Newly diagnosed low grade follicular lymphoma

buckeyedaveh · New User Joined: 02 Jul 2008 Posts: 5

Hi all. I am a newly dx low grade follicular lymphoma person. After freaking out, I have decided to accept that I have this condition, but it does not have me. I am not experiencing any B symptoms and have been told by one oncologist we will probably do the wait and see approach. {link deleted by admin}

Age - 36
Age of DX - 36 (July 3, 2008)
low grade follicular lymphoma
Stage: unknown at this time
Grade: Low grade
B symptoms: none
Treatment: Unknown at this time

Thanks for everyone who can offer some information.
_________________
DX: Follicular NHL
DX Date: July 3, 2008
Stage: IV
Grade: Low Grade (1)
Some Bone Marrow Involvement.

buckeyedaveh · New User Joined: 02 Jul 2008 Posts: 5

Sorry... didn't realize I couldn't put a link in a post yet. You can google Lymphoma Survivor and this guy is talking about 20 years of no symptoms, but he is asking for $35 donation. Just wondering if anyone was getting his articles. They seem to be full of information, but wasn't wanting to get bad information.
_________________
DX: Follicular NHL
DX Date: July 3, 2008
Stage: IV
Grade: Low Grade (1)
Some Bone Marrow Involvement.

Corvette · Regular Joined: 13 Nov 2007 Posts: 29 Location: North GA

My Dx was about the same as yours. I went through transplant as posted at the top of this thread. It is hard to find positive information about our cancer. I used to look for that magic remedy but all you will end up doing is giving money away. My advice is listen to your Doc and try to stay physically and mentally healthy. I take a few extra vitamins which probably does nothing for me but it gives me something to focus on. I also stay physically active by taking walks. Do what the Doc says but if you question him get a second opinion.

Also, my doc said I may have had my cancer for several years before it was discovered. If I would have fought it at an earlier stage it might have been a bit easier to deal with. I personally don't like the watch and wait idea but that is between you and your Oncologist.

Take care and good luck and keep us posted.
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for almost two and a half years!

ChemoMan

hello All

It is not uncommon for people to survive for up to 30 years without symptoms and no treatment at all, so I would save yourself 35 dollars Smile

. It is also not uncommon for people to have treatment off and on for this for decades. There is also no consensus on the type of treatment either. The mortality rate for transplants is a bit high for it to be used as first line treatment, but on the upside it can effect a cure. Watch and wait is a common approach with Chemo being used to put the lymphoma on hold if it starts to progress, and it works well. It will probably return but it remains responsive to the treatments, which is usually CHOP. As I mentioned before this can go on for decades. If by some chance it morphs into an aggressive Lymphoma, then the real possibility exists that it can be successfully treated.

Its nice to see so many of you all supporting each other:) Good luck to you all Smile

_________________
Age 51
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008

buckeyedaveh · New User Joined: 02 Jul 2008 Posts: 5

Hey all thanks for the responses. I had my BMB and full body CT scan on Wednesday. My Onc called to confirm there is bone marrow involvement, however my blood work is perfect. Just thought I would update everyone on my stage etc.
_________________
DX: Follicular NHL
DX Date: July 3, 2008
Stage: IV
Grade: Low Grade (1)
Some Bone Marrow Involvement.

Corvette · Regular Joined: 13 Nov 2007 Posts: 29 Location: North GA

I'm a bit curious at what you do for a living or what you think may have triggered your cancer.

I was in the Air Force and worked around microwaves and later in textiles working with dyes and chemicals. I also became became very depressed with my job as I was putting in 75 to 90 hrs per week with night time call-ins. I think my depression and lack of sleep triggered an immune deficiency.
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for almost two and a half years!

buckeyedaveh · New User Joined: 02 Jul 2008 Posts: 5

Corvette,

I am not certain anything triggered my cancer. I believe that I am one of the anomolies that is genetically linked. My mom died in 2001 of NHL, and I am finding that I have 2 great uncles and a great cousin that have all died of it (many years ago). As for my job, I am a project manager and work out of my house. I have always had a desk job working with computers. I do wish I could give a better answer than that.

I have had two opinions regarding my dx. One is conservative and wants Wait and Watch, the other is more aggressive and wants to do MAB (no chemo) and has talked BMT. I have read your story, but am curious to know more. If you had to to do it over again, would you have still done it? Also, are you still taking medications for GVHD or did you ever have it? How long did it take you to get back up and functioning?
_________________
DX: Follicular NHL
DX Date: July 3, 2008
Stage: IV
Grade: Low Grade (1)
Some Bone Marrow Involvement.

Corvette · Regular Joined: 13 Nov 2007 Posts: 29 Location: North GA

I used my own stem cells which is called an Autologous stem cell transplant therefore I don't have an issue with GVHD. Also, the mortality rate is very good. Possible <2%. The Allogeneic stem cell transplants refer to stem cells that are taken from one person and given to another and has a much higher mortality rate. Sometimes the cure is as bad as the disease. My chemo quit working for me so I had to get the transplant. I made several friends at Vanderbilt U that were going through a allogeneic stem cell transplant and doing very well. I think the key to making it through a transplant is being young and healthy. There were some that continued to smoke and do things that were absolutely a no no. These type of people will have a difficult time of it.

Would I do it again, heck yes! No kidding, some of this experience at Vanderbilt was enjoyable. I laughed alot, met interesting people and was treated great.

If you have bone marrow involvement I doubt if a wait and watch option will be recommended but I really don't know.
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for almost two and a half years!

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