End Stage? or Normal Symptoms? Someone shed some light

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End Stage? or Normal Symptoms? Someone shed some light

by sarah06779 on Fri Jan 11, 2013 07:00 AM

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My 49 year old husband was diagnose with stage 4 colon cancer in April of 2011. Mets to liver and 2 lymph nodes.

No action was taking against the tiny spots (at that time) on his liver. His doctor strongly feels that surgery on a patient with stage 4 cancer is not a good idea. Fear that the cancer may spread further. Also, he told us that cancer always comes back on the liver.

It's been 20 months now. My husband followed all the directions given and took all prescribed meds, however; despite suffering through 3 different types of chemo, he eventually gave up on them. After one stopped working, they'd infuse him with the next strongest chemo and different varieties of chemo drugs.

Around 3 weeks ago, the doctor informed us that there was a new drug available for colon cancer patients. This is a pill taken 1x a day for 3 weeks and then 1 week off. I am praying that this drug will work, but deep down, I have a strong feeling that it just won't happen, given how advanced his cancer has become.

The "tiny" spots on his liver have become large tumors. The cancer never returned to his colon.

Lately, he spends nearly 18 hours a day sleeping. We made an emergency visit to the ER last week since he was experiencing sharp pain in his bowels. He had been badly constipated for nearly a week prior to going to the ER. Earlier tonight, he threw up. He vomits every day or two.

Other changes that I've noticed is that his hair has turned completely gray -- has anyone ever heard of cancer causing hair to turn gray? Also, he lost 10 more lbs in the past 2 months (he started at 175-180 and is now down to 128).

He coughs frequently ... what causes that? Then last night, he was having severe pain in his scalp.

Despite all of this, I still try to convince him that he has many more years left. I could sure use some advice from someone who has already been through this with a loved one.

Are these normal cancer symptoms or a sign that his time is almost up?

The cancer center where he's been treated had a support group for caregivers, but it was only held on Thursday nights. I had already cut back to 2 nights per week so that he I'm there for him. I hated to ask for another one.

I'd sincerely appreciate any advice.

 

RE: End Stage? or Normal Symptoms? Someone shed some light

by LisaKG on Sat Jan 12, 2013 06:49 AM

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Hi. Hmm I honestly would seek a second opinion. I mean I am no expert on it, but I have never heard a surgeon say that they don't want to operate on a stage IV patient cause of the risk of it spreading. If you are a candidate for operation then it must be done. They say cutting it out is the only way to get rid of it. I know at stage IV the cancer has passed through lymph nodes to reach other organs but during surgery the surgeons usually remove any infected lymph nodes. this is where chemo is used to try kill off any remaining cancer cells that aren't visible to the eye. As for cancer that has metastasized to the liver, I know most surgeons will not remove it during surgery to remove primary tumor etc..a common procedure is chemo in hope it shrinks the mets in liver to be able to perform surgery. I think the reason for this is because the liver is a common area for reoccurrence they try to only remove a small portion of the liver in case it reoccurs in future (I'm not 100%, but that's just going off my research). I think it always depends where the mets are also located on the liver. I am going through this atm. I was diagnosed late oct last year stage IVb colon cancer age 28. It had spread to my ovaries and liver. They removed all cancer except my in my liver. I have just started second cycle of chemo. I am on capcetabine (xeloda). This is oral form. I don't know if it is the drug you are referring to, but I know it is quite new (been around for few years). So far I haven't had any side effects so that's good news. Had my ct scan the other day so I guess I'll find out when I visit my oncologist next if there is any improvement. I know stage IV sounds scary and it is! But there is hope and many people that see themselves as cured after 5-10 years plus free of the disease. But what played a big part in their survival was being a candidate for operation to remove the cancer. I hope some of this helps or makes you feel a little bit better :) but I honestly think you should get a second opinion. There are so many options, new treatments, and clinical trials. I'm not to sure how to answer about advanced cancer. To me stage IV is advanced but then there are different types of cancer cells. Some that spread fast, others that don't. Best of luck! Lisa.

RE: End Stage? or Normal Symptoms? Someone shed some light

by LisaKG on Sat Jan 12, 2013 06:51 AM

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Also I have found a lot of support and information from colon club. They have their own forum. It has been really helpful.

RE: End Stage? or Normal Symptoms? Someone shed some light

by Scarlett1123 on Sun Jan 13, 2013 12:58 AM

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I don't know anything about your situation, so have nothing to add to it.  I'm sorry.  My sister was just diagnosed so I am trying to get more information for her.

God bless both of you in this battle.  No matter what, you have helped him with your care, and I can't imagine anyone doing this alone.  He has you.  It is amazing to imagine there are children going through this.  How can that even be, that a child would have cancer and sometimes they don't make it.  Life is an amazing journey.  I pray that God helps your husband, and you.  Put your husband in God's hands and pray often.  Prayer can make all the difference.  Believe it. 

Scarlett

RE: End Stage? or Normal Symptoms? Someone shed some light

by SarahGrey on Sun Jan 13, 2013 01:10 AM

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On Jan 11, 2013 7:00 AM sarah06779 wrote:

My 49 year old husband was diagnose with stage 4 colon cancer in April of 2011. Mets to liver and 2 lymph nodes.

No action was taking against the tiny spots (at that time) on his liver. His doctor strongly feels that surgery on a patient with stage 4 cancer is not a good idea. Fear that the cancer may spread further. Also, he told us that cancer always comes back on the liver.

It's been 20 months now. My husband followed all the directions given and took all prescribed meds, however; despite suffering through 3 different types of chemo, he eventually gave up on them. After one stopped working, they'd infuse him with the next strongest chemo and different varieties of chemo drugs.

Around 3 weeks ago, the doctor informed us that there was a new drug available for colon cancer patients. This is a pill taken 1x a day for 3 weeks and then 1 week off. I am praying that this drug will work, but deep down, I have a strong feeling that it just won't happen, given how advanced his cancer has become.

The "tiny" spots on his liver have become large tumors. The cancer never returned to his colon.

Lately, he spends nearly 18 hours a day sleeping. We made an emergency visit to the ER last week since he was experiencing sharp pain in his bowels. He had been badly constipated for nearly a week prior to going to the ER. Earlier tonight, he threw up. He vomits every day or two.

Other changes that I've noticed is that his hair has turned completely gray -- has anyone ever heard of cancer causing hair to turn gray? Also, he lost 10 more lbs in the past 2 months (he started at 175-180 and is now down to 128).

He coughs frequently ... what causes that? Then last night, he was having severe pain in his scalp.

Despite all of this, I still try to convince him that he has many more years left. I could sure use some advice from someone who has already been through this with a loved one.

Are these normal cancer symptoms or a sign that his time is almost up?

The cancer center where he's been treated had a support group for caregivers, but it was only held on Thursday nights. I had already cut back to 2 nights per week so that he I'm there for him. I hated to ask for another one.

I'd sincerely appreciate any advice.

 

hi, i agree - please get a second opinion.  even if your husband is seeing a doc at a top hospital, go somewhere else and get a second opinion...

my husband has brain cancer and so im not familiar with what your husband has.  the coughing, though, had 2 things come to mind.  is it that he coughs when drinking liquids?  if so, then it maaaay have spread to his brain and is making swallowing difficult (not to freak you out - it's something my husband deals with and drink thickeners help).  if he randomly coughs, has the doc listened to his lungs recently?  maybe there is some fluid buildup?  again, these are JUST guesses - but he should be checked...  good luck and let us know what happens...  all the best...

RE: End Stage? or Normal Symptoms? Someone shed some light

by eternalife on Sun Jan 13, 2013 01:11 AM

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Hello Sarah,

Is your husband getting any meds to shrink the tumours in his liver? I am so sorry to hear about the weight loss. Is he able to swallow? What is his diet? Stage iv cancer is not pleasant news, my husband has stage iv esophageal cancer and we have been fighting this battle for almost 14 months. I was told he may expire in 18 months, although doctors do not know everything, I continue to worry about the initial prognosis. I will not stop trying to support and think positively. You need to do the same. Ask questions and do not give up. Try to get the weight under control and question the medical treatment . There are a lot of good stories on this site from persons with the same cancer, ie colon.. check it out.

Best to you and your family.

RE: End Stage? or Normal Symptoms? Someone shed some light

by sarah06779 on Sun Jan 13, 2013 09:05 AM

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Hi Lisa:

I am so sorry to hear of your diagnosis. It's always so sad when someone so young gets sick. My husband's was diagnosed around 20 months ago and I only learned tonight that there is such a thing as stage IV(a, b, or c). What do the letters mean?

Anyway, my husband is as stubborn as a mule and will not go anywhere for a 2nd opinion. There's a hospital that specializes in colon cancer which is located within 20 miles from our home. I've tried to convince him to go, to no avail. He flat out refuses to go (even for a little consult) b/c he's certain that there's a protocol and every doctor uses it.

The more I read here, the more I'm considering DRAGGING him down there. After all, I'm bigger than he is now. Immediately after he was diagnosed, I suggested using that hospital (New Britian General Hospital), but there is a cancer center 5 minutes from our home and he felt that because it's a cancer center it must be the best place to go for treatment.

At this point, though I don't want to stress him out. He's been so afraid of what will happen to me after he's gone. He's afraid that I won't be able to keep up the mortgage payments and be homeless with our 5 cats. (My two children are from a previous marriage.)

He's so small, weak, and suffering so much pain that he hates riding in cars -- every little bump makes him feel worse.

Another thing that bothers him is when we go to his oncologist and I ask questions. I don't know why. It's difficult to know what to expect when I can't talk openly with his doctor. Also, he keeps certain info from me. The last scan report that he let me see was from July and at that point, the tumors had grown considerably. They were more numerous and some had grown to around 1 and 1/2 inches long. At least one tumor was pressing into his gall bladder.

Since then, the only thing I know for sure is that they've grown and become even more numerous.

So, as much as I wish we had done things differently from the beginning, that time has passed. We can't go back. Our only hope now is the newest drug that he started taking a couple of weeks ago (Regorafenib). This drug is so new that it's not yet available in pharmacies. The cancer center had to arrange for it specially with our insurance. This drug kills the cancer cells of colon cancer.

Still, I'm afraid that he's too far gone for this to work for him, but the doctor wants to test it. Not sure why -- the brochure stated that it may cause liver damage as the 1st warning.

My best to you Lisa. I hope your story has a happier ending.

RE: End Stage? or Normal Symptoms? Someone shed some light

by sarah06779 on Sun Jan 13, 2013 09:09 AM

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Hi Scarlett -- and thanks so much for your advice. I am so sorry to hear about your sister. Hopefully they caught her in an early stage.

God Bless.

RE: End Stage? or Normal Symptoms? Someone shed some light

by sarah06779 on Sun Jan 13, 2013 09:22 AM

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Hi Sarah -- yeah. His behavior has changed drastically in the past couple of weeks. I know that the tumors in his liver have grown drastically -- last July some were 1 1/2 inches and they were more numerous.

One of the 1st signs of liver damage is loss of mental acquity and irrational behavior. His personality has been so differently than it used to be. He'll yell at me and at my kids often (my kids are 16 & 20) so they're old enough to understand why. I just give him a half hour to cool down and check in on him.

It's so hard to watch someone who really seems to be on his way out. Actually, I hope that he goes sooner rather than in a few more months -- a point where his pain will be unbearable. It's hard enough seeing him wither away, but I've heard horror stories about the pain in late cancer.

I hate cancer so much and it seems as if so many more people are diagnosed with it lately -- people of all ages. Maybe it has something to do with all the little electronic gadgets -- who knows. I know so many people who have passed from cancer in the past couple of years.

My best to you and your husband.

RE: End Stage? or Normal Symptoms? Someone shed some light

by sarah06779 on Sun Jan 13, 2013 09:49 AM

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Hi -- Yes. There is a new med that the doctor wanted to try on him. It's called Renfenobib(?) something like that. But his tumors are so large by now. 6 months ago, his scan report stated that the tumors were more numerous and some around 1 and 1/2 inches in size. That was last July and he hasn't let me see another scan report since. He's afraid that they'll scare me. No matter how I try to convince him that I'm tougher than he thinks, he simply doesn't want me to know all that is really going on with him. When I visit the doctor with him, he doesn't like it when I ask questions. That's why I've turned to you guys for answers and all of you have been extremely helpful and I so appreciate it.

Over the past week, he cannot eat anything. He can't hold anything down. This morning, for the first time, he vomitted up his cup of coffee. That really saddened me. It was one of the few things that we still did together -- have coffee and talk about things. Worse, on Wednesday, he had nothing to eat all day, but still threw up -- nothing but water.

His doctor is aware of his inability to eat, but didn't say much about it. We mentioned it at his appointment this past Monday, but the doctor didn't seem to be listening closely. Seemed as if he had something else on his mind.

He's a nice oncologist and is very smart, but I think he kind of "spaced" what we said. I'm going to call the office on Monday morning (didn't realize how late it is now -- I don't sleep much these days). I'll mention George's inability to eat. I'm sure one of the staff members will make the doctor handle the situation.

I have a very bad feeling that he's almost gone. He had given up on chemo from early Nov until mid-Dec when he began the Revenofib(?).  The directions are to take it for 3 weeks and then take one week off. He took it for 2 weeks and became so badly backed up (constipated) that he had to go to the ER on New Year's Eve. We were there until 10am the next day. They couldn't figure out what specifically was wrong, but treated the constipation with a med. that really worked fast. Now he's afraid that the new drug caused the problem (he's on his week off now). He hasn't decided whether or not to start taking it again.

I wish you and your husband the very best. I hope yours is in better shape. Enjoy any happy moments together -- you don't know how much longer you'll be able to enjoy time together.

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