• Postponed and/or interrupted infusions due to Bad blood counts and other issues.

    Asked by SueRae1 on Friday, December 7, 2012

    Postponed and/or interrupted infusions due to Bad blood counts and other issues.

    Yesterday was the 4th time since I started my latest chemo regime in July that my insusion was canceled the cycle it's two weeks on one week off
    Week 1: Gemcitabine, Carboplatin, and Avistan
    Week 2: Gemcitabine, Carboplatin

    The first two times it was due to bad 'white cell counts" - which has successfully been treated with neuporgen.

    Two weeks ago I missed an infusion because of Severe anemia my hemoglobin count was 8. I received a pint of blood and a shot of blood build building meds.

    Yesterday I was sent home because I have Bronchitis and my platelets and temp were borderline.

    I know this treatment is working because my last two scans - in Sept and right before Thanksgiving indicate that my lesions are shrinking. and my cancers have not spread beyond my liver.

    How do you deal with the disruptions in your chemo schedule. I find that I get really upset, and feel like i can't plan anything, and have no control over my life anymore.

    14 Answers from the Community

    14 answers
    • Harry's Avatar

      I had that happen to me. And I found it very annoying. I understood the reason (low white cell count) but was not pleased with the way it came about. Nobody told me there was a problem until after I took the day off work, was sitting in the chemo chair, and the nurse came up and said I was already cancelled. I was even less happy when I was told by the lab that they couldn't let me see my lab results directly because of privacy laws!? How does privacy prevent them from telling me my own results?

      There is a tendency in the medical community to assume that all patients have unlimited time on their hands. I certainly understand that treatment is important, but so is work and family. I actually had a person in a medical office tell me this week that of course I could get to an appointment at a very disruptive time because the law required my employer to let me go. I doubt that law applies to an employer with as few employees as the place where I work. I have to work with my employer, not against him.

      And now I'm venting. :-)

      almost 4 years ago
    • nancyjac's Avatar

      I hear ya. I only had one postponement of a scheduled chemo treatment but it was pretty significant. I had sudden and severe edemo which not only postponed chemo but require a whole other round of tests looking for a blood clot or heart problem. In the end, it turned to be nothing serious and chemo was resumed, but it sure did upset my apple cart!

      I think it is particularly maddening and scary for cancer patients because just having cancer already causes such an upheaval of planning, control, and schedule. Having a set schedule of cancer treatments and know what to expect when gives us at least a semblance of control, so when even that is suddenly over turned, it become chaos all over again. Usually, when some like that happens to me (whether cancer related or not), I initially get mad but then get over it. The initial anger lets me vent and then getting over it reminds me that most of time life is messy and it just is what it is.

      almost 4 years ago
    • ticklingcancer's Avatar

      I had one round canceled because of low RBC. My whites were low as well but high enough that we could have started. The way Texas Oncology works is the day of my chemo, I get blood work. The results are reviewed within minutes by my Dr. He had to sign off of my chemo for the week. You have to remember that when they cancel a treatment, it for a very good reason. My Doctor flat out told me, if we went ahead with treatment that week, I'd be in the hospital in a matter of days. I thanked him for canceling it. He assured it that it would have no effect on the progress of my treatment. Could they have told me before I took the week off? Sure!! But I didn't think it was that big of a deal. I went home, changed clothes and worked that week.

      almost 4 years ago
    • Harry's Avatar

      Oh, I know. I understand that it would be dangerous to proceed. My problem was more in the way I was cut out of the loop and the fact that I seem to be the only one in the whole hospital who can't access my own records quickly and easily. I have a general problem with being treated like a number on a lab sheet and not as a person. And, of course, I'm always looking for a fight. :-)

      almost 4 years ago
    • packerbacker's Avatar

      SueRae, I can totally relate to you about missing treatments due to low counts. I recently missed at least 4 out of 6 chemo treatments. I was upset, too. But, like ticklingcancer said, if you got treatment, you could easily end up in the hospital. I know that I don't want to end up there! I hate, though, that your day is "scheduled," and you make arrangements to be there, and that ends up being for nothing, or so it seems. The doctor was able to get valuable information regarding my treatment and changed doses so I could get the chemo more regularly at a different dose.

      Harry, we shouldn't be getting test results from lab personnel or the people that do our other tests. They don't have the answers like why? or now what? And, anyone could say they are you and get results! As a nurse, I can't give test results, and I don't want to, because I won't have all the answers to the patients' questions, and it's the doctor's responsibility to discuss things and plan accordingly.

      almost 4 years ago
    • Harry's Avatar

      Dear PackerBacker,

      I didn't want answers from the lab, just the results. I'm a scientist (not a doctor) and I know how to read reports and how not to interpret them without the expertise I don't have. I go to my oncologist for interpretations. Nor did I want the lab to give out my results to anyone who called in. These days we can transfer money between banks over the internet using passwords and secure links. If banks can trust the system (and I do know about hackers), then I don't see why the hospital lab can't. They must already have such a system so that the nurse who requested and received my records could do that. She could have been anyone, but they had a way of checking her ID. I should be part of it for my records only. I doubt there are so many people like me that it would be a burden on the lab. Of course, I can, and did, eventually get the results from my oncologist, but it would have been nice to have them ahead of time so that I could prepare a bit more for the changes.

      Yes, I know, there are lots of patients who don't understand what they are reading and might freak out over the words. Heck, from what I've seen here there seem to be some doctors who don't completely understand those reports. I'm not saying you are wrong. It's just that I was upset that the lab totally stonewalled me. They're my records and I ought to be the first, not the last, to have access to them.

      Besides, if I were reasonable, what would I have to fight about? :-)

      almost 4 years ago
    • Sugarshine's Avatar

      Harry, like you I want to know what's going on with me. I talked to my oncologist and he wrote the order for the lab to release the reports to me also. I always get the interpretations of it from him but I do understand what the labs mean as I am a RN.

      almost 4 years ago
    • leepenn's Avatar

      I got kicked out of chemo three times... out of 16 cycles. So, not that bad, in retrospect. But, at the time, it was sooooo hard. I thought I'd have my last treatment BEFORE classes started up again in spring semester. Instead, the delays meant that I had my last treatment during the first week of classes, which meant I had a TERRIBLE second week of classes... I remember crying the third time I got delayed... I was so upset.

      And I don't think that it's a matter of understanding that we have lives and that our work and families are important... I think it's a matter of getting the treatment done in the safest way possible... but that everyone responds a bit differently... so making real predictions is tough, at best. Me - my blood counts took a hard hit with the first 12 weeks of chemo. The last four cycles of AC - I was super anemic - borderline transfusion... managed to escape with no delays and no transfusion.... PHEW! Wow - it was soooo stressful. And, from what I understand, it's unusual for people to finish exactly on schedule.

      I don't know if that helps. I definitely felt similarly as to what you've described - upset - lack of control - couldn't plan anything... spot on.

      almost 4 years ago
    • SpunkyS's Avatar

      Yup, those feelings are familiar to me. I had the goal date of when I should be finished with chemo. Several cancellations later I stopped setting the date and just went with day to day.
      Most invites were accepted with "if my counts are ok".
      Wish I had known that was the usual going into chemo.
      When I finally accepted I had no control of the blood stuff I tried to make the cancellations fun.
      I promised not to use the chemo bay hall as a bowling alley. I promised not to dance on the nurses' desk if they would just let me have chemo.
      In the end I tried to think of something I could do that would be an "upper" when chemo was cancelled. It helped emotionally.

      almost 4 years ago
    • gwendolyn's Avatar

      Incredibly frustrating. You actually don't have much control over your life right now, so your feeling that way is entirely appropriate. I think you should go to the infusion center each time with a Plan A (get infusion) and a Plan B (can't get infusion so I will go to the movies, get a mango smoothie, or whatever you might consider a treat for yourself.

      almost 4 years ago
    • Harry's Avatar

      In my case, the scheduling complication was a trip to Japan to see our daughter. Because of the way things are done in Japan, the only real choices were a week in August when things would be too hot, Christmas when the daughter was coming to visit us, and "Golden Week" which is a time of festivals during the first week in May. We chose Golden Week and had tickets etc. My chemo should have been over well before that. Then I got delayed. As I told my oncologist, if the choice was between chemo and Japan, Japan won. My oncologist said he was bummed because he wanted to come, too. As things happened, I never got as far as a May chemo because of a severe reaction to the April chemo. Japan was great. This was a couple of months after the earthquake and tsunami but my daughter lives in an area that wasn't affected.

      Yes, I know it is done for our protection. I was more upset at the way things were handled than at what was done.

      almost 4 years ago
    • Ydnar2xer's Avatar

      I am so sorry about your delays...I spent a week in the hospital before Thanksgiving and received 2 pints of blood, so they delayed one of my treatments. I can only do that once more before it will mess up our trip reservations, so I do worry about that. It's terribly frustrating that you can't even be in charge of the scheduling of your treatments...but please know we sympathize with you.

      almost 4 years ago
    • Lirasgirl33's Avatar

      Oh man....delays are frustrating. I mean come on, as we go through treatment you know we all mark down on our calendars our chemo days, treatments, labs, and even days we know we'll feel like poo. We then schedule our lives around all this. Delays means lots of cancelling plans, moving stuff around. I totally feel where you're coming from. Been there myself. There really isn't much I can do about it. There have been times I felt fine and was told I couldn't get chemo, too dangerous with such low counts. I just shrug it off, and move on. I mean I try to maintain a healthy diet but there is really nothing I can do about what's going on inside me. I trust my doctor and if he says no to treatment, then I trust there is a bigger danger to me if I do get treatment.

      almost 4 years ago
    • MarnieC's Avatar

      Dear SueRae, I am sorry you're having such a tough time right now! I remember having one of my chemo treatments postponed and like you, it upset me too. I found that I just needed to be gentle with myself. I know it's hard to plan things, but hopefully this won't last forever. Giving up control of our lives - even if for a short time - can be exceedingly hard to do. Here are some suggestions to help you de-stress: http://marnieclark.com/stress-hits-an-all-time-high-heres-some-relief/ Sending hugs. Take a deep breath - you will get through this.

      almost 4 years ago

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