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Joined: May 2004

I have been in remission from NHL since Nov. 2003.Things seem ok but the emotional ups and downs are tricky. I have had 3 CAT Scans since the last treatment, so far everything looks good. Lately, depression and loss of appetite have started along with some symptoms that may accompany NHL. I'm due for another scan next month so hopefully and prayfully everything will be fine. I knew about side affects after Chemo but did not expect so many emotions. I had all these emotions during Chemo also, but nurses and doctors said it was normal. Anyway, it makes me feel very isolated; my husband has been very understanding but of course he can't grasp (and I don't expect him to) the full extent of the emotional effects. Can anyone chat with me who has had similar experiences?

Posts: 9
Joined: Feb 2004

Hi Bobbia,
I am also in remission since nov 03 with nhl. I surely know how you feel. I'm just glad I can wake up in the morning and kiss my 3 kids and tell them how much I love them. I have to take another cat scan june 1 st. All seems well. Have alot on my mind about relapse. I also lost my appetite. Local doctor wants me to go on maintenance therapy with rituxin again. I have been drug free since nov 03. I have been taking corol calcium and essessic tea naturally . It seems to give me more energy and my appetite back.
My specialist at the carolina's cancer institute says that my remission may last days, years, or even decades. He's says their's not alot of data or feedback about the drug rituxin / chemothrapy.
I just live one day at a time and count my blessings. I find it better just to forget about it and thank God for letting me wake up in the morning and take a breath of fresh air.
Take Care,

Posts: 2
Joined: May 2004

Thanks so much John; your reply has been very encouraging. This was the first time that I had shared this with anyone. Although I'm down right now, I have faith that my trust in God will help me to fight whatever battles which remain. I've read a little about Rituxin and plan to ask my doctor about it. I'm scheduled to have a CAT on July 1. This will be the third one since August and so far everything has been clear.

John, I wish you and your faily all the best; having the spirit that you have certainly helps. Thanks again.

kklj's picture
Posts: 2
Joined: Jul 2004

Great posting on the discussion board John39!
I just responded to Bobbia's 5/04 message, and your reply reminded me of how much I have to be thankful for! Thank you! KKLJ

sfleming's picture
Posts: 8
Joined: Sep 2003

Hi Bobbia,

Such wonderful news that you are in remission! A long journey for you, I am sure, but one that sounds quite familiar to me, and I'm sure the others who have read your post. I am also in remission from an aggressive form of NHL. Chemo was not as difficult for me emotionally as life post-cancer. Anxiety, depression, and the dreaded FEAR are part of the new reality I, and you, have found. I expected that once treatment was completed and I was rid of cancer, everything would go back to normal. I have come to learn what nearly every cancer patient (and caregiver) will tell you -- it is not possible for life to go back to the way it was.

That does not mean it is hopeless. Bobbia, I have had to do a lot of reading, chatting (here), self-discovery, and conversations with my husband, to get to a point where I could get through the day. I am now much farther along than I was and now am very happy and content. You can get there, you have options, but most of all -- you are normal, your feelings are normal.

Here are some thoughts/options for you in no particular order. Please feel free to contact me directly through ACSCSN if you would like to. I wish you the best on your journey and know you will do great. Hang in there.

1.) Read. There are wonderful books for post-treatment. I found many useful ones (see my personal web page for suggestions) that will help you to realize you are not alone and what you are feeling is normal;
2.) Chat. This website is a wonderful source of laughter, friendship, and solidarity;
3.) Your Circle. Whether it be a family member or friend, find someone with whom you can share your honest feelings. Ideally this would be your husband. Perhaps once you get a better sense of your situation, he will as well. That's what happened to me. Cancer/women/emotions not the top of the list for men to understand. If you don't get yourself right now, he will have a tough time. Once you read & chat a bit, you may be able to verbalize better and that will provide you and him some discussion points. In addition, ask for help from your circle if and when you need. They are not mind readers and most likely want to help but may not be sure how they can. Ask for what you need from them (that is if you know -- if you don't know, well then just go for ice cream together or for a walk);
4.) Tests/Symptoms. Tests are so awful to wait for but so hard to be away from, they provide you the info you need to know. Find out from your oncologist the test plan/schedule for you over the next few years and stick to it. As far as symptoms, honey I self-diagnosis every day. It will take time for you to once again trust/learn your body. Please do not hesitate to speak with your doctor about these. For example, the lump in my armpit sent me into a tailspin for a weekend, uncontrollable crying and devastation. It was simply an ingrown hair invisible to the eye. Who knew? Also it is important to know that the affects of treatment do not dissappear immediately. You should speak with your oncologist and say, "what affects may be reasonable for me to experience post-treatment and how long may they last." Who knew you may feel tired for one year or more after treatment? I didn't. Something for you to consider asking. However by sticking to your test/scan regime, you will be reassured should anything return, you will know very early. I would imagine you have had and will continue to have PET scans? Additionally, I recently had a talk with my oncologist about what we would do if it came back, she told me options and treatments would be available and a recurrence would not be a death sentence;
5.) Medication/Sleep. Many, many, many people take SSRIs (e.g. Paxil, Prozac, Wellbutrin). I took Paxil for many, many months but at the same time experienced some similar symptoms to NHL. I got off the SSRI so we could distinguish what the cause was (under medical supervision). Withdrawing from the Paxil was one of the hardest things I have ever done and it was a miserable few months. However, while on it, I was very content and happy. If you consider this option, used by the majority probably, please ask about withdrawal. Instead of the SSRI, I have opted for a sleeping pill and tranquilizer prescription. I use the tranquilizer once a week (just knowing I have it makes the difference) and get a good night sleep. Helps me to deal emotionally with the what needs to be dealt with. If you are not sleeping well, consider this may be impacting your feelings of anxiety/depression/fear. Essentially, know medications are available;
6.) Diet/Exercise. You know this is important. Consider your current lifestyle and what impact this may be having, if any, on your disposition. For example, my lack of exercise causes me to be depressed (= negative body image). Not everything is cancer-related for us but sometimes it is hard to distinguish what's what anymore;
7.) Support. You may consider a support group or individual therapy. Many insurance plans now will cover therapy. You see how much I am typing here? I am a talker. If you are a talker and feel dialogue (not typing) is important and you need to express yourself verbally, this may be an option for you to investigate;
8.) Happiness/Joy. Where do you get this from? Surround yourself with as much as possible. Positive experiences have a tremendous amount to do with disposition;
9.) Faith. If this is part of your life, consider whether you are having doubts or concerns that may need to be addressed with a priest, rabbi, or other; and
10.) Accpetance. Life is not the same for you nor will it ever be. This is a journey, not an end. You have choices along the way, believe it or not. With treatment it was easier. You go to chemo, sit, get treatment, talk to nice nurses, go home, feel like crap, feel better, go back to chemo, sit, get treatment, etc. Well the physical portion of treatment may be over but the psychological is just as important. The mind-body connection is tremendous. Feelings are normal, natural, and human. You are human. You can be sad, anxious, depressed, afraid. You can also be happy, content, and optimistic. You have been through a tremendous traumatic event. Allow yourself to grieve but also allow yourself to be reborn and try to find a balance. Finding the middle ground is quite the challenge but I hope you will consider some of the options that I have and that they may help you on your journey.

Be well,

Posts: 2
Joined: Nov 2004

Hi Suzann; My name is Joe and I was recently diag in May with NHL stage-3 B-type. I was just reading your reply to Bobbia and I found your feedback to be very informative and inspiring. I'm done with Chemo now and I found out one of the hardest things to deal with having this diese are emotions and Anxiety. I have two kids, 2 and 5 and when I'm with them sometimes I just breakdown and start crying. Before my cancer I never used to cry. Now I noticed to myself that I'm crying more and you know what It feels good. Your right about a new journey. That's exactly what it is a new journey to a new life. Now I wake up every morning and thank God for my new life. Take care survivor and enjoy your new life.

kklj's picture
Posts: 2
Joined: Jul 2004

Hello Bobbia. I finished my CVP chemo for NHL in September 2003 and I'm STILL troubled with side-effects. Depression and moodiness has become a real problem and we discovered that my ovaries had completely shut down. At the time of my FSH and estradiol blood tests I was 39 with levels of a post-menopausal woman (~60 +). This evidently really creates problems (understatement of the year). My doctor put me on low-dose birth control pills for 4 months. I haven't seen long term changes yet. I don't know how old you are, but keep in mind that chemo can have a very real and long term effect on cognitive skills too (ie: memory, multi-tasking). Talking about this with women has been very helpful for me and also I have been talking with a therapist. Keep strong Bobbia and be patient with your body. It is still recovering from treatment. Write back if you have time.
kklj (Kristine)

Posts: 2
Joined: Feb 2005

Just read your message and understand totally. I have been in remission since 12/02. I go through the anxiety before every dr. check-up (4 months). Lately it has gotten worse. I would like to know what I could do so I don't have this.

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