Newbie looking for some guidance and support
After a routine check up my father's blood count came back extremely low. They told him to go to the hospital immediately. 4 transfusions later they ran a series of test to find out he has colon cancer. They did emergency surgery and removed 8inches of his colon! all of the cancer and 27 lymph nodes. Out of the 27, 2 came back positive- he is a stage 3. they did a cat scan and it showed no tumors in any organs. After 15 days he is now home, waiting on a pet scan and then he starts chemo on 8.5.
my dad is 66 is has always taken great care of his health. He had a colonoscopoy just two and a half years ago and it was clear- now stage 3 cancer.
damn this disease. I'm so mad and scared and unsure about the future. I have two small children ages 2 and 4 who look at their grandfather like superman. I know life will never be the same, I just hope the new normal isn't that bad. His team of doctors are very optimistic saying chemo is just precautionary because of the lymph node involvement but I am scared of the unkown and what the future holds.
I pray every night for everyone going thur this and for their families next to them.
Has anyone has a similar diagnosis and a good outcome? I know every case is different but I need to start seeing positive and I just can't right now.
Thanks
Comments
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Sorry to hear about your dad
He is very similar to my diagnosis but I had a couple of more lymph nodes. Everyone is different but I am here now 2.5 years post chemo and adjusted to the new normal. Regular bloodwork and scans so far so good. Only side effects are some bowel issues and severe neuropothy from the oxiliplatin. Make sure your dad lets the onc know when it is getting worse so they can reduce the dosage. Mine was stopped at 8 but still got me. I am also here to be with my wife and 2 girls now 14 and 10.
hope dad can have someone with him at each appointment as your head is spinning. Get a binder and write down all od your questions and bring it to each visit. Also, get copies of very test and scan and keep them in there. Chemo is no walk in the park but it is very tolerable with all of the advancements that have come out to deal we the side effects. You will get great advice here and do not be afraid to ask more questions or to rant while going through the process.
Good luck,
Allen
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So sorry.esk2poo said:Sorry to hear about your dad
He is very similar to my diagnosis but I had a couple of more lymph nodes. Everyone is different but I am here now 2.5 years post chemo and adjusted to the new normal. Regular bloodwork and scans so far so good. Only side effects are some bowel issues and severe neuropothy from the oxiliplatin. Make sure your dad lets the onc know when it is getting worse so they can reduce the dosage. Mine was stopped at 8 but still got me. I am also here to be with my wife and 2 girls now 14 and 10.
hope dad can have someone with him at each appointment as your head is spinning. Get a binder and write down all od your questions and bring it to each visit. Also, get copies of very test and scan and keep them in there. Chemo is no walk in the park but it is very tolerable with all of the advancements that have come out to deal we the side effects. You will get great advice here and do not be afraid to ask more questions or to rant while going through the process.
Good luck,
Allen
Stage 4, going on 6 years, don't give up. Decide now to stay strong.
So sorry, you had to come here, but we will journey with your Dad. Ask swat.
What at chemo is your Dad on?
has he had a pet scan yet?
whats hats his CEA blood level? Cancer marker.
Raquel
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Good daughter
What a special daughter you are. I am sure you're father is proud of you.
There are MANY who have stage III who are years out and have had no problems. Most of them don't come to the forum any more, or only on occasion; as you can imagine, they like to move on, or find it hard to watch those of us with issues; but they will pop in now and again, to tell us how they are doing. If you scroll back several pages, you will find them.
I tell you this because I don't want you to get discouraged when most of the people who will reply are those who are Stage IV or still struggling at Stage III.
Try your best to worry about what your dad is facing now, and leave the future to the future. As he prepares for chemo, there are things he can prepare for, depending on which cocktail his Oncologist plans to have him on.
I wish him all the luck in the world. Be sure to come here with any questions, concerns and updates.
Blessings!
SUE/TRU
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Hi and welcome
We hate the circumstances which made you search for a place like this, but very glad you found us. Here we share pretty much everything about treatments and the disease and what it does to not only the patient but also the caregivers and the family. We laugh, cry, shout and have pity parties...we do it all. In other words, always feel free to come and share your feeling and Dad's.
Asking questions and sharing experiences is another thing you will find here. No question is dumb. Always feel free to ask. Someone may have had the same or similar experience.
Can you give us a general location for Dad? We have folks from around the world here, and someone may be able to recommend drs or facilities if you find you/he want other opinions or options.
It is very importan that Dad feel comfortable and confident in his health care team. They should be willing to listen to whatever he has to say and be willing to explain all to him. My sister's onc (she had a different cancer) had a 1 hr "class" for those heading into chemo and/or radiation treatments. It certainly helped to take some of the fear of the unknown out of it.
Make sure that Dad and his primary caregiver get an after hours phone number to contact the onc medical staff. Also make sure he knows to report any out of the norm physical changes during chemo...including fever, nausea, dizziness, etc. There are pre-meds which can be given chemo day, at home meds, or reduced dosages to help him tolerate the treatments easier.
New chemo patients are notrious about not wanting to say anything about these issues because they think they should just deal with it. Not so. It is very important for the onc to know all about how the body is handling the treatments.
A good outcome is always possible for the cancer patient. It does change us though and those who love us. Making the most of every day is the best we can all do. Fear of what may happen comes to all. Do not let that become the dominate emotion. There is always hope to be had until the last breath.
One more important thing to remember, no one doctor knows everything. We must be our own best advocate when it comes to our medical care.
Dad and those that love him are just now dealing with this situation. Please come often and ask all the questions you want, and always feel free to express your feelings. We are here for you.
Marie who loves kitties
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Thank you for your supportLovekitties said:Hi and welcome
We hate the circumstances which made you search for a place like this, but very glad you found us. Here we share pretty much everything about treatments and the disease and what it does to not only the patient but also the caregivers and the family. We laugh, cry, shout and have pity parties...we do it all. In other words, always feel free to come and share your feeling and Dad's.
Asking questions and sharing experiences is another thing you will find here. No question is dumb. Always feel free to ask. Someone may have had the same or similar experience.
Can you give us a general location for Dad? We have folks from around the world here, and someone may be able to recommend drs or facilities if you find you/he want other opinions or options.
It is very importan that Dad feel comfortable and confident in his health care team. They should be willing to listen to whatever he has to say and be willing to explain all to him. My sister's onc (she had a different cancer) had a 1 hr "class" for those heading into chemo and/or radiation treatments. It certainly helped to take some of the fear of the unknown out of it.
Make sure that Dad and his primary caregiver get an after hours phone number to contact the onc medical staff. Also make sure he knows to report any out of the norm physical changes during chemo...including fever, nausea, dizziness, etc. There are pre-meds which can be given chemo day, at home meds, or reduced dosages to help him tolerate the treatments easier.
New chemo patients are notrious about not wanting to say anything about these issues because they think they should just deal with it. Not so. It is very important for the onc to know all about how the body is handling the treatments.
A good outcome is always possible for the cancer patient. It does change us though and those who love us. Making the most of every day is the best we can all do. Fear of what may happen comes to all. Do not let that become the dominate emotion. There is always hope to be had until the last breath.
One more important thing to remember, no one doctor knows everything. We must be our own best advocate when it comes to our medical care.
Dad and those that love him are just now dealing with this situation. Please come often and ask all the questions you want, and always feel free to express your feelings. We are here for you.
Marie who loves kitties
Thank you for your support and kind words.
We reside in Henderson, NV and he will be seeing the cancer and blood specialist of Nv. I wanted him to get treatment T the mayo in AZ, as the Las Vegas area isn't known for the be st healthcare and school system but the doctos assured us that treatment for his condition is stanard procedure and unless he was severely advanced or had a rare cancer it didn't matter where he went. Him and my mother are comfortable with their team of doctors And they are walking distance from our house which is always nice (not like anyone is walking in this summer heat!!)
I believe he will be starting a regime if 5FU + Leucovorin combined with a third that starts with a O?? He will do 12 cycles, one every other week and wear a pump for 2 days following a cycle. Is this routine? We are all scared of the side effects as ive heard rumors and 5Fu is nicknamed five feet under.
He will have a PET either next week or the week after, as soon as he gets the clear from the surgeron. I'm not sure what u mean by cancer marker? Is this something I should ask hiM or read the pathology about?
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CEA - cancer markerDaddy's girl said:Thank you for your support
Thank you for your support and kind words.
We reside in Henderson, NV and he will be seeing the cancer and blood specialist of Nv. I wanted him to get treatment T the mayo in AZ, as the Las Vegas area isn't known for the be st healthcare and school system but the doctos assured us that treatment for his condition is stanard procedure and unless he was severely advanced or had a rare cancer it didn't matter where he went. Him and my mother are comfortable with their team of doctors And they are walking distance from our house which is always nice (not like anyone is walking in this summer heat!!)
I believe he will be starting a regime if 5FU + Leucovorin combined with a third that starts with a O?? He will do 12 cycles, one every other week and wear a pump for 2 days following a cycle. Is this routine? We are all scared of the side effects as ive heard rumors and 5Fu is nicknamed five feet under.
He will have a PET either next week or the week after, as soon as he gets the clear from the surgeron. I'm not sure what u mean by cancer marker? Is this something I should ask hiM or read the pathology about?
The CEA cancer marker is one of the blood work tests that is done. It may or may not be an accurate indication of cancer activity. For some it can never rise above "normal" range and they still have active cancer. For some it can be high and be caused by another medical condition such as infection.
Some doctors put no emphasis on it, some do it routinely and watch for trending up or down. It wouldn't hurt to know how his doctor feels abou this test.
The treatment you describe does sound fairly standard for first line treatment. I suspect that the "O" component is Oxi, which is the contributor of neuropathy in hand and feet. For some it is a temporary side effect, for others it fades over time after treatment, for others it remains a life long issue. If he does have this complaint it is important to let the onc know right away so they can consider reducing it or removing Oxi from the mix.
Wishing your dad best possible outcome.
Marie who loves kitties
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Stage 3 is definitely curable,
so you can have a lot of hope that your dad will get through this and come out the other side, once again in good health.
Keep us posted on how he's doing...we're happy to give whatever help and support you all need.
Big hugs~AA
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Stage III
I'm not as active as I could be -- I just swing in a couple of times a week.
Our situations are a bit different, but I know what those first few weeks are like. My husband has had 6 weeks of chemo/radiation. Now, it's the waiting period to find out if the surgeon wants more chemo before he removes the tumor and surrounding lymph nodes.
Waiting is the worst part. I like to be doing something (or holding his hand while he's doing something).
We're getting used to having our "normal" change frequently. We try to do our normal things and schedule treatments and appointments when they interfere the least.
Hugs to you and your family.
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OxaliplatinDaddy's girl said:Thank you for your support
Thank you for your support and kind words.
We reside in Henderson, NV and he will be seeing the cancer and blood specialist of Nv. I wanted him to get treatment T the mayo in AZ, as the Las Vegas area isn't known for the be st healthcare and school system but the doctos assured us that treatment for his condition is stanard procedure and unless he was severely advanced or had a rare cancer it didn't matter where he went. Him and my mother are comfortable with their team of doctors And they are walking distance from our house which is always nice (not like anyone is walking in this summer heat!!)
I believe he will be starting a regime if 5FU + Leucovorin combined with a third that starts with a O?? He will do 12 cycles, one every other week and wear a pump for 2 days following a cycle. Is this routine? We are all scared of the side effects as ive heard rumors and 5Fu is nicknamed five feet under.
He will have a PET either next week or the week after, as soon as he gets the clear from the surgeron. I'm not sure what u mean by cancer marker? Is this something I should ask hiM or read the pathology about?
I would guess on that being the O. It is the regime that I went through. Does FOFOX sound familiar?
I had the Oxaliplatin (platnum based chemo), Leucovorin, and went home with the 5FU via pump for 46 hours too. Then when my nine weeks of that were done, I had six weeks of Radiation and six weeks continuous hook-up to the 5FU.
The Port which he will have placed in his chest is WONDERFUL. Port is so much easier than finding a vein each treatment.
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Similar situation
I am a stage 3. I had cancer in two sites spotted in a colonoscopy. They removed 4 feet of my colon. Afterwards, I started the Folfox regime. I'm supposed to do 12 cycles. I've done 4 so far. Every round has been a different side effect. Right now it's shingles! I dont think I ever heard death sentence. I heard a battle ahead but you can kick cancers behind. This board has been a lifesaver! All questions are relevant. Love and support is rampant. I keep a journal of the days experiences and questions for my doctor. Ask ask ask. Don't be afraid to ask anything! My children hit panic to begin with and then put their war paint on. It's all about feeling good about the choices you and your family make. Prayers for you and your family.
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Best anti nausea drug
I was stage 3 and did folfox 6. Emend is an anti nausea drug that's a lifesaver. It's expensive but my onc got it covered for me. Get a port and ask for lidocaine cream to numb it before they poke it. I could taste the chemo! I sucked on hard candy when they were infusing me, oh yes infusion is quite boring. Bring things to do during the hours you're sitting there. Lotion for dry skin and gloves because everything feels oddly cold. Forgive him for 'chemo brain,' his thinking may be fuzzy. I'll post more if I can remember, Good luck to you and your dad, best wishes0 -
My Advice...
First, I'm sorry to hear about your Dad. Like Ron, I've been at this a long time, DX (diagnosed) stage IV colon cancer in Feb 2004. The best thing your Dad can do (IMO) is to make sure he's with the best doctors possible (meaning a cancer center). From what you've told us it sounds to me like your Dad stands a very good chance of getting through this. While they didn't catch it at stage I, they didn't catch it at stage IV either. The fact that the CT showed no other organs involved is a big plus too.
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Feeling your pain
Hi, my mum is currently delaing with stage 4 colon cancer that has spread to her liver, so I know what you are going through, and I dont know how I am trying to hold on. Its like Im living in a dream, that I cant wake up from. Everyone around me is saying prepare your self for the worst, you know theres no cure, you know that it is not a good outcome, she might not have much time left. Well Im trying to stay positive and I know that the end will be when she decides to give up.
She was diagnosed in April 2014, but had been suffering with pain for over a year. She went to hospital in 2013 and they could not identify what was wrong with her, they sent her home with some pain meds. Finally she went back to hospital in February '14 with the same pain and then they did some tests, couldnt find anything. So we went to see her general physician and she took up the investigation as to what was causing her so much pain. Sent her to a gastro doc, he asked for a CT, then it was that radiologist that suggested colon cancer. We never even had thought of the C word at the time. After a colonoscopy, they couldnt 100% positively identify whether is was cancer, so they did an ultrasound and saw the liver had a lot of growths. So then she had a liver biopsy, which confirmed it was colon cancer. They have said that she might have 5-10 years depending on how well her treatment goes.
She underwent first chemo in May, I think she tried xeloda and it made her really sick. The second one they gave her was irinotecan which wasnt as hard on her but then she got to a point where she ended up with colitis and suffering from bacterial infection and diahhrea, So now we are trying to get a second opinion and the insurance was holding it all up, but hopefully now she can go once she gets out of hospital.
Try to stay hopeful. It is hard - but if your dad wants to fight then he has a chance same as anyone.
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I was diagnosed(2012) Stage
I was diagnosed(2012) Stage IV with mets/to the liver.I am 61 years old. I had colon and liver surgery immediately and followed up with 6 months of chemo. I am now in "complete remission" and feel wonderful! I sailed through the chemo BUT watch out for the side effects as I have permanent neuropathy in my feet and hands from too much Oxyplatin. They watch for it but if your Dad's hands start to peel-discuss with the MD the option of reducing or stopping the Oxy. My hair thinned out a bit but I didn't lose it all. Other than that I feel great, no other side effects and have a great long-term prognosis. Good luck to you and your Dad!
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Hello MaggieBrunomaggieBruno said:I was diagnosed(2012) Stage
I was diagnosed(2012) Stage IV with mets/to the liver.I am 61 years old. I had colon and liver surgery immediately and followed up with 6 months of chemo. I am now in "complete remission" and feel wonderful! I sailed through the chemo BUT watch out for the side effects as I have permanent neuropathy in my feet and hands from too much Oxyplatin. They watch for it but if your Dad's hands start to peel-discuss with the MD the option of reducing or stopping the Oxy. My hair thinned out a bit but I didn't lose it all. Other than that I feel great, no other side effects and have a great long-term prognosis. Good luck to you and your Dad!
Welcmoe to the forum.
Your survival story is wonderful, a lift to all who are fighting the fight.
It would be great if you could open up your own thread, so that we can all welcome you there.
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Welcome to the forum Holdtohopeholdtohope said:Feeling your pain
Hi, my mum is currently delaing with stage 4 colon cancer that has spread to her liver, so I know what you are going through, and I dont know how I am trying to hold on. Its like Im living in a dream, that I cant wake up from. Everyone around me is saying prepare your self for the worst, you know theres no cure, you know that it is not a good outcome, she might not have much time left. Well Im trying to stay positive and I know that the end will be when she decides to give up.
She was diagnosed in April 2014, but had been suffering with pain for over a year. She went to hospital in 2013 and they could not identify what was wrong with her, they sent her home with some pain meds. Finally she went back to hospital in February '14 with the same pain and then they did some tests, couldnt find anything. So we went to see her general physician and she took up the investigation as to what was causing her so much pain. Sent her to a gastro doc, he asked for a CT, then it was that radiologist that suggested colon cancer. We never even had thought of the C word at the time. After a colonoscopy, they couldnt 100% positively identify whether is was cancer, so they did an ultrasound and saw the liver had a lot of growths. So then she had a liver biopsy, which confirmed it was colon cancer. They have said that she might have 5-10 years depending on how well her treatment goes.
She underwent first chemo in May, I think she tried xeloda and it made her really sick. The second one they gave her was irinotecan which wasnt as hard on her but then she got to a point where she ended up with colitis and suffering from bacterial infection and diahhrea, So now we are trying to get a second opinion and the insurance was holding it all up, but hopefully now she can go once she gets out of hospital.
Try to stay hopeful. It is hard - but if your dad wants to fight then he has a chance same as anyone.
I am sorry you have to be here, but its a good place to find information, help, support and a whole bunch of other things.
Why don't you open your own thread and introduce yourself, telling us about your mum. Then we can all welcome you without hijacking this thread.
SUE/TRU
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TO "NEWBIE LOOKING FOR SOME GUIDANCE AND SUPPORT:
Hi. My name is Val, and my best friend, Cathy, sounds like she has EXACTLY the same situation as your dad:
Cathy (65) went to the e.r., thinking she was having heart issues -- shortness of breath, etc. Turns out she had lost 50% of her blood. 6 transfusions later they ran a series of test to find out she has colon cancer. They did emergency surgery and removed 12 inches of her colon, all of the cancer and 13 lymph nodes. Out of the 13, 2 came back positive - she is stage 3. They did ct scans on her liver and lungs and it showed no tumors in either. However, there were two "tumor deposits". She is now home, waiting on her first appointment with M.D. Anderson on the 25th as well as chemo every two weeks for six months. This was a TOTAL shock to EVERYONE. She had just had a heart attack and received two stints a year or so ago. However, she is 65 and has NEVER had a colonscopy due to no insurance and lack of funds. How is your dad doing?
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