Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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01-05-2017, 08:17 PM
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#1
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Member
Join Date: Jan 2017
Posts: 6
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heart attack after chemo into hercetin only
hello everyone, i just got the guts to join.. diagnosed march 2016,mastectomy April, then 6 infusions tch.. i did ok . depleted but holding my own..then i took two more doses of herceptin , supposed to continue until July 2017 but Dec 19th, on my BIRTHDAY i had mild heart attack!!!.
now i am conflicted whether to continue more herceptin ( the cardio gave the green light, my onc is worried).. I AM WORRIED..
doctors say that the "usual" heart issue from herceptin is congestive heart failure which they watch with the (what is it called? sonogram ?)
so my heart attack is unusual as a side effect.. the angiogram showed no heart disease, blocks or cholesterol in arteries..so that's good.. so why would i have a heart attack?? seems logical its from the hercpetin...
any thoughts or facts??
have any of you long term survivors only taken 6 months of herceptin?? has anyone had a heart attack after or around chemo??
thanks
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01-05-2017, 09:00 PM
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#2
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: heart attack after chemo into hercetin only
Oh I am so sorry this happened to you. I don't have any facts or other info about Herceptin, hopefully someone else will see this and post.
I can certainly understand why you would be worried! Again, I am so sorry.
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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01-06-2017, 05:59 AM
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#3
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Senior Member
Join Date: May 2013
Posts: 570
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Re: heart attack after chemo into hercetin only
Welcome to the group. I'm sorry to hear you've had a heart attack. I really don't know enough to input. Your cardiologist knows about your heart and is aware of the medications you are on. Your oncologist likely is being ultra cautious. The best you could do is ask for a referral to a cardiac oncologist, someone who deals specifically and solely with cancer patients and heart issues. I have one and she has put me on some cardioprotective medications because I will be on Herceptin for a long, long, long time.
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Tracy Arcari
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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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01-06-2017, 03:08 PM
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#4
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Member
Join Date: Jan 2017
Posts: 6
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Re: heart attack after chemo into hercetin only
thank you for that..
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01-09-2017, 06:12 PM
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#5
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: heart attack after chemo into hercetin only
I seem to recall that there were studies done in Europe where Herceptin was given for 3, 6 and 9 month periods. If memory serves 6months was found to be as effective as 12. However, I do not know how the lesser time period stacked up long term. Google it. If true, then perhaps you will feel it wise to stop at 6months for the sake of your cardiac function.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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01-09-2017, 07:46 PM
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#6
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Member
Join Date: Jan 2017
Posts: 6
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Re: heart attack after chemo into hercetin only
i will ..thanks
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02-02-2017, 06:22 AM
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#7
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Member
Join Date: Aug 2016
Posts: 9
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Re: heart attack after chemo into hercetin only
It happened to me three weeks after my first and only infusion of Herceptin, on the day I was supposed to get my 2nd! You're right - it isn't like a "regular" heart attack when arteries are blocked and they have to use stents or surgery to provide a blood supply to the heart muscle. Instead, the left ventricle dilates and can't contract well. Google "Takotsubo Cardiomyopathy". The illustrations will show what happens to the LV. I can tell you what happens to a cardiologist's face when he realizes you're having this attack in his office......and it made me want to laugh and cry at the same time! I smiled, knowing that he truly cares and was extremely worried about me, but I saved my tears for later, knowing that this might limit my treatment options. The cardiac drugs like carvedilol and metoprolol which regulate heartbeat can help enormously. I have been told to rest for two weeks then we will all re-evaluate. I've read that we are allowed to have three of these "incidents" before we are pulled off Herceptin for good. I hope you do very well and can continue your treatments. Having had it happen so early in my treatment regimen is extremely worrisome, but I want to get as much Herceptin as I can. I'm so sorry you went through this too. I hope you can finish your regimen!
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02-03-2017, 10:51 AM
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#8
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Member
Join Date: Jan 2017
Posts: 6
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Re: heart attack after chemo into hercetin only
thank you for your info.. i am back on herceptin and trying to stay calm (:
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07-03-2018, 05:04 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: heart attack after chemo into hercetin only
When I was on Herceptin for 6 years, it was the left ventrical that concerned them and mine stayed good. However about 10 years after I stopped Herceptin I had a heart attack. It was due to the radiation I received and not Herceptin. Could this be what happened in your case or not?
If you ever have any chest pain, go to the emergency dept. immediately, better to be safe than sorry.
I carry (given by my cardiologist Natispray which is hydro-glycerine) and 2 aspirins in case of chest pains - not to be over used. Maybe ask your cardiologist if these might be helpful in case of a problem. The aspirin is to chew immediately upon having pain.
I am sure your cardiologist has you on some medicine which probably includes something like Kardegic, a powder aspirin.
I did have a stent put in. No big deal. I'd rather have a heart issue than cancer but that's me.
Hopefully your heart attack didn't destroy any heart muscle.
Glad you can go back on Herceptin - the miracle drug and because of that, you'll be having regular sonograms for the heart anyway and that's good.
hugs and love
sarah
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