Lymphoma folicular non hodgins stage 4

Adena1
Adena1 Member Posts: 2
6 chemo treatments has reduced by 50%. Also have Hereditary Angioedemia, which is an autoimune disease. Any info

Comments

  • JoanieP
    JoanieP Member Posts: 573
    also folicular
    Adena, I also had NHL (follicular) Sorry I do not know anything about autoimune as it reacts with lymphoma. Hope you have found answers and you are doing o.k. I am 62 and was told follicullar is very common in 60 year olds. God bless you
  • Bsmom1971
    Bsmom1971 Member Posts: 5
    JoanieP said:

    also folicular
    Adena, I also had NHL (follicular) Sorry I do not know anything about autoimune as it reacts with lymphoma. Hope you have found answers and you are doing o.k. I am 62 and was told follicullar is very common in 60 year olds. God bless you

    Follicular NHL in lung
    I was recently diagnosed with FNHL in my rt. lung. Since the tumor was so low and close too my heart, a biopsy was unsuccessful; I ended up having my lower lobe and lymph node removed to diagnose the FNHL, in Stage 4, A cell and will be starting Chemo in another week to hopefully keep it from returning!

    I was told to have it in the lungs is very very rare, like a 1% chance; yet my Brother and Mom both had lung tumors, both undiagnosed as they died within 90 days of thier tumors being found! So, I'm beginning to wonder if we have/had the same cancer/lymphoma; I am very blessed that I had the forthright to push my Dr. to do surgery and remove my tumor.

    I was told I'll be having Chemo every 3 wks, for 6 mos.; I'll be ill; I'll lose my hair and I'll be fine; But, It could always come back! I am a 61 yr old female and was told the longer I live, the more likely this will return! I do not want it back, so I'm hoping the Chemo will stop it from happeniing for a long long time!

    I have Primary Immune disease/PIDD and have been taking IVIGs for several years, due to the fact that lymphoma is partially an Autoimmune disease (?) and I've been taking treatments to combat PIDD, is there a preventive? I doubt it!

    But I'm rambling so I will close for now; Take care Everyone and know We're all in God's Hands!

    ps: If God is your Co-Pilot, change seats! ;-)
  • catwink22
    catwink22 Member Posts: 281
    Bsmom1971 said:

    Follicular NHL in lung
    I was recently diagnosed with FNHL in my rt. lung. Since the tumor was so low and close too my heart, a biopsy was unsuccessful; I ended up having my lower lobe and lymph node removed to diagnose the FNHL, in Stage 4, A cell and will be starting Chemo in another week to hopefully keep it from returning!

    I was told to have it in the lungs is very very rare, like a 1% chance; yet my Brother and Mom both had lung tumors, both undiagnosed as they died within 90 days of thier tumors being found! So, I'm beginning to wonder if we have/had the same cancer/lymphoma; I am very blessed that I had the forthright to push my Dr. to do surgery and remove my tumor.

    I was told I'll be having Chemo every 3 wks, for 6 mos.; I'll be ill; I'll lose my hair and I'll be fine; But, It could always come back! I am a 61 yr old female and was told the longer I live, the more likely this will return! I do not want it back, so I'm hoping the Chemo will stop it from happeniing for a long long time!

    I have Primary Immune disease/PIDD and have been taking IVIGs for several years, due to the fact that lymphoma is partially an Autoimmune disease (?) and I've been taking treatments to combat PIDD, is there a preventive? I doubt it!

    But I'm rambling so I will close for now; Take care Everyone and know We're all in God's Hands!

    ps: If God is your Co-Pilot, change seats! ;-)

    Autoimmune
    Hi,
    I'm sorry to hear of your rare diagnosis, but kudos to you for having the mind and courage to follow your own instinct!

    I am stage 3 FNHL and I have a LOT of autoimmune disease in my family. My brother has Crohn's, my grandmother has polymyositis and my niece has Still's. These were not easy to get diagnosed, a lot of doctors (and years for a correct diagnosis in my niece's case).

    If you don't mind sharing, I am curious as to how you were diagnosed with PIDD? And was the lymphoma diagnosed because of your PIDD? I'm apologize if I am prying too much, I have not heard that there is a connection with an autoimmune issue.

    Good Luck with your Chemo, there are many success stories right here on this website, and we will just add you to the list!

    ps: I changed my seat
  • JoanieP
    JoanieP Member Posts: 573
    Bsmom1971 said:

    Follicular NHL in lung
    I was recently diagnosed with FNHL in my rt. lung. Since the tumor was so low and close too my heart, a biopsy was unsuccessful; I ended up having my lower lobe and lymph node removed to diagnose the FNHL, in Stage 4, A cell and will be starting Chemo in another week to hopefully keep it from returning!

    I was told to have it in the lungs is very very rare, like a 1% chance; yet my Brother and Mom both had lung tumors, both undiagnosed as they died within 90 days of thier tumors being found! So, I'm beginning to wonder if we have/had the same cancer/lymphoma; I am very blessed that I had the forthright to push my Dr. to do surgery and remove my tumor.

    I was told I'll be having Chemo every 3 wks, for 6 mos.; I'll be ill; I'll lose my hair and I'll be fine; But, It could always come back! I am a 61 yr old female and was told the longer I live, the more likely this will return! I do not want it back, so I'm hoping the Chemo will stop it from happeniing for a long long time!

    I have Primary Immune disease/PIDD and have been taking IVIGs for several years, due to the fact that lymphoma is partially an Autoimmune disease (?) and I've been taking treatments to combat PIDD, is there a preventive? I doubt it!

    But I'm rambling so I will close for now; Take care Everyone and know We're all in God's Hands!

    ps: If God is your Co-Pilot, change seats! ;-)

    God is my pilot
    HI
    I am 62 and got FNHL in jan 2009. I have been cancer free since June 2009. I hope you will find the CHOP pretty o.k. I also had 6 rounds. There is so much out there in the way of treatment for us. Yes it could come back , but we have to deal with that when it comes with God's strength, not ours. If you need to talk I'm available. Joanie
  • Bsmom1971
    Bsmom1971 Member Posts: 5
    catwink22 said:

    Autoimmune
    Hi,
    I'm sorry to hear of your rare diagnosis, but kudos to you for having the mind and courage to follow your own instinct!

    I am stage 3 FNHL and I have a LOT of autoimmune disease in my family. My brother has Crohn's, my grandmother has polymyositis and my niece has Still's. These were not easy to get diagnosed, a lot of doctors (and years for a correct diagnosis in my niece's case).

    If you don't mind sharing, I am curious as to how you were diagnosed with PIDD? And was the lymphoma diagnosed because of your PIDD? I'm apologize if I am prying too much, I have not heard that there is a connection with an autoimmune issue.

    Good Luck with your Chemo, there are many success stories right here on this website, and we will just add you to the list!

    ps: I changed my seat

    Autoimmune and FNHL
    catwink22 {I grinned at you "changing your seat} I love that!

    Hello too all,

    I have had PIDD for many years and been taking IVIG for approx. 12 yrs...I was constatly in the hosp. with brochitis, pneumonia, and other lung infections; Was sent too a Autoimmune Specialist and he diagnosed my PIDD through blood tests, lung functions, etc.

    The FNHL was diagnosed after having a yr. of lung infections that just wouldn't go away. Had a C-scan done and there was a spot that showed, 6 mos. later another C-scan and the spot had changed quite a bit, so a biopsy was scheduled & unsuccessful. So I chose to have the lung surgery rather than wait for another C-scan every 3 mos. for a yr. to see if "it" changes!

    Yes, FNHL is common among 60+ yr. olds, as it normally shows in in the Lymph Nodes, Brain and Liver, from what I was told by the Dr. The Surgeon was quite adamant about that...tho I have been reading about others having it in their lungs also...but as I said, it's a 1% chance and we're all a part of that percentage, I guess!

    We also have other autoimmune problems in our family...but I'm the only one that's been diagnosed and on a IVIG treatment...the others are on treatment for their specific Kidney disease, Crohn's, Liver, Lung, etc. problems...I have tried to educate them by sending them IVIG sites and show them there is a light at the end of the tunnel for some...

    Appreciate all the notes/comments and I don't get on her much but I do so much enjoy all the postings! Gives me somewhere to go once in awhile and know; Someone else knows how I feel!

    Thanks!


    p.s. If God Is Your Co-Pilot, Change Seats
  • Bsmom1971
    Bsmom1971 Member Posts: 5
    Thanks Everyone!
    I had my first Chemo yesterday, got my Neulasta shot today, 100 mg. of prednisone has my sugar levels in the 300's and I'm not sleeping well due to that, nausia, aches and pains but this too shall pass!

    I was told yesterday that the pathology report was back and I will also have to have radiation on top of my Chemo treatment. At least that will also be behind me.

    I understand that lymphoma is common in 60+ yrs. old...what I was saying is, it is rare to find it in the lungs, it normally is found in other parts of the body, less than 1percent is in the lung, my mistake for not spelling that out clearer before ;-)

    Take care Everyone and Thanks again for the notes!