1 (edited by Wisdom Fri, 28 Dec 2012 17:45:20)

Topic: Introduction

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

Re: Introduction

Dear Wisdom, I am so sorry to read about the terrible journey you have been on! The best suggestion I can give you is to go to another Hospital and see what they say. UCSF is supposed to be very good but maybe a "new pair of eyes" will come up with something different.Your Doctor should be told about your dizziness and my husband had taken B12 shots for tiredness, once a month. I don't understand how your Doctor can leave you as you still have CC, whether or not he finds another plan. You might have to consider looking in to disability instead of working. But the first thing I would do is gather all your tests and LABS and find another Doctor to see them. Wishing you the best of luck and hope your story takes a turn for the better!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Introduction

Wisdom,
I agree with Lainey. Perhaps you need a new Dr. Have you tried Stanford? You are not alone. Garner all the support you can and allow yourself to have the emotions. It must be difficult to keep your "good face" on at work all the time, but I do understand why you are staying private. My sister (with ICC) felt the same way though she did take a medical leave, she didn't tell them why. Anyhow, know you are not alone and there are treatments still available to you.
Willow

Willow

Re: Introduction

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

Re: Introduction

Hi, Wisdom,

"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...."

Base on what you wrote,dizziness and tiredness may be related to anemia (low RBC,H & H) ; most doctor can recommend something according to the Hb level.
Increase sodium intake a little bit may help; Low white count can be increased by using  injection medication like G-CSF;low platelet can be helped by platelet transfusion and pay close attention to drug-drug interactions if your husband take other medications;low protein can be helped by Ensure, soy milk, milk and other protein products or albumin IV infusion. Ca19-9>129 is indicative of CCA disease but of course Both CEA and Ca19-9 are also related to the inflammatory state of the body systems in your body, so it is not the  absolute indicator for CCA.

I will seek second opinion on medical oncology or hematology to further the search for treatment options; it is also not a bad idea to see a hospital nutrition support  team member  to adjust your diet to help your condition.
I am ,like you,just a patient and not a doctor;and since you did not reveal where you are located, I cannot recommend the nearest places for your treatment;you can ,however,find them in the experience forum of hospital section on the this web site. I may add, a disease like CCA is more like a chronic disease ,like hypertension; it cannot be ignored,it requires taking medication and treatment constantly to prolong the live of us who suffer CCA.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Introduction

Hi,
this link is related to how to deal with symptoms.

http://www.ccjm.org/content/78/1/25.full

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.