maryanne80
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tanoland,
My husband Joe will be starting on the same two drugs in about a week if his bilirubin comes down a bit more. We don’t know if the xeloda will be covered by Medicare because it is oral and wish we didnt’ have to worry about expenses. We spent so much on alternative last year and are still in heavy debt but I won’t let that stop us from fighting this. He now has mets to his spleen and lymph nodes in his abdomen as well as large liver tumors and multiple lung tumors. The amazing thing is as his bilirubin drops, his strength is coming back slowly and he has no pain and no queasiness. We thank God for that. Our oncologist tells us that he should tolerate these two drugs really well so we have to wait and see. He sure doesn’t want to lost any more weight. Boost is really good and he will drink that between meals. Best of luck and know you are in our prayers each day. Mary AnneThanks for your answers. Jeff, Joe never served in the military becasue he had a heart murmur from Rheumatic Fever as a kid. So vets is out. The oncologist said the IV cehmo would be covered but probably not the xeloda. Has anyone on Medicare been on xeloda and was it covered? We have checked with Walgreens and joined their no insurance discount plan but now they think we can’t be on that if we have Medicare because both are federally funded and one would cancel out the other. We do not have the Medicare prescription coverage. Xeloda is expensive but not nearly as bad as the IPT treatments were.
Any other suggestions would be appreciated. Thanks so much. Mary AnneCharlene,
Great news for you and John. We are so anxious to start chemo on Joe and just waiting for the bilirubin to come down a little more. He will do xeloda and Gemcitibine. Praise God for answered prayer. Mary AnneMatt and Val,
Will be praying for you that God will give you strength and patience as you fight this disease, also some peace would be nice. Mary AnneHi Fran,
So sorry to hear of your loss. Will keep you in my prayers and know that you will have great memories for company. Your grandchildren will give you the strength to go on. God bLess Mary AnneWe went to Mayo for a second opinion about 18 months ago and we were very impressed with how organized they were. Joe was already Stage 4 so there was not talk of a transplant but the appointments were set up ahead of time and we went from one department to the other at the scheduled times and finished with the oncologist who had all the results and gave us our options. We only saw the fellow, not the actual oncologist but he conferred with him. Since I took my nurses training there many years ago it was different being on the patient side but I was very impressed. We did have to sign a form that said if insurance didn’t cover the tests, we were liable but for the first time I ever saw, they had the prices of the tests right on the page. Medicare did cover them so that wasn’t a problem. I wish you good luck and hope you have a good experience. mary Anne
Hi Charlene,
I am also a caregiver – otherwise known as a co-survivor and I really think that is true. I go to a support group for patients and cargivers with metastatic disease. It is at Wellness House in Burr Ridge and is totally free – sopported by grants. Joe went with me the first time but didn’t think he needed it. I have continued to go. They meet once a week and I have learned a lot from listening to others and how they are batttling cancer,. Of course no one else has cc but they are all stage 4 of something.
I also get frustated when Joe gets a queasy stomach and I ask him if he has taken anything and he says no. I think sometimes they just want some sympathy. I pray everyday for compassion and strength. I am a nurse so I am aware of what can happen and I also went into this profession because I like caring for people but when it is day after day for 20 months (even tho he wasn’t really sick until last two months) it is draining. I had a week in Boniare when he went home and I stayed there hoping he would come back. The break from the everyday presence of watching what the disease was doing was helpful but then I felt guilty because I wasn’t with him when he was so sick. I just have to give it over to God each day and start fresh. I am so glad for this website and for the caregivers who are honest. Even my kids are saying we kind of got in denial because he did so well for so long. We have a daughter who is almost 40 and Joe’s fondest wish is to walk her down the aisle. She has the man she wants to marry but he isn’t quite ready yet. I don’t want her to feel pressured to rush this so Joe will be around. We just don’t know what is coming up. He is just about to start conventional chemo for the first time in a few weeks when his bilirubin comes down a little more. Scary times. I don’t know how people cope without a God to go to. Thanks for all your support and Charlene, hang in there. Each day is different and maybe tomorrow will bring you some encouragement and grace to get through the day. God Bless Mary AnneHi Barb,
Joe wa having that problem of vomiting undigested food when he was so jaundiced last month. He started on Reglan which relieved the full feeling after he ate and stopped the vomiting. Now the jaundice is going down also but after you have the test if you aren’t blocked, maybe this would help. The doctor ordered it 4 times a day but then he wa having too many bowel movements so he cut it down to twice a day. It seems tomove things along through the GI tract. I am also a nurse and your are right about it being a blessing and a curse. You know what to do but you also know all the things that can go wrong. You are doing a great job with Luis. Hope all goes well with your test. Mary AnneSo sorry to hear the troubles you a going through. Wehn you mentioned Ensure you didin’t say if he liked it. I just started Joe on Boost in between meals because he lost so much weight in a short time. The chocolate flavor is really good. I hope by now the bowel situation is resolved. We have had to resort to enemas once in awhile if Joe got really blocked. No one can feel good in that situation. Praying for you that you get some good advice and that you and Bob can talk about the situation openly. Mary Anne
Hi Michele,
So sorry to hear about Tom. It sounds like the complications shortenend what time you should have had. I will pray for you in this hard time. Joe and I are married 43 years and he has just gotten into real trouble with jaundice and catheters etc. His spirits are down and althgough I don’t think this is the end, if he decides to give up, we will lose the battle. Please stay on the site and gain support and a place to vent from all the wonderful people here. I am only a caregiver. I don’t know how the actual cc patients visit here and support everyone else. Take care and God Bless Mary AnneCharlene,
My husband Joe just had an external catheter put in Friday. It is not bad to deal with but he has some discomfort from the procedure. It is amazing to see how much bile comes out of your system in one day. No wonder he wa jaundiced with all that backing up in your system. We hear that metal stents mayb e down the road. We have some choices to make. Tuesday they will go back in and try and get through the blockage and make it an internal catheter to his intestines. We pray this will work. I will pray for you also. Mary AnneHi Heather,
Joe lost about 10 pounds in the last month and I think it was the jaundice that took his appetite away. He has been so careful about what he ate, no meat, sugar, white flour mostly vegetarian for almost two years and now I just want him to gain his strength back. I just try to give him what appeals and small servings. He doesn’t eat much at once and he used to snack but now he just doesn’t seem hungry. The queasiness he has lived with most of the time since he was diagnosed in Juy 06 seems to be gone so that is great. We are also doing lo fat becasue when he ate a high fat meal, he got really sick twice. Gatorade seems to go down well and fresh fruit. Eveyone’s tastes are so different. I wish you luck in your journey and know I pray for all cc patients and their caregivers. This is a tough road. We have had it easy until a few weeks ago. You have to walk in the shoes to know what it is like. God Bless Mary AnneLisa,
How great for you. I didn’t even know they could usse intestine for replacement of bile duct. I will be praying for you in the upcoming days that all goes well and God will be with you as you recover from this cancer. Mary AnneHi Friends,
Well the procedure Friday was successful partly as you may have read on the blog. Since probably everyone doesn’t read the blogs I will tell you what went on. They were able to pass a catheter into the dilated bile duct but were not able to get it through to the intestines. They feel with a few days of the bile draining externally into a bag the inflammation will go down and they will be able to get through when they go back in on Tuesday. The people at the hospital were so compassionate, we were very impressed. An interventional radiologist Dr. Molliere did the procedure. We have made an appointment with an oncologist for March 11th but we are stil unsure if we want to go with conventional chemo. Hard decisions. Quality of life or length of life. I have to talk to in internist tomorrow and see what he feels the MRI showed. I don’t know if we are dealing with a serious problem or a terminal condition. I need to know for our kids sake too. Joe is still very weak and just sits in in recliner all day. I know his liver has to rest and rcover from the jaundice but it is hard to watch him so weak. I so appreciate this website to share with people going through the same thing. Thanks for your support. Mary AnneHi Michele,
Sor sorry to hear about Tom. making the decision on whether to keep going is so tough. My husband Joe who is almost 68 has been doing alternative til now but now he has severe jaundice which they are going to try and relieve today. The problem is, that is only the symptom. The tumors are growing and he never wanted regular chemo because of the side effects. Now we have to decide is it worth it to try conventional or stick with IPT which gives him quality but maybe he is getting immune to the treatments. Like you we have to take one day at a time and ask for God’s wisdom and strength in what to do next. Joe is not in any pain which is a blessing and he also doesn’t have any itching which would be the second worst thing for him. I will pray for you and Tom today as I sit in the waiting room at the hospital. I am so glad for this website where we can share our hearts without burdening our kids and friends. I try to be strong but my dreams are filled with sobbing and falling apart.
We can all hang in there together and know we are not alone in this fight. God bless you and Tom. Mary Anne
