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Sticky Blood-Hughes Syndrome Support
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APS and tumours are related?

Hi all...As my Mom had severe vomits everyday, Gynaec suggested Abdominal and Pelvis scans..In Report attached below, the size of the cyst is large and Doc suspects tumor ( Ovarian Cancer).. Doctors also advised for CA125 Blood Test. For further investigation, MRI also is suggested. But for MRI , she will b sedated as she is irritable. After MRI and Blood tests only, Doctors will come to know whether it's treatable or not (Benign and Malign) and in which stage.

So Because of APLA or other autoimmune disorders, can tumor b developed? Doc says as of now, in any case she shud b operated, but the complication is, She has the chances of bleeding due to Blood Thinner. Doc says, open surgery is going to b risky and complicated. Now I really donno wt to do.. I am worried for her..Please help and guide.Today I wept a lot after listening to all dis..I am so upset... 😔 I didn't tel my dad anything about this still though he is wid me in Hosp...

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I am very sorry to read your post; your anxiety and distress is normal. Although you don't want your dad to know about your feelings, I think it is better to share your feelings with him and he with you. You and your dad may want to protect each other, but it is better to share your ordinary, human feelings - and there is nothing wrong with crying.

We can't diagnose why this has happened and can't give any medical advice. I know you want answers - but only your doctors can tell you the diagnosis and prognosis. This isn't what you want to hear and I am sorry I can't take away your pain and distress.

At this point you & your dad want to support your mum. But, you and your dad need to support one another which you can't do if you don't share your feelings. Often, men feel they have to be strong and not show any emotion! You, don't want to add to your dad's distress. Your mum, has to wait for a diagnosis, prognosis and treatment plan, all of which is very scary and she may also want to protect both of you! It's only by being open and honest and sharing your feelings, that brings you all closer together in this fight.

On the other hand, this may be too new and too painful and too frightening. You and your dad and mum need time to process what is happening. You may be told to "stay strong" or "be positive" - and while this is all well and good, what if you can't feel strong or positive? Most can't but don't admit it and don't talk about it. Have people around you who can bear to hear anything and everything - or nothing! A support system is vitally important because you need to be there for your mum and dad.

While this may not be APS related, this is a place where you should be able to share with us what is going on.

Look about yourself so you can care for your mum and dad.

With good wishes,

Ros

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Yes, Thank-you so much for the reply...I will talk wid him ...will gather courage..

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Hello, I am sending you best wishes and warm hugs, I can't really expand much further on the excellent answer you have already had, other than to agree that the way you feel is normal and to talk about it is a good idea. Also do please talk to the medical team about your anxiety about your mother, they are there to help. Sometime a calm and careful explanation can help in situations like this. If things feel too unbearable, counselling can support families at such a difficult time. I have the links if you need them. I hope the next set of testing goes smoothly for you all as a family. MaryF

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Yes Mam, Thank-you ...

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Make sure your doctors are aware of micro vascular angina , also called micro vascular clotting, which causes paralytic ileus. ( non mechanical pseudo obstruction) .

I noticed a lot of gas in scan.

This is not the same as an arterial clot.

I have had this- many times.

It’s far more dangerous is small intestines clot because the small intestines only have one layer and can rupture more easily.

Large intestines have two layers. ( I had this problem again last week actually! So gastro was talking about it again...) CAT scan with contrast is needed.

Just because she has this tumor does not necessarily mean she could not be having this Other problem independently.

Just make sure they have at least thought of it. Anything to help your mother feel more comfortable through this.

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Ohh Thank-you so much Mam! I will definitely talk about this Tomo with Docs....😘 What a help...thanks!

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It may not be the case at all, but at least check. Mine would come and go in 12 hour cycles a few times a week. ( before my diagnosis.) I was put in surgery a few times on suspicion of adhesions.

It happens now if INR gets too low.

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Loads of Hugs to u🤗

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HHH, “ Huge Hughes Hugs!”

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First, very sorry to hear about your mom. I’ll be sending my love and prayers your way. Stay positive and lean on your family!

Sorry to go off in another direction but I’m curious about the condition Kelly mentioned above. After my c-section in February last year, I had terrible pain for a week and a half or more at what felt like the bend of my large intestine. I went to urgent care and they found what looked like a big gas bubble but said it was non obstructive and told me to come back if it didn’t get better. My little one was in the NiCu and it did eventually get better so I never followed up, but do sporadically get the same sharp pains again. Does it seem possible it’s related to what you’re describing or are the symptoms different?

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Hello mam, she is alwys nauseous....she has vomits...and says that smethn is wrong wid her though she cnt express nythn...I guess she feels abdominal and back pain..and the thing mentioned about Kelly Mam, I am going to confirm that with Docs...buy, Thank-you so much for the reply...!

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See comment below

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The scan will show ( if In active gastro paresis) the following in the bowel loops:

Air filled bowel loops that have a distinct line of separation: air on top and fluid on bottom. This indicates ileus. Bowels have stopped working. This is what would happen to my bowels.

But as it clears , sometimes you can just be extremely gassy- very distended as its trying to resolve.

It depends on what stage it’s caught and tested for.

Also the doctor must check for bowel sounds with stethoscope. Sometimes no bowel sounds at all. Sometimes they are very abnormally high pitched. “ sing song” it is called.

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Omg.... So unexpected...okay mam, I wl tk wid docs...to check .. thanks for the reply

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Others have given you excellent information and I can’t really add anything. What I would say is please do talk about how you are feeling it must be distressing for you. A problem shared is a problem halved.

Sending love and cyber hugs

J

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So sorry.

My oncologist told me when I was diagnosed with Stage 4 B cell nonhodgkins lymphoma that anyone with autoimmune issues is more prone to mutated cells that cause cancer. Our immune systems don’t function normally and cannot destroy mutant cancer causing cells.

Don’t know if any studies have been done on this issue.

Nancy in West Vitginia

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I dont like that answer😖

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Yes me too 😥....today they carried out an MRI Scan of abdomen and pelvis...reports will be coming tomorrow..

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You know Wittycjt, I don’t like it either.

Nancy

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I know you dont i was being sarcastic nothing about this is likable

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I know. Can be discouraging at times.

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Hi,

I'm new to this site, too and even though I was diagnosed with APS 22 years ago, I feel like I don't know much more about it now then I did when I got diagnosed. I saw this post Are APS and tumors related? and wanted to post because I was wondering that/, as well.

Five years ago, I almost died when I had a bleeding ulcer. After almost dying, (I coded but they got me back) they found the ulcer along with a Carcinoid tumor. It's small and they said it could be more dangerous to take it out so my Dr's are just monitoring it for now.

A month ago, I started having having vision problems. My right eye is the worse, bloody, swollen and bulging out. I also started having double vision. After seeing 3 Eye Dr's, they told me that they are concerned that it may be a tumor that's causing my eye to bulge out. So, today I'm having an Ocular MRI and back to see the Eye Dr's tomorrow.

I've been through more health battles then I can count so I don't normally get nervous but this is my vision, so I am a little anxious about it.

So, I'm curious if APS and tumors are related or it's just a coincidence. Most of my other health issues seem to stem from the APS. Thanks for your thoughts and comments.

MaryAnn

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Hello, there MaryAnn-

We wish you luck with the entirety of your health, but for the moment, your eye.

Be sure to back please with a new post and your results so we can keep tack of how you are!

I did just check- as you have not posted before, i want to extend a warm welcome to you.

I’m sure you have already seen it, but just in case:

ghic.world/

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Hi Kelly,

Thanks 4 the reply. The MRI showed that I have a Carotid-Cavernous Sinus Fistula or an AVM. My Eye Dr. called my Primary Care Provider and then my Neurologist to go over my case with them. My Neurologist called me at home to let me know that he was sending me to see a Neurosurgeon a few hours away. He also mentioned that it's very possible that this is related to the APS. I will keep you all updated. If anyone prays or whatever I would appreciate it. I am very concerned about the possibilities of vision loss and stroke.

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I spent some time after your thoughtful response to me doing some looking around on what I could find about this structural malformation.

It is certainly a lot for you and your family to take in very quickly.

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I am so sorry...but you will surely get thru wtevr it is...just keep Ur willpower strong...my mom, has very unique will power which has brought her til here...nd she wl fight all the odds fr me.. confident about DT..u too will..Dnt worry...let's c wt hpns...keep us updated..

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Hi and welcome to this friendly site!

What anticoagulation drug are on on for your APS?

I also wonder if you have got a Specialist of your different autoimmun illnesses. APS often go together with other auotimmun illnesses like SLE, Sjögrens, RA, Thyroidea etc. Difficult to diagnose and treat because of that and this is one of the reasons we do need a Specialist of autoimmun illnesses. Often a Rheumatologist or a Hematologist. Fibromyalagia may also be difficult to diagnose correctly sometimes.

Please give us a new question as Kelly in Texas says and tell us also where you live.

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Do Not allow a morcellator to be involved whatsoever just in case it is a cancer.

Thank God my wife’s tumor was the size of a bowling ball and the surgeon was smart enough to know Not to use a morcellator.

massdevice.com/power-morcel...

(My wife does not have Hughes)

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