Update on Dad - PET Scan results

Jenny32

My dad has his PET last Friday and the doctor called me later that day to discuss what he saw. He said he did not see activity in his bones or liver. There is a distant Node that is showing some abnormal activity that may be related to a recent illness but cannot be ruled out as a cause for concern. Additionally, he has some fluid in one of his lungs, which was not mentioned by the oncologist but was later mentioned at the radiologist. I need to question that further as well. My understanding overall though is that the cancer has not spread as far as they can observe.

I took him in for his first radiation treatment today and then will continue to go every day for the next 6 weeks. Tomorrow we have an appointment to speak with the surgeon, and then on Wednesday my dad will have his port inserted.

The oncologist and the radiologist seem to be split on the idea of adding the feeding tube at this stage. The oncologist said he would like to see my dad take in solids orally for as long as he can and would assess him in two weeks for a feeding tube. The radiologist seems to think that it would be a good idea to put the tube in now because it may become too difficult to do later on. The radiologist was going to consult with the gastroenterologist on this. My dad did recently drop to 100 lbs but has gained over 2 lbs back as of this week. I have been strongly encouraging him to consume as much as possible, whenever possible, including drinking ensures up to 3 times a day. The doctor suggested 4 ensures a day but 3 is even pushing it for him.

Well that is where we are at right now...one day at a time. I have switched gears from an emotional mess and I am working on focusing on the life that is in front of me. It's only been a few weeks but already my life has been so greatly impacted. I once wanted to be a nurse and took the prerequisite courses for the program but opted not to go in that direction with my life once I had my first child. I have always had a strong interest in the medical field and my interest has peaked again after caring for my father over the last year. I am now reading a great book called The Emperor of All Maladies: A Biography of Cancer by Siddartha Mukherjee and it is so strange to say this but I have found some form of inspiration during this time, a light in the dark.

Unknown

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Wife of patient 50378

Jenny, your father is
Jenny, your father is blessed to have you has a daughter and caregiver. Just an observation, it appears that you have found your footing and are moving forward with great resolve. The news of this disease certainly can knock a person off balance or worse.

My husband had a difficult time drinking 4 Ensures a day at first. His calorie intake is up to 2700-3200 it is very difficult for him. This is his second week of Chemo and 5 days of Radiation. He has experienced minimal side effects. He does not have a feeding tube and is sustaining his weight plus gaining 1.5 pounds a week. So far so good. We have a long road ahead. Your father might really benefit from a feeding tube. “The squeaky wheel gets greased” Ask lots of questions, you might be able to arrange a care consult; your father’s Oncologist, Radiologist, Gastrologist, Docs all meet with you at the same time to discuss pros and cons of the feeding tube and other pending issues regarding your father’s treatment. Just, a thought

Take Jenny, I am praying for you guys!.

chemosmoker

GREAT CAREGIVER! GREAT WORK!! Go dad!
Jenny,

William said it. GET THAT FEEDING TUBE NOW!!!
Just imagine your dad loosing another 100 pounds. He lost 100 pounds. That is a PERSON.
Get the tube, you will be Soooooooooooo grateful later on.
Trust us all on this one.
BLINDLY.

As for those ensure. Yeah, that's SO easy. Try eating four McDonald's milkshakes a day and you will be sick of those in a day or two, and those are treats. Heck, eating Hagen Daz Ice cream four times a day is hard to do, anything that repetitive ism especially with only few flavors. Do the best you can, but don't beat yourself up over it at all. I do the best I can. I have been maintaining 140 pounds since August now, and I am grateful for that. I was 184 when I moved from Houston and I went to 124 in NO time flat before I was diagnosed. I actually thought it was because I went from drinking 5 Starbucks Latte's a day to none as there ARE no Starbucks here. Sad, I know, but...
I swore OFF the ensure and Boost and etc. I had had enough. Sorry. I would vomit if I had to drink ONE more. Just being honest. I know this isn't very supportive but that's from the patients point of view. Mine anyway.

Sounds like Dad might be really luck and a good candidate for surgery and recover from this **** disease! THAT is good news to read tonight!

We are all pulling or you and here for you too. Glad you have found a good book. I have read several since diagnosis in June. Love the Kendall APP for my PC. I download all the time now. Humor and cancer info. Fun. lol.

I pray for you both and hope the news continues to be good from here.

-Eric

cher76

Jenny,
I am glad to hear
Jenny,
I am glad to hear your father is holding his own so far, and that you have "switched gears". Sounds to me like you are dealing with in much the same way I have by learning as much as you can. I decided early on that "knowledge is power" and have kept that as my focus to make sure Rickie gets the care that he needs. Our doctor did not recommend a feeding tube until almost 9months of treatment had gone by even though we questioned him about it many times. Rickie went into this weighing 220 pounds at diagnosis, and that was after losing almost 40pounds before being diagnosed. By the time he received his feeding tube he was down to 150. Looking back I think that perhaps the doctor felt he would do better without all those extra pounds. His blood pressure has been great, and I think that the healthier weight has kept him free of many complications. Once the feeding tube was placed it did not turn out to be all that we hoped for in the area of weight gain though. His weight now hovers between 145 and 130. He is still somewhat able to eat by mouth and wants to do so. He has always been a man who loves everything about food. He has always loved to cook, enjoyed trying all kinds of cuisines, and watched the food channel long before it was "cool". So food was a big part of our lives. When the doctors ask him if he has an appetite he always answers " yes, I would to be able to eat!" But the problem is not that he doesn't want to drink 4 ensures a day, it is that he can't. His stomach fills up quickly, and if he drinks an ensure, he feels really full and the feeling lasts for 3 to 4 hours. The same is true of the formula. He is suppose to take 6 cans a day, and we are lucky if he can get 2 down. We were told to do 2 in the evening before he goes to bed, but he has never been able to work up to 2 cans at a time. So it's not that he doesn't want to, or is tired of eating the same old thing, it is simply that he just can't hold it all. Perhaps that is some of the problem your dad is having.
I found this link to notes of a power point presentation given in 2011 by a nutritionist at MD Anderson concerning nutrition in head and neck cancer patients. It explains the different kinds of feeding tubes and has pictures of each, as well as pros and cons for each. Rickie has a PFG tube, which this says is better for long term use, so perhaps that is why he was given it and not a j-tube. Being stage IV he will never have surgery, so therefore will have it longer than many others who have it taken out after surgery. He has had no problems with his as far as getting clogged or coming out or migrating. We have used it during chemo, and has never had any problems with vomiting. He has had it for 5 months now. Originally they did not offer a pump for it, but we are working on getting one now to see if feeding slowly through the night will help him with his weight. So you see everyone reacts differently, what is not good for one might be the best bet for another. Here is the link:
http://www.txsha.org/_pdf/Convention/2011Convention/2011SpeakerHandouts/Dekovich, Alexander - Multidisciplinary approach to Enteral Nutrition and Stricture Management.pdf

So glad to hear you have found a renewed interest in the medical field. Perhaps you will decide to travel that road again one day. Take care and keep focused, and remember Knowledge is Power!
Cheryl
Wife of Rickie, dx stage IV, with bone mets, Oct. 2010

Jenny32

cher76 said:

Jenny,
I am glad to hear
Jenny,
I am glad to hear your father is holding his own so far, and that you have "switched gears". Sounds to me like you are dealing with in much the same way I have by learning as much as you can. I decided early on that "knowledge is power" and have kept that as my focus to make sure Rickie gets the care that he needs. Our doctor did not recommend a feeding tube until almost 9months of treatment had gone by even though we questioned him about it many times. Rickie went into this weighing 220 pounds at diagnosis, and that was after losing almost 40pounds before being diagnosed. By the time he received his feeding tube he was down to 150. Looking back I think that perhaps the doctor felt he would do better without all those extra pounds. His blood pressure has been great, and I think that the healthier weight has kept him free of many complications. Once the feeding tube was placed it did not turn out to be all that we hoped for in the area of weight gain though. His weight now hovers between 145 and 130. He is still somewhat able to eat by mouth and wants to do so. He has always been a man who loves everything about food. He has always loved to cook, enjoyed trying all kinds of cuisines, and watched the food channel long before it was "cool". So food was a big part of our lives. When the doctors ask him if he has an appetite he always answers " yes, I would to be able to eat!" But the problem is not that he doesn't want to drink 4 ensures a day, it is that he can't. His stomach fills up quickly, and if he drinks an ensure, he feels really full and the feeling lasts for 3 to 4 hours. The same is true of the formula. He is suppose to take 6 cans a day, and we are lucky if he can get 2 down. We were told to do 2 in the evening before he goes to bed, but he has never been able to work up to 2 cans at a time. So it's not that he doesn't want to, or is tired of eating the same old thing, it is simply that he just can't hold it all. Perhaps that is some of the problem your dad is having.
I found this link to notes of a power point presentation given in 2011 by a nutritionist at MD Anderson concerning nutrition in head and neck cancer patients. It explains the different kinds of feeding tubes and has pictures of each, as well as pros and cons for each. Rickie has a PFG tube, which this says is better for long term use, so perhaps that is why he was given it and not a j-tube. Being stage IV he will never have surgery, so therefore will have it longer than many others who have it taken out after surgery. He has had no problems with his as far as getting clogged or coming out or migrating. We have used it during chemo, and has never had any problems with vomiting. He has had it for 5 months now. Originally they did not offer a pump for it, but we are working on getting one now to see if feeding slowly through the night will help him with his weight. So you see everyone reacts differently, what is not good for one might be the best bet for another. Here is the link:
http://www.txsha.org/_pdf/Convention/2011Convention/2011SpeakerHandouts/Dekovich, Alexander - Multidisciplinary approach to Enteral Nutrition and Stricture Management.pdf

So glad to hear you have found a renewed interest in the medical field. Perhaps you will decide to travel that road again one day. Take care and keep focused, and remember Knowledge is Power!
Cheryl
Wife of Rickie, dx stage IV, with bone mets, Oct. 2010

Well I decided to go with
Well I decided to go with everyone's advice and push for the feeding tube. I went ahead and bypassed the other doctor's and contacted the Gastroenterologist and made an appointment for tomorrow. We met with the surgeon today and he said that as my dad's health currently stands, he is not a candidate for surgery BUT that is subject to change if his health and nutrition improve. It would be so unfortunate if in the end he couldn't have the surgery based on that reason since there isn't any apparent signs of mets. That is why I think the feeding tube is so necessary since he is only 102 lbs. (Eric, he has lost about 25-30 lbs give or take over the last 4 months or so. ; ) Not a full person thankfully). The ensures are very filling for him so it is difficult to get that many down in a day. I don't think he is necessarily tired of drinking them yet. He has said that Ensure isn't all that bad so I think it is a matter of not having room in his belly to consume that many. Additionally, he prefers to drink a lot of coffee and I have suggested that we invest in a container of Whey protein and maybe add that in his coffee. I do know my dad's eating habits and I am pretty sure that he eats one major meal a day. And now with the doctor's appointments in the middle of the day, I am certain that once a day is the most he is taking in.

His port appointment was moved to today and so we went from the surgeon's office, to the radiologist, and now we are currently at the hospital. Then tomorrow we go to the radiologist to the gastroenterologist. I know everyone here is familiar with the routine. My dad just seems to be running on empty today. He mentioned early that he felt light headed. I put in a call to his doctor about reducing his blood pressure meds at the recommendation of the oncologist. Well they just took my dad back to the OR so I will be hanging out with my laptop here.

Thank you for all of your support! I am going to look at the different types of feeding tube options now.

Ericalynn

Jenny32 said:

Well I decided to go with
Well I decided to go with everyone's advice and push for the feeding tube. I went ahead and bypassed the other doctor's and contacted the Gastroenterologist and made an appointment for tomorrow. We met with the surgeon today and he said that as my dad's health currently stands, he is not a candidate for surgery BUT that is subject to change if his health and nutrition improve. It would be so unfortunate if in the end he couldn't have the surgery based on that reason since there isn't any apparent signs of mets. That is why I think the feeding tube is so necessary since he is only 102 lbs. (Eric, he has lost about 25-30 lbs give or take over the last 4 months or so. ; ) Not a full person thankfully). The ensures are very filling for him so it is difficult to get that many down in a day. I don't think he is necessarily tired of drinking them yet. He has said that Ensure isn't all that bad so I think it is a matter of not having room in his belly to consume that many. Additionally, he prefers to drink a lot of coffee and I have suggested that we invest in a container of Whey protein and maybe add that in his coffee. I do know my dad's eating habits and I am pretty sure that he eats one major meal a day. And now with the doctor's appointments in the middle of the day, I am certain that once a day is the most he is taking in.

His port appointment was moved to today and so we went from the surgeon's office, to the radiologist, and now we are currently at the hospital. Then tomorrow we go to the radiologist to the gastroenterologist. I know everyone here is familiar with the routine. My dad just seems to be running on empty today. He mentioned early that he felt light headed. I put in a call to his doctor about reducing his blood pressure meds at the recommendation of the oncologist. Well they just took my dad back to the OR so I will be hanging out with my laptop here.

Thank you for all of your support! I am going to look at the different types of feeding tube options now.

How is Dad doing tonight?
Jenny,
Glad you made appointment for feeding tube. It will help your dad get the nutrition he needs with out the pressure of eating if he does not have the desire or room for enough food. If you can I would highly recommend a visit to Moffitt -Dr. Kenneth Meredith is the surgeon that did John's surgery. With the feeding tube your dad can put weight on while he is going through chemo and radiation. Glad to hear from you again please keep us posted about your Dad. Let us know how the port went.
Your friend in Pinellas County
Erica

Jenny32

Ericalynn said:

How is Dad doing tonight?
Jenny,
Glad you made appointment for feeding tube. It will help your dad get the nutrition he needs with out the pressure of eating if he does not have the desire or room for enough food. If you can I would highly recommend a visit to Moffitt -Dr. Kenneth Meredith is the surgeon that did John's surgery. With the feeding tube your dad can put weight on while he is going through chemo and radiation. Glad to hear from you again please keep us posted about your Dad. Let us know how the port went.
Your friend in Pinellas County
Erica

He was doing well today.
He was doing well today. Thanks for asking : ) A little sore from having the port put in yesterday though, which made radiation a little uncomfortable for him but he managed just fine. We did make it to the gastroenterologist today too and discussed the feeding tube. I was happy that my dad did actually put on even a couple more pounds so he is up to 105 now. He even brought his ensure with him to drink on the way to his appointment and on the way back. I am going to have him do that from now on. We went ahead and scheduled to have the tube put in on Monday and so his first chemo treatment may be delayed until Wednesday. I am not even sure yet what type of chemo meds they have in mind for him yet. I will be getting that answer before next week though. The Gastroenterologist did mention that the Oncologist had suggested waiting a bit on the feeding tube but nobody else sees a reason for this. So Monday it is! I am just too afraid of waiting and then finding out that he is too nauseous to eat due to the chemo and risk him losing any more weight.

A little nervous about the redness around the port site but he is starting his antibiotics tonight. Additionally, the Gastro. said that should also help with the fluid in his one lung.

I do agree that a visit with Dr. Meredith in Tampa would be a good idea. I haven't scheduled that appointment yet as there are all of these other things that keep popping up. But after he is through with these treatments,the surgery will be a critical step for him and we will obviously need complete confidence in his surgeon. I will be sure to call and schedule the appointment with Dr. Meredith very soon. Thank you for the reminder... Another reason why I really need to buy myself a notebook to carry with me for appointments and such reminders. It would make it easier to stay on top of our next steps.

Thank you for again Erica!