luluu
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Hi Jane, I just wanted to add something based on my experience with my husband.
Don’t allow too much time to go by without insisting on new scans to see if chemo is working. If too much time is spent on one type chemo and then find it’s not working for you…then those other options may not be available to you.
My husband’s oncologist kept saying he wanted to see systemic results before trying cyberknife, but in fact…he really wouldn’t have known because he never track the progress properly. His numbers where, but the doctor said the chemo wasn’t working…he was an ass and I feel he is the reason my husband is not here today.
Keep track of your tumor markers yourself…get the numbers from back when first diagnosed and see where you are. YOU BE IN CHARGE, and don’t let them give up on you.
By the time we moved to another doctor, the damage was done.Good Luck, stay strong and fight like hell.
Lulu
Just for my pease of mind…could you all share with me the size of your tumor and if it’s intrahepatic or extrahpatic and if you have mets. Just trying to figure out what went wrong with my husbands treatment. I kept asking about radiation and he kept blowing me off.
I’m sorry if this is wrong to ask, but I’m have anger issue to work through because of lossing my husband and understanding why things fail for him might help.
Thanks so muchHi Barbara L, What does it mean that your tumor burst. Is that a good thing? Sorry for sounding stupid, but i don’t understand. What made it burst?
LuLu
Hi Barbara, Sorry I can’t help you but there are many great people on this site that could, and I’m sure they will post soon.
Where are you being treated? Your CA is very low, which is good. If you’re not satified with the answers you are getting, find a new doctor and hospital. Since this is very rare, many doctors don’t have experience with it and therefore don’t have the right answers.
Let everyone know where you are at and I’m sure you will get some feedback on hospitals/doctors in your area.
Good Luck and keep fighting.
LuluJean, I love sharing…..I pray everyday that something I’m doing will help. I love doing this for him, it makes me feel not so helpless. I will not stop fighting for him…and you should never, ever stop fighting too.
Here is the link where I purchased the dried berry powder on-line.http://www.nutrifruit.com/shopping/product_details.php?id=7
Purchase the Essiac also….a friends mom is in remission from ovarian cancer and her numbers are remarkably low and the doctor said it is unheard of….she attributes it to the Essiac tea.
Vincent, My husband was diagnosised in March…..I’d like to think he’s feeling well, but since it affects everyone different,I don’t know how to compare it. He’s still active…works about 25 hours a week.
It is extremely frustrating, I cry everyday. The one thing I’ve learned through this is dont let the doctors tell you that alternative stuff is useless, I don’t believe it and when you’re dealing with a cancer that can not be cured, why should you give all the control to the doctor.
I’m fighting for my husband’s life, “I will not let cancer take him”As far as doctors, we just change to a specialist in GI cancers. We had it with the jerk treating him before, he probably never even saw a patient with this cancer. He was just going through the motions.
Research the big hospitals, check the doctor’s speciality….and go see that doctor.I have said since day 1, thank god for the internet…..all the information is at our fingertips. I find myself always on google……looking for everything and anything.
Good luck to you both, take care and fight like hell!
LuluVincent, So sorry about your Mom’s diagnosis. We wasted a lot of time with an Oncologist that obviously didn’t have any experience with CC. You are headed in the right direction……run away from that doctor and hospital and only see a doctor who specializes in this type of cancer.
As far as alternative stuff…I will tell you what I do for my husband.
Mornings and before bed he gets a smoothie with yogurt, flax seed oil, whey protein powder and fresh, except now because of the change of season, frozen fruits such as black raspberries, Acai berry, blueberry, etc…Recently, instead of yogurt I’ve also been using soy milk. During the day he will get about 3 fresh, home made juices…things like beets, kale, spinach, apples, carrots, cauliflower, broccoli, in total he gets about 48 oz. of juice, not including the smoothies per day. Also, I just recently purchased Freeze dried Black Raspberry, see link, I add that to his drinks as well.http://www.sciencedaily.com/releases/2008/08/080827163933.htm
He gets 8 teaspoons of Essiac Tea daily, I also give him major
supplements….he takes Green & Whte Tea supplement New Chapter brand, vitamin D3, “BroccoliLive” i think also New Chapter brand…garlic supplement, TurmericForce, also New Chapter….Google ” Turmeric and Cancer” and you’ll see some interesting information. Shark Cartilage, Cat’s Claw, Vitamin C, calcium, magnesium. I think that’s it. Of course, I try to get this into his diet , but when you’re that sick, you can’t get it all from food.
Read this link…..
http://www4.dr-rath-foundation.org/NHC/cancer/cellular_solutions.htmAnother thing I do is he only drink Ionized water. It may or may not help, but I’ve heard some convincing information.
Anyway, I do anything I can find…my husband is young like many with CC.
Good Luck and the best to you and your family.
Lulu
Charlene, My deepest sympathy to you on the passing of your husband, the love of your life.
God bless you and may he give you the strength to be strong.Lulu
Lainy, I am soooooooooooooooo happy for your husband and your family. There must be a lot of celebrating going on.
You are truly blessed.LuLu
Hi Jobe, My husband also takes vitamin D3 …check out the following link.
Lulu
http://www4.dr-rath-foundation.org/NHC/cancer/cellular_solutions.htm
Marions, I find this information very encouraging also and would like to know more. Is there anything in common with these folks….like diet, supplements, etc? We must dig deep to find out why people are able to survive and many can not. I pray that this will be my husband.
LuluCan she hold fluids down. Try shakes. Buy yogurt, some frozen fruit is easier, also bananas–get the powder that the body builders use put in a blender. Lot of nourishment, I pray it will help her.
Dear Anonymiss, You took the words right out of my mouth. If I hear Breast Cancer awareness month one more time…..so glad it’s almost November. Of course with all due respect to breast cancer patients.
I am too frustrated with the lack of awareness, research and treatment for CC. If I heard it once I heard it a dozen times, how rare this cancer is….is that suppose to make me feel better.
There must be someway to get this out there. I think sometimes I am just going to head to Washington DC and raise hell.
If i could only get a chance to ask questions to the presidential candidates I would ask them whether they plan on increasing funds for cancer research. That’s a question they probably haven’t had to answer, I wonder why.
If as caregivers we weren’t so busy trying to save our love ones……we would have time to advocate for our loves ones.
LuLu
Glad to hear from you Karen and glad I did find this site. I wake up every morning hoping it was all a dream and this wan’t happening to my wonderful family.
So happy that some of those damn tumors are dead. Please tell me about his bile duct tumor…did you husband have a resection?
My husband’s whipple was aborted because of two small spots on liver.My hubby has been doing chemo since mid June…so far not working.
I don’t understand why they won’t try cyberknife on him. I am getting so frustrated because I don’t like the answer.Karen have you tried some alternative stuff to build his immunity so maybe it will prevent new tumors from poping up? He is so fortunate that he is responding to treatment–now finding a way to keep new ones from appearing. I’ve read a lot about supplements, vitamin c IV therapy, etc…I think it’s worth a try.
Why the letter writing, what were you asking for from the doctors?
Maybe I should write letters to find someone to try cyberknife on him?You are so right about the wonderful people afflicted with cancer.
I pray everyday that god does not take my husband from me, he is too young. We have so much life to live…..I need him to be here to see our kids graduate from college soon. I need him to grow old with.I thank god for finding this site, it’s great to be able to talk to people who are unfortunately going through the some thing.
Thanks for listening.
Karen, I also live in New Jersey and am the wife of a cc patient.
How is your husband doing. Can you tell me a little about his treatment, has it helped?
Forgive me for being nosy but I am just trying to get as much info as possible.
We may be changing oncologist to someone who specializes in these types of cancer….not sure it will make a difference, but not happy with current doc.
Do you use the hospitals and docs in NY or did you find someone great in jersey?
Thanks
Lulu
