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Fay,
I totally understand as my mom got pancreatitis and prolonged her hospital stay from an ERCP and finally went away, but it took time to heal. That is always my fear with ERCPs, but she still needs them.
Good for you in asking for molecular profiling.
Keep us posted.You are in the right place to get support! As hard as it may be don’t take the exact months a doctor gives for a patients life. No one can determine that. Keep trying and be positive to do anything that will help your husband. Nutrition, lifestyle, well being is very important no matter what doctors recommend. I have been to so many medical appointments in a short period of time, and know they are not experts in nutrition. I had to create and be the judge of what my mom eats, including supplements. I don’t want to advise on nutrition as you know him the best.
Did they suggest a break in chemo or continue? How about radiation? Has he had molecular testing for possible clinical trials or immunotherapy? What are all the options other than gem/cis?Good Questions to ask the oncologist on how often you need the CEA or CA 19-9 tests. My understanding is CA 19-9 test is not a good indicator if cancer has spread. You need this test as well as scans. The level can fluctuate for any reason.
I have heard it takes a few biopsies sometimes to get a confirmation from pathology of a malignancy. It took my mom two ERCPs. Make sure you have the best GI doctor to perform the ERCP as it’s a challenging procedure. They can use special instruments to make biopsies easier. It’s seems routine monitoring using a CT scan or MRI on a set schedule would be more useful to keep track of the cancer or tumor and if it has spread.How often do you have to get the chemo? Will your oncologist give you a break to recover from the side effects, since it had a big impact on the body?
Thank you for the responses. I wanted to be certain, so it helps to know if fever is present or any other indication. I suppose to be on the safe side, as much as I dislike it, it should be replaced every 3 months. This is also a stressful procedure in the hopes that there are no complications. I prefer to stretch the time and wait longer, but our GI doctor has now recommended every 3 months, perhaps at the same time monitor tumor growth. Since tumor growth does create problems in placing stents.
Thanks so much for sharing everyone! There is always some risk with long term prescription drugs, and highly agree about too much inflammation in the body can cause various medical conditions. Even if you choose conventional treatment or not, make sure to have a diet that reduces inflammation.
Darla,
You made an interesting point if this condition was lurking in the bile ducts for years before diagnosis. I highly believe that this is the case, as most people don’t get scans for that area or get symptoms to get checked until it’s more severe. My mom was diagnosed in November 2016, and after I did some research noticed she had this condition for 2 years! Inflammation probably made it worse where she got reactive and scheduled for testing.
Also, her primary doctor was never alarmed about the unusual ultrasound 2 years before diagnosis to look deeper into it by sending her to a specialist. He said her liver tests were normal. Also, a regular colonoscopy/endoscopy doesn’t show anything either. Even the doctors get mislead, until there are severe symptoms.Thank you Christina for sharing your story.
I understand your journey through this, and experiencing the same with my mom.I just wanted to express my gratitude of you being part of the forum, and a day at a time. It is okay to miss your mom, and cherish everything from childhood on. You are an amazing daughter! It is okay to take the time and renew.
All the best for you and your family.
Interesting that a few have been on statins which have side effects.
My mom took Crestor for her elevated cholesterol which was probably not necessary and discontinued over a year ago due to liver enzymes increasing.Here is a portion of the side effects of this drug which is most likely similar to other statins.
This medication may rarely cause liver problems. If you notice any of the following rare but serious side effects, tell your doctor right away: yellowing eyes/skin, dark urine, severe stomach/abdominal pain, persistent nausea/vomiting.
Some prescription drugs are overprescribed for the profit of pharmaceutical companies and should be monitored very closely and the benefits should outweigh the risks. If possible by diet or lifestyle changes should be the first recommendation.It’s good to understand sources of disease, but I know it’s acceptance and moving forward to the best treatment for CC. I am glad we have this site and growing awareness, hopefully effective clinical trials.
Make sure anti-inflammatory diet is given to your loved one. It seems inflammation is the high source in body. This could be greens, berries, juicing, or supplements and extracts.
Thank you for sharing and taking part in the discussion.
Ben,
Interesting post, since my mom is in a high inflammatory state, and possibly down the long road would consider prednisone. Keep us updated on how this drug is working. Did she get her CRP levels checked for the inflammation? If so, what was it?
All the best for your wife.Interesting, and thanks for sharing.
My mom’s are listed below.1. She had anemia long ago, now it’s back because of CC. Mild gallstones, but nothing serious to be removed.
2. Cholesterol and Blood Pressure medication (I would need to find out names) She stopped them about a year ago. I always know prescription drugs cause other problems, and told her not take these and change her diet.
3. Average activity, not a fitness fanatic.
4. Semi healthy diet, occasional red meat, fried food, but balanced with veggies, salads and fish. No alcohol and no smoking.
5. She seemed to have inflammation before diagnosis but more mild. The CC was actually in an ultrasound a couple of years ago, but the primary doctor never followed up by telling her to seek expert opinion until it got worse. It looks like this has been in her body for some time.
6. No liver cancers or diseases in family, only her side of gallstones.I’m just wondering if all cases started with mild inflammation which grew out of control and it happened to be in this region. She did need to improve her diet and lose some weight.
Alikemal, There needs to be more studies and clinical trials for immunotherapy drugs for CC. It is limited at this time. Hopefully we can brings this forward through sites like this foundation.
Hello Joe,
I am sorry and understand your situation. I wish oncologists would have various treatment options rather than the gem/cis combination which seems to be the first treatment of choice. How about chemo sensitivity tests? I thought these were meant to check if a treatment will work before giving it to the patient. This would prevent unnecessary chemo toxicity which also kills normal cells. I was going to ask this question the next time I see an oncologist. I know the tough road in making decisions and hoping it is the best decision. I am on the same path.Have you requested for genetic mutation tests? Something that increases a probability of a treatment to be more effective. No matter what keep her on good nutrition even if they are small meals. Can you give her fresh veggie juices or supplements if she is malnourished? Obviously, if she will get more treatment make sure supplements are okay.
Did she reject the blood transfusion? Sometimes patients reject it if the blood is not tested for certain antibodies.All the best!
Hello Crissie,
When my mom was diagnosed she was the first. There is no one in her family history with this condition. It was a shock to all, and I don’t concern myself for it to be in my genetic makeup. I would just go for my regular physicals and blood work, but don’t be paranoid. Just try to live a healthy lifestyle.
