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Thread: Is this normal? Slow treatment.

  1. #1
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    Is this normal? Slow treatment.

    My father in law was disgnosed with "cancer" around thanksgiving. From this starting point it's seemed like the doctors didn't care at all.

    He was admitted to the er that day for tests to see what stage etc. He sat for 3 days being told "today you'll get a test done" only to be left and never see the doctor again all day. It took his primary care doctor to travel to the hospital and ask how the tests went, to find none had been preformed, to get someone on it.
    So we wait 5 days after to hear back, eventually calling ourselves instead of waiting any longer. They tell us it's stage 4 and he has a year or so to live possibly longer if treatment went well. We were devastated but ready to get treatment started. They however weren't. They scheduled his next appointment for a week later. This appointment just to talk about treatment. Throughout the next 2 week no treatment was done and multiple appointments were canceled by the hospital.

    Finally he got everything ready and was going to start radiation until the VA called and told him all treatment had to stop and be done at their offices 1.5 hours away. The VA didn't seem to care any more than the other doctors. After one appointment telling us "if you don't hear from us in 2 weeks give us a call". I just don't understand how almost a month after diagnosis no one seems to want to help. He's been in a lot of pain the whole time just waiting.
    He had to say screw the VA for now and stayed at the hospital, though he couldn't really afford it, for radiation since they were ready to go. Once the VA was ready they would do chemo.
    So he had radiation for 7days and they told us there seemed to be no effect. They are unsure if the cancer is going as fast as it's being shrunk or if it's just not working yet. So they opened the radiation for him specially on a Sunday to get extra treatment to hopefully have the mass go down in size and help his pain, that is until they cancelled that appointment and his next normal monday one because their single machine broke.

    So after 6 weeks of being sick and miserably in pain he has had one week of treatment with multiple cancellations and having to call hospitals for results instead of the other way around. We're desperate for something to help him be in less pain. Is this a normal experience with doctors? I feel I've always heard cancer treatment started fast with hardly any time to process even the diagnosis not an endless waiting by the phone game.
    On the plus side the VA is supposed to see us Wednesday so maybe chemo can start soon.

  2. #2
    What state and city does your father live in??
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  3. #3
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    Quote Originally Posted by Dead Man Walking View Post
    What state and city does your father live in??
    Flushing Michigan.

  4. #4

  5. #5
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    Quote Originally Posted by lisa1962 View Post
    Tyoe of cancer?
    Throat but its spread to lungs and lymph nodes

  6. #6
    Dear Em123: To answer your question, yes, it seems very out of place to be diagnosed with AML and then have the doctors twiddle their thumbs. I re-read your post, and then I saw the answer to my question: This is VA medical care. The terms FUBAR and BOHICA are certainly relevant, and you need some sort of advocate to try and get this sorted out. I have no idea how the VA system works, but in a lot of cases the VA will sit on its butt until the possibility of bad publicity rears its ugly head, and then they start scurrying around. You might want to look into some sort of veterans group to see what support they can offer.

    Best wishes you get this sorted out, DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  7. #7
    Moderator Senior User IndyLou's Avatar
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    Jan 2014
    Posts
    405
    I agree with Dead Man Walking. If this is any indication of how the VA system works, I pray that we never get to a point of government-run healthcare in this country. If you have any other options besides VA care, I would pursue them at once.

    Obviously, we don't know your father's full diagnostic makeup, but following a diagnosis and staging, you should immediately go to a discussion of treatment. For this type of cancer, that should be an appointment at the oncologist's office. They will describe the treatment, answer questions, and the patient will sign a consent to be treated form.

    Depending on the type of cancer, a patient may then have to attend some preparation visits. These may occur over a period of a few days, or maybe a week. They might perform some more precise scans, insert ports, feeding tubes, or fit the patient for a radiation mask. Again, the timeframe is days, possibly a week or two at the most, followed by treatment.

    You, or possibly your father, need to get a little more firm and insistent with your caregivers. While I don't know the specific type of cancer, there should be effective treatment options available (assuming they're not using older forms of chemo). Although care doesn't have to start "yesterday," it should start soon. These repeated cancellations and re-scheduled appointment that don't lead to a logical progression of treatment are frustrating, and don't help the situation.

    Again, if you can receive healthcare from someplace other than the VA, I would encourage you to do that. If not, you (or your father) must stand up against their bureaucracy and demand to be treated. Consider involving your Congressman, if needed. I wish you and your father well.
    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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