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No chemo due to malnourishment?? ANYONE?

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

Hi everyone, haven't been on here in quite a while. As a lot of you know, my husband Jason was diagnosed with Stage 4 colon cancer w/ mets to the liver, as well as other abdominal areas on Janurary 29, 2013. Without going into a lot of details, I'll just ask the question I really need answered & not go into all thats gone on leading up to the question. Today is day 30 of his hospital stay that began with an abscess on his liver, & a WBC count of 41,000, so very septic. Alot has gone on during the month, a lot of setbacks but here's the bottom line. He is very malnourished & too weak to re-start his chemo, the cancer has spread & they are saying the only way to start it again is if he gets enough nourishment to become strong enough to do so. I don't really see him ever getting to that point before the cancer wins & takes him from us. So, my question to everyone is this....have you or anyone you know ever been in a situation like this where due to malnourishment the chemo couldn't be continued, but then regained the nourishment & was able to get the chemo again? And if so, what was the outcome? Also, since he never had bad side effects from chemo infusions, do you think he would be able to tolerate the chemo pill Xeloda better than the infusion, maybe it wouldn't be as bad or as hard on him? I hope that makes sense, I know I'm grasping at straws but I don't want to lose him.....Thanks in advance for any help/hope you can offer!

Trubrit's picture
Trubrit
Posts: 5388
Joined: Jan 2013

I am so very sorry that Jason is suffering so much. 

Basically, what you are facing is a very hard decision and a very personal decision.

Is the fight worth it? I don't mean is your husband worth it, but is the fight worth the toll that it is taking on him? Is it even fair to put his body through such torture, for those extra months or years of life? What would be his quality of life? 

I know, this sounds very blunt and very harsh, but if I were in his postition, these are the things that I would think about. 

I have been very blessed, having little in the way of serious side effects so I cannot help you with the question about nutrition. 

My heartfelt prayers are heading your way. I pray for your Jason, and for you. I pray for the decisions that have to be made. 

Many blessings!

Sue - Trubrit

jen2012
Posts: 1607
Joined: Aug 2012

So sorry to hear about Jason.  Was just wondering about you guys the other day.  I just went through something similiar with my mom.  She was in the hospital all summer....she did not have cancer but was in end stage vascular disease.  Her wonderful surgeon knew what a fighter she was and said he would do all he could to help her.  After several surgeries her nutrition labs tanked.  We discussed a feeding tube in the nose, after several weeks of trying protein supplements.  She was getting 100 grams of protein a day along with other nutrients for over a month and her levels didn't improve.  We had to make the difficult decision to remove the feeding tube and she passed shortly after.  I know it was difficult for me to trust what the hospitalist were saying and I brought in a friend who is a doctor to review everything and agree with the hospitalist that she would not heal And her nutrition levels would not improve if they hadn't already.   I think that when the body becomes so malnourished it's really hard to take chemo, surgery or anything else that taxes the system.   

 

In looking back, I clearly could see she was dying, even though I was so angry with any doctor that tried to tell me that.  Chances are you know in your heart if you think he can pull through this.

Is Jason able to let his wishes known?   What do his docs think and do you trust them?  

 

I am so sorry you are facing this.  

janderson1964
Posts: 2215
Joined: Oct 2011

I am so sorry to read this about your husband and how devastated you must be. I don't know anyone who was in that situation and regained thier strength. I do know when patients are losing too much weight ensure is recommended. I even heard about people drinking milkshakes since it is easy on the digestive system and has a lot of calories and protien. I have been doing Xeloda for about 9 months now. It is basically the pill version of the 5FU 46hr pump. It is definately easier than any infusions that I have had. The only side effects I get is fatigue and my stomach will get a little agitated at times but not even close to nausea. A lot of people get hand and foot syndrome from it but I have been fortunate enough not to have that problem. I think it is worth talking to his oncologist about Xeloda. The doctors or hospital dietician haven't talked to you both about suggestions to get more nutrition in him?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I have no answers for you. I'm only recently on the board and am still learning so much. So I don't know if this will help at all. My brother has esophageal cancer and can't swallow anything so he's on a feeding tube. He was vomiting so much he was losing weight at a crazy pace. It has made a huge difference for him and he's actually gone from a life expectancy of about a month to six months. He's now walking around and is doing much better.

I sincerely hope that things will turn around for your husband. I often think that the only thing that would be worse than my battling cancer is having to watch my husband or daughter do it.

Lovekitties's picture
Lovekitties
Posts: 3356
Joined: Jan 2010

I am so sorry to hear that your dear hubby is at this point.

I have to assume that since he has been in the hospital during this episode that they have been doing all they can to keep up his nourishment.

I think all you can do is rely on what the doctors are telling you.

Chemo, in any form, is hard on the body.  To put it into a body already in distress would probably be against medical care standards.

There comes a time for each of us when there is no more to be done than comfort care, regardless of the cause of the body failing.

You and he are in my prayers.

Marie who loves kitties

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I was actually hospitilized for extremely severe malnutrition.  They had me contact family so they could say good-bye to give you an idea how severely bad off my body was.  They gave me TPN and lipids through an IVinto my port, for my nutrition, lipids are fats that your body needs. then had to access veins in hands for other stuff they were sticking in, two bloods transfusions, (small bleeding tumor in intestine) they won't use port for anything else but TPN, if he needs potassium infusions don't let them put that through arm IV as it burns like crazy, they have a form they will put in liquid and make you drink which is worse then the cure, or have them give it by unhooking the TPN for a minute or two.  Calcium is okay through vein infusion as well as the vitamin K is given via shot in belly.  What he needs all depends on how severe the malnutrition.

They said I need to resume chemo right away due to two of the tumors in my liver had grown to baseball size and the other 5 were increasing as well, and the one in the colon was the one causing the pain which caused me to quit eating in the first place without realizing I was getting worse, (they won't do surgery until I'm healthy enough to remove that tumor) but I needed to get healthy enough first To get chemo

And with the TPN's and Lipids, I apparently got well enough to do chemo because two days before I got out of there they tried it, and it worked well, my BMI was still below normal, but with many of the Vitimine and fats replaced within 7 days they had me back on chemo.

I still could barely eat when I left hospital, but I had my daughter from Ohio who had flown in to say goodbye, who decided to change her plane tickets, and refused to leave until I ate enough per day to satisfy her, so she stayed at my home and forced me to eat through guilt, it worked however and I started eating, little bites, but something three times a day, plus ENSURE or BOOST (make sure hospital is giving that to him twice a day), the nutritionist has to ask for it, but they will and it is very helpful for gaining weight.

Since the day I got my chemo at the hospital, I've been having it every week.  I am doing the liquid form of the Xeloda, my onc wanted to get it in fast, but he is now thinking of switching over to the Xeloda again, which I agree is better then the pump, my onc likes Xeloda because it last longer taking that chemo via pill form lasts longer.

but yes you can survive the malnutrition and other problems that brought it on!!!!

It will be difficult for him to eat regular foods (at least it was for me) because one of the deals is that you aren't really hungry and it's difficult to force the food down, but you will have to be firm with him or he won't eat.  I found fruits that were cut up for me to be good to start with, and for some reason I wanted pancakes, couldn't eat even a half of one, but it was something that was going in And something I desired.

I was hospitilized I think in the end of August, I went from a size 8-10 to a size 4/5, leaving there at 110, before malnutrition I was 154.  As of yesterday I am now up to 118 pounds.  And do the 5FUFOX.  My oncologist conferenced with many others before starting the chemo regime while I was in hospital getting other options and insight before starting the chemo there in hospital.

SO, I send very bit of good luck, loving spirits and a toast to him regaining his health quickly and he can get on chemo soonest.

Winter Marie

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

Losing too much weight during chemo and if I had dropped a few more pounds the doctor was going to give me a shot to either stop me from losing weight or somehow stimulate my appetite. I'm sorry I don't remember the name of it, I never got it as my weight stabilized. Marijuana works as an appetite stimulant and also an anti nausea drug, it was also the only thing that helped someone I knew at the very end. I'm so sorry you're in this situation, hope this helps.

Easyflip/Richard

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

You must be emotionaly and physically exhausted by now.  I truly do not envy your position and your husbands situation.  I have no advise to give. Nor have I been in your situation.  All I can offer is prayers for blessings of peace and comfort as you travel this difficult time.

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

im so sorry about Jason's situation. Erbitux and irinotecan messed up my stomach somehow and as a result of that treatment (which did nothing for me, btw) I was unable to keep,food down for several months and lost over 50 lbs. no  appetite And I threw up several times a day. I was pretty much only able to consume clear juice and (yuk) ensure. Luckily my doctors figured out what to do before it got too bad. I started on marinol, synthetic marijuana, and that really helped.  Also, it just took time for my digestive tract to heal.  

I took infusion chemo over the summer as part of a clinical trial, and now take stivarga which comes in pill form.  Drs were watching my weight.

hope your husband feels better and is able to eat and gain weight.  I found cutting a high-fat dark chocolate ensure with milk made it tolerable.

karin 

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I am sorry that you and Jason are going through this.

 

If you can not take in noutrition or hydration you have to stop chemo and heal. I have this argument with my doctor all the time. I just got out of the hospital because I got infused and my colon shut down. The Doctor tells me that chemo is not working well because I skip infusions.  I tell them then let's solve the issues so that I can take chemo!

 

Go with his gut feelings!  He knows iif he is healthy enough to tolerate chemo.  There may come a time where it is a quality of life choice.  No chemo and at least not feel beat down from chemo.  It will be a tough choice.  It is not giving up it is changing what is working and what is not.  Is the pain of chemo doing good or adding to the pain of cancer?

 

Best Always,  mike 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

So sorry he and you are going through this. Winter is a warrior, she gave you some great advice. Big hug...

coloCan
Posts: 1956
Joined: Oct 2009

about Juven and Anamorelin ;there's also something called BYM338,all for loss of weight and muscle(cachexia)

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Mike, years ago, IV vitamin C (helps prvent post surgical sepsis too) and glutamine helped my wife with toxicity-mucositis problems.  Her mucositis was never allowed to get to nausea problems.  She also added some zinc, magnesium chelates and niacinamide mixed in the powder for wound healing too.

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