Wonderful relief! Such good news~
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!
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.