1

(3 replies, posted in Chemotherapy)

Seamus,
My husband was on the pump of 5FU with a combo of radiation after 6 weeks of Gemzar and Oxlyplatin. At the time he was on the pump and even the chemo they were not treating tumors.  They were using this for "wipe up" of any stray cancer cells.  Everything seemed to work for awhile but unfortunately the cancer returned.  Best of luck to your wife.
Joyce

Hi Charlene,
I am so sorry for the situation you are in.  Reading your posts brings back to the surface memories I am trying to deal with.  My husband died in May at the age of 50 after 18 months of agressive treatment.  I have only one regret and that is that I would have not kept pretending that things were going to be okay.  I spent a lot of time doing that because that is what I thought he wanted to hear.  In my mind I needed to be "forever" the cheerleader.  I wasn't in denial because I was the one researching, questioning, and reading but I wanted to spare my husband all the nasty details.  Although I spent almost every moment with my husband when he went on hospice, I still never talked of him not being here.  I would advise you to take the cues from your husband.  Be whatever he wants you to be, the cheerlearder, in denial, or both depending on the day.  I wish you and your husband the best.  Take care of yourself.
Joyce

Hi Nancy,
Sorry it took so long to get back to you but here are the answers to your questions:  Yes, my husband's cancer returned.  I believe that it was because it had spread to the lymph nodes.  They felt confident that they removed all "visible" cancer at the time of surgery.  My husband's resection was done at the Hospital of the University of Pennsylvania.  His surgeon, James Markman has taken a position at Stanford, I believe.  Best of luck.
Joyce

4

(12 replies, posted in In Remembrance)

Bob's wife,
My heartfelt sympathy to you and your family.  May you find peace in the love and support of others.  My husband, age 51, lost his battle in May.  Keeping extremely busy has been of some help to me.  Falling in bed exhausted gets me through the night.  Knowing our loved ones are no longer suffering brings me peace.  You will find a way to get you through whatever is ahead.  I pray the toughest days are behind you. 
Take care,
Joyce

Hi Nancy,
I am sorry to hear about your friend.  My husband went into surgery to remove what was thought to be a suspicious tumor.  After they opened him up they discovered it to be bile duct cancer with some lymph node involvement.  It was his surgeon's decision to resect his liver, anyway.  I think my husband's age factored into the doctor's decision (50) as well as a healthy right lobe of the liver.  He told us that most surgeons would have closed my husband up once they discovered the spread to the lymph nodes. The surgeon was able to establish clear margins after surgery.  The lymph nodes remained the problem.  We were told it was not a question of "if" the cancer would return but "when" the cancer returned.  But I truly believe this surgery extended the life of my husband.  He was 4 days in the hospital and returned to work a couple of weeks later.  There was abdominal pain that he experienced but it did not hold him back.  Much was just the healing process from the surgery.  For 1 1/2 years he continued to say that he felt some discomfort but he did not complain of pain.  I know how anxious you both must be.  All of us can relate to your fear and worry.  Hope the best for your friend.  Please keep us posted.  Take care.
Joyce

6

(7 replies, posted in In Remembrance)

Andrea,
I am so sorry for your loss.  I also lost my mother.  Just 2 months ago.  And before I had time to grieve for her, I lost my husband to this cancer 12 days later.  I don't think there is ever enough time with your loved one to prepare you for their death.  Your mother sounds like a great worman.  May you find peace in the comfort of your family and friends.
Take care,
Joyce

7

(7 replies, posted in In Remembrance)

It is with great sadness that I post the loss of my husband and best friend, Mike, at the age of 51.  He left us on my daughter's birthday, May 15th.  Mike fought a tough battle and never gave up hope that he could beat this disease.  He was diagnosed in October 2005.  Treatment involved a liver resection, radiation (2 different times), and numerous chemo combinations.  He was in remission for several months.  It was just not meant to be.  Although the last couple weeks of his life were extremely difficult, the majority of the time during treatment he was able to continue to work and enjoy the company of his family and friends.  He spent his last weeks at home surrounded by his family.  Mike also leaves behind three children ages 25, 22, 15 who miss him dearly.  Unfortunately, I join the others in this Remembrance section who are heartbroken to lose someone they love. 
Joyce

8

(10 replies, posted in In Remembrance)

Carolann,
My heart aches for you as you deal with the loss of your mother.  Please know that all on this site share your sadness as another family member succumbs to this disease.  My husband is the same age as your mother and I know the fear and sadness my own children are dealing with.  May you soon find peace with loss. 
Joyce

Thank you all for your kind words.  I know all of you share our pain in one way or another.  This morning my husband will have a G-tube inserted to try to get him some relief. I am praying this does the trick.  I will let you know.  God bless.
Joyce

I sit hear with a heavy heart to report that my husband, age 51, has decided to begin hospice.  He started his battle in October of '05 and has fought valiantly.  His journey started with a liver resection.  He has taken every chemo offered to him as well as two different sessions of radiation without ever missing a day due to complications or low blood counts.  This cancer just won't quit.  It has invaded several parts of his body (liver, lungs, pelvis, abdomen).  If that isn't enough, he can not stop vomiting.  He is getting no fluids or food down.  The vomiting is so intense that he was admitted to the hospital tonight for symptom control.  We can't seem to get him to a comfortable state enough to be with family and friends.  Please pray that this latest stay in the hospital will give him this small break to enjoy some time with those he cares about.  I continue to pray that there will someday be a cure to this disease so no other family suffers the way we all are. 
Thank you all.
Joyce

11

(1 replies, posted in In Remembrance)

Alison,
So sorry for your loss.  I agree that this is a horrible cancer.  Be thankful your mom suffered little.  I wish you peace in the days ahead and joys in the memories you shared together.
Joyce

12

(12 replies, posted in Pain Management)

Jules,
My husband has complained about that "gnawing pain" for months.  He has repeatedly asked if it could be the cancer.  He was told that the pain was probably related from the surgery of his resection 18 months ago and also constipation.  Unfortunately, lastest scans do in fact revel the spreading of his cancer to the abdominal walls.  Within a period of one month he has been hospitalized 3 times for abdominal obstruction, severe vomiting, and dehydration.  With each hospital visit, he had relief from the pain.  Constipation is a major contributor to the pain he suffered and pain medicine appears to be a major contributor to constipation.  As of this week, he has decided he wants to stay home and we have begun hospice.   Talking to your dad's oncologist is a good idea but so is your advice in keeping his bowels regular.
Joyce

13

(12 replies, posted in In Remembrance)

Dear Marion,
My thoughts and prayers are with you in the days and weeks ahead.  I thank you so much for all that you contribute to this website.  Your husband was very lucky to have such a loving and caring family.  It saddens me though each time another family member is added to this list.   I pray that  we will see brighter days ahead with the awful disease. 
Joyce

14

(16 replies, posted in General Discussion)

Severe pain in the neck area is was what brought my husband to the emergency room before his diagnosis.  Upon reading a head, neck, and chest x-ray and CT scan, it revealed a tumor on his liver.  Three months later and after a liver resection, his pain was gone from his neck.  Maybe it was "referred pain".  We were never told that, though.  There was no evidence of mets anywhere else.  That is not the case now.  My husband's recurrrance shows mets to his pelvic area and liver.

15

(10 replies, posted in Chemotherapy)

Hi Peter,
My husband is on his 2nd cycle of Xeloda and Avastin and does not experience sleeplessness.  He does appear to stay up later than usual but is asleep around 11:00 pm (this is late for him).  In fact, quite the opposite is true.   He is having a harder time getting out of bed in the morning.   He is also experiencing some stomach upset but rarely vomits.  This seems to be a lot more tolerant on his body than his last chemo cocktail of Erbitux and Irrinotecan.  Best of luck to you.
Joyce

16

(12 replies, posted in In Remembrance)

Stacie and Rick,
All of us share in your sadness.  Because of Mark, this site became a reality.  He was so lucky to have such wonderful support from his family as you were lucky to have such a brave brother.  God Bless you and comfort you in the days ahead.
Joyce

Thank you, Sara for representing all of us at the GI conference.  Can't wait to read your impressions.  My husband's oncologist is there also; hopefully coming back with some new treatments he is willing to try.  Thanks again.
Joyce

Hi Ron,
Following my husband's resection, he was scanned every 3 months until a recurrance and now he is being scanned every 6-8 weeks.  Best of luck.
Joyce

Happy New Year Melissa,
My husband's cancer was located in the left lobe of his liver. (4cm) and in 3 lymph nodes.  He had the tumer removed before he started any chemo or radiation.  Best of luck to your brother.  It seems that almost everyone is able to tolerate the gemzar.  It's the oxaliplatin that is so rough.  I agree that it takes a tremendous amount of couage to face this daily battle.  I am in awe of my husband's determination.  What a great example he is to our children.
Joyce

Mels,
My husband was on the same regimen with the exception of Avastin.  He was able to complete a 6 month cycle without interruption.  At the end of the 6  months, there was no evidence of the cancer.  He did have neuropathy that increased slightly over time.  He was able to handle it, although it was annoying.  It seemed to come and go at the beginning and then remained more constant once treatment was completed.  5 months since this treatment completed, the neuropathy has just about disappeared although the cancer has reappeared.   He has just started Erbitux and Irrinotecan.  Best of luck to your brother.
Joyce

21

(0 replies, posted in Adverse Reactions & Side Effects)

Does anyone have any suggestions for a severe case of a rash (acne) caused by Erbitux?  My husband has been prescribed a topical antibiotic but it does not seem to be working.  It's painful, red, and swollen.  Also, has anyone had any success with Erbitux?  Thanks for any suggestions.
Joyce

22

(9 replies, posted in General Discussion)

Hi Mary,
My husband had two separate biopsies.  7 core samples were removed.  All samples came back benign.  Thankfully, we took his slides to the University of Pennsylvania Hospital where the liver specialist took them in front of a tumor board.  The doctors felt the tumor was suspicious and we agreed to have it removed.  My husband's tumor turned out to be cholangiocarcinoma.  I would move forward and take the slides to another hospital.  Better safe than sorry.  I still to this day do not know how core samples can be benign and it miss the cancer.  Best of luck.
Joyce

23

(0 replies, posted in General Discussion)

Thought I would post an update of my husband's progress to date.  He had a liver resection last October '05 followed by Oxiliplatin and Gemcitbine then 5 1/2 weeks of radiation and 5-FU.  He finished this treatment in June of '06 with a report of "no evidence of cancer".  At his September scans a few small lesions appeared but his oncologist was "not convinced" that the cancer returned.  6 weeks later (November '06) scans were repeated.  His cancer has recurred.  He has several small lesions in his liver and lesions on both sides of his pelvis.  Although disappointed I don't think we were too suprised.  We left the office 6 weeks ago assuming his break from treatment would soon be over.  He was able to fit three short vacations into the additonal six weeks he was given.  He felt better than he has in 1 1/2 years.  Unfortunately, that turned around on Tuesday after one day of chemo.  Hearing that this chemo was milder than his previous protocol, he believed that he did not need to take his anti-nauseous meds.  His current plan of treatment is Irinotecan (Camptosar) and Erbitux.  He will also receive a bone strengthener in a monthly infusion.  Scans will be repeated in 6 weeks.  I guess it time to draw on all the "inner strength" we can muster to do battle again.

24

(1 replies, posted in General Discussion)

Hi Everyone,
Just an update on my husband.  Just after 4 months of no treatment and no signs of cancer, a bone scan shows mets to pelvis as well as 4 small lesions in the liver.  To say the least this has been very disappointing news.  We have not seen the oncologist yet, this news is from a radiologist report so we are not sure what this means in terms of treatment.  His previous treatment was oxilyplatin and gemcitibine, 5 FU and radiation.  He absolutely dreads the idea of beginning treatment again although I can't believe it will ever be a rough as the first go round.   He still suffers from neuropathy in his hands and feet.   Has anyone had a similar experience with mets to the bone?  He already had radiation to the liver.  Can you max out on the amount of radiation to the body?  Trying to get prepared for what to expect.  Thanks .  Happy Thanksgiving!
Joyce

Your mom does appear to be one of the record-setters!  How lucky for both of you.  Your mom's story is encouraging.  I wish her continued good health as you work through this next scare.  In regards to the back pain, that was my husband's only symptom that something was amiss before his diagnosis.  His pain centered in his back and nothing seemed to alleviate his extreme discomfort.  After months of doctor's treatment he finally had a CT and MRI.  That is when they discovered the tumor.  His eating was not affected, though.  I hope your mom's pain can be controlled.  She will be in our prayers.  Good luck.
Joyce