peggyp
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Hi Rob,
You sound like you are a great care giver. I’m sure your wife knows how much your love and care has gotten her through these past six years. My husband was diagnosed a little over 3 years ago with intrahepatic cc. He went through surgery and had 70 percent of his liver along with his right kidney, gallbladder, part of stomach and part of colon removed. He was already Stage IV. After seven months, he had multiple tumors in his liver. His last scans did not look that good but he started back on chemo 8-26-11. He’s on gemzar/cisplatin/avastin. He was supposed to get another treatment last Friday but his counts were too low. They gave him a neulasta shot and will give him avastin this Friday, and hope to give him the gemzar/cisplatin next week if counts are up. He has been in a lot of pain from the neulasta shot and has been very weak and tired since restarting chemo. Yet, he keeps on going. I have to admit that he has been more stronger than me during these 3 years. I pray that your wife will feel better soon; she sounds like a real fighter, and I hope she will rebound and continue to fight this horrible disease. And I know that you will be there fighting for her. Keeping you and your family in my prayers, PeggyP
Hi Danny,
My husband also has Stage IV metastatic intrahepatic CC. He was diagnosed a little over 3 years ago. They originally told us his only chance was surgery as he had a large mass in his liver. When the surgeon went in, he removed 70 percent of John’s liver, his right kidney, part of his colon, gallbladder and some of his stomach. The tumor was the size of a softball and had grown into his kidney, colon and stomach. The surgeon said his kidney had not been functioning for a long time and it was completely shriveled up. He was otherwise in good health and did not have any symptoms other than a pain in his right side. That’s typically the way this cancer works; by the time you present symptoms, it’s already in the late stages. At first, the surgeon was very confident that he had gotten everything, but that wasn’t the case. Six months later, John had multiple tumors throughout his liver. He went through chemo treatment which shrank some at first; but then the doctor gave him a break and the tumors started growing again. After he had an adverse reaction to the chemo, he had to stop. The oncologist started him back on a new chemo on January 4, 2011. This was gemzar/cisplatin/avastin and he went through 11 treatments of this. John developed some bleeding so the doctor took him off the end of May. He just restarted this same treatment plan on Friday as his last scans did not appear to be good. Other than tiredness, John has been able to enjoy life. His appetite is still good and he has maintained his weight. We take each day one day at a time, and pray that God will continue to give him many more days. John’s motto has always been, “it is what it is”, and he has tried to keep a positive attitude throughout everything he’s been through. I think you should pursue any and all options available to you, and tell your mom that there are indeed many people living with CC. Take this time to enjoy every moment you have with your mom as these memories will stay with you forever. I will say a prayer for your family; try to stay strong and positive and keep the faith. Wishing your mom well, PeggyP
Hi Lainy, Marion, Nancy and Gavin,
Yes, we are getting some effects of Irene. This morning during Kaden’s football game, we had three downpours and the wind was really blowing hard. We still enjoyed the game, though. Kaden played almost the whole game; they kept switching him from defense to offense. He loves sports, especially anything that has to do with a ball. He has been playing soccer, baseball, and basketball since he was 4. He had to wait until he was 8 before he could play football. Golf is also becoming popular with him. I’m just so glad that John is getting to enjoy these experiences with him. It has been raining steady and hard since about 5:00 today, plus the wind has gotten stronger. We are planning a trip to Nags Head, NC in October if John is up to it. Kaden loves to fish and the kids will be out of school on a Friday and Monday so we thought it would be a nice short trip for all of us. I saw on the news where Nags Head was getting hit pretty hard by Irene so I hope the fishing pier will still be there if we get to go. Thanks to all of you for being so kind and encouraging. It really means a lot to me, Peggy
Hi Everyone,
John started back on chemo today. He is back on the gemzar/cisplatin/avastin. He was at the hospital about 7 hours today because his counts were pretty low and they wanted to give him the chemo slowly. They hope to be able to do it again next Friday, then follow up with a Neulasta shot so he will be able to keep the cycle going. Of course, we’ve been through this before and most times his counts drop way too low to get the next scheduled treatment but maybe this time it will be different. He was very tired when he got home and went to bed fairly early. Our grandson who is 8 has his first midget football game tomorrow and I don’t think anything could keep John from seeing that. Oh, we had an earthquake in Virginia the other day and our house was really shaking. It was such a strange thing and only 60 miles from where we live. I’m so glad I found this site; it’s full of so much information. PeggyP
Hi Nancy,
I hope that everything will be fine with Doug’s scan and that he starts feeling better soon. You both will be in my prayers. Peggy
Hi Janet,
I also live in Virginia. My husband was diagnosed a little over 3 years ago with intrahepatic CC. He, too, had no symptoms except a small pain in his right side. After going to his GP, she sent him for a CT scan which came back showing that he had a huge mass in his liver. Within 3 weeks time, after many tests and biopsies, he was operated on at UVA. His surgeon felt he had gotten everything but that wasn’t the case. Within 7 months he had multiple tumors. John has done remarkably well considering all he went through. He does tire very easily; yet, he continues to do as much as he can on his own. Friday, he will start another cycle of chemo as his last scans showed more tumors plus some activity in his lungs and lymphnodes. John was Stage IV when diagnosed so we just thank God for every day that he gets. I hope your mom does well; I believe attitude plays a large part in this. John has always had a good attitude and tries to stay upbeat. He doesn’t like to be around negative people. You will learn a lot from this web site and some of the stories are amazing. Just hang in there for your mom and may God bless each of you. Peggy
Hi Appreciate Help,
My husband was on gemzar/cisplatin from January 4, 2011 until May 23, 2011. He had 11 treatments during that time. He was told that he was going to have a lot of side effects, but he didn’t experience any other than his counts going very low and being very tired. He was supposed to get chemo once a week for two weeks and then be off a week. This usually didn’t work out because of his low counts. He would have to get a shot of neulasta to bring his counts back up and he was also taking avastin. He had previously taken the 5FU and another drug, but had a severe reaction when he was going through his 17th cycle. He had a lot more side effects with that than he did with the gemzar/cisplatin. Actually, he will be starting chemo again next Friday with the gemzar/cisplatin. His counts have been very low and he hasn’t felt that good this week, so we’ll see. I wish your husband well because we have been fighting this for a little over 3 years now. John never complains; he is so strong–I wish I had his strength. Keep us informed on how your husband does. Take care, PeggyP
Dave,
My condolences to you and your family. I lost my oldest sister when she was 51; we were very close, too. She never complained either. Try to remember all the good times you shared with Peter; I’m sure he’ll be watching over you. You will be in my prayers.
PeggyP
Hi PCL1029,
We live in a small city in Virginia. We are not far from the University of Virginia Hospital which is where John had his surgery. We see a local oncologist who is with the HOPE Center at our local hospital. I believe when John had his first scans after starting the gemzar/cis it showed that some of the tumors had shrunk a little but none had disappeared. The next scans showed that things were pretty much stable. These last scans are the ones that the radiologist didn’t compare to the previous ones so the NP said she would have to review the others before she could tell us anything. I asked for a copy of the report so I could see what it said. That’s when I noticed that it was talking more about nodules in the base of the lungs and denser lymph nodes plus progression of the tumors in the liver which didn’t sound too good to me. John said he was expecting the progression since he had been off chemo for almost 3 months. He doesn’t like to talk about his condition so he doesn’t know I am on this website. If anyone asks him how he is, he always says he’s great or fine, but I know differently. We have been married for almost 36 years so I think I know him pretty well by now. We are raising two of our grandchildren (ages 13 and
and they have completely worn him out over the summer. He loves them so much that I honestly believe that between them, prayers, and God these are the things that are keeping him going. When I read some of the other posts, I feel so blessed that he is still with me. I was with my dad when he died in November from a very aggressive melanoma. I held his hand all night in the hospital and prayed that he wouldn’t have to suffer any more and could go join my mom who had died in June. When the nurse came in that morning, she told me to call somebody to come be with me because she didn’t think he would last much longer. My sister, brother and I were all there when daddy took his last breath and it did appear as if a peace had settled over him. I just pray that John will not have to suffer when the time comes because I love him too much and I don’t think that I will be able to handle it. Well, too much sad talk. Thanks for your concern, PeggyHi Everyone,
The oncologist’s office called today and said he wanted John to start back on chemo next Friday, the 26th. I asked the girl if we would be able to talk with him then about his last scans and she said we weren’t scheduled to see him until the second week in September. They are going to put him back on the gemzar and cisplatin. John seems to be getting more tired each day, yet he continues to do as much as he can. He has gone to run errands now. I don’t have much time because the kids will be getting home from school soon and I will be wrapped up in homework. I would like to welcome the other newcomers and just know that everyone here knows what you’re going through. I lost both of my parents last year within five months of each other and I still find myself thinking about calling them and then I remember they’re gone. I find comfort in knowing that they’re with my oldest sister whom I lost 12 years ago to metastisized breast cancer. I will keep each of you in my prayers. Peggy
Hi PCL1029 and Gavin,
Thanks for your info. John had 11 cycles of the chemo and 9 of the avastin since January 4th. He stopped treatment on May 23rd as the doctor felt he needed a break. We are still waiting to hear from the oncologist about his last scans. I keep praying that all who have this terrible cancer will find some sort of relief. Thanks for caring, Peggy
Thanks to all who have responded so far. John (my husband) is seeing an oncologist, but he was on vacation when we went Friday. The last chemo he was on was cisplatin, gemcitabine and avastin. He tolerated this well with the exception of being very tired. His white counts and platelets were very low so he usually had to get a shot before he could get his next treatment. When he was diagnosed, he was already Stage 4, so the surgeon said that chemo and radiation were not an option. In fact, they told us that if the surgery did not take care of it, we had no other options. After the surgery (the mass was the size of a softball) and the resulting multiple tumors, the oncologist talked with other doctors and that’s when they decided to treat him with the drugs they use to treat metastatic colon cancer. When he had that adverse reaction, that’s when they switched to the cisplatin/gemcitabine/avastin. We just thank God every day for each day that he gives us and hope for the best. I have noticed that there are many more web sites about CC now than when John was first diagnosed. I have asked the oncologist several times about clinical trials but he doesn’t have much to say on the subject. I just want to keep John around for as long as possible. We live on the east coast so John Hopkins would be the closest to us. Thanks again, Peggy
