October 29, 2008 at 6:46 pm #23328jennMember
I have only posted once. I don’t look spend much time on the computer. I have two kids, and spend most time and energy focused on them. And I tend to get down after reading to much.
I am very interested in the tumor markers, I guess because mine seem so high. You would think that I would be unable to function, but other than some controled pain and a little nausea I feel pretty good. I don’t have the latest markers, but should find them out next week after my visit to the Dr. but these are mine over the summer. (June – 5,000. July – 10,000. August 4 – 17,000. Aug 22 – 28,000) I started a clinical trial in September,so I find out Monday how it is working, or else I will change to do regular chemo. Hopefully this new drug AZD6244 will offer some hope.
JennOctober 27, 2008 at 3:33 am #23327suzannegmMember
Sorry I did not see your post until today.
I am seeing Dr. Kaugh at Emory Winship Cancer Institute. I’m sorry to hear about your father. I know this is very hard for you.
My cancer has not affected my bile ducts yet. I’m working hard with chemo to try to keep that from happening.
Where in Rome is he getting radiation treatments? Isn’t Tallapoosa in west GA? I’m in Canton. Let’s keep comparing notes. I know it would help me.October 26, 2008 at 5:46 pm #23326darlaParticipant
I know it is hard trying to sort it all out. From my experience, the best advice I can give is to make the most of every moment. I wish I had been given the chance to take my own advice, unfortunately in our case it all happened so fast we didn’t know what we were fighting & once we did I was so busy trying to understand what was happening & trying to get answers that I feel so much was left undone & unsaid. I am now left with trying to learning to live with & sort out all of my feelings & regrets. Finding this site & all of the wonderful people here has really been a God send for me. The knowledge & support I have gained is unmeasurable & priceless. Again, I wish all of you good luck & no matter what is to come, know there are people here who care and can help & support you.
DarlaOctober 26, 2008 at 4:20 pm #23325carol58Participant
Karen and Darla, I know what you mean. The word palliative – not what we want to hear. We want a cure! Also, the talk of quantity of life versus quality of life sometimes feels like a death sentence. But we keep fighting.
CarolOctober 26, 2008 at 12:53 pm #23324darlaParticipant
Hi to all,
I really can’t add much to this thread as my experience did not include most of the things all of you are going through, however, I do want to say that I cringed every time I heard the word pallative! I agree with Karen, I would rather have heard curative. You would think they could come up with something better!!!!!! I will be thinking of all of you & praying that tomorrow will bring better news. I too would rather wake up to more positives & less sadness & negatives, but that appears to be the nature of our situations. Atleast we are all here to help, support & encourage each other. Good luck to all of you. You are all in my thoughts & prayers.
DarlaOctober 26, 2008 at 12:09 pm #23323
Lulu….how sad that we have to awake everyday with pain in our hearts for our loved ones. The reason for the letter writing was Rob refused to take chemo for palliative purposes only. We could not find a doctor willing to operate…Rob had indicated he would rather die on the table trying to rid his body of this cancer. I sought alternative methods to operating. The Cyberknife doctors did indicate that their method was only palliative also and obviously they are right. How I wish somebody would use the word curative!
Carol…Thanks so much for the words of support. Please let us know how the SIR-spheres works. I know waiting on insurance approval is nerve wracking. Prayers to Charlie and you.
Prayers to each and everyone.
KarenOctober 26, 2008 at 12:57 am #23322luluuParticipant
Glad to hear from you Karen and glad I did find this site. I wake up every morning hoping it was all a dream and this wan’t happening to my wonderful family.
So happy that some of those damn tumors are dead. Please tell me about his bile duct tumor…did you husband have a resection?
My husband’s whipple was aborted because of two small spots on liver.
My hubby has been doing chemo since mid June…so far not working.
I don’t understand why they won’t try cyberknife on him. I am getting so frustrated because I don’t like the answer.
Karen have you tried some alternative stuff to build his immunity so maybe it will prevent new tumors from poping up? He is so fortunate that he is responding to treatment–now finding a way to keep new ones from appearing. I’ve read a lot about supplements, vitamin c IV therapy, etc…I think it’s worth a try.
Why the letter writing, what were you asking for from the doctors?
Maybe I should write letters to find someone to try cyberknife on him?
You are so right about the wonderful people afflicted with cancer.
I pray everyday that god does not take my husband from me, he is too young. We have so much life to live…..I need him to be here to see our kids graduate from college soon. I need him to grow old with.
I thank god for finding this site, it’s great to be able to talk to people who are unfortunately going through the some thing.
Thanks for listening.October 25, 2008 at 9:12 pm #23321carol58Participant
Karen, great news about the dead tumors. I’m so sorry about the new tumor. Charlie also has numerous tumors in his liver. We were told his tumors are too big for Cyberknife and also wrapped around the bile ducts. I’m glad Rob was able to have Cyberknife. Charlie’s doctors are also presenting his case to the tumor board. We’re always waiting to hear about something, aren’t we? We’re anxiously waiting insurance approval for SIRspheres treatment. The cancer does seem relentless sometimes, doesn’t it? Take care of yourself and keep us posted on the tumor conference.
CarolOctober 25, 2008 at 8:01 pm #23320
Sorry you have had to look and find this site. We are a bit discouraged at present. After intensive research and letter writting to different doctors Rob had Cyberknife treatment in Boston as Beth Isreal Deaconess Hospital in January 2008 treating 3 tumors in the liver. In July of 2008 he was again treated for a new small liver in the tumor and a mets tumor in the spine. We just came back from a follow up scan in Boston and the good news is all treated tumors appear “dead”, no cancer cells showing. The bad news there is a new tumor in the liver. Our doctor has decided to have a tumor conference with other doctors to see what the best course of action is. So I do not have any “positive” news to offer. How I pray that I did. It seems no matter how hard we try to zap off these tumors they just keep developing. I pray for all devastated with cancer. It is such a waste of wonderful people.
KarenOctober 25, 2008 at 3:19 am #23319luluuParticipant
Karen, I also live in New Jersey and am the wife of a cc patient.
How is your husband doing. Can you tell me a little about his treatment, has it helped?
Forgive me for being nosy but I am just trying to get as much info as possible.
We may be changing oncologist to someone who specializes in these types of cancer….not sure it will make a difference, but not happy with current doc.
Do you use the hospitals and docs in NY or did you find someone great in jersey?
LuluOctober 11, 2008 at 6:24 am #23318marionsModerator
Hello DonnaOctober 10, 2008 at 8:12 pm #23317
Sorry you have had to make our acquaintance at this site. My husband was diagnosed a year ago and was told he had only months to live, but thankfully he is still here – so please do not be discouraged. You will find many different stories and suggestions on this wonderful site. Prayers for your Dad and family.
KarenOctober 10, 2008 at 7:39 pm #23316donna-lMember
Hi – I am also a new user to this website. My father was recently diagnoised with bile duct cancer which is considered a very rare cancer. He is 79 years old. He was sent to Piedmont Hospital in Atlanta, GA and seen by Dr. Roshan Shrestha who performed a ERCP test using a new system called a Spyglass Visualization system. We were told that his CA19-9 was 1427 and the tumor is in the common bile duct, it is in the final stage, surgery is not an option, chemo will probably not have any affect, and radiation might. That he should get his affairs in order and hospice would be available when the time comes. I can not imagine what my father felt when we were told this. I know that as his daughter is was very devastating to all who was present.
However, he started radiation treatments yesterday in Rome, GA – will be taking 25 treatments. At the same time he is starting oral chemo treatments using the drug, Xeloda. All this is new to our family and we would appreciate any feedback on this.
We do know that prayer does make a difference.
DonnaOctober 8, 2008 at 11:04 am #23315judybMember
Just adding to the Ca19-9 info. This marker is non specific and can be elevated when there are blockages and abnormal LFTs and is only a guide. When I had very bad blockage it was in the high hundreds and when I was originally diagnosed with gall bladder cancer it was negative. Don’t rely on the marker too much to indicate progress.
My Ca19-9 is sitting around 180 at the moment but fluctuates depending on how blocked I am.
JudyOctober 7, 2008 at 8:34 pm #23314suzannegmMember
Hi Violarob – that’s as good of an explanation as I have been able to find. Thank you. The internet is confusing to me on this issue. I think I will ask to have both AFP and CA19-9 ran, just for good measure, in addition to comparing with the scans over time. Right now my CA19-9 is 134, which seems high but I guess we’ll see over the next few months if that’s high for me or what. Thanks again for the explanation.
- You must be logged in to reply to this topic.