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NLPHl and T Cell rich NHL Lymphoma

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017
 

Well I have been stalking this forum and decided to join in case I have an experience that might help others.

I am 53 year old male with NHPHL and T cell rich NHL Lymphoma. I have completed 3 RCHOP treatments and 2 intrathecal (spinal infusion) treatments. If all goes well I am halfway through both types of treatments.

I will get a scan before my 5th RCHOP treatment. I have researched  and had 2 second opinions on the course of treatment . I went to 2 local oncologist and to MD Anderson in Houston, Texas. All the ONC advised same course of treatment. The first round of RCHOP melted away the visible tumors within 10 days. I am not sure how the cancer on the inside responded. I guess I will know that when I get the PET scan in about 5 weeks.

I know this type of Lymphoma is rare and having both types at the same time a little more rare. 

First RCHOP treatment went ok . I had the Rituxin the day before the Chop for the first treatment since Dr was concerned about tumor liysis. I had some reactions to that but none on treatment 2 and 3 and those were same day as the CHOP. Hair started falling out after week 2 after treatment 1 and I justed shaved it off.  The nurse giving me my first treatment also gave me the flu so I was in the emergency room  after the first treatment. They just diagnosed the flu and sent me home with Tamiflu.

My WBC/Neutrophils keep dropping on day 14  instead of day 7. The Neutrophil has been 400 and 600 so I was put on antibiotic and Neupogen shotS. Treatment 3 I was given Neulasta the day after treatment.

The prednisone throws my blood sugar out of whack for about 7-8 days. I am not diabetic but for those days I am. I can manage it with diet. My only other side effects have been fatigue and constipation. I stay on laxatives and stool softners the day of treatment and about 7 days afterward until things get back to normal.

I am just carrying on waiting to see the outcome. Hoping for the best and planning for my family if things do not go as hoped.

 

 

Rocquie's picture
Rocquie
Posts: 817
Joined: Mar 2013

Welcome to the group. I'm glad you decided to join us rather than being on the outside looking in. This is a very caring and supportive group.

It sure sounds like you did your research and homework and went into your treatment well educated. Other than that bout with the flu, it sounds like your treatment is going well.

The prednisone is the dreaded medication of almost all of us. And yes the constipation and fatigue are familiar too. Again, it sounds like you are on top of those things too.

I hope you stay around and keep us posted on your progress. It is always inspiring to hear from survivors that are doing well.

Best,

Rocquie

 

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Rocquie,

Thanks for the welcome. Yes I have researched until I almost feel like I should be taking my boards for the medical exam. lol I have a lot of friends and family who want me to quit researching but not in my nature. It is much easier to know more about what I face and this forum has lots of info. Just understanding the side effects and how everyone else copes is very helpful. I am so anxious to get through the next treatment and get a PET scan I can hardly wait. The waiting is the hardest part for me. The unknown makes it hard for me to plan. I have been so encouraged by how many on here are cured or in remission.  Will keep you all updated. Good to find some people who truly have an idea what it is like. This has made me much more understanding of people and what they go through. I have been healthy all my life and never appreciated the good health I had. Therefore I had a hard time understanding  what others were going through who had medical issues. I try not to judge others who are probably just like I was before I was diagnosed. Anyway thanks again for the welcome.

lindary's picture
lindary
Posts: 613
Joined: Mar 2015

I am an information junky too and my Drs encourage it so I know what you mean about the medical knowledge. I also believe that the more you know the better enabled you are to make decisions. In doing my research I encountered posts on this site several times. I finally decided to join and glad I did. Talking with people who have been through it is so comforting. 

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