Newly Diagnosed - Dilemma

Hello All,

 3 weeks ago I was diagnosed with follicular non-Hodgkin's lymphoma.  I am a 28 yr. old male, in otherwise good health and shape. 

I have a bit of a dilemma...after my surgeon gave me the diagnosis I scheduled consults with two different physicians.  They both concurred with the diagnosis but they each suggested a drastically different course of action.

The first Dr. suggested we start aggressive treatment right away and start looking towards a bone marrow transplant as the best option. The second doctor suggested that, because I have no symptoms that we should take a "watchful waiting" approach.

Both paths seem to have their pluses & minuses...has anyone been in a similar situation and is there some advice you can offer?

 

follicular NHL is an indolent, slow growing lymphoma.  The good news is that its indolent the bad news is that makes it hard to "cure".  Some of these transform into more agressive lymphomas, some resolve on their own.  Assuming its early stage disease, I would say your options are RT, chemo/RT or observation.  To me, BMT is indicated as second line therapy when other options have failed.  However, given your age, it may be the best hope for a "cure."  Be sure to check out, http://www.leukemia-lymphoma.org/hm_lls.  There may be a spot there to talk with other patients.  Its a complex problem with no easy solution.  Let us know what you come up with.

 

Hello Matymac....Please contact me via private message if you are interested in hearing about my success with complementary medicine and the modalities used. I was diagnosed in May 2004 and told at that time I would need the strongest chemo in order to "perhaps" save myself. I refused traditional treatment and instead have been following an alternative path. At this point in time I feel strong and healthy with no symptoms of disease. Shemay

On 5/23/2007 Matymac wrote:

Hello All,

 3 weeks ago I was diagnosed with follicular non-Hodgkin's lymphoma.  I am a 28 yr. old male, in otherwise good health and shape. 

I have a bit of a dilemma...after my surgeon gave me the diagnosis I scheduled consults with two different physicians.  They both concurred with the diagnosis but they each suggested a drastically different course of action.

The first Dr. suggested we start aggressive treatment right away and start looking towards a bone marrow transplant as the best option. The second doctor suggested that, because I have no symptoms that we should take a "watchful waiting" approach.

Both paths seem to have their pluses & minuses...has anyone been in a similar situation and is there some advice you can offer?

 

 

On 5/23/2007 Shemay wrote:

Hello Matymac....Please contact me via private message if you are interested in hearing about my success with complementary medicine and the modalities used. I was diagnosed in May 2004 and told at that time I would need the strongest chemo in order to "perhaps" save myself. I refused traditional treatment and instead have been following an alternative path. At this point in time I feel strong and healthy with no symptoms of disease. Shemay

 

On 5/23/2007 Matymac wrote:

Hello All,

 3 weeks ago I was diagnosed with follicular non-Hodgkin's lymphoma.  I am a 28 yr. old male, in otherwise good health and shape. 

I have a bit of a dilemma...after my surgeon gave me the diagnosis I scheduled consults with two different physicians.  They both concurred with the diagnosis but they each suggested a drastically different course of action.

The first Dr. suggested we start aggressive treatment right away and start looking towards a bone marrow transplant as the best option. The second doctor suggested that, because I have no symptoms that we should take a "watchful waiting" approach.

Both paths seem to have their pluses & minuses...has anyone been in a similar situation and is there some advice you can offer?

 

Shemay

I'm interested to learn about the alternative treatments you would share with Matymac.

Ron

radragin@hotmail.com

 

 

 

 

Hi, I to have follicular lymphoma was in stage four. But throughthe grace of God I went to stage 2-3.   I didnt have symptoms either. So we did the wait and see approach for one yr. Did have cat scans and Pet scans plus lab work after I was diagnosed.  But then I needed more aggressive approach. Due to tumors increasing in size. I have now gone through 5 chemotherapy and rituxan treaments. I have my last one next week. Was suppose to have 8 treatments. But Praise the Lord through prayer and the chemo. I dont need any further treatment after next week. Many of my tumros have resolved. And the ones left are what they call Shotty tumors. very small about 1 cm. So now I will be back to wait and see., But will continue with the rituxan therapy weekly.  Please consider all you options first.  And I do hope and pray that you and your physicians will agree on the best one for you. Keep in touch.carla

Hi Carla – thank you for your reply, it sounds like you’re an old pro at this…which means I’ll have lots of questions for you.

 

Did you ever consider a bone marrow transplant? One of the doctors I met with is pushing for us to go in that direction.  To be honest, I just don’t think its worth the risk at this stage, what do you think?

 

Also, while undergoing chemo, were you able to live a relatively normal life.  I’m concerned about not being able to work or be active like I am now…if I’m not keeping myself busy I’d go crazy.

 

Thanks for your input.

Hi ya, I would not consider a bone marrow unless last resort. But htat is my own opinion. Yes with the chemotherapy you should be able to lead almost a normal life. Like you are now. You may have some side effects. But they are usually minor. And for myself the worse part was the tiredness. But that just meant I had to rest some.  I still fish and hunted and did pretty much what I use to do before being diangnosed.  My faith helped me so very much. Plus my physicians were very informative and didnt want to rush anything.   At first I didnt have much of a option.  Then tired the Chop and riotuxan which helped decrease many of the tumors. But I also give God the glory and praise to.  I would really think about the bone marrow very hard. Esp. when you are syptom free. And if  you eat right and  all. You should be able to work etc. Hope this helps.  I am 55 yrs old and have been diagnosed for 2 yrs. Went one yr. without any treatment. Now I will be back to wait and watch. Good Luck my friend. Carla

I think these two options are in an attempt to acheive two different goals.  Watch-and-wait is a palliative approach, which is designed to allow you the longest and highest quality of life possible.  For the typical 60-year-old new NHL patient, that's a very common choice, since treatment can be quite disturbing to your lifestyle.

The bone marrow transplant sounds like a curative attempt.  That may or may not be a long shot, depending on the kind of NHL you have.

I would talk to your doctors again and ask what their goals are for your treatment.  At 28, choices look different.

Dave

I agree with Oncryx with only one difference.  If the Lymphoma is a Stage I or II after full w/u then there is a chance for long term cure with chemo and involved field Radiation.  The problem with the indolent lymphomas is they present as Stage III/IV most of the time.  If you have a more advance stage but are asymptomatic then watchful waiting is reasonable or if the tumors are large then treatment can be offered.  Given your age, although Bone Marrow transplant is usually later , they may be more aggressive with you.  This can be good and bad of course.

Hello:

I am reading, with great interest, all the posts on this topic. My Dad is 71 years young and has NH G1 Lymphoma, Stage 4. He has only done the "watch and wait" since diagnosis, five years ago. He recently had his annual CT scan (last week) and there has been some enlargement of the existing nodes. The largest two mentioned in the written CT report are measured at 2.4 x 3.0 cm and 2.2 x 3.7 cm. These are, I believe, in the lining of the abdomen. What does this mean? How large were yours when they finally decided to take action? Aside from tiring more easily, he has no symptoms.

My mother passed away from pancreatic cancer in February, so we are all on pins and needles worrying about Dad. As we all know, stress can play a major role in this and any disease. I would appreciate any feedback. Thanks!