Father with Stage IV Mucinous BAC passed away, was given transplant option!

Portal Forums Lung/Thoracic Cancer General Lung/Thoracic Cancer Father with Stage IV Mucinous BAC passed away, was given transplant option!

This topic contains 5 replies, has 5 voices, and was last updated by  laya d. 1 year, 6 months ago.

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March 5, 2013 at 7:30 pm  #1254497    

hopefaith777

Hi Everyone!
I just wanted to take a moment to thank all of you for your support and insightful knowledge throughout our grueling journey with this monstrous disease. You are all a true blessing, and we have always thanked God that this resource was available to us when we needed it, especially during unclear times where your clarification eased our hearts and minds. My dad had been diagnosed with BAC 5 years ago, and a few short years after that was diagnosed with Stage IV mucinous BAC. After a long, hard, and strong fight, he succumbed on Feburary 22nd around all of those that he loved. Myself, my 3 older brothers… we were there for his last breaths. He had began to decline around the Fall of last year… had to stop working, go on oxygen around the clock, developed a life threatening pneumonia that cleared on Christmas day (he was even without oxygen on room air after the infection cleared), however, that was short lived. He began a few weeks after needing oxygen again… more coughing, more mucous. After suffering a pulmonary embolism.. he just couldn’t come back to us. He wound up succumbing to hypercapnia in the end. His kidneys were shutting down, the sclera of his eyes were yellow (his CO2 level was over 100, even after being on Bipap).
Something that I do want to share, however, is that throughout all of this.. his pulmonologist AND oncologist presented us with the option of a lung transplant. My dad was far too weak at this point, unfortunately (wish they would have offered sooner). There was a doctor that had recently been recruited from Loyola in Chicago to Froedtert in Milwaukee, his name is Dr. Bob Love. This man is all over the internet.. he takes on the untakebale. When some are turned away, he will take it on. So, this man that has 100 hour work weeks got our messages, and as my father was on his death bed, himself called my brother. Of course, per my brother’s description of my father’s condition, he was by far too weak… to be continued

March 5, 2013 at 7:36 pm  #1254498    

hopefaith777

to be taken on as a transplant candidate… after all the infections.. his weakened body would never survive. This was correct. However, Dr. Bob Love said that he had previously taken on patients with BAC.. and if my dad were to get over this hump and get stronger, the door was WIDE OPEN to a transplant.

All I know, is that had my father been stronger.. a few months earlier… we would have undertaken this, and Dr. Bob Love would have been our guy. Seriously.. google him. He is amazing. He undertook the first ever double lung/kidney transplant I believe. A completely humble, Christian man… just the man my dad would have loved to take him on. A man after God’s own heart.

Anyhow… just wanted to say thank you to you all again.. Thanks will never be enough. Losing my dad… a man that has dedicated his entire life to God and being a good person, valuing everyone.. is like being kicked in the stomach and not being able to get air. How much he has suffered… it’s heartbreaking. What I do know, is where he is. He used to play trombone professionally and toured with a group called Servant Brass. One of his bandmates wrote us a card and put this quote in it. This quote keeps me going, and helps fill the void and sorrow in my heart.

“When you were whispering, ‘there he goes,’ from the other side of the shore, they were shouting, ‘here he comes!’

:-)

Thank you again.

March 5, 2013 at 8:46 pm  #1254499    

double trouble

what a lovely sentiment. I will be teaching my granddaughter that one. Thank you, for sharing the sweet, soft, comforting stuff.

March 5, 2013 at 8:53 pm  #1254501    

Dr West

Thank you so much for your kind words and for sharing such wonderful thoughts. I hope you are always comforted by his character and the memories he left behind. Please accept my heartfelt condolences.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 6, 2013 at 12:17 pm  #1254517    

marisa93

I’m very sorry for the loss of your father. It’s nice to hear how much you were all helped by GRACE, I feel the same way. This is a wonderful place to be if the need arises. Take care of yourself and my best wishes to you and your family as you heal.

Lisa


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

March 11, 2013 at 9:58 pm  #1254649    

laya d.

I am so very sorry for your loss…and wish you and the rest of your Dad’s loved ones peace. This darn disease is just so devastating. I’m so very sorry.

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

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