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Large B Cell NHL

nhl2002's picture
nhl2002
Posts: 8
Joined: Mar 2004

I was diagnosed with Large B Cell NHL in 11/02. The tumor (thymus) was removed and the margins were good. The rest of the diagnosis showed no blood or bone marrow involvement. I had CHOP, Rituxen, and 20 radiation treatments.

The problem for me right now is that about the time my next doctor visit (every 3-4 months) comes along, I seem to get mentally down. Last night I came down with a severe case of the shakes, but no fever.

Has anyone else gone through this mind game? I'm pretty positive, but when I came down with the shakes I just new I was having a relapse.

My doctor said that in most cases of large B cell, if there is going to be recurrence it happens within the first 2 years. Well here I am coming up on 2 years and I seem to be causing myself all this mental anquish. I didn't feel this bad while I was going through treatment.

I see my oncologist in 10 days. This is crazy.
Thanks, Rich

AuthorUnknown
Posts: 1563
Joined: May 2006

Rich,
My mother-in-law was diagnosed in Nov. with large cell B stage four.
She has not been sick but she has lost a lot of hair. She gets Rituxin and
Cytoxan
Epirubicin
O....Vin Christine
Prednisone. CEOP.
She has had four treatments and gets Leukine for white blood cells every day after chemo for 10-12 days.
Hope you are doing better.
If you need to chat, yell at me. I don't usually get online until after 9:00 EST because we only have one line, but I will get back to you.
Hang in there. My mother died of ovarian cancer and now I am caring for my mother-in-law and I don't know anything, but if you just need to chat, holler at me.

nhl2002's picture
nhl2002
Posts: 8
Joined: Mar 2004

So far so good. My oncologist says I'm still in remission (2+ years). The results from the CBC hasn't come back yet, but I'm optomistic.

Thanks for the support and kind thoughts. The best to all, Rich

LDenton09
Posts: 2
Joined: Feb 2009

Wow. My father was diagnosed and started on chemo November 17. He literally went from being totally okay to not able to feed himself within 10 days. The treatments that your mother-in-law is receiving sounds exactly like what my dad is going through. My father is 75. He's been through 3 rounds of chemo so far and has had the spinal taps with preventative chemo administered through them.
We can't seem to keep him out of the hospital. He gets totally dehydrated from the ongoing diarrhea. He also can't eat well because his mouth is as dry as the Sahara. Have you or your mother-in-law found anything to help or have had a problem with this?
Since there are so many different kinds of cancers, and they each pose different challenges, it's great to find people who are dealing with the exact cancer that we're dealing with.
Likewise, please feel free to vent or share with me. It's hard being a caregiver and feeling like it's all happening in a void. I'm in CST.

BetsyAnne
Posts: 2
Joined: Feb 2005

just found this and had to reply. I know exactly how you feel prior to dr. appt. I was diagnosed 3 years ago and have been in remission for over two years. I know what you mean by the head games. I have asked my dr. if I could cease the check-ups since I have such anxiety because of them.
I wonder how we can get past this. I went through treatments with a very positive attitude. As crazy as it sounds, I am having more trouble with being a survivor. Go figure!
What is the answer?

tomboymom
Posts: 2
Joined: Nov 2004

I can totally relate, and I've only been in remission a few months. I originally had a tumor in my chest and have twinges in my chest all the time. I had a clear PET scan just 6 weeks ago, but recently am having some pain in my chest like it was in the beginning. I have no other symptoms, but must admit I am freaking out some. I get anxious about everything and am always looking for signs of recurrence. I am embarrassed to be so terrified, especially when I (praise God) responded so well to CHOP from the first treatment. I'm glad I'm not the only one who gets so worked up about check-ups, tests & the future in general.

Linda in Oklahoma City

TwoMorrow95's picture
TwoMorrow95
Posts: 1
Joined: Feb 2004

I was diagnosed in 2/2001 with large b cell NHL. Remission diagnosed in 10/2001 after CHOP and radiation. Clear scans since then (3.5 years now) - but I ALWAYS get scared/nervous when it comes time to do my scans. I am getting teary eyed just thinking about scheduling my scan (which I am overdue for). My pulse races, I try to "read" the attitudes/actions of my scan technicians - trying to figure out if they saw anything bad. Every little thing that goes wrong (colds, aches, etc...) near the time of my scans makes me feel SURE that IT is back. This is ridiculous! I too am more anxious now than when I was undergoing treatment. All I can do is pray for peace when my anxieties act up. It's comforting to see that "we" all seem to experience these same emotions. Rich, I'm glad to read your scan is clear. Stay positive (look who's talking! I need to take some of my own advice!)

~Rebecca

Donnie28557
Posts: 1
Joined: Feb 2005

I was diagnosed with large b cell NHL in Sept. 2000. Went through CHOP and radiation also. Had some complications due to low white blood count and picked up an infection so I had to prolong my CHOP regiment for about 6 months. Was anounced to be in remission in June 2001. Scans have been clear and I am as healthy as can be. And yes, I to get a knot in my stomach everytime my Oncologist appt. is near. And everytime I have a ache or sorness in the same area I start to panic. But so far everything is good. Keep thinking positive, and if you need to talk give me a hollar.

ozzie2
Posts: 17
Joined: Feb 2004

To Rich and all the others here..Thanks for being normal..I also thought it was just me..when I get near to the hospital..I feel ill, start crying ..oh brother!not to worry when I have the Ct scans as I pick them up when ready and can read the results..hehe..But I have to be honest here ,by the time I have my next scan it will be over twelve mths..and I am terrified..I want it NOW!see I have been fighting this since 2000..and have relapsed three yrs after 1st dx..had DHAC and Beam and an autologus transplant ,will be two years this april..and I have only been in remission since July last year!The weird thing was the Pet I had in December 03 after the treatment showed that the NHl was still there,same with the Ct scan in Jan 2004 said the nodes had increased..then the scan in July 04 nothing! very confusing..so hang in there we are all different as the above shows you..I was told it is pretty certian at some stage that you will relapse! but then who can really tell? so much is happening in the treatment of NHL so there is hope for us all..
God Bless you all and Rich great news on your results..PS ..oh yes I had Large Diffuse B Cell NHL..but it was everywhere..stage 3 and intermediate..Had just chop when first DX,no Rituxan(MabThera as it is called here,as it wasn't in Australia then..well no trials had been done here .so it wasn't allowed)

litespeed
Posts: 2
Joined: Sep 2008

Read your comments on stem cell transplant for NHL large B cell. I have completed Rituxan- CHOP treatment and 6 spinal cord preventive injections of methotrexate. All tests show remission. I have had three consults in different cities (New York, Boston, New Haven) and 2 suggested autologous transplant now rather than waiting for possible recurrence. I'm interested in severity of side effects and fatigue ( how long) before I make my final decision to proceed now or wait

scrummy3
Posts: 10
Joined: Oct 2008

Hi,
First of all, I hope this finds Rich and everyone else doing well. In terms of anxiety, very common for me. As a friend says, "it is always cancer for you" meaning even a cold is cuase for me to start thinking recurrence. That said, I've used and found helpful, deep breathing and other progressive relaxation techniques.
I was diagnosed August 2004 with diffuse large B-cell nHL, with splenic involvement, but stage two because it was localized. Eight treatments of CHOP-R and Neulasta later (no radiation), I had a near complete response - some nodes still large, but spleen was back to normal (albeit a bit beat up).
Was doing pretty well the first 2-3 years with clean PETs and good CTs. Last June, CT showed nodes in other areas and in the original site. Follow up PET showed uptakes beyond normal but not alarming, so they biopsied a node in the neck. Came back as a normal reactive node. Decided to wait and see and re-PET in 3-4 months.
Early this month, PETs still the same, so now they want to go for a node in the gut (where it all started) via lapro. They actually took two from there after initial diagnosis four years ago. The Doc suggests waiting is an equally valid option. I'm getting ready to schedule the surgery, but while I'm all for more tests, I'm alsotrying to research other underlying causes and treatments. I'm thinking stem cell work may be in my future, but I'm also just wondering about "sticky" nodes and possible drug interactions.
Prior to June, I had a really bad upper respiratory infection and was treated with Levaquin. I've read some stuff that said Levaquin can cause lymph nodes to enlarge but I've also heard of nodes that never decrease or stay large longer times.
Anyway, just a collection of thoughts this morning. Looking to see if any of this sounds familiar to others.
Have a good one.

---
John

SuzieQZ
Posts: 3
Joined: Feb 2004

Dear Rich

I have been in remission for 5 years Oct 22nd....I still get scared and very depressed when it is time for my CT Scan and my Bone Marrow....I know exactly what you are going through.

I don't think it is uncommon to be fearful at all. People that have never had Cancer just don't seem to understand why it is still so nerve racking. Keep plugging, and enjoy every moment of every day.

nhl2002's picture
nhl2002
Posts: 8
Joined: Mar 2004

Thank you all for the support and kind words. If the scan next month is clean, it’ll be 6+ years w/o cancer. They say it’s a cure after 5. But I wonder if any of us really every get ‘cured’ of everything that cancer can cause. Certainly the emotional ups and downs last a lifetime. The cells may be gone but the memory lasts forever. God bless.

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