jeffg
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Candy …. You cant’ make him better. The doctors will have to do that. But you can surely find out the full story and advocate fully on his behalf. Is there anyone availble close by that can maybe stay with him or possible arrange for nursing care at home. He really needs to be watch closely until they decide on what treatment is going to be done. Being down and out with this type of cancer and the complications of stents and drain tubes can be a nightmare if things don’t work as ment to. He should know not to heasitate to call the ambulance either if his temp spikes or there is uncontrolable pain. Your right cindy this is an ugly situation and he will not be able to do it alone that is for sure. I am so sorry this is all happening. I commend you for getting him to the hospital. Living so far away makes it difficult for you with out a doubt. Bless your heart Cindy for doing what you can, although you can’t cure him you can advocate and hopefully he’ll get on the right track with the doctors. Don’t hesitate to post any questions you may have as many on this site will give advise. Take care of yourself as well.
God Bless and Best Wishes!
Jeff G.Jane … Chrissy is correct . 3 times daily until you are going normal at least once every three days. But ….. start cutting back and adjust how many times you take. I have managed to cut back to two capsules every other day. You just have to adjust accordingly that works for you. Going two three times a day is not good either. you will loose all your nutrients, ect.
God Bless,
Jeff G.Jane, Sorry your sister is having so much pain. I just wanted to add that she might want to try over the counter stool softener(not laxative) it really helps when your on pain medication which will with out a doubt cause digestion problems problems and constipation. It is vary mild. That pain I don’t know could be sluggish bowel and backup. It’s improtant to keep track of bowel movement.
Bless Ya!
Jeff G.Chrissy, Life is great. Thats why all of us on this site would like to see the miracle cure or at least extend our lives to be with our loved ones. Like I mentioned you have been through quite an ordeal. It has taken a toll on you physically and mentally and has scared you of the future. Chrissy don’t let this disease hold you captive and suppress you happiness and love of life. It’s understandable for Chucks to get angry and not wanting to talk about it. He himself is uncertain of his feelings and wants to do the manly thing and push on and be the strong. It’s normal not to want to talk about the scary posibility of the disease returning. I would still recommend attending some support groups or counseling to help you work through your fellings. These support groups are people just like you who are willing to share and learn coping skills. You can’t do it alone chrissy or it’ll eat away at you. These support groups are very friendly and supportive and don’t cost nothing. You are an amazing young lady and I’m sure the rock of Chucks life. Try a support group and give chucks time to process the reality of all this and time to regain some focus of life himself. A good support group would be great for him as well, but he has to be ready in his own mind. At this point and time he may not feel he needs any help. Chrissy having this disease and living with it can be quite a struggle on the human mind. Emotiionally you need an outlet and be able to express. I consider a life as a gift and isn’t really that bad. I say that today despite my disease and am going to live life to the fullest even if it is just for a little while or hopefully a long while. I wish You and Chuck only the best!
God Bless!
Jeff G.Jamie…. get that second opinion. Just because it has reached the liver and lymph nodes doesn’t automatically disquailfy her for a resection. Chemo is a choice to make. It can work on some people then have no effect for others. It could work for your Mom for a while then peak(stop working) and that is when they might try something else. Pallitive radiation has been known to stop CC growth but a lot of doctors shy away from doing it to the liver due to chance of to much exposure could kill the liver comletely. Jamie Gemcitibine is the first line of chemo normally tried for this type cancer. The outcomes are so different for everyone, so hard decisions to make will be coming your way. Take time to discuss with your Mom what she wants as some people don’t want chemo and focus on quality VS quanity. Wish your Mom and you the best at Mayo.
God Bless,
Jeff G.Barb…Just a suggestion … ask why not a referral to radiologist oncologist. Although my radiation treatments were considered pallitive it stopped the pain and tumors from growing on my liver and S-1 area with on once a day for 15 days. Especially if your liver tumors are of low density it could possibally knock out that CC growth like mine. IMRT 3-D conformal I know to much radiation is not good for you, but that will be what I push for on two areas that I’m watching at the moment. If they say they don’t ever do radiation to the liver… well I did on approximately 1/2 of my one and only remaining lobe. In fact I’m hoping this taxotere is doing me good and not disturbing or reactivating my liver tumor. Stay strong and try using the unleashed power of your mind to shrink them tumors like the wicked Witch of the West.
God Bless,
JeffHi carol, Beano is an over the counter med that helps relieve bloating and gas. Is charlie have internal or external radiation. I know I mentioned before , I have had radiation twice now with what I consider very good results. It was external 3-D comformal. The beams of radiation go in small and expand to cover the tumor area only. The machine moved around under and above and sideways to ensure the tumor was completely zapped from every angle with 4-5 little zaps. I only did it for 15 days each time. infact you are pre scan measured and marked so each day only takes about 5 minutes total with the type of radiarion treatment I had. That was over a year ago and I have not had any problems since. In fact I’m praying that the new chemo regimen doesn’t undo the good the radiation did for my liver. There has been no growth since in areas zapped; liver and spinal area. This regimen now is to try and put a stop to a tumor growing in the lungs. I had only drowsiness and slight itching both times. If at any time you really feel pain or or the out side of the body starts really getting sunburn like , I would be asking questions immediately. It really depends on how much is given and for how long also the person. I just know from other patients that I chatted with each morning radiation is not that bad pain wise. Only one person out of about 12 had any complaints. Charlie I wish and pray you have outstanding results from this treatment. Remember advocation continues during treattment. If you feel your body has been zapped enough at any given point , ask to talk with the Radiologist. Thumbs up Charlie ! give a whirl. Carol it appears my cough has finally stopped. Thank God my stomach muscles were begining to hurt. Even on the pain breakthrough meds .
Prayer’s and Thinging of You Both,
Jeff G.carol58 wrote:Hi Jeff, I’m so excited for you going to Hawaii. I think everyone here will enjoy it vicariously through you and your wife. Please let us know all about it.Charlie starts 3,000 mg oral Xeloda and radiation on Mon. for 5 weeks. The radiation is all new territory for him. We’ve already heard bad stories of radiation and food intake…were told to get Beano. Guess I’ve got some more research to do.
Hope your coughing spells stop. You’re in our prayers as always.
Carol
Dear Robyn, My deepest sympathy and condolences. Yes when your up to it I would like to know what happened at the end, especially concerning hospice not being of any help. Whenever my time comes I want to make it as easy as possible for my wife if that is possible.
God Bless,
Jeff G.Hey Peter, Hows it going buddy? How are those majestic vermont mountains? I used to love driving up through that area. Although some of those mountain sides use give me a tickle feeling at times. I would grip on to the steering wheel until my knuckles turned blue Ha! Yes, my CA-19 dropped from 28 to 24 and now 21 within the last 41/2 months. I had some pemmican last night. Ate the whole bag! Found a recipe to make it myself. Store bought is high priced, high in protien, but awfully high in sodium. So I’m going to try making a batch with less sodium of course.
Hula Hula! I can see me wearing a grass skirt. Ha! Yep I agree with falling of the deep end! My wife says there not doubt in her mind. Ha!
Jeff G.Chrissy…. Your feelings are quite natural. Everyone associated with this disease goes through all the what if emotions. Yes your a young couple just starting out. You have been through quite an experience to say the least. I’m sure you have been chucks rock during these tough times. Cancer is scary no matter how you look at it. This coming March 16th will be my 9th year fighting this horrible disease. During that time the love of my life has been right by my side thick and thin. She and my kids and grandkids have been my rock. I have sold three homes and bought two and moved across the US twice and started two new jobs in these nine years. As far as I’m concerned still going strong. We all know (family) that the day of my departure could be tomorrow or years from now. I insisted life goes on regardless. We will not be held captive by this cruel disease. Chrissy, I guess we all have different thresholds of tolerance in life. I’m sure you feel if you told chucks what your thinking would crush his will power to push on. I also sense that although you love him dearly, deep down you want more certainly out of life and your future. Well, Chrissy there is no certainy in life except for birth and death. Except between these events is a realm of hope , love, and the building of togetherness. You know although I’ve been fighting this disease for almost nine years, it has not been all consumable of the disease as I already mentioned. I guess I would be considered the lucky one for hanging in there for so long. I’m greatful to the lord for letting it happen but it has not been a bed of roses and I often wonder why me. Chrissy, I feel like I’m giving you a fatherly lecture and shouldn’t be rambling like this. I have always felt honesty is the best policy, especially with emotions. I would talk with chucks and let him know your feelings and how scared you are. Maybe you can visit a local support group and share your feelings with them before hand. Hopefully they can share some experiences and help you with your struggle of negative thoughts. It’s not easy giving any advise of this nature as I don’t personally know either of you. Maybe you have seen another side of chucks you didn’t know that exisited. Chrissy, again I would get some one on one or group counseling to search out your true feelings for chucks and the future. Two things I will say, is true love can provide guidance but is it the kind of love that will see you through. Also, living a life with uncertainy of commitment and openingness will without a doubt lead to misery. I hope you can work this situation out and make the decision you feel is right. I know if I was Chucks I would want to know how you felt and not start off togetherness with faslehood. Human emotions can be quite a complicated arena Chrissy; so don’t feel guilt or your a bad person. Just work it through hopefully with Chucks and I’m sure you both will come to the right conclusion as to what the future holds for your relationship.
God Bless You Both,
Jeff G.I’m going to go get some beef jerky for snacking then. Always did like the stuff. The marrow must come from the grizzle and fat from off the bone I guess. I fancy some anyway.
Thanks Charlene,
JeffVarun, I’m sorry the whipple procedure deals with the pancreas not the liver and upper ducts. It sounds as you have really advocated for your mom and treatment and got plenty of opinions. I’m sending you a prayer of support my friend ! I’ll or I should say we here on this site will be wishing for a positive outcome.
God Bless,
Jeff G.Varun…. Sorry to hear about your Mom. It sounds like a very complicated case. I don’t know anything about the medical system in India so I don’t think I can be of much help. I would try to get a second opinion if possible to maybe see if another specialist can recommend something different. The stents can always be a problem with blockage and infections. Would keep close eye for chills and fever and not hesitate to get checked out. Some people have had external drains in place of stents. It’s an individual choice of how far your Mom wants to go. Sometimes chemo and or radiation will cause tumor shrinkage enough for stents to be tried. You said your Mom has a2x2 CM I really wonder why it is not resectable, again I guess that depends on the location. I would highly recommend another opinion. Has she had the whipple procedure yet? Varun, I wish you and your Mom the best. Chemo is not advisable if no biopsy confuses me; as she was already diagnosed. How did they determine that?
God Bless,
Jeff G. Talk with Oncologist, Radio Oncologist, and Gastrointestnal Surgeon not just one.Hi Laura… Your question about diabeties and chemo; I have my chemo with a couple guys who I know have diabeties. So I know they do it. I’m sure they have to watch there vitals a little closer. The same with the guy with high blood pressure and heart medication. You certainly don’t disqualify for chemo because of other conditions. You mentioned 6CM tumor. Have you ever discussed zapping it with radiation. I have a 6.4CM on the remaining lobe of my liver and had it zapped about a year ago due to pain. It has not grown or caused me pain since. 3-D conformal Radiation is what I had done. Some doctors will say no way others say give a go depending on if they can encompass it and( location to ducts). A Radiologist Oncologist can take pliminary scans to determine if feasible. Some doctors worry to much radiation will kill the liver. I told them that’s why you don’t do so much but just a little. Well it worked on me and I’m not advising but only stating what I was willing to do and did. Oh that 6.4 tumor is 6.2 now not much of a difference. Probally none but I take what I can get.
God BlessYou and your Dad!
Jeff G.
