NED is our best friend (No Evidence of Disease). Keep up the good work! So happy to hear your news~
These posts DO help those of by giving hope. Wonderful..and keep posting.
Matt…..it is a tough decision. I was right where you are….feeling overwhelmed by the surgery and not up to doing chemo/radiation or a trial ( I had to make a decision about the trial within 5 weeks of surgery). My doctor did not push one way or the other, but my GP leaned toward not doing it. So I am one that did not do the chemo..but I did not have any invasion either. There are people on this site with clean margins who did do the chemo and it still came back. There does not seem to be any reason to why for some it does come back in spite of follow-up treatment and for others it doesn't. It seems to be the nature of this beast. It also took seemingly forever for the incision to heal…months really and that was the most bothersome. I had an incisional hernia which was repaired two years after the initial surgery and it healed quicker.
It really is a tough decision. Others have posted here who did do the follow-up chemo and many are saying it was the right decision.
We are here for you whatever you decide. Hug those children tight! I have 14 and 15 year old girls who were only 10 and 11 when I was diagnosed. I couldn't believe I would not be here for them to grow up.
(I didn't know that MRI was a choice. I always have had CTScans and have wondered about the radiation).
Waiting for tomorrow's news. Please let us know.
Re: My Introduction to the club and trouble finding help for my son (48 replies, posted in Introductions!)
I am so sorry you are having this concern and all the frustration of time elapsing! It all feels so helpless. PC = Politically correct…..but we should all be aware( I believe) of where we might bump up against walls and sharing these can be helpful to others. My first doctor was Andrew Cameron whose father is John Cameron who is presented as the doctor who has done more whipples than anyone else in the world. He certainly is well-known (John that is)..I have had several friends who have gone to him and not found him personable..but as I mentioned before, if he does the trick, forget the bedside manner. I am not sure why I was given Dr. Andrew Cameron at the beginning…a very young guy and really specializing in liver transplant which was never presented as an option. He had never done any surgery for bile duct cancer and therefore would not do anything without the cancer board directive and every time he came back, he said another ERCP…and it always took several weeks to get any news back and then there really was no news ..except not enough tissue to get a definitive answer..etc. So if for some reason you got Dr. Andrew Cameron, my guess is he is not who you should have. On the other hand, you might try Dr. Tim Pawlick. Do you have access to records on line? If not, sign up for them. You can send a message for appointment or consult and so far, I have always gotten an answer from them in 24 hours. There is also a number to call. Request an appointment.
Sorry I can't be of any help about relief for your son right now. But others here who've had more experience will definitely help you.
Sorry to be long-winded. We are keeping you in our prayers.
Re: My Introduction to the club and trouble finding help for my son (48 replies, posted in Introductions!)
Have you tried contacting Dr. Shulick in Colorado? My doctor whom I adore at JH also left this past fall and I felt abandoned! , but before he left, he reassured me that I could always contact him in Texas if the cancer returns. I understand so well what it feels like to have the doctor who saved your life ..leave. We were referred to Dr. Tim Pawlick at JH for continued follow up…he has quite a bio and the nurse practitioner whispered to me that that is the one to go to. He is NOT Dr. Choti who was very warm, caring and an excellent listener but if he is competent, I guess that's what is important. Maybe you were being PC to not mention who is doing the follow-up at JH. If you did not go to Dr. Pawlick you might want to try him as he does have considerable experience and seems well respected in the larger community. Marion may know of him.
Do NOT give up. Call Dr. Shulick for advice or try Dr. Choti who is at U of Texas Hospital in Dallas or any of the other wonderful doctors people will recommend here.
Keep us posted. I know you will hear from others who have much more knowledge than I do. This is an amazing site.
Thinking of you,
PS….I went to someone other than Dr. Choti at JH at first, but after 7 weeks of dallying around with NO progress and no decision, I switched and it made all the difference. Do not hesitate a moment to switch doctors at JH.
PPS…I am just rereading your posting. That was exactly my first experience..two endoscopies, a stent which they removed for the second endoscopy and although I had protested the second endoscopy because I didn't want the stent to be removed and replaced, I was told "a piece of cake." End result…it couldn't be replaced ! Then the same doctor wanted a THIRD endoscopy and a stent put in from the outside. I switched doctors as this was now 7 weeks from my first appointment and I was getting panicked at letting it go/grow so long. When I went to Dr. Choti, he was very professional but reassured me that whoever I chose, it was entirely up to me and to not worry about the other doctor. He operated within 5 days and no further endoscopies SO….it really does depend who you get. Call Dr. Shulick and ask for a referral to one of the other doctors at JH…or who he would recommend as you felt so much confidence in him in the first place.
Wonderful relief! Such good news~
So glad that you are feeling more comfortable. It's great when moving your ankles is a big step:). Continues progress please!!! Keep us posted.
Thanks again. And to add to my good news. The CA19-9 marker came back yesterday at 16.5. Somehow that relieves me even more as in my naïveté perhaps I think it might catch something before the scan does! Maybe not:)
Fantastic news! I had gone to every 6 months and new doctor has it at 4 months. I see from others that after two years they go to once/year! I guess every doctor has their own wishes. But good news an keep
Thank you all for your cheers of support. It is so wonderful to have a group who know the fear and challenges of this disease! Celebrated 49 years of marriage today! On to the big one next year
Porter..Thanks for your post on my site. I tried to access your caring bridge and my poor computer skills didn't get me there. Somewhere I have missed what the results of your surgery were. You mentioned clear margins. Was that your situation? That was for me, too, and I know there is a debate about this and the last I heard, (correct me Marion if I'm wrong here), they are leaning toward doing chemo. I did not have any chemo after my surgery 3 1/2 years ago as my doctor said at that time that the jury was out on the effectiveness. I was not keen on it either (but who is??)So far so good.
I am wondering myself what the studies are for why it comes back for some and not for others? Are there different characteristics? Is it different whether it is extra hepatic or intraheptic or hilar? (sorry if I'm using wrong terms). I had a klatskin tumor which had been growing for quite awhile (Should have been picked up 1 1/2 years before, but masked by the statin I was taking for high cholesterol). My CA-19-9 was 88 at the time of surgery..I have read here of extremely high counts. Is that any indicator of how virulent the tumor is?
I am so happy to hear that you are back in the swing of things with your family. You are remarkable. Let us hear what the future plan is for you.
I have been away from the board and just catching with people. Is there any word on how Porter is doing? Would like to hear the latest leg if her journey as I don't have the Caring Bridge info. Thanks!
Had my CT Scan today at Hopkins. Clear! 41 months! This offsets a lot my sadness that our wonderful Dr. Choti has left Johns Hopkins to head Dept. of Surgery at U of Texas at Dallas. Grateful for
Lisa. That is wonderful
News! We had our surgeries at the same time and both ended up with incisional hernias. I am so happy to hear that you are ready to get that taken care of. With your spirit, you will get through this and move on. You have been an inspiration to me and so
We had our surgeries (first) about the same time. Last summer my CA-19 marker went from the usual 15/16 to 40 and I was panicked. Marian told me at the time it was too soon to tell what it meant. The next test it was 29 and the last two have been back around 15 again. I ask my doctor why it had gone so high and he said sometimes there is no known reason. I read somewhere that heat sometimes caused it and other times contamination. I am praying for you that the answer is one of those.....it is wonderful that the scan is clear!
Congratulations on such good news!
Re: Haven't been here in a while . . . . Update on me. (46 replies, posted in General Discussion)
Dear, dear Shari....what bummer news. We are all there by your side rooting you on. You will do it just as you have done with all the other bumps, carry on
with amazing courage. Your will to live will carry you through. Hug tight to your puppies.
Pat, Glad to see you back and filling us in. You have been giving to others, as always. It does help us keep our minds off our own situations to be involved with giving back or passing it on.
...Scar tissue seems to flare up months/years later. Just when you think all is done, there it is. A friend with pancreatic cancer (4 years later no evidence of disease..NED), had problems with scar tissue blockage and had to have an operation to clear it THREE years after surgery. I have had mild dilation where the surgery was which prompted the radiologist to say he was "mildly concerned." My doctor reassures me it is a result of surgery/scar tissue. Can only hope!
Thanks for updating us.
has there been further posting to find out if Pat is okay? I am hoping that a simple solution was found to the restriction...
Not a diet at all.......just some delicious recipes....I am not a cook..but there are favorites of mine in these books that I repeat over and over and convince myself I am eating healthily. It's such an effort to alter diet habits!!!
You certainly have your entourage of doctors! The only one I went to faithfully, who saved my life, is moving to Texas (why???). He and his wife have no children but he certainly has given life to many, many. I have two friends who go to him also and we say we are going together on a yearly escape to Texas to see him.
I hope this week goes by without a hitch and you are back feeling a great deal better. I am with you on the aging process. I keep thinking this is just a temporary condition and I'll be right back with healthy knees and straight back and no problems at all!
After reading this, I am wondering how today has gone. You are such a support for all, that you deserve all the support you are getting. Reading about the eating, i am wondering if you have a copy of "Beating Cancer One Bite at a Time" and "The Cancer-Fighting Kitchen" both by Rebecca Katz. Amazing recipes and the latter has lots of information about foods for combatting nausea, fatigue, etc. The base of many is a broth she calls "Magic Mineral Broth". I feel healthier just smelling it cooking in the kitchen!
We are all thinking of you and are there in spirit.
Great to hear the good news.....Keep it coming! Kathy
Wonderful! To pull off all that great success and deal with other mundane things like cc, you deserve all the accolades!
Re: My trip to the Naturopath (18 replies, posted in Complementary & Alternative Treatments - CAM)
If you want the name of an herbal apothecary I can steer you to one I believe is very reputable. I have been seeing a nutritionist (with good credentials) who puts in orders to an apothecary in Silver Spring, MD. You could call them. Even though I am close by, they ship to me. I am mainly taking a tincture of turmeric (even Johns Hopkins Magazine published an article this month on the benefits of turmeric as effective treatment for cancer..they are conducting a study). I had to give up the reishi as I got a rash from it. I am also taking ashwanganda and ginseng. I do understand hesitations to start taking anything too "out there" and may have risks to the liver!