Carol -
I am so sorry to hear that you lost your Charlie.  It has been almost 8 months since I lost Fred and as you said take one day at a time.  I will keep you and your family in my thoughts and prayers.
Colleen

Mary Anne - I have been keeping up with your blog since I joined the board.  I was so sorry to learn that Joe passed away last week.  I know how empty your house feel and how you go to tell him something and suddenly realize that he isn't there.  I hope everything for the wedding goes off without a hitch and you and your family have a very Merry Chirstmas.
Colleen

Carol - I am so sorry to hear about Charlie.  I know its like getting the wind kicked out of you when you realize that there is no further treatment that can be done.  Enjoy every last minute you have with Charlie.  I will keep you and your family in my thoughts and prayers.  Remember to take care of yourself during this time.
Colleen

4

(6 replies, posted in In Remembrance)

I just read that Joe Coburn lost his fight last night 12/17 around 11pm.  Please keep Mary Anne and their children in your thoughts and prayers.
Colleen

5

(10 replies, posted in Introductions!)

Walk - My husband had 4 chemoembolization treatments and tolorated all of them very well.  Of course he was only 37, but he had a day or two of nausea, some mild pain in the liver area and slept the better part of two -three days afterwards.  But the results were good 50% of the tumor killed.  Fred's biggest complaint was having to lay still for a few hours after the treatment.
Colleen

6

(21 replies, posted in Chemotherapy)

Suzanne,
Fred wasn't a candidate for the radioembolization, thats why we went witth the chemoembolization.  His doctor Dr. J.F. Geschwind at Johns Hopkins is one of the world leaders for this treatment, so it wasn't a hard decision for us. Fred didn't present with the typical symptoms either and by the time the tumor was discovered it was almost 10cm x 10cm and wrapped around all the major blood vessles etc. in his liver.  Hopkins told us they considered the embolization treatments a success if it killed 50 - 75% of the tumor and or shrunk the tumor.  We had just about 50% death of the tumor and Fred lived 10 days shy of 18 months from diagnosis, so we considered the treatment a success and felt that without it he wouldn't have made it so long.  As Jeff said, I think you just have to go with your gut, jump in feet frist, try, try and try again.
Colleen

Rachel, your experience with your Dad was very much like my husbands.  Just reading it was like re-living it all over again.  It is very hard, but I keep thinking that he is better now, pain free and most of all cancer free.  After nearly 11 weeks my children just asked the other day for details about how thier Dad died.  I wish I could explain the rattle to them, but at the same time I don't want to scare them.  I wish none of us had to go through this, as it is so hard, but I keep hoping and praying for a cure also so others don't have to experience this pain.  Stay strong and know that there are others out here with the same pain. - Colleen

Jeff - Keep fighting and keep that positive spirit of yours positive.  Keep taking this disease to its limits and then take it to the limits one more time.  You have been such an inspiration for all of us here.  I wish you pain relief and comfort.  I will continue to keep you and your family in my thoughts and prayers.
Colleen

Mary Anne - I continue to keep you and your family in my thoughts.  I hope Joe remains pain free.
Colleen

10

(21 replies, posted in Chemotherapy)

Suzanne - My husband Fred had 4 chemoemboliztion treatments done at Hopkins.  The treatments killed about 50% of his tumor, but didn't shrink it in size any and due to the location of the tumor he was never considered a candiate for surgery.  The side effects really weren't that bad, he was basically out of it for a couple of days, but then he was back to work with no problems.  He did develop an liver abscess after the 4th treatment which is a rare side effect less than 4% from what we were told.  I believe without these treatements he wouldn't have made it as long as he did with this horrible disease.  Unfortunately we lost our battle on September 16.  If you would like more info or have anymore questions, feel free to email me.
Colleen

11

(16 replies, posted in In Remembrance)

Sue - I am so sorry to hear about Ray, please know that you and your girls and grandchildren are in my thoughts and prayers.
Colleen

12

(16 replies, posted in In Remembrance)

Charlene,
I am so very sorry to hear of John's passing.  Unfortunately I was in your shoes just over 2 months ago and I know the pain is more than any of us can ever prepare for.  Know that John will forever live in your heart.  Don't forget to take care of yourself during this difficult time.
Colleen

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(11 replies, posted in In Remembrance)

Fred lost his battle with this horrible disease on Tuesday, September 16.  My girls and I are still in shock and disbelief.  I can't thank everyone on this board for all of the support, chats and responses I have gotten since I joined in May 2007.   - Colleen

Christina - Fred has been on both the patch and oxycontin for two months now, somedays his pain is next to nothing, but most days it is still around a 5 to 7.  We have started to talk about other pain options with our docs, as it seems like it is time to increase or change what he is taking to try to cut the pain down.  For the past week he has had to increase his oxycontin to 120 mg, at least once a day, sometimes twice and has to take oxycodone for break through pain, along with the patch. 

Does Chuck have a lot of bone mets?  We have them basicaly from head to toe, and with every scan they seem to be increasing.  His doc told me the other week that if he didn't have the bone mets, the pain would be minimum, which just makes this whole thing that much worse.
Colleen

Jeff - thanks for the info.  Fred has been getting radiation for a while now as his mets went crazy between April and June in his liver, lungs, lymph and bones.  Right now they are just trying to make him as comfortable as the pain from the bones is unbearable sometimes.  I will ask our oncologist about this drug when we see him next week.
Colleen

My husband has tremors,  but mostly when he is sleeping.  He says he has them sometimes during the day, but is able to control them enough so i don't notice them.  our onclogist said they were most likely from all the pain meds he is on.  Colleen

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(1 replies, posted in Chemotherapy)

Mroudebush - my husband had 4 chemoembolization treatments at Johns Hopkins.  They killed about 50% of his tumor, which was considered successful.  Unfortunately he now has mets to his lungs, bones and lymph nodes, and is fading away everyday.  If you use the search option and search chemoembolization, you will find our story plus others who have had the treatment.
Colleen

Barb - I echo Kris - you are such and inspiration.  Please know that you are in my thoughts and prayers.  Stay strong.  - Colleen

19

(11 replies, posted in Chemotherapy)

I think you are refering to Gemcitabine also called Gemzar.  My husband has had 5 treatments of the drug every other week.  So far he has tolerated it well, but we don't know if it is doing any good or not.  While he has been on it he has had growth of some of his bone lessions, which isn't encouraging.  He is scheduled to have a CT scan on Monday along with tumor marker test.  As for side effects we have only experienced flu like symptoms about 48 - 72 hours after, tiredness and lack of appetite.  If you do a search on this site, you will find tons of refernces about the drug. - Colleen

Lainy - Great News!!  Its nice to read such great news.
Colleen

Ron - I am so very sorry to hear about Tammy.  I have been keeping up with your blog for months now and have lite many candles for Tammy.  Please know that  you and your family are in my thoughts and prayers. 
Colleen

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(38 replies, posted in General Discussion)

Barb - you and your son, continue to be in my thoughts and prayers.  - Colleen

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

Kris - Great News!!!!  I am so happy for you, go drive your husband crazy! - Colleen

My husband Fred has bone mets in his ribs, shoulders, neck, spine, skull, hips, really too many places to count or list.  He had radiation in March and just started radiation on a couple more spots this week.  The pain associated with all these spots is extreme and the radiation only does so much.  He has been taking Oxycontin and Oxycodone and will start on a Fentanyl patch today.  Was wondering what others with bone mets have done to control pain.  Thanks! - Colleen

Susan - I am so sorry about your loss.  My husband has had CC for 14 months now, but seems to be fading more everyday.  He also has Crohn's, which as you know is an ordeal also.  Was wondering if your doctors ever said anything about the CC being a result of having Crohn's.  I have noticed there are quite a few on this site that have had both, yet my husbands doc's say there is no relationship between the two. 
Colleen