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

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

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

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

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

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????

Re: Pericarditis Query
 

No advice to offer Marie but just adding my good wishes for a swift recovery.

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

Re: Pericarditis Query
 

The most common blood test is ANA. APS is another but not as relevant.

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

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.

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.

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

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

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.

Re: Pericarditis Query
 

Just catching up, Marie, hope you're feeling better!!

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