Hello to everyone,

I have had the pleasure of meeting Marlon already through a different support group and I have read many of the post here too. My father was diagnosed in January with Stage IIIB - primary in right lung causing lung to collapse and effusion to build. His primary physician misdiagnosed him for 3 months - he px'd an inhaler and misread his chest Xray. He had a chest tube for 7 weeks that drained his malignant effusion, however, he was not followed by the correct doctor and he developed an infection from the tube and also his lung became trapped. Needless to say, he, and I are very discouraged by the care he has received and it has made everything harder to deal with. The tube is now out and he is home but he is VERY tired and weak and his outlook is not positive. I hope to find help and hope here and plan to provide the dame to whomever I can. I will say that Marlon has been an inspiration to me and I am going to do everything I can to allow my father to be an inspiration to someone else.

God bless all of you, for your courage and optimism

Lee-Anne

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Father dx'd Jan 03' Stage IIIB adenocarcinoma w/t malignant pleural effusion/trapped lung - 5 radiation treatments - starting chemo 03/19

Hi Lee-Anne.
A heartfelt welcome to you. This IS a wonderful place to find support. Sorry to hear your dad's having a tough go of it; it's bad enough he has to deal with the disease, but doctors "dropping the ball" is a really big pill to swallow. I'm glad to hear he's home. Work at making him rest, and see that he eats well (there are some great cancer related nutrition books available - some in the "Recipes" forum). He will certainly get stronger and have a more positive outlook. So long for now,
David P.

_________________
Left Pneumonectomy 1977.
No chemo, no rad.
Positive attitude, exercise, social responsibility, and hope for the future are all things I believe in which helps me be a stronger person.

Photo of me wearing the 2007 Canadian Cancer Society Cops for Cancer Tour de Rock cycling jersey

LeeAnne, welcome to the message board. Sorry your dad is having complications. My wife had a port-a-cath for her chemo which got a staph infection, and we almost lost her. Tubes in the body are unfortunately prone to getting infected. My wife, Lucie, is fine now and has had her second chemo since starting back (she was without treatment for 2 months while she recovered from the infection). Glad Marlon sent you our way and we look forward to your participation. Best to you and your dad. Don

_________________
72-yr old, married 47 yrs. Wife Lucie diag. 10/02 NSCLC (adeno carcinoma) w. multiple bone mets (skull, rib, upper spine, left hip and right fibula); non-smoker.

Radiation: 10-12/02 (spine, fibula); 03-04/03 (hip); 06/03 (sacrum); 07/04 (rib); 12/04 (skull); 04-05/05 (right fibula - recurrence).

Chemo: (Carboplatin/Taxotere), 02-05/03 - effective in reducing tumors; 07-12/04 (Navelbine) to treat recurrence in other lung, lymph nodes, rib - effective in reducing tumors; 08-12/05 (Navelbine/Gemzar) to treat recurrence in hip sacrum, spine, rib, shoulder, and liver - held everything stable; Alimta 2-4/06 - no effect; Carboplatin/Taxol/Avastin,5-9/06 - effective in reducing tumors.
Zometa monthly for bone strength.

Staph infection, systemic, 12/02 - second port-a-cath installed. Bilateral pneumonia, 08/03. Septic staff infection, congestive heart failure, 09/06 - deceased

I am 11-yr. prostate cancer survivor, Stage II (two bouts). Also 9 yr. heart bypass surgery survivor.

Avatar Pic: Don & Lucie, 02/06

Hi Lee-Ann,

I'm sorry to hear about your dad. I know you will find help, good advice, comfort, and great listeners here at this board.
It's really tough to live with and accept when doctors make mistakes. Believe me I know what I'm talking about. I was misdiagnosed for over 2 years. It doesn't make it any easier to trust the next doctor that comes along. You can trust the people here...they (we) generally tell it like it is.

I sincerely hope and pray that as your dad's health improves, his outlook will become more positive also.

Teet

_________________
Teet

dx:ATYPICAL CARCINOID FEB. 2003 with mets. to mediastinum and liver.
started sandostatin 3 inj. per day 3/20/03
switched to monthly inj. 5/15/03
Misdiagnosed with NSCLC in Dec. 2000
lost both parents to sclc

Welcome Lee-ann,
I know you will find great support and friendship here...there are lots of shoulders to lean on and information here too. Sending prayers for you and your dad.

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Hi again Lee-Anne:

So they finally took the tube out? I'm so very sorry that it progressed to a trapped lung, but don't worry because there is a corrective surgery for that (just find the right doctor) as long as they can get the cancer under control. Because my mom's CT and PET scans were clean and fluid negative for cancer cells, and my mom's relatively young age and no history of smoking, the surgeon determined my mom was a good surgical candidate. She never had any discernable tumor, so to speak. Just make sure to keep the docs on their toes. You mentioned he is very weak, so how are they treating the fluid if they removed the chest tube?

I'm sorry that you and your family have to go thru this. There are at least five other people I have met on this board with malignant pleural effusion, but your dad's case seems to be following the same course my mom's did. They say trapped lung only develops in 10-30% of cases with pleural effusion, but it does happen. You said they found a tumor blocking his airways that caused the collapse. Did they determine that thru a scan? In my mom's case I think it was just the fluid that caused the collapse, but they never did a PET scan or a bronchoscopy or thoracoscopy to rule out airway blockage. The oncologist just told us that there was tumor inside the lung preventing re-expansion. However, the thoracic surgeon said that the underlying lung was very healthy, and thats why the lung re-expanded like it did. I am thinking about filing a lawsuit.

Also, God forbid, but if your dad's first chemo regimen doesn't work, you might want to look into chemosensitivity testing. That's where they take a sample of the tumor and try all the cancer drugs on it to see what will work. It has a 94% accuracy in determining response. Visit rational-t.com.
Also, if you want email me and I can give you the names of some integrative cancer care centers in Canada. I firmly believe that chemo works, but you MUST take steps to protect the body while undergoing it.

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? 07/02: Mom dx'd w/Adenocarcinoma of unknown primary manifesting as malignant pleural effusion(3B) ? 09/02: Complicated by trapped lung. ? 10/02: Switched to Block Medical Center. ? 02/03: PET/CT scans clear.
? 03/03: Trapped lung surgically fixed. 11/03: Recurrance(?) to abdomen

Lee-Anne,
Welcome and thanks for sharing your dad's story with us. It sounds like you are out there supporting him and fighting for him in every way you can. As you already know, Marlon is a good resource for you regarding the course your dad's disease seems to be taking, and the rest of the gang here are invaluable for love and back-up assistance.

_________________
"Pain is temporary. Quitting lasts forever." Lance Armstrong

"Every moment is a breath-taking, transitory experience, never to be repeated again." - Don Juan Matus

Tiny
Age 58 at dx; lifelong non-smoker
12/01 dx NSCLC bronchoalveolar-type adenocarcinoma (BAC), Stage IIA
2/02 Lobectomy RLL; no chemo or rad
6/03 MRI = "empty"
3/05 Bone Scan = negative
2/08 CT = "No Evidence for Metastases or Recurrence"
Enjoyed 6+ years of NED
1/09 CT/PET:Recurrent disease: multiple new nodules in both lungs, mediastinal lymph nodes, and spot on liver.
2/3/09 Bone Scan: Degenerative arthritis (hooray!)
2/4/09 Started Tarceva
~~ picture: Temple of Poseidon, Greece 4/08 ~~

Yes Welcome Lee-Anne!!!

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Dad: Stage IV NSCLC with Met to bones dx 1/06.


4/18/03 Liver Met. and Adrenal Gland BUT lung mass shrunk considerably.


5/17/03 Brain Met.

mouth/throat cancer survivor for over 10 years.
#1 Dad passed away 5/25/03 at 12:55 am

Picture of all, Me (green monster), my sister Kim on big wheels and Sandy and my dad on my bike in June 1981

Thanks so much everyone,

I am leaving Dad alone for a few days as he has received bad news regarding his ability to take chemo at this time. I posted in caregiver and late stage to which many of you replied as well. This is a great place, I hope and pray that I will have an inspirational story to tell about my fathers experience. At the beginning we prayed for miracles...now I pray for small steps, hopefully he will change his mind and choose to fight.

Thanks again, my prayers include all of you

Lee-Anne

Hi Lee-Ann,
I hope when your dad feels up to it , that you've found a GOOD doctor!!! Fire as many as you need to, but get a good one. Maybe someone on this board knows someone not too far away from you. Sending positive vibes your way. JudyB

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DX 10/17/01 (4 days after 60th B'day) NSCLC Stage IIIB* squamous & adenocarcinoma, chemo(carbo & taxol) and radiation for six weeks, surgery removed upper left lobe 2/12/02, 2 more chemos in Apr & May 02.
*Drs misdiagnosed

9/16/03 Neurosurgery removed some of the squamous tumor in spine (grew back from original. Original thoracic surgeon said he got it all. He didn't.
Cyber-Knife in Phoenix finished 11/20/03.

Navelbine and Gemzar for 5 or 6 cycles, beginning Nov 3, 2003.

Photo is with my husband on daughter's wedding day 10/99