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Diffuse Large B Cell Lymphoma

nikkig43
Posts: 73
Joined: Feb 2012

My husband has been recently diagnosed. Stage II A. He has had one R-CHOP infusion so far.
I'm very curious about other people's experience with the same diagnosis. How are you? Any advice?

nikkig43
Posts: 73
Joined: Feb 2012

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.

LarrySurvivor6
Posts: 5
Joined: Dec 2009

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

nikkig43
Posts: 73
Joined: Feb 2012

I appreciate your input. I admire your strength and positive attitude.
My husband is feeling really good. He is currently getting his 2nd R-CHOP infusion. So far, so good.
Take care Larry. I hope you are feeling good too.
Nikki

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

mainely
Posts: 2
Joined: May 2013

I am new here and this is my first post. not new to nhl, after 2 years in remission it came back and am starting chemo next thursday. I had R/chop last chemo for 6 months and 2 yrs. follow up rituxin. I am having treanda w/rituxin and hoping for good results with less difficulty than the r/chop. my doc tells me treanda is having very successful results.

good luck with your #7! I didn't have a lot of problems with r/chop but was so exhausted I could hardly walk thru my house.

illead's picture
illead
Posts: 566
Joined: Aug 2012

hi Mainly,

     My husband Bill has Mantle Cell Lymphoma.  He was near death when diagnosed in July '11.  He had Treanda/rituxan and was in complete remission by Feb '12 and remains in remission.  We are very thankful for Treanda and think you will be too.  Bill had no side effects other than a little tired and he did not lose his hair.  I think you have every reason to be hopeful with your oncoming treatment.  Welcome to this site BTW.  I think you will find it very supportive and comforting.  There are some very nice people here and knowledgeable.  I do have a suggestion.  This praticular subject string is a little outdated and long and hard to maneuver through.  Why don't you start a new subject and I think others will see it easier.  Just a thought.  Our very best to you and please let us know how it is going.  Bill & Becky

DennisR
Posts: 148
Joined: Sep 2009

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.

nikkig43
Posts: 73
Joined: Feb 2012

Wow, I'm so sorry that you had a reoccurance after 8 years! What a nightmare !
I'm glad that you are feeling well again.
Thank you so much for heads up on the chemo side effects. Good to know. I will let my husband know. Luckily, he is only scheduled for 3 R-CHOP infusions then some radiationn.
We are looking forward to getting all of this behind us.
Take care, Nikki.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Dennis,

I am so glad things turned out well for you. I know it must of come as a shock to be
re-diagnosed after 8 years of remission. The good news, how well you are doing now. Yes, I
know it comes at a price.

I also had resection surgery in Sept 2009. My small bowel perforated caused by NHL.
If you don't mind me asking, where did you have the resection?

Hopefully and praying for you another 8 years and beyond total remission.

God Bless Maggie

DadysGirl
Posts: 322
Joined: Aug 2011

Dennis, I really need to talk to someone who was in their 60s when they had stem cell transplant, would you please write back to me?
Thank you.
Regards.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

ask drs about TREANDA W/RITUXIN it has been showing good results with nhl,
my wife has a relapse and we re waiting for biopsy to see what kind and how much and all that stuff, and we talking about using this line of chemo,, has abut 90% effectiveness in the old country.. n one of the girls on this site has been cancer free for two years now.. and i think hers started in the neck area too.. food for thought,, check out caringbridge.org for a way to comunicating to all that are concerned about his status.. more food for thought.. jan..

Folks24
Posts: 104
Joined: Feb 2007

Not sure how how often your husband has treatments. Mine are every three weeks. I was told by my GP that the first 3 weeks are the worse. I had muscle aches especially in chest and back, constipation, diarehha, heavy arms and legs, and fatigue. This I was told was normal by the oncologist. When I got the diarehha problem, I got dehydrated (didn't realize it) so I would recommend to be sure and drink plenty of fluids.

On my 2nd chemo treatment the symptoms were much milder. Though I did have the heavy legs and arms, no muscle aches and constipation that I got ahead of that only lasted a couple days and was milder than the last time. I just finished my 3rd treatment.

I too was very worried on my first treatment. I envisioned a "garden hose" needle. They just used a regular needle and I didn't have problems with the chemo. Just follow what the onocologist tells you and call with ANY problems. My group has someone on call 24 hrs so that helps. Hope you do too. Good Luck.

Tcan
Posts: 2
Joined: Feb 2013

I was diagnosed with Non-Hodgkin’s lymphoma when I was 60, my doctor recommended to start radiation and chemo which I did and the result of the testing afterward indicated that it was working but still tumor masses were present, so I started to look for an alternative approach and found a vegetarian diet which I still follow.

I also found that using 3 elements OKC (Ozone, Vitamin K3 and Vitamin C) in high doses has given me better odds in beating this disease, I would recommend that you seek an alternative approach either to compliment your current treatment or as a standalone treatment program.

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

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. :)
Members are sharing recipes!:
♥ Recipe Sharing Project

nikkig43
Posts: 73
Joined: Feb 2012

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.

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Sue made some good points in her post regarding caregiving.
I think communication is very important but don't be surprised if
your husband doesn't open up in the beginning about some things.

You have to make time for yourself and take care of yourself too.
From my experience and personality, I wanted to do as much for myself
as I could but it may be different in your situation so understand
I'm relating based on "me" :). I'd say listen and observe and let
your husband be your guide.

Some good generic advice is to take everything one day at a time.
Try not to worry too much about the future right now and be grateful
for what you do have. One thing I think most of us here will agree
upon, cancer is a beast but you learn what's valuable in your life
and it's often the smallest and simplest of things. This will change
you and your family's lives forever but it won't be all negative.
You will learn and discover you have strength you didn't know you had.

You may want to check out the "caregivers" board as well as there will
be lots of ideas and advice there too. Your husband is welcome to join
us here on the lymphoma board. There's a great bunch of folks here and
he won't feel so alone in dealing with this. Keep us posted and
"happy dances" await for each victory along the way.

Congratulations on your upcoming 25th!

Big hairy hugs (yep, it grew back;)),

Jim

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi nikkig43,
I just wanted to say hi and welcome to the group! I have a different type than your husband, mine is Splenic Marginal Zone Lymphoma. I just started Rituxan treatment two weeks ago so I'm fairly new to the whole thing myself. Going through the motions as well! Take care and wish you and your hubby only the best in his treatment.

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi nikkig43,
Do you live in Washington State? I live in Yakima Washington is why I asked. I do not have the same sub type of Lymphoma that your husband has, and my chemo cocktail was milder than the R-CHOP. With that being said, regardless of our different chemo's we still all have similar after affects. Fatigue, achey joints and spells of mood swings seem to come with the territory no matter the sub type. I have finished my first line chemo..CVP-R and now in my 2 year maint of Rituxan. As a rule, I feel pretty good other than my energy level still isn't where I'd like it to be. I also experience hip pain where my Bone Marrow Biopsy was done, but not severe enough to require pain meds...more of an achey numbness in my upper left butt cheek area. If I do things at a fast pace or over exert, I tend to get short of breath and my heart rate goes up. I'm slowly learning to take things down a notch and when I do, it seems to keep things in check. My advice as being the care giver is to just have patience and keep the household as normal as possible. My hubby fretted wayyy to much in the beginning, but has now worked out his own way of dealing with our situation. We talk more and take each day as it comes. Please stick with the group... the help you will receieve is amazing! Take care and best wishes to your hubby. Love...Sue
(Follicular NHL-stage3-grade2-typeA(slow growth indolent) diagnosed June 2010 age 61

nikkig43
Posts: 73
Joined: Feb 2012

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.

Shannie76's picture
Shannie76
Posts: 8
Joined: Feb 2012

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

nikkig43
Posts: 73
Joined: Feb 2012

My husband and I are only a few weeks further down the road then you are. The first few weeks were the hardest for me, during all of the testing and appointments. It gets easier once you know what Stage he is in. You know what you're up against.
You sound just like me and my husband sounds just like yours :). He really didn't seem too upset or even worried so I made up for it, unfortunately.
Here's what I know about Diffuse Large B Cell Lymphoma. Our oncologist said that if he is Stage 1or 2, he has a 85 -90% chance of complete cure ( no reoccurance). If he is Stage 3 or 4, it's still very curable ( around 60% ). He said that if you have to get cancer, this is the one to get.
My husband had a swollen tonsil for months and finally went to the doctor when he was having trouble swallowing food. After all the testing, it turns out he is in Stage 2. His tonsil is affected and a couple of surrounding lymph nodes, but it hasn't spread beyond his neck.
He handled his first chemo infusion pretty well. No nausea or vomiting, but he felt tired and restless at the same time. He couldn't sleep very well. And the good news is that the doctor feels like he is already in remission after one treatment! His tonsil is completely back to normal. He will continue with the rest of the treatments ( 2 more chemo infusions and radiation) to decrease the chance of it coming back.
Please contact me if you want chat or vent or whatever, nikkiguthmiller@gmail.com.
Take care,
Nikki

Sweetumscat
Posts: 2
Joined: Mar 2012

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!

nikkig43
Posts: 73
Joined: Feb 2012

Thank you so much for sharing your story and your good advice. So you had 6 R CHOP infusions, total? Did you also have radiation?
My husband has done pretty well so far. The prednisone makes him feel bad for the 5 days he is on it. Right now, after the 2nd treatment, the vein in his IV arm is very inflamed, and painful from his wrist to his armpit. The doctor said its a reaction to one of the chemo meds. He is unable to straighten his arm all the way. It should be ok eventually. It may take a few more weeks. His blood counts between treatments have been great. The doctor said that after his first treatment, that he was probably already in remission. His tonsil looked completely normal already. His last ( hopefully) Chemo is on Monday. Our life is pretty normal. Both of our daughters are college age and have been very supportive. I have been going to every doctor appointment with him. He told me that he really appreciates me being there.
Next, he will have radiation 5 times a week for 3 weeks. I'm anxious to hear about other people's radiation experience. Will it affect his swallowing/eating? Is it painful?
I tend to worry a lot. I have always been a worrier. I'm having trouble sleeping because I think about everything all the time. My husband has always been a very calm person. He doesn't worry. He says it doesn't help anything to worry about things. He's right, I know. I'm praying all the time and trying to give my worry to God. I'll just be so glad when it's all over.
Thanks again for all of your good advice. It helps me tremendously to hear other people's experiences and positive thoughts.
Take care of yourself and I pray that you continue to stay healthy. God Bless you.
Nikki

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

NIKING43 said - “Next, he will have radiation 5 times a week for 3 weeks. I'm anxious to hear about other people's radiation experience. Will it affect his swallowing/eating? Is it painful?”

My wife had 45 external radiation treatments in 1991 and I had 25 radiation treatments in 2000 on my next/throat. There is a preparation appointment or two where they tattooed a few dots on our bodies to get you aligned in the machine the same way for each radiation session. To hold my head still they may a mask of my face out of fabric and some kind of gel that hardened while on my face. This they put on me each session. It had a loose weave that I could see though. It sounds worse than it is.

The time in the mask is brief, in my case I had 30 seconds on the left side of my neck and 30 seconds on the right side of my neck and 60 seconds on the front of my neck. They also have shields they put in place around you so the radiation does not go where it is not wanted. There is more time getting setup than there is with the machine on.

I felt nothing during treatment only a little sound out of the machine during radiation and then the sound of the machine rotating to the three different positions. As the treatments go by my skin of my neck became “sunburned.” They will tell you how to treat this. Eleven years ago I used pure aloe oil. The most noticeable side effect of the radiation me was a feeling of tiredness that continued after the treatments. The swallowing issue may show up some what then eventually ease off.

Both my wife and I drove ourselves to and from our treatments. I was working at the time so on Fridays I would pick my wife up at the hospital after her breast cancer radiation treatment and take to lunch on Newport Bay as a treat.

If you can find a cancer support group in your area I recommend you both attend. I have been going to one for eight years and have gained a lot of helpful information. The doctors at our hospital would make lunch for the breast cancer patients as a treat and information sharing once a month. I was on my own - Ha.

Next week I take my fourth of six treatments of Rituxan/Treanda and all things are good so far. Good luck to you both and it sounds like you can start sleeping better now Nikki.

nikkig43
Posts: 73
Joined: Feb 2012

I really appreciate your insight about radiation treatments. We are stepping into this new phase of treatment and I know he is very nervous about it. He had the option of radiation or 3 more R-CHOP infusions and he chose radiation because the chemo was pretty hard on him. We are hoping he will tolerate the radiation a little better. I will definitely share your experience with him. I'm sure it will ease his fear a bit. Thanks again.
I hope you and your wife are well. Take care. Nikki

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

guys you re right,, im a caregiver and yes it sounds like most of the side effects are about the same,, but I want to inject one more fact for all of us.. ONCE YOU HAVE CANCER IT WILL EFFECT YOU FOREVER,, LIFE WILL NEVER BE THE SAME.. and I see where this site is very supportive and helpful,, and beings that i ve been involved since 2008 I too have seen a lot of the problems you all talk about.. the best of luck to all.. Jan..

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

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.

nikkig43
Posts: 73
Joined: Feb 2012

This is awful. I'm so sorry that you have had to go through all of this.
I'm trying to figure out why some people are cured permanently after one cycle of treatments and others experience a reoccurance? Could it be the initial type of treatment? We will be talking to my husbands doctor in a few weeks about whether he should do radiation after the 3 RCHOP infusions or add 3-4 more RCHOP treatments instead. I thought he said once that radiation will decrease the chance of reoccurance. My husband is a little afraid of radiation, and leaning more towards extending the RCHOP treatments instead. We'll see what the doctor says.
I wish you the best. I pray for a permanent cure for you. Take care,
Nikki

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

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's picture
jhale17
Posts: 9
Joined: Jan 2012

I received CHOP in 40 not 20 minutes.

Shannie76's picture
Shannie76
Posts: 8
Joined: Feb 2012

Thank you. I am sorry to hear about your wife, and to hear of everything you have and are going through. My husband lost his mom to pancreatic cancer It wasand still is very hard for him.
My husband is just now after 2 weeks of being diagnosed he is finally starting to come to terms with being diagnosed with NHL. For awhile there it was always referred to as the C word and it was complete denial.

We are just starting on our journey & we have such a busy week of testing now ahead of us. This Monday he now has a CT scan, & an injection of dye for his Gallium scan and then he has a Chemo information class. On Wed he has an Echo test for his heart & then Thursday back to have the Dye read in his body.

Then on the 19th back to the Oncologist & if everything is good on the 20th he starts his Chemo. It was alot to take in & we have now found a 3rd lump this time on the left side of his neck. He is always tired, he has lost 25lbs and zero energy sometimes & now he is starting to have some stomach pains that come and go.

Thank You

miss maggie
Posts: 929
Joined: Mar 2010

I am sorry to hear your wife passed away from Pancreatic Cancer. MY husband passed
away from this cancer in May 2004. He passed away exactly 2 years from DX. He was treated
with Gemcitabine (Gemzar) for almost a year. I do believe this chemo kept him pain free
to the end. He did have a big problem eating.

Ask your doctor if you can take vitamins. You must eat. Eat many times a day if you have
to. Drink Insure or any vitamin drinks.

I am truly sorry for all you have gone through. When I was DX, I went into such a depression.
The more I read and learned from doctor's, our DX is treatable in most cases.

Keep us posted on what's going on with you. Maggie

nikkig43
Posts: 73
Joined: Feb 2012

Just wanted to pass on what my husband's oncologist recommended. We asked him if my husband should be taking vitamins to boost his immune system or anything else that might help fight the cancer. He said absolutely not! Certain things like Selenium and Vitamin E can actually decrease the effects of the chemo and lower your chance for a cure. I was so glad I asked, because I was just going to go to the supplement store and buy what the clerk recommended.
I was really surprised, so I thought I should pass it on.
Nikki

miss maggie
Posts: 929
Joined: Mar 2010

Dear Nikki,

Thank you so much for the information you forwarded. Very interesting.

I only received Rituxan treatment once weekly for 4 weeka. I am now in remission??
For now anyway. I don't take large amounts of supplements. Just what my body should
have. Multi vitamins with minerals, Vitamin D3, fish oil and vitamin C. So far all
my blood tests are excellent, normal.

Since I am not a doctor, what you doctor suggested should be taken seriously. Maybe
you can ask the doctor after your husband finishes treatment, if he can then start
a vitamin regiment. I understand chemo is still in the body months after treatment,
perhaps then?? Don't go overboard, please.

In the event things should change for me, and I need chemo treatment, I will certainly
ask my oncologist about vitamin E, and Selenium.

Prayers for your husband. Love Maggie

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

Nikki; ask dr about treanda and rituxin too.. jan..

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

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

DadysGirl
Posts: 322
Joined: Aug 2011

Hi , would you please write back to me...

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

Hi, DadyGirl

You post of April 3, 2012 was listed right below my last post. I am not your your request to write to you was for me. However, here I am writing to you. What is your situation? JH

regans
Posts: 2
Joined: Jun 2012

Hi.JHALE17 I am facinated with your story because of all the things you have tried. My husband had chop in 2011 with a complete remission but for only 4 months.This past feb he had 3 rice treatments with a complete remission but they said he has to have stem cell transplant which he hates doing for MANY reasons.Were you not a candidate for SCT or did you just refuse to do one? He can't do Zevelin because he is CD20 Neg.

mainely
Posts: 2
Joined: May 2013

I am so encouraged to read your post, Jhale! I am getting ready to start  Treanda/rituxin chemo for my second occurrence next week and your post makes me very hopeful. I have to admit when I was told it was back after 2 years in remission I was overwhelmed and feeling little hope. Chemo is one of the hardest things I have ever done ( divorce after 38 yrs., loosing home due to divorce, drug abuse by dh, on and on).  As you can see there has been a lot and then came cancer! Thankful for everyone here and think this forum will be a great source of support for me and hope I can support others with my experience.

You have made my day so very positive! Thank you for sharing your story. :o)

mnovs3
Posts: 4
Joined: Mar 2012

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.

nikkig43
Posts: 73
Joined: Feb 2012

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.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

nikkig43
Posts: 73
Joined: Feb 2012

I appreciate all the information I can get.
Good luck to you and your wife too!
Nikki

glacier
Posts: 7
Joined: Mar 2012

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.

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

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

nikkig43
Posts: 73
Joined: Feb 2012

My husband was diagnosed in January ( diffuse Large B Cell Lymphoma). He has now finished his 3 rounds of Chemo ( R-CHOP). Now, in a couple of weeks, he will start radiation.
I think the hardest part so far was the time it takes for all the staging tets. When the results were in and we knew what we were dealing with, it seemed easier to us. He handled the chemo pretty well. He has continued working throughout, except for a couple of days.
Just a word of encouragement, his oncologist told him that it is very curable. One of the best cancers to get, if you have to get it.
Try to keep your everyday life as normal as possible. Try to think positively.
Feel free to email me if you think I can help. ( nikkiguthmiller@gmail.com)
Take care, nikki

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Thanks for your words of encouragement. i had the same diagnosis in Jan 2009. I responded well to chemo. Never had radiation. I had stage 3. God bless his journey and you.

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