Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Postponed chemotherapy

Hey, All!

My dad was diagnosed with Stage IV Splenal Marginal Zone Lymphoma last November and was treated. That cancer transformed into aggressive B cell lymphoma a few months later. (I've been told this happens in 10% of cases.)The doctors in our hometown in Idaho didn't know which signs to look for, so he spent several months getting sicker and experiencing pleural effusions while simultaneously being told he was fine. Finally, he ended in the ICU with sepsis and underwent major surgery to empty out his pleural sac. (All of this was caused by the cancer the doctors here failed to recognize.) During the surgery, they found a tumor.  It was later diagnosed as aggressive lymphoma. He has had one chemo infusion so far. That first infusion appears to have just knocked the cancer on its rear end -- it made a big difference in his ability to breathe and he continues to get stronger every day.

Here's my concern. He is now over a week overdue for his second chemo infusion. It was initially postponed by a week so he could finish a course of PREVENTATIVE intravenous antifungal antibiotics without having to deal with chemo as well. THEN, the day before he was supposed to be infused, the infectious disease doctor thought she may have found shingles on his skin. (He had developed red spots). They biopsied and he was told the labs should take 24-48 hours. Chemo was put off again pending the biopsy results.

That was last Thursday. His spots have not gotten worse, there is still no pain, and there is still no itching. If it is shingles, we could presume that it has not been worse due to the fact that he received the shingles vaccine last year before his cancer symptoms began to appear. Or, it could just be an allergic reaction to some soap my mom used last week.  In any case, he still continues to feel better. The issue?  It has been a full FOUR DAYS since the biopsy was submitted to the lab and, as of today, they still had not received the results. This despite the fact that the doctor put a rush on the test.

I'm scared to death of his next chemo infusion being postponed and postponed because the hospital can't get their stuff together. Does anyone have any experience with this? In my mind, it is utterly unacceptable for a hospital to be aware that a patient has aggressive cancer that needs timely treatment and then be this sluggish in responding to his need to continue chemotherapy.

What makes matters worse: I work at the Mayo Clinic in Rochester, MN, and I've been there when difficult diagnoses/lab test results have come in back in a day, or, sometimes, two. I had a blood draw at the Mayo Clinic just last week that required two lab techs and a molecular analysis. (Completely unrelated to my dad's cancer. Just communicating my frame of reference.) Blood was drawn at 7:30 am and the doctor called me with the full range of results at 5 pm. My dad is a Mayo patient, but he lives in Idaho -- not Minnesota -- and is not keen on travel. This aspect of this experience has been very difficult since I know he would receive much better care in Minnesota.

In any case, I want to know anyone's stories about having their Chemo postponed. Especially if it was postponed more than a week.

I told my dad tonight that, if this happens again, I absolutely think he should move to Minnesota for the duration of his treatment. He really doesn't want to. I am just having a hard time handling the knowledge that he's got a disease that is actively trying to kill him and his docs can't get simple lab results back in a timely way.

 

Comments

  • Sten
    Sten Member Posts: 162
    Should not be too bad

    Hi Liz888,

    I understand your concern about the sluggishness and lack of competence of the hospital.

    However, postponing chemo for some short time should not be too bad in your dad's case.

    I had highly malignant large B cell lymphoma in my cerebellum in 2012. After a few chemo sessions my thrombocytes were low, and the next chemo was postponed for some weeks. Another time when my stem cells were to be collected prior to a high dose chemo followed by an autologous stem cell transplant, my white blood cells were low, and there was a postponement of about one month.

    But the treatments took place a little belated, and they went well. I am now NED (no evidence of disease) since 2 1/2 years and feeling pretty good.

    Good luck!

    Sten

  • Liz888
    Liz888 Member Posts: 14
    Sten said:

    Should not be too bad

    Hi Liz888,

    I understand your concern about the sluggishness and lack of competence of the hospital.

    However, postponing chemo for some short time should not be too bad in your dad's case.

    I had highly malignant large B cell lymphoma in my cerebellum in 2012. After a few chemo sessions my thrombocytes were low, and the next chemo was postponed for some weeks. Another time when my stem cells were to be collected prior to a high dose chemo followed by an autologous stem cell transplant, my white blood cells were low, and there was a postponement of about one month.

    But the treatments took place a little belated, and they went well. I am now NED (no evidence of disease) since 2 1/2 years and feeling pretty good.

    Good luck!

    Sten

    Thanks!

    Hey, Sten!

     

    Thank you so much for your reply. It does help quite a bit to hear stories like yours. Congratulations on your on-going NSD state. Have a wonderful day!

  • Liz888 said:

    Thanks!

    Hey, Sten!

     

    Thank you so much for your reply. It does help quite a bit to hear stories like yours. Congratulations on your on-going NSD state. Have a wonderful day!

    Waiting

    Liz,

    Between huge nodes first being seen on a CT all over my body (from the neck to the pelvic area, and from one underarm to the other) and my first infusion, the wait was over two months.  When I finally met the hematologist I was going to use, he said at the end that my first infusion would be "in two weeks."  I asked if that was problematic, but because I had an indolent form of the disease, he said it would be wholly irrelevant.  (He is Ivy-trained, and has five Board Certifications.)  He added, "If your case warranted it, I would put you in the hospital today and begin treatment in the morning."

    Others have more aggressive strains of lymphoma (there are 40 commonly recognized forms of lymphoma, and each differs somewhat), or have issues such as the breathing problems, which make a faster response necessary.  In fact, I first had a CT because of severe heart pain, which ended up being nodes pressing agains the heart, but the pain only occured once and did not return, so it was not an issue in my case.  Initially the ER diagnosed me as having "unstable angina."  For a strain of lymphoma to morph into another within a few months is odd and rare. I suspect that the initial pathology report was simply wrong.  Otherwise, most patients do not receive additional biopsies while in treatment, so that was perhaps not too egrigious a miss on his doctor's part.  Certainly any board certified oncologist knows when additional pathology work is recommended.

    Lab turnaround varies with the lab.  Generally, a large teaching hospital with in-house facilities will tell you something within one working day, if information that rapid is justified, as in your case at Mayo.  Remote community centers shipping out their lab work can take a lot longer.  Most results at most places today are sent via e-mail, which helps.  I am in the habit of calling the doctor's office and requesting results over the phone as soon as the doctor has had a chance to review them himself.  Virtually all doctors agree to this.  My medical center now even emails results directly to patients in some cases.

    So, the issue of time varies a lot with the nature of the disease, the facilities being used, the health of the patient, ect.  It sounds like his care thus far has involved bad luck more than incompetence.

    A friend has advanced, Stage 4, "triple negative" breast cancer (i.e., "as bad as it gets"; prognosis for remission under 20%).  Her initial chemo was delayed a couple of times as she got second opinions, etc. I have known a lot of people on chemo who had delays for a variety of reasons, some as simple as a holiday.  She recently travelled to MD Anderson while in mid-treatment for some socondary advice, relateing to surgery she was about to have. Ergo, delays are almost the norm rather than the exception. And the more complex the case, the more delays.  Very simple cases proceed with less course correction.

    I wish your dad a full recovery. Most lymphoma patients achieve as much,

     

    max

  • Liz888
    Liz888 Member Posts: 14

    Waiting

    Liz,

    Between huge nodes first being seen on a CT all over my body (from the neck to the pelvic area, and from one underarm to the other) and my first infusion, the wait was over two months.  When I finally met the hematologist I was going to use, he said at the end that my first infusion would be "in two weeks."  I asked if that was problematic, but because I had an indolent form of the disease, he said it would be wholly irrelevant.  (He is Ivy-trained, and has five Board Certifications.)  He added, "If your case warranted it, I would put you in the hospital today and begin treatment in the morning."

    Others have more aggressive strains of lymphoma (there are 40 commonly recognized forms of lymphoma, and each differs somewhat), or have issues such as the breathing problems, which make a faster response necessary.  In fact, I first had a CT because of severe heart pain, which ended up being nodes pressing agains the heart, but the pain only occured once and did not return, so it was not an issue in my case.  Initially the ER diagnosed me as having "unstable angina."  For a strain of lymphoma to morph into another within a few months is odd and rare. I suspect that the initial pathology report was simply wrong.  Otherwise, most patients do not receive additional biopsies while in treatment, so that was perhaps not too egrigious a miss on his doctor's part.  Certainly any board certified oncologist knows when additional pathology work is recommended.

    Lab turnaround varies with the lab.  Generally, a large teaching hospital with in-house facilities will tell you something within one working day, if information that rapid is justified, as in your case at Mayo.  Remote community centers shipping out their lab work can take a lot longer.  Most results at most places today are sent via e-mail, which helps.  I am in the habit of calling the doctor's office and requesting results over the phone as soon as the doctor has had a chance to review them himself.  Virtually all doctors agree to this.  My medical center now even emails results directly to patients in some cases.

    So, the issue of time varies a lot with the nature of the disease, the facilities being used, the health of the patient, ect.  It sounds like his care thus far has involved bad luck more than incompetence.

    A friend has advanced, Stage 4, "triple negative" breast cancer (i.e., "as bad as it gets"; prognosis for remission under 20%).  Her initial chemo was delayed a couple of times as she got second opinions, etc. I have known a lot of people on chemo who had delays for a variety of reasons, some as simple as a holiday.  She recently travelled to MD Anderson while in mid-treatment for some socondary advice, relateing to surgery she was about to have. Ergo, delays are almost the norm rather than the exception. And the more complex the case, the more delays.  Very simple cases proceed with less course correction.

    I wish your dad a full recovery. Most lymphoma patients achieve as much,

     

    max

    Thanks!

    Dear Max,

    "Lab turnaround varies with the lab.  Generally, a large teaching hospital with in-house facilities will tell you something within one working day, if information that rapid is justified, as in your case at Mayo.  Remote community centers shipping out their lab work can take a lot longer. "

    I think you hit the nail on the head here. When my dad first went to Mayo last October-- after the hospital in Boise could not diagnose after 6 weeks and a series of tests that each took 6 days to return with results-- Mayo had his lymphoma diagnosed within four days. Mayo has more than one in-house lab and, when a Mayo doctor sends in a sample for analysis, the simple fact is that stuff gets *done.* Mayo has access to those kind of resources. The same was true when they found cancer the second time. The lab in Boise simply could not identify what sort of cancer it was. It wasn't until they sent the sample to Mayo that it got diagnosed, although that took over a week. I'm learning that in-house labs get results much much faster than mail-in labs do, even if that mail-in lab is at the Mayo Clinic.

    And, in somewhere between 1 and 10% of cases (I've read different statistics), SMZL does transform into aggressive Diffuse B Cell Lymphoma.  My boyfriend's boss -- a Mayo hematologist -- told me point blank that this kind of transformation is not uncommon. What he may have meant is that, in his experience as a Mayo doctor, this sort of transformation is not uncommon. Mayo sees all the specialized, complicated cases, though. So, that stands to reason if that's what he meant. That said, both he, my dad's Mayo hematologist/oncologist, and the oncologists in Idaho are all very optimistic about their ability to throw this into remission. It's just an emotional response -- there's something killing my dad and it feels like his doctors are sitting in the outfield making daisy chains. Makes me want to pull my hair out then throw my dad into my suitcase and take him back to Minnesota with me.


    Thanks for your post, though. I need to hear they're not killing him by taking so long.  Day 5 draws to a close tonight and there are still no results. Results look likely tomorrow, though.


     

  • Liz888 said:

    Thanks!

    Dear Max,

    "Lab turnaround varies with the lab.  Generally, a large teaching hospital with in-house facilities will tell you something within one working day, if information that rapid is justified, as in your case at Mayo.  Remote community centers shipping out their lab work can take a lot longer. "

    I think you hit the nail on the head here. When my dad first went to Mayo last October-- after the hospital in Boise could not diagnose after 6 weeks and a series of tests that each took 6 days to return with results-- Mayo had his lymphoma diagnosed within four days. Mayo has more than one in-house lab and, when a Mayo doctor sends in a sample for analysis, the simple fact is that stuff gets *done.* Mayo has access to those kind of resources. The same was true when they found cancer the second time. The lab in Boise simply could not identify what sort of cancer it was. It wasn't until they sent the sample to Mayo that it got diagnosed, although that took over a week. I'm learning that in-house labs get results much much faster than mail-in labs do, even if that mail-in lab is at the Mayo Clinic.

    And, in somewhere between 1 and 10% of cases (I've read different statistics), SMZL does transform into aggressive Diffuse B Cell Lymphoma.  My boyfriend's boss -- a Mayo hematologist -- told me point blank that this kind of transformation is not uncommon. What he may have meant is that, in his experience as a Mayo doctor, this sort of transformation is not uncommon. Mayo sees all the specialized, complicated cases, though. So, that stands to reason if that's what he meant. That said, both he, my dad's Mayo hematologist/oncologist, and the oncologists in Idaho are all very optimistic about their ability to throw this into remission. It's just an emotional response -- there's something killing my dad and it feels like his doctors are sitting in the outfield making daisy chains. Makes me want to pull my hair out then throw my dad into my suitcase and take him back to Minnesota with me.


    Thanks for your post, though. I need to hear they're not killing him by taking so long.  Day 5 draws to a close tonight and there are still no results. Results look likely tomorrow, though.


     

    On track

    You are obviously very well informed and will continue to be a guidepost for your dad. 

    Good luck with the results, and I hope they arrive today.  But nearly all strains of lymphoma have good prognosis.  My own indolent strain of HL has a 10-15% relapse rate, which is considered very high, but I view it as a 90% chance that it will not relapse.   Many lymphomas, when they do relapse, often come back as a more virulent (aggressive) form, so that too is common.  And lymphoma morphing into its sister disease, leukemia, happens too.

    Luckily, most patients never see relapse or leukemia.

     

    max

  • Scharfschutze15
    Scharfschutze15 Member Posts: 12
    Hi Liz,it's not uncommon for

    Hi Liz,

    it's not uncommon for an oncological finding biopsy to take 7-10 days to proces, due to additional testing on tissue. Normal turnaround should be 2-3 days, outside this. Unfortunately, smaller regional hospitals can be slower on this sort of thing.

    As for bloodwork, that should be returnable within 1-2 hours at an oncology unit where the values are critical to evaluating a patient's ability to undergo treatment. Certainly 24 hrs should be reasonable outside that scenario, for more standard processes.

    Never experienced chemo being postponed, except by the patient when they needed a break. However, my wife (who underwent chemo for NHL) was told taking a week off between sessions was likely not a major risk, short of showing significant symptoms. Sometimes chemo patients need an extra week between sessions to recover enough, both in terms of blood levels and just emotionally. I wouldn't panic if your dad misses a few days from his scheduled session but more than a week might be considered a problem if he starts showing symptoms.

    Certainly sounds like he'd be better served at a major cancer center - I know my wife was, after leaving our small provincial hospital, but I can also understand why he doesn't want to leave home at this hard time.