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Posted 12/4/2016 4:55 PM (GMT 0)
Well, it appears I have survived the chemotherapy. Not much left in the way of side effects. Pain in finger tips, losing finger nails, numb feet (mostly the ball) and losing nails on big toe both feet.

New developments. Kidney stone last three weeks after hospital visit and no food or drink for 36 hours. My lemon juice is not working this time. Going to see if GP will write Rx for Flomax. Leg that showed small met a few months ago is now quite painful from hip to knee. Pain pill helps this along with kidney stone pain. Recent scans show fairly stable disease in lungs with some advancing of spinal mets. MRI scheduled tomorrow. Possible radiation of spine and leg. Spine has already had one dose so a bit hesitant on this.

Med onco says time for Zytiga. I read several of the posts here about success, failures and side effects. Thank you all for sharing. Onco also says this means restarting Lupron. I do not want to do the Lupron. Also will add xgeva. Cost of Zytiga is eye popping and I understand the patent has been extended to 2020. With insurance it will cost about $7500 per year. (That is assuming I still have medicare with the changing of the administration. Is not looking favorable.)

I want to wait until January to start the Zytiga. Need to run this by my oncologist.

Don
Posted 12/4/2016 5:28 PM (GMT 0)
Don-

I can't remember why you were taken off Lupron. Were the SEs very bad, or was it a vacation, or both?
Posted 12/4/2016 6:08 PM (GMT 0)
By chance, are you a military veteran? Have you served in the military at all?

The Zytiga has been working great for me.. But it must be used with Lupron or Eligard or Firmagon which are all pretty much the same..

If those co-pays are a burden, there are foundations set up by the drug companies that will cover them for you. They have very liberal income limits...The PAN foundation is a big one. At the moment, they are not accepting new applicants for Zytiga or Xtandi but I have been told they will be refunded after the first of the year and will open their enrollment again. But don't take that as gospel....PAN is not the only one..
Posted 12/4/2016 8:47 PM (GMT 0)
Don: Send me an email so we can discuss Zytiga off-line.
Posted 12/4/2016 8:55 PM (GMT 0)
Don,

I'd like to respond to your comment on the dubious future of Medicare. It is likely or possible that with Trump as president, Congress will pass legislation curtailing Medicare benefits, but that will not affect you, if you are already on Medicare. Instead, Paul Ryan and other Republicans are proposing that there will be no changes for several years, and that everyone currently on Medicare or over the age of 55 or so will continue to enjoy the conventional Medicare program. It is only younger people who will see their Medicare benefits cut. I'm personally opposed to what they are thinking of doing, but it is important for people currently on Medicare not to panic about losing their benefits. That is extremely unlikely to happen.

FC
Posted 12/4/2016 10:50 PM (GMT 0)
FC:

Glad to read that about MediCare!

Mel
Posted 12/5/2016 10:17 AM (GMT 0)
TA, I asked to stop it while recovering from chemo. It has always caused me weight gain and irritated my heart issues. Just as soon not take it if possible. I lost over 25 lbs after stopping the Lupron.

FW, Not a veteran. Did six years in Air National Guard but that does not count. I was going to college at the time and figured I could use the extra money and get military service out of the way.

Nomar, email is [email protected]. I would like to hear from you on two counts. Provenge and Zytiga. I was talked out of Provenege when first diagnosed.

FC, I don't want to start a discussion on medicare but I hope you are right.

Thank you all for comments. Going today for some more scans of spine.

Don
Posted 12/5/2016 8:05 PM (GMT 0)
Hi Don, I sent you an email reply and await your reply to my email with respect to Zytiga.

With respect to Provenge, as long as it is covered by insurance, I can't understand why anyone would not do Provenge as in theory it makes all future therapies more effective. Worst case, it can't hurt and might help was my thinking.

Todd1963 whose PSA was in the several thousands is the poster boy for Provenge success. As a G9, my PSA never got higher than 3.68.

The reason I was even diagnosed was PSA doubling time from 1.6 to 2.6 to 3.68 on consecutive semi annual PSA tests.

I am one of the lucky ones who tolerate Lupron, Zytiga, Provenge, SBRT etc very well with minimal side effects.

It's impossible to know whether to attribute my treatment success to Provenge, or to Zytiga, or to SBRT but most likely it was a combination of all of the above. I stopped all treatments 19 months ago. Both my PSA and my Testosterone (hovering around 42) remain undetectable.
Posted 12/6/2016 5:47 AM (GMT 0)
Hi Jim,

I did not have email in inbox. Can you resend after checking address?

Visit today was not good. I have one tumor pressuring a bone in my neck. Seeing some odd effects and onco has scheduled a second round of radiation. As he put it there is very little in the way of tumor volume in my body but this one and it's location is not good. Leg is pounding with pain tonight.

I did not have insurance when I was looking at provenge but would have paid out of pocket same as I did for RT. Got diagnosed with cancer in the middle of waiting on insurance approval. At the time companies could deny for existing condition and so I was turned down. Next five years of treatment was out of pocket and had to battle hard for small discounts. There is no free ride for uninsured patient.

Don

[email protected]
Posted 12/7/2016 9:57 PM (GMT 0)
I got your email Don.

Spot radiation to that nuisance single met seems like the way to go.

Good luck and keep us posted.
Posted 12/7/2016 11:20 PM (GMT 0)
Wow Don, sorry to hear of your troubles and insurance problems. Good luck on the spot treatments, hope they help. Take care. -JR
Posted 12/8/2016 12:44 AM (GMT 0)
JR, thanks for the encouragement. I have good insurance now with Medicare and supplemental plan. My insurance issues were early in my journey. I certainly learned some things about the business side of medicine. Luckily I can afford the copays.

Last spot treatments in back and neck knocked out the pain immediately. I am not having neck pain but one of the spots previously treated is growing and pinching my spinal cord. Doc was concerned when I told him I could not hold a drink in my left hand without it flopping to my side. Will treat next Tuesday. I went over the scans and plan with the doctor as I am very concerned about collateral damage to my esophagus. I told the doc that my QOL had taken a nose dive with chemo and I have just barely regained my sense of taste. Sex was gone with the first treatments 8 years ago and I have been steadily drifting downward. I was quite active before with regular gym attendance, frequent bike rides, kayaking, hiking and walking the green belt in Boise where I lived at the time. Now I am lucky to walk to the end of the block. about all I have left is the enjoyment of a good meal. No wine, no beer.... meds say no alcohol.

My leg was a new met in the thigh bone and we elected not to treat when first found. Now it is causing some problems. Was like turning on a light switch. Walking across the room and bang! Leg was pounding and pain pill did not bring under control until second dose six hours later.

Hope this works.

Don
Posted 12/11/2016 10:44 PM (GMT 0)


Hello Don,

Just wanted to let you know I was thinking about you ...

We're both members of "The Chemo Club" and I have been on ZYTIGA for over a year ---

Just for encouragement, I keep the empty ZYTIGA bottles, to track my progress on ZYTIGA --- I think I have 16 empty bottles so far ---

Consulting with my local oncologist around Christmas time --- and then have scans and follow-up consultation at Mayo Clinic in January 2017 --- I'm sure Dr. Kwon and I will talk about ongoing treatments and "next step" treatments when I see him at Mayo Clinic in January.

Sounds like you have some proactive treatments in mind for your case --- let us know how you're faring.

Stay strong in the battle, Don --- just a line of support and encouragement today --- was thinking of you today !

Sent with my best,
"Cyclone" ~ Iowa State University
Posted 1/26/2017 3:00 AM (GMT 0)
Thought I would update this thread. The spot radiation appears to have worked. Still fighting the kidney stone. Uro says he can't see it but the CT scan shows the issue clearly. I will have a few good days and then it is back with a vengeance. Don't know what to do. Thought of asking the uro to do the cannula thing and go in and see if there is something there.

I have stopped the pain pills. But now my finger are burning again. Apparently a Zytiga side effect. My last PSA was 20 (January 6) just prior to starting the Zytiga. We will take another mid February. I feel miserable most of the time. I think I may be getting depressed.

So, appears that spot radiation helped and jury is still out on Zytiga.

Best to all.
Don
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