jeffg
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A- Stable no change is good in my book. But your right being optimistic/ hope is about all we have to keep on battling this CC. Their is no right or wrong way of dealing with someone who has a bleak out look except to try and remain hopeful that a cure is around the corner. From what you have mentioned, you are not doing nothing poorly. This is a very challenging journey and we all make the best choices possible. I have been battling this CC almost 8 years but it is starting to take it’s toll on me as well; both physically and mentally. Getting connected with MD Anderson was a very good choice. Being a caregiver for someone diagnosed with a terminal illness can wear you out as well. Don’t hesitate to ask for help from someone or get hospice envolved. I have a daughter your age and we watched a movie the other night not knowing the main character was going to die from cancer. I happened to look around and she was gone and I found her curled up in a corner crying her eyes out. She couldn’t understand why God was doing this to me and when I explained that I was going to be okay irregardless, she explained your not going to be okay ,your dying. I just replied I have faith and have to accept reality as it comes to me. Sometimes Daddy’s have to move on. So I guess I’m saying I can relate to the rollercoaster of emotional anguish and pain that’s involved and you can’t do it alone or be second guessing yourself as you will do your best and that is all you can do. Love and support is the best medicine in most cases. My prayers go out to you and your family.P.S. After that talk with my daughter I went home and shed afew tears myself. It’s a two way street; I often feel like I’m a burden to my family but as long as I can I intend on being with them and cherishing any and all the good times I can.
It’s a tough pill to swallow girl so don’t forget to lean on someone and have a good cry it helps. Again, God Bless you all!
JeffG.Mary: The Oxyplatin would be injected in to the blood stream I believe he said every three weeks and Xeloda pill form twice daily for so many days with a break for a few days and back on again. Stress test completed this morning. Only 2 minutes on the treadmill and the monitor showed bee bop aluha. Now have to wait for cardiologist to study pictures and decide if or what treatment is needed. I have to call them in 5 days to get report results and instructions. I suppose if it was to awfully bad they would call me. So I am on hold for chemo until cardiologist gives the okay.
Jeff G>Terri,
My sincere condolences. I viewed the Hembree’s site. It is a loving rememberance of your husband Ken. I’m sure you will think of him when ever the song “Good Man” is played. I’m sorry I can make it to his party. Enjoy it as you know he would love to see you cheerful versus sad. I wish and have asked my wife to do the same when the time comes. God Bless You and your Family
JeffG.Celia: There is plenty of hope and prayers coming your way. I’ve been fighting this dragon of CC for years and know of others who have done the same. Yes we all have different situations and outcomes, but perserverance, strength, and faith will take your Husband and your family the distance meant to be. It is a worrisome unfortunate journey I wish none of us have to travel. March, 07 will be 8 years for me. Surgery, chemo, radiation, and now back to try another regimen of chemo next week, if my CT tomorrow shows there is still some hope to be with my loved ones just a little longer. I tell you this so your aware there is definitely hope and the doctors can’t predict the duration of your battle as we are all different and respond different to different treatments. I’ve been told 6 months to 1 year several times but yet I’m writing to you aren’t I? This March will be my 30th wedding anniversary and I plan on going out to dinner with my wife Valerie and pig out ,chemo or not ! Celia, tell Richie to search for that inner strength and let it roar! I have many suggestions as well as others, but one for right now is to get richie on a prescription of 1 mg clonazepam to take 1 tablet each night before bedtime and additional tablet as needed for anxiety. I firmly believe it has been very helpful to me, as if your mind can’t get proper rest, neither does the rest of your body; Which to me means less stamina for your natural immune system. Enough of my rambling. Keep your chin up but also don’t forget to lean on someones shoulder and have a good old fashion cry as well. God Bless You All ! Jeff
Kris: I see you have surgery scheduled for your husband already. I did find my business card for Dr. Nagorney. Here is his infor if you choose or want to use it. His Tel: 507-284-2644, Fax:507-284-5196, E-mail:nargorney.david@mayo.edu
You can tell him a former patient referred him to you. He has always responded to my e-mails. I typed my full Ct results to him and got his opinion just a couple months ago about possible surgical resection again but beings it had spread to my lungs, he told me it would be a high risk pallative surgery and really wouldn’t reommend it; that it is systemic (cc) and offered to coordinate with chief of Oncology for any novel chemo treatments. Please use this infor as you wish. JeffKris: Just wanted to say that I wish you all the best in the coming of the New Year! Sounds like your Doctor has a plan and is willing to put action to his words. I would also like to add that some diet change is helpful. I’ve tried a lot of different things but the most I’ve found beneficial to me is vitamin Enriched bran flakes with blueberries (fresh or frozen) and or bananas every morning along with 24 ounces (2 tall glasses) of 100% grape juice . I use the Sam’s Choice from WalMart with purple concord grapes. no additives, no red or blue dye, no added sugar. Yes it is pasturized but I feel the nutrients and antioxidants are still suffient. I other wise eat fairly normal just learned to stop pigging -out so much. I feel it is important to keep your system active and moving at all times; at least one good bowel movement a day. I would also recommend clonazepam 1mg before bedtime every night and as needed during the day. It is an anti-anxiety medication the lets your mind and nervous system get the rest and sleep you need. I believe this has helped me because when your brain is over active it causes adrenaline system to kick in and starts to throw your whole body chemistry out of wack. Well, I’m not a doctor just passing along what has worked for me. We all know that each of use will respond in different ways but trying to keep a cool relaxed karma is so important i think. I listen to relaxtion/healing moods CDs almost daily when taking a nap or when going to bed. I know my family thinks I’m bonkers but hey, if I feel it helps me give a whirl I say. Best Wish to you and your Family for a Happy and Hopefilled New Year! I’m sure everyone on this web site has sent you all a prayer of support your way. I know I have! Take care, Jeff
Hi Kris: Sorry to hear about your Husband. I had my surgery at the Mayo Clinic in Rochester, MN. Dr. David Nagorney is the professor of surgey (gastrointestinal). He performed resection of my left lobe of liver and removed my galbladder. The chief of Oncology I don’t know his name but you can type in your search mayo clinic cancer and it will take you to site for information. All the other cancer centers just monitored me by way of CT’s. I can tell you that they all coordinate with Mayo’s Chief of oncology as for as any novel treatments. I didn’t start trying any treatments until about 2 years ago thruogh a VA hospital here in Kansas. I had surgery back in March 1999. Had reocurrence to the liver and both lungs. So I just followed it and kept on working until like I said about 2 years ago. It was a personal decsion I struggled with after doing some research. If the chemo treatments are going to work they’ll work later as well as sooner. Although others feel sooner is better. It depends on wheter the cc is low grade slow growing or high grade fast growing. I didn’t do any treatments until size got to be 5.8x 6.1 CM and the few nodules on my lungs went over 1.2 CMs. It was a quality vs quanity for myself. I will be starting a new regimen the 8th of January , maybe all depends on the CT scan I have done on the 4th. My personal experience is once chemo treatments are started your immune system becomes extremely vunerable. I’ll stop rambling and say their are several great surgeons, the thing is how much has it spread to other areas and if surgery is an option vs starting chemo. Again, sorry to hear the bad news about your Husband I was diagnosed at age 43. March 2007 will be 8 years living and fighting this CC. I hope to surpass that date only time will tell. Positive thinking is a powerful tool that only last for so long though. My prayers and thoughts go out to you and your husband. If I can answer any question that may be on your mind feel free to do so. I’v kinda seen,and read most all about cc and know there are quacks out there as well with so called miracle cures. God is the only miracle worker in my eyes. Be prepared and advocate strongly. Jeff
Saw my regular oncologist today. He poked and prodded on my liver and could not get any pain out of me, so he thinks the 3D conformal radiation did some good. CT scan and blood work next week and then he wants to try Oxaliplatin and pill form of Xeloda the week after. He said normally this regimen is used on colon and renal type cancers but has been showing promising results with CC. Talked with Nurse about it and she said they were using on a patient currently and getting good reponse. I’ve read the different results people have had on the site showing some with better response than others and then stopped working, etc. Well, I decided I will give it a whirl. We’ll see how it responds on me. Just another tid bit; while sitting in his office he recieved a call from some chief of oncology at some major hospital and the overall conversation was about some pharmicutical company trying to get their hospitals to try a new chemo drug except it wasn’t new at all, just another name in which they already had the generic form of the same thing. I heard my Oncologist make the comment can you believe it, you know those companies will do anything to sell their drugs. I’ve always felt that way about many companies and products. At the same time it made me feel good that my Oncolgist wasn’t having the wool pulled over his eyes and he has a genuine concern and knowledge to support his patients. Well if anyone has anything infor , good or bad about this regimen of tx please let me know. Having already used carboplatin I’m aware of the nueropathy and not looking forward to it at all. I’ll still have to keep my nutritional side rolling along. Got to go! Keep on trucking everyone!!! JeffG
Had follow up with radiation oncologist yesterday. shook my hand and said sorry I wish I could have done more for you. 3D conformal radiation did nothing for me. It did not reduce any discomfort or pain of the liver or neck area; still compression going on some where. Will go see regular oncologist tomorrow morning and discuss other options if any. I’m thinking of going 100% natural diet unless maybe steriodal immuno therapy is an option. I’m pretty set on not doing anymore ancient chemo drugs as I’ve felt felt great since being off chemo other than the discomfort when not taking pain meds. We’ll see what tomorrow brings. Cherrio for now. Jeff
Alison: My sincere condolences to you and your family. I have a tumor about the same size. Will finish 3D conformal radiation tomorrow but it will be 4-6 weeks before I know if any positive effect. Mean-while it is back to my regular Oncologist to try something else. May God provide you the strength during this difficult time. Jefff G.
Mels,
This CC reacts differently with different people. I have made it over the the 7 year mark since being diagnosed. I decided no treatment at first, then 2 years of chemo and now doing 3-D IMRT. #1 surgical resection if possible, #2 Chemotherapy with it’s side effects, #3 Radiation treatments to shrink and hopefully kill the cancerous cells without doing to much damge to the good cells. Looking back I’m at the stage of where most would probally throw up their hands, but I’m not quite ready for that yet. I’m hoping the radiation will shrink and kill the liver tumor and the multiple nodules in my lungs stay stable or slow growing. I will most likely go back to Chemotherapy after radiation. This appears to be the pattern for most as their has been some success stories. For the majority it’s slow and torturing and other it’s fast spreading and furious. The platin drugs definitley cause neuropathy. Again it’s different on everyone. I have permanent nerve damage without a doubt. But I can still function just fine. When ever I feel the pain and tingling I go to a different place and try to ignore it by doing something else and moving around. Sometimes it works and then times it don’t. It’s like carpel tunnel syndrome I had on my left wrist avoid hot and cold. But with this Chemo it’s different as it can act up irregardless of temp. Lack of movement I found bothers me. Moving around I feel great then after I wind down it really bothers for a while. Dr. prescribed pain meds is where I’m also at. Mels, Please forgive me for being so direct and to the point, but your younger Bro should’nt have to go through this . None of us should. Be strong and don’t give up the battle as there has been Like I said some success stories. There has also many who have been battling for years. God’s Speed to your brother and you. JeffDear Rosemary,
May God live within your heart. Stepping up as the caretaker for your Mom is the most loving and caring thing a daughter can do for their parent. Please take care of yourself and asked for help when you need it. I’m sure your Mom has gained incredible wisdom during her life and will know when it is time to make her journey to our heavenly home. I’m also sure God will give you the strength to know when it is time to let your Mom know that it’s okay and she can rest peacefully if she wants to. My prayers go out to you all. Don’t ever be in doubt, If I did not have this CC I would be doing the same thing with my Mom.
Again God Bless You , Your Mom, and All of your family.Barbara,
I wasn’t able to find Cindy’s history on this site but suggest trying to raise the head of her bed 3-4 inches for possibility of relief due to NERD. Nerd can go undetected up to 3 months before becoming GERD. Go to pub med for explanation.
Also, Look up overreactiive immune system — can be caused by chemo which can cause persistent cough.
Also anxiety, stress, could be causing due to nerve reaction . Has she been prescribed anything for anxiety. like clonzapam maybe. It could be anxiety attacks. Nerves could be throwing her equallibrium out of balance which could cause cough, nausea, and followed by vomiting.
Sorry, She is having so much difficulty. I start radiation treatments of my liver tomorrow so I imagine I’ll be doing some coughing in a few days. I got my fingers crossed that it won’t be that harsh though, we’ll see.
Hope you find something to help cindy’s cough.
God Bless
Jeff
Hi Amilcar,
I would be getting a second opinion if the Doctors stated they were not sure. I have never heard of brushing biopsy but I’m not a doctor either. My CC started in the liver or the galbladder. It was seen on scan on the liver but during surgery it was on my balbladder as well. When it mets to the lungs I had an endoscopic biopsy to determine type of cancer even though I had already been diagnosed with cc. My lungs results were called adenocarcinoma which goes synonomous with cc, heptocelluar, and bile duct. It is possible to have cancer of an unknow origin.
Ask questions and strongly advocate. To me I would think they would have done a tissuse biopsy in a manner where they got a large enough tissue sample to properly diagnosis for sure. I know my surgeon said if he could not get enough tissue endoscopically he would have to open me up to do so. Check it out ask some more questions.Jeff
Hi Anna,
My name is Jeff and I have CC. I also Had a liver resection and cc returned to liver and both of my lungs. I’ve tried about everything including 4 different regimens of chemo. I have been pushing on with this cc since 1999. I have had 4 different oncologist that gave the same prognosis of no cure just treatment to try and slow progression. I’m at the point of Radiation treatment for my liver. Hope to start this week. Is your Father-in-law’s cc only in the liver and not seen anywhere else? He might look into cyberknife radiation treatments. That was what I was going for but my enhanced mass is over 5 cm ,so they’ll willing to try regular radiation instead. There is so much infor out there but different therapies work differently on everyone it seems anyway. Here is a web site that I just found that spells it out for people fighting this cc. (theoncologist.alphamedpress.org) Novel cancer trials is an option which I continue to keep an eye out for as if this radiation doesn’t do anything for me, I will have played all my cards except for trials and to keep doing mind and body /visualization healing. Anna, the main thing is to keep positve attitude all the way, as I do believe in miracles. I’m sorry your Father-in-Law’s cc has returned. I hope he is discussing with his Oncologist and surgeon. They may say surgery is not an option because of multiple locations on his liver. Tell your Father-in law to keep his chin up but don’t waste his money on quackery cures , check out completely as there are many web sites out there that promise the world just to sell an unproven product. God’s Speed !!! Jeff
