Topic: Miracle Man

Hi Fun seekers! Here I am again with another Miracle Man Update. Not as cheerful as usual but working on it. Last Wednesday (over a week ago) Teddy went in to have the tube changed in his kidney for drainage. Had nothing but problems and went to Emergency Thurs and Fri. He finally leveled out with it but it is extremely uncomfortable.  In the meantime he had his PET Scan (waiting for results) and Cigna has denied his Cyber Knife Surgery on the Cancer that returned to where the duodenum used to be. The cyber doctor is working on getting Cigna to approve. We now know that the mass is pushing against the right ureter crimping it so that is why he cannot urinate normally from the right kidney.
Went to his new Oncologist yesterday (old one retired) and liked him. He reiterated what we had been told by all the others, that radiation and chemo will not really help his kind of CC and that cyber knife is the way to go. His LAB work was quite good. This monster is laying at the top of the pancreas and near the right kidney. 
One day we feel better about it all then we have a day like today where I look at him and see a sick man. He still tries to go to work once in a while! We have put our house up for sale as I cannot handle it all. Moving a little closer to my daughter to a beautiful apartment once we sell. Its a little hot in Phoenix right now so not too many people are looking.
Someone told me to get in the car, drive somewhere and scream. It helped but I felt ridiculous. I ask myself if we have all this time becaue it is slow growing,  why does he look and act so sickly? Just had to let off a little frustration here. Thanks for listening....lainy

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miracle Man

This time the news could be better...Just got a call from the Cyber Knife Oncologist. CIGNA will not allow the surgery as Teddy has not had any other radiation yet! Such stupid, ignorant rules!!! The PET Scan showed that the mass is there as we knew and that some lymph nodes that did not light up in the scan do look worrisome. Plan of attack is IMRT Radiation for 5 weeks and then ask CIGNA again. So, tonight we will reorganize our thoughts and once again hope for the best and do a lot of praying!!  Something nice though has happened. Teddy's kids have decided to have a family reunion over Labor Day weekend here in Phoenix and so far we have 23 people coming in!! SWEET!
But in the end how can an insurance company put stipulations on a life saving procedure!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miracle Man

Hi Lainy... I can feel the heat right through the internet lines!  Insurance Companies are so so so! I'll leave it at that.  If they could only look at the big picture and look ahead.
Admire your come back attitude though and your plan of attack.  I had IMRT twice in the last year plus.  Directly to my one and only lobe of liver and another tumor tickling my spinal nerve roots   Both areas still remain reduced and stable no growth. 
You guys have a very happy family reuion!  I had mine in Maine three weeks ago and loved it.  I Ate three Lobsters in one setting.  Well, my wife Valerie could only eat one of hers sooooo  Ha!  Marion (moderator) I know you are reading this. I just could'nt resist.
God Bless You All,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Miracle Man

Jeff, you crack me up (along with the cracking of Lobster). Teddy wanted to know if you had any side effects from the IMRT as the doc said they would be minimal. Thanks for your update on that,  it made him smile after the bad news.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

5 (edited by JeffG Mon, 14 Jul 2008 20:43:32)

Re: Miracle Man

Hi Lainy,  Only side effects was slight itchy at and around point of beam entry and some tiredness.  I had two 15 day treatments to two different areas spent more time driving back and forth .  Usually checkin 5-10 minute wait, 5 minutes treatment to get the different 3-D angles to encompass most if not all of tumor.  Of course this all depends on how well organized the radiology center is.   Marion,( My Bestest Co-Moderator) I had a plate of lovely sea scallops the night before lobster Ha! A man has Got a eat! I did have a big healthy coleslaw with them.
Ta Ta  for  now!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Miracle Man

URGH. Insurance companies and their hearts of gold and logical thinking. Best of luck on the different plan of action.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

7 (edited by marions Tue, 15 Jul 2008 15:39:55)

Re: Miracle Man

O.K. Jeff, you did it again,
I am clinching when reading about your dietary habits especially, when you describe the greasy, dripping, Subway sandwiches or, the pizzas and I bet you dunked the lobsters in butter, too?  I will compensate by eating a vegetarian sandwich in your honor.  You always make me laugh.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Miracle Man

Lainy,

This is very difficult to go through without family around, one person cannot possibly do it all and shoulder the worry, I hope you can soon be near your daughter. The car is also one of my falling apart places, I don't even try to stop, just let the crying finish itself.

Patty

Re: Miracle Man

Thanks Patty. What I have discovered through these 3 years is that when handed news we do not like, we talk and think about it and usually within a day we have regrouped with new battle plans. Once a new plan is in place its like that was what was needed, just a plan. Not that we sit here doing nothing.
Just waiting now for the schedule of Radiation and we will be on our way. I guess I don't want to waste valuable time with my own pity parties, how ever deserved they may be. And today...is our 14th Wedding Anniversary. 3 Years ago didn't know if we would make that. We are grateful for the additional time.
Last night we talked about making the 25th!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miracle Man

Good Morning Fun Seekers!  I have a silly question. Can you tell me what the norm is in getting Radiation scheduled...I mean how long does it take? We were told a few days and that was Tuesday and today is Friday and no word. Yes, I have no patience (patients) and that is why I am not a doctor!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miracle Man

Good morning to You Lainy,

It shouldn't take more than a day or two.  But I guess it would depend on the facility and how busy they are.  The first appointment is for your consultation with radiologist Oncologist and Second one for proper calculations and markers.  Sometimes they can do this at same appointment. As far as giving you a date, it don't take a rocket scientist to look at a calendar, now does it? I'd give them a call and ask and just tell them my hubby is getting anxious to start treatment.  I think we all find it hard to maintain patience with the slow pace we are subjected to at times, almost torture.  Give'm a friendly followup call Lainy.  Did you know one of the highest job turnover rates in a hospital/doctor office is the receptionist/ appointment maker.  They take such a beaten sometimes.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Miracle Man

Thanks Jeff. I will give them a call today. I pursue but try not to get on their nerves. Although they get on mine! Maybe they would not changes jobs so much if they got decent pay? By the way I was born and raised in KCMO.  Just had our 50th High School reunion. Now you know my age!  Darn.......

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miracle Man

Also, it takes a little time for them to make the "templates" (I don't know what they're really called-- the lead screens that send the radiation into just the correct area) for a particular patient, so that might be why it's taking some time. But I agree with Jeff, you should call them today before the weekend.

Radiation got me 18 wonderful treatment-free months. I hope it will help your husband too!

Peace, hope, and healing to all!

Re: Miracle Man

Lainy , Congratulations!  I promise not to tell anyone. Ha!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Miracle Man

What do you know? I did get a call this morning and they set us up for Monday for a CT Scan (required) and set up, as they call it. So we are on our way! Never in my life did I think I would welcome the word Radiation! How our values change!! Also never in my life did I ever dream of such strong and caring people as you all are!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miracle Man

Best of luck for the Miracle man and his radiation. And I cant even begin to tell you how my values have changed!

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Miracle Man

Hello everyone, I finally heard from the surgeon, and this is what he says,

"We have tentatively agreed on sirtex or chemoembolization.  We first need to determine whether sirtex can be done if portal vein embolization has been performed. If no, then we will perform chemoembo." 

The right lobe of my liver has some of the blood flow cut off because of portal vein embolization.  This was to cause the left lobe to regenerate, but it didn't. 

I truly don't know what to do or ask anymore.  Has anybody had portal vein embolization?  If it doesn't work, doesn't it seem like they could remove the material that shut down the blood supply and then try sirtex? 

I have read some posts here that chemoembolization might not be beneficial.  Any suggestions that might help me make a decision?  Thank you.

Prayers for you all,
Sophie

Re: Miracle Man

Hi Lainy,

Radiation worked BRILLIANTLY for me. It zapped the tumors so hard that they shrank and didn't grow again for 19 months. I hope it works even better for your Miracle Man!

My best wishes to both of you!

Kristin

Peace, hope, and healing to all!

Re: Miracle Man

Thanks Kristin.  Like they say, from your mouth to Gods ears!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.