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(2 replies, posted in General Discussion)

Moderator, No treatment since 2011. Numbers that is my question? ONC referred each time a scan or numbers when up and they didn't feel there was anything they could do. I finally change Dr. although in the same office. I like the new Md. They completely reviewed the fill and said not much left to offer. If I wanted to try anything else they would be open to supporting.Not turning him/her down just after coming to home didn't feel I was ready or met the need. I have gone through this as I said since 2010 and it's June original surgery. So I'm at the 4 year mark. I have ready from others that they have had low numbers but lots nets sp. and other metastasis. I have been already told stage 1V and growth. Very surprised and confusedd fearful about findings and don't want to tell family for fear that the unclear situation is wrong. Sorry to be so vague but it is. I have an appointment with my Gp and will ask her hopefully have more clarity. I also have red that the ca19-9 isn't an indicator but a number reflecting growth or more metatisis. thanks for reply and guestion I feel less confused and stupid with you also questioning the same as me yes I havve insurance but the co-pays and remaining balances are tough. the doctor who did the ovairan surgery didn't hold off even with the 50.00 per mo went to collection. it's tough.

2

(2 replies, posted in General Discussion)

It has been a while since my last post. In March 2010 I was diagnosed and surgery was scheduled for June 2010. The resection was a success all nodes and margins were clear. However they suggested I do a round of Chemo to be safe as an adjunct treatment. So this started in August/september. I had a difficult time couldn't get a rhythm going due to levels and getting sick. Thus they suggested I stop. By christmas 2010 I was referred to hospice. However hospice didn't feel I was ready and they would check in on me for future care. In March 2011, a large grapefruit tumor was noted and the team decided not only did I have cholangio but now it was also Ovarian so immediate surgery was set up for the end of March. One more sugery and then the case went to the tumor board between the city I live in and UCSF. The outcome was no other options. Back to hospice who again said not ready and then more chemo suggestions. Didn't go that direction as I didn't want to feel sick and go in and out of the hospital while dying. Since then blood work, scans with increased sites and changes, extreme tiredness. Again back to hospice and the not ready yet was returned. Finnaly I decided to live and live I have been doing along with working a full week and moving on in my live. A few more scans with increased results, but no treatment. CA19-19 up, up and suggestion of hospice, not yet they said. So. decision is to live and let it go. Since then my levels have continued to go up until last summer when then began to come down, and down and down, last month the CA19-9 was 30 lower than after the resection. I called my doctor and they indicated that this was good and is a scan scheduled? (very expensive and this has taken a toll on finances to point of possible bankruptcy. I shared with the nurse no scans scheduled and that the last one they thought I was developing a reaction to the agent. Thus no scans scheduled. The nurse told me to continue to do what I'm doing and let them know if I need anything. I'm baffled and don't understand these findings. Any feed back direction would be appreciated, Also on the exhaustion and food for someone not in treatment. Bless you all your in my thoughts and prayers. Wisdom

3

(0 replies, posted in General Discussion)

It has been a while since my last post. In March 2010 I was diagnosed and surgery was scheduled for June 2010. The resection was a success all nodes and margins were clear. However they suggested I do a round of Chemo to be safe as an adjunct treatment. So this started in August/september. I had a difficult time couldn't get a rhythm going due to levels and getting sick. Thus they suggested I stop. By christmas 2010 I was referred to hospice. However hospice didn't feel I was ready and they would check in on me for future care. In March 2011, a large grapefruit tumor was noted and the team decided not only did I have cholangio but now it was also Ovarian so immediate surgery was set up for the end of March. One more sugery and then the case went to the tumor board between the city I live in and UCSF. The outcome was no other options. Back to hospice who again said not ready and then more chemo suggestions. Didn't go that direction as I didn't want to feel sick and go in and out of the hospital while dying. Since then blood work, scans with increased sites and changes, extreme tiredness. Again back to hospice and the not ready yet was returned. Finnaly I decided to live and live I have been doing along with working a full week and moving on in my live. A few more scans with increased results, but no treatment. CA19-19 up, up and suggestion of hospice, not yet they said. So. decision is to live and let it go. Since then my levels have continued to go up until last summer when then began to come down, and down and down, last month the CA19-9 was 30 lower than after the resection. I called my doctor and they indicated that this was good and is a scan scheduled? (very expensive and this has taken a toll on finances to point of possible bankruptcy. I shared with the nurse no scans scheduled and that the last one they thought I was developing a reaction to the agent. Thus no scans scheduled. The nurse told me to continue to do what I'm doing and let them know if I need anything. I'm baffled and don't understand these findings. Any feed back direction would be appreciated, Also on the exhaustion and food for someone not in treatment. Bless you all your in my thoughts and prayers. Wisdom

Randi, brief association with the site and back for support and info to help me through this illness. I have no words to express the joy I feel about the news of life and journey towards wellness and a healthy life. I will keep you in my prayers for continued great news. Wisdom

Laurie, This illness is very tough and the emotional side as you and your husband have already experienced is all over the map. Since my original surgery 6/2009, 3 1/2 years what has helped is one mindfully and a moment at a time. Living each moment as a gift, I acknowledge this is time I would never have had. I relish in seeing the sky in the morning when I drive to work, listening to music, and working with kids. On the tough days, I cry and reach out to those available and we laugh and cry together. I feel less alone and scared. Take time for yourself and know you are not alone accept strength from you faith. and spend time together. I occasionally drink socially have not seen a difference, not sure what the standard is for CC and alcohol. accept peace from a moment that is special to you, blessings Wisdom

6

(5 replies, posted in Introductions!)

Thank you for the words of hope and encouragement. I live in another state and was lucky enough to go to UCFS where my resection was done, 16 hours of surgery. For a long time I emailed them and went back to see my team, they are great down there. I have returned home and the follow-up is really poor. Good to know others have had option like the B12, and need for silence at work. I have new insurance and will look to see if another option is available re changing MD when INS. chgs next week. I have asked for time off and was told no coverage. I decided to ask what is available and to receive that time for two weeks. So my reprieve is coming up 1/7/13 for two weeks. I also appreciate knowing another put on the "good face." I'm sad that your sister had to do this. Happy New Year to all of you and your families,  Wisdom

7

(5 replies, posted in Introductions!)

I haven't posted in some time. My handed down computer crashed and now I have another. It was suggested that I start in the intro section. I'm not real computer literate. I hope this goes where it needs to. So my story. I was diagnosed in February 09' and had my resection in June. After discharge from UCSF I was referred to an oncologist who recommended Chemo as a cursory measure due to CA-19-9 was normal, and all the signs pointed to "we got it all." I had a new set of labs in September 09' and levels were low so I could not start the Chemo, six weeks went by and I was ready to go, I was able to finish two rounds and then labs dropped. This sequence continued up to December. The Oncologist didn't know what else to do for me and referred me back to the surgeon @ UCSF.  Several test and appointments later I arrive at, ... oh god you have developed Ovarian Cancer as well. Surgery in March and more test, including looking for the best agent only to find out not Ovarian and grapefruit size cholangio. Back to the team in the city, and a look at other options. My oncologist asked what is my goal. I indicated to heal and be well, if this isn't an option, to quality of life, as I'm living while dying. I didn't want to have low labs, and have in and out of the hospital as I had in the past. My doctor asked if I would want to be notified if a trial came up that I would qualify. this did not pan out and so... No treatment as my Team doesn't know what else to offer. I have done scans and labs, but as of recently only labs do to building up a reaction to the scan drugs. last labs low sodium, white cells, platelets, and total protein Ca19-9 580. I feel tired and have moments of dizziness. Abdomen distended slightly - no fluid. Md no longer following me as I'm not being treated....it is strange. I'm struggling with mood and feel distance from people around me. My job doesn't know as they are not supportive in general. I have some friend there and they are very supportive, yet they struggle to understand. needing to reach out to others. Thanks for reading sorry for the length. Glad to be back on, Wisdom      Ultimately this wasn't

8

(1 replies, posted in Chemotherapy)

I did first round of chemo with gemzar but could not continue after six months due to low labs. Now new tumor sites...surgery and now my dr. wants me to try again and use xeloda. anyone use this agent? How is it going? wisdom

Hi everyon, weather in Reno NV, sunny, not to warm clear blue sky, took a deep breath and smiled. looking forward to 60 degree over night. and sweet dreams.....to al Wisdom

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(13 replies, posted in Introductions!)

Hi I'm Wisdom. I was diagnosed last march "09." I had resection surgery in June and my CA19-9 was inthe normal range. I attempted to do Chemo, but my labs tanked to ultimately the doctor suggested I stop. No new treatment since December. I have been watching my CA-19-9 and it continues to climb, now 333. no specific symptoms, very tired. I'm scared and feel pretty much alone. It's good to find the site, sad to know either you or a family is ill with this disease. Glad to know I can come to site and chat. W.