Pressure Behind Eyes - Post SRS

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2/10/2014 11:31am
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Replies: 11

Hi all,

My wife had SRS done on a single met a week before xmas. The same day we reintroduced ipi. The last couple weeks she has what she has called pressure behind her eyes and just a funny feeling. She is certain she has another met. She is scheduled for her post ipi scans and mri in early march and does not want to get it done earlier. Curious if anyone else has had this feeling after SRS? Thanks

POW - (2/10/2014 - 6:30pm)

Hi, Eric-

My brother had SRS and did not feel any pressure behind his eyes--he didn't feel much of anything. Then he took ipi and 5 days later developed severe neurological symptoms. His doctor theorized that the ipi-activated T-cells got into the brain, surrounded the brain mets and caused brain swelllng.

If your wife is having any neurological symptoms, including pressure behind the eye, she should get it looked at immediately. If it is a met, the met could bleed and cause a stroke-- not good. It could also be that ipi-activated T-cells are surrounding and killing an existing brain met. The swelling and extra intra-cranial pressure caused by the swelling can damage the brain. 

Please do not let her suffer in silence. This is probably something that can be treated. She needs to call her doctor and report this immediately.

Hey Eric,

Sorry for a new worry...but don't be asking us on this board and MIF!!!  Ask your doctor.  Like Kyle said on the other board....she may be dealing with side effects from the ipi that can cause anything from basic eye pain to problems with the optic nerve and so on.  All of us can name a multitude of things...but none of that helps.  Go to your doctor.  Something as simple as a neurologic exam and fundoscopic exam (to check for papilledema) of your wife's eyes may give a great deal of answers...that none of us can give you here!!!  They may or may not recommend an additional scan....but they can certainly advise you and your wife as to where they think you should start!!!!  There is no doubt that the person with melanoma gets the final say.  But, right now....neither of you nor any of us know what you're dealing with.  Get an exam!!!  Then, decide what your wife thinks she should do.  And....I do know it is easy for me to give grand advice...sitting far away in my own little world.  But, we've talked before....I just worry about you both!  Yours, c

chaoticallypreciselifeloveandmelanoma.blogspot.com

Thanks all.. I don't take anything I read as gospel, no even her own doctors. I just try and take bits and pieces of input and make our own mind up. I just look for similar stories to help.. And yes it is not up to me.. Only her... Just trying to help her out all I can.. Appreciate it

That's a good plan and you do an incredible job for your wife.  Hang in there and keep us posted with what you both decide. c

chaoticallypreciselifeloveandmelanoma.blogspot.com

POW - (2/10/2014 - 9:02pm)

Celest, I didn't think Eric was asking anyone here to diagnose his wife's problem. He was describing her symptoms and asking if anyone else had experienced similar symptoms after SRS. That is a perfectly valid question and is absolutely appropriate for this forum. We get that type of question all the time.

If you think these symptoms warrant a call to the doctor, just say so. But stop with the exclaimation points!!! They are annoying and unnecessary!!! All posts here should be gentle, courteous and sensitive. 

Gee, POW!!!!

Didn't know you had become the moderator for this forum.  Also was completely UNAWARE that caps, exclamation points, emoticons, etc were against your rules.  Seems to me that you had a patient tell you just the other day that YOU made him feel worse.  Hmmmm...

At any rate, not that it is your business, Eric and I have communicated for some time via email and other boards.  You are correct.  Any question is a perfectly fine question.  My opinion is that given what his wife has been through and is currently experiencing...a doctor who checks her can give better guidance that any of us can at this point.  Obviously YOU are entittled to YOUR opinions!  I'm sure Eric can speak for himself and tell me what he thinks of what I have to say.

I hope no one else will type in ways in which you disapprove or gives advice that doesn't meet your particulars.  I think, for myself, I will continue to give accurate information to my best ability and support as best I can....per my standards!!!   Thanks.  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

Dear Eric Sorry that your post is being used inappropriately.

POW   I missed the memo about your being the moderator of this board. If you have something to express about the appropriateness of a post don't hijack this posting to lash out.

I really wish this board had a moderator. In the interim let me say that I will be monitoring you for misinformation that you put out since it is so frequent and can have such a negative impact on those on this board. Please remember that all posts should be "gentle, courteous and sensitive". In the case where one is giving explicit medical advice, as you often do, it needs to be accurate as well.

                                                                                                                                           Brent Morris

BMorris

I am so disappointed with this entire exchange but I saw it coming as soon as I read Celeste's reply. With all due respect,  as a mere caregiver and NOT a melanoma patient I think a new thread is in order to address these ongoing issues.  We can hash it there but please do not hijack Eric's concerns and questions.

All good folks. Just looking for answers like everyone else.

Hi Eric -

Sorry that your wife (and you) are dealing with this.  I've not had SRS or brain mets, but I did have a very specific reaction after 5 doses of Ipi that resulted in swelling of the muscles at the back of my eyes.  I was OK for 4 doses but on the 5th (1st maintenance dose) I started experiencing eye issues.  I started having symptoms similar to 'Graves' disease.  My thyroid levels were out of whack which may have been triggered by Ipi, but I didn't have the thryoid markers for true Graves disease.  It was a puzzle to my Onc, my Opthamologist and Endocrynologist.  We were on the cutting edge (ipi) with no others in the Ipi trial experiencing this.  Eventually I was treated with high dose steroids for this.  I never went back on Ipi, but I didn't need to - it continued working even while on steriods and I'm NED.

If it is Ipi related and not mel/tumor/SRS, etc, then: Aside from the pressure, is she experiencing any double vision?  Redness of the eyes?  Gritty feeling (like sand) in her eyes?  Difficulty or limited field of vision - she should be able to keep her head straight ahead and then using only her eyes be able to follow your finger around looking to the far left, far right, way up and way down, etc without issue or double vision.  I also started getting headaches very specifically over my eye brows. 

I might suggest a couple of things to follow up on this:   1) Make an appointment ASAP with a good Opthamologist and have them check her eye pressures, perhaps a few other tests, etc to get a baseline.   2) For the brain MRI in March, have your Onc add on  to the MRI order additional 'specific slices (pictures) of the orbits (eyes)'.  That will offer a better look at the eye muscles and should you need to further follow up with an Opthamologist, would give him/her a better look at that area.  3) Have them include thyroid tests in her next bloodwork

All of my issues were in early 2009. I've been NED since then thanks to Ipi.   Fast forward to early 2013 and I started experiencing thryoid issues and have since been diagnosed with actual Graves disease - and this time my thryoid tests show the markers for it.  I'm still fine, on a daily thryoid med, and have no real eye issues with 20/20 vision. 

Since Ipi takes the brakes off the immune system, my med team and I have a theory that I might have had thyroid/Graves lurking in my background and that ipi unleashed it a bit in 2009.  I have no family history of Graves or thryoid issues.

I wish you and your wife well on this journey.

Luke 1:37

Thanks so much. This is her second round of ipi so my guess is the more you get the more chance of an adverse effect can occur. She did well on her first round. But this one is kicking her butt. I appreciate the time...