Diffuse Large B Cell Lymphoma

nikkig43 said:

Thank you so much Jim. This
Thank you so much Jim. This is all so new, it's very nice to here from someone who has already been down the road we are heading. I'm so happy for you and your continued remission! Thank God!
I appreciate so much your specific points regarding treatment. I agree that humor and a positive attitude are very important.
Do you have any advice for me as the support person? I don't want to make light of the situation, but on the other hand, I don't want to be too serious either. I sometimes feel that I make him feel worse by doing too much for him or being " too nice" ( Hee Hee ). I think it makes him feel like he is really sick.
( We will be celebrating our 25th anniversary this year and we have 2 daughters. They are both in college. Our oldest lives at home with us. )

Thanks again Jim! Take care.

nikkig43 said:

Forgot to mention that his
Forgot to mention that his tonsil is involved and a couple of surrounding lymph nodes in his neck. Otherwise his PET scan was clear. He is being treated at the Seattle Cancer Care Alliance. He felt really good until he started treatment. Now, he feels tired, frequent headaches and his joints and jaw ache. His first chemo infusion was 6 days ago.

nikkig43 said:

Thank you all so much!
Thank you Jim, Liz and Sue. I'm very grateful for all of your feedback, ideas and advice. I hope to be of support to you too, if needed in the future.
And, yes we do live in Washington State, about 40 minutes NE of Seattle. We have been to Yakima many times. My husband's parents grew up and married there. He still has many relatives there
I will let my husband, Joel, know about this site and encourage him to join. Good idea.
He is feeling good today. I hope you all are too.
Take care, Nikki.

DennisR said:

I had NHL stage 4 about 13
I had NHL stage 4 about 13 years ago and had resection surgery followed by R chop chemo and was NSD for 8 years. I had a recurrance in 2008 which required further chemo (different than R-Chop)until the tumor disappeared,followed by a stem cell transplant in Feb,2009. (Which is a whole 'nother story) So far I'm NSD again and doing very well. The chemo your husband is getting causes the joint and bone pain in between treatments. He will probably start getting some shots to promote his white cell production between suceeding treatments which in turn worsens the bone pain etc, it can be very difficult, but it kills the cancer and goes away when the treatments are completed, usually 8 sessions. I got some relief from accupuncture therapy while doing the chemo.

jhale17 said:

Care Giving Hints
I have notices that over the years I have had treatments that detail things change in how they administer the same meds. I received CHOP in 2000 in a twenty minute infusion. Here, today they infuse CHOP in one and one half hours and use Rituxan with it. I had six CHOP infusions and twenty-four radiation treatments to my neck. What I am trying to point out is that treatments changes as they learn more from treating patience. If you have questions about the options available to you then a second doctor’s opinion may ease your mind. Your primary care physician may be of help to you on providing an explanation of the overall process.
The care giving of a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic in 2006 that took her life after eighteen months of doing everything to prolong her life. In 91 I was like you, knew nothing about cancer and assisted her in the same way I did for any other illnesses.
It wasn’t until I got cancer that I understood what one feels when they say you have cancer. Most survivors I talk with agree that the shock of being told is devastating and your life is changed forever. You lead your life as survivor from the day you’re diagnosed and for the rest of your life.
The treatment period is where you as the care giving needs to understand that the side effects of each treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatments. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting places, walking, and reading. When I was in CHOP I could not watch the fast action of a football game on TV.
Eating is important issue to deal with and with the treatment in the neck area swallowing may be a problem. If the patient has periods of tastelessness, where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. I was sitting next to a survivor once waiting for an injection and he said he was happy because last evening he was able to eat a backed potato. Try a variety of foods to see if you can find those that please the palate. What good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.
I have been given what they call miracle mouthwash to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It is like what the dentists does with an injection plus heals the mouth.

jhale17 said:

Care Giving Hints
I have notices that over the years I have had treatments that detail things change in how they administer the same meds. I received CHOP in 2000 in a twenty minute infusion. Here, today they infuse CHOP in one and one half hours and use Rituxan with it. I had six CHOP infusions and twenty-four radiation treatments to my neck. What I am trying to point out is that treatments changes as they learn more from treating patience. If you have questions about the options available to you then a second doctor’s opinion may ease your mind. Your primary care physician may be of help to you on providing an explanation of the overall process.
The care giving of a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic in 2006 that took her life after eighteen months of doing everything to prolong her life. In 91 I was like you, knew nothing about cancer and assisted her in the same way I did for any other illnesses.
It wasn’t until I got cancer that I understood what one feels when they say you have cancer. Most survivors I talk with agree that the shock of being told is devastating and your life is changed forever. You lead your life as survivor from the day you’re diagnosed and for the rest of your life.
The treatment period is where you as the care giving needs to understand that the side effects of each treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatments. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting places, walking, and reading. When I was in CHOP I could not watch the fast action of a football game on TV.
Eating is important issue to deal with and with the treatment in the neck area swallowing may be a problem. If the patient has periods of tastelessness, where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. I was sitting next to a survivor once waiting for an injection and he said he was happy because last evening he was able to eat a backed potato. Try a variety of foods to see if you can find those that please the palate. What good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.
I have been given what they call miracle mouthwash to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It is like what the dentists does with an injection plus heals the mouth.