Newbie- Husband Stage 4 at age 35
Hey Everyone!
I just wanted to introduce myself and hopefully get some support here. We got back from the hospital on Tuesday, Nov. 29th. Its almost been three weeks since we found out about the cancer. My husband is a 35 year old professional musician who is one of those "never been sick a day in his life" kinda guys. He is a vegetarian and runs 5 miles about 4-5 times a week. He always went to the "natural" doctor and was seemingly fine. On Nov. 22 we went to the doctor and after a CT scan we were told to go to the ER, where after a few days of waiting and scary words, we were told he had stage 4 colon cancer that had moved to the liver, with up to 6 lesions on his liver. They removed 2/3's of his colon and got the main tumor. We are now waiting to start chemo.
We were already trying to start a family and now we have one month to keep trying and get his sperm frozen. We want to TRY and keep living the life we wanted in the first place.
We have great hope and HE has the best attitude EVER. He is 100 percent sure he will beat this and is so positive. I on the other hand am not as positive as him and am worried sick. I am so scared and I think it is hard for him to understand. He thinks doing research and looking things up on the internet aren't healthy but I want to be informed. And the statistics are REALLY scaring me. Now I am wondering if living our life like we had planned is selfish.
I am trying to be strong and have a great positive attitude but inside I am dying. It is so good to know there are stage 4 colon cancer surviviors out there and I would love any support ot information you have.
Peace.
Laura Byrd (Facebook:Laura Watson Byrd and JR Byrd)
Comments
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Welcome, Laura
It is completely normal to be fearful of the future, especially as you are so 'new to the game'. Believe me, as things progress and your husband starts chemo, your fear, which will always be there, will settle down and you will find the positive and be able to move forward with him.
Stats are just that, stats. Most of those you see online are old and out of date. There have been great strides just in the last few years that can make that Stage IV more a chronic disease than a death sentence.
Your husbands positive attitude will take him a long way. The body LOVES positive. It feeds on positive. It also feeds on negative, in a bad way, so being positive is a must.
You will love our forum. Its slow at the moment, but folks here will rally around you and help you as you walk this walk with your husband. Don't be shy. Post often with any questions, concerns, heartaches, fears, well, just about anything that you are expreincing. We are here for you.
Oh, and let us know what treatment he will be having. We can help you prepare for those dreaded side effects.
TRU
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There are many long term survivors
Laura,
I was really happy to find this forum and read the stories of those who have survived Stage 4 cancer! I also have stage 4, I made it through 8 rounds of chemo without getting very sick from it, I suffered some loss. Now I'm on a maintainence regime of Xeloda and Avastin, and am very happy that my hair is growing back!
It is very frightening to hear the diagnosis, but as Trubit said the statistics are old. The medical field is steadily advancing. There is hope for your husband to be cured.
Don't give up your dreams. Live your life for as long as you are alive!
Children are a blessing, go through with freezing the sperm. I hope you have your family and many years to enjoy them!
May God Bless you and your husband.
Joan
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Hi Laura,
Hi Laura,
i am sad to read about your husband and what you are beginning to go through together. It is a hard, hard road for both of you. I am 36, was otherwise healthy and like your husband was diagnosed out of the blue with stage IV colon cancer. The story is on my profile page.
Your husband's age and that he's otherwise healthy and fit are important factors in his favor. He will probably be put on an aggressive chemo treatment which is, honestly, very hard on the body. Everyone tolerates chemo differently, though. The first two treatments were hell on me. Looking back, I was like a zombie. Barely alive. But after those two, my body tolerated the rest better as far as fatigue, diarrhea, nausea, etc.
This diagnosis is almost completely overwhelming at first. It's been 10 months for me since diagnosis and it feels like a LIFETIME. The good thing is, you wont be overwhelmed all of the time. There are ups and downs. Your husband's positive attitude will help both of you through a lot, and the great thing about being a couple is that when he's down you can lift him up and vice versa.
I've gone through a lot of stages in 10 months- from ignorance and utter confusion to disbelief, to being unrealistic, to being despondent and wanting to give up, to fighting, to acceptance, to (currently) holding my own definition of hope in the face of a terminal illness. You and your husband will go through your own stages at your own times. Everyone's cancer is highly individual, as are their choices about treatment. So, I won't presume to tell you what to think about the expectancy of survival, or say "stay positive". Sometimes thats just not possible.
I do strongly recommend that your husband asks his oncologist to tell him what side effects to expect from the treatment, both short and long term. That's one thing that I would do over again if I could: make sure that I was well informed about all of my choices rather than going ahead with everything that my Onc said. When it's presented as life or death emergency, you tend to just go along with what the experts say. But your husband should take as much time as it takes to research his options.
There are people with stage IV colon cancer who live for a lot longer than the projected time. For those with liver mets, if liver resection is possible, then remission is possible. If resection isn't possible, it's largely a question of how well a person can take the chemo and for how long.
I hope that we can be a help to you and your husband on this forum.
Best wishes,
Amy
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Also, I should have said: if
Also, I should have said: if the lesions on your husband's liver are very small, it is possible that chemo alone could knock those out. Some of my tumors shrunk a lot after treatment, and some of the smallest lesions disappeared entirely.
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Hits the LIKE buttonnateswife said:Hi Laura,
Hi Laura,
i am sad to read about your husband and what you are beginning to go through together. It is a hard, hard road for both of you. I am 36, was otherwise healthy and like your husband was diagnosed out of the blue with stage IV colon cancer. The story is on my profile page.
Your husband's age and that he's otherwise healthy and fit are important factors in his favor. He will probably be put on an aggressive chemo treatment which is, honestly, very hard on the body. Everyone tolerates chemo differently, though. The first two treatments were hell on me. Looking back, I was like a zombie. Barely alive. But after those two, my body tolerated the rest better as far as fatigue, diarrhea, nausea, etc.
This diagnosis is almost completely overwhelming at first. It's been 10 months for me since diagnosis and it feels like a LIFETIME. The good thing is, you wont be overwhelmed all of the time. There are ups and downs. Your husband's positive attitude will help both of you through a lot, and the great thing about being a couple is that when he's down you can lift him up and vice versa.
I've gone through a lot of stages in 10 months- from ignorance and utter confusion to disbelief, to being unrealistic, to being despondent and wanting to give up, to fighting, to acceptance, to (currently) holding my own definition of hope in the face of a terminal illness. You and your husband will go through your own stages at your own times. Everyone's cancer is highly individual, as are their choices about treatment. So, I won't presume to tell you what to think about the expectancy of survival, or say "stay positive". Sometimes thats just not possible.
I do strongly recommend that your husband asks his oncologist to tell him what side effects to expect from the treatment, both short and long term. That's one thing that I would do over again if I could: make sure that I was well informed about all of my choices rather than going ahead with everything that my Onc said. When it's presented as life or death emergency, you tend to just go along with what the experts say. But your husband should take as much time as it takes to research his options.
There are people with stage IV colon cancer who live for a lot longer than the projected time. For those with liver mets, if liver resection is possible, then remission is possible. If resection isn't possible, it's largely a question of how well a person can take the chemo and for how long.
I hope that we can be a help to you and your husband on this forum.
Best wishes,
Amy
Excellent post, nateswife.
TRU
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Laura, while it is definitely
Laura, while it is definitely a new normal you will be living, you should pursue the life you both want. It sounds like you're the worrier of the two, and that's useful if he doesn't want to think on it more than he has to. That makes you the investigator and the details person, so find out all you can about treatments and doctors and whose best in your area. Don't hang up on statistics and don't focus on things way down the road, sometimes it's enough just to be in the moment, and let tomorrow work itself out. Take care of yourself while your taking care of him, don't let the fear and anxiety gnaw at you. Some manage it with meditation and long walks, I used Xanax and work. Whatever works, you're starting a marathon, and you'll adapt to it. Good luck to you and your man.....................................Dave
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Beating Stage IV
So sorry to hear your husband has joined our club. The good news is that Stage IV crc is beatable with some luck, in conjunction with taking initiative and educating oneself. Since no one else appears to have mentioned it yet on this thread, I would HIGHLY recommend you look into HAI (hepatic arterial infusion) pump. For those with metastases mostly limited to the liver, it can have unbelievable results. I firmly believe it saved my life, as I presented with innumerable liver tumors 7 years ago, and am now technically NED (knock on wood). If interested, please don't hesitate to look into this, e.g. by searching HAI threads on this board. It's often more effective if done as first line chemo - i.e. before starting chemo anywhere else...but in my case I found out about HAI late, and did it after 12 rounds of FOLFOX. Memorial Sloan Kettering in NYC are the pioneers of this treatment, and are WELL worth the travel IMHO. I won't inundate you with details on the treatment, but I'd be happy to provide additional info if you are interested; please feel free to PM me. Best wishes to you and your husband.
-Chip
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On the road
Hi Laura,
It is definitely a road to travel, but it is doable. Whatever decisions are made, make them with full knowledge. Educate yourselves, be your own best advocates. This board is invaluable, and I encourage your husband to join so he can express himself. Sometimes we find ourselves unable to be fully honest and open with those we love the best, because we end up minimizing our fears and hurts to avoid making them feel bad. You should also express yourself privately, because caregivers often find themselves feeling alone and out of their depth. Just know that we are here for both of you.
Hugs
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HAI pumpgfpiv said:Beating Stage IV
So sorry to hear your husband has joined our club. The good news is that Stage IV crc is beatable with some luck, in conjunction with taking initiative and educating oneself. Since no one else appears to have mentioned it yet on this thread, I would HIGHLY recommend you look into HAI (hepatic arterial infusion) pump. For those with metastases mostly limited to the liver, it can have unbelievable results. I firmly believe it saved my life, as I presented with innumerable liver tumors 7 years ago, and am now technically NED (knock on wood). If interested, please don't hesitate to look into this, e.g. by searching HAI threads on this board. It's often more effective if done as first line chemo - i.e. before starting chemo anywhere else...but in my case I found out about HAI late, and did it after 12 rounds of FOLFOX. Memorial Sloan Kettering in NYC are the pioneers of this treatment, and are WELL worth the travel IMHO. I won't inundate you with details on the treatment, but I'd be happy to provide additional info if you are interested; please feel free to PM me. Best wishes to you and your husband.
-Chip
Hi, I just found this site and just joined. Recently diagnosed Stage IV through a routine colonoscopy. There is a spot on my liver that makes it the Stage IV. Had surgery to remove the tumor and have started chemo. Everything seems to have moved so fast. I am just finding out about sites like this. I would definitely like to learn about the HAI pump. The most recent talk was possible surgery in February to remove the spot on the liver. Should I consider the HAI pump first?
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Diet and Nutrition
Having been newly diagnosed I am trying to find out what is best in terms of diet and nutrition. I keep hearing different things and I am not sure what to do. I know the sugar feeds cancer thing but does that mean even no fruit? Some people have said no sugar at all, even fruit. Others say sugar in fruit is fine and that the fruit provides needed nutrition, especially berries. Some people say that juicing is important but others have said not to juice. I know that ultimately I have to make the decision how I am going to eat, but I am definitely open to any feedback regarding a kick cancer's butt diet. Thanks everyone!
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There are a lot of positive
There are a lot of positive stories and people on this site that will truly listen and understand...wishing you and your husband the best!!!
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Stage IV
Hi Gratefully, just wanted to add my two cents to your comments. If you only have one liver met, and surgeon believes they can get good margins, you may be best off to do that asap. HAI is generally used to bring non-resectable people to resectability, under best case. I suppose you could consider doing HAI install at the time of liver surgery to increase your odds it may not come back...though that may be overkill since HAI can be somewhat intensive on the liver. I'd definitely suggest getting a second opinion either way. I'm inferring that you may be on chemo already? If you've already started, they generally prefer to wait until your first-line chemo tx (12 txs?) is done before taking stock and considering second line HAI. If you haven't started chemo yet, then yes you could well go for an HAI consult first, perhaps the goal would be to shrink the liver met even some more first. Lots of things to consider, but at least it sounds like you have a path to resectability, which is the gold standard for stage IV. In my case, I had so many tumors that I would never have been resectable, but 1st and 2nd lines (FOLFOX+Avastin; HAI FUDR + systemic FOLFIRI) had miraculous results and killed or calcified almost everything (although we had to radiate one stubborn liver bugger a couple years later).
As for other/integrative treatment thinking, I'd highly recommend getting as much exercise as possible (for reducing chemo side effects, possible improvement in tx results, and controlling blood sugar, not to mention empowerment). Also, I was recommended by MSKCC Integrative doctor to consider Vit D, and coriolus versicolor (turkeytail) mushroom PSK supplements. And studies have shown that doing cimetidine before and after resection may reduce likelihood of recurrence. Here's a fantastic evidence-based link from MSK for other potentially useful (or potentially snake oil) herbs and supplements:
https://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbs
Lastly, since "sugar and cancer" was mentioned, I'll just share that IMHO the most credible theory behind that is to reduce blood sugar spikes - which cause the body to release IGF-1 (insulin-like growth factor), which some studies say may be a tumor growth factor as well. Adding fiber, fats or proteins to high-sugar or high-carb meals/snacks can cause the body to digest them slower, which in theory may level out the peaks and valleys in blood sugar (and IGF-1). Of course it's your call how much if any credence you want to give to this, but I'd suggest, like others here, not worrying yourself about every single gram of sugar you put in your mouth. Folks dealing with cancer already have plenty of other things to stress out about (lol?). But it probably wouldn't hurt any of us (cancer or not) to decrease our added sugar intake a bit, and favor less-processed foods.
As always, feel free to PM me with specific q's. Best wishes.
-Chip
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Sugar - EDITGratefully said:Diet and Nutrition
Having been newly diagnosed I am trying to find out what is best in terms of diet and nutrition. I keep hearing different things and I am not sure what to do. I know the sugar feeds cancer thing but does that mean even no fruit? Some people have said no sugar at all, even fruit. Others say sugar in fruit is fine and that the fruit provides needed nutrition, especially berries. Some people say that juicing is important but others have said not to juice. I know that ultimately I have to make the decision how I am going to eat, but I am definitely open to any feedback regarding a kick cancer's butt diet. Thanks everyone!
The body NEEDS sugar and if we don't get it through diet, then it will find it somewhere else in our bodies which will be to the detriment of whatever it takes it from .
Like most things in life, we need to be wise in our eating habits. Definitely fruit, and other natural foods (which is most foods) that contain sugar, as the benifits from the nutrition from those foods are important to our bodies INCLUDING the sugar.
Three candy bars, a dozen donuts, Cherry Cheesecake everyday, then I would say no. One donut a week, a few pieces of chocolate, yeah, they aren't going to kill.
We have to make our own decisoins and one of mine was that I was not going to die after months or years of denying myself some of the pleasures in life, and for me, chocolate, ice cream, donuts and desserts are on that list.
I will stress that a good healthy diet is important, but balance that out with some fun.
Good luck!
TRU - EDIT - Gratefully, can I suggest you post your concerns to the forum open page, in your own thread; that way, we are not hijacking Byrdstrong's thread.
The link is http://csn.cancer.org/forum/128
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Stage IV
Laura,
First, and I don't want this to sound like a downer, but my wife was diagnosed in 1994 and passed away in 1999. The reason it wasn't a downer was because she was stubborn and refused to stop doing what she wanted to do.
Now, if she'd been diagnosed sometime in the last 5 years she'd probably be considered a survivor because in the 1990's there was really one main drug of choice for treatment (5FU) as well as surgery.
That's good news for your husband because the treatment options and ongoing research into new treatments are increasing. Something my oncologist mentioned was that colon cancer is somewhat unique in regards to treatment regimens. For other cancers if the treatment doesn't work then they move to a different treatment and keep going until they've exhausted what's avaialable. With colon cancer there are many drugs and if a particular cocktail doesn't work they just mix the cocktail a little differently.
There are other options beside surgery that have moved into the mainstream. Radio Frequency Ablation is one that involves sticking a probe into the tumors in the liver and cooking the cancer cells. (I only mention it because I'm probably going to through this in February or March). That's just one of several options and each come with certain criteria that the patient has to meet. In the case of ablation the tumors have to be below a certain size, accessible, etc. (See https://www.cancer.gov/about-cancer/treatment/types for a decent tutorial on treatment types as well as other resource material.)
It can be a long road but your husbands attitude, healthy lifestyle, and you will help him considerably. I've been in treatment for 2 years and while I'm looking forward to surviving I'm not going to let cancer treatment rule my life (at least not totally).
For your husband's benefit and your own wellbeing, as a caregiver and partner, you have to take care of yourself both mentally, emotionally, and physically. No one can be Mary Poppins everday (am I dating myself there?) but fear and worry over something that hasn't happened won't help.
Learning about cancer, treatments, side effects, etc. is good information to have. It can keep you from being led astray by a well-meaning but wrong healthcare professional. At one time I worked in healthcare so I have a slightly better chance at weeding through the jargon but it can become overwhelming. So, while I don't think it's unhealthy to do the homework I do think it's good to avoid all of the websites that claim cures by eating broccoli soup or a habanero pepper and garlic clove in a bread and butter sandwich.
I don't think doctors know everything. They can't. I also know that some haven't kept up with current treatments. So, it's always good to question them if you're not sure why they make a particular recommendation for treatment or you can always ask them about the benefits of one treatment over another. The only way you can do that is if you are at least partially aware of available treatements. Don't depend on a doctor to give you the laundry list. Many times they are following a particular protocol set out by the hospital or insurance.
Most statistics you'll see that are quoted by doctors today are based on studies from a decade or more in the past. In order to accumulate stats they have to pick a period of time (5 years seems like a popular period) and then track patients and how long they live. Now, little know factoid, if I'm diagnosed with cancer and then 2 weeks later I have a heart attack I am still included as part of that statisical group that shows that colon cancer patients have a survival rate of x% in the 12 month or less category. That's even though my death was not directly attributable to colon cancer. Stats have not caught up with current treatement regimens but it's all they have at the moment so they are still quoting them like they mean something.
Plus, as I've quoted elsewhere, in the immortal words of Hans Solo, "Never tell me the odds!".
I wish both of you the best of luck.
Bill
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almost 10 years
Stage 4 dx at age 46. Lots of surgeries, chemo and times when I had NED. I went to Stanford and was very happy with the aggressive care I was able to get. There is hope. You are young and as strong as you will be. I encourage you to eliminate as much negative stuff around you as possible, accept help and realize that as a caregiver you have a very thankless job. Take time to keep yourself up as you become the energy for your partner. So sorry but you can read more about my story and please ask questions.
Chip
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WOW
New Friends,
Thank you so much for all your replies, encouragement, information, and hopefulness! I forgot I had posted on here and finally had time today to look at the thread and couldn't believe how many great stories and people had posted.
We had to go to the emergency room right before our second week follow up visit to the surgical oncologist (had partial colectomy 11/25) and THANKFULLY it was not sepsis. They think there is a spot on his spleen that isn't getting enough blood and causing the fever. We have been keeping it down with Tylenol/Ibeprofin but it worries me alot. Just now I went in and it was 101.4!
They said sometimes just having tumors on the liver can cause a fever. Has anyone had this experience?I think it is finally sinking in. We were supposed to go to a Christmas party last night and he seemed excited about it but then when it was time to go he said he didn't feel like it (which I completely understood) He said he just didn't want to talk about cancer the whole time. (most of these people haven't seen him since his diagnosis) He keeps joking about being "the cancer guy" I think it is really messing with his identity.
I will mention this site but he doesn't seem to want help or want to talk about it. He is very sure we will beat it and it will be no big deal. I think he may not fully understand what we are up against but I want him to have a positive attitude so I hate to try to "bring him to reality..." because truthfully we don't have enough information to know that right now.
We have a Petscan in a week and meet with the Oncologist to discuss the treatment options on the 22nd, by then they should have all the genetic testing back.
We have decided to continue trying to get pregnant this month and freeze some sperm. He just said the other day how excited he was to have a baby with me so....WE ARE GONNA LIVE LIFE TO THE FULLEST as LONG as we can!!
With Peace and Great Hope,
Laura
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Feverbyrdstrong said:WOW
New Friends,
Thank you so much for all your replies, encouragement, information, and hopefulness! I forgot I had posted on here and finally had time today to look at the thread and couldn't believe how many great stories and people had posted.
We had to go to the emergency room right before our second week follow up visit to the surgical oncologist (had partial colectomy 11/25) and THANKFULLY it was not sepsis. They think there is a spot on his spleen that isn't getting enough blood and causing the fever. We have been keeping it down with Tylenol/Ibeprofin but it worries me alot. Just now I went in and it was 101.4!
They said sometimes just having tumors on the liver can cause a fever. Has anyone had this experience?I think it is finally sinking in. We were supposed to go to a Christmas party last night and he seemed excited about it but then when it was time to go he said he didn't feel like it (which I completely understood) He said he just didn't want to talk about cancer the whole time. (most of these people haven't seen him since his diagnosis) He keeps joking about being "the cancer guy" I think it is really messing with his identity.
I will mention this site but he doesn't seem to want help or want to talk about it. He is very sure we will beat it and it will be no big deal. I think he may not fully understand what we are up against but I want him to have a positive attitude so I hate to try to "bring him to reality..." because truthfully we don't have enough information to know that right now.
We have a Petscan in a week and meet with the Oncologist to discuss the treatment options on the 22nd, by then they should have all the genetic testing back.
We have decided to continue trying to get pregnant this month and freeze some sperm. He just said the other day how excited he was to have a baby with me so....WE ARE GONNA LIVE LIFE TO THE FULLEST as LONG as we can!!
With Peace and Great Hope,
Laura
I have read other talk about fever, so hopefully they will pop on the forum soon to share. I did not ever have a fever.
Thats the wild think about Cancer, even when we share the same kind of Cancer; we all respond differently to the disease and the treatment. That is why this forum is so good, as you can get responses across the board.
Everybody also responds differently emotinally to their disease. I understand from reading, that many folks just don't want to know everything. I have had freinds in my own life, not just here on the forum, who just don't want to know. They will do the treatments, but they don't want to know the stats, or the side effects and will treat it like the common cold, and just get over it. We are all allowerd to repsond in whatever way helps us make it through.
It seems like if there is a significant other, that regardless wether they are the patient or caregiver, one of them usually wants the info. With me, I want to know it all. My husband and children on the other hand, don't want to hear it. I can tell that they just think I'm OK, and that I will make it through, no problem. Its their way of coping, and I had to come to personally come to grips with that attitude.
I'm glad you remembered to pop back and read your thread. I hope it helps and I hope we can continue to help. These first few months are busy. Things will settle down and it will become part of life.
I wish you both well.
TRU
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