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Those platelets!

lovemyhubby
Posts: 27
Joined: Jan 2018

Long time lurker, first time poster. 

My story:

May 2017 laparoscopic surgery.  Local tumor board could not reach consensus on stage and treatment so file was sent to Mayo Clinic for consult.  Staged 3c, grade 1. Left sentinel lymph node and wash were negative but right sentinel node had micrometastatic cells.  Mayo recommended 6 TC chemos and 28 external radiation.

June - Insurance denied doctor recommended PET scan but CT scan was negative.

July-December - Chemo.  Completed Dec. 5 after several delays.

August - hospitalized for 5 days for Neutropenia, (.o5), which resulted in UTI, and thrombocytopenia.  Neulasta shots after further infusions.  Had delays of 1 week. 3 weeks, 2 weeks and 1 week with infusions 3-6 due to low platelet counts.

December 21 - Had chest x-ray after diagnosed with upper respiratory infection and 7 week dry cough.  Was told x-ray was normal by MO but radiologist notes several gray areas not present in June scan. MO thinks they were due to the infection.  I will be asking for followup CT scan as recommended by radiologist.

January 2 - Platelets down to 11.

January 4 - Platelets down to 10, hospitalized for 3 days and given transfusion.  Twelve hours after transfusion platelets up to 78.  Down to 48 on the 6th and down to 23 today.  Neutrophils are beginning to rebound nicely finally. 

I consider myself an intelligent and educated person but find myself in awe of the knowledge many of you have.  I don't know what to question/demand when I see my doctor again next Tuesday.  I want to stay positive.  And I want to return to work, grow my hair back, regain more control over my life again.... Not asking for much!?  Any advice, information would be helpful.  I find that I am getting my best information from this board.

Thanks, Kim

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Kim, thank you for posting and letting us meet you.  Isn't it nice to have a place to go?  It gave me peace to know I was not alone.  

Your platelet number roller coaster is certainly curious.  Your attitude to stay positive is good, but I think it is time to start asking questions.  You do have to be your own advocate. 

I can't tell you have completed your radiation or not - but let me say this.  Think about it.  Radiation to your pelvic area is where you have a lot of bone marrow - where red and white blood cells are made - and radiation can continue to work up to six weeks after treatment ends.  I had 3 chemo/all my radiation/3 chemo - and I was warned that if there was going to be any problem of getting my treatment done on time it would be on the last 3 chemo.  It was that darn radiation that had such an impact on my treatment being delayed a week.

So it sounds like you are done with chemo which is good and hopefully done with the radiation.  I would ask if this type of platelet drop is normal?  When can you see it start to rebound and stay elevated?  Is there anything you can do to 'boost' it - food to eat?  How will this be monitored until it stabilizes?  What is going to be the follow-up schedule for check-ups and what is that going to consist of?

Your 'asks' are not unreasonable. Returning to a 'new-normal' life with hair.  Please do come back and let us know how you are doing.

 

Northwoodsgirl
Posts: 536
Joined: Oct 2009

So glad to see your post. You have endured more than you probably expected. One thing to ask your doctor is “What has been ruled out as the cause of my abnormally low

platelets?”

Also  “ Do you anticipate that I will have ongoing problems with low platelets? If so why? “

“What can I do to prevent my platelets from dropping again?”

“ What else should I know about related to my platelet situation that we haven’t talked about?”

” Please describe what symptoms I or my family should look for to ensure I don’ t  end up rehospitalized for low blood counts.”

” What if any contributing factors were there to my developing low platelets?”

” At what point would I need a consult by a hematologist ? (doctor who specializes in diseases of the blood or blood components).

That ought to be enough to advocate for yourself :) And get an understanding of why and what’s next! 

 

lovemyhubby
Posts: 27
Joined: Jan 2018

Thank you NoTimeForCancer and Northwoodsgirl for responding.  I am receiving weekly blood draws and alternating weekly appointments with my MO and RO.  Unfortunately my platelets remain in the low 20's.  A  bone marrow biopsy is scheduled for January 30.  Both doctors believe my bone marrow is "tired" from chemo and the low platelet levels will slowly recover and do not believe I have developed a secondary cancer.  MY RO called me last night telling me my radiation may be able to begin in late February, dependent on platelet levels.  He stated some concern over the 12 week gap between chemo and radiation but stated it is more important for my body to recover from chemo.  With several precautions, they have allowed me to return to work.  Working has been so cathartic and my depression has lifted.  Despite being a victim of this horrible disease I am happy and productive.  I thank all of the women on this board.  Not feeling "alone" has been a tremendous help.  You all rock!

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