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Tears came to my eyes when I read your first post. My prayers have been with you.
Marion, this is a question for social security. All I know for sure is that I was diagnosed with inoperable extrahepatic cholangiocarcinoma in July 09, applied for ss disability in Aug 09 and approved in two weeks.
My eligibility date went back two weeks before formal diagnosis which was the last day I worked at my job. I had seen my local doctor with complaints of jaundice and itching without a rash but did not have a diagnosis.
At that time it seemed like my last day working was important to social security. I’m sure they look at each case individually, but those of us with cc get looked at very fast.
I was diagnosed with extrahepatic bile duct cancer, so it seems it has been included all along.
I was told my bile duct cancer was on the quick approval list. That was over two years ago. You’re probably be right. It’s probably listed in the small print under liver cancer.
I am so sorry to hear Sara passed away. There’s no rhyme or reason of why that we can understand, but I pray you will be able to feel God’s arms around you.
I applied for social security disability at our local social security office just a couple of weeks after initial diagnosis of inoperable cc, and was approved in two weeks. Had to wait 5 months before the first check was issued.
Lisa was an inspiration to my faith and an inspiration to me during this journey with cholangiocarcinoma. We will meet in heaven. Prayers are being said for her kids, her Mom and Dad, and everyone she touched.
No chemo 4 weeks prior is part of the protocol of my trial. I hadn’t been on chemo for almost 9 months, so that part wasn’t holding it up for me. It still took about 4 weeks before the actual trial started. I had to wait until a spot opened up. As it is such a small trial and phase I, there are only 3 new people at a time on the Mayo Rochester part of it. It’s not necessarily this way with other trials.
Ask if your mom’s name can be put on a waiting list for the trails they are considering her for.
If you want, you could ask your oncologist what trials your mom is being considered for and then look them up. Every trial has a study coordinator who will be most happy to answer any questions you have. Ask who that is. The study coordinator will have a direct line and email. Mine sent me the consent papers just to look over a few weeks ahead of the start of the trial.
You may know this, but your oncologist’s secretary is the person to call when you have questions for your doctor or need a prescription. She will give him the message. Have your Mayo # on hand. I always receive calls back from the doctor the same day. They treat me so good.
As far as side effects. The trial has been much easier than my very first treatment of radiation and 24/7 FU-5 chemo in the fall of 09. That treatment left me with an ulcer on my esophagus. I have had a lot of problems with stomach acid since. Priolosec totally healed me up and took care of it, but I can’t take priolosec with one of the drugs I’m on now because it lowers it’s effectiveness. It took a few weeks after trying other over the counter products and then my finally asking my oncologist if there was any prescription I could take because it was keeping me up at night and then I would be so tired in the day time. My oncologist checked with the specialty pharmacist and found a prescription I could take. I am happy to say I am not having that problem any more.
Another side effect was “the rash”. They call it a rash but it actually looks like acne, although they say you can’t treat it like acne or it will get worse. It’s a side effect of one of the oral drugs. When my doctor first heard I had it he came into the chemo ward while I was getting chemo with a prescription in hand that has put it all under control. The study coordinator sees me every time I go for chemo and she told him about it, or else the chemo nurses did.
I go to Mayo 3 times a month for chemo and take two oral chemo drugs daily. On my week off I still have to have blood taken locally and the results are faxed to them. Once a month I see the doctor.
I had an MRI and other tests the day before the trial started. At the end of the first cycle (3 weeks on chemo, 1 week off) I had A CA-19 tumor marker test which showed by tumor markers have already gone down around 287 points. Next Friday I have another MRI to see what’s happening.
Hope there was something here that helps answer some of your questions.
What clinical trial are they considering for your mom? I also go to Mayo, Rochester, and I’m presently on a phase I clinical trial. They keep very close watch over you.
I think it’s almost ready to begin the phase II part of it. Going to ask that question at my next visit next week.
In my opinion, clinical trials are the way to go. Trials are started only after the drugs or drug combinations have shown promising results in the lab. Problem for us with cc is that there just aren’t many clinical trials available.
I, too, am very pleased with the excellent care and treatment I receive at Mayo. We are definitely spoiled when it comes to getting the results from our tests.
I know from first hand experience that a stent blockage will make you sick, cause vomiting and will bring on the jaundice look I’m glad they are looking at it tomorrow, but I really think blood work should have been done today to check out a stint blockage. This is your total bilirubin count. If he gets worse, don’t hesitate to take him to an ER. As my local doctor told me, blockage can go in sepsis really fast. Antibiotics are started before you get the stent change if lab work shows the bilirubin level up.
You husband may be like me. We can get sick really fast, and then get well really fast.
My prayers are with both of you.
Thank you, Lainy. My husband told me to tell you that he loves you. We both cried as I read your post.
I highly agree that the Mayo Clinic in Rochester and Washington University in St. Louis are in the forefront of liver transplants. It’s truly tragic if doctors do not tell their patients about this possible option.
BUT to say “…there is no other treatment that offers more than a few months of survival” is very discouraging.
I go to Mayo Clinic and went through the protocol. Like many others I did not qualify for a transplant. As a person with inoperable cc I am now almost 24 1/2 months since diagnosis. Miracles do happen, do not loose faith.
I am so sorry to hear that Marc has passed away. My deepest sympathy to you. I am glad you two were able to enjoy more cruises.
God bless you.
Itching without a rash. Also seemed a lot more tired than usual. Within a month I was jaundice. No pain whatsoever.
Did have to change doctors because the practice I originally went to for the itching just put me on steroids and told me a liver problem or lymphoma would be very unusual (I asked as I had read about itching as a first sign). They also felt more blood work would not be in line as I just has blood work including liver function tests two weeks before at my yearly physical and all was good.
Yeah for you, Yeah for Tom and thank the Lord!