mvb70

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  • in reply to: My Husband and Cholangiocarcinoma #34640
    mvb70
    Spectator

    Margaret,

    I am sorry you and Tom are going through this and I can somewhat relate. My dad finished his chemo in July and we went on vacation in August. We just got my dad’s results from his first MRI since his surgery which was October 14, 2009. The results were not what we wanted to hear. The MRI showed that my dad has Ascites and a subtle enhancement / thickening in his peritoneum. His oncologist pulled me into a room away from my mom and dad and told me he suspects my dad’s cancer has come back. They did a drained his fluid from his stomach and we found out my dad has a bad infection. He was admitted to the hospital and things went down hill quickly from there. The crazy thing is they discharged my dad when his stomach was so swollen that he is having a bit of a hard time breathing. My dad went into the hospital with a tiny bit of fluid where I could barely tell he was swollen and was discharged looking like he was 8 months pregnant. We are trying to get him a room before making him go to the hospital so that he is comfortable when he gets there. He definitely needs to be drained.

    I hate seeing how uncomfortable he is now. He is so swollen he has a hard time sleeping and flips and flops back and forth and moves from one room to the next trying to find some comfort.

    Is radiology doing the procedure to drain Tom? I want to make sure my mom and I are going about the process so that my dad has the best experience possible or at least the least painful and aggravating.

    Best wishes to you and Tom.

    in reply to: My brother, Ned #40589
    mvb70
    Spectator

    Hi Victoria,

    My dad who is 67 had Gemzar infusions for several months. He started out getting Gemzar 1 day a week for 3 weeks on and 1 week off. He completed 1 cycle and had to be admitted to the hospital because he was extremely fatigued and his white blood count was very low. Everyone reacts differently to these drugs so what my dad experienced may not be a good indication of what to expect for your brother. My dad was kind of week before he started the Gemzar because he had major surgery to remove the tumor followed up with 6 weeks of chemo and radiation before he started the Gemzar.

    He spent a couple days in the hospital getting rehydrated and got his white blood cells back up. He had about 10 days with no chemo and started the Gemzar using an every other week approach. He tolerated this much better than 3 weeks on and 1 week off. His side effects were fatigue which always hit him 3 days after the infusion. He had some nausea but he was given drugs which helped the nausea. My dad’s main issue was fatigue. He also got the chills but not sure if that was chemo related. He also got a fever every now and then but again I am not sure that was chemo related.

    Michael

    in reply to: Has Anyone Developed A Rash After Finishing Chemo? #40551
    mvb70
    Spectator

    Kris,

    Thank you for getting back to me. I also Googled Gemzar and rash and found that rash is a quite common side effect for Gemzar.

    Just talked to my dad and he had the following update on his rash. He went to see a dermatologist today and found out that he had a very nasty spider bite which caused the rash. So he is taking medication and hopefully the rash will clear up in a couple days.

    Michael

    in reply to: Question on Resection and Margins #39526
    mvb70
    Spectator

    Thank you Marion and Bob for responding. This site and you are a wonderful support system.

    Bob, thank you for your prayers. I would greatly appreciate more information about yourself. Where was your tumor? Did you have chills after your surgery? Did you have chills during chemo and radiation? Do you still experience chills? My dad gets the chills after dinner. I would like to know more about your experiences. How did you feel after surgery? How did you feel during chemo? How long did it take before you felt good again? My dad is fatigued. How long before you felt like you had enery again? I greatly appreciate any information you provide. Thank you. I hope your recent issues go away. Take care Bob.

    Michael

    mvb70
    Spectator

    Thank you Isisman, Lainy, Kris, and Kate for your feedback.

    in reply to: Hi i am looking for LaineyA #37245
    mvb70
    Spectator

    Hi shonny,

    My thoughts and prayers are with you, your sister, and your families. My dad is battling this disease and my heart goes out to anyone who is also fighting this or a caregiver helping someone fight.

    I did a search using LaineyA as the search subject and found the post below. I am sorry but it looks like LaineyA passed away back in December of 2008. The post below is from her husband.

    My wife Elaine (LaineyA) often visited these discussion boards, so I thought it appropriate to forward a note I wrote for her coworkers:

    It saddens me to report to you the death of my wife Elaine. She passed away late Tuesday afternoon, amonth after her 41st birthday due to complications with cancer. Elaine never contemplated death; her wisdom was to concentrate on putting her life to its greatest purpose. With this in mind, I want to pass on a part of our story.

    Elaine was my high school sweetheart. Now, we have been married for 17 years and have a beautiful daughter, Isabel, 8 years old. The three of us have a blessed life: we loved and enjoyed each other; we took wonderful trips together; we liked living near both of our families; we liked our careers and our coworkers. We have a supportive church family. Isabel likes her school and her friends from Express Cheer and Brownies.

    Nearly two years ago, Elaine was diagnosed with an aggressive and rare cancer; we searched everywhere for the best possible care. All of the cards, flowers, meals and outpouring of help reminded us what we really needed was at home. She never believed that God willed her cancer, and she never gave up.

    Elaine believed in a Heaven. We trust that she is there now.

    With my Warm Regards,
    Chris Allison

    in reply to: Kris’ (devoncat) surgery #36751
    mvb70
    Spectator

    Hans and Kris,

    You are in my thoughts and prayers.

    Michael

    in reply to: Date set for surgery #35868
    mvb70
    Spectator

    Hi Kris,

    I am keeping you in my prayers.

    Michael

    mvb70
    Spectator

    Thank you everyone for responding. This is a wonderful site and I am so thankful to have each one of you praying and sending good thoughts. My dad’s white blood cell count was 400 when he was admitted. I understand this is low. He was extremely weak and he had a fever. His white blood count is now up over 1000 and he is feeling much better after getting antibiotics. He may be able to come home tomorrow if he doesn’t get a fever tonight and his cultures come back fine tomorrow.

    On a positive note, this is his week off from Gemzar. Hopefully he can get some of his strength back before he has to start his second cycle of Gemzar.

    I wish you happiness and better days!

    Michael

    mvb70
    Spectator

    Hi Everyone,

    I would appreciate your input. My dad gets the chills quite frequently and I was wondering if that is common and why it might happen. He doesn’t have a fever but is cold more than he was prior to being diagnosed with CC and his surgery.

    Has anyone experienced the chills? What do the doctors say when you ask about the chills? I read that the chills are quite common but I am hoping to get more of an understanding of why and is there anything to help aside from the obvious covering up and adding layers of clothes?

    Thank you for your help.

    Michael

    mvb70
    Spectator

    Mary,

    Sorry to hear you are feeling under the weather. I hope you feel better soon. Thank you for your response…it made my day to hear that someone had the same treatment my dad will start on Monday and is still going strong 3 plus years after diagnosis.

    My dad just had his surgery to put the port in today and starts chemo and radiation on Monday. Not sure if chemo and radiation was on my dad’s list of things to get for Xmas but I know he wants to live. We will help him get through the treatments.

    Do you have any advice for nutrition? What should my dad eat and what shouldn’t he eat? I’ve read that you can starve cancer but I am not so sure about that bit of information. I read that someone with cancer should stay away from meats, sugars, and anthing that is acidic. I would imagine things like chicken and fish are good.

    What are the supplements you recommend to help my dad keep his immune system strong?

    Thank you Mary! I wish you and your husband the best.

    mvb70
    Spectator
    MsHopeful wrote:
    Hi Michael,
    If you don’t mind, what was your Dad’s biliruben level at the time of surgery? The reason I ask is because the my Dad’s doctors keep putting off surgery waiting for his biliruben levels to come down and frankly my Dad’s getting frustrated.

    Best wishes for your Dad and your family.

    Thank you!

    Hi MsHopeful,

    Sorry for the delay in my response. I had to locate the documents with the Biliruben numbers.

    Here is the detail I have available on my dad’s biliruben levels. Prior to the ERCP and stinting, my dad had a Bili T level of 21.7 on Sep 22. They put the stint in and his levels dropped as follows: 17.9 on Sep 23, 20.2 on Sep 24, 16.5 on Sep 26, 9.1 on Sep 28. So the lowest record I have for Bili T is 9.1 on Sep 28.

    For Bili D, it started at 17.5 on Sep 22 and dropped as follows: 14.0 on Sep 23, 15.7 on Sep 24, 13.2 on Sep 26, and 7.4 on Sep 28. So the lowest record I have for Bili D is 7.4 on Sep 28.

    I believe these numbers continued to drop before my dad had his surgery on October 14. His skin almost returned to the normal non jaundiced color.

    mvb70
    Spectator

    Good luck Gerry…I will keep you in my prayers. Please let me know how you are doing when you are up to it. I wish you a smooth and fast recovery.

    Best wishes,

    Michael

    mvb70
    Spectator
    Lainy wrote:
    Hello to you, MVB and since you have been reading up on us I don’t have to tell you what a wonderful “family” you have now adopted.
    Sounds like your father’s doctors are spot on. I can’t help you with the chemo as my husband had radiation. When he had his endoscopy 4 years ago the dye leaked on his pancreas and literally destroyed it and he too had an infection and dined on chipped ice. He had a Whipple surgery, is now 77 and doing pretty well. The cancer returned last year where his duodenum used to be and we had it zapped with cyber knife. It has now returned again and we are just waiting for a date for a PET Scan but so far the radiologist feels we can again use the cyber knife.
    How wonderful a grandfather your dad must be to adore his munchkins so much and how lucky the grand kids are to have a Grandpa like that.
    You have every right to be scared as this is a real nightmare, but the better news is one just gets used to it, honestly. Glad you did a lot of reading and if you look at the top of the page there is a search button where you can just type in a word and get answers. Please keep us posted and wishing your dad well.
    P.S. We tell newbies not to think about what others have gone through, dates or times. Everyone is different and this is different with everyone!

    Lainy,

    Thank you for the welcome note. It is great that this family exists for people that have to deal with this horrible disease. I hope the cyber knife wipes out your husband’s cancer and the two of you have many more happy healthy years together.

    Best wishes,

    Michael

    mvb70
    Spectator
    devoncat wrote:
    Welcome to the site. We always do our best to help each other. This cancer is a beast but there are some bright spots and some hope.

    I have not had radiation or the type of chemo prescribed for your dad so I cant offer any advice but hopefully someone will be around shortly.

    Best of luck with your dads treatment plan.

    Kris

    Thank you for your welcome note Kris. I wish you many bright spots.

    Thank you,

    Michael

Viewing 15 posts - 1 through 15 (of 15 total)