Non-hodgkin's Lymphoma Support Group
Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...
Just wanted to introduce myself. I am 27 years old. Been married to my amazing husband now for almost 2 years. Right now I do not know what I would do without him. I started with disorder called PTLD which is caused by anti-rejection medication which I have been from my liver transplant in 1989 to when they took me off in 2009. I have tried a few treatments to maintain it and even had many rounds of Rituxan. I went in to have labs middle of Jan. and found the level we always monitor was elevated and with my last PET scan showing spots again they felt it was time for the biopsy. I went to Mayo clinic and had the biopsy done which showed my PTLD got to a more aggressive type as well as developed into large B-cell diffuse lymphoma.
I had my first R-Chop therapy yesterday. Started my prednisone today and get my neulasta shot today as well. I will have a treatment every 3 weeks for a total of 6 with of course labs and PET scans in there to make sure things are working.
Overall I think I am doing okay. I have good and bad days. I know it is small but still struggling with the loosing my hair part. I did order a wig which I fell in love with. It is very expensive which I feel bad for. Many people are wonderful and supportive including my husband who said we will make it work to pay for it. Others say wow that is expensive and it makes me feel even worse. I am getting better at asking for help when needed and allowing people to call and visit me. Not feeling sick I find it hard to see myself as having cancer so its hard for me to have others want to help.
I am not sure if it is the steroids, which I am sure do not help, but the last few days certain things that people say to me just anger me. I read this thing that said family//friends do not know what to say either. I have been trying to take that into account and I know it is hard for everyone around me. I just don't want to feel like I am pitied or being looked after all the time. I 100% know they have the best of intentions but it is still hard to deal. I go back to work the first day tomorrow, which people already are asking if I am ready for. To be honest it is now like I can stay home the whole 5-6 months. I don't think I will ever really be ready but I can't sit at home either I need to be out and live my life like I used to. If I get tired I will take a day off but I need some normal things in my life.
Sorry that was long few things needed to get out. As I said my husband is great but I do not want to burden him with all of this either he needs breaks so he doesn't get burnt out. I look forward to the support that I will get from this group.
I had my first R-Chop therapy yesterday. Started my prednisone today and get my neulasta shot today as well. I will have a treatment every 3 weeks for a total of 6 with of course labs and PET scans in there to make sure things are working.
Overall I think I am doing okay. I have good and bad days. I know it is small but still struggling with the loosing my hair part. I did order a wig which I fell in love with. It is very expensive which I feel bad for. Many people are wonderful and supportive including my husband who said we will make it work to pay for it. Others say wow that is expensive and it makes me feel even worse. I am getting better at asking for help when needed and allowing people to call and visit me. Not feeling sick I find it hard to see myself as having cancer so its hard for me to have others want to help.
I am not sure if it is the steroids, which I am sure do not help, but the last few days certain things that people say to me just anger me. I read this thing that said family//friends do not know what to say either. I have been trying to take that into account and I know it is hard for everyone around me. I just don't want to feel like I am pitied or being looked after all the time. I 100% know they have the best of intentions but it is still hard to deal. I go back to work the first day tomorrow, which people already are asking if I am ready for. To be honest it is now like I can stay home the whole 5-6 months. I don't think I will ever really be ready but I can't sit at home either I need to be out and live my life like I used to. If I get tired I will take a day off but I need some normal things in my life.
Sorry that was long few things needed to get out. As I said my husband is great but I do not want to burden him with all of this either he needs breaks so he doesn't get burnt out. I look forward to the support that I will get from this group.
I too kept working through my treatments. I only did Rituxan so it wasn't quite the same as your experience but working gave me something else to focus on. It also helps me feel "normal" - which I was desperately looking for. Before we settled on Rituxan only, we were going to do RCHOP. I was terrified of losing my hair so I understand that completely. Honestly, you will be wearing that wig for awhile. You should have one you love and for me, it wasn't about cost...it was about feeling good about myself...no matter the cost. Many insurance companies will pay for your wig or a portion if you have a prescription for it. Check into that and see if they will help. Otherwise, don't worry about it. It is all about feeling pretty.
And as far as the grumpies.....Prednisone will do that for sure! But also the stress of dealing with cancer and cancer treatment can make us edgy. Adding in the "soft shoe" dance with friends and family and I can be a real bear! Talk to your doctor about it. Maybe consider an anti-depressant while in cancer treatment. Many of us have used one to help us over the hump. And tell everyone "I'm on Prednisone and it is making me bitchy. Please forgive me." That was the trick for me. I took it for almost 5 years for another condition. I couldn't control the temper but I always apologized later for it. People should understand. Blame the Prednisone.
Hang in there lovely lady. You will come through it and be better before you know it. In the meantime, you can lean on us here for support.
Just trying to take things one day at a time and explain to people too that I will rest but I know my limits and I need to be a be a normal person in the mean time.
Today I am tired from the last few days of work and have a sore throat so been telling people no alot when they as me to work today. Just been relaxing and keeping up on fluids. Which is not easy I am not used to having to be limited on things I can do, but I am doing the best I can and doing things I want to to balance it out. It was nice when I only had the Rituxin as I didn't feel so many effects but just the way it goes and I will get through it:)
Thanks again for the kind words and support!
GOD Bless