lindi143

lindi, thank you for awarding me “Best answer”! I hope you get some even better answers.

Hi Lindi143, I haven't seen anything posted by you in a long time. Hoping that this means that you and your husband's journey with prostate cancer is going well. I've been thinking about you though and would love to know if you did the immunotherapy and how it's going. Peace, Kbaj

Hi Lindi, haven’t seen you post in awhile. Hope that means that all is going well for you and your husband. Did he start the immunotherapy? Can you tell that it’s helping? We’re due for another PSA soon... keeping fingers crossed for all of us!

Lindi - anything new? A good friend of mine (pancreatic cancer) died this week. called Mon. nite - could I come over as she was not doing well - the hospice nurse & I convinced her to go to the hosp - At the hosp. that nurse was really not nice when asking questions. I finally went home at 4 AM - back at 10 AM and found her dead in bed. Not a good week.

Lindi - how did the immune therapy go?

Have you read the post about immuno therapy? It does not say it is available for prostate cancer yet your said your husband is on it didn't you? I went to the book store about that book and they said something about it was printed to order or something - like the book is not printed up ahead of time? Whaaaat?

What type of immuno therapy is your husband taking? I thought Greg's recent post did not list any that was for prostate cancer. Maybe there are more.

Hi Lindi, I was just thinking about you the other day. I think our husbands were diagnosed about the same time. I corresponded a bit at the time but hadn't noted anything from you recently. My husband is in a holding pattern for now. Never had a 0 PSA after his robotic prostatectomy and radiation but it has stayed under 1 so our Dr. just has us watching and waiting for now. Looks like your journey has been more complicated. I'm sorry for that. How are YOU doing? It's not easy being the "sick" one for men but it's not easy being the "healthy" one for their wives either. Keep your chin up. KBAJ

lindi - have you gotten a second opinion? This dr. should be telling you this cancer can be controlled, it cannot be cured. Lupron is hormone manipulation and must be taken for the rest of his life. So when you say in your post that "they got it". I'm not sure what they mean. In addition to the Lupron he will probably be on other meds too. Try not to jump to conclusions until the bone scan - hopefully it will be OK.

lindi143 - my husband's journey was a nightmare from the beginning as during his prostate removal (robotic) in Nov 2014 his ureter was nicked and after 3 months they reimplanted the ureter into the bladder only to discover that his PSA was 51 - AFTER surgery. With Lupron it went to almost 0 and inched upwards after being on hormone manipulation.

After I was finished with my treatments I had a B12 deficiency, and would get a B12 immunization once every 2 weeks. Now I am on 1000mcg of B12 daily...it is more convenient than a shot. I believe that a B12 deficiency is one of the causes for neuropathy. My best to you...Russ

I certainly hope your hubby remains well. There is a 'different' treatment which is now legal in the States. You could keep it in your back pockets if the Fates roll their dice against you. I would have no idea if your hubby might qualify. Just something like hope. A friend scampered up to Canada prior to it being available in the States and he has been prostate cancer free with no after effects for years now. Try a search engine inputting "HIFU".

Best wishes.

Could you provide some input on this question please?
https://www.whatnext.com/questions/another-question-for-our-what-it-s-like-series-this-one-for-prostate-cancer

Hello! We hope you're doing well. We have a partner that is looking for people that would be willing to share their experience with prostate cancer with others. They are looking for people that would like to help others by sharing their story speaking to groups of people about it. Others that have had this opportunity report that they thoroughly enjoy it.

If you think this is something you would like to do, just click this link>> https://www.research.net/r/BMWXTJL , and answer a few questions to see if you would qualify for this.

If you have any questions, you can email me at greg @ whatnext . com as always, thanks for being with us here at WhatNext!

When asked a question about how cancer changes people, I think that people today try to be positive for various reasons. They focus on one trait that they feel should be positive.

This weekend, I helped a friend that had bladder stones broke up. She didn't want to ask for anything, but she got pretty sick. She started telling me about a bossy, controlling sister that got cancer. Instead of ordering people around and bossing, she changed her controlling bossy tactics, but she didn't change. Instead of saying, I want water and some soup for lunch-and letting someone do that, she begain saying, "want some fresh ice water please" A person would get that and ask if there was anything else-NO- then 15 20 min later, I need some soup. Then when it was almost ready-- I changed my mind and I need a different soup A person would bring in the soup- help her eat, then the person would be on the phone, mopping the floor, etc and the sick sister would need something else. Oh, I've been needing my back rubbed or whatever before you got the water. I'm more patient now.

So I really doubt that too many people change their personalities that much. Maybe being on lots of tranquilizers blunts the edges on their personalities. I just don't know. I don't think that many change. I just don't think that cancer, and cancer treatment makes us nice people. I think that it makes us desperate.

http://nutritionfacts.org/topics/cancer/
I have a few more....get the book The China Study and Radical Remission ( Kelly Turner PHD )

http://www.chrisbeatcancer.com/ I LOVE this guy.
Dr. Drew Pinsky who is on TV got prostate cancer and has an interesting story you should look up. Also Dean Ornish MD has done some interesting work with Prostate cancer...Good Luck!

Hi Lindi, I read your journey notes regarding the difficulty with your husbands prostate cancer. I wish there was a clear treatment path for everyone, but there's not. It's one of the things that surprised me during the cancer diagnosis' in my family. Neither my husband nor my brother cancer seemed to react as the doctor's anticipated. My husband is beating the odds and his cancer has been stable for 17 months (Thank God!!!); my brother's situation is not so good. Best of luck and don't stop believing in miracles AND science :-)

Hi Lindi,
Hope you and your hubby are having a nice holiday weekend. How did the appointment with the oncologist go? My guy started his radiation treatments this week... 3 down, 36 to go! So good so far. Just thinking about you and hoping all is well. KBAJ

Hi lindi, did you get results of CT and bone scan? my hubs had his colonoscopy today. Had to have one as he was "due" (last one 10 years ago was normal) and you can't have one for at least a year after pelvic radiation. He had 4 polyps which the GI dr said she removed. She said they looked benign but would send to pathology anyway. Moving forward like a herd of turtles!

if there is anything we can do to help, lend support or field a question ask away .... we are here to help.

best wishes

jim

Thanks for thoughts and prayers !

Good luck with the surgeon, hopefully you both won't have to wait long for surgery. My husband's was delayed so he could lose some weight but he has been stuck on a 10 lb. loss for 2 months. Waiting is the worst part.

Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/prostate-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
WhatNext Community Mgr.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter

It's hard to understand and know what to do. I felt emotionally devastated. I did research to get familiar with it and wrote up questions to ask the doctor. Take your time to digest what he says. I highly recommend second or third opinions from other doctors and for me, what the doctors could tell me was waaay better than anything I could find on the internet because cancer is always unique for each person that has it. I researched and found out what the best cancer treatment centers in my area were and wound up picking from one of them for the treatment.

So many of us here at WN have been where you are now. The early days after diagnoses are very difficult for patient and spouse. Your strength of support will mean a lot. Wishing you the best as you two get info, make decisions and move into treatment. You may find help by seeing some of our stories and reading about survivors.
God bless , a survivor

Lindi - Your support will be HUGE. We have all been there, but behind every great man is a great woman. I recommend Dr. Walsh's book about Surviving Prostate. You likely will have time to work through the large book, but be educated, educate yourselves. Post lots of questions. Hang in there.