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prostate cancer again -- radiation for vision problems caused by mets. Any experience?

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Posted 8/8/2014 4:41 PM (GMT 0)
It's been a while since I've posted. I wish I'd kept up and just didn't come back when things seem to be going down so fast.
DH asked that I just see if perhaps someone has had his problem and what was done. But very quickly, a short background.

RCOG treatment in 2003. Seven years later a yearly PSA result of 27. Lupron for 2+ years...till it stopped working. On to an Ocologist. Chemo and radiation on a hip lesion early last year. When PSA went even higher (it never really went down to an acceptable #) he was put on Xtandi. Over 3 months, PSA went from 300+ to 94. We were hoping we were on the right track, plus he was feeling really pretty good over this period. Suddenly in June, severe hip pain developed. More radiation. Now Xtandi has stopped working as PSA is way up there again.

Please bear with me while I describe what has happened just in the past 6 weeks. His eye had been bothering him slightly for a while and he thought it was just a cataract or perhaps a stronger prescription was needed. He went to a our eye doctor on 7/3 who said his left eye was not following with the right as it should and he ordered an MRI. At this point we still in no way connected this to PC! Within the following 3 weeks, while we waited for a 2nd MRI after the first was misread, he lost almost all sight in his left eye and swelling around the eye developed.

Diagnosis, a lesion in the eye orbit bone(?) that has created a malignant mass behind the eye which is pressing all the nerves in that area. He has resigned himself to the fact that the sight most likely will not return in that eye, agreed on by the eye doctor, the radiologist who is treating the lesion (and hoping the radiation results in reducing the mass also) and his Oncologist.

As of today, he has completed 16 of 20 radiation to the eye area. He still has some swelling but thankfully very little pain. When the radiation is complete, I think the Oncologist is going to start another round of chemo and she has mentioned the other PC pill starting with Z, hoping for a better result than what he had with the Xtandi.

Do I have a question in all this. Yes, please. Has anyone had this same scenario concerning the eye (though I sincerely hope not!) and what was the result? It doesn't seem like this mass is something that can be removed, at least no one has gone there. Just talk of somehow reducing it with radiation and perhaps chemo.

I was on this site a while back and then things seem to be under control, or so we thought. And I fully realize now what a monster this thing really is.

Believe me, any words of wisdom or encouragement or hope would be so greatly appreciated. I pray always for not only DH but anyone battling this or any cancer.

Changed your title to see if we can't attract some attention from those with similar experiences.

--PeterDisAbelard

Post Edited By Moderator (PeterDisAbelard.) : 8/8/2014 10:57:18 AM (GMT-6)

Posted 8/8/2014 5:01 PM (GMT 0)
The prodigal is always welcome. We rejoice that you managed to escape for a while and only regret that you have been reeled back in...

We had a recent thread with eye problems caused by mets to the skull. Slightly different from what you describe but similar:

https://www.healingwell.com/community/default.aspx?f=35&m=3145256 - Head pain and vision problems due to mets

They haven't been posting lately but they probably lurk. Perhaps they will unmask briefly to say hello.
Posted 8/8/2014 5:44 PM (GMT 0)
Thank you, moderator, for posting. I really do appreciate your input.
Posted 8/8/2014 10:09 PM (GMT 0)
Spotor, you mention your initial treatment was at RCOG. Are you in Atlanta?
Posted 8/8/2014 10:17 PM (GMT 0)
No, we live in Mississippi now but in 2003 we lived in Arkansas and went to Atlanta just for treatment.  We were fortunate enough to get to stay at Hope Lodge for the 7 weeks of treatment.
Posted 8/10/2014 12:26 PM (GMT 0)
With no replies, I guess DH's turn of events is as rare as I take it the doctors seem to feel it is.

I want to offer just one word of advice for those of you just starting this nightmare journey.  DH 'assumed' that minor eye problems were anything but associated with PC.  If I could go back we would have mentioned it to his Oncologist before waiting till it got almost as bad as it is today, which as I've said took only one month!  Perhaps early radiation to the eye bone lesion (if it had been seen in a another total bone scan) would have avoided the mass behind his eye.

Goodness, I hate playing the 'what if' or 'should have' game but often it comes down to this.  But yes, though the hip is the usual area where lesions appear we now know they can pop up anywhere, very quickly and during a time when you are actually feeling better than you had a long time and thinking just perhaps you have a handle on this monster. 

False! you can never let your guard down and shouldn't.

 

Posted 8/10/2014 3:31 PM (GMT 0)
Spotor:

So sorry to read about this.

But, please don't beat yourself up over this. I can envision dozens of ailments where I might wonder if this could be a resurence of my PC.

Eye problems would not even be on the radar.

Mel
Posted 8/15/2014 4:26 PM (GMT 0)
Spotor, Peter just alerted me to this thread. I am Hummbug's wife. My husband, Don, also developed eye problems due to mets at the base of the skull. He had a cataract in the left eye due to previous surgery for a detached retina. This was expected. Then, just before cataract surgery, we noticed that eye would not line up with the other. Excruciating head pain developed (and went on for three months until he had radiation) as well as double vision. A local neurologist to whom we were assigned was completely useless ("Come back and see me in two months") so we contacted a neurologist in NY who asked for a video, and then diagnosed palsy of the abducens nerve in the right eye. This is the very long 6th nerve and runs from the skull base all the way to the eye. Our neighbour (an ophthalmologist) got us in with a neuro-ophthalmologist the next day. She was certain the eye problems and pain were due to the mets and she walked across to the cancer centre to personally review the CT scans and MRIs that had been taken and labelled "negative." Panic appeared to set in among the members of our cancer centre "team," we received a call that afternoon, and a day or so later, Don had his first radiation treatment to the base of his skull, where the RO said his bones were being "eaten away" and were causing the vision difficulties. The RO said this was just appalling oversight and that we should have seen her three months before, when the pain started. The oncologists at the cancer centre were all dismissive, despite the fact they knew he had skull mets. He spent three months in misery, unable to function, with no appetite, due to dilaudid 24/7.

We were told that the vision "may correct itself in a few weeks or months." Nothing so far, but it has only been just over a week since the 6th and last radiation treatment. Chemotherapy has not been suggested for us at this point.

So yes, these bony mets can pop up anywhere and in our cases, have done so. I wish you and your guy the very, very best of outcomes and please feel free to email me if you wish. Moon xx

Edited to add: When you say that a lesion in the orbital bone has caused a malignant mass behind your DH's eye, do you mean in the soft tissue?
Posted 8/16/2014 11:53 PM (GMT 0)
Thanks, MLN.
Posted 8/17/2014 9:42 PM (GMT 0)
Yes, thanks MLN and to you too Peter.

Yes, the tumor is right behind his eye in the soft tissue.  He had the last of 20 radiation treatments to the eye bone on Thursday.  But the radiologist said it is doubtful that the optic nerve, being pressed as it has been by the mass, will recover.  Other nerves are affected too..he has numbness on that side of his face around his mouth and nose but of course the loss of eyesight has been the number one concern.

Mel, I know what you mean about starting to associate any new problems to cancer before ruling other stuff out.  He has been having some intestinal problems for about a week and there for a few days he just wasn't urinating.  After the eye episode, I called the Oncolgist first and was relaid a message through her nurse (Grrrrr, sorry) for him to go see his 'urologist'.  Sadly, I lost it a little bit and after thinking about it a while I called back and reminded them that over a 3 week period, while his eye went from 'perhaps I have a catarat' to losing his sight, they insisted he had to see his 'eye doctor' more than once!

I do have an update though.  Last Thursday he had a full bone scan, set up by his radiologist.  His Oncologist called that evening and said they saw the lesions in his hips that he has had radiation to a couple of times over the last two years, and they saw the one over the eye but thankfully no others in the skull area.  They did see several small leisons along his spine and one on his femur bone that he will start radiation to tomorrow since that has been bothering him quite a bit.  He said he feels like he should be glowing at this point!

So, he will see his Urologist tomorrow, also begin 15 radiation treatments to the femur tomorrow, and then see his Oncologist Friday.

MLN, I do appreciate your good wishes and certainly reciprocate them to your fellow.  Mine is taking it all much better than I think I would were I him.

I will be back with updates (and I promise to try not to sound like a bitter-pill!) and, MLN, I certainly would like to hear how your DH fares.

Ciao for now...Elaine 

 

 

 

Posted 8/17/2014 11:48 PM (GMT 0)
Hello Elaine... I am so glad that your guy doesn't have more skull mets. They are trouble with a capital T. We are hoping Dr. Myers (whom we see in October) will come up with some brilliant plan to get rid of them but we accept that this is a big hope.

I hate it when nurses convey messages. Surely to goodness, a doctor, however busy, can afford a few more minutes to make a phonecall. Our RO just got back from vacation and apparently the first call she made was to see how my husband had responded to the 6x treatment. She spent an age on the phone, first with me and then with him. Very impressive.

I hope the new course of radiation works out well for your guy and please keep us updated (as I will).

Hugs! MLN
Posted 9/5/2014 1:08 PM (GMT 0)
i'm back and once again seeking help, advice.

First to MLN, I hope your husband Don is doing okay (or as okay as is humanly possible) and that your October doctor's visit has good results.

DH, Johnny completed 20 radiation treatments to his eye-area a couple of weeks ago and almost immediately started 15 radiation treatments to both femurs where new lesions were found.  Five more  treatments after today and at least the pain in his thighs has subsided at this point.

Wednesday of last week he had his first of 6 (3 weeks apart is the plan) chemo treatments with the drug Novantrone.  For the past week he has never felt so bad in his life.  He is weak as a kitten, some pain but mostly weakness and he has had major cold sweats for the last few days.  He had blood work done yesterday and everything 'looked' okay.  White blood cells down a little and everything else they look at seemed okay.

Has anyone had experience with this particular drug?..though I know everyone reaction can be different.

I do my best to be positive but I can tell he is very depressed over this latest round of therapy. 

He sees his doctor again in a week or so.  He talked to the nurse over the infusion center yesterday regarding his blood work and we know she was letting his doctor know what was happening.  But once it's in your system, I guess there is not much to do about it and if the blood work is okay and you are not running a fever, what could be done to help just feeling downright terrible

In addition he has no appetite and has lost 10 pounds in just over a week.  He is eating some but not much.  I do have Ensure which he likes.  He is taking a medicine for nausea so that is under control.

But enough.  I've said probably way too much.  I really hope someone with experience with this drug will chime in with how they did on it.

To everyone, hang in there!

 

Posted 9/5/2014 3:28 PM (GMT 0)
Dear Spotor,

Welcome back and don't beat yourself up for staying away because things seemed to have been going good for you and your husband. We ALL live such busy lives already and then adding PCa to the mix makes it even more busy.

Yes, some doctors seem to take things for granted and don't really listen and don't hear us out when we express our feeling, hurts and concerns! I too, have mets to my skull and mostly to the right side. The past several months, been having unusually mild pain mostly on my right side and above my right eye. A couple months ago, I said something to my oncologist about it and she responded that it could be the onset of shingles and to call her straight away if I see red rashes appear. Well, no rash but the mild intermitted pain is still there. This coming Monday, I'll see her and remind her again!!

Take care and you and your husband are on my prayer list.

Dave in Bartlett, TN
Posted 9/5/2014 4:19 PM (GMT 0)
@Dave, yes, yes yes! Please see your doc about ANYTHING unusual in the head area if you have skull mets.

Spotor, first, my heartfelt sympathy for your husband and for you as caregiver. I have no knowledge of that drug so no help there. Don lost 22 or so pounds in three months when he was on dilaudid though. As soon as he came off it, he started to gain and is now gaining three+ pounds a week. For general health reasons (we don't have any processed foods), we made shakes using pea protein, a banana, and a whole lot of veggies. Those were a good way to get the weight gain going and taste delicious. So, it is entirely possible to put on weight again, although likely difficult for your guy while he is on chemo.

Sending you much caring...MLN
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