really bad news on dad's biopsy...any advice from onc RN's?

zambezi, BSN, RN · Nov 12, 2004

I don't have any useful information for you, but I just wanted to say that I am sorry about your dad.

This site is a wealth of information...I am sure that someone will have some answers for you...

chemoqueen, BSN, RN · Nov 14, 2004

There are several chemo options. Your best info can come fro the Lymphoma and Leukemia Society.

Hi there,
I'm about to graduate nursing school (6 weeks left!) and my dad just got his biopsy results back showing Non-Hodgkins Lymphoma, Mantle-Cell Type.
They thought he was having an allergic response to something for the last 8 months (ALL his doctors thought this) until about a month ago when I woke up one morning and realized it had to be something else. Sure enough, a doc palpated 1 of his lymph nodes and then the symptoms all fit together: recurrent fevers, generalized itching, fatigue, etc.
I feel very uneducated about Lymphoma in general but am even more confused by mantle-cell. Everything I've looked up online is AWFUL showing an average of 2-5 year survival rate.
I guess I am hoping that an Onc nurses would be willing to share with me their knowledge or point me to a reputable site? I'm trying to prepare myself for what to expect. Oh and he is 62-years-old and has always been in excellent shape, healthy diet and exercise.
Thank you so much
Spec

mattsmom81 · Nov 14, 2004

I am also sorry to hear of your Dad and your post reminded me of how I felt when mine got his news of recurrent colon cancer with mets. I lost both my parents to cancer (not NHL tho, so can't comment specifically on that) and my heart goes out to you both.

From a family standpoint, try to encourage your father to enjoy his good health now by doing things that are meaningful to him now and during times of remission. Use your HCP's expertise,(they can advise you on his disease) but also support your father's decisions regarding treatment including when to stop if he wants to. And as time goes on, take things day by day and adjust as the changes come; including side effects from the chemo. Find some good resources and support systems. If at all possible, as time goes on respect your Dad's wishes if he doesn't want to go into the hospital or LTC. My sister and I (who do NOT get along) went to great lengths to work together to keep him at home, even though I lived 1000 miles away I flew back and forth to respite her during the last 6 months, then stayed permanently for the last month of my Dad's life.

It was very hard on my father to adapt to the toll the illness took in the later stage as he was a very independant strong man. I was very appreciative of my hospice team at that point and they were an invaluable resource to me and my siblings as our dear father lived his last 6 months of life.. But...there were also some nice family times together reminiscing, as my father looked back on his life, and he expressed some sentiments that really touched his children's hearts and I have some memories of some very sweet times as well.

A final thought: father shared with me he could not stand the thought of intractable pain so I became a staunch advocate for him... communicating with his doctors and later the hospice team to make sure he had plenty of options for pain, anxiety, rest, etc and wasn't feeling helpless in this regard.

Sorry so long but your post brought back many memories and my heart goes out to you. This won't be easy but you will find you are stronger than you think you are.

globalRN · Nov 24, 2004

I am sorry to hear about your Dad.

Mantle cell lymphoma is not curable with the therapies we have on hand.

You may buy more time with chemotherapy but it is unfortunately,not curative

You can look up resources :

Medscape.com.

National Cancer Institute,

the BC Cancer Agency has lots of online info.

akcarmean, LPN · Nov 24, 2004

Sorry don't have any information for you but; just wanted to say sorry to hear about your dad I will add you and your family to my prayer list.

Angelia

Ashy Larry · Dec 2, 2004

Mantle cell lymphona is wicked and I am sorry to hear about your dad. Lots of research and clinical trials are going on these days, especially with lymphoma/leukemia. Vincristine is a probable chemo drug he will be infused with. Other than that, there isn't a standard treatment that is curative to my knowledge.

renerian, BSN, RN · Dec 2, 2004

I agree with a previous poster or two. Slower progressing but more serious than other types. Usually male/average age 63...I don't want to post more as it is a very serious illness. PM me if you want more information as I don't want to upset you.

Many hugs,

renerian

sharann, BSN, RN · Dec 5, 2004

Hi Spec,

My dad was just diagnosed with NHL as well. He had this 5 years ago, so here we go again. I don't know what type yet, but I know according to his PET scan that it shows mutiple site activity and a renal mass. I have no advice as I feel lost at the moment as well. Just wanted to let you know you are not alone. My dad is 76 and in decent health(except for cancer).

Wishing you and your dad well. Keep posting.

Sharann

Nesher, BSN, RN · Jan 31, 2005

We have been doing stem cell transplants with folks with mantle cell NHL.

Check with major cancer research centers for the latest protocols. I can recommend where I work - Seattle Cancer Care Alliance - check the web site. Good luck to him - it is on his favor that he is healthy and active!

PennyLane, RN · Jan 31, 2005

My sister, too, was misdiagnosed. She had Hodgkin's, and for 6 months her HMO doc said she was just tired. She had fevers, unexplained weight loss, and extreme fatigue. How is your father doing?

SpecFuz · Jan 31, 2005

My sister, too, was misdiagnosed. She had Hodgkin's, and for 6 months her HMO doc said she was just tired. She had fevers, unexplained weight loss, and extreme fatigue. How is your father doing?

Thanks for all the input. My dad is doing pretty well. He just completed his 3rd chemo session of CHOP+Rituxan. They are going to do a PET scan next week which will hopefully show that it is working. Ultimately, they are going to do an auto stem-cell transplant on him I think. I definitely plan on researching a lot about this.

I passed NCLEX last week and am trying to decide about taking a job in Peds Oncology. Any thoughts?

Thx,

Spec