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UNICORN212's Photo UNICORN212 Posts: 13,257
10/21/16 5:57 P

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My husband just had his 5 year appointment, and unless something pops up, we do not need to go back. He is considered cured.

I know there are a few of you still reading here. I wish you all the best of luck, but I will be leaving the team.

~Nancy


"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 13,257
8/29/16 10:30 P

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I know it is not much of an answer, but everyone is different. They will probably try different options until either one works, or they sadly run out of options. It is not the same thing, but my husband's aunt recently died at nearly 80. She had been battling stage 4 breast cancer for 17 years. They found it, battled it, and thought it was gone. In the late 90's it came back and had spread. Until the last year, she had quality of life - lived alone, drove, shopped, etc. So there is always hope. And medicine keeps advancing. So, do what you can, try to stay positive, and make life the best possible. None of us are guaranteed tomorrow, so make today a good day.

~Nancy


"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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SOVTWALKER's Photo SOVTWALKER Posts: 14,845
8/25/16 11:19 A

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I am sorry the chemo is not working as well as it might. I don't really have any answers for you but I know there are many they can try and hopefully they find one that works. My husband's uncle has colon cancer that spread to his lungs and then to his liver. Fortunately the chemo he is currently on seems to be keeping it in check and other than feeling crappy for a couple of days after each session he is tolerating it fairly well. Good luck to you and your son. I hope they find a chemo that works with minimal side effects.

Anyone who has ever reached a goal started by taking that first step.


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SMIDGON's Photo SMIDGON Posts: 5,521
8/25/16 6:50 A

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I know I have been MIA but son John is not getting better. Next Tuesday he starts on his 3 round of Chemo. Each getting stronger! Today I will be making a 'cheat-sheet' of possible side effects. This is the strongest. Could have skin problems. So much to learn about this round.

I am so concerned!

I know he can stop it at any time. But, do any of you know, can a oncologist or specialist call it off? Its hard to get any info. from even the Cancer Navigator.

He has colon cancer that has progressed to the liver with 3spots. And,free-floating cells in abdominal cavity. As of Monday the spots were slightly larger and some clumps attached to abdominal wall. They feel they are also cancerous.

How far do they let this go?

"All things work together for the good of those who love the Lord, and are called according to His purpose."

Romans 8:28

~+~ Janet


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SOVTWALKER's Photo SOVTWALKER Posts: 14,845
2/7/16 3:18 P

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Thanks for the reply. Yes, I know there are many who survive pancreatic and bile duct cancers. We joined a couple of Facebook groups for people who have this type of cancer and there are several long-term survivors among the group. Unfortunately hardly a day goes by without someone posting about the loss of a loved one. Many of the survivors are dealing with or have dealt with a recurrence but they are still able to go on so I know there is hope.

As for the job, I have more than made up for any time I have spent on the phone so I won't offer to come in early. I do stay a few minutes late sometimes if I am in the middle of doing something that I think I can finish with just a few extra minutes. My supervisor knows about all the times I have worked through breaks or part of my lunch but somehow that doesn't count in her mind. I will just be extra careful not to say anything that someone else might be offended by and I will manage to tolerate the job- at least it's only for another two years.

We do try to watch carbs and sugar to a certain extent since he is diabetic. For a while he was not able to eat a lot of things because they didn't digest well, but now that the bowel obstruction has been taken care of he can eat most things so we have started to add back in some more high-fiber foods, which he had to avoid for a while.

Anyone who has ever reached a goal started by taking that first step.


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UNICORN212's Photo UNICORN212 Posts: 13,257
2/7/16 2:28 P

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Bev - I am sorry you are in that situation. Dealing with a husband with cancer is hard enough. Too bad your boss and co-workers do not have more sympathy. Maybe you can work a little extra by coming in 15 minutes early and/or staying 15 minutes late if your calls or absences are causing a problem? Then they can not say you did not try to make up for it. I was lucky - my work was very helpful while my husband was in the hospital for 2 1/2 months having inpatient chemo.

As to the waiting for it to come back, I think those of us who have loved ones who beat the cancer, we all do that. Even 4 years cancer free - the dread starts building when testing time draws near.

I have a friend that had the Whipple also - she is doing well now and is still cancer free. Pancreatic cancer can be survived. I would suggest whole foods and no sugar and low carb. Cancer thrives on sugar and carbs.

Most of the members here are quiet until we are needed. Many check in when a new member joins.

~Nancy


"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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SOVTWALKER's Photo SOVTWALKER Posts: 14,845
2/7/16 10:27 A

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Yay for your son! I hope he continues to be healthy for many more years. I just joined this group but it looks like there have not been many recent posts. I figure I will stick around a while and see if it becomes more active, but if not I may leave the group.

A little about me and my husband- I am the caregiver for my husband who was diagnosed on 2/20/2015 with cholangiocarcinoma ( bile duct cancer). As I am sure all of you know it was quite a shock to us. This all started in October of 2014 with a lot of abdominal pain. It was initially thought to be from his gallbladder, which was removed in Dec 2014. Continuing pain led our PCP to run more tests and the suspicion that a gallstone had been trapped in his bile duct. He was scheduled for a procedure to remove it on 2/20/15, but it turned out to be a tumor blocking his bile duct rather than a gallstone. He had the Whipple surgery on 3/19/15 to remove the tumor, along with his bile duct, part of his pancreas, part of his intestines, and a small piece of his stomach. The pathology reports showed clear margins, but the cancer was in 3 out of 11 lymph nodes, putting him at stage 2B and meaning they wanted to do radiation and chemo to help minimize the chance of a recurrence. That further treatment was delayed due to a number of post-op complications, but he started 5 1/2 weeks of radiation at the end of June and then 4 cycles of chemo starting in late September. He was supposed to have one more round of chemo, but he developed an enterocutaneous fistula in mid-December and chemo had to be stopped. He also had a partial intestinal blockage and underwent a bowel resection and fistula repair surgery on 1/12/16. After that surgery he felt the best he has felt in over a year so we are hopeful that it gets better from here. He did have another bump in the road last week when he had to be hospitalized again due to another suspected infection. It turned out to be less serious than at first thought but he had laparoscopic surgery last Tuesday that did find a couple of minor problems that were repaired. Last night one of his doctors called us to say one of the cultures taken last week had grown something so he will be on antibiotics for the next week. Hopefully things will go smooth now for a while. At the moment we are told he has no evidence of cancer but he will be monitored closely for the next few years. From what I understand this cancer has a pretty high recurrence rate, especially if it gets into the lymph nodes. He was luckier than many as it was found before it had spread to other organs. While I am thankful that he was able to have the life-saving surgery and he currently has no visible cancer it is always in the back of my mind that this might only be temporary. I try not to focus on it, but the thought doesn't go away completely. He has retired from his job on disability, but I still have to work another 2 years before I can take early retirement (I will be 60 in a few months). I think my biggest fear is that by the time I can retire he will not be healthy enough for us to do all the things we have been planning to do in retirement. Currently he is very weak after all he has been through in the last year, including losing 70+ pounds (most of which was okay because he was 50 pounds overweight to start), but we hope he might start getting his strength back now that the radiation, chemo, and surgeries are behind him.

It has been a challenge trying to keep up with his health and keep my job too. I did not go to the office at all between 3/19/15 when he had his surgery and mid-May. He was either in the hospital or at home but on a feeding tube, TPN, or IV antibiotics all that time and I was the one taking care of all of that. We did have a visiting nurse coming in twice a week to check on him, draw blood for labs, and change the dressing on his PICC line but on a daily basis I was taking care of him. I was allowed to work some from home so that I was able to keep up with some of my work as well as not use up all of my paid time off so quickly. I went back to work part-time in mid- May and once he was off all IVs in early June I went back full time, but I have taken several days off to go to various appointments with him and I was out for his two recent hospitalizations. In some ways my employer has been understanding and in others they have not. I got a big lecture from my supervisor once about getting or making too many personal phone calls after I had received a call from one of his doctors at work. When I went back to work after his hospitalization last week I got a lecture from her about my attitude and how I supposedly had been rude to co-workers on multiple occasions recently. I don't think I have been rude, but I can't deny that my attitude toward work has changed- mostly after getting lectured about phone calls because I had to talk to one of his doctors. I very often work through breaks or take short lunch breaks so that I can get things done, so it isn't like they are not getting the time out of me that they pay me for. I think my boss is just frustrated that I am out so much and she and the other person in our department have to pick up extra work when I am not there. I can sympathize but it isn't like I have a choice. I think it will be a long two years until retirement! I would look for another job but if I change jobs I won't qualify for FMLA if I have to be out for future appointments.

Sorry this is so long! I hope everyone on the team is doing well (as well as we can under difficult circumstances).

Bev (from Vemont)

Anyone who has ever reached a goal started by taking that first step.


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JIBBIE49's Photo JIBBIE49 Posts: 73,958
1/20/16 8:40 A

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My son, Nathan had Testicular Cancer 7 years ago in January and they did surgery and he had four rounds of Chemotherapy which took about six months time because his white cell count would drop so low. But, he is now 31 and healthy. He works out and keeps himself fit. I knew four young men back in the 70's who died from Testicular Cancer, so this is a victory for medicine today. Bobby died at 27 leaving a wife and small child. I still miss him as he was a really sharp guy. The other three I didn't know personally, but knew a family member.

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UNICORN212's Photo UNICORN212 Posts: 13,257
12/18/15 10:13 P

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It has been very quiet here. I hope that means good things are happening in your lives.

I am happy and grateful to report that my husband is is now 4 years in remission from Burkitt Lymphoma. The experienced changed us both, but we are still here and still together, so that is a good thing.

Thank you for the support when I needed it.

Nancy

~Nancy


"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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