Follicular lymphoma

lysmith
lysmith Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hello,

I am new to the forum.

I was diagnosed in Sep 2015 with Follicular lymphoma and have a Power Port implanted in my left upper chest. In the last year I have had chronic pain and numbness in my left arm, shoulder and upper back.  It seems to be my main side effect other than tiredness. Has anyone else experienced this? I have been in remission and am currently on Rituxin every other month.

I am so happy to see others living life to the max as I try to do, including as much travel  as possible. We got an RV this year and love going to  Montana's beautiful lakes with our 2 dogs and our friends. We also made a bucket list trip to New England to feast on soft shell lobster and watch the Boston Red Sox play in Fenway park. The lobsters were the main course and Fenway park was dessert! What a beautiful part of the country we live in.

Thank you for any input from other members.

 

 

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    #2
    What does doctor say?

    Sorry to hear of this. Do you mean arm pain from the port? Or possibly from a tumor that was impinging on a nerve? Wondering if doctor has weighed in, or ordered scans, neurological testing or the like?

  • Kats Corner
    Kats Corner Member Posts: 1 Member
    #3
    Follicular lymphoma new diagnosis

    Hi

    Lysmith,

    This is my first post. I was diagnosed Sept 2017 with NHL follidular lymphoma B-cell stage IV with bone marrow involvement. My doctor wants me to start treatment with Bendamustine + Rituxan soon. I am trying to get a second opinion at the Seattle Cancer Care Alliance before I commit but wait is long.  I haven't had my port installed yet, but women in my cancer support group suggest I get it on the right side...not sure if left side causes more problems? Wondering what your doctor has said? 

    It is good to hear you are in remission and able to travel and do thigs.....I am still not fully processing my diagnosis  and afraid of the limitations it will impose on my life.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #4
    Kats Corner said:

    Follicular lymphoma new diagnosis

    Hi

    Lysmith,

    This is my first post. I was diagnosed Sept 2017 with NHL follidular lymphoma B-cell stage IV with bone marrow involvement. My doctor wants me to start treatment with Bendamustine + Rituxan soon. I am trying to get a second opinion at the Seattle Cancer Care Alliance before I commit but wait is long.  I haven't had my port installed yet, but women in my cancer support group suggest I get it on the right side...not sure if left side causes more problems? Wondering what your doctor has said? 

    It is good to hear you are in remission and able to travel and do thigs.....I am still not fully processing my diagnosis  and afraid of the limitations it will impose on my life.

    Port

    Welcome to you Kats.  Seattle is an area with some of the best cancer care in the US.

    Left or right side is irrelevant for port installation, and also choice of side does not differ between men or women; there are no sexual differences regarding port installation that I have ever heard of.  My surgeon asked which side I wanted to use, and since I had a lot of scar tissue on the R, we chose L.   But he said that other than that, it absolutley didn't matter.  If I ever need another port, it wil go on the R.

    All of the infusion nurses at the center where I went, a room with about 45 infusion stations, always asked all men and women patients first "which side their port was on."  Further evidence that it is wholly random.

    Bottom line:  If you have a preference, go with it. Laypeople at support groups or boards like this often have "wisdom" that consists of nothing more than that they heard it from someone else.  It is usually worth double checking lay facts at an authoratative medical site when you have any suspicions.  None of us here is a medical authority, and do not write as such (there are a few doctors and a good many RNs, but they are incognito, and do not write as doctors or nurses, per the rules of the Board itself.

    Medically, there are no differences, L or R, in port "problems." And port problems generally are extremely rare; occasionally, some one will mention some little issue or other.    The surgeon will insert the bottom end of the cath from the port to a major vein, usually the superior vena cava, but other large veins can be chosen, then sew the little disk that hold the port ball in place into muscle tissue at the install site, to prevent movement of the port itself later, and close.   Port installs don't usually take over 30 minutes.  Port removal is also quick and easy. Most scars are minor and cosmetic surgery can be done later if the patient chooses, but most patients view that as unnecessary.  My port site left a little recess, which can be seen if I have my shirt off. Because I was a sailor for years, if a kid asks about it, I just tell them that I was a sailor and it is my "port hole."

    The important thing is to GET a port, since PIC Lines or inserting a cath for every infusion is vastly inferior to a port.   Ports are discreet and allow for a blouse or shirt to be fully worn after the IV needle is inserted, which only takes a few seconds per infusion session.  I usually wore a polo shirt, and all the nurse had to do was stretch the shirt a little for access, and there was no further port issue until the end of the visit.     Port IVs are NOT disconnected for bathroom visits; the patient just rolls the IV tree to the bathroom with them, which is no big deal -- easy.

    max

  • lindary
    lindary Member Posts: 711 Member
    edited November 2017 #5
    Port

    My port is on the right and I love it. No problem at all. It has saved the veins in my arm. Well, at least my right arm. Before I got the port we tried to alternate which arm was used. Right about the time I got the port the veins in my left arm kind of dissappeared. I really don't even think about it being there. 

    I was diagnosed with follicular lymphoma Dec 2015. Did 6 cycles of R-Chop. When that didn't get it all I did 3 rounds of RICE (3 days of chemo) and was preped for Stem Cell. The SCT was delayed a few times and eventually cancelled. I just finished my 2 years of Rituxan treatments and elected to keep the port a little bit longer. Still working and living my life. 

  • donald51
    donald51 Member Posts: 62
    #6
    Kats Corner said:

    Follicular lymphoma new diagnosis

    Hi

    Lysmith,

    This is my first post. I was diagnosed Sept 2017 with NHL follidular lymphoma B-cell stage IV with bone marrow involvement. My doctor wants me to start treatment with Bendamustine + Rituxan soon. I am trying to get a second opinion at the Seattle Cancer Care Alliance before I commit but wait is long.  I haven't had my port installed yet, but women in my cancer support group suggest I get it on the right side...not sure if left side causes more problems? Wondering what your doctor has said? 

    It is good to hear you are in remission and able to travel and do thigs.....I am still not fully processing my diagnosis  and afraid of the limitations it will impose on my life.

    Your treatment

    Hello,

    Kats Corner...I had the same dx as you back in 2008 and did 1 time zevelin infusion and rituxin maintenence therapy! Pronounced N.E.D. (No Evidence of Disease) within 3 months and no ill effects, such as loss of hair, loss of appetite, nausia, etc.. Have you started treatment yet?

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    #7
    Port placement

    Right side if you drive, left if you are a passenger, so that the seatbelt does not run directly over the port. Probably no data, but a collision "could" cause the seatbelt to pull the catheter loose, causing internal bleeding. Not good.

  • hummingbird1
    hummingbird1 Member Posts: 3
    #8
    Stage I only indolent type follicular lymphoma

    Hey ya'all, guess I am lucky so far, no ports. I am a Seattle native,  though I now live about 2 hours away at the base of Mt Rainier. Seattle Cancer Care Alliance (SCAA) is where I have been going but do not have to go back for 18 months, which is good! I hate going there and facing my mortality which I see through my fellow waiting room "waiters."

     I am a psychiatric nurse practitioner and found myself writing poems after each visit to SCAA (my husband thought they were quite good, but I would never wish I had to write them, lets go back to the denial of death, please!)  Indolent follicular lymphoma is a slow death without a cure, guess I will be writing lots of poems (and reading alot of poems, by Tagore, Rumi) listening to past tapes I had from Ram Dass, reading more Ekhert Tolle and practicing more of my learned meditation from Pram Rawat (Guru Maharji) and thanking Jesus everyday for letting me know how God thinks and acts.

    Anyhow, dear friends, am glad to have joined and read some of your posts. Tears in my eyes, love in my heart, thank you fellow sojouners!

    Hummingbird1.

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #9
    hummingbird1 said:

    Stage I only indolent type follicular lymphoma

    Hey ya'all, guess I am lucky so far, no ports. I am a Seattle native,  though I now live about 2 hours away at the base of Mt Rainier. Seattle Cancer Care Alliance (SCAA) is where I have been going but do not have to go back for 18 months, which is good! I hate going there and facing my mortality which I see through my fellow waiting room "waiters."

     I am a psychiatric nurse practitioner and found myself writing poems after each visit to SCAA (my husband thought they were quite good, but I would never wish I had to write them, lets go back to the denial of death, please!)  Indolent follicular lymphoma is a slow death without a cure, guess I will be writing lots of poems (and reading alot of poems, by Tagore, Rumi) listening to past tapes I had from Ram Dass, reading more Ekhert Tolle and practicing more of my learned meditation from Pram Rawat (Guru Maharji) and thanking Jesus everyday for letting me know how God thinks and acts.

    Anyhow, dear friends, am glad to have joined and read some of your posts. Tears in my eyes, love in my heart, thank you fellow sojouners!

    Hummingbird1.

     

     

    Follicular

    Hummingbird,

    Follicular Lymphoma is a highly indolent cancer that is almost always easily contained, often for a decade or much longer.  It is in no sense a "death sentence."  Most writers here with it live very long and essentially healthy lives, and are happy in the process.

    I took a class in college on Death and Dying practices in Western societies.  Taught by a sociologist who is the leader in this field; he wrote our textbook, the most commonly used in the US.  Western societies are all death-denying:  it is compartamentalized, rendered anaseptic in clinics; it is not for "nice people" to have to view.  One hundred years ago, grandparents all died at home, and the wake was in the family living room. Families had family cemetaries.  Today, that would be considered morbid.

    Cancer is a rude awakening for many.  I went to a large infusion center (about 45 stations) twice a month. Many cases were profoundly sad and moving.  Among the people I got to know somewhat personally, ALL died, but only one had lymphoma (advanced Mantle Cell), but one other had leukemia.  Most had the common killers: Prostate, breast, colorectal, lung.   A lymphoma diagnosis is virtually never like a diagnosis with any of those diseases if they are past Stage II.

    My first-ever visit with an oncologist was at a different location, but same hospital system.  My wife and I had an early morning appointment, just as the opened.  It was mid-Winter, and still dark when we got there.  I was significantly worried about how some of the people might look, since I am severely squeemish myself.  The frist patient in was a kid, about 12, with his parents.  We began speaking, and noticed his head was "ringed."  He had had a brain tumor, and his skull was removed to access it. Yet the kid seemed fine (his parents did not seem fine).  Next guy had had most of his neck cut away, and spoke into one of those electronic devices held to the neck.    I thought I was going to faint.....

    You will see "messed up" people, but they are mostly all beautiful, mostly full of hope.    

    Read Gerard Manly Hopkins poem, Spring and Fall.

    max

    Hopkins was regarded by some as the greatest of the English Victorian poets.  He invented a pattern known as sprung rhyme.  He was an Englishman and professor of Greek at Oxford, and a Catholic priest in the Jesuit order.

    This poem is to a young girl as she mourns death when observing trees 'unleaving' in the winter season.  He points out that what she is really mourning is the awareness that she, like all living things, is born to die.

    https://www.poetryfoundation.org/poems/44400/spring-and-fall

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #10
    Death denying

    thats what religion is all about - eternal life either in "heaven", "hell" or through reincarnation. Religion is all about fear of becoming non-existent.

  • icrazyhorse
    icrazyhorse Member Posts: 1
    #11
    Follicular Lymphoma CAR-T Patient

    In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of January 16, 2018 she has been in complete remission for 23 months. Clinical trial studies show that CAR-T cells may result in long-lasting remissions for some people who have follicular lymphoma. There is more information on CAR-T for fNHL patients and people considering CAR-T at https://fnhlben.wordpress.com/

  • Pavlin86
    Pavlin86 Member Posts: 1
    #12
    Follicular lymphoma

    On Apr 6th 2017 at age of 30  I was diagnosed with  follicular lymphoma Stage 4, I did 6 cycles of bendamustine/rituximab on the first treatment day I almost died on the chair I did only 3 of the cycles with rituximab the doctor discover that I'm super allergic to it and they dont wanted to risk any more the lymphoma did not go away completely. All the lymphynodes went down but today 3 months after my last treatment I noticed swall lymph nodes near my groin so I dont know what this mean and also I have had feel pain under my tail area when I sit in the car wonder if anyone experience this 

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