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Now what?

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Now that my doc has given me 8-10 months, and said that this is Non-curable, what now? We are looking into trials an options, looking at hospitals like MD Anderson in Houston, UIC (Chicago), Mayo, etc.

I guess what I am saying is there any chance that the doctor could be wrong, and that one of these trials nay give me another 3 yrs, five years of should I just start planning for the inecitable?

Still waiting on word from UIC and calling Anderson later on today...they are supposed to be no. 1 in the country. Anyway, maybe I am in just denial, but is there a sliver of hope?

Grasping at straws,
Robert Eckhart

Redbanker's picture
Redbanker
Posts: 33
Joined: May 2011

Bob, there is always hope and so many stories to back that up. I was thinking of the author Katherine Russell Rich who was able to live 25 years past a Stage 4 breast cancer diagnosis. I heard her interviewed last year and she talked about enrolling herself in a new trial every time she had a setback. Then I recalled the results that UPenn had with a trial for chronic lymphocytic leukemia in which they were able to effect a cure. Every advance, every cure had its genesis in a trial, in some researcher’s best guess. The kicker will always be the how punishing is the treatment and also picking the most promising if there is more than one trial. I’d just say keep researching your options and make your decision as each comes into focus. You have my prayers for the best possible outcome.

Nancy

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

I can't improve on Nancy's answer, except to repeat that yes, there is always hope. Sometimes, remission is enough.

Deb

Sam999
Posts: 305
Joined: Mar 2012

Hi Bob,

So sorry to hear this. My thoughts and prayers for you and your family. As they say, docs can give you any diagonasis but biggest decision maker is up there in the sky. I have heard many stories of docs giving few months and god giving much longer.

Did you look into bitter almond kernels. If you look it up on amazon, some folks have put some really good reviews. I personally do not have experience with it.

Hope something works out for you. You may also want to post on oral cancer foundation site, there are bunch of good folks that help a lot too.

Sam

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Bob, I'm so very sorry to hear what you're going through. There are people who survive the most frightening diagnoses. Even when the odds are not good, someone survives. And that someone could be you. I live in Boston and there are a lot of clinical trials going on around here. If you happen to find anything in the area and you need some logistic support, feel free to contact me.

Best of luck to you my friend.

Dre.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I commented on a post of yours yesterday Robert and as I said
my heart goes out to you. Just wanted you to know that on CNN
this morning was Dr Sanje Gupta talking about a cancer "cure"
being researched at MD Anderson for Breast, Melanoma, prostate,
Luikemia and lung cancer. They have been given $3 billion to resaerch
takeing the persons "immune system" and programing it to remember and
respond to when a threat (cancer) returns to the body. This is what
I have talked about in many of my posts. Please contact me personally
and I or my wife will give you some very valuble information that you
can research yourself.
When faced with a situation like you are in explore all possibilities
and you will find something that works.

God bless
Tonsil dad,

Dan.

denistd's picture
denistd
Posts: 486
Joined: Apr 2009

I thinks it would be great if you could get that info to both Bob and I. Denis

Hard12Find
Posts: 200
Joined: Sep 2012

Not to make light of your situation, I know we all have pondered, treatment versus quality of end of life. I can't imagine a tougher situation to be faced with, but every time I hear someone says the dr. Gave me xx months, it reminds me of a little joke with hidden meaning. So here goes,

The man was at his doctors office and the doctor told him he had six months to live. The man replied " SIX MONTHS ! " I won't even be able to pay your bill in six months, to which the doctor replied well in that case you have nine months...........

The moral of the story is that no man can tell you when your are going to die, our doctors are smart compassionate human beings, but still human none the less. I would take it as a challenge, find and try clinical trials, naturopathy, as well as preparing yourself mentally and physically, and spiritually to accept whatever comes your way. You can give up and no one here would blame you, but I for one intend to go out fighting, with my head held high.
If cancer takes me, I know I will have gotten in some good licks. Only you can decide whether to put the gloves back on and stay in the fight, or spend time making things right with friends and family.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Definitely look at other facilities and get more opinions....

Thoughts, Prayers, Hopes and Dreams...
John

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Bob, I would refer you to Hondo for guidance. He was given bad news too, several years ago. I don't want to speak for him, but I remember his story was also dire.
All I can say is that I follow the philosophy of Lance Armstrong and Jim Valvano. Jim's is "never ever give up" and Lance wrote that "pain is temporary, but giving up is forever"
I am praying for you to find the strength to fight on and keep looking for some type of treatment as you go forth. You may be the one that the new treatment helps. Keep looking!
again, keep up the fight and never give up.
Steve

ditto1
Posts: 630
Joined: Mar 2012

going to change how you feel but thats all we have to offer. I know and most would agree if we are told a time frame to live it would turn our worlds upside down and not sure how we would react. That said you will need to take it one day at a time for now, and research all your options and as others said there is no wrong answer, fight if you have options and or enjoy what ever God has planned for you. All I can say is you and everyone on these blogs have known of someone who was given a death time frame only to be around for many years,, maybe the exception not the rule, but who says you cannot be the exception and share your story years from now. My exwife was dx with a brain tumor when she was 13 with a 1-2 year life span based on her dx, well she is 55 now. I share this because this is a story I know personally. God Bless you Bob

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

obviously youve been dealt a tough hand. Dont put much stock in the survival numbers youve been given, though. Those numbers are not writ in stone, and only make general sense when looking at averages, not individuals. We have seen people here who are alive with disease ten years after being given your prognosis. And for the rest of us, there is no idea what tomorrow has in store. So get on with your life. Do whatever you decide on your disease, but dont let the disease claim one unnecessary second of your time.

Pat

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

When dad had his reoccurance last september they told him a year at the most. Well it has been a year and he has no problems that we know of. He will get his results on Tuesday. But the point is we did not give up. We fought the ENT and demanded he try a new chemo and it has worked for a year. So please do not give up hope.

Kathy

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

yes, your doctor could be wrong. you're doing right to get as many medical opinions and possible courses of treatment as possible.
please let us know what anderson says--their new "moonshot" initiative is certainly impressive.

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

Maybe not by coincidence, my cousin who was told to get his affairs in order and now is 8 years cancer free, is also named Bob. He had mets melanoma and participated in a clinical trial. I will keep you in my prayers.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

You probably already know this: the National Institutes of Health maintains a website of clinical trials at http://clinicaltrials.gov

I also like Hondo, who has embraced alternative methods after the docs gave up on him. There is a time to give up, but it doesn't seem to be the time for you to give up. If it were your time, you would not be asking these questions. Hope I didn't speak out of line. Rick.

KareGiver
Posts: 289
Joined: Apr 2011

My husband is currently in a trial at Loyola (Chicago) for mets found this past April. He just got a second opinion at University of Chicago this past week. He was offered a trial there if he wants it. There are definitely options out there. In April, they told my husband - 7 months to live without treatment, a year with treatment - some people do better. We're looking towards the "some people do better" thing. At the very least, he is getting things in order and planning on living life to the fullest however long it may be. I believe you are younger - which I think would be in your favor. DON'T GIVE UP! Please PM me if you feel I can help you in any way. Take care.

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

Dearest Bob,

There is always the chance the doctors are wrong and you have many more years ahead of you.

Best,

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

There is a chance the doctors are wrong, I agree fully that you should look into trials and studies.
I am praying for you and for the perfect treatment.
Billie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Somebody has to be the exception. Hope it's you in this case. The reason we have so many wonderful drugs today is at least partially because we had people in trials making great strides.

katenorwood
Posts: 1808
Joined: May 2012

Bob,
It sounds like you're doing everything in the right way ! Our best fighting gloves on, and continue to beat this demon back ! I'm praying every nite for you and your family. Katie

josh r.
Posts: 178
Joined: Oct 2010

Bob,
In July I was given 10% chance of seeing Christmas, this was in 1991! I believe that I am still here because of fine doctors, loving family and friends and Faith. I am praying that you have the same winning combination going for you. You certainly have us on this site.
Hang in there, Josh r.

nick770's picture
nick770
Posts: 195
Joined: May 2012

Keep fighting and look for clinical trials dont let the doctor decode for you.

fisrpotpe's picture
fisrpotpe
Posts: 1320
Joined: Aug 2010

Robert Eckhart, my choice would be either or both..... but most certainly "Never, Never, Never Give Up"

hugs to you and your family

john

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Hi Bob

When my NPC came back a third time I to was told all that could be done was more Chemo and that I only had a less then 5% change that it would even work. I went home to Honduras to see my family one last time and while there did A.C.T. all this was back in 2006. I am still here today, I suffer with a lot of side effects of all the radiation treatments to the head and I can no longer swallow food, it all goes through a Peg Tube now, but I am still alive 6 years later. I still work full time as a Maintenance Manager for an offshore Diving Company. I am not as good as I once was and they know that but I still retain 35 years of doing what I do, and that you can’t learn in a School or in a book. Keep looking, and don’t just look; keep an open mind on different types of treatment and your prayers asking God to help you find what you need to be doing. I don’t believe in Non-Curable.

I am praying for you my friend
Tim Hondo

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I can't say any better than what the long-term survivors (who have been through sooooo much more than me) have said on this post. I can add to what all the others on here feel, we did not want you to get such news, and if only there was a way to make it all go-away...

..with that said, the only fix I know is prayer...so I too will be praying for you ....that you will be around for many, many years and we can all look back on these posts and relish the extra time

Best,

Tim

bjohn
Posts: 17
Joined: Oct 2011

My husband was diagnosed with an olfactory neuroblastoma on 3/2011. His was stage IV.We were treated at a large center in Chicago and got a second opinion at U of C when he had a reoccurance 1 year later. No study was available but they did more aggresive treatment which he just finished. He had a great response and feels the best since diagnosis. He is a very positive person and all I can believe is that someone has to beat the odds sometimes. Being a nurse, I have also seen some amazing recoveries! Best of luck

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Bob,

I see lots of good advice here - second opinions, clinical trials, lots of folks beating the doc's guesses. Best one - keep a positive attitude, we're all pulling for you.

Best
Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1374
Joined: Jul 2010

Remember, no two people or no two diagnoses are the same. When I was first diagnosed in August of 2010, my docs were pretty much like "get your affairs in order. I was stage 4 and after my second surgery I was rediagnosed stage 4B and I still beat this ****. I start chemo again tomorrow morning to combat a recurrance, and do not care what the statistics say, as my deal is just that, my deal.

You stay strong, and your deal is just that, your deal.

Praying for you brother.

Best

Mike

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