I'm new here~ Call me Kip & my wife M... - Advanced Prostate...

Advanced Prostate Cancer
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I'm new here~ Call me Kip & my wife Molly

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I''m Kip, I was diagnosed with Stage 4 Prostate Cancer Mastitis to Bone & Lungs in July. I started feeling bad in March, (thought I had the flu), we went on vacation but I still wasn't feeling good by the 4th of July & couldn't walk. I made it in to see the doc and the next thing I knew we were headed for CAT Scan, Whole Body Scan & Biopsy(s). They found the Cancer in my lungs & bones. The biopsies determined it was Prostate Cancer. Immediately they started me on Gabepentin, Morphine plus Oxycontin for the pain & Lupron (ADT). I have unbearable Hot Flashes & Cold Sweats and am glad to know I'm not a lone. I'm happy to have found this Blog.

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Hi Kip And Molly,

Sounds like you have fairly rough road ahead. The good news is that with todays medicines and modern technology, your condition will more than likely improve for quite awhile. I'm also new here and can say that the people here are the best that I have ever encountered. You are both now part of an exclusive family. Hang tough, it's going to get better.

That sounds a lot like my husband. Felt like he had the flu this last year. It no symptoms of prostate cancer. Finally went to ER for a swollen foot and ended up being admitted for almost 3 weeks. Is Stage 4 with lymph mode and bone marrow metastasis. He's on Lupron and getting ready to have 6th round of chemo next week. It's been really hard. Hang in there...

Sorry to hear about yet another case of advanced prostate cancer. So glad you found this site where you have many brothers fighting this along with you. We're here to help and support. We know what you are going through for sure, so many of us have gone through it too. We are right with you.

Your case sounds exactly like mine. I just thought I had some kind of flu, but things just kept getting worse until I went in. I had so much pain I could hardly get up out of chair. PSA of 463 and ALP of over 600, lots of mets to bone and lymph nodes. My bone scan so bright I had to shield my eyes to look at it. That thing had more lights than a Christmas tree!

You might want to consider early Docetaxel chemotherapy or Zytiga. These agents have proven to add more survival time when done early on. There have been several studies that have shown success with this approach: CHAARTED, STAMPEDE, and LATITUDE are 3 you can read about and discuss with your doctor. I did early chemotherapy and got an excellent response. My PSA is 0.19 last check, down from 463 in 6 months! I'm also doing ADT Eligard now. The hot flashes often get better over time, mine were much worse when I started.

Let us know how you are doing with your treatments. Call on us when you're feeling down or just need a friend to talk to. We are always here for all of our brothers.

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Hidden in reply to gregg57

Well put Gregg.

Very sorry to hear about such pain. Hope you gain some control on that ...It’s a bumpy road that we are all on. Many men are having success with treatments and living With APC for many years. The bottom line is that this is a fight for survival against a tenacious opponent = a test of will and spirit. Seek and recieve knowledge so that you’re not in fear of the unknown.I pray for you to get to a better place.

Hello Kip & Molly ,Good to know you here with us to learn, I was diagnosed in May,2017 with prostate cancer and was relieved to have found this site, I was certain my life was going to be cut short at 67 years old but I have learned so much about all the different types of anticancer protocols and there is always something new coming out and I have found them here. even though I am not on them I can now make better decisions and not get stress out but to be better informed.

Best always and God Bless

Robert

Keep fighting Kip, we are all in this together.

I concur with all that Gregg said.

Depending on the unique biology of your individual cancer and "mets", the many options now available for managing advanced prostate cancer can extend our lives considerably.

Charles

Dx Nov 2013 Metastatic Prostate Cancer at Age 65

Numerous Bone Mets and Lymph Nodes, PSA 5,006

ADT Lupron ("For Life") + Zometa, PSA Nadir 1.0

Resistance after two years.

Short rechallenge Casodex.

Oct 2016 Provenge

Dec 2016 Start Xtandi, PSA 95

Sep 2017 Xtandi PSA Nadir 1.2

Nov 2017 PSA 1.7

Welcome to our group, Kip and Molly. You have already seen that this is a caring group of friends ... lots of sharing and great advice.

You mentioned experiencing the effects of Lupron. Lupron is a key to keeping us alive, but needs to be managed. Hot flashes do get better, as Gregg said. I actually take gabapentin for them - it helps me a lot. Others get relief via Accupuncture or other treatment methods like taking anti-depressants. I tried Effexor, but the side effects were too harsh for me. Gabapentin has reduced mine by at least 80%.

Lupron also causes loss of muscle mass and fatigue. When you are able, exercising and light weight lifting will help you battle those symptoms and make it manageable.

Since you are new to this journey, I recommend reading Patrick Walsh's Guide to Surviving Prostate Cancer. It is a definitive guide to understanding the various stages of prostate cancer and the latest treatments. Get the latest edition so it has the latest treatments. You can find it on Amazon.

Please keep us posted on your progress. And don’t hesitate to ask any questions. I promise someone on this site will have some insight. It’s really incredible!

Happy Holidays!

James

Ditto on the weights and walking, Kip. It's hard to get up the motivation because the Lupron zaps you, but get tough and do what you can. Ray

Welcome to the group. Sorry about your diagnosis. We were diagnosed in June. We have been attacking at all angles.. using traditional, alternative, and nutritional strategies. If you live in a legal state, I think for pain medical cannabis is less constipating than opiates.. and it is worth a try. After chemo my husbands pain got a lot better so at most he needs is Tylenol. For inflammation, Hemp Oil is legal in all 50 states(if you are in the US) and helps some folks. Watch your blood sugar as the drugs have a tendency to raise blood sugar levels, a lot of the guys are on Metformin for that and it helps slow down the cancer.

Please know that you are in my heart and prayers. I hope you feel better soon, tons of hugs!

Hi Kip and Molly. Welcome. I'd love to have met you both in some other way but this will do :). I just got my first Lupron injection about 3 weeks ago. So far my symptoms have been relatively benign. It might be too early to tell. I'm pretty sure I had a hot flash but no cold sweats. Have there been any other recent changes in your medication?

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Hidden in reply to EricE

Hi EricE,

It sounds like your diagnosis came not long after mine. I started my treatment the end of September 2017. The Lupron helped with the pain right away. I would say I'm dealing with the pain and no plans for changes to my medications yet. The Doc suggested I consider taking "Zytiga" daily, PLUS continue with with my Lupron . We have been reading up on it but I'm not convinced it's worth the cost, (it's expensive) my insurance suggests it could run me $1000 per month after my coverage. :-(

Reading other's posts about their findings & experiences helps . I head back to the Doc coming up Dec 20, when I will have my 2nd Lupron injection. Sending Positive Thoughts and wishes.

M & K

Just a suggestion that might help with the hot flashes / sweats at night -- install a ceiling fan in your bedroom if you don't already have one. It might help you sleep better. Let your doctor know about this too -- there are medications for this. Hope things get under control fast and that you feel better soon. There are plenty of effective treatment options available these days. BTW, I had 'cold flashes' too -- shivering -- but no sweats to go with that.

Hi M and K, I have been on Lupron (Eligard the generic) for 6 years. The sweats and chills slowed down after the 3rd shot. The chills and sweats are caused by the change in hormones in your body. You will soon have all estrogen and no androgens. Before the shot you were 70% androgen and 30% estrogen. This same thing happens in women during menopause when their hormones change. I used timed released Tylenol 650mg 8 hour from drug store for pains and temperature changes, generic form. It did not react with my other medicines. I have metastases in my bones. They are single cell and sink into my bones leaving a pock mark on the bone. There are thousands of them and they can not form tumors while I am on Lupron. The prostate cells (both cancerous and normal) have a spot called the androgen receptor (AR). In order for the cell to duplicate an androgen (like testosterone) must be near or contact the AR. So as singe cells leave the prostate gland they still can not reproduce. When a prostate cells sub-divides it releases an enzyme that is picked up on the PSA test. So my PSA has been 0.00 for 6 years now. This is because of Lupron injections. Now each of us is different and I also have had 72 radiations, first 42 then 30 after 3 years. My life is pretty normal and I can do most things. I am 72 years old and have diabetes, heart disease, and kidney diseases, so I have other limitations. Keep asking questions and we all wish you luck in your journey. There is much to learn!

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Jim, Thank you for all the info! As I'm sure you know we are full of questions we don't even know to ask! Molly

JimVanHorn
JimVanHorn in reply to Hidden

Well the question you may ask is "What's going to happen to me?" The answer is we never heal 100% and PCa goes on and on. Tumors have unique ways of disappearing by chemistry or by surgery or even by prayer. So get a good oncologist to get rid of the tumors for now. The progress of most PCa is slow. They put 12 long needles in my prostate for biopsy (3 times now) and they hurt unless you are in a twilight sleep. From this you get a Gleason score that tells how fast or slow your PCa is growing and how many lobes are involved. This will determine your therapy in the future. Most patients live for over a decade or two and die of something else.

Now your wife and you can learn new ways to make love. I have not had an orgasm in about 5 years. I have to massage and cuddle and do things you both enjoy. You may notice that sex is not as interesting to you, but having emotional satisfaction does not stop. I used to sexualize in my brain all the time when I see people. That has disappeared and I get to know people as people both male and female. I think it is a good thing! We can talk again and remember there are many types of PCa, in different places, in different amounts, with age differences, different insurances, different doctors and different other disease functions in all of us. So this website is just a discussion in general with many varied ideas. Keep truckin'!

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