Hep C Discussion Forum

Fireman Rob · Senior Member

RE: I guess it was to good to be true.

Groupergetter · Guru

Duane,

Please know your presence and spirit is with all who post here. You have personified the meaning of courage, strength, perseverance, patience, compassion, hope, and kindness. When I was feeling down after relapsing on the Sovaldi/Olysio you started a thread in support of me. For this I am truly thankful.

There is not a time I visit this forum I don't think about you, your health issues, and say a prayer. I/m confident there are many others who do the same. Wish you were closer, would be honored to meet you and your family. I know you have much going on in your life. Please keep us posted, people here care about you.

Dzdayscomin · Senior Member

BTW .....I forgot to mention, with things spinning like crazy here that my Hep C test came in and it was neg. So although it doesn't change anything....... for others that did the S/O combo it's sure good news, that's like 16-18 months EOT, and then throw in all my other problems liver related and still the HEP C did not return.

Looks like ya kill it one time and forever with these drugs.

Duane

MzmiffY · Veteran Member

Hi duane,

You are your harshest critic and everybody cares for you not because you are self serving and indulgent, in fact we know the absolute opposite to be true. You are kind, thoughtful and incredibly humble. We feel deeply because it saddens us that such a remarkable person is dealing with what many of us feared may be our own future. You have been welcoming and obliging since I have joined, give yourself permission to lean on us as you need it. It is more than generous that you have shared your journey so far and we hope you will continue. People don't forget kindness and compassion and that is why so many here want to return what you have thoughtfully given.

Hope there is something wonderful in your day today

x

Dzdayscomin · Senior Member

My guilt lies in the fact I tell my story, but have difficulty in being as compassionate to others plights, even though they take the time to encourage me.

I rarely post much to other threads because i have so much on my plate there is little room for others issues and problems on it, this is where others are so much stronger and faithful than I....in other words I take a lot, but give only a little....this is a true fault in my faith that needs work, many of you impress me deeply with this quality.

Peace

Ro · Senior Member

Duane,

Your strength is an inspiration to all of us. Faith is a truly wonderful thing to have in your life. Manage your pain and enjoy every day. The battle is not yet done.. As Tig said, there is still fighting to do.

Praying for you and your family....I do believe in miracles....

Ro

Fireman Rob · Senior Member

Hi Duane!

Reading your posts provides me with some much needed perspective right now. Everyone is definitely fighting their own battles behind the scenes. I admire your strength and sense of personal accomplishment.

Keep fighting the good fight, sir. You're a true inspiration to me and I'm sure all of those around you. Keep us posted and enjoy!

-Rob

Groupergetter · Guru

Duane, we're keeping you and your family in our prayers. God Bless

Gracie · Guru

Hi Duane,

I'm very impressed with your strength. You must have great faith, and that must be providing you with some comfort. The truth is there will be some of us on here who will go through the same journey you are, and we can only hope to have the strength and courage you are showing us all. Miracles do happen every day. I'm hoping one happens for you!

Xoxo

wmlj1960 · Moderator

Hi Duane. I'm glad to hear that your pain is not unmanageable and that you have some peace in your life during all this. It's a real gift you have in that you can focus on the time you have to spend with your loved ones and acknowledge that 'it could be worse' if life were to be snatched away suddenly. Sorry about your toys, but I believe God likes cool toys too and we may find bigger and better toys in our future. Hang in there Duane and keep us up to date on what's going on with you. I've learned a lot from you on this forum and I would like to continue to do so. My thoughts and prayers are with you my friend.

Tig · Admin

Hey Buddy,

Good to hear from you! I'm glad you're getting something for the discomfort and wonder if your doc has discussed Methadone as an alternative. The Oxy did a number on me too and the Methadone controlled the pain better, without as many SFX. The Marinol helped a friend of mine a lot and increased her appetite significantly. Grab some snacks, you might get the munchies!!

You're sounding at ease and that's important for all of you. What will be, will be. Just know that this ain't over yet, so don't go getting in a rush. Your faith will carry you through Duane and our prayers are with you and the family. Stay strong and be tough, you've got some fighting left to do old friend. I'm here for ya dude, stay in touch....

Dzdayscomin · Senior Member

Nausea has been increasing this week, i am now waiting for the Nexavar approval and in the mean time I pick up the Marinol tomorrow, it's really hard to tell whats going on with my body right now, as i keep a pretty steady dose of oxy on board at all times, fatique is pretty heavy, but again partly due to the oxy and I'm sure the radiation is having it's effect as well.

All and all i'm pretty much at peace with the whole situation,and I think it is a rather unique position to be in, many people get their lives snatched away without a chance to say goodbye where as I have this opportunity to say all the things one would want to to loved ones and get ones affairs in order to make it easier for those we leave behind.

I do have pains in my abdomen in various locations but nothing real severe at this point.

Funny how much peace a sunny day brings....I truly think it's harder on the Mrs. and kids than for me. Selling all your toys is tough especially when you were just getting to a time in life where you'd be able to start really enjoying them, but that is the way it goes, God has a plan for me and it will be a life of peace and great relationships with no pain or sorrow. I will have to watch the Grand kids grow up from my place in heaven it's gonna be hard for them to understand for many years.

Peace

Fireman Rob · Senior Member

Hi Duane,

I have been eager to hear from you. Hang in there and know there are many of us pulling for you.

Best,

-Rob

Cinnamon Girl · Guru

Hi Duane, good to hear from you with your update.

Sounds like you're coping pretty well with the therapy so far, and it's very interesting that to hear about the medical cannabis. From what I've read it should help quite a lot with the nausea and other side effects.

You're in my thoughts a lot at the moment, and like everyone else here, I'm wishing you all the very best of luck.

Do keep us posted.. hang on in there! smile

mallani · Guru

Hi Duane,

Thinking of you mate. All the best.

Ro · Senior Member

Duane,

Praying that the protocol is working for you. Sending positive thoughts and prayers your way!

Ro

wmlj1960 · Moderator

Thanks for the update Duane. I've also been wondering what you have found out, as I'm sure everybody has been. I hope this new protocol will work well for getting some relief for you. You are in our thoughts and prayers so please continue to keep us updated. Wishing you well! smile

Tig · Admin

Hey D,

Thanks for the update, I've been thinking about you and wondering what you found out. I'm going to have to do some research and learn more about your protocol. Sorry about the nausea, but hope one of those options works. I've heard some positive reports on the use of cannabinol for nausea and think you'll get some help from it. The Oxy's have benefits but have their limitations too. I hope you get some relief buddy. Stay in touch...

Dzdayscomin · Senior Member

Well took the radiation therasphere tx thursday, so far just some nausea and fatigue did another base line AFP test it was up to 1028, now next step is nexavar and they will be prescribing Marinol for the nausea so i may be in the first 100 in our state to go on the medical cannabis.

Said not only will it help with nausea but will make me fell better where i could cut back on the amount of oxycodone that seems to be escalating.

They used the Barcelona protocol to to determine my expectancy, of the study in my class which is C 138 people started after 12 months 68 remained, after 2 yrs 35 and 36 was only 14.

However that was when my AFP was at 775 not sure how that changes jumping to 1028.

Thats all for now.

Duane

Brian1412 · Guru

Yes you want. To see a certified. Financial advisor to make sure you avoid taxedS if any.they know to minimze or avoid. Sny tac consequences

You are in our thoughts and prayers

Groupergetter · Guru

Duane, sorry we are even in the position to be discussing this. Social Security does have a "presumptive disability" which can often be expedited. If you haven't already applied for this it should be a priority. I don't know what health and life coverage you have thru work but usually workplace human resources departments have great info and are very willing to share. Depending upon the life insurance you have thru work, usually it can be maintained if applied for within x number of days after retiring. There are often beneficial clauses written into these policies related to disabilities. Again, human resources is your friend. Many retirement plans at work have different options some of which will give a slightly reduced lifetime benefit to a spouse. All of this can seem daunting but it's really not. Just need to know your options and make the choices which best benefit you and your family.

One day at a time my friend, from the good news and compassion you've so frequently shared with others, it is obvious you already have the peace that passes all understanding. You and your honey are both blessed. :) Even though my "kids" are in there latter 20's rarely a day passes that I don't tell them how much I love them :)

And btw the ladies find me good looking as well.............in my dreams. :)

-- Edited by Groupergetter on Monday 6th of July 2015 12:36:32 AM

Brian1412 · Guru

Yes, you want to find a certfied financial planner and maybe a accountant . If i underdtand the post correctly you want to preserve your work 401k. Cfp and a good accountant could do, for instance a trust. Etc etc for you daughter.. they can show you things where it would be tx free etc and continue to grow as she does..it is a good idea for anyone. The cfp would be the first stop. If the accountant was needed cfp would have someone. I am sorry you are in this position ,pleaze know my family as many other have you in our prayers Peace

Tig · Admin

Hey D,

Good idea to discuss your circumstances with a financial advisor. When I was injured and had to retire, I was fortunate to have a private disability plan through work. It paid my salary and children's benefits until SSDI was approved. Now it pays a smaller percentage to supplement SS. You should contact Soc. Sec. directly to see what options are available to you. Of course your financial advisor should have plenty of advice on it.

As difficult as it can get, just know that it will unfold in front of you. There seemed to be a plan that presented itself, just when I thought things were getting too confusing to handle alone. There are a lot of things already in place that we aren't aware of, at least until some adversity strikes and we discover a huge network of friends and support. I know you're going to get this figured out and as you're dealing with one thing, the next will fall into place. Just take care of yourself and get that medical plan in gear. One day at a time, one problem solved is one problem resolved. Stay positive, stay determined and you will succeed. We've all got your back buddy. That you can count on...

Dzdayscomin · Senior Member

Thank you all very much for your kind words and support, not sure if it just hasn't sunk in yet or what but I feel incredibly peaceful....this is a crazy disease if you saw me on the street you would not believe that I'm in this position...in fact the ladies would find me damn good looking lol.....ok a little self promotion there biggrin or maybe my brain is being affected....LOL LOL LOL.

But really I look and feel just fine so that tends to scare me somewhat..... either way gotta few dr. Appts and the radio embolization Thursday, then after that its on vacation this week and guess I'm gonna retire early so I gotta meet with financial planner to make sure that sweetie pie is set for life at least as far as the $$ goes.

Anyone here know much about accelerated life insurance payouts? Or how about disability for terminal people? I'm pretty sure my work is just gonna continue my salary thru this since I've been with them for over 32 yrs, but they also provide long term disability insurance that pays I beleive 80% of gross would i be better off if it's not taxed on that?all of our paid bennies are thru my spouses work so I wouldn't lose anything in that respect other than my stop the contributions to my 401k .....really love to hear from any tax or financial folks, or other HR people that can offer suggestions to make me at least ponder things i may not even had thought about yet....no suggestion will be considered dumb so fire away if you can.

Again thanks to all that took the time to send well wishes.

Regards,,Duane

Fireman Rob · Senior Member

Duane,

My heart goes out to you my friend. Please don't give up. I truly appreciate you being here for me since day one.

I sincerely hope you find and have inner peace right now. You're strong, please remember that.

Hang in there,

Rob

Greg D · Senior Member

I keep coming back to your post Duane, wanting to say that everything's going to be alright, just hang in there...well do hang in there and take this on and know that words are not enough to express all the support that's being sent your way but we are with you man. Totally. Try taking some Joe Co<ker-Little help from my friends. Powerful stuff and I send those words and the love your way. You are a warrior.

rblood · Member

When I read your latest post Dzdayscomin the story of Dodie Osteen came to mind. here are a few links on it. You can probably find more if you are interested and look for more.

allisonmccunedavis.com/a-miraculous-story-of-healing/

hopefaithprayer.com/scriptures/healing-scriptures-dodie-osteen/

Stormy · Veteran Member

My prayers are for you

Stormy

wmlj1960 · Moderator

I'm so sorry to hear this news Duane. You have been so supportive and helpful to me and everyone on this forum while having major issues of your own. I don't understand why the best people often get dealt the tough hands in life but then I guess some things we are not supposed to understand, not now anyway. My thoughts and prayers are with you my friend.

mallani · Guru

Hi Duane,

Mate, that's a bummer. You're one of the good guys and didn't deserve this. My thoughts are with you.

RudiRoo · Senior Member

I wish I could go up to MN and give you the biggest hug. From my very first day on this forum you showed me how kind you are, which in my opinion, makes you a stellar human. Like everyone here, I am sad and praying.

I am also remembering, that the blessing and the curse of being, is that we do not know what will happen.

My son was in a near fatal accident 8 years ago. For two weeks the neurosurgeon that saved his life came into the ICU and told me he didn't think my son would last the day. I wanted to smack the guy! When it was finally clear he was going to live, nurses, doc, therapists etc. who were all being kind, and wanting to prepare me for the worst, told me don't expect he would come out of the coma, or if he did, would ever walk or talk or even recognize you. Today my son lives independently, with the assistance of caregivers, and not only walks and talks, I can't get him to shut up! When my mom got lung cancer, we looked up the life expectancy statistics (what was I thinking?!) and saw that her doctor's predictions were correct, and she would probably be gone in a matter of months. She lived almost 5 more years.

We just don't know. I'm not trying to fill your heart with false hope. I'm just reminding you, as I have to remind myself all the time, even now, that I don't know what comes next. Life is capricious and unpredictable and I am so grateful for that truth.

Cancer sucks. We endured by making fun of it, by drinking in each minute we had together, by holding hands, so the undertow of fear could not carry us away and waste the minutes we wanted to fill with joy. I try to hold on to that, and I know how hard it can be to do that. But when I can, life gets so much richer.

I pray you smell that new baby smell and eat your favorite cookies, get a puppy, go fishing, love the heck outta everyone in sight, and live like you mean it.

The future is none of our business.

Hugs,

Rudi

Groupergetter · Guru

Sending prayers right now Duane, and will continue to do so in the coming days. God Bless

Ro · Senior Member

Duane,

So sorry to hear this news. Always remember Hope and Faith can see us through very difficult times, and that miracles do happen...

Sending prayers for you and thanks for all the support you have offered to all of us

Ro

MzmiffY · Veteran Member

Hey Duane,

I'm so deeply sorry you have received such devastating news. We are always here to walk with you, should you choose.

If there is anything we can do, please ask.

x

Cinnamon Girl · Guru

Oh Duane, this isn`t what you wanted to hear, none of us wanted to hear this. My heart goes out to you and I`m so very sorry.

You continue to be an inspiration to us with your courage and consideration for others, and I thank you for being so supportive to others here. We`ll still be here for you, you have many good and caring friends here and we won`t be giving up hope.

I`ll be keeping you in my thoughts and sending love and big cyber hugs...

Tess · Senior Member

Hi Duane - Thoughts and prayers are with you. Lots of them. Don't give up - - we won't. Your concern for others while dealing with your own tough news is an inspiration. - Tess

Matt Chris · Guru

Hey Duane

I am very sad to read of your latest update, your endurance and courage always have been inspiring. Leaving your future in God's hand shows you have a precious relationship with the most high and that can give you peace and contentment in many ways. Remember miracles do happen and it could be your time. Also thank you for your valuable recommendations on staying on top of HCC by scans other means, this shows you really care for your fellow man.

Saying a pray for you

matt

Rubye · Senior Member

Duane, you're one of those few people who people automatically and immediately care about, self included. I am so sorry to hear of your bad news, but like Tig says - don't give up. I think you kind of have to accept it and make plans but at the same time there is always hope and there are always prayers, and mine are with you.

Tig · Admin

Hey Duane,

I'm sorry buddy, but I'm not giving up on you and don't think you should either. You're asking for help and healing from the right place. You have to believe and we will send our own healing thoughts and prayers your way. Don't give up old friend, I mean it....

You are a valuable friend and member here Duane. We are here for you, as you've been for us through so many of our own highs and lows. I hope you will continue to share your story and allow us to return the support you have always been willing to give. Do your best to stay strong and determined as you battle this next obstacle. If you need a shoulder to lean on or a hand to get past whatever is in your way, you know where to turn and who is on your side. God bless you Brother...

Michaele · Guru

God Bless You Duane , I know it is hard to wrap your head around news like that . I hope your able to cope with the anxiety you must be feeling. When I was told I had a growth on my pancreas I was scared senseless. Lucky me it was just a cyst . Saying I will pray for you may not bring you much comfort, but its all I got , that and a candle to light the way. Michaele

lilbit · Senior Member

Damn Duane, heartbreaking news. Keep your head up. Miracles do happen. Thank you for being here when we all needed you.

Pam

Dzdayscomin · Senior Member

Well the news is in and it is not good, after having an MRI June 5th and then a triphazic ct scan 3 weeks later it appears the cancer is back with a vengeance and this time there is no escape,it has thrombused (sp?) In the portal vein and I have been removed from transplant list and given what they said is months, i am still going to do Therasphere tx next week as it should buy me maybe double the time if i were to do nothing.

Not much else to add here so probably won't be doing much more posting, thanks to all of those who have provided prayer, support and encouragement along this journey, mans work is done, now it is Gods work that will be done....and he being the perfect healer will choose his will.

Remember to all those that have cirhosiss get those quarterly MRI's and ask every 3rd time or so to alternate in a ct scan they both have their advantages but you may see something sooner in each, as well as watch that AFP if it spikes act very quickly. In a span of 6 months mine went from 10.6 to 325 to 775 and the last jump was in 3 weeks.....so I guess it really was to good to be true !

Peace out Duane

Tig · Admin

Hey D,

That sucks, but dude, you've been jammed up before and made your way out. This time will be no different. You've got a great team of loving and caring people standing beside you, here and at home. Concentrate on the positive, it's always there when you seek it. Enjoy those grand babies, there's nothing that can put a bigger smile on my face and in my heart than my little grand daughter! Hang on bud and PM me if you want to talk.

Brian1412 · Guru

Excellent. Thought IF. It possibly be an option better to present. Than not Hang in there... Peace

Dzdayscomin · Senior Member

Groupergetter wrote:
Hey Duane, I've been thinking about you. Was going to do a post Friday asking if anyone had heard from you. Thanks for keeping us in the loop. I got my MRI results back last week (3 benign lesions) and asked my doc to add the AFP to my liver panel/viral load coming the end of July. I too have had fluctuations in my AFP but nothing like yours. Several months prior to starting the Sovaldi/Olysio mine spiked to over 200 and I was very concerned. A couple months after starting the S/O the levels were back within normal range and to my knowledge no extreme elevations since??? Guess I need to read up on synovitis, thanks.
My daughter gave birth to our first grandchild in March.....an incredible blessing. Watching him grow and seeing the changes brings great joy. The expressions and smiles leave me laughing. Going to spend time with him in just a bit. You'll get through this. Enjoy the time with friends and family it is special. Take care

Thanks Grand kids are awesome ....better then the regular kids...lol but ya gotta do one to get the other....i think grand kids are the gift we get for putting up with our kids....i think they owe me about 6 more before we're even..lol smile

Dzdayscomin · Senior Member

Brian1412 wrote:
Hi Duane What brand of tc did you have how long ago etc. Embryonal? Makes us learn how to bob and weave thru the system so you know...hopefully. your markers stablize and you get your transplant .you are your biggest advocate. Work the. Caregivers who you have delveloped over the years to get thst transplant. As you know tc was a death sentence and now it is 99. Cure rate. As i learnd with hep it is a slow beast but. Reeks a bunch of bad carnarge. Slowly but treatment can slay it. You kmow what else i would do? I would e-mail.Dr Einhorn and ask him any thought in regards to your history and where you are now. He understands. Hep hiv and other as they relate to cancer : he is a grest resource. And so well knowm for cancer worldwide. Evem if it.is out.of his practive he knows everyone in the cancer world. And maybe an asset... it is well worth a try. If you want his email. Let me know and i will private. He will respond quickly..its worth. A try Peace Brian You hang in there.

I think you may have misunderstood i never had testicular cancer i was checked and cleared eliminating that as the cause to the AFP rise, i had HCC which was successfully treated last Oct.

Thanks for the offer on the Dr. But I have full confidence in my entire team, they do everything possible in an orderly fashion, least intervention first then proceed as needed more aggressively they are very skilled and respected. They will find the cause and we will do what it takes to downgrade that AFP # .

Groupergetter · Guru

Hey Duane, I've been thinking about you. Was going to do a post Friday asking if anyone had heard from you. Thanks for keeping us in the loop. I got my MRI results back last week (3 benign lesions) and asked my doc to add the AFP to my liver panel/viral load coming the end of July. I too have had fluctuations in my AFP but nothing like yours. Several months prior to starting the Sovaldi/Olysio mine spiked to over 200 and I was very concerned. A couple months after starting the S/O the levels were back within normal range and to my knowledge no extreme elevations since??? Guess I need to read up on synovitis, thanks.

My daughter gave birth to our first grandchild in March.....an incredible blessing. Watching him grow and seeing the changes brings great joy. The expressions and smiles leave me laughing. Going to spend time with him in just a bit. You'll get through this. Enjoy the time with friends and family it is special. Take care

Brian1412 · Guru

Hi Duane What brand of tc did you have how long ago etc. Embryonal? Makes us learn how to bob and weave thru the system so you know...hopefully. your markers stablize and you get your transplant .you are your biggest advocate. Work the. Caregivers who you have delveloped over the years to get thst transplant. As you know tc was a death sentence and now it is 99. Cure rate. As i learnd with hep it is a slow beast but. Reeks a bunch of bad carnarge. Slowly but treatment can slay it. You kmow what else i would do? I would e-mail.Dr Einhorn and ask him any thought in regards to your history and where you are now. He understands. Hep hiv and other as they relate to cancer : he is a grest resource. And so well knowm for cancer worldwide. Evem if it.is out.of his practive he knows everyone in the cancer world. And maybe an asset... it is well worth a try. If you want his email. Let me know and i will private. He will respond quickly..its worth. A try Peace Brian You hang in there.

mallani · Guru

Hi Duane,

Really sorry to hear that mate. Best of luck for the CT. Really strange AFP readings as your MRI was clear on 5th June?? Cheers.

Cinnamon Girl · Guru

Oh Duane, that`s not good at all about your AFP results, really sorry to hear. And just when a transplant was in sight too. Let`s just hope they find out the cause as quickly as possible and can start working on that. Sorry too about your neuropathy issues, and I can well believe it`s a result of long term infection with the Hep C virus.

At least some issues have been ruled out, and the fact that you can hold down your full time job is great.

The best news of course is that you have 2 lovely grandchildren living close by, they must bring such a lot of joy into your life, that really is wonderful to hear!

Your upbeat and positive attitude is a real credit to you, and I wish you very best of luck with your ongoing tests.

Please let us know how it goes, you really do need to catch a break soon!

Take care, good luck... smile

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