Feeling curious today about what you all do or have done for weight gain and nausea! Been hearing different testimony on how to treat both, and intrigued!
Weight Gain - Carter hasn’t eaten in months. After first 3 rounds off chemo he would get an appetite at home a few days before going back to start all over. He hates the smell and taste of just about everything. He will sip on water all day, apple juice, and a little coke when he says he needs calories> Heard of a few things to help but don’t know anything about any of them. No matter what we do, or what we mix it with, he is not fooled by Pedia Sure, Boost, or Carnation Instant breakfast. He has a NG tube and is on Pediasure Peptide for 16 hrs a day usually. He pukes every single day especially in the morning. Nothing has helped. He is on TPN during SCT and no feeds which is ok when he is i pain, but I feel upset about him being on it a long time because of the long term effects and it makes him never want to eat or drink. Here is a list of new things that i am curious about. I appreciate all of your help!
Nausea is a constant problem. QTC prevents any meds during chemo or after. We are day plus 5 on 2nd SCT. He was just permitted Kytril every 12 hrs and going to add Benadryl back in today since his QTC has improved. He can’t have Ativan because it makes him a crazy mad man.
We will also be starting Radiation in a few weeks and very nervous about side effects of that, Any advice would be greatly appreciated!
Yes, the marinol!! It helps so much. We’ve been on iy since the beginning and it has helped tremendously with appetite and nausea. My son is also on Lorazepam which also helps with nausea. You should see an awesome change if you use the marinol. We haven’t had to have a feeding tube, but I have heard from different resources that liquid hope is amazing. My son is in the 3rd cycle of immunotherapy, and he looks like a prisoner from a concentration camp from all of the treatments. But every day he is getting better. I, too have tried everything and Jake does eat, even though now, like your son he hates smells and textures. We still have a lot of work to do. Don’t worry too much about radiation. My son came through it fine and I hope you will have a similar experience. I’m sorry you are also dealing with this.
We also struggled with this a lot, I think the two big things that kill the desire to eat are the treatment for the disease and the disease itself.
Remove both and eating is back to normal.
During chemo it felt like we could never shake the tube. But he did like a champion.
Depending on your radiation regime (full body irradiation vs local radiation) and the location of the treatment you may be lucky and have almost no impact on appetite. My boy’s appetite actually increased during the weeks of radiation. A few weeks after and we are having to tell him to slow down sometimes.
Going through tandem transplants must be super tough on you and Carter, but try stay positive, the tandem transplants are giving him the best possible outcome, and this struggle will hopefully just be a blip in your past. Once all the drugs are out of his system he will start eating again.
Thank you! Our son is allergic to Lorazepam, but we are hopeful that after cells recover that his overall quality of life will improve. The hospital here will not do the liquid hope because it is so time consuming. We are going to switch his feed formula though to something his tummy will tolerate better. No luck here on anything else. Great luck to you on the rest of this phase! I hope all of our babies can meet someday and show the world just how special they all are!