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Advanced Prostate Cancer
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Prostate

Hello. I am Susie and my husband was just diagnosed with Prostate cancer with probability that it has spread to three different places. We are just in the process of starting chemo pill therapy, Lupron injections, spinal biopsy this Wednesday, and then on to prostate biopsy. I am open to all suggestions and I know at this time it will be a long road ahead of us.

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There is no "chemo pill" for prostate cancer. What he probably received is bicalutamide (casodex), which is an anti-androgen. If the spinal biopsy is positive, there is no need for a prostate biopsy.

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Yes. It is Bicalutamide. Although at his next appointment on the 25th they are going to change to something stronger than this. Not sure what. Thank you for responding.

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Well, if metastasis is confirmed, they will probably add abiraterone (zytiga) with prednisone. Here is a summary of options for his current diagnosis:

pcnrv.blogspot.com/2017/06/...

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You are very new to the journey and processing information, emotions, and stress. The terminology and details of prostate cancer diagnosis and treatment are confusing and require an investment of time. The group on this site is supportive and informative beyond imagination. Often Doctors give written summaries of visits and tests. It would probably be helpful to write words from the Doctors to get some help with digesting all that is coming your way. There are a lot of very informed people on this forum and Tall Allen is one of the most generous with time and information. In my limited experience, which is anecdotal for the most part, and personal, I wonder what information informed the treatments you are already receiving.

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Yes. Very new. I have started a journal with everything written down. Not sure what your sentence meant.

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In my case, a prostate biopsy began the journey. I had a very low PSA at diagnosis, which is not as unusual as I thought. After my GP felt something in my prostate with a digital examination the biopsy of the prostate informed us that there was aggressive cancer in my prostate. If I understand the note above, your husband has received treatment for advanced prostate cancer, bicalutamide, without having had either a prostate biopsy or the spinal biopsy that you said is coming next. How did they know he needed to get started on these treatments? I apologize if I misunderstood your words.

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I also dont know if there are other ways to conclusively know that Prostate cancer is active without a biopsy.

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His psa was 358. Exam was his prostate was large, hard and irregular. His Doctor, a urologist specializes in prostate cancer. We will see a Oncologist who specializes in the prostate cancer also for second opinion.

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Don’t blow a fuse thinking you need to be an expert at pc . Alot of medical jargon . If something doesn’t feel right , get a second opinion . In time you will know more about pc than you could have every imagined . Stay healthy yourself . It’s easy for caretakers to suffer much alone with their loves .. Take care ,,you’ll get through this together ...

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My husband was diagnosed on the basis of PSA and alkaline phosphatase alone. Apparently, once you hit that 1000+ AP range, there's just nothing else it could be.

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My PSA never went over 20 .. so many variations in this disease , yet hormonally we suffer much the same . Women know all to well the power of hormones . Us men learn now what that’s like . We get castrated if all goes well it starved the pc . That’s happened for me. Hope that it happens for him also . My wife’s love and care for me is why I’m here today. I accept my lot as gods will . Let’s get your husband into treatment and recovery and back to life . I pray for his radical remission . Radical remission is a book title of inspiring stories of people that went into radical remissions . Take care

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That's right. When I was diagnosed, they made me get a biopsy before starting treatment with a PSA of over 350, Alkaline Phosphatase of 605, and a bone scan that lit up like a Christmas tree. Delayed my treatment unnecessarily for 3 weeks while I was in extreme pain.

If they had given me Casodex for just a week, my pain would have improved noticeably and if my PSA was rechecked it would have come down. It's good to go ahead with a biopsy, but don't delay treatment to do it when it's obvious what it is.

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The variety of our experiences is interesting. My labs have been better since diagnosis then they were before. They weren't bad before but I did a lot of lifestyle adjustments. The only sign of Pca was a nodule which the urologist recognized and my GP was more causual about, but recommended an expert to look. Even as the PSA grew and METs started to multiply, there is no evidence in my other labs.

I now understand those who are saying if the evidence is mounting with several markers, then it is time to get busy. I had not heard of certain diagnosis based upon anything other than prostate biopsy. Thanks for the information.

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You're doing the right thing by writing things down. I keep a three-ring binder of notes, research, etc. Remember to breathe and take care of yourself, too. The emotions I felt at the time my husband was diagnosed at Stage IV still surface from time to time, but I've learned not to worry about things too far into the future. There are lots of treatment options, even with bad news on staging. Stay in touch.

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Not worrying is a great accomplishment .. cudos

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I do my best, Lulu. But those dark thoughts creep in from time to time.

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I’d be lying if I didn’t if I said I’m any different . As long as the good days outweigh the bad I’m A OK . The bad days I want to hide my head in the sand like an Ostrich ..

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Hi Susie,

I'm pretty new here myself. My Dad was diagnosed w/ Stage IV PC and numerous bone mets in Feb of this year. He is on bicalutimide and Lupron at the moment. I'm sorry you have to be part of this fight, but being on this forum is a great help. There is so much support and so many knowledgeable people just a quick message away. They are absolutely wonderful! Please feel free to reach out - we all know what you're going through. Very best wishes to you and your husband on your healing journey.

In solidarity,

Sunlight

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Youre a wonderful daughter . A fathers greatest riches . 🥳

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Lets wait for the Biopsy of the spinal area. What they may be talking about--this unknown pill to follow may be Zytiga with Prednisone. So at this time just love up on your husband, and if it is just 3 spots that can be reached with Radiation, then outcomes can be very positive. I assure you there are enough tools, and protocols and drugs at our disposal today, that there will be good outcomes ahead.

Nalakrats

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Wow. A great group. Thank you all. I will have tons of questions and it will be a process to absorb.

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While loving up on your husband, remember to take care of yourself!

Nalakrats

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Hi Mom! I’m here too. Love that you are in here asking questions. XO

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Did you get my reply? Haven’t quite figured out how to reply.

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Just click on “reply “

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you can "reply" either to an individual post just below it or to the original poster at beginning or end of all posts.

Remember everything you read and hear is more info, overwhelming at times, but your knowledge will increase and more informed decisions is the result. Trust but verify till you are satisfied you've done the best you can.

Every choice has consequences. Together you guys will work it out the best you can. Remember we are all quite different chemically therefore what works wonders for one may/maynot work you.

Also join in immediately with a couple of local support groups. Like this large 8k member online group a local monthly face to face may have 40-120 people but they are now your new experienced peers and closest friends to add to your "personal" PCa treatment team. Feel confident in them or change individuals quickly.

2Dee

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Thank you. I will look up that website.

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There are weekly support groups run by Malecare that are meaningful and usually have 10-12 people talking with each other for 90 minutes Malecare.org

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Lulu700 just replied, "My wife then my girlfriend and I cried like babies for two weeks after my diagnosis...".

I think he meant to type "My wife (who was then my girlfriend) and I cried..."

But ya never know! Some of these guys may be older, but pretty darned frisky right up until they start Androgen Deprivation Therapy (ADT). The Girlfriend's just out of luck!

Ha. Ha.

Charles

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I m no scholar . Sorry for my improper English . Take care .

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No, I'm sorry, Lulu700. In hindsight, my trying to pull a little humor out of someone else's sincere and innocent Reply wasn't necessary. I apologize.

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You kidding? There is no offense taken by me with humor . My English before APC was good . Now I can’t remember spelling of simple words .. I am sorry to the group for my bad English . Keep rolling ctarleton ! TGIF ✌️

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Thank you. My daughter found you and gave you to me❤️

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If we all put our heads together we can find solutions to much . Strength in numbers and friendship . We can relate to each other . Take care.

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Hello Susie and "welcome" to the club you and your husband never wanted to be a part of. Like others have said, you are at the beginning of a process that is scary, frustrating and life changing. There is so much that you will learn about this disease, but you will need time to absorb the information.

Right now, please try to relax. Enjoy each day and don't let worry consume you (it didn't work for me, but PLEASE try.)

This is a great forum to participate in. There are lots of knowledgeable people here who can give you ideas.

At this point, make sure you feel comfortable with the health care team that you are assembling. Ask lots of questions, then make your choices. Ask your team if they have a nurse navigator program. If they do, take advantage of it. (The nurse navigator can help answer questions (both medical and financial), arrange auxiliary treatment like nutritionists, massage therapy and psychologists, etc.)

I also suggest you bookmark this link: nccn.org/patients/guideline...

It will help you understand the thought process your physician is using in your husband's treatment.

You have lots of people cheering you on and wishing you well. All the best.

Rod

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Really? Massage therapy? My health plan sucks big time.

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Hi monte1111. The nurse navigator system is provided by the oncology department of the hospital system in my city at no cost to me or the insurance co. The nurse navigator will help patients with the many aspects to treatment that do not require the time of the physician such as financial counseling, accompanying the patient to appointments to take notes and help explain treatment choices, etc. The massage therapist they referred me to is specialized in treating cancer patients and I pay out of pocket for that. I also was offered three visits to a psychologist for free, and took them up on one of those visits so far. 😎

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Free is good .! The massages sounds great . Keep healing .

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I’m on Medicaid Medicare, don’t need much now Thank God . When time comes to start up operations ,we will see how the “ cheap route antis up”. TGIF monte 1111, by the way , what are the four 1’s signifying ?

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Hey Scott, hope you are in Vallecito already. Was 106 degrees here the other day. Takes a couple of weeks to get used to the triple digits. So glad you were able to get the Medicare. Takes a load off! Kinda wished I'd retired at 62 and had some great fun instead of 66 and go straight to chemo, do not pass go. Plan to have a couple of extra beers for daddy day. I think the four 1's stood for something deep and profound at one time. But now, I can't remember. You and the wife enjoy.

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We’re stuck in some heat in our desert home. Wonderful 8 months of the year. Harsh in summer . We are selling and moving up to a cooler climate of Prescott. I’m hanging up my snake stick . Moving lulu and wife to a more hospitable year round place . Downsizing to a positive place for wifes future prosperity and comfort ..

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Very nice. When I was in service my family lived in Prescott for about a year. By my dad's research, Prescott and San Luis Obispo, CA were his dream spots. But alas, the jobs were in the Central Valley of CA and South Dakota. He was able to retire to Arroyo Grande, CA. But by then his health had made him almost housebound. Gotta grab your dreams when you're young. Am sure you, wife and Lulu will love it there.

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Thanks much monte ., 40 out of 58 of my years were on the desert floor . I loved it . Change is good . San Luis Ob is nice . We can always hop over in the summers . Take care monte

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All great advise. I just want to emphasize the exercise part. Preferably with some type of resistance/weight training. It will help in so many ways. Feeling better, sleeping better, less fatigue and yes...actually proven to fight the cancer. He won’t feel like it sometimes but kick him out of bed and off to the gym. Either hire a trainer regularly or if costs a big factor, at least hire a trainer once to set him on the right path. It saved my quality of life.

Schwah

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👏🏼

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This is the start of your journey.

You will find other experiences a help but PCa very much has a mind of its own. It doesnt have a predictable pattern. It can move and change in a different direction.

Its basically about reacting to it when it occurs. Read about the basics and understand how they treat them.

Once it breaks outside the prostate were at its mercy. The Gleason grade is so important to know how aggressive it could be.

Lymph nodes, bone mets, spinal compressions, hip problems and soft tissue inflammation

Hope the organs remain free and the bone problems can be managed.

Cope with tiredness, get diet and exercise to help with this and manage fluids as it really helps.

Good luck.

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Hydrate! So important fo everyone.

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This is the place to be for all kinds of good information. So sorry that you're a new member. I've been on this journey for 18 months. My PSA was at 800. What a surprise at the age of 66. My medical oncologist wasn't worried about much else with the phosphate number at 3000 and a psa of 800. Was on casodex for a month then on to zytiga and prednisone daily and Lupron shots every 3 months plus monthly infusions for bone strength. Lots of Oscal vitamins plus lots of b-12 shots. So scary at first. Went from never being sick to a new life fighting prostate cancer. There are so many great people on this site with all kinds of good information and advice. There are people on this site that have survived this beast for many years. Some 15 years and longer. It is a change in your life, but after a while you learn to live with the adjustments and for me, I've learned to enjoy so many wonderful things in life that was overlooked for years. I try to be active and light exercise seems to really help. For me I've learned to enjoy time with my wife and also I enjoy a large bowl of ice cream. My only vice. Chocolate Chip is the best. Can't help it. Everything will be OK.

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Chocolate Chip? J-o-h-n ‘s favorite also . Great attitude . Thanks

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Welcome To your Husband Susie. Please encourage him to join our forum himself there is a wealth of knowledge and information here that he will find extemly helpful while battling APC. As I have read from other Brothers previous posts you do need to take care of yourself more now than ever before. Your husband will be on an emotional rollercoaster in the coming months so you need to be there 100 percent. Stay positive Cancer hates that, research as much as possible for all of his opinions, and most of all be comfortable with your medical team. Never give up never surrender. Leo.

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Sorry to hear the monster has another victim, I am stage 4 here, Mets in the spine,ribs and lymph nodes. My doctor went straight to chemo, taxotere,with a Neulasta shot next day, then lupron and Xgeva shots monthly. Going on 35 months now with scans scheduled July 1. You don’t say how old your husband is but don’t be afraid of the chemo option. Good luck. 👍

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You have already received sound advice from the forum. Your journal and your presence are CRITICAL for your husband. My experience as a patient was one of being overwhelmed with the emotional and mental impact of the information coming my way. I just stopped hearing it. My partner was with me and taking notes. That made a huge difference in confidence and in not missing things. You are essential. One of the men in my support group has a lovely, smart wife but she doesn't "want to hear about " so he feels list and abandoned as he tries to deal with the many decisions, terms, words, ac- ronyms and personal emotions. Susiest, you are essential. BTW did you notice the abbreviations list on the forum page?

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No I didn’t. But I will go back and look. Lots of abbreviations that I am not familiar with —yet.

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Susiest,

Besides your journal, I suggest getting a copy of every report from any test. Also get a copy of any imaging discs from mri, bone scans, etc. All you need do is ask for them.

All the best

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Good idea. MRI and bone scan are done. Wednesday spinal biopsy. Thank you.

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Have them do a genetic workup on the biopsy materials..There are immunotherapy treatments that are VERY effective if he has the right genetic factors. Rare, but worth looking at...

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Hi. We have done a genetic test for Markers. Will get results in a few days.

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This is only a suggestion... visit mycancerstory.rocks/ which is a cancer protocol that my husband just started last month. It doesn't matter what cancer and what other medical protocols are being used. My husband has stage IV prostate cancer with bone mets. He has just recently gone ADT resistant after 3.5 years. It's early for us but he is starting to see improvement in his PSA and ALK and more appetite. There is a complete story about it on the website. Also a fast growing facebook group wich you might want to join to connect with others who are doing this protocol for support. Hope this helps!

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Adt fours years for me so far . APC is a master of disguise, knows how to hide , them whammo! Best wishes in this round .when it goes good for one it’s good for us all . Hang In there.. the longer I’m

Clear the more impending the odds of resistance . I dwell on today . Most of us know that the pendulum swings both ways in time .. Take care ...

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Susie, exactly the same diagnosis as mine 7 years ago. Treatments sound like mine, long road but your significant other will be with you for many years to come. Tell him ( give it hell Harry ) Best. Wishes Ray Hill

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Thank you. This is a great group and I’ve only known about you for about 24 hours.

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Finding this support gives you real time knowledge from those experiencing the same . 🙏

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Step away from the computer. Go have some fun. Candlelight dinner or something you both enjoy. The roses still smell pretty. (If you like roses, they kinda gag me.) Plenty of time to become a prostate cancer specialist. Enjoy.

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Susiest5457: I suggest you seriously consider balancing all the recommendations and information you've received with Monte111's excellent advice.

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APC is a real slap on the face .The initial trauma of dx was crazy for me . I do understand the horror. . So do you . But your correct to not let us go nuts over stats and APC .. Easily said , wasn’t easy for me to do . I’m better now . I relish life. Good days bad days. Take care Monte . Great advice , watch out for roses. They all have a torn .

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Welcome to the forum Susie. Just wanted to add to the other voices that there is hope! I was diagnosed almost 8 months ago with too many metastases to count. I've now come out the other side of the storm, am feeling much better, and looking forward to returning to work next month.

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Thank you. This forum is making me feel hopeful.

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Hope springs eternal . The will to live is powerful stuff . With love we have reasons to suffer what we must .

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Oh yah! God Bless!

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Greetings to Susie and to her daughter Teacha, Take a deep breath (both of you). You've come to the right place for information. Pca is slow growing so you don't have to go nuts knowing that your husband/father is part of our club. Post here often for info and for venting. We here are great at venting, so you'll be in good company. Now if possible please tell us info about the boss "his age, location, scores, treatments to date, treatment center and his doctor(s) name(s). I know you mentioned some of this info above but I'm too lazy to review all those posts again. BTW all info is voluntary and it helps us help you and helps us too. Please respond in a future post (not today and not to me). Thank you...

Finally laugh, laugh and laugh and take care of yourselves too.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/10/2019 3:45 PM DST

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Hahahee ! You are a great dude! Dude.

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ahhhh thanks LU.... BTW I have some chismes about uncle Harry and Aunt Edna that I'll fill you in at the family reunion in July...Remember, the same as last year, BYOB....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/12/2019 4:40 PM DST

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Be there or be square ..

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I just thought better about it.... if you're going to be there.....then I'm cancelling out....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/13/2019 2:36 PM DST

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I’m always a no show . You’ll be o k ...😎

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Thanks for letting me know... then I won't have to cancel the personal private jet.....

I'll save some potato salad for you and the misses....BTW I'll give aunt Edna a kiss for you but only if she's finally using underarm deodorant.

Good luck, Good Health and Good Humor.

j-o-h-n Friday 06/14/2019 5:51 PM DST

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Susiest,

I will second several suggestions that others have made. My wife has accompanied me to every appointment and takes essential notes. She also brings along one of those small digital sound recorders and records all discussions. Always ask permission to do this first, but we've never had a Dr. decline. Sometimes if the notes are ambiguous later on, we can bring up the audio and listen to the discussion again to clarify. And yes, ask for a CD with each scan. At MD Anderson at least, they will write it for you in a half hour or less.

I also second the early use of chemo, if called for. Hit it hard and early. With such a wonderful advocate as you, he'll get through this.

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Thank you so much.

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👍

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Sorry Susie, but my husband passed away 3 months ago yesterday. He fought for 3 1/2 years when they first said months. We were able to travel At times and had many family gatherings with all the grandkids. I don’t mean to make you feel worse but I just didn’t want you to keep looking for a response from Jim. And he would have. He was the most caring person you could know. Everyone said so. Please don’t give up. We knew Jim’s cancer was terminal at the start so we were lucky to get so much extra time. I pray for you and your husband. You have hope and remember many do recover. Blessings on you both.

Charlene Thompson.

(I was going through his phone when I saw you were looking for some help.)

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Hi Charlene. I am so sorry for your loss. Maybe you could delete his name from this group. I am interested in this forum and his name came up. I didn’t specifically ask him a question. Again sorry.

Susie

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Such truth! Thank you . Peace to you 🙏

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