That is excellent news! I'm so glad you shared it with us. Rituxin did wonders for me too. While the infusion is a little bumpy, it does the trick!

I'm sending you good wishes that your last treatment goes smoothly and you remain cancer free.

lexisgirl,
While you received your rituxin treatments were you tired a lot of the time? Did you do the 2 yr maintenance with rituxin? Were you able to work during treatments or maintenance? Let me know, I'm curious how things went to for you. I'm assuming that you are cancer free now is that correct? Thanks, Jayne

I did Rituxan alone and have not done maintenance treatments. It was relatively new when I started it 9 years ago and maintenance therapy was still in trials. I did a series of 8 treatments. While I was on it, I was incredibly tired. I had little energy and struggled to make it through each day energy wise. I did keep working. I took the day off of my infusion but then went back to work the next day. I was allowed some flexibility so some days, I left an hour or two early and finished the day from home. Honestly, I don't know how I did it. Over the 9 years since initial diagnosis and treatment, I've worked out a deal to work from home full time. I like that alot.

I wish I was cancer free but I am not. I have Follicular Small Cell NHL. It never goes away completely and will always come back. The average remission is 18 months. I've had a cancer lump in my nose for a few years but it is not growing or bothersome so we haven't treated. It took awhile for me to get used to being comfortable living with active cancer in my body but learning to do that was critical to my well being since I don't have a choice.

Hi lexisgirl,
Thanks for sharing part of your story. I have been too tired to work and my doctor recommends not working unless I absolutely have to. I may lose my job. I'm a physical therapist and I just don't have the energy it takes to do my job or much of anything else. I'm single so this whole thing is stressing me out financially. I feel like I should be happier because of the results of my PET scan but I don't feel better. I just needed to share this with someone who might understand because I'm feeling pretty down right now and people think that I should feel so relieved but I don't really at least not yet. Don't get me wrong I'm very grateful for the good results but it doesn't change the way I am feeling. I don't know if I am going to feel this way for the 2 years of bi-monthly treatments, I sure hope not.

Does your cancer go into remission or do you continue to have it at all times? You mentioned the average time of remission was 18 months, have you gone that long or any longer. Do you still feel tired or sick now?

I have read some of the other postings on this site and I see that you are a big supporter of people, that is very kind of you!!

Thanks for listening/reading,
Jayne

Hi Jayne,

Don't feel bad that you aren't excited (like others expect you to be) about your PET scan results. I know exactly what you mean about not being excited but still happy. It is tough to be excited when you feel like crap and still have a long battle ahead.

I started not being so tired after my treatments were done but it took awhile to build up stamina. I also got an auto immune disease during cancer treatments that also cause fatigue (Polymyositis) so it's been a double whammy. I was always told "Fatigue breeds Fatigue" but I found it very exhausting to try to exercise. I did what I could and called that good. You need to be kind to your body and listen to it so it can keep fighting your battle.

I do go through periods of remission. It has been over 6 years since I've been treated. Funny thing is I take chemotherapy medications to control the Myositis. They feel that might be a key part in my remission length because it is unheard of.

I'm single too and I'm a Mom so I know what you mean about being scared about work and finances. I luckily have a desk job so it isn't as demanding physically then a job like yours as a PT. I was able to go to work but that was about it. I couldn't really cook anything that took any time or effort. I struggled to clean the house or do laundry. I had a friend that did my grocery shopping because it was too exhausting to walk through the grocery store. My family was semi helpful during treatment but the day I was done, the help stopped even though I still felt poopy.

Be gentle with yourself and do what you need to fight this battle. There is plenty of time to pick up the pieces after. You will start feeling better. Then you can figure out next steps. Have you appied for disability? Have you considered taking advantage of some help such as a workshop on financial considerations for cancer patients? I know my Oncology office has a list of monthly support services as well as a counselor to meet with cancer patients to help them sort out things including how to deal with long term leave from a job. As a cancer patient, you are protected if your employer qualifies for ADA and FMLA. Be sure you take advantage of all things out there to protect you.

I am happy to help others. I know I sure needed help and promised myself I would help others when I was able. Please let me know what I can do for you.

Hey lexisgirl,
Thank you for your response. I felt better after reading it. I felt that you had an understanding and gone through similar events. Your support was just what I needed at the time!! Thanks for your suggestions for additional help.

I looked up Polymyositis and that doesn't sound like fun either. Are you on chemo meds for this indefinitely or do they cycle the meds in some way. Will this disease go into remission or be cured?
Thanks for your support,
Jayne

I do hope you feel better Jayne. Know you are not on this journey alone. There are tons of survivors that have walked a similar path and understand what you are going through.

Polymyositis is not picnic and I actually consider it worse then cancer for me because it is rare and there is no medications to treat it specifically or cure it. All they can do is knock out our immune system. Because it is so rare, there isn't much interest in research due to funding. So it is uncurable and I will most likely have to take the chemo medication the rest my life. The good news is it is a very small dose. So small, I administer it myself. And it is helping my cancer too so that is a double benefit.

I hope you are doing well this week and enjoying a break before your next treatment on the 30th.

So glad to hear the good news! That is just so wonderful!

Thank you Irischar! Do you have lymphoma also? Can I ask what your story is?. I hope you are doing well. Jayne

That's excellent news that the pet scan was negative. Well done

i am glad to hear that! congrat! i will have my first dose theurday, the 13th. i have stage 3 nhl. this gives me great hopes, and i am anxiuos to start.