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Thread: Follicular Lymphoma for a while now

  1. #1861
    Senior User
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    Hey, glad to see your still kicking cancers a double s. Reading your treatment history is like reading a case journal from a medical study. I seriously think you could write a heck of a book. Throw in a few self help words of support and wisdom and you might sell a few copies. I agree it is targeted to a small group if you use nhfl in the title, so it might be better if it had a catchy title and empowering message as the General theme and splashes of cause and affect thrown in to sell. A blurb in the Times and your top of the best seller list. I have bought at least a half a dozen such books myself after reading a review. It might give you something to do on rainy fall/winter days. I want my copy autographed.

    Anyway, you know I have insomnia and decided to just drop by and say hey. All is good here. But very hot and humid.

  2. #1862
    Senior User Kimv's Avatar
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    Dec 2015
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    Chico, ca
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    Hi Kermica, I, glad to hear you are celebrating life on a daily basis! Block parties are a lot of fun....and having Blues Travelor is the cherry on the cake. Please let us know the outcome of the CT scan. I am thinking of you and sending you and your loved ones big virtual hugs! xoxoxo xox k
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  3. #1863
    Top User David52's Avatar
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    Location
    Central Wyoming
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    Kerm.....must be the week for scans. My Pet/ct is Tuesday....results show on Wednesday. This just never gets easier, for me anyway. Hang in there

    David
    65 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  4. #1864
    Super Moderator Top User Baz10's Avatar
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    K,
    you know only too well my philosophy positivity one day at a time and pal you are way ahead of me on this.
    Forget who said, "frightened to die and to terrified to live".
    or words to this effect.
    You and I don't fit into either of the above.
    Life is for living and live it we shall.
    Thoughts are with you.
    Baz
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #1865
    Administrator Top User Kermica's Avatar
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    Thanks, everyone, I really appreciate the support and uplifting words you have provided to me.

    Things are moving along, I guess. I had my CT scan last Tuesday and will get the results this Tuesday. Based on the number of swollen nodes I can feel (though smaller, thank goodness) I fully expect to be told that we have a partial response and that we will go ahead and do two more treatment rounds and then a PET/CT after that to get a better look at potential internal hot spots.

    Meanwhile the possibility of having PC bothers me a bit. If it turns out to be true, I can only hope that it is of the indolent variety (how many slow growing cancers can a body tolerate?). I will find out in September (on 9/11, actually).

    Finally, it is time to take a trip back to the dermatologist. Three facial lesions for him to examine. Two, I suspect, are not a big deal (he refused to take one off for biopsy back in February as I was in treatment and severely neutrapenic at that point). It has gotten bigger since then but I doubt it is malignant but will leave it to him to judge. The one that worries me is across the bridge of my nose. He has been watching that one since my squamous cell surgery and it now has a scabby line through the center of it that didn't exist a month ago. If we have to biopsy or do Moh's on that one I should look like a three eyed monster when they are done. Oh well, that could be fun when answering the door on Halloween, right? I will call him on Monday.

    All of the above said, Baz was 100% correct when he said:
    Life is for living and live it we shall.
    One of the reasons I have not been posting here as often as in the past is that I am just too darn busy to spend much time at the keyboard...sometimes its even due to fun! Last night was a great dinner out with friends, I just booked us into a lodge in Lake Placid for 5 days next month and the ponies are now running at Saratoga. What more could a living, breathing person ask, lol?

    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.

  6. #1866
    Top User David52's Avatar
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    Central Wyoming
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    Quote Originally Posted by Kermica View Post
    All of the above said, Baz was 100% correct when he said: One of the reasons I have not been posting here as often as in the past is that I am just too darn busy to spend much time at the keyboard...sometimes its even due to fun! Last night was a great dinner out with friends, I just booked us into a lodge in Lake Placid for 5 days next month and the ponies are now running at Saratoga. What more could a living, breathing person ask, lol?

    Good health,

    kermica
    Kerm,

    I think you got it right. 5 days in Lake Placid sounds perfect for an August holiday, and watching the horses at Saratoga sounds pretty good too. Keep on keeping on, Pal. Thinking of you often!

    David
    65 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  7. #1867
    Administrator Top User Kermica's Avatar
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    Jul 2009
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    New York
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    Thanks, David (and all). I got my results this morning and the scan showed further reduction in the nodes. In fact, according to my doc, they are now within normal size range. That said, they are also still palpable. The normal course of treatment with this protocol is six. I had had eight coming into today. We made the decision to continue the plan so I had #9 administered today and will do #10 in three weeks, followed by a PET scan in 6 to 8 weeks.

    My doc agrees that there is still active disease so we are trying to push it as far back as we can by extending the treatment. I am tolerating things well now so that is a plus. When we finish, I will proceed with my plan to lay back for a while to see how things develop. While that is happening, I will continue to research trials and new protocols so I am informed as to options.

    One interesting development today - the patient advocate came over to see us while I was in the chair. The practice is having an offsite weekend meeting in September. It will include the physicians and a select few patients. My wife and I have been invited to attend and we are leaning toward accepting. The program is being put together by the Advocate's office so I don't have many details yet but it looks like it will be a round table discussion of how the practice can better serve the whole patient instead of just treating the disease. This is an area of medicine in which I have a lot of interest so I am looking forward to seeing the agenda and itinerary. If nothing else, it is being held at a great old retreat center in the Adirondacks so it should be a nice weekend getaway.

    I will be happy to be finished with this round of treatment. By the time we finish I will have spent a full six months tied to the regimen, I look forward to being free of it, for a good long while I hope.

    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.

  8. #1868
    Top User
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    Location
    durham UK
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    820
    That sounds as good as it can be given where you are with all your challenges, and continuing does sound like a good decision if it continues to have some effect, which it seems to be and no reason why it should not. Almost like being on a maintenance programme and good that you are tolerating R much better, those quicker treatment sessions make a difference too, especially when it no longer takes all day.

    You will have a lot to contribute to that seminar or consultation group so well worth taking part, especially if its a night or two in a good hotel.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  9. #1869
    Senior User
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    Location
    Monroe, WA, USA
    Posts
    462
    I'm really glad to learn that the nodes are finally responding; continuing the treatment sounds like an excellent plan, while you've still got them on the run.

    I wouldn't worry too much about nodes still being palpable. After I finished treatment and was in full remission, I had nodes that were still reducing in size over a year after treatment ended! Most likely you're seeing (and feeling) a whole lot of necrotic tissue, with a dab of active lymphoma here and there.

    I hope you finish out the treatment in great health and feel great for the retreat/meeting in September.
    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!

  10. #1870
    Senior User Kimv's Avatar
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    Dec 2015
    Location
    Chico, ca
    Posts
    400
    Hi Kerrmica,
    I've been sending you lots of good juju. I think it's working! You must be exhausted but hang in there. When it comes to treating the "whole person" I have been fortunate to be in a small and well organized cancer center. We have a support group, chaplains, music, tv, and employees who really take the time to listen compassionately. I think it is harder for the larger facilities. It will be interesting to hear about your meeting. I'm glad you are taking the time to get away and enjoy life. How is your appetite?
    Continuing the good vibes. xoxoxoxo kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

 

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