Marion....My white counts have been perfectly normal. I still wouldn't know I had F.L. if not for my many scans for C.C. The standard treatment for F.L. is to watch and wait until symptoms present or until lymph nodes get to a certain size, neither of which has happened in my case. My doctors are still discussing my treatment options, but most likely will continue to wait until my next scan, then make the call to either treat with chemo or continue to watch and wait. How old is your daughter and what is the location of her enlarged nodes? Mine were in the abdomen, so not noticeable except by scan. My best to you both! Dianne
Marion...So happy to hear that your daughter is doing well! Yes, I actually had enlarged lymph nodes at the time of my initial surgery for CC, 4.5 years ago. The doctors thought my nodes were maybe reacting to the surgery or to the mesh that I had to have implanted because of an incisional hernia.... and I even had a biopsy of one of the mesenteric nodes in 2011 which did not show any disease. This same node was biopsied last month, this time with a follicular lymphoma diagnosis. The doctors feel that I have probably had the F.L. for many years....interesting that I still wouldn't know that I have it if not for the many scans for CC.
My very best wishes for your daughter! Dianne
Thanks for your replies, and for your interesting article, Gavin. You're right Lainy, I sure didn't expect this! Kris, interesting that your husband had lymphoma and then CC....so I'm not the only one who has had both types of cancer! I saw the local hematologist/oncologist in my MN town who recommends "watch and wait" as did my hematologist at Mayo. I had a phone consult from an oncologist at MD Anderson (a friend of a friend) who thought I should get treated soon based on the size of my lymph nodes. Think I'll wait the 3 months and see what my nodes are doing, then make the decision. The treatment would be 6 months of well-tolerated chemo, no radiation. I've been told that some patients can go many years with no treatment....which sounds good to me!
Hi Matt....I wanted to reply to your post because we sound like we've had very similar paths, with the same doctors!, and I'm 4 1/2 years post resection! My symptoms started right after Thanksgiving dinner in 2009 with severe indigestion. Then I got the itching and finally an MD friend of mine got me to my local doctor who did an ultrasound and MRI and recommended a major cancer center. I went to Mayo in Rochester in Dec. 2009 and saw Dr. Gores and then Dr. Nagorney...both amazing doctors who saved my life. My surgery was Jan. 5 and I chose not to do any adjuvant therapy. I had a few bumps in the road after the surgery but am pretty much fine now...except that the docs kept scratching their heads regarding some enlarging mesenteric and retroperitoneal lymph nodes. I finally had a biopsy of a mesenteric lymph node that revealed I have follicular lymphoma which is much more treatable than CC. I see an oncologist this afternoon to figure out treatment for the F.L. Anyway, I'm wondering who your oncologist is at Mayo. I had Dr. Alberts initially but for some reason that I don't understand he has not been assigned to me the last two times I was at Mayo. (Oh, I take Metamucil every day for diarrhea issues - it helps.) I know this must be very difficult for you with younger kids at home, but it sounds like you have a great attitude. We learn to enjoy and appreciate each and every day!
Greetings to you all! It's been quite a while since I've posted, but have an "interesting" development in my health journey. The GREAT news is that I have been free of CC since I had a surgical resection at Mayo in Rochester in 1/2010...with no chemotherapy or other treatment. However, for the last 3 years the CT and MRI scans have been showing enlarging, and sometimes then decreasing sized, mesenteric and retroperitoneal lymph nodes. I had a biopsy last month (I'd had one in 2011 which revealed only normal lymph tissue) and was given the news that I have follicular lymphoma! This is slow growing and hopefully I will be treated and then live for 12 to 14 years which is the mean survival....I'll take it! I'm guessing this has to be a fairly rare cancer combo! It's been good read some of the posts from people who I used to follow, although difficult to read more of the struggles. It's always uplifting to see the great humor strings that go on in spite of the seriousness of this disease. Stay strong and keep up the good fight!
Thanks to you all for your comments and well wishes! Regarding my AFP...it is 8.7 and it should be under 6. I read that AFP is used to monitor hepatocellular carcinoma but also can be elevated in benign liver disease. My liver does not look "normal" in scans (it is highly vascular), but no mets. I'll just keep following Dr. Albert's orders and hopefully the AFP value will drop. (My liver enzyme levels remain high, and I'm told they probably always will remain high.)
Susie, I read that you went to Mayo for a consult. I'm wondering if that is where you had your AFP done...and if Dr. Alberts was your oncologist?
Re: Survival...Please tell us your latest milestone (144 replies, posted in Good News / What's Working)
Cancer free since my resection at Mayo on January 5, 2010! The only issues I've had since my resection are an incisional hernia that needed to be repaired, a "spot" in my lung (resected and benign), and mesenteric lymphadenopathy (biopsied and also benign). Although the lymph nodes are not getting smaller, they are also not getting larger....so far so good. So nice to read the other good news in this topic!
I went to Mayo clinic a couple weeks ago and had good scans and blood work. (My resection was 1/5/10.) Yay, still cancer free!!! The only concern my oncologist, Dr. Alberts, had was that my alpha fetoprotein was a bit elevated from 6 months ago so I need to repeat that in 3 months. I don't hear much mention of that test and I'm wondering if other cc patients have that done routinely? I'm feeling very blessed and am grateful for every day!
WONDERFUL NEWS! That one year mark is huge! Congratulations! So happy all has gone well for Marina and you can celebrate this milestone!
Such wonderful news for you and your husband, Nancy! Congratulations! Gives us all hope!!!! My Mayo doctor said after 5 years he wouldn't even need to see me anymore (I'm 2 years and 3 months post resection) - now that would be grand! Does Ron feel good....like before his cc journey began?
My very best wishes to you and Ron!
Re: Light at the end of the tunnel so to speak... (14 replies, posted in Good News / What's Working)
I'm going to show your post to my husband who is a bigger fisherman than I.....he'll probably know about gator trout....I don't remember hearing about them. We have a friend who actually catches alligators in the Everglades and my husband thinks he'd like to try that. Not me! Do you go tarpon fishing? We are snow birds so will head back to MN in a couple weeks, then just plain old walleye and northern pike to fish.
Best wishes with your chemo and your CT's. I am glad I got switched to MRI's because I sure didn't enjoy drinking that CT solution! And keep on a'fishing!
Hi Sue....CONGRATULATIONS on your great news of 5 years cancer free!!!!! WooHoo!! It's been 2 years and 3 months since my resection and I am A-OK so far, but I'm wondering if I do make it to 5 years or more what my health will be like. Are you now released from your doctor's care or does he want to continue to monitor you? My Mayo oncologist told me he would probably not need to see me anymore if I make it to 5 years. Do you feel good, or do you still have medical issues related to the cc like infections, inflammation, etc.? And are your scans "normal" or are there still things that cause the doctors to scratch their heads? And your blood work? Sorry for all of the questions!
Best wishes with your fundraiser! Sounds like lots of fun for a very deserving cause. I've been thinking I should be giving back too to the organization - will need to figure that one out.
My best to you!
Thanks to you all for your congratulations! I do feel very fortunate....but at the same time feel terrible for others who are having such difficult times. Thanks PCL1029 for your insight and also the link to IPMNs which I read. My doctors don't seem too concerned about them even though to me they sound ominous. And no, the doctors didn't suggest anything for the probable infectious/inflammatory biliary thickening....in fact I wouldn't have even known about it if I hadn't asked for a copy of the radiologist report which I read after leaving the office.
Off to enjoy the beautiful evening!
I want to share my good news story! 26 months since my extrahepatic cc resection at Mayo, my blood work is great and my MRI shows "no definite return of cc." Yay! I do have "stable prominent lymphadenopathy" which is perplexing to my surgeon and oncologist, but had a benign biopsy 5 months ago so the doctors aren't too concerned. Also have "probable infectious/inflammatory biliary thickening and enhancement". I felt better before I read the radiologist's report, but am happy I don't need to be seen for 6 months. Question: I had a hernia repair with ventral abdominal mesh repair. Have any of you heard of mesh causing lymphadenopathy? A good friend of mine who is an internal medicine physician said she had read some studies stating the mesh can cause enlarged lymph nodes. Also, do any of you have IPMN's in the pancreas, because I have those too.
I feel very fortunate! Bless all of you who are dealing with this awful cancer!
Congratulations on your wonderful news! I read your post with great interest...I was 58 when diagnosed with cc in Dec. of 09, had my resection in Jan. of '10 and just had a good scan at Mayo! Let's plan on having parallel good news for many years to come!
Re: Light at the end of the tunnel so to speak... (14 replies, posted in Good News / What's Working)
Hi Derin, I am a fellow cc patient who also catches speckled trout in FL, not too far from you at Saint James City on Pine Island. Just visited my onc and surgeon at Mayo in MN and specifically asked about alcohol. Dr. Alberts (a great doctor) told me it was ok to have 2 or 3 glasses of wine a week. Whew! Because that's what I've been doing. Now I'm going to go post on the good news board. Congrats on having only one chemo cycle to go!
Again Randi.....So happy for your awesome news!!!!
Cathy, I too had an issue with my lung that required first a biopsy and then surgery to remove the "nodule." When the biopsy came back it was a benign nectrotizing granuloma. Try not to worry too much (easy for me to say)... yours too is probably going to be OK.
Hugs to you both!
I guess there are some problems in having a survivors site, but I sure am happy when I see postings like scargots who is 5 years post resection! Makes my day!
Marions, if you ever need volunteers to work at a symposium in Florida (in the winter) or MN (in the summer), I would be very interested in helping.
Betsy and Sue,
Congratulations to you both!!! I've been reading a few of your older posts and you are definitely inspiring to me! I had my surgery in Jan. 2010 so hit the 2-year mark this month and am also cancer free and feeling good. Actually, today I rode my bike 10 miles and briskly walked for 45 minutes. Thanks for posting your good news....certainly gives me hope!
Big hugs to you both!
Hi Marion, I would be very interested in a section on survivor stories....it could give us all hope, eventhough I suppose it might also be a little discouraging? I think it could help people when they are trying to decide treatment options given them by their doctors. I may have decided to have chemo after my resection if I'd gone to such a site... I am now kind of regretting not having done so. Could it be a new heading under General Forums?
Have you read any posts from 32coupe who was diagnosed in 1996 I think.... an amazing story. (Hi bob if you read this.) Otherwise I'm not sure about CC free members. It would be nice if there was a site to write those success stories.
I will be thinking of you next week and will be hoping for good scan results for you. It's always scary getting those results!
Thanks to you all for your messages!
Kris...my very best wishes to you for a good outcome from your upcoming surgery....and may you be in that 5 year survivor group! I'm planning on being there too!
It's been quite a while since I've posted...I almost feel guilty doing so because I'm doing so well while others are not. But I decided to post a comment to show that there is hope! I had surgery at Mayo in Rochester, MN on 1/5/10 to resect my tumor, which by the way had clean margins. I did not have chemo or radiation because my surgeon felt it would not benefit me and could cause harm. I've gone back to Mayo every 3 to 6 months, and have had a few bumps along the way, but am now mostly feeling like my "old self." I had not seen an oncologist at Mayo, but I requested a referral to Dr. Alberts and saw him 12/11. He assured me that my treatment would not have been different if I'd seen him earlier. I still worry a bit about recurrence, especially before returning to Mayo for my scans and blood work, but I do not let it get in the way of living life. My very best wishes to all of you fighting this horrible illness for yourselves or for loved ones.
It is so great to hear of survivors like you! My onc told me that if the cancer is going to recur it will generally happen in the first 2 - 3 years....so you are past that time frame! Congratulations!
I read with great interest your posts because you seem to be about 2 weeks ahead of me in diagnosis and surgery. My surgery for extrahepatic CC was at Mayo Clinic in MN on Jan. 5, 2010. My margins and lymph nodes were clear and my surgeon said it was not necessary to refer me to an oncologist - and now I'm kind regretting this decision. I have had 2 CT scans since the surgery (July and Oct. - when I had some sharp pains) and neither showed any sign of recurrence. At the advice of Lainy and others on this board I saw an oncologist a couple weeks ago who said he would have talked to me about adjuvant therapy in Jan., but would have let me decide if I wanted it or not. At this time it is not recommended. SOOOOOO....I go back to see my surgeon (who is the main doctor following my care) at Mayo in Jan. and am hoping for continued good news! For the first 8 months or so I think I was kind of in shock and really busy planning my daughter's wedding so didn't get too down about it all, but lately I've had some down days. I think the cruise with family is a GREAT idea!
Nancy: My husband and I were just in Wanaque, NJ for a reception for our daughter's wedding. Lovely area!
So wonderful to "talk" to others fighting this horrible illness!