New today to your group...

[DottiWF]

I was diagnosed 2012 with stg-4 fNHL, r-chop followed by 1yr rituxan as maintenance treatment, but relapsed during treatment in 2014, so 12-rounds chemo within 2yr and now "watch-n-wait" ideally keeping my immune health positive. I find myself "stuck" sometimes, almost waiting to the next relapse, sadly this mental state holds me back from progressing with my life. Anyone else feel "stuck", waiting for the next disease attack?

I also suffered 6-mos of leg and arm itchy nodes with no conclusive diagnosis, I believe all related to the chemo and the skin trying to cleanses itself- anyone else get skin rashes or complications months after aggressive chemo?

[wmay13241]

Hi DottiWF

In November 2011 my wife was diagnosed with follicular lymphoma Stage 2, Grade 3A. She had 50% bone marrow involvement. In 3 years she progressed after R-CHOP, bendamustine/rituximab, and Ibrutinib. She had Idelalisib/rituximab took 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 8 months. Current clinical trial data shows that once they achieve a complete remission a large number of CAR-T patients stay in complete remission. Good luck.

William

[Robin-Newman in reply to wmay13241]

I was treated with the same chemo treatment .

I was diagnosed 2010. Doing great.

[Josie2rulrs]

Good luck...see a nutritionist, take supplements lots of greens.

good luck/

I try to change my thinking when I get frightened...usually when I come to my watch and wait apt every three months.

[maria50ec]

If you feel stuck, perhaps counselling might help you move on? There are trained cancer counsellors avaialable through hospitals and hospices. Or learning mindfulness, often free via local Medical Centres.

Are you in UK? You might like to try duncansunctions.com , something our local support group The Living Tree has come across. you may also have local therapists and medical herbalists that make up specific balms for yu to try.

[Robin-Newman]

I can identify with feeling stuck. Diagnosed 2010. Even in remission you are never the same.

[ntbusby]

Hi DottiWF. I can relate to your feeling of being stuck. Sometimes I get worried when i get any pain that a tumor is growing again. I try not to let my mind wander. I am 10 months cancer free now from Burkitt's NHL which is a type of Large B-cell NHL. I did get shingles 5 months after i finished treatment and that is because my immune system had been so beaten down. But that wasn't itchy. maybe you had some eczema ? I wish you the best and strength to keep your mental thoughts in check. I know exercising has helped me mentally. I walk the treadmill at the gym as many times a week as I can get there. Just do all you can to keep healthy and do healthy things that are in your control. Try to think positive thoughts. I wish you well.