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01-20-2019, 07:42 PM
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#1
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Pericarditis Query
Hi all!
I've had an 'interesting' time recently to say the least. I was hospitalised three times in December. I developed Pericarditis and spent six days in the cardiac ward, then a week later it developed into cardiac tamponade (what I later discovered is a very dangerous condition with fluid build up in the pericardium). About 700ml was drained and tested, as it appeared to be malignant. However, all the cytology reports came back as non malignant. I spent five days in an acute cardiac ward that time. (And the third time was a couple of days in the cardiac ward as there was a problem with a heart med, which was quickly fixed).
I've had loads of tests done, and they continue, trying to get to the bottom of why the pericarditis occurred. My cardiologist is leaning towards it being related to Kadcyla (and Herceptin) - I've been on Kadcyla for nearly a year now, and previous to that was on Herceptin for about 9 years. It seems Pericarditis is a very uncommon side affect of these drugs. My oncologist will be talking to Roche about this. I'm currently on a break from Kadcyla (cancer is stable currently) as I'm not sufficiently strong enough to have treatment. The hospital cardiology team stated that sometimes there is no obvious reason. However I've read studies, and read on some old threads here, that radiation injury particularly to the left side can be a cause - I had radiation 18 years ago on the left breast, and targeted lung radiation about three years ago. (I also have quite a bit of fluid on my left lung which will probably be effused soon).
I'm just wondering if anyone here has had pericarditis (and/or cardiac tamponade), and what was the cause if known? I don't want to stop Kadcyla as it works for me and my LVEF is fine sitting around the 56-60 mark.
I'm very grateful that it's now 18 years since original diagnosis, and 11 years stage IV, but 2018 was tough with some unusual complications presenting.
Thanks in advance for any information.
Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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01-20-2019, 08:33 PM
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#2
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Pericarditis Query
Hi Marie!
I am so sorry you've been having such a rough time. I don't have any advice but hopefully someone who knows alot more than I do will jump on soon.
Hoping 2019 is a better year for you!
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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01-20-2019, 11:08 PM
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#3
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: Pericarditis Query
Technically the word Pericarditis (the itis part) implies some kind of infection. I know the anti Her2neu drugs can affect heart function but they wouldnt cause an infection unless the side effect was neutropenia. Kadcyla could possibly cause neutropenia. Are you sure it is pericarditis?
Paul
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01-21-2019, 12:36 AM
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#4
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Pericarditis Query
Thanks for your thoughts Carol Ann!
And Paul, thanks for your input. That's interesting. I'm being treated with medication standard for pericarditis, ie. ibuprofen, colchicine which is standard for inflammation in pericardium. However, that's interesting re neutropenia because for the week or so before my first hospital stay as the symptoms were getting worse, I was getting high temperatures. And for two of my stays in hospital I was experiencing high temperature. But would that account for the fluid build-up in the pericardium?
Also the cardiologists could hear what they call the pericardium 'rub'.
They are currently testing my blood for auto-immune diseases - I see online that there could be a connection with neutropenia and auto-immune disease? Is that right?
Cheers Marie
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01-21-2019, 12:40 PM
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#5
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: Pericarditis Query
Marie
Ill research pericarditis but I do have a question that popped into my mind.
As a child did you ever have a problem with rheumatic fever. I remember in my last year of
Pharmacy school I did a pediatrics rotation. They used to give the kids a shot of Benzathine penicillin each month. This stuff is thick and judging by the noise from the treatment rooms
the benzathine penicillin shots probably were no fun to get
Paul
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01-21-2019, 12:59 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Pericarditis Query
Oddly, I was going to ask about auto immune disease or an allergic sensitivity to the herceptin or herceptin part of kadcyla. My daughter has lupus. Twice she has gotten pericarditis when having a bad cold or even a super huge allergy attack. I understand your concern and fear. I am thinking of some kind of immune response here more than the more common effects of monoclonal antibodies. Is the fever you had a response to a true invader (virus or bacteria)? Or to a drug, food etc. My daughter gets a fever during a flare and her joints are the most affected for her. We know she will have alot of pain cuz there is an attack going on Either way you body over responded and got your pericardium involved. You might doubt a food sensitivity but they can come on quick especially when having treatment. For example, no more gluten, soy, corn or anchovies for my dear daughter. Didn't cure anything but .... Sound immuno to me but I m just trying to give you ideas to explore. Immuno response to true invader, herceptin/Kadcyla, food etc????
__________________
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
Prolia every 6 months for osteopenia
NED 18 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"
Last edited by Becky; 01-21-2019 at 01:04 PM..
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01-21-2019, 03:12 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Pericarditis Query
No advice to offer Marie but just adding my good wishes for a swift recovery.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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01-21-2019, 05:18 PM
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#8
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Pericarditis Query
Wow - thanks for the responses so far and good wishes!
Paul, no I never had rheumatic fever as a child. Thanks for looking into this for me.
Becky, I'm sorry your daughter has to suffer with pericarditis. It certainly is not pleasant. But your comment was very interesting. Tests indicated it was not viral or bacterial, but something was making my temperature spike - usually in the evening after eating.....
I was very run down in the last half of 2018, starting with pneumonia which put me in hospital in August, and I never really fully recovered after that, and I lost a lot of muscle and weight, particularly after they discovered that my duodenum was very ulcerated and bleeding, caused by radiation at the end of 2017 on a lymph node in my abdomen region.
I'll let my oncologist know about possible food allergies too, and hopefully will hear soon about the tests for auto immune diseases.
Cheers Marie
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01-21-2019, 07:46 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Pericarditis Query
The most common blood test is ANA. APS is another but not as relevant.
__________________
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
Prolia every 6 months for osteopenia
NED 18 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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01-25-2019, 05:52 PM
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#10
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Pericarditis Query
Hi again all!
I thought I'd let you know, particularly you Becky, that I tested positive for an autoimmune disease with the ANA test. There were other blood tests which also tested strongly for autoimmune disease. So I'll be off to see a rheumatologist ASAP, to work out which particular type I have and hopefully commence treatment. My cardiologist is quite convinced now that autoimmune disease is the cause of the pericarditis and subsequent cardiac tamponade.
My oncologist also had discussions with Roche re Kadcyla, and they said that from everything they know, it wouldn't cause pericarditis. So hopefully, I'll be safe to start again on it. My LVEF and heart in general is very good.
Cheers Marie
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01-25-2019, 07:54 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Pericarditis Query
Knowledge is power to get well. I am so glad I was able to help. It will improve. You might need Prednisone but discuss Omega 3 and turmeric with your doc. You might also discuss daily aspirin or ibuprofen. We are here for you.
__________________
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
Prolia every 6 months for osteopenia
NED 18 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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01-26-2019, 11:13 AM
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#12
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Pericarditis Query
Colchicine is effective for pericarditis --it is a drug used for centuries, but a few decades ago they judged it as a drug so old it had not passed the safe & effective standards of the times, so, no-one wanted to pay for such studies and now, as I understand it, only 2 companies make it and it is rarely covered by insurance in US.
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01-26-2019, 12:03 PM
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#13
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: Pericarditis Query
Lani
I had no idea of this. Colchicine comes from a plant, the meadow saffron. Colchis was the old name for the area of Russia known as Georgia (the south part bordering on the black sea where the city of Sochi is.
The old use for colchicine was for gout which is a painful arthritis usually in the big toe. Gout occurs when the uric acid levels are too high and the uric acid deposits in the joint of the big toe. It is so effective against gout that drs would use Coilchicine to diagnose gout. If the pain was relieved through the use of the typical Colchicne dosing the pain was due to gout. This goes back to ancient times. Naturally the drug wasnt FDA approved because I dont think the FDA had as much power in 2000BC as it has now. I guess the FDA is demanding that we "prove" that Colchicine is safe and effective. It is effective in gout buut the drug has toxicity so I dont know about safe but if used correctly it can be made safe. The gout patient was dosed with say 0.6mg Colchicine evey hour until pain was relieved or the patient got diarrhea. Usually the pain of gout was relieved before the diarrhea ensued.
Although gout is a disease of excess uric acid Colchicine has no effect on uric acid levels a ssay, Allopurinol does. Colchicine attacks the white blood cells that are ingesting the uric acid particles that have been deposited into the joint. When the white cells attack the uric acid particles inflammatory chemicals are released and this causes the joint pain of gout which may be severe.
Actually Colchicine acts more like a cancer chemo drug than anything else. Remember in high school when they wanted to show mitosis or cell division? They would incubate growing onions with Colchicine and the onion cells would be have their mitotic ability stopped at metaphase and under the microscope you can see the onion cell chromosomes clearly separating during cell division.
It is the chemo like action of Colchicine that makes it so valuable in other conditions like the Pericarditis mentioned. I used to dispense it when I had my own pharmacy often.
It was quite cheap in 1987. I cant believe they are restricting the use of this old but very valuable drug. Medicine has dropped a lot of the science and replaced it with politics. Sad.
Paul
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01-26-2019, 05:25 PM
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#14
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Pericarditis Query
I was put on colchicine when I was admitted to hospital the first time in early December, and I remain on it still. Here in Australia, it's standard treatment, together with ibubrofen and diuretics (if fluid has built up) until it is worked out what has caused the pericarditis. (I think that's how the hospital cardiologists described the protocol). So treating the inflammation. Hopefully now when I see a rheumatologist they will be able to fine tune the treatment. Colchicine is listed on the Pharmaceutical Benefits Scheme in Australia, so is inexpensive and available to all on prescription.
There was an interesting story in the Sydney Morning Herald yesterday re research now being undertaken in Sydney and Adelaide on the possible benefit of Colchicine and decreasing the risk of heart attack and stroke, and the story is based on the link of autoimmune diseases with heart disease. Here is the story:
https://www.smh.com.au/national/why-...22-p50su8.html
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01-27-2019, 08:01 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Pericarditis Query
Hello Bunty,
I had chest pains while on Herceptin and I was told I had pericarditis which I solved with ibuprofen. I had it again and had a cardologist that gave me Colchicine.
I have had many heart problems including a heart attack since having radiation for breast cancer.
__________________
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02-04-2019, 07:56 PM
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#16
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Pericarditis Query
Just catching up, Marie, hope you're feeling better!!
__________________
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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02-05-2019, 12:38 AM
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#17
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: Pericarditis Query
11 years, Marie! Sorry to hear about the latest complications. Almost ironic that some of us may end up less worried about cancer than about other (maybe) unrelated issues. Wishing you clear insight into your current situation and less interesting times.
Best wishes from Melbourne..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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