diffuse large B cell Lymphoma of a follicular center cell origin

3 Posts | Page(s): 1 

diffuse large B cell Lymphoma of a follicular center cell origin

by Davidgiu on Tue Jun 16, 2009 12:00 AM

Quote | Reply
Hi out there,
I was diagnosed with diffuse large B cell lymphoma of a follicular center cell origin.
I am in early remission, but understand that the follicular component, which is slow growing, can not be cured. This in mind, I am looking for info on the long term symptoms/side effects of the disease itself.

I have itching that is maddening, especially on the scalp. Small bumps raise on the scalp and then start itching. Nothing seems to help it so far.
I saw a Dermatologist who prescribed a non steroidal topical ointment, which did no good. He informed me that this was a symptom of this type of lymphoma and would be a fact of life for me.

Anyone have any info on this?

Please e mail me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--put follicular center cell lymphoma in your message heading space.

Thanks

Davidgiu

RE: diffuse large B cell Lymphoma of a follicular center cell origin

by Robbie_R on Sun Aug 23, 2009 12:00 AM

Quote | Reply

Hi Dave:  I was diagnosed with follicular b cell lymphoma seven years ago. I had a baseball sized mass in the chest area wrapped around the aorta and attached to the pancreas and stomach. Operated but couldn't take out due to location. I still have some residual problems from the cancer and it's treatment, which was 6 rounds of chop and retuximab over 8 months, followed by 5 weeks of radiation 5 days a week. Well that's the setup to see if it compares to your situation. Everyone is different in where they are at with this.

As for short term problems after treatment they were: fatigue heavy at times, pain in toes and feet sometimes so tender a sheet on them was too much. Loss of feeling and numbness in fingers, hands, feet. A lot of phantom pain in other areas of the body. Fatigue. Hard to sleep because as soon as I would turn over in my sleep I would wake up from pain in shoulders, arms, and hands. Oh did I mention fatigue a lot.   Long term affects are less fatigue but still fatigue. You learn to manage your time. If I have six good hours today I don't plan more than for that. I take naps when I never used to before. Oh and thank God for stretch bands. That was the only thing I could use to exercise with for about the first 3 years. My muscles in arms and legs atrophied quite a bit for the first few years from non use due to the fatigue.

Don't be afraid because things don't work right. Sexual dysfunction is not uncommon among men no matter what the age. My body and mind were not on the same page most of the time. I had to really concentrate to get my body to due what I wanted because it doesn't react as fast to the thought as it did before treatment. I can remember having to think about walking instead of just doing it naturally. And once you learn that pain won't kill you, you learn to manage that also.

Psychologically you will have to deal with a lot of changes in your life whether it stems from inability to continue producing income, family dynamics changing because of activity restrictions, thinking ability, and learning to let others help you with things you used to do yourself. The National Cancer Institute (NCI) have excellent resource books that you can order for free in helping family to understand the changes that may take place. 

 

Now the good news. All things must pass. It does get better. It just may take a few weeks, months, or sometimes years. Even after all of this I was able after four years of just being there, to regain most of my health to the point to where I have been able to train for and walk in  two half and one full marathons, and am now training to participate in the Great Smokey Mt. Hike this coming Oct. 03rd, my 55th birthday. Understand that even before the cancer I had never done anything like this in my life before.

Your overall attitude and perception of your situation will have a lot to do with how easy you make this on the rest of your family. You may physically have the cancer but your family is living with it also. Cancer will try to seep into every aspect of you and your family's lives if you let it. It cannot be denied but it doesn't have to rule you.

Today my biggest problem is pain management, which I manage with medicine, chiro and massage. I did not go back to my previous job, but I have a small business I work from home, which is what I always wanted to do anyway. Other than the cancer it's been the best seven years of my life. I spend a good portion of every day with my family and/or friends. I play with my grandchildren often. Most of all I get to help a lot of people learning to deal with cancer and it's effects on one's life. That is the most rewarding of all. As soon as I was able to take the focus off of myself and put on helping others, my life gained value back again. Good fortune to you on your journey and learn to accept what you can't change and to change what you can. You will be a great asset to those whose fight is yet to be. Your fellow fighter, Robbie

RE: diffuse large B cell Lymphoma of a follicular center cell origin

by Davidgiu on Mon Aug 24, 2009 12:00 AM

Quote | Reply

Hey Robbie,

 Thank you for your kind words of encouragement and hope.  It is almost exactly 2 years since my first official diagnosis and I am readying myself for another roud of Rituxan, the third of 4 rounds over a 2 year period.

Just had a nasty scare as a lump appeared on my clavicle where the original presentment of the tumor was. Yes, my tumor was also about baseball size and entangled around nerves, arteries, carotid artery and the windpipe.  We shrunk it with RICE, 5 rounds and 22 sessions of IMRT radiation therapy.  Turns out that the lump there now is not a tumor. No clue why it appeared, but like you, my tumor was inoperable due to it's involvement with vital structures and so the single lymphnode that it was located in is oversize and has scar tissue which may have swollen for some reason.

 Yep, I know the problems with pain, still experience pain between the shoulder blades from the spasms caused by the lack of blood flow to that region for months as well as the pressure on the nerve centers there.  Sleep is always an issue, so fatigue is always a problem. Add to that the advanced heart failure I have due to a previous large heart attack.  Aw shucks, what will be next?  Ha Ha!  Got to keep a sense of humor about these things, right?

As for attitude, sure I get down once in a while, but I try to live my life as best as I can and have fun when I have the stamina to do so.  These types of events teach us that there are no guarantees of tomorrow and that you should live each day to the fullest possible, while still hoping and planning for the next.  

Keep smiling and thank you again for the e mail, it means a lot to me to find someone with very similar circumstances who is so far along on the  road to recovery.

 

David

3 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

CancerCompass Poll

How often do you use a mobile device (e.g., iPhone, Blackberry, etc.) to access the internet?

We care about your feedback. Let us know how we can improve your CancerCompass experience.