join Date: Jan 2011
Location: Colorado Springs, Colorado
Posts: 18
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Re: Just Herceptin and Perjeta - side effects
My lungs have gotten a lot worse since I started Perjeta three months ago......my onco has not suggested Perjeta might be implicated......I wonder......Looking at trying Abraxane in two weeks......
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2005: DCIS Stage 0, Right breast, High grade, lumpectomy, radiation, no mastectomy 2009: Diagnosed Her2 new+++, Herceptin only (toxic reaction to Taxotere). Great response to Herceptin 2011 lung mets 2012 tried several targeted chemos- none worked
2013 TDM1- good job resolving some lung mets 2014 Took a treatment break, Oct. Allergic reaction to Doxil 2015 Herceptin & Perjeta
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04-13-2015, 08:25 PM
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#15
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: Just Herceptin and Perjeta - side effects
I had a pretty severe lung reaction after my first infusion of Perjeta and my onc is viewing that as an allergic reaction. CT Scan showed no blood clot on my lungs so I will just be going back to Herceptin only which has kept me in remission for 5+ years now. I also had the same type of allergic reaction to Tykerb. I'm just hoping the Herceptin continues to work as well as it has and that other options become available should I need them down the road. There are some types of lung reactions associated with Perjeta I believe, but those who have been on it for awhile should respond if they are having issues. Mine were within a couple of days after receiving the initial Perjeta infusion.
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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04-14-2015, 07:16 AM
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#16
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Member
Join Date: Jan 2011
Location: Colorado Springs, Colorado
Posts: 18
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Re: Just Herceptin and Perjeta - side effects
thanks Debbie-- That is helpful information.
__________________
2005: DCIS Stage 0, Right breast, High grade, lumpectomy, radiation, no mastectomy 2009: Diagnosed Her2 new+++, Herceptin only (toxic reaction to Taxotere). Great response to Herceptin 2011 lung mets 2012 tried several targeted chemos- none worked
2013 TDM1- good job resolving some lung mets 2014 Took a treatment break, Oct. Allergic reaction to Doxil 2015 Herceptin & Perjeta
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