Mantel Cell Lymphoma

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Specializes in Assisted Living Nurse Manager.

Hi Everyone, I am curious if anyone can point me in the right direction. My father was just diagnosed with Mantel cell lymphoma stage IV. Now I have visited many web sites about this type of cancer. What I am looking for are statistics as far as chemo goes. My father so far has declined having any chemo. He is 71 years old and has many problems that are affecting his health at this time. His spleen is 19cm in size, he has an AAA of 5.2cm, he is diabetic and had bypass 5 years ago and his heart is not real strong as they say. I understand his stance, but I just want to make sure that he has all the information he needs to make and informed decision. What I am looking for is what are his chances of remission, what kind of chemo drugs do they use for this particular cancer. I have heard that remission can happen but since it is in his bone marrow his chances are less. Now I am not asking anyone for advice just where I might find the information I am looking for. If you know of any links that I may visit it would be greatly appreciated. You see I am a certified medical assistant and a student practical nurse who will graduate with my associates degree this May so my parents look to me when they have questions. My parents have asked me to find out what I am able. Any help is greatly appreciated. Thank you in advance,

nd_mom

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Specializes in Education, FP, LNC, Forensics, ED, OB.
Hi Everyone, I am curious if anyone can point me in the right direction. My father was just diagnosed with Mantel cell lymphoma stage IV. Now I have visited many web sites about this type of cancer. What I am looking for are statistics as far as chemo goes. My father so far has declined having any chemo. He is 71 years old and has many problems that are affecting his health at this time. His spleen is 19cm in size, he has an AAA of 5.2cm, he is diabetic and had bypass 5 years ago and his heart is not real strong as they say. I understand his stance, but I just want to make sure that he has all the information he needs to make and informed decision. What I am looking for is what are his chances of remission, what kind of chemo drugs do they use for this particular cancer. I have heard that remission can happen but since it is in his bone marrow his chances are less. Now I am not asking anyone for advice just where I might find the information I am looking for. If you know of any links that I may visit it would be greatly appreciated. You see I am a certified medical assistant and a student practical nurse who will graduate with my associates degree this May so my parents look to me when they have questions. My parents have asked me to find out what I am able. Any help is greatly appreciated. Thank you in advance,

nd_mom

Hello, nd_mom,

Try these links:

http://cancerweb.ncl.ac.uk/cancernet/100066.html

http://patient.cancerconsultants.com/nhl_cancer_news.aspx?id=35091

http://www.lymphoma.org/site/pp.asp?c=bfIKIVMIG&b=107712

I do hope your father does well and can improve. Our thoughts and prayers are with you and your family.

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Specializes in Assisted Living Nurse Manager.
Hello, nd_mom,

Try these links:

http://cancerweb.ncl.ac.uk/cancernet/100066.html

http://patient.cancerconsultants.com/nhl_cancer_news.aspx?id=35091

http://www.lymphoma.org/site/pp.asp?c=bfIKIVMIG&b=107712

I do hope your father does well and can improve. Our thoughts and prayers are with you and your family.

Siri, thank you so very much. These sites are absouletly wonderful and have answered alot of questions I was asking myself:) I also thank you for your kind words.

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Specializes in Education, FP, LNC, Forensics, ED, OB.
Siri, thank you so very much. These sites are absouletly wonderful and have answered alot of questions I was asking myself:) I also thank you for your kind words.

Good, nd_mom. I'm very glad you got the information you needed.

And, please keep us posted on his condition. :)

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Specializes in Vents, Telemetry, Home Care, Home infusion.

University of Penns Oncolink also helpful:

http://www.oncolink.org/types/subsection.cfm?c=10&s=36&ss=288

Having all the options is important in your dads decision making. Encourge him to formulate a living will if he doesn't have one.

If he forgoes active treatment, please consider hospice sooner rather than later as it will maxamize his quality of life and provide support for you and your mother. You are in for a journey of a lifetime. We can help you pointing you in the right direction and offering support and a shoulder to lean on. {{{HUGS}}}}

Just let us know how we can help.

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Specializes in Assisted Living Nurse Manager.

Thank you everyone for your help and the web sites. My dad has chosen not to do chemo, but the doctor spoke with him today about trying Rituxan. He said it is immunotherapy and the side effects are not as bad as chemo. My dad said he would try it, but if it is to hard on him he will stop. My dad also has a AAA that is 5.2cm and unstable. They want to fix this first, so he is going to see another doctor on March 7th to see what can be done. I live in North Dakota and my dad lives in Oklahoma. I have been keeping in touch almost every day. I want to fly out to see him before he gets to sick, so we can spend some quality time together. I am also in my last semester of a associates degree practical nursing program. I am a distance education student so I do clinicals every other weekend and I travel to Bemidji for IV cert. My days are filled with worry, school and I also work full time in an orthopedic department as a certified medical assistant. I would love to be able to be with him now, but I would have to drop my classes that cost me 2000.00 this semester alone. I guess I will keep trudging on and hope for the best. I feel the weight of the world on my shoulders and the tears just keep coming. Thank you for listening!

nd_mom

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Specializes in Education, FP, LNC, Forensics, ED, OB.

bless your heart, nd_mom. my thoughts and prayers are with you now during this difficult time. i'm sure your father is very very proud of you, too. please keep us posted.

{{{{{{{{hugs}}}}}}}}

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Specializes in Assisted Living Nurse Manager.

Well my dad went to see a surgeon on the 7th to see what options he had about his AAA. The surgeon was honest and told him that he would not make it through the surgery. His spleen is 19cm and is lying on the aneurysm. They would have to remove the spleen to get to it and this is not an option. My dad is going down hill fast, he says he feels like he has the flu, he aches all over, but no bad pain as of yet and he said he feels like his body is shutting down. He is on Norco right now for pain control. He sounds terrible on the phone all raspy and he gurgles deep in his chest. I have taken a loan out to fly home and to cover my wages for two weeks since I do not have any paid time off from work, because I have used it all for clinicals. I plan on helping my mom with getting my dad on hospice while I am out there. I am scared, I am flying home to see my dad for the last time:scrying: . I dont know how to say goodbye. I am hurting so much that I feel numb most the time. My poor mom lost her son my brother two years ago and she lost her mother my grandmother two weeks ago. Please say a prayer that god's strength and blessings be with us during this difficult time.

Thank you Siri for all your posts, your thoughtfulness has spread a ray of sunshine during this dark time.

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Specializes in Education, FP, LNC, Forensics, ED, OB.
Well my dad went to see a surgeon on the 7th to see what options he had about his AAA. The surgeon was honest and told him that he would not make it through the surgery. His spleen is 19cm and is lying on the aneurysm. They would have to remove the spleen to get to it and this is not an option. My dad is going down hill fast, he says he feels like he has the flu, he aches all over, but no bad pain as of yet and he said he feels like his body is shutting down. He is on Norco right now for pain control. He sounds terrible on the phone all raspy and he gurgles deep in his chest. I have taken a loan out to fly home and to cover my wages for two weeks since I do not have any paid time off from work, because I have used it all for clinicals. I plan on helping my mom with getting my dad on hospice while I am out there. I am scared, I am flying home to see my dad for the last time:scrying: . I dont know how to say goodbye. I am hurting so much that I feel numb most the time. My poor mom lost her son my brother two years ago and she lost her mother my grandmother two weeks ago. Please say a prayer that god's strength and blessings be with us during this difficult time.

Thank you Siri for all your posts, your thoughtfulness has spread a ray of sunshine during this dark time.

Hello, nd_mom,

I sent you a personal pm.

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Specializes in Assisted Living Nurse Manager.

I know I havent posted in awhile. I am finally done with school and will be taking my PN boards in 3 weeks.

I think my dad is at the end. He is starting to get hypotensive. His BP's are ranging anywhere from 105/56 to 76/46. His pulse is in the 80's. He is experiencing alot more pain in his abdomen and is unable to get comftorable. He refuses to take any morphine (I suppose this really signals the end in his mind) but he is taking 2 norco every 3 hours. He told my mom that his head feels foggy and he is dizzy all the time. He can hardly even make it from the chair to the bed anymore, but he is a fighter and he is fighting with eveything he has. My mom thinks we need to let him know that it is okay to go. I just do not know how to do this, the words are not easy to speak and I don't want to speak them. He always looks forward to talking to me on the phone, but last night he told my mom that he was just too tired. I understand but this is not him, he always talks to me and believe me he loves to talk! About 2 weeks ago he told me he had the feeling that he was sitting way up in the sky and that he was looking all around him and could see for miles. He said he wasnt afraid because it was so peacful. But, my mom came into his room and saw him sitting on the side of the bed just staring and she touched him on the shoulder and called his name and he said this is when he realized that he was in the bedroom. I know that people can experience episodes like this when the end is near. I know it is going to be soon and I am not ready!!!

Thanks for listening

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Specializes in Vents, Telemetry, Home Care, Home infusion.
. My mom thinks we need to let him know that it is okay to go. I just do not know how to do this, the words are not easy to speak and I don't want to speak them. .... I know it is going to be soon and I am not ready!!!

Thanks for listening

Thanks for the update. I've been in your shoes with my MIL and 2 grandmothers.

Last Thursday, my DS and I visited my parents night of his Sr Ball to show off him in a tux---took pictures with mom and dad. My mother end stage CHF/COPD told me she won't live to see him graduate; reminded her he graduates June 15th and it's only 2 weeks away. She had bargained with him and God 1 1/2 years ago that she would live to see him graduate and had refused Hospice at that time.

Even though I can see her subtle decline and periods of confusion, & had encouraged hospice, it was still a shock to hear her say those words.

What I learned to say is: It's OK to go.

We'll be sad and miss you but have tons of memories in our heart to carry us though the difficult days ---along with pictures.

Saying those words is a gift to your loved one and helps release them from this life making passage easier for them. From my hospice days, supporting families while they said those words, often family and I would comment later that you could see the patient visibly relax. Pain at times seemed to lessen.

If you can not summon the courage to say those few words, that's ok too. Letting go is the hardest thing --- remember death/divorce #1 stressors in our lives. From your post, I see signs that your dad is actively dying; it is a process and may occur in just few weeks, if that. Now is the time to say the things you DO want him to hear, send a card, funny story, piece of your heart. Doing so will help both of you through this event.

We here with our big shoulders when you need to vent/cry. Glad you find some comfort in venting.

Karen

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Specializes in Education, FP, LNC, Forensics, ED, OB.
I know I havent posted in awhile. I am finally done with school and will be taking my PN boards in 3 weeks.

I think my dad is at the end. He is starting to get hypotensive. His BP's are ranging anywhere from 105/56 to 76/46. His pulse is in the 80's. He is experiencing alot more pain in his abdomen and is unable to get comftorable. He refuses to take any morphine (I suppose this really signals the end in his mind) but he is taking 2 norco every 3 hours. He told my mom that his head feels foggy and he is dizzy all the time. He can hardly even make it from the chair to the bed anymore, but he is a fighter and he is fighting with eveything he has. My mom thinks we need to let him know that it is okay to go. I just do not know how to do this, the words are not easy to speak and I don't want to speak them. He always looks forward to talking to me on the phone, but last night he told my mom that he was just too tired. I understand but this is not him, he always talks to me and believe me he loves to talk! About 2 weeks ago he told me he had the feeling that he was sitting way up in the sky and that he was looking all around him and could see for miles. He said he wasnt afraid because it was so peacful. But, my mom came into his room and saw him sitting on the side of the bed just staring and she touched him on the shoulder and called his name and he said this is when he realized that he was in the bedroom. I know that people can experience episodes like this when the end is near. I know it is going to be soon and I am not ready!!!

Thanks for listening

Hi, nd_mom,

Just wanted to let you know that I've been thinking about you. You will find a way to say goodbye. I did. It is hard ~ one of the hardest things I ever did.

I'll continue to have you in my prayers as well as your father.

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