Pancreatic cancer what to expect?

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Pancreatic cancer what to expect?

by SculptorM on Wed Jan 16, 2013 01:41 PM

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My husband was just diagnosed with stage 4 pancreatic cancer. I am his main caregiver. He is scheduled to begin chemo at the end of this month. I know that the prognosis is very bad. I want to know what to expect as the disease progresses.

I lost my brother to bladder cancer in August, but I was only there daily for the last few weeks of his life, when he was in hospice and already unable to get out of bed.

I'm asking so I can do what needs to be done to make my husband's life easier. He wants to stay at home and I agree with that.  Will he need a wheelchair ramp? Shower bars, ect..

Thank you.

RE: Pancreatic cancer what to expect?

by Maria_Ildonete on Fri Jan 18, 2013 03:15 PM

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I have  Pancreatic Cancer. Pancreatic Cancer has a great ramificaio. One can't give you any recomendation, if you don't know what type. I have one very rare. It called Neoendocrine.

It is one of the most rare: It is also called GLUCAGONOMA. It is very slow growing, and I have lived with it for many many years.

 

May God Bless You!

Maria Ildonete Graf

RE: Pancreatic cancer what to expect?

by cheycodysophie on Fri Jan 18, 2013 03:38 PM

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What type of chemo? How old is your husband?

With my husband - he was trying to lose weight (starting in December of 2009) to help control his diabetes and was very successful; however, the weight just continued to come off and he was not doing anything more to cause this weight loss. In addition, his blood sugar spiked to 450-520. Of course, this prompted a trip to the doctor (Cleveland Clinic) – this was in March of 2010 and this is when it all began. The doctor ordered some blood work, an ultrasound and then a CT scan. What they saw was some type of obstruction but it was not diagnosed yet as cancer. The blood work showed that his body was undergoing some type of trauma, but again – nothing conclusive. At this point it was determined that he was to have two procedures – one was an endoscopy and the other was an ERCP. However, he became jaundiced a few days before the procedure so it was determined, on the day of the procedure, to only do the ERCP so that they could determine what was causing the blockage and fix it. Again – not yet conclusive for cancer (although suspect) they did determine his pancreas had atrophied and both the bile duct as well as the pancreatic duct had strictured. At this point, they were able to put two stents in both ducts to help correct the issue with jaundice. 

After talking with various doctors and surgeons, they would need to do a procedure called the whipple to confirm the prognosis and to fix it.  He had his whipple on 8/9/2010. They removed approximately 20% of his pancreas, some lymph nodes, the common bile duct, the pancreatic duct, the gall bladder and only a small part of his stomach and the duodenum.  My husband was 62 years old and came through the 9.5 hour robotic whipple surgery with absolutely no complications. A month after the procedure – he was able to eat most everything he was eating before the procedure, started exercising more, golfing and he went back to work.  Although the entire tumor was resected with negative margins and it had not YET metastasized to other organs, it did metastasize to his lymph nodes. Of the 20 nodes they removed, 9 showed signs of cancer. 

He has been through chemo with gemcitabine. He then went through radiation/chemo combination (radiation daily with chemo 1 day / week for 6 weeks). He was doing pretty well with this up until the last week. He started to experience fatigue, weight loss (just not very hungry), stomach discomfort. We were told this is pretty normal for this treatment. After this, he had a break of about 3 weeks then started another 3 cycles of chemo. He did pretty well with this last 3 cycles (he did experience a pattern of 1 week on – then the 2ndweek he could not get his chemo due to low numbers (white blood cell count too low) but then he proceeded fine for week 2 and 3. He made it through all the “standard treatments” with minimal side effects – for this we are so very thankful. One of the things my husband has to concern himself with is his diabetes. Prior to the cancer, he was Type II diabetic – after the surgery – he become Type I diabetic (called a brittle diabetic) and takes insulin 4 times/day. His blood sugar usually does not go high but does, on occasion, go low – so we have to be very careful. Again – fortunately for my husband – he feels the signs coming on (feels very warm, vision gets distorted) and he is able to adjust by taking some candy, some boost or ensure, milk, etc. – things that will bring his blood sugar back up to par. This is still very scary but again – it has become a part of our life and we adjust – it is SO much better than the alternative. 

We were scheduled to go to Johns Hopkins for a clinical trial on July 6, 2011. However, they needed tests to prove he was still cancer free. He got all the tests done and everything looked great (numbers were good, CA19-9 was 14, he was feeling good, at a good weight) except the CT scan showed that a nodule (in his right lung) that was previously 5 cm had grown to 8 cm and a new 10 cm nodule was also located. We were still pretty confident that it was just an amoeba or a lesion from a past infection but the only way we could determine this for certain was to get a wedge cut of the nodules and have them biopsied. The surgery was successful and there were no real complications (other than soreness from the operation and some itchiness from the anesthesia); however, the nodules were diagnosed as metastasized pancreatic cancer. So a new chemo regimen was started. He started with folfox for 2 treatments then went to folfirinox for 12 treatments – it really started to affect him (did not want to eat, fatigued and nauseous all the time) so he went on folfox for last two treatments – then got a scan. This treatment was no longer working – there was some growth in the lungs – so he is now on GAX (just finished treatment 7) and is doing relatively well with it – except he is losing all of his hair (all over body) but otherwise – doing well. We will go for another scan in February – and take it from there.

This is our new normal – it is very scary at first but considering the alternative – you adjust. We take every day as a new day and a blessing – we plan for vacations and enjoy time with family and friends. We have not stopped living – my husband has cancer but cancer does not have him.

My husband did not feel like he had cancer either – that is why this is such a silent disease – you really don’t know you have it until it starts to progress.

Good luck to you and I pray that your husband gets through the chemo with much success. Try to remember that everyone is different and will react differently to every stage of this disease. There is another blog that I joined with people who have MUCH experience with this cancer – whenever you have a question – everyone is wonderful and will give you their advice or opinion based on their experience. Again – the thing about this cancer is that everyone reacts differently. Some people have surpassed 1 year – 5 years – 10 years – it just all depends on God’s will.   Here is the name web site for Johns Hopkins: http://www.path.jhu.edu/pancreas/ and then in the upper right hand corner of the screen click on Discussion Forum.

My husband is still here -- 28 months past dx -- we are blessed and I pray that you and your husband are blessed as well. 

Make sure your husband drinks LOTS of water during the chemo as dehydration can become an issue.  Also make sure he eats as much as possible -- even if it is nibbling through the day.  He may become nauseaous or maybe not -- but he still needs to eat.  You will find that his taste buds will change -- so things he LOVED at one time -- he may no longer be able to stomach.  But that is okay -- just keep trying to feed him whatever he wants to eat. 

With the chemo infusions--make sure he gets anti-nausea medication and make sure the doc sends you home with anti nausea medications.  Also -- look for signs of depression. Depression can be a part of this disease.  If you see he is getting depressed -- many many people take depression medications - it really helps.

Please feel free to come over to the Hopkins Discussion Forum -- you will find lots of answers there - and you can even do a search on past posts to look for specific topics.

I hope this helped. Never give up hope!!

 

 

 

 

RE: Pancreatic cancer what to expect?

by bestfriendmom on Fri Jan 18, 2013 03:39 PM

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I started writing this and realized that it was turning into a book.  I am the main caregiver for my mom who was diagnosed with stage 4 PC on 12/25/11.  The first thing that I did when the doctors told us what she had was to go online and start reading everthing I could about PC.  What I read general scared the living crap out of me.  What I have lived since then is that every person is different and just because someone has this cancer doesn't mean they are going to die.  There are many people who are living with stage four PC for 5, 10 and 15 years after the diagnos.  A lot depends on the doctors that you find and how hard you and and your husband are willing to fight the cancer.

There is a book out by bob brown who was told by his first doctor that he would be dead in a year.  That was 8 years ago and he is currently cancer free.  I recommend that your read it.  Should the worse happen and your husband not be one of the fortunate ones who makes it.  Hospice will help you to get everything that you need for your home in order to keep him at home.  They are a wonderful organization.  They have assisted me in getting things I need for my mom and she is not anywhere near ready to give up yet. 

Your doctor can put you in touch with your locate hospice center.  They will get you a hospital bed and most imporantly they will provide you the moral support that you need.

my prayers are with you in this long journey that you are starting.  if you every need someone to talk to please contact me.

RE: Pancreatic cancer what to expect?

by Natalja on Fri Jan 18, 2013 03:50 PM

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Good - afternoon! I read your massage about your husband. I`m sorry about him. I found information on internet, that very helpful therapy for this diagnosis also on the late stages is Virotherapy. May be you need to check this information more? I`m sending also link, http://cancervirotherapy.wordpress.com/page/2/

I wish you hope!

RE: Pancreatic cancer what to expect?

by nacina on Sat Jan 19, 2013 12:20 AM

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personally...i like to say i am very sorry about this..It is so sad..I too lost a brother n husband. I will tell u this,, this is just me..I WOULDNT EVEN LET ME HAVE CHEMO - which is only goning to shorten his life n time u two might have..it will make him sicker than he is already.. I would personally take him out to a park-read to him..Keep him warm n full of laughter. U will b surprize by the out come..No dark colors just bright pretty ones..Sunshine..FUNNY MOVIES ONLY.family friends..NO SUGAR OF ANY KIND... keep him chicken soup ..fresh veggies......... make every day a GOOD ONE so there will b another one...

RE: Pancreatic cancer what to expect?

by polarbearkeeper on Mon Jan 21, 2013 08:45 PM

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On Jan 16, 2013 1:41 PM SculptorM wrote:

My husband was just diagnosed with stage 4 pancreatic cancer. I am his main caregiver. He is scheduled to begin chemo at the end of this month. I know that the prognosis is very bad. I want to know what to expect as the disease progresses.

I lost my brother to bladder cancer in August, but I was only there daily for the last few weeks of his life, when he was in hospice and already unable to get out of bed.

I'm asking so I can do what needs to be done to make my husband's life easier. He wants to stay at home and I agree with that.  Will he need a wheelchair ramp? Shower bars, ect..

Thank you.

My husband was diagnosed with stage 4 neuroendocrine pancreatic cancer 12/30/04.  Of course all cancers are different but Wayne lived a pretty normal life for many years.  He just passed on 11/20/12.  He had the Whipple procedure done and started chemo with drugs they don't even use anymore.  Newer and better are available now.  Wayne had to take a few stomach medications and pancreatic enzymes daily.  At Wayne end which was really two weeks long he began having hickups due to the cancer spreading to the liver and putting presure on the diaphram.  This deprived him of sleep and slowing his oxygen intake.  When Wayne's abdomen began to distend due to the cancer that is when we stopped Sutan.  Wayne was brought home by hospice and he was home for 3 days.  He had knowledge that he was home and surrounded by his family 24/7.  Hospice increased his pain medications which is the one thing we wanted controlled.  He stayed with us those three days while his organs began failing one by one.  The only help besides pain control was oxgyen.  On the third night I checked his pupils I got on reaction even though he was still breathing.  I went over turned the O2 off.  I held his hand, told him I loved him and to now go to the light.  He took 3 breaths and his spirit left.  I don't know if any of this will help or if your husband's CA will go the same way.  Get your paperwork in order, appreciate everyday and make sure you say "I Love You" alot.  Teresa

RE: Pancreatic cancer what to expect?

by polarbearkeeper on Mon Jan 21, 2013 08:49 PM

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On Jan 18, 2013 3:15 PM Maria_Ildonete wrote:

I have  Pancreatic Cancer. Pancreatic Cancer has a great ramificaio. One can't give you any recomendation, if you don't know what type. I have one very rare. It called Neoendocrine.

It is one of the most rare: It is also called GLUCAGONOMA. It is very slow growing, and I have lived with it for many many years.

 

May God Bless You!

Maria Ildonete Graf

It sounds like my husband also.  He was diagnoised 12/30/04 with this type of panreatic cancer and just passed on 11/20/12.  We had a lot of time together but still never enough.

RE: Pancreatic cancer what to expect?

by SculptorM on Thu Jan 24, 2013 12:14 AM

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Thank you for the replies. I don't know what type of pancreatic cancer, we haven't met with an oncologist yet. We will when we go over for his first chemo treatment on Monday.  I also don't know what type of chemo they are going to do. My husband who is 60, was diagnosed the first part of January.  He went to our doctor for intense itching. The doctor noticed jaundice, did blood tests and referred us to the hospital. The hospital doctors put in a stent to relieve the bile building up, they did a CT(?) scan, a sonogram and a biopsy. He was in the hospital for a week then was checked out.

Right now he is under the care of our local doctor, who has been the greatest help.

My husband has lost twenty pounds in the last month, looks like he had aged 10 years. He cannot eat hardly anything. Our doctor suggested Ensure, which Thank God, he can drink and keep down. But other then yogurt, he cannot eat more then a bite or two of solid food before he doubles up in pain.

We are trying to take it one day at a time.

RE: Pancreatic cancer what to expect?

by PattyJo on Mon Aug 18, 2014 05:44 PM

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My husband was diagnosed with Stage III PC in March of 2013.  So far, no treatments have prevented it from spreading to the liver.  He is now Stage IV and continues to take chemo of Gemzar and Abaxane.  Radiation didn't work, 5FU didn't work and Gemzar alone didn't work.  They have added Abraxane.  His blood levels are very low and he is very fatigued.  Diahhrea is very bad and he is losing his hair from the Abraxane.  Even though he only has 6 more months at most, he is still working and is far from needing a wheelchair or shower bars.  He is only 63.  He has promised to stop all treatment when he can no longer do the things he loves.  I see you posted over a year ago.  Is your husband still with us?

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