Diffuse Large B Cell Lymphoma

mainely

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.

encouragement!

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. )

illead

mainely said:

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.

Treanda

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

djblauw65

Diffuse Large B-cell Lymphoma/ Nonhodkins

nikkig43

I am new here and was reading your blog.  I was diagnosed January 27, 2011.  I had gone with a friend to visit her step mom and she had 2 cats, 2 dogs, 2 birds, and 2 rooster hatchlings in her house with a lot of dust and other stuff.  She is in her 80s and lives on a small farm.  I reacted allergiclly and things progressed from there to coughing, choking and having trouble breathing.  I was working as a caregiver and had no medical insurance.  Fortunately I live in the Seattle area and went to Harborview Medical Center that is tied in with the UW Medical Center and they have a great program along with what the state offers for those without insurance.

Anyway, 2 of my friends took me to Harborview ER January 26th after work and my journey began.  Dr. Sardesai just happened to be in surgery that night and after x-ray and CT Scan  which found a mass growing into my thyroid I was taken to surgery for a tracheotomy and biopsy.  I was admitted to the hospital and spent about 15 days there.  While there they did a swallow study and found I was aspirating and a nasal gastric feeding tube was inserted fortunately my ENT tested again and it was removed in about a week.  I was stage 1.  A PET Scan was also done to determine the extent and the only place that lit up was the mass.  Bone marrow was also negative.

I had 3 infusions of Rituxin 21 days apart and 4 weeks of radiation following.  For radiation they made a mask out of this mesh that hardened on my face.  My radiation sessions were very short and as long as I closed my eyes before they put the mask on and kept them closed I had no problem getting through each session.  One session I had to get them to let me up because I began to choke and I got that under control and we resumed and had no further problems.

I had no nausea during chemo and only once during radiation.  Started on one of the anti-nausea meds they had given me and finally weaned myself off.  I know it was a God thing that it was localized in the mass and the entire team of people involved in my treatment were amazing.  I know God gave each one to me because they are people that listen and truly care about the people entrusted to their care.

I am in remission and at my last visit with my medical oncologist she told me they are no longer doing the scans because they are not really finding relapse with them.  It is usually the doctor or the patient that finds a lump or other symptoms that arise.  So I have had my last scan and am glad about that.

Just wanted to let you know there is another person out there that has gone through this and knows what it is like.  I will be praying for both of you.

Also wanted to tell you about another free website that is a great way to keep family and friends updated on how things are going.  Do not know if you know about CaringBridge but I used it for my son when he had to be put on the heart transplant list in 2010 and again when as I am walking through this process.

Just know this was no surprise to God and He is all over it and will see you through.  I could not have done it without the prayers of people around the world that cared enouogh to lift my name heavenward.

Sorry this is so long just wanted to let you know God is good and I care too.  By the way I was going on 62 when I was diagnosed and I now take much better care of myself.  I start my day with a fruit smoothie and try to eat as much fresh fruit and veggies and organic and nonprocesed foods as possible and stay away from sugar (this is not easy).

Once again take care.

Donna Blauw

Max Former Hodgkins Stage 3

djblauw65 said:

Diffuse Large B-cell Lymphoma/ Nonhodkins

nikkig43

I am new here and was reading your blog.  I was diagnosed January 27, 2011.  I had gone with a friend to visit her step mom and she had 2 cats, 2 dogs, 2 birds, and 2 rooster hatchlings in her house with a lot of dust and other stuff.  She is in her 80s and lives on a small farm.  I reacted allergiclly and things progressed from there to coughing, choking and having trouble breathing.  I was working as a caregiver and had no medical insurance.  Fortunately I live in the Seattle area and went to Harborview Medical Center that is tied in with the UW Medical Center and they have a great program along with what the state offers for those without insurance.

Anyway, 2 of my friends took me to Harborview ER January 26th after work and my journey began.  Dr. Sardesai just happened to be in surgery that night and after x-ray and CT Scan  which found a mass growing into my thyroid I was taken to surgery for a tracheotomy and biopsy.  I was admitted to the hospital and spent about 15 days there.  While there they did a swallow study and found I was aspirating and a nasal gastric feeding tube was inserted fortunately my ENT tested again and it was removed in about a week.  I was stage 1.  A PET Scan was also done to determine the extent and the only place that lit up was the mass.  Bone marrow was also negative.

I had 3 infusions of Rituxin 21 days apart and 4 weeks of radiation following.  For radiation they made a mask out of this mesh that hardened on my face.  My radiation sessions were very short and as long as I closed my eyes before they put the mask on and kept them closed I had no problem getting through each session.  One session I had to get them to let me up because I began to choke and I got that under control and we resumed and had no further problems.

I had no nausea during chemo and only once during radiation.  Started on one of the anti-nausea meds they had given me and finally weaned myself off.  I know it was a God thing that it was localized in the mass and the entire team of people involved in my treatment were amazing.  I know God gave each one to me because they are people that listen and truly care about the people entrusted to their care.

I am in remission and at my last visit with my medical oncologist she told me they are no longer doing the scans because they are not really finding relapse with them.  It is usually the doctor or the patient that finds a lump or other symptoms that arise.  So I have had my last scan and am glad about that.

Just wanted to let you know there is another person out there that has gone through this and knows what it is like.  I will be praying for both of you.

Also wanted to tell you about another free website that is a great way to keep family and friends updated on how things are going.  Do not know if you know about CaringBridge but I used it for my son when he had to be put on the heart transplant list in 2010 and again when as I am walking through this process.

Just know this was no surprise to God and He is all over it and will see you through.  I could not have done it without the prayers of people around the world that cared enouogh to lift my name heavenward.

Sorry this is so long just wanted to let you know God is good and I care too.  By the way I was going on 62 when I was diagnosed and I now take much better care of myself.  I start my day with a fruit smoothie and try to eat as much fresh fruit and veggies and organic and nonprocesed foods as possible and stay away from sugar (this is not easy).

Once again take care.

Donna Blauw

Welcome !

Donna,

Welcome aboard the Boards here. You story is quite interesting, and I admire your attitude and faith.

Logistically, in the hope of being helpful, I want to mention that you are responding to a two year old post. Nothing wrong with that, of course, but you may find that many of the folks involved then have (or have not) moved on, and you may not get a response to something that old for some time. (The date that a post is made is  always in the top-right corner.)

 

You say you were diagnosed when 62 ?  I am not trying to be flattering, but you look like you are in your 30s in the photo attached.  Keep on that health regimin !  It is working !

max

ledeen

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.

Stem Cell Transplant question

Hi Dennis,

I wanted to ask your experience with the Stem Cell Transplant. I have Stage 4 Diffuse B Cell Lymphoma - Non Germinal Center Like. I just competed 6 rounds of EPHOCH and Rituximab.

My Petscan after my 4rth round of chemo was very promising, since all but 2 locations showed no activity on the Petscan (I had about 12 tumors in both Lymph Node and Bone) The radioligist thought the last two spots were treatment related and I did my last two chemo rounds and just had another Petscan.

This one showed the two spots of activity still there so obviously not treatment related, also one location where there was no activity on the last scan had spots of activity and a NEW lymph node showing activity.

Dr wants to attempt to Biopsy the new lymph node, and then discussed doing more chemo (different drugs this time) and hopefully if it works then Stem Cell Transplant. Now when I was tested originally I did not have Lymphoma in the Bone Marrow, but they did not harvest any cells, so not sure if that will be an option. But if it is, I wanted to get an idea on how tough it was.

My hospital does it outpatient , and you have to move to a temporary apt that is within 15 minutes of the Hospital and have 24 hour assistance. But how long would I expect to be really sick? I work remote for my job and because I am contracting I am really concerned if I have to take months off they will fill my position. So far Ive been able to take a couple days here and there but work remote the remainder of the time (4 months for the 6 rounds of chemo).

I am very depressed that the Ephoch treatment did not work. It was 4 days in the hospital then 2 weeks out. Worried this next type of Chemo wont work either, and leave me with no choices.

thx!

Ledeen

 

 

jbutler76

ledeen said:

Stem Cell Transplant question

Hi Dennis,

I wanted to ask your experience with the Stem Cell Transplant. I have Stage 4 Diffuse B Cell Lymphoma - Non Germinal Center Like. I just competed 6 rounds of EPHOCH and Rituximab.

My Petscan after my 4rth round of chemo was very promising, since all but 2 locations showed no activity on the Petscan (I had about 12 tumors in both Lymph Node and Bone) The radioligist thought the last two spots were treatment related and I did my last two chemo rounds and just had another Petscan.

This one showed the two spots of activity still there so obviously not treatment related, also one location where there was no activity on the last scan had spots of activity and a NEW lymph node showing activity.

Dr wants to attempt to Biopsy the new lymph node, and then discussed doing more chemo (different drugs this time) and hopefully if it works then Stem Cell Transplant. Now when I was tested originally I did not have Lymphoma in the Bone Marrow, but they did not harvest any cells, so not sure if that will be an option. But if it is, I wanted to get an idea on how tough it was.

My hospital does it outpatient , and you have to move to a temporary apt that is within 15 minutes of the Hospital and have 24 hour assistance. But how long would I expect to be really sick? I work remote for my job and because I am contracting I am really concerned if I have to take months off they will fill my position. So far Ive been able to take a couple days here and there but work remote the remainder of the time (4 months for the 6 rounds of chemo).

I am very depressed that the Ephoch treatment did not work. It was 4 days in the hospital then 2 weeks out. Worried this next type of Chemo wont work either, and leave me with no choices.

thx!

Ledeen

 

 

ledeen...

Hi ledeen, I hope all is well with you. My mom is 58 and battling the same subtype (DLBCL non-GCB). She completed two R-Chop with little success, then her Dr switched her to R-EPOCH. She has had only one R-EPOCH. I've read a lot about this subtype, and that it is more difficult to treat. Her Dr also mentioned a drug called bortezomib + R-EPOCH, but it is still in trials and not FDA approved. She will have to travel to get it... we will take her wherever she needs to go. I'd like to know if you recieved a SCT and how things are going. I haven't found much on the forums about the non-GCB(ABC type). 

bwhanson

Almost 2 years of blog for R-EPOCH and stem cell transplant

Just got word I may be in remission from my Large B cell lymphoma.

In the beginning I decided to blog the experience, I figured if I had to go through it, maybe it would help others to avoid pitfalls and be more prepared for things as they come.  It can be found at "www.bryantstblog.wordpress.com". I also used the blog to help family and friends know what was going on, so they didn't have to call to find out. If you find the blog useful, you have my permission to share it or put it were it might do the most good.

Bryant

Pktwinprincess

Hi

I'm recently in remission as of Dec 2016 for stage 4 DLBCL....aka Larry as a dear friend of mine called it. I'm just learning to take things slow and be patient. My L2 vertebrae is crushed as a result of a tumor near my spine so the next step is likely surgery. I'm a teacher and have been out of work since my diagnosis in July. I'm hoping to get back soon, I really miss my kiddos. Blessing to all! 

Erin

IsmaPR

New Here Seeking Guidance from hurricane ridden PR to Wa or Tx

Hi everyone. I have Diffused Large B Cell Non Hodgkins Lymphoma. I recieved my 1st session of RCHOP, had shingles at the time and the RCHOP turned it into a really bad case of shingles. Got better and was supposed to start my second session of RCHOP, but Hurricane Maria hit Puerto Rico, where I am currently at. I'm trying to figure out if thee are any hospitals experienced with this type of cancer in Washington State, where I use to live, because I at least have my sister there. I know that MD Anderson in Houston Texas has experience with this cancer and treatment, but the family I have there live 4 hrs away. Please, someone with experience being treated in either, please write me and let give me some guidance. I'm also going to need help financially, so any guidance on how to go on about these things is greatly appreciated!

PBL

IsmaPR said:

New Here Seeking Guidance from hurricane ridden PR to Wa or Tx

Hi everyone. I have Diffused Large B Cell Non Hodgkins Lymphoma. I recieved my 1st session of RCHOP, had shingles at the time and the RCHOP turned it into a really bad case of shingles. Got better and was supposed to start my second session of RCHOP, but Hurricane Maria hit Puerto Rico, where I am currently at. I'm trying to figure out if thee are any hospitals experienced with this type of cancer in Washington State, where I use to live, because I at least have my sister there. I know that MD Anderson in Houston Texas has experience with this cancer and treatment, but the family I have there live 4 hrs away. Please, someone with experience being treated in either, please write me and let give me some guidance. I'm also going to need help financially, so any guidance on how to go on about these things is greatly appreciated!

Fred Hutch Seattle

Hello IsmaPR,

Sorry to welcome you to the forum but glad you have found this good place for support.

The National Cancer Institute website indicates Fred Hutchinson in Seattle as a designated comprehensive cancer treatment facility.

I am afraid I can't advise on financial issues, but I am sure others - and among them, Po18guy - will be along shortly with suggestions in that respect. Perhaps one way would be to contact the hospital (social worker...) directly?

I hope you find answers soon.

PBL

Evarista

IsmaPR said:

New Here Seeking Guidance from hurricane ridden PR to Wa or Tx

Hi everyone. I have Diffused Large B Cell Non Hodgkins Lymphoma. I recieved my 1st session of RCHOP, had shingles at the time and the RCHOP turned it into a really bad case of shingles. Got better and was supposed to start my second session of RCHOP, but Hurricane Maria hit Puerto Rico, where I am currently at. I'm trying to figure out if thee are any hospitals experienced with this type of cancer in Washington State, where I use to live, because I at least have my sister there. I know that MD Anderson in Houston Texas has experience with this cancer and treatment, but the family I have there live 4 hrs away. Please, someone with experience being treated in either, please write me and let give me some guidance. I'm also going to need help financially, so any guidance on how to go on about these things is greatly appreciated!

Seattle

One of our recent posters has been treated in Seattle.  Here is contact info for the Seattle Cancer Care Alliance, founded by Fred Hutchinson Cancer Research Center and U. of Washington: https://www.seattlecca.org   Phone: 800-804-8824 or 206-288-7222  FAX: 206-288-1025  EMAIL: contactus@seattlecca.org

Good luck

 

yesyes2

Possible financial help.

Hi IsmaPR,

Sorry you are going through so much right now, but am happy you found this site.  I agree, Fred Hutchinson has a wonderful reputation in the treatments of blood cancers.

I would suggest you contact the Luekemia and Lymphoma Association to see what financial help may be available.  

Best of wishes, please let us know how you are doing.

Leslie

lindary

IsmaPR said:

New Here Seeking Guidance from hurricane ridden PR to Wa or Tx

Hi everyone. I have Diffused Large B Cell Non Hodgkins Lymphoma. I recieved my 1st session of RCHOP, had shingles at the time and the RCHOP turned it into a really bad case of shingles. Got better and was supposed to start my second session of RCHOP, but Hurricane Maria hit Puerto Rico, where I am currently at. I'm trying to figure out if thee are any hospitals experienced with this type of cancer in Washington State, where I use to live, because I at least have my sister there. I know that MD Anderson in Houston Texas has experience with this cancer and treatment, but the family I have there live 4 hrs away. Please, someone with experience being treated in either, please write me and let give me some guidance. I'm also going to need help financially, so any guidance on how to go on about these things is greatly appreciated!

PR

I work for a company that has locations in PR. I wish you the best. Long before I had cancer a co-worker who was fighting cancer used to say that when picking a hospital nosider how long you want to sit in a car if you are sick and puking.  Of course we all know there is more to it than that but it does make  a point. The best hospital in the world won't help if it takes too long to get there when you need to.