Daddys journey

[Daddysgirl7378]

My name is Paula. My dad is 68 and diagnosed with stage 4, PSA 216, gleason 9, bone and lymph node involvement. He is on lupron, and doing bone infusions, 3rd round of chemo on Thursday. I am devastated. Good days and bad days. Seeing him so sick from chemo and lupron is heartbreaking. Looking for real life stories to lift my hopes and to with others who can relate. Thank you

[Heidabelle]

Sending you lots of hugs & positive thoughts. Stay strong! 💕

[gusgold]

Once he gets off chemo, Lupron is not that bad

[RyderLake2]

Hello Paula,

I was diagnosed with metastatic prostate cancer over five years ago (May 30, 2013) at age 67 with a PSA just under 1700 (not a typo). I am still here. My advice to you is to 1) Stay positive. 2) Get an oncologist who you trust, who you can talk to, and who has a good understanding of the new drugs coming out. 3) Start reading about PCa so when options are presented to you and your Dad you (and he) are informed. 4) Every time you see a doctor take notes. 5) This web site is a fountain of information. You will learn a lot and you are not alone. 6) Attend a PCa conference.

[Tonyland]

I'm going thru it as well with my dad. Every emotion imaginable.

This board is very uplifting and has kept me going many days when I had almost given up.

[softwaremom00]

The chemo is tough but with a good Medical Oncologist and good family support you can help him get through it. I think you might like the book "Beating Cancer with Nutrition" by Patrick Quillin. It is an older book.. and it is basically about integrative medicine. It talks about how adding a healthy diet can help while using traditional medicine.

I made my husband a lot of soups to help him get through chemo. Something about soup is comforting and you can throw in a lot of vegetables and make it healthy. (Even in the summer) It is important to get him to eat. If you are in North America we have a lot of great fresh fruit in the supermarket these days.. really yummy cantaloupe. If he is having intestinal problems. .consider a good probiotic( I like sanjevani.net but there are many) … if he will drink kombucha .. My guys love the BU Kombucha.. it is a good source of probiotic and delicious.(Sprouts sells it) My husband also used ginseng a lot during his chemo … to help with fatigue.

Spend time with him watching funny movies and TV shows. Re-runs of Frasier on Hulu might make him smile. Laughter is good medicine.

I think adding meditation to your routine is helpful to anyone. I dragged my husband to meditation classes and it might have helped me more than him. Most big cities have Mindfulness Meditation classes... or there are some online.

lots of hugs and prayers for you and your dad.

Softwaremom

[Hidden]

It's normal human reaction when a loved one is not feeling so well to be devastated. When he finishes his chemo he will be back to doing handstands. It's called the healing hands of time. You both have to put the time in. Many of us here started in what we originally thought was a "24 months remaining" type mindset. My original diagnoses was a lot worse than your dear fathers is. I'm in my 4th year and still have a pocket full of drugs that I haven't yet begun. This site is full of men who are at 10 years and counting after having an original stage 4 diagnoses.

When I see my daughter these days, (she is 34) I can see the love in her eyes, something I never noticed before my diagnoses. No words need to be spoken. I wouldn't trade that look for a cure, it touches my soul. Give that to your father and let an oncologist who specializes in prostate cancer help guide his treatment choices. It's a long journey, buckle up, your lives are different, adjust.

Turn the page, a new chapter awaits.

[Dayatatime]

Would be hard pressed to put it in better words than Bill48162.

I have a teenage daughter and my other 2 girls in their early 20's. I told them they were going to be my sword and shield through this and funny enough they argued over which one was going to be what. They are very competitive. lol It's actually a precious memory and brings a smile every time I think of it.

Chemo towards the middle and end can be rough. The Neulasta shot given afterwards is no picnic either. Your dad will bounce back and be his cheery self again. Cancer is a devastating blow and it's treatment and effects are overwhelming. It is equally as hard on the ones closest to us. Hang tough with him because a lot of his strength will be from you and your family. My girls gave me the will to find a way and overcome what others told me was impossible. God bless you for being there for him.

"You never know how strong you are until being strong is the only choice you have"

Ron

[ctarleton]

I was diagnosed at age 65 with 20+ bone mets and numerous involved lymph nodes and a PSA of 5,006. That was 4 1/2 years ago, before they started giving early chemo along with the Lupron because of the clinical trial results showing greater Overall Survival than just using Lupron alone. I've also had one of the bone agents right from the start. Those treatments alone "toned down" my disease by at least 50% on scans, and took my PSA back down to as low as 1.0. After a couple of years, my PSA started back up, and I did Provenge and then added Xtandi 1 1/2 years ago, which brought my PSA back down again from 95 to 1.2. Current PSA is 1.8, and life is pretty good, all things considered. Next month I'll be 70 and this November I will be a 5 year survivor. I have two daughters in their 40s, and their love and support is wonderful to know and feel. We do a lot more "intentional" communicating and visiting now than we did before. It's nice. The Hugs have medicinal qualities, too, I think.

Charles

[Noel91]

Hello daddysgirl7378 the beginnings are devastated and hard to understand.I am 27 and father is 60 was dx with metastasic prostate cancer to 2 bones in pelvis and 2 nodes

On the other side, I do see my father in another way and I enjoy each moment I spend with him and every hug as it was the last one.

I cannot imagine my life without him but we have the opportunity to stay with them and enjoy all the moments.Not always everyone have that chance so we have to thank for every day we have.

Prostate Cancer treatments are improving every day so we still have a chance to fight for life and here you will fine a lot of incredible stories of fighting.Brave people that have already live with advanced prostate cancer for more than 10 years and keep doing well.

This forum helped me a lot with information as we do not have so many information resources in Spain so everything you need you can always ask here, you will find loads of suportive help.

Good luck and stay strong!

[dockam]

Hey Daddysgirl,

This is a wonderful forum to get info, vent, and get support. As far as a good story - read my last post about my Med Onc keeping me around to see my baby girl graduate law school.

I'm Stage IV GL 7(4+3) PSA at 840 with Mets to L ureter lymph nodes.

I had 15 chemos and 30 months ADT(Lupron/Casodex) and got to a nadir of 0.1

I've taken my cancer and made a new mission: get men screened.

blog.athlinks.com/2017/05/1...

My best to you and your Dad - please keep us updated. If you want I can email or even speak to your Dad on the phone - if so msg me.

Mahalo and Fight on

Randy

[DaughterOnAMission in reply to dockam]

How does a MO decide how many chemos to give? My dad is newly dx, Gl9, 17psa, lumbar Mets, possible LN. We have been offered Lupron + taotere, or Zytiga. Not sure what to choose but they (kaiser) said 6 infusions 3 weeks apart. How do they decide how many?

[dockam in reply to DaughterOnAMission]

My MO was really good about allowing me to exceed the normal 6 chemos. He had spoken at his tumor board about how I tolerated the chemos but was still in the teens after 5 sessions. No one would agree to more Taxotere, but he said that he would continue the chemos until the PSA plateaued or I said to stop.

Kaiser is more likely to follow what the research has shown - 6 sessions. The best way would be to hit the cancer with all of the arsenal - Lupron/Zytiga to lower testosterone (T), and Taxotere to kill it off. Casodex may also be offered to prevent T from attaching onto the Androgen Receptor(AR) on the cancer.

Many here also take Avodart - it prevents T conversion to DHT (which is what may feed the cancer)and Metformin - a diabetes drug that has anti cancer activity.

[DaughterOnAMission in reply to dockam]

That sounds like what my dad will do. Zytiga after chemo then? What were the side effects of chemo? I hear that people get sick and have good and bad days but I'm not sure what that means. He's very active, so I think he can handle it but I'm not sure what it will be like for a working 72 year old...

[dockam in reply to DaughterOnAMission]

I did pretty well with the chemos - lost a bunch of hair - no hair don't care. I feel that I avoided a lot of the side effects by fasting 2 days prior to each session.

oncnursingnews.com/publicat...

scientificamerican.com/arti...

tcr.amegroups.com/article/v...

But as the ads state "individual results may vary" So, do some research and present ideas to your Dad.

webmd.com/cancer/chemo-chec...

Please give my regards to you Dad and also keep us updated

Fight On - Randy

[leo2634]

Hi Daddysgirl, I'm also somewhat the same situation with stage 4 Gleason8 and 9 across the board and bone Mets, lymph nodes involved. My two Daughters are married with family of their own but still compete for my affection which warms my heart so your not alone in your quest for information. Me first line of treatments was Hormone therapy I take.Zytiga,Prednisone,Eligard which is six month Lupron injection, Xgeva injection once a month for bone Mets. My PSA was14.7 and now 0.1 almost undetectable in just one month. I feel better than I have in years Ask questions be ,comfortable with your Doctor,and stay positive cancer hates that. You have joined a great forum here with a wealth of information encourage your Dad to join in to this Brotherhood. Hugs and Prayers. Leo

[Litlerny]

Hi Daddysgirl,

Very sorry to hear about your dad’s diagnosis, and his chemo sickness issues. Unfortunately, the chemo wreaks havoc on you no matter how strong you are. The good news is that Those nasty side effects are temporary. I’m guessing they are not giving him bicalutamide (an androgen receptor blocker) as part of his treatment regimen because he is on chemo (?), but that is usually part of the first line treatment protocol for metastatic PCa.

Like your dad, I’m 68. And like ctarleton, I was diagnosed stage 4, oligometastatic (in 06/2015) before early chemo was FDA approved for hormone sensitive oligometastatic guys. But, I recently completed a 6 cycle at 3 week intervals course of chemo with docetaxel. It was no cake walk, but the side effects were at least fairly predictable, so I knew when to expect my slide into the week or so of feeling really crappy. Also, expect (and my MO warned me of this in advance) the side effects to be cumulative, so #5 and #6 will likely be the worst and last the longest. I think it helps, in terms of coping with them, to be able to be able to anticipate them. There are a lot of OTC and Rx drugs available to ameliorate the side effects. The bright side of chemo is that it’s not ongoing. Once you are done, you are done. Also, on his good days, your dad should try to do any activity he enjoys and can tolerate. For me that was/is golf. I could usually golf for a day or two after each chemo infusion, and for a about a week or so before the next one. It helped me feel more “normal.” I’m now 3 months out of my final cycle of docetaxel, and still have a few residual side effects, but all in all not so bad, and every day is a blessing. Since my journey began, and through the roller coaster of chemo, my wife, Paulette, has been my angel, my caretaker, my cheerleader, and my strength in the few times I allow myself to get down and start a pity party. She calls it tough love. I call it the “b***h slap of happiness. 😎. Having a strong faith in God and wonderful support from my family, friends, church, and the members of this group also helps...a lot!

The good news...Your dad will get through this with flying colors. In a short time he will be back on his feet, feeling much better, and adapting to his new reality of living (hopefully for many, many more years) with metastatic PCa. There are a lot of success stories in here of men who are living with a fairly good quality of life for 10, 12, and more years, so take heart. There is a rainbow after the downpour. You just have to look in the right direction.

Mark

[DaughterOnAMission in reply to Litlerny]

My dad was offered the same treatment... How does a MO decide how many chemos to give? My dad is newly dx, Gl9, 17psa, lumbar Mets, possible LN. We have been offered Lupron + taotere, or Lupron + Zytiga. Not sure what to choose but they (kaiser) said 6 infusions 3 weeks apart. How do they decide how many? And how do we decide between the options? He thinks getting it over with would be better. He's a healthy active 72 year old. What were your chemo side effects?

[Litlerny in reply to DaughterOnAMission]

I’m not sure how they decided on doing 6 cycles of docetaxel at 3 week intervals. I’m just guessing that may have been the result of the Stampede Clinical Trial, as the optimum dosage for efficacy with minimal side effects.

I didn’t really have the Zytiga option because insurance wouldn’t cover it right now since I only have one bone tumor and no visceral tumors (i.e. I don’t meet the FDA definition of “ high risk.” So, I chose the chemo because of the insurance issues with Zytiga, and because it was 6 cycles and done. Zytiga + prednisone is an ongoing treatment with its own set of side effects. So...I’m saving the Zytiga for later.

I had most of the side effects they list for docetaxel...fatigue and malaise, low hemoglobin counts, alternating constipation and diarrhea, alopecia (lost a lot of, but not all, hair starting with #2), brittle nails (both fingers and toes), extreme dry mouth, and after #4-#6 neuropathy in my fingertips and toes. However, my white blood cell counts stayed in the normal range and I never had any vomiting or much nausea. I was able to play 18 holes of golf and do most of my other usual daily activities except for about 7-9 days of “crappiness” after each chemo infusion, starting with day 3 or 4.

Most of the side effects can be reduced with OTC drugs or Rx meds from your oncologist. E.g. Biotene helped a lot with the dry mouth, Senokot S Dual Action for constipation, Imodium for diarrhea, Aleve for general malaise, and Ondansetron (Rx) for nausea. I’m now 3 months past my 6th and final cycle of docetaxel. Thankfully, of the side effects are long gone, and I feel pretty darn good. I still have a little mild residual neuropathy in my right thumb and a couple of toes, and my hair is just now starting to grow back.

God is great and life is good! Best wishes to your dad with success in his treatments.

[Cynthgob]

Once you are through the chemo he will feel remarkably better. A good probiotic seemed to help and exercise. There is a clinical trial on the benefits of exercise in dealing with prostate cancer. Encourage exercise if he’s able. My husband loves the beach and we took long walks. He’s now back to the gym after finishing chemo in Feb. We have 3 children and they seem to appreciate their dad more which has been the good side of this terrible diagnosis . Be sure to have a prostate oncologist that you trust. We are in a clinical trial.

[poofers]

I was dx with stage 4 psa 209 almost 4 years ago. Reached undetectable psa <0.02 over 3 years ago and still remain that way. Currently on Degalerix and Casodex.

Not to worry, your dad has many many more years ahead of him with new PC drugs forthcoming.

[Beermaker]

Daddysgirl, I am very sorry to read of your father's diagnosis. But cheer up! I was diagnosed in 2011 with Gleason 8. The RP that I had in Jan 2012 showed I was Stage 4A. Things looked grim. I started on ADT almost immediately. It took me down to <0.1. Some ups and downs along the way since then, but still at <0.1 so normal scans show nothing, even though scans when I was on "ADT Vacation" showed mets in my PSA bed. The point here is that my wife goes nuts about 4 days before every consult, which means 4 times a year. She is VERY moody, and hard to live with. It is hard on me. So please, find a way to support your husband through thick and thin. It is important to him and his overall health. Find a support group locally if you can. Follow this one. Give daily encouragement. Give frequent soft hugs. Frequent affirmations of love. Frequent treats if you can. This disease is often harder on caregivers than on the patients. Hang in there. You can beat the beast!

~ Marshall

[ann1919]

Hi. I understand how you feel. I’ve been on this journey with my Dad since 1996. Stage 4, lymph node involvement. Treated with Lupron, Casodex and radiation. Now he has bone mets in multiple areas. He’s 89 years old and is going on his 5th round of Taxotere, and is doing well presently.

Hang in there. Sending hugs and prayers for you and your Dad.

[Caring7]

Great responses here.

Also note -- the chemo is an investment. There is a response that you will see immediately, but the real reason that they have started to prescribe chemo very early in treatment of advanced prostate cancer is because clinical trials (STAMPEDE and CHAARTED) showed that early chemo intervention made a big difference with overall survival (big picture). As I understand, the trials were based on 6 cycles, which is why it is 6 usually.

Several of the newer treatments are "investments." With Provenge immunotherapy and RA223/Xofigo treatment, there are not any directly visible responses (PSA, etc.) but here too clinical trials showed that they work in a great/overwhelming majority of patients compared to patients who did not get these therapies. It's tough to go through a hard treatment and not see immediate response.

My husband had a pretty bad outlook 4 years ago -- diagnosed at stage 4 with distant bone mets. in the first 2 years we threw everything at it. He is still kicking -- literally: bike riding, working, occasionally more tired/fatigued than he would be otherwise. And, although he is on his last available standard of care treatment -- abiraterone/Zytiga (after being on enzalutamide/Xtandi) -- he actually has a lowering PSA and a regression of lymph nodes on his latest scans. So -- we believe that all of that stuff / investment DID pay off.

Best wishes as you weather this chemo storm, but as so many have said here -- it really should be a temporary state.