Cancer with APS

[msins]

I’ve been diagnosed with pancreatic cancer. I also have AFib. The oncologist is suggesting chemo plus the Whipple surgery. How dangerous is all of this when you have APS. I also have COPD. I feel that this will be the end of my life. Last year I had my aorta valve replaced by the TVAR method. Info that I got from this site was very helpful in my preparation for surgery. Looking for help again.

[lupus-support1 Administrator]

I am very sorry to read your news. I can’t offer anything other than wishing for you a positive outcome.

With good wishes & prayers for a complete recovery.

Ros

[MaryF Administrator]

Hi, I am sending you lots of hugs and suggesting that you contact your main Hughes Syndrome/APS specialist, it is vital that they are in communication with your Oncologist to make sure you have the safest and reliable procedure and outcome. MaryF

[KellyInTexas Administrator]

Oh this must be devestating and overwhelming news.

What a trooper !

I’m currently a passenger in a bumpy ride between Texas and New Mexico- so forgive typos - and motion sickness might kick in so I’ll be quick but I want to quickly say-

1. I think it may be possible to switch from warfarin to LMWH but it needs to be twice daily at 1 mg per kg for APS patients.

2 . A Neuro endo pancreatic tumor- glucogonoma- ( called a P-NET) was what was first determined to be my diagnosis instead of APS . ( it was due to ileus and chromogranin A flagging a bit high.)

Initial consultation before sonogram ( directly on pancreas to the islet of langerhans region) via a procedure under general anesthesia- involved discussion of a whipple. This was in 2012.

I was in my early 40’s. I had a 7 year old and a 16 year old.

Thankfully the procedure did not reveal a tumor. ( it was APS causing clotting to bowels.)

When I’m not driving - let’s talk about the whipple. I have questions.

[HollyHeski Administrator]

Hi, I'm do sorry you are going through all this, must be very daunting and overwhelming, to say the least.

I really can't say how dangerous the surgery is, but if they are suggesting this route then they must be thinking a positive outcome/chances?

Please get in touch with your APS specialist and involve them in your treatment, a bridging plan for surgery would be needed too.

Also talk through your fears with your oncologist, they are used to all the questions and can be reassuring and honest with your procedures and prospects.

Sending you a big hug to give you extra strength and support.

[purple]

I am very sorry to hear about your cancer diagnosis and the other things you have to deal with.

I too have been recently diagnosed with invasive breast cancer and I have a number of other complicated conditions that need to be considered with any treatment. I have found, as I guess you will have, that writing all my medical information down is essential to make sure the doctors know what is going on, especially if the doc is new to you.

The rheumatologist was helpful with the advice about bridging Warfarin for the operations I have had.

I am getting support from a psychologist to help me through the maze of issues and the feelings I have. I am in the UK.

Sending very best wishes to you.

[msins in reply to purple]

Wishing you the best of luck also. Does anyone know if chemo effects your INR