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DIFFUSE LARGE B-CELL LYMPHOMA

Phineas326
Posts: 4
Joined: May 2013

I'M VERY NEW AT THIS and cannot navigate this site very well (i.e., AT ALL) Any help would be greatly appreciated. E.g., how do I find my posts, which I think are blogs? Thank you.

Phineas326
Posts: 4
Joined: May 2013

Hi. I'm a 59 year old WMD with newly diagnosed DLBCL after an open biopsy to remove paraspinal tumor at L2. L2 spine removed, as well as L1 and L3 partially. Beginning R-epoch in-hospital on 5/20/2013, and am curious and a little anxious. Any words of wisdom about how to deal with treatment side effects objectively would be appreciated. Not really interested in prayer advice, etc. I have read many of the blogs and find some of them very helpful in answering questions about this 8 cycle treatment, which I will begin soom. Is it better/worse/different after consecutive treatments?

Rocquie's picture
Rocquie
Posts: 570
Joined: Mar 2013

Phineas, I hope you will find the answers you are looking for at this site. There are people here with different lymphomas and different treatments. I have a different lymphoma from yours and my treatment is different. I certainly understand your anxiety--I think I am the queen of anxiety. As far as advice on dealing with side effects, they are so varied, I would recommend you address them here as separate questions, as they arise. And who knows, maybe you'll be one of the lucky ones without much trouble with side effects.

As far as your last question, I'm not sure what you mean by "it" being better/worse/different after treatment. Do you mean the lymphoma itself? The outcome? The side effects of treatment? However, I can tell you that I felt much, much better from my symptomatic lymphoma after my first chemo, despite the side effects.

Not interested in prayer advice, that's OK. Everyone has their own beliefs and I respect that. But do you accept cyber (((hugs))). I give a lot of them.

Rocquie

 

jimwins's picture
jimwins
Posts: 2108
Joined: Aug 2011

Hi Phineas, I just wanted to welcome you to the site here.  Very good folks here.  I had the same treatment of R-EPOCH in the hospital like you except I had 6 cycles.  Side effects vary with individuals but it wasn't as bad as I expected - no picnic but very doable.  You can click on my picture and read some about my journey.

I'm getting ready to go out of town and will try to write more later.  I will be 2 years in remisson in October so know there is hope and    lymphoma is very treatable and even curable (Diffuse Large B Cell is curable).  Most everyone experiences fatigue that gets progressively worse through the cycles.  You will most likely lose hair (everywhere) and prednisone can do a number on most of us (can't sleep,  emotional, increased appetite at times, etc.).  Anxiety is normal and if you are not on anti-anxiety meds, I highly recommend it (Ativan is often prescribed and it did wonders for me). I'll discuss more later and feel free to ask questions.  By your third cycle, it will be more routine and less scary.  Please know you are not alone and you have friends here...

Big hugs - Jim

 

Phineas326
Posts: 4
Joined: May 2013

I read your remarks with the most interest. I was perfectly happy and healthy (?) HA until that fateful trip to my MD in March. Mine was misdiagnosed at first as plasmocytoma, but thru a series of contrast studies and biopsies, including the last awful one, a great team of MDs were able to put a name to mine that made everything else make sense. I never thought I'd hope for lymphoma, as opposed to plasmocytoma, but here I am. It's all still very surreal. All this just to reach a stepping-off point. Brother! Anyway, in 2 days, my journey begins. I'm nothing if not optimistic and pretty fit, so I'm planning to try and keep a postive outlook and fight the good fight. I'm a single parent with 3 daughters in college. One doesn't know yet because her last final is May 23. I only got a definitive diagnosis May 9. A white lie will suffice til May 24. I let my youngest daughter give me a mohawk, which she loved! but then the neurosurgeon dinged it when he put in the Ommaya reservoir, so I just buzzed the rest off. I'm not vain, and my hair was only an inch long maybe, but I am glad to learn I may get to keep my eyebrows and eyelashes, perhaps my goatee. None of that matters much. My best friend suffered throught anal CA and was so puny for so long after chemo that that was the image I kept conjuring up and it was/is no picnic. He's still puny, but getting better slowly, and is in remission. The nausea, vomiting and diarrhea - all at once - aren't something to look forward to either. I, unlike him, will be in hospital for 5 1/2 days every 3 weeks, so my MD assures me that I will be frontloaded with meds to help prophylactically as much as possible. We'll see.

 

Is the chemo all delivered ther first 24 hours, then the management protocol administered the next 4 days? Do you know about that? That's on my list of questions. I will be getting Nuelasta injections at the beginning of each cycle and understand that this is a great benefit to my immune system, but of course also has side effects. Thank you for you posts and I'll look forward to reading your next posts. Enjoy your time out of town. Thanks again.

jimwins's picture
jimwins
Posts: 2108
Joined: Aug 2011

I don't recall the exact details of my chemo but it was NOT all given in the first 24 hours.  I think two drugs were given once during the cycle (one in the beginning and the other at the end of the cycle).  The remainder were infused continuously over the 5 days.  Occasionally other items were given as well (saline, other meds or supplements as needed).   They drew blood regularly and monitored many things (temp, blood pressure, blood counts, electrolytes, etc.).  I was given senokot (laxative) every day to prevent constipation.  They also gave anti-nausea meds and I think that was part of the infusion but if I felt the least bit sick, I could request medication for nausea at anytime.  

You will learn the early warning signs of nausea- for me it was increased salivation.  If I got medication soon after that symptom (for me), I didn't have problems.  I was very fortunate that I had few problems with nausea and side effects and most occurred during the first or second cycle.  I learned what I could do to prepare for future cycles (for me).  I started taking senekot the day before I went in for treatment because constipation was a real issue for me.   The one time I did vomit was during the first cycle and I'm pretty sure it was the result of constipation.  I had a mouth sore once and am pretty sure it was because I ate some very acidic food during treatment.  I avoided acidic food of any kind during and for about a week after treatment and never had an issue with mouth sores again.  

I'm not sure why they are giving you neulasta at the beginning unless it's the result of new research/findings.  I had to come in for a neulasta shot shortly after treatments to get my neutrophils back up.  Neulasta caused bone aches 2-3 days after theshot and lasted for a few days.  I would compare it to having a nasty flu (as far as the aching).  I had pain medication from a surgery that they okayed me to take and that helped quite a bit.  Also, many have recommended taking claritin to help with reactions to neulasta.  I never did as I didn't know about it at the time.  

Prednisone - in some ways, it was one of the worst parts of treatment.  It hyped me up, I ate like a pig (some days 6 meals) and I had real problems sleeping (even with ambien and ativan). I was more emotional, had less/no filter on my mouth and got a little "witchy" at times.  When the prednisone wore off, I pretty much just crashed and slept a lot.   

Neutropenia - when your blood counts are low (neutrophils), you are at risk for infection so you must do your best to avoid infection by avoiding crowds, sick people, raw foods or anything that puts you at risk.  It's a good idea to have hand sanitizer available and use it often.  I was instructed to monitor my temperature and to call in if it got above a certain level (100.5 I think).  Once, I had to go back to the hospital because I had a fever and was given lots of antibiotics and monitored.  Of course I hated this but the nurse explained it was better to come in and only be there a few days rather than allow an infection to get out of control and require hospitalization perhaps for weeks and interrupt chemo.  I learned to listen to my nurses - especially the ones who had experience and seemed to really know their stuff.

Please bear in mind this is based on what I can recall and reactions to treatment can vary individually.  I finished treatment nearly two years ago and some things may have changed with the protocols.  As others have said, it helps to break this down into small chunks and celebrate mini milestones along the way.  This will be over before you know it.  Be good to yourself.   I hope all goes well for you. 

Hugs - Jim

teabag43
Posts: 8
Joined: Jun 2013

What dosage of senakot did you take.  My hubby is having a terrible time with constipation and after his first chemo we did start stool softeners and senakot but too late.  Finally he took a dose of cipro salax and even that took over 12 hr to work.  He has weaned down off prednisone.  Prednisone was prescribed to him for 5 days prior to Chemo because of fluid in his abdomen (he has a pancreatic lymphoma tumour).  It worked wonders but after his first 5 days after chemo they are weaning him down.  He is presently taking on 5mg vs the 100 mg that he was on for symptoms.  Hopefully after the next chemo when they put him back up to 100mg for 5 days then crash (no wean this time) the abdominal symptoms will reduce.  He was great with nausea until the 9th day after 3 days of constipation but fortunately the nausea pills looked after that.  Meanwhile he has lost some additional weight due to the last couple of days.  Any advice will be appreciated. 

jimwins's picture
jimwins
Posts: 2108
Joined: Aug 2011

Sorry for the late response and welcome to the site - wonderful folks here.  I don't recall the dosage they gave me in the hospital but I'm pretty sure they gave me at least one pill a day (morning) and more if I requested it.  I bought over the counter version and started taking it a day or two before my next treatment and for a day or two after.  I also tried to include more fiber and fluids in my diet which seemed to help also.

I would talk with a nurse or doctor about what they would recommend.  

Again, welcome and let us know how he's doing.

Hugs - Jim

teabag43
Posts: 8
Joined: Jun 2013

My husband ended up in the hospital for 4 days because of fever.  They gave him shots of Neutrogen.  He just had his second chemo and he will be having shots for 7 days to prevent this happening again.  They removed Vincristine because he was developing slight drop foot.  This worrys me as it is just one less soldier as part of R-chop to fight his Diffuse Large Cell B lymphoma.  He had a 7cm tumor on his pancreas.  He is feeling very good with no symptoms at present so I am hopeful.  Thought I would ask the Dr about giving Vinblastine as it had lower ratio of neuropathy occuring.   The Constipation is now well under control.  Thank you for any advice that you may have.

coachmike
Posts: 153
Joined: Oct 2011

Hi

 

I too had DLBCL and did R Epoch. Its administered over 4 days for 24 hours. Its a continious infusion of different chemos throughout the four days.

 

The main thing that I had to deal with was the fatigue. I was very blessed to have mild side effects. Your mental state has a lot of power, be strong and refuse to fail!

Malka28
Posts: 2
Joined: May 2013

I had EPOCH for 6 cycles. I think the major point I wish someone would had prepared me for was the fact that the post chemo period was the worst of it (once you get home from the hospital,  after the actual infusion). You will feel like you literally got hit by a bus. Another major point you should keep in your mind is to take one day at a time and give yourself short term goals. In my experience every day my symptoms varied, and each day was a different type of battle. If  you have nausea take antiemetics, if you feel pain take an analgesic, don't try to suck it up or deal with it on your own.  Take laxitives!  vincristine can give you horrible constipation 

I lost all my hair, even my nose hair. I lost weight after the first cycle but each cycle after that i think i may have gained a little weight from my normal. also got nulasta after each cycle and it gave me horrible body aches. There are documented bone and joint pains as a side effect but in my experience my entire body hurt (abdomen, scalp, throat) so make sure you have good pain medication from your doctor before you get it. 

 

Comilio2
Posts: 2
Joined: Jul 2013

Not sure if this so the right place to put this but I was just diagnosed with diffuse large B-Cell lymphoma I am really scared and to what is coming and if I even have a chance of surviving this. I have not been staged yet start all that stuff tomorrow. I Mr I put this in the wrong place let me know and I will remove it.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Any place is the right place when we are discussing Lymphoma. I think most people read thru all the post. At least I do anyway. John 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Comilio2, and "Welcome" to the group...

 You are at the right place, and being scared is totally understandable! We were all scared upon hearing we might have cancer. The hardest part for me  in the beginning was dealing with all of the testing and waiting for results. Soooooo many tests had to be done before I received a confirmed diagnosis and treatment plan. I won't even tell you to stay calm and peaceful because it's too soon in your journey to go there. I do hope you have support from family and friends and someone to go with you for testing and doctor appointments. Two sets of ears is much easier. I also recommend to take takes notes, or have someone else do it for you. There is so much information tossed out in the beginning that it becomes very overwhelming. Please come back here for support...ANYTIME! We can help you through this scary part during testing and beyond. You are not alone. 

Best wishes...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62)

In remission since April 2013

Mary N.
Posts: 99
Joined: Jun 2013

Hi,

I have diffuse large B cell non hodgkins but it is in the brain.  From what I understand DLBCL is fairly common ( as far as common can be for a rare disease) and there are protocols that seem to be effective.  I wish you luck.  Continue to look forward.  Life is possible.  As questions - write them down ahead of time.  Have someone go with you if possible.  Try to be positive.  Eat well - might try juicing.  If you need to or don't feel comfortable, get a second or third opinion.  Chemo is not pleasant but you can live through it.  Blessings.

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Comilio2,

 

You are in the right place.  Getting that initial diagnosis can be very scary.  We have all been where you are.  We are here for you.  I felt the same way you did.  I couldn't see myself as a survivor...only as surviving.  Now, almost 6 years later, I am here to tell you.....you can winthefight too.

 

Big hugs and blessings to you.

Please keep us posted. 

Win(thefight).

 

 

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