My husband Mike - love of my Life

[Pennysue1]

My husband Mike's prostate cancer spread to his lymph nodes - lymph nodes are swelling causing discomfort- Taking zytiga also for 2 months - Dr will do extensive radiation January 3rd - Dr said if this doesn't work he will live approx. 6 months to a year - just praying this works - he's the love of my life - praying for all & the families who are going thru this horrible disease - I personally know now the shock, devastation, sadness & inability to understand this blindsiding disease that so many wonderful people have to endure - prayers & Huggs to all

[Jay10]

Hello Pennysue1,

I am sorry to read your post and I do know what you are going through at this time. I send you a big hug and my good wishes to let you know you are not alone.

My husband, also called Mike, is in a similar position at present. He was on Xtandi for a short while then developed Diverticulitis which is causing major bleeding. He is in hospital and has been told that we may have up to a year so here's hoping.

As a wife you are his support and although it's difficult your love for each other will help you get through this.

There are so many brave men out there battling this horrible disease so I send everyone here my prayers and good wishes for whatever befalls them

Jackie

[Pennysue1 in reply to Jay10]

Thanks so much Jackie - praying for your Mike too 🤞🏻

[Jay10 in reply to Pennysue1]

Thank you.

[Jimtjr in reply to Jay10]

Thanks for sharing. I am four months on Xtandi and doing well so far except for side effects. I wish your husband the best and you too.

[AlanMeyer]

That's a beautiful picture Pennysue.

I wish the very best of luck to you and Mike in this very difficult and trying time.

Alan

[Pennysue1]

Thanks - he finally talked me into renewing our vows by Elvis impersonator in Las Vegas after 26 years - Being from Memphis I thought it would be cheesy but it was a lot of fun - he's resting now

Thanks again - maybe everything will work out with his treatments

[gusgold]

Penny,

If all Mike has is lymph node involvement why is the prognosis so dire.

Gus

[Pennysue1 in reply to gusgold]

At the beginning of all of this, in 2012 it was diagnosed as prostate cancer in the prostate only - he was treated with 40 sessions of radiation & the shot you get every 3 months - so everything went well - Dr stopped all radiation & the shot - it came back in 18 months (prostate cancer) in the lymph nodes

[scarlino in reply to Pennysue1]

Penny Sue, my prostate cancer seems to have gone the same way as your Mike's has. I have lymph node involvement as well. I started on Degarelix after 2 years following Proton Radiation. Lymph nodes shrunk and PSA decreased. Started rising again so switched to Lupron. Unless something else is happening I strongly urge you get a second opinion. Doctors giving life expectancy numbers should shut their mouths and just treat. Is Mike at a research hospital like MD Anderson? You may want to consider going there or one of the other state of art hospitals and get your second opinion. Don't let your doctor lead this. You both must take charge of your healthcare. I know that is difficult at times but it's important. God bless you both on your journey.

[Pennysue1 in reply to gusgold]

Gusgold - He did have PET scan - waiting on the results - we will let you know - having back pain - 3 weeks straight -

[Pennysue1]

Now mike is scheduled on Jan 2 for more radiation upper & lower due to this lymph node on his neck very swollen & his left lower leg very swollen- Dr did scan & Pet Scan & told Mike if this doesn't work you could die in 6 to 12 months - he's also been taking Zytiga (chemo pills) for 3 months (1000 mg a day)

[Dan59 in reply to Pennysue1]

I am always surprised to see the chemo warning on my zytiga when it comes, It did not used to be that way , and really zytiga and xtandi are hormone manipulations, testosterone reducers, the only reason I can think of they call them chemo pills is so the insurance will not blink at the high price tags.

Dan

[wifeofvet in reply to Dan59]

i asked the oncologist why the warning and he said if someone else were to administer the pills they should not handle them without rubber gloves....especially women.

[Daddyishealing in reply to Pennysue1]

Be wary of doctors giving time suggestions , because they truly don't know . I know someone that was given 3 weeks to live and it's 6 years later . get a second opinion. something doesn't sound right because it sounds like stafe 3 and I don't get why the doctor is giving him such a poor prognosis. get a second opinion, please . xo

[Billmac in reply to Daddyishealing]

I also was given a year to live. That was 12 years ago. Get another opinion.

[Daddyishealing in reply to Billmac]

Billmac, that made me smile and smirk and just shake my head at how doctors can be so knowledgeable and so clueless. keep trekking champ xoxo

[NPfisherman in reply to Billmac]

you gave me a smile....thanks....a bit down today...

[Dan59]

Penny, I would get a second opinion, first of all there is an excellent chance the zytiga will work and then there are other drugs after that. I can not believe that some doctor somewhere gave that dire of a prognosis for lymph node only mets. Doctors should not pretend to have a crystal ball. I have read of much longer survival statistics in Lymph node only disease. In my case I was diagnosed with wide spread bone and Lymph node mets and given a year to live back in 2006, for any Doctor to erase the hope we have should be a crime done be a frustrated mean man. I wish you both the best, read all you can, get an expert Prostate medical Oncologist, preferably one associated with a major learning center, and enjoy life in between appointments, but again it is my feeling the zytiga will work well for a good long time, even shrink the nodes as it did with me, then there is xtandi, Medical Oncologist, what is your approximate location maybe others will recommend one.

You guys are not alone, we are all pulling for you

Dan

[Wings-of-Eagles in reply to Dan59]

I agree totally with Dan,well said

[erjlg3]

Hi PennySue,

Think positive the 2 of you. Please get a 2nd and a 3rd opinion if necessary. LG's Doc said 5 years if it escaped the prostate to 10 years if it didnt....and it's now 13 years and it did escape the prostate. Researcheck and keep asking questions.

I think it's adorable renewing your vows in Vegas with Elvis ♡

Take care of YOU too.

Most sincere,

Jackie

[taylorcraft in reply to erjlg3]

I use hemp drink couple droppers full ea day and canver found by mri wih 5 nodules and aftr on y on hemp dr has hard timr inding the nodules and ssked what i ws taking > nbut psa stays about 60 to 80 bnut no pain no where i am 89 ,

[erjlg3 in reply to taylorcraft]

That's awesome taylorcraft!

[curious-mind]

Dear Pennysue1,

Definitely get a second opinion from an oncologist who specializes in prostate cancer. If the cancer has spread only to the lymph nodes (and not to bones or other organs), then based on what we've learned from my dad's oncologists over the last 12 years, it makes absolutely no sense for this doctor to make such definitive and dire pronouncements. My dad's cancer did spread to the bones a few years back, but we're fighting it here and now.

After Zytiga and Xtandi, there are other treatments as well: Xofigo, chemotherapy, estrogen patches, DES pills, etc., etc. But even before all that, there are ways his hormonal therapy could be made even more aggressive (adding casodex, avodart, etc.).

Don't despair based on what his doc said, just get another doctor's opinion on it, but someone who is an expert in prostate cancer treatments.

Best,

Arthur

[alsam]

Hi Pennysue and Mike...I have to say that I agree with many of the comments passed with regards to obtaining a second opinion ...I am a 5 yr veteran of the disease...Diagnosed in Jan 2012 with advanced metastatic prostate cancer....PSA of 509, Gleason of 4+3=7...This meant it escaped the prostate and was now in my bones...yet after six months of treatment of Zytiga (Abiraterone) and Prostap (Testosterone reducing agent) I saw my PSA lower to less than 0.1ng/ml...(No Chemo or Radiation treatment at to date) ...To date my PSA remains at less than 0.1ng/ml....I am what you call a success story and you can be also...It was not an easy journey at all but I never gave up and I had the love of my wonderful wife throughout...In 3 days time I attend my cancer treatment centre for my new PSA results after a 5yr struggle with the disease...I am still on the same medication as prescribed in 2012....I am confident that the news will be good and a wonderful start to 2017...GET A SECOND OPINION and have the same start to 2017....I wish you both all the best....

[Daddyishealing in reply to alsam]

Congrats alsam and happy healthy new year

[alsam in reply to Daddyishealing]

Wishing you also a wonderful and healthy New Year...

[Daddyishealing in reply to Daddyishealing]

When you get your celebratory 2017 results , let us know do we can share in your victory. very inspiring xoxo

[Pennysue1 in reply to alsam]

Sounds wonderful for you - enjoy 2917 - we will get second opinion & continue the Zytiga plus radiation- happy New Year

[wifeofvet in reply to Pennysue1]

does your husband take prednisone with the zytiga? it's absolutely essential to protect the kidneys. make sure he's taking it along with zytiga. when kidneys go boom, blood pressure rises.

[TommyTV]

Like Assam above, his diagnosis is virtually identical to mine, PSA 600+, Gleason 7, multiple bone mets. I was diagnosed just over 5 years ago, and my PSA has stayed below 0.1 throughout.

I recently found out my life expectancy at diagnosis was 6 months! Good job no one told me as I'd have spent up, and be broke now.

Instead, I've had a great time, carried on working and socialising and really enjoyed life.

I think a positive attitude is paramount, and to be given such a poor outlook is a disgrace, he should have kept his mouth shut, not removed any hope and put you in your position of fear.

My brother was in hospital recovering from major bowel surgery after bowel cancer. He was dozing in bed one morning when he was woken by a doctor.

" Mr Tetlow, we're sending you home today. There's nothing more we can do for you"

My brother was totally distraught... until the doctor explained what he actually meant was that he was well enough to go home, and didn't require any further nursing care. They should choose their words more carefully!

[Pennysue1 in reply to TommyTV]

You are absolutely right - Happy New Year -

[Hidden]

Two words, second opinion. 2 years ago my lymph nodes were one big cancer factory. so were my bones, (psa 850), now they tell me they can't seem to find my cancer but I should stay on Lupron and casodex for the hell of it. Bottom line is these wackos running around wearing white jackets have no clue when anyone is going to expire. All they are telling you is statistics that they read. Your husband isn't a statistic, he is a man, a fighting man. Tell us how things are going in a couple of years.

[Pennysue1 in reply to Hidden]

I will - zytiga is making him a little dizzy - we're praying for the best - happy New Year to you - keep fighting hard - as we will too 🙏🏻🙏🏻

[Hidden in reply to Pennysue1]

My wife tells me that I have been dizzy for the past 35 years, and she is right. You both have a long way to go, happy new year.

[jeff001]

Time for a new Doc. Cancer is devastating enough , you don't need negativity from your doctor . I have been through most to what you're going through now . Started in 2011 and for the last three years in experimental program at Fred Hutchinson In Seattle , a great caring team of professional .

You will be in my prayers. For myself with out my faith and the caring from my medical team I would not have survived this long.

[Pennysue1 in reply to jeff001]

Thanks so much - Happy New Year & your incredible strength - will try to be strong too

Penny and Mike

[Gecrellin]

My prostate cancer was already in the lymph nodes and bones when I was diagnosed nearly 4 years ago. At times they gave been very swollen, especially in the groin. That caused a lot of swelling in my legs. On my current chemo of docetaxel plus carboplatin the tumors have shrunk considerably and the keg swelling is gone. Hopefully a different treatment will help your husband. As others have suggested, being treated at a research hospital with a prostate focus is a great idea. Also, life expectancy estimates are basically worthless. Don't give up hope.

[Pennysue1 in reply to Gecrellin]

Thanks - and Happy New Year - Research hospital sounds good - we are near mayo in jacksonville, Fl - sucessful treatments to you too - got to keep trying 🙏🏻- thanks for sharing

[Dr_WHO]

Sorry that you have to go through this. Please ASAP get a second option. There has been a lot of recent developments. I have G 8 T3N1 Ductal (rare which spread to the lymph nodes). Operated last April where they took out 14 lymph nodes and the prostate, 38 rounds of radiation and Lupron.

[j-o-h-n]

To Pennysue1,

Congratulations on your second vows, you make a great looking couple. Mike will be around a long time so you two can enjoy your third vows. Good luck, good health and a happy healthy New Year to you and to Mike.

j-o-h-n Saturday, 12/31/2016 9:12 PM EST

[Daddyishealing]

Happy new year penny and mike. thus year is so not the end. it's the beginning of a journey but I have a pretty good feeling that I'll be saying happy new year to you in 2020! enjoy

[KingRasP]

Pennysue 1 make each day count. Bear hugs for you and the love of your life.

[Darryl Partner]

Just in case you missed this: healthunlocked.com/prostate...

Prostate Cancer Caregiver Community Launches!

You have to take care care of yourself if you want to take care of the man in your life with prostate cancer. Our new community is a place to share strategies for all aspects caring. Emotional, medical, relationship issues, fear of impending grief, sex, love...everything that caregivers feel and think about, but may not feel comfortable discussing in a forum of men diagnosed with prostate cancer.

Please join at: healthunlocked.com/prostate...

[Apollo123]

Hi I was diagnosed last year with prostate cancer Gleason 9 with only spread to lymph nodes in pelvis and chest given a low survival prognosis by a very negative oncologist. I was put on Zytiga, Zoladex and Pred since then my PSA has stayed at 0.01. This site made me realise that oncologists don’t know everything, each man and his cancer is individual. He has hope and many many years ahead of him with the correct aggressive treatment plan. 👍

[mikell]

Penny Sue, I've now had my second infusion of Pluvicto. It's newly approved by the FDA and at this time I consider it pretty much consider it Last Chance Gulch. I had to have a PSMA PET scan. to see if my cancer cells had PSMA expression and, seemingly fortunately for me they did. The term used was "avid". The first infusion proved difficult. It was only 10 minutes followed by an hour observation, including with geiger counters. In the days following I ached in every major known metastasis. I also seemed to lose about 75% of my strength for which ultimately resulted in a fall. I went back into the hospital which provided the infusion, the University of Chicago Hospital, and remained there about a week where until I was released to a rehab facility, where I currently am, hoping to go home in a week or so. I should note that I received my second infusion almost a week ago which was much, much less impactful. They are currently watching my CBD & PSA blood tests, to see if I can proceed with third infusion in about 5 weeks. A PSA reading a week into treatment was over 4000 and the last one almost 2 weeks ago was about 500. Time will tell, but I'm hopeful.