Skipping rounds of chemotherapy

jontaejones
jontaejones Member Posts: 8 Member
edited January 2018 in Ovarian Cancer #1

So, my girlfriend has late stage ovarian cancer and has 18 chemo treatments to go through. We're through 5.

One week was skipped, and the reason given was 'a break'. This was only relayed to us after they failed to call her with an appointment and she proactively called them.

Then again, after hearing nothing from them, they called back at the last second saying the next week was another 'break'.

No other reason was given other than 'a break'.

I wasn't too worried about it the first time, but now its 2 weeks and I've read everywhere that you have a better chance of survival if you keep the weeks consistent.

She hasn't been reacting badly at all to the Chemo and blood work has been fine. Feeling quite good actually.

What I'm thinking is that the hospital/oncologist either overbooked or forgot, or both, and that is why they skipped the weeks, which ... it boils my blood beyond belief that any well reputed medical center (and this is one of the best) would deprive their patients of the best chance of extended life, but I have LONG known doctors are used to and jaded to their patients dying, and hospitals are a $ making machine, and are overbooked. That's beyond the scope of this post.

But does anybody have any experience with skipping chemo rounds? Being put on hold for no good reason or not being told why? Maybe I'm TOTALLY over-reacting? Still though, this is not like skipping a week of piano lessons. You always want to give the patients the BEST chance for survival. So upset at the system right now. Frown

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    edited January 2018 #2
    First let me say, what a good

    First let me say, what a good friend you are, she is very lucky to have you.  

    There is NO reason to be treated this way.  It is time to step and start DEMANDING a schedule and details.  Unfortunately, because of HIPAA you probably can't do it, but encourage her to start bugging the doctor's office, chemo center, etc...I hate to say the "squeaky wheel gets the grease", but it is true.  I think there are a few of who have had to DEMAND some answer and voice our concerns and then they got the hint they had a 'live' one.  

    This is her life, she has to be her own advocate.  It sounds like she has a good person beside her and she needs that support.  

  • evolo58
    evolo58 Member Posts: 293 Member
    #3
    No. You are NOT overreacting.

    No. You are NOT overreacting. You are, however, not being given the clear, concise information you are requesting, and you and your girlfriend have every right to be concerned.

    There are reasons why doctors and staff may feel a chemo break is warranted. However, if your girfriend's blood work is fine (no major decrease in white cells, for instance), I would think that anyone would be puzzled as to why everything is being halted for no reason obvious to the patient, and it's reeeeeally suspicious when you aren't provided with a good answer. 

    From what my onco nurse told me, a break of a week isn't so bad. I'm really from the uterine board, so I don't know the specifics of ovarian cancer, and I'm sure someone else can help you better. But since things started going beyond a week, I think you two deserve a better explanation. I have been diagnosed at a later stage (no surgery yet ... I'm neoadjuvant, which means at least three sessions of chemo before and at least three sessions after), but I too seem to be coming up against a brick wall when it comes to better explanations of just what certain tests mean, unclear answers from doctors, etc. Your girlfriend is literally fighting for her life, and it's frustrating if your medical team seems that they aren't putting in the same effort. 

    About the best thing I can think of is to politely but firmly persist. Ask questions and keep asking them. Perhaps the nursing onco staff at the infusion station might be of more use than the doctor. I have found that on a few occasions. And I hope your girlfriend finally gets the treatment she needs soon.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited January 2018 #4
    Skipping

    As others have said, this is not at all normal.  Are you in the U.S.?  The only reason I can think of is the severe shortage of IV solution, due to one of the two facilities in the US being out of commission because of the hurricane in Puerto Rico.  I have heard that some patients have to receive their pre-chemo drugs via a very slow injection, rather than through an IV, but the facilities still have enough bags to adminster the chemo drugs themselves.  Possibly your facility's supply ran out, but they sure ought to tell you this and refer you to another clinic where she can receive her chemo.  You definitely deserve answers. 

  • jontaejones
    jontaejones Member Posts: 8 Member
    #5
    The story is that the

    The story is that the oncologist was going through some personal issues and put his patients (or at least us) on 'break' and was incommunicato.

    He is now on leave of absence and we are back on schedule with a new oncologist but missed two weeks. Pretty darn irresponsible if you ask me. *Sigh* I know doctors are people with lives but these particular doctors hold a greater responsibility IMHO.

    In any case, the weeks are gone. Can't get them back. Time to move on. 

  • ginger6044
    ginger6044 Member Posts: 1
    #6
    skipping rounds of chemotherapy

    I also have late stage ovarian cancer, for which I've been treated with chemotherapy at a major cancer center since July 2017. I've had to skip chemo a couple times, first due to a hurricane, and secondly due to a perforated colon with massive pelvic infection. I just wanted to reassure you that I had no disease setbacks due to the skips, and my cancer remained stable (no new growths or spreading), even though the second time, I had to take a 6 week break, as the effects of chemo are cumulative. However, 5 weeks is way too early for a break, and your clinic was wrong to play CYA and come up with the "takine a break" excuse. Plus the chemo orders should have continued as the oncologist isn't needed for that; the nurses do it. Overall, I've found I have to watch the scheduling like a hawk, as that's where they're most likely to drop the ball or mess up. I hear that scheduling messups are common at other hospitals, too, probably because they under staff admin supports when they're trying to cut costs. I agree that cancer patients should not have to put up with this kind of stuff; we're dealing with enough already.

  • Nicm
    Nicm Member Posts: 32 Member
    #7
    Feeling the same frustration.

    Feeling the same frustration. We found out my mom's ca125 levels had increased before thanksgiving, took a month to schedule the biopsy, 2 weeks to get biopsy results, and a week later we've had a PET scan. This Friday we meet with her doctor to talk about the PET scan and treatment options. I am feeling frustrated as well and it helps to read everyone's responses to be our own advocates.

Discussion Boards