The one thing I have noticed as I have searched many web sites and support groups many of the people who have received standard treatment for non-hodgkins are on their second or third round of treatments. It would be really nice to hear stories from survivors that have 3or more years of remission behind them. It would be very encouraging.
I too wish someone would reply to your post.. I want to hear their story.. need the facts and encouragement.. I am in Remission now, but just happened,,
That is wonderful! Amen
My wife had NHL 3 (or more maybe?) years ago, diagnosed 6 months after the birth of our first baby, was then treated with chemo+rituximab, and then a year of rituximab every 3 months from her first chemo session. She is getting blood tests every few months now, and since (touch wood), it hasn't come back.
She was treated in Australia.
In the middle of all the above, she had TB treatment too, which appeared I'd imagine because of the low immune system during the chemo and baby, and the work that comes with it all.
Right after the rituximab had finished and we had the all clear, we'd gone for a second baby. And behold he came 9 months later, healthy as can be. He's turning 1 next month.
So there is a good story for you, we hardly talk about it now, and have always treated it as if its not as serious as it possibly could have been. I honestly don't know how my wife managed to live through it, a baby, TB, and me! She is pretty amazing.
Thank you for your story, and praise GOD. I hope & pray that everything continues to go well for you all…
I was wondering what kind of cancer she had? Mine is Follicular, Lymphona.
Thank You
Hi, your welcome,
Yes, it is follicular lymphoma diffuse b-cell non hodgkins.
Not three years yet, but...I was diagnosed with DLBCL in November 2009 in Palmerston North. After 11 chemos (4 X R-CHOP; 2 X R-ICE; 5 X DHAP), I was told that there was little more that could be done by way of a curative approach in NZ. I am now an outpatient in the USA on an experimental clinical trial at the National Institutes of Health in Bethesda, Maryland. The experimental drug I am taking is a targeted therapy, a small molecule that interferes with an intra cellular pathway. It is not a chemo, so there are no side effects. The good news is that after 13 weeks, it is working so far. I am healthy, working, and recovered from most of my chemo side effects.
The targeted therapy I am receiving is specifically designed for patients with the activated (ABC) subtype of DLBCL. This subtype does not always respond to chemo. I would be happy to communicate with anyone with ABC subtype who has failed treatment or relapsed to discuss this trial as an option. I can help them communicate with the investigators. The treatment is free and the trial will pay for travel within the US from your residence. Here is a link to the trial description: http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01177878
That is awesome. I really don’t know the subtype but I do have DLBC. Please send me more info. I am a little leary of posting e-mail. I have just had the first treatment but I want to be prepared. Thank you Lori
Hi,
I've had follicular NHL for 18 years. I had radiotherapy in 1992 and 2001. Since then tumors came and went all of their own accord on a program of watch and wait. This year the tumors didn't go but grew aggressively so I had 6 x r-chop. I noticed the "surface" tumors shrank after the first treatment and the scan after the fourth treatment was clear.
Let me know if you want more detail.
Best wishes,
Richard
Thank you. It is inspiring to hear from all of you. Please keep them coming. Blessings Lori
I was diagnosed with NHL Stage IV, Type E, Small B Cell of the central nervous system in April 2005. There was no lymph node involvement. After a spinal tumor biopsy, I was treated with 6 X CHOP-R. I went into remission within 5 months, and I have been in remission for 5 years now. I am no longer in a wheel chair and am leading a normal life.
My 27 year old daughter was diagnosed with Non-Hodgkins Lymphoma the Day after Christmas 2008, transfered directly to Mayo in Rochester where she remained for treatment thru May 2009...was on dialysis 12 days and very very sick and in late stages of the disease as she had delivered her baby girl in late November 2008 and Dr.s' had told us her symptoms were masked by her pregnancy....her symptoms were severe with tumors thruout....Mayo was absolutely excellent in her care....she underwent much and various chemotherapy and bone marrow transplant...today it would be impossible to look at her and realize she was so sick and she finally had a beautiful wedding this past June with her baby and 5 year old walking down the aisle in front of her and a huge smile on her face.....we as parents and she, I'm sure, never thought while going thru this, would see such a happy day. Dr's at Mayo always told us they planned to cure her, not treat her and thru their excellent skills and many prayers, we Believe that she will continue to have her life back. The treatments she underwent was truly difficult and horrible but the result is a happy, healthy life and those months of being sick and miserable faded quickly. Life moves forward.
Is retuxin always used after Large B Cell Diffuse Lymphoma? My doc. says it isn't as effective as they once thought and I will not be followed with retuxin. I am so concerned as i see all these posts of how wonderful it is??????? Can someone claify??
I was diagnosed with "AngioImmunoblastic-like" Peripheral T-Cell Lymphoma Not Otherwise Specified (an unknown sub-type) in July, 2008. I had "innumerable" tumors in my lymphatic system and disease in my bone marrow. I had "B" symptoms, which lower the already poor prognosis even further. At that point, I had about 12 weeks to live if it did not respond to treatment, and there is no standard treatment for this rare and aggressive T-Cell lymphoma. I was given four dose-intensive cycles of CHOEP followed immediately by four cycles of GND. The PET/CT scans were clear halfway through treatment, but I immediately relapsed, which dropped my prognosis to "very poor." There was nothing left but one massive in-patient infusion of ICE and palliative care > hospice. Providentially, a clinical trial of an experimental drug (Romidepsin/Istodax) appeared. I entered the trial and went into full response. Yesterday, I just completed cycle 52 of the drug in the long-term study of it. I have almost 5 years into this journey and am about one month shy of 4 years in remission. So, there is much hope. Yet, I credit a merciful God and the many prayers that ascended on my behalf for my continued presence on earth.
PO, congrats on completing cycle 52! yours is an amazing and truly inspirational journey. Thank you for sharing it and being there for us all,
Hugs, kb
Congratulations and thanks for sharing! I would look into trials if this stuff DCBL Type A ever decides to rear its ugly head. Thanks and Hugs.
I was dx'd summer of 2007 with Follicular NHL, B type, large cell, stage IV. Save for the golf ball size lump under my chin, I would not have known it.
By late Autumn 2007, after the PETs and biopsy, I started R-CHOP (without the vinchristine?) still not sure.
NEVER was told I was in remission- found out through a denied application for SS Disability that I was in "regression".
After several years, I asked my Onc what "regression" was... "never heard of it" but, I was in REMISSION since end of chemo in 2008! I never knew. Wasted life in worry.
Turns out I was cancer free 5 years by the time I found out!
Currently have the next "% year Plan" in process!
I'm still tired, but now allow myself to honor my body and rest -guilt free.
Seems like the nodes wax and wane so I've learned not to react in panic and "warn" the family that nodes are enlarging.
My biggest fear is catching a cold - which I'm currently getting over one (I hope). That's how I found out initially that I had NHL: had a cold in January, so did my husband. He got better- I got cancer. By that July, it was "time" to get serious and figure out what this lump was. I was trying to tell myself that it was an infected salivary glad, possibly with a stone in it- but I knew better- I had no pain.
I had lost weight, but had also started drinking sugar-free beverages... tired- but was previously dx'd with fibromyalgia...also, my legs were very painful, but with fibro and injuries and surgery, it seemed normal for me.
Go figure! Wasn't 'til I got home from the ENT doc that I read the pamphlets he handed -upside down mind you- when I left his ofc.
They were titled "Head and Neck Cancer" and another I can't remember. That's HOW I was told they suspected CA!
Aaaarrrrgh!
Today? Still working on my second 5 year plan and doing MUCH better with it!
I wish the same for you!
Rob
Rob, can you clear something up for me I can’t seem to get a straight answer from my onco or maybe I am asking it wrong? I was diagnosed with DLBC and follicular stage 4 2 yrs ago. Thank God that I cleared but I am confused. They say the follicular never goes away and that it is a watch and wait, does that mean that when I had the chemo it only affected the DLBC but didn’t get rid of the follicular? Or does it mean I will always still have the follicular? I hope you understand what I am trying to say. Thank You.
My heart goes out to all of you and your families that are facing this challenge. If I may, I'd like to share.
Year 2000 I was diagnosed with Peripheral T Cell NHL, stage 4B with bone marrow involvement. They said less than six months of life left if I did not respond to treatment.
The discovery process was incredibly frustrating as doctors, friends and family thought I was imagining my symptoms. At one time I told my GP that I felt like I was "rotting" away from the inside out....lol he prescribed me anti depressants.
After three miscarriages and several "infections" I requested a hysterectomy where they discovered in my liquefied uterus and the advanced cancer. 6 rounds of CHOP and I have been blessed with 13 years.
Mild long term side effects have been very manageable. I have had the honor of raising my two beautiful children.
Although I may be facing a relapse, thirteen years is a far cry from the initial 6 month prognosis. God willing, if I have relapsed, I'll be blessed again.
Cancer is not a death sentence...it is a reminder that we are alive!
At the risk of repeating myself, I might be your twin! We had the same Group of cancer (PTCL-NOS). And it sounds like you had my same primary doctor! I had been expecting cancer, since 60% of my dad’s side had expired to it. In 2008, at 55, I found a node behind one ear and went straight to the doctor a (new doctor, as mine had just retired). I got antibiotics and waiting. Went back with B symptoms and asked to be tested for mononucleosis, as it felt just like it. More tests and waiting. Yes, I had mono. Well, between doctor and I, only one of us knew that my immune system had failed. By now, several nodes were visibly protruding from my neck. I was given anti-anxiety meds (still have them). I went on my own to my ENT, who wanted a node out, but could not do it for two weeks. Went from there to an independent surgeon who took one out. He told me to run for my life if a doctor ever said the word “wait” to me. Went to oncologist who took bone marrow. Path report said only “abnormal cells” and doctor wanted to “wait.” We ran. Went to Fred Hutchinson, where I was diagnosed with “AngioImmunoblastic-like” Peripheral T-Cell Lymphoma - Not Otherwise Specified (unknown sub-type). I had “innumerable” nodes and bone marrow involvement. As you know, it has a poor prognosis and I had about 12 weeks to live. Had four months of dose intensive CHOEP + GND and It immediately relapsed. Prognosis dropped to very poor. No stem cell donor available. Now there was basically hospice. A clinical trial of Romidepsin (Istodax) appeared. Entered the trial and have just completed 4 years on the drug. Almost 4 in remission.
It is amazing that you responded so well to CHOP, as it has a terrible record against T-Cell Lymphomas. I pray that you do not, but if you relapse, there are at least three new drugs that might be used, and an exciting new pill-form drug is in trial. And 13 years! I have always planned on having 6 more months (if that). Great to hear such an inspiring story as yours. All the best,
Jim