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Thread: Diagnosed DLBCL NHL 5/7/18, FISH confirmed double hit (MYC + BCL6 translocation)

  1. #11
    Regular User
    Join Date
    Nov 2017
    Posts
    41
    Quote Originally Posted by deant View Post
    Thank you Jotey! I fight for my girls. You are right, the cancer ward is a modern day coliseum. I didn't think of it in those terms.
    My caregivers are true heroes. I worry about my 64 year old father
    through this, he's stepped up the most, drives long distances,
    does shopping for me, he's just amazing. It should not be this way
    at age 39 for me, I feel I should be taking care of my parents, not
    the other way around. I feel guilty about "coming down" with
    cancer and I'm continually asking myself what I could have done
    differently in my life for me to have avoided cancer. Eating more
    salads, no read meat, becoming vegetarian. I don't know. I feel
    like a burden on my caregivers. Before this, I used to be the
    provider, independent, did all the shopping and hauling of groceries,
    took care of everyone..
    Let caregiver care and help. We are here for it and to support all the way!
    My wifes parent quit job and moved to the UK without knowing any english. They could not endure 3000kms away and without helpping. They/We shared the lows and the highs.
    Let them help you fight this.

    39 is a shit but also can help you fight better.
    Keep it up!!! Fight them and for yourself.

    Take care.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    ... on to follopw ups...

  2. #12
    Senior User
    Join Date
    Jan 2015
    Posts
    218
    I am really impressed with your walking! I used to work on an oncology floor and the patients there would mark on a big board how many laps each day and how far that was. You would have won the big prize for sure! There is nothing you did wrong to get cancer. My brother developed a rare type of lymphoma, and he was in excellent shape - weight-wise, exercised daily, vegetarian, etc.... And is thriving today after 4 years of treatment. I have seen men get angry and give up their gym memberships, and I have seen the healthiest of men and women, and children, and babies, get cancer. Our cells are constantly dividing and dying - any little thing can go wrong and a cell can become cancerous - just think of the number of cells we are talking about! I'm sure Po could give you the number - he is our genius in the group! So don't beat yourself up over that for much longer. It sounds like you have a good support system around you. Consider telling your children if you haven't already. I suspect they already know. Keep in touch with us and let us know how you do with these last cycles. Prayers coming from Virginia from me for you and your family.

  3. #13
    Newbie New User
    Join Date
    Jun 2018
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    3
    Hello everyone, just wanted to post an update. I finished cycle 6 or my R-EPOCH-DA course. I've got two more rounds to go!
    R-EPOCH-DA is working, cancer is not chemorefractory!
    Cycles 1-4 did not have dose escalations. My oncologist was worried that dose escalation would cause tumor lysis since the soft tissue tumor in my hip was massive at the time of diagnosis. His main priority was just to get the soft tissue tumor shrunk down during cycles 1-4.

    The PET-CT scan after cycle 4 showed most of the soft tissue tumor was resolved. The left iliac bone marrow lesion (2-3cm) was resolved.

    The right iliac bone was still showing the same "mottled lesions" as the starting baseline. My oncologist planned to resolve the right iliac bone marrow involvement during cycles 5 and 6. The PET-CT scan also showed that the SUV (standard uptake value) in the affected area had gone to 4. This was a substantial drop since at baseline (before starting treatment) the SUV of the soft tissue was 27.

    For cycle 5 I went through a 20% dose escalation based on the R-EPOCH-DA protocol. (20% more than cycle 4)

    For cycle 6 I went through another 20% dose escalation. (20% more than cycle 5 or 45% more than cycle 4)

    I walked 6 to 9 miles a day during the chemo. This was while getting the vincristine-doxorubicin-etoposide part of the treatment which is four bags of very toxic foul red stuff over the course of four days. Cycle 6 started the Tuesday after Labor Day and ended on the next Sunday. At the end of cycle 6 I had two blood transfusions on that Sunday since my counts were starting to drop on that day.

    After cycle 6, I had two nights of constantly waking up (every hour almost), mild fever, drinking water and urinating. The third night I was able to sleep through the night. My blood counts showed "normal" on the third day.

    Since cycle 3 I've gotten IV hydration for 5 days post-chemotherapy. It has helped keep my BP from dropping and my heart rate from getting too fast. I just completed my last hydration day today (post cycle 6)

    My oncologist is expecting complete resolution of the right iliac bone lesions after cycle 6. My PET-CT scan for this is on Monday 9/17/2018 This will be my third PET-CT scan (my first was before treatment and my second was after cycle 4)

    If there is complete resolution of the right iliac bone lesions after cycle 6, my oncologist will continue with cycles 7 and 8 to kill off any errant cancerous cells. He's told me this is standard. Two extra cycles are always called for when there is NED or resolution on a PET-CT scan during treatment.

    If there is incomplete resolution of the right iliac bone lesions after cycle 6, my oncologist will continue with cycles 7 and 8, but also add on radiation at the end of cycle 8. The radiation is to consolidate and "burn off" and marrow cancerous lesions.

    He's expecting complete resolution at the end of cycle 6 though so hopefully no radiation consolidation will be needed after cycle 8.

    Also, since cycle 3 I've been getting prophylaxis chemo to the brain (methotrexate) through the Ommaya reservoir. All the CNS fluid samples collected for pathology so far have been cancer negative meaning no CNS involvement.

    The limp on my right side is actually starting to correct. The limp is less pronounced and I don't have any pain now when walking. My hip does not hurt and though still weak on the right side I don't have problems lifting my right leg.

    I've lost my eyebrow hair. Still have leg hair.

    Work/Job situation:
    My FMLA period expired at the end of August 2018.
    HR communicated they'll keep me active through the rest of the treatment but:
    1. My job may not be there when I'll complete treatment. My oncologist has given me 3 months as far as completion of treatment / recovery. He's not discussing relapse. His plan is just to deal with the situation in the moment.
    2. If there's a REQ for the job I had when all this started, I may have to reinterview to get it.

    It leaves me in limbo since I'm not sure I can get on COBRA in the event of a relapse if my job won't be there when I've completed treatment.

    There is no safety net in place in the US when it comes to being under 65 years of age and unable to work for 8 months due to cancer treatment.

    The two insurance options that most people going through intensive cancer treatments (that make it impossible to work) are:
    1. If under 65: A spouse who works and is the primary on the health insurance.
    2. If 65 and older: Medicare.
    I don't have these options and I'm terrified of losing my health insurance and relapsing. There would simply be no way I could afford treatment and I'm not even sure I would be admitted. I would love to work post cancer, I've always worked.

    Looking for a job / employability post cancer scares me. I've got an ommaya reservoir (and scar) in my head, bald, no eyebrows, I limp when walking. I think I would get hired based on a phone interview but any offer would be rescinded as soon as an employer would meet me in person. I'm apprehensive about the future. Big challenges ahead. Maybe I should not think about the future and just live in the now. I don't know if I'll relapse, don't know if I'll live or die. Not there yet as far as future job prospects, health insurance concerns. Just focus on beating this beast.

    As far as my kids knowing about my cancer, I would like nothing more than to share my condition with them, have them visit me at the hospital, etc. However, they have monitored visits with their mother (who is bipolar and BPD, rough divorce that took 5 years to resolve) and if they communicated my condition to her she would immediately go to court and petition for custody of the kids. My daughters have just adjusted to "normal" life with me and I can't have them exposed to the chaos and insanity, the walking on eggshells environment in my ex's home.
    Last edited by deant; 09-15-2018 at 04:04 AM.

  4. #14
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,141
    good to see the treatment is working and on that front things look positive, try not to stress about the other issues and take things a day at a time, easy to say and hard to do when minds wander into the what if arena
    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.

  5. #15
    Experienced User
    Join Date
    Sep 2017
    Posts
    80
    Really appreciate you providing this update! And very happy to hear your cancer isn't refractory--a good sign that double hit can be hit right back. My SUVs went from 9.3 (" at innumerable sights" in my mesentery, mediastinum, retroperitoneal, left shoulder) down to zero. So going from a 27 down to a 4 is huge, and I look forward to hearing about the knockout punch that finishes the count for this cancer.

    Good job keeping up those walks--I kept at it until about round 4 RCHOP before I started slowing down. By round 6 I had a long period where I couldn't do more than a loop around the block. And my treatment wasn't nearly as strong as yours. Still, for what it's worth, my chemo ended Nov 30 2017 and I climbed to the summit of Mount Rainier last month--and just returned from a 5 day backpacking trip in the Olympic Mountains. I feel back to normal and you will too very soon.

    Re COBRA, unless your employer cancelled their insurance plan completely there is no reason you shouldn't be eligible to stay on it for up to 18 months--as long as you pay the full burden plus a 2% admin fee. For most this is a tall order as it can take your monthly premium into the $1000 - $1500 range. Still, you might only have a 45-day window to enroll.
    6/2017 - Fell of a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.

 

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