Update on Rickie- - Feeding tube success!

cher76
cher76 Member Posts: 292
in Esophageal Cancer #1
We returned to Houston on the 18th for another go at inserting a feeding tube and a PFG (percutaneous fluoroscopic gastrostomy)feeding tube was placed using fluoroscopy. I know everyone has been telling us we should ask for a j-tube, but we consulted with 5 different doctors (2 here at home and 3 at MDAnderson) and they all felt that this type of tube was the best for Rickie at this time. Since he is Stage IV and not a candidate for surgery, and not having a laparoscopy to look at nodes or anything, this was the least invasive way to go. The procedure lasted about 30 minutes and he was awake the whole time. The tubing is much small than the one they had shown us for a PEG tube,only sticks out about 3 or 4 inches from his abdomen, and is totally unnoticable under his shirts. The care at the insertion site has been simple and it has healed well enough already that he does not need to wear a bandage over it anymore. During the healing process a small tunnel is created by the body around the tubing and after 6 weeks it will be healed so well that he will be able to go swimming if he so desires. So far we have not had any problems with the actual feedings, knock on wood! The only drawback is that it is gravity fed, so at this point it is taking up to an hour to complete a feeding. We are taking it slow so as not to create any nausea, and are working on speeding it up. He is still eating by mouth and supplementing with the feeding tube. The great news is that he has gained 10 pounds since we started this 2 weeks ago!
Last week he started his new chemo regimen prescribed by our doctor at MDA and administered by our doctor here at home. He is still getting the same drugs, Irinotecan and Erbitux, only in higher doses and less frequently. Instead of going in every week, he will only go every three weeks. This should allow him more "good days". Basically he had been off the chemo for 4 weeks as we had gone to have scans and the feeding tube placed etc, so when he went in last week it really through him for a loop. He has never had really bad side effects (other than the severe diahrrea he had in March)but this time he has been having increased salavation (like you get just before you vomit) and headaches. He also went back to the dr. the day after chemo and received an infusion of magnesium and iron as well as a Nuelasta and Sandostatin shot. So we think that maybe all that is contributing to the yucky feeling he is experiencing.
Today is our son's 33 birthday and his wife has planned a party for him at our local baseball game. We are hoping to attend. We think getting out of the house for a little while might make him feel alot better. Hope everyone enjoys their Memorial Day holiday and remembers all those who have given so much so we can be free to live in this great country!
Cheryl

Comments

  • sangora
    sangora Member Posts: 213
    #2
    Going to the Ball Game
    Glad to hear that the tube is working well. I too am a Stage 4 EC person and have a peg tube which praise the Lord I don't now have to use very often. Getting out of the house always makes me feel better and more positive. I say to my friends now, that I have to get my fun wherever I can whenever I can. You all have a great day with your family.
  • BMGky
    BMGky Member Posts: 621
    #3
    Glad you got the tube
    Hope it works well for you. While I usually push for jtube as opposed to a stent, it sounds like that circumstances suggest that a jtube was just not what you needed. As a matter of note, it sounds like he needed a very specialized tube and placed just so. The doctors do know best. I was just voicing our preference from individual circumstances. It seems this battle with EC while similar in some aspects, it is very much unique to the individual. It was great you knew what to ask. This way you know you've made the best choice. Getting needed nutrition will help your husband feel better. Best wishes in your continued battle. Hope you have a great time at the game. Happy birthday to your son. Mary
  • chrissiebass
    chrissiebass Member Posts: 56
    #4
    BMGky said:

    Glad you got the tube
    Hope it works well for you. While I usually push for jtube as opposed to a stent, it sounds like that circumstances suggest that a jtube was just not what you needed. As a matter of note, it sounds like he needed a very specialized tube and placed just so. The doctors do know best. I was just voicing our preference from individual circumstances. It seems this battle with EC while similar in some aspects, it is very much unique to the individual. It was great you knew what to ask. This way you know you've made the best choice. Getting needed nutrition will help your husband feel better. Best wishes in your continued battle. Hope you have a great time at the game. Happy birthday to your son. Mary

    good news
    I am so happy to hear good news for you both!! I do not post a lot but am on this site daily and always "check in" to see if you have a new post. Your husband looks a lot like my dad!! Thinking of you and your family.... hoping you were able to make it to the birthday party!

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