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Thread: Newly Diagnosed with Follicular Lymphoma

  1. #11
    My wife and I talked about it last night. She says she definitely wants to know and be involved in all of my appointments and anything I learn here on the forum, and elsewhere, so she can help me through this. She says it's all a little overwhelming right now. She's the love of my life. I'm grateful to have such good support from her and my family.

  2. #12
    Senior User
    Join Date
    Nov 2014
    Posts
    242
    I am pleased that you and your wife have had a discussion! My husband used to and still does say that he can't even imagine what I felt and experienced. At times, totally inadequate, fearful of losing his wife of 45 years. if only he knew at those times what it meant to me when he just touched me. In hindsight I was a bit hesitant to talk how I felt without fear of upsetting him! I had never been a person who could accept help, I'll be OK, thank you anyway....I soon learnt that I did need help at times and it could not always be Jon.
    One thing that I am sure helped me was having a short term and achievable goal. Mine was a bit way out there, a painting workshop in Italy that had already been booked. I treated it as a "will happen" and worked towards it.
    Let your Wife know that it is OK to worry, feel sad, anxious and at times even depressed. Encourage her to talk about it with you and the rest of the family.
    Cheers Heather
    68 yo "lady" reasonably fit except for chronic cluster headaches
    October 2014 Developed lumps in skin on chest wall 4 within week, 1 on top of leg
    Body scan showed only the 5 lesions, later PET scan showed more but all skin related.
    Full fresh biopsy of first lesion: non Hodgkin Lymphoma: Diffuse large B-Cell Lymphoma with high Ki-67 prol index >95%. Final diagnosis: Primary cutaneous diffuse large B cell lymphoma leg type. Bone marrow biopsy clear. No double hit.
    Treatment R CHOP x6
    17 March 2015 CAT and PET scan clear REMISSION!
    2 sessions IV Methotrexate to augment R CHOP.
    11 April 2015 all treatment complete
    August 2015 First check up Bloods all OK no scans needed
    October 2015 "lumps" bloods OK! Ultrasound show lipomas, otherwise all clear.
    March 2016, 69 now, 1 year remission!
    May 2016, official 12 month check, bloods good, new lumps....watch and wait...happy as!

  3. #13
    Regular User
    Join Date
    Jan 2016
    Posts
    22
    I can't offer much information on your specific diagnosis, but being resently diagnosed myself with NHL DLBCL stage IV, I have found this site not only informative, but comforting as well. I hate that we have to welcome you, but I'm glad you found the site.

    Keep us updated and know you have our support.
    Female - age 49
    12/29/15 diagnosed with NHL DLBCL Stage IV
    Main mass on Vertebrae T9,T10,T11. Other involvement on L2, Left shoulder blade, 9th rib, and in both shoulders.
    1/4/16 started R-Chop (18 weeks)
    1/13/16 Intrathecal Infusion X4 (every 3 weeks) (delayed due to fever)
    1/20/16 Intrathecal Infusions rescheduled.
    Intrathecal Injection complete/Testing of spinal fluid negative for cancer cells.
    1/25/16 2nd round of R-Chop
    2/8/16 PET Scan shows great progress
    2/15/16 3rd R-Chop
    2/16/16 2nd Methatrexate Injection
    3/7/16 4th round of R-Chop
    3/8/16 3rd Methotrexate Injection
    3/14/16 PET Scan- Stable exam, without convincing scintigraphic evidence for FDG-avid malignancy.
    3/28/16 5th R-CHOP
    3/29/16 4th Methotrexate Injection (final)
    4/18/16 6th R-Chop (Final)
    Radiation Therapy to start week of May 2, 2016
    20 rounds of radiation to Thoracic vertebrae and Lumbar
    Completed radiation on May 31, 2016
    Next scan in September 2016

  4. #14
    Thanks to everyone here. My wife and I will be meeting with my radiation oncologist, Dr. Barry Chauser, tomorrow AM. He will be reviewing my CT scan and pathology reports and I suspect he will order a PET scan. We plan to discuss treatment options and scheduling.

    Are there any questions I should be asking?
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

  5. #15
    Moderator Top User
    Join Date
    Feb 2011
    Posts
    598
    Sure, there are plenty of things to know:

    - Actual diagnosis - is it confirmed as follicular?
    - Grade (I, II, IIIa or IIIb) - basically the aggressiveness of the disease
    - Stage (1, 2, 3, or 4) - how widespread is it, all located in one basic spot, or more widely spread. Keep in mind that this is far less important for lymphoma than for other cancers that can metastasize. Since lymphoma is a blood-borne cancer, it is typical for it to show up in widely separated parts of the body.
    - Has the diagnosis (biopsy) been confirmed by more than one pathologist? Is it certain, or should a second opinion on diagnosis be made? Important for treatment selection.
    - Is a bone biopsy planned?
    - What's the recommended treatment?
    - What alternatives to the recommended treatment are there?
    - Are there any promising clinical trials that might be considered?
    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
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  6. #16
    Mixed meeting with the radiology oncologist yesterday. We spent about 90 minutes meeting with him and his staff to review my pathology reports and examine me. He seemed perplexed that I'm not showing any "normal" effects of NHCL and my blood work is fine. He agrees with the diagnosis of fillicular lymphoma, based on the biopsy pathology report and the fact that the findings were confirmed by two pathology doctors. He ordered a PET scan and we talked about treatment. He said that most patients start with chemo and mop up with radiology, as Defens suggested above. He referred me to a medical oncologist to direct and manage my therapy. So it sounds like I was referred to the wrong doctor by my general surgeon. I was heartened to hear him say that he believes my NHCL is curable, not just manageable.

    I have an appointment to meet the medical oncologist on Friday. I'm super happy to find that all of these doctors are covered by my insurance and are in network. It's hard enough going through this without dealing with insurance issues.
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

  7. #17
    Moderator Top User
    Join Date
    Feb 2011
    Posts
    598
    Hmmm. Actually it's pretty uncommon for follicular patients to have radiation after chemo. Your type of case - single tumor, grade 1, would be one of the rare exceptions, and the intent would definitely be to cure you. I hope it works!
    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
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  8. #18
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    I agree with Defens on this. I was originally diagnosed fNHL, Grade 1-2, Stage 1. The first treatment I had was 20 rounds of radiation and the intent was curative as the numbers indicated that up to 50% of cases like mine are cured through radiation. Bad for me, the docs found a second lesion on the followup PET scan in a different lymph chain which made me Stage 2. We agreed to have another go with 20 more rounds of radiation, again with curative intent and a 30% chance of success. Some literature today says that this path is out of favor compared to combination therapy as has been proposed for you.

    The numbers didn't work out for me and I have now also had 6 rounds of Bendamustine and Rituxan combination therapy. This put me into remission about 18 months ago. I am thinking, in your case, that the abdominal tumor is large which is why they want to go with chemo first and mopup radiation afterward. I would be asking for specific rationale on the path identified as one thing that we need to understand as fNHL patients is that the disease does tend to recur and we need to be aware of what tools we have already used if it comes back as we may not be able to use them again. For example, I startled on Rituxan maintenance after my B+R therapy and had to stop as the Rituxan was causing side effects that were damaging to my lungs. This means that Rituxan is off of my list of tools for the next time the beast raises its ugly head.

    I think it is important for we fNHL patients to understand that we are on a journey because we have a chronic disease. We are not in a dogfight as my aggressive and t cell friends here are, we have the luxury of time to make decisions and to ensure that wee have considered all of our options. Here are a couple of good articles that may be of help in deciding what questions you want to be asking as you go forward, good luck with everything.

    http://www.jhoonline.org/content/6/1/45

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3459616/

    https://www.urmc.rochester.edu/news/...-lymphoma.aspx

    Good health,

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

    Age 67
    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.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  9. #19
    You guys and gals are great. What a wealth of information you provide. Thank you!

    I'll be meeting with Dr. Robert Weber, hematologist/oncologist, tomorrow and have a bunch of great questions. It's nice to hear that we have the luxury of time to make informed decisions. My mind is swimming with all the new information I've learned since my diagnosis.

    As a newbie I'd like to share an iOS app I found, Focus on Lymphoma. It gives a good overview of all types of lymphomas, treatments, side effects, etc. and has some nice tools for taking notes, recording conversations, meds, etc.

    The radiation oncologist I met who ordered the PET scan says that the insurance company is reviewing the order. I understand these are pricey tests, but I hope it doesn't hold things up or is a sign of things to come from them.
    Last edited by luckyguy; 01-22-2016 at 01:48 AM.
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

  10. #20
    It's been a little while since I last posted and wanted to share what's happening. I had a PET scan on 2/5/2016 that revealed a few additional areas of concern. One 1.6cm area to the right of my 16.2cm tumor on the left, and an area of suspicion in my right neck that may be normal.

    Since I now know that I don't have a single localized tumor and the fact that I have bulky disease, I'm not a candidate for first-line radiology therapy and a potential cure. My oncologist is recommending 4-6 courses of Bendamustine and Rituximab therapy with a follow up PET scan, then radiation when the tumor reduces to around 5cm. My doctor has been great and takes the time to answer all my questions. There is only one clinical trial available at Stanford Medical Center, but it's a phase 1b/2 trial which I don't think open to doing. I'd be interested to know what you think.

    My oncologist suggested that I go to Stanford for a second opinion about therapy. He thinks it's a good idea to confirm this course of treatment and whether or not they think I should have a bone marrow biopsy (the PET showed no evidence of activity there). In the meantime, he is seeking preauthorization from my insurance company for B & R therapy which I may start in the next few weeks. I would start with one full course of just Bendamustine, then a B & R combination for the duration. A course consists of two consecutive days, 90 minutes each, per month. He gave me handouts about the possible side effects for both drugs, but I'm interested to know what your experience is with this therapy.
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

 

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