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Thread: New cancer patient joining the fight!

  1. #1
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    New cancer patient joining the fight!

    Hello everybody!
    53 year old healthy male.
    Wish I wasn't here but I am.
    April 8, 2016
    Squamous cell carcinoma in my right neck lymph, right tonsil, left side back of tongue.
    Recently married to a woman than I have been waiting a lifetime for
    We will all will win our fights and prosper! Amen!

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi there, bgrams and welcome to the place no one wants to be but many come to value. I am sorry you have reason to join us, of course. I assume your doctors are planning surgery to get the cancer out, yes? Do they speak of followup radiation or is the treatment to be surgery only? I don't know a lot about internal squamous cell, mine has been of the skin cancer variety.

    I wish you well and hope that treatment is both effective and without complications. I think you will find folks here to be supportive and, when they can be, informative. Let us know how things go and I will be sending good thoughts your way.

    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.

  3. #3
    Moderator Senior User IndyLou's Avatar
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    Hello, bgrams...welcome to the forum, though I'm sorry you have to be here under these circumstances. Would you mind sharing an update on what you've been though--your symptoms, diagnostic tests, meetings with doctors, and your plans for treatment?

    I went through the same cancer myself--my first treatment was just over 3 years ago to the day. The first year was rough for me in terms of treatment and recovery, but the good news is that the prognosis is excellent for these kinds of cancers. You should be able to count on a long life with your new bride!

    Feel free to ask any questions about treatment options and tips for getting through--we're here to help.

  4. #4
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    Quote Originally Posted by bgrams View Post
    Hello everybody!
    53 year old healthy male.
    Wish I wasn't here but I am.
    April 8, 2016
    Squamous cell carcinoma in my right neck lymph, right tonsil, left side back of tongue.
    Recently married to a woman than I have been waiting a lifetime for
    We will all will win our fights and prosper! Amen!
    Im brand new also diagnosed with same cancer....have met with radiation oncologist waiting on apt with oncologist for Chemo...im 57

  5. #5
    Moderator Senior User IndyLou's Avatar
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    Hello, rremt. Welcome too, though I'm sorry you have to be here under the circumstances. What kind of treatment will you be receiving? Do you have any questions or concerns? I'm happy to help.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  6. #6
    Newbie Regular User
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    Hi forum
    ENT surgery on 8/2/2016 for cancer found below right ear in various lymph nodes. Started as skin issue on my right ear. Dug it out and found squamous cancer which they cleaned out, grafted some skin and I went back to golf. Then lumps began to puff up under the ear.
    Was sent to a Encologist who had a CAT Scan done. Results were negative. No issues. I almost dropped this issue but Encologist suggested a visit with an ENT Surgeon. He said CAT Scans were not best indicator and order Pet Scan and biopsy. Biopsy was "inconclusive". Pet Scan indicated the nodes were lighting up brightly apparently cancer. My question is, "is surgery first the only option"?
    Chasisme

    PSA 1/29/13 3.55
    3/25/14 4.76
    12/04/14 6.61

    Biopsy performed 11/21/2014
    Adenocarcinoma in 1,2,3,4,5,6,7,8,9,10,11,12
    Highest Gleason 3 + 4 = 7
    Highest PTI 80%
    Sample 9 also showed "perineural invasion'
    All samples had Adenocarcinoma

    Left Lateral Base 3 + 3 = 6 10%
    Left lateral Mid " 50
    Left Lateral Apex " 50
    Left Base " 30
    Left Mid " 05
    Left Apex " 65 + perineural invasion
    Right Base " 50
    Right Mid " 80
    Right Apex 3 + 4 = 7 40
    Right Lat Base 3 4 7 70
    Right Lat Mid 3 3 6 10
    Right Lat Apex 3 3 6 10
    Right Base 3 + 3 + 6 50%

  7. #7
    Moderator Senior User IndyLou's Avatar
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    Quote Originally Posted by chasisme View Post
    Pet Scan indicated the nodes were lighting up brightly apparently cancer. My question is, "is surgery first the only option"?
    It really depends on the staging and location of the cancer. Many (maybe most) cancer treatments in the US--certainly head & neck cancers--are guided by specific protocols issued by the NIH-funded National Cancer Institute. For Stage I and II cancers, surgery and radiotherapy are the primary treatment options. Of course, surgery depends on having enough room to work without damaging surrounding areas. There are a lot of nerves and muscles running through the neck and jaw areas, and you don't want to injure those while removing a tumor. Still, if your H&N cancer can be removed successfully with surgery, it's by far the best treatment option in terms of avoiding longer-term side effects.

    You seem to be unsure or uncertain of surgery as a treatment option. Do you have other concerns?
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

 

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