Diffuse Large B Cell Lymphoma

I was diagnosed 3 months ago
I was diagnosed 3 months ago after months of pain and 4 MRIs, 3 X-RAYs, a sonogram and numerous doctors appointments. I could not get the Doctors to believe that there was something wrong with my leg. It got so bad that I could no longer drive to work. I have Systemic Lupus, I've had a heart attack and triple bypass and valve replacement. Plus a couple of other problems that I wont go into here. Finally, my reumatologist saw a mass in my hip. I had a biopsy done at Johns Hopkins, and was diagnosed with Diffuse Large B-Cell Lymphoma. Dont know what stage, but the tumor has been happily growing in my hip and was starting to infuse the bone, since last june. I will have my third chemo treatment on tuesday, May 22. The chemo has not been too bad at all really. I have not gotten sick to my stomach, I have lost my hair, which came out in clumps, so when it started landing in my dinner plate. I went to the Harry and Jeanette Wienberg Cancer center and had them shave my head. The worst part about the whole thing is a Neulasta shot the day after the chemo has really kicked my butt. Since the chemo kills your white blood cells, the Neulasta is supposed to help re-build the cells. Gives me back spasms and makes me feel tired, achy, and hot and cold flashes. Hope this helps.

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.

your remission from rice treatment
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.

Max Former Hodgkins Stage 3 said:

Neulasta

Neulasta caused me severe back pain after my first shot, mostly because I had broken my back in an auto accident, and had two collapsed disks adjacent to the compression fracture. I had to go to a half-dose, but the half-dose kept my WBC count well up. You may want to ask your doc about a half-dose, if the pain persists. It worked well for me.

Max

.

neulasta...
hey there max and sbrown. just wanted to pass on what my oncologist and the chemo pharmacist told me for alleviating the pain from neulasta. they suggested taking claritin. you can get it over the counter and it's reasonably priced. ask your oncologist and the pharmacists that are mixing your chemo next time what they think of this and if they know about it. i took it they way they suggested for my first shot and had absolutely no pain. the second time i missed two doses and have had the low back pain and the temperature regulation issues. i won't be forgetting to take it next treatment for sure. it's just a suggestion and it worked for me. i hope it can help you as well.

nikkig43 said:

Forgot to mention that his
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.

B-Cell Lymphoma
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.

Diffuse Large B Cell Lymphoma

Hello all. I am new to the site. I was diagnosed in September 2011 with NHL Diffuse Large B Cell Lymphoma Stage III-A.  Being young (49) and in good health, the survival rate was good. After 6 RCHOP treatments, and 24 rounds of radiation, I am considered in remission. Most of what I experienced has been discussed here. I received Neulasta shots, and yes, it caused some intense bone pain about aa week after, but that got better with each treatment.  Everyone is a little different, but all should know they are not alone. I have a much greater appreciation for those fundraisers and things now.  We all benefit from their research and from those that have battled this before us.

The most important thing that helped me was to know that whatever the outcome, God is going to take care of me. He gave me such a peace about it all, and he stil does. 

Secondly, if you have radiation near the esophagus, I highly recommend my doctor's remedy for throat pain from swallowing. Drink olive oil immediately prior to your treatment. He recommended a certain brand of olive oil, Lucini.  Supposedly, the olives are higher in whatever it is that helps. I was told to drink two tablespoons three times a day, but I chose my own dose.  I took two tablespoons with me in a small plastic container and drank it in the radiation room within one minute of the process. I had no issues at all with swallowing for the duration of the treatments.

 

 

 

 

jhale17 said:

Bone Pain Side Effect From Neulasta
Over the years I have had 14 Neulasta shots. Most of them had mild side effects. However, the last one gave me extreme pain at the base of my spine the day after the injection. I had to take a strong pain med to get to sleep.

I mentioned this the next time I met with my doctor. His advice was to take Claritin the day before, the day of and the day after the Neulasta injection.

That last chemo was the finish of my six Treanda treatments and I am now in remission. Let’s hope my next reoccurrence of cancer comes after I die of something else.

Bone Pain

jhale,

I was 53 when on chemo (4 years ago). My first neulasta shot put me into severe back pain, but I had been crushed in an auto accident 25 years earlier, and had a broken back full of arthritis(compression fracture at T-9, with two collapes disks).  My doctor cut the dose in half for me, and everything went fine from that point on. I did not have pain  with the shot thereafter (I received 11 more over the next six months).  Also, the half-dose controlled my WBC counts.   I had to take Loritab for muscle pain (several of the drugs in r-abvd cause muscle pain and flu-like symptoms). It was just that bad.  Over the counter just would not do it for me.  I walked away from the drug with no problems at all after treatment ended, but I have never had an addictive personality or physiology.  Wishing you well (C.R. four years out),

max

veedub said:

R-CHOP

i was diagnosed with diffuse large  B cell lymphoma, stage 3, last july. i had six cycles of R-CHOP (plus Neulasta after each treatment as i was getting a bit short in the WBC department)  and after the last treatment in november my PET scan showed me clear of cancer except for one small spot which they are keeping an eye on. i have an appt. with the onc next month and another PET scan in june. i feel sooooooo much better. during the last four cycles i had amazingly awful fatigue and major mood swings, but i never became nauseous. i have been using tinctures and edibles of medical cannabis to prevent nausea and to help me sleep at night, which worked wonderfully.  so although the post-treatment experience was gruelling, once the effects of the last cycle wore off i have been feeling good, taking a lot of exercise, and happy to be here.

i know that DLBL tends to re-occur (in fact i have met several people who have had multiple reocurrences), but i'm not going to worry about it until/unless it happens. because the thing about worrying is that you have to go through the bad experience twice, once when you're worrying and once when it actually happens. in a completely unforeseen way, i feel very very lucky to have had the experience, because i have learned a whole lot about myself. and if it happens again i will have the option, depending on my age and physical condition, of going through treatment again or just letting it take its course. i'm coming up on 75 this year, and still happy to be alive. if it happens again in 20 years, that might be the time to just hit the pain-killers and say "forget it" to anything more invasive. i've never been fond of the idea of living no matter what shape i'm in. it all depends on whether i feel i still have things to do or not. and right now i have immense amounts of things to do.

everyone's experience is different, even with a similar diagnosis. i do recommend medical cannabis if you are in a state where it's legal. and it's really helpful to get together whenever you can with other cancer survivors, because we are the strongest people in the world, no lie.

bb

v

Lively !

Vee,

You are looking great in your new photo, and I am glad that you are obviously feeling much better. (Myself -- I have gone to the dogs ! [see photo]. )

max

nikkig43 said:

Forgot to mention that his
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.

Other Options...

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.

LOVEOFMYLIFE said:

Experience with R CHOP Diffuse Large B Cell T Cell Rich Lymphoma

My husband was diagnosed in late 2009. He was 2 weeks away from deaths door. His bone marrow was almost 100% full of cancer. He had 8 cycles of RCHOP and was very ill but your husband's experience may be totally different. In my husband's case he went into septic shock and required several blood and platelet transfusions. He was hospitalized 12 times in an 8 month period. He had tumors on his spine and could have become permanently paralyzed so they gave high doses of steroids, radiation, spinal chemo and then R-CHOP. Time was of the essence so he got hit with a lot in a very short period of time. He was in remission for two years but just relapsed and is already at stage 3 eventhough they were doing CAT scans every three months. He starts RICE and then he goes for a stem cell transplant. Hoping for the best expecting the worst.

So sorry

You are facing what we all dread.  My husband is in remission with Mantle Cell.  Like your husband, he was on death's door with 90% of his bone marrow packed.  I can only imagine what you are going through, I go through it in my head all the time.  Our thoughts are with you and we are hoping for a good outcome.  They are on top of it this time so that is in his favor.  You know you are not alone, we all care.  Bill and Becky

Zedo said:

Very Promising Cancer Vaccine for NHL

Hi, everyone. I was recently diagosed with Stage II B NHL, but have yet to start treatment (insurance dillemma)

The Company:
While waiting to start therapy, I have done a lot of research, including a visit to the corporate headquarters of Biovest here in Tampa  http://en.wikipedia.org/wiki/Biovest
who are the makers of BiovaxID  http://www.biovest.com/cancer-vaccine-technology/biovaxidr/personalized-cancer-vaccine

The History:
They were very nice people, however were quite frustrated that the FDA has forced them to redo clinical trials over a trivial technicality. This put a great strain of the companies finacials, and they have since filed for chapter 11 protection and are currently pursuing approvals from Europe and Canada, who have accepted the basis of the initial completed clinical trials.
http://www.businesswire.com/news/home/20130307006417/en/Biovest-Files-Recapitalization-Plan-Strengthen-Balance-Sheet

If you live in Europe or Canada, this treatment may be available to you soon. If you live in the US, the trials will be starting again shortly, as soon as they are set up to take and freeze/store biopsy samples.  4 months ago, the director told me they would be ready to restart clinical trials in the US in 3-5 months, so Im assuming they should be starting trials soon.

The Catch:
Providing the biopy sample for BiovaxID *must* be step one in your treatment plan. They need to aquire a pristine sample of your cancer before any other treatment begins. The sample would then be frozen until you complete your other therapy, at which point they would manufacture your personalized therapy from the stored sample.

Additionally:
I was informed that if you have a small low stage tumor, that BiovaxID may be the ONLY required therapy you would need, as in no chemotherapy of any kind would be required.  BiovaxID can both kill the cancer and reduce the tumor to an extent, plus provide the vaccine effect for about 8-10 years. This is great news, because if they could start catching these lymphoma cancers earlier on, this would practically be a cure with almost no negative side effects.

As soon as I have a good day, I plan to re-visit Biovest to get a current update directly from them, since the webpage seems to be a little dated. I'll post any follow-up news here.

Good info

Thank you so much for sharing such good information.  We always like to hear whatever is new.  Welcome to this site.  You will find some very nice caring people here who will be a good support as you need us.  My husband is a year in remission with Mantle Cell Lymphoma but there will be those who have your type commenting.  We sure hope your ins. straightens out soon and you can start your treatment.  Most of us have successful stories to tell.  Know that you are not alone. Bill & Becky