Daughter looking for help & hope

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Daughter looking for help & hope

by Mattox84 on Mon Dec 10, 2012 07:09 AM

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I’m sad to say that I’m new to the cancer world. My dad (56) was recently diagnosed with stage 4 Pancreatic cancer, that’s spread to his liver. He’s also a type 2 diabetic. He’s on his second round of a really strong mix of 3 different kinds of chemo drugs. He goes every other week for 16 weeks for 5-6 hours & then has a pump at home for another 48 hours. He’s having a really hard time with the chemo & the side effects. He’s also seems depressed & not in good spirits because of the prognosis. Just looking for others who may have some advice, words of encouragement or support. I feel like nothing I do seems to help...I just want my dad back & happy & healthy!! Much love & thanks to you all!

RE: Daughter looking for help & hope

by maxxschiken on Mon Dec 10, 2012 08:19 AM

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Here is some HOPE for you:

At the age of 57 my wife of 33 years was diagnosed in July 2011 with inoperable stage 4 pc, 5cm tumor on the body of the pancreas and 2 spots on her liver measuring less than 1cm each. CA19-9 numbers at diagnosis were at 21,000+ and her oncologist at UCSF was brutally honest and told us 3-4 months without any therapy and possibly an additional 2 months with therapy but 6 months max. He gave us several treatment options including 2 clinical trials and folfirinox. Because of her age being under 71 and having no prior heart conditions other than being diagnosed with Type 2 diabetes in 2006 at which time she began taking 850mg of Metformin 2x daily suggested she would be a great candidate for Folfirinox. She began to diet and exercise as a means to control this aspect of her disease but even having gone through 5 years of cardiovascular, strength endurance and weight lift training 5-6x per week an average of 2 hours per day she still needed the Metformin throughout those years to keep her blood sugars in check.

She began Folfirinox in August 2011 and my wife had a very difficult first cycle of Folfirinox, so bad she too wondered if moving forward with additional treatments was worth it. Her choice was to continue treatments and each treatment after the first became easier to manage with only mild side effects such as sensitivity to anything cold and the change in her taste buds making even water taste bitter. Most of the nausea and vomitting were non-existent with the administration of EMEND (aprepitant) and ATROPINE during the first 4 hour infusion. She started losing some not all of her hair after 3 months of chemo and gradually losing weight until she went from 125 pounds down to 90 pounds.

She ended up tolerating 9.5 cycles or 19 treatments of Folfirinox with little to no changes to her white blood counts from August 2011 through June 2012. After 4 months of chemo, spots on liver disappeared, 5cm tumor reduced to 4mm. By June of this year, CTscan revealed her liver remained clear and 4mm tumor became a scar tissue. NO MORE CHEMO as of June only the Metformin which she was now taking 3x a day to manage her diabetes and by September her last CTscan was better than the prior with no evidence of progressive metastatic disease or tumor recurrence. Her hair has grown back and she is not back to her normal weight of 125 pounds. Every two week blood draws remain stable and another CTscan is scheduled for later today.

The key will be in your Dad's ability to tolerate treatments.  Provide for him a strong support system and keep encouraging him to fight this battle and tell him about other's like my wife who responded well to the point of remission.  Doctors can deliver the diagnosis and prognosis but they ultimately ARE NOT IN CHARGE OF IT.  Even our healthcare professionals know in many situations it's beyond their control.  They can not tell you how long a person has to live.  Keep in touch.  Send me private messages here if you wish.  I would like to offer whatever information I can offer coming from the standpoint of a caregiver and I can also somewhat speak for my wife who is now approaching 1.5 years in this journey.  God bless your Dad and your family!

RE: Daughter looking for help & hope

by oliveF on Mon Dec 10, 2012 10:34 AM

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Hi,

I have been diagnosed the same back in may, I am 53 (I ahve also 2 sons and one daughter) , living in France ,

 I have been through 9 session of folfirinox ( the same chemo than your father ) , using Emend during the 3 days of Chemo and also a session of acupunture weekly helped me not to suffer from nausea and not losing appetite, it stopped the tumor growth , but no real shrinkage yet

I am now currently having radiotherapy for 6 weeks

still living normal life, good food , sports etc...

hope this helps

Olivier

RE: Daughter looking for help & hope

by sheann on Mon Dec 10, 2012 12:54 PM

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On Dec 10, 2012 10:34 AM oliveF wrote:

Hi,

I have been diagnosed the same back in may, I am 53 (I ahve also 2 sons and one daughter) , living in France ,

 I have been through 9 session of folfirinox ( the same chemo than your father ) , using Emend during the 3 days of Chemo and also a session of acupunture weekly helped me not to suffer from nausea and not losing appetite, it stopped the tumor growth , but no real shrinkage yet

I am now currently having radiotherapy for 6 weeks

still living normal life, good food , sports etc...

hope this helps

Olivier

Hello,

Folfirinox was hard on me for the first few months then the side effects got easier 16 sessions with a 30% shrinkage, since June off chemo and getting scans every three months which show every thing stable next ct scan January. inoperable with mets to the liver & nodes.

Hope all goes well for your Dad and that he is able to tolerate the treatment with good results.

I do aqua fitness 3 times a week which includes ten laps in the pool, gained back the weight I lost.

Blessings Sheann

RE: Daughter looking for help & hope

by bestfriendmom on Mon Dec 17, 2012 04:26 PM

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I am also the care taker of a parent with PC.  My mom was diagnosed with stage 3 PC on 12/25/11.  She was able to have th whipple procedure on 1/19/12.  She was told she was NED in August of 2012 and we thouht we were going to have a couple of years to enjoy life.  In October of this year, three month after she was told that the cancer was in remission, she had another P-Scan and the cancer had metastactis to her liver.  She is now undergoing the same treatment as your dad.  She was very depressed when she was first diagnoised and I meet with her doctor and they put her on mediation for depress and anixiety.  Since then she has been much better. 

I don't know that you will every get your dad back.   They best thing that you can do for him is be as positive around him as possible.  It will be hard but it is important that you remain positive for his sake. 

When it gets to much for you to handle remember that you have a gret group of people here that are going through the exact something that  you are and we are here to help you through this.  If you feel like you really connected with someone you can select that person as a friend and sent messages privately to them.

You are in my prayers.

RE: Daughter looking for help & hope

by MiracleMarty on Fri Dec 21, 2012 03:36 AM

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I have stage 4B pancreatic cancer.  I am doing great my cancer markers are just a little above normal and when I started this journey my cancer markers were in the 3000.  It will be two years in Feb since I became sick.  I started out with three strong chemos and then they switched me to a pill form of Chemo called Xeloda.  I take 2 pills in the morning and two pills at night.  I take them four weeks on then a week off.  I am doing great and I know he can too.  Feel free to ask me anything.  God Bless You 

RE: Daughter looking for help & hope

by Kjohnchas on Fri Feb 22, 2013 12:53 AM

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I read alot about different treatments. My husband is on Etoposide andCisplatin . Has any of you heard of these.he receives this for 3 days every 21 days. 2weeks ago he was in hospital for 6 days with fever infection and bad counts but came out on top and received another treatment this week. Kathy
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