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Bob....update please

+12
Lisa12
Sal
Joanimaroni
Hallmarkgard
Markle
ZVUGKTUBM
RealLindaL
Hospital Bob
dumpcare
knothead
Vikingwoman
2seaoat
16 posters

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16Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 8:20 pm

Guest


Guest

We are fortunate to live in a time when so much is available and I pray your medical care will be exactly was is needed to keep you with us for a long time, Bob.

17Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 8:36 pm

Hospital Bob

Hospital Bob

Reading this is making me realize that cyberworld friends are not a facsimile.   Cyberworld friends are no different than any other friends.  No matter how we communicate with each other,  either in person or not,  we're always still the same human beings with the same feelings.
Thanks,  friends.

18Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 8:40 pm

Markle

Markle

Bob wrote:Thanks to all for your concern.
My tumor is 8 by 11 mm in size.  I'm told if a tumor is larger than 10 mm in size,  I won't have to go through an open lung biopsy.  I can instead get a less invasive one, called a transbronchial lung biopsy,  which is done through the mouth and airways to the lung.
I have an appointment with the surgeon on Monday to see if my tumor is large enough for that method.  If not I'll have to have it done the invasive way.

The biopsy will determine the source of the tumor.  It could have metastisized from my Lymphoma cancer or from my Melanoma cancer or it could be independent of both.   
Once it's determined locally what kind of tumor it is,  I'm going to go to one of the cancer centers in the southeast for further diagnosis and treatment.  Either UAB (Birmingham),  M.D. Anderson (Houston),  Shands (Gainesville),  Mayo Clinic (Jacksonville),  Moffat (Tampa),  or Cancer Centers of America in Atlanta.  Which ones are in my insurance network will determine where I go.

My thoughts and prayers go out to you and your loved ones for a complete recovery. It is sad to me that so many of us are being diagnosed with cancer. Peculiar to me too is that there are so many different varieties.

For what it is worth, over the past 7 years, three very close friends of mine have used the Moffat center in Tampa. One used it twice, once for throat cancer and after 5 years cancer free, she has lung cancer. Each had nothing but praise for that center. I've never been there, I don't have a clue. Personally I opted for treatment here in Tallahassee.

May God bless you my friend. Getting old sure ain't for sissies.

19Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 8:45 pm

2seaoat



Thanks, friends.


No thank you Bob. I never got to say that to T, and I keep hoping all of this week has just been a bad dream. This has been a very tough week in so many ways, but you will always be important to us. We all love giving you crap, and you love slinging it back, but I am so hopeful for your treatment. I am here spitting up blood never feeling better that competent docs went after my NET tumors in my lungs and they performed a miracle....breathing normal. You will be riding an elevator for a few weeks....sometimes going up, and sometimes going down, but the most important thing you are willing to travel out of area for a second opinion from specialist. It will be your best decision.

20Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 9:27 pm

Hallmarkgard



"But the most important thing you are willing to travel out of area for a second opinion from specialist. It will be your best decision." I can surmise that my wife is getting sub standard treatment here in Pensacola? Not every one is blessed with enough money or resources to travel. I guess we just fucking die due to our ignorance.

21Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 9:50 pm

2seaoat



People from all over the country travel to the Andrews center because it is the nation's best orthopedic folks, and sadly there is a quantum leap in treatment from local hospitals and regional centers. I had my lung lobe removed at a local hospital. The pulmonary doc in 35 years had only seen two NET cancer tumors. It is rare. The pulmonary doc who just finished the operation wed at Northwestern told me he has operated on 150 NET cancer tumors and he is only forty years old where my other pulmonary doc was 60 plus.

My local hospital FAILED to put me on Sandostatin shots immediately after getting pathology results from Mayo Clinic that I had the rare cancer. They failed to give me an Octreotide scan which would have clearly discovered that in 2008 I probably already had metastasis on the liver......they just did not have the experience or expertise, and as a result my life has been cut short. Sure they found it......Sure they gave 100%, but they simply lacked the knowledge. You cannot locally be good at everything. Yes, I understand that not everyone can travel to Tampa, but those folks helped me and knew EXACTLY what needed to be done and made a referral to Northwestern where they lead the nation in radio embolization surgery. If I had knee surgery, I would try to see a doc at Andrews.....If I had lung cancer, I would try to travel to Tampa......it is important to get an informed second opinion.

22Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 10:32 pm

dumpcare



Well out of all my clients (have been many) that have or had prostate cancer, most recommend a Dr Scott Tully in Birmingham or his associate's as being the best in the Southeast, I don't know. In fact one of my client's urologist that is located in PC recommended Dr Tully to him. There are other's in his practice in Birmingham damn near as good from what I hear.

I have had some tell me their urologist locally have torn them up, but I have one 80 year old that his local doc put him into remission from bladder cancer. I don't know if it's a shot in the dark, but I tend to believe the top 20 cancer hospitals which MD, Moffitt and NW may use different approaches and stay up with their chosen field.

Lung cancer clients have a mix, many go to Moffitt, some to MD Anderson in Houston and just a couple have had success with the MD docs at Sacred Heart. Not one of them have mentioned UAB to me. Mayo in Jacksonville I don't believe is in the top 20 for lung cancer from the list I saw. Cleveland Clinic in Southern Florida, I believe in Palm Beach is listed.

I do know most of them locally have one thing in common, they don't like you researching on the internet and then bringing it to them. Guess they are just too into their self's. When you tell them I read a research article from Harvard, UCLA, Sloan Kettering, etc, they always try and dispute it. Maybe they are just jealous, who knows.

23Bob....update please - Page 2 Empty Re: Bob....update please 2/5/2016, 11:00 pm

Joanimaroni

Joanimaroni

knothead wrote:Bob allow me to join others here in our collective personal concern regarding the revelation you shared.  Advances in this area are mind numbing and it is my sincere hope that the prognosis is encouraging.  I want you to take that trip you mentioned but not because you believe it's your last hurrah . . . . please keep us in the loop and accept our collective admiration for your strength to fight the fight.


Ditto...perfectly stated.

Moffitt and MD Anderson are the centers I have known most tof utilize.

24Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 12:12 am

ZVUGKTUBM

ZVUGKTUBM

Bob wrote:Reading this is making me realize that cyberworld friends are not a facsimile.   Cyberworld friends are no different than any other friends.  No matter how we communicate with each other,  either in person or not,  we're always still the same human beings with the same feelings.
Thanks,  friends.

This was really well said, Bob. We may fight and jostle over in the Politics Section, but we care about everyone who comes here.

I try to remember all of the folks I hear about here with medical issues in my prayers.

http://www.best-electric-barbecue-grills.com

25Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 11:33 am

Hallmarkgard



One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking. I am sure people are trying to be helpful, but many times they are not. You have to do what you think is best and what is available to you. As a care taker I already have enough enough guilt and stress trying plot a course of action. It is all ways "Have you tired? What if? There is a place in (Blank) that can cure her" Have you tried? You should have went to,,," Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live. In addition to her Liver Cancer she had a large tumour blocking her rectum. By the grace of God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted. Would she better better off if we had went somewhere else? Who know? I damn sure dont.

When your wife is lying a bed, very sick and barely clinging to life, your options are limited. You do what you have to do.

Dont be too quick to dismiss all your local options as quackery...

26Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 12:07 pm

Guest


Guest

Hallmarkgard wrote:One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking.  I am sure people are trying to be helpful, but many times they are not.  You have to do what you think is best and what is available to you.  As a care taker I already have enough enough guilt and stress trying plot a course of action.  It is all ways "Have you tired?  What if?  There is a place in (Blank) that can cure her"  Have you tried?  You should have went to,,,"  Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live.  In addition to her Liver Cancer she had a large tumour blocking her rectum.  By the grace of  God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted.  Would she better better off if we had went somewhere else?  Who know?  I damn sure dont.

When your wife is lying a bed, very sick and barely clinging  to life, your options are limited.  You do what you have to do.  

Dont be too quick to dismiss all your local options as quackery...

I admire your care for your wife. You answer to no one as you both make the best decisions afforded to you at the time. So happy to hear she is progressing well. I hope she enjoys her outing today. Take care.

27Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 1:13 pm

2seaoat



Sometimes local treatment is excellent. After getting a second opinion, most return to local treatment. However, to not acknowledge that there is a wide spectrum of care in our health care system which gives research and teaching centers a huge advantage in the treatment of cancer is avoidance of truth. I do not need a lecture to tell me about the suffering of cancer. I have seen people crying because they could not afford the medications necessary to buy more time, or to even breathe because our health care system is unfair. I have seen a man who was only four years older than me in quiet desperation asking how he could get another needed sandostatin shot because Medicare would not pay for the same and his hormone counts were going up......11k for a shot which nobody can afford without insurance, and are available in Canada for 3k. The reality is that the best care for cancer is at those leading cancer research centers and that Florida has one of the best in the nation in Tampa.

I also have seen the caretakers grouped around their loved ones on the infusion floor......month after month of pain and guilt, and entirely helpless to change the reality and so necessary for the quality of life of the stricken. You can get angry at me for your perception of me putting down local cancer care, but I proudly bragged about how good my local hospital did in removing my lung, and finding the cancer.......completely in the dark that their standard of care was killing me because they had not put me on sandostatin, and had not used the correct cat scan to find my cancer as I was bragging on what a great job they had done the tumors were pumping hormones and spreading like wildfire when a competent regional oncology team would have had me immediately on Sandostatin, and used an octreotide scan which would have caught my metastasis on my liver and allowed a resection of the same.....blind in my ignorance, and loyal to the good people who were helping me locally, I made a critical mistake of not getting a second opinion until it was almost too late. I would NEVER allow another to make my mistake without advising them to go to a regional center for a second opinion. I gave you the same advice, and despite that advice you have had excellent results locally in your wife's treatment. I am happy for both of you, but hell will freeze over before I change my advice to Bob to get a second opinion at a regional cancer center, where he probably will come back locally for most treatment, but depending on his pathology.....maybe not....maybe it is a matter of life or death, and they may be the difference.

28Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 1:15 pm

Joanimaroni

Joanimaroni

Hallmarkgard wrote:One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking.  I am sure people are trying to be helpful, but many times they are not.  You have to do what you think is best and what is available to you.  As a care taker I already have enough enough guilt and stress trying plot a course of action.  It is all ways "Have you tired?  What if?  There is a place in (Blank) that can cure her"  Have you tried?  You should have went to,,,"  Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live.  In addition to her Liver Cancer she had a large tumour blocking her rectum.  By the grace of  God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted.  Would she better better off if we had went somewhere else?  Who know?  I damn sure dont.

When your wife is lying a bed, very sick and barely clinging  to lifye, your options are limited.  You do what you have to do.  

Dont be too quick to dismiss all your local options as quackery...



So glad your wife is doing better. When you first posted the prognosis seemed grim...your care and constant vigil by her side had a very profound affect.

We have a team of very good doctors in our area. And like everywhere else some not so great.

Again, still praying for your wife and you.

29Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 1:23 pm

2seaoat



People need to get second opinions in cancer treatment. Period! If a person is in a position to get that second opinion at a leading research or teaching hospital, then get that second opinion at the best cancer centers in America. The fact remains that the vast majority of those stricken will continue to get MOST of the their care locally, but that second opinion is critical and may be the difference between life and death.

30Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 1:33 pm

2seaoat



http://health.usnews.com/best-hospitals/rankings/cancer?page=2

There is not much difference in the top 25, but there is a huge difference between the local hospitals in a community and those top 25. Moffitt is top 25, and probably number one in many areas of cancer as it was in endocrine cancer. Please note you could go down five hundred hospitals and not see the local hospital I used to have my lung removed or find a hospital other than Andrews which would be top five hundred in the Pensacola area. The difference in cancer is huge. A second opinion is huge. Please Bob get that second opinion at a top 25 facility, they will probably confirm your local doc, but you need to completely exhaust your options.

31Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 1:35 pm

Hallmarkgard



Lets see how this works Say your wife doubles over in pain one afternoon while you are both working on a building project. You rush her to the emergency room and they start to find out what is the matter. 3 days later , you are meeting with her doctors in her hospital room. They inform you that she has stage 4 liver cancer and a large tumour in her rectum..She weak and in a lot of pain. The doctors want to do surgery to remove the tumour. So now you have sick wife with impending life threatening surgery. I guess now is when I should have said "Fuck you guys I am going down south for a 2nd opinion!!"

32Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 1:45 pm

2seaoat



Lets see how this works Say your wife doubles over in pain one afternoon while you are both working on a building project. You rush her to the emergency room and they start to find out what is the matter. 3 days later , you are meeting with her doctors in her hospital room. They inform you that she has stage 4 liver cancer and a large tumour in her rectum..She weak and in a lot of pain. The doctors want to do surgery to remove the tumour. So now you have sick wife with impending life threatening surgery. I guess now is when I should have said "Fuck you guys I am going down south for a 2nd opinion!!"

That was my exact lung situation as the pnuemonia and collapsed lung did not give me the time to get that second opinion, and the local folks operated. However, we are talking about what is best for Bob, not trying to rationalize your or my health decisions which were emergencies. Bob has a small metastasis in his lung which fortunately gives him time to get a second opinion, and to advise him to only use local medical input is flat out wrong and selfish to somehow justify something which is NOT relevant to Bob's care. He should immediately be making an appointment at a top 25 to map his course of treatment. If I had his time, I might have been able to beat this damn cancer, but instead they cut it out, did not use the proper sandostatin to treat it, and failed to even know what an octreotide scan was to discover the metastasis on my liver which in 2008 would have allowed a resection of my liver and my being cancer free today......the pulmonary doc just shook his head at the care I got at my local hospital who like you I praised until I realized their lack of knowledge had killed me.

33Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 2:10 pm

Hallmarkgard



Just for yucks, they did not operate, we refused the surgery and found a doctor who used radiation and he was able to remove the tumour with 33 treatments. AS for "...the pulmonary doc just shook his head at the care I got at my local hospital who like you I praised until I realized their lack of knowledge had killed me" LOL No it was your lack of knowledge, not theirs..

34Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 2:39 pm

2seaoat



No, it was their lack of knowledge.....I was the one after surgery who came to my pulmonary doc and asked if I had been given an Octreotide scan, and he answered.....what is that? He said the PET scan would pick up anything. He was wrong. I was right because I was reading. I went to competent folks who were at Moffitt and Northwestern, and they have been keeping me alive despite the lack of knowledge from the local folks. Bob needs a competent second opinion at a top 25, not an illusion that there is no difference in care.

35Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 2:46 pm

Hospital Bob

Hospital Bob

This is where I'll be going.  I have friends in Galveston who I can stay with.
And it's affiliated with Sacred Heart (where my oncologist is now).

Bob....update please - Page 2 Number10

36Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 2:48 pm

dumpcare



Hallmarkgard wrote:One thing that really pisses me off about Cancer is the constant 2nd guessing on the treatment path you are taking.  I am sure people are trying to be helpful, but many times they are not.  You have to do what you think is best and what is available to you.  As a care taker I already have enough enough guilt and stress trying plot a course of action.  It is all ways "Have you tired?  What if?  There is a place in (Blank) that can cure her"  Have you tried?  You should have went to,,,"  Very seldom do any of these well meaning people know the scope and full details of the issue that you are addressing.

Last April my wife was given 6 months to live.  In addition to her Liver Cancer she had a large tumour blocking her rectum.  By the grace of  God and the good doctors at Sacred Heart, her tumour is gone and today she will drive herself to visit her sister across town. She is progressing better than anyone had predicted.  Would she better better off if we had went somewhere else?  Who know?  I damn sure dont.

When your wife is lying a bed, very sick and barely clinging  to life, your options are limited.  You do what you have to do.  

Dont be too quick to dismiss all your local options as quackery...

I am glad your wife is getting better and you are absolutely right, like I have said before I know people who rave about the cancer doctor's at Sacred Heart and I can only think of one instance of a bad review. I believe they work more closely with MD Anderson in Houston than when they first became affiliated. Beside the two lung cancer clients that are in remission I also know a guy who was diagnosed with I believe it is AML the deadliest from of leukemia, after almost two years of treatment at SH he's been in remission a year and a half.

37Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 2:50 pm

2seaoat



Home run Bob. It is rated top five year after year in the battle against cancer and to have a connection with your local oncologist is even better. My doctor at Moffitt had a personal connection to my oncologist at Northwestern, and they still share on my case. You have made the best choice and I am optimistic that those folks will leave no option off the table to allow you a path to beat the big C. Just do not go there during hurricane season, because we both know about darts and Galveston's history of not knowing when one was coming.

38Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 2:54 pm

dumpcare



Bob wrote:This is where I'll be going.  I have friends in Galveston who I can stay with.
And it's affiliated with Sacred Heart (where my oncologist is now).

Bob....update please - Page 2 Number10

You're going for 2nd option? After biopsy here? Treatment?

39Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 3:06 pm

Hospital Bob

Hospital Bob

ppaca wrote:
You're going for 2nd option? After biopsy here? Treatment?

Yes I'll get the biopsy here.  And then go there for further diagnosis and treatment.  At least that's my hope.

40Bob....update please - Page 2 Empty Re: Bob....update please 2/6/2016, 3:15 pm

2seaoat



Bob, this is very important. When the biopsy is completed they will do pathology locally. My local hospital after my bronc biopsy told me three days later that I was cancer free, however, my pulmonary doc to his credit had not seen NET tumors but twice before mine, sent biopsy slides to Mayo clinic immediately. Five days later my phone lit up and everybody was telling me I had to immediately go into surgery because I had a rare cancer which we now know as the cancer which killed Steve Jobs and my pathology indicated that it was particularly aggressive. If I had not had the slides sent to Mayo, I would have been even further screwed. Make arrangements prior to the biopsy to have the slides sent to the Anderson folks you will be seeing and allow their pathologist to make a determination in conjunction with the local folks. It is common to send these slides digitally for pathology analysis by the best.

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