Living a Different Life but with Grat... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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Living a Different Life but with Gratitude

PositiveLiving profile image

Hi,

My name is Debra and I have been diagnosed with Non Hodgkin's Lymphoma. I did 1 year and 3 months of wait and see, 6 months of intensive chemo and I am finishing up in February my two years of maintenance chemotherapy. I have been in remission for a year and 3 months now but I have to tell you it has been a wake up call with many blessings and awakenings during this journey.

I look forward to hearing your stories to better educate myself and to know the struggles you are all facing that I have or will. It is good to know I am not alone in this.

I think the important thing for me has been the support of family and friends, staying positive and taking one day at a time. I find that I am a woman of gratitude which makes every day enjoyable.

Thank you for accepting me into this group.

29 Replies

Sorry, I forgot to say that I am new on this site. Debra

Welcome to the group Debra. In November 2011 my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. In 3 years she progressed after R-CHOP, bendamustine/rituximab, and Ibrutinib. She took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial and has been in complete remission for 9 months. Current clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

R-16728 profile image
R-16728 in reply to wmay13241

I'd like to know more about the NIH CAR-T trial. Does it require daily medication? What is considered "complete remission? I have "complete remission" as long as I continue to take my meds, but if I stop, I would expect the cancer to take over again.

wmay13241 profile image
wmay13241 in reply to R-16728

You can read about my wife's CAR-T clinical trial at clinicaltrials.gov then search for NCT02659943. Pay particular attention to all the Inclusion and Exclusion criteria. Also search for CAR-T trials - many institutions offer CAR-T for many different types of blood cancers. You can read more about CAR-T at lymphomation.org/programing...

What good news for your wife and yourself! A lot of trials and tribulations but it changes us not to sweat the small stuff in life.

Shar0n profile image
Shar0nVolunteer

Hello Debra. I am in year two of watch and wait. I had surgery to remove and biopsy the first node and have one remaining node which my oncologist is watching as it has slightly increased in size recently. There are no easy answers with this illness and everyone's path seems to be different. I found that educating myself while a little scary at times was very helpful in reducing my stress. There is a wonderful site called Lymphoma Survival by a patient who has gathered research for many years and has had chemotherapy himself. He has lifestyle recommendations based on solid scientific research which I found useful and which my doctor has no argument with. The site is not free but the subscription is small. That helped me but others find other ways of staying healthy which are equally good. I swim and walk a lot and eat better than I ever have and all these things help, though not cure. Staying positive is essential. Wishing you continued good health.

Josie2rulrs profile image
Josie2rulrs in reply to Shar0n

can you please give me that site...

This is a very unusual disease. almost tricky, I appreciate this site

Shar0n profile image
Shar0nVolunteer in reply to Josie2rulrs

The site is lymphomasurvival.com run by a gentleman called Robert Miller who has lived with follicular lymphoma for many years and has had treatment in the past . Yes it is an unusual and tricky disease, that's for sure.

Josie2rulrs profile image
Josie2rulrs in reply to Shar0n

thank you

Teddy811 profile image
Teddy811 in reply to Shar0n

Thank you for posting this site! I found it to be wonderful and spot on. Robert has been a 29 year survivor and I am now 35 years in survival. I was not treated until this year. Everything he talks about is what I did to stay healthy for 35years. I followed my gut instincts and it worked. He has now backed that up with research and it will help so many other people. I truly hope that everyone on here with FNHL gives themselves the gift of subscribing to his site.

Shar0n profile image
Shar0nVolunteer in reply to Teddy811

hi Teddy - its so encouraging to hear your experience especially for those of us at the beginning of the journey with FNHL. I was quite shocked when I was diagnosed and I credit Robert Miller with giving me direction and hope. I follow his guidelines as regards lifestyle and diet and I feel fitter than 30 years ago and even though I have my down days I'm mostly energetic and hopeful. Long may your remission continue!

luciabon profile image
luciabon in reply to Teddy811

Who is Robert? I want to do everything you two did!!!

Teddy811 profile image
Teddy811 in reply to luciabon

Luciabon the site is : lymphomasurvival.com

Hi SharOn, I was stage 4 bone marrow and I don't know the rest of the details like you folks do but feel lucky to be doing so well. I do listen to my body and rest when I feel tired. I try to eat healthy and walk but it is not easy when you are so tired from chemo. I hope after my last maintenance chemo in February some of the tiredness will wear off and I can get more house work done. I do two loads of laundry and my dishes and I am done for the day. I was non stop before this cancer hit me so it has been a major adjustment but it isn't so bad being a bit more grounded although I miss travelling like I used too.

Shar0n profile image
Shar0nVolunteer in reply to PositiveLiving

I think the message we all have to take on board is to look after ourselves as we would take care of a loved one. We can only keep going if we do that.

Thank you for sharing! Yes, it does seem like we are all on our own journey with something a little different but don't forget - we are all in this together. Thank you for the information, I have checked it out and I found it useful.

I am so happy that you are doing well. After watch and wait, did you lymphoma come back?

what stage and grade were you at. I am at watch and wait for about 1 1/2 years now. its great to have this group to bounce ideas off of.

I never had any growths but was anemic, iron was so low the doctor didn't know how I got out of bed every day, and my hemoglobin was also extremely low. My iron and hemoglobin is back to normal but I am still tired and have to pace myself. I have been in remission for a year and 4 months now while still doing the maintenance chemo. I am so thankful I will be done in February so I can have a bit of a more normal life. 2 and 1/2 years of chemo is enough for now so now it will be to treat my body with respect and hope this remission sticks for a long, long time!

A very very long time.....

I had a year and a half of wait & see until my symptoms escalated - shortness of breath, night sweats so bad I would change 5 times during the night and a few more that I forget what they were. Wait and see is a good thing because it means you are managing your illness well. I am lucky I have some nurse friends that came to chemo and helped me with what was normal and what wasn't with this situation.

its a trick disease isn't it....

We all hope for the best.

Hi there my name is Sonja 57, diagnosed with NHL in April 2016 have had 6 months of chemo and am now waiting for my stem cell transplant in Jan 2017, hoping it will give me a lot Moreno years x

laylalulu profile image
laylalulu in reply to love2love

Prayers for healing for you Sonja!

Hi Debra, I have my 2 year check up in Feb. I have splenic marginal zone NHL. I read you were watch and wait also for awhile. How did your symptoms show up for reoccurrence? I feel like I'm watching and waiting for any little sign of reoccurrence these days. Not getting all hung up on it, just a little anxious. Hope you are doing well, I too feel gratitude for 2 years of being able to spend time with my grandkids and husband, hoping for many more! Every day is a blessing.

Debra...why did the Dr s wsit and see? If they knew what you had. ...

Hi Sandy, Apparently, it is normal procedure to wait and see unless your symptoms escalate. You can be on wait and see for a few years or life. My symptoms escalated so I have done 6 months of intensive chemo and am finishing up my two years of maintenance chemo next month in February. I have been in remission a year but am looking forward to some of these chemicals coming out of the body after about 5 months after the last chemo. I still feel tired and not normal energy. I have been told it is a new normal and we have to live life accordingly now with Non Hodgkin's Lymphoma.

Debra, so glad to hear you are doing well and have been able to find blessings along your journey. I, too, have gained many blessings through my NHL journey. I was diagnosed in 2015 and had 6 months of chemo and have 2 maintenance treatments to go. Gaining strength every day. I've been back to work for the past year. It's good to be well enough to work. I live more "in the moment" than I ever thought I would. My family has told me I'm healthier, for having cancer, as strange as that is. I feel blessed.

Welcome, Debra! Staying positive has been my saving grace as well. Being mindful, and giving myself and others room to be human has been a blessing that I doubt I would have experienced without the cancer diagnosis. It feels really odd to say that, but it's true.

I'm glad you are staying positive in your journey as well.

I love this! We are so much alike! Thanks for sharing your story!

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