I can't just sit there and watch him suffer....Please advise.

I don't know what else I can do for him.  He originally had stomach cancer, so he had surgery to get part of his stomach removed then he received chemo to ensure that they got all the cancer.  Now a few years later, the cancer came back, CT scans were unable to see anything and Doctors only realized that it was cancer again because of his nagging symptoms: bloated stomach, couldn't eat properly, always vomitted after eating and finally they drained his stomach water, tested it and found cancer cells so the diagnosis was chemo.

 He was doing fine at the beginning, then later completely had a complete collapse where he couldn't eat at all because food wasn't going down so we went to the hospital, they did tests and said now the cancer is wrapping around his intestines, thus causing a blockage so food is not going down at all and not being absorbed. 

The Doctor says "nothing we can do" but they do a final test and they find out that it's not completely blocked so he is still ok at that point and he says the cancer did not get worse or better, but the chemo and cancer combined led to this "almost blocked" reaction and this chemo isn't working so he advises us he will be put on another type of chemo, but it's a low success rate.  I keep asking for where to get second opinions, alternatives, scrambling to find ways to cure him and Doctor informs us that he will be sending our files to a very reputable and established hospital specialized to treat cancer.  In the end, our Doctor says we have been rejected, again "there's nothing they can do" the hospital agrees with the treatment that our doctor prescribes, therefore we don't even get a consulation! 

So now, he is on this new type of chemo, an even worse reaction to it and through observation, it seems like he's vomitting even more now and they give him pills to stop the vomitting, but he says it's not working.  Now the vomitting just happens, whenever he eats or not eats, even when he's asleep, he wakes up suddenly to throw up.  He can't lie down, he can only sit up to sleep because he says the stomach acids come up his esophagus and makes him uncomfortable and want to vomit.  The stomach fluids are also making him cough because he says the fluid is pressing into his lungs, also making him short of breath.  He can hardly walk now either because his feet is all swollen and mobility is a problem.  He doesn't really talk and when he does, he's always angry, moody and I believe he's scared and depressed, but just keeps it inside.  He's really stubborn and always refuses to take pills because he insists that he throws it up anyway so there's no point. To me, he seems to be getting weaker by the day and he is in "give-up" mode. 

 The whole point to my story is, I don't know what I can do to make him more comfortable, happier, "prolong his life?"  I don't know what stage he is at and I really feel the Doctor's are useless because he's having all these side effects, I don't know if it's from cancer or chemo and there's nothing that Doctor's can give him to make him more comfortable.  We get rejected from a supposedly "BEST" hospital for a second opinion which I don't understand why because I do not think his case is one of a kind that they have no idea of what else to do. So here I am watching him suffer, getting worse day by day, unclear of his condition, don't know where to look for more answers for treatment or even to help reduce his side effects. Am I supposed to just sit here and watch him waste away before my eyes?  I'm sorry...I can't do that.  I refuse!

If there's anyone out there who can make any type of reccomendations for alternatives, second opinions, treatment suggestions, even support, pleeeeeease help, I most greatly appreciate it. 

Hi,

What a nightmare for you all .   If it's any help my Dad had secondary cancer in the stomach which blocked his opening to the intestine which then made him vomit all the time.  Dad was offered a stent.  He stuggled to cope with the healing process but once it had healed he was then able to eat most things again for a while. It was nice to see him enjoy food again.

Keep positive, ask lots of questions and my prayers are with you all.

from Gail (England) 

I can only somewhat relate to you. my husband has stage four esophageal cancer. After 3 different cocktails of 9 chemotherapy drugs, we have had no success. Though he has lost a lot of weight and experienced nausea and vomiting, our circumstances cannot compare to what you and your husband are going through.

A chemo nurse turned us onto an antiemetic that has been a godsend. Ask your doctor for a kytril patch. My husband couldn't swallow pills without throwing up and there was no way for the pills to work since he couldn't keep it down. the patches have been used in sweeden for years and the FDA has recently approved them for the states! my husband loves it though his nausea/vomiting hasn't been nearly as severe it would be worth a try.

Also, get your own files and cut out the middle man in getting that second opinion you want in person. I know our doctor has collaborated with numerous collegues but thats not the same as a second opinion. Go to the records department and get your file so you can get your face to face with a new guy. Thats what YOU need to feel better. My husband is treated at Texas Oncology at Baylor University Medical Center in Dallas.

On 1/23/2009 amanda3887 wrote:

I can only somewhat relate to you. my husband has stage four esophageal cancer. After 3 different cocktails of 9 chemotherapy drugs, we have had no success. Though he has lost a lot of weight and experienced nausea and vomiting, our circumstances cannot compare to what you and your husband are going through.

A chemo nurse turned us onto an antiemetic that has been a godsend. Ask your doctor for a kytril patch. My husband couldn't swallow pills without throwing up and there was no way for the pills to work since he couldn't keep it down. the patches have been used in sweeden for years and the FDA has recently approved them for the states! my husband loves it though his nausea/vomiting hasn't been nearly as severe it would be worth a try.

Also, get your own files and cut out the middle man in getting that second opinion you want in person. I know our doctor has collaborated with numerous collegues but thats not the same as a second opinion. Go to the records department and get your file so you can get your face to face with a new guy. Thats what YOU need to feel better. My husband is treated at Texas Oncology at Baylor University Medical Center in Dallas.

 

Thank you for your response.  I'm glad that you and your husband's circumstances is not as gray and I hope you two the best.

You mentioned that your husband went through 9 different chemo drugs, I'm wondering did the doctor keep prescribing different combinations as one combo failed to work? I ask because I really feel like our doctor doesn't seem like he wants to try anything.  My dad only went through one uncompleted cycle of chemo and then the doctor tells us that he should go on this new one because of the complications of the last chemo combo and basically if this doesn't work that's it.  I know all cases are different, but hearing from your experience that you went through 9 different combos makes me really doubt our doctor.

As you said, I'd like to cut out the middle person and get the second opinion, even for a piece of mind, but it seems like there's no loophole.  I'm desperately trying to look for one but the doctors keep telling me only doctors can refer you to the second opinion, no one will give you the time of day if you try to contact them yourself....go figure eh?

Thank you for your  recomendation of the patch, Im definitely going to ask  the Doctor about this. Anything that can reduce his side effects will help.  All the best to you both:)

On 1/23/2009 GailEngland wrote:

Hi,

 

What a nightmare for you all .   If it's any help my Dad had secondary cancer in the stomach which blocked his opening to the intestine which then made him vomit all the time.  Dad was offered a stent.  He stuggled to cope with the healing process but once it had healed he was then able to eat most things again for a while. It was nice to see him enjoy food again.

Keep positive, ask lots of questions and my prayers are with you all.

from Gail (England) 

Thank you for your response.  It's very comforting to know there is support out there and informative to know about other people's similar experiences, it definitely gives me hope and options to consider.   One thing I wanted to ask is, can you explain what exactly is a stent and how was it administered?  Under what circumstances would a Doctor consider using this?

 All the best to you, I am glad to hear that your dad is able to enjoy eating again, I just hope someday my dad will too.

A stent is basically a tube that gets inserted in the digestive track to "force" the path open so food can pass through. Look up self-expandable metallic stent.

My mom has had a drainage tube inserted into her stomach to get the stomach acid out before it makes her vomit. That may help him a great deal.

My husband is 25 years old and was extremely healthy before he was diagnosed. He could run 6 miles and weighed 195 lbs he was strong and had no clinical signs of cancer except some mild chest pain caused by his primary tumor. The chemotherapy and the nature of his cancer has allowed more time since it has grown by only a few cm in 7 months. His clinical status has deteriorated in the past few months and he now weighs 146 lbs. We don't have many more options but as long as my husband is willing our doctor says he will always give us treatment.

Truthfully, our doctor has said that if the current treatment doesn't work he would consider hospice. Like you said every case is different and many people have other complications that prevent the extremely agressive treatment my husband has been able to endure.

 It has been really difficult for me to accept that my husband didn't even want to take the current treatment becasue he is so tired. Treatment is so brutal on the body and you may be able to enjoy more time with your dad if he doesn't take treatment. I know it is terrible to think about but me and my husband are starting to have these conversations and we want to enjoy time with eachother, family and friends instead of living from appointment to appointment.

I don't know how involved you are in your dad's care but it seems like your on the front lines. I know what its like to be there, I sleep next to him!:) You need to take a vaction for you if you can. My dad tells me you have to take care of you so you can take care of him. My husband stayed with his mom for a weekend after he told me he was going to stop taking treatment and it was really good for the both of us to get away and come back to eachother. We were able to cool down and we both gained a better understanding of eachothers feelings. He is trying this one for me and because there are few side effects. 

I know my husband has issues letting me take care of him since he is suppose to be the provider and all. Your dad has a lot of physical frustrations and a lot is an extreme understatment on top of the emotional shame of having you see everything. I know how bitter and angry our loved ones can get but stay strong he needs you there and he loves you for being there!

Hopeful Angel:

I am sorry to hear about your husbands condition.  My wife was diagnosed with Stage IV stomach cancer in 2007 and is current in remission.  During this saga we have obtained opinions from 5 oncologists and have never had a problem getting in for these opinions.  We do it on our own and have prepared and sent a complete file of all her tests, treatments, scans, and doctors notes.  We feel that this file has allowed them to see the whole treatment schedule, although half the time it seems they are reviewing this 100 page book as they walk through the door.  Our treatments have mainly been directed by an Oncologist at Sloan Kettering in NY but they have been reviewed by others and our Hartford, CT based oncologist is the one who delivers the treatment. 

So far in our experience, these second, third, and fourth opinions have led to two big changes in her treatment.  One, since it was Stage IV we did not have surgery (our oncologist had recommended it); two, we have decided to stay on chemo since her diagnosis even though she has been in remission for over a year now (she remains on Xeloda today). 

It has been my experience that you cannot rely on your oncologist in all cases to make these decisions as they are working mainly on what research they can get their hands on.  There are many types of chemo drugs and I would be changing if I did not see the activity or tumors reacting after the first 3-4 cycles.

Wow, this cancer stuff really sucks and it takes alot of effort to drive the health care decisions and get the info you need.  Do the very best you can.  The decision to continue or move toward hospice support is a personal one, just try to make sure you have exhausted all your options.

With Care and Blessings,

Steve aka momwithkids

Dear Hopeful Angel.

I am so sorry to read of your experience.  This is such an awful disease.  Reading your words brings back many thoughts of when I had to watch my mom suffer.  I remember trying my best to stay one step ahead but, in reality I was a step behind, I think.

I am writing in part to let you know that my mom could not swallow with her stage 4 stomach cancer and therefore we had to find other alternatives for her medications.  It had to be in liquid form, patch or if nothing else very small pills that could be crushed.  Later, some of her meds were fed to her through her G tube which she had put in place in order to help get some nutrients.  I am not sure if any of these suggestions might help with the vomitting but, I thought I could at least suggest it as an option to try.

My mom had to sleep sitting up too.  It wasn't just due to the acid reflux feeling but, the pain she felt when lying flat.  I rented a hospital bed for her when she was at home so she could be more comfortable.

I wish I could offer you more.  I would love to have some great advice as far as treatment options.  I know there are some success stories and I hope yours will be one of them.

Please  know you are both in my thoughts and prayers.

Take care

Shannon aka "Keep Smilin"

I'm so sorry to hear of your horrible experience.  Have you looked at Mayo Clinic in Rocester, MN?...There is also one in Ohio and Florida.  My husband was diagnosed with stage IV stomach cancer on Jan 14, 09 and we were lucky enough to have a GI doctor that is an alumni of Mayo, so when we asked for a referral we received it immediatly and traveled there 2 days later.  They are wonderful, caring people.  He went thru a series of 6 tests and was referred back to our hometown to an oncologist that, so far, we have faith in.  He's only had one chemo treatment so far.  Please look into Mayo, if you haven't already.  They gave us so much hope.  But, of course, we are just beginning the battle.  God bless you and your husband.

Caroline