newly diagnosed with non hodgkins lymphoma

bk1950 · April 2009

have slow growing NHL in my abdomen. anyone else?

Kristine 9.9.99 · May 2009

NHL
Hi there bk1950!

Yes, I have had NHL in my abdomen. Also, my neck, my chest, my groin, my spleen, etc. I was diagnosed almost 10 years ago and have had CVP treatment. Currently, I am doing Rituxan every 3 months. Have you been staged yet? Have you had any treatments?

~K

MargaretDiann · May 2009

Kristine 9.9.99 said:
NHL
Hi there bk1950!

Yes, I have had NHL in my abdomen. Also, my neck, my chest, my groin, my spleen, etc. I was diagnosed almost 10 years ago and have had CVP treatment. Currently, I am doing Rituxan every 3 months. Have you been staged yet? Have you had any treatments?

~K

Rituxan for autoimmune issues & fatigue, too
I have heard that when there are multiple autoimmune issues and things like the fatigue of CFS, CFIDS, FM, that Rituxan helps all of them. I wonder why that is? I have also come to believe that the root cause of such cancers & Autoimmune Hemolytic Anemia is exposure to glycol ether family of chemicals.

bk1950 · May 2009

Kristine 9.9.99 said:
NHL
Hi there bk1950!

Yes, I have had NHL in my abdomen. Also, my neck, my chest, my groin, my spleen, etc. I was diagnosed almost 10 years ago and have had CVP treatment. Currently, I am doing Rituxan every 3 months. Have you been staged yet? Have you had any treatments?

~K

follicular lymphoma
thank you so much for responding. my PET scan did not show much change and my lymph node is now 6cm. my doctor says we will wait for 6 more weeks and have a scan to see where we are at and go from there. does that sound right to you and did you also have a waiting period? i am so glad to hear that you are doing well, it gives me hope. thank you

blueroses · May 2009

bk1950 said:
follicular lymphoma
thank you so much for responding. my PET scan did not show much change and my lymph node is now 6cm. my doctor says we will wait for 6 more weeks and have a scan to see where we are at and go from there. does that sound right to you and did you also have a waiting period? i am so glad to hear that you are doing well, it gives me hope. thank you

Go with your gut
Hello bk, I am a 20 year survivor of NHL and have been dubbed 'cured' after so long so that's the good news - cancer can indeed be cured - I am living proof. I do suffer from many long term side effects of treatments though that hold me back but I got to see my kids grow up to young adults and that was my goal. I had follicular too, can't remember the whole name of it but I remember the follicular part. If you feel that 6 more weeks is too long to wait talk to your doc about it til you are satisfied that you want to wait. I was diagnosed in 1989 and had one reoccurance in 1991 and at that time was told I could 1. wait and see 2. have the same chemo and rad treatment all over again 3. have a bone marrow transplant. I am not the 'wait and see' kind so that was out for me and since the first treatment didn't work why try that again so for me I opted for the BMT. I was young and healthy then and felt I needed that stamina for the transplant so I went with it. It was really rough and I nearly died of congestive heart failure but I made it.

Whenever I felt something wasn't right I made my feelings clear to the docs so do the same, if you feel you want to move ahead with treatment or are uncomfortable with what they want to do talk to them and if they don't want to talk find an oncologist who will work WITH you in your treatments.

All the best, you can do it, stay positive, stay strong. Blessings, Blueroses.

coachks · May 2009

nhl
two years ago I had a slow growing tumor in my large intestine(cecum) 4cm. 5 months of chemo and it was reduced to 2cm. I have been off chemo now for 15 mos. and my last pet scan indicated that it has grown to 3cm. Another test is scheduled in 3 mos. I have been told by my oncologist that we will just watch it until it shows aggression. I have had no other symptoms and other than the tumor I am feeling ok. What's up with that?

blueroses · May 2009

coachks said:
nhl
two years ago I had a slow growing tumor in my large intestine(cecum) 4cm. 5 months of chemo and it was reduced to 2cm. I have been off chemo now for 15 mos. and my last pet scan indicated that it has grown to 3cm. Another test is scheduled in 3 mos. I have been told by my oncologist that we will just watch it until it shows aggression. I have had no other symptoms and other than the tumor I am feeling ok. What's up with that?

Hi Coach
If you are asking 'what's up with that' that you are feeling well even though you have a growth in the tumor the answer is simple - cancer doesn't always come with any symptoms at all that can't be otherwise explained by just life - like tiredness. When I was diagnosed with NHL I had no symptoms except I felt quite tired alot of the time but then I just blamed it on my young, very active son and trying to keep up with him. I had no sickly feelings or anything and only realized something was wrong when a lymph node on my leg blew up to the size of an egg from nothing and I saw it. Cancer is often very silent as it grows.

Now that you have had it detected and the doctor will be watching it to compare the size of it in 3 month intervals or as he sees fit over time and in that way you will be able to decided your next course of action depending on how it does or doesnt grow and how quickly if it does - that will show aggression.

All the best of luck to you, keep positive. Blessings, Blueroses.

bad_kitty_catz · June 2009

blueroses said:
Hi Coach
If you are asking 'what's up with that' that you are feeling well even though you have a growth in the tumor the answer is simple - cancer doesn't always come with any symptoms at all that can't be otherwise explained by just life - like tiredness. When I was diagnosed with NHL I had no symptoms except I felt quite tired alot of the time but then I just blamed it on my young, very active son and trying to keep up with him. I had no sickly feelings or anything and only realized something was wrong when a lymph node on my leg blew up to the size of an egg from nothing and I saw it. Cancer is often very silent as it grows.

Now that you have had it detected and the doctor will be watching it to compare the size of it in 3 month intervals or as he sees fit over time and in that way you will be able to decided your next course of action depending on how it does or doesnt grow and how quickly if it does - that will show aggression.

All the best of luck to you, keep positive. Blessings, Blueroses.

hi
75% thru body.Tumor the size of basketball in tummy.Lymph node on right side taken out.Was a long process,misdiagnosd as not cancer so not treated right away.Very fast growing,which is the easy one to treat i hear.3 yr survivor here.No symptoms,can you imagine not knowing you have a tumor growing that big inside of you and have no clue?

KYPam · June 2009

NHL in abdomen
Hi,

I was diagnosed 5-1-08. NHL in neck, shoulder, arm pits, and abdomen.
Stage 3B, Grade 3. Had 3 rounds FND-R followed by Bexxar. Was told
after this, only step available is bone marrow transplant. Close to
remission, but not quite there. Go back to onc end of this month.
Bexxar is recirculating through my body giving me fits - severe
fatigue, mouth sores, and nausea. Oh well, at least I made my 1 year
anniversary. Feel very fortunate, just get frustrated with lack of
energy and all.

Best wishes,

Pam

survivor-twice · July 2009

blueroses said:
Go with your gut
Hello bk, I am a 20 year survivor of NHL and have been dubbed 'cured' after so long so that's the good news - cancer can indeed be cured - I am living proof. I do suffer from many long term side effects of treatments though that hold me back but I got to see my kids grow up to young adults and that was my goal. I had follicular too, can't remember the whole name of it but I remember the follicular part. If you feel that 6 more weeks is too long to wait talk to your doc about it til you are satisfied that you want to wait. I was diagnosed in 1989 and had one reoccurance in 1991 and at that time was told I could 1. wait and see 2. have the same chemo and rad treatment all over again 3. have a bone marrow transplant. I am not the 'wait and see' kind so that was out for me and since the first treatment didn't work why try that again so for me I opted for the BMT. I was young and healthy then and felt I needed that stamina for the transplant so I went with it. It was really rough and I nearly died of congestive heart failure but I made it.

Whenever I felt something wasn't right I made my feelings clear to the docs so do the same, if you feel you want to move ahead with treatment or are uncomfortable with what they want to do talk to them and if they don't want to talk find an oncologist who will work WITH you in your treatments.

All the best, you can do it, stay positive, stay strong. Blessings, Blueroses.

Survivor of successful BMT for NHL in 1992
I too am a survivor of NHL and a bone marrow transplant in 1992. I was diagnosed in 1985 and told there was no cure. I researched a great deal and learned about the BMT. I was actually my own donor. I went to Fred Hutchinson Cancer Center in Seattle. They were pioneers in Bone Marrow Transplants. I went when I was well and strong and I think that is what saved my life. Had I waited until I had received a lot of chemo and radiation my body would not have been able to handle the trauma of a BMT. My doctors never told me about the transplant and really didn't want me to have that drastic a treatment; but I just wanted to get rid of it once and for all if it would save my life - and it did. Be optimistic, don't let yourself be stressed and become selfish. I think major emotional stress is what caused my cancer to begin with. It's YOUR life!!!!

Louise53 · August 2009

Newly diagnosed with non hodgkins lymphoma
bk1950
I also have indolent NHL in my abdomen. What treatment are you getting?
Louise53

newly diagnosed with non hodgkins lymphoma

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