1

(4 replies, posted in Members' Cafe)

Great post Kris.  Thanks for putting a bright spot in my day.

Patrice

Good News!!!!  Dave had a paracentesis last week as he had developed fairly significant ascites.   They drained 3 liters of fluid and sent it for pathology and it was negative!!!  We are so relieved. 

He will now be having a combined visit with an interventional radiologist and an ocologist at Mass General about the possibility of having SirSpheres to reduce the size of his largest tumor.

Now...the point I want to pass along is a suggestion that everyone read "The Secret"  It is about the Laws of Attraction and how you can create your reality by how you think. 

I have spent the past week concentrating every thought  on Dave's pathology being negative and his being eligible to have the Sirspheres.  I never let a negative thought slip in.  I made it a mantra " we are one, we are healthy, we are joyous, and we are thankful that our love brings only good things from the universe".   Some may find this silly but after today's results I am becoming a believer in the power of laws of attraction.

I am sending out only positive thoughts to all of you as well.
Patrice

Susan-so sorry about your Mom.  I hope your memories can eventually bring you joy and peace.
Patrice

4

(19 replies, posted in General Discussion)

Deb-the naturopathic doctor gave Dave some L-carnitine a supplement that is supposed to help with fatigue as he has terrible fatigue all the time.  I really push him to keep hydrated too which can make a difference.   They wanted him to try ritalin, but he said no to that.  Dave always says "what good are your friends if you can't use them", so call up and enlist help as sometimes people don't know what to do to help until you tell them.
Patrice

Shalla-I think many folks respond the way your Mom has when they are first diagnosed but even if she continues to feel this way it is so great that she has you in her corner keeping up on everything that is going on.  We'll all send positive thoughts her way for the whipple.
Patrice

Yippee!!!  What a wonderful end to a what was a lousy day.  Dave is having a paracentesis this week as he has developed ascites and they want to see if his cancer has spread to the peritoneum.  Sure hope your good news brings him good luck.  All the best with your up-coming oncologist visit.
Patrice

7

(19 replies, posted in Chemotherapy)

Hey Jeff- anemia is low hemaglobin count.  Hemaglobin carries oxygen in the blood.  Platelets are the factor that help blood to clot and is affected by chemo and also by hyperspleism.  I know you take an herbal concoction but i know there are some that are specific to low platelets.  Usually they rebound as you get further out from the chemo.  Probably none of that helped and you probably knew it already but just wanted to throw in my 2 cents. :-)  Patrice

Hi Deb- my husband Dave was also diagnosed in March 07.  They said he was not a candidate for surgery, but I think now we should have looked for more opinions.  We live on Cape Cod.  He had chemo here on the Cape and then they told him there wasn't much else to do and that chemo was only palliative. 
So, we went to Cancer Treatment Center of America in PA and they are using a different chemo and are now suggesting radiation.   We also have a consult in at MGH to see about microspheres.
I come here most every day for encouragement and this is a wonderfully supportive group.  Hopefully something will eventually shrink Dave's many tumors enough so that he can have surgery.  Best to you.
Patrice

Hi Carol- Dave and I live on Cape Cod in Massachusetts.  We got word from Dr. Kennedy today that he received Dave's films and will look at them today and give us his opinion.  We hang our hope on anything these days. I can't even think about "letting Dave go"  I cry over everything these days.  A Hallmark card is enough to make me blubber if you know what I mean.  I send good thoughts out to the universe for everyone on this site.  Everyone's joy is ours as is everyone's sorrow.  Is Charlie feeling any better?  When will you know about the chemo and the therespheres?   Will you be going to Dr. Kennedy for that?  Keep on keeping on.  Patrice

10

(4 replies, posted in General Discussion)

Hi Carol- Sorry to hear your news.  I hope Charlie can have some chemo to hold things at bay.  Dave's most recent chemo didn't go well. They are suggesting radiation now to try and shrink the tumors and we have also sent his information to Dr. Kennedy at Wake radiation to see if he is a candidate for theraspheres.  He has now developed ascites but they think it may be due to the mitomycin chemo he had.   Hard to tell what to do for all of us.   One doctor says one thing and then another says something else.  Trying to stay positive gets harder everyday.  All the best to you and Charlie.
Patrice

Thanks so much for bringing me up to speed Kate ( + Jeff )  I loved the video of your Mum and her pets.  What wonderful memories.  There was a day when I could have read all these posts and been stoic about it all but those days are gone.  I cry all the time reading other peoples stories.  Thanks to all of you for sharing your joys, memories, and sorrow.  what a wonderful community we have here! Every moment in life is precious and many of your stories have helped me to live in the now all the time.  Patrice

Hi Liz- thanks for your post.  Dave and I never had children but I absolutely know how proud your Mom would be of your accomplishments.  Sounds silly, but I am proud of you!  Keep her spirit forever in your heart and as you succeed in life as a wife, mother (if you choose)and I am certain as a daughter to your Dad.

Patrice

Hi Kate-what is your Mum's name?  I have looked all through your posts but can only find "my Mum" and I would love to connect a face with her but don't know which face to look at.  LOL  Best to you-
Patrice

Do you mean Adenocarcinoma?
Patrice

15

(5 replies, posted in In Remembrance)

Dave and I are at CTCA and I just had a call from Matt Wilson that Val passed this morining.  I have told him of all your wonderful caring messages here and he will get to reading them eventually.  Val was his world and he has plans to go to work at the new CTCA as a driver so that he can give back as he feels it was a blessing to have Val here getting her care here.  In our hearts We surround Matt his children and family with love.
Patrice & Dave

Sad news- we are at CTCA and saw Matt Wilson this morning.  Val is not doing well and they do not think she will be able to sustain much longer.  Matt has not been on-line but asked me to thank you all for your thoughts and prayers.
They are such a nice couple and Val is only 41.  It is very sad and emotional.  We are glad we were here to offer a little support.
Patrice & Dave

17

(3 replies, posted in Announcements)

I would not have made it through this past year without this site.  Thank so much.
Patrice

18

(11 replies, posted in Good News / What's Working)

Oh what wonderful news Charlene.  I am so happy that new treatments are available that can bring us all hope.  hugs to you and John
Patrice & Dave

19

(8 replies, posted in General Discussion)

Hello all-wanted to let y'all know that Val Wilson (matt69scrambler) has been in the hospital for a couple weeks and is having a really hard time with need for chest tube and perhaps feeding tube this week. Matt has not been on-line as he is at her side. Hope all will send your strength and good thoughts to Val and Matt in there struggle.  Matt's Dad who is 83  also is ill having broken his neck.  So this is a rough time for all their family.  Hoping our support will in someway help them.
Patrice

20

(11 replies, posted in General Discussion)

Ditto Charlene.!  I want my Dad....he could fix anything, but I too will settle for all of you as your support has been most helpful during this horrible year.
Patrice

Tanoland-Dave's cancer has only spread to his liver but he has several very large tumors.  Bone scan is clear. His health is at best stable.  Fatigue is his biggest problem.  He sleeps many hours a day but he tries to sleep while I am at work so that we have quality time together in the evenings.  He is on FUDR and Vinblastin right now trying to shrink the liver tumors so that he can have intrahepatic chemo or perhaps sirspheres. I try to keep positive and support Dave in whatever way I can.  I will keep you and your sister in my thoughts.  Patrice

22

(2 replies, posted in In Remembrance)

Dear Michele-My heart goes out to you and yours.  Your Tom was so lucky to have you there by his side. I hope your love will give you strength as surely he would want you to be taking care of yourself.  Please stay in touch with us and accept our support for you in your loss.
Patrice

Hi Lisa-I know at this point you probably feel you can't muster the energy for more fight but fight as much as you can.  I keep thinking of that women on the news lately whom "they" told her tumor was inoperable and some doctor pushed forward and in a very long surgery removed all of her organs, got the tumor, and then put all her organs back in and they showed her on TV going home from the hospital.  Thinking of you and hoping for an outcome that is best for you.  Patrice

Kris-do you have any other symptoms?  How is your appetite? Brown urine? Night sweats?  the order of the symptoms is not as important as the fact that you have symptoms.  Not to say you should panic, but you should follow up with your doctor.

Tanoland-my husband was also seen at Mayo and sent home to have chemo at the local cancer center.  That was a little over a year ago.  He had treatment locally and when that was not working (but they were continuing the same drugs anyway) and now he is being treated at the Cancer Treatment Center of America.  If your sister has a ppo insurance we highly recommend CTCA as their hopeful philosophy work with many modalities to add to longevity and comfort and in many cases a cure.  While we have no false hope, we do have hope.  Patrice