positivity
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That’s great you are responding to chemo. How are you feeling? Any major side effects ? It is a waiting game from scan to scan and always instill hope in between.
Thanks for sharing.Great April! I made sure my mom didn’t eat red meat or fried food, and reduce sugar intake. I also included supplements and daily lemon water and ginger. Hopefully, you will come across some successful clinical trials.
I agree with googily. I had to say that to myself a couple of months ago, or else it would be so difficult to endure. “One Day at a Time” It’s tough, but pulled it together to help. Please get a few opinions from oncologists, and you may like to work with one more than another. Genome testing seems to be beneficial, so definitely mention this to the oncologist. Keep going and don’t give up.
Thank you for sharing Melanie, if more people like you step forward, the easier we can collect information. This will help everyone. What kind of CC do you have? You stated that you are not receiving treatment. Have you made changes to your diet or lifestyle?
I give my mom supplements not for the weight gain, but to make sure she is getting all her nourishment not just from food but extra vitamins and minerals. I would not turn to supplements for weight gain, and would rely on food only. I understand it is harder for her to gain weight, but as long as she is maintaining it at this point.
If possible use the real sources of fish, of course as long as you are not allergic and like the taste. This includes salmon, tuna, sardines, etc…I give my mom a few servings a week. Obviously, stay away from raw and make sure the fish is well done. Sometimes it looks wells done, but not in the middle of the cooked fish.
I read about this, but since the GI system is very sensitive and patients can eat small quantities at a time, I thought it would be too much to digest. Seeds are tricky, so decided not to give to my mom. She already has a sensitive stomach and eats small portions throughout day. I suppose you have to judge on an individual basis.
Annabel,
That is great you did not give up and continued to look for help and a solution. I find that this condition is not something to accept the diagnosis and the first treatment recommendation. There is no “one cure/treatment that fits all”. It seems that genetic testing is very useful and should be used from the beginning.Hello Summer,
Definitely have her get an MRI. This gives a clearer image of the obstruction and tumor. This also does not give radiation like a CT scan. MRI also shows if it has spread to other organs or tissues. The understanding I have so far of a PET scan is to determine how active the cells are if there is a malignancy. Obviously, there are other benefits. They inject glucose to the cells which concerned me at first. You still need to get a diagnosis. That would be hard to treat if they are uncertain if it is benign or not. The MRI should give the measurement of the tumor.Keep up the good work in helping.
Hello Summer,
Did you get a pathology report that confirms the diagnosis of Klatskin tumor? The doctor takes a biopsy during the ERCP, and if unsuccessful usually tries a second time. The brushings are not as successful as a biopsy of tissue sample. Look up ERCP and methods of biopsies. There are special devices to help. It’s great you are getting several opinions. Why was the stent unsuccessful? Did it migrate? Also, why did they choose a metal stent?Summer,
I did an internet search and here are the common side effects of Gem/Cis. These are not the long term effects which I would think is unknown from person to person.The following Gemzar side effects are common (occurring in more than 30%) for patients taking Gemzar:
•Flu-like symptoms (muscle pain, fever, headache, chills, fatigue)
•Fever (within 6-12 hours of first dose)
•Fatigue
•Nausea (mild)
•Vomiting
•Poor appetite
•Skin rash
•Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.This is for Cisplatin:
Possible side effects of cisplatin may include:
◾Nausea
◾Vomiting
◾Diarrhea
◾Hair loss
◾Loss in ability to taste food
◾Hiccups
◾Dry mouth, dark urine, decreased sweating, dry skin, or other signs of dehydrationDo a thorough search on both drugs. It’s important for patients to be completely aware of side effects and doctors should discuss it. Good question to ask.
Marion,
Does the foundation have a login and PW set up to access the articles on the site or do we sign up?Thank you!
Hello April,
I noticed you mention lifestyle changes such as proper nutrition which is no processed foods, no meats, and reducing sugar. Of course including exercise! That’s great that chemo is working for you. Are you going to look into immune therapy treatments? I would love to see changes in treatments for CC, giving more options. It would be great if it is a condition that can be controlled rather than a cancer.Keep up the good work in healing! You are doing the right thing by participating in your health rather than only relying on the chemo.
That’s great chemo is working for you Karen. As you know it has different effects on people. You seem to be handling it well. You also seem to have incredible energy in being able to resume hiking and skiing, obviously very athletic before getting CC. Have you changed your diet?
I hope everything goes well with scans and keep us posted.
