Follicular non Hodgkin lymphoma

[deburr3375]

In 2016 I was diagnosed with non Hodgkin lymphoma stage 3. I went on watch and wait and 7 months later everything went crazy. In sept 2016 i on chemo which shrunk the one lymph node. Great, but I still feel like crap. Now I am doing maintenance for 2 years. The thing is I see people on here and others that have basically the same as me and they can continue with their lives like they did before. Me on the other hand was approved for permanent disability. I had a job that I loved and now I can't even be active very long before I have to sit and rest. I guess I just don't understand why I can't bounce back. I miss my life and my job. Thanks for listening and if anyone has any suggestions or comments I would appreciate hearing what you have to say.

[Shar0n Volunteer]

Hi , I completely sympathise with you although I have not needed treatment yet (I also have Follicular Lymphoma). I think your case shows how everyone responds differently to treatment. Some people seem to recover fairly quickly while others can't shake the tiredness and general feeling of being unwell for a much longer time.

The best you can do is to be patient and eat as healthily as you can while taking whatever amount of exercise you can - even if it's just to walk on the spot for a few minutes at home every day.

You are still on treatment (maintenance) and that is affecting your body too so you need to cut yourself some slack while that's going on. I hope someone who has walked the same path will add their thoughts and coping strategies. Hang in there - sending you best wishes.

[Gigimum in reply to Shar0n]

My husband was stage 4 NHL in 2013. Had R-Chop & 2 yrs Rituxan & has been NED ever since, Praise God. He did well when on some steroids, but now he has been weaned off all. He has no energy & sorry to say he feels like the treatments aged him. I, too, am discouraged, & have tried everything to get him motivated: However, without energy, even when he attempts to do something fun, it ends up the opposite. We are thinking perhaps something else is causing this tiredness, so he is seeing a Neurologist, Cardiologist, & having a scan next week. It is soo true, everyone reacts differently with treatment. Having a positive outlook is important, as well as exercise (starting slow but constant) eating healthy, & perhaps joining a group of upbeat survivors. We were told it would take maybe 5 years to recover, & unfortunately, we are now in that range. I now am praying that we will change our personal outlook, instead of praying for our situation to change. I am thankful that my husband is still with me & try to focus on this most gracious gift!

[Joe_gilbert in reply to Gigimum]

Here ivwas told its 5 years before your classified as cancer clear. I had chemo last year and i too feel tired alot but for the most part feel good

[1Anj1]

The chemo is a poison. It carpet bombs healthy and unhealthy cells alike.

It keeps doing that until the numbers stack in your favour.

Your body is just responding to having taken a good kicking by the chemo.

This a good time to rest the body but sharpen the mind!

[deburr3375]

Thank you for all the replies. I am trying to keep a positive attitude and pacing myself everyday. I just get so discouraged sometimes. However I will not let this defy me. I wish you all well.

[Joe_gilbert in reply to deburr3375]

Good luck. I too feel tired still but for the most part not bad. I know it will take time. Should see a dietician that deals with natural foods to find foods that give you energy.my wife switched me to all natural and its has helped some . again good luck and take care

[rickimintz in reply to deburr3375]

I had follicular NHL in 1994. I am still here and feel great aside from the 71 year old aches and pains. Give yourself time. Your body has to regenerate. It will and you will be saying what I have just said to someone else soon.

Good luck!

[BelindaTupper]

Hi deburr, try not to get discouraged with the time it takes to rebound. Everyone is different and it may just take you some time. So much also depends on your medical team, too. My family doctor would have preferred I not return to work full time, but I wanted to try. I needed to try. I do get tired and when I did too much last summer I ended up sick with other virus and infection unrelated to lymphoma, but a product of my crappy immune system. I have to be careful. My doctor likely would have be fine to sign off on a disability, but I didn't want that.... for me. When my doc told me thst I shouldn't be working full time ever again, I fell apart...I couldn't cope. I went to talk to my psychiatrist, she said to me "you know what's good for YOU"..,."there's an ongoing internal dialogue....am I well, am I sick..., if doc tells you you're sick (too sick to work) it didn't resonate well". I decided to make my own decision about whether I am well or I'll. I felt a lot better once I decided I'm well and WANT to focus on improving my health....if I give up, I'm no good for anything.

I'm sharing this, not to try to convince you one way or the other, but search your mind, heart and soul, and use those to make your decision of whether you are well or ill. My anxiety disappeared once I made the right decision. ...I hope yours will to. Blessings to you...hope you are well!

[deburr3375 in reply to BelindaTupper]

Great advice Belinda. The job I loved was a dietary cook in a wonderful nursing home. I have tried to simulate a typical day for me at home. Unfortunately I found my stamina is not even close to what it use to be. Even though the nursing home and my co workers said they would work with me, I can not allow them to carry me though a day at work. Not to mention my crappy immune system would be a problem. I am trying to adjust, people tell me that they wish they didn't have to work no more, but they don't realize what I go through everyday.

Be well

[BelindaTupper]

I do hope things improve for you, over time.

[jamoza]

I can’t offer you advice, but I can offer you my prayers and best wishes for a recovery. I was diagnosed with fNHL stage 3 in 2012 but haven’t needed any treatment at all. I get tired easily and can’t watch tv etc without losing concentration but that’s about all I have to put up with. I changed my diet to low-carb, high, healthy fats and high protein after diagnosis and also joined a running club. Also got lots of prayer support and encouragement from my Church family.

[JeanL54]

It does take some time to feel like yourself again, but I agree with SharOn that it is important to try to get some exercise in, even a little, each day. It took me some time to get back my strength but it did come back. I too felt like it aged me, and likely it did, but you can overcome that by being a little more active each day. Just don't overdo it. A little at a time. My doctor had me do an excercise class at the hospital to try to regain some strength. Ask you doctor for tips on what to do. Take care and God bless you on your recovery.

[BLP1211]

I am new without much personal information . However, within weeks my active lifestyle has decreased drastically. I do not plan to begin with chemo and/or radiation. I will see my doctor for the second time on May 16th.

[BLP1211]

I read something today about maximum health; exercise, plant based diet.. healing foods, water, sleep, fasting, vitamins, etc. I am still on watchful waiting..3 -4 years. I haven't had traditional treatment yet. I am always working inch by inch to improve upon areas for better health. I have notice that I can last a little longer working around the house. At one time I could only remain active 3-4 hours. Sometimes I can go for 6-7 hours.