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First cycle of R-CHOP on July 25 (DLBCL)

Teulon12
Posts: 4
Joined: Jun 2013

Hello all. Sending out an update and looking for any wisdom to prep me. June 22nd my case went to Cancer Care. Since then things are moving fast!  I have been scanned, poked and drained so many times in past couple weeks. Had tons of bloodwork, MUGA, PET and another CT scan done. Oh how could I forget .... That lovely Bone Marrow aspiration and biopsy was also done. So far, I know that I have aggressive NHL DLBCL stage 3 possibly stage 4 depending on bone marrow results. I will be getting all results on the 18th and discuss everything in full with my nurse and lead doctor. I have volunteered for a clinical trial. Efficacy of subcutaneous Rituximab versus intravenous. I still feel healthy but have noticed what I think might be some slightly enlarged nodes.  Plan is to start R-CHOP on July 25th. Will be 6 cycles with 21 days between each cycle. First treatment is expected to take 8 hrs just to monitor for reactions etc

Hope everyone is still fighting the fight strong and hard. 

Bonnie

scndshot
Posts: 5
Joined: Jul 2013

Hi Bonnie,

Best of luck with R-Chop.  I finished mine last Dec...same as you, 6 cycles every 3 weeks.  I was stage 4.  I actually go for a CT Scan next week, so cross your fingers.  Regarding the chemo, I had a really easy time with it.  My blood counts stayed up....so I never needed the neulasta shots.  The Prednisone had me bouncing off the walls but I didnt' feel bad, just anxious.  I think one of the keys to my feeling good was I kept the anti-nausea medicine in my body at all times.  So, I was taking the Zofran regligiously even if I had to set my clock for 2am to take it....keep the MEDS in your body...that's my best advice.  8 hours sounds about right for the first one...they'll get a little shorter as you go along.  Best of luck with the trial..I did the traditional Rituxan via IV.  All the best luck and wishes to you...hoping the bone marrow is negative too.

Mark

Shoopy
Posts: 210
Joined: Jul 2013

Teulon...this is a repost of a message I posted for another person asking the same question:

I was told I have "lymphoma" on May19th, 2013 and officially diagnosed with DLBCL Stage IV on May 24th, 2013 (bone marrow clean).  I am 48yrs old and was in pretty good health.  It can really throw you for a loop!  I have no history of any cancer in my family.  Of course, the first questions I asked the oconologist were "How did I get this?", "Why did it happen?".  His response was unsettling, "We don't know what causes it or why you have it."

So, here's what I've learned over the last 8 weeks:

Don't freak out about the staging.  I completely freaked when I heard "Stage IV".  What I've learned is that different cancers have different stagings with different prognosises.  For DLBCL, Stage 3 is used when lymph nodes are impacted above and below the diaphram.  My PET scan showed a 1cmX1.5cm (dime size) mark on my lung (something that both the onconlogist and pulminologist think will go away with treatment).  However...because of that small PET light...I have to be classified as Stage IV.

DLBCL is normally aggressive.  It certainly was for me.  I went from working out 2-3X a week...to unable to walk from couch to frig for a glass of water with 7-10 days. 

The frustrating part is waiting for the pre-treatment stuff: PET scan, trim port installation, heart test, etc.

My treatment plan is 6-8 treatments of R-CHOP every 3 weeks (all IV).  I have completed 2 treatments so far and feel great compare to 8 weeks ago.

The treatment isn't bad in my opinion.  They have me on Prednisone for 4.5 days after.  A word of warning: read up on Prednisone.  Everyone reacts differently but I had a great feeling...almost false feeling that I was better than I really was.  I'm finding that once I stop taking the Prednisone...I have 2-3 days of feeling mentally crappy.  I have no been sick at all.  I am fighting a bit of fatigue which I suspect will get more difficult with every treatment.  Talk with your doctor...there are things you can do to help with this.  The Lunasta shot has given me mild bone pain...mainly in hips and upper arms.

My blood counts were VERY low before my first treatment.  I ended up receiving a transfusion about 10 days after...again...it made a HUGE difference.  I find out for sure tomorrow (7/12) if my blood counts have rebounded since second treatment but I feel like they have.

So, anyway, the doctors are all happy because they can't feel any of my lymph nodes since the first treatment (my biopsy lymph node was 4.5cm).  My biggest "pain" has been my spleen.  I was told it had become the size of a large grapefruit.  I needed hydrocondone to sleep at night and sometimes during the day.  Since my second treatment, it has dramatically shrunk and I no longer have pain with it.

I know this is a lot of info...sort of a brain dump on my part (sorry for misspellings).  Let me know if you have any questions as you begin this ride.

I will tell you this...it is amazing what faith, family, friends, prayer, positive attitude...and a ton of toxic drugs will do for a guy!

Rocquie's picture
Rocquie
Posts: 496
Joined: Mar 2013

Bonnie,

I had 8 cycles of R-CHOP. I did have side-effects but the main thing is it worked. I have learned that everyone reacts differently with this "cocktail" so rehashing my experience won't necessarily help you. I would like to say, however, that I found it easier and easier with each treatment. After the first two, my doctor had, and I had figured out how it affected me. I knew to go ahead and take an ativan each morning along with my prednisone and enjoyed the extra energy. I never suffered with nausea. I learned what to take, and when, to prevent constipation. I learned that taking over-the-counter (and generic) claritin prevented bone pain from the Neulasta shot.

For fatigue, I would suggest you give in to your down-time. Nap when you need to. Read, watch TV, listen to music, surf the internet, knit, Pray, whatever you enjoy doing. Getting over a diagnosis like we have been handed is hard work.

I'll be watching for your progress and praying for you.

(((Hugs)))

Rocquie

Rocquie's picture
Rocquie
Posts: 496
Joined: Mar 2013

Bonnie,

I had 8 cycles of R-CHOP. I did have side-effects but the main thing is it worked. I have learned that everyone reacts differently with this "cocktail" so rehashing my experience won't necessarily help you. I would like to say, however, that I found it easier and easier with each treatment. After the first two, my doctor had, and I had figured out how it affected me. I knew to go ahead and take an ativan each morning along with my prednisone and enjoyed the extra energy. I never suffered with nausea. I learned what to take, and when, to prevent constipation. I learned that taking over-the-counter (and generic) claritin prevented bone pain from the Neulasta shot.

For fatigue, I would suggest you give in to your down-time. Nap when you need to. Read, watch TV, listen to music, surf the internet, knit, Pray, whatever you enjoy doing. Getting over a diagnosis like we have been handed is hard work.

I'll be watching for your progress and praying for you.

(((Hugs)))

Rocquie

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