Very low blood platelets

Sunrise19
Sunrise19 Member Posts: 27 Member

I joined in April and posted as a "newbie" in mid-May. Diagnosed stage 1a, Grade 3 Serous in Nov 2018, hysterectomy Christmas eve, followed by 3 brachy radiation treatments, then scheduled for 6 treats of Carboplatin and Taxol. Completed 3 and had some neuropathy and louder tinnitus, small amout of hearing loss. 

Guess we are all newbies, each with new-to-us experiences. This forum is so valuable. 

The responses that were posted were encouraging and ran the gamut from so many experiences. I continued with #4 and honestly, it didn't seem as bad as # 3 so maybe that was the Neulasta? Then midway until next 5th chemo, overwhelming fatigue set in. After bloodwork, chemo team advised "postpone" due to very low platelets. Went for another bloodwork after a week. Same result, maybe tiny tad better, at least no worse.

Now advised to do another bloodwork, next week. Also will have checkup on the same day. If levels too low, no chemo, they say. If improved, I can discuss with them. IF TOO LOW, after reading more posts, I will ask about more time before continuing, substitute types of chemo, spacing the chemo to lower doses, cutting out the carboplatin (which is causing probably causing the low platellets), or just stopping at 4 treatments.

They will also monitor for Thrombocytopenia. As we know, the side effects are real, including much fatigue.

Please know that without your posts I would not know the detailed questions to ask.

Thanks!

Comments

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    Fatigue

    It's true, the side effects are real. I trust they will have a solid plan to move forward with your treatment. I don't have the experience of low platelets so have no advice but plenty of well wishes for you.

  • Sunrise19
    Sunrise19 Member Posts: 27 Member
    Jairoldi said:

    Fatigue

    It's true, the side effects are real. I trust they will have a solid plan to move forward with your treatment. I don't have the experience of low platelets so have no advice but plenty of well wishes for you.

    Thank you Jairoldi.

    Thank you Jairoldi.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    Sunrise, I had trouble with

    Sunrise, I had trouble with low platelets, partly because I for an unknown reason (unrelated to my uterine serous/clear cell cancer) have an enlarged spleen that was probably sequestering platelets, before I began chemo.  Mine was about 150K before chemo, and dropped with each round. After the 3rd round, I had to have chemo every 4 weeks instead of every 3rd.

    How low are your platelets?  There's a difference between platelets that are low (say, 50 -80 K) from carboplatin causing bone marrow toxicity, and platelets that are REALLY low, like in the single digits, which is likely an autoimmune reaction.

    It's not that unusual to have to stretch the chemo interval out to every 4 weeks.  Also, radiation treatment affects bone marrow's ability to produce cells, so it is understandable that you might have worse thrombocytopenia from chemo after having had radiation treatment first.

    I finished all my treatments (surgery, then 6 rounds chemo, then 28 rounds external pelvic radiation) about two weeks ago, and I feel just GREAT now.  SO much better.  Hang in there.  You will be done with chemo soon, and you start to get  better about two weeks after the last infusion.  And after that you have a good prognosis, since you were a 1a.  There is light, and life, at the end of the tunnel.

  • Sunrise19
    Sunrise19 Member Posts: 27 Member
    edited May 2019 #5
    Glad you point that out cause

    Glad you point that out cause the last test showed 67,000, up a bit from the previous week. So this coming week will be a 5 week stretch, so will see the hopefully better number. I notice that if I go beyond 2 hours for a low carb munch, my fatigue is worse. 

    So good that you feel Great in such a short time! Yes, I'll hang in cause although 1a, grade 3. I see a good article on CBD in today's NYTimes. It says that it has helped some chemo side effects, for some. But that is another post!

    Thank You and have a good Day, the Present!

     

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    Sunrise, there's one other

    Sunrise, there's one other thing. When my low platelets were delaying chemo, I read some studies that indicated that melatonin might increase platelet count.  I tried it, but it didn't do a thing for me - neither helped with sleep, nor did it seem to increase my platelet count.

  • Sunrise19
    Sunrise19 Member Posts: 27 Member
    zsazsa1 said:

    Sunrise, there's one other

    Sunrise, there's one other thing. When my low platelets were delaying chemo, I read some studies that indicated that melatonin might increase platelet count.  I tried it, but it didn't do a thing for me - neither helped with sleep, nor did it seem to increase my platelet count.

    Hi Zsazsa1,

    Hi Zsazsa1,

    Yes, somewhere I read that too! And, melatonin does help me sleep so I upped it a bit, and will see for this next bloodwork, this week. One of my doctors on Team, treats and also does Ovarian Cancer surgery. She explained that there are not as many uterine cancer serous (and other ) stats (and also not for when the treatment ends early or is teaked) for this cancer as there are for the "larger" uterine and ovarian cancer studies. And my guess? is that the funding and #'s are lower so the studies go to the more common types? AC Soc  says basically the same, but as we know, use the Ovarian protocol for treatment, cause it's the same cell. 

    Anyway, I'm finding that all uterine cancer  patients with aggressive cell types are encouraged to finish the standard AC Soc protocol until  side effect prohibit.(that might be the gray area). Will see soon what the bloodwork shows. No matter the results (unless the #'s bounced back to my normal) I will see if it can be adjusted, by interval, and/or of other chemo, cause the effects forme, so far, have been neuropathy, tinnittus and a bit of hearing loss increase, and plstelet fatigue, immunity and all blood #'s down. And, I know from this forum that some have had Much Worse! And will ask how this impacts future outcome, but wil probably be told "it's an unkown, no reliable studies and no stats kept for ending early". Hard to believe, but AC Soc nurse says same.

    And I'll force sleep since my normal is 4-6 hours, to see if there is some reduction in fatigue. I read that NYTimes article recently and yes, sleep is hard to come by, for some of us. 

    Thank You!