The Derb

[N3DRB The Derb]

Hi everyone,

I decided to start a new thread on Tim because I don`t really feel like hunting for the old one at the moment....

About a week ago, Tim started having some seizure problems and had to be sent to a hospital in Cumberland MD. While there, he underwent yet another MRI and was again told that his cancer has come back and that he needs treatment.  We decided that we needed a third opinion since the Roanoke docs told him twice that he is in remission, and one other hospital told him he DID have cancer before that... So long story short, Tim decided to go back to Georgetown Hospital and talk to dear old Dr. Jean (I type that with sarcasm and disgust) and  he also tells us that the cancer is back, his scans back in May showed that it was back, and he doesn`t understand how they could have thought otherwise. Tim is going to have another brain operation on Tuesday morning, and Jean also told him that he will completely lose the use of his entire left side, and "barring some type of miracle" he will never walk again. He will be wheelchair bound from now on.

That news just threw me for a loop since he was progressing in his therapy at the rehab facility and was beginning to walk again with a walker. He was very close to being able to do transfers(in and out of bed, vehicle, bathroom, etc) for himself and that was the key to him coming home. So now we don`t know what`s going to happen. He may not ever be able to come home, we just don`t know until after the surgery. Tim said the doc at Cumberland told him the same thing about losing the use of his left side. Apparently no one else thinks he ever had a stroke except the docs in Roanoke and they`re not even sure about it, they were pretty adamant, though, that his cancer had NOT come back.

So the last 3 months have been devoted to getting Tim on his feet so he can come home, and good ol` Doc Jean totally crashed that party with the news yesterday.  

Sorry to be writing with more bad news.  
If anyone wants to give Tim a call, his # direct to his room is 1-202-444-5048.
Glo

[Ralph W3GL]

    DAMM !!!

[WA3VJB]

You've got some strength Gloria to sit down and keep us updated at a time like this. Thank you for that.

Two things really bother me about all this -- inconsistent answers from your medical experts, and that none of the answers seem to be any good.

I fully agree with Ralph.

    DAMM !!!

[W1RKW]

This news hits very close to home for me.   This down right sucks. 

Gloria, have you considered going to the Mayo Clinic in Minnesota?  They're considered the best when it comes to brain cancer and brain cancer surgery.

[The Slab Bacon]

THAT REALLY SUCKS! ! ! ! ! ! !

this is pretty upsetting news for me. DAMN IT!!! ! ! !!!!     

Gloria, if there is anything that I can do, PLEASE DONT HESITATE to call me.

[N3DRB The Derb]

This news hits very close to home for me.   This down right sucks. 

Gloria, have you considered going to the Mayo Clinic in Minnesota?  They're considered the best when it comes to brain cancer and brain cancer surgery.

Well, it`s not my choice, it`s ultimately Tim`s, and this is what he wants to do. If it were up to me, he wouldn`t even be at Georgetown. No other options were presented to us as far as what type of treatment he needs.

I hate Dr. Jean.

[N3DRB The Derb]

THAT REALLY SUCKS! ! ! ! ! ! !

this is pretty upsetting news for me. DAMN IT!!! ! ! !!!!     

Gloria, if there is anything that I can do, PLEASE DONT HESITATE to call me.

Thanks, Frank, I really appreciate that and so does Tim. 

[N5RLR]

Just...incredible.

My thoughts and prayers are with Tim, and you, Glo.

[KB2WIG]

Glo,

Just 'caus Tim's wishes are to go with your friend, it doesn't mean you can't send the pictures to other specialists.....  I like Bob's idea. Maybee send a set of pics to Mayo Clin. and a few other places........ things might change.



klc

[K1JJ]

Glo,

Sorry to hear things ain't progressing well for our good buddy, The Derb.

Yes, the guys are right - send out the pics to different expert specialists and see what happens. It can't hurt.

Sure hope things improve soon. Keep us informed.

Tom, K1JJ

[W3RSW]

The very best to Derb and you, Glo.
I'm sure I'm mirroring many others' thoughts and prayers for Derb.

[Carl WA1KPD]

Best to you and the Derb. He has been the "Energizer Bunny" so far and we believe in him!!!!!

[WU2D]

Gloria,

I am so sorry to hear all of this.

Getting to the right facility is important to survival. My doctor could have let me go to Dartmouth here in New Hampshire only 1 hour away (world class for what I had- an aggressive form of leukemia), but instead he kept me waiting and worrying with my family for three days until a bed opened up at Dana Farber in Boston. Good thing my insurance company did not balk at this! Another guy who I knew also got sick the very same day with a similar type and he went to Dartmouth. The weird story was that one of my boy scouts was looking for him in the local hospital and found me instead causing much confusion.

Everything went well for both of us for the first three months, we both went into remission, but long story short - after 6 years he is dead and I am cured.

Mike WU2D

[K9PNP]

Gloria, have you considered going to the Mayo Clinic in Minnesota?  They're considered the best when it comes to brain cancer and brain cancer surgery.

I agree with Bob.  Mayo is the best around at what they do.  We are praying for you and Tim.

[N2udf]

Remember it is only a license to "practice" medicine.Don't be afraid to hurt a doctors feelings.Best of luck,Lee,N2udf.

[Opcom]

I am sorry to hear this news, it's like taking the wind out of the sails. Tomorrow is Sunday or, today is, we'll pray also. Please get that other opinion.

[W3SLK]

Gloria,
I'm not real close to Tim but have been watching from the sidelines. I don't suggest this to get your hopes up but I have seen first hand, Fox Chase Cancer Center in Philadelphia, pull proverbial 'rabbits out of the hat'! Several people I work with have been treated there and their life outlook has been greatly changed. Drastic times call for drastic measures. I wish both you and Tim well.

[Carl WA1KPD]

Fox Chase Cancer Center in Philadelphia,

They did a wonderful job with my sister who had a very aggressive form of lymphoma with a bleak outlook for adults,
She is a Physicians Assistant so is very alert to patient care and was quite pleased with them.

Good news is 2 years later she is home and getting her strentgh back

Carl

[VE3GZB]

That news make me feel very sad. I'm very sorry for your shared struggle. I'm keeping you and he in my thoughts.

geo
VE3GZB

[WA1GFZ]

so if Derb is getting better, why is he getting worse?
Something doesn't add up.

[W2PFY]

Hello Gloria, Sorry to hear about Tim's continued problems with his battle with cancer.

I said a little prayer for him. Hope it helps.

Terry

[Ed-VA3ES]

Terrible news!  I just don't know what to make of this - getting conflicting reports from different doctors?  You definitely need another opinion.  I concur with those who have suggested the Mayo Clinic...or  even  the Fox Chase Cancer Center in Philadelphia.  You need another opinion from real specialists, not flailing  quacks!!!!

I am so sorry to hear of this.    Just damn!     

[WD5JKO]

Gloria,

    I have been reading the posts from Derb, and later from you for quite some time now.

    Mainstream medicine has both saved me, and nearly killed me. I could site case after case where my own study leading me to ask the doctor questions, has lead to a solution. I did this for my wife too. Many doctors don't have the time to look at the person, so instead focus in on a specific ailment. Then many are also linked to big-pharma, where they have a pill for everything.

    The fact that Derb had a calcium loss leading to his collapse (bone breakage) suggests the doctors weren't looking for that. But doesn't prolonged prednisone intake combined with low vitamin D levels (most of us are low) lead to bone loss? There are simple checks for this, and the fixes don't have to be prescription drugs. My father died (bleeding stroke) from taking too much blood thinner. The doctors were not testing his blood level. My point is that doctors in order to be effective, we need to study the situation and be armed with tough questions. If the doctor pushes back, then find another doctor. I know, the insurance issue, costs, etc. can make this all the more overwhelming.

    I've never fought cancer, but I'm seeing a rash of it with neighbors, co-workers, inlaws, and friends. The sampling is not good for any statistical analysis, but I see the treatments killing the patients, until they give up (stop the chemo), immune systems ravaged, and then the cancer finishes them off. This is so tragic. But is it preventable?

    I link the following information for reference only. I do think this is good reading though. I hope this information might raise important questions.

All the best to you both
Jim
WD5JKO


http://www.cancertutor.com/Other/Brain_Cancer.html

"Brain cancer is one of the trickiest types of cancer for alternative medicine to treat. While it is easy to kill the cancer cells in a brain cancer patient (many alternative cancer treatments easily penetrate the blood-brain barrier), it is not easy to safely kill the cancer cells. The problem is that the debris from dead cancer cells can be very difficult to safely remove from the brain.

Other problems are inflammation and swelling. Before a cancer cell dies it gets sick. The problem is that once the cancer cell gets sick the immune system recognizes the cell as being sick and attacks it and this causes inflammation and swelling. This is not good to happen inside the skull."
   

[w3jn]

Glo, I'm so sad for you and Tim.  Both of you have already been thru more than anyone should ever have to.

Might I suggest a consultation at Johns Hopkins?   My wife did neurosurgery anesthesiology at JH several years ago and still knows some docs there.

[K5UJ]

This is extremely disappointing to say the least.  JN is right on.  Johns Hopkins and Mayo Clinic are two of the three best cancer centers in the country.  The third one is in NYC, I think it is Sloan Kettering but don't hold me to that.  J.H. is in Baltimore and closer to your location anyway.   

Rob