Non Hodgkin's lymphoma

Just checking in. Since being on Neurontin/Gabapentin the neuropathy is better, which I enjoy because I can walk more. I am still nauseated unless I take Phenergan and Zofran, but at least I am able to enjoy lots of veggies and some fruit, since the obstructions are gone. My head hair is slowly growing back, and maybe I will stop wearing beanies by this summer.
What does anybody have to say about my team not wanting to do a 6 month PET scan if I am not symptomatic? My only symptom was nausea over 4 years, and I still have it even though the tumor was resected and I completed R CHOP and they say I am cured. They say that because I had so much xray and nuclear medicine during those 4 years while they searched for a cause for the nausea, and that the PET is so heavy xray/nuclear medicine-wise, that it's not a good idea. I was hoping to be able to get that benign PET done every 6 mo...
Thanks for your comments....

Yes I worry about a recurrance. When its time for my next check up which has been a year now, I worry the most when its close to my next PET scan or CT scan. I had my yearly check up March 30th and it was clean. No detectable cancer. What a relief. Told to come back in a year. So I won't worry too much until it's time for my next scan. Then the same routine.

carolelaine, how are you feeling since your last chemo? I hope the shorter exposure has decreased the side effects. My thoughts are with you. gp

Hi @vonbaron36
I'd like to introduce you to @travelgirl who also has follicular lymphoma, a type of non-Hodgkin lymphoma.

@vonbaron36 I also have follicular lymphoma. I been on a watch and wait approach for 2 1/2 yrs..

I was diagnosed with Central Nervous System Large B Cell Non-Hodgkin Lymphoma in February of 2016. After bouncing all around from dr to dr over a seven month period, Mayo in PHX diagnosed me in 48hours. I was down 30 lbs, lost cognitive abilities, balance and continually passed out. Mayo literally saved my life. I was in the Mayo hospital for over 3 weeks. My treatment was high dose Methraxate, rituxun, and Temadar. Mayo set my protocol and sent me back to my home state after finding a Hemo-Oncologist to treat me. My last treatment was December of 2016 after spending over 76 days in hospitals during 2016. The treatment was brutal, but today I am fully functional and well. I am so grateful for Mayo and the fabulous care I had there.

Hello @mepowers, thank you for sharing your experience with your treatment at Mayo Clinic. You mentioned that you are functional and well following a tough go with your treatment. If you don't mind sharing, how has your recovery been since spending 76 days in the hospital? That is a long stay, but it is great to hear you are progressing, is each day better than the last?

I actually didn’t spend 76 days in a row. Each time I went in for my high dose Methatrexate treatments, I had to stay for a minimum of four days. I went in every other week for the first half of the year and then monthly for the second half. I was able to do Rituxin as an out patient at the Cancer Center and Temadar at home. The first half of the year the treatments were busy killing the lesions. By about June, the Cancer was gone, but my protocol had me continuing the treatment. My cognitive abilities were severely impacted with the many lesions and certainly that improved. The first part of the year I survived Cancer, and during the second half I survived the treatment. Hospital stays were rough being connected to the IV 24x7 along with the ensuing side effects of the treatments exasperated by bad food and lack of sleep. By the end, I felt I knew more about my treatment than the revolving door of residents. This was at the hospital in NM, not Mayo. Mayo is a five star resort compared to the 50 year old hospital I was in. Care was fine,but the facility was awful with shared adjoining bathrooms and showers down the hall. The chemo kills everything, so my kidneys and GI tract were the primary targets. I still have some minor issues, but nothing that can’t be dealt with. Chemo brain followed me for a good 8-12 months post treatment. I could often see the words I wanted to say, but couldn’t find the words to say. I also had and still have issues with reading retention. I listen to lots of books these days. I was super active prior to being sick. I didn’t do much besides walk on a regular basis while I was undergoing treatment due to the fatigue factor. Once I was done getting treatment, I started working with a trainer that helps me reach my potential every week. At the nine month mark, I competed in a competition called the Sampson Challenge where there are 10 events. My goal was just to finish it. I ended up coming in second in the 50+ Female division. Every day I feel gratitude for my good fortune.

My daughter has lymphoma cancer and finished 6 chemo teraphies

praying for a positive outcome for her!