Need Advice

Hello. My mom, 54, was diagnosed with stomach cancer the first week in January 2008.  She had surgery on January 7th.  Her whole stomach was removed as well as her spleen, part of her pancreas and 12 lymph nodes.  With all this, her doctors expected her to do well and progress to chemo as well as radiation.  I live in a different state so the information I get is from her.  After surgery, she has still battled with nausea and also gas (burping all the time), throwing up and diahreah with cramping.  Sometimes all at once.  Sometimes, just the nausea.  She is very frustrated as she doesn't know what will make her sick.  At home, she became dehidrated and had to receive IV fluids.  She doesn't eat or drink because she can't tolerate to and doesn't get up much either.  She had tried to push through but nothing works.  Eventually, the doctors put her on a continuous J tube.  She doesn't eat and drinks very very little.  I am very worried.  She has already been postponed for starting chemo because she isn't strong enough to tolerate it.  Has anyone out there had this experience - problems with so many symptoms and nothing that the doctors give her alleviate them.  I am especially worried that she cannot seem to eat anything but a cracker here and there.   The doctors just tell her that she is having a much harder time than most and that this will take time.   Do ya'll think there is a lot she is not sharing with me?  Please help.  I feel so helpless right now as I have 20 month old triplets and a newborn at home 300 miles from my mother.  Yes, my hands are full but I want to be able to help my mother get better. 

 

On 2/9/2008 tripletmom wrote:

Hello. My mom, 54, was diagnosed with stomach cancer the first week in January 2008.  She had surgery on January 7th.  Her whole stomach was removed as well as her spleen, part of her pancreas and 12 lymph nodes.  With all this, her doctors expected her to do well and progress to chemo as well as radiation.  I live in a different state so the information I get is from her.  After surgery, she has still battled with nausea and also gas (burping all the time), throwing up and diahreah with cramping.  Sometimes all at once.  Sometimes, just the nausea.  She is very frustrated as she doesn't know what will make her sick.  At home, she became dehidrated and had to receive IV fluids.  She doesn't eat or drink because she can't tolerate to and doesn't get up much either.  She had tried to push through but nothing works.  Eventually, the doctors put her on a continuous J tube.  She doesn't eat and drinks very very little.  I am very worried.  She has already been postponed for starting chemo because she isn't strong enough to tolerate it.  Has anyone out there had this experience - problems with so many symptoms and nothing that the doctors give her alleviate them.  I am especially worried that she cannot seem to eat anything but a cracker here and there.   The doctors just tell her that she is having a much harder time than most and that this will take time.   Do ya'll think there is a lot she is not sharing with me?  Please help.  I feel so helpless right now as I have 20 month old triplets and a newborn at home 300 miles from my mother.  Yes, my hands are full but I want to be able to help my mother get better. 

You sure do have your hands full!  Your mom must be a very special woman to have such a caring daughter.  I am so sorry that your family is faced with such a battle.

Does your mom have a dietitian working with her to try and help her gain the ability to eat again?  Your mom needs the help and encouragement of her doctors/nurses for sure but, this board is a great way too to get advice from people who have experienced the same operation your mom has.  I am sure they will have more advice on how and what to start with in regards to diet. 

My mother turned 54 last year and had a very tough battle with stomach cancer.  I was with her through it all and I experienced how hard it was to adjust to such a different way to live.  She too had to use a j-tube for her nutrition.  I do know we had a dietitian who helped us and even a throat therapist who tried to help with my mother's swallowing.  Then there were the nurses and doctor's who had advice on how to help with all the other bodily functions that changed.  Its a lot to take in so, its good that your mom has the support of her family.  You may not be "next door" but, the fact that you are doing what you can, is a great help.

My prayers are with you.

Take care   

 

        

 

I'm so sorry that your Mom is having to deal with all of this. Unfortunately, all of those things are pretty common after the surgery. They DO get better...sometimes it takes a long time...My husband didn't start having more good days than bad days until one year out from surgery and chemo. It's super important that she stays hydrated...I'm not sure how much the J tube feeding will help with that. For the eight weeks that my husband was in the hospital with no food by mouth and only the j tube for nutrition they kept an IV for fluids in him as well. As the other poster said a Nutritionist from the hospital can really help at this point. After this surgery a lot of people have to relearn how to eat...the old favorite dishes can become enemies right now! I hope that things get better for your Mom! Amy

The problems you are describing are pretty much right-on-track for only being a month post-op. She will adapt to new eating habits. The surgery is major and recovery takes a while.

 You can bolace water through your mom's J tube. Just fill the huge syringe with water and push it through. It's time consuming but it helps with hydration and it's something she can do on her own.

 As for her postponing the treatment, there is probably an underlying reason she doesn't want to start chemo. It might maker he sick, might not. My dad had very little nausea with the chemo. They give anti-puke meds with the chemo so you don't feel the effects as badly. She may be having some pyscological issues too but the sooner the better. My dad's cancer is apparently identical to your mom's. (Stomach, spleen and pancreas portion removed. Lymphs also involved) and I think the chemo/radiation is what put him into remission. His cancer has since returned but there are no regrets about the agressive treatment and drastic surgury.

Hang in there. It get's easier. Keep us posted.

I misunderstood your post. So sorry. It is the docs who are postponing the treatment.

My appologies.

 

On 2/11/2008 Betz08 wrote:

The problems you are describing are pretty much right-on-track for only being a month post-op. She will adapt to new eating habits. The surgery is major and recovery takes a while.

 You can bolace water through your mom's J tube. Just fill the huge syringe with water and push it through. It's time consuming but it helps with hydration and it's something she can do on her own.

 As for her postponing the treatment, there is probably an underlying reason she doesn't want to start chemo. It might maker he sick, might not. My dad had very little nausea with the chemo. They give anti-puke meds with the chemo so you don't feel the effects as badly. She may be having some pyscological issues too but the sooner the better. My dad's cancer is apparently identical to your mom's. (Stomach, spleen and pancreas portion removed. Lymphs also involved) and I think the chemo/radiation is what put him into remission. His cancer has since returned but there are no regrets about the agressive treatment and drastic surgury.

Hang in there. It get's easier. Keep us posted.

Thank you for your post.  I am glad to hear that your father is in remission.  It gives me hope.  My mother tells me that when they "flush" the j tube with water, it makes her sick.  She experiences cramping and more nausea.  Was your father able to tolerate and try foods 5 weeks after surgery?  My mom just keeps losing weight, now 107 lbs, even on the j tube because she is literally not eating - but she does have the desire.  Everything she does brings on the symptoms.  Is it really too soon to expect more?  How long did your father receive nutrition through the tube?   

 

On 2/11/2008 tripletmom wrote:

 

On 2/11/2008 Betz08 wrote:

The problems you are describing are pretty much right-on-track for only being a month post-op. She will adapt to new eating habits. The surgery is major and recovery takes a while.

 You can bolace water through your mom's J tube. Just fill the huge syringe with water and push it through. It's time consuming but it helps with hydration and it's something she can do on her own.

 As for her postponing the treatment, there is probably an underlying reason she doesn't want to start chemo. It might maker he sick, might not. My dad had very little nausea with the chemo. They give anti-puke meds with the chemo so you don't feel the effects as badly. She may be having some pyscological issues too but the sooner the better. My dad's cancer is apparently identical to your mom's. (Stomach, spleen and pancreas portion removed. Lymphs also involved) and I think the chemo/radiation is what put him into remission. His cancer has since returned but there are no regrets about the agressive treatment and drastic surgury.

Hang in there. It get's easier. Keep us posted.

Thank you for your post.  I am glad to hear that your father is in remission.  It gives me hope.  My mother tells me that when they "flush" the j tube with water, it makes her sick.  She experiences cramping and more nausea.  Was your father able to tolerate and try foods 5 weeks after surgery?  My mom just keeps losing weight, now 107 lbs, even on the j tube because she is literally not eating - but she does have the desire.  Everything she does brings on the symptoms.  Is it really too soon to expect more?  How long did your father receive nutrition through the tube?   

My dad was able to try solid foods at about a month post-op. He never really regained his appetite though. Even with a plan with a dietician, nothing about eating was easy. He has been on the tube since the day of teh surgery. It supplemented the nutrition even while he was eating regular foods. The weight loss will be an ongoing problem. There is nothing that can be done. My dad is on 2000 calorie tube feeding and still loses about a pound per week.

I must tell you though, he is no longer in remission. The cancer is back and the prognosis is bad. He's with Hospice now and they are making him comfortable. As of the past Sunday he has chosen to discontinue the tube feeding. It makes his very uncomfortable and his body is rejecting it.

Don't give up hope. Your mom can beat this even if just for a while. Keep calling the docs about her nausea. They will find something that will work to keep her from feeling like she's going to throw up. Reglan is the best for that. Is she actually getting sick or just feeling sick?

 

 

On 2/12/2008 Betz08 wrote:

 

On 2/11/2008 tripletmom wrote:

 

On 2/11/2008 Betz08 wrote:

The problems you are describing are pretty much right-on-track for only being a month post-op. She will adapt to new eating habits. The surgery is major and recovery takes a while.

 You can bolace water through your mom's J tube. Just fill the huge syringe with water and push it through. It's time consuming but it helps with hydration and it's something she can do on her own.

 As for her postponing the treatment, there is probably an underlying reason she doesn't want to start chemo. It might maker he sick, might not. My dad had very little nausea with the chemo. They give anti-puke meds with the chemo so you don't feel the effects as badly. She may be having some pyscological issues too but the sooner the better. My dad's cancer is apparently identical to your mom's. (Stomach, spleen and pancreas portion removed. Lymphs also involved) and I think the chemo/radiation is what put him into remission. His cancer has since returned but there are no regrets about the agressive treatment and drastic surgury.

Hang in there. It get's easier. Keep us posted.

Thank you for your post.  I am glad to hear that your father is in remission.  It gives me hope.  My mother tells me that when they "flush" the j tube with water, it makes her sick.  She experiences cramping and more nausea.  Was your father able to tolerate and try foods 5 weeks after surgery?  My mom just keeps losing weight, now 107 lbs, even on the j tube because she is literally not eating - but she does have the desire.  Everything she does brings on the symptoms.  Is it really too soon to expect more?  How long did your father receive nutrition through the tube?   

My dad was able to try solid foods at about a month post-op. He never really regained his appetite though. Even with a plan with a dietician, nothing about eating was easy. He has been on the tube since the day of teh surgery. It supplemented the nutrition even while he was eating regular foods. The weight loss will be an ongoing problem. There is nothing that can be done. My dad is on 2000 calorie tube feeding and still loses about a pound per week.

I must tell you though, he is no longer in remission. The cancer is back and the prognosis is bad. He's with Hospice now and they are making him comfortable. As of the past Sunday he has chosen to discontinue the tube feeding. It makes his very uncomfortable and his body is rejecting it.

Don't give up hope. Your mom can beat this even if just for a while. Keep calling the docs about her nausea. They will find something that will work to keep her from feeling like she's going to throw up. Reglan is the best for that. Is she actually getting sick or just feeling sick?

 

I am very sorry about your father.  I hope that he is able to be comfortable.  You don't know how much I appreciate your encouraging words even in the midst of what you are going through. 

I don't think that she has tried Reglan for the nausea.  I will make sure this weekend as I am planning on visiting.  It's so hard being miles away and only being able to communicate over the phone.  Usually, she isn't even well enough to talk and I am left so empty and helpless. 

How long has your dad battled?  My mom is so full of hope that it scares me that day after day of this will break her spirit. 

 

My dad has been fighting this since october 2006. It has been quite a struggle but not in vain. No regrets. We took every opportunity to make him better and would continue the fight except that he is too weak. Remember that you can easily expend your resources when it comes to chemo and radiation. My dad couldn't take anymore even if he were up to it. The Chemo used for MOST stomach cancers is basically identical to the treatment used for breast cancer patients and it is intense.

Ask her about the reglan. It dissolves under the tongue and is very effective for treating nausea. There's no swallowing so she doesn't have to be intimidated by thinking it will make her sick.

Tell me more about her J tube. What kind of food is she using? There is a high calorie formula that my dad was on. It worked ok to control the weight loss. Maybe try half the reccommended amount and always do it at night and with her head elevated. You can also ask her docs about a pain med that will help her sleep at night. Maybe oxycontin or oxycodone. They come in a liquid form and maybe if she takes it an hour or two before starting the tube she will just sleep right through the feeding and won't notice that it makes her feel sick. She can just pour the medicine into the tube, flush it through, then start the feeding? I will reccomend though, if she's not actually throwing up or having uncontrolable bathroom issues, she shouls pretty much grin and bear the tube feedings. She will eventually HAVE to do something in order to start chemo. The chemo is a given in an angressive cancer like hers.

It sounds to me like you would really benefit from a visit to see your mom. You would probably feel a lot better once you saw her for yourself and she might like to visit with her grandbabies! Might do her spirits some good. Moday is a holiday!!!!!!!

 Keep your head up.

Hi, How is your dad doing? 

I did go visit my mother this past long weekend.  I think we benefited from the visit.  One good thing is that the nausea is better.  However, she is still not able to eat much at all.  A bite here and there and that is it!  Because of this, her tube feeding rate was increased and she has gained a couple of pounds.  We are still waiting to find out if she is well enough to go through chemo.  I can't imagine what kind of toll that will take.

How was your father, when in remission, able to function?  Was he still on the feeding tube during that time?  I am hopeful that we will get there but I am so scared.  It's truly a roller coaster of emotions.

I truly appreciate you answering so many questions for me since our parent's disease is so similar. 

God bless you and your father.