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NHL Large T Cell Survivor of 2 1/2 years, looking for encouragement

Posts: 4
Joined: Feb 2012

Hi, I am new here. I hope you are all doing well. I am one of those people who wants everyone to be okay and I have always been one of the strong ones in my family. I now need to be encouraged. I am having a lot of stress due to losing two jobs in six months, my car quit on me last week (transmission gone), and now I am having spells of itching and had a cold so now I have a swollen gland in my neck. I have been coughing for months but at least part of that is due to reflux and a hiatal hernia. I am a mess. I have wonderful friends and they have listened to me for a while now, and have started telling me that it is stress and I think they could be right, but I am still worried. Since I no longer have a job I no longer have insurance. I was able to pay for the cobra when I lost the first job but after the second I just couldn't do it again. I did manage to have a blood test a couple of weeks ago and my LDH was 166 which is good and my kidney and liver function were good too. I have been on another site that the blood tests mean nothing and that the itching could be any thing under the sun. I am praying that my friends are right and I am just stressed out. Two of friends have said of course your glands are swollen, you've had a really bad cold, and I have, I could hardly get words out I was so hoarse. Has anyone else had these things happen and it turn out to be a false alarm? As soon as I get a car and get approved for financial assistance at the hospital where I get treatment I am going back to the doctor for a scan, until then life is very difficult. I can't even believe that things have gone this crazy. I have never been without a car!I have to get a ride to do everything and it isn't easy, I don't like imposing on people either. When I finished chemo back in 2009 and began to feel human again I was so happy, I thought I was going to do all the things I had not yet done. For a little while things were looking up and then I lost my job, less than two months later I found another one that paid a lot better than the one I lost, I thought, this is even better, but I was tired and continued to become more fatigued. Here I am this morning at almost 4 am and I have not been to bed yet. Sorry, for being so long winded, I come from a long line of writers. My Dad and his mother were writers. Dad passed away in Nov. of 2005 with lung cancer. I miss him and I wish he was here to talk to. Right now I wish I had anyone to talk to but I don't. I am single and I don't like to worry my family. My friends all think I am losing my mind and I am wondering the same thing. Thanks for listening, any kind encouragement is welcome and all prayers. God Bless!

natalie14's picture
Posts: 36
Joined: Mar 2010

Please don't feel alone...you are never alone. I am not sure abt your spiritual life, but have you thought of praying when time are hard? I have been fighting NHL large t cell lymphoma (anaplastic) since 2008. At times it feels no one is there to listen to our thoughts or wipe away our tears..even if we have a wonderful family. I know that the Lord will carry the weight when its too much for us...and He is all I..we....need. Take one day at a time and focus on the small things in life that make you smile. I'm here for you,

Posts: 4
Joined: Feb 2012

I didn't think anyone would see my post. Thank you for understanding and your kind words. I am a born again believer and I do pray. I was diagnosed in 2008 and treated in 2009 sounds like the same diagnosis. I hope you are doing well. I am not sure what is going on with me, maybe stress, everyone around me knowing my concerns think it is stress. I've lost two jobs, my car and I have a lot of responsibility. It is nice to have someone to talk to. Thank you for reaching out to me in my time of need. I can't tell you how much it means to me. Joanna

po18guy's picture
Posts: 1222
Joined: Nov 2011

I am certain that there are a number of options for you. As mentioned in the other thread, your city, county, township, parish (depending on where you are), state of even the US government offer some level of medical assistance. If you were having a relapse, you would probably have multiple nodes swollen, and possibly the "B" symptoms of night sweats, spiking fevers and weight loss. As it is, you are under so much life stress that it alone can produce the symptoms that you have. Until you find work, you need medical coverage. I would start calling and visiting government offices until you find one that will help you - even temporarily. The sooner, the better, just in case. You can Google your particular variety of T-cell lymphoma for symptoms of relapse, as each variety of lymphoma seems to act differently.

On the faith side of things, when my T-cell lymphoma was raging, I abandoned my life to God. I let go of any claim that I had to my life, since I did not give life to myself, and I was not the one to call it home. I gave it to Him, being at peace should He decide to call me home. And, once I let go of it, everything changed. He was waiting for me to let go and trust Him. Once I did, He gave my life back to me. I am not saying that it is easy to do, but it gave me peace within myself. As it is, I would rather be in the next life than this one, but my work here is not finished yet - of that I am certain.

Now is the time to pour your heart into your faith, and trust God for each breath you take, since we do not take even one breath without His approval. Ask for strength and it will be given you. May peace be with you.

miss maggie
Posts: 929
Joined: Mar 2010


I was totally moved by your post. Especially your last 2 paragraphs.

God Bless you. Love Maggie

Posts: 3
Joined: Feb 2012

My daughter who is 18 just diagnosed with ALCL stageII. I was wondering what stage of the disease your were diagnosed with in 2008? And did you have any replase? Did it respond to chemo pretty good? My daughter was on top of the world and had so much dreams and potentials, but it seems every dream was crashed.

Posts: 3
Joined: Jun 2015

Hi Cure100,


I just wanted to reach out to you because I had a similar situation to your daughter.  I had ALK+ ALCL stage 2A diagnosed in 2002.  I was 17, almost 18.  I have been in remission until this March (13 years after diagnosis). I just wanted to let you know that I had a really long remission, and they are treating it now almost as if it's a new disease.  I'm doing CHOP and radiation.  Last time I did a pediatric combination chemo regimen that lasted a year, but this time, I'm doing standard CHOP, although there isn't really a standard given such a late recurrence.  I hope you're daughter is doing great.  If you have time to update me on her status, I would really appreciate it. I almost never meet people who have the same cancer as me.  Thanks!



CHRIS M001's picture
Posts: 23
Joined: Jun 2012

How are you doing Natalie? I was diagnosed with ALCL ALK positive back in Oct 2011. I started my 6 rounds of CHOP Nov 22 and finished March 8th. All my Lymph Nodes have been back to normal since my second chemo. Doctors told me my cancer was gone. Had my post chemo PET scan the end of March and it came back positive lighting up in the left side of my groin where everything started. They did another ct scan and still no swollen Lymph Nodes. They told me it was inflammation and I probably did the PET scan too soon after chemo (3 weeks after). I go in for another PET scan tomorrow and I nervous to say the least. I see you have been fighting ALCL for the past 4 years? Are you doing ok now? I live in Southern California with my beautiful wife and awesome 8yr old twin boys. I see you have a beautiful daughter. I hope you are doing ok.

Max Former Hodg...
Posts: 3698
Joined: May 2012

Praying for you,


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