Home from second opinion

HELEN - you are an angel.  Thanks for writing.  OK - here is the poop I feel more in love with my doctors and my cancer care hospital - NTUH than ever.  I found the Cancer Center HUGE, with tons of whistles and bells but NO SOUL.  AND, they send out for many procedures to guess where - NTUH.  And I ran into my sweet, adorable Dr. Chen yesterday getting updated records for the second opinion meeting-so I had a sonogram with him this morning to check for ascities and admission tomorrow instead of next Saturday.  He told me his mom had her brain tumor surgery at NTUH and that's ALL I needed to hear - no MD Anderson, no UCLA, no place else but NTUH - I will ride this home with them.  Second opinion guy had GREAT glasses (ha ha), said to take Olaparib if BRCA is positive (after BRCA test which Taiwanese people hardly ever need).  I told him to have this exact conversation at MD Anderson would have cost 16,880.00 he could not believe that.  Yesterday was 240 NT dollars with my health card (that's about USD $7) It was so embarrassing to talk about USA health care.  He and his staff were pretty shocked I do not want to go back to the USA.  He also said DO NOT DO CHINESE MEDICINE.  Do not do acupuncture cupping.  He said it was ok to eat mushrooms but like normal food not in excess to like treat cancer.  The emotions of cancer are exhausting - one minute a total grumpy bitch, the next teary eyed self pity, and finally total gratitude like it is CHRISTMAS.  I want to find a Winnie the Pooh Bear for my Dr.Chen - he had one on his lanyard - he has 2 daugthers he helps to bursh their teeth - agest 4 and 5.  OK your turn.  I am always so long winded.  PS not sure what he will do tomorrow will let you know.  Move on Monday.  Start school on Tuesday.  Yay!  xoxoxox Healthy Now.


 

Comments

  • Hello Gang - Chemo changed to TOPETECAN!  Whee!  New side effects.  ha ha.  A little stomach discomfort - like not on the inside but in that area.  CA125 to 130 from 13 in Jan.  I am not following that silly number any longer.  ha ha.  Just doing what the doc says.  Moving day - broccoli juice with yogurt and chia seeds!  yay.  Only a 45 min chemo.  From a 14 hour drip.  That was pretty sweet.  Taking an ibprofen 400 mg for the stomach matter.  I love my docs and staff at NTUH.  It's taken awhile to adjust to this diagnosis but I think I'm finally getting the groove with GRATITUDE.  Go weekly with this new chemo.  With weekly blood work.  But no CA125 test until the end of 4.  Write.  Healthy Now.

  • Hi Sandra, so you are back with NTUH, the second opinion has confirmed that you are happier with NTUH, that is good.  It is important to have confidence in your doctor and the staff at NTUH.  I haven't heard about the chemo drug you are on, is it a new one?  It is good that it only gives you a little bit of stomach discomfort.  I am half way through this lot of chemo, my red cells were down and they gave me a blood transfusion last Friday and I have so much more energy.  I should be able to resume chemo at the end of this week. Keep feeling positive and enjoy your time back at your school.  Take care  Helen

  • Helen-


    It freaks me out that you are having a blood transfusion.  The doc mentioned this procedure as a potential side effect of topetecan.  (I keep thinking of a toucan bird - ha ha - these names all run together after awhile).  You have been under treatment for quite some time right?  You certainly buoy my spirits -- hang tough.  All of these drugs and surgeries have potential HORRIBLE side effects - I almost feel like I am better off NOT knowing so I don't attract them to me and/or subconsciously give them to myself.  You know what I mean?  Gee I was feeling great till I heard these side effects.  I moved today from a fishing village to the diamond city.  And yep, my second opinion was worth every minute b/c it made me realize how grateful I am for NTUH and the care I have received and I do not doubt what has been done - on several fronts.  The language thing is always a problem.  Sweet Dreams for today.  Healthy Now ( I saw my name in a google search on one of these posts and then stopped using it and just stick to HN.  ha ha)

  • Hi Sandra, I didn't mean to freak you out about the blood transfusion.  It is no big deal, they just give you a top up of blood, through the port, just like with the chemo drugs.  Your blood is carefully cross matched and it takes a couple of hours to run it in.  I have been under treatment for 5 years now and for a large part of that time have been able to do my normal things and have felt well.  Take care  Helen

  • Dear Helen - Please know that when I think of blood transfusion I think of death, failure.  ha ha.  I would be better off if no one ever made me read these horrible side effect things - seems to be I am the type that thinks they have all of them.  LOL.  If I know nothing I am pretty fine.  Five years of treatment sounds like a long time and I hope to be one of those!  I really like hearing you are AOK and the procedure is not a big deal.  But chemo takes its toll on us - no doubt about that. The doc mouthed the words "platinum resistant" on Saturday - I should never have read anything at all about this b/c of course it sounds GRIM.  I am tired of course today from a move, a first day, errands, treatment, bicycling.  A second sound night's sleep should get me back in the middle.   H.N.

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