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Follicular Lymphoma is back

RDNesbitt's picture
RDNesbitt
Posts: 6
Joined: Jul 2011

HI to all. I'm new here and will give you some of my background. I'm 74 years of age. In 2001 I discovered a large lump in my stomach on the right side. I had retired and thought I was getting fat. No so. I had a large tumor. After all the test I was given 5 treatment of CHOP. After test I was given 3 more treatments of CHOP. At this point the tumor was about 5.5cm, so I had 23 treatment of radiation and it was gone. In 2003 I discovered a lump in the roof of my mouth. Same thing, follicular lymphoma. This time I had rituxan and zevalin. This worked until about 2007 and I started getting nodes in my neck area. I had them removed with no problems. In 2009 I got one behind my left ear and this was a very touchy operation to remove it as there are 5 nerves there, but all went well. Now I have another node in the roof of my mouth again. I have had Pet scans for the last few years and have been doing a lot of watch and wait. We have been watching 2 nodes in the groin area, one in the chest area and they have grown very little. So now I have about a total of 6-7 nodes in the 2-3cm range. The one that was operated on behind my left ear has come back and seem to be growing faster. My Oncologist has recommended that it time to chemo again. He thinks I should have Bendamustine and rituxan. I have a bone marrow test next week and we will go from there. I have been reading on this site and will be interested in all comments on the B-R treatments. Thanks Dick

CountryGal7557
Posts: 165
Joined: Feb 2011

Hi Dick, you have had quite the journey and sound optimistic. Good for you! at 74 I don't know if you still have your hair, but with Bendamustine you won't loose it like with other chemos! so that is good news! Also, Bendamustine is suppose to be the latest improvement for NHL patients, in that it attacks the cancer B cells stronger along with Rituxan. Tobether they are better is what my Oncologist has explained. I just take his word for it. So that is also good news that you oncologist knows of the latest and greatest. there are YouTube.com videos about bendamustine. they were helpful to me.

On this site I've learned that every one of us has a unique plan. Not sure if it's because of the oncologist we have or if it's the location,size,our health, our age, our immune system, etc. mine was in remission after 4 treatments.

We have to trust who is on our Medical Team and if not, then find someone we do.
Let us know how it goes for you!
Hugs
Janelle

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Dick - welcome to the site! You'll meet many lovely people here who have helped me greatly through the past 2 years. I'm 68, was diagnosed Aug. '09 with Follicular NHL, B cell, Indolent, stage 4. Have you been to a major cancer center yet? We live just 2 hours from Moffitt in Tampa and my local Oncologist is one of 9 in the Space Coast Cancer group that's affiliated with Moffitt. My local Dr. suggested after 9 months of watchful waiting that I go to Moffitt for a second opinion and I've now been there 4 times. When my small abdominal tumor jumped from your size to 15 cm, we began CVP-R right away. 6 months later, it shrank to 9.5 but still too large. Went on 6 months of Treanda/ Bendamustine- R last November and finished up mid April. I'd been spoiled by the first one and will be honest and tell you that B-R was a difficult chemo for me. I lost 14 pounds the first week and was much weaker and more fatigued from it. It IS the newest chemo and I was told the success rate of it is 78%, compared to 52% with CHOP. You don't lose your hair - mine had thinned badly from CVP-R but started growing in thickly and curly on B-R. Maybe that's more important to a woman than a man! My Oncologist had planned on having treatment every 28 days (not 21 with this one as most are) for 8 treatments, but I was so weak after 6 he stopped. The size was reduced from 9.5cm to 3.8cm with B/R. Still not a full remission but much better.

Keep in touch and let us know how you're doing - will try to answer any questions you have as you go along - Fondly, Fran

RDNesbitt's picture
RDNesbitt
Posts: 6
Joined: Jul 2011

Thanks for the reply. I know tomorrow about the results of the bone Marrow. They also installed a infuse-a-port. I'm glad they did because after having chop in 2001 my veins are very hard to find. I have read about B-R and some of the side effects. They don't seem to be as bad as chop. I guess the big thing is the WBC. When I had chop my WBC only dropped once and I was given a shot and it came back up very fast. The rituxan has worked very good on me and I've had very little problems with it in the past. I guess the worst part is the waiting to get treatment started. Will keep you posted when I start and how I,m doing. My wife and I go to Dade City at Travelers Rest and spend our winters, but maybe will be late getting there.

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

Hi Dick,
I was just wondering how your BMB test went? Did you have sedation, if yes...what kind? Mine was rather brutal and will NEVER EVER do it again without being knocked out. Please keep us informed on your situation, as it is very helpful getting information from folks that have been "around the block" (so to speak), with their long term lymphoma experiences. You give me great hope knowing you have been fighting this since 2001 and still doing so good. I hope your chemo treatments go well for you, and remember we are always here to help...anytime. Best wishes...Sue age 60..(FNHL(indolent)-stage3-grade2-typeA-diagnosed June 2010)

RDNesbitt's picture
RDNesbitt
Posts: 6
Joined: Jul 2011

My Bone Marrow test went good. They put me out to do it and had no pain at the time or afterwards. Same with the port. I started taking Allopurinol today and will have Rituzan on Monday and Bendamustine on Tuesday. Will let all know how I make out.

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

Hi,
So glad to hear your BMB and port placement went well and pain free. Wish I could say the same when I had my BMB done last year. I had no problems with the port surgery, nor any pain afterwards...just a little sore for a couple of days. I'll be thinking good positive thoughts that your treatments go well. Be sure to keep us informed.
Thanks for sharing and best wishes...Sue (FNHL-2-3A-6/10)

RDNesbitt's picture
RDNesbitt
Posts: 6
Joined: Jul 2011

I got through the first treatment ok. I had steroids along with the treatments. Rituxan took about 4 hrs and went well. Then one hr of Bendamustine. Next day was just Bendamustine. I felt good the third day but the 4th and 5th were down days. No energy. I have put on a little weight this summer and thought I would lose some. I'm eating like a horse. I,m having stomach bloating. I'm taking gas pills which help. Most mornings the bloating is gone. Today is my 9th day and my energy level seem to be getting lower. I'm having blood test very Monday to keep track of the blood count. I have 5 small nodes that I can see and feel. All have gotten smaller. One has almost gone completely. I have false teeth and could not keep the top set in and that is where one node was, right in the roof of my mouth. After the 3rd day the node had gone way down and my top teeth work fine now. The port works good and have had no problems with it. Will keep all posted as time passes.

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

Hi Dick,
It all sounds good. The steroids increase the appetite, and if memory serves me right, the increased fatique is quite common also. Fran/cookingirl did the Bendamustin, so maybe she will pop in and confirm what you are experiencing. My chemo was CVP-R..less harsh on the body. Glad the port is working well and no problems with it. I had my Rituxan maint infusion on Monday and I'm feeling just fine...as a matter of fact I'm babysitting my 4 month old granddaughter as I type. Thanks for keeping us informed and I hope you have a good week.
Take care...Sue (FNHL-2-3A-6/10)

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

HI Sue and Dick - and here I am! First time to check this site in a month - hubby and I had a wonderful 3 weeks in VA, WV and MD visiting children, Grans and friends! Just home yesterday in time for my PET scan this morning. Was so wonderful to be with young people who had NO health issues, enjoy the smiles and laughter of children and attend the 1st birthday party of my only grandson, adorable 25 lb. little Porter who never stops smiling! A better healer than medicine for the soul.

I'm glad you got along so well with your first B/R, Dick. I ended up losing about 25 lbs. on that chemo. You're right - day after is great, then days 4 & 5 hit like a ton of bricks. If you are like myself, you will grow more and more fatigued each month until your cycles are finished. Just accept that's part of the treatment and don't try to keep going at your regular pace. I could and did go 18 hour days before chemo, but this will be your new normal and nothing at all you can do about it but go with the flow. My B/R ended April 18 and two months later, full high energy had returned. I feel terrific this summer, hair has grown back (which I lost on CVP-R, not B/R) and no one on our trip could believe I still have a tumor because I looked and acted just like I used to! So brighter days are ahead for you - just have to get through the treatment.

How very encouraging after only one treatment your nodes are decreasing and disappearing - YEAH! So happy for you. Most with smaller ones experience this, and some have written on this site after 2 or 3 months they've reached full remission. Hope that will be your case.
If you look back to about 6 months ago posts for Bendamustine, there were numerous postings when I was asking questions and you may learn from them. Not sure how long they are kept but know they would be helpful for you to read.

Sue - glad you feel like babysitting that adorable little granddaughter several days a week and hope it continues. My year old Porter is in constant, pepetual motion every waking minute and know I couldn't watch him all day, so enjoy until that time comes!

Hope all's well in your world - Fondly, Fran

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

Hi Fran,
You sound wonderful! I'm so happy your energy is up and your feeling so good! You had a rough go of it last winter and you more than earned the good days your having now! All is fine with me, and yes...I truely enjoy my time with Lizzy. I doubt I could do this 5 days a week, but so far it's totally do-able for 2 1/2 days each week. I think her mom plans to keep working part time for the next few years. They can financially afford it, so I'm thrilled she didn't go back full time. It's a win win for all of us, especially for Lizzy. Let us know how your trip to California goes...sounds fun! Maybe you can meet Lisha...that would be so nice! You take care... Much love...Sue (FNHL-2-3A-6/10)

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

That LIZZY just getS cuter all the time. I know how much yu are enjoying her. I know she brings you joy from the top of your heaD to the tip of your big toe:)

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

So good to see you post and hear about your great time with famiy and friends. Please get the book Outsmart you Cancer by Tanya Pierce. You will be amazed. My grandchilden and son and wife might move to Calif. I am calm and have put it in God's hands. I am not in control:) Love ya Joanie

RDNesbitt's picture
RDNesbitt
Posts: 6
Joined: Jul 2011

Hi Cookingirl, Good to here you are doing good. My question is after nodes have gone down so quick, why are they getting larger again. Is this normal? Maybe that is why they recommend 6 treatment. Must be it takes a few treatment to really knock them in the head and keep them down. Did you experience this with your nodes? I have been feeling good after 16 days and hope it stays this was till my next treatment on the 12th of Sept.

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Sorry to hear about your long saga---I am new to NHL---1 week ago diagnosis-- Grade 1, Stage 4, Indolent follicular. start Bendamustine/Rituxan Wed. 8/31--So the info from all of you about your experiences with it is helpful ---Had teaching re: chemo today--Have many praying side effects will be minimal-- I have no externally visible nodes at this time; all are internal--I'm hopeful regarding the treatment and will look on You tube to see if I can find the info re Benda--
I'll try to report back my experiences;

Keep cool--may the Lord uplift each of you and your families, especially during your time of trials--Susan

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