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Thread: Follicular Lymphoma for a while now

  1. #1
    Administrator Top User Kermica's Avatar
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    Follicular Lymphoma for a while now

    Hi, everybody! I was diagnosed in Sept 2008 with Stage 4 Follicular NHL. This was based on bone marrow involvement. Because the report said "suggestive of lymphoma" instead of "definitive for lymphoma" I went to Sloane-Kettering for a 2nd opinion. They said, no, you are Stage 1 and recommended localized radiation and talked of a cure. I had the first course of 20 treatments and went for my scan and "surprise" here is another spot of localized involvement so we want to use radiation on that one too. (now I am Stage 2, I'm waiting for one of them to say Stage 3 so I can complete the hat trick). I said okay so went through my next 20 rounds of radiation. Meanwhile my medical oncologist is saying "watch and wait" but my research says that this is becoming old school. So, I agreed to wait for my next scheduled scan which is on July 20. I have a bunch of new lumps so expect a negative outcome. If that occurs, I will see what my med onc has to say but I am leaning toward finding a new doc who will be more aggressive with chemo and monoclonal antibodies if I still have active disease. The challenge is that, with an indolent NHL, there is a good chance that neither choice is particularly good for extending my life from what the research indicates. However, for me, when faced with this situation, it was and is very important that I be in charge of my choices. I think I am achieving that by becoming educated and by insisting that my medical team make me a full member of the decision making process. Challenge your caregivers to validate their recommendations so that you have the informed basis for making the decisions that will determine both the length and quality of your life. I am going to continue doing this because among other benefits, it provides me with the sense that, despite this awful situation I have been handed, I am still in charge of my life. To me, that is very important in maintaining my positive outlook. Good luck to everyone and may the treatment you endure be both less traumatic than you anticipated and more successful than you hoped for!
    Last edited by Kermica; 10-08-2015 at 08:37 PM.

  2. #2
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    I agree with everything you said. Please visit the thread I started entitled:

    Treating Asymptomatic Indolent Follicular NHL?

    I also have indolent follicular lymphoma and there is alot of different viewpoints as to how to treat it. But with it being indolent, you can take your time and not have to rush into things.

    Please visit this website and watch the podcasts; perhaps you already have. These influenced my decision immensly:


    http://www.lymphoma.org/site/pp.asp?...ImE&b=1574367#

    Good luck.

    Don
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

  3. #3
    Administrator Top User Kermica's Avatar
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    Hi, Don, thanks for getting back to me, I appreciate it. Yes, I have watched the podcasts and found them both informative and useful to me. I am still deciding how aggressive I will be with my medical team following the next scan on the 20th. btw, do you or anyone else out there know the clinical difference between C/T and PET/CT scans? I seem to be reading that C/T is sufficient for diagnostic purposes with Follicular NHL but I have consistently had PET scans followed by contrast C/T if there is a questionable result.

    How is the treatment going? I hope you are tolerating things well.

    I seem to remember from another post that you were in the Marine Corps (or do I have you mixed up with someone else)? I spent 9 years on active duty which, between exposure to radiation (I was a radar tech) and solvents may have had something to do with my situation today. Just as an fyi, if you were ever stationed at Camp LeJeune (between 1957 and 1986) you should visit this site www.marines.mil/clsurvey and register for followup information. The government is conducting extensive research into ground water contamination which occurred during that time and which may be contributory to a number of birth defects and diseases including lymphoma. There is a registration site for followup and also a claims center if you are so inclined.

    Cheers...
    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.

  4. #4
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    Hi,

    I chose the R-CVP rather than the more aggressive R-CHOP. Read my posts on Treating Asymptomatic Indolent Follicular Lymphoms. I think I listed the reasons out fairly well. My oncologist gave me the choice.

    Treatments are going very well. I seem to be tolerating them nicely. The only thing I backed out of because of the treatments was driving long distances. Because of the prednisone, drinking lots of fluids and having to make constant, urgent head calls, long driving was misesrable...I did it once and payed for it. So I refused to make a committment for next week, which was to drive someone from Ronald Reagan Airport to Blacksburg, VA...a 5 hour trip.

    The only time I was at the "Swamp" was in 1972 for the Engineer Course and that was only two months. I've been there off and on for TAD trips, but nothing permanent. I don't/can't blame my lymphoma on anything...but I will check out the website.

    The PET scan uses the normal CT scan, but before you go in they inject you with some kind of radioactive sugar solution. As cancer cells thrive on sugar, these "hopped up" sugar molecules go to the cancer. Thus, when they run the CT scan, the cancer cells show up like fireworks. I think that in layman's terms, that pretty well describes it. It is very expensive and there are only two PET scan centers here in the Washington DC area.

    Good luck with your decisions.

    Semper Fi...Don B
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

  5. #5
    Administrator Top User Kermica's Avatar
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    I don't blame my service, Don, but do find the possibility of a causal relationship interesting.

    Your treatment post is excellent background and mirrors a lot of the research I have done to date since I have been at this for a year now. I found the first lump in June of 08 and got formally diagnosed in September. I too had thought that CVP-R makes more sense than CHOP-R to start with FL treatment should the scan show positive. I think not using the silver bullets makes a lot of sense...in fact I have used up the radiation bullet at this point already.

    Your explanation of PET vs C/T makes sense so I guess the next question is why are my docs using PET routinely (I've had 4 of them so far) when it is so much more expensive if it doesn't provide a clinical or diagnostic advantage. I have outstanding health insurance so money has not been an issue for which I am very thankful.

    Anyway, good luck with the rest of your treatment plan. I will update this after I get the scan results but do expect that they are going to measure some progression based on the new lumps under my arm...I am very willing to be wrong, of course!
    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.

  6. #6
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    If your insurance is not fussing about the PET scans, then keep on going with them. Either way, you are still getting the same amount of radiation from the CT Scans...which is another subject.

    Good Luck...DonB
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

  7. #7
    Administrator Top User ChemoMan's Avatar
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    Hi Guys

    The CT scanner in the PET scans gives a lower dose of radiation than a normal CT scan. PET scans also give a much clearer clinical picture. Once a year should be enough with two given during treatment, one half way and the other a month or two after treatment is finished.

    Cheers
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Administrator Top User Kermica's Avatar
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    So, four in a year was a little much,eh? Oh, plus two contrast C/T and a few xrays thrown in for good measure.

    Thanks, Chemoman but somehow I don't think I will hit the once a year track until I have this thing whipped into remission (which I don't think is yet but they will tell me at the end of the month). Right now, if I have new tumors, I am thinking to go the same way as Don with CVP-R. I am also still thinking about getting a new MD as the one I have now has been a little soft on this disease. For example, he states that he has never seen a FL patient transform into DLCBL but all of the literature says that you have a 3% per year probability of having that occur.

    I will be challenging him on this point and some others when I see him at the end of the month. Thanks again to both of you, I appreciate the feedback!
    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.

  9. #9
    Administrator Top User ChemoMan's Avatar
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    Hi Kermica

    Well 4 in the first year of diagnosis is about par for the course for PET scans. That is one that confirms diagnosis, one half way through treatment , one at the end and one 12 months out. After that one per year. Its really up to you how many you have from here on out. You do get a fairly hefty dose of radiation with PET scans, more so with CT scans so the risk of secondary cancers needs to be taken into consideration and weighed against the benefits.

    Cheers and good luck !
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  10. #10
    Senior User
    Join Date
    Mar 2009
    Location
    Northern Virginia
    Posts
    189
    Hi Kermica,

    I see you are driving your oncologist nuts also. It looks like you have read through the thread I started. Anyway, if you have not seen this article it is a good read; it had my oncologist going:

    http://www.molecularonc.com/mor/mor010233.html

    I brought up the subject of too much radiation from CT scans with my oncologist, and he said it would not be a problem unless I lived to 120. However, my GP said that too many CT scans is worrysome; but then he said that I have a disease that could really hurt me...so they need to have the enhanced imaging.

    I see that you live in New York, a liberal State, so you might not have an issue with this, but when you are on Prednisone, your emotions go up and down. There are times when I find screaming at the TV set when watching the news. In Virginia where I live, one is allowed to carry a gun pretty much anywhere. I have a permit to carry a concealed handgun and I regularly carry one with me, especially at night. During Prednisone week however, the ole' "Smith & Wesson" stays home.
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

 

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