My Dad was diagnosed 3 weeks ago......

Nadia

Mae (or is it Jess?!),

What are the side effects of the cancer drugs? Is he in a lot of pain?

I don't know what to say...but my thoughts are with you.

Hang in there,

Nadia

shersart · New User Joined: 21 Aug 2005 Posts: 1

My mom has been sick since Oct 2004. IN March 05 she had a CT scan and saw a surgeon who told us then that she had a lump on her pancreas, and that he wanted to do another scan in 3 mo's and if it was bigger it was cancer and there was nothing he could do, and if not well then it was pancreatitis..I cannot believe I didn't say anything then..I was so in shock...
by the time 2 mos were up , mom was very sick and wanted a second opinion..her GP said, He is the best surgeon, ...and instead moved her second scan up by 10 days...
she then developped jaundice..had stopped eating and drinking and so we took her to emerg....we were told if they admitted her, her Surgeon would drop her as a patient, and then the on call surgeon and he would be in an ethics battle, and then the hospital would probably release her anyway as soon as they found out she had an apt scheduled to see a dr....CRAZY!! we decided to continue on with said surgeon and brought mom home...on the Friday we went to his office to whit the surgeon then stated "you are a little more colourful..now we have something to work with..I am going to send you to the experts!" ( why didn't he do that in MARCH? It was now June....)
off to TO Mom went to meet with the surgeon there...the initial consultation was that he was going to perform the whipple procedure...but wanted to do some clearer scans as the ones from Sudbury, were not very good...ie older equipement..
it was then they realized that it had spread beyond the pancreas UP to the liver ...with a spot on the lung..
so then it was biopsy, and an apt with the oncologist at Princess Margaret to do Symptom relief....as there is no cure....2 mos to 2 yrs depending on how quickly it advances..
now her feet are really swollen and she battles chronic diarrhea. she started taking imodioum which helps...and today she took a codeine for the leg pains..(she is allergic to tylenol...) any advice on how else we can help my mother?
thank you
Sheryl

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Shersart,
I am so sorry for you. My husband and I had a similar problem with his diagnosis. We went to E.R. with abd pain and I insisted they do an CT scan( I am a retired R.N.) After the CT we had one Resident tell us nothhing was on it. 6 hrs later we had another reisdent tell us he saw a shadow on it. But his Dr simpily ordered a G. I. series for a EGD. The GI dr found an irritated gut and put him on crafate and a protonic and dismissed him. I kept after the Dr about his pan. They finally (2weeks later) did a needle biopsy. They told us it was neg for ca. However they took blood for a C-19 and it was evevated so they wanted to do a PET scan, That took another 3 weeks. The PET was pos. and then they wanted to do antoher biopsy but keep putting it off. We finaly went to MAYOS and got a diagnosis in 2 days. So flustrating. But the bottom line is simple( love your mom and spent as much time as you can with her) because this disease is like a rabied dog it happens so quick and time is so short. I wish I had something to say to make this easier for you but I don't there is realy nothing anyone can do. I will say make the best of the time you have and being mad is a waste of time and energy and you will need ally your energy for your mom and you to get through this. I pray for you. This forum will help. I did a lot of reading before I started writing It helps to talk to someone who know what you are going thorough.

Consider yourself huged

Mae /Jess

Mae · Regular Joined: 28 Jul 2005 Posts: 22

NADIA

my name is Jess and my middle name is mae so I answer to both. The side effects are extrem fatigue, neuropathy of hands, feet and airway. He has been real tired and sleeps most of the time. However he still has a great since if humor. We seem to have a lot of company but most of the time this is good it makes him happy even if it wears him out an I am learning to say he needs to take a nap now. Other than that we are moving on as normaly as we can. Good family and friends are a god send altho I do get tired of people asking what can we do because their is nothing, nothing anyone can do now. I have good days and bad along with him and get so-oooo tired. I know its not physical tiredness but emotional.
wish this fourm had a spell check

Mae/Jess

Nadia

Hi Mae,

My dad was hospitalized last Thursday and on Sunday he was transferred to the "4th floor"...palliative floor. Dr's say he has a few days to a couple of weeks. He sleeps 99% of the time...only opens his eyes when we call out to him. Doesn't eat much. Awful to say, but I pray that God takes him ASAP...I can't bear to see him suffer any longer.

All my best,

Nadia

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Nadia

I am so sorry. I will keep you and your family in my thoughts and prayers.
know that your dad loved you and I am sure he knows how much he is loved.
Continue to talk to him and tell him how much you love him to the very last, he will hear you even if he cannot let you know. Your dad will live in your heart for the rest of your life. And remember we change when we pass we never really die, we cross into a different relm. Like God he will be with you.

Consider yourself Huged
Love Mae

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Nadia

I just want you to know you are in my thoughts. I know this is a very difficult time in your life. Know we are here for you. Let us know how you are.
Mae

Nadia

Hi,

Dad's not eating, barely drinks 1/2 cup of water/juice a day, when not sleeping is moaning, doesn't recognize my mother...calls her by his sister's name, on morphine every 4 hrs with breakthru, we don't know how much longer he has...doctor's surprised he's still alive. I'll let you know...

Nadia

Lana8

God be with you and yours during this trying time. Your family is in my prayers. Lana

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Nadia,

Thanks for the reply. I pray for strength to you and your family.
God be with you now.

Hugs Mae

Nadia

Hi Everyone,

Well, bad news...dad passed away Friday Sept. 9th...good news...he's not suffering anymore.

Thank you all for your thoughts and prayers the last couple of months. He was taken away after 76 days.

I'll be checking in from time to time.

Love,

Nadia

Mae · Regular Joined: 28 Jul 2005 Posts: 22

Nadia,
just a short note to let you know we are all thinking of you. I know how difficult this time is for you and your mom even though there is some relief to see your dad at rest. Peace be with you.

my husband started the new chemo Xleoda and ocyciplantin(spelling?) four weeks ago and he developed a plural effussion that we have had to contind with the Dr.s finaly put in a chest tube so I can drain at home this helps his breathing a lot. But this new chemo is so hard on him. However, today the Dr gave us some good news HIS TUMOR MARKERS ARE DOWN 50% this is great if it continues this way. Thats after only one treatment. Gives me hope for more time.

Love
Mae

Kim

Firstly, love and blessings to all of you.

Hello - my name is Kim and I live in Cape Town - South Africa.
My father was diagnosed 2 years ago with pancreatic cancer. We were told that as it had spread to the lymph nodes, operating was out of the question. The doctor also dissuaded us from taking my dad for chemo or radiotherapy. He has pain, lots more than he tells us I'm sure - but he is still going strong. The doctors originally gave him 6 months, and we have been blessed with an extra year and a half so far. We recently found out that the cancer has now spread to his liver, but he is still able to look after himself and is still not taking morphine. After reading a lot of people's stories and also talking to people around me, it seems that my dad is doing well considering. Is there a chance that having chemo hastens the disease?

Thanks for 'listening' and I hope to make contact with some of you.

Kim

nycgirl · New User Joined: 12 Nov 2005 Posts: 7

My 65 y.o dad, too, has pancreatic cancer. Reading your stories I realized how individual and unpredictable this disease is.

Regarding Kim's question about chemo. It is highly individual what the doctors and patients decide based on the symptoms and progress of the disease. Your dad has been alive for 2 years---it's wonderful; most plp are not as lucky.

In my dad's case the oncologist, who is also my parents' close friend, with nearly 40 years of practice advised us against the chemo, at least for now. My dad got pancreatitis in March of 2005 and after all sorts of tests his tumor markers showed 167 but cat scan and MRI didn't show anything definite. He was sent for a biopsy however, since he overcame this illness fast he got busy with his work and life and ignored it. He went on another 5 months till he came down with jaundice in Aug 05. He was taken to the hospital and got a stent inserted into his bile duct. CT-scan showed a tumor on the outside of the head of the pancreas. He developed diabetes too. Although he had a healthy apetite and no pain he lost 26 kgs within a month. The surgeons said that any kind of operation was out of the question in his state and they had to wait till the jaundice went away. After 2 months it cleared , the sugar went back to normal and his overall tests were very good but his tumor markers jumped to 2550. Since his body was extremely weakened and the cancer advanced the oncologist decided not to torture him with chemo and see how he's progressing with support drugs like Kreon2500 and others. We also decided not to fully inform him about the grim perspective and keep him optimistic. Within a month he started eating like crazy, rarely feeling mild pain, gained 5 kgs and went back to his "normal" life. I think that deep down he knows how serious it is but as long as he feels good he manages to keep himself and his mind occupied and it has a positive effect on his body. The only thing that annoys him is the numbness in his feet which somewhat impaires his walking. Nonetheless he drives his car and takes walks. They will do MRI of his spine to see what's going on plus the monthly check up and blood work.

Now we are facing the same question---should we really consider chemo in such situation since it's a known fact it does little for the tumor and gives nasty side effects in most cases. The doctor says the chemo may do the opposite and make him suffer immediately and even shorten his life; it is really up to the strenght of the organism how long he'll keep on going with or without the chemo. Meantime for now my dad's overall health has been steadily improving. A friend of my mom's was in a very similar situation----the doctors gave him 4-6 months to live, he declined the chemo option and he's been living for 3 years now with relatively minor discomforts.

The surgeons say if he eventually gets another blockage they will perform a bypass. In 2 weeks he's due for the check up to see if the markers are increasing or if they stabilized and how he's doing physically.

Thanks for sharing your stories. My heart goes to those of you who lost your beloved.

Mae · Regular Joined: 28 Jul 2005 Posts: 22

I just want to say how much this forum has helped with this terrible time.

my husband passed Jan 4th, 2006, three days after his birthday. He made it through the holidays (which was important to him), then a few days after christmas he statred going down we went into the hospital for resp distress his chest tube pluged up, we were there for four days then home a day he got very confused and could not walk or stand so we went back into the hosp new years eve. The dr.s said liver was not working well so we spent his birthday (jan 1st in hosp) also my mother died on Jan 1st from a stroke. We came home on Jan 3rd with Hospice an he died on the 4th at home with all his family and close friends around him. He was so loved. I think he set a goal to get through the holidays. He is at rest now no more suffering. To all of you going through this horriable illness god bless you. I am so sad that he is gone and yet also glad because he was tired of hurting.

God be with you

Mae

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