Diffuse Large B Cell Lymphoma

Treatment
Hello,

I just had my 4th treatment of R-Chop, and I have the same type of Lymphoma, Stage 1. It hasn't been easy. I've found that sucking on ice during the red drug ( I can't remember it's proper name), prevents mouth soreness and a sore jaw. You have to suck on the ice about 5 minutes prior, during, and 10 minutes after.

Chewing gum 10 minutes before bed, helps a little bit with dry mouth throughout the night.

Also, the smell and taste of saline got stronger in my mouth after the first two treatments. I don't like lemon so I drink juice while they flush.

This journey hasn't gotten any easier along the way. When energy levels are up, do what you can but don't push it, because you might pay for it the next day. You have to pick and choose what activities are most important and what you want to accomplish. I had a ton of energy one day so I went non-stop for 12 hours. Well i haven't done that in about a month, and the next day I didn't have energy to do anything at all.

There will be days when it's really frustrating-not being able to go about your normal regular activities. Take the time to rest, and do the things you wouldn't have been doing other wise-read a book, pray, etc.

LarrySurvivor6 said:

6 time survivor
My most recent cancer is large cell non hod neg. I had chops over a year ago. in remission being monitored. Told what I have is rare a low survival rate. In Each cancer I have has been rare and stats say I shouldnt have it. Dr, shake their head. I just tell them I like making them look good. Also I think I am on record in Akron and Cleveland that I am waliking history with 6 seperate cancers. You have to keep a positive attitude, good doctors, strong family and very srong faith in God. I would not have made it through this with out their support. stay strong, Larry

If # 7
Larry, if number 7 comes around,, ask drs about treanda w/rituxin,, my wife is in relapse for nhl ,not sure exactly what and this chemo has a track record in Europe..

jimwins said:

Welcome
Sorry you have to be here but you'll find a wealth of support here.

I was diagnosed with stage 2 Diffuse Large B Cell Lymphoma in April of 2011 -
primarily in the small intestine/mesentery area. I read your other post
so I know your husband is going through RCHOP treatments.

Please know there is hope and this type of lymphoma is very treatable and
considered curable (cure= 5+ years in remission).

I was treated with R-EPOCH which is very similar to your
husband's treatment. My treatment/infusion was given 24/hrs per day over
a period of 4 nights and 5 days about every 3 weeks. My "about me" pretty
much covers things as well.

I was very fortunate in that I handled things fairly well and was considered
a "model patient". Don't get me wrong, it was no picnic and I had surgery
early on which interrupted treatment and there were some "not so comfortable"
things during/after the surgery (removed a small secion of my small intestine).
Treatment is scary at first but by around cycle 3 it will be more routine and
easier to deal with. Anxiety is normal and medication for that helped me
tremendously (Atavan).

My experience and likely for your husband (as I said, I was pretty fortunate
in that I didn't have many major side effects):

1. Loss of hair - probably around cycle 2/3 so get ready for that - I buzzed
my head after cycle one. You can make this fun with creative hats/dew rags, etc.

2. Progressively worse fatigue as the treatments continue.

3. Prednisone side effects: Mood changes (may get cranky and/or emotional), difficulty sleeping until the prednisone wears off, ravenous appetite while prednisone is
impacting his system.

4. Netropenic period - there will be a period when blood counts will be down
and you have to avoid crowds, sick people and raw foods. For me, it was usually
about a week. Post treatment Nuelasta/similar to help the bone marrow raise blood
counts to acceptable levels - joint and bone aches for 3-5 days after
"the shot" - pain medication helped with this.

Positive attitude and humor are free weapons in this WAR.

It would help if you provided more info in the "about me" section of the profile.
I just visited my oncologist on 2/6 and "yoohoo!" - I'm still in remision or
NED (no evidence of disease).

Again, there is hope and others will chime in soon to offer support. You can
come here anytime, ask questions, vent, etc. That's what we're here for.

Hugs, positive thoughts and wishing you the best,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
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big B cell
Jim,, we re hoping that for my wife nhl,, we re waiting on results wednesday Mar 14th to see what exactly she has.. but our dr says the newest kid on the block used for yrs in Europe with good results,, so if yours ever does make a reappearence ask about the drug TREANDA W/RITUXIN chemo treatment.. We hve a whole bunch of hope on this one,, hopefully the 3rd time is the charge.. Jan..

jhale17 said:

Experience
At first I did not know anything but to follow the direction of my primary care doctor. Later I found that it was best for me to become my own advocate. I had to acquire knowledge and have input to making decisions on the options available to me and when necessary get second opinions.

I am a survivor for over eleven years with four occurrences of diffuse large B cell Lymphoma. At first I was told that I would be inconvenienced and if the cancer came back it would be easily treated. So far they have been right.

Understand every patient is different I have friends that have had only one occurrence and it was over twenty years ago. Let’s hope this one occurrence is the case for you.

Here is a brief run down on my four treatments.

First Occurrence July 2000 to Jan 2001

At base of tongue, treatment was out patient throat biopsy, 6 CHOP chemo, & 24 radiations, results - Remission

Second occurrence July 2004 to Dec 2004

On inside of throat, treatment was throat biopsy and six three-days stays in the hospital, chemo RICE chemo treatments, results - Remission

Third recurrence June 14, 2007 to Oct 2007

In upper abdomen lymph nodes

Installed Titanium Mini-Port, July 12, 2007

Treatment Jul & Aug 2007, chemo, EPOCH+R with two 5-day hospital stays

Radioimmunotherapy, Zevalin injection treatment Oct 23, 2007, results Remission

Forth occurrence started Dec 29, 2011

Location, in abdomen lymph nodes, chemo Treanda +R six treatments, ongoing, just completed third treatment. Good prospects for remission.

tellme
jhale17; now it sounds like what you being treated for is in the same ballpark as what my wife has,, we find wed exactly what and how bad, but it is in behind the floating intestines and is a vry sml speck on the pet scan.. her doc too is suggesting TREANDA W/RITUXIN one day a week over 4 weeks,, from what ive read on a doc report on utube is it has had a 90% effectiveness rate in Europe.. and one of the members of this site used it when it first came out and has been in remission 2 years now,, NOw thats the numbers I want to hear,,
Hows it been so far?? No hair loss?? they say its a lot milder the the rest of the chemo's but better results.. good luck jan..

nikkig43 said:

Hi mnovs3
You have just finished your 4th treatment? My husband is Stage II. The cancer is affecting his left tonsil and a couple of surrounding lymph nodes . He is only scheduled to have 3 RCHOP infusions, then 3 weeks of radiation. How many RCHOP's will you have? Will you also have radiation?
Thanks for the good tips. I will pass them on to my husband. I hope you finish treatment soon and get back to your old self. Take care,
Nikki.

good luck
nikki; i will tell you more about treanda when i find out more,, there is a lot of info on u-tube.. and good results in Europe.. Jan..

Shannie76 said:

My Husbands results are in:
It has been a long wait and 3 biopsy's later we now have a diagnosis of Large B Cell Non Hodgkins Lymphoma. Long story short I first noticed the lumps in my husbands neck Aug 2011.

He took it better than I did today from the ENT Dr. Im trying to be so supportive but I am so scared too. I don't really know what to expect I mean you hear all of these different medical terms for cancer but honestly I really didn't know the 1st thing about it & I didn't even know if I should tell the kids about it until I at least understood what it is. I do know that we have alot of appointments now fover the next 2 weeks.

As for my husband he acts like its nothing & he will not talk about it because I don't think it has really hit him yet all Iknow is neither one of us know what to expect now. We seen the Oncologist( which I have never heard of before) on Mar 5th. Then he has another appointment where they are doing some sort of injection on Mar 12 then on the 15 we go back so they can do a scan.. & We also have a CT scan that is being scheduled asap.

I have zero idea what half of this means & I think this is what really scares me I don't know what to expect now or why they are doing an injection on 1 day then scanning 3 days later??

Thank You
Shannon

Hi in August2009 I was
Hi in August2009 I was diagnosed with large B cell Non Hodgkins Lymphoma Stage 3. I had a lump in my neck. Went to DR. and he gave me antibotics to see if it was just an infection. When it didn't go away he had me have a CT. Long story short I had cancer. (The scan helps the Drs decide the best course of treatment. All the tests are given so that the right treatment will be provided.) I had the tumor remove and started RChop 17 days after first diagnosed. I also had a shot that helped my white blood cells. I only felt bad for 2 days (on 5th day) of the 21 day cycle. I was very scared about getting sick during my down days(days when my immune system as at its lowest - 10-14th day) The cancer didn't scare me as much as getting sick and not being able to complete treatment on time. Keep a positive attitude. I named my cancer Gladys so that I could talk about it with less stress. After 2 treatments Gladys was gone. I told the Dr. that Gladys had left the building and we only had to make sure she had not left anything behind. She had not and I am in complete remission which is the best I can be. The reason they wait 3 days is to see if the injection is doing what it is suppose to do. I took 2 treatments before I was scanned and then took 4 more before I was scanned again. For the first year I was scanned every 4 months (had Dr. appts too). I am now still going to the Dr. every 4 months but are scanned once a year. After my next scan if everything is okay I will visit Dr. every 6 months. Just be there for him. He will have days when he feels down but that is to be expected. His side effects will differ after each treatment. Read up on the effects of Chemo to see what possible side effects he may have. Everyone is different. I was lucky and didn't have any bad side effects. Don't be afraid. Ask questions LOTS OF QUESTIONS even if you think you are being a pest. You have the right to know what is going on. Go to every appt with your husband. My niece went with me and sometimes I had to ask the Dr. to repeat so that I understood what was said. He will need you to repeat what was said to reaffirm the positive comments made by the dr. Keep the faith and things will be okay. I know what he is feeling and believe me you being there is the best medicine he can have. Love him and help him but don't baby him. Have him live his life as normal as possible. Talk about it but don't dwell on it. Depending on the kids ages will determine what you can tell them. Believe me when I say the kids know something is up. Be positive when you explain. When you know more tell them. Make it a family fight. Good luck!

caregiver1829 said:

tellme
jhale17; now it sounds like what you being treated for is in the same ballpark as what my wife has,, we find wed exactly what and how bad, but it is in behind the floating intestines and is a vry sml speck on the pet scan.. her doc too is suggesting TREANDA W/RITUXIN one day a week over 4 weeks,, from what ive read on a doc report on utube is it has had a 90% effectiveness rate in Europe.. and one of the members of this site used it when it first came out and has been in remission 2 years now,, NOw thats the numbers I want to hear,,
Hows it been so far?? No hair loss?? they say its a lot milder the the rest of the chemo's but better results.. good luck jan..

Treanda/Rituxan Side Effects on Me
Caergiver1829- Here is what my third treatment side effects were; 1st day was Rituxan - no side effects. The 2nd day was Treanda - no side effects. The 3rd day was Treanda- no side effects. The 4th day was a Neulasta injection – no side effects from the injection but started feeling very sleepy to the point of cancelling a meeting. Days 5, 6 & 7 I had signs of side effects, mainly in the mornings, of lightheadedness. This was to the point I did not drive until it cleared up.

For the next three weeks until my next chemo I felt fine as long as I did not overdo. Understand this is what I experienced. You may be different. Overall these sided effects are much milder than my previous chemo’s (CHOP, RICE and EPOCH+R.)

For me there has been some hair thinning but nothing like my previous chemo’s where every hair on my body was gone.

Best of luck to you

glacier said:

hey there new friend and friends...
this is my first time getting onto this site and i think i found exactly where i need to be. i've been reading through the postings and trying to soak up as much information as possible. yesterday i was given my diagnosis of high grade b cell lymphoma. this lymphoma was found incidentally on breast MRI roughly 6 weeks ago. it wasn't until yesterday that i was informed of the final pathology. this has come to a great shock to me as i have been asymptomatic. i'm a 32 year old female that just finished running a half marathon and ski multiple times a week. i had no clue that this was coming. i'm hoping that i can get a few pearls of wisdom from others that have gone through or are going through this. i don't know what to expect or how long to expect this journey to be. i meet with the oncologist on thursday to go over our plan of action. i'm very scared but very optimistic as well. thank you.

Hi Glacier
Hi Glacier, sorry that you have to be here but welcome to the group! My name is Liz and even though I have a different type of lymphoma than yours I think that the battle is still the same just a little different with treatments and all. My dx is Splenic Marginal Zone Lymphoma stage 4, tumor in spleen, liver and bone marrow involvement. I recently had Rituxan treatment my Oncologist didn't want to give me chemo because I do have other health issues. It always comes as a surprise a diagnosis like this, I was also very active before my dx but recently I have some pain in my back that limits me to do a lot of exercise. Hope your battle with the big C goes well and you get rid of it fast! Best wishes and let us know how your appointment went and I know that you're scared but try to remember to ask a lot of questions. I forgot to do it when I saw my Onc I was a bundle of nerves lol. Take care

Sincerely,
Liz