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. (42 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 (15 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!
Randi and Marion....Thank you both so much. Perhaps that is one of my lessons in life.to let go..and move on and be grateful for each day. I was reading through some of the other posts last night and feel ashamed that I even posted anything when people are struggling with such terrible and heart-wrenching situations with such courage. This board is such an incredible source of strength, wisdom and knowledge for all those with cc. Thank you all for your dedication to supporting everyone.
Off now to help my 14 year old get ready for her 5-day backpacking and canoeing trip with her rising 9th grade new and old friends. Bethany is at camp on the Chesapeake Bay with a good friend of hers and about to go to S. Carolina to Myrtle Beach with the family of another friend. We had a week long family reunion at the Delaware shore this summer with all 6 grandchildren for the first time, 3 of our grown kids and spouses and our two youngest daughters. Life IS good.
Yes...Randi has done wonderfully. She is 8 months ahead of me and her doctor feels confident that if it hasn't come back by now, she's clear, as clear as any of us can be! I don't remember seeing anyone posting on here who had clear margins and no lymph node involvement AND no chemo and has gone many years without recurrence. If there is.....could they post again?
Also, Randi/Lainy, do you know if CA-19-9 marker will elevate before the cancer is actually detectable? Is it a more reliable indicator (if it is low) than the scan itself?
and, of course, as I am writing all this, I am telling myself...stop it! Just live and be grateful that three years later I just had a clear scan and CA-19-9 of 16.5.
Need to follow Randi's lead and GET TOO BUSY to let this cancer sidetrack me!
I have been reading on several of the other postings that the trend is toward recommending chemo even for those with clear margins and no lymph node involvement. Am I understanding that correctly? And can someone point toward statistics/studies that are showing that chemo is in fact beneficial in those situations? When I had my surgery in 2010 I was told that there was nothing to definitively show that the chemo was effective in preventing recurrence. It is clear that there are many recurrences in spite of the chemo, but now I'm getting increasingly nervous that perhaps I should have done the chemo. There is no use in rethinking three years ago, but I am definitely worried that I didn't do it in 2010.Could someone steer me toward research that has shown that chemo is definitely helpful and what has steered doctors toward recommending it more.
That is so amazingly WONDERFUL. Crow to the heavens! You deserve to feel absolutely, completely thrilled. I am so happy for you. It is "good news" that gave me hope and kept me going. Know that you are doing that for others.
Daisy...it's a bit of a roller coaster at first...you brought back the memory of my first few days and trying to get into my bed when I first got home (and out of it!)...excruciating, but little by little it gets better. I also had a roller coaster ride with blood pressure going way up and then way down. I just had my 3 year scan and so far so good. I did no chemo as my doctor said that statistics didn't bear out chemo being effective at that point (3 years ago). I also had clear margin. Looking forward to hearing the progress of your mom and so nice to know that Cathy has been with you through this! You are in my thoughts.
So glad to hear the positive results to your treatment. Keep up the good work!
Best to you....Kathy
Wonderful news about the CA-!9-9...Let us know if your dad has gone to Italy. It seems a good thing to do. Visiting family and his home place would be a great boost to his spirits and morale. All the best! These are amazing results in such a short time.
I have read statistics for 3 year survival and 5 year survival. Guess I'm wondering how the statistics go once you've gone 3 years without a recurrence....still hoping that the odds improve with each passing scan....There was someone on last year who had survived 15 years...don't know how many are out there.
I don't know what kind I had! Should find out!
Randi...Wonderful! Would you happen to know of any statistics of recurrence after a period of 3 years? You just posted on my 3 year clear posting, and I just reread that you are now 3 1/2 years out and your doctor says only a couple of more scans. I have never really gotten an emotional handle on the diagnosis so I examine everything from all angles! Wondering about the statistics this far out...Has your doctor said anything about that?
(I know what you mean by scary..about 3 months from scan I start to feel it's time for reassurance!) My next scan is 6 months away....
Lisa...Have you considered going to a nutritionist? I have broken out in different rashes and have been getting some good advice from a nutritionist specializing in herbal remedies for regulating the immune system. I hope during the past 3 weeks since your last post, that you have found some relief. Itching is the worst. I had severe allergic reaction to the chloroprep from the hernia surgery...the itching was almost worse than the surgery itself...could drive a sane person mad. xx00Kathy
After a shaky overnight stay two months ago at the local hospital for a urinary tract infection, where I was treated as a cancer patient instead and was told that something suspicious appeared on my liver, I just had my 3 year scan at Hopkins yesterday and all is well. The only downside of yesterday's appointment at JH was learning that my beloved Dr. Choti is leaving Hopkins and moving to be Chief of Surgery at a hospital in Texas....a great loss for Hopkins and all of us although a great career move for Dr. Choti. He has given hope to so many of us..and will continue to do so...just not in Maryland.
Even though there are long gaps in checking in with all of you, I follow you all and hold everyone in my heart as we go through this journey together.
Lisa, I am so happy to hear this wonderful news. You have really shown us how to fight! Maybe you can relax a bit now???!!
I am checking the messages over a period I missed and notice this one from Sandie. I am wondering how you are doing? I, too, (and many others, too) had a hard time dealing with this diagnosis and the following physical and mental roller coaster. Let us know how you are...it has been 9 months (I'll check to see if there are other threads with you in it), but I am so glad to hear about this scan and to know that things are looking brighter for you. The diagnosis really is an upfront visit with mortality, but there is a lot of hope and support here. I hope you continue to do well......
Jackson...I second all you said. The above people and more have sustained me these past two years. The willingness to share stories, to add information and to be a cheering section have been vital to my ability to go forward with this, quite frankly, frightening disease. The husband of a friend of mine once referred to it as "your predicament." Exactly.
But this website has been a source of comfort and inspiration. I know it has been and will be for many more........Thank you all.......
Hello....I'm not that long..2 1/2 years, but considering I was told by the first doctor that he could give me "palliative care" I'm feeling very grateful at 2 1/2 years. My doctor told me in January I wasn't "out of the woods yet" but these are 2 1/2 cancer free years I didn't think I'd have.
I asked the same question as you two years ago and was told that the success stories aren't "lurking around" on this website! So maybe there are many more out there. Although not cc, I have a friend who just passed her 4 year mark cancer free of pancreatic cancer. Now THERE is a success story. We had the same surgeon. We say it's because of our beloved Dr. Michael Choti. Good luck to you!