dianne-n
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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! DianneThanks 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!
Hugs,
DianneHi 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!
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?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!
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!Hi Derin,
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!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!
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.
