Treating Asymptomatic Indolent Follicular NHL?

Don

Hi, I am new to the forum and am 61 years old.
During a routine physical in September 2007, they found a thoracic tumor which turned out to be B Cell Follicular NHL (Grade 1; Stage IIIA). Nodal groups involved include the groin, abdomen, and chest (thorax) . After many tests, the Ocologist put me on a "watch and wait" as it was not causing problems; that was in December 2007. Knowing that I had the disease has caused me no angst.

Since that time much has happened. In April of 2008, I was operated on for a herneated cervical disc (diskectomy and fusion) as I was losing coordination and strength in my legs and arms (THAT caused me angst). Since the operation, much has improved but I will never be back to my original capacity. However, I am able to do all household chores including splitting firewood (my wife cringes when I start the chainsaw) and am able to work out in the gym and exercise on the eliptical trainers and treadmills. I am even able to ride a bicycle (weather permitting). My strength and endurance has greatly improved since the operation. I am fairly active in Knights of Columbus and the Harley Owners Group; because of balance problems, I had "outrigger" wheels put on my Harley. I am retired from USMC and from teaching (Math), but have gone back to substitute teaching as hanging around the house with two dogs was getting to me. My wife works (too hard) and my 10 year old granddaughter lives with us. Friends consider me "robust" and I feel fine.

A scan in May of 2008 revealed no progression of the NHL.

My oncologist moved to Houston and now I have a new on from the same practice.

A scan in January 2009 revealed progression of the disease and the oncologist wants to start treatment (R-CHOP) but is kind of leaving it up to me (I met with him March 2, 2009); waiting will not be life threatening at this time. He does not know if this progression is part of the normal "waxing/waning" nature of the disease. LDH and all blood tests at the time of the scan were normal and I am not showing any B-symptoms (weight GAIN has cause me angst). He has repeated the blood tests: Hemoglobin is fine and Blood Count fine; I am still waiting for the LDH results. I have peripheral neuropathy (numb hands and burning muscles in my legs) which is a result of the neck problem.

They are ready to go and insurance says yes; but I am reluctant. I guess that now I am facing that I have the disease and it is causing me some angst as now I am at the beginning of the long treatment road. Any comments or suggestions? Once I make a decision, I tend to go with it.
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

joepet · Senior User Joined: 18 Dec 2008 Posts: 375 Location: Japan

Hi Don. I'm sorry that you have to be going through this.

I am not as familiar with follicular NHL, so please don't take me as an authoratative source on the matter, but all studies that I am aware of have shown that R-CHOP, combined later on with maintenance Rituxan therapy, extends the average lifespan of follicular patients. And generally, the earlier in the progression you begin the treatment, the better the odds of improvement. You would need to balance that out with quality of life issues associated with being on R-CHOP (which could be significant given your active lifestyle), and the very slim, but not zero, chance of a fatal reaction to the treatment to come to a decision.

If your sole priority is to maximize your lifespan, then I would say that beginning treatment now is your best bet.

Bets of luck with however you decide to proceed.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan

Hi Don

So sorry to see you posting here. Nice to see another Motorbike rider but Very Happy

here's a link for you to a webcast

http://www.presentme.com/FLASH/20061027LRFCheson/

there's a few more on your particular type of lymphoma here but you need to go through the list to find them

http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367#

Go for it and learn as much as you can the more you know the less you fear.
Don't worry you will be OK you have a fine fighting attitude and it will see you through the tough times.

Hang in there Bro and fight the good fight Exclamation

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

Don

Chemoman,

How did you find all of these webcasts...I have been on the internet for days and have not seen these.

Anyway, I have some new questions for my oncologist based on these...especially since the scan showed nothing in the liver, spleen, kidneys, etc.

Sorry about spelling "elliptical" wrong on my first post...not good for a Math teacher. What kind of motorcycle do you have? Mine is an '06 Harley Dyna-Glide.

Thanks...Don
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

ChemoMan

Hi Don

I Just sorta found them...very interesting hey ! Its worthwhile checking back every now and then as new ones gets posted. I found them invaluable and I'm glad you managed to get new questions from them.

I have a metric cruiser Vulcan 900. I used to ride when I was young, did it for 15 years but in those days it was 4 pot screamers. We bought the Vulcan just before the diagnosis , but I figured something was not right and if I didn't get back into it it might never happen. When we were in our 20's Jane and I did some monster trips into the the North of SA and a giant one over to Perth from Adelaide and we were both keen to do it all again. Our dream is to go right around Australia on highway one.

Them Harley's are fine bikes they are very popular here in Oz, but you are starting to see all sorts of bikes everywhere now.... a sign of the time I guess.

Hang in there Bro and have safe journeys Smile

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

Don

Hey ChemoMan,

Thanks for your update! What do you mean "when you were younger"? You are only 52 and now that you are in remission...you can start riding again!

When I was in the USMC, our ship pulled into Sydney for about 9 days for repairs after a Western Pacific cruise (May of 1987 I believe). In my honest opinion, Austrailians are the nicest people in the world! We had a great time there.

I am trying to get psyched up to begin treatment...I am thinking that it is going to come sooner or later, and better now since I have no B symptoms.

Hang in there!

Don B
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

ChemoMan

Don't worry we have been adding up the miles on the scoot Very Happy

It drove me nuts when I was having chemo all I could do was wash the bike and dream of riding it, a chemo battered immune system meant I would not recover from a spill. I did take her out for a tiny ride twice when the urge got too much Wink

You will be OK... by now you have digested the webcasts and I'm pretty sure you feel positive about the future. Stick around if you like, we don't have too many regulars with your type of lymphoma and we sure could use the help.

All the best and keep fighting the good fight. Exclamation

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

Don

Thanks for your encouragement, ChemoMan!

Remember, my bike still has the outrigger wheels on it because of my cervical neck problems...makes it hard to ride though, as you can't lean it to turn. At least you felt good enough to ride if you wanted to.

I will keep on posting. You are lucky as you can get "Toouie's Old" (I think that is how you spell it) where you live; we can't get it here in the States. Nice Beer!

Hang in there...Don B
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

ChemoMan

Hi Don

That would be Tooheys old Smile

personally being a croweater ( South Australian) means I only drink Coopers Laughing

I used to like Coopers pale ale but I only drink light beer now and of course its Coopers. One of the best beers around is Coopers special vintage but it has a very high alcohol content ( over 8%) and kicks like a mule. Its meant to age in the bottle and is best after 2 years but by then the alcohol content gets up to 13% Shocked

You should be able to get Coopers beers as they export a lot of their product. Frank Sinatra was fan of Coopers sparkling Ale ( another kick ass beer with a high alcohol content, about 5.8% from memory)and he was responsible for getting it into the States. Most Coopers Ales sold are partly brewed in the bottle and have sludge in the bottom, here in SA we turn the Bott upside down to let it go through the beer but most normal people drink it but leave the bit at the end with the sludge.

http://www.youtube.com/watch?v=2uxTuUzgxzI

http://www.youtube.com/watch?v=BaGJFvLWDmk
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

Don

ChemoMan, You need to change your "log-in" name to "InfoMan"...you are like an encylopedia. I love the links; no one can accuse an Australian of not having a sense of humor.

I am certain that I am going to go ahead with the R-CHOP. For all you readers with the same condition, this is what I surmise: After watching the Podcasts and going through some of the other webpages, it seems to me that waiting, and thus allowing the tumors to get bigger, will lessen the chance that they will be able to get a complete remission and then have it last a decent amount of time; even if I am feeling OK now. My wife is the only one in the family that knows my decision right now, as my Aunt (my mother's sister) is going in for surgery for Uterine Cancer on Monday and I don't want to spring this on everybody else, although they have known all along that I have NHL. My Aunt has been feeling bad for quite some time, has had swollen lymph nodes in the abdomen and has been referred to Gynocologists since last October only to cancel the appointments. I hope it will have been caught in time; she is 82. By the way, my Mother has Chronic (something that starts with an L) Leukemia; I wonder if this runs in the family.

This is the first Saturaday in a while that it has been warm (75 degrees F). We had quite a bit of snow earlier in the week and today is like a spring day. I worked in the yard cleaning up some debris that have accumulated over the winter, and then went for a spin on the Harley...lots of them out today.

Well, have a good day, Mate! I'll keep you posted.

Don B
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

ChemoMan

Hi Don

Good onya mate.... you made a decision based on your research you could not really do any better.
Enjoy that Ride, We have one planned tomorrow, going to do a motorcycle escort for my cousin and his wife from Holland who is in Oz to do a trip around the country via the coast. Will probably escort him for a 100 or so miles, mainly to take him through the most scenic bits of the Adelaide hills

many safe journeys Don and don't forget to keep checking back for others with your lymphoma and keep us posted on your progress.

Good luck and here's to many more trips around the sun. Cheers Very Happy

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

joepet · Senior User Joined: 18 Dec 2008 Posts: 375 Location: Japan

Good call Don. I think you've made the right decision.

Good luck with the treatment! It's not easy, but it's definitely doable for someone like you.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

Don

Thanks for your support JoePet!

How is your's going?

You are all in my prayers.

Don B
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

joepet · Senior User Joined: 18 Dec 2008 Posts: 375 Location: Japan

I'm hanging in there, thanks for asking! Smile

The one other piece of advice I can offer is to take care not to injure yourself during treatment. Chemo alone is enough for you to deal with!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

SingleDad

What are we all bikers here??? Wink

Hi Don welcome to the new CHOP+R club.... Rolling Eyes

You've been living with the beast for a while - I got a blind date a month ago - and my version is a very aggressive gurrrrrrrl.

I'm also 61 but was relatively healthy - not so active as I had some arthritis which the R apparently was designed to deal with and in my case has.

More motion than I've had in years. Looking forward to riding - got one longish jaunt in already.

You can read my go so far with CHOP-R - I'm ten days in might give you some insight
http://cancerforums.net/viewtopic.php?t=12003

Every case differs and I'm no expert being very new but seems your decision to "get it done now" is sound as it would seem to be terrific to put it behind you entirely

I'm hoping that's for me and a side effect my arthritis being MIA for a few years.

I know about numb hands - one reason I switched to a Honda Silverwing - less vibration and no clutching and big enough storage to go shopping.

Take care - keep us posted.
_________________
Age 62
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation as a prophylactic measure.
1st Radiation Sept 9 completed Oct 1.
Cancer free scan Jan 2010 - remission confirmed
In South Africa for three months

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