NanaL

Just wanted to provide an update on NanaL (Sharon). Her husband says she's gone downhill the last month or so. She is bed ridden and they are keeping her as comfortable as they can. Sharon has been and incredible source of inspiration to me over the last couple of years and I'm so proud to call her friend. I know that many of you feel the same way. She is always caring, supportive and has just the right words to say. I will keep you posted.

Thanks for supporting others by offering advice and positive wishes! It does make a difference for them to see that other people have been there and are doing OK.
Greg

Hello NanaL, I am 54 and have mets to lungs, all lobes. Original cancer of the appendix in 2004. I am curious as to the size of your nodules. My largest nodules are 8mm and 9mm. I feel like these should be considered very small. I have had growth within the last 6 months. I am on 1500 mg of xeloda 2x a day, one week on and one week off. They had to stop the Avastin I was taking because of bowel obstructions. This treatment has helped to lower my CEA and is easier for me to manage. I hope you are feeling well and getting positive results. My next scan is in March.

Thank you for sharing.

Julie

Wow you have been doing this about as long as me , I also had a reaction to urbratux and foxfire it put a bad rash like acne on my face we stop chemo and now the chemo isn't working but my family won't agree for me to stop I need them to give me the ok .I have hinted but with no answer ,they say it will get better mom it will be ok . So please tell me how it went with you on your Dr app

Thanks for describing your experience with Folfiri. I'm supposed to start it soon, and I'm concerned about the side effects.

Hi NanaL, how are you doing? How is the trial going? Hope you have a wonderful weekend.

Hi...I'm just curious, what is TAS 102. My cancer is mets to lungs and mass on adrenal glands.... I am on Stivarga pills and now, thanks to Foundation One testing the genetic makeup of my cancer, the doctor added Herceptin infusion every three weeks. As far as I know I'm the guinea pig for this combo. So far, things seem to be going well on these medications and the side effects are very manageable. However, I am curious about other medication options if these don't work. I suppose it's because I feel too good to be this sick and I plan on staying that way so want as much information as possible to stay ahead of this as much as I can. ;-) I would really appreciate any information. Have a great rest is f your weekend. Sue

Hi NanaL, I haven't received your email yet, but wanted to give you an update. I am at the end of my first week off of the TAS 102. Side effects have really hit me the past two days. Bad nausea and fatigue. I have thrush too. They are adding a new med for nausea besides the Zofran today. I hope you are feeling well and have a great weekend!

Hi NanaL, I just read your post that you are taking TAS 102. I just started it at the end of June through the University of Chicago. If you would ever want to compare notes about how things are going, that would be great. I hope things are going well for you. I think my first scan on the TAS 102 will be near the end of August. Hoping and praying that it works well for both of us! Pam (WISmom)

I've read your experiences journey and most break my heart, but good to know you are hanging in there and have beautiful additions to your family. Take care and God bless.

Hi NanaL; yes that would be great to connect offline. I'm still trying to process the fact that I have stage 3 anal cancer. I suppose this is the new normal. I hope to hear from you. Jocelyn

Thanks NanaL I meant to post to your wall and ended up posting a comment

Thanks for your sweet reply. I hope things get better for you as well and may god bestow his miracles on all of us here. Best of luck .

You had a great idea about calling the radiation oncologist's office. I was just getting ready to do that then decided to look at the medical oncologist's website. To my chagrin, I had copied an 8 instead of a 9 from my husband's note so never was dialing the correct phone number. My bad and the kids say around here. I now have appointments with both the medical and radiation oncologists. The only problem is they're about 30 miles away. I'm thinking that maybe I'll change to another medical group that's closer after my surgery and first round of radiation/chemo. I really appreciate hearing from you. It boosts my spirits.

Thanks so much for your encouragement and support, Nana. I had a CT scan on Monday and am scheduled for a rectal sonogram (or something like that) on the 18th. I also have an appt. with the radiation oncologist. However, I can't get in touch with the medical oncologist. If I can't reach him tomorrow morning, my husband and I are driving to his office (30 miles away). This whole process is very frustrating, but I'm still upbeat. Thanks again for writing to me. It means a lot.

Hi NanaL. How are you? Just had my 4th round of chemo with the Vectibix. I've only developed a slight rash on my face and neck. Did get the dry skin on my face and arms. For the first two infusions the nausea was awful. Got Oncologist to add anti-nausea pre-med which helped. Every now and then I get itchy but it's not to bad.

How are you doing? Its nice to see your post and see your positive responses. All of you give me so much hope and encouragement. God bless you

Hi NanaL , thanks. I will keep u posted. Best wishes for u as well.

Hi NanL. Hope u are doing well . I was just like u diagnosed 4 years ago and still on antibody treatment every 3 weeks things have been tough most of last month because i was in such pain .but always hope for the best to come.

Hi NanaL! What chemo are you currently on? I am currently on CPT-11 and Avastin.

You have been through so much. I pray you continue to find things in life that comfort you and give you strength.

Hi Sharon ~ just thinking of you. How's the new treatment treating you? I just started my 4th cycle of Folfiri & I've been feeling lousy everyday. Just as I'm starting to feel ok, I get my next infusion tomorrow. Sending you positive thoughts & prayers :-)

NanaL, yes I am treated at Siteman Cancer Center at Barnes Jewish Hospital in St.Louis by Dr. Brian Van Tine. I currently am on a clinical study so I travel down there once a month.

Oops- forgot to ask what treatment you are doing?

Hi - thank you for sharing your experience. I was diagnosed in Dec. 2011 with about 15 tumors in my liver so I went through Folfox for about 6 months and then had a Y90 radiation treatment in my liver which appears to have been very successful. I continued with leucoveron and 5FU for quite while longer but last July went to Xeloda (oral chemo) - it's been great! my tumor marker (CEA) went from 1500 when I started to now just .5 or undetectable for the past year. I take Xeloda 2 weeks on 1 week off - it sucks to take meds that much but it's been very effective and the side effects are almost nothing - I'm starting to get the hand/foot syndrome but it's manageable so far. It appears I am developing portal hypertension as a result of scarring in my liver so I am having an endoscopy this morning to look at my esophagus and they are monitoring a very small amount of fluid in my belly. Hoping that doesn't progress! I enjoy life to the fullest and have 3 wonderful kids - my middle daughter just graduated from high school and our son turned 13 so lots of big milestones around here. I'm off to Vegas tonight with a bunch of friends and looking forward to that!

I hope you continue to do well as well and thanks for posting!

Hi NanaL, just wanted to drop by and wish you many many blessings this New Year. You've been in my thoughts and I hope you are doing well. Hoping you can check in with us one of these days. Would love to hear from you. Sending tons and tons of hugs your way.

Wonderful news! So much for you to celebrate!

What a great day! Its rare to have one thing to celebrate - you must have been grinning ear to ear. Sorry I'm posting this so late. I ended up back in the hospital & have been miserable since the surgery. 8 weeks post-surgery and my abdominal area feels like its full of cement. Started 1st of 12 rounds of chemo week before last - round 2 tomorrow. Ugh - I wasn't this sick the last time. Glad you're doing we'll - I know I'll be in your shoes soon!

Hope things are going well for you :-)

Hi Nana, You mentioned that it took 2-3 months to be approved for SSD - did you file on your own or via an attorney?

By the way, thank you for being part of this site - I read your journey / wall and admire your strength and perseverance and your big heart to share, help and encourage all of us. You're wonderful.