Welcome new member redheadskier (Lisa) - posting for her husband Frank (G9, mets)

One nervous dude.  Had RP on Jan 6, 2014 and will have frist PSA test in 2 days.  Want to think positive but scared as hell.

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1st PSA Oct 2010 - 6.89

Active surveillance for 3 years and PSA rose to over 11.

RP in Jan 2014.  Gleasen 3+4 (7)

Size = 92 cm

Biggest problem is Incontenence.  Total loss for first month.  Slowing getting some back.  about 20% now.

Thanks BillyBob@388,

I definitely want to be part of the ZERO Club. Blood drawn today now its just sit and wait.
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55YOA
1st PSA Oct 2010 - 6.89
Active surveillance for 3 years and PSA rose to over 11.
RP in Jan 2014. Gleason 3+4 (7)
Size = 92 cm
Biggest problem is Incontinence. Total loss for first month. Slowing getting some back. about 20% now.------------------------------------------------

Ray,
Thanks for your reply. I think I will check out Scholz and Tomasz Beer at OHSU for starters. Our son lives in Portland so we could also visit while we're there. One of my son's roommates is a Dr. at OHSU in his 4rd year of residency specializing in pancreatic cancer. He has asked around and Dr. Beer's name keeps coming up. We get results of the PET scan on Monday and will go from there...Glad you had fun at GFMPH. Sounds like such a great time!

Lisa

Redheadskier and Frank,

I am a G9 and stage 4 PCa patient and I send my best wishes to you and Frank. I was one of the first Provenge alumni on HW and would really encourage you to do all you can for Frank to begin the three treatments. The bone scan (depending on results) may get the insurance to automatically approve it.

We are in the elite bracket for all PCa men. I wished Warren Buffet would pay us $1 billion for getting our bracket correct. (a little NCAA basketball talk).

I will never forget walking into Huntsman Cancer Institute's Infusion clinic for the first time. There is no one or nothing that can prepare a human being for that experience and the huge emotional toll it takes. I did all I could to be stoic and not start crying. One thing it did do for me is to rally my internal desire to really fight to extend my life. At Huntsman, when you are completed with your infusion treatments (for me it was the three Provenge treatments) the nurses come and sign a congratulations song and hand you a blanket that sweet people made and donated. I pleaded with the nurses to not sing to me since I didn't show any signs of cancer and fortunately they consented and understood.

We are very fortunate to have amazing oncologists. Someone posted earlier to get an entire team assembled for you and Frank. Meaning the Urologist Oncologist, Radiation Oncologist and Medical Oncologist. The MO acts as the quarterback for the entire oncology team. I remember someone making the very same recommendation to me. If you need any recommendations, please let me know and we can find a way to contact each other.

Depression is very real and very painful. I will never forget being told that I not only had prostate cancer but I had it real bad and I would have to have adjuvant treatments in addition to surgery and even then......
I think it took me about six weeks to get some of the depression fog out of my mind. The one task that helped was jumping into research which sounds like you both are doing. If that doesn't help Frank, get him in to his doctor and have the discussion and get a prescription for help. It works, I can attest to that. There is nothing wrong in the world for a studly man to ask for help to deal with a various disease.

Sounds like frank is very lucky to have you and your wonderful support and research. I wish the best for you guys. I am in Salt Lake and willing to help in any way that I can.

Redheadskier,

When I mentioned the three treatments, it was not the three you mentioned. Provenge protocol is to administer their product on three occasions (treatments). Once approved for Provenge, the company coordinates with a blood clinic to collect a man's white blood cells, called Leukapherasis. The procedure usually takes about 3-4 hours. The white blood cells are flown to one of their production facilities, scrubbed up and then they bind their bio-engineered protein to the white blood cells, fly them back the next day as one walks into the infusion clinic to have them infused into one's blood. The protocol is for three total treatments (usually spaced a few weeks apart).

The infused product goes to one's immune system and then out to the body to identify, locate and terminate any prostate cancer cells.

It has worked very well for me and others, but unfortunately it has failed some on our dear brothers here on HW.

I am glad you guys have your oncology team formed. Please keep doing your research because it allows you to ask better questions, and the oncologists love it and based on my experience, spend more time in answering your questions because they know you are engaged in learning. I thought I was the norm by doing so, but I was told by so many of my doctors that I was in the exception category. What I have found here on HW is that everyone who has spent considerable time and research, and many doctors exams and procedures are so unselfish with their knowledge that it really helps us all so much.

Please tell Frank to jump on the ship with us. We don't bite and we G9s have to stick together. If you are successful in getting Frank to post, please keep posting yourself. As you can see, we have wonderful spouses, significant others, daughters, sons, etc all concerned about a love one fighting this horrific cancer,

Hello all,
Haven't written for a little while, just exhausted lately. But, Frank's PSA has gone down to 1.67 as of last Friday. We were standing in the hallway of the cancer center looking at the report and were so happy. So, a lot of progress in just one month! I don't know whether that's a good response or PSA should have dropped farther, but, that little number gave both of us a shot of encouragement....YAY!

Lisa

Looks like good news to me, certainly better than PSA still going up or unchanged! Glad to hear it!

redheadskier said...
Hello all,
Haven't written for a little while, just exhausted lately. But, Frank's PSA has gone down to 1.67 as of last Friday. We were standing in the hallway of the cancer center looking at the report and were so happy. So, a lot of progress in just one month! I don't know whether that's a good response or PSA should have dropped farther, but, that little number gave both of us a shot of encouragement....YAY!

Lisa

Way to go Frank and Lisa.

A drop from 15.8 in January to 1.67 only 3 months later is quite impressive.

Keep doing what you are doing and glad my buddy Clearwater (Idaho, not FL) Cowboy was able to make an initial contact.

He and his wife are great people we have gotten to know at last couple of GFMPH gatherings, and I am sure both of you would enjoy meeting them in person when your paths in Idaho cross.

LupronJim

Hello all,

Medonc appointment yesterday:PSA .7 T=23. We were very pleased with these numbers 7 weeks into treatment.

On the other hand, we got a bill today from medonc office visit...we have no more coverage for the rest of the calendar year. It's the fine-print that screws people everytime. Our medical insurance premium is $1200.00+/month, plus $7500.00 deductible, plus out-of-pocket of $2500.00, plus 20% co-insurance. It's crap to be self-employed...now, we're seriously worrying about how much we can afford going forward...

AAArrrggghhh-Lisa

Lisa and Frank,
Sorry to read about the rise. Good news is that the PSA is still very low.

I hope that chemo lowers PSA and resolves the mets for you. It's a tough time of the year to be doing chemo, but you'll be coming out of it in the spring and your view of everything will hopefully be much brighter. Christmas gift idea - a beanie hat to keep his head warm and/or a warm fuzzy blanket (like mock wolf hair). I still wear my beanies/stocking caps even after my hair grew back.

With surgery and radiation still being options for you, you've got more bullets in the chamber. Many other options beyond that.

Good luck next week. We will be thinking about you and sending positive vibes. Lots of love from family and friends helps get through these times. Don't be afraid to tell people what you need if they ask. They truly want to help and whether it's a meal, a ride to the infusion center, or just someone to play cards with, embrace the efforts and use it to reinforce your strength.

I remember my times in the infusion centers. The men all looked so scared. The women seemed much more confident and there were some beautiful women there, even without their hair! I made some friends there and we still keep in touch a year later. I guess I am reminiscing but just wanted to encourage you to make the experience a positive one even though you have to get through a difficult task.

Finally, sleep, water and exercise (all 3 every day) will keep you going but you've got to do them even when you don't want to. You'll know what I mean....
Peace to you and good luck! You can do this!

Dear Lisa,

I just wanted to send you a note of encouragement.  I was diagnosed with metastatic prostate cancer last year, which had also spread to both of my lungs.

They started me on hormone therapy shots  (Lupron), which brought the PSA levels down and also cleared up the lung nodules.  Then I was approved for chemotherapy treatments (Taxotere), added to the hormone therapy shots.  I just finished all six rounds of chemotherapy, given three weeks apart, over the course of eighteen weeks.  My side effects were relatively mild, but I kept active, kept eating right, and kept drinking lots of water.  By some miracle, I was able to get to work every day, for which I was thankful.

I wanted to let you know that the chemotherapy treatments lowered my PSA levels even more, given concurrently with the hormone therapy shots (Lupron).   I didn't know what to expect going into this, so I hope that my story will serve as an encouragement to you.  I'm in the first wave of patients that were treated with chemotherapy added to hormone treatments soon after diagnosis, in accordance with the new standard of care that is now being recommended for patients with advanced prostate cancer. 

Stay strong during chemotherapy treatments.  Rest in the evenings when you can.  Stay connected with family and friends, but don't over-do things.   It's nice to have a friend or relative with you at each chemotherapy treatment, just to help pass the time and for moral support.  Try to take some walks or do a bit of exercise in the days before and after each treatment.   If you have faith in your life, stay focused on that.   Lots of people around me have continued to share their faith and prayers with me, and I have done the same for them. 

Stay focused on interests hobbies and activities and interests that you enjoy, as much as possible.     I especially recommend drinking plenty of WATER before and AFTER each of the chemotherapy treatments.   That seemed to help me tolerate each treatment better.   While my side effects were relatively mild, the side effects usually have a delayed reaction and hit a few days after each treatment.  In my case, my treatments were always Wednesday afternoons, because my oncologist knew that the side effects would hit during the weekend, so that I could continue to work each day, and this plan worked out for me.  Try your best to keep eating right, staying hydrated, and remaining active as much as possible through all the weeks of chemotherapy. 

Hope that you will find a bit of hope and encouragement in my message today.

With caring thoughts sent to you,

Cyclone

Hi Lisa,

It sure looks like our hubbies are continuing on the same path. John's PSA only reached a low of 5 before it started rising in August. We ended up switching oncologist and he suggested beginning chemo, but using 2 different kinds at the same time. His thought is since the ADT only lasted a few months, there are other things in play that the Taxotere alone would not take care of. Guess it acts more like a small cell or neuroendicrine type cancer. So, we started this past Tuesday with Taxotere and Carboplatin. (PSA had risen to 22 by then) It will be done weekly for 3 weeks and then a week off. John tolerated it pretty well. Day 3 has been the roughest. Probably because all of the steroids are now out of his body and he started crashing. He had a long day at work and by the time he got home, he could barely keep his eyes open. However, today he feels much better. I definitely 2nd keeping him well hydrated. Make him start upping his water intake this weekend as much as possible.

Make sure you take some things to the infusion center to keep you both occupied. We ended up being there close to 5 hours the first time. We are thinking about and praying for you both as you start this journey. Hopefully by spring both of our men will be doing much better!

Take Care,
Barb

Hi Lisa,
I am also new to the forum, but my husband Gary has had PC for four years. A G9er too. We live in NO California, so were fairly close in proximity and in dx. I'm really thrilled to have found this forum and I am sure you will be too. Best wishes to you and Frank both in kicking the PC and adapting to the new and nobody wants-to-be-here lifestyle. Try to spend as much time as possible "forgetting" about the cancer once you have a plan in place and remembering to live. Our onc told us right off the bat that his job was to figure out what to do about the cancer and our job was to live our life. It has been very good advice for us in not letting the beast control our lives!