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Thread: New Dx of FNHL, 6/10/19

  1. #31
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    Hello,
    So sorry to hear things are emotionally hard for you. When my husband was diagnosed I was just shaken to the core. I thought Cancer meant death. Not true, just read some of these forums and you see Warriors and people full of life and info. This is the place to ask questions. I do have hindsight and can give some advise. One day at a time or one hour at a time or just minute by minute. It will pass. I agree going for a walk, the gym, something that gets your endorphins up will be good for you in many ways. As for friends.... you will find true friendship now. Someone told me this and I thought they were nuts. They were right. Don't be mad at those that go missing in action, just realize it is who they are in a crisis. We thought of cancer as a battle. We surrounded ourselves with those who wanted to help and ignored all the rest. As for your spouse. Maybe walks together. You need a United front. My husband survived stage 4 Difussed large B cell lymphoma 5 years now. He was diagnosed last year with follicular lymphoma and we are dealing with it. Sometimes we don't even think about it for a full day. Just part of our lives. Are we happy with it ? NO!! Will we deal with it? YES!!!! United front. You can do fun things and still live life. Trust me.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  2. #32
    Regular User
    Join Date
    May 2019
    Posts
    34

    Your advice needed

    Hi all,

    Even though my PET scan was completely negative and Iím Stage 1, I have had persistent itching at night and it is getting worse. It might be the recently increased lamictal (for trigeminal neuralgia) but Iíve been on that before with no itching. There are no other obvious causes (Iím a doctor so I know everything, ha) Itís much worse at night and keeps me up for hours.

    I also have milder nightsweats around once per week

    Iím wondering if anyone else has had this after entering remission. Or even without remission: what has helped you with itching?

    Iím other news the reality has hit me. Iím not a great candidate for rads, so relapse at some point is probably in the cards. I know I need to get over this phase spiritually, but for now Iím numb. And itís hard to get support. Spouse can hear only so much; he needs a break! And being morbid and sad will ultimately drive away even close friends. So pending my spiritual epiphany Iím turning to this site for connectedness.
    Male, 58
    Dx 6/10/19: low grade follicular lymphoma with MiB-1 =30.
    LDH 178 (normal). Stage TBD.

  3. #33
    Senior User
    Join Date
    Mar 2017
    Posts
    199
    Hi Jim,

    I am sorry to find your symptoms have not completely subsided at this point.

    Just a couple of remarks/suggestions - and I hope they can help:

    - Have you considered that you have been through considerable stress these past few months, and are still today struggling with the news of your diagnosis? Could the nighttime itching then be cortisol-level related?

    - Have you tried an antihistamine to see if it helps bring it down? For the six years leading up to my diagnosis, I had full-blown outbreaks of hives, and was prescribed fast-dissolving Ebastine tablets to manage that. As I am sure you well know, Ebastine doesn't cause any drowsiness (not in my case, anyhow) but there are other antihistamines that also serve the purpose of alleviating anxiety and inducing sleep.

    - A longer-term approach to your issues that is worth considering could be your taking up a type of activity that favours contemplation, such as yoga. It works wonders for stress-related symptoms and the emotional distress which we are prone to when faced with a cancer diagnosis. It can also be part of a more global lifestyle change or adjustment that is recommended for cancer patients. And, if your spouse is willing to try it along with you, all the better.

    - Regarding the notion of relapse looming over you like a sword of Damocles, well, it's just that once you have such a diagnosis, you cannot just forget about it and pretend you're eternal - that's all. It helps to remember that an indolent lymphoma is a sloth and that it could very well remain dormant for years. Plus, now that you do have a diagnosis, you are not alone with this: periodic follow-up should help make sure that any surge in activity is nipped in the bud.

    Finally, and though I know it is easier said than done, take a deep breath and smile! it's been proven effective against the blues, and it makes relationships easier.

    Kind regards,

    PBL
    Last edited by PBL; 08-30-2019 at 01:15 PM.
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  4. #34
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,581
    Hi Jiminipdx. I am going to try and comment about how one (well, this one) manages the emotional roller coaster we call fNHL. I have been on this ride for 11 years now and, for e, find the greatest serenity in acceptance. We know that there are all sorts of treatment options for us depending on grade, stage, previous treatments, etc...so that is a rock we can grab on to when in doubt. In my case, they hve not been very successful (the jury is still out on my stem cell transplant but I remain hopeful).

    The trick, I believe is to take things literally one day at a time. If one succumbs to the "what ifs" (and they are always lurking in our brain) then life becomes an anxiety ridden projection of the future. For me, today is pretty good, I am feeling blessed because my daughter had a pretty serious car accident yesterday but only the vehicles were damaged, not the drivers. That makes for a prettty good day, even if there is a mess to clean up.

    When I project forward, I rty to make sure that it is the positive thoughts that get my focus and energy. For example, if this transplant fails, I know there are still alternatives (like CAR-T) so the game will not be over even if this doesn't work (like the other five treatments didn't). I also try to plan for things that I want to do instead of being held captive by my disease. For example, I have had some trouble getting my immune system to stabilize but we are making progress. So, I have labs scheduled this week, then again along with a doctor visit two weeks after that. If all is well, my wifgfe and I will be cleared for a vacation. We will have to stay within a day's drive of Boston just in case but that leaves lots of choices for destinations. So, life is good.

    I don't mean to sound like everything is sweetness and light in my life because it is not. The transplant recovery has been hard and up and down. Since I can't depend on my immune system yet, I cancelled my attendance at my 50th high school reunion, which I did want to attend. All of that said, life is still good even with the adjustments I have had to make to live it as a person with a chronic and, sometimes, life threatening disease. It certainly beats the alternative.

    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.

  5. #35
    Regular User
    Join Date
    May 2019
    Posts
    34

    In keeping with the wisdom of PBL and Kermica

    Great article from NY Times on resilience in the face of cancer.

    https://www.nytimes.com/2019/08/31/w...-nordland.html
    Male, 58
    Dx 6/10/19: low grade follicular lymphoma with MiB-1 =30.
    LDH 178 (normal). Stage TBD.

  6. #36
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    I must say that Kermica is full of great advise. He walks the walk. Day to day.
    As for the itch, I getbit. Husband had this before, during and after. It comes and goes. I keep a calendar and when the Rich shows up I put it on the calendar, if a night sweat shows up I put it on the calendar. I notice that being over tired or run down or maybe a medicle procedure such as skin cancer freezes brings on itch. It mostly happens on the tops of his feet. He just gets up and ices them down. If his back or torso has a flare up we use clobetasol propionate cream 0.05%. Like you it is always at night. His will just suddenly be gone like it suddenly appears. So we just deal with it when it shows. I hope all this info is helping, I know it helped me on this forum when I needed it.
    Get outside and go for a walk of you can, it just does something for you positive.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  7. #37
    Regular User
    Join Date
    May 2019
    Posts
    34
    I work in a group of around 20 people. One coworker has CLL, anotherís child had leukemia and a third personís spouse had a bone marrow transplant. Each of us has gotten a lot of support from the Lymphoma and Leukemia Society, so we are going to give back by participating in the annual walkathon next month. Weíre hoping to raise a few thousand dollars, and more importantly, to get most of our teammates to join us.

    This being Portland, it will most likely rain, there will be face painting and funny costumes, and the evening will end with gluten free pizza and vegan beer. So if youíre in town on October 12, join us!

    Cheers

  8. #38
    Regular User
    Join Date
    May 2019
    Posts
    34

    (Mildly) interesting panel discussion about follicular lymphoma

    A panel discussion on future directions. Nothing earth shattering but interesting Enjoy

    https://www.onclive.com/peer-exchang...cular-lymphoma
    Male, 58
    Dx 6/10/19: low grade follicular lymphoma with MiB-1 =30.
    LDH 178 (normal). Stage TBD.

 

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