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Thread: Follicular Lymphoma

  1. #21
    Senior User
    Join Date
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    Tn
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    I had a chronic cough for years before I was diagnosed. Like 30 years. The doctor said there was no way the cancer caused the cough and it would be a medical first for someone to have cancer that long. I think the cancer waxes and wanes. Since the treatments the cough is gone. The coughing would start then my throat would become sore from all the coughing and lead to more coughing. Only strong meds would help. Now I use local raw honey to soothe the cough and keep lots of vitamin C handy.
    Age 52
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  2. #22
    This Fatigue is really getting me down now. Power naps several times per day is how I get through a day. About to start a new job after not working for three months and don't even know how I will get through a week. Specialist did say they can start treatment if the fatigue is really bothering me. It's all a bit confusing as they also say they prefer to wait until treatment is really necessary.

    Has anyone else been in this position and if so what did to do ?

    Thank you in advance.

  3. #23
    Senior User
    Join Date
    Feb 2011
    Location
    Monroe, WA, USA
    Posts
    452
    Your fatigue will only get worse by waiting. What criteria are you and your doctor using as the trigger to start treatment? What do they mean by "really necessary?" Organ failure?

    There's really no need for you to be suffering - severe fatigue is an excellent reason to be starting treatment.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  4. #24
    Quote Originally Posted by Defens View Post
    Your fatigue will only get worse by waiting. What criteria are you and your doctor using as the trigger to start treatment? What do they mean by "really necessary?" Organ failure?

    There's really no need for you to be suffering - severe fatigue is an excellent reason to be starting treatment.

    Specialist mentioned they like to keep the treatment for when they really need it and I think that means when I move from stage 3 to 4 . He did say they could start treatment if I say I'm over the fatigue, I suppose I'm worried I may be turning to treatment too early and when I really need it.....it will not be as successful. Perhaps I have it wrong as this is all very new to me. I have also heard that the treatment causes fatigue so again it's a bit confusing.

    Thank you for you're reply...appreciate it

  5. #25
    Re my Fatigue.....a bit of lightbulb moment. I had a heart stent fitted 15months ago 40mg Crestor everyday and my research reveals it can cause fatigue and muscle aches. Now I am thinking I should go off the Crestor to see if my fatigue continues or improves to try and pinpoint the fatigue to Crestor or NHL.

    Will chat with GP and no doubt check my Cholesterol etc. who knows Crestor may Be causing me Issues now I have the NHL diagnosis and fatigue issues.

  6. #26
    Administrator Top User Kermica's Avatar
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    Down Under, definitely review your situation with your cardiologist before stopping the Crestor. I would think one of the dependencies is the rate of buildup in your arteries, which the Crestor is helping to minimize, of course.

    As far as fatigue, for the eight plus years I have been dealing with this disease, it is the single biggest issue for me on a daily basis. I have tried to pay attention to my body and to rest when it says "rest". It is a big part of why I went on disability when I started B+R in 2013. I don't now what kind of work you do but I was fortunate to be able to work from my home. I was a regional sales rep for a large software company and they were incredibly supportive when travel became an issue for me. My Director flew all over the Northeast to see my customers when I was unable to do so. I see you are starting a new job - is it with a new company or is it a move within the same one? If the latter, I would gauge the support available to you and reveal things based on your assessment. If a new company, I don't have much input for you other than to be judicious in what and when you reveal the facts of your situation.

    Good luck with all of it and I will be looking for how things go for you.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.

  7. #27
    Quote Originally Posted by Kermica View Post
    Down Under, definitely review your situation with your cardiologist before stopping the Crestor. I would think one of the dependencies is the rate of buildup in your arteries, which the Crestor is helping to minimize, of course.

    As far as fatigue, for the eight plus years I have been dealing with this disease, it is the single biggest issue for me on a daily basis. I have tried to pay attention to my body and to rest when it says "rest". It is a big part of why I went on disability when I started B+R in 2013. I don't now what kind of work you do but I was fortunate to be able to work from my home. I was a regional sales rep for a large software company and they were incredibly supportive when travel became an issue for me. My Director flew all over the Northeast to see my customers when I was unable to do so. I see you are starting a new job - is it with a new company or is it a move within the same one? If the latter, I would gauge the support available to you and reveal things based on your assessment. If a new company, I don't have much input for you other than to be judicious in what and when you reveal the facts of your situation.

    Good luck with all of it and I will be looking for how things go for you.

    Good health,

    kermica

    Thank you ��

    The fatigue is as you say .....awful. Yesterday cancelled all plans and stayed indoors feeling too tired to do anything. Last week specialists told me they could start treatment for the fatigue but lots of side effects and about 18weeks of chemo etc. fatigue is my only real symptom, my bloods are good so I would be going through all of that for fatigue only. I have a couple of weeks to consider but leaning towards NO treatment at this stage.

    Offered a new job yesterday but have no idea how I would handle all the travelling as some days I'm too tired to get dressed so it's all a bit of a mess at the moment as like many others I need to work.

    Apparently the treatment will eventually fix the fatigue ? But the the treatment and side effects sound bad.

  8. #28
    Administrator Top User Kermica's Avatar
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    Apparently the treatment will eventually fix the fatigue ? But the the treatment and side effects sound bad.
    Hmmm, what is the treatment they are proposing, Down Under? Fatigue is a side effect of most chemo regimens so I am a bit confused. Regarding Watch and Wait, I have done that off and on for about six of the eight years I have been dealing with this. Chronic fatigue is attributed to both the lymphoma and the treatments I have had.

    Good health,

    kermica
    Last edited by Kermica; 01-15-2017 at 01:50 PM.

  9. #29
    Quote Originally Posted by Kermica View Post
    Hmmm, what is the treatment they are proposing, Down Under? Fatigue is a side effect of most chemo regimens so I am a bit confused. Regarding Watch and Wait, I have done that off and on for about six of the eight years I have been dealing with this. Chronic disease is attributed to both the lymphoma and the treatments I have had.

    Good health,

    kermica

    Hi Kermica

    Chemo and another drug I believe.

    Possible hair loss
    Sickness
    Susceptible to infections
    Possibility of secondary Cancers

    Cheers

  10. #30
    Ok. So apparently I need months of Rituxamin and Bendamustine ...sorry if I have not spelled them correctly.

    Would welcome any feedback on this regime as I Have not yet discussed with Doctor.

    Thank you

 

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