Results of Oncologist Appointment Today


I discussed a number of things with my oncologist today.  I asked him if there is a limit to the number of times I would be able to have chemo in the future should my cancer return.  He said there isn't.  He said he's had patients who haven't been able to handle a second regimen, yet others who have had chemo 8-10 times.   It depends upon what reserves each person's body has.  Then he told me there is a pill that has just been approved by the FDA, and I would be a good candidate for it now that I've been through my second chemo regimen.  It's a parp inhibitor called Zujela (or Niraparib).  I just googled it quickly, and it has a lot of really bad side effects, but I guess they're preferable to dying with a recurrence. The website says it's used for ovarian cancer, recurrent peritoneal cancer, and fallopian tube cancer.   

Then I asked him if he knew of any safe hair dyes.  He told me he thought the risks of cancer causing hair dyes have been overrated, and I should just use whatever I want to use.  I told him about the fact that hairdressers have higher rates of bladder cancer than other people, but that didn't seem to sway him. 

I discussed my hemochromatosis and whether my increased ferritin levels might have caused my cancer.  I mentioned that another person on this board contacted me wanting to know if I have the same genetic mutations as she does (two of her four are due to iron, so she asked me recently if I have the same mutations, but I haven't gotten my results yet).  He told me that my GYN/onc. in another hospital hasn't let him know my results yet, but said he doesn't think my increase in ferritin caused my cancer.  He said my numbers weren't high enough for that.  They'd have to have been in the thousands to cause significant organ damage, and my high of 962 back in 2011 when I was found to have hemochromatosis wasn't enough for organ damage.  Last year I craved oranges and I figured the fact that vitamin C makes the body store iron might have caused this year's cancer recurrence, but he didn't think so.  It's not so much that the vitamin C caused the problem as the basic mechanism of the fact that people with hemochromatosis can't get rid of the iron that causes the problem. 

My hemoglobin was down to 9.8 today, not low enough to require another transfusion.  The white blood cells were slightly low, and the platelets were very low at 30,000.  He told me I'd need to get them up to 50,000 before I can have my flu shot and at least 75,000 before I can have my next epidural steroid shot for the herniated disk I have in my back.  I haven't had one since last January, and my back is feeling the strain.  I tried to get one just as I was starting my chemo, but I couldn't have it as my platelets had dropped really low.  The anesthesiologist who does the injection told me to wait until after chemo to get the next one.  Fortunately, the steroids given the day of chemo and the two days after have kept my back from getting too painful most of the time.

I go back again next Wed. and hope to get better results from my blood work then.  He did tell me that my last CA-125 was 9.3 on 9/6.  It had actually gone up from the 7.9 it was back in July, but he thought the slight increase wasn't anything of significance.  I have a PET scan scheduled for Friday of this week, so I'll see what happens with that.  He acted like there was a chance I could need more chemo depending upon what that shows.  I hope not!  I've had enough. 

If I do get put on the parp inhibitor, it looks like I'll need to have very frequent blood work.  With the winter weather approaching, I don't really want to have to make the half hour or more drive to the hospital all the time.  Does this ever end???  I shouldn't complain. I spoke to a woman today who has a 6 year old niece with leukemia.  She's been going thru chemo for 2 years and still has a year left to go.  Poor kid!     


  • Nellasing
    Nellasing Member Posts: 528 Member
    edited September 2017 #2
    Thanks Pinky

    That is a very detailed and interesting update!  We'll be praying for your next blood work and PET results!!  It's ok to not want to drive all that time and wonder if it will ever end- that is a LOT for you to deal with.  Warm thoughts and big ole (((HUGS)))

  • Jairoldi
    Jairoldi Member Posts: 221 Member

    As Nellasing wrote, what a nice and detailed report. Thank you for sharing.

  • Kvdyson
    Kvdyson Member Posts: 790 Member

    Pinky104, thank you for the update. FYI, there have been quite a few posts about Zejula on the Inspire/Ovarian Cancer support group that I follow. You may want to check those out for some real life feedback on how it is currently working for others. Good luck to you on your PET scan and keep us updated on how you're doing. Kim

  • SandyD
    SandyD Member Posts: 130
    Thanks Pinky

    for updating us. Sounds like a lot to absorb. Good luck with your PET scan and hope the results are encouraging.


  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
    edited September 2017 #6
    Thanks, pinky for all your

    Thanks, pinky for all your details!  I remember a particular woman on the Ovarian board here who had been watching the parp inhibitor studies.  I haven't read up on it lately - I thought there was someone here who taken the parp inhibitor but I might be wrong....

  • Sharring
    Sharring Member Posts: 24
    Lots to think about...

    Thank you for sharing your info. Sending prayers for your blood and pet scan results!!  So much to think about....