Hi All

[Gerbil007]

I was diagnosed with stage 4 Non Hodgkins follicular lymphoma early 2014, at first i though i had a kidney infection and was being treated accordingly by my GP, after several visits to A&E and stronger pain relief each time i managed to get a scan, they told me 6 to 8 weeks for the results to come back, i went home quite dispondant thinking 6 to 8 weeks of pethadine and still being in pain.

I had been at home about 10 mins when the phone rang and the hospital told me to go straight back in they had found a large mass on the left side of my stomach, i was admitted to the Georgina ward where i had a lymph gland removed from under my right arm and result came back as NHFL.

The next few days and several gallons of tears i had my first of 6 R-Chop chemotherapys, followed by 12 maintenace sessions, the last 4 being sub cut.

i finished my maintenance in october but the fatigue is awfull, i try to busy myself but get tired very quickly, my wife has been an Angel through all of this and i do get short tempered which i then feel quite remorseful as im not normally like that.

I am now in the process of trying to finish work through ill health as my job is quite physically and mentally draining

best wishes to you all and keep fighting,

Paul

[R-16728]

GErbil007, stay positive. I went through similar problems back in 2008 and I'm still here and cherish every day. Take 'em one day at a time and try to focus on what each day accomplishes rather than trying to plan too far ahead.

[Gerbil007 in reply to R-16728]

Thank you R-16728

[Mitzie]

Hi, I was diagnosed Nov 2012 and went through the same treatment coming out the other end clear.

Everyone expects that once treatment has finished you should be ecstatic and jumping for joy, however this I found was not really the case. Tiredness and lethargy are still sometimes a problem, but I find that doing what you can when you can and trying not to worry that you should be doing more ( easier said than done!) works for me!

Getting your head round what has happened is difficult but keep plugging away and don't beat yourself up about things ...,I'm sure things will get better for you.

Best Wishes

[Gerbil007 in reply to Mitzie]

Thank you Mitzie,

[BelindaTupper in reply to Mitzie]

Mitze, I read your comments. Thanks for the encouraging words. I find it is hard to get my head around all thats happened. I find I don't want to be reminded (although I'm reminded every day). I'd rather it all stay a bit of a blur.

[wmay13241]

Here is a data point for you. My 69 year old wife has follicular lymphoma stage 4 grade 2. In 4 years she progressed through R-CHOP, BR, Ibrutinib, and Idelalisib/rituximab. In February 2016 she got a CAR-T infusion in an NIH clinical trial. She is now in complete remission and feeling great. Good luck my friend.

[Gerbil007 in reply to wmay13241]

I did see blood wise were doing clinical trials but was wondering if it might clash with my nhs treatment, really pleased for you and your wife, fingers crossed for your future

[Jackieyar in reply to wmay13241]

Did your wife have serious side effects to the Car T? I had serious allergic reaction to Rituximub.

[wmay13241 in reply to Jackieyar]

No serious side effects but she had follicular lymphoma with a low tumor burden. People with a different NHL type and high tumor burden often have serious side effects that typically occur after infusion at days 2-3 and 7-8. She does have low immunoglobulins that require an IVIG infusion about every 4 months. You can find current CAR-T clinical trials at clinicaltrials.gov. You can read about NHL, including CAR-T, at lymphomation.org/

[wmay13241 in reply to Jackieyar]

BTW the rigors is a known and common side effect that accompanies a patient's first first rituximab treatment. My wife had rigors during her first rituximab treatment. The doctor stopped the rituximab and gave her IV benedryl to make it stop. She returned the next day to complete her rituximab. This time the doctor started with a low flow rate and gradually increased it. This was the only time she had the rituximab rigors.

[Jackieyar in reply to wmay13241]

Thanks you for your reply. After the second attempt with pre treatments and antihistamines, the MD Anderson doctors agree that I am one of the few that is actually are allergic to the Rituxan. And my doctors are concerned about my tumor burden causing tumor lysis syndrome.

[wmay13241]

Thank you. In my wife's NIH trial she had to be off her current treatment at least 3 weeks before starting the CAR-T treatment.

[JeanL54]

Paul, I had NHFL. I was diagnosed in 2011, had a trial chemo of Benamustine and Rituximab. Started on the maintenance, but my blood was so low and I got a very serious infection and was hospitalized, so couldn't finish it (had 2 maintenance treatments). That is okay though as I feel I am healed through the power of God, along with my treatments. I feel great and there is no sign of it. It took about 3 years to feel somewhat normal again, but I am okay now. Keep looking on the bright side, and although it is supposedly incurable, it is quite manageable. There is a website called Lymphoma Survival that I subscribed to. Costs about $25.00 per year, but has lots of useful information on it. LymphomaSurvival.com and the man that runs it had lymphoma 28 years ago, his name is Robert Miller. I just cancelled my subscription this year, but it may be worth looking into. Stay positive! Best wishes.

[wmay13241 in reply to JeanL54]

Consider the free NHL web site at lymphomation.org/ It is run by a guy whose wife has follicular lymphoma. She took a radioimmunotherapy treatment (Zevlin I think) and has been in complete remission for 10 years.

[BelindaTupper]

Paul, your situation is somewhat similar to my experience except I thought I had the flu or pneumonia back in Nov. 2014. Chest X-rays showed fluid around my left lung and a return trip to the doctor sent me straight to the emergency room. I had more than a litre of fluid drained off (fun..they freeze your back and poke a hole in between your ribs into the plura cavity and drain it out) no fun. Within a few weeks I was in hospital for a biopsy and chemo the next month. It was a bit of a whirl wind. I'm on Rituxin maintenance treatment now. Fatigue is always with me. I've hired a personal trainer certified in cancer programs. I'm hoping she can create a program where I won't hurt myself. I'm working full time, too, but a desk job. My body hurts from sitting so much and when I exercise I hurt from that, too. Hoping to find some magic.