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Welcome new member Dotson: worried about father, GS 9 (4+5) with Mets.

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Posted 11/20/2013 4:15 AM (GMT 0)

dotson said...
My father has been recently diagnosed. He is 48 always been healthy no medical issues. He started to have severe pain that would start in his lower back and radiate though out his body. He went to the e.r. where they did a ct scan. C.t. scan showed lesions on the spine and the doctor suspected cancer. We got a family physician which ordered a pet scan. Pet scan showed hotspots in the prostate, pelvic lymph nodes, kidneys, colon. Lungs, liver, and pancreas were clear, her exact words were from the neck down in the skeletal system. She said it was one of the severest cases she had seen involving the bones. We went to an Urologist who performed a prostate exam then ordered a biopsy. His Gleason score was 4 + 5=9 Our oncologist is starting chemo to attack the lymph nodes, then hormone therapy later. Our Urologist is very encouraging , that we could have years. Our oncologist is straight forward telling us it is advance and non curable. My question is will this treatment help his pain? Have any of you had similar treatment and what was the outcome? Why does it feel like a roller coaster? One doctor up beat, encouraging, the other mellow toned but vey precise. We will see our oncologist Thursday to discuss when we will start treatment. His p.s.a level was 676. We feel like we are in a fog. This forum has been much comfort to me. I read your stories and feel like I know each of you. I'm so glad I ran into this researching. When will he start to see some relief in pain? 15 mg time released morphine twice a day and 15 mg morphine 1 to 2 as needed every 4 to 6 hours and it still sometimes doesn't knock it, I read its called break though pain. Any advice would be greatly appreciated.


age 48
Gleason 4+5=9
p.s.a. 676
bone mets in skeletal system
lymph nodes in pelvic
Getting ready to begin treatment

Posted 11/20/2013 4:17 AM (GMT 0)
Dotson,

Welcome to the forum. So sorry you find yourself here. I know it sucks. But glad you found us. Hope we can help.

We have guys who were younger and sicker when they were diagnosed than your dad is and some of them are doing surprisingly well. Yes, the treatments you described will help with his pain. Not sure about the chemo but hormones usually start to help with that after a few weeks.

We have lots of guys here who have been where your dad is now who can help you understand what is going on and what to expect.
Posted 11/20/2013 4:28 AM (GMT 0)
Dotson, first of all, welcome and so sorry your family has to deal with this. I'm assuming you're in your 20s.

Your dad has no doubt been dealt a severe hand but there are guys on this board who are doing very well with similar stats. A cure may not be possible but years and years surely can.

I can talk to you about pain management, my mother is nearing the end of her battle with stage 4 lung cancer with mets to sacrum and legs. We discovered her cancer because of her pain. It's very hard to watch a loved one cry from pain. We managed to help the pain for a while with radiation, surgery to implant a screw in her femur to mitigate fractures, a lot of morphine, anti anxiety meds, a bone strengthening med and chemo. All this helped for 2-3 months until she started getting more lesions in her other leg so now she's doing radiation again and they upped her morphine. prognosis for lung cancer is a lot worse so I don't want to scare you, what i'm trying to say is that there are alot of strategies to help minimize pain. They do come at a cost sometimes, like fatigue, drowsiness etc. but anything that works against pain is welcome. Pain is the worst part of the experience for my mother. She's not even scared of dying, she's scared of pain. So there is a lot you can do. The other thing you got going for you is that you're in America. Your dad's docs won't let him be in pain. There is great pain management in America. Not saying there won't be discomfort from time to time, but they won't let him be in pain.

don't know what else to say to you, it's tough. Wish you and your dad well.
Posted 11/20/2013 9:16 AM (GMT 0)
dotson,

I'm sorry your father's in so much pain. I know that's hard to watch, having been through it twice myself. I know that for my mother, it was the hip fracture and the loss of ability to walk that really depressed her.

The radiation to the bone mets should supply some immediate relief - so will the hormone therapy. Xgeva may help prevent fractures, and may also help prevent new bone mets. I don't know if he will be able to get Xofigo for the bone mets because it requires evidence of castration-resistance, which he hasn't yet gotten to.

There is some recent evidence that new metastases are spawned from the primary prostate tumor and that irradiation of the prostate even now can slow disease progression. This is experimental and not the standard of care. I highly recommend pursuing such clinical trials with the goal of lengthening survival and/or reducing pain - with prostate cancer, those often go hand-in-hand.

Morphine is infinitely titratable, but for the breakthrough pain Fentora may be needed at times. Unfortunately, bone pain often doesn't respond to opiates as well as some other kinds of pain do, so it is important to work with a pain management specialist in finding the right combination. Some find adding Celebrex to be helpful.

Keep in touch.

- Allen
Posted 11/20/2013 10:23 AM (GMT 0)
Dotson, so sorry to hear the news of you father and extend my best wishes you way for your entire family. Pain management takes time to determine what is the therapeutic level that one needs and with cancer contenting to metastasize it will make it some what more of a challenge. I have a severe injury to my lower back with no cartlidge in my facet joints in my lumbar region, two vertebras that are fused at L4-5 and L5-S1 and the two levels above are bulging and will need something done in the future. Hopefully your doc will get you to a pain management clinic and can get a good start on a program. It may take a few months to ramp up to the level that solves the problem but maybe it is too strong with side effects. Anyhow, there are great doctors that are experts in this field and they will be able to make your father comfortable.

Sounds like your Dad is very lucky to have you by his side and researching items that will improve his quality of life. They can do so much today for him. I am a G9 and have been for four years and I hope and really think a have a number of good years to live.
Posted 11/20/2013 1:19 PM (GMT 0)
Thank You so much. All of you are a blessing! I just wished this was a different forum and not Prostate Cancer for any of us. She hasn't discuss pain management and the morphine right now keeps him so sick. He has no insurance so we got a crappy nausea meds instead of Zofran which I read really helps. He's filling for his social security this week to get insurance. What hurts the most is seeing this healthy man who in my eyes could do anything. Always worked and took care of us be so sick and there is nothing I can do. I always keep him upbeat and tell him things I read, I constantly read, constantly call cancer centers anything to get more info. He has hope but is so disheartened as I would be too. I want to go to every appointment and do. What can I do to help him more? I feel so helpless! At the cancer center I seen a man who had such a despair look on his face and I could tell he was in pain. He was alone. When they called us up I walked by him and just reached and touched his arm. I didn't know him ,but I don't know I just wanted to let him know someone cares. I have faith theses treatments will help and I truly believe he can go into remission and be with us for a long time. Right now the pain is so bad he thinks the cancer is getting worse and isn't where I am. He's embarrassed by the pain.How do I help him with this? Oh and now he is saying I don't have to go to appointments because he feels like he is interrupting our life, I have two daughters very active in school, sports is the only reason I can think why he would say this. I told him you are my life!! You and my girls, husband are my life!!!I will never leave your side. You will never go through anything alone. My father is my best friend, protector and so much more. I would never tell him but this disease is all I can think about, getting rid of the cancer, healing the mets and the lymph nodes. Is it normal that he seems to be feeling like a burden? and he has told me this. I just want to spend all the time I can with him! I keep telling him after we go to the hormone shot things should get much better and its a shot every 6 months the urologist recommended. I know men hold their emotions different than women. I stay positive and tell him about clinical trials, told him some of the stories I've read on here, meds that are very promising. After he heard stage 4 likely un curable his whole attitude changed. Am I doing something wrong? I think after we control his pain he will be more positive. He is going to fight this. Any supportive tips for him to get him through this just finding out stage and being hit with everything at once.
Posted 11/20/2013 1:33 PM (GMT 0)
Davidg Thank you and Thank you Peter, tall Allen, and Devastated as I said before all of you are a blessing. I am 35. My father is actually my step father. My biological father never was a part of my life. My dad came into my life when I was 6 he was young. I'm an only child, he and my mother never had children. He raised me as his own and my daughters thinks he is my biological dad. He is the only grandfather they have and know. Although we don't share the same d.n.a. or eye color I couldn't love him more :) My daughters are 12 and 7 just turned. My youngest knows he's in pain and asked if he was sick. I told her, he wasn't feeling well but we were going to get him better. She is as bad as me wanting him with us all the time. He does stay the weekends with us and sees us every day after work, but now he's leaving work it just isn't durable and the cost of treatment is so expensive, that is very hard for him. He loves to work.

Post Edited (dotson) : 11/20/2013 6:45:55 AM (GMT-7)

Posted 11/20/2013 3:04 PM (GMT 0)
Dotson,

What general part of the country are you in? You mentioned Social Security so you're probably in the US. Sometimes when we know what city someone lives in we can suggest local resources.

You mentioned a husband, so I can stop tap-dancing around pronouns when I talk about you. When people talk about their fathers it is hard to sort out whether we are talking to a son or a daughter.

Once your father starts his treatments and starts to see some improvements in his symptoms and his numbers he will probably be less anxious. For a man to receive the sort of news he has gotten is a bit like being run over by a steamroller in a Road Runner cartoon. But after a while the man will pull himself up off the pavement, all flat and wobbly at first, and get on with his life.

His oncologist is right. His disease is not curable with currently available technology. But it is probably manageable for a long, long time.
Posted 11/20/2013 4:54 PM (GMT 0)
A friend emailed me a copy of a blog posting by a well-known prostate cancer doctor. It's a pretty good review of the treatments for advanced prostate cancer with some information about the order in which they should be used. Might be helpful for you.

Here 'tis: prostatesnatchers.blogspot.com/2013/11/the-royal-shade-of-blue.html
Posted 11/20/2013 5:15 PM (GMT 0)
We live in Eastern Kentucky, treatment will be given at Pikeville Center Hospital, Lenard Lawson Cancer Center in Pikeville. Thank You for the copy of treatments. Some find it strange that chemo is being started first before the hormone, Our urologist said she is doing aggressive treatment right off the bat maybe due to his age being so young. I've read in some cases after the first chemo treatment you can feel relief in pain. We go tomorrow for our official treatment plan as we had to wait for the biopsy reports. I will ask that, usually chemo is given if the hormone quits working. So many questions to ask, I keep them all written down. Our oncologist wasn't suppose to see us with out a biopsy, she made an exception for us. I look at it as a good thing, she is on top of it, I called that center enough times asking questions too. My dad is just afraid that every extra step they take is it because his case is so bad. I tell him no it is because they are on it.
Posted 11/20/2013 5:23 PM (GMT 0)
Dotson, welcome. I am not a g9 but I was diagnosed young as well. I had extensive mets and a psa of 3200+. Worry is justified however hope is reality. Two weeks from today I will celebrate my 50th birthday aand 90 months since diagnosis. There is hope. I invite you and your father to read my blog. Todd
Posted 11/20/2013 5:44 PM (GMT 0)
Dotson:

You are wonderful. I do think HT can help tremendously. I am on HT and it has knocked my PSA from 17.55 to 0.02. From what I've read, it is possible that the mets will shrink tremendously. If it does, I imagine the pain will decrease also.

Mel

Posted 11/20/2013 7:56 PM (GMT 0)

Hello Dotson:

Reading your story, my heart goes out to you and will be praying for your father, you and your family. I respect you for your heart, soul and involvement with your father. My wife still works (we need the insurance) and we have one daughter that lives 30 minutes away and has four kids and runs a business out of her home. I go to all my appointments and treatment (unless I need a driver) alone (I have no problem doing that). You've come to the right place for encouragement and help.

I'm somewhat new here (although I've been reading HW several months before I registered). As you can see by my signature, I too started this journey with a PSA of 128, G9, and mets from my right skull to my toes. I didn't even know what a "PSA" was until last Sept. 10th!!! Just keep asking questions and learn all you can about prostate cancer.

Here at HW, there are MANY people that has been down the same road that your father is and will be traveling.

Trust me, I can testify, you all will have good days and some bad days, but at the end of the day, we'll be victorious and tomorrow will be a new day! The first couple months, I think I could have filled an Olympic Swimming Pool with all the tears I've shed!! (and at times, I still do)!


Just to let you know, you all will be in my prayers.

Dave in Bartlett, TN
Posted 11/20/2013 8:26 PM (GMT 0)
Dotson, sorry we had to meet you on this thread, but glad you found us. I know your pain and anxiety from my mom's lung cancer years ago and seeing her pain mostly from the bone mets like davidg said. tallAllen, Todd, one of the moderators Peter and some others will give you first hand experience as well as clinical links to research about PC, and check in with the caregivers thread too.

My husband was diagnosed almost 19 years ago at 48 , like your dad. However, as you know your dad's PC is very aggressive. You seem to have good doctors behind you to help with the battle. Early in my husband's progression, one oncologist said his goal would be to do any treatment available to stay alive as long as possible because there will be a cure. He is still fighting. Every time he failed a course of treatment, something new has come out of the pipeline. Like you said, the pain seems to be the main hurdle now for your dad and controlling the pain will make him feel better overall. There are a few newer drugs available like zytiga, xtandi, xofigo that may help along with some old standards like hormone therapy and radiation.

Try to tag into what your docs are saying, not if they have good bedside manners. You want them to give you the whole story in language you can understand and to be there when you have questions or are ready to run to the ER because of unusual side effects. Someone on another thread suggested recording the conversations with the docs, not just taking notes. I started taking taking my tablet with us (downloaded app that records and gives place for notes) and now can have instant replay of what doc really said, not what we thought was said.

This is a fantastic site and the members offer what they can to make your journey easier. PC and its journey is different for everyone. The common ground here is the hope and fighting spirit you hear in almost every thread.

Praying that the next few days will bring less pain and a treatment plan to stabilize your dad's PC.

Pat
Posted 11/20/2013 11:47 PM (GMT 0)
Dotson, you're acting as a patient advocate for your father, and he is blessed to have you.  You can face things he can't, ask questions he won't, reach out to people he wouldn't, and provide obviously loving support he really needs.  It's a battle, for sure.

It's a difficult road, and both of you may often find it all you can do just to keep breathing.  It will become more "normal' after a while, and perhaps more tolerable.  Pain management is really important, and our own Purgatory knows more about that than just about anybody.

No specific advice, but for what it's worth I'm lifting you both up.  All the best for you as you work through this, and if I may suggest, stay with this forum to ask, vent, complain, whatever.  Many here stay with this forum specifically to try to help people just like you and your father.

Keep fighting, cancer warriors!

Posted 11/21/2013 12:17 AM (GMT 0)
Welcome Dotson, I'm a G9'r, with bone mets (hip, spine ribs), pelvic lymph nodes, and had a starting PSA of 101. It was a severe hip pain, and my wife, that eventually got me to go to the doctor. I was fortunate in that after about a month on HT (Lupron and Casodex), my hip pain went away.

Lot to try and absorb here, but not sure I've seen this mentioned yet.... when the doc suggests starting HT, it is important to avoid a "flare" effect, especially for someone with bone mets. I was given Casodex (bicalutamide 50mg) for 10 days prior to the 1st shot of Lupron to help minimize a flare up of testosterone, immediately after getting the Lupron. When I went for a 2nd opinion at Sloan-Kettering, the oncologist said she would have started me on Firmagon (Degarelix), rather than Lupron, as it does not cause this flare up, and I believe drives the PSA down faster.

Your father is very blessed to have you in his life, and by his side in this battle.

You and your family will be in my prayers,
Posted 11/21/2013 1:49 AM (GMT 0)
We have only seen the oncologist once, she mentioned zometa then asked if he had insurance, after she seen we had no insurance it was dropped. I had the drug written down before the appointment along with my list. I called the manufactory today of the drug and got 90 day supply free!!!! I felt like I had won the lottery!! I called the drs. office excited to tell her to check her fax, as she has to feel a form out with diagnose and prescription. Her nurse said she's not sure if she is going to use this drug. ????? I've read wonderful things about the drug. The drug was mentioned in the link Peter written earlier, I called the Cancer center of America and Cancer.gov and they both said zometa should definitely be prescribed for the bone mets. The oncologist said she would discuss treatment with us tomorrow. Did I annoy her? Will she prescribe this? Money isn't the issue now the manufacture is giving us 90 day supply through a patient help program. This medication is really expensive and I was thrilled to get it. I get so confused. I am going to listen quietly to the treatment plan as she already said she is starting with chemo, I hope she mentions zometa if not I am going to ask her to prescribe it. I realize to her he is a patient, to me he is everything and I want him well. What are your thoughts on zometa? Anyone prescribed it? Did it help? Anyone with bone mets not have had it? I'm lost and aggregated.
Posted 11/21/2013 1:58 AM (GMT 0)
my mother is on zometa. it is indeed advisable for patients with bone mets but it does has some side effects and requirements. First off, you'll need to get dad dental tests and probably dental work, I'm sure your doc wants to discuss this with you. Doc also probably wants to tell you what some of the other potential side effects are. In all honesty between radiation, chemo and zometa, my mother likes the last one the least. She wanted to quit it until I convinced her of what a serious fracture might entail at this stage. In all probability you hit the jackpot with the manufacturers generosity, but you just have to clear this other stuff first.
Posted 11/21/2013 2:11 AM (GMT 0)
I wanted to add I'm not downing our doctor, as she is starting with an aggressive attack on the cancer which is what we want. I just want everything we can get. Thank You to all of you for your advice, info I didn't know, tips on doctors visits. It feels amazing to vent with others who understand. I will pray for each and every one of you. My heart goes out to all of you. Know that all of you have given us such hope, hope for time, for good treatments, for light in a storm. Thank You!
Posted 11/21/2013 2:19 AM (GMT 0)
David I really hadn't thought of that. His Dental is good, regular check ups every 6 months till recently. I hadn't thought of her wanting to discuss side effects I have read up on them. I guess I'm like a race horse right at the start . Perhaps I was so excited I was expecting a different response. Why didn't your mom like the zometa if you don't mind me asking.
Posted 11/21/2013 2:33 AM (GMT 0)
my mother thought the Zometa gave her additional aches and pains (growing pains) and she thought the hiccups from the chemo were from the zometa.

Great that your dad's dental work in order. Your doc will probably require a visit to reconfirm this prior to starting zometa, that's my guess.

I know what's it's like to be frazzled and rush through things. I'm lucky because my sister has taken care of the majority of the medical stuff. Your dad is going to be okay once he adapts to a new routine and possibly lifestyle.

Have you also looked into dietary changes to help promote healthier living? It all adds up.

David
Posted 11/21/2013 2:44 AM (GMT 0)
I looked at cancer fighting foods such as garlic, oregano, flax seed, green tea, more of a fiber diet. We haven't started any yet, I was going to ask before we did .Right now he doesn't eat much, he stays nauseated. I am so sorry about your mother my heart goes out to you.
Posted 11/21/2013 2:54 AM (GMT 0)
thanks, it is what it is. Lung cancer among women, and specifically non smoking women is up like 20%, Hard to explain.

There are some guys on this board who are really hardcore about eating specific foods/diets that help (all around).

If you start a thread on it I'm sure they will chime in and simplify the search for you.
Posted 11/21/2013 4:41 AM (GMT 0)
Welcome to HW. Sorry you need to be here.

Don't really have anything to add but to say that your father is very lucky to have someone like you watching out for him. Often times that makes all the difference in the world.

Keep fighting for him.
Andrew
Posted 11/21/2013 5:29 AM (GMT 0)
dotson,

Perhaps, since he qualified for the free medication, she would prefer to prescribe Xgeva over Zometa. Xgeva costs a lot more, and only works about 20% better, but there is evidence it may prevent bone mets. Either would be great if the SEs are tolerable.

He may qualify for this and other of the very expensive drugs prescribed for men in his condition, through the Safety Net Foundation:
www.safetynetfoundation.com/index.jsp

I found it helpful to ask to speak to the social worker at the hospital where he is being treated. They can help with the applications for state disability, social security disability, medicare, SSI, medicaid or any other program he may be eligible for.

- Allen
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