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Thread: Follicular Lymphoma for a while now

  1. #11
    Administrator Top User Kermica's Avatar
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    Hi guys,

    I appreciate the feedback on both scan frequency and chemo side effects. I will keep the prednisone tidbit tucked away for when the time comes. You are right about NY, I don't own any guns at this point and where I live is part of it - too much personal data disclosure is never a good thing and they want lots of it in exchange for a gun permit.

    sorry for the delay in replying to both, I travel in the Northeast and just got back from NYC. I sell software to government so have to go where the customers are...

    be well...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.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

  2. #12
    Administrator Top User Kermica's Avatar
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    Hi to everybody...this is just a note to thank whoever told me that they were getting scan results faster by simply asking. Today, I had a followup PET to confirm that the 5 or 6 new lumps I have are or are not new incident points of my FL (which I cannot help but think they are).

    The procedure went fine and, when completed, I asked the technician how I could expedite getting the results since I am not scheduled to see the oncologist for another 8 days. To my amazement, she said, see the receptionist and they will mail it to you when ready, normally 2 business days. I then asked about getting the disk and she said she would make one for me today and send it out! I thanked her profusely and went on my way (after arranging for the report to be mailed as suggested).

    My point is that by taking charge of your care and becoming your single best advocate for your treatment you can change the much of the experience of dealing with the disease and increase the feeling of being in control of your life and destiny. I have been trying to do that all along but today was a great object lesson to me that I should not miss an opportunity to exercise that control. It is difficult for me to express how much better I feel for having influenced my emotional state and my outcome. One of the really bad parts of this illness is, for me, being at the mercy of the system. Today, I reduced my wait time for results by 60-75% simply by asking and this was a very different experience than when I was first diagnosed and the surgeon who did the biopsy made me wait two weeks for the results for no good reason. My frustration was off the charts as was my negative energy since everyone had already said it was probably lymphoma. I don't know if I was treated differently because I have seen these folks every three months for the past year and have yet to score a positive outcome. It may have been a factor but, either way, the wait time would not have changed if I hadn't asked.

    Now, if I can only figure out a way to ensure the report is negative...

    Cheers, 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.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

  3. #13
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    The Big Picture

    kermica,

    I agree with you that you did speed up the process; but what are you going to do with the results?

    Remember that your PET scans are being read by a Radiologist whom you probably never met and who does not know anything about your medical history.

    The Oncologist however, has seen you face to face, has ordered blood tests, has seen your past medical history and is in a better position to give you the "big picture" of what the imaging results mean.

    But you were probably able to get things from the report, research them and be ready to talk to your oncologist about them.

    This is just a thought.

    Thanks...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

  4. #14
    Administrator Top User Kermica's Avatar
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    Good point, Don...it doesn't really tell me anything except the one thing that is most important to me right now which is: am I in remission or not? When the new lumps appeared about 6 weeks ago, my oncologist was somewhat dismissive and said "let's wait" since the scan is already scheduled. I agreed with him then and do now...

    ...but I am one of those people that want all of the information, greatly prefer that it not be filtered and expect my advisers to be straight with me as long as they work for me. The reason I am thinking of switching oncologists is that this one seems to have one path for Fl which is watch and wait. That is still a valid strategy but I don't perceive that he is considering the rapid changes that are occurring in treating this NHL. In fact, I get the impression that he does not spend a lot of time with NHL, period.

    So, I am thrilled to have the results as soon as I can get them, in an unfiltered form so that I can do research and be in a position to be my #1 advocate from a position of knowledge. It is how I best deal with life so it is surely how I best deal with this challenge in life.

    It is just what works for me, Don...have a good night,

    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.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

  5. #15
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    Prednisone

    I had a great night Kermica,

    I had my 4th R-CVP treatment yesterday and was up until 2:00AM because of the prednisone.

    I didn't want to change your mind, just give you a perspective about radiologists and oncologist and I can see your point. Those CT scans are impossible for me to decipher and I don't even look at them. The radiologist's summary is what make more sense to me...but even then, I don't know what all the words mean.

    I also thought my oncologist was not up to speed on Follicular NHL and used information from this forum to bring things to his attention.

    Have a nice day; I have to take my granddaughter to swim practice. It is very early and the coffee has not finished brewing...AND I NEED LOTS OF IT.
    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

  6. #16
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    As You Consider R-CVP vs R-CHOP

    Kermica,

    Just got back from the oncologist after 3 rounds of R-CVP. While the nodes are going down, they are not going down as fast as he would have liked them to see. So...two more rounds and another reevaluation. If they are not the way he likes them...he may have to do R-CHOP anyway.
    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. #17
    Administrator Top User Kermica's Avatar
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    Don, I am very sorry to hear your news but I hope that running the extra courses of CVP-R gets you where you need to be so that you can save the CHOP-R if it is needed later.

    I have much better news...I got the report from the imaging center when I got back from NYC last night and it is negative...no sign of lymphoma activity. Needless to say, I am very happy about this news and will be staying on watch and wait until it rears its ugly head again. It is a nasty kind of disease, isn't it, Don? I am now in the space you were in following your initial diagnosis, except that I had to have the 40 rounds of radiation to get here. I am hopeful that I can go a solid couple of years before things change again. I know there is a chance that I will stay stable in this state for a long time but also know that that isn't the most likely scenario so will just say thanks for today and every day that follows without a change.

    I really hope your news gets better. My brother in law was diagnosed with tongue cancer shortly after my diagnosis, had surgery and chemo and is back in treatment now after just 3 months. Please let me know if there is anything I can do for you as you go along in treatment, Don. I will be hear to chat if nothing else. Good luck and God bless,

    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.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

  8. #18
    Top User joepet's Avatar
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    Hang in there Don...progress is still a good thing! Even if you need to move up to R-CHOP, it's still not too bad, as many of us here will attest to.

    And congratulations Kermica! As ChemoMan often says, may you enjoy many more trips around the sun.
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  9. #19
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    Thanks...I Feel Better After I Got My Calculator Out

    I did a bit of calculating...and it does not seem so bad:

    I did a bit of calculating and it does not appear too bad. The only one that increased was #1 and the only really big one is #4.

    1. Left Axillary Node (3.4x3.3) from (2.4x3.4) " 34% Increase
    2. Right Axillary Node (2.2x1.5) from (2.1x2.9) - 46% Decrease
    3. Right Intramammary (1.9x1.9) from (4.9x2.7) " 72% Decrease
    4. Right Retrocrural (6.9x5.2) from (7.9x4.2) " No % change
    5. Peripancreatic - 0.8 from 1.2 " 33% Decrease
    6. Pericural Nodes (1.2x0.4) from (0.7x1.7) " 60% Decrease
    7. Retroperitoneal (1.4x1.2) from 1.7x1.6) " 38% Decrease
    8. Left External Iliac (1.1x0.7) from (1.5x1.2) " 57% Decrease
    9. Bilateral Groin (3x0.9) from (3x1.7) " 47% Decrease
    10. Left Groin (1.3x1.6) from (1.7x2.3) " 47% Decrease
    11. Aortic Bifurcation " Resolved from (2.8x1.4)
    12. Right External Iliac " Resolved from (5.7x2.1)

    I think my oncologist is "looking at the glass as half full".
    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

  10. #20
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    Whoops...

    Kermica,

    I am glad that your scans are clean!!! Congratulations.

    Also, I should have said that my oncologist is "seeing the glass as half-empty"...but you know what I mean...I've been on Prednisone all week.

    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

 

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