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Head pain and vision problems due to mets

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Posted 7/31/2014 2:27 PM (GMT 0)
Hi all, very sadly, it was confirmed that Don's visual problems and head pain are due to lytic mets in the base of his skull. The radiation oncologist was extremely concerned that this case had not been referred to her as soon as the head pain started. I told her we actually ended up speaking with a neurologist in NY since no one would provide any help other than "come back and see me in a couple of months" up here in Canada, including the B.C. Cancer Agency docs themselves (in their case, one month).

The doctor said that the cancer in his skull was progressing rapidly and the bones were being "eaten away." She didn't mince her words and kept saying things like, "Go and enjoy life now" "Eat what you want at this stage" and other doom and gloom things. Don had his radiation and has four more Tx scheduled (today, Friday, Tuesday and Wednesday of next week). He is on dexamethasone as well as all the other stuff. Today we see his oncologist over there and I will ask for a bisphosphonate or similar drug to try to slow down those osteoclasts. I wish we could see Myers earlier as they sneered at his use of Sprycel and Leukine and also say Provenge is useless. It's all about chemo and thinking inside a very small box.

Anyhow, anyone who has had skull mets and is here to share their story—I am aware of those who have departed as a result of skull mets and again send my sympathy—we would be cheered, I am sure. Moonlitnight (and Don, who is staying away from the computer and anything other than his drone...)
Posted 7/31/2014 3:25 PM (GMT 0)
His drone? Not sure what that means.

Anyway, have you checked out the YANA site. It is an extensive site with many personal stories. I think you can search for folks with particular situations, but I'm not sure.

Maybe someone else can be more specific.

I thought you were also close (relatively speaking) to Lam/Scholz and you had a good experience talking with Lam. Is it possible to chat with him again.

Mel
Posted 7/31/2014 3:34 PM (GMT 0)
MLN,

Wish it was better news but at least you know what you're up against now. If thoughts and prayers can help, they are on the way.

Mel,

It is either a civilian version of the surveillance drones used by the military or part of his bagpipes.
Posted 7/31/2014 3:45 PM (GMT 0)
Mel,

There is a video that was going around of a fireworks display shot from the inside using a drone camera.

Pretty cool, actually.
Posted 7/31/2014 6:18 PM (GMT 0)
Moonlitnight-

I'm sorry about the new mets, but at least you know the cause of his symptoms now and can deal with them properly. So he's having the mets on his skull irradiated? Any discussion of Xofigo? How about Xgeva rather than a bisphosphonate for the skeletal-related events (pain, fractures)?

He hasn't had Taxotere yet? Why not?

Sprycel failed in clinical trials for mCRPC last year, and this class of drugs is very toxic - why would you want that for him?
Docetaxel and dasatinib or placebo in men with metastatic castration-resistant prostate cancer (READY): a randomised, double-blind phase 3 trial

- Allen
Posted 8/1/2014 2:41 PM (GMT 0)
Hello,

Glad Don is feeling better this morning. So sorry it took several months to find out about the cancer in his skull was progressing rapidly and the bones were being "eaten away."

The past few months, I too have had pain on the right side of my face and was thinking it was because of the mets in my skull (original scan showing mostly right side). A couple months ago I told my oncologist that the right side of my face was sore a few times during the day and night, she said it could be shingles and to contact her right away if a rash (no rash). Well, the past few days, not having pain as often but I'm very concerned about my head hurting!! Also, having pain in the back right side of my upper neck (had surgery back in 2008 on C 3 & 4). Last week, had a full body scan and when I received the written report, didn't say anything about it. I see my oncologist Sept. 8th.

I'm praying for Don and you!!

Take care and have a great day.

Dave in Bartlett, TN, Taking it one day at a time....
Posted 8/1/2014 5:09 PM (GMT 0)
Hi,

Thank you for the information. Not had a headaches today and hopefully this will pass!!

Dave
Posted 8/1/2014 6:26 PM (GMT 0)
I'm so glad Don is doing better. Maybe he has dodged this bullet, at least for awhile (and that is what life is, right?).

I get so angry and upset when I read about these incompetent so-called specialists. If you and I know more than the expert, then we have a problem.
I see this too often.

Some of our HW members are paying a HUGE price for their incompetent local yokles.

It's one thing when a doctor makes a bad mistake on a minor issue. But it's not minor for us (and for oncologists).

Mel
Posted 8/2/2014 11:34 AM (GMT 0)
Hummbug- he Yananow protocol guy you spoke of is a friend of mine here, Doug F. I am very familiar with the protocol and his findings, he has guys around the world whom have tried this because of Yananow's existence. Basically, the protocol does not work on just everyone and it seems to be influenced by not only what T level you may have (likely need T of 20 or less, 50 is questionable), also likely you need a psa level in the lower ranges (maybe 20 or under), also seems it may work better for guys whom had the prostate removed vs. radiation only patients (based upon the limited results-discussions with guys whom have tried this). It has worked in some patients or slowed down psa increases, some patients only tried it for 2-3 weeks which may not be a long enough time span to really know the overall results.

Based on what I have seen via Doug and know about this, someone with mets is less likely to respond to this protocol, micro mets maybe a different scenario for it working, but known multiple mets unlikely it will work. Doug is still getting results on this, and it is way over 1.5 years on this. Very sorry to learn of your current situation.
Posted 8/15/2014 12:26 AM (GMT 0)
Bumping. Wondering how things are going

Mel
Posted 8/15/2014 1:43 AM (GMT 0)
Thank you, Mel. She hasn't been here since August 6th.
Kukukajoo hasn't checked in for a few days either.
Thanks for reminding us.
Posted 8/15/2014 2:11 AM (GMT 0)
Sorry to hear of this report on Don and his skull mets. Doesn't sound good at all, but with me, I would rather my doctor be blunt and straight forward, even if delivering bad news. It doesn't mean its an exact science, and that's all there is to it, but I would rather deal with knowing the worse case scenario, then having someone blow smoke up me. At least this way, you know the worse you may be dealing with.

I hope for Don, and for you and your family, that things can be radically slowed down, so that he can enjoy his remaining life to the best of his abilities. You have my prayers.

David
Posted 8/15/2014 4:06 PM (GMT 0)
Hello all, I have signed up under my old name as Don is no longer participating in the forum. He is doing well and sends all his best regards (I got that from him as he drifted by with the vacuum cleaner - things are looking up ;)) The radiation oncologist is very pleased with the results, but not as pleased as we are with the lack of head pain and being off dilaudid. Most days, even ibuprofen is unnecessary and Don uses it only to manage mild headaches. Possibly, the Zytiga is not agreeing with him. He has lost close to 20 more pounds in three months and looks skeletal, while having a very good appetite. He is also very fatigued and this too started when he went on Zytiga and pred. He is presently on one Zytiga with food, until we get in to see our doc and get switched to Xtandi. Hopefully, this will have fewer SEs. Of course, the fact he had no appetite while on dilaudid likely contributed.

Mel, thanks for bumping this thread...

Peter, thanks for being you.
Posted 8/15/2014 6:20 PM (GMT 0)
This is such GREAT news. Thanks for the update!

Mel
Posted 8/16/2014 12:08 AM (GMT 0)
Thanks for the update...sounds like good news...and he could vacuum my house if he'd like...
Posted 8/16/2014 12:14 AM (GMT 0)
So glad he's doing better with the head pains. He's in my thoughts and prayers.

Dave
Posted 8/16/2014 1:53 AM (GMT 0)
Moonlit,

Nice to read the good news!
Hopefully they will get his weight loss under control also.
From drone to vacuum.... NICE! ;)
Posted 8/16/2014 1:56 AM (GMT 0)
:) MsWW Yes...the vacuum is a great improvement, believe me. The drone is just the beginning. It seems to "require" numerous accessories - like about 40 already.
Posted 8/16/2014 2:32 AM (GMT 0)
Glad to hear some good news concerning Don. I vacuum, but that's a killer job with my spinal pain, even using a tiny lightweight upright.

As far as the drone, as they say here, its GFMPH, let him have his fun!

David
Posted 8/16/2014 6:25 AM (GMT 0)

Moonlitnight said...
:) MsWW Yes...the vacuum is a great improvement, believe me. The drone is just the beginning. It seems to "require" numerous accessories - like about 40 already.

But, of course! smilewinkgrin

Has he gotten the LED light strips yet? If not, he should! Imagine the neighbors calling in UFO reports!
Not speaking from experience or anything, just sayin'! turn
Posted 8/16/2014 6:16 PM (GMT 0)
:) I won't mention it to him...
Posted 8/16/2014 7:06 PM (GMT 0)
It's so wonderful reading these recent cheerful upbeat posts!

Mel
Posted 8/16/2014 9:23 PM (GMT 0)
:) He is very tired though, Mel, and doesn't look too chipper. I am going to ask about radiation tiredness to see if this is a normal response. He becomes fatigued after ten minutes or so of activity. This and the "wasting" appearance is very concerning. ETA just entered "radiation fatigue" into the search function and see that it is normal. He only had 6x spot radiation, but it really seems to have robbed him of energy.

Post Edited (Moonlitnight) : 8/16/2014 3:30:30 PM (GMT-6)

Posted 8/17/2014 11:26 PM (GMT 0)
Moonlitnight,
Good to know the radiation has reduced the pain and and vision should improve as well, at least Mark's did. Hope that he is able to get some of his energy back.
Prayers for both of you
Pat
Posted 8/17/2014 11:52 PM (GMT 0)
Hello Dreamer and many thanks. I'm not too well up on radiation. We were told that there wouldn't be any radiation to the brain, just to the base of the skull. He's more active today than I've seen in a while. Did the seawall this morning, and then started sweeping the deck and clearing some things in the yard. Just read your signature. Again, my sympathy on your loss. This is such a flippin' SAD disease. xx
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