Follow up doctor visits

onlytoday
onlytoday Member Posts: 609 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

After diagnosis and treatment how often did you see your oncologist?

 If in a partial remission for awhile (9 years) what do your visits consist of?

Blood work,scans, exams?

 

Just curious what others have experienced.

My oncologist has not done one scan in the 3 years i've known him, does a cbc but this time wants no blood work!

I moved to a new state 3 years ago so he is new to me and does everything differently than my previous oncologists.

I have terrible fatigue and lots of gerd.

Had an endoscope last year and gastro increased medicine but still have bad heartburn.

Have you ever asked your oncologist for bloodwork or a scan?

 

I'm not feeling comfortable with his style.

Comments

  • Evarista
    Evarista Member Posts: 336 Member
    #2

    I am just 4 years out from finishing DA-R-EPOCH for aggressive DLBCL.  My last PET scan was Sept, 2018 (~the 1.5 year mark).  Since then, I have blood work every 3 months, see my PA once a year and my hem-oncologist once a year.  Those 2 visits are staggered so that I see one of them every 6 months in conjunction with a blood draw. The blood work includes a CBC and full chemistry panel supplemented with LDH, and a few other things (potassium?)

    Whether we continue on this schedule forever, I do not know.

  • EllenChristian
    EllenChristian Member Posts: 4 Member
    #3

    I am newly diagnosed with DLBCL that is located in my abdomen mostly. I have competed my first IP stay @ 6 days and will be every 3 weeks for a few months. Did you notice any side effects during your R-EPOCH treatments? Nothing tastes good and digestive and gastro issues currently. The Mass was cut down to where I couldn't see any longer after this 1st round. I Praise God for this - and it's good to hear you are in remission. God is Good

  • Unbreakable1
    Unbreakable1 Member Posts: 14 Member
    #4
    https://csn.cancer.org/discussion/comment/1691286#Comment_1691286

    I had 6 treatments of R-EPOCH. My last treatment was in the beginning of August. I had a hard time after my first chemo treatment. I dont think I had gastro issues, but I did not have an appetite at all after the first round. I lost 10lbs, my face had dark spots, neuropathy in my finger tips and toes which by now are pretty much gone. I was not tired and had a time sleeping. My hair is growing. I believe It put me into menopause (I am 43yoa). The hot flashes drive me crazy.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited January 2022 #5

    OnlyToday,

    My oncology group uses differing protocols, depending on the cancer, strain, etc.

    Because my HL is highly given to relapse, I at first visited every three months, after one year, once every six months for a few more years, and then I was transferred to a 'Lifetime Followship Program' run by the group, for patients who are long-term in CR. I know that I had at least one CT after CR, either at 6 mo or one year, but it may have been two CTs. After the two-year clean date, I received no more scans, getting a CBC, and metabolic blood draw each time, along with a touch exam. If you feel that a CBC would make you more comfortable, do ask for it. The LDH Test is expensive, but LDH results have high priority for medical oncologists watching for potential relapse. I have had severe GERD for decades, and I am unaware of it being linked to any form of Lymphoma. It is your money.... I cannot imagine an oncologist refusing or questioning you in requesting these tests.

    max

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