Thank you again Mia, for the added info. I have made a note of the prednisone dose. The problem right now is that Dr. Azad might decide on a meds that Dr. Myers might not agree with and so we will have five months of that before seeing him. I understand from Dr. Azad (he is the very personable and helpful Australian doc whom we saw at the BC Cancer Agency this week) that the general sequence is Zytiga followed by Xtandi but that they want to see the scans first - how this would make a difference, I don't know. In any event, the one we don't choose will be the one we have to pay full rate for if/when the other fails. That is, unless we can get the drug company to cough up something. I believe our oncologist (our local guy, not Dr. Azad) said that if our insurance company won't pay something, then the manufacturer won't either. Unfortunately, my husband's company switched insurers last month, so the cancer was a "pre-existing condition" for which the new company will pay nothing. Fun and games...
The following user gives a hug of support to Antonia52: Baptista (05-04-2014)
This whole pre-existing condition thing just makes me crazy. People making those rules must believe somehow they could never get sick. It makes no sense to me why we create these traps when we're all walking along the same path. I would just keep Dr. Myers office posted about the treatment as you go. I don't honestly know if they will accept your medical updates before you're seen the first time but if it were me, I would send them anyway, each time with a preface like "our first appt is on oct 3 and we want to be sure our treatment does not take us in the wrong direction. Any feedback appreciated. Please let us know of any cancellations or earlier appointment opportunities."
If they wrote back saying they can't offer advice before the appt, I would just keep sending the updates... but that's me. And actually, it wouldn't hurt to call and explain your insurance concerns by phone.
Thanks Mia...I am beginning to think that I couldn't get enough out of you!
I did actually update them in this way, right down to the comment about cancellations. Great minds...
As for this cancellation business, it's cruel IMO. His previous insurer wouldn't insure drugs for any "life threatening" condition, only providing a $10,000 lump sum benefit.
However, this did not apply to prostate cancer!!! Unbelievable.
To Antonia- if you post on this thread I'll get an email notification. So if you start your own new thread and want me to see it, please post a note here letting me know.
Generally- I've been trying to keep this thread up to date with progress and things that seem to be affecting that progress. We had a recent change that I haven't described yet. This is kind of weird and icky but it's an important concept, anyway. So my husband had a small mass removed from his thigh last year around the same time the cancer was diagnosed. The weird and icky part is it was fungal. Some of his labs before and after showed markers that can indicate the body is fighting a fungal infection but the specialist said the issue was definitely not systemic, but contained in the mass. So anyway, the surgeon apparently did not get all of it because it came back. About 10 days ago, a second more radical surgery was performed, to be sure it was all out.
So. Up until that time, our lowest psa was .147. In fact, we were just about to start revlimid to knock it down all the way (that's the drug we're getting free from the company because insurance turned it down). But labs a couple days ago-- taken about 7 days after surgery-- had psa at .047. Dr Myers congratulated us on the dramatic improvement and said hold off on the revlimid because we might see a very quick remission (wish us luck) now that the infection is gone.
So we had never considered that this small unrelated thing might be impacting the cancer treatment. Our treatment relies on ADT, yes, but boosting the immune system (Leukine) is equally important. There is a lot written about new therapies in all types of cancers that leverage the immune system now.
Even though it seemed like nothing -- a small contained mass that was really just a nuisance-- it appears to have been enough to tax his immune system. And just to put this in perspective, my husband is strong, 49 years old, and never catches a cold.
So never mind what type of infection WE were dealing with. It's easy to compartmentalize, but the body is one big working system and we need to consider it holistically.
The following user gives a hug of support to Mia99: Baptista (05-04-2014)
I have always held this belief (and congrats by the way). Before my husband was diagnosed, he kept getting terrible colds and even flu, but I didn't catch them. When he had them, he was very "guy-with-a-cold" ish and that provoked me to rag and tell him to suck it up because of what we women put up with. Looking back, I dislike myself intensely because of this. He was very stressed because he would not give up hating the company that fired him to make place for a nephew of the owner (true nepotism that!) This went on for three years and I believe contributed enormously to the development/progression of cancer. As soon as he was Dx'd, and went on a super-healthy eating plan, he lost 45 pounds, let the anguish go through learning the source of it (he wouldn't listen to my suggestions regarding this before), learned mindfulness/meditation, and hasn't had a cold since—even when I did...
We are all energy systems and a flaw in one small part can affect the energy/workings of the whole. I completely understand the fungal thing, as does the great Dr. Myers (a brilliant man IMO). Other doctors would scoff at this, believe me. We know two of them - top "prostate specialists" with their heads in the sand. I nearly typed something else there but it would have been too rude for this site.
I just emailed Dana to follow up on her offer of a (paid for) telephone consult with Dr. Myers. I am very worried. Eight days ago, my husband got a headache. It hasn't left, despite heavy duty meds. Our regular (local) oncologist has said a CT of the head is in order "to rule out anything sinister." Since my husband gets headaches only on rare occasions, this is extremely concerning.
He went on Zytiga and pred. today. His PSA was up from 7.0 last month to 8.9 this month. A bone scan showed the same as 15 months ago, with one hip lesion gone. But he had a met in his neck and I fear this is causing the headaches or, worse, one or more have started in his brain.
I hope Dr. Myers does agree to speak with us.
Hope your guy is doing well! A.
The following user gives a hug of support to Antonia52: Baptista (06-04-2014)
Antonia, I'm sorry to hear about the headache. I know how worried you must be. The fact that a bone lesion has disappeared has to be good. Hold onto that. If Dana offered a phone consult then I have to think Dr. Myers will take your call. That is excellent. My thoughts...
Take the phone call as an opportunity to ask Dr. Myers directly to please move up your appointment. I don't know how he will respond but the office staff are looking at the calendar and have their rules, but a doctor can make a different choice. This is important-- if he says yes, ask what the next step is. How and when will he ask staff to arrange the appt, and when is the earliest you can call the office about it (as in, when will they know his wish to fit you in.) The only challenge I've found working with Dr. Myers is office communication. Keep complete notes and always follow up with a question that pins down the plan. How, where, and when will a prescription be called in? Will he write and send the order for that CT scan? Etc. Let him be brilliant while you manage the process.
Re: zytiga, we've been instructed that pain med is not compatible with it. OK, I'm 98% sure it's the zytiga. The only pain med we're permitted is Naproxen (Aleve). Not easy with a headache but check into that.
Keep posting. We're here for you.
Things going well at this end. PSA dropped to .022. It's because Dr. Myers is brilliant, and soon you'll be talking to him so keep the faith.
The Following User Says Thank You to Mia99 For This Useful Post: Baptista (06-04-2014)
Alas, Mia, Dana was mistaken and we cannot talk to him until we see him in October. This is because we are not an "established" patient. I saw part of the letter from the cancer agency to our local oncologist and it was really doom and gloom except for the part about the disappearing met. Neither doctor thought to mention this.
The headache is less this morning but still there. He really looks terrible - the antithesis of how he normally is. He also saw his chiropractor yesterday (after a massage therapist said his neck was insanely taut) and the chiro said it was among the worst he'd seen in terms of "twisted" muscles "like serpents" and cervical adjustment being required as the cervical vertebrae were out of alignment. I'm being hopeful but not feeling it.
Last edited by Antonia52; 06-04-2014 at 05:22 PM.
Reason: Whoops. Apologies there. My country's laws are different. Meant no offence.
Antonia, well crap. OK. I would get the CT or MRI right away. Keep Dana informed about everything, symptoms, test results, etc. Ask periodically for an earlier appt and make sure you're on a waiting list if they do that.
Meanwhile he started zytiga and that's a really big deal. I think it's going to help for the summer and might really turn things around. Do you guys know levels for testosterone, DHT, and vitamin D? Our first doctor missed problems with those.
Hello Mia, Thanks for your help. It means a lot. His T is up very slightly to 0.2 from 0.1. (I think Canadian figures are different.) The alkaline phosphatase is insanely high, suggesting bone breakdown. The D was fine at the last test - at 53 I believe. I don't know about ADT but he is on Avodart which should take care of that. His bone density test showed the density of a 45-year-old - at least in the hip. Praying the Zytiga will work better than the bicalutamide and nilutamide. Is Dublin the Irish one or in the US?
I'm in Ohio in the U.S. I wish I could help more. I don't know a thing about alkaline phosphatase. But we were using both zytiga and bicalutamide for a long time, it wasn't one for the other.
Vitamin D seems good. Dr Myers likes it high, maybe 55-70. My husband takes 5000/day. And testosterone is undetectable. Not sure how readings differ in Canada but it sounds like you're close to that and on Avodart already anyway.
I feel pretty good about you starting Zytiga, though. I think you're on the right track, Antonia. I really do.
Thanks Mia. Ohio is close to Dr. Myers. That is fortunate. My husband's head is the same as it was this morning, with no painkillers. That is probably a good thing. He takes 5000 iu of D. one day and 10,000 the next. We weren't having any luck in getting in to see Myers for a whole year, and then a man we met on another forum went to bat for us. It has been challenging to say the least. But I truly believe he saved another lady's husband. He had terrible mets in his skeleton - really awful and had broken a bone. Dr. Myers put him on an estrogen patch, Zytiga and Sprycel. Ten months later - no mets seen on the bone scan. We are 10 months later and no difference. I realize we are all different but I have to wonder. That lady doesn't post any more as she wanted to get away from the whole cancer thing. They have small children and I can understand. Again my deepest gratitude. It's so nice to be able to share with someone who understands.
The following 2 users give hugs of support to: Antonia52 Baptista (06-05-2014), Mia99 (06-05-2014)
This is another update on our continuing progress and also looking for advice. So psa got stuck again at .023 for a few months which is good but not undetectable, right? Dr. Myers added metformin (ramped up from 1/day to 4/day in about a month) and psa is now .017 -- headed in the right direction again.
All good! Except how having stomach symptoms, diarrhea, not able to eat much. They said imodium and fluids and it may self-correct in a couple of weeks. Any experience there? Advice welcome.
Antonia52 if you happen to see this, I've been wondering about you guys-- post an update!
Mia! I thought I had your email. I hunted and hunted and couldn't find any emails between us. A Barbie Grandmother moment I guess! I wanted to catch up as things are not good here and we see Doc. Myers next Monday. My guy had excruciating head pain for three months. He was put on dilaudid and couldn't eat. He was so ill and couldn't get to see a neuro for five months and the cancer centre screwed up and said his CTs showed base of skull mets but no issues with them. Long story short, I consulted a neurologist in NY online, he noticed something wrong with my husband's right eye and we reported this to the cancer centre. There was a lot of panic and he went in for Ra to his skull the next day. In two sessions (he had 6) the pain had gone but he still couldn't eat due to feeling ill. So he started to improve and then came down with some sort of horrible infection in the throat. He says it is a cold but the doc put him on antibiotics. It is still causing problems. Also, despite being on abiraterone since May, his PSA is climbing and is now 10.7. Both of us find this strange as a circulating tumour cell test was "favourable" at 3. However, I just came back to find you here and landed on that post about the infection in your husband's thigh. My guy is convinced that he is on the mend and that the PSA rise is due to whatever infection he has. There are no studies or anything I can find on infections increasing PSA, but I am wondering. Also, chemo shoots up the PSA as cancer cells die and spill their antigens...so couldn't this happen for Ra as well? Or does it just scramble the DNA? So many questions for Doc Myers for sure.
I thought I had subscribed to this thread but obviously I haven't or I would have seen your post. Any improvement for your husband's tummy?
Last edited by Antonia52; 09-30-2014 at 04:51 PM.
The following user gives a hug of support to Antonia52: Baptista (10-01-2014)