jeffg

Dear Rhonda: I am so sorry to hear about your Husband and all he has been going through. He has definitely been fighting a courageous battle. I really don’t know what to say to you except to stay positive and get in touch with a hospice facility and get some advice on how to lesson Bob’s pain and nausea and make him feel more at ease. His oncologist probally already has prescribed something for both but sometimes a change helps a little. Rhonda, I can continue to beat around the bush, but the truth is what you already expect. There is a very few who have beaten this type cancer and those who do usually have recurrence. But! my motto is perserverance, hope, and pray for the best and don’t try doing it alone. I’ve personally have had liver resection (left lobe), gallbladder removed, 3D conformal radiation and just started on my 4th different regimen of chemo 3 days ago. Like Bob my body is at a weakened state and I didn’t have the whipple procedure or required stents as of yet and I will have to think seriously before I even consider it. Rhonda, I don’t want to sound overly negative, but sometimes we have to stop and re-evaluate what is going on and make sure it’s what Bob wants as well. We all hope that the miracle cure is around the corner or something that will slow it down. I’m currently on Oxaliplatin and Xeloda. I’m not sure how it ‘s working but it is causing pain in my liver and joints and nueropathy instantly in fingers and face and can’t touch nothing cold or breath in cold air. I have to microwave my water before drinking. Rhonda, I’ve said it many times and heard it many times; different treatments respond different on everyone so we pray and keep hope as long as we can. Again , I’m so sorry that Bob and you have to endure this monster! My heart felt prayers are coming your way. Please review other experiences and some of the family Blogs on this site. I have found them to be very informative as well as heart breaking but the truth and reality of cholangiocarcinoma shines through. JeffG.

I am loss for words. I am so saddened and my heart aches for the departure of such a great man and of the grief his loving family must endure. With God’s help time will ease the pain. As mortal human beings we will never allow the loving memories of those we love so dearly fade. One of God’s mysterious miracles is given to us all – the miracle of memories of cherished moments – This miracle will allow us to spiritually remain in touch with who we love until reunited again within the Kingdon of God. Only then, will we fully understand why God calls upon us to leave this creation”Earth”, some sooner than others. Stacie, I strongly believe God will give you, Marianne, and the Children the strength to deal with Mark’s departure as he is among the Angels now , truly serving God in other ways and at the same time keeping watchful eyes over you all. Mark may you live in Heavenly Peace. I apologize if this is to much , but I’ve always spoke what I truly feel.

My Prayers of Support to You All !
Jeff Gerrish

Kate : I saw the pics and your Mom appeared in good spirits but definitely can tell she has has been through major surgery. I will be quite blunt and say that you need to make sure your Mom is fully inform of the side effects of chemo and let her make a good sound informed decision of what she wants. By that , I mean does she want quality versus quanity. Also, you need to make sure a support system is in place for her there in Kefellonia. If she decides to go ahead with chemo , she should be staying some place with proper facilities and where someone is available to care for her if needed. You might want to discuss with hospital and let them know her living conditions and see if they can set her up with hospice care. I see your situation of trying to be there for your Mom. I understand the transportation part also, I spent 8 years living in the UK and public transportation was difficult to say the least. Not really Having someone around to help with the children just adds to your difficulties I’m sure. Your best bet is get her Doctor involved and tell it like it is and don’t be afraid to go speak with your local clergy/church; they should be able to help as well. Get Social Services involved and Health care professionals is the best and only information I can think of at this time. If there is other family members around , maybe they can step up with some help as well. Kate be assertive with asking for help as you can’t do it on your own. You’ll go balmy trying. It’s not to early to raise the flag for help. God’s speed Kate; wish there was more I could say to ease your challenge ahead. Hemogenoma what I was told is a surface blood blister that sometimes on the liver mimmickes a tumor but is non malignant. Tell your Mom I envy her … living in a caravan on an island in Greece; I picture as so serene and peaceful. JeffG.

Kate: I’m sorry to hear the news about your Mom. When I was told my CC had returned to my liver, I was so frustrated and angry with the whole world. Then when I was told it had mets to both lungs, the wind was knocked right out of me. No it is not fair but only reality with this awful cancer. I recently had 3D conformal radiation and it knocked the size of my tumor back by 3cm. Depending on the size of your Mom’s, that might be a less evasive way to go and maybe kill the cancer cells; of course only the doctors can evaluate that. I know when mine returned I was prepared for surgery for another resection but after surgeons, radiologist, and oncologist reviewed my scans they thought it was a hemagenoma (sp) and cancelled my surgery. In hind sight I wish they had gone ahead with surgery. Lesion can mean tumor, scare tissue, blood blister but the fact she was previouely diagnosed with cc. would lead all to believe it is recurrence of CC. So I guess I’m saying I got a second opinion from a world renouned surgeon and his colleages and still missed the boat. I would definitely still get another opinion as which direction to take next. You know that a second resection is possible depending age, health, and other medical conditions, and type of resection previously done. Please excuse me as I’m talking in the dark, but just wanted to share what I do know and what can happen. Kate, you can only do your best with this bloody disease. The rest is hope and prayers coupled with self determination and then frequently that’s not enough either. I wish your Mom the best and remember all that frustration and anger comes because we don’t have that magic wand to wave and make things better for those we love so dearly. JeffG.

4-6 weeks after 3D conformal radiation experiencing odor from sweat glands (not to be gross) but from arm pits. I thought I saw something on site about rad slowing or sttopping liver tumor but couldn’t stop the tumors in the lungs. I was wondering if anyone experienced this from chemo or rad and is this possible sign of apoptosis (sp) of cells? Last scan after rad showed tumor shrinkage by 3 cm. and I have no more pain in my liver. Also Has anyone experienced conformal rad to the lungs or is that not heard of? Thanks for any replies. JeffG.

Agnes: My experience would suggest trying a different type of chemo regimen. Due to the fact it has mets tells me it is systemic. I know you probally have heard this before, but different chemo regimens work differently on individuals with cc. I would discuss the options with your Oncologist. I have had operation, 3 different regimens of chemo and 3 weeks of 3D radiation on my liver. I am about to begin a 4th regimen of chemo (Oxaliplatin and xeloda tablets). One thing I have come to understand when my cancer returned and mets and is still lingering, is it’s not my fault and it’s not because I’m not being positive or trying hard enough. It is the CC and it has to be confused with different treatments; chemo, relaxation, diet. Also , as best as possible keep the anxiety and stress levels low. Consider prescription anxiety and sleep aids. In my opinon cc strives on the adrenaline created from stress and anxiety as well as causing your other body organs to go haywire.
Tell your husband to keep his chin up and consider discussing another chemo combination with Oncologist. Many times I have thought about just let nature take it’s course, but I’m just to darn stubborn I guess.

JeffG.
P.S. Agnes, March, 2007 will be 8 years since first diagnosed THERE IS HOPE!

Happy Birthday Rick! Thanks so much for your work on this site. It’s nice to be able to openingly discuss and share. I just turned over another year January 7th. Shooting for January, 2008 now. Thanks again for your super support. I hope what you give will return double fold!
JeffG.