Someone please help us

rankind

My brother was diagnosed with Metastatic Pancreatic Cancer on August 16, 2010. The local oncologist said that he had 3 week to 6 months. He went to Moffitt and the doctor's there said that if he started this chemo treatment he could have up to 11 months. He is in so much pain, his stomach is so swollen he looks as if he could explode. Now his feet are swollen and he is going through I guess what are the stages that you have to go through to deal with everything that is happening to him. My brother and I have always been close and we have a very close family. He has had his first chemo treatment and it really wiped him out. He did not eat for days but did drink some of the nutrition drinks. His pain level is really high and he is on morphine non stop. Smells do not agree with him at all and all of the sudden he acts as if he does not want anyone around. Mom and Dad are taking turns staying at his house, he does not seem to have enough strength to do anything. Do we push him to get out because he says he does not have the energy to do anything. I don't want to judge his pain or energy level.

Noellesmom

just a suggestion
You know, hospice actually works with people who are not necessarily in the last stages of life but are facing a terminal illness.

It may be, rankind, that your brother and his family could use the services, if only to help you understand the best way to take care of him during this time.

You will all be in my thoughts and prayers. I do know how difficult this is.

rankind

Noellesmom said:

just a suggestion
You know, hospice actually works with people who are not necessarily in the last stages of life but are facing a terminal illness.

It may be, rankind, that your brother and his family could use the services, if only to help you understand the best way to take care of him during this time.

You will all be in my thoughts and prayers. I do know how difficult this is.

Thank you so much
I am so scared and do not know how to help anyone in my family. I have always been the caretaker and seem to really be floundering out there with no answers. I tried Hospice and they said that they would not come in as long as my brother is taking any treatment. Do you think this is just in the State of Florida? So we are kind of out there by ourselfs. It is almost as if the doctor's are just pacifying us. They are very grim.

Noellesmom

rankind said:

Thank you so much
I am so scared and do not know how to help anyone in my family. I have always been the caretaker and seem to really be floundering out there with no answers. I tried Hospice and they said that they would not come in as long as my brother is taking any treatment. Do you think this is just in the State of Florida? So we are kind of out there by ourselfs. It is almost as if the doctor's are just pacifying us. They are very grim.

hospice
Please look for a non-profit hospice agency in your area. I am not in Florida and don't know anything about a difference between states. I wonder if they understand the treatments are more for pain control and not for a cure?

Your brother's doctor's office might be the best resource to get the kind of help you need. Please don't hesitate to call them and ask. That is one of the many things doctors are there for.

Let us hear from you as things go along, rankind. You are not alone.

rankind

Noellesmom said:

hospice
Please look for a non-profit hospice agency in your area. I am not in Florida and don't know anything about a difference between states. I wonder if they understand the treatments are more for pain control and not for a cure?

Your brother's doctor's office might be the best resource to get the kind of help you need. Please don't hesitate to call them and ask. That is one of the many things doctors are there for.

Let us hear from you as things go along, rankind. You are not alone.

Noellesmom
Thank you so much for your advice. Jeff has another Chemo treatment on the 30th of September and I will ask about that.

Just talking with someone who has been in the same boat helps. I am very grateful.

ruthelizabeth

rankind said:

Thank you so much
I am so scared and do not know how to help anyone in my family. I have always been the caretaker and seem to really be floundering out there with no answers. I tried Hospice and they said that they would not come in as long as my brother is taking any treatment. Do you think this is just in the State of Florida? So we are kind of out there by ourselfs. It is almost as if the doctor's are just pacifying us. They are very grim.

Ask again
Hospice told us the same thing, BUT the dr. said that the treatment was just to ummmm hold things at bay or palliative. The hospice people told us that if the dr. said that, Don could continue to take that treatment while they dealt with the pain and side effects. For us it was a terminology issue and so for you the same approach might work. Ask someone. The drs. at hospice aren't dumb. They will be able to see that the treatment has a very low cure possibility. If your dr. is understanding, he can manage to get them to take you on.

Hospice was a blessing for us and it could be for you, too. Their ability to make someone comfortable is wonderful.

Try and see if that approach helps.

(And I'm in FL.)

grandmafay

Hospice, etc
Different hospices have different guidelines. Some do take patients who are still receiving palliative care. Others do not. Check with the dr to see if he/she has any suggestions. When your brother receives his chemo ask the chemo nurses for help. Our best source of information about side effects and care came from the nurses. Fatigue is one of the major side effects of most chemos. Whatever happens, the decisions about his care need to come from your brother. It is his life, and as hard as it is sometimes to let him make them, the decision must be his. That includes getting out or not. Only he really know how he feels.

The journey you and your family are on now is a difficult one. There are no words of wisdom that can make it easy. I lost my husband to colon cancer last year after a six year battle. Some days were good. Others were terrible. All you can do is let your brother know that you love him and will be there for him. Ask him what he would like to do. My husband chose to buy as much time as possible and went through some tough treatments. He knew that he could stop when he wanted to and that I would support his decisions. He was in charge. Hang in there. Fay

rankind

grandmafay said:

Hospice, etc
Different hospices have different guidelines. Some do take patients who are still receiving palliative care. Others do not. Check with the dr to see if he/she has any suggestions. When your brother receives his chemo ask the chemo nurses for help. Our best source of information about side effects and care came from the nurses. Fatigue is one of the major side effects of most chemos. Whatever happens, the decisions about his care need to come from your brother. It is his life, and as hard as it is sometimes to let him make them, the decision must be his. That includes getting out or not. Only he really know how he feels.

The journey you and your family are on now is a difficult one. There are no words of wisdom that can make it easy. I lost my husband to colon cancer last year after a six year battle. Some days were good. Others were terrible. All you can do is let your brother know that you love him and will be there for him. Ask him what he would like to do. My husband chose to buy as much time as possible and went through some tough treatments. He knew that he could stop when he wanted to and that I would support his decisions. He was in charge. Hang in there. Fay

Thank you
You are so right I tell him often that it is his world right now and we are just living in it. So he knows that all the decisions are his. I just can't hardly stand to see the changes that are taking place and to see the look on my mom and dad's face at times. We are all walking around trying to hide the deepest sadness we have ever felt. We did alot of crying with him the first couple of days but now we are trying to stay strong. thanks again and hope to hear from you again. This is going to be a horrible ride for him and we are in the car with him.

Unknown

rankind said:

Thank you so much
I am so scared and do not know how to help anyone in my family. I have always been the caretaker and seem to really be floundering out there with no answers. I tried Hospice and they said that they would not come in as long as my brother is taking any treatment. Do you think this is just in the State of Florida? So we are kind of out there by ourselfs. It is almost as if the doctor's are just pacifying us. They are very grim.

This comment has been removed by the Moderator

Tina Blondek

rankind said:

Thank you
You are so right I tell him often that it is his world right now and we are just living in it. So he knows that all the decisions are his. I just can't hardly stand to see the changes that are taking place and to see the look on my mom and dad's face at times. We are all walking around trying to hide the deepest sadness we have ever felt. We did alot of crying with him the first couple of days but now we are trying to stay strong. thanks again and hope to hear from you again. This is going to be a horrible ride for him and we are in the car with him.

Welcome
Hello Rankind and welcome to you your brother and family,
You are not alone here. We are always here for you. I agree with the others suggestions. Especially since they are in Florida, they know what is going on with hospice. You have to ask a lot of questions, get the answers, if you are not happy with the answers, get a second opinion. Be a squeaky wheel. This is a long, bumpy, roller coaster ride in this journey with cancer, but with God's help you will make it through. Do not give up! Keep us updated. We will be thinking and praying for you all.
Tina in Va

playfulplatypus

rankind said:

Thank you
You are so right I tell him often that it is his world right now and we are just living in it. So he knows that all the decisions are his. I just can't hardly stand to see the changes that are taking place and to see the look on my mom and dad's face at times. We are all walking around trying to hide the deepest sadness we have ever felt. We did alot of crying with him the first couple of days but now we are trying to stay strong. thanks again and hope to hear from you again. This is going to be a horrible ride for him and we are in the car with him.

Hospice for pain
Hospice down here in Florida has been such a blessing for us for pain management. They have been tweaking the meds slightly every week but the pain level has gone down immensely for my mom. As long as you use the words, palliative instead of cure, hospice will stay around.

rankind

playfulplatypus said:

Hospice for pain
Hospice down here in Florida has been such a blessing for us for pain management. They have been tweaking the meds slightly every week but the pain level has gone down immensely for my mom. As long as you use the words, palliative instead of cure, hospice will stay around.

Your help has been much appreciated
Thursday Jeff goes for his second round of Chemo and to be perfectly honest with you if he goes down this time as far as he has come down since his first chemo treatment, I don't know what will happen. The doctor at Moffitt said that this treatment is strong and that you have to be strong to withstand it. That is very scary to me because since his first treatment he has eaten very little, he has lost a lot of weight, his stomach is so swollen and tight and now his feet are swelling also. Wow I was really not ready for this ride that is for sure and I am finding that the doctor's are pretty much just saying what they think we want to hear.

Barbara53

rankind said:

Your help has been much appreciated
Thursday Jeff goes for his second round of Chemo and to be perfectly honest with you if he goes down this time as far as he has come down since his first chemo treatment, I don't know what will happen. The doctor at Moffitt said that this treatment is strong and that you have to be strong to withstand it. That is very scary to me because since his first treatment he has eaten very little, he has lost a lot of weight, his stomach is so swollen and tight and now his feet are swelling also. Wow I was really not ready for this ride that is for sure and I am finding that the doctor's are pretty much just saying what they think we want to hear.

suspicious
I can hear that you're a bit suspicious about the chemo plan at this point, and I don't blame you. But the only question is "what does Jeff want?" Regardless of his chances of success, it's his call. If he's always been a never-give-up kind of guy, don't expect him to give up now.

My father died of pancreatic cancer (secondary to another type), too advanced for intervention, and it took him down very fast, in a matter of weeks. Sad to say, if it's been two weeks since your brother's last chemo, what you are seeing now is more likely due to the cancer rather than the chemo.

Is there some type of blood marker that can measure the effectiveness of the treatment? Some oncologists like to go for broke with terminally ill patients when that's what the patients want. Profitable for them, iffy for patient, hard on family IMHO.

rankind

Barbara53 said:

suspicious
I can hear that you're a bit suspicious about the chemo plan at this point, and I don't blame you. But the only question is "what does Jeff want?" Regardless of his chances of success, it's his call. If he's always been a never-give-up kind of guy, don't expect him to give up now.

My father died of pancreatic cancer (secondary to another type), too advanced for intervention, and it took him down very fast, in a matter of weeks. Sad to say, if it's been two weeks since your brother's last chemo, what you are seeing now is more likely due to the cancer rather than the chemo.

Is there some type of blood marker that can measure the effectiveness of the treatment? Some oncologists like to go for broke with terminally ill patients when that's what the patients want. Profitable for them, iffy for patient, hard on family IMHO.

Jeff's World
Barbara you are right it is Jeff's decision and I back whatever he wants 100% this is just very scary I will tell you this he had a really good day yesterday he was almost playful which is something I have not seen in a long time. I love my brother and can't stand what this is doing to him and I also worry so about my mom and dad. This is very hard on them.

wifflefrog

Help!
I too am in Florida and my understanding is that yes you can Hospice care and the benefit is they have to put up the costs of all treatment being provided. If you are going through Moffitt Cancer Center definitely link with their social workers. You should have been assigned a person already, they should explore all these options for you. They provided good help with us, but defiitely push the issue.
Also I know locally we have a spokeperson for Pancreatic Cancer. I am in Brevard, if here I can get you a contact name otherwise use this resource for more help.

Pancreatic Cancer Action Network

Good Luck, this cancer is tough and my husband only experienced pancreatitis after a surgery and it was the worse I have ever seen him. The pain is extremely tough.

rankind

wifflefrog said:

Help!
I too am in Florida and my understanding is that yes you can Hospice care and the benefit is they have to put up the costs of all treatment being provided. If you are going through Moffitt Cancer Center definitely link with their social workers. You should have been assigned a person already, they should explore all these options for you. They provided good help with us, but defiitely push the issue.
Also I know locally we have a spokeperson for Pancreatic Cancer. I am in Brevard, if here I can get you a contact name otherwise use this resource for more help.

Pancreatic Cancer Action Network

Good Luck, this cancer is tough and my husband only experienced pancreatitis after a surgery and it was the worse I have ever seen him. The pain is extremely tough.

Pancreatic Cancer
An update, Jeff had his third round of Chemo yesterday and it really is making him sick today. I am sure that if this round runs true to form he will do a whole lot of sleeping over the next week. His weight loss is unbelievable, he has lost 68 pounds in two months. He had some really good days in this past cycle. I am really beginning to believe that he can beat this thing. I am finding documentation of more and more survivors with Metastatic Pancreatic Cancer and I am praying that my dear brother will be one of them. The chemo has really helped to centralize his pain and after they took all that fluid(10 liters) from his stomach he is so much more mobile. He actually cooked dinner Wednesday night and he has done alot more smiling and laughing. Wow I never thought I would see that again. We are so very blessed to still have him, when the doctor's originally said 3 weeks to 6 months I almost lost my breath. I don't want to lose sight of the seriousness of Jeff's condition but I sure pray that Jeff is one of the lucky ones and it sure feels a whole lot better to be positive than to expect the worse.

Thanks to everyone who might be out there to listen to a sisters feeling.

Tina Blondek

rankind said:

Pancreatic Cancer
An update, Jeff had his third round of Chemo yesterday and it really is making him sick today. I am sure that if this round runs true to form he will do a whole lot of sleeping over the next week. His weight loss is unbelievable, he has lost 68 pounds in two months. He had some really good days in this past cycle. I am really beginning to believe that he can beat this thing. I am finding documentation of more and more survivors with Metastatic Pancreatic Cancer and I am praying that my dear brother will be one of them. The chemo has really helped to centralize his pain and after they took all that fluid(10 liters) from his stomach he is so much more mobile. He actually cooked dinner Wednesday night and he has done alot more smiling and laughing. Wow I never thought I would see that again. We are so very blessed to still have him, when the doctor's originally said 3 weeks to 6 months I almost lost my breath. I don't want to lose sight of the seriousness of Jeff's condition but I sure pray that Jeff is one of the lucky ones and it sure feels a whole lot better to be positive than to expect the worse.

Thanks to everyone who might be out there to listen to a sisters feeling.

Thanks for the Update!
Hello Rankind and Jeff
So happy to see your recent update. Sounds like Jeff is having more good days than bad! If he can cook dinner, he is doing quite well. You have to both rejoice in these good days. Take it one day at a time. I am so happy to see that you did get into Moffit. That is one of the best places in Florida. With this round of chemo Jeff will get worse before he gets better, you both know that from the first round. Hang in there. Know that the sickness is from the cancer being killed. It will all be worth it. Just stick by his side, give him the comfort he needs. Keep thinking positive. Have a strong faith. Jeff is one of "the Lucky ones"....he has you as his caregiver!!! hugs to both of you. Stay in touch when you can.
Tina in Va

Noellesmom

rankind said:

Pancreatic Cancer
An update, Jeff had his third round of Chemo yesterday and it really is making him sick today. I am sure that if this round runs true to form he will do a whole lot of sleeping over the next week. His weight loss is unbelievable, he has lost 68 pounds in two months. He had some really good days in this past cycle. I am really beginning to believe that he can beat this thing. I am finding documentation of more and more survivors with Metastatic Pancreatic Cancer and I am praying that my dear brother will be one of them. The chemo has really helped to centralize his pain and after they took all that fluid(10 liters) from his stomach he is so much more mobile. He actually cooked dinner Wednesday night and he has done alot more smiling and laughing. Wow I never thought I would see that again. We are so very blessed to still have him, when the doctor's originally said 3 weeks to 6 months I almost lost my breath. I don't want to lose sight of the seriousness of Jeff's condition but I sure pray that Jeff is one of the lucky ones and it sure feels a whole lot better to be positive than to expect the worse.

Thanks to everyone who might be out there to listen to a sisters feeling.

Sounds good to hear
So happy you and your family are having some good days with Jeff.

Hang in there and keep praying!

Hugs!