jeffg
Forum Replies Created
-
Posts
-
Belle… I had a total lobe of my liver removed and gallbladder as well. The pain can be controlled They had me up and walking in three days. Discharged in 8 days. Recovery took me about 3 months for me to be back to work full time. This is very individual and ideal. Everyone is different and overall health and age does make a difference. Some people have gone home within 7days. The chance of infection is there as with any surgery. My self Ideveloped an infection that set me back a week almost two. This was after I got home. It is monitored very closely. And you have to monitor your self with regular temp taking and watching out for chills or sweats and don’t hesitate to be a pest. I went home with a drain tube and bag to help prevent infection but my tube got all twisted and would not work properly which most likely caused the infection. Others have had no problem at all. March 16th this year will be nine years, so the 3-4 years you were told definitely can be longer. Each person and case is different. This is an excellent site to get information and the members will tell you like it is as far as experiences of their own and what they have tried as adjuvant therapy and so on. From what I have read and posts from others Sloan kettering is abn excellent facility and very knowledgeable of this type cancer. I know you said any recently but I had to to share and make a point the satistics have been beaten time again. Positive attitude, advocate when you know something else should be done, and don’t hesitate to get a second opinion if you feel it is needed. The fact that you have been told it’s resectable is great news for this community. All the best to you and your Sister.
God Bless and prayers for a speedy recovery! Please keep in touch and don’t hesitate to ask any questions. I’m sure others will respond as well.
Jeff G.rjoday……. I have been taking milk thistle once a day. A couple others on this site take as well. As far as working or successful results, my liver tumor remains stable is all I can say. I surely don’t think it has done any harm.
Take Care!
Jeff G.Sue …. I am so happy for you. When you mentioned the incision I had flash backs. I remembered showing evryone who wanted to see. My incision went from the breast bone down to my belly button and then they did a detour around my belly button and a few inches more down. I meant to ask why but never did. Ha! Enjoy what sounds to be a wonderful cruise! I will find out tomorrow if I should go on our Hawaii vacation or not. I already got a sneak peak at my Ct Scan and all appears about the same (stable as they put it) with exception of the lungs showed an isolated touch of pnuemonia. Already did a course of antibiotics. May do another if not completey cleared. Sorry, didn’t mean to ramble. I can just see you and your husband cruising the open waters, lounging on deck, on a warm and beautiful moon lit night. Keep things rolling girl and always think positive thoughts.
Bon voyage ! (sp) Ha!
Jeff G.Hi Irene, Sorry to hear your husband is having such discomfort. I have been on this medication. It was prescribed for me to to take every 6 hours as needed for nausea while I was doing Chemo. I guess it helps to reduce acid reflux and it also helps your intestines contract and fluxuate to keep things moving. Hope he fells better soon. If things seem to get worse don’t hesitate knocking on your Doctors door. I other words be a pest if you need to be. Also you mentioned constipation and diareaha(sp). The stool softener shouldn’t cause runny stool with one dose. This would tell me he has sufficient bile flowing to do the job. Also remember your bowel habit will be off course for a while and I probally would hold off on stool softener until at least day three. It’s so hard and and arkward not having your regular routine. The best to you both.
God Bless,
Jeff G.Steve… Just my experience… I have had Oxaliplatin, carboplatin, and cisplatin all within the last three years. The platinum drugs wore me out completey. It took at least 3 months to pull my self back up out of the hole. The more she has the more the accumulative effect it will have. I had to reduce the dosage on Oxaliplatin as it was just to harsh for me. Has she had many of these treatments to date? I’m sorry I can’t think of something else other than lots of protien shakes and drinks to build up her electrolytes. If she has already required two units of blood then some dosage change or change type of trearment might be a thought? Wish you guys the best!
God Bless,
Jeff G.Hi Steve…. Ritilan is a brand name stimulant used a lot for depression, and attention deficit disorder with hyper activity. Generic name is Methylphenidate.
Steve, this drug is considered a BLACK BOX drug by the governmentFood and Drug Adminitration. Dangerous side effects: One is to want to sleep continuously. It has many interactions with other drugs. It can cause phsychotic episode and hullucinations you name it.
Steve, there are many other drugs available for depression besides Ritilan. In my opinion, I would be refusing to take. If it is anxiety try clonazepam 1mg before bedtime and as needed during the day. Steve I’m not a Doctor but I know, my son is currently in the hospital because of this medication. Any medication prescribed now a- days should be checked for Black Box labeling by the Food and Drug Administration. Any doctor who says it is safe to use ritilan is has a scew loose in my opinion. I know many medications have side effects but this one has been known to have devastating ones. Please don’t stop them without doctors guidance. Why were they prescribed Steve? I can’t help but think there are better alternatives what ever the reason. I don’t want to scare you, but you should check in to changing to a different drug as soon as possible. Best wishes to Lana and you.
God Bless,
Jeff G.Hi Linda…. I initially thought that was my problem(acid reflux) back in March,1999. I took a very aggresive approach and was on the operating table within 2 weeks. MY CC had already encompassed most of my left lobe and during surgery found on gallbladder as well. Like Stacie mentioned the smaller the better in my book and the sooner DX and have surgey the better. Positive can do attitude is a must. Advocate hard for the best. After surgery also consider or ask about adjuvant therapy. Linda, wish your Dad the best and prayers of support coming your way.
God Bless,
Jeff G.
P.S. Please let us know if you have any questions as things progress. Please click on Cholangiocarcinoma above and then click Major Cancer Centers. We are familar with their reputations.Brenda…It’s okay to feel and have the emotions as you mentioned. We have collectively supported each other through this site. We all have had our moments. My thoughts and prayers are coming your way. I’m glad to hear they caught Scott’s condition so early.
God Bless,
Jeff G.Amilcar, I am so sorry to hear your Dad is loosing ground with this disease so quickly. Prayers of strength are coming your way. You have helped your Dad tremendously just being there for him. You are a true giver and that is what your Dad sees right now.
God Bless,
Jeff G.Amilcar—- Loved your post! Lisa I can only say Dito to what Amilcar wrote. I too have had many guilty feelings of being such a long term survivor and seeing such great people being stricken and taken away by this disease. I often ask why is this disease taking me down so slowly. I then count my blessings and tell myself, this is the way it is meant to be and hopefully each day I still hang around may be a benefit to others in some way. Maybe I’ll recieve a miracle who knows. Don’t feel guilty Lisa; just thank God and cherish the gift of each and every day we have to be with our loved ones. Those who have already left, are no longer suffering and in pain and I Thank God for that also.
God Bless,
Jeff G.Hi Salascrat….. Move or not to move ? I’ve been at our current home for just over 6 years. We don’t plan on moving anymore. This last move was done pretty much for some of the reasons you mentioned in your post. Down sizing and being closer to my immediate family and closer to medical assistance all played a role. The housing market was booming right along when we moved here but right now depending on where you live I would in my opinion be very careful if you decide on moving. I would evaluate the expense, and whatever stay away from Home equity loans if possible; especially any loan that is a variable rate or penalty for early payoff. I guess I need to change track. I’m trying to give financial advice. Bottom line is before moving here we had a ranch style home out in the boondocks 50 minutes from closest hospital and I remember the long and repeated trips I made for scans and surgery and work. So I had 2 years in my dream home of the wilderness. For everyones sake (including me) we gave it up. I look back and say it was the right thing for us to do. Honestly, I would not be here today if we had not moved. Right now I’m 10 minutes away from treatments,ER, scans, etc. I guess you could say I adjusted to suburban living just fine. I will say as much as I don’t want to believe it, I have needed help and have learned to accept it. Thank the lord for giving me the time to make changes. Just this past weekend I had to make a visit to the ER. Pnuemonia (sp) hit me with no notice at all. I”m fine now sitting at home taking my antibiotics and drinking plenty of water. I guess I,m saying I love the security of being close by to someone, even if one day to come it is just to say my goodbyes. I still plan on going on vacation to Hawaii in March. A lot could happen between now and then, but unless I get bed ridden I’m a -going. It’s a hard choice deciding to move, look at the financials and weigh the pro’s and con’s. You ‘ll have your answer come clearer each time you think about it . Wish you and Tom the best.
God Bless,
Jeff G.Chrissy…. Prayers to you and Chucks .I hope corrective surgery goes well !
I myself had to have a big ole hernia repair with a wire mesch put in due to so much chemo. Chucks surgery sounds a little more challenging but I’m sure he’ll do well after all he went through. He sounds like a very strong and determine Young man.
God Bless and Prayers,
Jeff G.Michele- Sorry Tom is having such a bad time. I have tumors om both lungs as well but not having breathing difficulties as of yet. Has scan shown signs of how large the tumors are? His breathing difficulty could be side effect of the chemo google side effects of what chemo name and it will tell you. Some times dosage needs to be reduced. Also , If he is still trying to work, maybe think of applying for SSDI and have insurance coverage thru COBRA. You would have to pay premium to cobra eventually. Plus slowing down a little would help energy to fight. Just type SSDI in search above you can apply right on line. It took me only two weeks for approval and direct deposit for retroactive entiltment to date I had to stop working due to chemo. Also take a peek at article I posted in research today. Might be of interest. I haven’t check out completel yet. Charlene I truley wish you and Tom the best. I really wish I could wave the magic wand.
God Bless You Both!
Jeff G. P.S. I agree with Betty about the lungs. After 3 Plus years of different chemos I’ve personally kept things slowed down or have I ? Where ever I have had radiation the pain stopped and the tumor stopped growing. But with mets so many places Like me I have to be conservative with radiation. Cutting off the blood supply to the the tumors is the key I would say. Pretty hard to do when you have so much mets. I would surely keep radiation in mind. My tumors in lungs are not to big at this time but several there so I may press for lowdose radition pretty soon before they get bigger and see what happens.
