donnac
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II have only posted a few times but thought it was time for a visit. Since I last posted my condition has changed a bit.
I have a large tumor obstructing my intestine causing a partial blockage. This all started on July 18.
I hate it that I am on TPN and cannot eat or drink. The tumor is inoperable. My favorite thing in life is to eat and cook . I feel robbed but am adjusting quite well.
BUT I still love cooking which i do every day.
Thanks, Gavin. I thought it did not post so resubmitted.
Anyways, got into the urologist today and guess what? The radiologist wrote the report wrong. He confused the good and bad kidney so I am flying high right now. My right kidney is the non functioning one that is enlarged from a blockage 2 years ago and he wrote it as the left one that was the “severely enlarged” kidney which happens to be my good kidney. The news brought tears to my eyes so I am now in good shape for the time being. Alleluja. And yes, I am celebrating.
DonnaI got CC as a result of ulcerative colitis. It was a fluke on how it was discovered. i had a bowel obstruction that was not diagnosed. I was in and out of the hospital for a couple of months with every procedure available with no diagnosis. My blood levels were all normal and i was feeling fine except for when the bowel would obstruct which was very painful but that was off and on. A surgeon finally operated on me and a tumor on my ovary had blocked the intestine causing this discomfort. It was a shock to go in for a bowel obstruction and coming out with the words that I had bile duct cancer. It was not a huge surprise since i was diagnosed with PSC 12 years earlier however. It metastisized to my ovary and rice like specks in my peritoneum. This was 16 months ago and i am feeling fine except for fatigue but that goes along with the disease and chemo.
I have used marijuana for my migraines and it does reduce the pain to a level where it is tolerable. I have not needed it for any cancer pain since i have not experienced it yet, but i would think if it helps deaden the nerves for a headache, it would help with other pain. I have smoked and ingested it and did not notice the effects being any different.
DonnaThe word from my oncologist is that it is most likely the Gemzar. My blood work came back normal. She said that normal management of chemo is to be off of it at times. I did not receive my infusion last week and am off this next week. The funny thing is that the day of my appt and infusion i was practically back to normal so i cannot attribute it to the Gemzar. We will just have to wait and see. I will be back on it in a couple of weeks and if it rears its ugly head again, we will know that it is the drug.
My CA19 increased again. I have not had a scan in one year and next Tuesday i will get one and on Thursday will see my dr. This is going to be a tough week for me not knowing what it will reveal. I would think the cancer is progressing if my CA 19 is rising, right?
I feel badly for you, Cathy, that you are dealing with this. It is so frustrating.
Thanks to all again.
Donna
Thank you so much for all of the input. When i went to ER 11 days ago they did a CT scan and lung x-ray which were negative. I go in today for my blood work and treatment so in a couple of hours i will know what my blood levels are. I do believe it is the Xeloda and perhaps the Gemzar. There are so many questions unanswered when i talk to my doctor. I am not blaming her, it’s just the nature of cancer and the individual. It is just frustrating not to know what I can do to help alleviate the problems i am having.
I am sleeping horribly also which seems to make my heart beat so hard. At times, like last night, I got 3 hours of sleep and that weakens me even more so i do become a couch potato, not my nature at all.
I have been very fortunate since my diagnosis 16 months ago. I am on the go all of the time and do rest a lot in the afternoon, but considering the severity of my health, i am doing so well and so blessed with family and friends.
I will tune in later and let you all know what the blood work reveals.
Hugs,
DonnaOMG!!! Would that not show on a scan? How do you determine if you have it? That’s all i need is another health problem. I will certainly ask my doctor about it.
Thank you.Again, thanks for all of your warm welcomes.
I did have genetic sequencing done and was told there was no clinical trials for my type of tumor. However, there was another trial i looked into, called B6J396. I did discover that one had to have a failed a platnium based chemo. I did not qualify so that is out. I have also been in touch with some fantastic doctors…..one in Great Britain, one in Canada and one at the Mayo Clinic that heads up trials. It is so amazing to me that they would email me back, not being a patient of theirs. And quickly may I add. They all said they had nothing to offer. So, after much thought and surfing many websites, I have decided that i will not go further and check out clinical trials. With the research i have done, there are so many side effects that i do not want to deal with. If it was an FDA approved drug, I would look at it differently but the current one i was looking at was a phase 2 so it’s still in the early stages as far as i am concerned. . At the present moment, i am feeling great, have energy, and if not told, no one would know i have cancer or on chemo. I know I will not be feeling like this forever, but am accepting what my future will be. I know we all will choose different routes for ourselves and i feel comfortable with my decision.
I am looking forward to reading this website and getting to know some of you and of course, supporting where i can.
Again, thank you to all of you kind-hearted people.
DonnaThank you so much to all of you for the warm welcome. It makes me so grateful to have access to this site. I know i will be learning a lot from all of you and getting support from people who actually are going through somewhat the same experience I am and that is so comforting, Yes, I have a wonderful family and friends but there is something special about the discussions i will be having with all of you. God bless and i will be going forward in searching for my next step.
And Marion, are you the same person that i have emailed to in the past?
Donna
