My doctors know nothing

Posted by Turkey, Volunteer Mentor @tomrennie, Jun 13, 2023

There seems to be a general distrust of all doctors. That is sad. No matter how much homework I do, no matter how much I read and study, no matter how many big words I can regurgitate, I am still not a doctor. I can find anything on the Internet to contradict everything my doctors have told me. I choose not to do that. I choose to work with them. We have cancer. Testing for it, treating it, and living with it is going to hurt. There is no avoiding it. But working with and trusting my doctors has significantly reduced my pancreatic NET tumors. My innumerable lesions on my liver have stabilized. 9 months of CAPTEM have made a huge difference. The first few months were hard. The CAPTEM made me so sick. But working with my doctors, we found some support meds that make the treatment tolerable. I am mid cycle, and I am going for a morning walk with my dog. Getting out of bed wasn't possible 9 months ago. I love my doctors.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

If you have any doubts, seek another opinion.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

Haha on the typos. I seem to find most of them after the submitting something. By default, I have become quite friendly with the edit button. I totally understand. And you are welcome.

First off, he is a stud for not taking the nausea meds. I took Odansetron. It did not make me anxious. In fact, it gave me peace of mind. I had been vomiting so long from the cancer symptoms that I was relieved that something was supposed to help. Maybe it was mental. Who knows. I am aware of the potential symptoms, but I have to feel it to make it real for me. Also, don't project what happens to others onto yourself. If others have a harder time with the second cycle, be aware of that. Don't expect it. Everyone reacts differently, Unfortunately, it does take some trial an error to find what works for each patient. I am guilty of the veggie smoothies as well. I hate vegetables. I go the smoothie route myself. In reference to his job being physical, I think that is great. Keep it up. I believe the more active you are, the better it is for your treatment. I now hike a few miles a day most days. I think it helps. Did he not share his diagnosis with coworkers? I completely understand that as I initially did the same thing. After a concerned coworker talked to me, I found most others were very supportive. Like the cancer, each work environment is different. Navigating it as well has its own unique obstacles.

I hope any of this helps. Please share back. The first part is getting going. You have made that first step. Folks here are great at being honest about what worked, and what didn't, on their journey.

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Hello Tommy. How are you today Buddy. Can you tell me what CAPTEM is because I may ask my Doctor about it the next time I see him, Because at the moment my Cancer is still stable in the Liver & Pancreatic so far. But at my age of been 80 yrs old and with hart problems Plus other things that I've got, if it start to get away is it worth fighting on, because I'm I've already had enough already of this been sick and weak all the time. To me this is not a life but a pain in the butt. I was told at the start my Cancer is so rear that they would be luck to find 27 other people in the hole of Australia that has the same as me & even the USA would only have about 59 that has my Cancer & if it get away I've only have about 5 to 6 weeks of life left that how fast it will move. But what is CAPTEM ?????

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Profile picture for razorsharp @razorsharp

Hello Tommy. How are you today Buddy. Can you tell me what CAPTEM is because I may ask my Doctor about it the next time I see him, Because at the moment my Cancer is still stable in the Liver & Pancreatic so far. But at my age of been 80 yrs old and with hart problems Plus other things that I've got, if it start to get away is it worth fighting on, because I'm I've already had enough already of this been sick and weak all the time. To me this is not a life but a pain in the butt. I was told at the start my Cancer is so rear that they would be luck to find 27 other people in the hole of Australia that has the same as me & even the USA would only have about 59 that has my Cancer & if it get away I've only have about 5 to 6 weeks of life left that how fast it will move. But what is CAPTEM ?????

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Hello @razorsharp,

I see that you were inquiring about the CAPTEM. Until, @tomrennie, responds to your post, I wanted to share with you some information about CAPTEM from the National Institute of Health website. Here is the link, https://pmc.ncbi.nlm.nih.gov/articles/PMC9790144/

On Connect, there are many members who have posted about using this chemotherapy treatment. Here is a link to those conversations, https://connect.mayoclinic.org/search/?search=CAPTEM.

In general, how are you feeling, @razorsharp?

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Doctors are only human and do their best. With a less common condition like NET even an experienced oncologist might be uncertain about the best course of treatment.
My condition attracted numerous doctors during my several hospital stays. Often I could hear them discussing treatment outside my room. Some wanted to do chemo, one dissenter said chemo doesn't work for this, just makes you sick. Another doctor wanted targeted radiation (PRRT) while others said I wasn't a good candidate, their hospital didn't have it, and those that did had waiting times etc.. The surgery guys wanted their chance, another doc said what for? you can't take out the whole liver.
Eventually I ended up with all those and more (lanreotide, diazoxide, TAE). As have many patients but the sequence can vary quite a bit.

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Profile picture for razorsharp @razorsharp

Hello Tommy. How are you today Buddy. Can you tell me what CAPTEM is because I may ask my Doctor about it the next time I see him, Because at the moment my Cancer is still stable in the Liver & Pancreatic so far. But at my age of been 80 yrs old and with hart problems Plus other things that I've got, if it start to get away is it worth fighting on, because I'm I've already had enough already of this been sick and weak all the time. To me this is not a life but a pain in the butt. I was told at the start my Cancer is so rear that they would be luck to find 27 other people in the hole of Australia that has the same as me & even the USA would only have about 59 that has my Cancer & if it get away I've only have about 5 to 6 weeks of life left that how fast it will move. But what is CAPTEM ?????

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Hey. Good morning to you. I am doing great. I woke up. How are you today? CAPTEM is a combination of two chemo pills, capecitabine and temozolomide. Typically, you take capecitabine for 14 days. On the last 5 days, you add temozolomide. It is a wee bit stronger. Each 14 days is called a cycle. I was on CAPTEM for 13 cycles. It shrunk my main cancer issues on my pancreas and liver over 50% allowing my body to work again. For the past two years, I have just been on capecitabine and everything has remained stable. It most likely won't last forever, but I am going to ride the capecitabine train as long as I can. I am curious. What day and time is it in your part of the world?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

Hey. Good morning to you. I am doing great. I woke up. How are you today? CAPTEM is a combination of two chemo pills, capecitabine and temozolomide. Typically, you take capecitabine for 14 days. On the last 5 days, you add temozolomide. It is a wee bit stronger. Each 14 days is called a cycle. I was on CAPTEM for 13 cycles. It shrunk my main cancer issues on my pancreas and liver over 50% allowing my body to work again. For the past two years, I have just been on capecitabine and everything has remained stable. It most likely won't last forever, but I am going to ride the capecitabine train as long as I can. I am curious. What day and time is it in your part of the world?

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I am on capecitabine alone. I will ask my doctor about CAPTEM.
Does CAPTEM have more side effects than capecitabine?

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Profile picture for zacharycat @zacharycat

I am on capecitabine alone. I will ask my doctor about CAPTEM.
Does CAPTEM have more side effects than capecitabine?

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Yes. The temozolomide beat me up a little more. It is usually taken with ondansetron (Zofran) to help with nausea and vomiting. Initially, I did have a fair amount of nausea, but it got a lot better over time. How are you handling capecitabine? Any issues?

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Well I feel lightheaded or dizzy fairly often, food tastes different and my blood pressure is higher than it used to be. No nausea or vomiting so far.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @razorsharp,

I see that you were inquiring about the CAPTEM. Until, @tomrennie, responds to your post, I wanted to share with you some information about CAPTEM from the National Institute of Health website. Here is the link, https://pmc.ncbi.nlm.nih.gov/articles/PMC9790144/

On Connect, there are many members who have posted about using this chemotherapy treatment. Here is a link to those conversations, https://connect.mayoclinic.org/search/?search=CAPTEM.

In general, how are you feeling, @razorsharp?

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Thank you for your Info buddy I will look into it

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Profile picture for Turkey, Volunteer Mentor @tomrennie

Hey. Good morning to you. I am doing great. I woke up. How are you today? CAPTEM is a combination of two chemo pills, capecitabine and temozolomide. Typically, you take capecitabine for 14 days. On the last 5 days, you add temozolomide. It is a wee bit stronger. Each 14 days is called a cycle. I was on CAPTEM for 13 cycles. It shrunk my main cancer issues on my pancreas and liver over 50% allowing my body to work again. For the past two years, I have just been on capecitabine and everything has remained stable. It most likely won't last forever, but I am going to ride the capecitabine train as long as I can. I am curious. What day and time is it in your part of the world?

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Hi Tommy. Thank you for replying back to me with all that Info about CAPTEM. Now when I got back to the Hospital and see the Doctor I will ask him about the Pills your taking, because I have not heard of anyone that I know who has Cancer taking pills as a treatment so far, but I will talk to him about it that is for sure. my only concern is my age and all my other problems that I've got. Thing like my old hart that needs a Pacemaker to keep it ticking over. plus other things. The problem we face is they give you 1 thing to fix a problem but that pill then give you other problems. So what can one do is the Big question ????? . The day here right now is Tuesday 19/08/25 and the time is 6.15 Am in the morning . Take Care Tommy

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