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Wives

Are there many wives of men with Stage 4 Prostate Cancer in this group?

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Hi - I'm one of the wives - or as I like to call us, the warriers on behalf of our husbands!

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I am too.

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Follow this community too. healthunlocked.com/prostate...

Also, please remember that there are husbands of prostate cancer men, too.

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Sorry, Darryl! Very unthinking of me. Of course there are! If you have tips to share, please do so. You are one of us, too!!!

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Hi there Darryl! Great point! Nice to meet you!

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Yes, met. to spine and ribs. Diagnosed on August 10th, 2018. Age 51. I am heartbroken!

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Stay hopeful! That's what we're here for. My husband as diagnosed 5+ years ago at the age of 53 with a similar profile. He continues to defy expectations.

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Thank you!!!... What is so hard right now is that when he has pain, he feels so bad. Today was one of those days!... He is on lupron, zitega, prednisone and zometa. We think the meds are causing the pain. Has/does your husband experience pain and fatigue?

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My husband's meds are similar - zytiga, prednisone, lupron and xgeva. He has a ton of fatigue and some nausea. He gets a once weekly infusion of IV Vitamin C - 100 mg - which helps with the side effects. We are experimenting with the best way / time to take zytiga as from the feedback I've read from others, that may make a difference.

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P.S. Also for the pain he takes medical marijuana (oil) - we are lucky to live in New York where it's legal. This helps alot with the nausea and also increases his appetite. But for when he has intense nausea and can't keep anything down, his doctor prescribed a prochlorperazine suppository which works great.

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Other strategies that help with the pain: Infrared Sauna - we purchased a home unit which wasn't very expensive. And he takes a lot of baths with Epsom Salt and Food Grade Hydrogen Peroxide. Works wonders! The latter was a trick I learned from my running coach who would soak in this bath after a long run - or marathon - to ease sore muscles - and I've been doing that for years.

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Thanks for all the info. Let me know about the timing of Zitega. We have been taking it at 7:30 pm and then eating at 8:30. We are thinking about changing - eat at 7:30 and take zitega at 9:30 pm. Maybe he won't be so tired so early in the evening?????

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My husband is going to switch back to taking it in the morning on an empty stomach. He tried that in the beginning and I can't remember why he switched to taking it at night with food. Will let you know how it goes.

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Yes, please let me know. We were told to take it at night because it causes fatigue... Many thanks for all of your insightful information!

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One more thing I forgot to mention is that he takes Low Dose Naltrexone for pain + it has a lot of anti cancer properties apparently.

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I have always taken zytiga 1st thing in the a.m. on an empty stomach. Then eat about an hour or 2 later. I workout often 1st thing in the morning and find exercise helps fight fatigue. Even just walking helps.

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Stage 4 here with metastases to spine, ribs, shoulders. I take my Zytiga as soon as I wake up after 6AM. (I have the water and pills on my bedside table.) I then lounge around for an hour reading the paper, then get up for breakfast along with my first prednisone of the day. Then I start my day. I get really tired some days at about 3pm which is when I take a short nap if needed.

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Hi

can you give me some details on the home sauna, where purchased, rough cost etc? I live in UK

Thanks

Jan

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Sure - here's a link to the one we purchased when we were living in Bath.

amazon.co.uk/Firzone-FZ-100...

We got a similar one once we moved to the U.S. If he can't exercise this is great - as it raises the heartrate - gets rid of alot of toxins through sweating. Some consider it moderate hyperthmia.

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Man Thanks

Jan

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If he’s on zometa anyway he should also take Celebrex. Latest studies showed the two combined reduced deaths by 22%. Tall Allen has more on this subject if need be for your MO. The Celebrex may even help with the pain and has fee side affects. Exercise is the best answer to the fatigue. Seems counterintuitive but many voices here will tell you so.

Schwah

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Agree exercise really helps plus Celebrex 200 mg daily

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Hi, I am sending a link that will reference what can happen from mets to the spine. My brother had a spinal cord compression which the ER did not catch. Basically, the ER ignored his symptoms. Had they caught it in a timely manner, he would not have become paralyzed. Only the MRI detected it, but by the time they figured it out, the surgery performed to correct it was not effective. You have about 3 -4 days from first symptoms. The paralysis is was caused his death; NOT the prostate cancer.

Good luck and bless you all.

ncbi.nlm.nih.gov/pubmed/229...

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My husband also has mets to lower spine, ribs and skull. Lymph nodes and vesicles affected. He only has pain after chemo. My husband is 65, I am 44.

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Me too- husband diagnosed Aug 2017 at 49 years old. Mets to spine and lymph nodes. He has done lupron + Docetaxel and now lupron, Prednisone, Zytiga. He takes his zytiga early morning then goes back to bed for an hour our so.

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Yep, I’m here as the question-asker, researcher and techie of the two of us.

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I’m here because of the knowledge, first hand experience, resource of information and this is the place where the rubber meets the road. It equips me to be the best advocate I can be.

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I hear that. It's hard being an advocate in the face of resentful care providers. I'm treated like I'm unintelligent and wasting their time with questions. But I don't care, someone needs to be asking the hard questions as any doc has their bias and they don't know everything.

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So true! My husband's oncologist is an MD/PhD - very smart - but young. When he treats me with annoyance I remind him that he's only been a dr two years longer than I've been dealing with this 24/7 on a daily basis (5 years). It's important to stand up to them and be heard.

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The young one we’ve met with is book smart with 0 wisdom. Joyfully talks about new drugs with major side effects and costs that extend life an average of 4 months ! We switched.

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Yes - ours has only been practicing since 2011. His heart is definitely in the right place but do we trust him completely - absolutely not. My husband has major fatigue from Zytiga + radiation and his recommendation for that is for him to exercise more!!! I wanted to deck him. But my husband is English and super polite and just smiled and said he'd try.

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Yes me too.

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Yes, I am.

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Yes I am. Been through the diagnoses these year. It's been ROUGH. We did all the juicing of fresh veggies during the first round of chemo. Did all the supplements. Even tried oil.

First 5 cycles of Docetaxel did not work. Now we are heading for third cycle of JEVTANA. Side effects have been very different on each one. Now hubby cannot stand the sight of a glass of green veggie juice. The only things he can stand are Sherpher'ds Pie, even though everywhere says to cut out red meat. I do however believe that when he was drinking the veggie juise it has kept his immune up. They keep telling him how strong he is. MO told us 5-8 years survival. Other doctors said much less. Keeping positive

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Carrot apple juice , fresh everyday works wonders. My husband is castrate resistant, 14 years since diagnosis. On eligard and Xtandi, Praise the Lord he is doing great PSA.045 now, in 2014 was 400.

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Wow incredible ! 14 years ! I will try the carrot and apple. He can at least stomach that. Hubby is hormone resistant. You see I keep telling him that survival can be much longer than the doctors say.

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Yes, I’m the researcher, question asker, and record keeper. Bob had RP 2005, then PSA began to rise in 2008, kept under control with Intermittent HT, Mets discovered 2014 in Spine, treated with HT, then when undectable had break from HT, but had Finasteride as maintenance. Mets discovered again in 2017, 8 Lymph Nodes & one in Sternum. Bob now on Lucrin, Casodex & Avodart, PSA been undectable since 4/17. Bob fit, healthy, and tolerates the treatment with only some minor side effects. So always try be hopeful & positive.

Best wishes & kind Regard, Lee

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Yes, I am. My husband diagnosed in March 2018. Difuse mets to spine. He just finished docetaxel in August. He is still dealing with side effects of chemo although getting better each day. Mostly leg/feet pain. His bad days are slowly getting less and good days are becoming more. It has been a tough road. He responded well to chemo. He is on firmagon and xgeva each month.

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My bf also has pain in lower legs and feet after injury 1 round of docetaxel. Did anything help your husband to treat or prevent the pain?

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He takes 600 - 800 mg Ibuprophen and lasix for water retention which seems to help. He also wears a pain patch (fentanyl 12 mcg) not sure the patch is helping though. His leg pain and swelling started after thr 4th round of docetaxel. His last chemo was August 29, 2018. He is doing better as time goes by. I'm sorry you and your bf are going through this. In good health!

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Thank you!

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careful with the ibupofen - my husband may have developed ulcers from taking too much of it. (He refuses to take narcotics) He's seeing a gastro next week.

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I worry about that. But he refuses CBD oil and natcotics. I wish I can wave a magic wand and take it all away!

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Do you massage his legs ?

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If he wants me too.

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I massage legs and feet with Voltaren gel or deep heat. Lots of pain pills.

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Lots of us on here. 18 years dealing with this.

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18 years! I'm happy you have those years to spend wit your beloved! I'm sad you both have travelled this road!

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You bet we are here. Best place other than the group Darryl posted above. I think there are many women here keeping eyes on everything even silently. Great source of info plus some encouragement.

Sheri (wife, caregiver, cheerleader)

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My husband has stage 4 prostate cancer. Diagnosed in 2016 at the age of 45. He has been through everything and nothing seems to be working. He currently is on a clinical trial with Keytruda which seemed promising. But here we are back in hospital for the second time in a month in a half. They still have a couple options after this if this should not work. May I ask if your husbands are currently doing Keytruda and if so how are they doing on it? Thank you in advance.

I pray everyday that they find something that would work and help with his pain.

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Yes- husband was 49 at diagnosis Aug 2017. PSA in 700s meets to spine and lymph nodes. Current PSA is 12.7. Lupron + Docetaxel last fall to winter and now lupron + Prednisone and Zytiga. Also using nutrition to keep him strong. He went vegan immediately at diagnosis. We know it won't cure but is helping him feel like he's doing something- he also has a strong immune system.

Love every bit if info and support on this site. I'm a researcher by nature and degree and appreciate the things published here as well as the discussions.

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I am a wife

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I am one! This site has been extremely helpful to me. I hope I've been able to give back with a bit. There are some amazingly dedicated and intelligent people on this site. I am grateful! 💖

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I’m one! I rely on this group so much. The members have such a positive attitude and a wealth of information.

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Yep. Hubby diagnosed August of 2014. Still dong well.

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Yes I’m the wife of a stage 4 husband.

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Me, too. Hubby diagnosed stage 4 nodes only in 2009 and is currently on cabazitaxel at reduced dose after 1st round dropped ANC from 8,230 to 30 and platelets to 46,000. The latter freaked out the cardiologist. Am wondering how much a drop in PSA should be expected after 3 rounds. So far we have seen <1%.

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I am one. Scary place to be

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yes, after a strange summer of 6 visits to the ER with weird things, including pneumonia that almost became septic, they finally realized he'd been 'in' too many times and finally diagnosed it. By then he'd lost 25 lbs and never really ate anything while hospitalized. Not sure why because his PSA had regularly been rising, the last I think was over 500. So now it's diagnosed as Stage 4 metastatic (skeletal) prostate cancer, prognosis of 12-18 mo., his bone scan 'lit up like a Xmas tree'. He is getting monthly hormone shots which has helped. Weirdly his knife stabbing back pain stopped even before the first shot. He has decided for 'quality of life', does not want chemo as just the hormone shots make him feel weak, cloudy etc. so he is sort of an experiment of one right now.

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Here! Hubby diagnosed at age 44. We found out soon after our third date. I'm still here 6 years later as his life partner. We've had it pretty easy so far (relatively speaking). Cyberknife to the prostate tumors appeared to remove the cancer but then back year later Mets popped up. 6 rounds of chemo, Lupron and Casodex kept his PSA and met growth undetectable for 4 years. He had Provenge in August, and his PSA is still rising as it will on Provenge. Trying to decide if we now pair it with Zytiga or Xtandi or try to knock the Mets back with metronomic chemo. Hanging on to the hope that each new technology might extend his life longer. I'd really like to grow old with this guy.

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Husband diagnosed 11/16. Mets to bones and lungs. PSA 1400. HT for 1 year PSA Rose to 2600 11/17. 6 rounds chemo (didn't work) and 3 radiation treatments in wheelchair. MO took him off casodex now on xtandi for 3 months, lupron and zometa since the start. PSAs 0.754 and he is on the airboats and at hunting camp!

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Also his last alkaline phosphates 53 U/L down from 536 in February.

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Yes, I am a spouse of a prostate cancer patient. My husband was working in the North Tower on 9/11 and it was determined that the exposure gave him an aggressive form of prostate cancer along with a couple of other cancers as well. We are fighting the good fight and grateful for every day.

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Yes my husband was diagnosed July 2017 at 48 years old . Stage 4. Mets from shoulders to pelvis. Psa was 489. Current psa is 1.25. Just today on my FB supper groups two men under 50 just lost their battles and it honestly frightened me. I didn’t share with my husband because I need him to focus on getting well. Lupron does a number on his emotions so I want to guard him as much as I can. Fight on, we continue to fight to defy the odds.

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I do the same guarding business. He’s often a glass is half empty kind of guy.

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My husband has been living with aggressive prostate cancer since 2010. He became metastatic and castrate resistant about 4 years ago. He currently has bone and liver mets. Our next treatment will be carbotaxil and carboplatin combo. Currently he is on BAT and we are hopeful it will help him become sensitive to xtandi again.

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I am the wife of a 54 year old who was diagnosed in June 2018. The cancer was detected when he became paralyzed after many months of back pain. There was a large met on the spine causing nerve compression. He had an emergency operation which went incredibly well, congratulations to the amazing neurosurgeon and his team at RUH, Saskatoon. He was diagnosed with stage 4 prostate cancer with multiple mets on cervical vertebrae, lower back,ribs and scapula, PSA 427. After recovering from surgery, he started Lupron (every 3 months), Casodex (daily), 10 radiation treatments to lower spine and neck and has just finished his 3rd Docetaxel chemotherapy treatment of 6.

This has been an incredibly difficult journey particularly since we were both extremely uneducated as far as how the medical field and healthcare works (we are in Saskatchewan, Canada). There were weeks of unbearable anguish at times, sadness, anger, a sense of futility...I could go on.

We are more used to this now and tend to approach treatment in a more pragmatic manner. He is doing quite well through all the treatments that he has undergone, he is able to walk quite well now and has very little side effects from the chemotherapy, which is a true blessing. PSA is down to 25 at the last test so, it appears that things are going in the right direction.

As far as other complimentary treatments/therapies go, we have switched to a much healthier diet, more veggies and less bleeding steakzillas. He remains as active as possible and continues to participate in our every day life such as putting up firewood for winter.

The most important thing for us is without a doubt to remain optimistic and hopeful.

Take care of yourself.

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Yes, hubby been fighting for 27 years..RP, then radiation, 5 yrs later came back, casodex and Lupron until 2015, discovered Mets in spine, spinal radiation and Zytiga, zometa and prednisone...stopped working after 3 1/2 yrs with psa up to 11 From 1, started on xtandi and zometa two months ago..Never had side effects from any of the drugs (except hot flashes) until xtandi. This is horrible... reduced from 4 to 3 daily a couple of weeks ago...now waiting to see if improvement. 4 tabs a day and he couldn't hardly get out of chair...terrible joint pain. Also he needs knee replacement and Xtandi makes knee more painful. Hopeful reduced meds will help. Will let everyone know!

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Xtandi made me an invalid. Cut to 120 mg/day and improved. Cut to 100mg (two pills one day 3 the next) and have been improving ever since. Too toxic for me to handle.

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Lots of women here......... I'm soooooooooo lucky to be surrounded by such lovely ladies.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/05/2018 4:09 PM EST

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Unfortunately I have become a member of this group like all you women. It is great though to have a place of support.

My husband is 56 and was diagnosed March 2017 with a Gleason score of 9. He first did 6 rounds of docetaxel with prednisone- finished Aug 1 2017. Found out November 2017 that cancer spread. He then when on Zytiga, Xgeva and prednisone for 1.5 months before we figured out it did not with at all and cancer continued to spread. Originally when he was diagnosed he was at stage 4 with bone Mets to his femur , 3 small spots on his ribs, and a couple vertebra. It had now micrometastasis to his lungs, and his scan lights up like a Christmas tree. He was hospitalized for 3.5 weeks Feb 2018 until treatment of cabazitaxel and prednisone. This worked really well until Aug 2018 where he stated having SOB and bone met pain again. Here we are now trying carboplatin and etoposide. Round two as I write this sitting in the hospital during treatment. He was also just released a week ago from the hospital after having pneumonia. They had to delay treatment for a week so he could recover from the pneumonia. His PSA dropped from 598 to 549- not as significant when he was on the other treatments.

This is one difficult journey to walk. No one ever thinks this will happen to them. Very blessed to be surrounded by great people with amazing support.

Praying for all your families and loved ones. Stay strong ladies- they need us.

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Ladies/partners as Daryl the administrator pointed out at top, there is a site just for us ladies/partners to share our daily concerns without clogging the advanced prostate forum here if you’d like to join as well...

healthunlocked.com/prostate...

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Yep, 14.5 years. On Xtandi(3.5years), but shortly will start 2nd round of Docetaxel, just doing the scans etc and then will start. Hugs to you all

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Count me in even though I'd rather be someplace else. I just joined this site a couple months ago when Tall Allan became active here. I participate in other sites as well.

My husband is beginning his 5th year of dealing with PCa. Like many partners, I do a lot of research, tag teaming with my husband who's got plenty dealing with the illness itself. I go to all the visits so we can check each other about what really went down during the visit. Mainly, I try to enrich our lives, since it's harder for my husband to take the initiative in making the kinds of adventuresome plans we used to enjoy. We accept this; we're in a new time of life. I truly feel for the younger men who have advanced prostate cancer. That is a more serious theft of health, well being, and the future. It must be so very tough for younger men and their partners to face the limitations this disease imposes.

Below is my husband's PCa profile. (I wish this site offered this feature of including a signature profile with every posting. I kind of track people who have a similar profile to my husband's.)

So, yes, my guy is Stage 4 with some bone mets. He's on Lupron again since his PSA started to rise a year ago. It seems less of a beast this round, but Zytiga/Predisone will be added shortly after the next visit on November 28 with Dr. Matthew Smith at Mass General.

Husband 70 yrs (74 now)

pacemaker; Agent Orange 6-9/14: blood in urine; DRE suspicious

biopsy 11/14: G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved

11/14: Lupron 33 mos

6/15: 9 wks IMRT

9/15: .14

1/16=.093

4/16=.079

11/16=.05

2/17-5/17=.05

11/17=.08

2/18 .20

4/18 0.98

6/18: 3-4 bone mets

7/18 3.29

8/28 9.0 Lupron re-started

Zytiga planned 12/18

I feel for all of you who are here because this is one tough bear of a disease. I hope to contribute as questions come up that I feel competent to answer. So far, everyone here seems very knowledgeable. I thank you now and in advance for your input.

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I’m one. My husband is a retired research scientist who is keeping up with specific immunotherapy data and little else. So I read as much as I can about diet, ( we are now plant-based, no added oil in cooking) exercise, and follow groups like this. Remarkably, he’s lost 60 lbs, not a diabetic after 23 years of insulin injections, gone off of both BP med and Lipitor. He’s on lupron 8, months and had a prostatectomy (10 months ago). (Stage 4, Gleason 9) So far, no met.

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Dx 2/13/2018 53 yo married 33 yrs no prior symptoms with stage 4, Gleason 9 caught with 1st PSA 384, 1st DRE. Scans confirmed spread through out the lower abdomen with lymph nodes involved.

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YES

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